The paint color on Avery’s bedroom walls got me thinking. We wanted something neutral because we didn’t know “boy” or “girl”. We chose green, something like the inside of a perfectly ripe avocado. Delicious. It’s a little brighter than that but we didn’t want to do it over so it stayed. Thinking of that took me back. Back to the trip to Home Depot to pick it out. Back to painting the room with Red even though I wasn’t supposed to be painting while pregnant. Back to directing him and my mother-in-law as they put together the crib. Back to being ignorant about what it meant to be a parent.
I wish it was as easy as paint colors and cute bedding and the crib from a fancy kid’s store. I wish a lot of things.
But that is not what this is about. This is about how we deal. How we cope. How we do this: how we handle this life with Rett Syndrome that is now our own.
The quick answer? No idea. I don’t really know. We just DO. But that would be a pretty boring post. So I have been thinking of a longer answer to that question that is asked of us repeatedly. “How do you do it?”
A lot of people want to tell me that I am so strong and brave and they couldn’t do what I do. And I always tell them, “Yes you could and you would because it’s your kid.” What am I supposed to do, curl up in the fetal position and cry instead of getting out of bed? (Don’t get me wrong, I have done my fair share of that.) You just have to get up every day and fight.
I have always been the type of person that wants to figure things out on my own and then ask for help-maybe. I don’t know what it is but even in the grocery store while looking for ant traps I will wander the store three times or more before finally acquiescing and tracking someone down to help me. I could walk into a clothing store fully knowing what I want and if the salesperson asks “Can I help you find anything?” I’ll say “no thanks I’m just looking”-liar. So it was no different when we received Avery’s diagnosis almost 9 months ago that I immersed myself in all things Rett. I joined sites and emailed parents and ordered books. I had to get the basics before I could go out and really ask for HELP. I’m getting better at this, even though the ant trap story is true and very recent.
With the diagnosis came a lot of support. It came from all over: from my own home to another Rett mom all the way in Indiana. It came from the Director of Family Support at the International Rett Syndrome Foundation who happens to live about 15 minutes away. It came from a parent of a young woman with Rett whose case I had managed in my previous life as a service coordinator. The support came from all over and I had to take it in. I had to accept it and ask questions and let myself be vulnerable. I felt such love in those first few weeks. Such warmth and lift; and a realization that we really mattered to other people. This has only gotten stronger.
The parents I have met that have blazed the Rett trail before us have been such gifts to us. Shoulders to cry on. New friends to laugh with. Our bonds are unbreakable even before we meet in person. We are connected and always will be. It’s a difficult thing to describe, but I know I couldn’t do any of this without each and every one of them.
I’m a big fan of email vs. telephone for most any communication and it was via email that we notified our friends and far away family about Avery. I’ll never forget the responses we got and I was so thankful that email existed because I’m not sure how I would have handled all the calls that would have flooded the line. I also realized something even more important: this was not the worst thing that could have happened to Avery or to us. I remember thinking “Wait! She didn’t DIE! She just has Rett syndrome!” as I read some of the responses we got. Everyone offered to do what they could to help – bring food, watch the kids, get groceries – and that is when it clicked: it could be a lot worse. Avery is a bubbly, happy, giggle monster who has a zest for life. She isn’t ill at the moment or requiring special medical care to keep her comfortable. We can do this!
The night we got the news, I called my husband to let him know. He was almost home from work and his response was pure shock. Denial. No way, it can’t be. “It is,” I told him. We embraced as soon as he walked in the door and we both cried. I told him it was going to be ok. We can do this, together. We had already had many conversations about our divorce chances being something like 80%, that this kind of thing can really drive a wedge in a relationship. We had vowed to never let that happen – we needed to be a united front and help each other so that we could help Avery. As soon as he walked in that night and we hugged, I knew it really would be ok. We were in this together. He was going to have to hold me up and I would do the same. Our marriage isn’t perfect – is anyone’s? But I can say that it has only gotten better since diagnosis. It honestly has. My husband has been such an amazing support to me even if he doesn’t know it. I’m beyond grateful to be walking this road hand-in-hand with him.
Part of me feels like I should always be “on”, always in “rett mode”, thinking of PT, OT, ST, ABA and IEPs. I quickly realized that, while all necessary, it’s easy to get bogged down in all the “stuff” that comes along with a disability. There is a lot to learn, to do, to think about, to plan. But, not at the expense of my sanity. I recently told someone I think I might be missing the I-feel-guilty-when-I-leave-my-kids part of my brain. Because I rarely feel that way. Maybe I should feel guilty for that?Probably. I go to the gym 4-5 days a week and it’s my saving grace. I have monthly girls’ nights, book clubs and random dinners with friends. I indulge in pedicures, hair appointments and as many date nights as possible. We take weekend trips as much as our wallets will allow with friends or just the two of us. It is so important to “recharge”. We have to take care of ourselves if we are going to have any chance of taking care of the kids.
My blog (and my fellow blogging Rett mamas) has been an amazing support system. Being able to put my feelings out there – to write them down – helps me process and makes it easier to accept the love and support I am receiving from all over. It keeps me from having to tell the same story over and over. It has connected me to other moms all over the world – no seriously – the world. It has connected me to me and this life and my feelings about it good and bad. I often get comments referring to my blog such as “you are so candid” or “I love how honest you are” and it feels good. I think it’s a difficult thing to be a parent and be honest about your struggles, let alone a parent of a child with a disability.I’m not doing a newly diagnosed parent any favors by sugar coating it. I remember hearing new moms talk about the experience of bringing their new babies home and I rarely heard the words scared, overwhelmed, depressed, anxious, or panicked. All you ever hear is that it’s amazing, and joyful and full of so much love and beauty. And it wasn’t like that for me and I have always felt it wasn’t totally like that for most moms either. It still isn’t. Not totally. Of course I do have a front row seat to two of the most amazing miracles on a daily basis. Because we have been dealt this brutal blow, I get to really truly see my kids progress no matter how small. And that is PRECIOUS.
So, I’m not sure that I have answered my question any better than “I don’t know” but I do know that it isn’t just one thing. It is a lot of little things that end up being really amazing when they all come crashing together.Kind of like a smoothie. Or guacamole. Delicious.