No one wants to hear those words associated with their child.
Yet, since we received James’ diagnosis, we have known that this would be his road. He will always lag behind other children. Even knowing this, every day is a revelation. Every day, I have to remind myself that he’s not going to do things on the timeline that I experienced with his sisters. He is still very much like a newborn in his habits. He’s been sleeping heavily for the past 48 hours. He does this. He will have spurts of very awake times, but he will also sleep for hours and hours – sometimes most of a 24 hour period.
Today, he woke up several times and we had a couple hours of eye contact and some small noises this evening. We worked on stretching out his clenched fingers, lifting his head, and other exercises his various therapists have recommended. I gave him some sensory input with a super soft, fuzzy Taggie blanket from Target, and we worked on him holding some plastic rings. It was so interactive, and I realized during it that my soul was absolutely thirsting for that interaction.
Raising children is hard. The days can be really, really long. Infants are sweet and cuddly, but one thing that makes them so wonderful is watching them grow and achieve milestones, watching them bloom into little people. For 3 months, I have watched my sweet babe growing slowly, and I have been waiting. I am still waiting. Waiting for the first real smile, the first real babble, the first time he reaches for something, the firsts that his sisters had already achieved at this age.
I am in the desert, and the oasis are few and far between. But when I find them, they are so beautiful that I am filled. And I can go back into the desert and wait again, wait for that next oasis, that balm to my mother’s soul – the bright eyes of my son staring back into mine.
Loving James 