Tales of a Misfit Mom: Special Needs
I have a good, good friend. She is brave and amazing and kind and exceptional. She is the mother of a sweet and funny girl with the most beautiful red curls I have ever seen.
She is the mother of a daughter with special needs.
She recognized me when I did not recognize myself. And for that, I am grateful. But admittedly, when she pulled my hands away from my eyes ever so gently, I first felt shocked. And then enraged. Because my daughter, with all of her problems, was not a KID WITH SPECIAL NEEDS.
But she is.
And so I am a Special Needs Mom.
We are a Special Family.
We are labeled.
We are the topic of conversation.
We are the family everybody thanks God they aren’t. Don’t feel bad. I used to do that too.
We are everybody’s science experiment.
We are pitied.
We have become, somehow, less than actual people.
In a way, all of this is our new reality. Our lives are wrapped around Lucy’s diagnosis. In order to keep her safe, I have had to resign my job and keep her home, because daycare is full of dangerous germs and her compromised immune system is unable to handle the onslaught. She sees, at last count, 16 different specialists and two therapists to handle the different aspects of her syndrome. Dealing with her medical issues is a full-time job. I’m not so much an English teacher anymore – I’m becoming a pediatric nurse and respiratory therapist. Soon, I think I may need to look into homeschooling, because sending her to school may be unsafe or impractical or any number of no’s.
But these are not the things I tell my daughter. These are typically also not the things I tell you.
I tell you the happy things. I tell you that she climbs the stairs. And that she is now willingly and happily eating, finally, after a seven-month hiatus. Those of you paying careful attention note that two years is a little late to be attempting stairs; and that seven months is a really long time to go without eating on one’s own. But my point here is not that you haven’t been paying attention, because I honestly hope that you haven’t – my point is that I make a point to share my joys with you and keep the hardest of the hardships away. I do this because in order to maintain my support group, my safety net, I need for you to remind me of the happiness and joy that I need to model for my daughter.
Sometimes, people say insensitive things, I assume by accident: “She looks so normal.” “I can’t believe this happened to you.” “It’s just such a tragedy.” “Maybe this will be her last seizure.” “You’d be crazy to have another baby.” “It’s all so sad.” Some of these sound innocuous, probably -- and I can be a big enough person to acknowledge that no one is mean enough to try to take a swipe at me on purpose -- but when you hurt on a molecular level all the time, these words cut. If Lucy has her “last” seizure, it will be the one that kills her. We can’t believe it, either – but we don’t need it pointed out. Most parents aren’t quite so lucky as to get such a beautiful, smart, patient, wonderful daughter. And we know she looks normal. But look closer, and walk with us, just for a moment. Most parents don’t have to hire a physical therapist to get their kid to walk up the stairs. Being us is isolating.
Most of the time I feel as though I am standing outside alone, holding a fragile child, watching a violent storm approach. It’s coming soon. There is no stopping it. But there is no telling when it will actually be here.
This is kind of a roundabout way of telling you that I’m also afraid all the time. I really just want somebody to hold my hand. I don’t even need you to say anything.
It takes a village to raise a kid, they say. I assume that’s a quote-unquote normal kid, because it will certainly take a hell of a lot more than a village to raise mine. I can’t tell you how much I appreciate the friends and family and complete strangers who have rallied around us to hold us up. The friends out of state who send their friends to check on us. The nurses who find phone chargers someone else left behind. The folks who decided out of nowhere that we were their family too. My favorite red-haired girl and her amazing, honest mom. The Tigers. The people who rally, every time. Every. Single. Time.
Thank you all, a million times, times infinity, forever.
Oh, and just because it is my job to make you laugh: did you hear about the jurisprudence fetishist? He got off on a technicality.
November is Epilepsy Awareness Month. Educate yourself about epilepsy at http://www.epilepsyfoundation.org/.
You can show your support for Melissa and her daughter by wearing purple (the color for epilepsy awareness) during the month of November and posting your picture to our Facebook page.