hospice: this is what peace looks like
When I started this blog about Asher's story, I did so for a couple reasons. (1) Writing had always been a form of therapy for me. It helped me process my thoughts and to work through what I was feeling. I started writing about Asher's story because it helped me cope with it. (2) I have felt so isolated during many steps of this journey. I wrote with the hope that one day a mom in similar shoes would stumble upon our story and feel just a little bit better knowing that another woman has been where she has and survived.
What I didn't take into account when I began writing, was that one day I would have to finish it. One day our story would take a turn and I would now have people reading our blog all across the country and they would want to know how everything turned out. I would need to continue writing through the most difficult thing I have ever had to (and hopefully will ever have to) endure, mostly for myself, but also for this incredible support system made up of a lot of people we don't even know that has rallied around us in our hardest times.
So, here we go, this is our turning point. This is also your public service announcement that Betting on Asher is about to get a lot heavier. Also, **trigger warning** to all the special needs mamas reading along.
About 8 weeks ago we entered Children's Hospital with the hopes of getting to the bottom of Asher's new respiratory symptoms. Instead, we left with "I'm so sorry, there's just nothing more we can do for you." This brain disease that has already taken so much from my little guy had reached the stage where his body could no longer compensate for his brain's shortcomings like it had been. It was starting to shut down.
I drove home that day in disbelief. We have been fighting for so long and it felt impossible for it to be "there's just nothing more we can do for you." I took the time to process it. I talked to my family. I prayed. I discussed with his specialists. I stared at my sweet boy, held his hand, stroked his hair, begged God to give me the strength to do what I needed to do. Then, on Friday, I made the call. The call that would break my heart wide open in order to protect my son's.
Hospice. Palliative Care. End of Life Support
It goes against every part of human nature. As a mom, you’re supposed to fight for your kid until your very last breathe. For the past 21 months, I have researched treatment, prayed endlessly for a miracle and looked into every possible way to help my kid. Being a special needs advocate became my identity and now I’m signing paperwork with big bold lettering, do not resuscitate. It’s just all so wrong. No one should ever have to make this decision, let alone make it for a kid before he's even really had the chance to live. But I knew he was ready. Asher has fought so damn hard for every single breath he’s taken and I knew he was telling me he was tired. There is something out there so much better for him and as much as it will kill me, he deserves to be in a place without pain. I've known from the beginning that this day would come. I knew we were living on borrowed time. This Earth was never what was best for Asher and he deserves more. He deserves healing and we can't offer him that here.
I’ve cried more than I thought possible in the past 5 days, but I’ve also felt a sense of peace that I didn’t expect. For over 2 years, starting the moment we found out something was wrong when I was pregnant, we’ve been in survival mode. I’ve listened to doctors tell me how to take care of my son. I’ve consented to surgeries I couldn't even pronounce, let alone knew it's the right thing to do. I’ve endured watching my son being poked, prodded, medicated, sedated, and then poked and prodded again. Our lives have revolved around medication, appointments and therapy. We’ve survived close to 20 admissions, countless EEGs, one unimaginably terrifying brain surgery and pain and fear at every step of the way. He’s been through too much and he’s tired. I get it. He has shown me strength at every step of the way and now its my turn to be strong for him.
So we turned to hospice to help us find some peace as we reached the "there's just nothing more we can do for you" point, and peace it has given us. For the first time in 2+ years, we just get to be mom and Asher. There will be no more hospital admissions, no more surgery, no more EEGs, no more appointments. Asher will not be poked or prodded again. Medication will be given to keep him comfortable, that’s it. We will stay home, cuddle on the couch and soak in every single second we have left together.
This is hospice. This is peace.
This past weekend, we moved back in with my parents, so I could surround him with as much love as possible. We had a priest come and pray over him and us as a family. My sisters and best friend came home to smother him in kisses and snuggles. We took walks, soaked in the bath, tried Bugle Dip (the ultimate Hau family comfort food), painted, played games and rested. It was the most perfect, heart-breaking weekend I could have possibly hoped for.
With each day that passes, my heart shatters a little more. I’m slowly watching my sweet boy slip away from me and it’s about 10000x more painful than you’re imagining right now. I’m not sure what our immediate future looks like, no one is, but I do know that I am never going to count this fighter out before he is ready. I've always joked that we are living in Asher's world, but that's really the case now. It's his story to finish. It's between him and God to decide what happens next, there is no longer a medical team that is going to intervene. When our team told us "there's just nothing more we can do for you" they didn't realize how much they were doing right then. We know Asher's not going to get better, we know this is the turn in our story, the beginning of our end. And because of that, for the first time in a very long time, I’m feeling peace, knowing that I made the best decision I could for my family and getting to soak in all my favorite moments with my guy until God calls him home.