Perfectly Peyton

Third Anniversary

2016-05-04T03:12:00.000-07:00

Today we remember Peyton on the third anniversary of her passing.

Another year has gone by. Another anniversary. Three years has passed in an instant, yet it has been the longest three years of my life in many ways.

I felt like the second year was harder than the first in many ways, but it truly was. This third year has passed by in a flash and I feel in some ways it was perhaps a little easier than the previous two years, but in many ways it held many difficulties of its own. The third year was challenging. Long gone are the days of feeling numb because of the sheer grief I experienced in the beginning. Even the days of overwhelming sadness and grief have lessened in number. I no longer feel the strong waves of grief crashing into me daily as I struggle through the days since losing Peyton. But I do feel grief and loss. I feel sorrow and pain. I feel all of the things associated with loss, but it's somehow a little different. I am not "better". I am not "over it" - and there should be no expectation that this could happen.

I mentioned in my post last year how I felt like the level of depression during the second year was far greater than in the first. I can honestly tell you that the depression is still present. There was a point this year where I honestly thought that the depression was lifting somewhat. Not entirely, but I was feeling "better" to an extent. I had been taking anti-depressants and I honestly didn't want to be taking medication to help me feel better. I just wanted to be better. I went off the medication.

It was during this time where I was bombarded by a crushing wave of grief; blindsided during a message at church. I was shattered in that moment as the message ushered in so many emotions I hadn't felt in quite some time. The message had nothing to do with Peyton or our situation. It did involve a young child in the hospital needing a miracle. He got his miracle. We did not receive the miracle we prayed for - not the one that would keep Peyton here with us on earth. I truly know she is healed, but in this moment ... in this moment, I cannot even begin to express the waves of grief that kept crashing over my heart and soul as memories of those last weeks in the hospital with Peyton came flooding back.

I really haven't shared this with many at all, but this let into a season where my depression just went spiraling out of my control to the point where my brain was keenly aware of how people might choose to respond in a desperate attempt to flee the bondage of depression. I understand that. It scared me. In my lowest moment I had Ron take me immediately to the doctor where I asked to be put back on anti-depressants. I remain on them today and I will remain on them as long as I need because there just should not be any shame in needing help to cope with any form of depression. There shouldn't be a stigma attached to requiring medical help. People get medical help for all kinds of issues. Depression shouldn't be thought of differently.

As far as depression goes, I am much better after being back on medication for a few months or so now. I think Ron would agree that I made the right decision that day.

Moira is doing exceptionally well, all things considered. She still thinks about her sister. That day at church when I experienced that moment - Moira came out of her service having drawn a picture of Peyton lying in a hospital bed. It appeared as if she was waving. Moira's service was in no way the same as the service I had been in. There would have been no connection and no way for her to know what I had seen and heard in my service. Yet she came out having drawn this. When asked why she drew that, she simply responded that she just felt like she had to. Of course I cried at this. It felt to me like Peyton was telling me she was ok.

Ron has spent the past year and a half back in school. He initially was getting some pre-requisites under his belt, but he is currently pursuing a Masters degree in Marriage and Family Therapy through Liberty University. It is primarily done online, but does require some on-campus visits throughout the program. He completed his first week at Liberty just last month. The next will be in June.

We are also working on ourselves and our family as we try to reclaim some form of "normal". For so many years our lives revolved around the care of Peyton. Much as we tried, with the level of care she required, there really was no way to have a "normal" marriage. We are working together on reclaiming that. We just celebrated 16 years of marriage last week. I am truly thankful to be on this journey with Ron.

Many thanks to everyone who has continued to hold us in prayer, especially at this time of year. We truly appreciate you.

If you have a particular memory of Peyton you'd like to share in the comments, I would love to hear from you. Thank you so much!

You can take a look back at her Tribute HERE.

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." {Romans 8:28, NIV}

May 18, 2006 {3 days old}

October 2013 {17 months old}

Peyton and Daddy - May 3, 2013

Peyton and Moira - May 3, 2013

Peyton and Mommy - May 3, 2013

February 20, 2013 - laughs and smiles while wearing Mommy's glasses

Nine

2015-05-14T21:01:00.000-07:00

Our precious Peyton would have been nine years old today. I am sharing some images from each May of her life:

May 2006 - newborn

May 2007 - 1st birthday

May 2008 - 2nd birthday

May 2009 - 3rd birthday

May 2010 - 4th birthday

May 2011 - 5th birthday

May 2012 - 6th birthday

May 3, 2013 - This is one of the last photographs of Peyton before she passed away the following day. In this picture, she was 12 days shy of her 7th birthday.

Happy Birthday in Heaven, Sweet P.

February 2013 - Truly one of the last best pictures I have of sweet Peyton. She was wearing mommy's glasses and was full of smiles and giggles.

Second Anniversary

2015-05-04T03:12:00.000-07:00

Today we remember our precious Peyton on the second anniversary of her passing.

It seems so surreal that it has been two years. One year was hard to fathom, but two?? I honestly don't know where this past year has gone. It has flown by. Two years has passed yet I remember vividly the events leading up to this day in 2013. It was yesterday. It was a lifetime ago.

I re-read the post I shared on the first anniversary and considered where we were then versus where we are now. One might make the assumption that being a year further removed from the loss would make things easier, but I have to say that this past year has been far more difficult for me than the first year. I had heard that the second year can be harder. I wasn't sure about that when I first heard that, but for me it has proven to be true. I don't know if it's the fact that I'm not in the fog, haze, and disbelief over her loss; things that maybe sheltered me from feeling the entire impact of loss during the first year. I'm not sure.

The level of depression I felt during this second year was far greater than during the first. Of course, being in the second year, I felt like I had to not be depressed; to not show it in public. I felt like I was obligated to get back to what everyone else went back to in the days and weeks after losing Peyton - a "normal" life. Intense depression will keep you from what is considered "normal". I don't think life would be "normal" even if the depression hadn't settled in like it did.

I am doing much better now. It's an uphill climb out of depression - and it is not easy. I am far better than I was those many months ago. It's three steps forward, two steps back sometimes. But most days are better now. Much better! Not a day goes by without remembering Peyton, and that's a good thing. She'll always be a part of our family.

I will say that in the midst of this year, I have restored an important relationship which really needed restoring. I am so beyond grateful for that. It has brought much peace to me.

Just like last year, the past 40 days have been spent reliving the days that I spent with Peyton in the hospital. I so vividly remember how the events unfolded. I look back in thanks for the time that I got to spend with Peyton in her last weeks. I am thankful for so many things - the exceptional team of doctors and nurses who worked so hard to help her; the friends who helped us both at home with Moira and with us at the hospital; new friends that came into our lives because they wanted to do something; family who were able to be with us both before and after Peyton passed; our church family who stepped in like nothing I've ever seen before and carried us through such a difficult time. While I can recount the events of those days, I've tried to put more focus on the things to be thankful for and on how I saw God's hand in the entire situation.

Moira is doing much better this year. She misses Peyton greatly. She loves her sister something fierce. We've been blessed with such an exceptional guidance counsellor at her school who has made herself available to Moira to talk to. She also invited Moira this year to participate in a brand new program offered after school - a support group for kids in the school who have been through a loss. I think this was such a valuable opportunity for Moira. I have no idea who was in the program or anything that was discussed - and that's how it was designed. All I know is that it seemed to be very beneficial to her, and that is such a blessing to us.

We recently learned that one of Peyton's home nurses passed away a couple months ago. She was the last home nurse to work with Peyton. She was with us in the ER the day we went in for the last time. We had no idea that that was going to be it. I did get the chance to have lunch with the nurse one day sometime in the past year or so. I had no idea that that was that last time I'd ever see her again. She was an exceptional nurse and a wonderful lady. She is greatly missed.

As we try to learn what "normal" looks like for our family, my prayer has been that God reveals to us what our "next" will be. I've been praying fervently for this for over a year. I have felt strongly that there is something, but have no clue what it's supposed to look like. I continue to pray for wisdom and discernment in this area for our family. I know God has a plan and a purpose for us and we wait expectantly that He will lead us to exactly what that purpose is.

Many thanks to everyone who has continued to hold us in prayer, especially at this time of year. We truly appreciate you.

If you have a particular memory of Peyton you'd like to share in the comments, I would love to hear from you. Thank you so much!

You can take a look back at her Tribute HERE.

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." {Romans 8:28, NIV}

May 18, 2006 {3 days old}

October 2013 {17 months old}

Peyton and Daddy - May 3, 2013

Peyton and Moira - May 3, 2013

Peyton and Mommy - May 3, 2013

February 20, 2013 - laughs and smiles while wearing Mommy's glasses

Eight

2014-05-14T21:05:00.000-07:00

Sweet Peyton would have been eight years old today. I am sharing some images from each May of her life:

2006 - newborn

2007

2008

2009

2010

2011

2012

2013 - one of the last pictures taken of her, less than 24 hours before she passed away

Happy Birthday in Heaven, Sweet P.

First Anniversary

2014-05-04T03:12:00.000-07:00

One year ago today, at 6:12 am, Peyton went to be with the Lord.

I type those words, and I cannot even believe that it has been an entire year since she passed away. Twelve months. 365 days. An entire calendar has been flipped through. It just doesn't seem possible. We've been through every "first" - her first birthday in heaven came just 11 days after she passed. As I write this, my emotions are every bit as raw as if it was just yesterday and not an entire year ago.

This past week has been quite difficult. I've referred back to this blog several times over the past several days, re-reading bits of that 40 day hospital stay which would end in Peyton's passing. I have been reflecting on where we were at "this time last year" on several occasions. Ron and I celebrated our 14th anniversary this week, but it's just so different now as we were in a very difficult place at this time last year. We were facing decisions and meeting with an entire medical team to discuss how to proceed. While I have no doubt in my mind that we made our decisions with all the love, respect, and dignity that was due Peyton, you simply cannot imagine the pain and heartbreak that goes along with those unless you have been in that position.

I think, for the most part, the three of us - Ron, Moira, and myself - are doing alright. We all have our "days". Moira frequently talks about how she wishes Peyton didn't have to die. Just the other day, she was saying again that she wishes Peyton didn't have to die so close to her birthday. Moira is as aware of what the month of May brings as we are. A year out, I can say that we have experienced some joy in life again, but the loss is still very fresh in our minds. There is, and always will be, a large piece of our lives missing. Yes, we carry Peyton in our hearts, but her physical presence is so deeply missed.

We have so appreciated the prayers and support we have been given over the past year - more than a year, really. Our heartfelt thanks, once again, to all of the people who rallied around us during Peyton's hospital stay and after her passing. God used so many people in so many ways to support us and lift us up - and He still does. You just cannot possibly know how much your gestures have meant to us. I know things will become easier as time goes on. Life won't ever be the same as it once was, but it will get easier.

We are still just so grateful to all the people who cared for Peyton. There are so many people who were involved in her care and we will always remember them.

If you have a particular memory of Peyton you'd like to share in the comments, I would love to hear from you. Thank you so much!

You can take a look back at her Tribute HERE.

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." {Romans 8:28, NIV}

May 18, 2006 {3 days old}

October 2013 {17 months old}

Peyton and Daddy - May 3, 2013

Peyton and Moira - May 3, 2013

Peyton and Mommy - May 3, 2013

February 20, 2013 - laughs and smiles while wearing Mommy's glasses

A Year Ago Today...

2014-03-26T19:34:00.001-07:00

One year ago today, I wrote a hurried blog post requesting prayers for Peyton as she as back in the hospital once again. You can read that post HERE.

Earlier that same day, I'd posted a long post about genetics and the possibility of going back up to Boston for a second visit. You can read that HERE.

As I sit here right now, I am simply amazed that it was one year ago today that Peyton left our home for the last time. One year ago today, I knew that there was something just not at all right with her. She was far beyond her normal "self" and was in pain. It broke my heart each day to see her in pain because she could not communicate to me where she was hurting or what exactly was wrong. Her health had been declining noticeably for a period of a few months, but this day was a day where things just weren't right at all.

I distinctly remember this day one year ago. Peyton's nurse and I hurriedly got Peyton ready. Ron, Moira, Peyton, the nurse, and I loaded up in the car. Ron dropped Peyton, the nurse and I at the door to the children's hospital ER. We sat in the ER for ages as the doctors tried to piece together what was going on. They did discover a new leg fracture, in the same leg as she had had a fracture just a month or two earlier. "Copper bones", as they would become known. That's what Moira called {and still calls} them. Brittle bones caused by a severe copper deficiency. We wouldn't know that at that time a year ago, really, but that's what it was.

A year ago today, Peyton had a broken leg. A year ago today, Peyton was admitted to the hospital overnight for pain management. A year ago today, we had no idea we would spend the next 40 days in the hospital together - she and I for 40 days {I did not leave her to go home once. I left her room fewer than 10 times in 40 days, for a total of probably less than one hour altogether.}

I did not know how significant our leaving home was on that day one year ago. I didn't know then that not all of us would return home.

One year ago today, our faith and trust in God began to be shaped in a way it hadn't been before. Yes, we had tremendous faith and trust in God at this point in our journey. A year ago today, we began the most painful and difficult part of our almost 7 year journey with Peyton, It would test and sharpen our faith and trust in God. It would bring us closer to God than ever before.

One year ago today, our life began to change forever.

And we know that in all things God works for the good of those who love him, who have been called according to his purpose. {Romans 8:28}

Ten Months & A Diagnosis

2014-03-04T05:00:00.000-08:00

On Monday, March 3rd, 2,849 days after Peyton was born (407 weeks exactly), we received a DIAGNOSIS. This came exactly 303 days (or 42 weeks and 2 days) since Peyton passed away. As in her life, Peyton's diagnosis is complicated.

The gene is SLC33A1. Boston Children's Hospital was working on a theory that Peyton had an EXCEEDINGLY rare copper disorder linked to this gene. Two mutations need to happen to have this disorder. We knew she had one. We found out this past Valentine's Day that she may have had the second, but more studies were needed. The research was being done through both BCH/Harvard and the NIH in Bethesda, MD.

We have confirmed that Peyton DID have two mutations on SLC33A1. This gene's responsibility is to transport copper through membranes of the liver. What was discovered is that Ron had one of the mutations and I had the other. We had also discovered Moira has the same mutation as me.

Here's the thing. Ron's mutation is the ONLY documented mutation of this sort EVER in medical history. My mutation is the ONLY documented mutation of this sort EVER in medical history (well, except for Moira). We know these mutations are inherited, so they came from somewhere. But Ron and I have a mutation (each one different) that is unique in the world. Clearly this must exist elsewhere in the world, but everyone in the world isn't tested for these things, right?! Both Ron's and my mutations are "wonky", but my mutation is worse. Ron is missing 10 letters of his gene (whatever that means). I only have 1/3 of that gene. We are healthy. Moira too. If there were to be a problem related to this mutation, Moira wouldn't be here. The combination of these two mutations is lethal.

Peyton's diagnosis is the ONLY RECORDED DIAGNOSIS EVER in the world. Ever. The case study they were studying when they were hypothesizing what Peyton's disorder was is on the same gene, and there were only about 5 children involved in the study. Each of those children had two mutations on this gene. Each child in this case represents a unique, individual set of mutations on this gene. Each one unique, but the same gene. Of these children, Peyton lived the longest.

Think about it. Knowing what you know now...consider the odds. What are the odds that Ron and I would meet up?? I grew up in Canada and he grew up in Texas. The odds are mind blowing. As I listened to all of this, this scripture went through my head over and over:

"For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago." (Ephesians 2:10)

I don't believe that Peyton's story is over. Just as those 5 children in the study I mentioned helped to bring us to the point we are at today, so I imagine Peyton may help someone else one day. Even after sleeping on all this information last night, my mind is just blown away by everything. The odds of Ron and I getting together. The odds of each person with mutations on this gene (the children and us parents) each having a separate, distinct, unique mutation - one combining with another - to form a child with this disorder. Then I consider all of the events that lined up in our lives to get to this point. Had we not gone to Boston in 2012, we may never have learned what we learned. I don't think we would have.

What we do not know here on earth, I believe God certainly does know. He is the master planner of it all. He orchestrated everything from beginning to end. Having an answer doesn't explain the "why her" questions and it doesn't bring her back. In fact, having the answer would not have saved her. I just know that I believe that each moment and each piece of this journey has been a part of a God-orchestrated plan for some greater purpose which we may not have the ability to understand. Maybe not now. Maybe not ever. I doubt the families of those 5 children ever learn about us, but if it weren't for them...

Mind blown. That's about all I can say right now.

P.S. Yesterday I shared part of Peyton's story and our testimony over on the "Monday Matters" feature at Matt Ham's blog. If you haven't, I encourage you to head over there and read it. You can click HERE to jump over there.

Exceptional

2014-02-23T11:31:00.004-08:00

Peyton passed away nine and a half months ago, but Ron and I continue to seek answers to the mystery that was (is) Peyton. I shared in a previous post my thoughts on what life is like nine months since she passed. You can read that HERE. Today, however, I'm coming back around to a sort of medical update on Peyton. Odd, isn't it? She's gone these many months and yet there's some news to share.

As you may or may not remember, we had taken Peyton up to Children's Hospital Boston in August 2012. This was for a third round of opinions on her condition which had, at that point, been thoroughly gone over by both Texas Children's Hospital in Houston (from her birth in May 2006 until we moved in August 2008) and Medical University of South Carolina Children's Hospital (MUSC; from August 2008 until her death in May 2013). There was really no shortage of experts working on her case, but some Orthopaedic issues prompted a trip to Boston where Peyton wound up having seven different appointments with a variety of specialists within a five day period (Pulmonary, Orthopaedics, Neurology, and Genetics to name a few). While Ortho was the driving force behind this trip to Boston, the Genetics consult wound up playing the biggest role for us.

We never did have a diagnosis for Peyton's overall condition. What we did know was that it had to have been some sort of genetic condition and it had to have been exceptionally rare. In fact, after that Genetics consult in August 2012, there was one potential candidate for a diagnosis which did not pan out. There is no name for the condition as the information uncovered was all within a research study being done in Germany. In that study, there were fewer than 10 (perhaps 5 or 6) known cases of this particular condition which involves a copper deficiency. There are named copper disorders (i.e. Menke's Disease and Wilson's Disease). Don't bother Googling them because those are not what she had, nor are they the disorder being researched in this particular study. Her medical issues were so numerous, that I will simply point you to the "Health Conditions" tab on this blog. You can just click HERE to go there.

In the last few months of her life, Peyton's health had begun deteriorating. She had worsening respiratory issues. In November 2012, she stopped breathing at home when Ron was out. Fortunately he made it home just as the dozen or so EMS people arrived to take her in an ambulance. In February 2013, Peyton stopped breathing for several seconds (which seemed like an eternity) in the hospital just as the Pediatrician was leaving after examining her. She was still in the doorway and her nurse was standing right there, so she had immediate attention. A code was called and it introduced me to a whole new level of care for Peyton. Just a week later, she was back in the ER because she had swelling of unknown origin in her right leg. She was almost discharged from the ER but I said no. I wasn't taking her home without knowing for sure. It's a good thing, because it turned out to be a fracture, which turned into a whole other experience which you can find HERE. You could Google brittle bone disease, but that is not what she had. She was breaking bones and had fractures we didn't even know about which were already healing. It likely stemmed from her severely low copper levels (there are two different levels which were examined several times and, essentially, the amounts in her system were almost non-existent), but we never truly understood why this was happening.

February 11, 2013

From February until March 26 when Peyton wound up in the ER again with respiratory issues (and another broken bone), she would never be the same. Smiles were seldom seen. She was miserable. We knew her health was declining. We had no idea that the admission to MUSC Children's Hospital would last 40 days and would be her last. We had no idea on March 26th that we wouldn't be bringing her home. I can tell you that, as her mother, before the first 10 days in the hospital passed, I feel like God was preparing my heart for what was to happen. I feel like I knew deep within my soul that we weren't bringing her home.

Her team of many, many doctors worked seemingly tirelessly to get to the root of what was going on. There were respiratory issues, orthopaedic issues, gastrointestinal issues, and so much more developing over those 40 days. They enlisted the help of the Geneticist in Boston. Peyton's case was exceptional. I knew as her mother that we weren't finding answers. I knew as her mother that everyone...I repeat...everyone was doing everything in their power to make things better. I knew we were going in circles. I knew things were getting worse. I knew that the outcome was not going to be favorable.

Peyton's life was an education to so many. She was for me, that is for sure! She came with a learning curve that we were not expecting. To answer a question we've received many times over, no, we did not know in advance that Peyton was going to have any issues when she was born. Would it have made a difference if we had? Absolutely not. I did not feel equipped, but God equipped us to face all of Peyton's issues head on. Whether we knew it or not at the time, God was our strength when we had none. He still is. Peyton's best years were between her 2nd and 3rd years of life. She never walked, talked, crawled, sat up on her own. Yet for someone who, to the outside world, could do so little, she is a child who did so much. She taught me more than I could have possibly have taught her. I also believe she taught so many others - people who knew her, met her once or twice, who were on her medical team, and even people who never met her at all except through this blog.

Peyton continues to be an education for the medical world. Prior to Peyton's passing, aside from making those horrendously difficult "DNR" decisions, Ron and I also opted to have several samples taken from Peyton post-mortem and those samples shipped to The Manton Center for Orphan Disease Research in Boston. There is a specific research protocol for Peyton's case and, in fact, a researcher was hired there, part of whose job is to work on Peyton's case. I have checked in with the Geneticist we'd seen in August 2012 a few times since Peyton's passing to see if anything has come up in their research. Here's where I get to the medical news that this post was meant to be about...

Remember that exceptionally rare disorder that they'd suspected Peyton might have, but turned out not to have? Genetics in Boston has been working on Peyton's case with the National Institutes of Health (NIH) in Bethesda, MD. Let me first say that Peyton still does not have a diagnosis. That is important to know. So, it's kind of like there's news...but there's really no news. Still, it's important for us. There is currently some suspicion that Peyton may have that exceptionally rare disorder after all. May. It is NOT diagnosed and we are still a long way off from a diagnosis. There need to be two specific markers for this genetic mutation. We know that Peyton had one, but not the other. As the doctors continue to study her case, there is some suspicion that she may, in fact, have the second marker after all. It is not confirmed and needs more research.

What we do know is that she did have one marker. What we do know is that I (Sarah) carry one of the mutations. What we do know is that Ron carries the other. What we do know is that Moira carries the same mutation that I carry. What we do not know is which of the two markers Peyton is common to (Sarah/Moira or Ron). What we do not know is if Peyton did, in fact, have the second marker. It's a hunch. It means continued research. It means we are at a point where they require skin biopsies from Ron and I. We had previously sent in blood samples. However, the research protocol does not allow for them to collect skin samples from us as we are not affected by this disorder. Either the protocol needs to be re-written to allow for this, or they need to go to the ethics committee to establish that they can, in fact, do this to do further research. It's not enough for us to just say, "Yeah, we agree. Go ahead and take what you need." Research isn't halted, by any means. There is still research being done. There are gene sequencing tests being run which aren't publicly available. We're in a holding pattern waiting to see what comes from those tests.

I will also make it clear that there should be no concern over the health of Ron, myself, or Moira as a result of these findings. Moira does not have any health concerns! I would think that if Peyton had this exceptionally rare disorder, that the odds of Ron and I hooking up (with each of us being a carrier for one of the mutations) would be staggering. If Ron and I were to be having more children, there would certainly be some concern. That is not the case. As for Moira, there is no...I repeat...no concern for her health. Her child-bearing future is a very long way off, so if there is to be a concern for that, we will deal with it in years to come.

So, that is where we are. We still have no answers but to me, this is the biggest "breakthrough" since Peyton's death. And it's really not a "breakthrough". It's new news, if you want to call it that, so I wanted to share.

Please be in prayer for us over the coming weeks as we approach the one year anniversary of her passing. There have been some rough days already. I look back a year and see where we were and it breaks my heart all over again. As she was last hospitalized March 26, 2013, there are so many exceptionally painful moments recalled as we look back. At the same time, there is so much to be thankful for. There were so many moments where God's favor and blessing was on our family. I cannot remember the pain without remembering how good He was to us through it all.

In closing, I'm adding what is one of my favorite pictures of Peyton. It is the last picture of her where she looked truly happy. This was taken February 20, 2013, in a brief period between two hospitalizations last February. She did wear glasses, but these ones are mine. I put them on her and she just loved it. Loved her laughs and smiles during this moment. Thought I'd share this picture once again.

Nine Months

2014-02-07T07:43:00.001-08:00

I write today once again dumbfounded that our sweet Peyton went to be with the Lord nine months ago this week. Three quarters of a year has passed since I held her sweet little hand. Soon, it will be a year. The "firsts" of everything will soon be behind us. It is all at once a relief and heartbreaking. Those moments of anticipation leading up to the first birthday or holiday without a loved one can be terribly difficult. In actuality, I am feeling more anxious over the second birthday without Peyton. She passed away May 4, 2013 and would have been 7 years old on May 15. Her passing was still so fresh and raw when we faced that day. In a sense, it is this coming May 15 that truly seems like the first because we will have had barely over a year to process everything when we flip that page on the calendar.

Nine months is an interesting place to be when you are grieving the loss of a small child. I don't use the word "interesting" in a way that conveys that I'm just sitting back curiously observing this moment in time without emotion. Not at all. It is interesting but in a difficult way. Perhaps it is because I am a woman and a mother. Perhaps it is because I have had the privilege of becoming pregnant four times in my life, though one pregnancy resulted in an early miscarriage and another a later stillbirth. Nine months is that chunk of time we associate with the length of a pregnancy. Though I never actually carried any of my babies to nine months, it is somehow interesting and a little unsettling to reach the nine month mark on the journey of grief.

Why does this thought even occur to me?? I am forty-one years old. Studies suggest that the prime child-bearing years are between ages 20-35. I'm no expert, but being six years greater than the "old" end of that spectrum doesn't seem right. I do remember working with someone once who had two children, both of whom were born to this woman after she was 40, so there's nothing to say it's impossible. Even Sarah would give birth to Isaac in her old age {Genesis 21:1-7}. But let's suppose getting pregnant were even a good idea at forty-one. Pregnancy is not something that agrees with me. My first pregnancy in 2001 resulted in me developing pre-eclampsia so severely that it would cause our first baby, Jeffrey, to be stillborn. It also nearly took my own life. Two weeks post-partum, I would develop a massive pulmonary embolism {that is, seriously large blood clots in both lungs and in the area which spans from one lung to the other}. That nearly took my life. Then in 2003 I miscarried. Then in 2004, while pregnant with Moira, I developed pre-eclampsia again which could have been life-threatening to both of us. It was, however, caught much earlier and it caused me to be hospitalized immediately. The end result was that Moira was born 5 weeks early because that could have taken my life. Then Peyton. Once again on blood thinners for the duration of my pregnancy, I was a high risk OB patient. Oddly enough, the pregnancy was uneventful outside of being watched like a hawk because of my past history. Two weeks post-partum, I was back in the ER with yet another massive pulmonary embolism which, you guessed it, could have taken my life. Here I sit in 2014 recovering from a non-pregnancy related massive pulmonary embolism which occurred at the end of September 2013. Once again, I am lucky to be here telling you about this. To say that pregnancy and my body don't play well together is an understatement. I am fully and completely aware that it is only by God's grace and healing hand that I am here.

But here I sit nine months down the road of grief and healing, considering the fact that one could have a baby in the amount of time that has passed since Peyton died. "One" being "me". Um. Really?? One of the very difficult things for me to process on this journey has been the fact that we are a family of 3. Not 4. Not 5. And certainly not 6. We are three. In those childhood years of mine, I dreamed of having a large family. I wanted 3 or 4 children. I guess it didn't occur to me to specify that I wanted them to be here with me on Earth. Oh, I completely believe that I do have 4 children. I just never anticipated having our family here on Earth be stripped down to 3 before I even hit 41. By God's mercy and grace, it is not a family of two right now.

Yet the thoughts rattle around my brain and there are moments where I do wish that we had multiple children filling our home. Don't get me wrong, I am absolutely in love with Moira and I certainly do not question God's plan for our family. Yet there are moments where I see other larger families and think how amazing it would be to still be four and not three. You know when you get a new car how all of a sudden you start seeing your car everywhere? It's been that way for me in that since Peyton passed away, it seems like everyone and their mother have gotten pregnant. It's probably no more than normal, but in my mind it's like this baby boom has happened and it's something we can't be a part of. I'm not unhappy for other people. I just wish sometimes that that part of our life could be different. Short of adoption, we will continue to be three. I don't know what God's plans are for our future. Who knows what could happen down the road. God is full of surprises.

Nine months out, there is still much sadness. There isn't hopelessness. I don't know that I've encountered that feeling at any point along this journey, even before Peyton passed away. I have always felt God's presence along this journey. I know He has been with us every step of the way and He has carried us and sustained us when we couldn't do it ourselves. Truth is, we can't do it ourselves. The reality is, we've never had to. We've never been alone. We aren't alone. In a world that has been, for me, exceptionally isolating and lonely at times, I know that I've never been truly alone.

I struggle in many ways. That isolation I mentioned - that's the biggest thing I struggle with. I've been recovering from illness and injury in the past 5 months. Those things have caused me to feel even more isolated. If it weren't for that, I think I'd still have some sense of isolation and loneliness. Those are things which existed before Peyton's passing. Our situation with her put us in this state where no one could possibly comprehend what we were dealing with. Our encounters with other people outside our family were few and far between. I think people are very well intentioned, but just don't know what to do or what they can do. It's the same in her passing as it was in her life. How many people do you know who have lost a young child?? There aren't very many people who can relate to what we're going through. Perhaps loss, in general, but most people cannot relate to our experience in any way. It can be very isolating.

So, the big thing I'm dealing with nine months into this journey is the concept of what is next. I feel like there is more, but I don't have any idea what it is supposed to be or what it is supposed to look like. It's very frustrating to know there is more, but to not have a clear vision of what that is and how you're supposed to go after it. I continue to pray that God will make His plan clear for me so that I know the path He's already laid out for me. I pray that He will clear out the fog, the haze, and the clutter from my mind so I can be as open as I can possibly be to hear from Him. Until that is made clear to me, I wait expectantly because I know He has a life of promises ahead for me. I don't want to miss them because I can't see clearly!

A Seven Month Update

2013-12-15T19:26:00.000-08:00

I can't believe how quickly December rolled around. I think we were several days in already when it really hit me that it's December already! December 4th marked seven months since Peyton passed away. Perhaps it was my pre-occupation with my upcoming surgery or the busyness of the season, but the 4th came and went smoothly. That monthly marker usually hangs over me. This month was the first month where it didn't weigh quite so heavily. It is heavy, but I felt like the day passed by with perhaps a little more peace in my heart.

I realized recently that, in case you have been following the story about my own health issues here, I really haven't updated that in a long while. So, unless you have been following over on my regular blog, you may not know what's up with that, between my ankle injury and the pulmonary embolism {PE}. I was awaiting results from my ankle MRI. I saw the Orthopedic Surgeon on October 30th as an already scheduled follow up visit from the first one I had after the ankle injury. The MRI was scheduled after he learned about my PE. The timing of the MRI wound up being such that he would have the results in hand when I saw him on October 30th.

The results weren't great. I felt like things "weren't right" even before the PE slowed down my physical therapy progress. The MRI confirmed they weren't right. I didn't have a bad sprain and pulled ligaments. I actually had a torn peroneal tendon. What does that mean? You can click on that term to pull up a link or, simply, you know the bumpy bone that sticks out on the outside of your ankle?? The peroneal tendon runs along the bottom side of that and down to your foot and up the side of your leg. That tendon was torn when I rolled over on my ankle. This type of injury is often seen after repeatedly doing that, which I have done for as long as I can remember - just never this bad. The ligaments are loose and it causes the ankle to be unstable which, in turn, causes the ankle to turn over suddenly. Ligaments can heal themselves over time. Tendons really don't. As soon as he was explaining this, I knew what was coming. Surgery.

The problem with my case is that I have the recent history of PE. The surgeon wanted medical clearance from both my Hematologist and Pulmonologist before proceeding with the surgery on my ankle. A tentative date was set for November 21st. On November 11th I had an appointment with my Hematologist. He was all for me having the surgery, as he knew I was in a lot of pain. However, he wasn't on board with it happening so soon after the PE. Ideally, he would have liked for it to be at least 3 months from the PE which happened on September 30th. Realizing the pain I'm in and the injury, he said anytime after the first week of December should be fine. That meat postponing the surgery date. The new surgery date was December 12th.

I was to show up at the hospital at 11:30am on the 12th {last Thursday} for 1:30 surgery. Originally it was 2:30, be there at 12:30, so an hour earlier was fine by me. He seemed to be running long, so things really didn't get rolling til closer to the original time, if not a little later. Ron and I said our goodbyes as they wheeled my stretcher down the hall. He was back out in the waiting room when we stopped. Something was missing in the paperwork. I'm not sure if it was an expired clearance from one of the other specialists I am seeing or if they were missing the clearance altogether, but something wasn't right and I couldn't go back to the OR til it was fixed! Long story short, it had to do with the Hematologist. They moved another guy to my time slot in the OR while that mess got sorted out. I was in the OR at 4:35pm.

At 5:51 I was back in recovery. That's what I first remember - someone giving that time as when I was waking up. I was in quite a lot of pain. I had to get IV pain meds a few times and then an oral med before they sent me home. I was home by 7:00pm or so.

I wouldn't say my pain was out of control Thursday night. Ron went and got my prescriptions filled, came home, and took care of my needs and I pretty much just went to bed right away. I was in and out of sleep all night, but sometime in the early morning, I knew I'd have to get him to call the doctor's office for me to get something different or stronger for pain control. I knew at 8:30am Friday that the meds I had weren't going to cut it. I know the first 24-72 hours after surgery are the worst, but they shouldn't be spent in nearly that much pain. He left a few messages and finally heard back from them at 4:00pm. Let me tell you, that is a very long time to wait when you're in so much pain all you can do is cry, shiver with teeth chattering and pray for someone to whack you over the head with a shovel so you'd lose consciousness. I kid with that last part but it was the worst pain I've ever experienced - and that is saying a lot considering all I've been through.

What ultimately happened is that my oxycodone prescription was already a hefty dose. I was already taking the max dose at the shortest intervals with no effect whatsoever. They changed the dosing schedule and the amount to take of that prescription at certain time periods so that three out of every four hours around the clock, I could get something. It wasn't necessarily the same each time, but there was only one "off" hour out of every four. If I didn't need it, I could skip but I had to stick to each hour being specifically as directed. I wasn't skipping anything. I finally got relief and Saturday morning was fairly good, all things considered. The pain started to creep back up on me, but so were some of the side effects of taking that much pain medication. I have been setting alarms round the clock to make sure I didn't miss any doses, but at some point early on during the night Saturday night, I realized that this strict schedule made sense on paper and upon review of it in writing...every time. However, when it came to grabbing the bottle of meds and sorting out how much {1 or 2} to take, it wasn't computing. It made me question things to the point where I knew what I should have taken at a certain time, but wasn't sure if that's what I'd actually done. I realized the best solution, since my pain was actually lessening at that point, was to take nothing {I wasn't absolutely needing it} until I could get to the start of a new four hour cycle safely - where I wasn't somehow taking two doses with 2 pills in a dose within one 4 hour period. Confused yet?? I kept setting those alarms just to be sure I wasn't losing any ground on pain control. I wound up not taking any oxycodone until almost 1:00pm today! I took some Tylenol in the morning, but that was it. And I wasn't needing the oxycodone, so this was good! I did start taking it in the afternoon and this evening ramped it up to the higher dosing, but I'm thinking that the end of the days are going to be bad, so get used to it. The more frequent dosing caused me to go through my prescription faster. At least I know that I can make it to Monday with what I have left.

Recovery so far hasn't been pleasant. They were definitely right about the first 24-72 hours. I'm now past the 72 hour mark. As I said, I think the end of the days will be more painful. It was with the injury before surgery anyway. The peroneal tendon has been repaired and a couple ligaments tightened up. I am now in a very heavy soft cast until I see the surgeon for a follow up on December 27th. I don't know if I'll be put in another cast or just back in the boot at that time.

I am fortunate that Ron's mom had already been planning on visiting at this time before the surgery date was changed to December 12th. She arrived on the 11th and leaves Tuesday. It's been very helpful to have her here. I really appreciate everything she has done. I also appreciate Ron and Moira's help. Ron has taken a few days off. With everything we went through earlier in the year, he's not got a lot of days off remaining, so it's a good thing it's almost the end of the year! Ron and I already asked each other for forgiveness for ourselves for times when we might become frustrated or lose patience with the other. I hate being in this much pain and being so dependent. I don't like asking for help. However, I simply cannot do things without help right now. I am trying to do a little more each day - and more quickly than I probably would have if I hadn't had the blood clots to contend with. Our main goal right now is to do our best to prevent that from happening again. There's more of a risk after surgery anyway, but after surgery already having blood clots...that's a little different!

We did our best to help minimize Moira's concern for me and this surgery, but she's a worrier. She's been through so much with us, especially this year. I tried to play up the fact that I was excited to get the surgery over and done with so I could get on with the business of truly recovering. I don't know how much she bought that but it was all I had. She sees the pain I'm in now. It's hard to put on a brace face when you want to scream in agony, but you do it anyway. Or you try. But she knows I'm hurting and she worries. I find myself again playing up the fact that the worst is over and now I am really on the path to recovery and healing. She probably doesn't know about the next few weeks of fear of blood clots happening that Ron and I worry about. We are just praying that that won't even be an issue ever again. She's such a strong girl. I am proud of her.

Keep us in your prayers, please, as we go through this healing and recovery period. It's a long road ahead, but as I keep saying to Moira, this time that road is leading to true recovery. The worst is over.

Six Months & A Remembrance Service

2013-11-03T21:10:00.000-08:00

Today marks six months since our sweet Peyton passed away. Six months seems absolutely incomprehensible. It is surreal to think that so much time has passed. I have said it before - no matter how much time has passed, it all at once seems like an eternity yet seems like it was just yesterday.

It is also very hard to believe that we are now in November and are charging full steam ahead into the holiday season. I don't expect this to be an easy time for us. For myself, this month I will celebrate my first birthday without Peyton. For our family, we will celebrate Thanksgiving without her present with us and then Christmas next month. Then it will be a new year. That is so much more difficult to comprehend. It has always been difficult for me to transition to a new month wherein it is a new month that Peyton has not been present with us. I can't bear flipping that last calendar page and beginning a new year that she will not physically be a part of with us.

On November 1st, Ron and I attended a Service of Remembrance at St. Luke's Chapel at MUSC. One of Peyton's home nurses attended with us. I was honored that she attended with us as she was the last home nurse to work with her. She moved out of town shortly after Peyton went into the hospital and wasn't here when she passed away. She has since moved back and I am so grateful she could attend this with us.

The service was so touching. It was as much for MUSC staff members as it was for the families grieving the loss of a child. I have no idea when the other families suffered their losses, but my heart broke for them as it did for my own loss. The service opened with words from a Chaplain from MUSC's Pastoral Care group as well as from the Administrator of MUSC Children's Hospital. Similar to Peyton's funeral service, there were so many comforting words spoken, yet so few that I could recall to memory right now. The Administrator spoke to the medical staff, addressing the fact that this year has been a challenging year with some very difficult cases. I believe I know one of the cases to which he was referring. I know what it is like to be a grieving parent. I do not know what it is like to be in the shoes of the medical staff who work with patients like Peyton. I can honestly say that my heart breaks for them in the losses that they must endure in their profession.

A beautiful poem was read. I have heard it before, but it is always touching and always brings tears to my eyes:

In the rising of the sun and in its going down, we remember them.
In the blowing of the wind and in the chill of winter, we remember them.

In the opening of the buds and in the rebirth of spring, we remember them.
In the blueness of the sky and in the warmth of summer, we remember them.

In the rustling of leaves and in the beauty of autumn, we remember them.
In the beginning of the year and when it ends, we remember them.

When we are weary and in need of strength, we remember them.
When we are lost and sick at heart, we remember them.

When we have joys we yearn to share, we remember them.
So long as we live, they too shall live, for they are now a part of us, as we remember them.

After this reading, the Chaplain spoke again. This was followed by the reading of names of children who have passed away. As the names were read, candles were lit in the child's honor.

Peyton's name was the last name read in the first of three groups. Of the three individuals who read the names, only one had a history with Peyton. It was one of the pediatric hospitalists who worked so hard to figure things out for her and for us. It was this doctor whose service Peyton was on for the first eleven of those forty days in the hospital. It was this doctor with whom I first discussed the matter of "if" Peyton would be going home - not "when". It meant a great deal to have this connection at the service.

I do not know what period of time all of those names covered. But there were far too many children's names on that list. One name would be too many. There were eighty names read. Eighty candles lit. Eighty children for whom many hearts have been broken.

There was a slide presentation incorporating pictures some family members submitted in advance of the service. Tears streamed down my face as I saw the faces that accompanied some of the names read earlier. What was shocking to me was that not all of these children were little children. Yes, some were infants. Some were young like Peyton, who was 11 days short of her 7th birthday. But some were older, wearing a cap and gown in their photo. Some children appeared to have some sort of medical issue, having obvious scars or special need. Others looked completely healthy and vibrant in their photos. I wondered what their stories were.

The service was beautiful. It did bring a sense of peace to me on some level. I know that it did a lot of good for me to see people again. I saw several doctors and nurses who worked with Peyton as well as a respiratory therapist and one of the people with hospice. It was really nice to catch up with some of them at the reception that followed. For me, one of the losses represented in Peyton's passing is the loss of the connections with the medical community she was a part of. Once she passed, there were no more appointments. No more trips to the ER. No more hospitalizations. Imagine having a kind of relationship with several people and then having all ties immediately severed. Not because you don't want to see them, but because there is no need. Peyton was the reason I saw them. It is very strange. I miss these people. So for me, it was beneficial to be able to see them again. I had not seen one of the doctors since the family meeting we had the Wednesday before Peyton passed in order to discuss how we would proceed. A meeting I would not wish on anyone. One of the nurses was one of the last people I said goodbye to before walking off the unit after saying our goodbyes to Peyton the morning she passed. One doctor I hadn't seen since a day or so prior to her passing, when we were trying to tie up loose ends with Children's Hospital in Boston with regard to eventual autopsy issues and the genetic research to be done after her death. There is a conversation I hope no one ever has to have {not to mention the paperwork needing to be signed}! I suppose it's like these are the last memories I have of my involvement with Peyton's doctors and nurses. While Peyton is now gone, it is nice to have a more positive encounter to replace those final memories - if you can call a remembrance service a "positive" memory. It is. It's just the circumstances.

Perhaps the timing of the Service of Remembrance was good for us. It fell just 3 days prior to Peyton's six month anniversary. Six months seems pretty significant - more so than three or four months felt. I am grateful to MUSC Children's Hospital for this event honoring not just Peyton, but the many other children who have passed. The care we received while we were in their care was beyond what I could have expected. That they continue to care for families like ours means so much. I am touched once again by the level of care of the medical staff at MUSC Children's Hospital and am certain that Peyton could not have been in better hands.

Life Lately

2013-10-21T19:07:00.000-07:00

I wrote a little over a month ago - at the 19.5 week mark on this grief journey. We are now at just over 24 weeks and I have to say that the issue of "time" has intensified for me since last time I wrote. The marking of time has been so significant. Each Saturday morning at 6:12 am I wake up and I remember that moment Peyton passed away. I don't necessarily dwell on it for a long time, but there's something about that moment of the day that I cannot allow myself to pass through without remembering her.

I shared news last month about a serious ankle sprain {grade 3 with torn ligaments} which had sidelined me. With this injury came a flood of emotions, causing me to have very emotionally painful recollections of taking care of Peyton when she was in so much pain from bones that were fracturing for no good reason. My limitations caused me to recollect how severely limited Peyton was - and had been for the whole of her life. While my own struggles with this injury are temporary {I hope!}, her issues were not - and it was painful to think of what it must have been like to be her.

So here we are about five weeks further down the road than we were the last time I wrote. I wish I could say that I'm well on the way to recovery with my ankle because I've been going to physical therapy three times a week for the past five weeks or more - but that would be a lie. I wish I could say that I am in a better place emotionally today than I was last time I wrote - but that isn't really the case either.

Why?

There are times in life {it seems} where you just get pounded with one thing after another, after another, after another...and another. This is one of those times.

If we are acquainted, perhaps you know where this is going. If we haven't connected lately or you don't know me that well, here's what's been happening since I last wrote...

My ankle injury was September 8th. I rolled over on my right ankle after getting up off the couch and taking a few steps. As I shared, it was a grade 3 sprain {on a scale of 1 to 3, 3 being the worst} with torn ligaments. I was laid up for a while with that, but after seeing an Orthopaedic Surgeon, I was put in a boot which I used consistently until the last few days. I have a splint that I've been wearing all along, but am only now beginning to wear it round the clock and am able to walk around without crutches and with tennis shoes on - as long as the splint is on too. I did start physical therapy three times a week. I went a few times. I was making some progress. The bruising was finally starting to die down. The swelling, too, was going down somewhat. It's still swollen to some degree, but nothing like it once was.

Then September 30th happened.

I didn't feel "right". I'd been pushing myself to move around and do things for a couple weeks or so, but was still pretty limited in what I could do as the pain I was in was pretty significant still. I had aches and pains that weekend. When I went to bed on September 29th {Saturday}, I was sore and couldn't get comfortable. I was starting to become concerned that the pains I was having weren't just aches and pains from being laid up in bed for a few weeks. Ron knows me well and he knows that when I start getting weird pains in my back, my mind sometimes gets farther ahead of me than it needs to and I start getting a little paranoid. Past medical history dictates that these pains, when legitimate, are not good. So, of course, his concern for me was heightened that night.

I did go to bed and I did fall asleep eventually, only to be awoken around 2:30 am Sunday. I was very sore. I couldn't get comfortable. And I felt short of breath. Of course, I thought it could be the paranoia of the source of these pains, so let's just take a moment to calm down, relax, take a deep breath.... and that's when the sharp pains hit. In my efforts to calm myself, I did fall back to sleep somehow for about an hour. At 3:30 am I was awake and trying to figure out how to get up out of bed {at this point, I'm still sleeping on the pull out couch I've been sleeping on in Peyton's room because it's on the first floor - more on that subject another time, but suffice it to say it has been extremely convenient with this ankle injury}. It wasn't just the getting out of bed that was the issue - in my mind it was getting up, getting the splint off my foot, and the boot on, and getting to the bathroom...without dying. Literally. That's what was in my head. I couldn't walk without the boot, but I needed to get in there. I didn't know how I would stand up without passing out - that's how poorly I felt. The pain was worse. At this point, I could not take deep breaths. Shallow breathing, sharp pains. I knew where this was headed.

20 steps from bed to bathroom. It seemed insurmountable but I did it. Without the boot. I grabbed on to everything I could along the way, last of all the bathroom counter. I made sure to bring my cell phone with me to the bathroom because I had a feeling I'd need it. I texted Ron, who was asleep upstairs, at around 4:00 am - only after I'd somehow managed to pull on clean underwear, yoga pants and a t shirt, brush my teeth, and run a brush through my hair. Yes, somehow as I'm staring at this dusky looking, sickly looking, barely able to breath image in the bathroom mirror, I'm thinking that if I'm needing an ambulance, I surely need to freshen up. Right?!?! Because when you can hardly breathe and are at a point when you're texting your husband to call 911 for you, you've got to look your "best".

Fast forward through delivery of Moira sometime before 4:30 am to the next door neighbor and the arrival of the same two EMS guys who brought me to the ER just a few weeks before with the ankle injury...I was brought, once again, to the ER of the same hospital. Upon arrival, there were some nurses who recognized me. You've got to be kidding me!! I was thinking, so this is what it must have felt like to be Peyton - to arrive at the ER and have people recognize you as soon as you pass through the door! I wasn't digging the familiarity at this moment.

I was seen immediately and had blood drawn. Labwork confirmed what I already knew in my head to be the diagnosis. Pulmonary embolism. Don't know what a PE is?? Good!! I hope you never do! As for me, this is my third time down this road. Third. Once the d dimer test results were back, I was off to the CT scan pretty quickly to confirm a massive bilateral pulmonary embolism - blood clots in my lungs. Yes. Both lungs. Again.

To say that I am grateful to still be walking {or hobbling} on this Earth right now is a mild understatement.

I spent 3 days in an ICU step down unit where I heard multiple times how fortunate I was to have survived this life-threatening event. This is not the first time I've laid in a hospital bed being given news of a potentially life-threatening condition. Five times now, by my count, have I received news of my health being in jeopardy. Three of those times it has been a massive pulmonary embolism - two of those events were post partum. This one...after an ankle injury??? While my injury isn't mild, it certainly isn't the worst possible injury. At this point in time, I have not had any surgery on it. I am awaiting MRI results but so far as I know, there is no fracture. The Orthopaedic Surgeon said he has never seen a case with a similar injury result in a PE. Ever. Lucky me. He said, "I'll even give you a fracture...I've still never seen a PE from this type of injury." Great.

I am now a few weeks past the pulmonary embolism diagnosis. I've not been to physical therapy for a few weeks now. I am seeing my primary doctor this week and hope to get his blessing to return. If I thought I was slowed down as a result of the ankle injury, that was nothing compared to how much the PE has slowed me down. My body flat out revolts when I've overdone it. I'm past the major shortness of breath stage, but if I do too much, I feel very much out of breath and completely exhausted. I followed up with my Hematologist today. So far, the test results that have come back show no clotting disorder as a cause for what happened. Just as the Ortho was mystified by the PE happening as a result of this injury, so too is the Hematologist.

So we come to this past weekend. I've been going stir crazy. I haven't been out of the house except for a few times since September 8th. As I process through the grief over losing Peyton in addition to essentially living in her room, my mind has been racing with thoughts of what we are supposed to do with this space. Her room. What could we do with it? At the same time, the thought of taking her crib down was just not a place I wanted to visit. Her crib was still set up - sheets and all - the exact same way we left it the morning of March 30th when we took her to the ER which resulted in her final hospital stay and eventual passing. I couldn't go there. I've put away little things and gotten rid of some things. But her crib - that's just entirely different. To me, it's a very obvious physical presence in her room and to get rid of it, to me, is acknowledging that she doesn't exist anymore in a very real, tangible way. It marks the end of this being her room.

I was really struggling this weekend. I have been in pain. I have been sick. I am sick of being sick. I'm sick of being tired. I'm sick of hurting physically and emotionally. On Sunday morning, I woke up before 5:00 am. My mind was instantly racing, again, with thoughts on what we need to do next. By the time Ron and Moira were up and getting ready for church, I felt that Sunday would be the day for me to work on the crib. I didn't know if I could do it. I put out a request on facebook asking for prayers to help get me through this task. While Ron and Moira were at church, I did it. I placed her toys in the closet. I folded the sheet and blanket that were on her bed and tucked them away. Her urn, which had been placed in the crib along with her pink hippo back in May, was moved to another location {so was pink hippo}.

It was the hardest day since Peyton passed away.

I can think of a million things I would rather do with my time than to pack away the belongings of my deceased six year old daughter.

The crib has been disassembled. Other items were gone through. Some furniture has been moved into the room in the crib's place. We will work on making our environment functional and hopefully considerably more organized than it has been lately.

The hardest task is done. I no longer have to fear it or dread it because it is behind me now. The crib wasn't "her". This, I know. It's another milestone on the journey of grief.

I am so grateful to the friends and family who prayed for me through Sunday. Without your prayers and support, I couldn't have done this. It needed to be done. I am so grateful to God for the strength to get through this. I literally could not do this on my own. I don't know how anyone could. A parent simply should never have to go through this. Ever. But with God as my strength {our family's strength}, somehow we are making it through this.

One day at a time.

Peyton's 2nd Halloween - 10/31/2007

19.5 Weeks

2013-09-17T20:40:00.000-07:00

It's been 19.5 weeks. More precisely, it's been 136 days 16 hours 18 minutes since Peyton passed away at the moment I type these words.

I open my calendar and I stare in disbelief as the weeks that have passed have not only moved out of the "single digits", but are nearly out of the "teens". It's been 4.5 months. The time that has passed weighs heavily on my mind. As of a few moments ago I calculated nearly exactly how much time has passed using an online tool:

136 days, 16 hours, 22 minutes
or 4 months, 13 days
or approximately 3,280 hours, 22 minutes
or 196,822 minutes
or 11,809,320 seconds

That is how much time has elapsed since Peyton breathed her last breath. The weight of those months, days, hours, minutes, and seconds is heavy. To some, it was "a few months back" or maybe it was "recently" or "near the beginning of summer" or "at the end of the school year". To me, it was 11,809,320 seconds ago {more now since time has passed since I found that figure}.

Ron and I started attending a support group at church called GriefShare. It is a 13 week cycle that covers several topics on grief and loss from a Christian perspective. I attended one complete cycle a couple years after my mom passed away. I began a second cycle, but only made it about half way through {if that} before Peyton's health was declining and was beginning to have multiple fractures. A new cycle began the week of/before/or after Peyton passed away. I forget which. But it was right around that time, and was way too soon {besides the fact that we'd have missed one or two weeks at the time she passed}. We decided that we would both attend when the next one came around. It began last Tuesday night. We attended our second meeting of the 13 week cycle this evening.

We are only a couple weeks in, but between the group discussion, the dvd presentations in the meeting, and the workbook we use during the week, it has me thinking so much more about Peyton - her life and her passing. Not that there was ever a moment where I wasn't thinking about her. She's in the front of my mind now. It is ever present. It is painful.

I think I probably wear a mask some of the time. I'm not always on the verge of tears, but I'm not always "ok". I'm sad. It hurts. Certain situations hurt or bring back memories or feelings. But I can't go around in tears all the time or talking about how painful it is all the time because no one wants to hear that, right?? Truthfully, I don't cry all the time or feel the pain that intensely all the time, but there isn't a day that passes where I don't feel sad at some point during the day. If asked how I am doing, you probably aren't going to hear exactly how I am feeling. What a conversation killer that would be. But I'm not back to "normal" - nor will I ever be. Peyton is gone and there is a gaping hole in my life right now that can't be filled with "things" to make it "all better". I don't even know if we've found a "new normal" yet.

New normal. What is that supposed to look like? A family of 4 became 3. I know that we both feel like there has to be something beyond this. Something more. That Peyton's purpose is not entirely fulfilled. Her physical life with us, yes. But there has to be more. There has to be something more to her life than the 6 years, 11 months and 18 days she was with us here.

I am injured. No, really, I am. I was sitting on the couch. I stood up and took a step or two before rolling on my ankle. I heard a very loud pop followed by a buzzing in my ears, breaking out in a cold sweat and passing out for a few moments. I "came to" to the sight and sound of Ron on the phone. All I could think of was that this was a pretty poor time for a personal call {until I realized he was giving his "friend" a list of my current meds and realized it was 911}. Went to the ER in an ambulance. The doctor said it was not fractured - was a Grade 1 or 1.5 ankle sprain {3 being the worst}, and I was to stay off it for a week. I was given a shot of Dilaudid, put in an air splint, handed crutches and sent out the door. I got in to see an Orthopedic Surgeon on Monday of this week, earlier than I might have thanks to a friend who is a current patient of his. He took "weight bearing" x-rays {involving intense pain and positioning my foot in positions it hadn't been in in 8 days} and confirmed no major fractures or cartilage damage. He didn't suggest there were any minor ones either, so I guess that was good. Just torn ligaments and a Grade 2 to 3 sprain. 2 to 3 is a long way off the Grade 1 that the ER doc said I had! Still, "they" say that with torn ligaments, you're probably better off with a fracture. Maybe I can invite Kathy Bates over to finish the job?!?! Oh, and when my leg is not properly elevated or I am standing, my leg turns purple from the knee down. The Ortho doc noticed this himself and checked my other leg. Apparently there is some sort of autonomic disorder associated with trauma/injury in extremities that can cause weird things to happen with temperature regulation and, though not common, it's more often seen in fair skinned/fair haired or red headed people. Lucky me. Should "hopefully" return to normal in several months. Good to know.

Right Ankle - 9 Days After Injury

I would love to share with you that I did this in some "exciting" way - like roller blading, cycling, training for a marathon, sky diving or base jumping. But the reality is that I got off a couch and took a step. That's as exciting as it gets. But we'll go with "base jumping injury" if it sounds better. Seriously. If this is the damage I can inflict just getting off a couch, I need to be banned from all extreme sports! Or any sports for that matter. I do get some new footwear out of the deal though - a boot. I've got to wear this God-awfully heavy thing for the next several weeks, except during the night when I go back to that air splint.

Why do I share this? Aside from the fact that it's what's going on with me right now, it is having an impact on how I am grieving. How can an ankle injury impact your grief?? Here's how:

* I am in a lot of pain. A lot. I'm out of hydrocodone. I'm hurting. It's just a sprain. I think to myself how much pain I saw Peyton in. It brings back memories of those ER trips with fractures beginning last February. It brings back memories of her laying in bed at home with a huge cast from toe to thigh as well as a cast on her arm, in addition to having compression fractures in her spine. It brings back memories of the pain she was in with the initial fractures and then the newer fractures and then the fracture she developed simply laying in her hospital bed with her leg in a splint!! I envision her pain and suffering and think to myself that I have no right whatsoever to complain an ounce about the pain I am in after all she endured. I think to myself, so what if I am out of hydrocodone. I have other things and I can just suck it up if it's not working. Peyton's pain was out of control towards the end. I am not "suffering". As painful as this injury is, it pains me more to think about what Peyton endured.

* I have been virtually bed-ridden since I got home from the ER on September 8th. I went to our grief support group last week and this week. I also went to my Ortho appointment. That's it. The rest of the time, I've pretty much been in bed, with some time spent on the couch for a change of scenery. I can't weight bear on that foot, so I'm in bed. Laying in bed hurts after a while. I shift and turn and it just isn't comfortable because I've got this boot on my leg. I think to myself how Peyton's last few months she was pretty much bed ridden. Once those fractures started in February, she barely spent time in her wheelchair. Some, but not much. Her whole life, if she wasn't in her wheelchair, she was either laying in bed or on a mat no the floor. I have no right to complain that I'm "stuck" for what I am hoping is a short term injury.

* I have become dependent on others. I am on crutches. I can't bear weight and simply moving from one room to another has caused me a lot of pain and nausea, so I don't get up more than necessary. I can't just run to the kitchen and grab breakfast or lunch or anything during the day. Ron's had to be my waiter and butler and nurse for the past 9 days. I think about how Peyton was dependent on me or her nurses for everything. I have the ability to ask for things or make my level of pain known. She did not have that. She was so dependent on us for every single little thing for her whole life. I feel guilty having to ask for anything because I should be able to do it myself. But I can't.

* This time simply reminds me so much of when we'd go through a medical crisis with Peyton. Normal life would stop for a time. I'd be at the hospital. Ron would have to rearrange his work schedule. He'd have to handle getting Moira up and ready for school as well as making her lunch. He'd get her to the bus. He'd get home for her getting off the bus. He'd get her to her after school art class. He'd run errands needing run. We are having deja vu. I can get up {barely} in the morning, but I can't go upstairs to wake Moira up. I can't make her lunch or iron her clothes, or even easily do laundry for that matter. I can't walk her to the bus stop or go down again in the afternoon to get her. I can't drive, so I cannot run any errands at all. I will be starting physical therapy. I will not be able to take myself. Ron is having to rearrange his work schedule around me. I love him for all he is doing but it brings back the memories of times we did this because of Peyton's needs. It is painful. We are trying to get back to some semblance of "normal" then this happens.

So, you can see that there are several things associated with this ankle injury which are bringing forth a lot of pain associated with the loss of Peyton.

Moira has been doing a little better the last week or two. She had been having several tough days in a row where she'd suddenly start talking about Peyton, cry a bit, and then move on. It was happening with great frequency. It seems to have calmed down a bit but I know she still has moments. She is cheering me on with my use of crutches and the new boot, but I wouldn't be surprised if this whole thing has stirred up some memories for her as well. I know she was teary-eyed and very worried looking as I was taken out of the house on a stretcher and put into an ambulance.

I don't know what I "need" right now in terms of dealing with grief. I am sure the next several weeks of our support group will bring many things forward that I haven't dealt with or maybe even thought about yet. I'm frustrated. I felt like I was taking some positive steps forward until one of those steps literally proved to be too much for me, causing me physical injury!

All I can do is lean on God during all of this because I don't really know where else to draw strength from. I don't have it myself. I don't feel like I do. And I will literally be leaning on Ron for support during these weeks ahead as we process through this cycle of GriefShare together.

Four Months

2013-09-04T04:16:00.002-07:00

How is it even possible that it's been four months since Peyton left this world? It was just yesterday, wasn't it?? The memories of that day are still so fresh in my mind.

It is so strange to not have Peyton in this house with the rest of us. So strange to see all the things in her room, still where they were when she was last here. I have made some progress in putting some things away. The things that aren't readily seen. But, for the most part, her room is as it was. I think I find that comforting. I spend quite a lot of time in this room. It is difficult to not be around the things that remind me of her. It's sad at times, yes, but comforting at the same time.

Moira has been asking more questions. Just a couple weeks ago she asked if she could visit Peyton's grave before school started. There isn't one. She was cremated and her urn sits in her crib in her room. Perhaps that is why I spend so much time in her room. I had the task of explaining cremation to my nine year old daughter. If you don't ever have to go there....don't. There is no way to explain what it means without it being horrifying to a child.

Just last night, Moira was very upset. She is missing Peyton just as Ron and I are - she just doesn't vocalize it as much. She didn't understand why it had to be her and not another child. I told her that while I am very sad that it was Peyton, I would not want another family to have to go through what we went through. I told her I don't understand "why" either, but we were blessed to have her for the time we did, even though it was short. It's hard seeing families with multiple children. No, not envious or angry. Just sad that our family dynamic changed so much, and much too soon.

I am working on the whole "purpose" thing. I've got some ideas in mind that I'm carefully considering pursuing. I'm trying to weigh everything out. Is it the right time? Is this truly what I need and want? How difficult will it be? Yet there is a desire stirring in my heart that I need to be at least thinking of doing something. I think Peyton had bigger plans for me. There is a fear in stepping out, but I have the faith to know that there is more to my life {and hers} than sitting in this room.

Four months. I just miss her so much.

Fourteen Weeks

2013-08-12T07:18:00.000-07:00

As I sit in Peyton's room this morning, I am surrounded by so many reminders of her life here with us. While the room has become a convenient staging ground for laundry folding, so much of this room is still hers. Her little white dresser is still packed with her socks, pajamas, shorts, and so on. The shelves of the bookcase in her room still hold the last open package of diapers, wipes, and ointments from three months ago. The sheets in her crib remain just as they were on March 26th - the day we went to the emergency room. The shelves beneath still hold a lot of her supplies. The only thing missing is Peyton herself. While I believe she is her with us still in our hearts, she is actually still here. Her urn sits in her crib as we have not settled on where to put it.

It was fourteen weeks ago this past Saturday that Peyton passed away. It seems like a lifetime ago, yet it seems like it was just yesterday. The pain of her loss is still very fresh. Her physical absence is noticed each and every day. Thoughts of Peyton are at the forefront of my mind all the time.

Ron and I finally had an opportunity to break away from the stress of it all. The week before last, we were in Las Vegas. We left on the Monday and returned the morning of the following Sunday. To say we needed this getaway is an understatement. Las Vegas has historically been our "go to" place when we have needed to get away from reality. We've been 7 or 8 times now. There is probably nowhere on earth further from what is real than Las Vegas. We didn't gamble a dime, but we had a really good time reconnecting and just being with each other. We enjoyed some incredible food {you can read about that HERE}, took in a couple shows, and walked...a lot. All good things must come to an end, as they say. We've been back a week and I feel the stress of life once again weighing very heavily on me. I guess we need to figure out a way to get away more often. Not sure how...but clearly it's very much needed.

I am finding these last few days to be much more difficult than "normal". I'm feeling "off". I was having a hard time figuring it out, but it shouldn't have been that difficult. Wednesday, August 14th will mark 12 years since our son, Jeffrey, was stillborn. After twelve years, you'd think it would be easier. Yes, it has gotten easier coping with anniversaries and holidays over a dozen years, but this year is different. The wounds seem like they have been ripped open once again with the loss of Peyton adding to the number of children we have in heaven {3 if you don't know}.

I am remaining strong in my faith as I trust in God and live with the hope of the promises He makes to each of us. But loss is loss. I think you could have the strongest faith in the world and still feel the incredible pain and sadness associated with the loss of a loved one. I don't question God's motives in creating Peyton the way He did. She had a purpose. I think she still does. But I would give anything for another moment to hold her and tell her I love her again.

School starts a week from today. Peyton passed away towards the end of the last school year. We had so many people coming and going, that it was pretty busy around here. Summer hasn't been filled with the enjoyment we'd hoped for. I thought maybe it would be an opportunity for more bonding and doing things but the truth is we are simply exhausted and worn down from everything that has happened. I have little energy for doing much of anything. Now that school is about to resume, I'm going to have more time on my own than I have in the past few months. I'm concerned about how to occupy my time. I want to add meaningful and purposeful things to my calendar - not just scheduling "things" to fill my time. I'm not looking for an escape, but a way to figure out who I am.

That's another very difficult thing right now. I feel very lost and without a purpose. Yes, I have my family and that, of course, is a purpose. I feel like there should be something out there that is meant for me to do that is bigger than myself. I don't see it. I had it - it was Peyton and she is gone. Still another thing is that, as you might imagine, the number of people who can relate to us are few and far between. I found after miscarriage and stillbirth that you suddenly discovered so many people around you had faced similar challenges in their life. I've yet to suddenly discover someone who has walked in our shoes where Peyton is concerned.

And so life goes. Right now, it's another wave of feeling the weight of loss. There have been better days through this process and there will be better days ahead. This is just a difficult time right now.

As always, I appreciate the love and support that has been shown during this time. Thank you.

You Are Never Alone

2013-07-08T18:55:00.000-07:00

Great is the sorrow and heartache which accompany a loss. Most of us have experienced loss in one form or another - a grandparent, an aunt or uncle, a friend, a co-worker. Perhaps even a parent or a child. I have experienced many such losses in my life. Three of my four grandparents are gone. Several great aunts and uncles. A few aunts. My mother. My six year old daughter, just eleven days shy of her seventh birthday.

I have walked some difficult journeys in my life, but I have experienced nothing that compares to the loss of a child. We knew when Peyton was born that her time with us would be short, though did did not know how short. Each of those nearly seven years were precious to me because I lived with the expectation that each passing year could be her last. That expectation, however, did nothing to ease the feelings of grief and loss when the time came a little more than nine weeks ago.

Loss can be very isolating. If you've been through a loss, you may understand that there comes a point fairly early on in your grieving where most of the people around you will begin to go about their normal routines while you remain stuck in your grief. It hardly seems fair that life can go on as usual for people when you're life as you knew it ended on that day.

Having previously lost a child through stillbirth and having had an early miscarriage, I've learned that there are more people out there than I realized who have been through such experiences. Now having lost a young child, I've learned that you have to look pretty hard to find someone who can relate. There are other people. I just don't happen to know many. If you look at Peyton in general, we experienced that feeling her whole life. She had multiple special needs at birth and eventually several life-threatening health issues. To this day, we have no formal diagnosis for her condition. She left this world leaving a family and medical community stumped. If we were to look for a support group for people in exactly {or nearly} our situation, we'd be sitting in a room talking to ourselves. She was unique. If there exists the possibility that other people have whatever she had, we're probably talking single {maybe double} digits.

If there is a bright side to this story it is that through our experiences with Peyton, our family came to Christ. If it weren't for that, I cannot imagine being on this journey right now. I am grieving. I have some pretty "down" days. It is because of Him that I am handling this loss as "well" as I am. It is because I know that my strength lies in Him. I know that this life, no matter how long or short it is here on earth, is just a fraction of the time that will be spent with Him. I believe that Peyton has been fully and completely healed. I believe that she is with Him in heaven and that she is able to do all the things she could never do here. I am comforted greatly by the fact that I know for a fact that she is in a better place. I know sometimes meaningful people might say something like that because they don't know what else to say, but I truly believe she is in a better place.

Here's the tricky part for me. Perhaps for some of you as well. No matter how strong my faith, I'm still here on earth and my daughter is still gone. It is still an incredibly painful loss. A great void in my life. I am human, after all. I have drawn great encouragement, strength and support from various places - family, friends, my church, and through worship music.

And still there's days of sadness and, yes, isolation. In the sadness, I try my best to cling to God's promises. I try to draw as much strength from Him as I can. I am human, though. I have moments of weakness where I am not so quick to remember these things. I'm not talking about moments of anger or blaming God - I have not and I will not do that. Just moments of that all-consuming grief where I feel empty. Fortunately those waves of grief are not frequent. I have been having those moments more in the past few weeks though. The past day or two, the feelings have been intensified by the fact that I have been physically alone while Ron and Moira are in Texas.

In those moments of sadness and isolation, God has not left me. He has not abandoned me. I encourage you that if you are finding yourself in such a place that you are not alone either. There is not a moment that passes where you are ever alone. He is with you, never abandoning you in your grief, your trials, your challenges or any situation you may find yourself in, good or bad. There is nothing like proof of this to lift you up from your sorrow. The past few days in particular have held some moments where I have felt alone in my loss. But God has a way of orchestrating things. If you pay attention, you can see His hand at work. I wasn't seeing clearly, but I am now. A planned outing on the weekend did wonders for me and I am so grateful to my friend for that time. In the past 24-48 hours, there have been many "God moments". Between First Wednesday and our Sunday service, there were a couple songs which were sung at Peyton's funeral which I haven't heard sung at church since that day in May. Songs which are so meaningful to me - hard to hear and to sing, but meaningful all the same. I have had several "encounters" with people who cared for Peyton. An email from a former home nurse. A text from her last home nurse, who was working the day we brought Peyton to the ER in March. An email from one of her doctors. Another from a nurse from the hospital who did so much for Peyton and for our family.

And then there was today. I went for a follow up visit with the sleep specialist. The nurse who took me back to the exam room looked familiar to me and she made a comment suggesting I looked familiar to her as well. When we got to the exam room I asked her if she goes to my church. That was the connection. I've seen her at church. I was explaining to her some of the source of my sleep issues {Peyton}. How do you even begin to explain her story in a condensed way?? She asked some questions. She spoke to me. She genuinely cared about my situation - she wasn't just taking down information. Then she paused. She took my hand and right then and there between taking my blood pressure and taking my history prayed over me. If that wasn't a God-orchestrated moment, I don't know what is. He knew what I needed today. He knew exactly who to place in my path. He knew what I needed to hear and used her for that purpose today.

Friends, if you are finding yourself down or downright depressed and not sure where to turn or who to go to, be assured that He is with you. He will be with you through everything. No matter who you are, though, God wants to use you. Every word that comes out of your mouth and every one of your actions is an opportunity to minister to someone who may be desperately in need of hearing and seeing Him.

May you be blessed and encouraged in your trials just as I have been.

* also posted at The Fontenot Four.

Eight Weeks

2013-07-02T07:38:00.001-07:00

Saturday marked eight weeks since Peyton passed. It doesn't sound like a long time. The number of weeks that has passed is still in the single digits after all. Yet it seems so long ago. I feel like our family has been uprooted and thrown to the ground with the expectation that somehow our roots will find their way back into the soil to allow us to flourish again as a new family of three instead of four.

The problem is that there is no timeframe on how long this process should be. In fact, some of us may find themselves becoming rooted before others. I wouldn't say that's happening yet. Although, I would say that Moira appears to be closer to it than either Ron or myself. I feel like we are just supposed to know how to do this on our own. I'm sure we will figure it out in time. It will require lots of time.

It's so surreal having come through a nearly seven year season of busyness - of caregiving 24/7 - to be thrown suddenly into a season of grief and quiet. I have felt, at times, like I'm supposed to be searching for a cause. The truth is that that "cause" needs to be "me" right now. "Us". It's a time for healing. I'm not used to stopping to take care of "me". It doesn't feel right. However, the reality is that I have been neglecting "me" for a while. In the past few weeks, I've been to the chiropractor several times. I've been to the dentist - and have a few more of those appointments lined up. I have seen a sleep specialist and even had a sleep study. I have a couple other doctor appointments lined up. Aside from the inability to sleep well or get enough sleep or even feel remotely close to being rested, I am ok. I'm just trying to take care of myself now.

I feel that, for the most part, I have been doing alright. However, the past week has been really rough for me. I can't explain how or when emotions will come crashing down on me like a wave. They just do. Those waves have been bigger and more frequent lately. I feel sometimes like I need to apologize for how I'm feeling...but I shouldn't have to.

I have moments where I have to keep busy. If I don't, my mind goes in to overdrive and I can't stop seeing certain memories. If I keep busy, it puts those off. For a time. I have moments where I have no energy for anything. I have moments which are relatively "normal". I think one of the hardest parts of the grief process is not knowing moment to moment what's next...how I'm supposed to feel in certain situations or in certain moments.

We also have moments, as a family, where we are doing things together. We've had more interaction with friends and neighbors than we have had in a while. And this is good. It helps. Granted, there are times when I don't feel up for doing things, and that is ok too. I hope it isn't taken personally. There are just times when I need space.

I took a rather large step yesterday in that I began working in Peyton's room, starting with her closet. Friends, let me tell you something. It is one thing to clean out your child's room in an effort to organize, clean and make things look better. It is quite another to pull clothes off their hangers, box things up, and "organize" because your child is gone and is never coming back. I will just leave it at that.

As for today and the coming days, I am just trusting in God to lead me through this time. I know He will and I know that there are good things happening and that they will continue to happen. I know that in the days and weeks ahead there will be more goodness - or, at least, they will be easier to see and experience. I am grateful to Him and I am grateful to friends who are standing with us during this time.

Life at Six Weeks

2013-06-17T23:22:00.000-07:00

Having passed the six week point on Saturday morning, I thought I'd share some new thoughts on this journey of grief and loss since it's been a couple weeks since I last wrote.

First, I have to say as the title suggests, my life right now seems to be marked my varying levels of stupidity. I feel stupid. All the time.

* I leave the room with a purpose. I take a few steps and eventually give up and go back to what I was doing because I have no clue for what purpose I was leaving the room.

* I get to the room I was heading to and suddenly it doesn't make sense. Why did I go in there at all? I look around as if to gain some wisdom by the furniture and fixtures in the room. Invariably, I will depart without a clue. If I'm lucky, somewhere on the way back to where I came from, something will click. Not necessarily the thing...but enough to get me to go back and ponder some more. Whether I'm successful in my endeavor or not is anyone's guess.

* I have found that the best place for leftover hotdogs are actually in the refrigerator, and not the dishwasher where the almost went the other night. Similarly, milk belongs in the bowl of cereal, not the bowl of sugar. Another near miss there.

* My keys. Seriously needing a homing device on these things!

* I often put something down with the intention of coming right back to it only to find out it's just gone. Gone. Not to be seen again for hours or even days.

* I have piles of emails, thank yous, and other various things to get to and my brain just feels fried. When I do write, I'm frustrated by my super horrible scrawl that has developed over the years.

* I am still so tired. I had started on a low dose Ambien which was then switched to a higher dose. I immediately felt a difference. Although I still wasn't making it all the way through the night. Now, I can't get to sleep even with the higher dose Ambien, so here I sit writing a post at 1:48 am when I should have been asleep a few hours or so ago. Also note, that while I am unable to sleep, my body has reacted to the medicine, so I'm a stumbling fool if I try to get up for any reason. Bear that in mind as you read!

* Emotions still come in waves as I wrote once before. I imagine it will be like that for some time.

* I am having a really hard time thinking of things "down the road". I am living and beign and existing in today. All I know about tomorrow, next week, next month, and so on will come, God willing - but I am incapable of formulating thoughts or plans about things that are too far out right now. And by "too far out", I might even mean 6 hours from now on some days.

We began a new series at church this past weekend. The same series was done last summer. It's called "At The Movies". Last year it was 4 movies. This year it's 5 different movies. 5 weeks. 5 messages pulling biblical truths out of each movie. This weekend it was week 1 - Here Comes The Boom staring Kevin James, Salma Hayek, and Henry Winkler among others. Hilarious movie, by the way, if you haven't seen it. Watch it - there are so many things that could have been pulled from that movie to create a sermon. {Note, we aren't watching the movie in church - just a few clips to accompany the sermon.} However, the take the pastor took on the movie was something I hadn't thought of in that way. Not exactly. I didn't expect to cry during a sermon about that movie.

What was the truth pulled out? Essentially it was that every man needs a cause bigger than himself to live for / fight for. As the message went on, all I could think of was Peyton. Peyton was my big cause. While I had a husband and another daughter who we tried to maintain some semblance of "normal family life" with, I had a 24/7 cause in Peyton. She was a "cause" from day one. She was a "cause" that continued to become a bigger and bigger cause until 11 days before her 7th birthday when she passed away.

Unless you have been a caregiver to a medically fragile and special needs child or even to an aging parent or grandparent or other adult, I don't think there's any way to accurately describe the level of care given to this person. You have to have lived it. It was the life God entrusted us with. It was not a burden in the sense that we felt like "why us" or "what did we ever to do deserve this". Those statements couldn't be farther from how we felt. You can, however, be charged with an assignment from God which is a difficult one. It might even wind up being the most difficult and challenging part of your life. It might be short-term. It might go on for almost 7 years. It might even go on for decades. You accept it though - graciously - as your God-given assignment for your life. For such a time as this was I placed on early - to be a part of the process of raising a little girl through her short life, which would include multiple health issues, 20+ surgeries, prescriptions beyond number, limitations I could never imagine, and needs which stretched me well out of my comfort zone, but which I tended to with as much grace as I could because I was her mother and she depended on me.

My cause.

My life.

The message went on about how some things are just worth fighting for - the cause that is bigger than yourself, the cause that shouldn't be shelved because you're uncomfortable with it, the cause that needs to be put out there to the world, and so on. We know that our cause will meet resistance when we put it out there. The idea of a band of brothers being so key was mentioned. It is true. Two are stronger than one. Many more together are even stronger. But I was feeling lost by this point.

I got teary eyed as soon as it was mentioned that every man needs a cause worth fighting for - a cause bigger than himself. Yes I have Ron and Moira. But my "cause" was the nearly 7 years of championing the cause of Peyton. My cause is gone and the everyday stuff is over. Our phone is deathly silent - to the point where I've thought it was broken. It shows that all the calls we ever got, for the most part, were related to her. Connections with people we once saw regularly are severed by the fact that she is no longer present.

I know that Peyton's legacy must go on. I believe she is a very unique and special child by nature of who she was. Limitations and illnesses and all she was challenged with throughout her life. I believe she affected far more people than we could ever possibly know, and it makes me happy to think that someone's life may have been deeply altered for the better because of her. I know mine was!

But I don't know what my cause is right now. I'm lost. I am lost with out that cause being so ever-present. Yes, reconnecting with Ron and Moira is a part of what is happening now. That is extremely important. We will be fine. This all will take time. But I feel like I am supposed to have a personal "cause" bigger than myself and I don't know what that is now.

How do I find my cause? When is too soon to start working on that cause? I know I have to give myself some time and space now, but it would be nice to know what big thing is out there waiting. What is it that's out there ahead in my life that's bigger than me that I can work for and even fight for if I have to to make a difference in this world?

One Month

2013-06-03T21:05:00.000-07:00

At 6:12 am on Saturday, May 4th, Peyton slipped from our arms into the arms of her heavenly Father. One month ago today. How it is even possible that a month has passed is beyond me. Yet at the same time, it seems so long ago.

In just under 5 weeks we have experienced extreme heartbreak for the loss of our daughter, yet relief that her suffering in this world is no more. We have experienced the influx of family and friends visiting for what was an incredibly beautiful celebration of Peyton's life. We also said our goodbyes to these people as they journeyed back home again. The day after Peyton passed, I walked in to our church for Sunday service for the first time in over 40 days, comforted by being able to be physically present there once again. We very quickly experienced the first Mother's Day minus another precious child - three quarters of my children no longer with me. We then went through Peyton's seventh birthday without her here with us. We also journeyed into the month of June - the first month in seven years where Peyton was not physically present. I don't know why that is so hard for me. So many "firsts" in such a short amount of time.

I don't question "why" this had to happen because we always knew that Peyton's time with us would be short. We didn't know how short. Each day we had with her was a blessing. I believe that God allowed us to care for her for the perfect amount of time. His perfect amount. If it were up to me, she'd have lived a lot longer. But, really and truly, to have wished her a longer life would have been cruel in the condition she was in. I've said over and over that my heart rejoices in the fact that she was made whole and is in her new body which can do everything it meant to do, unlike her earthly body. To look at me as I write this, you would not know the joy that comes from knowing that based on the overflow of tears streaming down my face. Just as my heart rejoices, it also aches with longing to see her. To touch her. To make her laugh or smile. To hold her without being afraid of breaking her. How I wish I could have been holding her at the end, but to do so would not have been comfortable for her. I would never have wished to cause her any undue comfort - especially not to benefit myself and my desire to hold her one last time. Yet, if having her here again right now would mean having her in that same sick, broken body - then there is no way I would wish that on her.

And so we grieve. Each day is different. And it's different for each of us. It hits us at different times and in different ways. We get through those waves of grief and we keep pushing forward. There are good times, yes. Some smiles and laughter even. Sometimes funny things aren't funny. Other times, "normal" things in life seem suddenly stressful and overwhelming. I have times where I just need my space. I don't know if that's right or wrong, but it's what I need sometimes.

Lately, I have been working through my own physical issues. I've set up a doctor appointment for my annual visit {oh joy!}. I need to be sure to keep on top of that. I began going to my chiropractor once again after a long hiatus. Even my dental work has fallen by the wayside. I have needed some particular work done for probably 2 years now It's finally getting done this morning. There will be more to come, but this particular issue is that far behind schedule in being taken care of. My stress causes me to grind my teeth and essentially caused some "earthquake" type activity in a few of my teeth from the pressure of grinding my teeth so badly. Then there's the issue of rest. I'm not getting it. I am sleeping so poorly these days. I contacted my doctor about that again. I personally think my issue goes beyond needing something to help me sleep. I'd like to get a sleep study done to see if there's more to my problems than just an inability to fall and stay asleep. Bit by bit, I'm working through all of these things.

I'm still feeling overwhelmed with what all will have to be done in terms of Peyton's room and all her things, but it's too much to handle right now. I've made little tiny bits of progress here and there. Not so much that you'd notice if you walked in, but I know what's been done, and small though it may be, feels like a huge accomplishment to me.

Beyond the figuring out what to do with "things", there's the figuring out of "me". I feel a little lost - like I'm not sure who I am right now without being that caregiver. Yes, I am a wife and a mother and we are working on spending more time as a family now - all of those are good things to work on. But my identity was so tied up in Peyton's every single day for years and now that she isn't here, neither is that identity. Yes, I entertain thoughts of returning to school to become a nurse but, first, it's not the right time right now. Second, it's not free. Third, there's a wait list - and that makes me wonder just how soon I might need to act on things just to get my name on a list so I can start school in a couple years. Then there's the part of me lacking in self-confidence who can't stand going places without someone I know - how would that Sarah even make it through?! Forget the fact that the entire class would likely be of an age where they could technically be my children! There's a lot to consider. Not today...but someday.

Perhaps all the overwhelming thoughts and worries are contributing to my seeming lack of a brain lately. I suppose it is good exercise to run up and down the stairs with a purpose, only to forget what that purpose was as soon as I get to the room I only think I'm supposed to have gone to...that time. Yes, it is possible to check a single pants pocket at least a dozen times and not find the key that was in there until hours later when I threw the pants in to laundry and the key fell right out of said pocket. Clothes must be in the washing machine in order to be washed. The same is true for the dryer. Contact lens solution doesn't belong in the shower. The first place I look for my keys shouldn't be the refrigerator. In order to have a conversation with someone, all the facts must come out - not just some of the facts, causing your listener to wonder what's missing from the conversation {unless of course that person is Ron - he's pretty sharp and can almost always fill in the blanks of my cryptic conversations}. I know for a fact that these behaviors can be blamed on grieving a loss. Let's just go with that, ok?!

Matthew 11:28

New International Version (NIV)

28 “Come to me, all you who are weary and burdened, and I will give you rest.

Waves

2013-05-29T18:19:00.001-07:00

Grief comes in waves. Some days {or even moments} feel as though I'm wading in water, with small even ripples of water making their way towards and past me - silently though I'm constantly aware of their presence. It's not painful. I can make my way through these waters, even though I'd rather not be in them to begin with. Suddenly, though, a larger wave will strike from out of the blue, nudging me not so gently off my somewhat solid footing. I stumble and regain my composure and I continue on. These waves strike fairly often, though I have no way of predicting how or when they will make their appearance. They just come and I have to work a little harder to get through them. Not quite so often, an even larger wave will crash into me, knocking me backwards - even off my feet. If feels impossible to move past this wave. It strikes unannounced and it stings. It is sharp and painful and it brings with it a flood of memories and emotions. I have no choice but to try to get back up and to try to carry on.

That is what life is like these days. I don't know that I have huge swings in my emotions all the time. Every now and then, though, one of those sharp waves will hit and it is just so hard to get past. I would say that for the most part, however, it's more of a constant awareness of this great loss of ours that I am feeling. I miss Peyton so much and it just hurts so much. I'm getting by without too many huge breakdowns, which is good. I never know what is going to trigger one of the bigger waves of emotion {even the medium waves}.

It's odd. I'm having a really difficult time with the thought of moving out of the month of May. Peyton was still alive at the beginning of this month. She only lived not even four full days this month, but she was alive as we started this month. To move into a new month that she will never have experienced does something to me. I'm not sure why.

I haven't been able to go through very much of Peyton's things. Every now and then I'll look through a cupboard in the bathroom or in her closet. But not much has been done. A few little things, but not much overall. It'll happen when the time is right. And it's not right - not right now.

I can't believe that just a little over two months ago we had no idea we'd be where we are right now. She was admitted to the hospital on March 26th. Who knew then that she'd only have 40 more days left of her too-short life. It's just so surreal that she is no longer here with us. I don't know that I can ever get used to the four of us being only the three of us.

I'm sure many people wonder how I could have handled 40 days on one of those couches in Peyton's hospital room without winding up with a seriously messed up back or other issues. Believe me when I say that I slept far better under those conditions for 40 days than I have been sleeping in the last 25 days since I've been home. I am not sleeping well at all. I've never really slept "well", but I'm really not sleeping well now. Some days I'm tempted to turn on Peyton's oxygen concentrator just for the familiar sounds so "soothe" me to sleep. It's too quiet now. I did get a prescription for a low dose Ambien to help me sleep. Yes, it helps me "relax" so I can get to sleep {sometimes}, but I don't stay asleep, and the quality and amount of sleep I get is not good. Time to contact my doctor again.

Aside from the sleep issues, my body is revolting against me. I've had back issues for years, but the stress of the past couple months - particularly the past few weeks - has earned me a few giant knots in my muscles. My muscles feel like steel cables in some places. No, I'm not that fit. I'm just that stressed! For some reason, though, in the past few days, all of that stress has come out through my neck, shoulder blades, shoulders, arms, hands, and fingers. The burning pain through my arms has driven me to tears, it's so bad. Simply lifting my arms can send me over the edge. With some Tylenol, I can eventually get to a point where it's not as bad, but by evening, it's bad again. I did have a long-overdue visit to my chiropractor this afternoon. It helped a lot, but then everything was more sore from being worked on. I'll go back again on Friday. Hopefully I can get past this soon. This is not fun. Not fun at all.

This is life right now. Yes there are some smiles and laughs here and there too. It's not all tears and pain. But it's a painful time right now. I'm just so fortunate to have a loving and supportive husband and to be blessed with so many friends and family lifting us up, encouraging and supporting us during this time. I am so grateful to have them in my life right now.

As always, I appreciate your continued prayers as we journey through this time of loss.

Living In the Moment

2013-05-20T14:27:00.001-07:00

When I hear the phrase "living in the moment", my mind jumps to thoughts of living freely - in the moment - being carefree, living for the now. Now, however, when I think of "living in the moment", it's literally living in this moment because this moment is all I can handle right now. Right now. Not a couple hours from now. Not tomorrow. Certainly not next week or next month. Now.

Since Peyton passed away on May 4th, life has been a blur. There was a flurry of activities surrounding taking care of what had to be taken care of and planning for her memorial service. Most visitors left the following day. We had a few more days before we were on our own as a family of three. Three. That number still doesn't sit right with me.

Ron was off work through this past weekend. It made a huge difference to have him here. Moira had gone back to school the week after the memorial service, so it was just the two of us for a little bit each day while she was at school. We were able to take care of some things and just "be".

As the calm descended on our home, so did the stark realization that we are not four, but three in this house. There is no home nurse here twelve hours each day. It is so strange to be upstairs with no one at all downstairs in the bedroom which was Peyton's. When we leave our house, we have to lock up because there's no one staying behind - no nurse; no Peyton. When we get into our vehicle, there's no huge but comfy looking special needs car seat in the back, but plenty of space to seat a couple extra people if needed. When we return home from being out, there's no nurse to say hello to and tell us how Peyton did while we were out - because there is no Peyton there. Just a great empty feeling in our home and in my heart.

While we still had visitors here, I became hyper-sensitive about things. I new I had developed a sense of what my limit would be each day. There is a limit on things I can tolerate each day. What can I tolerate? Church is good. Being with my family is good. Spending some time with friends is good. But there are things which I don't want to hear about or talk about. There are situations I don't want to be in. There is a limit. And it changes. I'm sure that might be a bit frustrating for others since I can't necessarily say from one day to the next what it's going to be!

Peyton would have been seven on the 15th. Ron's birthday was the 17th, so friends of ours invited us to come over to their place for dinner, cake and just to celebrate both birthdays which I thought was very thoughtful and it meant so much to me that they would think to honor Peyton's birthday for us.

The past few days or so have gotten more difficult for me. As the day to day "calm" sets in, so does the reality that this new life we are in is it. Three of us. The ache in my heart grows each day. I miss Peyton so much. I know she is fully healed and is rejoicing in Heaven with Jesus and with her family that has gone on before her and I would never want her back on this side of Heaven just knowing that she can walk, talk, run, see, hear, dance, and so on. I would never want her back here if it meant giving that up to return to a life of illness, disability, pain, and so on. I trust in God that He is taking wonderful care of my little girl, but I just miss her terribly.

As I go about my day and think of what all we had to do for her {nurses and/or myself}, it is amazing at the time that has suddenly been freed up. I don't say that as if to suggest any time spent caring for her was a burden - I would do it all over again if I had to. But there's these vast spaces of time in our day where there's just nothing. No breathing treatments. No play time. No diaper changes. No tube feeds. Nothing.

And my calendar? Well, it's about as bare as it's ever been. There's still the odd previously scheduled appointment that makes an appearance and I look at it and think, well, I guess we won't be going there today. But it's funny. As big of a deal as it was to get Peyton ready to go to an appointment - even if it was by medical transport {ambulance} once - I miss it. My life revolved around Peyton and her medical issues. The vast majority of people I knew, outside of church friends and a couple non-church friends, were doctors and nurses. I said to Ron today it's like someone threw up a restraining order and I'm just cut off now. Even if I didn't see these people outside the walls of MUSC {although one of her doctors does attend our church}, they were still people I interacted with. Maybe it's odd to say I miss all those doctors and nurses - but I do. And the home nurses. How could I not miss people who were with me twelve hours a day?!?! {Note: if anyone reading this does fall into one of these categories...feel free to contact me - there's a few options over there on the right sidebar --->>>}

So, for now, as I go through each day, I find myself more sad more often. I rejoice in her healing, but the loss is palpable. I cry a lot. I got 15 minutes of sleep last night. Yes, you read that right. Minutes. I find that I must occupy my mind in some way or else my mind drifts quickly to thoughts of Peyton and how she was before the hospitalization; how she was during that hospitalization; and how she passed from this life. If I try to sleep, my mind goes right there and I break down. That's how I've been doing the last couple days.

I so appreciate the love and support we have received from everyone during this time. It has helped tremendously. It is incredible to see how Peyton impacted so many people in such a short life. Please keep us in your prayers as we deal with the grief of our loss, each of us dealing with it in our own unique way.

Seven Years

2013-05-15T06:16:00.002-07:00

Seven years ago this morning, we welcomed our precious Peyton Elisabeth into this world. We did not know in that moment that our world was about to be changed in far greater ways than we could ever have imagined.

In nearly seven years, Peyton taught us far more than we could have ever hoped to have taught her. She taught us about life and the value of it. She taught us about perseverance. She taught us about priorities. She taught us about the lengths to which we would be willing to go for another human being. We thought we knew what love was before Peyton, but she taught us more about love than what we knew was possible.

For almost seven years, our family's "normal" life was so far from what most of society would call "normal", yet it was normal for us. Yes, we struggled along the way. Yes, there were hardships. But there were also so many blessings and joys experienced because of who Peyton was. Peyton's life may have been short, but it was not without value. It was not without purpose. I believe that her purpose extends beyond her earthly life. I believe that this world is a better place for her being a part of it.

I imagine that Peyton is having the most amazing birthday party in Heaven today, along with her brother Jeffrey, her Granny, and all those who have gone before her. I miss her terribly today, but she's celebrating with Jesus!

Happy birthday, sweet Peyton!!

1 Corinthians 13:13

New Living Translation (NLT)

¹³Three things will last forever—faith, hope, and love—and the greatest of these is love.

A Great Void

2013-05-13T15:01:00.004-07:00

It has been nine days since our precious Peyton went to be the the Lord. I cannot help but rejoice for her that she is no longer sick, no longer in pain, and no longer suffering. I cannot be sad for this sweet girl who is dancing, walking, running, talking, seeing, hearing, and doing so many things that she could never do here on earth.

But I weep. I weep for the loss of my youngest daughter. I mourn the loss of the little girl whose many needs filled my days. It is strange being home after having spent 40 days at the hospital with her. It was strange to feel the air outside, to sit in a car, and to enter my home without my daughter.

The past nine days have passed quickly. May 4th seems like yesterday but it seems like an eternity has passed. Out of town visitors have come and gone. A visitation was held. A memorial service took place. We said our goodbyes to the earthly body that was Peyton.

We went to church as a family on Sunday, May 5th, a mere 27 hours after Peyton passed from this life. We couldn't imagine a better place to be than with the church family who has supported us for so long. We went to church on Sunday, May 12th, Mother's Day. It was good to be among our church family but I felt the absence of Peyton in a profound way.

We picked up Peyton's urn this weekend. Another event to add to the ever-growing list of things that make her loss so real.

We picked up her death certificates today, again making this even more real - and "final". Just as Peyton had a lengthy list of health issues in life, her death was marked not by one cause but by several. The only thing I know for sure is that her death did not come as a result of Ron and I making the decision to peel back all of the medical interventions that were sustaining her. People have wondered what happened because she passed so quickly after that meeting we had with the doctors on Wednesday, May 1st. The truth is, before we did a single thing, Peyton's health began to decline on its own. By Thursday morning, before we removed any medications, Peyton had fluid building up on her lungs. By Friday, after we'd removed the final supportive thing, we found out that Peyton had tested positive for stenotrophomonas pneumonia, which is not curable and was indicative of an end of life process. Had we not made the decision to take a palliative care approach, Peyton would have passed away as it was. Yes, things happened quickly. After some amount of pain control was needed, she was finally comfortable and she did pass away peacefully.

The adrenaline that has kept me going since the 4th has been wearing off, particularly in the past day or two. I find myself discovering that there are limits on how much I can do as it relates to the things like the disposal of all of the beautiful flowers, most of which are past their best now. I find myself needing space and "alone" time.

My body aches. My muscles scream out when Ron tries to rub my neck or back. I feel like my body is held together by steel cables, not muscles and soft tissue.

Given where Peyton is now, it would be purely selfish to want her back here. But I miss her so much it hurts. I would love to hold her again without fear of hurting her poor broken little body. I would love to hear her laugh, see her smile, and just have her back.

And so we journey through the early stages of our grief - differently, yet each of us grieving the loss of our daughter and sister. We've got a long road ahead of us. I know I, for one, am feeling a great void in my life. I am not sure how to fill the hours that she once filled. I am not sure what our "new normal" is supposed to look like for the three of us.

I know we'll be leaning on God now more than ever. He will sustain us through the difficult days, weeks and months ahead.

Visitation & Memorial Service

2013-05-05T15:10:00.002-07:00

We have finalized the details for Peyton's visitation and memorial service. You can view her obituary online and find all of the details here:

http://hosting-25037.tributes.com/show/Peyton-Elisabeth-Fontenot-95756921

Please forward this information as you see fit.

Thank you so much for your support during this time.

Peace

2013-05-04T08:18:00.001-07:00

With deepest sadness, I am sharing that sweet Peyton went to be with Jesus this morning. She passed peacefully at 6:12 am. She is now playing with her big brother Jeffrey in the company of Jesus - running, walking, dancing, seeing, hearing...doing all the things she wasn't able to do here on earth.

Arrangements are pending at this time. I will share when we know the details.