|photo by Jennifer Upton|
For the 2013 holiday season, I am hosting a blog series called Hurting for the Holidays. Twenty-six amazing guest writers are sharing their hearts, hurts, and helps to help those of us who carry an internal ache to navigate this celebratory season. Find all posts in the series here, and participate via social media through the hashtag #HurtingfortheHolidays.
She literally thought she could just skip past the holidays as if they were just another day this year - as in - not participate. Thanksgiving came and went. She’d made a turkey and had family over, but, in a way, it was just another meal. She didn’t decorate. She didn’t make homemade rolls. She didn’t make homemade pies.
Everything is different this year. She now lives in a different state, in a different house, with a different climate, goes to a different church and has different friends. She and her husband relocated their whole life in hopes of more healthcare options for “the baby” as well as the hope of extra help from relatives living close by. Shedding and falling apart, their tried and true Christmas tree didn’t make the cut during the move. All they had left of their Christmases past were old decorations, collections of photographs and fading memories. And now, she just didn’t feel like creating new traditions or decorating a new tree. This is not her home. This is not her real life. So when her husband insisted after Thanksgiving that she put up a Christmas tree, her heart balked at his request.
Just over three years ago during a routine ultrasound, they found out their anticipated third child had severe brain damage later described as a Dandy Walker Malformation as well as numerous physical anomalies. They were given the worst case scenario. First they were told he wouldn’t live to be born, but if he somehow survived birth, he would only live for minutes, hours or days. They were encouraged to abort. However, unable to murder their own child, they proceeded with the pregnancy encompassed by prayers of family, friends and even strangers.
At the time of his birth, they only stipulated that he would not be put on a breathing machine. If his brain and lungs didn’t want to work, then they would accept the outcome.
But he breathed. A shallow whisper, a wheezing whistle, the breath of life.
Thus began her journey as a “special needs mom to a medically complex child.” A club she’s hated and resented being in. A club no one ever wants to join. And somehow, here she is, almost three years later, still in the club. While getting easier to accept, she wouldn’t wish it for anyone. But she also wouldn’t go back and kill her child to avoid membership. So everyday she feeds him through a g-tube inserted into a hole in his stomach, monitors his shunt placed for hydrocephaly, gives him medications for seizures and reflux, transfers his level 5 CP body from beds to baths to floors to wheelchairs, and drives him all over the city for therapies and doctor appointments.
Life has been an adjustment. She’d hit some lows this past year, really questioned everything. EVERYTHING. But finally, while everyday is challenging, it's not as upsetting. And while hard at times, she was trying not to question anything or wish for anything to be different and just live.
They go to Home Depot. She picks out the least expensive tree she can tolerate. It isn’t perfect, but at least they have a Christmas tree to satisfy her husband. Preloaded with lights, all she has to do is assemble and plug it in. She thinks she is done until her husband informs her he expects it to be decorated. She finds three boxes that are marked Christmas and forces herself to hang the old ornaments. It takes her all day not excluding a few tears as many ornaments remind her of a simpler life before “the baby”.
When she finishes, she realizes she doesn’t have an ornament with the baby’s name on it. Somehow he hadn’t made it into the life they once had; traditions had been put on hold; time had stopped. She starts to feel sad about this until, for some reason, the discovery gives her an idea. Beginning as a shallow whisper, a wheezing whistle, a tiny breath, she begins to feel more excited about the season.
Shopping for an ornament means she has something to look forward to, something to add this Christmas that will symbolize their new life here in this new place, something that could tie them to this house and help it become a home, something that would become part of new traditions, and something that would include their precious little boy miraculously approaching his third birthday.
I am without words at these powerful writings from Rachel's heart. What is your hard miracle?
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