Reflecting on Hospice

Tonight I am lost.  I feel foolish.  I am sad for a baby boy that is on hospice care after fighting AT/RT for almost a year.  Sad isn't the right word.  It is so much deeper than that.  It brings back a flood of memories from when Ty was in the same situation.  His inability to sit up.  His inability to swallow.  How he eventually stopped tolerating food or water.  His "smile of the day" despite it all. 

I saw a post on a private facebook page that I am a member of.  It is a site for parents of children with AT/RT (the same tumor type that Ty suffered with).  I remain active there because I feel that I have a lot of knowledge that some of the other parents going through this might benefit.  That being said, it is very hard to watch the posts and listen to the conversations among all of these families struggling with treatment.  I recently saw a post from a mom that described symptoms I was all too familiar with.  They were trying to figure out what was wrong, what kind of virus the baby was fighting, but I knew in my gut that it was radiation necrosis and after days of discussions with doctors, radiation necrosis was indeed the outcome.  So unfair. 

A post came up today that inquired about signs when death is near.  It was a simple post asking parents who lost their child to share the signs because this father was worried.  I recognized the name of the dad who wrote the inquiry and didn't recall seeing any bad news about his child regressing on FB recently, so I sent a private message.  I skirted around the issue, asking if I missed anything about his son's condition.  I shared a very basic overview about Ty's last days (how he slept all day, how he was running a very high temperature, how he developed bed sores) but also insisted that I hoped his son was nowhere near that. 

(paraphrasing here)
"He is getting over being sick, so maybe that's all it is." said his Dad.
"Oh, I'm sure that's all it is.  Ty had so many severe ups and downs, I will pray your baby boy starts to improve soon."
But then I thought, "I should mention how Ty stopped eating."  So I did.  I told the dad that it was a huge sign when Ty couldn't tolerate food anymore.  That he threw up more and had no tolerance, even for water.  I realized that this family and their experience sounded familiar to ours.  They don't know what to expect, and neither did we.  Finally, I asked, "what kind of medical help do you have?"

"We have had hospice for a few weeks now. They come by once a week until we need them more." 

Oh no, how did I not realize this!!!  I don't know what he said after that because my head started to spin with devastation.  Why was I surprised???  The man was asking about how he can tell if his baby is dying, and here I was telling him he was probably just getting over a virus.  And I still hope he is!  But how did I not realize that his poor baby is probably on hospice care?  That he's vomiting more often because he can't tolerate his feeds anymore, just like Ty.  I haven't changed.  I maintain hope even when a good outcome, the right outcome, is impossible.  I don't regret that, but I do regret not being more straightforward with this family.  What is happening to their child most likely is the beginning of the end.  I want to call them and cry to them and tell them that everything will be okay and everything will never ever be okay at the same time. 

I'm sorry to reflect on these sad events in such detail that may be difficult to read, but tonight I have to.  Sometimes I need to write about all of the memories and pain that is swirling in my head in order to help me find peace. 

When we were sent home on hospice care the first time, in December 2010, we didn't expect Ty to survive more than six weeks.  Lou and I talked privately about our wishes, and we decided that we never ever wanted to leave Ty's side.  That we wanted to be alone with him when he died, and that we would simply drive to a crematorium (what an awful word) with Ty in my lap, wrapped in nana blankie, because no one else should touch him.  He was just a little tiny baby.  We couldn't imagine anything else.  Well, as you know he didn't die at that time.  Instead, SuperTy defied all odds.  He broke all the rules.  He got better without any real explanation.  He gave us almost two more years of joy and laughter through tears and I wouldn't trade that time for anything. 



Say what you will... this kid wasn't going anywhere :)

When Ty was sent home on hospice care in September 2012, it was different.  Lou and I watched Ty suffer way too much for way too long.  We knew that he was going to die, but never stopped praying for a miracle.  Lou, my amazing husband and the best Daddy in the entire world, had the strength to make arrangements weeks in advance.  He was the one who asked all of the impossibly difficult questions.  He had the conversation with me about buying a casket.  Do you know why we did that?  Because the only other option was a pine or cardboard box for cremation, or, if I wanted to hold him in my lap I would have to do so while he was in a body bag.  That is the law.  There is no peaceful way to do it, where I could hold him in my arms until the very end.  You can't just drive your dead child to a crematorium and see him through to the other side like we imagined.  So, we bought a casket because we wanted him to travel to the crematorium in something comfortable.  We filled it with so many beautiful tributes from all of the people he loved the most.  Lou and I traveled with him in a Hertz, Lou helped with transporting Ty in and out of wherever we were going, and we were there to press the button that lit up the incinerator.  It was the most horrific and painful goodbye imaginable, but I am at peace with it.  I still can't believe it even happened.  It's like it wasn't real.  We stood there, we watched his casket roll into the incinerator, and somehow in our semi-state of consciousness we managed to push the button together.  Not because we wanted to, God no, but because we didn't want anyone else to.  Can you imagine?  Making the decision to do that to your child? 

I do live with one awful, disgusting regret that haunts me every day.  I haven't shared this with anyone other than Lou.  I guess tonight's post is sort-of a cleansing for me. 

My last interaction with Ty when he was conscious was terrible.  I will never ever have the chance to change that and it breaks my already broken, bleeding heart.  He was whining for me very early in the morning and I told him he needed to sleep another hour because it was too early to get up.  I was grumpy and I wasn't nice to him about it. I had only fallen asleep probably an hour or two before he was waking up and I was losing my mind.  Obviously, I never imagined that would be my last interaction with him before he slipped into unconsciousness.  Remembering that, I can hardly even keep writing through my tears.  I asked Lou to please get up with him instead, and he brought Ty downstairs.  When I came down an hour later, Ty had just fallen asleep.  He didn't wake up again and I will never ever forgive myself for that.  I yearn to talk with Ty one last time more than you can imagine.  I need to tell him how much I love him, how sorry I am, and I need him to tell me that it is okay.  That he is happy.  I don't want to talk to the empty air anymore.