I didn’t plan on giving birth early, or having a baby smaller than average for his gestational age, or consenting to his open-heart surgery at two months. Nor did I plan on authorizing a feeding tube insertion, or spending 203 days with him in the NICU, or bringing him home on oxygen. Thankfully, the LORD took my unmet expectations and turned them into a rewarding journey.
Danny threw up everything from an hour-long tube feed and then continued on with life as if nothing had happened. This occurred three to four times daily, but it didn’t bother him. Don’t sweat what you can’t control.
He ripped off his nasal cannula habitually and then wailed when we stuck the Duoderm back on his face. I don’t want to be handicapped by this. Don’t limit me.
He giggled and smiled even though he was practically immobile at a year old. Contentment isn’t based on my circumstances.
When the days seem long and we’re cooped up in the house because it’s flu season, or we can’t deviate from his feeding schedule, or there is not one cent left in the bank; with the right perspective, playing peek-a-boo with me can be just as rewarding as a fancy night out on the town.
When he fights his therapists or refuses to drink his formula, I wonder what I can do to make this child see that he needs this to survive. Sit back and be thankful that we are blessed enough to share each other’s company.
When he sat up at thirteen months, I felt the success of our efforts. At sixteen months when he started crawling, I didn’t care that most people’s kids are walking by that point, I was proud that he had made it that far. Support me and I will fly! Don’t compare me. I will get to my destination in my time, not yours.
Because of Danny, I embrace progress. When nothing is going right, I look back. Sometimes I sneak a peek at the worst days - where his heart beat through the paper-thin skin covering his chest. I fall to my knees and praise GOD that today is not one of those days. And when we have to rush him to the hospital at three AM because a virus brought on respiratory distress, I reach back to the good days-days when he signed “more” for the first time or days when he ate a good meal. Being Danny’s caretaker has taught me to take deep breaths and enjoy life when things are slow, because an hour will inevitably come when I will need to cling to those moments.
He is my reward for what I do. When he smiles, when he rebels, when he struggles, when he overcomes, I receive the blessing of watching it all happen; knowing that each day with Danny, whether blue sky or dreary, is a miracle.