Sharing my struggles of the past few weeks: Something I’ve been struggling with lately is the weight of making so many conflicted decisions for Benny’s care… and honestly, it really shows how badly we need more doctors specialized in complete care for children with cerebral palsy. We need more collaboration between specialists. More doctors willing to look at the WHOLE child not just one body part or one specialty.

Recently, we were told Benny needs hip surgery. The surgeon says yes. Some therapists, chiropractors, and other doctors say no.

Yes, his hips are dislocated.
But the bigger picture is:
Is he in pain? No.
Is it restricting him? Some, but a lot of that is also from his extensive tone.

And even if we do the surgery… the tone will still be there, potentially affecting the longevity of the results. So then what is truly the best option right now?

Could we try Botox first? SPML? More conservative approaches?
One doctor says absolutely not. Another says absolutely yes.

Then we saw a specialized eye doctor who recommended eye muscle surgery. But every therapist and neurological specialist we trust says no that Benny’s eye drifting is likely coming from tone and neurological issues, not just the eye muscles themselves. Their concern is: if you surgically alter the muscle, but later gain better tone control, you can’t undo that decision.

So which is it?
How are parents supposed to know?

And that’s the hardest part of all of this.

At the end of the day, I’m not a surgeon. I’m not a neurologist. I’m not an orthopedic specialist. I’m just his mom… trying to make the best decisions possible for my child with completely conflicting opinions.

Sometimes I don’t want to be the care coordinator, researcher, decision maker, and advocate. Sometimes I just want to be mom.