The truth is we live with a lot of fear. Things no parent should think about, the stuff of nightmares, consumes us at times. We try not to let it steal our joy and keep us from enjoying every single moment but sometimes it’s difficult. The worries we have are shared by a select few. We’ve become a part of them. Micro preemie parents. Failure to thrive parents. Feeding difficulty parents. Cerebral palsy parents. PMG parents. SPECIAL NEEDS parents.
When you’re pregnant you don’t necessarily worry that something may be wrong with your child. Enthusiastically, you embrace each passing week and the promise of a healthy baby at the end of 40 weeks. Rarely is prematurity discussed and even rarer are birth defects, trauma or illnesses. Often, it isn’t until that test comes back “bad” or an anomaly is pointed out on an ultrasound screen. Sometimes the problem isn’t apparent until birth or maybe even much later. Regardless when the news is given, it can crush all of your hopes and dreams for your child and alter the lives of every single family member.
I’ve become an expert at the grieving process. I feel like so much of my last 18 months has been spent on one step or another that I may be becoming calloused to the pain and the shock factor has worn off. A seasoned expert, I go through the steps quickly. Grief- the road to acceptance- really is a process. I’ve denied, adamantly fought against believing anything that the doctors said. Grown angry and bitter, so much so that no one wanted to be around me but Arick and only then because he “got it”. Bargained with God more times than I care to remember (of this I am most ashamed). I’ve become so depressed that I shut down and couldn’t function as a wife and mother. But in the end I’ve always accepted what I’ve known was true. It’s not easy, the letting go. Because you’re letting go of so much and allowing the unknown in. The fear.
Fear is a fact of life for special needs parents. Many of my fears I don’t talk about and I will only share with Arick. As his parents there are certain things that I think we both grow more fearful of as time passes. Late at night when it’s quiet, when everyone but the two of us are asleep, we’ll talk about them. Almost as if we want to make sure the entire world is asleep before we utter the words, the thoughts, that keep us from falling asleep with ease that particular night. In each other we find comfort, and that bond will be forever. Sometimes, though, I want to talk about it. I’ll have long conversations with his therapists. If his PT is here and I haven’t cried yet something isn’t right. She’ll ask me, “what do YOU think?” and I’ll be as honest with her as I would be with Arick. So, much of the time I’ll tell her. I’ll tell her how scared I am.
I’m scared of PMG. So scared. I hate the long name and the way even medical professionals look at you when you rattle it off. What is THAT? I’m scared that I don’t know how much damage it’s done to his brain. I’m scared that at any minute he could have that first seizure, the one that triggers the chain reaction of the many more he’ll have to endure. I’m scared because he doesn’t talk consistently. He’ll randomly say Momma, Daddy, go and bye but nothing to indicate he will be able to carry on a conversation one day. I’m scared that he will be non-verbal and not able to tell me when he’s hungry, cold or sad. I’m scared that he will be made fun of or pitied. I don’t want anyone to feel sorry for him, especially himself. As his Mom I’ll feel bad for his challenges but I’ll never feel pity towards him. I fear that he won’t be able to walk. That he won’t play sports and be included in the things typical children are. I worry that he will have to undergo more surgeries, that I’ll have to hand him over many more times. My fears for him are endless.
More than anything else, right this minute, I fear that he’s doing too well. He’s incredibly healthy. Doctors are shocked that he was vented for 5 weeks when they hear how clear his lungs are. He’s not sickly or weak. He’s so determined to do things. He’ll leap away from you in an attempt to grab what he wants. He tries so hard to verbalize, he’ll make noises and sounds back to you now when you talk to him. He can army crawl and slide around on his butt while sitting effortlessly. He can figure out toys and play with the working components. Momma is no longer his favorite person. When Arick walks in the door from work he squeals with excitement and starts rocking back and forth. For so long I was his favorite but I actually love that he gets so happy to see his Daddy now. Even if he rubs it in my face. It’s what I always wanted. An indication that he knows who he is and has feelings for and definitive desire to be with him. It warms my heart. It’s strangely ironic…not right at all…to be worried about even the victories.
Avery is perfect to us. When we look at him we don’t see the scars, the IV sites that left holes, the fact that he doesn’t have a proper belly button. We don’t see an imperfectly shaped skull or a lazy eye. A left hand that refuses to work as it should. A 17 month old the size of a 6-9 month old who just began sitting up unassisted. We don’t see cerebral palsy or PMG. We see Avery. We see a miracle. So we’ll take the fear because it’s part of being his parent. We need to wonder about what his future, what our futures, will be like. If we didn’t it’d mean we never got over that very first step.
So here we are, special needs parents. It really doesn’t mean anything except that our child has needs that other children may not. It means we probably get a little less sleep at night. It means we spend more time at doctors and hospitals. It means we know what a gift you have in your “normal” child. But it doesn’t mean we love our child any less. It doesn’t mean our child is broken. It means we’ll adapt and move on. We’ll ensure our child has the best life possible even with all the fear and uncertainty. It means I’ll lay in bed with him a little longer. Hug him a little tighter. And fear everything.
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