Funambulism for Beginners

Compassionate Care

2013-05-07T13:28:00.001-04:00

If you don't follow DQ's carepage and you don't know me in real life, you don't know that we were forced to decide a couple of weeks ago if we wanted to pursue heart-lung transplant for DQ or choose compassionate care. After weighing everything, we chose to stop fighting DQ's heart defects and choose life, allowing her to be a kid, doing kid things for as long as possible. It is the only choice that made sense for our family and the goals we set for DQ's life all along. DQ was officially admitted to hospice yesterday.

Now that we are no longer searching for answers and hoping for "fixes", life has been utterly calm; almost eerily calm. I think a lot of that has to do with the drop in endorphins from always pushing for the answer. We've been in emergency mode for over five years and suddenly, we're supposed to just live. It is very weird to get used to and we don't really know how to live like this. We go through the motions, spend a lot more time snuggling and having fun, but there is a giant sadness that envelops us and rears its ugly head without notice, rendering each of us catatonic, weeping, or raging, depending on the day and the direction of wind. We are working through it all together though. And, thankfully, we haven't all broken down at the exact same time, so there is always someone stronger to help us through.

TRex has been mostly silent, but he is always thinking about his sister. He is concentrating on the practical aspects. For instance, this morning, we discussed how little DQ is and she asked if she would be taller than me when she grew up. TRex responded "you won't live 10 years DQ, so you'll never be taller than mommy." How am I supposed to respond to that? She probably won't live 10 years, but I don't want her to give up as if it is inevitable.

Two weeks ago, as we sat at dinner eating homemade, gluten free corn dogs, TRex declared that when he was an adult he was going to the zoo and eating real corn dogs because DQ wouldn't be with him.

And around that same time, he let us know he was discussing DQ's prognosis with his classmate. I can just imagine the surprise on the other first grader's mom's face if he brought it up to her! It is too bad I know only one other mom at the new school, so I couldn't warn her in advance.

DQ on the other hand, is terribly worried about being alone after she dies. She is afraid we will forget her and will no longer love her. (Of course, we let her know our love will never end, even at death.)

The Mad Scientist remains the solid, unwavering man most of the time, but does allow himself moments where reality sets in.

Me . . . I don't know. I've been angry at times. I've been very tired, but I don't think that is depression, but more closely related to inadvertently ingested gluten. Mostly, I'm not sure what to do with myself. How do I just sit back and let heart disease steal my baby? I'm not sure how to not fight.

Sleepless

2013-03-06T21:04:00.000-05:00

I've never been a good sleeper. In fact, I am the biggest loser of sleep. It would take me hours to fall asleep even as a child. I had no idea that people actually fell asleep within minutes of laying down. I simply assumed it took hours for everyone until I moved in with the Mad Scientist. He even used to try to teach me how to go to sleep. It never worked. I could never turn my brain off. Laying down was usually the first point in the day that I had just to my thoughts, so I would think. I couldn't stop myself and it would keep me awake.

Lately though, I'm not sleeping, but this type of not sleeping is different. I stay up late, despite being desperately tired. I just can't get myself to go to bed. I tell myself I'm too tired to climb the stairs. But that's not it really. I sit and watch brainless television or play ridiculous games until my eye lids are so heavy they can't possible stay open. And then, I climb the stairs and fall into bed.

Last night was even more ridiculous than normal. I had only about three hours of sleep the night before because DQ had been up off and on coughing (she has bronchitis). All I wanted to do for the entire day yesterday was take a nap, but I couldn't. There was too much to do. The Mad Scientist and I ate dinner around 8:30 as our norm. At 10:00 p.m., he went to bed. Despite having almost fallen asleep on the couch watching tv, I stayed up. It hit 11:00 p.m. and I still couldn't force myself to go to bed. Finally, at midnight, I got up and went to bed, thinking the only way my eye lids could stay open was if I used toothpicks. I could barely get myself up the stairs. After kissing TRex and DQ, I laid down and fell asleep immediately.

I was so angry with myself this morning--blaming my exhaustion on staying up playing Candy Crush Saga and Ruzzle. When I dropped TRex off at school, all I could think about was "how will I make it through the day?" When we walked into the building, one of the dads asked where DQ was that morning. I explained that she was home sick with her daddy. The dad responded "I hope she gets better soon." and went on his way.

As we made our way to the cafeteria where TRex attends the before school program, he asked me when DQ would get better. I replied "her bronchitis should clear up in a week or two." He insisted that I go further, asking me "But mommy, when will she get all better?" Of course, I had to tell him she wouldn't. He was sad and clung to me tight as I said good-bye. He didn't want me to go.

The woman in charge of the before school program asked if TRex was alright. I told her no, but he would be. I had to explain further since I wanted him to feel safe when I had left the building. In my tired state, I told her that TRex wanted to know when his sister was going to get better, but she's dieing and there is nothing we can do. I sobbed in the middle of the elementary school cafeteria, all the while trying to hide it from TRex.

As I drove away, instead of listening to the news, I was left alone with my thoughts. "How could I say DQ was dieing? What made me cry in the middle of the cafeteria? Why can't I keep my faculties in check?" I screamed at myself: "THIS ISN'T ME!!"

I then started to bargain with myself. "If only you weren't so tired, you would have held it together. If you hadn't stayed up late watching stupid tv, you would NOT HAVE CRIED IN THE CAFETERIA!"

In yelling at myself though, I realized none of it is mindless games and late night tv. I don't want to think about my baby possibly dieing. I didn't want to do it in the cafeteria and I don't want to do it at night. I don't want to think about it! But late at night, unless I'm too exhausted to think, I do think about it. I can't help but think about my sweet, sleeping children, happily dreaming in their beds and how reality is hurting them. When I don't pass out from exhaustion, I can't help but think about DQ's upcoming Pinkalicous birthday party and how this might be her last birthday. My mind won't let me escape the worry over how to help TRex and DQ cope.

But, if I stay up way too late, doing nothing but occupying time--doing the trivial and meaningless--my brain will focus on something other than my thoughts and feelings. If I force myself to stay awake doing something, anything until I'm certain I will fall asleep immediately, I won't have to think about what I don't want to think about.

So, I'm exhausted due to lack of sleep. I have many nightmares when I do sleep. And, in the light of the day, I'm not emotionally prepared to deal with questions or things that come up because I won't let myself ever think about my feelings about DQ's prognosis.

But now I know and I can begin to work toward a healthier way to deal with it all.

Dragon Mom

2013-02-16T14:37:00.000-05:00

Dragon Mom.

DRAGON MOM.

Am I a Dragon Mom?

I heard the term "Dragon Mom" for the first time almost a year and a half ago when I read a poignant op-ed in the New York Times by Emily Rapp. A Dragon Mom is quite the opposite of a Tiger Mom; she is the mom to a child who will die young and she knows it. There is no stopping the inevitable, so parenting becomes more about sharing love, smiles, and now, rather than creating building blocks for long-term success.

When I read the op-ed, it stuck with me. I had of course heard of Amy Chua’s “Battle Hymn of the Tiger Mother” and read articles about it. But I knew that wasn't me. I knew then that I was more closely aligned with the Dragon Moms than I was to any Tiger Mom. I even wrote about how I was not a Tiger Mom in a January 2012 post right here on this blog.

But, I clearly remember writing that blog post and thinking "should I add in my thoughts on where I fit as a Dragon Mom?" The problem was that I felt an affinity to what the Dragon Mom was saying and feeling, but I still had plans for the Dancing Queen. I was still holding out hope that DQ would have a future. I felt conflicted at that time about not wanting to be in either world. In the end, I only wrote about not being a Tiger Mom. I took the easy way out by ignoring the giant elephant in the room.

I realize now that didn't write about Dragon Moms then because I was protecting myself. I didn't want to admit out loud that part of me associated very closely with being a Dragon Mom. I mean, how could I think my daughter won't make it to adulthood?!? How could I give up on my sweet baby? How could I not fight with every ounce to get her to adulthood? Wasn't I told all of the time how far medicine has come!?! Isn't my job to do everything in my power to keep her alive into adulthood!!! If I admitted that part of me felt like a Dragon Mom, wasn't I saying that I didn't believe my daughter could ever grow up?!?

And now we've been told that the Dancing Queen will not make it to adulthood. She won't grow up.

Does that mean I should become a full-on Dragon Mom? How do I know what to do? None of the doctors can tell me what to expect. Does she have a year? Two? Five? Nobody knows how quickly she will decline. All they know is she will decline and that she won't live to be an adult. The Dancing Queen still has to be around other people. She will still go to school. I can't let her do whatever she wants and become a brat. It is hard enough on her now thinking that no kids want to play with her because she can't keep up. And I can't very well let her eat whatever she wants for dinner either--that can cause her to decline more quickly and be in frequent pain.

How can I help her enjoy life as much as possible and live every moment to the fullest while still letting her be part of society? Where is the proper middle ground? How do I know what is best? Where's my self-help book--Raising Your Terminally Ill Pre-Schooler?

Fuck it all! I don't want to be a Dragon Mom!

Is this my life?

2013-02-07T20:06:00.000-05:00

I walked into the garage Tuesday morning and TRex and the Dancing Queen were fighting. DQ insisted the Mickey was going to die on Wednesday. His heart was sick and the doctors had nothing more they could do, so Mickey was going to die. DQ was devastated. TRex was fighting with her, telling her "NO! Mickey is not going to die. The doctors keep researching and they are going to find a cure. You're wrong DQ. You can't be sad. Mickey will not die tomorrow!"

This morning, I had the following conversation with DQ:

Mommy, I'm sad. People have been hurting my feelings and I feel sad.

"What have people done, Dancing Queen?"

They hurt my feelings, Mommy.

"How did they hurt your feelings?"

They said I'm going to die. And not die as adult like everybody else. They said I'm going to die as a kid.

"Who said that DQ?"

I don't know, Mommy, but it hurt my feelings. I'm very sad. I don't want to die.

How can I explain life and death to an almost 5 year old and a 6.5 year old? Why should I have to help my daughter understand when the doctors tell us that they are going to do nothing more to help her feel better; that they're not going to fix her heart; that they don't know what to do?

Monday night, that is exactly what we were told. DQ's heart will continue to go into worse heart failure and the doctors do not know how to make it better. They don't know how to save her. They know she won't grow to be an adult.

TRex was with me when I learned this news. He heard it all. We had to explain to the kids before we could comprehend everything. Why should I ever have to explain this?!?

I hate congenital heart defects!

You Don't Know

2013-01-27T13:39:00.001-05:00

It seems that I only come back to this blog these days when life is too hard, too messy, too much. I think that is okay. I created this outlet because too many people judged my feelings and my choices when I posted to the Dancing Queen's carepage. I wasn't allowed to worry. I wasn't allowed to question "what if". I wasn't allowed to worry about other children dieing. All because it made friends and family uncomfortable with the thought that the Dancing Queen could also die. I was told that I shouldn't put my energy into strangers I've met on the internet because it only made me sad and introspective. But, the thing is none of those same friends and family have any true idea of what I go through. And when I tried to open up, I was shot down and told "don't worry." Who are you to tell me not to worry? Are you responsible for trying to find an answer? Have the doctors told you they can't do anything? Have you sat in the room with a surgeon minutes before your daughter was going to have her third open heart surgery to be told they would NEVER be able to fix her main problem?

And now, years later, the Dancing Queen appears so well that when I say I'm concerned that the doctors won't be able to help her, I get the same thing--it's no big deal; she looks great! That's all fine and good, but I watched her today in swimming class. She isn't strong enough to lift herself off the side of the pool to slide into the water. She tired from walking the 15 feet of the pool, so much so I thought she might collapse in the middle. She can't keep up, no matter how hard she tries. So, yes, she looks good, but you don't know what you're looking at!

For the past several weeks, we have been in the process of getting more information as to why I've seen DQ decline over this last year. The cardiologists found a significant problem. They told us they could fix it. Then they said they can't. Now they are saying they might be able to, but won't tell us how and whether it will require another open heart surgery. Or we just might have to let it be, which will only make things worse. So much uncertainty, but she looks good. Heart disease is a silent killer! You can't see it lurking beneathe the surface, but you pretend all is fine. It's not you who has to look for minute differences. You're not responsible for keeping her alive!

You're not the one who has to pry her little body off of you when you drop her off at school in the morning because she doesn't want to stay where the other kids get to go outside and run and she can't. You don't have to remind her that the cold air makes it difficult for her to breathe and that is why she stays in. But, she looks so good.

And you've never had to explain to a 4 year old that it wasn't likely to get better. You didn't answer the questions: "Mommy, when I'm a mommy, will I still be sick?"; "When I'm a mommy, will I still not be able to play outside?" Did you have to explain to an almost 5 year old that her heart and lungs were the best they would ever be, so when she was a mommy, it would probably still hurt to be in the cold. Did you grasp for some silver-lining for her; promising that as a mommy, she'd be able to make her own decisions and could go outside if she wanted. And all the while, you begged yourself not to cry because the likelihood she will ever be a mommy is so very slim.

I know she looks good to you. And I know she is much healthier than she was at 2.5 years old, but she not quite 5 and is doing worse than at 3.5. Instead of getting stronger, she is weakening. Instead of being able to walk farther, she is traveling less. Don't let the smile fool you and don't discount my genuine worry. You have no idea because you won't look past the surface.

Mickey is Dying

2013-01-01T16:51:00.001-05:00

I was sitting at my computer, losing myself in a little Pinterest before dinner on New Year's Eve. The Dancing Queen walked in, Mickey Mouse in her arms. She had the saddest look on her face.

"Mommy, Mickey is very sick. He may die. He needs to go to the hospital."

I asked her, "Has he gone to your clinic for a checkup, yet?"

"No, mommy. He is too sick. He must go to the hospital. Will you make it?"

I got up and went directly to the basement to build the hospital. It had been waiting since Friday night when DQ got it as a gift from her aunt and uncle (the Editor and Car Guy) and I had to help save my grandmouse.

As I popped out cardboard holes, cut doors and windows, and folded tabs, DQ and TRex discussed the seriousness of Mickey's situation. He needed a cardiac MRI at midnight (it was New Year's Eve remember). Mickey was very concerned about the procedure, but DQ consoled him:

"Mickey, I know you are scared, but mommy is here. I'll have to leave you when you go back with the doctors, but you need this. You are going to die if you don't have your MRI. The doctors will take good care of you until mommy can get back."

I asked DQ why she thought Mickey would die if he didn't have the MRI. She said "Mommy, Mickey's just like me!"

"But, DQ, you're not having an MRI because someone thinks you are going to die. You're having that done so the doctors can get better pictures."

Very seriously, she turned to me and said "Mommy, when you have an MRI, they put you to sleep. Sometimes, when you go to sleep, you don't wake up."

We discussed how scared she was to have an MRI on Friday. I tried to help calm her nerves--tell her it is just like an echo cardiogram (which she thinks is fun), except she would be asleep. I told her that the Mad Scientist and I would be with her, we'd bring Mickey and Lamby, her pacifier, and her computer full of movies. She seemed to be okay, but then TRex said it was time for her to go to the waiting room as Mickey was going back to the MRI.

DQ held her baby close and told him that she loved him. She promised he wouldn't be alone--that the doctors and nurses would take good care of him while she was waiting for him and as soon as she could, she'd be with him again. She let him know it was okay to cry if he needed to and that she always loved him.

Luckily, the Mad Scientist saved me at that point by requesting that I help with dinner. Otherwise, I would have had other things to explain.

I don't know whether to be sad or happy. I mean, I know I am happy that DQ seemingly understood what I was telling her, but so very sad to know she has to understand at 4.5.

Thankfully, today, I've been informed that "Mickey's heart is good. . . . Every day his heart bothers him, but today Mickey's heart is good."

How Long Can You Run?

2012-12-08T09:43:00.001-05:00

I had a stress test last weekend. During the test, my target heart rate was 137. I couldn't get there because I'm so out of shape. After 7.5 minutes of fast walking and running, I only got to 136. After a minute at 136, I had to stop. I had nothing left.

The Dancing Queen easily gets to 137 at many times during the day. Her resting heart rate while awake hovers around 115. In a deep, restful sleep, she jumps between lows 80s and high 90s (and it can go higher if she compresses her good lung by laying on that side, which she rarely does). Her little body is constantly running.

How long can someone continuously run before their heart says "that's enough"?

PS
Stress test came back completely fine. My doctor was being overly protective of me because I get intense stomach aches when I don't eat now that I've removed gluten from my diet. Even though we were both certain my pains were not heart related, we couldn't risk it.

Not Happy

2012-11-13T21:01:00.001-05:00

There are deep, dark pillows encircling her eyes. She finds it hard to wake each morning. She is tiring more easily. Yet, she has finally "kicked" the cold that has held on for months now.

The Dancing Queen looks so sick to me. And yet, I'm supposed to be happy with how she is doing now.

I'm not happy though. I want her to be fixed! I want her to not worry about fatiguing from swinging 10 minutes by herself on the big girl swing. I want her to look like a little girl instead of a tired old woman in a teeny, tiny body.

This sucks! It just sucks to know my daughter is steadily declining, so slowly that nobody else notices. They make me feel as if I am wrong to notice the little things. She is not improving.

She saw her pulmonologist yesterday. He was happy to see her smile; to see her play; to know the joy that is my beautiful daughter. But did he do anything to help her stop desatting as she sleeps? Did he give us a plan to make her healthy?

Could he?!?

No!

Yes, we've changed a med and it may help her breathe easier, but nothing was changed. Not really. Unless she gets worse, nothing will change.

And I'm not happy about that.

Growing Up

2012-10-19T18:07:00.000-04:00

My baby is growing up. She is looking so old and so incredibly beautiful. I often marvel at how far she has come.

I mean, look at her. She is simply amazing.

I look at this picture, taken earlier this week, on DQ's first official picture day, and I think "how can this child only be 4.5 years old?" She just looks so much older (at least in this picture)?

So many things she does these days are grown up. Yet, she reminds me that she is still so very little all of the time as well. It is a hard age. She wants to be big. She is big. But she wants to be small. She asks me to cradle her in my arms and hold her like a baby. She is so, so tiny, I can easily rock her in my arms, just like I did when she was a baby.

How did we ever make it this far? How is it possible that I planned kindergarten for her just last week? Wasn't it last month that she was still demanding baby food at every meal? (I guess that was last year.)

I am so proud of my children and how far they have come. I've known that TRex is big for years now. He blows me away with his depth, his compassion, his understanding. Wise beyond his years and unfortunately, gaining more experiences no 6 year old should face. Yet, he takes it all in incredible stride.

Yet, DQ, I've not let myself see her get big. Yes, I agree with her that she is big when she makes the statement. But did I really believe it? She's not big. She weighs less than 30 pounds, but my goodness has she matured.

I can't wait to see what more she will do and who she will continue to become. Who thought this would be possible before she was born or that dreaded day in December 2009, when she was given two years at most to live?

Dare I say that I am really planning for DQ's future . . . finally?!? Dare I believe it possible?

I don't know. Maybe not.

I was drawn to this picture, stared at it for a good 10 minutes late last night, thinking "how did she get so old and why are her lips blue?" I searched other recent pictures to see if was just the lighting, but no, her lips have a constant blueish tint in all of them. Pictures taken at the same of TRex, show perfectly pink lips. When did that happen? Her oxygen has been okay, hasn't it? Why is she blue?

Why do I have to have reminders of the bad when I notice the wonderful?

Pinch Me

2012-10-03T20:19:00.001-04:00

I love fall. I love the cooler weather, the color of the leaves. I love wearing heavy clothes and snuggling under a blanket at night. I love apples and soup, cider and donuts. And I just love the feeling I get inside of me when it becomes fall. It may be a relic of my school days, but everything seems to start over in the fall. I love that.

And no matter how much I am reminded that fall is here . . . now, I'm not feeling it this year. I don't know. It just doesn't feel real. None of it does. Each day, I go through the motions, but don't feel connected to any of it. Maybe its being in a new house and doing a new job. Maybe its the unease of DQ's constant illness without answer. Maybe its the cough medicine I've been guzzling for the last week.

No matter what it is, I'm not connected to this fall and maybe not even connected to my life right now. Is that possible? I still do it all. I still hug my babies close and grab my camera so I don't forget the moments. I still work, drive home every night, pay the bills. But I'm not here.

Someone ought to pinch me. Maybe then I'll wake out of this fog.

A Brother's Love

2012-09-29T12:07:00.001-04:00

Thursday night, I got home after the kids were in bed. I quickly kissed TRex as he was almost asleep. Then I went into DQ's room. She was awake because she had gotten a splinter "from wood" that day and wanted it out. She asked me to do it even though she knew I'd have to use a needle.

So I grabbed a needle, tweezers, alcohol wipes, gauze, bandages, and the Mad Scientist. We asked her if she was sure and she said yes. So we tried to extricate the wood.

DQ screamed bloody murder. TRex woke up befuddled and ran into her room, worried, watching, and scared. We continued for all of two minutes before we realized how futile the exercise was and stopped, splinter still embedded in DQ's finger.

DQ fell fast asleep, but TRex was traumatized. We put him to bed, but he laid there crying, very upset at the thought that we would use a needle on his sister. I explained the necessity and then he understood. Unfortunately, he was still transfixed on his sister.

I tried to get TRex thinking about happy things. I told him that his cousins had signed up to walk with us at the Congenital Heart Walk that day and reminded him of the fun we will have. That made him happy, but didn't stop his worry.

I told him that he had received $225 of donations for the heart walk that day. He liked that too, but was still worried about his sister.

I offered to take the worries myself, but he wouldn't dare make mommy worry. So, we found a triceratops and gave all of his worries to the dinosaur. He was covered in armour, so could definitely take the pressure!

TRex felt better, so I went to leave the room. As I closed the door, I heard him crying again. I went back and he said he was still worried about his sister. I exclaimed "But I thought we gave those worries to the triceratops?"

But mommy, these are new worries.

I had TRex give those worries to the dinosaur, then I suggested he replace them with good thoughts; thoughts of playing with his cousins.

He wanted a better thought. He decided that he would dream of raising the most money ever for the heart walk. He became animated and shouted, "If we raise more than a million dollars we could do so much research! We could help DQ!!"

TRex went to bed happy, dreaming of all the money he can raise for congenital heart defect research. And first thing Friday morning, he came bounding out of his bedroom, piggy bank in hand "Mommy, I want to donate ALL of my money to the heart walk."

Maybe, just maybe, we have found a way to help TRex with his worries. Perhaps being proactive in helping find a "cure" for his sister will make TRex worry a little less.

If you'd like to help TRex reach his goal of raising the most money ever for CHD research, here is the link to his fundraising page: https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1028344&supId=367339350.

Someone Other Than Me

2012-09-27T21:12:00.001-04:00

For the last several weeks, TRex has been questioning life, death, doctors, and God. He continues to find ways to talk about people who have died from heart problems and then ask if it could happen to his sister. He wants to know why doctors won't save everyone, specifically why might they not save DQ someday (afterall, we've told him he need not worry about his sister because mommy and daddy are bringing her to the best doctors, who are doing everything they can do). He is questioning just how much doctors can do.

In the mix of that, he met a "best friend" this summer who told TRex all about God and how you will live forever if you just believe. TRex (and DQ after learning from her brother) have begged me to allow them to believe in God so that they can live forever. "Mommy, please, please let us believe in God. I don't want to die."

I've lost track of the number of times that I've explained that even people who believe in God die and that they can believe whatever they want, but mommy and daddy don't believe in any god. I've told them to ask whatever questions they have, but they don't think I can answer. So, I tell them to talk with their aunt, but they don't want to.

And so my poor little boy is piecing together life and death and religion all at the same time. The other night, after a discussion of hearts wearing out, TRex decided if he dies before me, he's going to let me know if there is a God. And then he said "And if there is no God, I don't know what I'm going to do." Of course, I explained to him that no matter if there is a God or not, he was going to live a good life, full of love, spent doing good work with the people that matter. He seemed to accept that, but he continues to worry.

Considering I've been having these conversations repeatedly over the last several weeks, I wanted to be sure TRex's worries weren't overtaking his schoolwork. So, Tuesday morning, I met with TRex's new principal and his new teacher. We were there to discuss TRex's anxiety and how it affects school and to develop a plan for him when his worries over his sister became a distraction.

Wonderfully, they told me that TRex is adjusting extremely well and fitting in with the other kids. He is showing none of the signs he has in the past of worrying over his sister at school. But, they were concerned that he is bringing those concerns home to me. He is obviously pushing the worries out of his head in school (a very good distraction), but he still needs to get them out when he feels safe. He feels safe with me. Me.

Then they hit me. They think TRex needs a counselor so he can give his concerns to someone other than me. OTHER THAN ME!

Alarm bells rang out. My mind was racing: How could they want me to pay someone to take my place? Shouldn't they be happy that my son is comfortable enough to tell me everything?!? Why would they want me to break that special bond between us???? He is my son!!!!

Luckily, I listened to what they said nonetheless. They love that TRex and I have an open dialogue and that he feels comfortable confiding, but experience tells them that TRex will stop coming to me at some point, probably when he needs it most. When I become too overwhelmed or concerned, TRex may hide his feelings to protect me and then he will be all alone. We need to get him comfortable with someone now so that should something happen down the line, TRex will be covered.

I should be grateful that TRex is in a school that cares enough to look out for him now and down the line (his principal offered to speak with him whenever he felt sad or confused or needed reassurance because of his sister). And I will be grateful someday. But, right now, I don't want to think about the days when my sweet, sweet boy doesn't want to confide in me. I know they are coming, but I'm not ready to let go.

Ack Attack

2012-09-17T20:37:00.000-04:00

Her name was Kayme (pronounced K Me). She was my imaginary friend between the ages of 4 and 6 (I think). She wasn't around long (that I remember) and eventually, she had an ack attack and never came back. At least, that is the story I've been told. At one point, I announced that Kayme had an ack attack and never came back.

I haven't thought of Kayme for years. But then, the Dancing Queen became enamored with the Pinkalicious books. And in "Goldilicious", we meet Pinkalicous's imaginary unicorn. Last night, after reading "Goldilicous" for the billionth time in a week, TRex asked what an imaginary friend was. I explained and he asked if kids had imaginary friends. So I told him about Kayme.

Fast forward to tonight, when read "Goldilicious" again because it was DQ's choice. After the story, TRex asked me why Kayme never came back after her ack attack. I responded that kids grow out of their imaginary friends and when Kayme had her ack attack, I must have outgrown her.

TRex then wanted to know if an ack attack really was a heart attack. I told him truthfully that I didn't remember, but when I was older and was told the stories of Kayme, I suspected it was a heart attack.

He left it at that and went off to bed.

After I tucked in DQ and went to kiss TRex, he asked me why I didn't try to save Kayme from her heart attack. He didn't understand how I could let her go. Why didn't I call my dad to save her? Didn't I want to play with her any more? I tried to explain that imaginary friends don't last forever and I had other real kids to play with.

Then, we got to the meat of the matter. TRex wanted to know why someone wouldn't be saved when they had a heart attack. I had to explain that sometimes there was nothing to be done. He wanted to know exactly how and why a person could have a heart attack.

Then he was silent for a while.

He looked up at me and asked "Mommy, did DQ have a heart attack?"

No, honey, she never had a heart attack.

The relief on his face was palpable. And luckily for me, he never asked the next question.

Something tells me that I won't be so lucky in the near future.

Playing Games in a Tent

2012-09-06T20:30:00.002-04:00

Mommy, I want to dream about playing games in a tent with you aaaand . . . eating Azteca.

aaaand . . . eating healthy foods at home.

aaaand. . . eating strawberry shortcake.

aaaand. . . going to a chocolate factory.

Such is the nightly routine of my sweet girl. She is always going to dream of playing games in a tent with us and eating whatever suits her fancy that day (unless we read or watched Willy Wonka).

But how often have we played games in a tent?

Recently, not much.

It is 8:30 at night, when I'm sitting at the lonely computer, that all I want to do is play games in a tent. But, I can't. My babies are sleeping (or at least they better be!)

We bought this new house, complete with an office for me to work in. I've taken advantage of it. I've been home at bedtime so much more over the last several months than I had in a very long time. But now I want more.

I want to be able to play games with the kids, not just tuck them in. I want to be in their classrooms, not just hear about their days. I totally understand why being a stay at home mom would rock.

Don't get me wrong. I still love my work. I'm enjoying my new practice area. And we can't afford for me not to work (especially with the new house and an old house that is still in need of a renter--YIKES!)

But, sometimes, I want to play games in a tent with my babies and eat yummy foods, not just dream about it.

Beneath the Surface

2012-08-16T21:25:00.002-04:00

It hides beneath the surface where nobody really sees.

She runs, she plays, she dances. She can't be sick.

But were you really paying attention? She stopped well before the other kids and started talking to you and making you forget she can't keep up. It's called a coping mechanism. She uses them all of the time--even when her physical and occupational therapists are testing her.

She is smart as a whip and will convince you to do something else if she can't keep up physically.

Heart disease is a silent killer.

Pulmonary hypertension is very well disguised.

All of it lethal.

If you don't pay close attention to every detail, you'd miss the decline.

Yes, she is sick. She hides it well. Don't hold it against her.

It's Not Her Fault

2012-08-01T21:16:00.000-04:00

I can handle it most of the time. I don't break down. Really. I stay calm.

But, I always hold my breath when I have to ask questions like "will it be a problem if my daughter needs to wear a diaper at nap time?" Upon hearing the answer "we're not licensed for that", I try so hard to hold back the tears and not let the person on the other end know they cut me to the core. When I explain that she needs diapers because she sleeps so hard due to the shear exhaustion of standing upright and being a kid with so many physical hurdles to overcome, they sympathize. But . . .

. . . we're not licensed for that.

Potty training has been an ongoing process with the Dancing Queen for years. She wants to be big. She wants to use the potty, but it is just so hard for her. I've talked a lot about DQ's eating problems. Well, those are nothing compared to her potty problems (and the potty problems most likely add to the eating issues).

DQ wears a diaper to bed at night. She hates it. She wakes up every morning and says "Mommy, I think my diaper is dry today. Can I wear underwear to bed tomorrow?" And everyday, I have to tell her "No, honey. The diaper is wet. You take lasix right before bed. It is really hard to hold it all night when you take diuretics." And she sleeps so hard, she never even realizes she pees. I try to let her know that it's okay; we all understand. But, she gets sad every morning nonetheless.

And while DQ wears underwear when awake full time these days, she still has accidents. There have been more weeks this summer that DQ hasn't been permitted to swim on swim day than there has been weeks she can simply because her body doesn't work in the way it should. DQ wasn't born with the muscles that all of the rest of us have. She had surgery as a 3 month old to help, but it's not the same. She faces pain ever single day. And recently, she started to face ridicule as well.

And because using the potty has caused so much torment in her little life, DQ revolts against it, making the process all the worse. She fights us constantly as we remind her to use the potty. "DQ, you took lasix an hour ago, you need to use the potty." And she screams "I DON'T HAVE TO! I JUST WENT!" But, if she doesn't go just in case, there will be an accident. It's not her fault. You try taking the highest dosage of lasix a day for your weight and see how quickly it creeps up on you. We have to remind DQ every 15 minutes to use the potty after lasix. But all she sees is that we remind her and not her brother and not the other kids at school. Why is she the one singled out?

And don't even get me started on the other medicines she has to take and the harsh reality that comes with them. My poor baby feels like she is doing something wrong because the medicines she desperately needs to help ease the pain, present huge obstacles to overcome for most people, let alone someone with the equipment the medicine was designed to work for. DQ wants to be big. She knows what she has to do, but her body betrays her.

Why can't people understand?!? Why don't they help her? Why do I get so angry at times? IT'S NOT HER FAULT!

And, yes, there are times, she does it on purpose. I don't blame her for that either (at least not at this moment). If you were constantly being punished for doing something you couldn't control, wouldn't you do it on purpose every once in a while so that at least there was a reason to be punished?

Really? REALLY?!?

2012-07-30T22:02:00.002-04:00

We closed the sale on our forever home on Thursday, July 19th, after 3 grueling hours in which they slaughtered my name in every way possible. We didn't get possession that day because the sellers needed more time (they had a lot, A LOT of junk in the house). We gave them until the 29th at 5:00pm.

But, at first, we were told we'd have the house on the 20th. Then we were told it would be later, but they weren't sure when. Then we were told the 29th. All the while, we couldn't make plans to move ourselves.

Finally, last Thursday, the 26th, we were told we'd have the house on Saturday, the 28th. We planned our lives around this. We told the kids when we were getting the keys.

Yet, on the morning on the 28th, the seller called (the seller we were told has been in Hong Kong all summer!). He told us he'd not be out of the house until the 29th, but gave us no time. So, we drove by to ask WHEN. We were told 5:00pm on Sunday. (And I noticed they hadn't cut the grass once in the 10 days after closing, despite the days and days of rain.)

At 11:00 am Sunday morning, the seller call me again and said 5:00 was not going to happen. That he needed another week. Another week! This upcoming weekend is the ONLY weekend we have left to move this summer. He couldn't have another week! If he did, the Mad Scientist and I would both have to take time off of work to move. We can't afford that!!! And besides, the escrow only lasted until Sunday night at 5:00pm!!!! I was furious and scared and sad and furious!!

I called my realtor. I was told my only option was to call a lawyer. Really????

I spent the next several hours researching my choices, calculating damages, and drafting eviction papers. I was prepared to go to the house at 5:00pm, the first set of eviction papers in hand to serve him. But, at 2:00pm, as TRex and I entered the grocery store, my realtor called, asking if I'd be willing to do a final deal, whereby the sellers got an additional 2 days. I said okay as long as I got $175 for each day past the escrow. (The utilities were already in our name!!!!)

So, we made deal between the parking lot and TRex's bathroom break after aisle 5.

Then, as I was literally paying for my groceries, the seller called me again, asking if we'd let him give us the keys at 9:00pm that night. He had called all of his friends and begged them to help him. I said yes!

During dinner, he called again, saying his friends had come he would be done by 9:30pm. He also asked if he could leave the pool table in the basement. (Score one for MS! He wanted that table.)

It seemed as if the house was finally going to be ours 10:00pm Sunday night.

Then, at 9:26pm, the seller called again. He had run out of space in his second storage unit and nothing was open any longer for him to rent. He wasn't going to be out Sunday night.

Luckily, MS was on the phone with him. I was screaming in the background. Yelling that he had better be out by 5:00pm Tuesday night with the money he owes us! But, I could tell from the Mad Scientist's end of the conversation that he had NO INTENTION of finishing. He didn't want to take a day off of work. BUT I WAS GOING TO HAVE TO TAKE TIME OFF OF WORK?!?

Finally, MS handed me the phone. I heard the seller say he needed to rent another storage unit; that he needed another truck. I didn't care. I told him he had until 5:00pm Tuesday to get out with $350 to cover my damages or I would start the eviction process and file a lawsuit for damages (I had calculated at least $3200 in damages if he still wasn't out by next Sunday.) I pulled the lawyer card (which I try never to do). He said he couldn't miss work. I told him I COULDN'T MISS WORK. I told him that I have a house that needs to be empties. That he was messing with my children because they keep thinking their getting a new house and then they don't. I went all crazy on him. But, I left the conversation with the impression that he really didn't care about us and had no intention to pay the money he owes and wasn't going to leave the house by 5:00pm Tuesday.

I sent a long email to my realtor, asking her to impose on the seller's agent how serious I was and that I would feel cheated by everyone involved if the agreement causes me to lose two days in which I could have started the eviction process.

This morning, my realtor took care of business. She and the seller's realtor worked it out to make sure the deal we made on Sunday would go through. I wasn't believing anyone any more, so I spent a lot of time doing legal research, talking to colleagues, and formulating a plan. This seller is a lawyer himself!

I was told not to speak with the seller; that the agents would handle it. I was grateful, ready to be done with it.

Then, about 7:45pm, as MS and I were plating our dinner, my phone rang. I didn't recognize the number, so I didn't pick up. Then MS's phone rang from the same number. It went to voicemail. Sure 'nough. It was the seller. He was going to be out by 9:00pm. Could we come pick up the keys? And we thought "Again! Really? REALLY!?!"

In total, he called us 5 times before we called him back and said MS would be there at 9:30pm to get the keys.

I started writing this post about 45 minutes ago, when MS left the "old" house to get the keys to our forever. I asked my brother-in-law, the Car Guy, to go with him so I could feel safer. And now that the Car Guy lives very close (as of last week), he could do it for me.

Since then, MS has called me. The seller is still packing up the last of the junk and MS is making sure to dot all of the I's and cross all of the T's for his lawyer wife. The sellers are leaving many things more than we planned: a trampoline, a backyard kid's play set, benches. We want to be sure we're not accused of stealing the items.

We still need to get our money for his holding over. We need him to sign the release of escrow funds.
But even after all of that done, after I know my sweet husband is safe and that I have the keys to forever, I don't know if I'll believe it's all true. So much has happened. We've lost this house and got it back again over and over and over. Will life ever feel normal again?

Barely Holding On

2012-07-19T07:05:00.001-04:00

I have been so crazy, so overwhelmed recently, that I think its safe to say I'm on the tightrope, but just barely. I'm only holding on by a couple of fingers while a tiny bird pecks at them, in the rain, with the wind blowing, and a giant gorilla is jumping down the line.

Lucky for me, that damn gorilla should wander away this afternoon after he realizes we held on and close on our forever home. The trick will be to stop the rain and get our current house rented out and fully move.

I'm learning to work with the wind. I'm taking over the practice area of a colleague moving on to bigger and better things. It is exciting and scary all at once and a career move I relish.

I'm never going to get back on the line though and feel safe until that little bird stops pecking at my fingers. DQ has not been improving since my last post and her episode. I've watched her start to look worse and worse. She is showing more and concerning symptoms daily. Tomorrow, we see the cardiologist; the bird will fly away or start pecking harder.

I guess I'll just have to find a way to put on gloves.

Slumber Parties & Parks

2012-06-30T12:13:00.000-04:00

Last night, the Mad Scientist and Papa drove to New York to help the Editor and Car Guy pack up their house for good and move to Michigan. That left Ma and I with all four kids. So, we had an experiment. The first of what we hope will be many, many slumber parties with all four kids. The night was filled with pizza, popcorn, movies, and lots of fun. The kids did really well. When the last movie ended and lights were out, they all fell asleep without trouble.

This morning, they played together, ate well, and just had fun. It was so wonderful to watch. My heart swelled with love for all of them and how good they are with each other (even if there was some bickering). Little Car Guy, who should really be called the Screen Bandit, was very good about helping the younger kids. And the younger kids look up to him with so much awe and love. My heart was melting, watching it all.

Before it got oppressive outside, we headed to the park. After half an hour/forty-five minutes, Ma was pushing DQ in the swing and the boys were climbing climby things, so I had a couple of minutes to sit and watch some more. I was in my glory and decided to check my email. The one I was waiting for was there: "Yay! They will vacate on July 29." Our realtor was letting me know that our new house will be completely ours on July 29th! I was ecstatic. My world was complete--my sister and her family are moving close to us so our kids can become best friends, the kids were getting along, and our new house was becoming real! I, of course, called the Mad Scientist to share.

As I talked with him, reveling in the news that we will be moving the first weekend of August, I looked at Ma & DQ. They had stopped swinging and were heading to the shade. I hung up with MS and asked what was going on. Ma brought DQ to me. She had a nose bleed, was complaining of stomach pain, and was obviously in distress. She just wanted me to hold her and I did. Her heart was beating so hard. I tried to round up the boys, but they didn't want to leave. I was hanging on by a thread. DQ had only been swinging. She wasn't running! She had been regularly drinking! SHE WAS JUST SWINGING! My emotions were a roller coaster as my baby was turning limp in my arms.

Ma rounded the boys up and explained why we had to leave. The boys started joking that DQ was dieing. And I broke. I knew she wasn't dieing, but hearing out loud the fear that is always lurking in the far reaches of my mind took me over the edge. I sobbed. I tried not to let the boys see me and DQ was so out of it she didn't really know I was doing anything, but I couldn't hold back the tears. I took DQ in my arms, racing toward the car as Ma continued to talk with the boys, tears streaming down my face.

We got to a picnic table next to the car and sat. DQ with her head on my shoulder and tears flowing like a faucet by then. Luckily, by the time the boys got to us, I had calmed down. I got DQ in the car and we decided to go to one of DQ's favorites--Olive Garden--the one restaurant with gluten free food (for me), vegatarian fair (for Screen Bandit and Chef), and stuff everybody likes. Except DQ didn't want to go. She wanted to go home. My baby was passing up basgetti!

Ma took the boys out to eat and I brought DQ in. She just wanted to sleep, but only after trying to vomit. She is now napping, but not well. She cries out in pain every couple of minutes. I'm sure it was the heat, but it was only about 80. And she was just swinging.

Swinging.

I can't stop thinking that she was just swinging.

I hate this. I hate that my daughter can be so happy, doing the thing she loves most in the world one second, and a puddle in my arms the next. I hate that she continues to have nosebleeds for no apparent reason. I hate that she has so little reserves. I hate that life is so unfair to her. I hate that everyone's day gets turned upside down because DQ's body can't handle life. I hate that I can be riding a huge high and that I let DQ's normal life take me down so low. I want to be able to rejoice in the happy that we have and not let the sad parts get me down, but I don't know how. I want my baby to have one day where she can play with the kids and not worry that she could die if we let her play with the kids.

Moving On

2012-06-20T20:29:00.002-04:00

After last night's meltdown on here, I went to bed without dinner. I had cried myself out during the day and collapsed on the bed. Of course, sleep did not find me (until about 3:00am, right when the power came back on and the monitor in the kid's room was beeping me awake). I tossed and turned most of the night and when the alarm went off at 5:30, I promptly ignored it.

When I got up at 6:15, I felt better. I came to decision that since I couldn't do anything about losing the new house and we will be left where we are, I will make the best of it. As I showered, I started thinking about how we could move our washer and dryer so that the laundry room/pantry could be turned into a bedroom for TRex. Is it feasible to turn our half attic into a laundry room? Would there be room for a pantry as well? Would that be a problem when the attic gets 120 degrees or 20?

As the kids ate their breakfast and I finished up packing their schools bags, I noticed a space we usually have full of stuff. That space could be emptied and a small desk would fit so TRex would have a place to do homework. Yes, we'd have a lot of fears to overcome because TRex won't walk there on his own because there are monsters, but we could make it work.

The kids and I discussed how they would continue to share a room, but that I would get the wall decals they had wanted (R2D2 and Mickey Mouse) for their bedroom upstairs instead of their new rooms. That appeased and they started discussing the possibilities that DQ may actually end up with TRex's kindergarten teacher in a year a half. And all seemed okay in their world.

By the time I was driving to work, I was better. I talked to the Mad Scientist. He was on the same page, except he hadn't thought about putting the laundry in the attic. We were moving on.

Then, as MS tried to call our realtor to tell her what had happened, he accidentally dialed the seller's agent. Figuring we had nothing to lose, MS explained the situation. The seller's agent managed to get through to our agent before MS could. From there, negotiations have taken off again, seeing if this can still go through. And just like that, I'm back on my head again, not knowing what is going on.

Thank you all for your kind comments. They have helped so much.

2012-06-19T21:31:00.000-04:00

I am shattered.

We were pre-approved for a mortgage with the understanding that we would rent our home. We were told it would be easy.

We found a home. Fell in love. Put an offer and an earnest money deposit.

The offer was accepted.

We paid for a home inspection. That came back not good.

We searched our sole and decided to go forward with the deal when the sellers wouldn't budge on their requests. We had enough money readily available to cover the down payment and closing costs.

We learned that the problems our inspector found with the house were not what was expected and things could be remedied fairly easily. We were elated, ready to move forward.

We learned that the closing costs were much higher than we had planned. But that was okay. We were willing to pull money out of our 401(k), pay the huge penalty and taxes, because this would allow us time together as a family. This home would allow me to come home at night BEFORE the kids go to bed. I could tuck them in. I could be a mom. Then, I could retire to my office and work a couple more hours each night. Having time with my family was worth possibly having to work years longer. We know there are no guarantees in life. My daughter will probably not be around when I'm 59.5. I want to be with her now. I want to know my son and help him become a good man. I want to see him grow, not just hear about it over the phone. Being with my family while they are here was more important than the money that would be lost in the retirement account.

We decided to move forward with the sale yesterday. We've incurred all kinds of costs for the house.

Today, I learned that I didn't read enough of the information on the 401(k). While there is plenty of money in the account (well more than we need) and it is 100% vested, completely mine, I can't touch it. That money is so well hidden that should the Mad Scientist die tomorrow, leaving me alone with two children, I couldn't pull any of that money out to support us.

All of the money we have paid toward this new house is now gone. Lost to my stupidity. And because of that, we will not be able to get another house. We cannot expand our current house. We are stuck.

Our dream has died. We will stay in this tiny house (another HUGE mistake of mine) for the foreseeable future. My son and my daughter will share a bedroom for who knows how long. I will continue to stay at work past bedtime, only hearing about their day over the phone. We will live amongst piles for want of room to put things away. And the only way to buy a new house? I have to stop investing in my retirement account to save "quickly" for a down payment for a future house and make up for the losses I caused now (a result of student loans--another big mistake).

So, in the end, my retirement account will be smaller anyway. We will lose the money we've put toward the lost house. And I will lose several more years of good nights with my children.

Lesson learned: Never let me deal with money.
____________________________________________

Caveat: I do know that many people would be happy to still be able to own their own home and would be grateful to have all of the opportunities we have, but it doesn't change the fact that this hurts me and has left me an emotional wreck.

Growth

2012-06-17T18:19:00.000-04:00

I've been told I worry too much, but when you see things like your child's growth chart not moving, you tend to worry.

From July 2010, when DQ was the sickest, until April 2011, after DQ's last open heart surgery and just before she was the healthiest ever, she grew about one inch. One inch in nine months for a 2.5/3 year old. That was not good. But, as DQ started to get healthier after surgery, she started to grow. Between April 2011 and August 2011, DQ grew about three inches. The single largest growth spurt ever for DQ at the time her heart was the healthiest ever.

From August until Christmas Eve of last year, DQ grew another two inches. We were excited that the trend would continue, especially since DQ had just started Hizentra and cutting way down on illnesses.

Then, I started to notice her going down hill. It wasn't enough to pinpoint, just something I noticed and felt. The doctors saw nothing they could do. They didn't feel like any changes could help, so we moved our baseline for "concern".

We measured DQ today. In the six months since Christmas, DQ has grown about half an inch. Only half an inch. When TRex was that age, he grew about three inches over six month. And DQ hasn't really gained weight either. She is hovering around the 28/29 pound mark.

She's not growing. My baby is not growing.

All she wants to do is be big. She wants to move out of her car seat into a booster. She wants to be able to climb onto Mommy and Daddy's bed all by herself to hear her good night story. She wants to sit at the dining room table without being on her knees and she refuses to use a booster.

My daughter is four years and three months old. She is the size of a two year old. The year before her last open heart surgery, she didn't grow at all. She stayed the same weight (between 24 and 25 pounds). Are we heading there again already?

Fun Fair

2012-06-13T12:04:00.000-04:00

Please forgive me if you follow me on instagram or are friends with me on Facebook and you've seen these already, but I got great photos if the kids at TRex's Family Fun Fair at school. The kids had a blast.

I can't believe school will be over this Friday. So much has happened over the last couple of weeks. I need to get it out, but there is no time. So, I hope you enjoyed the pics!

Am I Bad?

2012-06-01T05:27:00.000-04:00

Is it wrong that in looking for a new home to buy, our forever home, I am consciously considering how the home will work when the Dancing Queen's health deteriorates? Is there a bedroom on the first floor for when she can't climb the stairs and is too big to carry (after all, she is 29 pounds now!)?

And should I be condemned because while she is busy planning how her new bedroom will look (pink and purple with butterflies), in the back of my mind, I wonder how much medical equipment will we have to fit? What would you think of me if you knew that I worry if we have steam heat that could pose a problem for an oxygen concentrator?

I love the look of hardwood floors in a home. But, now, as I look for our new home, I see hardwood floors as an added bonus because they will help keep down infections should the doctors decide DQ may qualify for a transplant (which is really the only option she will be left with someday, should someone decide she is deserving enough). Does that make me bad?

The Dancing Queen is doing pretty darn well these days. Since we set a new baseline, DQ is not showing signs of worsening. I feel like we are living a "normal" life, even if it is just normal for us. But I know we are on borrowed time (or is it just time?). Will it be tomorrow? A year from tomorrow? Five years? Twenty? I'm planning for forever. And in the back of my mind, I'm haunted that we're going to build this new home and it will be home from which we tell our daughter goodbye. I can't help it. I want to believe that DQ will be here for much longer than me, but I simply can't believe it. I want to ignore that DQ has ever been sick at all, but that is not possible. I want to embrace that is doing better than ever before, but I know that will not always be the case.

I'm not planning on bringing in the medical bed when we move. But I also can't ignore the fact that we may have to do that in the future. And having these conflicting feelings is really hard. I don't want to plan for a future where my daughter is sick, but I nobody has EVER promised me that won't be her future. They've never even told me it is likely that it won't be her future (like is told to most of the parents of children with tetralogy of fallot). And believe me, I've asked.

Yet, I feel guilty thinking about the practicalities of a DQ's precarious future while buying a new house.

And now that I've said it, hopefully, I can leave the guilt behind?

What?!?

2012-05-31T20:10:00.002-04:00

My computer bonged. I had a new email. I didn't much care. It was well after close of business. I was trying to finish up the piece of research I was working on before I headed home.

As I closed down the computer, I noticed that the email was from TRex's teacher. The subject was "June Volunteer Calendar". I knew I couldn't help in the class this month, so I almost deleted it without reading. But, I didn't want to miss any other news she might have, so I opened the email. As I read the short email, a gasp caught in my throat: "Attached is the June volunteer calendar. I can't believe the school year is almost over."

The final weeks of kindergarten! Wasn't it just yesterday that TRex was stressing out about starting kindergarten? Wasn't I just freaking out about whether he should even go? How could my baby, so small and innocent, be finishing kindergarten?!?!?!?!?

I began to cry, big fat tears.

TRex has grown so much in the last school year. He is no longer a little kid. He has matured so very much. And he has learned even more. My son who refused to color because he "hated" it, is now drawing intelligible pictures, coloring them, and writing stories for them to boot!

TRex is reading beginning books to us easier than even a month ago. Each day, he learns more. I swear it is exponential. Yet, I didn't realize the magnitude of this growth until that email.

My son will soon be a first grader.

A first grader.

Wasn't I just changing his diapers yesterday?

I'm not ready to be the mom to a first grader . . .