Surreal

Just a couple of weeks ago I randomly came across a blog of a family that I cared for 2 years ago that impacted my life in such a big way. I only cared for them for two nights, but I have thought about them and prayed for them every week since those nights in January. I took care of their precious baby boy who had SMA, a terrible neuromuscular disease. He passed away the second night I took care of him and I will never forget his sweet parents and family. His family reminded me so much of my own, maybe it was the relationship between the parents reminded me of Jonathan and I, maybe it was their faith in the Lord, or maybe it was because their little boy and Claire were the same age. Or maybe because the Lord used this sweet family to speak truth to my fears. Being a PICU nurse and mommy is not always a good thing, we fear the worst and at times expect the worse. I had been struggling with these fears at the time of meeting this family, who was in the midst of them. What the Lord taught me in just those two nights of caring for this family was that He would always hold me no matter the situation. I had always known that, but never seen it. Then I saw God hold this family as their baby boy passed away. The strength that he gave them through their hurt was such a testimony to me of God's faithfulness. While getting Harrison worked up this year for a possible SMA diagnosis my mind wandered to this sweet family. God used them as constant reminder of encouragement that He would always hold us.

The next weekend at work I was sitting down charting towards the end of my shift and a doctor walked up to me and asked how James was doing. My first thought was my patient's name tonight is not James. Then I remembered she was one of the doctors that oversaw Harrison's short hospital stay and she was asking about him. I got to tell her how great he was doing. She said she had been following his chart and then she asked me "Do you know what we all thought he had?" and I responded "SMA?" and she said "Yes." Wow, that was a surreal moment. I had known this all along myself by his symptoms and the tests they ran, but to hear it verbalized was breathtaking. I remember Jonathan being somewhat frustrated that we were admitted because Harrison was "fine." I remember not wanting to tell him all that I was thinking, and now with confirmation that the doctors were thinking the same thing.

At times I find myself so overwhelmed with thankfulness that my heart wells up in my throat and my eyes begin to brim with tears, and if I am alone I just cry. Cry because I am so thankful that was not the road God had for us to walk down. That it is a distant, but sweet memory. That as I read the posts from 6 months ago I remember that mommy with all of her fears, but now get to see what God has taught her. I get to hold onto the lessons learned, and also have each day with my sweet Harrison. Never will I take for granted a day or milestone that he reaches, but savor each of them.