Sometimes I get discouraged. One evening many months ago Jaime and I were talking and I was confiding in him that it was so, so hard to keep doing breathing treatments and therapy sessions and to feel like all that discomfort, all that effort, all that striving was doing nothing more than slowing the decline and maintaining a level of health that was so far below what I wanted it to be. I was feeling beat down. Jaime asked me that night what he could do to make it better. I said, “NOTHING!” I felt there was nothing that anyone could do to make it better.
Jaime didn’t forget our conversation. That year for Valentine’s Day he passed over the chocolates; he ignored the cards and flowers. Instead he fashioned a space for me in our guest room, a little sanctuary of sorts for me to do my treatments. He found a dresser that had a drawer deep enough to store my nebulizer and a removable tray where I could keep my medications. He punched a hole out the back so the cord could go directly into the wall and I could just slip the machine in and out of the drawer when I needed it. He bought me a comfy chair to sit in (I had been sitting on the bathroom floor). He got me a picture frame so I could look at a picture of Lucas (a touch more inspiring than staring at the toilet). He purchased an iPad mini so I would have lots of fun things to do to pass the time during my treatments.
And it is so much better. Now when I’m doing my treatments, I remember that I am not alone. I feel the love of my husband who helps me carry my burdens. I remember that my heavenly Father also loves me and that I can cast my cares upon Him (Psalm 55:2). I look at that picture of Lucas and I am willing to do whatever I can to slow the decline and maintain a level of health that, yes, is less than I wish it to be, but that still allows me to live a very full and very happy life.
A year and a half has passed since that initial conversation and Lucas has now infiltrated this space. He joins me daily for my morning breathing treatments. He has commandeered my iPad (notice the cushy blue case). Sometimes he kicks me out of my comfy chair. Sometimes he sits on the bed and watches Sesame Street or Curious George.
Often he stands right at my side or sits on my lap and plays games.
It’s not quite as peaceful (especially if he starts yelling “Mommy breathing treatment all done now!”) but I love the company. His little hand on my leg, it steadies me. It fills me with hope. All these things make it so much better.