I exhale with a sign of relief as I count up the days….101. 101 days since Riley has been home from the hospital and thriving. As it gets darker earlier, the rain rolls back in and the leaves change beautiful colors, our happy summer has come to an end. And I’m happy to say that we are starting a new season at home, rather than in the hospital. And as that new season starts, filled with comfy sweaters, changing diapers in the back of the car trying to avoid the rain, hot apple cider, school in full swing, also comes new fears. Fears of what comes next. It’s now officially cold season, we’ve gotten our flu shots and anyone who wishes to be near Riley will be as well. But unfortunately it doesn’t create a force-shield against germs, bugs and infections. A cold that could be annoying to you and me for a few days, more than likely puts Riley in the PICU with pneumonia, and possibly on a vent. The next time this happens, we have no idea if it will be the last.
We know that we can do everything in our power as parents to protect our fragile little child, but it only extends so far. We’re not going to live our lives in a bubble, have Riley never leave the house, not allow public interaction. Yes, there is a lot we will avoid, but even knowing we will be taking chances here and there, isn’t going to stop us from giving him the experiences and life he deserves. Like the fact that he’s going to get on probably one of the most germ-iest things in the world in a matter of 25 days, an airplane. Yes, we will take every precaution, but in order to get to “Mickey’s house” in Florida, it’s kind of the best option. And as we know that we live our lives day to day and week to week. Like right now our goal is keeping him healthy from whatever bug is going around to make it down south, this weekend, to see Nana and Papa, and to see Auntie Staci, Uncle Martin, best buddy Zeke and miss Maybe Baby (Mabel). But beyond that, we are planning Riley’s Make-A-Wish adventure to Disney World at the end of the month, for a 7 day/6-night trip to go to “Mickey’s house”, see all the animals and swim in the ocean (or gulf!).
Now, the last time we flew with Riley, and it was our first with him, seemed like such a pain in the ass at the time. Now, he himself did amazing. Wasn’t fussy, didn’t have any medical issues (on the planes anyway), behaved very well. Lugging a car seat through an airport and on an airplane is probably one of the hardest things about traveling with children. But it’s also one of the most normal! Thankfully this time we have a special bag to wheel it in, and we should be the first, if not one of, the first to board and get settled. Now the only other “extra special” item that I can think of that we took with us last time beyond normal kid stuff, was his feeding pump and special formula, that I literally almost yelled at a TSA agent in Raleigh to not open them. We will have that with us again this time, formula is a bit different, but still a liquid that cannot be opened. But we will also have the following extras with us, and all as carry-ons as well, somehow. BiPAP machine & tubing, suction machine, portable oxygen concentrator (which I have to get a doctor signed form for), oximeter, cough assist, and feeding pump. You think you have it hard traveling with your kid?! I hope that he will not need any of this while on the airplane, but we certainly need it with and near us just in case! Also the last time we did major travel with him like this, he was a champ putting up with it, but it did wear on him pretty good, and that’s when he had his first apneic seizure, and the only time we’ve ever had to call 911. His seizures are very well under control, but any stress on his body brings the threshold for everything down, so we know and will have to keep in mind to take things easy, go at his pace, and to no way overdue anything. We have main experiences that we will make happen, beyond that, it’s just time as a family to enjoy together, and with his Nana too!
I decided to look through a journal today, that I was given while Riley was inpatient this last spring. I’ve always loved writing, and it’s like therapy for me. I almost wish I had my old diaries and journals from when I was younger, just to read back through, roll my eyes and wonder why I was so weird! Not that anything has changed! I decided to use this journal to make a book of ‘Memories of Motherhood’. Things good or bad that will not only help me not forget thing about having Riley that gave us joy, upset us, was hilarious, or just happened good or bad. I haven’t looked at this since we were discharged in June, 101 days later I’m opening and reading through things I wrote down, almost 20 pages worth. Not even half the book, and I remember telling myself that my goal was to completely fill this book, by the time that I have to say my final goodbye to my little monkey, and now that time has passed, he’s been so well, and we start this new season, I think it’s time I start this back up again. Some of what I wrote makes me smile, some I laugh, others I cry. But I never want to forget or not experience (certain) things with or about him. I’d like to share a few I thought you guys may like:
· The first time you stood. In a stander at the Encompass clinic, sizing you for your own.
· The first time you walked, in the pool. Floaty around your head, you loved it, smiled walking to me. And made me cry.
· Your first big blow out in the car on the way up to Sequim for the 4th of July, at 12 days old. Me yelling for Daddy to help because I couldn’t figure out how to clean it up without getting it all over the car. (Now Mommy is a pro!)
· The first time Sadie laid still and let you pet her, and then kissed your face.
· The complete joy on your face while watching the octopus at the Seattle Aquarium (King Kong) swim around. Of course a stuffed octopus was purchased after that!
· Sneezing prunes all over your high chair and thinking it was hilarious. All downhill from there on not sneezing out your food and laughing.
· The feel of utter terror when you had a massive apneic seizure on the peds floor at Swedish. Having a code called, the room fill with people & a crash cart, watching, crying and helpless.
· Learning to play catch with your koose ball in therapy.
· “Oh, Rywee be there mama?”
· Your WTF face you made at Zeke when he was making his dinosaur noises at our house (when you guys were about 6months).
· Going “boom” on Mommy & Daddy’s big boy bed.
· The way you grab on our fingers so tightly now, compared to anything else and won’t let go.
· The amount of stuffed animals (buddies) you have!!
Now, if you know me at all, I’m a planner. I’m an organizer. I’m not patient (I have gotten better, just not great). Trying to live our lives in the such “day-to-day” mentality, is VERY hard. Some days and weeks, you kind of just get into the groove of things, the boy is doing well, and things just flow. Other times, like with planning his wish trip and coming into the holidays and cold season. I like to KNOW what’s going to happen and when. I can’t plan how the rest of my child’s life is going to go, nor do I want to. But trying not focus on how that is going to play out, let alone end (and when), is getting harder and harder. We were so blessed to go through the hell, sitting on the edge of the cliff this spring, to being able to take steps back and get better and come home. I still remember picking Riley up for the first time in months, by myself, and getting to hug him. Which is a much different experience than having multiple nurses try and move him into my lap to snuggle. That independence and mommy/Riley moment, I’ll never forget that feeling of being so thankful.
But knowing that feeling will end someday, tears you apart inside. I don’t know which is worse, even though I’ve experienced both. Knowing your loved one is going to die and getting time together and being able to say goodbye. Verses having it be sudden and unexpected. I don’t know how else to explain it other than the knowing version, is like grieving while your child is still here, every day. My child is still alive, smiling, has a big toddler attitude, and yet every day I have to find a way to deal with the fact that one day he won’t be. One day I won’t get to hold him in my arms anymore and see his smile. We’re told that this could be anytime between tomorrow, and a year or two from now. I certainly hope and pray for the latter, but I also want and need to be able to accept, deal, and live like it won’t be. I can’t even imagine what our lives will look like five years from now. And five years ago when Chris and I married, I had this picture of what that could and would be. But I will never regret the surprise and joy of having Riley be in and a part of our lives.
