Wake up. It’s not a nightmare. It’s reality. And you need to get a handle on it.
You’ve just learned you are a special needs parent. And whether this discovery came shortly after your child’s birth or years following it, the hurt inside is the same. You wanted so many things for your child: love, success, a happy-ever-after. So many things that now seem impossible.
I’ve got news for you: You can still want those things, not because you’re chasing a pipe dream, but because they’re still possible. And I should know. My middle son suffered a stroke in utero, and the love, accomplishments, and joy he experiences and bestows upon us daily are priceless.
I realize the mourning process isn’t over yet, that you’ve got many more tears to shed and countless divine beings to curse, but that’s just going to have to wait. You’ve got a child who needs you and responsibilities that can’t be put on hold.
You can feel sorry for yourself later. Right now, here’s what you’re going to do.
March into that bedroom and swoop that child up. Cuddle him in your arms. Tell him you love him. And promise to do whatever it takes to give him the life he deserves.
Be patient with those you know. People are going to stop by, call on the phone, and send messages to your social networking profiles. They’re going to say things like:
God only gives special children to special parents.
She’ll be OK. You can barely tell something’s wrong with her.
What do those doctors know anyway?
Resist the urge to throat punch them. They mean well.
Love your friends. They are not going to know what to say to you, are not going to want to tell you the exciting things their kids are doing or how well the new baby scored on the APGAR test for fear you’ll hate them.
Don’t take it personally. They don’t understand – can’t understand.
Forgive your family. Family members will act strangely around you and your child. They’ll be afraid to hug him, afraid to trigger his disability.
Excuse their ignorance. They don’t mean to be insensitive.[/nextpage] [nextpage title=”Page 2″ ]
Tolerate your co-workers. Colleagues are going to expect you to get over it, to get back to normal before you’re ready. What they don’t understand is that normal has changed forever, that you don’t even know what normal looks like anymore.
Don’t trash your desk or hand in your resignation. Not yet, anyway.
Get yourself to a good counselor. Therapy is therapeutic. Really.
Dig around for an expert pediatrician. Make sure she’s had experience treating children like yours. Don’t worry about being disloyal or burning bridges.
Resist the urge to research every last bit of your child’s diagnosis on the Internet. You’re not going to like what you see, and it’s not going to make your child better.
Hunt for a good support network. You’re going to need it. There are plenty out there just waiting to give you the advice and the open ear you crave. Search social media outlets or contact your local hospital for tips on worthwhile groups to join.
When you’ve done that, get a trusted friend or family member to baby-sit for an afternoon. Go home, climb into bed, and cry. Cry the ugly-face cry, the soundless cry, the hard cry. Cry until there are no tears left to shed.
Take a long, hot bath, pick your child up from the sitter, and get on with your life.
It will be OK, you will be OK, and your child will be OK. Everything will be OK.
Trust me. I know all about it, remember?[/nextpage]