Its not often that I’m without words, but recently I have felt quiet and contemplative. The two words that have been on my lips most, are a diagnosis I struggle to pronounce, let alone understand: Juvenile Dermatomyositis (JDM).
These last few days since we’ve been home have felt like I’m underwater holding my breath. The same house, the same rituals and to do’s, the same family, but a very different reality.
I’m preparing myself to emerge back into the world with Elyse. It almost feels like when we introduced her to the world as a newborn, watching her every move with careful optimism, wanting to keep her within arms reach.
When you see her it might seem like you’re meeting any 18 month old toddler, her belly pooched out as she marches with a proud waddle. She makes one word declarations, wearing the world on her face with exaggerated expressions. When you see her, she’ll probably say “Hi” three times with her wide smile. You’ll notice her face is fuller and less blotchy, her big wide eyes reflecting her enthusiasm, the shadows beneath them hint at tiredness . She might make wide circles around you, gaining momentum and confidence with each step as she clucks and coos with glee.
In these moments we get to celebrate life with her as it should be, an energetic baby enjoying and exploring the world around her.
At home we also deal with another, new reality.
Each morning and evening we give her Prednisone, a steroid with undesirable side effects such as insomnia, weight gain, aggression, blood sugar changes, osteoporosis, and stomach upset. To counteract unwanted effects we give her Calcium, Vitamin D and Zantac. Prednisone suppresses her immune system so we have to protect her from being exposed to unwanted cooties- meaning avoiding crowded enclosed places or large groups of children.
Because the sun can worsen the effects of JDM we need to avoid the sun during peak hours, and be vigilant about protection. E is embracing the hat as her new accessory.
Once a week, we give her a shot that is a chemotherapy drug called Methotrexate. We have to wear gloves to avoid contact with the very liquid that we inject into our baby’s skin. This is designed to work with the cortisteroid to quiet the overactive immune response that is attacking her skin and muscles .
The needle is tiny and the dose is very small. Though difficult, we agree these are the steps we need to take right now. After 30 minutes of practicing on fake plastic skin, Nate played the brave daddy and gave her the first injection (I played the pregnant for 9 months card).
Once a month we will go to the hospital for Elyse to receive a 6 hour IV drip of Intravenous Immune Globin (IVIG) which is a lot like a blood transfusion, but IVIG is made up of the plasma of up to 15,000 blood donors. Our nurse calls it liquid gold. I keep telling Elyse that it makes her sparkle.
E gets to play with a Physical Therapist twice a week until she rebuilds muscle strength and mobility, She thinks its pretty cool to have a personal trainer that gives her undivided attention, and beach balls.
E will have good moments, and moments when she is uncomfortable and fatigued. We hope the good days will be more and more.
We’re still taking time to absorb our new reality; to figure out how our lives will be the same and very different.
Right now the words Juvenile Dermatomyositis taste bitter and unnatural. The doctor confirmed she’s the youngest child he’s seen with JDM, as the average age of onset is 7 years old. I know that God lets us taste the hard things in life to help us appreciate the good. As we learn about suffering, we learn more about love. There is no turning back from this road that we’re on, and so we will trust God through this journey. We will celebrate God’s goodness; we will taste His fullness as you feed us; His faithfulness as you pray for us and walk beside us; we will grow to understand how wide and how deep, how long and how high His love is, as we love our daughter, knowing somehow He loves her even more.