Botox Update

How is the Botox working? What did the Botox do? How are things going since the injections? I apologize for the delay in reporting about how the Botox is going since it was done…summer has hit the ground running for us!

The Botox seems to be doing its job and Alistair seems to be slowly regaining his function. It isn’t an overnight process by any means and even as I type this he is sitting next to me on the plane to Boston doing his iPad with his right elbow firmly jabbed into my arm or side as he can’t sit with his arm all the way straight and relaxed.  But nevertheless, he has begun to use his right hand again. He needs some prodding as he has become accustomed to using his left hand. We have to remind him he has two hands…use it or lose it! He has held glasses in his right hand had taken drinks, he is holding his fork with his right hand to eat, he has become less dependent on us to help him with Legos because he can now hold them with his right while he builds with his left (eventually we would like to see that reversed!) and yesterday he willing colored at lunch at the restaurant. He asked Seth to make some outlines of spots on a cow that he could color in. It was a bit of work and he had to take some breaks to rest, but he did it and was pretty darn proud of himself. His therapists are over the moon at the changes and so glad to see him moving back in the right direction…as are we!

As I mentioned above, we are heading out of town. Our trip to Chelan last month was a blast. The kids had so much fun playing in the pool for 5 days and we enjoyed just relaxing and not having a schedule. This trip, we are heading to the East Coast for 3 weeks. When we land tonight, Judy will be picking us up and we will drive 2 hours north to Meredith, NH which is on the shores of Lake Winnipesaukee. We will stay at a family cottage on the lake through Sunday where we will swim, boat and relax. Then we will pack up and drive about 3-4 hours south to Cape Cod where David and Judy have rented a house for us, them and Ethan & Jen and kids to stay for up to 2 weeks. We decided to do the whole 2 weeks. This is our summer re-do and we are re-doing it right! We will be staying mid-Cape in a town called Brewster, MA (we stayed there 6 years ago). There is a great swimming beach with great sand castle building sand nearby and a trail similar to the Burke-Gilman trail for walking and running. We are thinking about taking the kids into Boston for a day or two…they spent about 6 hours there 2 or 3 years ago, but otherwise haven’t been. We don’t have a lot nailed down right now, we will just go with it…it’s vacation, right?

As an aside, I do have to say Seth and I are having a hard time right now with it being a year out. We both find ourselves thinking about the date and reflecting on what was going on a year ago. Guilt, sadness and anger boil up occasionally and rear its ugly head in the worst places. I don’t remember things as vividly, but I definitely remember the emotions. I have a specific event that pops up in my head and plays and it makes my heart cry. It was the first night I spent the night in the ICU with Alistair after he focused so hard to utter the words, “I want to go with you home.” Everyone was telling him good night and talking about going home and seeing him in the morning (home, of course, meaning the rental house). This was the first day he seemed to be tracking and communicating a little, and it was also the first day he started tremoring, which was scary for all of us! But the way he took my hand, pressed it against his face and looked at me while saying that phrase haunts me and creates a wave a guilt that then washes over me. I don’t think I will ever forget it.

But focusing on now, things are looking up, and that is good. 

Bittersweet Anniversary

Today marks a year since Alistair's surgery. One year ago today we had our worst day ever. It began as a day full of hope as we looked ahead to how having this surgery would change him for the better...more energy, more stamina, and a heart that worked the way it was supposed to. We had a lighthearted morning, trying to keep Alistair from getting too nervous and even enjoyed Alistair high on Versed batting at triangles in the air and making sure we could see the TV that was mounted high-up in the corner of the room. He went back alone, he wanted it that way and even though we both longed to accompany him for as far as we could, we wanted to respect his decision. Hours went by as we paced and checked emails and texts, kept busy with puzzles and books and found things to snack on. The nurse finally came to get us as the surgeon was ready to talk with us on how everything went. He told us things went great, the fix was a success and they were just monitoring his pulse and getting ready to close him and bring him up to the ICU. We were elated and relieved. Phew, we were on the road to recovery.

After lunch all hell broke out and I honestly cannot remember much beyond the tiny room they put us in to talk with us about what had happened. The faces of the people who came in were long and expressionless. They spoke to us and explained things and you could tell they couldn't even believe what they were telling us. Their words were confused and guarded, it was obvious that what they were saying was unrehearsed and they were doing a quick mental check to use their patient and family care training as they tried to put words together. There was no plan, they were coming up with it as they spoke to us. The word 'if' kept being used and I was getting confused and thought I wasn't reading the situation correctly. I finally put my hand up and with all the strength I could muster to not breakdown asked, "is he going to die?" The doctor, who to this point was really trying hard to be calm and collected and explain things to us in a not panicked manner, looked at me with a blank stare for a second and said "we are not thinking that way right now." Then I said, "can you please stop saying 'if' and replace it with the word 'when'? It is more hopeful, 'if' sounds ominous and hopeless." He smiled and agreed that 'when' was better.

The rest of the day was a blur. I don't think we fully understood the extent of everything until days later. The hope we had for his surgery quickly faded away to sadness, confusion and anger. Eventually the hope came back, but it is different. We hope for a full recovery, we hope for a happy, healthy son, we hope for normalcy, we hope for freedom from therapists, we hope for Alistair to play sports again. But mosty we hope for this entire experience to be behind us and out of our heads. 

We recently listened to an interview with Norman Lear, who is a TV producer and writer, known for among others things "All in the Family" and "Sanford and Son." He spoke about his philosphy on life and the two words he lives by, "Over" and "Next." When something is over, it is OVER (you don't dwell on it) and you look forward to what is NEXT. The sweet spot is a hammock hanging in the middle where you live in the moment between over and next. I found this is be a very freeing and intriguing philosophy and find myself thinking about it a lot. This past year is OVER, we don't need to dwell on what if's, why's and how's. We look forward to what is coming next and for the moment we focus on today...our happy son who spent the day swimming with his sister and cousins in Hood Canal, had a picnic lunch of fried chicken, potato salad and watermelon on the beach with his family and got misty-eyed tonight because even though he was happy to have us back home again, he missed his Nana and Papa he just saw 4 hours earlier because he had so much fun. That is what is important and that is what is NEXT.