I have always intended this blog to be a place for me to record and share all of our "happy memories" and decided early on not to write about Avery's illness. As time goes on I realize how ridiculous that is/was. Tuberous Sclerosis Complex is as much a part of Avery's life as anything else, and so by not writing about it, I feel like I'm trying to "pretend" in some way that it doesn't exist. Perhaps someone who stumbles across our story will have their eyes opened to this horrific illness, or perhaps someone else is going through similar struggles and can relate.
So. I'm going to start from the beginning, for those of you just joining us, welcome, it's nice to meet you. Get comfortable because it's a long story. . . .
The truth about Miss Avery is this. When she's happy, she's gloriously, joyfully, happy. And when she's mad, look out. I have spent most of my time writing in these journal entries about the positives and joy Avery has brought to our lives (which are so many) but reality is that most of the time, Miss Avery is incredibly high maintenance. She's very fussy, irritable, cranky, whatever you want to call it, a lot of the time. She always has been. She is a two and a half year old little girl who seems to have a really bad case of colic. Is it because of the her disease?
I have no idea.
Tuberous Sclerosis Complex is a nasty, nasty disorder that causes benign tumors to grow on every organ of the body. Avery has tumors on her brain, heart, kidneys and skin. When people hear the word benign they think "harmless" but these tumors are anything but harmless. Avery suffers from horrible seizures that interrupt her play and fun every single day, leaving her exhausted, confused, and cranky. When Avery was only a year old, she underwent two critical brain surgeries to remove tumors that we doctors thought were causing her seizures, sadly those seizures returned only six months later. We almost lost Avery to post operative complications. . . but that's a story for another day.
Back to Miss Avery . . . we know lots of little ones with TSC who don't spend their days fussing, so maybe it's just Avery's personality? As anyone who has ever spent any significant amount of time with our sweetie knows, she’s a ‘fuss bucket!’ (But a very cute one!) I’ve finally accepted it, and just do my best to keep her content, even if that means the laundry doesn’t get done and the house is a wreck. . .
I can remember when she was seven or eight weeks old and cried for hours on end. Everyone kept telling me to just hang in there a few more weeks, because all babies outgrow their colic by three or four months. Instead Miss Avery just cranked it up a notch with every passing week. I read every baby care book I could get my hands on, and nothing applied to or worked with her.
Then one day her eyes rolled up in her head and she started convulsing violently in my arms.
It was so surreal. Everything seemed to slow down, and as I held her tiny jerking body I thought rationally to myself, 'she's having a seizure,’ in some ways it was a relief. I know that must be hard to understand, how could your baby having a seizure in your arms be a relief?
From the first days of her life, I sensed something was wrong. I just couldn't explain it to anyone. We were at the doctor almost every day for those first few weeks of her life all to no avail., so when she had that first seizure it was like, "Oh, so that's what's wrong with you, you poor thing."
Avery had almost driven me completely over the edge by that point, and so it took me awhile to convince my poor husband that our baby was truly seizing. He was in the shower when I came running in with Avery yelling, “She’s having a seizure!” I feel bad for him because I know he probably thought I had finally, completely lost my mind. I was seriously sleep deprived, as Avery had gotten up every hour on the hour for two or three days before the first seizure. Her longest stretch of sleep that week was literally, thirty minutes.
Britton was working late nights most of the time and so finally, I packed up her cradle, her blankies and binkies and headed home to my parents’ for some backup. I had already shipped poor Kaylen off to Grandma Joy's in Salina. Avery then had another seizure in her infant seat on my parent’s kitchen table, but of course Grandma and Grandpa were unloading the car and didn’t see it, so when I again proclaimed, “She’s having a seizure!” they weren’t entirely convinced either.
I’ll never be able to explain what seeing those first two seizures by myself felt like. I knew what they were that day, somewhere in my brain it the fact that my baby was having convulsive seizures spelled disaster, but I can understand why no one else immediately thought anything was really wrong with Miss Avery. They just assumed I needed some sleep. (Well, that or they assumed that I was completely crazy, and by that point they were probably right!)
That night my mom took Avery for the night and I slept downstairs on the couch so that I wouldn’t hear her. But in the middle of the night I heard my mom call out for my dad, and I ran upstairs to find Avery seizing in my mom’s arms. I was again overwhelmed with those bizarre conflicting emotions of relief that I wasn’t losing my mind, mixed with terror in my heart for Avery.
The road since that day over two years ago has been a bumpy one to say the least. Someone asked me shortly after her brain surgery, “So that’s it? She doesn’t have TSC anymore?” Ahh, if it were so simple. Avery will always have TSC. Avery continues to have seizures every day. She has tumors in her heart that seem to have been acting up since the surgery, tumors in her kidneys that we may have to deal with down the road, and too many skin lesions to count. Women in particular sometimes develop tumors in their lungs later in life. Oh, and let’s not forget the dozen or more brain tumors left in her brain.
This journey is just beginning.
I don’t usually feel sorry for us, because I know of so many other families who are fighting more difficult battles than ours. And this may come as a surprise to you if you have healthy children, but in so many ways the diagnosis of TS has brought blessings upon our family that we would not have received otherwise. We’ve met so many amazing people with such courage and love, we’ve learned to treasure our time with our babies, and we’ve learned to trust our God more each day. I understand my God better now than I ever did before, but that’s a story for another day.
You can’t look into Miss Avery’s beautiful green eyes and see her breathtaking smile and feel sorry for yourself. She’s among the most precious gifts I’ve ever been given, and I will never give up trying to give her the amazing life she deserves.
To be continued. . .
