Inside: My special needs child was given an unfair start. Some days, it’s easy to overcome the unfairness. Other days, it rocks us parents to our core and all you can do is wish to take it all away for your child. Here is my apology and then my un-apology to her.
Special Needs Mom Truths: Apologizing for the Unfairness to our Special Needs Children
A dear close friend of mine is having a “surprise” baby years after she swore she was done. Her husband said to me what most expectant parents say: “Well, just as long as it’s healthy.” And I’m pretty sure I said the same thing when I was pregnant with my first daughter.
But it’s just not true.
You will absolutely love your baby no matter how healthy or unhealthy they are.
In fact, you might just love them a tiny bit more when they’re unhealthy. Because you know they’re going to need more of your time. More of your protection. More of your love.
Parents who face a “special needs” diagnosis for their child experience a myriad of emotions. Grief, resentment, and confusion usually top the list, along with questions of “Why her?” and “Why us?”
It’s taken me years of therapy and reading life-changing books like Harold Kushner’s When Bad Things Happen To Good People, to finally come to realize that this randomness of my daughter’s genetic code is just that.
No need to search for reasons why she has a genetic disorder.
No need to assign blame. Or find explanations.
I’ve finally, seven years later, come to peace with her diagnosis: It is what it is.
And most days I’m good with that. Most days I can stay calm enough to focus on the normal everyday things seven year olds deal with: homework and chores and reminders to please, please, please be kinder to her siblings.
But then there are other days.
Days like today, where I’m smacked in the face with the reality of her disorder and all the scariness that comes with it. Tactless, world-renowned doctors who very matter-of-factly tell you your status quo is shifting. Your normal is no longer normal.
Driving her home after that appointment, my mind was reeling with apologies because I couldn’t help feel sorry for her. Sorry for her reality. Sorry that she has “special needs.”
Sorry for what she has to go through. Sorry that she has “bad days.” I’m just so sorry.
To my daughter,
I’m sorry life didn’t deal you a “fair” hand.
I’m sorry the rare genetic disorder randomly “picked” you. You are the one in 90,000, baby.
I’m sorry your doctors talk about you like you’re not even in the room.
I’m sorry your extra-large print books aren’t in color. I know colored pictures are more inspiring to look at.
I’m sorry when people—including me—label you.
I’m sorry your doctor begins procedures without giving either of us any warning that it might hurt.
I’m sorry when people underestimate your abilities.
I’m sorry when adults point out your differences. To your face. Greeter at Costco, I’m talking to you.
I’m sorry you have an 80% chance of passing on this random genetic mutation to your children.
I’m sorry you have to get checked for cancerous tumors every 6 months.
I’m sorry that because you have to wear a hat every day, every day you have hat hair.
I’m sorry you can’t find me in a crowd unless I call out your name.
I’m sorry you can’t see 3D movies. They’re overrated anyways.
I’m sorry when a blast of sunshine pokes through the curtains and you gasp in pain from its brightness.
I’m sorry you can’t find your friends on the playground.
I’m sorry your siblings find the Easter eggs faster than you.
I’m sorry every time you fall because you didn’t see the step.
I’m sorry you have to strategically choose your seat so your back is always to the bright light.
I’m sorry you future is so uncertain.
But let me tell you what I’m not sorry for.
I’m not sorry how strong this has made you. You have the strength and courage most adults don’t have.
I’m not sorry how determined you are to succeed and how you adapt and overcome obstacles.
I’m not sorry how empowered you have become to speak up for yourself when you can’t see something. You know how to ask for the things you need.
And I’m definitely not sorry that you have come into my world. Despite my unrealistic and naïve hopes when I was newly pregnant with you: “Just as long as it’s healthy.”
My wish should have been, “Just as long as she’s happy and fulfilled. Just as long as I can love her every day of my life. Just as long as she’s my daughter.”
What do you wish you could apologize to your child for? Life can be so unfair, especially for our kids with special needs. What is the most unfair day or event you wish you could erase for them?