Maybe

Our wonderful neighbor gave me a copy of the parable of the Taoist farmer last year and I think of it often.  Sometimes we have no idea what is good news and what is bad news:  http://www.pediatricservices.com/prof/prof-47.htm  I’m learning.

It’s been such a long time since I’ve updated.  Perhaps because I thought there wasn’t much to share, but then I realized there is so much happening with our boys.  They are changing in front of our eyesDaily.  Like magic.  When I bend over to hug or kiss our four-year-old (almost 4.5, eek!) Luke, I’m not bending as far*, and his conversations and imagination are suddenly much more like a big kid.  There is so much talk of superheroes these days, and he’s suddenly trusting himself and the water more and more at each swim lesson.

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And I’m noticing that our Joel keeps chugging along at his own pace, but making progress all the same.  I realized how nicely he holds his arms up for his highchair tray and how actively he is reaching for food, milk, brother, everything.  I registered just how quickly he army crawls toward the back door (or hallway door at therapy) when it opens.  Recently I watched him smoothly, perfectly turn and navigate a power wheelchair down a hallway and through doorways just after my long conversation with his OT about how learning to drive a power chair will be a very lengthy process.  In the past few weeks, I have seen him take some of the most beautiful steps in a gait trainer that I have ever seen.  Today he took his spoon from me and fed himself yogurt.  All the while, he is laughing, jabbering, and making new sounds that sound more and more like words.  Our favorites are “Da” and “brother”.

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Our spring was a whirlwind of checkup and follow-up appointments for Joel**.  His neurologist is pleased with his overall progress.  His vision keeps evolving as we learn more about how he sees and processes what he sees.  Although x-rays revealed coxa valga (hip bones essentially too straight) in both of Joel’s hips, our orthopedic surgeon thinks they looks pretty good now and that more standing should help.  In a couple of weeks, Joel will have tubes put into his ears and an ABR (auditory brainstem response) test done while he is sedated.  This will hopefully give us more insight into the way his ears and brain are working together.  We know Joel can hear, but we’re wondering how much he’s hearing or how well he’s processing what he’s hearing.

We also continue to wait for a review of Joel’s MRI and additional insight from Dr. Dobyns’ team at Seattle Children’s Hospital.  They are neurologists and geneticists who have done extensive research with brain malformations, and we’re hoping they will be able to give us a bit of a clearer prognosis.  Our CCHMC geneticist thinks that Joel is the lucky recipient of a recessive gene (or more?) from both sides of our families.

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I once asked my mom how she and my dad survived 50+ years of marriage (a serious case of opposites attract), and she said, “One day at a time.” One. Day. At. A. Time.  I think of myself as a recovering worrier, and letting go of the “what ifs” is hard.  (My hubby John is the steady optimist.  I’m the roller coaster.)  But when I truly live in the moment I see my boys playing and chatting together.  I see that Joel has his own buddies just like any other two year old.  I see a young explorer who loves doors*** almost as much as he loves us.  And I see his eyes glow like he’s won a prize when he’s offered an Oreo cookie!

As always, we are deeply grateful to our phenomenal team of therapists.  Joel added aqua therapy this summer, which he usually likes because the pool is 90 degrees.  (He’s definitely not a fan of cold, including ice cream.)

Wishing you long summer days full of the smallest, most important moments!

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*Sidenote, I do realize I’m shorter than most sixth graders…I preempted that joke, dear friends and family.  Carry on.

**Also, I believe Children’s Hospital should have some sort of “frequent-flier” rewards program like Starbucks.  Perhaps one with which I could earn Starbucks for sitting in the waiting room???

***Particularly amusing since my husband’s family has been in the door business for a century or so!

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4 thoughts on “Maybe

  1. Thank you for sharing. Your words share such joy. I love seeing the pictures and videos of your boys, such cuties. Life is never as we planned it but it is as it is and that can be beautiful. Thank you for sharing bits of your journey.

  2. I am forunate to live next door to this great family. I three granddaughters, so it’s fun to have little boys around to be the recipients of my “finds” – the bird’s nest from the door wreath and rocks for Luke’s rock collection. I see Joel’s progress and witness the love his parents and big brother have for him. There is a reason God choose this family for Joel

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