I keep waiting for life to slow down, yet it never does. We are lucky to find our slice of normal in everyday life amid the chaos, however. I feel blessed to see my children participating in sports we never thought they would be able to play. Sometimes, as I watch my children participate in sports and watch as other parents seemingly take their own children’s ability to play for granted, I want to scream, “Don’t you know how blessed you are!?” Finding a balance can be difficult. Knowing what and when to share can be tough. It can feel like walking on a tightrope five hundred feet above a crowd without a net to catch you, should you fall. There are times when I have not been able to keep my mouth shut and others where I was rendered speechless. It really is a matter of perspective.
We had just returned from a week long trip to Cincinnati Children’s Hospital where my two youngest had several appointments, testing and their annual bone marrow biopsies. During this trip, their secondary diagnosis of Mitochondrial disease was made firm while visiting the Mito specialists there and my mind was all abuzz with thoughts of treatments and what this diagnosis meant for their futures. As we settled back into our routine of home schooling, piano, baseball and football practices, we also had to find time to make it to follow-up appointments and meetings.
Early one Saturday, I brought Sean to baseball practice. I watched in amazement. The assistant coach was yelling at the boys, especially his own son. He told his son repeatedly, “You’re terrible!” and, “That was terrible!” along with a myriad of other demeaning statements. I remained quiet. He then yelled at my son after he missed fielding a ball, “That is terrible! As punishment, run out and get the ball now!” “Wow,” I thought to myself. I still stayed silent. He told another boy in a condescending tone, “You can’t catch!” Again, I remained silent. Practice went on for another hour before the boys moved to catching fly balls. That’s when things got out of control. His son kept missing fly balls and the coach lost his temper. He screamed, “Jes**, G-d!” and continued to belittle his son in front of the other players. When his son did catch a ball, he said something like, “See where you are catching the ball? That is why so many of the balls roll out of your glove!” I thought, “Wow! That is over the top, his kid caught the ball and he is still not pleased!” The last straw for me was when his son missed yet another fly ball. The coach threw the bat down and yelled the Lord’s name in vain. At that moment, I knew I was going to say something in hopes that he might gain a bit of perspective. He dismissed all the players except for his son, at whom more insults were hurled as he was also told, “You will stay out here until you catch three fly balls in a row!” That is when I told Sean it was time to leave and said to the assistant, “In the scheme of things, missing a few fly balls really isn’t a big deal. We spent last week at the hospital with our two youngest having various testing and their biopsies. We are just glad that Sean is able to be out here and play baseball.” The coach stared at me and turned around. He said nothing. His friend asked what was wrong with the boys and I tried to keep it simple as I walked with Sean to the truck, ” They have a genetic disease and we have to keep an eye on their bone marrow to be sure they are not developing leukemia.” Before getting into the truck I said, “Thank you for volunteering to practice with the boys.”
I felt a small twinge of guilt as I drove away. Well, I only felt it for a second. Sometimes, I feel guilty for telling people about our lives and what we deal with on a daily basis. Other times, I think that people might benefit from a little perspective. Not that I am the authority on perspective, but I do think we parents of chronically ill children can help others reflect on the blessings we all have been given in life. Again, it really is all a matter of perspective. Our SDS family recently lost another young adult in this past month, David Smyth. David developed leukemia and did not have a donor in the bone marrow donor registries. Jasmine, another SDS friend, has been battling for her life in the ICU over the last several weeks. Having lost so many friends to Shwachman-Diamond Syndrome over the years (this year we lost a few friends to Mitochondrial disease, as well), we realize that some things in life really are not important enough to become angry over.
Over the years, we’ve had what I call, “sports challenges”. Sometimes, these sports challenges are the final straw on the stress scale. I’ve been yelled at by a baseball coach in front of players and parents for having the audacity to ask him (privately) to discuss good sportsmanship with the assistants and players. They were all being nasty to one another and as the season progressed, it became worse. The boys would hurl insults when their teammates made mistakes and coaches were yelling for what seemed an eternity over every mistake. I was rendered speechless as he stood there yelling at me. It was crazy. Other times, I have found courage to speak up. It does take courage and sometimes I am so worn out from our day to day medical adventures, I just sit and say nothing. I remember a mom who yelled at another mom for borrowing a band aid for an injured player. Then there was the lady who yelled at me because the team had run out of orange socks. And we cannot forget the parents who become angry when a team loses. It really makes you want to say, “Get some perspective, people!” Obviously, this matter of perspective carries over to other facets of life. The person screaming at the checkout clerk in the grocery, the person at the coffee shop raging over coffee that is not precisely the “proper” temperature, and the person at the fast food place going ballistic because he has to wait a few minutes longer than he thinks he should.
We find ourselves in an alternate universe, those of us with sick kids. We’ve seen and met dying children. We’ve visited these dying children and their families at home and in the hospitals. We know far too many children who have passed away and we know all too well how fragile life is. We know that life can change in an instant. We know all to well the saying, “There but for the grace of God go I.” We could be the next family sitting in ICU because of some strange infection or the next family battling the life-threatening after effects of bone marrow transplant. Our family has been close to transplant before. It is a scary place to be, especially knowing what we know.
We fight for our children and pray for the others who are battling life-threatening complications of this disease. The joy we have when our children can play sports with the medical challenges they face is greater than the joy we feel when our healthy son plays. Both bring joy, but the joy is greater for the one who faces challenges getting to the field for competition because of what we know and have experienced. We realize how blessed we are that our boys have been able to overcome the obstacles they face, because we know too many children who cannot play sports at all. Joseph recently played his first real game of tackle football. We were so proud of him because he did not allow the medical challenges he faces each day to stop him from playing. The challenges are many, but together, we have come up with strategies to help him overcome the problems and tackle the game of football. These are the moments I cherish -the triumph over Shwachman-Diamond Syndrome and Mitochondrial disease. My boys win the competition before they ever step onto the playing field. They continue to win something far greater than most of us will ever know – the victory over two disabling diseases and not allowing those diseases to define their lives.
There are days when I am actually thankful to have Shwachman-Diamond and Mitochondrial disease in my vocabulary. I think God has allowed me to count my blessings and given me the grace to gain perspective from our experiences. While I do not like the diseases and I pray daily for a cure to be found, there really are blessings to be had. The joys are far greater because we have gained perspective and know how important it is not to take the joys in life for granted. I wish that all parents could feel the joy we feel — the joy of watching your children accepting the disease and not allowing it to define who they are or what they can do in life. I believe that parents of chronically ill children can bring a message to the world. I believe these children can bring a message to the world. Sometimes, we just have to live it, say it and walk away. Do not be afraid to share your perspective with the world, for we live in a world where far too many folks could use a little!