Tuesday, 25 August 2015

Note from mommy #2

Hi baby. 

Mommy wanted to write a quick note to you. I'm sitting in the rocking chair in your room in the dark, cause you don't want to be left alone. You have never been afraid of the dark before, but then with so many machines on, you have never really been in the dark before. It also shows that you are growing up. And it breaks my heart. Not cause you are growing up, but because it makes me think of all the things you will never get to do. 

Through everything we have always held up hope that you would break the mold and expectations and survive. I always thought you had to survive because you were meant for big things. You have a way about you where you can get people to listen to you, do what you want and fall in love with you and you can't even say any words. You were our miracle and I can't imagine how you could just be taken from us. It's not fair. I know the world is not fair, but this seems so far from being fair that it's not possible, yet here we are. 

Your latest blood work tests are bad. There is no other way to say it. There is nothing encouraging about them. The hope that we have held on to is barely visible right now. It is taking everything I have to not curl up into a ball and stay that way. But right now you are here and I need to focus on that. There will be lots of time to curl into a ball later. 

I had a thought the other day, that after you die, I will no longer be a mommy. There was a long time where I never thought I would be a mommy and to now think I may not be a mommy is devastating. Since you were born, that's all I've been and I don't think I can be anything if I'm not your mommy. You are my life and I can't survive without you. 

You have fought so hard and held on longer then any of the doctors thought you could and you have done it with a smile. You smile and laugh so much. Everyone smiles around you. Even when you are throwing a fit, I have to try to not smile. 

You are an amazing boy and loved by so many. I know many people's hearts will break when you die. There's that word, I hate that word. It is not a word that any parent should ever have to use when talking about their child. No child should ever die before their parents. Sigh. 

I am rambling and I am sorry. I just wanted to tell you that I love you. I hope with everything that you know how much you are loved.

You are my baby and you will always be my little monkey. 

Kisses and snuggles.

(Note from Sean: Trish wrote this months ago but it's equally true this week. His cancer has become worse than ever and we are holding out hope we'll be allowed to go on our wish trip Saturday. Tests happening Wednesday. Stay tuned.)


  1. Dominic, you have shown the world what strength and courage really mean. You might not know how to read those words - you do know how to live them. You are a shining star in the lives of your Mom and Dad and I know you feel like you won the lottery with getting them as your parents. They think the same of you. Thank you, and your parents, for letting us have a glimpse into your world. We have fallen in love with you, and, because of you, great things will come to pass.

    Sean and Trish, I am sorry. Sorry that you have to experience the unthinkable heartbreak. You have shown strength, courage (no wonder Dominic lives like that) and grace through this incredibly sad time.

    I will hold all of you in my prayers and sending you tons of positive thoughts and healing light so that you will have your wish trip.

    You have many more memories to make. Hug lots, smile lots, laugh lots. Breathe. Remember to breathe.

    And f)&*'n cancer.

  2. Great words (L.Scott). I just want to add to them, I think when you earn your Mommy badge, you get it forever, FOREVER. It never goes away. You will always be a mommy, it won't be like it never happened, it's yours, you are an amazing mommy and you can curl into a ball, later. Take the time to read Sean's amazing blog and comments, so many people love you (which is weird when we are strangers, but whatever), we love you, we love Dominic and we know Sean will keep Dominic strong forever too. Read it now, read it later, read it months or years from now. I'm sad this is what is. Wish trip or no wish trip, keep close to Dominic, he won't care if he is in Calgary, Med Hat, Florida or Timbuktu, but he will care about you being near by. (I still hope he can go, but he will decide that, not the doctors, it will be him) The final journey is the hardest, you are doing great, really great, keep your heads up, smile, laugh, love and hug. Dominic is ♥ and yah, F&#* cancer.

  3. This took two days to read, as it's such a powerful, heartbreaking of letters. The whole perspective of your situation, and losing your role as Mommy, is hard to understand how something like this could ever happen. Especially to such a great Mom like you.
    But you'll still always be his Mommy, and you are a darn good one.
    How it's possible that Dom is always smiling, and makes so many other people happy while he is going through the worst time, shows he must have been raised by someone really special.
    The sweet posters that you attached to his hospital door, etc and all of the encouragement that he has been surrounded with have shined through in his personality.
    He has been so loved!! He is truly a special boy, part of a special family, and all of you have really made a mark on the world.
    Prayers, hopes and wishes you get to do everything in this upcoming time period to make as many memories with your sweet baby as possible.
    A lot, a lot of people are rooting for you!

  4. You will always be a mommy - with a little boy in heaven.

  5. As many times as I have read this blog and sobbed, the most heart wrenching post for me was Mommy's first note. Sean is incredible with these blogs - articulate, informative, emotional, balanced, light hearted at times....they are amazing. But as a mother, that first note ripped me apart and this one just destroyed me. You will always be a mother - nothing can undo that. For some time I have worried about you Trish. How you would be able to go on, to find purpose if you lost Dominic - he has been your everything for almost 3 straight years, intensified by almost two years of medical treatments requiring your constant presence and attention. I can't imagine how awful this is for you. He has been such a gift and we all thank you for sharing your special boy with us. You are an amazing woman and an amazing mother and there is nothing in this world or any other that can change that. Continue to draw strength from his smile and nurture his journey with your embrace. There is nothing more important than mom.

  6. You will always be a mom, just as Dominic will always be your son. Nothing can take that away.
    You have given him a life filled with love. He knows he is loved, and that's the greatest gift anyone can give a child. He is happy because it's who he is, but also because he's had the love of two strong parents by his side through it all.