Friday, June 27, 2014

The Race

I've blogged about how I can't envision Will at certain ages. It varies by day based on how well or how poorly he is doing. On an "off" day, I feel like the world is crumbling around me and its the start of the fall down the mountain. On a good day, I am cautiously optimistic and believe that we will have years, decades even, with him.

The other day I was emailing with a very knowledgeable mitochondrial disease friend and asked her if I am crazy for thinking that Will's going to be here for longer than the doctors say. She said she didn't think I was crazy and sent me this poem saying it reminded her of Will. 

As I read and re-read the poem, I couldn't agree more. Will physically falls every day; literally, every day. He gets off balance, goes to fast, is tired, trips or just can't quite get his feet going properly. Nearly EVERY time he gets back up and says "I'm okay" - he just pops back up and keeps going.

While his body is failing him every minute of every day, his determination and resolve to simply get up and keep going is why I have this cautious optimism, this fearful hope that he will win this race. 

The Race
attributed to Dr. D.H. "Dee" Groberg

Whenever I start to hang my head in front of failure’s face, 
    my downward fall is broken by the memory of a race. 
A children’s race, young boys, young men; how I remember well, 
    excitement sure, but also fear, it wasn't hard to tell. 
They all lined up so full of hope, each thought to win that race 
    or tie for first, or if not that, at least take second place. 
Their parents watched from off the side, each cheering for their son, 
    and each boy hoped to show his folks that he would be the one.

The whistle blew and off they flew, like chariots of fire, 
    to win, to be the hero there, was each young boy’s desire. 
One boy in particular, whose dad was in the crowd, 
    was running in the lead and thought “My dad will be so proud.” 
But as he speeded down the field and crossed a shallow dip, 
    the little boy who thought he’d win, lost his step and slipped. 
Trying hard to catch himself, his arms flew everyplace, 
    and midst the laughter of the crowd he fell flat on his face. 
As he fell, his hope fell too; he couldn’t win it now. 
    Humiliated, he just wished to disappear somehow.

But as he fell his dad stood up and showed his anxious face, 
    which to the boy so clearly said, “Get up and win that race!” 
He quickly rose, no damage done, behind a bit that’s all, 
    and ran with all his mind and might to make up for his fall. 
So anxious to restore himself, to catch up and to win, 
    his mind went faster than his legs. He slipped and fell again. 
He wished that he had quit before with only one disgrace. 
    “I’m hopeless as a runner now, I shouldn’t try to race.”

But through the laughing crowd he searched and found his father’s face 
    with a steady look that said again, “Get up and win that race!” 
So he jumped up to try again, ten yards behind the last. 
    “If I’m to gain those yards,” he thought, “I’ve got to run real fast!” 
Exceeding everything he had, he regained eight, then ten... 
    but trying hard to catch the lead, he slipped and fell again. 
Defeat! He lay there silently. A tear dropped from his eye. 
    “There’s no sense running anymore! Three strikes I’m out! Why try? 
I’ve lost, so what’s the use?” he thought. “I’ll live with my disgrace.” 
    But then he thought about his dad, who soon he’d have to face.

“Get up,” an echo sounded low, “you haven’t lost at all, 
    for all you have to do to win is rise each time you fall. 
Get up!” the echo urged him on, “Get up and take your place! 
    You were not meant for failure here! Get up and win that race!” 
So, up he rose to run once more, refusing to forfeit, 
    and he resolved that win or lose, at least he wouldn’t quit. 
So far behind the others now, the most he’d ever been, 
    still he gave it all he had and ran like he could win. 
Three times he’d fallen stumbling, three times he rose again. 
    Too far behind to hope to win, he still ran to the end.

They cheered another boy who crossed the line and won first place, 
    head high and proud and happy -- no falling, no disgrace. 
But, when the fallen youngster crossed the line, in last place, 
    the crowd gave him a greater cheer for finishing the race. 
And even though he came in last with head bowed low, unproud, 
    you would have thought he’d won the race, to listen to the crowd. 
And to his dad he sadly said, “I didn’t do so well.” 
    “To me, you won,” his father said. “You rose each time you fell.”

And now when things seem dark and bleak and difficult to face, 
    the memory of that little boy helps me in my own race. 
For all of life is like that race, with ups and downs and all. 
    And all you have to do to win is rise each time you fall. 
And when depression and despair shout loudly in my face, 
    another voice within me says, “Get up and win that race!”

Thursday, June 26, 2014

Musical beds

When I was pregnant with Will, I was confident I would NEVER EVER let him sleep in our bed.... He would start in his crib and stay there. We all function better on good sleep. 

That worked for a few years, then he was diagnosed with Leigh syndrome. He hasn't slept alone or in his bed since July 5, 2012. Three years. 

For the first few weeks after he was diagnosed we just clung to him. We wanted to be with him every minute we could and him sleeping with us seemed like a good idea. As the years have gone by this little guy turned into a big guy and as I got bigger and bigger while pregnant with Quinn I elected to sleep in Will's bed and leave Neil and Will in our bed. 

Musical beds (not chairs) if you will...

We also started the bad habit of helping him fall asleep. It got to the point where he couldn't really fall asleep without one of us laying there.... for 30 or 45 minutes. This works if you're an only child, have no desire to watch a TV show or clean up the house etc. 

Adding Quinn into the mix this sleeping situation was not healthy, good or efficient. 

We decided to slowly start changing his sleeping situation to give him the much needed independence and confidence that kids get by putting themselves to sleep and sleeping alone. We started slowly, just having him put himself to sleep in our bed. He earned stickers and did great. 

This past week we moved him to his own bed. 

The first night, Neil and I both had a hard time accepting this. We know it's the best thing for Will, but there is something extremely comforting about snuggling and hugging Will and falling asleep with him. I never want him to be afraid or alone. 

But, Will has totally rocked it. While he still yells out for me in the middle of the night, he seems to have embraced it. I am so proud of him! I also got a clock that shows a bunny awake and asleep. He has to stay in bed till the awake bunny lights up. This is a challenge, but slowly he's getting there. 

One day, I will sleep through the night again. :-) 

Perhaps this is one of my lamest posts, but getting Will to put himself to sleep and do it in his bed alone is a big accomplishment! 

Quinn's sleep is a mixed bag - she usually wakes up once or twice and one of those times needs some help to get back to sleep. I tried to cry it out one night and it took me 30 minutes to calm her down. So that path isn't for us, but fuss it out for five minutes appears to be slowly working. She, however, has started in her crib and will remain in her own bed! 

Bed time hugs

Will "chilling" in Quinn's high chair while watching Wheel of Fortune; he new favorite show. 
He likes to sound out the letter and then associates it with one of his friends name at school.

She started rolling over last night and sleeping on her belly. Look at all that drool on her crib sheet. 
Can we say teething??

Friday, June 13, 2014

Hot, happy and healthy

It's hot. Hot as hell. I hate the heat because it means Will has to wear his cooling vest to attempt to help him regulate his body temperature. I feel like a caged animal on the weekend - it's too hot to go anywhere and the places we could go (eg. play gym) are just beyond his physical abilities. So we improvise...  water play, trips to "fun" stores, swimming and playing every sport imaginable inside the house. Shockingly, nothing has been broken... but the summer is young.

Will seems to be doing okay with the heat. We had a routine check up with the neurologist this morning. All is good on that front.

Top Two Things I Hate Doing With Will:
-Getting him to pee in a cup (it simply doesn't happen)
-Taking him to the dentist (dreading that appointment in July)

Just about everything else is manageable. These two items SUCK. I laughed this morning when they handed me the pee cup. It was all I could do. He had just sucked down a juice box and I thought for sure, this time it will work. Nope. 15 minutes of trying / screaming / crying / laughing / sighing / resting his head on my shoulder and no pee. This kid pees non stop. He's like a dog constantly marking his territory, but today, no pee. Of course, we got to school and he peed a ton. Looks like the urine capture bag is once again in his future.

Beating the heat AND playing sports at Academy. 

I was having a conversation the other day with a fellow mighty mito mom. We were discussing how much we hate Leigh syndrome and how it robs our children of so much. I feel so guilty that Will can do so much, while her son struggles to roll over. While each level of abilities has its challenges, she commented that it would seem much harder to parent and have the abilities Will does, but missing some crucial ones like balance and mobility. Will can appear so normal, that it's easy to forget he has limitations.

He asks how many more years till he is 21 (clearly takes after his dad on that), or that he wants to be a fireman when he grows up. It's a weird place to be - I don't want to lie, but I actually don't know the truth. He might just do all that. I pray and hope every day that he does.

I picked Will up from school the other day and one of his teachers was telling me about his day. She said they were jumping on the trampoline (a small indoor one / one kid at a time) and Will said he couldn't do it because he can't jump.

Of course that broke my heart, but then she said she told him, "Oh yes you can!" She pulled him up on there and started helping him jump. I had to breath deeply so I wouldn't fall apart crying.

It's people like that who make Will's life so full of happiness and fun times. We modify so many things so he hopefully feels "part of the group" - a group that is now on soccer teams, participating in swim meets and experiencing a level of independence that he may never know.

Will has started getting his clothes on in the morning by himself and doing his hair. He pretty much only gets the front part combed down and looks like Jim Carrey on Dumb and Dumber.

Working on "self-entertainment" 

First swim of the summer!

I can't leave out our little Quinny or Quinn Bear as Will likes to call her...  She is now 5 months old, eating solids and started at a part-time Mother's Day out program. She is cutting her bottom teeth in, hello drool.

Look mom, I'm drooling. Constantly. 

Not happy. She hasn't quite figured out how to sleep at school; so we usually get a grumpy bear in the afternoon.

Post bath. Not much hair to wash yet. She has a top fuzz, then a bald ring and finally a little mullet.

True to form for a second child - Quinn's first day of school photo. 
Kind of forgot to get one at school or even with play clothes on.