How's Adelaide doing?

One last kiss before surgery this week

One last kiss before surgery this week

Three words, grammatically so simple, but connotatively so complicated. I mean, its weird, right, if someone doesn’t ask that when they see me? Don’t get me wrong, I am beyond grateful for everyone’s care and concern but the question is daunting. So much goes into calculating the answer: how much does the person really want to know? How well do they know the situation? What was the last update they received? What can I emotionally handle in response? And most importantly, how much time do we have? 

Like many medically complex kiddos, Adelaide’s status is fluid. Someone may see me on Sunday and she is alert and holding my hand but by Tuesday we’re back in the hospital because an increase in her meds has put her in a relative coma. Then of course that person follows up and says they are so happy to hear that she’s improving and I have to tell them that it was short lived thanks to her ever-adjusting med plan. So, basically, boo.

My typical response these days is that, “she’s stable”. This week that means that she’s still having near daily seizures but they’re not debilitating, she’s on oxygen 24 hours a day but manageable amounts and she’s awake more than she’s asleep. I mean that’s a pretty great week in our book! …I just reread this paragraph with the mindset of someone who doesn’t live this way and realized how difficult and depressing that may sound and that was actually not my intent. This is our weird normal and we do have to celebrate our tiny victories. I truly don’t want anyone to pity us because that doesn’t help.

That said, I struggle with the balance of not wanting pity but still aching for people to understand. Awhile ago I mentioned to a mom that Adelaide’s seizures had gone from six 20-minute seizures a day down to two 1-minute seizures. She responded with “that’s great that you’ve found a treatment that works!”. To which I corrected, “well, we found a treatment that is helping but I wouldn’t say its working”. I know its semantics, I know that the mom meant well but if her child was having two seizures a day I don’t think she would be satisfied either. Obviously 6 damaging seizures down to 2 mild seizures is an improvement but my desperation for a treatment and/or cure remains, and a part of me needs everyone else to feel that sense of urgency as well.

Tiffany Kairos

Tiffany Kairos

Now that you’re terrified of running into me on the street because you have absolutely no clue what to say to me, let me try and clarify. For starters, I get it: my kid is sick, our situation sucks and its difficult to process. There really isn’t much most people can do for us and they are at a loss as to what to say. Don’t tell my parents I admitted this, but it turns out I don’t have all the answers. So, I’m turning to a friend, Tiffany Kairos, whose article I recently read on The Mighty about what you can do when people tell you they have epilepsy. I LOVED her suggestions and think they apply to this situation too:

  1. Tell them, “I’m not sure what to say, but I want you to know I care.” I love this, because it is honest. The truth is that I’m not sure that there is a right thing to say.

  2. Assure them, “If you would like to talk about it, I’m here.” Absolutely! But only if you mean it and are actually comfortable talking about it. Its ok if you are not, but then don’t offer because the last thing I want to feel is that I’m stressing you out or upsetting you.

  3. Assure them, “Please let me know if there’s anything that I can do to help.” See #6.

  4. Offer interest in understanding what the person is going through. However, understand the person may not want to talk about it right away. This. I clearly love educating people about epilepsy and our world but I get that not everyone in my shoes feels the same. Also, believe it or not, there are even some days where I would rather not speak about it too, so thank you in advance for understanding.

  5. Bring humor into the picture if it appears to be the right moment for it. Humor can change moods and even lighten the load…Find a way to bring happiness and joy into that person’s life. Yes! This sh*t gets depressing! Let’s laugh! Also, sometimes I just can’t with our everyday life and a little avoidance via humor (or margaritas) is just what the doctor ordered. 

  6. Offer to help them with things they may need such as running errands, going to the doctor, preparing a meal, picking up prescriptions, etc. Be as specific as possible. OK, offers to help are great as mentioned in #3 but the specificity in #6 is key. What exactly are you willing to help with? Can you take my son after school? Bring dinner? Walk our dog? Also, I’m a little prideful, and have a funny feeling I’m not alone here, so sometimes its hard accepting help. Even if I refuse your offer, it meant a lot knowing you asked.

  7. Allow there to be room for normal non-epilepsy talk in a day. Sometimes a person can feel as though their entire lives are consumed by their condition. When that’s the case, it feels great to have distraction. I couldn’t agree more. Also, it can be nice to hear about the drama in someone else’s life for a change a) because I care, and b) because its a refreshing, and humbling, reminder that everyone else has baggage too.

So, yeah, Adelaide is stable, we’re in the trenches, it sucks but we’re taking it a day at a time. Thank you for asking. It really does mean a lot when you do.