Perspective from the Heart
The inspiration for this post is PERSPECTIVE. This post is from my heart ❤ and is about my life. As many of you know, my oldest son was diagnosed with a rare neuromuscular disease called Friedreich’s Ataxia. I want to bring awareness to Rare Diseases as this is something that is the reality of our everyday life. International Rare Disease Day is February 28, 2018. https://www.rarediseaseday.org/country/ca/canada
Friedreich’s Ataxia (FA) is a debilitating, life-shortening, degenerative neuromuscular disorder. About one in 50,000 people in the United States have Friedreich’s Ataxia (FA). This disease affects the heart, lungs and neuromuscular system of the patient. Should you wish to learn more about FA please visit http://www.curefa.org/whatis for more information.
This post comes from a speech that my husband and I gave at a fundraiser for my oldest son, here was our perspective at the beginning of our journey.
John F. Kennedy said, “we choose to go to the moon in this decade and do the other things. Not because they are easy, but because they are hard.” Sometimes we feel like our voyage with FA is like going to the moon. I am sure when JFK said these words, most people thought it wasn’t just hard, it was impossible. I have to admit that when Brendan was diagnosed with FA, we felt our ability to support him would be impossible. Picture for a moment a house with four kids: our twins were firmly in their terrible twos, our oldest daughter had started Kindergarten and Brendan was definitely in his teenage years. Flying to the moon at that moment looked relatively easy. However, we have learned over time – that life isn’t easy – it is hard – but it is not impossible. I truly believe, with love and imagination, we can do this.
This is a journey we could never have thought that we would have to endure. The challenges we’ve faced as a family have been huge. There were nights when we sat up asking ourselves “could things get any worse?” As time has passed, we have come to see that things could always be worse and that dark clouds do have silver linings.
When Brendan was first diagnosed, our goal was to educate as many people as possible about Brendan’s condition and to help him feel the love from his community. In addition, we wanted all of our kids to understand the importance of caring and compassion for everyone and anyone. We believe that this path has many lessons to teach us and that because Brendan is a part of our lives, we will all be better for it. It has been remarkable to see how so many people have embraced him in so many ways.
This diagnosis has changed our lives forever. It has deeply affected our entire family. There are days when it is easy to get swallowed up thinking about what will happen next. We are trying to live in the moment and take it one day at a time. We do not know what the future will hold. Instead, we are trying to fill each day with as many good memories as we can for the whole family. We want to give Brendan as many positive experiences as we can and make as many of his dreams come true. We want Brendan to know how much we love him and that we will care for him through this journey no matter what. Everyone who meets him cannot help but love him. He is an inspiration.
Fast forward six years later, to today and I can say that it is still just as challenging. The ins and outs of this disease are often mind-numbing. As a parent, the worry as you see your child struggle is indescribable. I am often left questioning am I doing enough and how can I truly help him? FA has tested many facets of our life, including many relationships, boundaries and beliefs. There are many days when I need to shift my perspective to be present and not looking beyond the precious moments of joy.
In six years, we have gone from having a healthy kid who was running around chasing his friends around to now a young adult who is a full-time wheelchair user. He has had 13 levels of his spine fused to correct and prevent further scoliosis deterioration and protect his organs. The use of his extremities has become more and more difficult as the days pass. Watching the energy he must exert just to perform even the simplest day to day task is mind-blowing. Perhaps the most difficult thing to watch is the isolation that sets in. Living in Canada with reduced mobility and long winters make getting around challenging. Also, as we watch his peers go on to new experiences, we can’t help but feel a sadness for what his reality looks like. Our wish for him is that he finds his way – whatever that path looks like for him and we want him to know how much he is loved. ❤
The challenge of a rare disease is real and a perspective change sometimes allows us to see what is really important. We believe that if we work together to bring awareness and shine the light not only on the struggles but the triumphs this will help create change. We believe that a big part of that change is awareness and love, we all need more love in our hearts. ❤❤
Please help me spread the word about FA and rare disease. Please contact me if you would like to learn more firstname.lastname@example.org
Making my ARC!