Day 3

We are home!

Happy, healthy, and home.

Bye Bye trach! Adios!

Day 2

Harrison had a great first night post-op, aka post-trach! He has been so happy all day, and I have taken lots of pictures, including one of the back of his neck, which will always be my favorite spot, I just keep staring at it and running my finger across it...it's so beautiful! We left the ICU and moved to a regular floor today. He got another visit from his babysitter Maddy, who came by yesterday too, and he loved that. He also got a visit from one of his old ICP buddies Ethan, who is now a surgical nurse and engaged to his other favorite ICP nurse Sarah...guess he has some competition! We love them both and are so excited for them! And another visitor, my friend Beth who is one of his pseudo-aunties. He is so loved and quite popular. We have gotten the most amazing support from our friends and family...his entire community of people in his life are all celebrating with us, and it feels incredible. We are blessed. 

I felt a little guilty today, this morning, being on the ICU and feeling so happy, when the other kids there are so sick. One of Harrison's friends from his play group program at Perkins School is also here, on the ICU. He's pretty sick. I talked with his mom for a few minutes, and, bless her, she is so genuinely excited for us, despite the very difficult time they are in right now. We wish that boy a very speedy recovery and lots of good progress. 

Every time I look at Harrison I still can't believe it...I feel like we are finally like everyone else. Now I just have a regular kid with delays (and a gtube!). That trach being gone makes such a difference, even though it was fairly inconspicuous and he barely used it. Yesterday morning as we drove into Boston through the pouring rain John pointed out that rain is the sign of a new beginning. He's right. I feel like the next chapter of our lives has begun, and I feel so much more hopeful for Harrison and all of us. His progress is going to soar, I can feel it. I realized something today. I am so ecstatic, and our friends and family are all so full of joy and pride and love for us, and I realized, I feel like I gave birth yesterday! That's what it feels like. Four years later...ahhh, so this is how it is. Pretty cool. Let's look forward to many good and wonderful things.

Oasis

How do I begin? This has been one of the very best, most settling days of my life. We have literally brought closure to a very intense 44 months...today Harrison's trach was removed! We are still processing it. I am still in disbelief...but there it is, that little dressing over the hole, which will hopefully close on its own within days. And Harrison is happy, and relaxed, and relieved, as are we. We scheduled this day about a month ago, and we did not tell anyone...too much disappointment last Fall, I couldn't jinx it (my Jewish superstitions take over again). We arrived at the hospital at 6am this morning. He was in the OR by 7:30 for a bronchoscopy and laryngoscopy (in other words, a little looksy into his airways) while under anesthesia, and by the time I went to the ladies room and John and I played a few rounds of Words, the doc was finished and filling us in. Everything looked great, everyone's happy, let's get to the ICU and when he wakes up we'll take out the trach. And that's what happened. Simple as that. Uneventful, just like we like it. He has been smiling, cheerful, happy all day. I keep staring at his throat, it's so surreal. I can't stop running my fingers across the back of his neck. He knew it was a big day. He woke up at 4:30 singing and laughing, wide awake and ready to get going! He is amazing! And everyone's excitement and enthusiasm and support has been incredible! He is getting bigger, stronger, healthier, making huge developmental progress...it's all good!

Addendum...

Wow! My friends' comments on the post below are amazing, and make me feel really good- good about myself, and warm toward the special people I have had the privilege of getting to know. Thank you.

After I wrote that, I was thinking that by no means do I want to discount what most parents do for their children, and I know every single one feels like they must master a juggling act, whether for one child or, bless you, 2, or 3, or 4 (you know who you are!) All of us work hard, we just have different jobs. I don't assume I have it harder than anyone else, but I do definitely have different experiences and different fears and waaaay more medical knowledge than I care to. And that Master's degree I got in Child Development...that is out the window, because I seriously have lost all track of what's typical! Oh well.

I cannot imagine taking care of more than one (although I can't forget about our dogs, seriously sometimes they are more work than Harrison) and I don't know how you all do it! You all impress me every day, and I get a kick out of watching my friends with their kids, typical and otherwise. I enjoy it so much, and I think it makes me a better parent when I break out of my own little bubble. Again, thank you.

A Day in the Life

The article I posted by Maria Lin really hit home, and I still think about it every day. What a relief, like a weight off of my shoulders, to have my thoughts so eloquently put into words....I am grateful to her and feel like I am in good company with her.

The one point she made that I can't get off of my mind is the first one...I'm Tired. As she writes, it's not necessarily from lack of sleep. It's physically, from carrying around 32 pounds of love, from being hunched over to support him while he walks or stands, from constantly repositioning him so he doesn't slide out of a chair or simply topple over, from feeling like an octopus while I hold him, hold his feeding tube, pick up the drool rag that fell on the floor, and suction his trach all at once- what I am particularly proud of is my ability to suction his trach while I am at a stop light! It's feeling like we are caring for a newborn who is four years old.

Anyway, I'm not complaining at all, and I am not looking for praise- you would do the same.  Each of you has your own nonsense to deal with every day, I know (and I love hearing about it, it's a nice break from my own nonsense!) I've gotten into the rhythm of things. I am just grateful that someone could give me the courage to stop pretending it's all fun and games. 

Also, it is emotionally tiring. It's easy to celebrate the small victories inside our house...it's not so easy to see them in a classroom full of typical kids.  I really hate when I have to go to school because one of the nurses who accompanies him is not available. I lose my break, my grocery trip, my dog walk, my gym time. And I get really depressed when we go to school and he just sleeps. I know it must mean he needs it, but in my mind he is wasting precious work time, and he has a lot of catching up to do. Nothing I don't know, just a reminder I don't need. It's funny though, as soon as he opens his eyes and starts working, my whole mood changes, does a 180. When he is up, I am up. When he is down, I am down. And people thought I was easy to read BEFORE!

And when the kids get excited for him, "Look, he's standing!", "I'll help him pick a library book today!", "I brought a toy for Harrison to play with!", "Can I be Harrison's helper today?" That, truly, is amazing and wonderful and heartwarming. That seems to snap me out of my funk and brighten my day again immediately. And don't for a minute think Harrison doesn't relish that attention, especially from the little girls in his class...he's a smart cookie, and he knows it.