I have no real updates to share with you all about Alex. She seems to be about the same. She is still asleep and comfortable. I guess that puts her at more than 42 hours of continuous sleep right now. We continue giving medications on schedule and are thankful that she is resting peacefully. When we move her around or pick her up she opens her eyes a bit, but there doesn’t seem to be any recognition there. As of right now she is breathing more often but not as deeply. She has had a few moments of rapid and ineffective breathing that concerned us a bit, but those moments didn’t last long. Her oxygen levels are still very good. I know that we shouldn’t be focused on a number like her oxygen saturation, but when everything else seems so arbitrary, it sort of helps to have something concrete. Even so, I know that the number is just a number and it will be whatever it is. Drew and I have had much time to pray and talk and we are still 100% committed to the plan we have had in place for years… no extraordinary means.
For those of you who are not regular or long time readers of this blog or familiar with our family… in 2009 both of our girls were diagnosed with PKAN (Pantothenate Kinase Associated Neurodegeneration). We long ago decided, for both of our girls, that we did not want them to have a tracheotomy (hole in the throat to help them breath) or to be on a ventilator. We signed Do Not Resuscitate orders a long time ago, feeling very strongly that when God is ready for our girls then we will let them go. We have always held strong in the belief that their quality of life was more important than the quantity and that we would do absolutely everything we could to maintain quality of life and comfort. Everything we are doing now is in accordance with that. Emma died in 2012, 8 days after her 7th birthday. Now, here we are, holding our oldest daughter as she too is in her last moments with us on Earth.
Someone used a phrase that seems quite appropriate right now… that this seems to be more of a 10k than a sprint. That feels about right. I would go even farther and say that it feels like a 10k race without mile or kilometer markers. We keep going, but we have no idea where we are or how long until the finish line. In all honestly, that part is quite difficult. The acceptance that we have embraced is sometimes difficult to stand strong on when nothing is really happening. Don’t get me wrong, we are not wishing for Alex to pass. We are simply trying to stay strong and keep pace on this final journey with our daughter.
So how are WE doing? That is what everyone wants to know, right? There is really more peace in our home right now than I can explain. We have our moments filled with tears and sadness, we have periods of silence, moments of prayer and even periods of doing ‘normal’ things around the house. I would say that everything in our home in the last few days could be filed under “intimate”. I am so grateful to be able to say that. Our sweet Alex is nothing if not genuine and intimate, so our environment for this part of her life is very fitting. Our hearts are literally aching, but we are both quite accepting of what is happening. We are praying earnestly to God for Alex to remain comfortable. We want for her to stay asleep, as we don’t want her to experience any pain or fear. We talk to Alex about heaven, about seeing Emma again and many other things. I don’t think her physical body can hear us anymore, but feel sure that her spirit is more in tune than it ever has been. And for the most basic questions… yes, we are eating and yes, we are sleeping.