I’d like to get some things off my chest. This post, while morbid, is also very cathartic for me. I apologize if this triggers any traumatic thoughts to those who read.
With the help of some friends we were recently in touch with various specialists in epilepsy and brain activity and were given a new perspective. One that isn’t weaved into survival mode, even though most of the time we feel like that’s all we strive for. Our goal is same. Her quality of life comes first and foremost. Often times that means saying no to procedures, appointments, therapies and new drugs. The ugly truth is that nothing can reverse the damage that’s been done to her brain and she will always be severely disabled, bar a miracle. Will the therapies help her reach some milestones? Possibly, yes. Will they allow her to live a life unassisted and free from a wheelchair? Unlikely.
While no one on earth can predict whether Grace will outlive us, we are keenly aware that her chances of passing away at a young age is far greater than your typical child. The thought of her no longer being with us was hardly even a headliner in the midst of all the appointments and procedures. However, Graces seizures are gradually getting worse and there doesn’t seem to be an end in sight. We are hoping for a Hail Mary with the epilepsy surgeon, but seizure freedom is looking highly unlikely. Even if she was able to be operated on, her disabilities will remain. Before this tragedy happened to our Grace, I couldn’t understand how parents with medically complex kids could choose to stop treating, or stop doing therapies. It all makes too much sense now. Sometimes, choosing against therapies, surgeries, drugs or even life is the best option for quality of life.
Grace is still at a weight where maneuvering her is easy, but the heavier she gets the harder it will be to move her. Being bed ridden opens the risk of pressure ulcers, pneumonia, deep vein thrombosis, UTIs and a plethora of other illnesses. Given that she is medically fragile, a simple illness could be fatal. SUDEP (sudden unexpected death of someone with epilepsy) also is a real threat to Grace. One of the specialists even gave us a life expectancy number and it was not in double digits.
With all this information and a new perspective, I cherish her even more. It’s an outright miracle that she is alive given the attack on her brain over a year ago. Any time doctors look at her MRI images their response is always the same..”wow, this is absolutely devastating.”
Each step I take into this new life with my daughter brings out more clarity in what needs to be done for her. Instead of searching for a cure that doesn’t exist, we will make a downshift in gear and give her what any kid deserves. Happiness. Believe it or not there are glimpses of joy to be found in hospitals and therapies (maybe I’m just insane) but I know my little girl would be much happier trying to reach the sky in the swings at the park with her grandma, or her dad. Giving and observing her joy is the elixir from which I drink to get the fortitude to keep fighting for her.
I’ll always linger a bit longer when I put her to bed, hoping I’ll catch another smile before saying goodnight. I’ll be more vocal about anything at all around her, because I know my voice makes her giggle. What felt like a burden before will feel like a step towards keeping her with us longer, how ever long that may be. I’ll try my best to be as mentally present as possible so that I can cherish her light. This doesn’t mean we are giving up on therapies and medicines, it just means we will be more realistic about what her life can be and make the best decisions possible with her happiness and comfort as our first priority. If the time should come where she is prematurely taken from us, I’d like to know that we did everything possible to give her the best life possible with what we were given. I’d like to think she would look in on us from time to time and be able to see a life outside of hospital walls, therapies and being drugged out in a pharmaceutical haze. Every time she looks into my eyes and I see the light of recognition followed by a sly little grin and a chuckle, my heart swells and swells. After all, every day she’s with us is looking more like the greatest gift we’ve ever received.
Sometimes my heart gets so heavy that I need to set it down, and I’ll be forever grateful that you all have given me a safe space for it to rest. Thank you for being here.