Yes, I am a Special Needs Parent

This is part of a new series of posts called “Yes, I am A Special Needs Parent” from special needs parents of all stripes. The idea for it was born after special needs parents came together at BlogHer  for a mini conference. It’s meant to illuminate the different experiences that parents of special needs kids have and the struggles and joys we face. If you are interested in being part of the monthly series, please email Kate Canterbury at theguavaliciouslife at gmail dot com.

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Today’s blog post is by Jessica Larkin Mistak. Jessica is a wife, mother and a Polish Irish Princess from Metro Detroit. During the day she works in Government Relations for the largest county in Michigan. But her primary occupation is kiddie concierge to her 2 year old son. A causeaholic she participates in the March for Babies and the Detroit Hydrocephalus walk among many other activities. Jessica doesn’t blog but can be found on Twitter as @JessQueenOfMess. Today Jessica shares with us how hard it is to let go but how important it is that we do.

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Getting Out of my Son’s Way

John was born at 28 weeks and 6 days. I had gone into labor at 26 weeks and my delivery team was able to stop the labor. My son apparently inherited my patience and made his debut on Easter Sunday 2009. He was born with sepsis which lead to many complications in addition to the challenges faced by many preemies. The first week of his life was lived hour by hour. Within the first 24 hours we were given the option to discontinue support. There was something about John that just told my husband and I he was a fighter, so we decided to we would wait a week before making any such decision. If after a week he did not improve or his condition significantly deteriorated we would reassess how we would proceed. That first week was tough. He suffered a grade 3 bilateral interventricular hemorrhage which resulted in periventricular leukomalacia (PVL) and Hydrocephalus. But an amazing thing happened. Just as I was released from the hospital he turned around. He had a shunt inserted at 4 weeks and was released from the hospital at 7 weeks on no medication, just vitamins.

We were fortunate because we understood due to the PVL it was more likely than not our son would have Cerebral Palsy. This enabled us to look into early interventions. We enrolled out son in Early On at 3 months and he started PT, OT and speech at 6 months.

Clearly my son is a fighter who has beat the odds at every turn, yet I still seem to have difficultly getting out of his way. What do I mean by this? He is 2 and his favorite red monster is Elmo with Muno (from Yo Gabba Gabba) being a close second. He fancies himself king of the playground. He also happens not to walk yet. So I find myself constantly incorporating PT, OT and speech into every moment of his day. I do this because even though I logically know better, I feel like I failed my son when he was born early and so sick. I have spent every moment since trying to make it up to him by helping him reach his best possible outcome.

But here’s the thing. John has made some of his biggest strides when we’ve given him the space he needs to just be a kid. I need to remind myself he has beat the odds at every turn, clearly he knows what he is doing. And as his premature birth taught us early, some things are simply beyond our control.