Our aching hearts

My face is swollen.  My eyes are heavy.  I have been crying for what feels like an eternity.  But in
between my tears, I have an overwhelming sense of freedom.  Today we were told that there are no more treatment options for Ty.  That his MRI Saturday night shows progressive lepto-meningial disease in three different areas.  Lou and I decided against surgery to fix Ty's shunt, and I am finally free from feeling responsible for whether or not he lives or dies.  Ty is in God's hands.

No matter how many times I swore that I leave Ty in God's hands, I was always clinging onto him with every ounce of my being.  Researching.  Fighting.  Begging.  Doing anything in my power to find a way to save him.  Finally, I have exhausted my options and I am letting go.  I may be kicking and screaming, but I am still loosening my grip because I know that I have to.  We have tried so hard, for so long.  Ty's doctors and nurses, they are so special.  They have given us beautiful. precious time with Ty and for that I am so grateful.  But he has suffered so much and I just can't allow that anymore.  Maybe this time is what I needed to learn and to find the ability to say "no more." 

I need to make one thing very clear.  Letting go does not mean giving up or losing faith or abandoning hope. I know it sounds that way but I still smile at the thought of Ty sitting up and saying something like "why are you all crying, I'm fine!"  I swear to you when I tell you that I believe this is still a possibility and I'm not even sure I would be surprised after all that has happened.  In fact... well... I'll save the latest updates for the end. 

There are three things happening here.... First and worst, Lou and I are grieving for the impending loss of our son.  We are in unimaginable pain, and we know it is only going to get worse.  I can only compare it to when I was pregnant.  We were so in love and so excited for our baby, but we had no idea just HOW MUCH we would love that baby until he was born.  It's crazy how your heart just explodes with something that is impossible to put into words.  I realize that I am currently in a place that is the polar opposite.  I am waiting for my child to die.  And I am utterly devastated beyond words and I know I will be even worse off when the time comes.... but the pain of him really leaving us will be something that is incomprehensible even to us, regardless of all we have seen and suffered through already.  I will forever be a fraction of myself.  A walking zombie.  A very, very broken person.  When I try to imagine my life without him I get lost in a fog of pure grief.  How am I going to do this?  How am I going to be a good Momma to Gavin, who deserves so much.  And what will he make of all this?  Can I take Gavin to the Bronx Zoo without crying my eyes out because I never got to take Ty?  Will his first Little League game be nothing but sadness for me because Ty never got to wear that adorable football uniform that Lou has been training him for since he was born?

Gavin at Aunt Debi's house yesterday

The second thing that's happening in our life right now is... Holy Sh*t... Ty is dying and we are here, in our own house, armed with only a suction machine, some morphine, and a phone number for an on-call hospice nurse.  In fact, an hour ago Lou called my cell phone from upstairs in the bedroom so that he could tell me he needed the suction machine immediately.  He didn't want to scream and panic and wake up Gavin, but Ty was unable to breathe because his secretions were blocking his airway.  We rushed, we freaked out, we fumbled, but we fixed it.  We were a good team, and afterward poor Lou had to hold his head and pace the floor a good twenty times before he could get back in bed next to Ty and try to fall asleep again.  We aren't sure we are up for this.  Our wonderful doctors and nurses at Memorial Sloan Kettering have urged us to come back anytime we feel overwhelmed, but we want to have him home at all costs.  I hope we can.

The third thing is, what if they are wrong again?  Lepto-menigial disease.  We have heard that before.  We signed up with hospice before.  We have seen Ty through miraculous recoveries and we believe in miracles.  Our faith has never wavered.  In fact, our understanding of unified, unwavering love for everything in this beautiful world that God gave us has only grown stronger.  Our perception of what's important in life has changed and made us so much better. 

Ty's scan showed that he was suffering from hydrocephalus on Saturday.  His ventricles were enlarged, the shunt was malfunctioning.  When the MRI showed progressive disease, all of the recent problems with his shunt finally made sense because an increase in proteins within the CSF fluid (which would happen if disease was present), or the presence of any cancer cells within the CSF (which often goes hand-in-hand with lepto-menigial disease) would change the consistency of the fluid and cause clogs.  Wouldn't you know it!  In typical Ty fashion, a sample of his CSF was sent to the lab and it was later determined that the level of protein found was very low... and the cytology (a close examination of the types of cells "floating around in there") showed no signs of cancer cells.  Ty's clinical state has been improving since we got home and his eyes that were severely crossed as of this morning were almost 100% back to normal when we put him to bed tonight.  That tells us that his shunt is working again.  And.. that maybe, just maybe, another miracle is in the works...

I can't even tell you how overwhelmed Lou and I are.  Your love and prayers and positive thoughts lift us up and keep us strong.  We receive, read and share amongst each other each and every message.  Thank you, thank you, thank you. 

Over the past week there have been a couple of "signs" that have helped me through.  I hope to have time to share them with you in detail tomorrow :)