If I had a dime for every time someone has said that Jaylyn is lucky to have me as a mom, Id be rich! This is often said to me because I am a nurse. Not only am I a nurse, but for the past 15 years, I have been blessed with caring for special needs children. I had tried other specialties, looking for my niche. Med/surg, rehab, geriatrics, psych. And although there were many aspects I did enjoy, pediatric nursing has my heart. Special needs kids have a light inside them so few can understand. So many have said to me "I dont know how you do it", "it must be so depressing!". To the contrary, there is nothing more rewarding than taking care of a completely dependent child, perhaps on a vent and in a wheelchair that still manages to make others smile! I have had some heart breaking situations but through it all, these kids amaze me with their strength and differentabilities. Knowing that some of these kids are the way they are at the hands of a parent or caregiver, THAT is heart breaking! But hearing a vent dependent baby use their speech valve for the first time and see their reaction to their own voice? Watching those first steps being taken by a child whos prognosis was sure death? Watching them reach adulthood and have loving relationships of their own? These gifts are priceless! I have amazing memories I will cherish along with the milestones of my own children.
And then I had Jaylyn! Not only was she quite the unexpected surprise, so were her diagnoses. All of them! And then everything there was to follow. The therapies, early intervention, doctors appointments, specialists, equipment, explaining to siblings and family. Explaining to friends. Explaining to rude or ignorant strangers. Its never ending. Unless you actually spend a day witnessing all that we do to provide routine daily care for Jaylyn, you couldn't possibly have a clue just how difficult being a special needs parent is! How exhausting. How heart breaking. And yes, how rewarding and fulfilling.
Whats even more heartbreaking is that I have to leave her to provide the same for someone elses child while unable to afford it for her.
At 14 months old, Jaylyn is still unable to do a lot of things babies her age can do. Hold a bottle? Feed herself? Crawl or walk? No. None of that is happening. Well she still army crawls and manages to drag herself around that way but theres no such thing as a quick trip to a store with such a dependent child. I cant carry her in to a store or appointment and set her down for a second like other babies.
I now find myself not comparing Jaylyn to typical babies anymore, but to patients of past and present. Shes not as bad off as this one but shes worse than that one. I wonder if she will always be non verbal, or be able to say some words. Will she ever be potty trained? Will she lose skills? Or one day be able to do the things she should have been doing at 6 months? I know she is happy and at least partially unaware of her limitations. Its somewhat comical and heart wrenching at the same time to witness her scootch off the couch and reach for my fingers so she can "walk". Jaylyn's version of walking is completely assisted with total support. Shes not able to fully weight bare but that doesnt stop her from wanting to go either.
So the happy and enjoyable moments I have witnessed in my career also break my heart on the home front. So is Jaylyn lucky to have me as a mother? I wont dispute that but I will say I am far more fortunate to have her as my daughter!
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