In just a couple of days, Isaac will have been with us for three months already.
God has taught us so much through Isaac. We have watched the sadness in stranger's eyes when they look at our little guy.. As they look down to catch a glimpse of the baby, their eyes tell the story when they see a little boy who seems so limp and who is not able to look them in the eye and smile. They look with compassion, with curiosity, with grief, with love...but it is not the same as the way a stranger normally looks at a baby. They say he is beautiful--what long eye lashes, what beautiful hair..but what they don't say is "What is the matter with him?" or "Will he be okay?" He turns heads where ever he goes. I think they are drawn to him for God's purpose...and God is working in might ways through a little boy who may never utter a word.
We have had some really tough days with him. Days when I could not help but be overwhelmed and confused by him. He screamed and screamed and I felt so helpless to be able to do anything. There have been days in the last few months that exhaustion has been about the only emotion I could muster up in the midst of Isaac's distress.
We have learned about compassion in new ways as well. God, through Isaac, draws compassion out of the most hardened of hearts. I see doctors who treat kids like Isaac all the time, take an extra moment to see the child and not just the patient.. They know the reality for his life...and they encourage us to let go of trying to figure out what is going on with Isaac and just to allow him to direct his own care. Isaac is in process. His limited brain function is not in sync with a growing, otherwise healthy body. Things will always be changing for him and there will always be massive ups and downs. The doctors want us to know that there is no fixing this one...they tell us that cystic encephalocmalacia due to neonatal herpes is nearly always devastating to the brain. They don't have to tell us that with their words because we can see it their eyes when they look at him. God is stirring compassion in the hearts of so many.
There have been the good days and the bad days..but it is the days in between that can be the hardest. The days of indifference when Isaac has not been upset or crying, but absent...those are tough. Trying to make a connection with him is not always easy or possible. On those days, I find myself wanting to believe that he is engaging with me...looking at me...responding to my voice. But in reality, there has been a lot of wishful thinking involved. Some days he just doesn't have it in him to be able to attend to what is going on around him. Some days, he just needs to check out. For him, even remembering to breath can be difficult on those days. And for me, remembering that the same little boy is still inside that body can be difficult on those days.
On days like today, I don't want to lose a minute with him. I want to engage in the conversation he is having with me right now..as he looks at me with his beautiful, big brown eyes. And on days that are not so glorious, this memory will be a gift from God to help carry me through those days.