-When we found out that we would be having a very premature baby with a heart defect who had a chance at being born with Down syndrome, our world was rocked. I was scared and kept thinking, it will be okay, I just hope he doesn’t also have Down syndrome. Then he did. Then I learned it’s okay.
-Then I thought it will be okay as long as he grows and learns to eat, I don’t want to leave the NICU with a g-tube. Then Kaleb had to have surgery to get a g-tube after aspirating, getting pneumonia, and having to be intubated . I learned it was okay as I learned the true meaning behind fed is best.
-When he was born twelve weeks premature with two brain bleeds we were told there was a chance he would have cerebral palsy. I thought oh no, not cp as well as Down syndrome. For a while it was out of our mind, until it wasn’t, as he grew and showed signs of cerebral palsy. Then when he was two we found out he has a rare dual diagnosis of Down syndrome and cp. Then I learned it was okay, as I realized he was the same Kaleb I loved before this newest diagnosis.
-When he received his diagnosis of Down syndrome I remember
thinking it will be okay as long as he is not one of the delayed walkers. I
thought that with my physical education and exercise science background, I
could give him the extra help to get him walking. Now we are five
and a half years in and with the dual diagnoses he still isn’t walking. But it’s okay. I am still extremely hopeful he will walk one day but for now Kaleb and I will continue to enjoy celebrate inchstone celebrations as we work to the big milestone of walking. Lately there have been several celebrations as he uses his walker more and more, as he learns to transition to chairs, and climb steps.
I won’t even pretend that Kaleb’s purpose here on earth is to teach me. I won’t limit him or God that way. But the truth is He teaches me something everyday, often using Kaleb. The lesson that I constantly learn, often daily, is that I am not in control. That even when what I fear or do not yet understand happens, that it will be okay.
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