Monday, May 12, 2014


I came across an article/letter this weekend that focused on celebrating moms of kids with special needs. Sometimes I skip over articles like these, as a mom of a kid with special needs, you get sent stuff like this a lot. But I do try to read and view a lot, to gain perspective, validation, and glean truths from others out there that are dealing with circumstances similar to ours. I'm glad I read this one because parts of it really spoke to me.

This portion in particular:

"Every day, you see other kids doing more, yet you celebrate me. Pushing away sadness, you focus on the hope of my future. You let my simple, small steps lead us forward."

It's been getting a little challenging to see Johnny passed up in physical milestones over the last few weeks. Several of his buddies at church are pulling up, taking their first toddling steps, and moving on to "bigger things". It's kind of hard to see. I completely rejoice with my friends that their kids are meeting milestones. I am so happy for that. I am so thankful for friends that understand me when I say, about their younger than Johnny children, "Ugh. He is already pulling up? That sucks!" They know that I am glad for their kid moving along and that I just need to verbalize the frustration. We laugh and they really understand what I mean. That our kids are supposed to meet these physical milestones, they are supposed to get stronger, they need to grow up, learn, and move on.

But Johnny isn't. And when I see his happy face sitting and "crawling" around the nursery floor, next to his friends' faces striving to pull up and creep along, the fear and panic set in. If I let it, I begin to wonder how "bad off" we are. I begin to think about all the dominoes of delayed milestones we are going to have. I begin to doubt all the times I don't work with him in favor if doing other things that are just as enriching as building his muscles. I begin to wonder if I should shut down our family's schedule and commitments, focusing on nothing but correct crawling, pulling up, and cruising along furniture for days and weeks on end. I begin to make lists of alternative therapies I should look into, dietary regiments and vitamin supplements as if there may be some magic pill that could shut off all the hardships that extra chromosome brings. 

It could be debilitating if I allowed it to stay for more than a moment or two. It could cripple me with doubt and carry over into every aspect of my life and my raising of my children, becoming a hindrance to the values we use to lead our lives in raising our children- try hard, take chances, keep pushing, find enjoyment, and seek fellowship. I could let that fear surround me, creating a fortress around me and my family, building walls that are designed to keep as much out as possible, crushing the spirits of all of us inside. 

I refuse to let the pain and worry control me and my life. 

Just as the original quote said, I choose to focus on my son (and daughters) instead. I celebrate him and marvel in him because he is amazing, not just because of what he has accomplished, but because he is. I have to take myself back to the place where, about two years ago, we first learned about his potential diagnosis and we weren't sure if we would ever meet him. That fear was larger than any fear I could have today of him not meeting certain physical milestones. Through God's amazing grace, we have been allowed to raise our son for 18 months now and every day he makes us happy. We as parents choose to deem that as being enough. Johnny loves us, communicates with us, plays with us, laughs, dances, and chases around the room with us. We as parents choose to focus on those milestones as being just as important as the textbook ones. Johnny, for all intensive purposes, is healthy, and while there are several things we still need to figure out health wise, we choose to thank God for giving us our healthy son who grows and learns something each day. And we choose to not allow that fear to control us, but to fuel us to support Johnny and to push him in an understanding and compassionate way. 

I don't know when my son will walk. I do know that he is getting close to pulling up, that his quads, ankles, and core get stronger each day, and that at some point he will walk, run, kick, jump, and climb. We can be certain of these assurances and I choose to be grateful for that. 

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