Aiden's Journey

One Little Boy's Battle with Dravet Syndrome



Posted by Nicole on May 8, 2011 at 9:42 PM

I thought I knew the definition of “mother” when I was 21 and newly married. My mom loved me, played Trouble every morning before kindergarten, and taught me the difference between right and wrong. She taught me how to tell the truth (sorry that took so long, Mom!), how to make friends (again, another long lesson), and how to show your respect to others.


When Owen was first born I smothered him in my version of mothering. I wrapped him in snuggly blankets, picked the dandruff out of his baby-soft scalp by hand, and cried every hour the first several months I was away from him during the day at work. (Is this a good time to mention Owen, of all my children, hates smothering the most? Or that he hates being warm, prefers his dad’s shoulder, and does not appreciate your touching his head? Maybe that’s the reason for his “colic” the first 3 months?)


When Alec was born, I mothered him in similar ways, but he appreciated it. He was my little buddy, loving the snuggles and warm blankets, the closeness, the smiles I’d bestow on him. Still, all of this is in the realm of “mothering” I thought I understood at the tender age of 23.


Aiden’s entrance to the world was much the same, except he never voiced his opinions. On anything. He was laid back, cool with whatever I threw at him, and loved everyone equally.


In the past 9 years I’ve learned a lot about mothering. I know that every child is different, and that none of them conforms to what I *thought* I knew about what it means to be a mother. But no one has shown me this as much as my laid-back, easygoing Smoochie Face.


It turns out that mothering involves a hell of a lot more than blankets, snuggles, and kissing boo-boos. It takes complete sacrifices of everything you used to love, but replaces it with surprises you could not have imagined. At one point I would have taken most of what stops me in its tracks with amazingness for granted. Moving away from family, hiking, family walks – all of these would seem typical and mundane in my previous mothering dream, but today? Today I am humbled by the seemingly simple experiences we have that are downright mind boggling for our family.


Yesterday Aiden (who has shown great improvement since starting a gluten free diet 3 weeks ago) apparently swiped some bread from the table at our dinner party. He spiraled downward with two grand mal seizures in two days in a row, the second on a large rock resulting in a huge, fat, bloodied, split open lip and loose tooth. He endured another seizure in his sleep.


Years ago that would have left us housebound for the foreseeable future. Today? Today we did this:





And this:




And this:



 Pike's Peak, from the top of Devil's Head

Our days of carrying him on our backs to see God’s awe-inspiring world in all its glory are numbered. (I think there are about two years left by my back’s calculations.) But until then, one thing I’ve learned about this thing called mothering is that it's my job is to give my kids the most amazing experiences I can humanly give them and let them decide what path they want to take. It’s possible that when Aiden is a teenager he may have no way to get to the top of a mountain. So damnit, I’m going to take him now, while we can.


We met a couple at the top (It might be these people):



Who teased that they’ve only lived in Colorado for 18 months and didn’t need to climb EVERY mountain in the first year. I smiled and commiserated, but pushed back the feeling of inner urgency to do it now, while we can.


So here’s my mothers’ day wisdom: Mothering is not just about love, or kisses, or playing Trouble (grateful though I am for Mom’s commitment to our game each morning). It’s about inspiration, reordering of priorities, and respect for individuals. This is what I hope to pass on to every one of my children, regardless of their mental capacity or social standing. Happy Mothers’ Day to some of the most inspirational Tiger Moms I know!

Categories: April-June 2011, Adventures

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Reply Grandma Marilyn
11:29 AM on May 9, 2011 
Touching Mother's Day for you. That which does not kill you will only make you stronger. Besides harolding the extraordinary guts of all Special Needs Children's Mothers today, I send special thoughts to all Moms who are visiting their sons in jail today. Have Courage all of you, I salute you.
Reply Nicole
11:58 AM on May 9, 2011 
Good point, Mom! Those visiting sons (or daughters) in jail, those worrying about whether their children made it to work to earn a paycheck, and those who are worrying about whether their grown children are even alive. They mean it when they say "being a mother means letting your heart go wandering around outside of your body for the rest of your life."
Reply jean swanson
1:08 PM on May 9, 2011 
Your blogs always move me but this one is amazing. You have so much compassion and are such a fighter!!
Reply Rebecca Jensen
6:23 PM on May 14, 2011 
I have enjoyed reading your blog for a while now, I too have a son with Dravets syndrome. He is 2 and we were diagnosed last summer. I have wondered about the gluten free diet since he was diagnosed but have yet to try it for many crazy reasone. Anyway, I would love to be able to contact you and chat about it. Thanks for the help. I hope Aiden is doing well.