I haven't written anything for quite a stretch once again. And if I'm being really honest, I know why.
What I'm about to write is going to be the hardest bit of truth telling I've probably ever done. For many reasons. And my fear is (I actually have many fears but this is one of them), that if I don't write this, I will never write anything again. Getting this out, I hope, will feel a bit like unclogging a stopped up drain. Once I get rid of the icky gunk running in circles inside my own head, I'll be free to write about other things once again.
Let's hope my theory is correct. With that said, here goes nothing:
Nearly two years ago Tess started acting like she wasn't as engaged in the world as she used to be. She didn't react to her people in the same way she always had and she didn't seem super "with it" some of the time. Blake, who was her at-home teacher last year, said to me on a couple different occasions, "Mom, I don't think Tess knows the things she used to know.", to which I would promptly reply with, "It's because you're her sister and she's just being a diva for you!". This was also my excuse for Tess not interacting with people as much; I would say things like, "Oh, she's just mad at you because she hasn't seen you in a while.", or, "She's just mad she's not getting her movie right now.", excuses along those lines.
Then, one day something hit me and I began to really watch Tess and her interactions. And I began to think back on the ones I'd been making excuses for, and the one that I could not longer ignore was watching her lack of excitement when Ellie, her Superlove, was with her. What I noticed was that it took an awful lot of time and work on Ellie's part to get even a small smile or giggle from Tessie when, all of her life, it would only take seconds. When this hit home for me I called Ellie and asked her if she had noticed anything "off" with Tess. Her response was immediate and everything that I had been trying to ignore for a long time. She said, "Mom, I noticed it over a year ago and have already cried my tears over what's going on with Tessie now." I asked her why she hadn't said anything to me even though she'd heard all of my pitiful excuses over the past year and she said, "Because I think this is a progression of Tess's Rett Syndrome and there's nothing we can do about it so why burden you with something you clearly didn't want to see and couldn't do anything about anyway?".
God love our kids and their love for us, am I right?
Long story short, Tess has had some pretty significant cognitive decline over the past couple of years. She seems disengaged a lot and even scared at times. She can no longer use her eye gaze device without getting very frustrated and even simple choice questions can be hard for her now, though we still always offer her choices when appropriate and will only make a decision for her when it becomes obvious she cannot. Even her giggles are few these days and when we get them, it's almost like they're coming from someplace distant. I would describe it as though there's almost a veil between Tess and the world. She's there, but not all the way.
Once I finally admitted to myself what was happening with her and had a long talk with Charlie about it and confirmed that he also had been noticing it, I scheduled an appointment with her neurologist and Ellie joined us for it. Her neurologist confirmed that she also suspected that is was a progression of her Rett Syndrome and that it would continue like this until Tess either simply was "gone" all the time mentally, or passed away. She likened it to an older person with dementia. That it would most likely progress somewhat like that.
I was beyond heartbroken and furious for Tess. After everything this kid has been through and overcome only to have to slowly lose herself and all of the skills she has fought so hard to gain seemed unbelievably cruel to me.
Next we called her "team" and had a Zoom meeting with her pediatrician, pulmonologist, neurologist, palliative care team and "Dr Jen" because new decisions about care and specifically, end of life care, needed to made.
During this meeting we decided that Tess would not be given CPR or be intubated should she get sick enough to require either of those things. Tess would not be given any different or new seizure meds because the risks now outweighed the benefits and there most likely isn't a med made that will control them regardless since she already has tried so many and they aren't controlled now with taking over 30 pills a day for them. We also decided that Tess would not be taken to the hospital if she got Covid because they felt like her chance of surviving it, even with the vaccines, would be very small and having her die in an ICU room with possibly only one parent present was a hard no for us but that she would go into the hospital if necessary for her "normal" illnesses. Those decisions were made as a team but, as her parents, Charlie and I were devastated to be making them since, in the end, despite recommendations they made, the final decisions were ours alone to make.
About a week or so after that meeting, her pediatrician called me and said he needed to see Tessie in person (simply because he hadn't in a while) and offered to come out to the island rather than make us bring her to him on the mainland (that was unusual in the extreme but would make more sense later).
He came out near the end of October this year and stayed for about three hours. We discussed everything that we had previously talked about at our big Zoom meeting with everyone as well as about what the neurologist had said about what Tess's future looks like cognitively.
I then asked him, "At what point do we not take her to the hospital for even a pneumonia or, say she has a seizure that we cannot stop? Given what we now know and that her future is going to be more and more of her losing her skills, losing her memory and losing even knowing who we are, when do we decide to say that we've put her through enough if we're saving her only so that she can continue to decline?
In other words, at what point are we keeping her alive for us rather than her?
After a very hard talk (which he knew we needed to have and would be much better had in the safety and comfort of our own home than in his office which is a big part of the reason he came out I suspect) and many tears, we, as a family, have come to the decision that Tess will not go to the hospital again. She has earned the right to stay home and not be poked and prodded anymore in the name of making her better. Because there is no "better" anymore. There is only varying degrees of losses upon losses coming her way. We will fight with meds and breathing treatments here in our home if and when needed, because god knows our home has almost all of what the hospital can offer her anyway at this point, and then we will leave it up to Tess and God to decide when it's her time. And when I told Tess that she would never have to go into the hospital again, she seemed to understand me and was...relieved. (as I said, she is aware mostly but not as much as she used to be and not all the time, so I picked a day to talk to her a little about it when I knew she was having a good day)
I have said that I would never give up on Tessie and that I would always ALWAYS advocate for her, but now me advocating looks a whole lot different. It's saying NO when I used to say yes. And to be very honest, it felt like I was almost betraying her until all of her team told me the thing I needed to hear, they told me that we were showing just how much we love and respect Tessie by recognizing that her needs have shifted and we had to shift with them. And we did.
We don't know how much time we have with Tessie. Her seizures are getting scary (heart rate going way up and then waaayyyy down quickly as well as a lot of breath holding now) and, of course, there is the fear of covid among other illnesses that she could get. What I do know is that one should never underestimate Tess's Warrior Spirit and so I'm leaning hard into my Faith in God and my faith in Toodle Bug.
In the meantime, despite my fears, my NO to the medical interventions I used to say yes to is the strongest show of love I can give her now.
And Tessie deserves decisions that come from a place of love, not fear.
