I’ve been home since Monday, August 21st.  I’ve had time to get my bearings, spend time with my husband, Henry,  and accomplish quite a few cleaning and organizational tasks in the house and yard.

I’ve been thinking about how in life, if we are fortunate, we do not experience the ups and downs that come our way alone.  In this journey with Mark and his living life with Cystic Fibrosis I was very blessed to have a husband who was with me every step of the way in caring for Mark. He took the lead when it came to understanding the medications and consulting with the doctors. He handled all the headaches that came with insurance paperwork. Then he dealt with the mountain of red tape when we could find no insurance and had to get Mark on Medicaid. He took turns spending nights in the hospital even when having to work the next day. He spent time making charts so we could keep track of Mark’s “peak flow” numbers and be aware if they were slipping. He made time to do countless fun activities with Mark.  He was always there for him.

My husband, Henry, was an only child. I, on the other hand, am the oldest of eight.  So Mark was blessed with many aunts and uncles.  They have always been a part of Mark’s life, especially my sisters who followed me to Kansas City from Iowa one by one. Since they all settled here I was able to call on them many times over the years as they were available to help or just listen. As one example, my sister, Rita, took care of our newly adopted infant son soon after Mark turned five and had to be hospitalized. 

We left in a hurry to be with Mark right after his transplant.  My sisters pitched in and cleaned out my refrigerator, babysat my plants, did some laundry and worked in the yard. I had supportive phone calls, texts and e-mails while we were in North Carolina being caregivers during Mark’s recovery. 

So I’m taking this opportunity to give a shout out here to my husband, Henry, for always giving his all on our journey.  And also, to my siblings and siblings-in-law for their support in many ways, including the support given here on the COTA website post-translplant. A final shout out to my brother-in-law, Roger Crawford, for his continued efforts on behalf of Mark’s fundraising.

— Connie