Sunday, January 04, 2009

Is it OKAY?

I just finished reading Jacolyn's post on "What exactly is your okay?" Jacolyn also has a child with CP and I've enjoyed getting to know her and her triplets via her blog. I haven't had the gumption to write anything regarding the holidays. Truth is, it's been really hard. I am so ready for school to start bright and early tomorrow morning. I try so hard to be positive but I feel like sometimes "its okay" to share the disappointment and frustration because that is what makes this blog real.

I remember people telling me it would be "okay" after I brought Crew home from the NICU. I knew in the back of my mind that it wouldn't be "okay". Almost 5 years later I realize the outcome is actually quite worse than I ever imagined it would be. I know that sounds horrible. However, it never occurred to me that he wouldn't be able to communicate. I didn't realize how frustrated and unhappy he would be to sit on the sidelines and watch. The days are hard and long.

It's a good thing that we can't see into the future. This spunky little 4 year old is determined to experience it all. We bought a treadmill the day after Christmas. The roads here are an icy mess and now with 3 of us running we decided it was time to make that investment. What we didn't anticipate was Crew's obsession with the treadmill. In 9 days I've only been able to squeeze in two good runs on the treadmill because Crew insists on joining me in my runs;) I'm tough but not throw 35 pounds on my back and run TOUGH. If he see's anybody go downstairs he screams and cries until he gets his time on the treadmill. This involves me standing on the sides and holding him upright while he walks at .5 mile/hour (grinning) until he is so tired that his legs are literally dragging. This usually takes about 10 - 12 minutes and then he is ready to give it a go again a few minutes later.
We must constantly be doing something. If you've spent much time around me you've heard me brag about how well Crew is doing with his power chair. There was a day when we didn't think he would ever safely navigate the thing. Still, we have our moments but for the most part he is doing great. Unfortunately for me, we do not have an accessible home and so all his "driving" is done outside. As children typically can be, he does not notice the single digits, the frozen toes or the dripping nose. But what he does see are snowdrifts to conquer and ice hills to climb. He is blissfully happy until mom can't take the cold anymore and calls him inside.... and then he is a MONSTER:)
Tonight, after dealing with two LONG weeks off from school and therapy I experienced one of God's "tender mercies" as he snuggled down with me and fell asleep. I held him and thanked God for allowing me to be his mother, a calling for which I often feel inadequate. I hope I'm doing "okay" with this huge responsibility. I surely do feel blessed to have him in my life. I too have decided after many prayers and tears-- it's going to be OKAY. I don't know how, I just know that it is.

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