I remember the day our son Eric was born. It was one of those typical rainy days in early March. Winter had passed and Spring had yet to arrive.
It was a day we awaited with eagerness and excitement. We were going to have another child. Adam would have a younger sibling and we would have a baby to nurture and love. There would be so much to enjoy and we were looking forward to every minute.
Two children and our family would be complete.
As my newborn baby was placed into my arms, I remember noticing how pink and perfect he looked. I looked up at my husband, Lou, and we shared a smile. I felt warm and content. Time stood still and I shared a peaceful moment with my child.
Suddenly and without warning, my baby was whisked away. My arms were now empty and my baby was gone.
Something was wrong.
The events that happened next are still a blur to me. We waited and waited and after what seemed like an eternity, we were told that our baby was very sick. His lungs were full of fluid and he was struggling to breathe. I listened with disbelief as I tried to process this information. I was no longer anticipating the colour of his eyes or who he will look like, all I could wish for was that my baby would be okay.
In the days and months that followed, there were many questions and very few answers. We felt overwhelmed, worried and confused. Friends and family shared our concern yet were unsure of how to respond. Instead of celebrating the birth of our child, we spent our time in hospitals, doctors offices and testing rooms. Our son was medically fragile and had global developmental delay. This was not what we had planned, for us, or for him.
In the story, “Welcome to Holland”, by Emily Perl Kingsley, the author uses a comparison of the excitement for a vacation to Italy that becomes a disappointment when the plane lands in Holland instead. The metaphor is that the trip to Italy is a typical birth and child-raising experience, and that the trip to Holland is the experience of having and raising a child with a disability. As the story continues, the author expands on coming to terms with a change in plans, a different focus and how a parent begins to notice all of the good things about a new situation.
When parents first learn that their child has a disability, it is a turning point in their lives. My friend Jane says, “It’s like being sent adrift on the ocean without a paddle. You feel all alone and you don’t know what lies ahead.”
I relate it to a detour.
All of a sudden, it appears. A sign that directs you to take a different route. It’s hugely unexpected. You have no choice but to take the turn for there is no other way to go. You enter with caution. The uncertainty arouses some fear because you are not familiar with this path. You would feel more comfortable if someone was with you but you are alone. Traffic is slow and there are frequent stops along the way. You become impatient and frustrated because you will not arrive at your destination on time. This has really setback your plans and you are worried that others will judge you for it.
“Why wasn’t I warned about this?”.
As your journey continues, the slower pace allows you to notice the beauty around you. The scenery is eye-catching with landscape diverse and incomparable to anything you have ever experienced. It is colorful and spirited, brilliant and strong. You feel camaraderie and companionship as you travel this path with others.
You begin to appreciate the opportunity and realize how much you are learning. You didn’t know this path could offer so much. Your eyes have been opened to a whole new existence. Your fear has subsided and you are proud of your courage. Your anger is replaced with a sense of enlightenment and wisdom. Your life is richer and more meaningful than you had ever imagined. As you pass by new travelers you give them a smile of reassurance to let them know that it will be okay.
Eventually you get back on your original route. You have decided upon a different destination and the pace of your travel doesn’t matter anymore. This time it is your choice to take a new direction and you are more equipped for unanticipated change. You have people you can call upon if you want guidance along the way. You now proceed with confidence and conviction.
How can we help families see the positive?
It can take several years for parents to appreciate the good things about their situation and realize how meaningful their life has become. Plenty of support professionals are involved, however few truly understand the pain and constant struggle that a family endures. While there are treatment plans, various forms of therapy, surgeries and other interventions for the child, support for the impact on the family is minimal or ignored.
When you meet a family, consider the following questions:
Do you present the news with a positive approach or with a heavy heart?
Are your words encouraging or do they reflect disappointment?
Have you come to terms with your own bias toward children with a disability?
Do you truly understand the family perspective?
What opportunities do you offer families to identify and express their emotions?
It is good practice to explore ideas for how to strengthen families right from the beginning. Equip your staff with an in-depth understanding of the family perspective to improve your capacity to work with greater empathy, sensitivity and genuine responsiveness.
It is also important to work with families to guide them to a greater understanding of the emotional impact of their situation and how to uncover the abundance in their situation and grow toward acceptance.