Instead, we are buying champagne for a few ounces of weight gain. We are texting our entire families at a high five, not because it's adorable (which it is!), but because it's a huge coordination and motor skill milestone. We have nearly every toy and gadget that our therapists have. Every day that he's a little less wobbly is momentous.
The other day, it hit me that we are celebrating these wins wholeheartedly. I wish we didn't have to. I wish Ronan didn't have to work so hard. I wish I could do it for him, which is the core of any parent-child relationship. Every parent wants to step in to help his or her child. Every parent wants to make it better, easier for his or her child.
But I think I was looking at this the wrong way.
There are so many things that I cannot do anything about. No amount of internet research is going to fix the cleft in Ronan's optic nerve. No amount of therapy is going to take away his hearing loss. No amount of extra money or resources is going to take away the fact that this kid had to go through open heart surgery, take it easy with no tummy time for 2 months, and be on a low fat diet. There is nothing I can do. I am not in control.
But, there are so many other things that I can do. I can make sure Ronan has the right glasses. I can make sure I treat him as if he has no visual impairment, and give his brain the opportunity to "rewire", so to speak. I can make sure his hearing aids fit properly, that they always work, and that they go right back in every time he takes them out and disassembles them. I can make sure we are practicing his PT skills, that we work on the tasks our developmental therapist recommended, that we work on his facial nerve awakening. I can make sure every aspect of his heart is researched and understood by us.
But I can also just love him. I can cuddle with him and read his favorite book. I can take him out in the baby carrier, which is one of his all time favorite activities. I can just be his mom.
When children are hospitalized for long periods of time and undergo countless procedures, an organization called Beads of Courage makes these special warriors a reminder of their bravery and courage. They tell a story of what that child battled, of the many, many obstacles they had to overcome. When the child gets a little older and wonders what happened, they have this tangible reminder of how much they can achieve. Of how brave they are. Ronan is lucky that he hasn't had to endure long hospitalizations, or multiple surgeries, but he has had his own battles. I think I'm going to figure out something similar for Ronan, something he can look at and be proud of. Let me know if you have any suggestions!
I watched the video of Ronan again, it was good to remind myself of how much this little man has accomplished.