This morning has brought with it some uneasy feelings. Getty’s surgery is quickly approaching and I feel my heart pounding a bit faster. Making list after list to make sure I am not forgetting a single thing for our stay at the hospital brings its own anxiety. We were informed on Wednesday that Getty will be admitted on Saturday morning.
In my mind I was planning for Sunday and when we got the updated date, I felt uncomfortably jarred with the knowledge that we have lost one day of “regular” life.
Since SMA has come into our family, it has always felt like an unwanted guest. It has felt like a force that just kind of lingers in the house only to slowly rob our beautiful daughter of strength and that, frankly, is it. Getty smiles every day and giggles with delight in just about every environment and situation. Her mind is alert and so incredibly inquisitive. Every breathing exercise she embraces and she is such a trooper, unaffected by the noises from the big boxes that either blow air into her lungs or suck the secretions out of her little mouth. Her spirit and her soul are unaffected by this disease. She frankly couldn’t care less about who you (SMA) are, all she knows is that loved ones surround her with unconditional love and support and she is free to learn, to express, and thrive.
So I am making a list of things that need to get done before we leave, a list for things to take, a list for things we need to make sure we advocate for when Getty is admitted, a list of toys/blankets that Getty needs to feel comfortable, and one mass list that includes all of my lists. 🙂
So what can we except when we get there? Too be honest I haven’t thought about it. I am learning that the only control we have is that over our child. I am not going to consume myself with worry at this point, what would be the point? So I will say this, we will have our own room, every nurse will be sanitized and aware of her diagnosis and if we need to educate we will. We will make Getty’s environment as close to normal as possible, right down to our routine for bedtime.
Even though this is uncharted waters for our family, Mark and I are united in that this is what’s best for Getty. The g-tube and Nissen procedure will give her the ability to eat safely and that gives us peace of mind.
Since the surgery is quickly approaching, yes there is anxiety, uncertainty, and overall unrest, but we are doing this together and that in itself gives us peace. We will be in the hospital together and we will walk together.
We want to thank all of our family and friends that have offered their love and support. Thank you to the SMA community. It has been so valuable to lean on a lot of you for advice and resources. We want to thank Mom for her willingness to hold down the fort while we are gone and to take such great care of our older baby, Cooper.
So here we go, we will try our best to keep Getty’s blog updated in these next few days.