As we say goodbye to the middle school years and look forward to a new milestone - high school - I can't help but to reflect back on this part of Kennedy's journey. I remember being so sick about her starting middle school...we had already lived those awful years with one child and I think we can all remember our own middle school years. Kids are mean, nasty, drama-filled...UGH. We had already dealt with a bully at elementary and I was so afraid that middle school was going to be hell for Kennedy. At orientation, the first time wearing her new ear out in public, it fell off when she turned her head toward a friend and as she stuffed it in my purse and went on her way to the events of the day, I went home and cried. I imagined it falling off constantly, her being made fun of it for it, someone pulling it off on purpose, maybe even stealing it for a mean joke. Little did I know that bullying and the social aspect of middle school was the last thing I had to worry about.
It helped that over half the kids she was entering with knew her or knew of her from elementary school. But Kennedy thrived. From Day 1. She proved me wrong and she truly shined throughout. She made new friends each year, she deepened relationships with her old friends, she stayed out of drama. I would hear kids I've never seen before greet her in the morning, bid her farewell in the afternoon, give her hugs (which I'm sure she just loved, the hugger that she is). I needed not to worry at all about her in this regard.
Nor did I need to worry about academics. Kennedy went through elementary school doing her homework without me telling her to, getting projects done on time and without help, being the model student without any help from me. Seriously, I was the parent who had no idea there was a math test or a presentation because she handled it on her own - by choice - and apparently did a damn good job at it. This continued this throughout middle school, as can be seen by her All As in 6th, 7th, and 8th Grades Award she received earlier this week. If ever there is one thing I'm thankful for in her life, it is that she is smart and doesn't struggle on this side of things. I know it could easily have been the opposite.
But good grief has the medical journey been a bitch in middle school. Sixth grade brought the flu, twice. She struggled with Type A in January/February and Type B in March/April. And Kennedy doesn't just get the flu. It comes with pneumonia and sinus infections and it lasts for weeks. Literally, weeks. She missed 20+ days of 6th grade. Seventh grade brought surgery, which we thought would be somewhat minor. Guess again. SMILE surgery stage 1 ended up being more major than we thought. And she pushed herself to go back to soon, which knocked her back a few rungs on the ladder. Then she woke up on January 1st at Disney with the flu, which knocked her out of school (and almost into the hospital) for more than 3 weeks with double pneumonia. With some other illnesses thrown in, she ended up missing 30+ days of seventh grade. Thank goodness for 504 Plans. And we won't even talk about the awful back brace that was introduced during the latter half of this year as her scoliosis was starting to destabilize again.
We were determined that 8th grade would be her year. HAHAHAHAHAHA! The universe sure set us straight, starting the first week of school. She went into it, fighting some headaches and getting extremely tired. We had just started seeing a chiropractor to improve some mobility issues and he took an x-ray the first week of school and brought Kennedy and I in to explain what we were seeing. And the bottom dropped out of my world. I didn't tell her, didn't mention a word. But I went home and cried. And then immediately sent a picture of the x-ray to her orthopedic surgeon and asked for his thoughts. He confirmed what I saw - the scoliosis had gotten soooo much worse in the past 4 months and her lung and heart were in jeopardy. Again. We were back to age 5 all over again, and that was a nightmare in and of itself. We knew to save her life, we would need to act fast. As he was not operating at that time, he sent us on to Duke. Magic was worked and we were seen right away. But the orthopedic surgeon knew that things weren't adding up and sent her on for more tests. Next came the devastating diagnosis of Chiari and Syrngomyelia, emergency brain surgery, a horrific recovery. We lost who Kennedy was for a good long while. In late January we were crushed again when we learned that the brain surgery did not help her 37% lung function, so her scoliosis was the fault instead of Chiari. So in March, came spinal fusion, nasty infection, a second clean-out surgery, IV antibiotics, and now oral for another year, which is when we'll decide if another surgery is required to remove the hardware from the fusion (which looks likely as of now). According to my count, she missed 72 days of 8th grade (school database count is in the mid-60s but we know now everyday was counted). That's over 40% of her 8th grade year. And the only positive thing I can say medically for this year is thank goodness she avoided the flu (which, with her lung function, could have easily killed her).
You know that I'm always waiting for the other shoe to drop. With Goldenhar, we've spent her whole life waiting. I think enough shoes dropped through middle school. Ironic for a child who literally only wears ONE pair of shoes until she needs a new pair.
To say I'm happy to bid farewell to middle school is an understatement. Although unlike some other parents, it isn't because middle school itself was a nightmare. It is a chapter we need to close. Maybe even burn.
But that's easier said than done, when my girl is still trying so hard to recover. To find her new normal. To learn to live with disorders that no one should have to. Disorders with no cures and no true relief. This past weekend, Kennedy talked her BFF into going on a ropes course with ziplining at the end. It was her attempt to convince Andrea that she wants to zipline with Kennedy on our cruise. She struggled; although admittedly so did Katie as it was difficult. She came her and joined us in the pool, only lying on a float. That's not my mermaid's MO in the pool. It reminded me of last summer, when her swimming activity raised red flags with me. By evening, she was sobbing and went to bed way before her normal schoolnight bedtime. It had just been too much for her. We've seen many days like this. Many tears. Many things just being too much.
So we close the middle school chapter. And we put the bookmark in and take a break this summer. We rest. We heal. Her mind, body, and especially her soul. And we pray that the next chapter, which we'll begin in August, is a much better chapter, a much healthier chapter, a much happier chapter, than this one has been.
