Returning to clinic...a month later

I was anxious in a bad way about our return to Riley last Tuesday. We had been able to stay home for an entire month and I didn’t know how Ev would handle going back. In times previous when we had a lull in visits and then returned it was harder for him. He was more resistant to the situation. So, I prayed a lot as the day approached.

One thing life has taught me is that I am a strong and focused woman, but those qualities have limits to them. It takes a lot to care for a sick child. I knew that I would fall short, I used our month at home to live outside of his illness more than I had been able to previously. It was important for me to acknowledge my need for God’s presence, strength and guidance. (I can’t think of anything that’s not cliché to say in this moment, so don’t let my use of it deter its trueness).

Ev told me he didn’t want “wrinkly eyes”. When he gets a spinal tap he is sedated and refers to that as “wrinkly eyes”. I told him exactly what was happening, as it was happening (he gets other meds and he doesn’t know when the sleepy medicine is coming and so he was nervous). It was the most peaceful spinal tap he has ever had. He was listening to me rather than screaming and flailing…his doctor and I kept looking at each other in astonishment.  There was even a med student in the room and we had prepared her for how unnerved he gets, except it didn’t happen. And, when he woke after the sedation wore off, he told me he didn’t get “wrinkly eyes” (even though everything was done the exact same as all the times before).

For those who don’t believe in God this will seem obtuse, but for those who do and have experienced the peace and joy that comes…this will hit home. I was almost in tears at the blessing of Ev, a toddler, having a moment of peace and stillness in a moment that has caused him severe anxiety the ten or more times it has already been done. The day went smoothly and we were out of the hospital a little after noon. And, it was great that it happened to me a warmer day, so Ev got to play with brother outside when we got home. A day I had dreaded became a day of joy.

God was there. He has been here through all this…even when I wanted to write Him off in my anger and confusion. It is joy to know that God is there for me and it leaves me speechless when I see His hand on my children. 

Three weeks

I can see the goal and it's almost in reach! It has been three weeks since we were last at Riley and if we make it 8 more days then we will have achieved another goal...no unscheduled visits, or admittances for a month.

When I first heard that we would only be at the hospital once a month it was such a relief to know we would get a break and that we would be another step closer to moving on with our lives, for Ev to be healed. Then, when I saw the list of meds that he would continually be taking, I pictured these monthly visits to be a mirage. I figured his counts would be so low that we would find ourselves with a fever and back at the hospital. To me great joy, we have stayed away and it feels great.

Ev has been doing well and is unfazed physically and emotionally by the drugs he is taking (there is no extra drugs beyond the basic to combat side effects). He acts healthy, playing with his brother, fighting with his brother, tackling anyone in sight, dancing to music, practicing karate kicks, eating as much as a grown adult and bonking his head a million times during the course of a day. We are blessed.

Ben just kicked a 24hr. stomach bug. He was puking and had a temp of 102. None of us like seeing our kids in this shape, it bites. But, when he woke this morning he was good and so far Ev has not caught the bug. How is that even possible?! We'll take the blessings as they come.