As the day progressed and his tube went in, I realized that my tears were from a much deeper place than just our son's trouble with eating. Since he's been out of NICU, we've had such a great time at home with Jonathan. He's been healthy, except for a couple of colds. He started therapy and really started using his arms. And one area where he really excelled was eating. He fell into a good routine, nursed with very little spitting up, and grew into quite a little chunk!
Being at the hospital again, seeing all the pain he's been through, watching them poke him and wheel him off to radiology, CT scans, ultrasounds, the operating room. Even the doctors scratching their heads a few times during the week, puzzled over his numbers. And then they tell me that it would be best to get a tube in him to see if we can get some food to stay in his system. All these things, plus being separated as a family, were a vivid reminder that Jonathan is not a typical baby. Yes, he is a beautiful baby. He does things that other babies do, in part. He is our son, proudly. He is Jonathan, born with Spina Bifida and Hydrocephalus.
Waves of grief washed over me again on Friday. It was good when I realized it about half way through the day. I was crying tears of grief for the things that our son wouldn't do. Tears of grief for the countless procedures that he will endure. Tears of grief for the way that our family has changed. Tears of grief for the life that was and the life that is.
Tonight I am sitting beside a very happy baby boy once again. He is a fighter. He is ready for that new shunt. He is mad at this hospital bed and longing for his at home. He wants to hear his brother and sister running up and down the hall, so he can plan ways to keep up. He is nursing some again. He is ready to grow and learn and explore.
I have a feeling that this little guy is going to teach all of us much more than we can imagine!
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