Having a baby can be one of the most joyous occasions in your life.
You dream of what this little human is going to be. You have it all figured out, including who they will be.
You’ve preconceived what their personality is like—how athletic, creative, and beautiful they are. And just how great their life will be. All this because you know in your heart of hearts they’re going to possess all of the best qualities of you and the other parent.
What we aren’t told is there are chances our child will not be what we have envisioned. There is a possibility of mental delays and physical disabilities.
No one prepares you.
No one prepares you to miscarry when you’re a healthy teen or young adult living a healthy lifestyle. No one prepares you for when you conceive again. No one prepares you for when the little one is born and isn’t gaining weight, labeled failure to thrive.
They put you on an every two-hour feeding schedule. You’re killing yourself to still provide, and produce, and nourish this little being with everything in you to be accused of neglect by the doctor.
No one prepares you for:
>> Every other day weigh-ins.
>> Admissions to the hospital.
>> Months of tests, blood draws, and being the one who pins your infant down to the table.
>> A diagnosis.
>> Specialists and therapies.
>> The paperwork and how to advocate.
>> Having to constantly critique your child so that you can accurately relay to the health care professionals what your child is and isn’t doing.
>> Your child going to school—the Individualized Education Plans (IEP) and Arc meetings.
>> The grief of not having the child you thought you were going to have.
What follows? You’re in this state of shock. Trying not to compare your child but who are you kidding. You compare your child to every other child you encounter.
You blame yourself for every little thing you feel like you did wrong during your pregnancy. How could your body not do the one thing it was made to do? You tell yourself you’re not doing enough, you’re never enough. You’ve failed them; you are a failure.
Then there’s a glimmer of hope.
They are getting along with other kids, they’re coming along in speech, and you’re thinking to yourself maybe, just maybe, my kid will be normal.
They’ll pass and no one will know that they have a disability. Then reality smacks you.
A random mom at the park asks if they have Down’s. You get a report card that is covered in “areas of concern” regarding grade level expectation. Your child is never on the growth chart. A young kid asks you why they’re so small or a personal favorite, “What’s wrong with them?”
No one prepares you.
When these things happen, you smile, nod, and explain their diagnosis. You smile and act like they aren’t the most ignorant beings you have ever met. After you are home, crying at the kitchen counter because try as you might, you can’t help the hurt feeling and worry about what the future holds for them.
They tell you they want to be a mom and a teacher when they grow up, but with each passing year you aren’t sure if that’s going to be a possibility. So, you smile and tell them what every good parent tells their kid, “You can be whatever you want when you grow up, baby.”
Again, you cry because that feeling is back. The feeling you need to do more and be a better parent. The feeling that you’ve failed them. All because, no one prepares you.