A few months ago, I attended (via teleconference) our
monthly Family Centred Care Council Meeting at the Stollery. As is the practise at our meetings we start
with a patient story. We do this for two
reasons. It is a great way to get to
know our fellow council members and it is also a very friendly environment for
us to practise sharing our stories. Many
of us who have been through some spectacular health care journeys are routinely asked to share our stories in a variety of venues. Presenting at our council meetings is a great
way to practice our delivery for those who are not comfortable with public
speaking.
These stories also spark some very interesting and pertinent
discussions. At this particular meeting
a Mom shared the story of her son who passed away as an infant. She chronicled her journey and shared many of
her experiences. These stories are spellbinding. Something interesting that she shared was
that after her son passed away she was referred to a psychologist who worked
with her family for nearly a year after the passing of their son. She shared how this support was essential for
her and her family to go through the grieving process.
As I heard this story and the adjustments this family had to
go through I was reminded of our struggles post-hospital. I often talk about the "continuum of care" that
should exist after you leave the hospital.
We left the hospital eternally grateful that Russell’s life had been saved. When in hospital we were told so many
positive things about life post-transplant. Everything would be so wonderful. Life could go back to normal.
Nothing could have been further from the truth.
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| Russell has some unique life experiences |
I understand why people were telling us all these positive
things about Russell’s new life, with a new heart. They were trying to keep us upbeat and positive. Fortunately, some programs were inplacefor us once we finally received the transplant and were sent home. When we returned home from Edmonton
we were immediately referred to Child Development. We thought this was routine follow-up but it
soon became very apparent that we would be requiring additional supports for
many issues that we would encounter. Keep in mind that transplant is the last option for anyone with a heart issue. Transplant kids receive many invasive; but
life-saving therapies. What we learned when we talked to other families, they were dealing
with many of the same issues that we were.
Eating issues, kidney dysfunction, developmental delays…the list went on
and on. Why didn’t someone mention this
or were we too distracted by what was going on around us to listen? Regardless, we were listening now.
I think our real eye-opener occurred when Russell started
school. We have some wonderful people
that we deal with at our school and they try really hard. We have no complaints. However, it is quite stunning when they
openly admit they are not prepared for dealing with kids like Russell. That is quite a startling admission. Medically complex kids like Russell are not
the norm for the public school system.
Schools have adapted their programs to deal with issues like Autism,
ADHD, ADD etc. No one can tell us
specifically why Russell’s developmental issues even exist. They could be medically related, it could be
related to trauma that he has endured, or it could be something unrelated to
any of his medical complexities. It
could be his natural state. No one
knows. We often get comments like “he
demonstrates some characteristics of autism….BUT he’s not autistic.” They equate behaviour he demonstrates to
something they are familiar with.
As parents, this is particularly heart breaking. We see a little boy who has cheated death on
several occasions continue to struggle years later. We pray that he could just get past all of
the difficulties. If anyone deserves a
break; it’s him. He is very aware that
he can’t do some of the things his classmates are doing. He is his own worst critic. It is also very frustrating to have meetings,
like we do, to discuss Russell’s academic plan.
A meeting with no less than 8 people who are specialists in a variety of
educational fields. All of which are
learning with us. They are great at
evaluating Russell and where he stands on a developmental level but a clear
plan to close the gap is not readily apparent.
It will be a lot of hard work…for all of us. What will the end result be? We have no idea.
The reality of his complex life has become more apparent
over the last few weeks as he has started to be more forthcoming about his
feelings. To this point, he has never
acknowledged his special circumstances or the fact that he has a
transplant. One of Russell’s challenges
is communication. Over the past couple
of weeks he has begun expressing how he feels about his circumstances. One evening, after a day that included his
obligatory blood work I had a chance to discuss this process that he has gone
through literally hundreds of times. I
could tell he was a bit upset about it.
I asked him how he felt about going for blood work. He looked down and very quietly he told me
“it sucked.” I agreed. It was a tough moment as this was the first
time he ever expressed his thoughts on this.
He has never spoken about it before.
This was a bittersweet moment as I was glad he expressed his feelings
but it also confirmed our feelings about how difficult these procedures are for
him.
I know many of our friends and family have hoped and prayed
for that our life would return to some semblance of “normal” (whatever that
means). As we prepare for our third trip
out of province for surgery (for Susan), it seems very apparent that this will
likely never happen.
Difficult times have a way of continuing for months and
years. If we aren’t dealing with these
issues, we are dealing with the effects of them for a long time after it
appears these chapters in our lives are over.
After we were released from hospital with Russell we had a year of “firsts”. His first birthday, the anniversary of his “crash”
in the Winnipeg Children’s ER, the Berlin Heart, and the transplant
itself. Each anniversary had a profound effect
on us. To this day…we have many vivid
reminders that will transport us back in time to some of our darkest days in
the Stollery ICU. It will always be this
way for us but it is also a reminder of how far we have come.
For someone who is reading this I have just one
suggestion. If you know of someone who
is going through a difficult time (whatever that difficulty is). Remember that there are no “Hollywood”
endings. Momentous life changing events
are exactly that; “life changing.” There
is no going back. If you want to support
a friend or family member you have to remember that the effects are
ongoing. It’s a good idea to check in on
these people 6 months or a year down the road.
The process of adjustment is a long one, and we need to keep these people
in our thoughts and prayers and reach out to them even when things appear to
have returned to normal. Many emotions
can be just beneath the surface.
