Tuesday, February 17, 2015

A heavy month

This past month has been a "heavy" one for us.... High, low and icky about describes it.

The high!
Neil and I attended Will's parent / teacher conference in early February. We learned that Will received awards in music, art, PE and nature learning. Not every child receives these awards, so it makes me even more excited that he was able to be recognized in things he loves. Namely, PE.

If you swapped in some good mito into Will's body we would have a sports playing machine on our hands. He is all boy.

I think the music award might have been my favorite because of the description listed as to why he received the award.

Also during the conference we discussed what would be next for Will. Thankfully, Will has been offered a new school year contract, meaning we will be going back in the Fall. I have had this hidden fear since August that his teachers and the school would come to realize his physical needs were more than they could handle during the day. Heck, they are hard for me sometimes. That day may come, but for today, we're VERY excited to be going back in the Fall.

Neil and I have taken the approach that as long as Will is happy, healthy and safe at school whatever he learns and gets to experience is just the icing on the cake. 

The low
In mid January we received a call from school that Will was having a very bad morning. He was extremely uncoordinated and showing a lot of ataxia. His speech was slurring and he seemed to be disoriented. For example, he was asking his teacher, "Where is my sandwich?" and it was literally right in front of him on the table. The physical stuff and slurred speech happens in varying degrees by the end of the day, but in the morning? Tha's very very rare and the disoriented questions and "weird" stuff is very abnormal.

Neil picked him up from school (it was the ONE day of the year I had a work client in town... of course). He seemed to have a fairly normal afternoon and evening; got good rest that night and even had a thumbs up day the following day. Then it seemed to be a series of not so great days... weeks.... Reports of lack of coordination and more frequent falling. Slowly he seems to be creeping back up to his baseline, but he's taken a couple of bad falls and scared the hell out of me one day.

He fell when we were picking up Quinn and then told me he couldn't stand up on one leg, couldn't put any pressure and he seemed to be freaking out. We got it under control and made it home. Eventually he was fine.

This is easily one of our top five worst nightmares - him falling and hurting himself to the point of twisting, breaking, fracturing etc. He might never recover from that fall and return to his current baseline again. Of course, the guilt associated with not being able to catch him from that fall didn't help my mental status either.

Then, the following week Quinn came home with a 102.4 fever one Thursday and then started the snot, congestion and cough. I think she gave some of the congestion to Will, but thankfully kept the fever to herself. They are both still snotty, but a small win - me and Neil never got it!

Thankfully, Neil was able to rearrange some of his stuff and we were able to quarantine Will away from Quinn during the first 36 hours. What a scramble that was though. We had so many things lined up that day, including one of those damn boot appointments to get the new Ninja Turtle boot just right.

Okay, so maybe there were more lows than I thought... :-)

Clearly feeling a lot better as she was up for some weed-eating in the laundry room. 

And finally, the icky...

We have told Will he has a mitochondrial disease. ICK ICK ICK

Not the prognosis or the magnitude of all of it, but still ICK!

As his parents we have strenuously avoided telling him anything. Likely because we have still been trying to process our feelings and emotions about the whole thing. Well, time crept up on us and now instead of a 2 year old, we have an almost 6 year old who "gets stuff" and it was simply time to open this door for Will.

I remember all four of us were laying in bed Sunday morning (well, three of us were laying and the smallest person was crawling, rolling and screeching). I got a good snuggle in with Will and was laying there thinking that this was one of our final moments of innocence. Pure innocence. He knows something is different about his body, but now we're naming it. We're taking something away and giving something in return. But it doesn't seem like a very fair trade.

It feels unimaginable that one day we're going to have to explain the magnitude and prognosis before he decides to google it and read about it himself.

In the next three months, Will has six various doctors / medical appointments. He's a smart kid, he listens and absorbs everything he hears. We avoid using the word mito or Leigh syndrome around him but it's impossible to do that in a doctors appointment!

So, alas it was time to do the deed. We spent a lot of time worrying, nitpicking and internally freaking out.

You know how college graduation was such a big deal, like you work and worry so hard for so long to achieve something; the moment you receive that diploma should have been life changing, but it wasn't. I found it to be very anticlimactic; thankfully, telling Will also has been rather anticlimactic. At least for now.

We worked with the family /mental health team at Will's school to develop a "Social Story" - essentially it's a short story that explains what mitochondrial disease is and features Will in the book.

The book is amazing. It explains what mito is, how our bodies need energy and how our mitochondria are supposed to provide that energy but that all our bodies do it differently. The art teacher at school illustrated the book, the counselor and principal helped write the content and his teachers and school nurse provided some amazing "kid centered" insights to help. Team Will rocked the house. If you're curious about the book, I'm happy to share it with you, but here are two pages...

Obviously significant time and effort went into this book and we are just so thankful to the entire "Team Will" at The Parish School for this gift.

It's been a weird, full, heavy month. I'm hoping the next month will be a little lighter and a little less intense.


  1. There are no words to convey how I felt reading your update, but you know me, and I'll try anyhow. You, Neil, Will (and cute Quinn) are an incredible team. It makes me so happy to see how Parish has rallied around you and made this book. And I wonder (if y'all haven't already thought this already, but probably have), if this might be a fundraising opportunity to get the book printed and sold through UMDF. The pictures are amazing. It is absolutely and totally unfair that this is the hand y'all have been dealt. I'm still mad as hell about it. But the way in which you are managing and dealing with it should make you proud. Really proud. You are the definition of a mother. Mama bear all the way. Will is such a rock star and doing so well because your advocacy and your support. I'm continually deeply impressed, not only by Will's tenacity but also yours. Sending so many wishes for many more ups.

  2. Love and positive thoughts from San Antonio

  3. Lori, you do such a great job of describing the reality of my world too. It is somewhat amazing. I love the idea of the book. What a blessing to have your community rally around you and support you.

  4. I would love to see the whole book! What a neat idea!