Today marks the day when I first started raising a child with a life threatening, chronic illness. Many people, regardless of what illness it is, always say, focus on the person, not the disease. The person is separate from the disease. This is difficult to do, as a parent, because many times our children are the embodiment of our hope, our future, our fears. When you have a child with a fatal illness, it is difficult, at times, to look at them and not see the face of the disease. Each cough can be a reminder of the next medication, the next breathing treatment, the next doctor's appointment, the next meal, the next G-tube feeding. Some days it's business as usual, and some days it's overwhelming. It is heartbreaking and rewarding. It can feel like I am fighting against the waves of mucus and infection, and it can feel like we are making progress in keeping his body healthy.
Today marks the day when I started raising a child, my son. I always knew I'd have a boy. Before he was born, I had an image in my mind that we'd be friends. Exploring nature trails, looking at bugs, catching frogs. The day he could finally walk, I'd take his hand and we'd walk as far as his little legs could manage. Taking him to the park and watching him run around was so thrilling. Watching him observe other children, learning to socialize, and make friends. Teaching him to play catch was one of our favorite activities. Being outdoors, and both of us trying to get better at catching the ball with our gloves, and not our faces, shins, etc. I knew very early on that throwing a ball was something he couldn't live without. It has been such a joy watching him develop in baseball. His passion and motivation is always there, regardless of how he feels. He reminds me a lot of my younger self, always with a smile and ready to laugh off the days troubles and just play. I am so proud of the young man he is developing into.
Happy 1st decade birthday Azer!