So I'm still worried about Elias.
(As if that will ever change.)
The other night he stood at the edge of our kitchen, holding onto the wall. "Come here Bud," I said from the recliner in the living-room. And he dropped to his knees and crawled across the wood floor to reach me.
Before break he could walk the halls of school without his forearm crutches, using only a handheld sturdy-bottomed cane for support. Now he seems off balance even with his two blue walking sticks.
We thought he either pulled a quad muscle or rolled his ankle but we have yet to isolate the source of his pain, or his dis-coordination.
"Has his Cerebral Palsy progressed?" One of the school Noon Duties asked.
Um....
God, I don't know.
He seemed better toward the end of our vacation and I believed he was healing from an injury; and perhaps, like most of us, as he felt better he pushed himself more and has just re-hurt whatever caused him to lose the ability to walk in the first place. I don't know.
"I just don't know how to help him. What to focus on." I said to Nick last night as I wiped a tear from my cheek. "Where do we begin? It just all feels so hard."
He wrapped his arms around me. "It all is hard." And we stood together, not knowing, but together.
80% of parents of special needs children file for divorce. And I can see how easily couples lose their connection amidst the confusion of caring for a child with so many needs.
Visual impairment, cerebral palsy, Autism, incontinence, chronic lung disease, not exactly love letters.
And yet somehow Nick and I care more deeply today than we did as love-struck treckers hiking across the Alaska Range.
And every day I know I am lucky.
As the parent of a child with multiple disabilities it is often easier to say no to social events than it is to attend. At parties one of us is always hanging with the kids, making sure Elias doesn't fall or head butt a toddler. Sometimes I avoid public events because I don't want to face the stares of the curious kids who cant stop watching the boy with canes. There's the diaper changes that grow more difficult as Elias grows older. The meltdowns. The obvious difference in the way he plays or where his attention lands. His complete disregard for personal space. Oh, I could go on and on here but I think you understand.
So we often choose to stay home or head to our little haven above Lowell Point. But its OK because when the kids fall asleep, I'm with my best friend, a man who still makes the butterflies in my tummy dance, a partner who listens and makes me laugh from that place where humor overides heartache at the most unexpected times.
Neither of us have answers for Elias. We both feel inadequate and overwhelmed and we respond in different ways to these emotions. I write and cry and talk. Nick builds and creates and retreats. We both play hockey and soccer and bike or run or ski or elect any activity that gets us outside and moving.
What we don't do is blame each other. We choose not to tear away at our foundation through petty squabbles. And so when I pull out of the driveway before unplugging my car on a night when its minus ten degrees, possibly disconnecting the block heater, Nick helps me fix it and gives me a hug before I go to my hockey game.
"I'm sorry you have such a spacey wife," I say.
"Its OK," he smiles.
Later, as we sit on the couch, and I cry again about not knowing where to begin with Elias--Do we do an x-ray? An MRI? See a neurologist? An orthopedic? Oh and we still have to schedule an appointment with the ENT. And we see the eye doc next week. And what about his new diagnosis of Autism Spectrum Disorder and ...--Nick looks at me with his waterfall eyes and says, "We will get through this, you know."
And I believe him. Even if the way remains unclear and the "this" has yet to be fully identified, I believe in us.
And I believe in this quirky little family of ours.
all my love to you and yours Christy. You give me strength! XO
Posted by: Kimberly Sherman | 01/06/2012 at 07:12 AM
What a great family picture!!!Yes, you are so lucky to have such a wonderful supportive husband and family when you have such a hard road to navigate. You are doing great and especially because you don't keep it bottled up inside where it can grow and fester. Lots of hugs and Happy New Year
Love always,
Noël (It is almost time for us to spend Florida time with your parents!!)
Posted by: Noel Dennehy | 01/06/2012 at 07:17 AM
I don't know if you are asking for advice, but maybe the first place to go would be Elias' neurologist so he can rule out the CP progression first.
Per my ds' Psychiatrist, one of the characteristics of Autism is that the children are not 'in tune' with their bodies. I find this one of the most frustrating aspects myself! My ds never tells me if he ails, I have to just go by instinct.
You are spot on about attending social functions! When we go anywhere, we split up also and one goes on 'Randy duty'. We even have a bag with sensory items to keep his hands busy mainly for restaurants or movies (soft rubber ball, mini sensory blanket and a bean-bag bear).
I wish you the best on Elias and bet that he will be fine in not time!
Posted by: Lee | 01/06/2012 at 07:26 AM
Beautiful entry. That is one beautiful little girl and Elias is a dead ringer for his amazing momma :-)
Posted by: Becka | 01/06/2012 at 07:38 AM
This is an extremely random comment from a speech therapist down in Texas who reads your blog as a reminder that all of my students have parents and all of those parents just want the absolute best for their children. Reading your blog makes me work harder for those kids.
Also, I always think Olive is such an exceptionally beautiful little girl. And that comes from a mama of three little girls!
Posted by: Lisa | 01/06/2012 at 08:14 AM
I think your husband has it right - it is all hard. It's like the kids book "We're Going on a Bear Hunt" - you can't go over it, you can't go under it, you can't go around it, you have to go through it. I can't help, but I will be thinking about you and your family, and worrying about Elias even though we've never met. And I love the family photo and and wow, Elias looks just like you! Parenthood - such connection on so many levels, both painful and wondrous. Thank you again for writing about it all - yours is my favorite blog ever.
Posted by: Alison | 01/06/2012 at 11:12 AM
Like a love letter to Nick. Beautiful. So glad you have each other for support. I agree about the vote for a neurologist. I think that would be the most helpful person to clarify it. Trust your momma gut about your sense but if you think he's really changed from his baseline get someone else to weigh in on it. In the meantime curl up with that beautiful family of yours. will be waiting for an update and thinking of you.
Posted by: Kate | 01/06/2012 at 04:24 PM
Just throwing an idea out as a mom with a 6 year old daughter with CP. She walks independently, but it seems that every time she grows, she must recalibrate her body. An added inch causes her to regress in her skills, balance, and speed. Just as nothing else in their development was seamless, physical growth is also a jagged interuption. I don't intend to diagnose, just an observation we have made with Ellie.
Your fears and frustrations are shared. My husband and I have the same teary conversations. Thank you again.
Posted by: Kimberly | 01/06/2012 at 04:50 PM
Nick is a wonderful husband, father, friend...just as you are a wonderful wife, mother, friend, and on & on. Great people, you're lucky to have each other and the calmness in the storm that that provides.
Posted by: Stacey | 01/06/2012 at 08:24 PM
I haven't read a lot of your stories in awhile, maybe because they make me cry and crying just hasn't been something I've "allowed" my self to do. Each day with a special needs child consists of so many unknowns..let alone thinking about the future! You are so amazing in how you can write about your feelings and your everyday experiences. I agree with your comments on your relationship with Nick. My marriage is stronger now than it has ever been. I am so thankful for that. And yes, the daily challenges of parenting put the small squabbles in perspective. I hope each day brings you new hope for Elias and for strength in your family. Thank you for sharing your life with us!
Posted by: Jennifer Mendenhall | 01/07/2012 at 06:16 AM
As always, I am so humbled by the wisdom, compassion and respect of my readers. Lee, I'm always open to advice and meant to call our Neurologist on Friday but will next week. Thanks for seconding this Kate:) And Kimberly, I hadn't thought about a growth spurt affecting his mobility but it makes perfect sense so thank you for offering this insight. Lisa, I loved your "random comment" and thank you for the work that you do and for wanting to see the whole picture of the parents' hopes and fears AND for your kind words about Olive. I'm biased of course but I think she's pretty damn beautiful She seems so far to have Nick's feature with my eyes, where as Elias, as Becka and Alison point out, has my features with Nick's beautiful blues. Alison, thanks for the "favorite blog ever" comment, that makes my day. Noel and Stacey, hugs to you both--thanks for your belief in this little family of ours. Jennifer, I know you've also had your fair share of unknowns and I can understand where sometimes you just can't allow yourself to cry; I;m glad you also have a strong foundation with your husband in order to get "through" it all. Thanks all for following...
Posted by: Christy | 01/07/2012 at 02:36 PM
"a partner who listens and makes me laugh from that place where humor overides heartache at the most unexpected times."
...I think this is the secret of life.
And you put words to it.
Posted by: Greta | 01/07/2012 at 05:24 PM
Here just to send more warm thoughts. I think the commenters above have covered some really great suggestions. It is hard, but you will get through this together. One step at a time.
Maybe a little more light for you: a recent study showed that the divorce rate is about the same for parents of children with an autism spectrum diagnosis as for the general population of families with kids (http://www.sciencedaily.com/releases/2010/05/100519143403.htm if you're interested). A husband who is your best friend and makes the butterflies dance leads me to believe that you will make it through together.
Posted by: bec | 01/10/2012 at 04:02 PM
Greta, you made me smile, big, thank you!
And Bec, I'm off to read the article now, thanks for sharing. I too believe that Nick and I will make it through, even when, especially when, it all feels so hard.
Posted by: Christy | 01/11/2012 at 08:06 PM