Trust Your Gut

The main tip I have for anyone who has a special needs child is to always trust yourself. No one knows your child the way you do. I have so many examples where I tried listening to a doctor or dietitian and it just didn't work. You spend the most amount of time with your child, you know what their signals are or can just feel that something isn't right.

That first night when Maia choked and turned blue in the hospital I knew something was off. I didn't argue with the nurses because they were so nonchalant about it, but I knew there was something that wasn't quite right. Then Maia didn't eat more than 20 oz but once or twice in a 24 hour period in her first 4 months and I knew again something just wasn't right. It's hard to even put into words what I felt, but I knew she wasn't eating like she should, she wasn't even awake much of the time to truly eat. But who wouldn't be tired if they weren't getting the nutrition they needed.

Then at five almost six months when we finally got the g-tube Maia wasn't able to handle what the dietitian was wanting her to have. She was extremely volume sensitive, but her stomach had not been stretched so it took months of changing volume and finding the right formula and the right schedule. Once I stopped trying to force her exactly to the dietitians schedule and did what was working for her we had an easier time. There was still vomiting, but after she turned a year old we swapped to real foods and she did amazing on it, until she got backed up in August of 2023.

This episode of dystonia was her first and because it was the first time it seemed super scary, which it was at the time, but looking back now that hospital stay and the ones in October and November were not near as bad as the stay in January of 2024. January of 2024 there was a doctor who didn't believe me when I said she was in pain and just kept saying she needed a recharge. This stay was horrible and it showed just how strong our Mighty Maia is, but I will never forget how powerless that doctor made me feel.

During that stay I found nurses, a social worker, and a group called PACT that had my back. All the other doctors we had from then on listened when I spoke and I became even more head strong when it came to her care. I was not going to let another doctor take my knowledge of my daughter away from me. I was going to fight for what I knew she needed and I wasn't ever going to second guess myself when it came to her signals and what she seemed to be telling me.

So for your child or children don't let anyone bully you into thinking your wrong, no matter how smart they think they are or may be. We as parents, especially moms in most cases, know our kids better than anyone else. We have that knowledge and no one can duplicate those feelings/thoughts no matter how long they go to school.