2 steps forward, 2 steps back

Today was a hard day with Joel; my heart breaks a thousand times a day for him. I am so used to having an extremely active little boy, and seeing him just laying in his bed is hard. Even when we go outside he sits in his wheelchair looking rather emotionless. He really wanted to go to the park today. There is a park on hospital property so we went and sat together on the bottom of the slide for awhile. Joel smiles very rarely.

How I wish I could climb into his head and see what he is thinking. My guess is that things are pretty scary and confusing right now. Everyday there are new people coming in the room who all know his name, they poke at him, ask him questions and give him terrible tasting medicine. His speech is increasing yet he is harder to understand than before his surgery. Joel has no patience with me if I don’t understand what he is saying right away. We have had some major meltdowns today.

Joel’s right side seems weaker today. He did not want to walk at all. If I put him on his feet he immediately transfers his weight to his left side. A few days ago he gave me a grin, today when he smiled at me the right side of the face goes up higher then the left. Trying to get him to the bathroom he started to cry and stopped supporting himself. I am concerned about these things and I’m looking forward to Tuesday when hopefully we connect with rehab.

We were blessed with lots of visitors Mr. Stephen and his son Peter were by. Then we had Sim and Truusje followed by Savannah. It is wonderful to have all of this support; your prayers, emails, and visits are a great comfort.

Please pray for Joel’s right side to strengthen. His stomach is still distended so if you could pray for relief there too, that would be great. He is a sweet little guy who is terribly confused and just wants to go home. I’ve been told Joel needs to be walking on his own to go home; at the rate we are going I feel like we could be here a long time. Yet, that being said, children are so resilient and tomorrow is a new day.

I think we have all heard stories of someone getting lost in the wilderness or a desert. They become disoriented and loose their way. Not sure which way to turn or how to proceed, they flounder. This experience has felt like we are the ones lost and searching, yet I have faith that God has not lost sight of us and He knows the right path for us to take. His Word says,
I will even make a way in the wilderness, and rivers in the desert.
Isaiah 43:19
Imagine that a river in the desert. There are many verses throughout the Bible that tell us that even in our struggles God provides. There is no promise of a life without hardship here on this earth….but there is a promise of a life without hardship. Today was Easter, the day when we celebrate the tomb being empty and because of that we can trust there can be a life without suffering…in heaven. I cannot say what the future will bring not even what tomorrow will bring but I have faith that God is at work at putting rivers in my desert.

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