Levels

Way back when Olivia was an infant and we realized that she wasn’t meeting her milestones the way she should have been, I knew we were still on the lucky side of the statistics. I knew even then that things could be so much worse.

Even when she was screaming for months and months and months (six to be exact) I knew that it would be okay. I remember telling people exactly that. I kept telling anyone who could hear me over the screaming that it was going to get better. Maybe I was saying it out loud to anyone who would listen because I needed to hear it myself, even if I was hearing my own voice say the words.

And it did get better. Her doctor finally believed me that she was in pain and we started her on Zantac and two months later, she stopped crying and the projectile vomiting stopped. She started eating better, she started growing more and things got better.

I knew then that we were so very lucky.

I have a cousin who had a daughter who is a year and ten days older than Olivia. Before S was born, her mom knew there were problems. At her 17 week ultrasound, they saw that S had hydrocephalus. At her 22 week ultrasound, they found that S had problems with her heart.

It was decided that even the hospitals in Fort Wayne weren’t equipped to help S at birth so a c-section was scheduled to be performed in Indianapolis so that S could be rushed directly to Riley Hospital for Children right after birth. Her mom knew, even before S was born, that she was having a child who would have special needs.

By the time O was born, I’d seen S’s mom deal with three surgeries, a feeding tube, a stint, a colostomy bag, and a plethora of other issues that would cause anyone not trained in the medical field to shudder. H was and still is amazing. She basically had a two month old child for over a year, getting up every three hours around the clock to ensure her child’s needs were being met.

So a little screaming from Olivia? I could take it. I’d seen a beloved cousin take that and more for so much longer. And I knew it was going to get better.

I’ve formed some amazing friendships through the special needs community. I’ve found some seriously inspiring parents via Facebook and even right down the street. I’ve met some amazing teachers who inspire me to be a better parent and advocate for my kids.

But there are levels of special and even in this community sometimes I feel guilty even saying that Olivia has special needs. She can walk on her own, she can eat on her own, she can go to the bathroom on her own (at least to pee, we’re working on that other, messier function.) She actually sleeps fairly well these days, knock on wood. She can go up and down stairs by herself, though she’d prefer that I carry her, thank you very much. But I think that’s because she’s the baaaaybeeee more than anything.

We deal with IEP meetings and a few doctor appointments every year or so but nothing compared to some of my friends, who have to fight schools and doctors and therapists for every single thing their children need.

I just have to remind myself every so often how very lucky we are. Things got better. And they continue to do so. And for that, I’m so grateful and feel just a little guilty.