We have a chronically ill child, nothing life-threatening, but horrible nonetheless. Chronic illness changes you. As a parent you are scared and worried but also know that it could be so much worse. Almost to the point that you don’t want to complain. When Jeffrey would need to go to the hospital I would feel guilty being upset as I saw all of the other kids that were obviously fighting more serious battles. But internally there is so much fear and anger. No parent wants their child to suffer, ever. It breaks you into a million pieces on the inside. Chronic illness does that to you over and over and over. Then you just have to get up the next day and move forward. Due to the nature of his illness, it is cyclic (comes and goes), we started to live on edge… when will it happen again? Can we go away? Will it ruin everything?
Then it would happen and Dan and I would go into high gear. We jokingly called it “DEFCON 1” because we needed to laugh during the stress. Then it would be over and we needed to change gears and get back to life, but the emotions don’t go away so easily, the anger, fear, frustration and grief stay. So how do you process it all when you have no control and have no idea how long of a reprieve your precious child will receive? For us, it just takes time. We accepted over time that this was our new normal… But that in and of itself is sad. The acceptance that our child would needlessly suffer these bouts of unrelenting nausea and vomiting. Why? Why us? Why him? Wasn’t his autism, hearing loss, intellectual disability and global developmental delay enough?
Here is the beauty of Jeffrey, he is the strongest person I know. We have gained our strength through him, through his resilience and graciously through his ability to live entirely in the present moment. It is a sight to behold, to watch him just live, not dwell on the hand he has been dealt. He has never said “why me”, not once! Isn’t that amazing?? If it was me I would be wallowing in self-pity and he doesn’t, not ever. This is why I always say I wouldn’t change Jeffrey ever. Sure I wish his life were easier because I want that for all of my children but the lessons I have learned from Jeffrey are not lessons I could have learned without him.
