It’s been a few weeks since I wrote an update on June. To be honest, it’s because I’ve been having a tough time. When I decided to write this blog I wanted it to be a way to update our family and friends about June, but I also wanted to use it as an outlet to process the pain that comes with caring for a baby with special needs. I didn’t want to use the blog to vent my frustrations. I wanted everything I posted to be written with intention and meaning because after all I’m doing it to help heal.
All that said, it took a lot of restraint to not use the blog as a place to release my emotions. I can’t tell you how many times I sat down to write with tears in my eyes about my anger, sadness, and fear. My plan was to post everything I was feeling so I could get my emotions out for the world to see because I couldn’t handle them inside me anymore. I wanted them to be someone else’s problem. Thankfully, I’ve moved beyond that stage of grief for the time being.
Nothing in particular happened to set off a spiral of negative emotions. In fact, from a big picture perspective, it’s actually been a good few weeks – the diet is going well and June is still making progress developmentally. I think it was a combination of small situations that fed off the other that led me to feel down. First, we have seen a lot of improvement in June’s development since starting the diet, but as time’s gone on, the progress has slowed. It hasn’t stopped, but it isn’t as drastic as it was in the beginning. While I think that is normal and to be expected, I felt discouraged. I wanted it all to happen as quickly as it did initially.
Next, June had another EEG which showed she is still having seizures. I knew it was going to show that because I could still see her having them, but I was hoping for some improvement which the EEG did not show. Now, it is still too early to make any assumptions, especially since June was not in optimal levels of Ketosis when she had the EEG, but I still felt disappointed and scared.
On top of that, I was surprised at how difficult Halloween was for me. When I saw all these kids running around in their costumes all I could think was, ‘Is that going to be June? Is she ever going to run up to our neighbor’s door and say “trick or treat?” And the truth is, we don’t know. That is a hard pill to swallow, especially for me. Uncertainty terrifies me, but unfortunately that is my world…. that is all of our worlds, actually. I just seem to be more aware of how uncertain life is than I did before all of this happened and sometimes I want to go back to being oblivious to how vulnerable we all are.
Last, as June gets older and the developmental milestones become more apparent in babies her age, it is difficult to see that she is not reaching them. I’m struggling with accepting that June is following her own timeline. In yoga we are taught to focus on our mat. This just means to accept where we are in our practice without judgment or criticism. So, just because the person next to me has loose hips and can do double pigeon while saying how good it feels doesn’t make her better than I am because I can’t even do half pigeon without wanting to cry. I am trying so hard to take that lesson in yoga and apply it to my life with June and her development, but it is challenging. I can’t help but get sad when I see babies June’s age or younger doing things that she can’t do yet. It just doesn’t seem to be clicking for her yet and I am struggling with just being okay with where she is right now because the fact of the matter is I don’t have much control over that anyway. I can provide June with optimal situations to thrive through things like occupational therapy, audiology, and speech therapy, but that is all I have control over and that can make a momma feel powerless. So, all of this combined is why I’ve had a tough few weeks.
But I want to end on a positive note with some good news to report. June had a behavioral hearing test this week, and it showed she is responding to noise 15-20 decibels softer than she did on her previous test. At home, we’ve noticed June reacting more to sound since she started the diet, but it is encouraging to see that reflected on a test. It’s amazing to watch her hear things for the first time. Last week she was looking at herself in the mirror and she squealed, then she paused, looked at the baby in the mirror, and then started to cry because she scared herself. It was the most precious thing I’ve ever seen. I wish I had it on video! Since then, she’s warmed up to the baby in the mirror and now smiles back at her when she squeals.
Yesterday in an interview on “Katie” Michael J. Fox said, “my happiness grows in direct proportion of my acceptance and inverse proportion of my expectations.” That resonated with me for our situation with June. We had so many expectations and none of them included what we are dealing with now. In my wildest dreams I never thought I’d spend most of my days of June’s first year in doctors' offices and hospitals. I thought I’d be in playgroups. But the more I resist accepting our situation, I think the unhappier I will be. Acceptance won’t happen overnight but maybe I can slowly release my grip on my expectations.
