Thursday, April 24, 2014

Happy 5th Birthday Will!

May the odds ever be in your favor. A quote from the Hunger Games trilogy has been floating in my head this week.

If you haven't read the books, I highly recommend them. The premise is that they select a boy and a girl from different districts to compete to the death. Only one child wins and they are supposed to kill 23 other people (demented I know). For some sick reason it reminds me of what I fondly call genetic roulette.

1 in every 77,000 births result in Leigh syndrome.

We are that one. The odds were not in our favor.

But today, I can say that Will has been LIVING with Leigh syndrome for five years, two of which we spent in utter and blissful ignorance that anything was even wrong.

Today my little guy is five years old.  On July 5, 2011 we were told Will is unlikely to live to see his teenage years. Most children with Leigh syndrome pass before they are even 5 or 6. I still remember sitting in that room, a room I asked them to never put us in again, holding him in my lap, squeezing my arms around him thinking they had the wrong lab results, crying uncontrollably. 

After that day I would not allow myself to envision my son past the age of five. It was too painful. I couldn't stop the what if scenario's. I still can't stop them, but I am in better control now. My heart needed to mourn and eventually start healing.

I'm still mourning the loss of what could have been, but I have been able to heal. I'll never be whole again nor blissfully ignorant, but I can be happy. I have so so so many reasons to be happy today.

Can I see Will as a 10 year old? Not really. Can I see Will as a 6 year old - you bet. When Will is 10, Quinn will be 5. The same age as Will is now. I pray that she will get to know the Will we all know today. I pray for another five good years. I pray for another 20 good years.

The odds are in his favor today.  I will never know nor understand why Will has been able to achieve more than I ever dreamed possible when so many others are fighting the good fight, but their bodies are not helping them. I will always be thankful. I will always pray for those suffering.

Today, I say take that mitochondrial disease. Will is beating your ass and we plan to keep at it. Every day, every therapy, every doctors appointment, every drug, every anything that might offer a glimmer of making sure he has a fighting chance.

I lay down at night praying for a cure and I wake up so many mornings thinking that we might actually be experiencing a miracle every day, every minute with him I see a glimmer of possibility. Even in my darkest moments, I try to take my "possibility pill" and realize that maybe it is all happening in front of my eyes. 

This possible miracle hasn't come in a syringe or pill, it's come from Will. He is a fighter and he is determined nothing will slow him down. I dare you to tell him he can't do it, he will find a way. I dare you to tell me or Neil that he can't do it. He will do it and we will always help him. We may the be only parents at a gymnastics themed party helping our son do the balance beam or jump on a trampoline, but we will do it (and be hot and sweaty by the end too). Where there is a Will, there will always be a way.

So today my sweet, loving, kind little boy I say may the odds ever be in your favor. Please let time slow down so I can enjoy these moments. Please let me forever remember the happiness and joy you bring to me every day, even when you're having an epic tantrum. I will love you forever and ever and always.

This morning we celebrated his birthday at school. Tonight Will asked to have corn dogs and salad for dinner. Then on Saturday we're having his birthday party, stay tuned for pictures...

Writing his name on his birthday crown.

Singing happy birthday with his special snack - chocolate cake, strawberries and whipped cream.

Cleaning up

Will was asked to be the flag holder while they said the pledge of allegiance. I love this picture of him and his girlfriend. They have been in the same class since age 1 and she has the kindest heart. She has always looked out for Will and been so kind to him.

Shaking hands with all his friends "Congratulations on turning five years old" they said.
Each birthday the parents bring in some photos and the birthday boy gets to show them to his friends around circle. We did a photo of Will and Mickey Mouse and one of the students loudly said, "Mickey Mouse isn't real." After I picked my jaw up off the floor I told the child they must be misinformed and that Mickey is real. Way to ruin it kid!

Blowing out his candles during the "earth moves around the sun" song.
Move slowly dear sun, I need more time.

Monday, April 21, 2014

Hoppy Easter

It's an Easter miracle! I am writing a blog post less than 24 hours after the "thing" happened!

Hope each of you had a wonderful time doing whatever makes you happy, or hoppy :-)

Started with an egg hunt at school.

Dying Easter eggs on Friday

Of course, he wanted to do a Longhorn egg.

These two...

and then these two... (celebrating cousin Cameron's birthday)

Egg hunting

Group pic

Confetti egg on Uncle Tommy

Look at that mischievous face

He got Papa

And daddy

Quinn's first Easter - holding her basket (which was the one I used as a child)

Monday, April 14, 2014

Spring Break 2014

So what if spring break was like a month ago? We had fun, not as much fun as last year's big adventure in San Antonio, but still fun.

Went to the Rodeo Kids Zone with the Cousins

Rode a pony of course

Dug in the dirt (random kid in the middle??)

Made lassos

Rode the train

Went to the rodeo at night with mom and dad

Watching the bareback riding. Will had a bit of a sensory overload = meltown. We ended up leaving early, at his request. We didn't see the bull riding, but he didn't seem to mind.

Got measure for new leg braces.

Went to the library.

Rode in the car at the grocery store. He asks non-stop to do this and this was the first time I agreed and there was an open cart like this.

Took pictures of random things with my phone. A current favorite of Will's.

Played with little sister

More photography by Will - this one was actually pretty good!

Did a good job in OT buttoning to make a crown.

Friday, April 11, 2014

3 months old

Quinn bear is 3 months old... She's a pretty happy baby, loves to spit up and reflux and is enthralled with her big brother. All it takes is hearing his voice and she smiles.

Yesterday was the first day it has been warm enough not to wear pants and long sleeves. A great day to be outside too - if you can keep the pollen off you.

Will is still adjusting to sharing his mommy and daddy, but has gotten a lot better (thank goodness).

I'm still dealing with one middle of the night feed, about 2:30 a.m. but for the most part she is doing good. I think everyone will be a lot happier when her gut catches up with her age and the reflux stops.

We found a great part-time nanny to come a couple hours during the week as I have returned full time to my part time job. Quinn doesn't travel very well in the car, so it's especially nice when there are errands to run I can do them quickly and get all my work done.

Such adorable blankets handmade by Neil's great aunt Cal. I just love them.

Starting to grab, hold and put things immediately in her mouth. She loves her hands in her mouth and can usually get an entire fist in there.

Thursday, April 10, 2014

Will Was Accepted!

We received AWESOME news yesterday, Will has been accepted into the Parish School. It's a school for children with learning differences off I-10 and the Beltway. They work with families to find an individual education plan for each child to be successful. They integrate speech and OT therapy into the day and the classroom ratios are very small. 10 kids total.

This has been a very long, nerve racking process. The application required extensive medical, health and educational history from his doctors, current teachers and therapists as well as completion of a 4 hour cognitive evaluation. After that, we were asked to come to the school and have Will work with the principal to assess which level they believe he would fit best. After that, Will was invited to work two days (back to back) in that classroom level.

We did the classroom visit last week and he did amazing! He apparently charmed everyone. We were able to observe him in the classroom for an hour on the last day. They have a one way window for observation into the classroom. It was so fun to watch him be a success. He was actively answering questions on circle, raising his hand and doing projects.

The classroom visit was also one of the hardest things I have ever done --- dropping him off at the school with total strangers who don't know him or us. Watching him walk off without me. Oh man, I just sat in my car in cried for a bit.

They were tears of sadness and happiness... I really never thought we would get here. Nearly five years old and being able to go to kindergarten. When he was diagnosed I couldn't see him past the age of five and now here we are living in all of its splendor - he has a baby sister, a school plan and he is HAPPY. I just want to bottle up this time of his life, of our lives, and live in it for as long as we can. (Ok, maybe I would fast forward a few months till when Quinn is sleeping better at night).

One of the requirements was to bring a bag or backpack with you. We decided to get him a backpack, a Longhorn one of course... We gave it to him the night before his first testing day and he was thrilled.
He has gotten so big! Nearly 4 feet tall and 52 pounds.