Wednesday, 2 September 2015

Hanging on


He's so incredibly strong.

Dom made it through the night after we said goodbye. He slept in Trish's arms for a few hours, then moved to the crib.

His oxygen requirements remained at six litres - a number we couldn't have fathomed even a week ago. When we traveled to Vancouver in January he needed a half-litre. When it's life or death you adapt, just as he's done the past two years.

ICU doctors couldn't do more for him. Our goal? Make him comfortable, regardless of what happens. We know the end result, so we have a do not resuscitate order. If he ever stops breathing, that's it.

So it was off to the oncology ward here at Arnold Palmer Children's Hospital in Orlando.

Fewer lights, fewer people, fewer monitors. More privacy. Trish went to Give Kids the World Village to pack up our bags there - they then graciously agreed to deliver them to us when we needed.

Dom was grumpy, as you'd expect. But he perked up when a music therapist came to the room. I couldn't help but smile when he played Raffi's Down by the Bay. A little slice of Canadiana.

After the music session ended I tried offering him ginger ale, watching TV, dancing to music, anything. Finally I asked if he'd like to go for a ride. Bingo. We got him in a wagon and toured the hallways for an hour.

Then he started to crash again.

Trish was a 35-minute drive away.

He sat in that crib, mouth open, as I got nurses to bring morphine and ventolin. He started bending over at the waist, leaning forward in an effort to keep his overwhelmed lungs working.

"Keep fighting," I told him. "Just long enough for mom to get here and hold you."

Every few minutes, his chin practically on his knees, his left hand would shoot out. And his thumb would pop up.

As if to say "don't worry dad, I'll make it for her."

Finally, a doctor suggested he'd have better luck laying in my arms. And sure enough he relaxed there, hanging on and improving.

You're so strong, everyone tells us. We heard it from the doctors and nurses here today, and hundreds of people online. But we're not strong. He is.

Keep fighting, they implore him, as though there were a battle here to be lost. As though if he dies he will be any less strong. No, we all fight alongside him. And we are all stronger for doing so.

Will he make it via air ambulance back to Calgary? It seems doubtful, but plans for it are in the works. It was doubtful he'd make it through January, and here we are in September.

But if he doesn't, it will not be anyone's fault, nor anyone's failure, much less his.

He's strong, and everyone who knows him is too. And we will do this together.

13 comments:

  1. Your words bring tears to my eyes, you are amazing parents with an amazing child. I hope that during this deeply painful time that you can find a peacefulness in knowing that your love for Dom and his for you both will be eternal, ever lasting. We are all so inspired by the strength, grace and dignity that you all show. XOXO

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  2. I want to do something, anything for you guys.
    Just know you are together forever.
    We are all here with you guys. Thank you for sharing such a hard time, such a private journey on this blog. Dom you keep teaching us dude. We think the world of you guys.

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  3. All day our thoughts have been with the three of you. Dominic is truly a mini miracle maker! You are correct, he is incredibly strong but I would bet that a lot of that comes from the example of amazing strength that he sees in the two of you. Continued thoughts and prayers for you all and for a safe and peaceful flight home.

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  4. Prayers for your sweet little guy.

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  5. I am so thankful that you have more time with your precious boy. That little Dominic has such strength and spirit, as do his extraordinary parents. The resilience that Dominic and the both of you demonstrate every day and the love you have shared with all of us out here, truly illustrates what life, love and family are all about. I continue to carry much hope, love and prayers for your family.
    Kate

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  6. Continued prayers... I hope he improves and you are able to get home to Canada with him. hugs!

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  7. Rest Gods little angel.. Peace be with you.. May your journey home be painless..

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  8. i am praying for you ,your strength is amazing .

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  9. Sean , Trish and Dominic the three you do not know us but my wife and I have been following your story for a while now. I wanted to let the three of you know how you have touched and inspired so Many to be better and strong. You have inspired me to be a better dad a better husband and a better person. When you think your having a bad day your truly are not because there is others that would enjoy your day. Many nights I have prayed you three will get the miracle that Dominic so derserves as well as you two. I know this may be little comfort during these trying times but the strength the three of you have shown is a example to all Of us to enjoy the time with family and life. God bless and our thoughts and prayers are with you three

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  10. it seems so cruel that you all have to endure such pain. Dom is amazing, he is a true hero. praying for you that you're able to get back to canada so that you can be surrounded by the people that love you the most.

    wishing you all strength and peace.

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  11. Dominic and your family are incredible. Despite how impossible all of this must be to understand and make sense of, I hope you are able to find some peace in knowing how much love and life you three have packed into three short years and gather comfort knowing that Dominic and your family are surrounded by immense love and a community that will always be there for you. Never did I think I could learn so much from such a little person and his two exceptional parents.
    Praying for peace, comfort and a safe journey home.
    xoxo

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  12. My heart aches for you guys, Dom is such a brave little boy. If these posts are this hard to read for a stranger, I can't imagine how hard they are to write as a parent... keep up your strength for your little guy, we are rooting for you all back home.

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