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.


  1. Beautiful words, Lori. XO and happy birthday, big man!

  2. This post is breathtaking. Crying happy and confused tears. I want things to be different, but I'm so taken with your words and the way you refuse to let this define you. Will is such an example to us all. Vincent did this birthday celebration last week and I keep meaning to tell you that Will said "Congratulations on being five" to Vincent in the clearest, most grown up, and most polite speech of any one in the class. I so rarely get to chat with him these days (as Michael does most pick ups) that it was incredible to listen to him. His speech is impressive....but not shocking because he is such a champion. He has made amazing progress and continues to amaze. He is such a wonderful kid. I'm glad to know y'all. Biggest hugs and HAPPY BIRTHDAY, WILL!

  3. Happy birthday to the strongest warrior I know! (That includes the parents!). After reading this post I think we need some sort of 3 finger rebellious salute to show support of the resistance!

  4. Happy 5th Birthday, Will!

  5. Jean Davies-JonesApril 25, 2014 at 2:01 PM

    Yeah Will. I am so proud and happy for you. Let this celebration continue for many many more birthdays to come!!!!

  6. May the odds continue to be in your favor, handsome Will!! And I love that movie!
    And in honor of Will's big day, I will give Mitochondrial Disease an extra knee to the groin!!
    Happy birthday Will!!!