Feeling Heard: Sharing How a Pediatric Hospice Would Impact Our Lives

On Friday, August 11, 2023, I had the honour of being asked to speak at the Rotary Club of Hamilton's Imagine Summer Gala with all the proceeds going to a project very close to my heart: Keaton's House, a Pediatric Hospice being planned for the Hamilton, Ontario area. It was an incredible event with over 450 people attending the gala in support of the hospice, which will provide both respite care and end of life care. How there is no pediatric hospice for a hospital the size of McMaster Children's Hospital is mind boggling, so to see the dream becoming a reality is a true joy, and a tremendous relief.

This was the largest number of people I have spoken to so far, and it was so powerful to have a room become absolutely silent as everyone turned from their scrumptious desserts to turn their full attention on the podium. In truth, the tears flowed as I walked from the podium, through a standing ovation, back to my spot in the room, and was immediately surrounded by hugs from the individuals at my table - almost all of whom I had just met that night but they held me as the applause continued. It was such an incredible feeling of being heard and making a small difference by sharing a piece of my heart.

So in the hopes of further sharing our hopes and goals, I am going to post the video that was taken for me by an incredible friend, fellow Medical Mama, and Leader in the Medical field. I will also transcribe my speech below for those who wish to read, instead of listen. Thank you for stopping by to check it out.

TRANSCRIPT OF SPEECH:

"Thank you very much. It is an honour to be here with you tonight to share a little bit about my family and the impact that having a pediatric hospice in Hamilton will make on our lives.

I am a former Teacher and former Professional Learning Coordinator at a National non-profit. I am a wife. I am the youngest daughter of 3 who is now the full time caregiver for my elderly mother dealing with the later stages of Alzheimer's. and I am a mother to 3 incredible children -not that I'm biased at all.

Our eldest actually came to my family at a few months of age as my parents foster child who was not supposed to live to the age of one as he had a brain tumour entwined in his optic nerve. So truthfully our history with Mac (McMaster Children's Hospital) goes back several decades. He is now 26 and the blind child cleans the windows at church - so truly miracles can happen. He came to me when he was a teenager and said he was done being my little brother, he wanted to be a big brother - so he calls my Mom, Mom, calls me Mom and talks about his two Moms and messes with everyone's minds which we love because that is what life should be about.

Our middle child is our daughter who to me is the definition of resilience and true beauty, both outwards and more importantly in my opinion, inwards. She is 11, turning 12 and going on 30.

And then there is our youngest, William, who after a decade of fertility issues was a miracle and a complete surprise from the beginning. In fact, if one of my co-workers had not dreamt I was pregnant, and I had not taken a test as a joke, who knows how long until I would have realized the joke was on me?!

I had an amazing pregnancy, normal, no problems. Our ultrasound on our term due date was perfect. It showed a healthy, very active, energetic, over 10 pound baby boy, who I had already nicknamed Liam.

Two days later, we went through one of those devastating, almost unbelievable birth traumas that society likes to think only happen in t.v. shows like Call the Midwife or Downton Abbey. In fact, it is still very unclear how either one of us are alive today, and the truth is, that day, my sweet Liam did die that day.

But... my amazing and incredible young son William was born and for the last 5 years we have been on one heck of a roller coaster. We have had to fight the system to allow him to have the chance to live. We have learned to do tracheostomy tubes, which is a tube in his throat that helps him breath, learn feeding tubes. We have learned he is a spastic quadriplegic, which means it is hard for him to make any controlled movements, he is non-verbal, deaf and blind, he is in a wheelchair, we have lost track but it has been well over 400 days we have spent in the hospital with him, in and out all the time.

But, he has come so far. He is going into his second year of school, he has friends of his own and for any of you that know children who have extra special needs, that's huge. It's amazing when you actually go out into the community how much bias and prejudice there is against our children and how difficult it is to find a friend - and he had his own birthday party this year with his own friends where they could all lay there watching t.v. shows on a big screen projections and chill together - who doesn't love that?! He uses a Brain Computer Interfacing machine where he can turn things on and off with his thoughts and he has a switch on his wheelchair to turn toys on and off. He's also learned how to hold his breath to set off all his alarms in order to bring someone over. (That one's not my favourite and I have also learned that if I call him on it, he breaths just fine).

Yesterday when I climbed into his bed in the Pediatric ICU at McMaster he actually took off the heated humidified tube on his throat, a tube that gives him oxygen and humidity, he took it off himself and tried to stick it on my throat - yeah he is non-verbal, that doesn't mean he doesn't get his point across. "Mom, I'm done, here, you have it!" That's why we say in our family, "where there's a William, there's a way!!"

I'm not going to lie, he is worth it. I have no regrets. Dr. Lysecki was there with us from the beginning, we had to make that conscious choice to fight to let our child live. If he showed that he was wanting to and he showed capability then we were behind him one hundred percent, but we had to fight, and we did. I have no regrets. That doesn't mean it is easy.

I had to give up my job, which means giving up a promotion that was coming alone the way, a really nice salary, medical benefits for the whole family, and when you look at the future, I also look at the future, I also lost my pension. So great question, who is going to take care of me in 30-40 years, because my healthy son is gone.

William now needs 24/7 care, and in case you didn't know there is a real nursing shortage out there, especially for good nurses who are going to stay awake all night and me not wake them up. There is no such thing as easy travel. If any of you have run out to the store to grab a bag of milk because your teen or family member has drank all the milk and all you want is a coffee, yeah not in our world. There is a lot of gear, I can't drive alone with him because I have to have a second person with him whenever we go somewhere, let alone dreaming of vacationing anywhere.

Respite is hard to get as well. When I had surgery a year after he was born, it was relatively easy to get friends and family to come and hold him as he was small, cute and cuddly. But our children grown up. They get bigger, they get harder and people get more afraid.

Last fall, I got sick with covid, and my immune system was shot from all the stress on my from full time caregiving, so I got sick really really bad. My Mom, eldest son and daughter also got sick and there I am hardly able to move trying to take care of them, and there's William, who thank God had just been vaccinated a few weeks before and my husband who had Covid a month before. But my husband can't go 24/7, sorry but we are human. He's also an accountant and has to get work done, so what are we going to do? I called Mac, I was actually desperate for help, and I was saying "Please, I just need you to take William just for a little bit. I can hardly breath and hardly move. I can hardly do anything. I'm trying to take care of these other three and I just can't even make it up the stairs to go and help my husband with the care of William, let alone expose them to all we were struggling with." Unfortunately, this was a time that Mac was struggling and they were over capacity - so the answer was no. So I called the LHIN, which for those who don't know, is the organization that makes the decisions on how many hours of nursing and when a nurse can or can't come to our homes, and the answer I got was "your son is too complex for us to help".

Okay, should we talk about mental health?! No, we don't have all night. But that definitely hard. I broke. What am I supposed to do? This is my baby. He is bright, blue eyed amazing child who seriously just wants love. You know how some kids expect things? they want allowance, new toys? He wants you to hold his hand. He wants you to hug him. He wants you to love him. He is just pure love. But I couldn't help him, and the system couldn't either, it was broken.

So this brings me to tonight, to tell you my hopes and dreams, and not just mine. This is from many Medical Mamas and Papas that I asked.

We dream of a place built FOR our children, a whole environment designed AROUND and FOR them. Not for me, not for you, for them.

We wish to have a place where we can find community - those who understand us without judgement or pity. One of my favourite quotes is from a Robin William's character in a movie called World's Greatest Dad, which ironically is about a man whose son dies..."I used to think that the worst thing in the world was to end up alone. It's Not. The world thing in life is ending up with people who make you feel alone." and we are out there, and my son has a very visible disability, quite often I am alone. So I am searching for my community, and that is what we want.

We hope for a place where we can make memories that we will treasure all the days of our lives.

We are longing for wrap around services from beginning to end, whether it be transition to adulthood or the more like end of death.

Because I am praying, every single day of my life, because my son is one of the most stable and yet one of the most fragile children on the palliative team, that opposed to his violent and cold entrance to this world, that my beautiful boy may have the peaceful, loving passing from it that he deserves. Thank you for being here tonight to help make our hopes and dreams a true reality.

Thank you. "