When our second grandson, Jase, was born we were so excited. This beautiful little boy would be so loved. Then we were told he had cystic fibrosis. Our hearts stopped.
We soon became very frustrated as parents because we could not help our son help his son. We were unable to talk with the doctors about the diagnosis and treatments because we were not immediate family.
Over the years, we have experienced the highs and lows with Jase just as others with loved ones with CF do. Jase is 7, and he has had six surgeries. Each time is a gut-wrenching experience. Always in the back of our minds, we think, “Is this the answer to this problem? Will this give him some relief?” Happily, the surgeries have all been very productive, and the care teams have and are fantastic. And Jase, our little superhero, takes it in stride.
Oh, don't believe there are not emotional moments and scares. We just help him work through them with love and patience.
Being grandparents and caregivers to a CF child is difficult. Taking the time to do treatments and not slighting the other grandchildren is hard to manage. Knowing when a cold is just a cold or is CF-related can be hard -- the same with knowing whether a tummy ache is just the need to use the bathroom or is a blockage. We have realized that giving advice to his parents based on our own child-rearing experience is not always the best thing for Jase. We do what we can to support our family as they struggle to make decisions on what is right for their child.
Hospital stays are the hardest -- whether it is a two-week tune-up, a bowel blockage that takes days of G-tube laxatives, or a necessary surgery. Ever since his neonatal intensive care unit stay, he has never been alone at the hospital. Between his parents, both sets of grandparents, and his aunts and uncles that are close by, there is always someone with him.
Jase has given us the strength to fight for all those with CF; we joke in our house that as a Schlosser, it's “go big or go home.” Jase is one of four people in the world with his specific mutations (one nonsense and one rare). But he is always smiling and acting like a normal kid -- broken bones and all. He has learned to care for himself and knows the right questions to ask.
We are always amazed at how much Jase takes responsibility for in his own care, even at such a young age. He is teaching us all how to live life to the fullest and how to have faith and love. He has a strength that is unmatched and unparalleled. He gave us a memory box one Christmas so we can capture all the things we do together. It brought me to tears. Jase has the heart of a lion, and he certainly has his pride. (Jase's Pride is the name of our Great Strides team).
He reminds us daily to not take anything for granted. We cherish all the times we have with him and all our family.
When we first learned of his diagnosis, Marian reached out to the San Diego Cystic Fibrosis Foundation Chapter. The chapter gave us all hope, explaining that there were many drugs in the pipeline and already established treatments. They also showed us the many ways we could help raise the much-needed funds to help find a cure.
Well, we jumped in with both feet and did our first fundraiser before Jase was a year old. We started in our first year by participating in Great Strides. During our subsequent Great Strides walks, we discovered that finding others who had children with CF was huge. We have developed relationships with those other families and are now like one great big family.
During our second year of volunteering, we asked the chapter what we could do to help. Since that time, we have tried to attend or help with all the chapter's fundraisers. We became involved with Grampions, a group of grandparents and grandpersons who are passionate about helping those with CF live their best lives. Grampions is a group of like-minded individuals who are often under-utilized looking for a cure to this life-shortening disease. It is more than raising money -- it's providing awareness about CF. Group members can relate to each other and share their experiences, both good and bad.
As grandparents, we have the time and means to help our grandson and others with CF. With one of us retired and the other almost retired, the Foundation has given us not only a purpose -- to be more than ourselves -- but a desire to do more for those who truly need help and a cure for CF.
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