Its been a few weeks since my last post/update. After Maddi’s last Rituximab infusion, things were looking really positive. She seemed to be doing so much better. She was happy, skipping, full of energy. We discontinued the Risperdal about two weeks ago, yesterday. She had been down to one dose for about two weeks, and it didn’t really seem to be helping her much. She was still cranky and irritable, but no where near as severe as before. For the first time in months, I took a deep breath.We went to a Neurology follow-up and I sat across from the Neurologists and said: she’s great! she’s doing wonderful! she’s getting better! I really did believe it, and I still do. She’s so much better than she was 3 months ago. Every day I see more and more of my sweet, beautiful girl busting out of the crazy shell she’s been in for the last 9 or so months. But. For every single bright reminder that she’s getting better, we have a quick jolt back into the reality that she’s still really sick. This is one of the hardest things that I’ve had to come to terms with in my new role, “Mom of a chronically ill kid,” that she’s always going to have ups and downs. Right now, our ups and downs are almost daily. I have made lots of connections with other AE survivors and parents, and I feel hopeful that yes, one day our ups and downs will be years, maybe decades apart from one another. But. Right now, it kind of sucks.
My morning started at 3am, when I woke up to Maddi sitting up in her bed and vomiting. “My tummy really hurts Mommy,” she said between dry heaves. This was the third day in a row she had complained of a tummy ache, and I could only attribute it to withdrawal from the oral steroids that she completed on Sunday. Just one more thing to add to the list of, “What the hell’s?!” My five year old detoxing from medications like some drug addict. I don’t remember reading this chapter in the guide to raising kids. So, up we were at 3am, trying to keep her comfortable and encouraging her to fall back asleep. Luckily, my Mom is wonderful enough to be Maddi and Jaxon’s caretaker during the day, and she was able to come to our house so Maddi could rest and be comfortable. Neither Jason or I can take off of work; we’ve both exhausted any PTO or leave time, and the little bit we do have, we need to save in case she has a relapse and ends up back in the hospital. So, I was already feeling really bummed out and kind of useless as a parent because I really wanted to be home to snuggle and comfort her, but couldn’t. So, I climb into my car and get the notification that my “timehop” from Facebook is ready. The first thing on there was Maddi’s bright and smiling face, dressed in her school shirt, holding a first day of school sign from a year ago today. I couldn’t help but cry. That picture reminded me of so much that we’ve gone through in the last year, and so much more that we have to go through. Another up and down of having a chronically sick kid, all the unknowns. It’s frustrating when people ask me about Maddi’s illness, and how she’s doing, and is she better, etc… I don’t have any answers, because I just don’t know. The doctor’s just don’t know. Its the most frustrating experience ever. My husband keeps saying: I can’t wait for her to get back to normal, but what is that anymore? I don’t think that Maddi will ever get back to that “normal,” and in a way, I’ve had to come to terms with accepting that this life and this Maddi is our new normal. Another wonderful thing to deal with as a Parent with a Chronically Ill Child, is the constant up and down of your own emotions and feelings. I teeter somewhere between being a peace, and being really pissed off. I have accepted that I have some traumatic stress that I will need to deal with. I am trying to be kind to myself. I’m trying to remember the blessings that have been given to Maddi, and to our family. We caught her disease early. We have a good treatment plan. We have a lot of support. Her story is going to reach thousands of people. This is not all in vain. My baby is alive.
Despite all of those blessings, I’ve also had to accept that I am mourning the sweet girl that I knew, and trying to make peace with the girl I have in front of me. I am mourning the moments of her childhood that we are loosing every day because of this illness. I’m trying to understand God’s plan for her, for me, for our family, and in turn, I’m learning how to trust him.
**Since May 17th, 2016, Maddi has had 3 rounds of high dose steroid pulses, 2 rounds of IVIG, 2 Rounds of Rituximab, 4 hospital stays, 9 weeks of oral steroids, 8 weeks of Risperdal**
Current symptoms: Transient irritability; heighted when tired. Extreme inattentiveness, difficulty focusing and following along; continued deficits with short term memory and cognitive processing. Occasional explosive reactions (but easily managed). Aggression towards objects. Excessive appetite. Excessive Urination. Openly defiant.