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.
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.