I closed my eyes and the darkness of the room engulfed me. I could hear the faint beeping of the hospital’s monitors. Maggie my 13-year-old daughter sighed as she tried to get comfortable in the hospital bed. A few minutes beforehand she once again refused pain medication from the nurse even though her pain was an 8. She was not trying to be a superwoman. The pain medicine left her feeling funny and did nothing to touch the pain. I had to be strong for my daughter. I prayed to God to help my beautiful girl. I prayed for resilience for myself. Maggie did not need to see my fear. She was scared enough with the unrelenting pain and so few answers and no relief insight. She needed her mom to remain calm and to make sure all the health care workers were working towards an answer that would hopefully bring relief.
A few days later we arrived at home with a medical answer that none of us wanted. I was still stunned and shocked, how could two of my kids have the same rare disease that supposedly contained no genetic link? Liam and Maggie have a lot of things in common besides being brother and sister. Liam and Maggie both have juvenile arthritis along with Chrons. Their Chrons is in medical remission with Remicade (If only their arthritis could be in medical remission too). Why did both kids need to share this new disease, eosinophilic granulomatosis polyangiitis (Churg-Strauss), a disease I could hardly pronounce. I started to struggle with the enormity of the situation. Why did everything suddenly feel so hard with Maggie’s diagnosis? When I closed my eyes, all I could see was darkness, a vast sea of the dark with no relief in sight. I was haunted by the feeling that somehow I had failed my daughter. I was okay during the day going through the motions, arguing with insurance (which seems to be one of my favorite pastimes) making follow up appointments, and going through all the rigmarole of everyday life within our household. But when things got quiet or I had a moment to myself, the darkness returned. I wondered if this was the proverbial straw that broke the camel’s back. The kids had endured so much medically and I had been with them every step of the way as their rock-solid support. But now all I could do was look up and not see the top of the mountain. I was alone. Life was quickly dissolving and I did not like who I was becoming.
I love life even with all the hiccups and nasty mess that comes with it (given the choice, I could skip the cat vomit). I prayed and when I got done praying I prayed some more. I realized my problem was I had lost my community. This horrible diagnosis of my child came at a time in our history when our nation was locked down. We were not free to move about where we lived. The hospital was closed to every outsider including everyone in our family except one parent or caretaker. When Maggie was feeling better, she could not participate in her favorite activities like ice hockey or meeting a group of friends and going to the beach. I was unable to meet friends for coffee or go out to dinner with my husband. My escapism of going to the library was now off-limits also. Worst of all, there were no quick stops for adoration or going to Mass. When Maggie was at her worst, we were informed the priest would not even be able to see Maggie to perform anointing of the sick even if, God forbid, she was on her death bed. The darkness that surrounded me was because I was confronted 24/7 with my children’s mortality. There was no escape using the normal coping techniques that I honed throughout the years. Instead, I needed to come up with a new way of coping with my children’s health during COVID.
The very hardest thing for me was to admit I was human, and that I needed to mourn with my child. It is okay to be sad about what the future could have been. It is okay for me to be angry at what has been dealt to my child. What is not okay is for me to stay angry. The darkness that I was experiencing did not mean I was abandoned by God. He was always with me every step of the way even when there was no adoration or Mass. When I feel overwhelmed by the enormity of the situation, I only need to take it day by day and when that is too much then hour by hour. When the scary thoughts entered my head in those moments of silence, I replaced it with prayer. When the prayer was too much, I just asked God to help me because I was drowning at that moment. When I had days that pushed me to my breaking point, I instituted a rule with my family that the only thing they were allowed to talk to me about for the evening was unicorns, rainbows, and sparkle stars unless someone lost a limb. And if someone did lose a limb- don’t come crying to me. Go get out the duct tape and take care of it. It did not take long for the heaviness in our family to lighten up. We started to laugh again. We started living life even in our tiny bubble of the world. We still have the occasional bad days but we know it is not a place we have to dwell and through God’s grace things will be better.