My (un)Planned Son

A Re-imagined Christmas List

noreply@blogger.com (Melissa) — Tue, 11 Dec 2012 17:32:00 +0000

I'm kind of at my wits' end with Christmas lists. Are there things we'd like? Sure. Are there things we need? Not so much. But still we go through the process every year of looking through catalogs, daydreaming, and scrolling to find just those additional things to fill our house to (over)capacity.

So why then do we make Christmas lists? Certainly we are honored by loved ones who choose things that they think we'd like or might need. And sometimes there are things that we wouldn't buy for ourselves but are still nice to receive.

But in light of that, how do I raise children who are not focused on material possessions when each year we get to make a list of what we want and give it to people to buy for us?

I've been challenged to start a new tradition. A new kind of Christmas list.

We plan to sit down with our kids and ask each of them to make a new list, a list of at least three things that they'd like for us to do for someone else, someone who is not part of our family. Something big.

We would do the same and we'd then compile all the lists into a "Family Christmas List," choose one item to do on Christmas Day, and complete the rest of the family list by the next Christmas. Now that's a Christmas list!

Now of course, upon having this revelation, my first (fully and sinfully human) thought is, "What if my child wants to give a million dollars to a homeless man? I'm going to have to tell him that we don't have a million dollars to give. And maybe the man wouldn't spend it right. And maybe there are others who need it more."

But shouldn't I just be happy that my child would be so generous as to have that intention?

And shouldn't I realize that God could easily provide the means by which to give someone a million dollars? I mean, the recent Powerball was what? 550 million? And that surely wasn't even God....

I write, dear friends, so that this intention will not remain just that, an intention, but instead flourish into an action and then, a tradition.

So who will make a new Christmas list with us? Or who else has a tradition of particular acts of service around Christmas-time?

Who you are

noreply@blogger.com (Melissa) — Sun, 14 Oct 2012 19:41:00 +0000

I heard a song recently and one line particularly stuck with me. It said, "sometimes pain's the only way that we can learn."

Maybe that's true. I found my true self on April 6, 2009, lying flat on the floor sobbing for the life of my child.

But what if that hadn't happened? What if Hunter Syndrome were never part of our lives? Would I have continued on in my mediocre, "I'm a nice person and I know that God is there for me" life?

I hope not, but quite possibly.

If you, my dear and few readers, have not had a life-altering, what I call "Come to Jesus" event in your life, I hope it never takes that for you. And if you've had that event and it's not changed you, then I pray it will.

As the song notes, "You can never fall too hard, so fast, so far that you can't get back when you're lost. Where you are is never too late, so bad, so much that you can't change... who you are."

Thankful for that.

I want to be a peach

noreply@blogger.com (Melissa) — Wed, 26 Sep 2012 18:08:00 +0000

We were not meant to have a mediocre life.

We were meant to live a radical, blessed, edgy, open, screaming about the love of Jesus life.

I've heard people sometimes being referred to as an onion, and even in the movie The Blind Side, Leigh Anne and Michael are each referred to as onions, where you have to peel them back one layer at a time.

But I don't want to be an onion. I don't want people to only see pieces of me at a time, to not know the real me until layer after layer is revealed.

I want to be a peach.

I want to have just enough skin to hold the bursting flavor inside. And when the skin is open, I want to burst forth with the sweet scent and taste of trueness, compassion, and radical love for Jesus.

I want people to see that underneath that sweet soul is a hard rock, a pit that is not a pit, but instead the unbreakable core of my life that is my Lord and Savior.

I want to be a peach.

I have a confession

noreply@blogger.com (Melissa) — Mon, 27 Aug 2012 18:43:00 +0000

I have a confession. I've been advocating and writing about rare disease which makes total sense since Case's condition is, in fact, what they call ultra rare. But lately, I feel like I've been hiding something. Not on purpose, it seemed like it was a temporary thing at first, it was really just nobody's business and in the grand scheme of things, it did not approach any level of importance compared to Case's challenges. But as things progress and it consumes bits and pieces of my life, it has felt like keeping a secret to write and write but never mention it.

I have a rare disease. It will not kill me. It is not anywhere on the plane of the challenges faced by Case and other children with special needs, but it is there. In fact, I did not even know it was considered a rare disease until I delved deeper into advocacy and kept seeing it mentioned.

I have something called CRPS or Chronic Regional Pain Syndrome in my left hand and arm. It was caused by a wrist sprain in July 2010 and it continued to get worse until it was diagnosed later that year. CRPS is a chronic pain condition that can affect any area of the body, but often affects an arm or a leg. Doctors aren't sure what causes it, but they suspect it involves overactivity of the sympathetic nervous system.

For me, it involves numbness, pain, itching, twitching, soreness, dystonia (involuntary movements), extreme sensitivity, coldness at times then swelling and heat at others. Medication helps. Sometimes. Nerve blocks help. Sometimes. But then medications and procedures have their own side effects.

If my hand is in a pocket, underneath my armpit, or wearing a glove, now you know why. If I'm rubbing my hand or arm, now you know it is because it hurts, it itches, or is numb. I have trouble with opening things. I drop things. I compensate in driving, opening doors and other tasks with my knee, foot, or right arm. I had to drop my entire workout regimen two years ago and have yet to return. I have to tell my kids not to grab my hand and often just give in. They are just kids and what do they know of pain?

Case wants to be carried, his chair needs to be carried and as I've said before, there is no "carry fairy" in our life so of course, that is what I do. Typing is the worst, so writing, my joy, is often slow, error ridden, and often has painful repercussions as well. But it will not kill me. So ... what?

Over the last two years, I've had multiple stellate ganglion blocks, doctor appointments, medication changes, and hand therapy visits. I've switched medications because of falling asleep. I've put on significant weight and I have side effects. My left arm does not feel as if it is part of the same body as the rest of me. But I am somewhat at a loss. While I have seen some improvement since I was first diagnosed, it remains a part of my life every single day.

This week felt burdensome, which is why I felt compelled to write, to connect. My pain doctor is now seriously discussing an implanted spinal cord stimulator versus more ganglion blocks or ketamine blocks, but I went ahead and scheduled three more ganglion blocks for now. I don't think I had fully accepted that I may face this the rest of my life. It was a wrist sprain! Two years ago. TWO YEARS ago.

What is most difficult, I think, is the loneliness. I do not look like I'm in pain. I strive to act as normal as possible not only because that's how I choose to live but also because continuing to use my arm and hand normally is what my doctor feels will help prevent it getting worse. But while I look like I'm making lunch, I am continually fighting my brain's signals of both pain and to not use the arm, to roll it up and pretend as if it's not there. I know that sounds strange, but that is how it feels.

Of course, there are definitely good days too. But driving to the clinic alone to have a big needle stuck in my neck while I'm fully awake is ... lonely. We have so many pulls on our life.... I sound as if I want pity. Not pity, just not to feel alone. So I now describe it to you, my friends, so I don't feel so alone. But I need to remind myself that I'm never alone. God foresaw and will use even this.

In the grand scheme of things faced by our family, this is but a speed bump. It just happens to be a long one.

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.

James 1:2-4. I'm sure working on that perseverance thing.

Every step of the way

noreply@blogger.com (Melissa) — Sun, 26 Aug 2012 00:06:00 +0000

It was like that reminder, the one that you stumble upon when you weren't even looking for it.

My friends and I (to say that, it sounds so simple)....

Well, my friends and I

the friends that I never knew that I'd have

the friends from far-flung places who would have never crossed my path before,

the friends who share "common things" with me, but not really good common things...

Those common things are

disease and doctors,

needles and nurses,

sadness and sorrow,

but which common things are also

joy in the simple,

laughter in the pain,

and love for the children.

This reminder, on the steps of a church, at the end of our day's folly, were so sweet and enduring. HE is with us ... every step of the way. Sometimes it is hard to see, to know, to remember, but He is there.

Why? Why my child?

noreply@blogger.com (Melissa) — Mon, 13 Aug 2012 05:23:00 +0000

Why?

That is a word that is heard often in the world of rare disease. It's a word that is often heard in life.

Why did this happen to my child? Why him? Why our family? Why would a loving God allow something this terrible?

God spoke to me through a Nigerian man. A man of faith who has partnered with our church in his ministry for some time. His lessons speak of real persecution, as often happens in his country unfortunately.

Suicide bombers driving onto church compounds. Taking two hours to get to church on a drive that should take 15 minutes because you have to go through military checkpoints that are searching for weapons and bombs. Walking through metal detectors to walk into services. It is that situation that I thought of when I recent wrote about the idea of being an American martyr.

He spoke recently and as he stepped up to speak, I eagerly anticipated his insight, his challenge to our comfortable lives.

And so he began with Ephesians 6:19, "Pray also for me, that whenever I speak, words may be given me so that I will fearlessly make known the mystery of the gospel."

Although I had just written these same words last month right here on this blog, his reference point was much different than mine. For him, fearlessly meant without fear of death. For those of us living in relative religious freedom, it is simply without fear of ridicule. I am definitely not in his league. But it did remind me that God can use all of us in our own mission field.

Before coming to church that morning, I had read the devotional from the Baptist Bible Hour app on my phone. It just happened to be about Comfort and spoke of 2 Corinthians 1:4:

Who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.

It reminded me of how we are used by God in those places that sometimes hurt our heart the most, but in sharing that pain and in comforting others, it both can help others and in some ways, heal our own wounds.

So I'm sure you now know the passage from which he taught that morning? That very one. Specifically, he spoke about the reasons the Bible gives for suffering from 2 Corinthians 1:4-11.

That we may be prepared to comfort others as God has comforted us.
That we may learn not to trust in ourselves, but be dependent on God to sustain us.
That we may learn to give thanks in everything.

The why? First, God's ways are so much higher than mine that I don't pretend to fully understand. But second, there are amazing reasons why - so that we can comfort, depend on God, and give thanks. It may be difficult, it may be frustrating, it may be incredibly and excruciately heartbreaking, but God has not left us without understanding.

I can truly say that those are lessons God has been trying to teach me my entire life and I still don't have them down. When things get easy enough, it is just as easy to slip back into depending on our own strength, smarts, funds, and planning.

I can't say that any of us would ask for more suffering in order to learn those lessons better, but I simply pray that I can learn them.

Making it to the Lost & Found

noreply@blogger.com (Melissa) — Sat, 23 Jun 2012 18:33:00 +0000

What item of yours would make you almost pass out of you lost it? Or what about if you left it in the waiting room of a hospital and went home? Or if you left it sitting on the floor of a building lobby, next to a display cabinet, and spent the next hour having lunch? Or I'd you left it next to the claw game in the lobby of a Red Robin restaurant and then went home and took a walk before you realized it was missing?

Your iPad? What about your purse? Your wallet?

This describes my last month.

I left Case's iPad in the waiting room of pre-care at UNC Memorial Hospital. I left my purse in the lobby, sitting nicely next to the dollhouse display. I left my wallet sitting next to the games after we ate at Red Robin and we took pictures with the Statue of Liberty display.

Three different weeks. Three different places. Three different items.

And you know where they all ended up, completely and utterly safe and sound?

Can you find my brown wallet behind them?

The Lost & Found.

I can't explain the gratefulness I feel that God would protect my belongings, things that mean nothing in the end, but which are so incredibly helpful to the current crazy life we are living.

How often does that happen? Getting back three very valuable things left out in the open, subject to anyone's money-desiring whim? Amazing.

It gives me an analogy to our lives.

We live as lost human beings. Lost of a final purpose to our lives. Lost of an understanding of who made us and why. Lost of the knowledge of what happens when we die.

But the prayers of others, the finders, and the searching of our hearts bring us to the Lost & Found. Only there can our owner, God, claim us. He cannot bring us back to Himself if we, of our free will, do not want to be found. If we hide in our secret place or get taken up in the whims of another philosophy, we will live out our days without fulfilling our ultimate purpose, in the care and embrace of our true owner.

So if we make it to the Lost & Found, there is no chance we will just sit there. Our owner is always looking for us, to claim us back to Him.

I've never been a great writer

noreply@blogger.com (Melissa) — Mon, 14 May 2012 12:03:00 +0000

I've never been a great writer, a creative writer at least. Oh, I liked legal writing. It was structured and formulaic. But the writing I've been doing this past year is anything but. It is raw. It is painful at times.

When Case was diagnosed, and then when he was to enter the clinical trial, I felt like God set tasks before me of creating Case's blog and writing posts that I was wholly unqualified to do. But God was certainly qualified when I called on Him. "When I called, you answered me; you greatly emboldened me." Psalm 138:3.

Just Friday, the painful side of writing became clearly evident. I wrote about a video of a family in the year after the loss of their son to Hunter Syndrome.

But did I really write it?

I think the answer is clearly no. And here's why.

About a month ago, a friend told me about a video, a powerful video, of a family who had lost their son. I asked her how to find it, but she said it wasn't easy to find on YouTube since it wasn't tagged with Hunter Syndrome or Mucpolysaccharidosis. I let it go.

Then about two weeks ago, a did a random search of "Hunter Syndrome" to see what would come up. I scrolled through a few pages and stumbled upon the blog of a mom who talked about meeting a Hunter Syndrome mom at the park. She embedded the very video my friend mentioned.

I watched it.

I felt compelled to write and the words just poured out.

I knew that I needed to watch the video again to finish writing the post, but I just couldn't. I could feel the powerful emotions inside about the potential loss of my son and I just had to set it aside.

It sat there for over a week but I knew I wanted to finish it before MPS Awareness Day (May 15th) so I thought it would be good if I finished it by Friday so it would be there over the weekend before.

That was the extent of my consideration on the timing.

Originally, I had titled it "Anticipation ... and kites".

I needed a picture of kites so I picked one that had two, including a pirate kite like the one in the video.

Oh, I am so feeble minded.

Here is what God did with that feeble post.

He knew that Sunday, today, was Mother's Day.

He knew that mothers who had lost a child might need that gentle reminder that they and their child are remembered and loved by so many. He knew Brigham, the wonderful boy from the video, had passed on May 15th in 2009. May 15th.

I never picked up on the timing of those events the entire time until after I posted. Yes, I can be that thick.

He knew that the picture of the two kites showed the intersection, the battle, the struggle between life and death.

I knew that the title just wasn't right, but I had titled it at the very beginning and you usually go with your gut. But God knew it wasn't about the kites.

It was about the flying.

God is the writer. I am just a vessel.

Paul said it best, and I certainly don't pretend to be on a level with him, but I would make the same request: "Pray also for me, that whenever I speak, words may be given me so that I will fearlessly make known the mystery of the gospel." Ephesians 6:19. Well said Paul. I think we may have had the same writer.

Raise your hand if you want to be an American martyr?

noreply@blogger.com (Melissa) — Thu, 26 Apr 2012 13:19:00 +0000

I was watching a TV show the other night where a mom had been kidnapped. The kidnappers wanted information from her and they were torturing her to get it.

It struck in my mind the analogy to Christians who are tortured for their faith either in the past, like in the Bible, or presently in some countries. The torturers generally want them to renounce their faith, tell where other Christians are, etc.

And it made me think, what does it take to withstand that? It seemed to simply be this.

Loving God more than we love our lives.

Because if you love God truly and deeply, then you trust that what He said is true. That when you die, you will go to Heaven. That we are to proclaim Him and Jesus to the highest heights and farthest reaches of the world. So, obviously, proclaiming Him would not include giving in to torturers. And if you didn't give in, you fulfill God's calling and you go to Heaven.

But what about the circumstance where you want to live. Maybe you have children, like the woman in the TV show who said she was not ready to move on as her torturer discussed different religions and their take on an afterlife.

Of course there are many, many things about this world that we love, not the least of which is our children.

But it becomes about what you love more.

Would there be so many Christians in the United States if we were at risk of being shot every time we walked or drove to our church? If local gangs raped us women and took our children because of our faith, would we use the term Christian so loosely?

Or would we love our life more?

American Christianity looks a little different than that. It is unlikely that we'll ever be faced with that life and death decision of choosing God or something else. But what we love more may come out in many of the smaller choices that we make every...single...day....

     What movies do we see?
     What type of language comes out of our mouths?
     How do we spend our time?
     Is our focus on how to do what we want or how to fulfill what God wants?
     Are we fearful of death?

Do we love our life more than we love our God and His promises?

Who made you?

noreply@blogger.com (Melissa) — Sat, 21 Apr 2012 01:08:00 +0000

Sometimes it is difficult to know exactly what Case understands and what he doesn't. But tonight, I wanted to catch his full eyes and see if he could really intake and comprehend that I love him and that God loves him. And then, I said "Case, who made you?"

He smiled and clapped and yelled, "GOD made me!" and started singing The B.I.B.L.E. at the top of his lungs.

I think he's getting it. :-)

The blessings of late nights

noreply@blogger.com (Melissa) — Fri, 24 Feb 2012 05:30:00 +0000

I had planned a thoughtful post, filled with the revelations I've been seeing lately, but to be honest, I am tired. I sit here after midnight, which is not unusual, looking at piles of paper for IEP meetings, taxes, e-mails and calls to be returned, paperwork for doctors to sign, and Case's infusion and neurosurgery check-up staring me in the face in the morning.

I am weary. And then I'm feeling guilty that I'm weary. We had a wonderful day today. There are those much worse off than me. There are those I know who have lost their children recently. There are those I know without jobs. Who I am to complain?

Complain, I should not. But, still tired I feel. I am wholly insufficient for this work. But I often still try to do it on my own. Why do I do that?

"'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me."

2 Cor. 12:9.

God is sufficient. And frankly, when I think about it, if I went back to a life where I could delude myself into believing that I was strong enough, organized enough, smart enough, and energetic enough to get it all done, would I continue to realize how much I needed the Lord and his strength and grace every day?

Probably not.

So God, thank you, for all these tasks. Thank you for the late nights. Thank you for continuing to sustain me throughout the next days. May I do it all for your glory.

The fabric of our lives ... is not cotton

noreply@blogger.com (Melissa) — Wed, 25 Jan 2012 15:30:00 +0000

I had decided that I had enough friends. We were preparing to move to a small town in Ohio, for only a year mind you, and I was content that I didn't need to make any new friends. I had great friends from college and from growing up and I was content.

But I guess I hadn't planned that I would meet one of the most dear families I know, and they just happened to live on the other side of our duplex. So we spent the next year laughing, playing cards, loving on their baby and preparing for the new daughter to arrive. At the end of the year, and before the birth of their baby girl, we moved away as planned. That was 13 years ago. We are still quite close.

So then we moved to Nashville. I had just added a wonderful friend, I had wonderful new friends that I was moving nearer to and would get to spend more time with. Again, I was content.

When Case was diagnosed with MPS in 2009, I didn't make the same mistake. I had wonderful friends. But this was quite a difficult thing to understand, and sometimes only those living it can relate.

So began my journey of having "MPS friends."

But MPS friends soon evolved into friends. Period.

And I reflect on this only because recently I've gotten to spend more time with some wonderful ladies in our town. We've crossed paths only because we live in Spring Hill, have children, and like to get great deals by buying and selling online with other families in town.

I've never been an "online talker" but we spent about four hours with laugh out loud, gut-busting conversations the other night while waiting on and enduring a thunderstorm and tornado warnings. Some were in their "safe place" and some of us chose to watch the storm.

This is my fabric. It is woven with friends who all crossed each others' paths for different reasons. Some are on the blue path, some the red, some the most colorful path you've seen, and some threads are tattered and frayed.

But they have created a tapestry, a fabric in my life that I cling to and cherish, for without them, my life would be a bland blanket of only the colors I had chosen, a few black, tan, red, and not much more.

Rejoice with those who rejoice; and mourn with those who mourn.

Romans 12:15. I am blessed enough to have friends who do just that.

I am also studying Job as of late, and while one can question the wisdom of Job's friends later on, one cannot question their love for and dedication to Job:

Then they sat on the ground with him for seven days and seven nights. No one said a word to him, because they saw how great his suffering was.

Job 2:13. What a blessing to have friends who would sympathize with us so greatly!

So when you are weaving your life, weave purposefully, openly, and lovingly. And leave room for others to step in and weave themselves into your tapestry.

You'll never imagine how beautiful it will become.

Just another lullaby

noreply@blogger.com (Melissa) — Wed, 04 Jan 2012 03:03:00 +0000

I don't pretend to be a great writer. I write because it is my journal and my release, and I write publicly because I hope that somehow anything or something I say might resonate with even one single person.

But sometimes I don't really bare it all, those deepest feelings of pain and fear, sometimes I hold those a little tighter.

I started writing from the beginning of this journey. Some things were just for me, but they have become a burden, keeping them inside. So there are things I need to let go. That first few days of such pain that I can barely revisit.

So here I am.

With tears still as I read it, and prayers still for the faith to live it.

Realized Case had Hunter Syndrome: April 6, 2009
Written: April 7, 2009

As I lay him down to sleep
I pray the Lord his soul to keep
And if his body is not well
I pray the Lord my soul to tell

As I bring myself awake
I pray please not my child to take
And if the Lord remembers me
I pray my prayer He will give heed

As I cry onto the page
I pray for faith and peace this day
For if my child is not for long
I pray the Lord will keep me strong

As I stare into his face
I pray for health for baby Case
But if God’s glory needs my son
I pray for most His will be done

Who is that crazy lady?

noreply@blogger.com (Melissa) — Mon, 02 Jan 2012 07:53:00 +0000

Someone might see me at times and think, "Just who is that crazy lady?" It might be when I'm singing the Barney song and adding my own little dance or when I'm pulling the imaginary horn in a chair choo-choo on the hospital stage.

I'm the crazy lady who's learning to live it like I mean it.

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34

It is difficult to be anxious about tomorrow when you are busy being joyful about today.

What once might have held me back from expressing my joy and possibly acting like a fool has been stripped away. I live by new rules.

Rule #1. At least once every day, purposefully make a fool of yourself in front of the kids.

I find myself belting out the Barney song with an invisible microphone, playing the air guitar to Phineas & Ferb, and dancing like I'm on an audition for Footloose. My kids absolutely love it.

A good bet is always to sing your heart out. Sing with your eyes closed and a pretend microphone in your hand. And dance. Never forget to dance.

Rule #2. Sit on the floor. It is much easier to be eye to eye with those short, cute people in our family. Sit on the floor in public. The jeans will go in the laundry whether they have floor dirt or seat dirt.

Rule #3. Tell wild and crazy stories, some made up, and some true. My kids love hearing about my first jobs, where I've lived, and my brothers when they were little.

Rule #4. Remember that you get a do-over every morning.

Rule #5. Ring around the Rosie. And don't forget that we... all... fall... down. And then the hokie pokie. And then ... If you're happy and you know it (and know it). At least once a day.

Omniscient grace

noreply@blogger.com (Melissa) — Tue, 15 Nov 2011 02:11:00 +0000

Sometimes we learn amazing lessons about God from our children. Unconditional love. Instant forgiveness. Pure joy.

But sometimes God uses our own words to our children to teach us.

We have a baby monitor to hear our kids at night. All three of our boys share a room and it lets us hear the fights and the early morning wake-ups lest Case wander outside, opening the garage and front doors, as he's wont to do.

As I prepared to turn out the light tonight, I could hear the whispering brewing in the air, even as I had just called for no more talking. I reminded them that I had a monitor and I could hear everything that is said. Although I don't run upstairs for every whisper and sound, I'm always trying to find that balance between not sweating the small stuff and requiring obedience.

Then I said, "Just because sometimes I choose to give grace doesn't mean I don't always know what's going on."

Then I promptly walked downstairs and chewed on that statement for a long while.

Sometimes we wonder why God doesn't punish others even though we think He should. Or sometimes we wonder why those mired in evil continue to flourish beyond our imagination.

Or on the flipside, we somehow think that God has missed some goodness or badness in our lives, resulting in this punishment or that blessing.

Just because He sometimes chooses to give grace doesn't mean He doesn't always know what's going on.

We may not always understand Him, but I'll save that for heaven. As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts. Isaiah 55:9.

I'm sure thankful for the grace.

Who am I? I am...

noreply@blogger.com (Melissa) — Tue, 25 Oct 2011 14:54:00 +0000

Who am I?

I've always had many answers for that question.

At different points in my life and in different conversations, I would have said:

I am ... a perfectionist.
I am ... a lawyer.
I am ... an organized person.
I am ... a runner.
I am ... a cleaner.
I am ... an optimist.
I am ... a traveler.
I am ... a reader.

But circumstances over the last several years have stripped away each and every one of those things. Some for a time and some permanently.

As we read, "Therefore, if anyone is in Christ, he is a new creation; the old has gone, the new has come!" 2 Cor. 5:17.

The old "I ams" are gone or so, so much further down the list. They have slowly been replaced by other qualities, more important and in a better order.

Instead, I am now:

A child of God, loved and forgiven.
A wife of a giving husband.
A mother of three generous blessings from God.
A daughter and sister and niece and cousin and aunt.
A friend.
An advocate.
A writer.

Amazing what a few years, a rare disease, and most of all God can do, isn't it?

When we stop and let go of who we think we are, it lets God step in and create who we are in Him.

And when I think of the phrase "I am", I'm humbled to use it at all in reference to me. I am reminded by this song who is the "I am." Enjoy one of my favorite songs.

I Am [Live] by Mark Schultz
Who are you?

Is THE I am coming before the "I am ..."?

Getting nothing done?

noreply@blogger.com (Melissa) — Thu, 29 Sep 2011 11:21:00 +0000

I often lie in bed at night and either think to myself or say aloud to my husband “I got absolutely nothing done today.” It is usually because something unexpected happened – a snow day, one of the kids is sick, several phone calls from case workers or insurance problems.

I have a list. I work from my list. I check things off my list. I even have a master list and a daily list. And an online list.
Many of us do and there’s nothing inherently wrong with that. Some of us have lists because we like to be organized or we have a touch of (admitted) OCD in us. We might like the feeling of control we get from putting something on a list or we like the feeling of accomplishment we get from checking things off the list. And for many of us, it is because our life has become so complicated that without writing something down, it won’t be remembered, much less completed. All of these characteristics are true of me, I admit it.

But the problem that creates is that somehow the list takes control. The list becomes our life instead of helping us in our life. We live to check things off that list and the days when we check ten things off the list become somehow much better days than those in which we’ve checked absolutely nothing off the list. Those days become the days where we say, “I got nothing done today.”

But is that true? My list may consist of doing the laundry, paying the bills, calling this insurance company or this case worker, filling out this paperwork, doctors, therapy, and infusion appointments. And I may actually have gotten none of that done today. But what was I able to accomplish for God? How was I used by God in His plan? Did I impact the life of my child for the kingdom? Were there teachable moments that will instruct their soul for a lifetime? Maybe reflecting on those things at the end of the day will offer a long list of “accomplishments” where I thought I had none.

However, on some days, me thinking that I’ve accomplished nothing is really true in the end. Those are the days where I was so focused on my list that He had to do everything without me even being a helpful vessel. I was an entirely unwilling participant in God’s plan that day. His list. But His list is so much better than mine. His list is simply a list of names. A list of people that need to be drawn to His kingdom.

I would love to wake up in the morning and just have a list like God’s. Who can I impact for the kingdom today? My husband. For sure. My children. Hopefully. Their teachers, the dry cleaning lady, the checkout bagger? How do know if I’ve completed those tasks? If I can “check them off the list”?

You shall love the Lord your God with all your heart, and with all your soul, and with all your mind, and with all your strength…. You shall love your neighbor as yourself. There is no other commandment greater than these.

Mark 12:30-31. I think that is a good measure.

God knows we need to accomplish things in our day and I don’t think He despises our lists. That is, so long as our lists are informed by and filtered through His list. Maybe racing through the checkout lane would give me more time to … do laundry. But, does that person need the love of God today that might take 1 minute longer to give? Maybe sending my son to his room for his behavior would be the easiest thing to do, but does he need a biblical explanation of why God wants us to be kind and helpful to his siblings?

I need to work at filling my list with His list and making His measure of success, my measure.

I'll take Blessed, with a side of MPS

noreply@blogger.com (Melissa) — Tue, 13 Sep 2011 23:21:00 +0000

I often say that I wouldn't wish MPS on anyone else. The heartache, the initial despair, the sorrow that somehow something you did brought this horror on your family, the gut wrenching sobbing that makes you throw up before you ever get a normal breath back.

No. Of course I wouldn't wish that on anyone.

But when balanced against the blessings and miracles and wonderful people that MPS brings, then again, maybe I would.

If I could reorder our world, would I create it any differently?

No, I would not. Because I now realize that it took all this for me to realize how truly blessed I am. How blessed I was. How blessed I will be.

Maybe for others it doesn't take MPS ... it might take something different. And I think when God allows us to come to that place, we really decide what we believe.

I wouldn't go back to the old life if you paid me. It is too refreshing to wake up every morning and just be thankful I took a breath, that my husband and children awoke, and that God loves even me.

------------
I am reminded of the words to one of my favorite songs - Blessings by Laura Story

Lyrics:
We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
And all the while, You hear each spoken need
Yet love us way too much to give us lesser things

CHORUS:
Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise?

We pray for wisdom, Your voice to hear
And we cry in anger when we cannot feel you near
We doubt your goodness, we doubt your love
As if each promise from Your Word is not enough
And all the while, You hear each desperate plea
And long that we’d have faith to believe

CHORUS

When friends betray us
When darkness seems to win, we know
That pain reminds this hearts,
That this is not, this is not our home…..

CHORUS

What if my greatest disappointments,
Or the aching of this life,
Is the revealing of a greater thirst this world can’t satisfy.
What if trials of this life,
The rain, the storms, the hardest nights
Are your mercies in disguise?

A Life, Distracted

noreply@blogger.com (Melissa) — Mon, 15 Aug 2011 12:01:00 +0000

We grow up. We go to college (or not). We meet a wonderful person. We get married. We have children. We work. We play. We sleep (or not so much).

We watch TV. We play video games. We Facebook and tweet. We talk incessantly about minutae, politics, the market, the weather. We clean (or not). We cook (maybe not well). And the cycle continues.

What is wrong with that picture? Aren't all those things necessary, or at least not terrible?

I'm not here to condemn the moving picture box in all of our houses. Or the social media that generates a new trend each month. I think both can be effective tools and can have a place in our lives.

But, I am constantly on a path of challenging myself as to what is necessary or advisable in God's eyes and what is just distraction.

I think that the greatest threat to our service to God, and Satan's greatest weapon of this age, is not a cult, addiction, or adultery. It is distraction. For by distraction, not only are non-Christians neutral or oppositional to God's goals, but many, many Christians are made wholly ineffective as well.

I should know. I lived a life distracted for many years. And I still battle it.

I followed the goals that this life sets before you. Education. Marriage. A Good Job. Children. None of which are bad in and of themselves. But the pursuit of them was the goal, not a by-product of my pursuit of God.

I don't think God intended us for a stoic life absent of fun and laughter, but I am trying to be more focused on whether I am just filling my time with one distraction after another, waiting for "enough time" to serve God more fully. Don't kid yourself, Satan will create one time filler or distraction after another. Today it is the best TV show, the best video game, the latest social media, and tomorrow it will be something new.

I am reminded of 1 Corinthians 9:24-27:

Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize. Everyone who competes in the games goes into strict training. They do it to get a crown that will not last, but we do it to get a crown that will last forever. Therefore I do not run like someone running aimlessly; I do not fight like a boxer beating the air. No, I strike a blow to my body and make it my slave so that after I have preached to others, I myself will not be disqualified for the prize.

When I am training for a race, usually a half-marathon, I train everyday for about 13 weeks. Training is not just the running; it is the healthy eating; not just the healthy eating, but the runner food eating; not just that, it is the stretching, the review of the course, the psychology of making yourself run for over 2 hours straight.

If the Christian life is like a race, are we not in training every day? Being in race training doesn't mean I am never distracted by eating a candy bar, but it does mean that candy bars are a very small part of a diet focused on a good race. By analogy, I feel like being in the Christian race doesn't mean we are never distracted by watching TV, seeing a movie, or reading a good fiction book, but it does mean that they are not the main part of our diet. We are not so distracted by them that we don't remember that we are in the middle of a marathon and there is a finish line ahead.

I think the distractions are Satan's way of making us forget that there is a finish line.

We are in a race. The distractions make us forget that we do not live on this earth forever. And we don't know when our finish line arrives. We only have a finite amount of time to trust the Lord and to make an impact. Every day gives us a chance to serve, be obedient, and make a difference for the Lord in the lives of others. And every day, we get closer to the finish line, whether we are running a good race or a poor one.

Maybe I should tape my race numbers to my Bible, mark my race number on my hand everyday, or pin a race number on my chest. Something so obvious that I won't forget the race I am running and the finish line ahead.

What are you distracted by? How much time do you lose each day watching the crowd or the pavement as the finish line grows closer?

Is there a downside?

noreply@blogger.com (Melissa) — Mon, 08 Aug 2011 09:05:00 +0000

Since Case was diagnosed, I felt compelled to find the bright side. That is not to say that I was happy and optimistic all the time - it is of course a process ... to process. But, if you live in a cloud of "what ifs" and gloomy prognoses, there is so little left of you to enjoy the child that is still with you.

I was reminded by wiser MPS mothers at the beginning of this journey that Case did not change. He was the same the day before he was diagnosed as he was the day after. His outlook, his love for his family, and funny antics did not disappear in one day. Wise, wise women.

But in some ways, MPS actually made him...
better. His full red lips, chubby cheeks, fat little hands, funny run, hugs that choke you, and innocent laughter all come from MPS.

His lack of understanding that the world contains cruel people who do cruel things makes him sweeter. His lack of understanding that I, his own mother, have done cruel things, humbles me incredibly.

It is that lack of understanding, that innocence, that I love in many ways.

If my understanding of the Bible is correct, it is that lack of accountability that will bring him before the Lord into heaven. I would love more concrete insight on this, so feel free to comment.

But when Case qualified for the clinical trial, I foresaw the possibilities. I once reasoned that Case was like Adam and Eve in the garden in some ways - pure in love for their maker and without knowledge of good and evil. But then I thought - might we then be responsible for bringing Case out of that innocent perspective and causing him to bite the apple, as it were? Will he someday understand good and evil and thereby risk the assured salvation I thought he had in his innocence?

These were heavy thoughts then, even in a theoretical possibility.

But heavier now in actuality.

Case has shown some knowledge of evil. He has begun to show shame at bad behavior. He has shown deceit by hiding to do something he was told not to do.

He is still a wonderful child, an incredibly innocent child in perspective. But I see the progression, and some days, I can't say that there isn't some sadness in me at this "loss."

I have had to give it up to the Lord. It is not my actions that will bring him to a knowledge of his maker, of good and evil. Only God can make this medicine work or not. I am incredibly thankful that it may save his physical and mental life from the decline that was his prognosis, but whether or not it does, I am reminded that my focus is, as it is with my other boys, on his eternal salvation of his spirit.

Praying for a ram

noreply@blogger.com (Melissa) — Thu, 07 Jul 2011 12:34:00 +0000

On April 6, 2009, I realized Case almost surely had Hunter Syndrome. No doctor had confirmed it, but we knew.

There is just so little that can hold you together at a time like that. Sometimes, I felt like I was falling apart. I felt like everyone who passed me in the street, the grocery store, wherever, could see right through the walking facade and see my heart melting away. But still, God held me together. He held me together with assurance of His past faithfulness and His promises. I quickly felt the need to be physically surrounded by those words, those promises.

I went to Bible Gateway and printed portions of scripture to comfort me, encourage me, remind me of God's ultimate plan, and show me that God is still in the miracle business.

Then I taped them all over my house. On my bathroom mirror. My dresser. My kitchen window. Wherever I went the most.

They are still there and the messiness of printer paper scotch taped everywhere just fits right in with the rest of the house. :-) I looked at the print date and it is April 8, 2009. I don't know if I can ever take them down because not only the verses themselves, but the date itself is such a reminder that the Lord provided from the very beginning of this process.

One of my favorites is at the side of my bathroom mirror, so I get a chance to read it every morning and every night while I brush my teeth and my Sonicare toothbrush buzzes for the requisite 2 minutes.

It is the story of Abraham, taking his son Isaac to the mountain to sacrifice him on an alter. And my favorite verses are:

"Abraham looked up and there in a thicket he saw a ram caught by its horns. He went over and took the ram and sacrificed it as a burnt offering instead of his son. So Abraham called that place The LORD Will Provide. And to this day it is said, "On the mountain of the LORD it will be provided.""

It always stirred two thoughts in me. One, am I willing to sacrifice my child, not on an alter, but in importance, to the glory of the Lord? Two, will the Lord have mercy on me and provide a ram?

While I did my very best to glorify Him in this suffering, I guess I am not afraid to admit that I still prayed for the ram. I remember asking time and time again for God to please provide his ram for Case's life. Maybe it is still my spiritual immaturity, but part of me thinks it is just that overwhelming love for a child that the Lord has instilled in us to remind us, in a small way, of His overwhelming love for us. I don't know if Abraham prayed for a ram to come, but I know he loved his son but still remained obedient.

It is such an illustration of our life, I think. Here I am, asking for a ram to save Case's physical life when really, what we all need is a ram to save our eternal life. Pastor Jerry recently blogged about this same passage and it resonates with me still.

I am utterly a sinner. I'll be the first to stand and admit it. God provided the ram for me and I didn't have to even ask. I just accepted it with an overwhelming "thank you Lord". Thank you Lord again for the rams you've sent.

and the Birth of Another...

noreply@blogger.com (Melissa) — Tue, 14 Jun 2011 12:47:00 +0000

Sometimes it takes death to be reborn. Sadly, it took the death-expecting disease of Hunter Syndrome for my walk with Christ to be reborn.

Let me back up.
I became a Christian at a young age. Frankly, I don't even remember all the details, but I've let go of the necessity for that. What matters is that at some point in my understanding, I accepted Christ as my Savior.

But like many Christians, I ebbed and flowed in my commitment. I never questioned my beliefs or my faith, a gift for which I am incredibly thankful and undeserving, but I was incredibly lukewarm at times.

“I know your works, that you are neither cold nor hot. I could wish you were cold or hot. So then, because you are lukewarm, and neither cold nor hot, I will vomit you out of My mouth. (Revelation 3:15-16, New King James Version)

That was certainly not a verse I was reading on a regular basis.

So when Case was diagnosed, thankfully again, my faith that God existed, that He loved me, that I was going to Heaven, that He had a plan - none of that ever wavered. But what I started to realize was - what does that look like in real life?

If I believed in God's Word, in what I said I believed, then why was I so sad? Why was I anxious about what would happen to Case, to our family? Why was I worried about the financial burden, the emotional toll, the life of this child?

Here were the promises that God had made me about all of those things:

Let not your heart be troubled; you believe in God, believe also in Me. In My Father’s house are many mansions; if it were not so, I would have told you. I go to prepare a place for you. And if I go and prepare a place for you, I will come again and receive you to Myself; that where I am, there you may be also. (John 14:1-3, New King James Version)

“Therefore I say to you, do not worry about your life, what you will eat or what you will drink; nor about your body, what you will put on. Is not life more than food and the body more than clothing? Look at the birds of the air, for they neither sow nor reap nor gather into barns; yet your heavenly Father feeds them. Are you not of more value than they? Which of you by worrying can add one cubit to his stature? “So why do you worry about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin; and yet I say to you that even Solomon in all his glory was not arrayed like one of these. Now if God so clothes the grass of the field, which today is, and tomorrow is thrown into the oven, will He not much more clothe you, O you of little faith? (Matthew 6:25-30, New King James Version)

Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus. (Philippians 4:6-7, New King James Version)

Then little children were brought to Him that He might put His hands on them and pray, but the disciples rebuked them. But Jesus said, “Let the little children come to Me, and do not forbid them; for of such is the kingdom of heaven.” (Matthew 19:13-14, New King James Version)

“And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away.” (Revelation 21:4, New King James Version)

So... if I believed that heaven was real, that I was saved, that Case, not understanding his Maker, would go to heaven as well, that God would provide for our needs, why was I so distraught?

Was I mourning the loss of my dreams for him? Yes. But God could fashion a reality that was beyond any dreams that I would have thought.
Was I mourning the impact this would have on my two other children? Yes. But they could become better people because of this.
Was I concerned over the pain, both physical and emotional, that Case would feel as the disease progressed? Yes. But God had shown himself sufficient to sustain me, an adult, through times of terrible physical and emotional pain; how much more could He sustain a child-like innocence?
Was I concerned over the financial burden that this would create? Yes. But God would show his provision to us in both daily miracles and the generosity of those around us.
Was I incredibly sad for myself, that I would have to endure watching him fade from me? Yes. And I realized that that was my biggest sadness. That I would lose this funny and happy and laughing and singing child.

I poured all of this out over and over. When I cried, I pleaded with God for peace. And God took all of these things and formed a better life for our family. Not only that, He gave me more than I had ever hoped for.

By early 2010, we had amassed a large amount of medical bills, both from Case as well as from Tyson's seizures. God used that situation to allow the kids to qualify for TennCare (Tennessee's Medicaid) through a process that specifically takes into account those with high medical bills.

Having TennCare provided for us in many ways. First, it covered equipment that Case needed (specifically his main stroller and its accessories) that would have been over the coverage amount of our regular insurance by several thousand dollars. Second, it covered his diapers and wouldn't you know it, God had timed it up perfectly. Case was just outgrowing the largest "regular" diapers they make (Huggies size 7) and would need "medical" diapers that cost a lot more. So now, TennCare would cover those as well. Finally, it covered personal care services for Case. This is a CNA to help him perform activities of daily living (like eating, dressing, toileting, grooming, transferring) that he otherwise would have been able to do at that age, but because of his condition, could not do normally. By the time this service was approved, it was incredibly needed because I generally could not leave Case, even in a gated room, for fear that he could hurt himself or someone else. He was climbing furniture a lot, hitting his brothers (with heavy toys, not just the regular brotherly pats), and taking care of what he needed did not really allow any attention for our other boys or even making dinner.

Now, that is not to say that obtaining coverage for those items was easy. There were several appeals that we had to file and hearings to attend, legal research to be done, lots of paperwork, applications, and legal wrangling, etc. But, that is where God just provided again. He had considered all this well in advance. Wouldn't you know it, I was a lawyer and just had no issue with writing those kind of letters, filling out that paperwork, making those arguments over the phone, and making legal arguments at an administrative hearing.

We also were shown the incredible love of God through friends who helped us with meals, watching the boys, organizing and attending fundraisers. Trying to be such self sufficient people all our lives never allowed room for God to step in and show us just how amazing He was and how He could work in His people. I still just sit and marvel at how whenever a need became urgent, it was met, and not just barely met, but usually met in an overflowing way.

And probably one of the best examples of God's provision ... the timing of the clinical trial. We had heard of the impending potential clinical trial not long after Case was diagnosed. But, we had also heard that it had been on the horizon over and over and never come to fruition. Well, we knew Case could not participate until he was 3 years old so we went to have him tested around that time and wouldn't you know it, he was "too smart" at the time. The researchers had to be certain that only boys with the brain impact of the disease were involved since it was trying to halt that decline. But at that same time was when we became certain that his brain was impacted, just not enough yet. So we knew that we most likely would have to sit and watch him lose skills until he might qualify. Well, after 8 months and hard work by his school and therapy team, Case still seemed to be doing well, but his behaviors (ADHD, unsafe, etc.) had become more pronounced. But within a month's time, he had fully qualified for the trial and dates were set for the surgery.

We didn't even have to endure one of the more obvious signs that his cognition was declining - severe stuttering - until after he initially qualified and only had one step left, that ended up (through a family foregoing the slot - can you believe the mountains God moved for Case to be involved?) happening within only 2 weeks. My expressed hope when the process started was that Case would start the clinical trial before Christmas of 2010 and wouldn't you know it, his port surgery was the week before Christmas and his first dose was January 3.

God paved the way, all the way.

I don't know why we've been so blessed. All I know is that I'm obligated to be faithful. He has certainly been more than faithful to me.

Death of a Dream...

noreply@blogger.com (Melissa) — Fri, 08 Apr 2011 19:26:00 +0000

When we first met with the geneticist at Vanderbilt, he did admit that he thought Case had a form of MPS, but he wasn’t sure what type. They had to get blood and urine samples to send off for genetic testing. Genetic testing that can take months. I assured him that I knew exactly what Case had. He had Hunter Syndrome. I was sure enough that that is what we told those around us. God had made it clear to us from the beginning what we were facing.

That is not to say that we took it calmly. That we reacted with extraordinary acceptance and peace.

I remember raging against the disease. I remember lying flat on the floor, crying out to the Lord to take this from us. To heal my son. To forgive me for whatever I had done that had made a little child suffer. To give me the disease. To give my child a long and fulfilling life. To allow him to connect with us, to talk to us, to tell us his wants and needs.

I allowed myself to cry when I needed to, which was almost every day for a long time. I filtered everything in life through the lens of my dying child.

But we are all dying indeed.

The confirmation from the genetic testing came at an appointment in June of 2009. In fact, it was on my birthday. We went to Vanderbilt to meet with the doctor and get the results, the results that we already knew. I thought, what a way to spend my birthday?

But, in fact, it was a great way to remember my birthday. Many years before, on my birthday, I was losing a child to a miscarriage. How far had we come? God had taken my sorrow and turned it into joy, and three times even! He had given us three incredible gifts. Who was I to question how He formed one of them differently and more special?

But still there was no instant acceptance on my part. I remember being in a Bible study the summer after his diagnosis. It was still fresh, only a few months of processing had occurred. I filtered everything that was said through the fact that my son had this terrible disease. I remember one specific lesson on letting go. It was talking about the transition from parenthood to letting your child make mistakes in preparation that one day they would move out and live on their own and have to make these decisions.

I just sat in my seat and tears just flowed down my cheeks. I didn’t move so I wouldn’t call any attention to myself. I just could not stop thinking that I wouldn’t even get the chance to let go of my child. He would likely not live that long. Would not physically or cognitively be able to make a transition out of me being his parent.

It was such a cycling period – we were already grieving the child that still lived with us. We were not grieving him as if he were gone, but we were grieving the loss of dreams we had had for him, dreams you don’t even realize that you have for your children or that are so taken for granted that when something slams the brakes on those dreams, you are shocked. You think your child will tell you he loves you. You think your child will hear your voice. You think you will watch him learn things, not lose the things he has already learned. You think you’ll watch him play baseball, learn to ride a bike, have friends, ride the bus, brush his teeth, get himself dressed, tell you a story, tell you what he did at school, what he wants for breakfast, that he’s tired, and maybe someday, go to college, get married, and start the family process himself.

Okay, so maybe men don’t think that far down the road, but us moms sure do.

But it is those fundamental expectations of being a parent that are suddenly ripped from you. Actually, not so suddenly. It is like each day, each hour, you realize a new thing, a new skill, or word, that you will miss or lose because of this terrible disease. You will miss him riding a bike. You will watch him lose the ability to speak. You will miss him graduating from high school. You will watch him slowly lose the ability to walk, talk, and eat.

You think of your life in terms of "before" and "after". Did that song come out before or after this terrible news? Was that picture taken before or after that terrible day? Can we look back now and see things we should have noticed all along?

Although you try not to, you also do pre-grieve the loss of your child. When you're told that the average lifespan is 10-15 years old, it is difficult not to. You even consider that you're 2 years into that time period and how much of his life do you have left? You hear of other MPS friends' children passing and feel the inevitability that it will someday be you who is comforted.

But along with the grief, you start to touch a toe in the water of this new world. I made friends with other MPS families online. They shared their insight and vast knowledge of the condition, they lent their shoulders without expecting anything in return.

But, you still don't realize that this is permanent. You try to keep your lives separate - this MPS life, and your otherwise REAL life, your REAL friends. Until the day comes when they crossover. I still remember the day when I was friend-ed on facebook by another MPS mom. It signaled the melding of what I had thought were two lives. It was the first sense that this was a permanent part of my life. These people were my REAL friends too and would be for my lifetime.

The first year after Case's diagnosis was spent furiously at various doctors' appointments, tests, and procedures, raising awareness, raising money for Case's medical bills and expenses, and otherwise trying to process this new life. God was incredibly gracious to keep us busy enough that we couldn't fall apart but still needing to constantly seek Him for strength and help.

At some point over a year after Case's diagnosis, I could start to say that life was no longer before or after. Life became good again.

From Birth to Diagnosis: Video

noreply@blogger.com (Melissa) — Sat, 26 Mar 2011 04:46:00 +0000

Last year I had made a video for the school and Case's website which explained the symptoms, tests, and procedures he'd had in his first several years of life. However, this time I wanted to chronicle my memories of Case's first two years as I was experiencing them at the time - joyous, fun, crazy, stressful, but full of life. Life without the weight that MPS eventually brought. Here is my effort with several caveats:

1) It's pretty long, more for me than anyone. I cut a lot, but didn't have the heart to cut more in the end. Obviously, I'm not a brutal editor. No blame on you if you can't make it to the end, but he really does just get cuter. Really.
2) I apologize for the grainy live video interspersed among the photos. Yes, I was still in the era of a digital camera that happened to take video when you were desperate.

Case: Birth to Diagnosis from SavingCase on Vimeo.

My (un)Planned Son - Part 2

noreply@blogger.com (Melissa) — Fri, 25 Feb 2011 18:00:00 +0000

When we brought Case home, we were incredibly thankful that he seemed healthy and completely recovered from the breathing problem he had at birth. Of course, I consistently asked his pediatrician and other doctors later whether PPHN would cause any lasting complications or whether he was expected to be healthy. All healthy, they assured me. No lasting problems.

But there were always these little things.
He would scream bloody murder in the car seat. Nonstop. Someone would have to continuously and strongly rock/shake the seat to get him to stop (and when I was driving and doing that at the same time … well, let’s just say it wasn’t very safe. But, driving with a child screaming like a banshee in your ear isn’t safe either). It was like that for the first couple of months. Needless to say, I tried not to go ANYWHERE without another adult to shake the seat. I was even known to utilize the 3 year old son, unbuckled, to shake the seat so we could get somewhere.

Case had a lot of trouble eating. He would eat and then stop to breathe. He couldn’t seem to do them at the same time. He would also projectile vomit like you wouldn’t imagine. Exorcist the movie in our own house. And he would choke a lot when he could get the food down.

And he would stop breathing. Yes, stop breathing. It was like something would close in his throat and we would actually shake him a bit and yell “Breathe! Breathe!” And, he would. But it would happen day after day. It was significant enough that we actually only went to the YMCA where friends of ours worked in the nursery and knew how to handle him. It would have freaked out anyone else.

And when he wasn’t stopping breathing, his breathing was just incredibly loud. One MPS parent has described it as Darth Vader breathing. Imagine the in and out breathing through the mask. Yeah, that about describes it. We always said that if you couldn’t hear Case breathing on the baby monitor, then that was when you had a problem. I would run up to check if he was still breathing. Didn’t happen very often, because we were living with Darth Vader, you see.

So, the pediatrician sent him for a swallow study when he was 3 months old. Normal.

So things went along as planned. The little things just accumulated.

As he grew, we noticed that his chest was sunken in. Pectus excavatum, it’s called. So I researched that, and found that he could possibly have to have surgery later in life if it posed a problem, but otherwise, not an uncommon problem.

At his nine month well visit, the pediatrician noticed that his head was very large. I remember her asking, “Does anyone in your family have a large head?” I asked if she had seen my oldest son (whom she had cared for since his birth) and my husband…. Yes, they both have beautiful, round, and robust skulls.

But, she was still careful and sent Case for a head ultrasound. Normal.

We noticed around that time that Case always seemed to have an ear infection. We’d go for a well visit. Ear infection. Antibiotics. We’d go for a sick visit. Ear infection. Antibiotics. Antibiotics. Antibiotics. Rinse and repeat.

So at some point, the pediatrician sent Case to an ENT to check out both his ears, his choking issues, and his breathing issues as well. He diagnosed Case with larygomalacia, which is a floppy larynx - a larynx that would close and this cut off his breathing. But an issue which usually resolves by the time the child is two years old. That is, if the child didn’t happen to have MPS that caused it.

As far as the ear infections, that ENT sent us to another ENT. That ENT sent us to Audiology. And also to a sleep study. Then back to the second ENT.

That process took about 7 months. Case finally had surgery to place tubes in his ears and remove his enlarged adenoids almost 12 months after the process started.

By this time, several other “little” things also existed. Case constantly had a runny nose. If you look at his pictures from 1-2 years old, he most likely is holding a tissue in his hand. We taught him to wipe his nose early. And of course, we had to explain to the daycare, church, YMCA, and whomever else that he wasn’t sick, didn’t have a cold, but his nose was just always running.

He also started to have this “look.” We just called it the Case look. His tongue would hang at the front of his mouth, he’d be drooling (with a wet shirt or bib always on), and he’d have this blank look on his face. We called it his look and we’d even laugh and do the look. It was just part of his cuteness.

Another part was the big belly that he had. Big, round belly. We’d get him to lift his shirt and show us his belly! It was adorable. What is difficult to realize in retrospect is that the big belly was an enlarged liver and spleen that just kept growing. Not so funny when you know that.

He also started falling more and having trouble with the stairs. It wasn’t so sudden or serious that you realized it was a problem until you look at it in the rear-view mirror. He needed someone with him to make sure he didn’t fall all the time. His balance was off. He just required more help than other kids. But, you always hear and remind yourself, kids develop at different rates.

Oh, and the diarrhea. That really got going at around 17 months. Now, Case never really had normal stools; they were never formed like other kids have and they were often very odd colors. Gross, I know. But if you only knew how much poop was discussed by MPS parents, your jaw would drop. Explosive diarrhea - it is often termed by us parents. Indeed. Case would be standing in a room then all of a sudden whoosh!! You get the idea.

Case’s development also slowed down between 18-24 months. He had less than 10 words and they weren’t fully formed. “Ma,” “Da,” all (for “ball”), or (for “door”), a few more. But the list didn’t really get any longer and he couldn’t put two words together like “mama go” or “me play” like a typical child could. But again, it wasn’t such a sudden problem or so significant that a lightbulb went off to signal a problem.

Looking back, it is easy to see the accumulation of symptoms of MPS. But time is slow and the mind is forgiving. And you love your child. And you believe the notion that all children develop at different rates. And, our life was busy. Three boys within three years of each other (and not planned that way, at least by me, but it was by God) and we were still getting used to this life.

But don’t mistake the fact that everything mentioned here is a symptom of MPS. As minor as they seem, they were all caused by the accumulation of glycosaminoglycans (or GAGs) in all of the cells of Case’s body.

There was actually a point where I googled Case’s major symptoms (or at least, several of the big medical terms that applied to him – persistent pulmonary hypertension of a newborn, pectus excavatum, laryngolmalacia, and choking – to see if there was something out there that we were missing. I think my mom, a registered nurse, had wondered at one time whether there was a syndrome or something that might be causing all these little things. But nothing came up.

Well, God decided to do a little more pushing and give us a miracle (with many more to come, but that is a later post). He sat my mom down one night to watch Discovery Health channel and on came Mystery Diagnosis. It had a story about a little boy who seemed to have a lot of the same problems that Case had. Little things, but which added up to a big thing. In the end, he was diagnosed with something called Hunter Syndrome. Can you believe it?

My mom got to the end of the show and cried, realizing that Case may very well have this terrible disease with no cure. A disease which would take his life most likely before he was into this teens.

Not wanting to believe it, she watched and waited. She listened and experienced firsthand the aforementioned explosive diarrhea. It was that and the developmental delay that sealed the deal for her to tell me about MPS. It was after a great vacation with her and the kids in Gatlinburg, Tennessee, and on that last day, we were talking about what might be causing Case’s bowel issues – food allergies or some other possibilities, when she mentioned that I should look at something called Hunter Syndrome.

I wrote it down and forgot about it for several days while I visited friends. When I returned home, I pulled the slip of paper out of my pocket and did what I always do for information, I googled it. One website led to another to another.

I knew it within a hour that my son had a terrible, terrible disease. I knew on April 6, 2009.

It is something that you just know. When the list of symptoms becomes twelve, thirteen, fourteen … seventeen, you know that it is not coincidence.

And the pictures. The pictures.

These boys have a look. It is chubby cheeks, red and full lips, broad forehead and bridge of the nose, thick, curled and stubby fingers, big belly, no neck, I could go on. Frankly, I think the look is adorable. It describes many of the things that I think are so cute about Case and hope he never loses.

But it is the look that sealed it. I raged. I cried. I banged the floor. I screamed..

Then I calmed and called a friend. A dear friend in the Lord and asked her advice. Do I call my husband at work and tell him that I think our child has a terrible disease? She was wise and questioned whether I really thought he did. I did. And I should call my husband.

Those next few days were a blur. We also noticed another hallmark of MPS – Case could not extend his joints. His arms and knees wouldn’t straighten and he couldn’t lift his arms above his head.

We went to the pediatrician for Case’s 2 year well visit. Should be a great time. At the end of all the necessary things, I told her I thought he had Hunter Syndrome. I handed her the list of 17 symptoms. She read the list, checked his joints, and immediately referred us to genetics at Vanderbilt.

God was working even in the little things. Vanderbilt scheduled us for an appointment a month later. I posted in an online forum of MPS families about having to wait and another family connected through their doctor to a Vanderbilt doctor who had someone call and get us in the next week.

Thus started the roller coaster of the last two years. It is a great ride. It has changed my life. And it has changed it entirely for the better. Entirely for the glory of God.

If you’ve made it this far, thank you. I am chronicling mostly for me, but appreciate any comments or thoughts you have.