While life has been quite busy there has been a nagging sense of something missing. A sense of something doesn’t fit or isn’t quite right. Did I forget to turn off the stove, grill, return an email, learn French, or from my years of flying for United ~ did I forget to disarm the slide from the aircraft door?
Something is different.
It took me some time to figure it out but I realized that I am navigating a world after the tornado.
Larkin’s health issues hit at 3 weeks, gained strength at 5 months, and became a category 10 by 19 months. The storm receded in April of 2009 but by then I was pregnant with the twins and life didn’t really have stability until the beginning of June 2010. Fourteen has graduated from middle school and the major decisions of where he will go to high school and how he would spend his summer were made. Larkin’s schedule set, Brin and Erin are a ton of fun.
So what is this strange feeling I’ve been having? It’s my shoulders down below my ears and neck. My iron smile slipping a tad bit. I have the ability to hold a conversation with a Neurologist, ED Doc, and the occasional infectious disease specialist, but I haven’t had to.
Dare I say it? Do I tempt fate?
I am standing in the rebuild of our new normal, breathing and enjoying our family, while still in a little bit of shock and awe at what we lived through the last 3.5 years.
The tornado ripped through our life, we stood in the middle of the aftermath for a few months and the build began without us knowing we were doing exactly that …. rebuilding our life.
Larkin takes my breath away every single day. Her hair began to grow after we stopped the ketogenic diet and in the summer we go the pool so she can swim, and I find myself putting her pigtails in each morning. She eats a bowl of cheerios or oatmeal for breakfast while the twins play with the pots and pans at our feet. She has begun to pick up her feet to put her legs into her shorts as I get her dressed. She laughs at us when we tell her “NO” and laughs with the most infectious giggles when she is playing on “mama’s bed” with my 10 or so pillows.
I also realized that I was anxious for the twins to hit 6 months because life with Larkin went truly bonkers when she was 5 months old. In my goofy way I just needed to get the girls past that mark and then I could breath a little bit easier, I could stop watching them like a hawk waiting for signs of seizures. Although I must admit ~ I never stop watching.
The everyday things about life that most take for granted, give us the deepest joy and laughs. Truly I promise that the fact that I can pour her a bowl of Cheerios with strawberries and enjoy our morning just like almost every other family BLOWS ME AWAY. Granted I am giving her medications with her bites of cereal that General Mills most certainly never envisioned but never the less she is lowering her cholesterol AND seizures. HA! Can you just envision the commercial “Cheerios with 12 essential vitamins and whole grains, combined with Felbatol, Vigabatrin, and other drugs help keep your brain seizure free!”
I am a farm girl and I have seen plenty of tornadoes in my life and have had to help clean up after. TV is one thing and there was a movie about chasing storms but for those of us who have hidden in the cellar waiting for one to blow over, hoping and praying that no one would die, tornadoes are a force that you just don’t play with.
Our family has come up from the cellar and evaluated the damage. Now we are putting down roots in happiness that we thought would never come our way. But we all know that there is a calm before the storm. When we least expect it there is another reason to look at the sky and think (as Ray Bradbury wrote, “Something Wicked This Way Comes”) what is going to hit us next?
We know the tornado will come again and that we are living in respite while the current drug cocktail controls her seizures. The little girl who is doing amazing things has power over our mood and for now we are basking in her growth and development.
Now hand me another 2×6 as we continue construction
Preaching to the choir my friend,preaching to the choir.
For now we all savor these moments.Pray like hell and move on.
We head to a neurology appointment Monday.So hope he won’t be changing anything up.I am comfy with the current cocktail and i sure like comfy.
So glad to hear how well everybody is doing! I love to come here & get updates on how Larkin is knocking it out of the park….gives us hope that some of the goals we have for Christopher aren’t as outrageous as everyboddy thinks. 🙂
You know, Illinois was taken out of tornado alley this year……Praying it stays that way on your end. 🙂
See you @ Buddy Walk meetings if not before! Hope we can make it this year – C has surgery on Monday.
Steph
Right on! Things are pretty great for us right now, too, if only I don’t get caught up in the minutiae of the day. But I sure am looking forward to that day when I can serve everyone a bowl of Cheerios and be done with breakfast. 🙂 Hurrah for a happy, thriving Larkin!
Wow! You put into words how I’ve felt this past year after our diagnosis.. I too, feel like we are finally coming out of the tornado but I’m also watching the skies for the next one…