Wednesday, April 17, 2013

A Good Mother

I was planning to save this post for the week of Mother's Day, but recent events have caused me to rethink that plan, and change the post a bit. 

It's always nice to have others tell you that you're a good mother. My own mother tells me all the time - though she may be a little biased. Doctors tell me when we sit through constant and endless appointments. Therapists tell me when we show up for appointments week after week, year after year - even if I'm sick, even if Lydia is sick, sometimes even if Ian is sick. Even if we barley slept the night before, even if it's snowing, we show up. 

If I'm being honest, these things usually do make me feel like a good mother - "Well, I didn't get Ian to eat any fruit or vegetables today, and he smacked his sister in the face for thinking about looking at his iPad, but I drove through a snow storm on three hours of sleep to get him to his therapy appointment, so at least I've got that going for me." Being super-on-top of everything concerning Ian makes me feel a little bit better about the things I can't control - like his low weight or some of his behaviors. It makes me feel like at least I'm doing something

Last week, I watched in shock and disbelief as another special needs mom blogger that I follow unexpectedly lost her son, Gavin. They were in the midst of their daily life - at an appointment for Gavin - and he had a seizure, followed by cardiac arrest. He went into cardiac arrest twice more while in the hospital, and by Friday the doctors declared him brain dead. In the midst of all this, his mom Kate was writing eloquent and heartbreaking updates on her blog and thanking everyone for their thoughts and prayers. She posted tons of pictures of Gavin's last days in the hospital, and wrote about how happy she and her husband were that some of Gavin's organs would be going on to save lives. She made requests that we all do something kind for someone else in honor of Gavin, and that donations be made to their hospital's Child Life department in lieu of flowers. I was - and still am - in awe of her strength.

I can't read her posts or look at the pictures of Gavin without crying, and I don't even know them personally. Their story hits home on many levels for me, and I know I couldn't be that strong if I were in her shoes. 

I've hugged both my kids closer - but especially Ian - this last week. I've welled up and had to push away thoughts of him in that hospital bed. I got scared when I thought he might have a fever when he woke up crying during the night this week. I felt guilty when I got exasperated with him when he wouldn't stop saying "I want iPad" over and over and over after I'd already told him no. 

Most of all, I've reflected on how important it is to take time and appreciate my family. It's easy to get busy and overwhelmed with all of the scheduling and appointments - some days the kids go to bed and I don't even feel like I spent any time with them, even though I was with them all day. There's no way to know when our last day together might be, so it really is important to make every single one count.

Yesterday after school, we came home and had nothing important to do until dinner time. I held Ian in my arms and said a line from Adventure Time that he really likes: "How 'bout I swaddle you up like a sweet baby!" in a funny voice. He'd laugh and yell "No!" but then sign "more" for me to do it again. Lydia caught on to our fun and came over, saying "Sweet baby too!", and I snuggled them both on my lap. I felt like a good mother.

Next time we go to the store we will purchase toys and comfort items to send to the Child Life department in celebration of Gavin - a true superhero.



Wednesday, April 3, 2013

Second Opinion

This week, our family traveled to Chicago to take Ian to see another scoliosis specialist to get a second opinion on his case. We drove down Monday afternoon and checked into a hotel a few miles from the hospital. Our appointment was on Tuesday afternoon, but Tuesday also happened to be Lydia's second birthday, so we wanted to spend the part of the day that we weren't at the hospital doing something fun for her. 

Both kids enjoyed spending Tuesday morning swimming in the hotel pool. We brought along an inflatable basketball hoop, and my cousin who lives in Chicago and his son - who is only a week older than Ian - came by the hotel and swam with us. Ian loved being lifted up to dunk the ball into the hoop, and Lydia couldn't get enough of jumping off the side of the pool into our arms. It was a really great morning.

After lunch, we had a little bit of time before we had to go to the hospital, and we happened upon a little candy store. We took the kids in and Lydia had quite the time looking at all the different candies. She wanted Jaw Breakers, but I found some "baby" gummy bears that were perfect for her. She watched excitedly as I scooped some into a bag and we had it weighed. She carried the bag around for hours after that, telling us all over and over "my candy". She didn't actually eat any of them until four hours later, when we were on our way home.

Lydia with her beloved baby gummy bears.

We arrived at the hospital a little before the appointment. Inside the entrance was a piano that was playing by itself. The keys were even moving while it played, and Ian was totally enthralled by this. We had to promise he could watch the piano on the way out to get him away from it and get to his appointment!

Ian and the "magic" piano.
At the appointment, we waited forever and answered a million questions about Ian that I had already spent hours answering on the hospital forms before the appointment. We were all getting restless, besides being eager to get home, but an hour and a half after our appointment time, we finally saw the doctor. He had reviewed Ian's medical records and the x-rays I had brought with us from our usual hospital, and was of the opinion that we should not be considering surgery to correct Ian's scoliosis yet. He said Ian's curve was doing well with bracing, and we should continue along that path until Ian is between 12 and 15 years old, and then do a spinal fusion surgery to correct the scoliosis. This is a more conservative approach than we received from Ian's orthopedic surgeon back home, who recommended starting Ian on VEPTR surgeries as early as this year.  

I left the appointment a little disappointed that this doctor didn't offer us some great, new, third option that we didn't already know about. Both paths to correcting Ian's scoliosis have pros and cons. Waiting and doing spinal fusion means Ian will have to wear a plastic brace on his torso for another eight to ten years, but it is a one surgery procedure. VEPTR eliminates the need for the brace, but after the initial placement surgery Ian would need to have day surgery every 6 to 8 months to lengthen the rod. This would need to be continued until he is done with puberty, so depending on when he starts it, it could be eight to ten years of surgery for him before it is over. Wearing a plastic torso brace can be uncomfortable, inconvenient, and limiting - especially for an older child - but constant surgeries are, well, constant surgery. Neither option is a cake walk.

Bottom line, I'm glad we took the time to see this doctor and get a second opinion for Ian. We still don't know what path we will take, but now at least we can take what this doctor said back to Ian's usual ortho and discuss it with him. We want to do what's best for Ian - to get him the best outcome and give him the best quality of life possible.