This is my story of my beautiful grandbaby, Collin. My grandson and his parents (my son and daughter-in-law) live over 100 miles away, so it was a good 2 hour drive. They were here for a visit in October after Collin started to show signs something was wrong.
He cried most of the time and could not be comforted by anyone but his parents. They started running tests. They got the diagnosis in January and went to Pittsburg for more tests and to meet a doctor that specialized in Krabbe disease. Although he didn’t qualify for a transplant, she was very helpful. Much of my support was via phone calls. I tried to be available to talk with them and be a sounding board. None of us had all the answers but I provided some wisdom I developed from fostering 25 children. We went to visit in person to provide support when we could. Because Collin had so many medical needs, we spent much of our time with his sister, our granddaughter. I remember feeling helpless.
I prayed a lot and reached out to my girlfriends for support. I learned to take one day at a time. I wished we could have spent more time with him, but my husband had medical needs that demanded we stay close to home. When my husband could get away, our son and him would spend quiet times fishing and hunting and just being in the presence of each other. There is never a day that goes by that I don’t think of him. Even though he couldn’t talk he had his ways of communicating. Sometimes it would be the way her rolled his eyes. I LOVED him so much! When he passed, we requested donations go to KrabbeConnect to help other families.