From some of my earliest days into being a parent, my journey has included not just the typical joys, love and challenges that are inherent to the job, but I’ve also had my fair share of grueling, heartbreaking, impossible decision making on Elena’s behalf. I make decisions for her that she has no say in, that are physically painful for her and unbearably painful to my heart, decisions about her quality of life, her body, her education, her daily life. Not one is easy. They all weigh on me.
Tomorrow is D-Day, or rather BP-Day. We have made the decision to (give, install, put in…I don’t know the right word) a Baclofen Pump in Elena. Without getting too much into the medical details of this, a device will be implanted (similar to an insulin pump) into her abdomen that will deliver medication that helps to relax her nervous system, specifically the nerves that insist that her muscles stay rigid and disfigured, through a catheter directly into her spine. It has been a years-long process to arrive here, and though we feel it is the right decision for her, it doesn’t make it an easy decision for us. Choosing this path for her has felt impossible to me for years, and now that it’s here I feel only a mix of heartbreak and hope.
We are hopeful this will give her tense, little body the relief it needs, improve her quality of life, and prevent future complications as a result. We are hopeful that this will be a solution to concerns and problems we have been troubleshooting for years. We are full of hope, and yet, I grieve for what I can’t help but feels like another concession in a long line of loss. Yes, we hope to gain with this device, but it isn’t without sacrifice.
Her surgery is at 8:30am tomorrow and, as always since the very beginning, your prayers are so meaningful and sustaining to us. Thank you, friends.