In the Beginning – One Year Later
One Year Update from my sister Becca:
I was having a very pregnant moment (she really was pregnant)the other day when I was tranporting Liam and Aidan from mom’s house to dad’s house. I looked in the rear-view mirror at the boys all strapped into their car seats and they were both sleeping soundly. I called Heather and Garreth, who were out of town to just let them know that their boys were doing well. (Yes, we skipped town. I can’t remember where we went but I know it was fabulous because we were away from our kids and drama.) The minute the answering machine went on I started to sob at how lucky I was to have such precious children in my life. Taking in the beauty of BooBoo (Liam) and my Chubby Bunny (Aidan), I was overwhelmed with emotions and how I am the luckiest Aunty BooBoo in the world. I eventually calmed down and for the rest of the ride I reflected on the events of the past year. It has been quite a year.
While Aidan was here I took some really cute pictures of him and thought it was time to give everyone an update, not to mention my Chubby Bunny has turned 1 year old. So I asked Heather to share some of her thoughts and here they are…
I started this update with the “Welcome to Holland” essay by Emily Pearl Kingsley:
It really does seem like a lifetime ago and yet this lifetime seems like it has just begun. Garreth is gracefully adjusting to life in Holland while I’m busy telling off the pilot to get me back to Italy. Aidan is completely off of O2 as of Sept and is primarily eating everything from a bottle. He still has a g-tube, just in case,for an ounce here and there.
So what does Aidan do? He loves to laugh at his Daddy from whom he is cloned. He scratches his head when he’s tired. He holds his head up quite well now. (Though not a medical issue, Aidan had a really big head which was super hard to hold up since his muscles weren’t strong. This was a big accomplishment.) He reaches for toys and looks all around his world. Aidan loves mouth play – kisses, toothbrushes, and lemon yogurt. He also loves to bounce. Most of all, Aidan loves to be held. Really, I can’t put him down.
What doesn’t Aidan do? He doesn’t sit up or roll around and he especially hates being on his tummy. He also doesn’t take enough solids by mouth to count for anything. It’s mostly for play. He also doesn’t babble much yet.
What does Aidan require? He needs to be swaddled when he sleeps. He loves to have his head scratched. He has ugly glasses that look cute on him but don’t really do anything, according to his op doc. He has little colorful foot braces and a stander that basically holds him in a standing position with a tray to play with toys.(See, Karen, I must have used it if I mentioned it. I was psyched to get rid of that huge and cumbersome piece of equipment.) Aidan is also getting a super fancy seating system. It’s not a wheelchair, it’s really an entire system.
It was brought to my attention that because of all he requires, it really feels like a job and can easily steal the joy of just watching him grow. We don’t have the luxury of watching, Aidan really needs to work.
This year has been a crazy roller-coaster for us. We take tremendous joy in Aidan’s improvements. We’re also really thankful that he gets such close medical attention from some super docs. The primary players are a geneticist who knows everything, a great developmental doc, and a neurologist. Also on board are an ophthalmologist and orthopedist. And the three therapists that are in our home each twice a week are really wonderful with Aidan and supportive of me. They keep me going at this point because they teach me lots about Aidan and keep him moving in the right direction.
Garreth and I have such different approaches to these circumstances and so little energy for each other. It’s a struggle we are keenly aware of. Aidan still has no real diagnosis other than Congenital Hypontonia which is doctor language for we don’t know why the heck he’s so weak but we think he’ll get stronger. He’s definitely Developmentally Delayed and they’ve thrown in Failure to Thrive, which I choose to ignore. It’s no longer about the year we’ve survived but what lies ahead, which is such a mystery but certainly unlike what we expected.
Back in Italy, Liam has grown a lot this year. When told that his cousin was getting tubes put in her ear to help her earaches, Liam wisely said, “Tubes aren’t for ears, they’re for feeding.” That is just his world. He’s very helpful with Aidan and actually knows a great deal about his care. Other than that he mostly ignores Aidan, which is fine. One time when he decided Aidan would be fun to play with, Liam piled pillows on top of Aidan and climbed on them claiming that Aidan was an airplane.
Liam recently transitioned to a big boy bed which I wasn’t going to do until he went to college. The first day was a total disaster but it’s been three days now that he has not come out of his bed once and if writing this in an email jinxes me I will run away. He even woke up at 8:30 Saturday morning and just read books. His other big accomplishment is that he is basically more or less potty trained. He wear undies and what impresses most people is that he wipes the seat when he is done. I’m thinking of loaning him out to train husbands around the globe. I really can’t take credit for that. A friend of mine trained him. Liam is oh so verbal! And he does love to read.
So that’s us for now. I still have Aidan’s birth announcements addressed and ready to go somewhere. It’s only through struggles that we can truly see our blessings.
*This has been the story of Aidan’s beginning. It started here. My present day thoughts are in bold. Thank-you for listening. Now back to your regularly scheduled program.