Ezekiel recognizes every time he sees something different at the Ronald McDonald House. So much so that mom and dad (Katie and James) went out of their way to get a couple new stools for the play area because Ezekiel very vividly remembered the red play pieces and wanted to have them in the small play kitchen just off of the real kitchen where families cook their meals at the House.
It’s an amazing thing to see Ezekiel’s connection to the Ronald McDonald House. After a recent visit with his grandparents in Ontario, and not wanting to leave grandpa’s side, mom was able to convince Ezekiel it was time to go because he would soon be seeing his friends at the Ronald McDonald House.
At four years old, he hasn’t experienced the standard milestones like most kids his age. Far from it. And his parents haven’t lived the normal life that comes with having a strong-willed young son.
It started when Katie and James, both teachers, accepted positions overseas in the Middle East. They knew they were expecting but were assured that travel and relocation wouldn’t be a problem – and it was quite early in the pregnancy when they began their exciting adventure.
As testing started happening across an ocean – they were told their little boy was not developing at a normal rate – he was developing quite slowly due to a blood clot preventing appropriate nutrition from reaching him. On December 10th they went in for an ultrasound (one of many) – and were told you’re having him right now.
Ezekiel was born at 27 weeks, weighing only 1 pound, 9 ounces, small even for being born at 27 weeks. His first 111 days were spent in the hospital.
Mom and dad brought Ezekiel back to Canada and settled into new positions in Dawson Creek once he was okay to be released from the hospital.
At ten months old, Ezekiel was only weighing 10 pounds, and as much as he was eating, he wasn’t gaining any weight, at points he wasn’t even maintaining his weight.
In September of 2012 Katie and Ezekiel made it to Edmonton where he was admitted to the Stollery Hospital and mom came to stay at the Ronald McDonald House. Dad needed to continue working and made the 700 km commute every weekend to be with his wife and son.
“The scariest, worst news I ever got, I was all alone because James was at work in a different province,” says Katie, “The cardiologist came in, and after 5 weeks of not knowing, he told me my son had a serious heart condition”.
Tests revealed that Ezekiel’s heart was working twice what it should be in the human body, and if this wasn’t treated quickly – a heart transplant would be in his future.
Once to twice monthly visits to Edmonton became the new normal for this family as medical professionals worked to manage the heart condition with specific medication.
In April 2015, Katie and James received the best news of their lives when doctors said “We can’t believe this is the same boy from 3 years ago”, as the medication appeared to have done its job and given Ezekiel the opportunity to move out of the dangerous condition his heart had been in at 10 months old.
Checkups will continue for Ezekiel, so trips to Edmonton will always be a part of the family’s new normal. Luckily the family has the Ronald McDonald House, a home away from home that they consider to be vital in the medical processes they face. “The House gives Ezekiel the opportunity to play – it takes so much stress off of him due to the medical treatments and appointments”, says James, “and he calls everyone here his friend”. This is evident as Ezekiel happily lets mom and dad have a bit of a pause in the Family Room while he spends a couple hours with his friends doing crafts in the kitchen, and playing dress up with the recreation volunteers.
Katie and James know the House, and now that they can better schedule their appointments because of Ezekiel’s improved condition, if they aren’t able to stay here – they access the House’s Day Pass Program whenever they are in town. “At first we weren’t sure, we didn’t know if it would be strange to just show up if we weren’t staying there,” says Katie, “But any doubts were cast away when the staff and volunteers showed just as much concern and compassion as they would any family staying in one of the rooms”.
Life can be very isolating for any family experiencing a child’s complex medical journey – as Katie says “Everything else takes a backseat”. It is also never a guarantee what the rest of your life is going to look like – milestones other kids will achieve before your children, or moments your child might never experience that you thought you would be celebrating. But Katie has wonderful advice for those going through a similar experience, as well as those who have never experienced what the Sanford’s have experienced, “You learn to change your perspective. Other kids haven’t gone through what Ezekiel has gone through – things are different for him, and we are learning to be okay with that, and celebrate what those differences are”.
With five surgeries completed, three years of being on a feeding tube, and early intervention therapies since he was six months old – the spirit of this young boy, and the strength of his parents is something we should all be celebrating.