The Long Awaited Appointment

I can’t tell you if he’ll ever walk, sit, or crawl, but what I can tell you is he’ll never be in a regular classroom.

 

Those word felt like daggers piercing my soul. I looked to Louie for comfort, only to see the familiar pain burning his eyes. He gently rocked LJ as he looked away from the Neurologist.

This had been the day we had waited most of LJ’s life for. For worry to finally melt away. For reassurance that has never been given by anyone. For unanswered questions to finally be revealed.

Instead, we were left with our heads spinning, our questions mostly unanswered, and our spirit and hearts broken a little bit more by a doctor who couldn’t seem to wait to get out the door.

How could this happen to our little boy? What had he done? Was he unknowingly paying for our sins?

Anger and resentment took a backseat that day as the CT scans and the MRIs were loaded onto the computer screen. It had a devastating effect; we had never seen them before.

There was indeed a loss of oxygen 3-4 days prior to birth. This explains the swelling of his head presented at birth. How the oxygen was deprived will forever remain a mystery and a burden in my heart.

The seizures and apnea were not caused from the medication to sedate LJ for the CT scan (though no one will ever be able to convince us our birthing hospital treated him, or us, right; if a baby with significant apnea doesn’t ever see a doctor, then they didn’t do their job).

The damage was significant though. Your brain doesn’t grow back after something like that. The only thing to do is to do what we have been doing; therapy.

The good news is that it’s not progressive, though I could have told them that. And the possible diagnosis will be cerebral palsy, which they won’t officially tell me until he’s 2-3 years old.

Our OT (Amy) and our new PT (Mindy) were both unhappy with how the doctor treated us. Amy insisted he would be able to sit just fine, since he already has a good amount of trunk control, and Mindy taught me some stretches to prep his legs for crawling and walking.

I can’t explain the helplessness you feel when something like this happens to your child. The longing you feel to take away the struggles you know will be twice as hard for him then for any other kid. The resentment you feel for them not having a fair chance. The guilt you feel from not being able to do anything. The nights you stay up worrying that you’re doing your very best to give him that chance.

But when he smiles at me, I put it in the back of my mind. I know it’s not good for him to think negatively. That he needs all the positive energy he can get. He needs his mommy and daddy to be strong for him.

Thinking back to all the times he’s already proved the doctors wrong, brings me hope. He’s stronger than they thought. He’s healthier than they thought he would be.

Sometimes, he’s my little ray of strength.

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