It’s complicated

Things are still going pretty well. Claire’s been good. We found the sinus infection and got the antibiotics going before the fever and seizures began their vicious cycle. I’ve been taking care of myself a bit better, making time to paint and take pictures and space out at the beach. I’ve been a better mom, choosing to let stuff go and to be present and laugh and play with the girls. I’ve had friends holding fundraisers for the Rettland Foundation and seen strangers step up to help out families, it is awe inspiring and I can’t believe I get to see this beautiful side of life. There is so much good. It is easy to sit rattle off a long list of what I am grateful for.


Then people ask questions. How are you? How’s it going? I feel torn and don’t know how to answer. My honest attempt comes out, “It’s complicated.” We aren’t in crisis but that brings its own challenges. When the heat turns down the adrenaline subsides and I can’t stay awake to save my life, ironic, right? Jared and I drift apart as we float in the direction of normal. Still, life is far from normal. I’m still spoon feeding our 8 year old. She still screams in anguish that she can’t articulate what she wants, which is pretty much just not to have Rett Syndrome. Even when we make the most of it it is still very hard. Even the good rett days are harder than a lot of people rough days. Does it really make it alright just because I’m used to it? At the end of the day I just have to choose that it is enough, that this is what we have, this is where we are and that’s a lot easier to do when things are going in the right direction. So yes, it’s complicated, we are good, not because its all better but because that is the decision we made.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s