The Norm

Things are pretty normal around here. As normal as it gets for a house with 4 kids. People everywhere, things everywhere, noise everywhere, all hinged together by a summer “routine”.

Post surgery I never thought we would hit this sweet spot. Whether Maggie had colic, or the negative effects of anesthesia, it has disappeared. Poof, gone. It was a special kind of hell. I don’t say that flippantly. You feel disconnected, unsettled and incapable of consoling another. It was hell. It’s over, thank God.

She is peaceful. Maggie has what Juan calls, “happy time”. Three or four times a day she lays by herself and just coos and talks to whatever. She is looking in our eyes, smiling, she is holding toys in her little hands. She sucks on her fingers, pulls out her chuppie (aka pacifier). She loves her “mankies”. It is a word created by one year old Juan, a combination of “my” and “blankie”. She will literally breathe a sigh of relief when we put one in her arms. This is the norm.

There are no day to day worries regarding the symptoms of Apert. I am not concerned over her breathing, her skull, her eating, her sight. The only regular thing we are currently navigating is how to have a family of six and there are a host of people who are making that transition the most beautiful thing ever.

We are surrounded by the most amazing people. I can’t even put into words how much love and care we have been shown. I have been literally rendered speechless by people’s generosity. I barely manage to utter the words, “Thank you” because I still haven’t figured out how to put into words the swell of my heart and the relaxing of my shoulders. I told Carlos yesterday, “I feel like I am in the school of love.” We have been loved fearlessly, with great attention and detail, with simple words and gestures, with food, with smiles, with “just checking in” and I am learning. There is no wrong way to give, to pour out oneself. When love comes from the deepest part of the heart, that part that isn’t tied to selfish wants and desires, that part that makes a person a little bit uncomfortable, it heals, it mends, it comforts the other. Thank you a million times over for showering Maggie, Carlos and me, and the kids with love.

So what is next?

We are meeting with the plastic surgeon on our team who will be working on Maggie’s hands. There is discussion right now of how many times Maggie will have to go in for surgery, she needs two procedures on each hand in order to have 10 fingers. The first surgery would release the pointer and pinky finger and the second surgery releases the middle two. Some physicians like to do both hands at the same time, and others like to do one hand at a time.

Maggie is also being evaluated for occupational therapy and physical therapy. In all fairness to Apert and Maggie, all of our kids have usually been late on the physical milestones and early on the language ones (I don’t know where that comes from!?!). That being said, Maggie can’t keep her head up and the helmet weight isn’t helping the situation. I am pretty sure she also has another little random issue that can come with Apert, malformed shoulder joints. She doesn’t lift her arms over her head, or higher than her shoulders. We aren’t big on roller coasters, and I don’t make my kids raise their hands for homeschooling but I’m pretty sure this is going to impact crawling and other daily physical abilities that I take for granted.

So, on we go. To learn something new, to appreciate all the good things, rejoice at the victories and remain steadfast in the valleys.