I am so excited to begin a new series of posts here in my little corner of the world that I am calling, “In Her Shoes.” From time to time, I want to share with you some of the incredible women that I am blessed to know, and what it is like to walk for a bit in their shoes. Today I am honored to have my friend, V, who is going to share a little about her life as a wife, and mother to three beautiful children – one of whom was born with Spina Bifida. V shares more of her family’s journey at her blog, Theological Housewife.
When I was asked to write a post talking about what a “mile in my shoes is like”… I wish I could say that I wear my sexy stilettos and that a mile is nothing tough. As it is, I usually wear flats, flats that aren’t the prettiest, that don’t always make a positive fashion statement, but that are practical, can handle the dirt, the blood, sweat, and tears that comes from having a child with special needs on this constantly up-hill walk.
I’m blessed to be the mom of three amazing kids. My eldest, B, is an 8 year old boy who is very bright, inquisitive and precocious. My daughter, E, almost-6, is the quintessential girl who adores pink and glittery things. Our youngest, M, is 2, with Spina Bifida, and a bunch of medical complexities, yet in spite of that he is the happiest, most easy-going kiddo you’ll ever meet. My husband, J, is my rock, my balance, my heart.
Every day is full. Full to the top with reading, therapy, imagining we’re in Narnia or Middle Earth, playing, medical procedures and tubes and machines. M is paralyzed from the waist down, so we have a lot of physical aids we use to strengthen him. We homeschool, we are able to keep our lives as even keeled as possible when not in the hospital or having doctor appointments. We deal with catheterizing, feeding through a gtube, a tracheostomy, and all the daily involved care that goes along with those things. Before having a special needs child, a busy week was one or two appointments and normal busy-ness around the house. Now, busy is three or four days at the Children’s hospital, and others at various specialists at home or in their offices… on top of schooling and extracurricular activities.
The emotions of being a special needs parent are like being on a constant roller coaster. Most days are normal–but a new variation of normal than what I had “before.” Now, I sometimes feel like I live waiting for the next hospital stay. We have a lot of days where I almost forget the stress and worry, where I just live out a day with three happy kids who interact like normal, healthy children. Other days, I live with the constant reminder that my youngest child is medically fragile, that each breath is a miracle, that he has lived more days than many specialists have expected him to, but he’s not out of the woods.
There is a certain sort of grief that goes with being the parent of a child like M. There is a certain “split-personality” that I have, that Jekyll and Hyde of joy and grief. Joy that my child lived, that he has beaten so many odds. Grief that each day is a struggle and each day is one where he suffers pain that I can not imagine. I don’t live in a constant state of worry, which I think some would assume I would. Nor do I live in a constant state of acceptance and magnanimity towards everything. I’m tired. I live in a constant state of not being sure of what is next, and not planning more than 4 or so weeks ahead. But despite that, I wouldn’t change it for the world. As difficult as the days are, as hard as it is to see my son in pain and all of the struggles that he has, God has blessed us all beyond measure just by knowing M.
Linking up with Women Living Well…
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