Girl Scout

Simon has a cold -- just a runny nose, a cough, and an occasional low-grade fever, nothing serious. Nonetheless, I am worried. The last time he was sick was in October (we've been reeeealllly lucky -- either that or those vitamin C-echinacea-zinc-gummi-vites acually work...). He'd had a virus, and when his fever reached a little over 102 he had a status seizure that lasted on and off for the better part of five hours. While we were in the hospital after that episode, the doctors told us that a status seizure is possible whenever Simon becomes ill (because a fever lowers the seizure threshold even while otherwise controlled with medication), and we should be prepared for it.


At the time, all I could think was "How the hell do you prepare for something like that!?," but, sure enough, I've learned to. Currently, Simon's bedroom is fitted with what I think of as the "mini ER,"  -- a suction machine, an oxygen tank, and a pulse oximeter he wears to sleep at night. We also have emergency medicine on hand, and a plan in place which dictates that, should he go into status again, we will take him directly to our preferred hospital (the one with all his doctors), rather than call an ambulance and lose time by being circumvented to our closest hospital first.


Those are the big things, the important things, covered as well as we can. I'd recommend those protocols for anyone in our situation, along with an anti-suffocation pillow and (coming soon!) a seizure response dog. I am still constantly on the lookout to find more ways to keep Simon safe and avert future crisis, as any parent would.


Strangely, though, I find that it is the little things -- the tiny comforts I have stashed, that bring me the greatest sense of inner calm. In my handbag I now routinely keep my headphones and charger, a notebook and pen, instant coffee packets, and extra toiletries for days' at the hospital uninterrupted by sleep or showering. At night, if I am really worried, I put Simon into bed with me and I sleep in my sweats. Within easy reach I keep one of Simon's favorite blankets and more appropriate "street clothes" for myself (because it is amazing how much more confident you can feel when you are wearing a proper bra and have shoes on that match). I've even been considering keeping a bag packed like I did during the final weeks of pregnancy.


At first, I was puzzled by how important these relatively unimportant things felt to me, but over time I have come to an understanding with my oddball self. True to my control-freak nature, I like them because they are the only things I actually have control over. I can't prevent a seizure, but I can make sure I have my phone charged to communicate with doctors, friends, and family. I can't avoid a PICU stay, but I can have the means to wash my face and make a cup of coffee to stay awake throughout it. I can't take this awful thing away from Simon, but I can wrap him in his favorite blanket and play him his favorite songs to comfort him. I can't change what is, but maybe, if I am a good scout, I can be prepared in mind and body to do the right thing at the right moment and we'll get through it together.


girl scout badges - 2/365, a photo by TrishSince1977 on Flickr.

Tigers, Dragons, and Dogs

Have you read, or heard of, the "Tiger Mother" by Amy Chua? I'd be surprised if you hadn't (it was quite the meme), but, in case you have not, it is the autobiographical account of one mother's decision to raise her children the "Chinese way" (her words).

According to the Chinese zodiac, those born under the sign of the tiger are brave and fiercely competitive. As a "Tiger Mother" Chua accepts nothing but excellence from her children in everything from grades to handmade birthday cards. She is uncompromising, and to a degree successful. Her children have straight A's and one even made it to Carnegie Hall. As justification for her methods, Chua says that she chose to do things the way she did because she believed that her children had the potential for greatness, and that to expect anything less was to insult them.

When I read the book last summer, I honestly had mixed feelings about the Tiger mom approach. On the one hand, some things she recounted were so far from the norm you had to question her soundness of mind. But, on the other, I've always been very hard on myself, and being the mom of a "gifted" child that I sometimes see myself in, I can understand the temptation to carry that impulse over. To push my daughter to where I know she can go, and not accept anything less.

Except, I have to pause at that word... accepting. Learning to accept the way things are has been a key part of my experience as the parent of my other, "special needs" child. I may not like, or want, the challenges that he has been dealt; cognitively or medically, but I have learned that in order to cope with them or move beyond them, I have to accept them. They are a part of our family. To deny that through stubbornness or anger would be just as ludicrous as turning away the truth that Amy Chua missed out on through her willful blindness to the more basic kinds of love her children were offering. To be heartfelt is to be perfect.

Last week, when a friend posted the article "Notes from a Dragon Mom" by Emily Rapp, I immediately got the fiercer-than-a-Tiger reference. It also stood out to me because my Chinese zodiac sign is that of a dragon (something I've always been secretly pleased about -- dragons are cool! Way better than Brian's sign of a rat...).

I knew that dragons were said to be passionate, creative, and unafraid of challenges, the flattering characteristics I liked to associate with myself. However, it wasn't with so much pride as with a touch of sorrow that I understood the perspective of the writer. Rapp knows that she is going to lose her 18-month old son to a terminal illness, and she has learned how to keep going and be a parent despite that heartbreaking knowledge. To quote the article:

"This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice."

Though (I thank God every day), Simon is not terminally ill, living with the understanding that he is at risk of being suddenly taken from me (more than what we all fear from the daily unknown of accidents or freak illnesses), has already changed me in ways I hadn't really stopped to understand. Like Ms. Rapp, I have come to realize that the "new normal" Simon's doctors have repeatedly told me I will get used to is something else entirely.
I now know that I have to accept it, to become a fierce new animal. A fire-breathing dragon mom, burning away the expectations for love's sake alone.

And, in its way, this could be a freeing revelation, if it weren't for that tiger mother in me. She is pretty fierce as well, and I cannot completely change my stripes. Just as I know I have to accept an awful truth, I also know I have to get over it.

I have to learn to tight-rope walk between these constellations. Between accepting what is and reaching for what can be. I know that both of my children have the potential to be great, but I also know that they are great the way they are, without qualifiers or contraindications. Without expectations. I have to take both challenges and triumphs, one steady foot in front of the other.

Which is great. Except, sometimes, you fall. And, when I fell this last time, I didn't think that there would be a net. I'm as stubborn as a tiger. Like a dragon, I don't know how to ask for help. 

So, you can imagine my surprise when a dog broke my fall.

Researching options to prevent the unthinkable, I discovered the Chelsea Hutchison Foundation -- another organization created to raise awareness for SUDEP, in the name of a child that died too young. Chelsea was 16, and the doctors never told her parents that a seizure could take her life. Her fierce Dragon parents are now trying to help others with epilepsy, through raising funds to help pay for seizure response dogs. 

I immediately contacted the foundation to find out more, and graciously, Chelsea's mom emailed me right back. She was glad I had gotten in touch with her, and she was happy to help. She told me about the benefits of service dogs and I felt the first real surge of hope I'd had in many weeks.

It was on this high that I reached out in a simple facebook post, just asking if anyone knew anything about service dogs. I had no experience with them, and googling had only gotten me more confused. I was hoping to hear from someone that perhaps had second-hand experience, or had heard of something locally. I was hoping for a place to start more research, but what I got was so much more.

It seemed that, after finally breaking my cyber-silence with last week's post and this simple request, everyone around me was just waiting for a call to action. Dozens of friends commented -- some to just offer encouragement, and some with truly great contacts. A college friend (thank you Wilson!) connected me with his partner's mom, the founder of St. Francis Service Dogs and a truly warm and knowledgeable person. She spoke with me for over an hour about my son and what a service dog could do for our family. Though she couldn't help me (they don't serve our area), she told me what to look for. Ultimately, it was an organization suggested by the Chelsea Hutchison Foundation that came through for us.

Though I know that I may not have completely changed our situation -- we don't yet have a dog, and even when we do, I know that a quick response alone won't change the potential of a seizure ending Simon's life (though we hope it decreases our risk some, particularly for asphyxiation). I know this, but I also finally feel like I'm on the road to doing something positive, something proactive. And, I realize that I'm not alone. I had turned to our doctors and specialists for help and come up empty handed. Over and over again. I turned to my friends and family for help, and not only did I come up with many truly helpful hands, I've come up with more support and love than I could imagine.

According to the Chinese zodiac, dogs are loyal, compassionate and kind. I've also discovered that they might well be able to calm the roaring of a heartbroken dragon, and the growling of an angry tiger.