Without a Crystal Ball

Our Journey through Chronic Illness

If you pay attention to the disability and rare disease community, you will read that there is a fight about what we call our children with disabilities and diseases. Some mothers really do not want you to call their child an inspiration. They don’t want you to tell them they are amazing and strong for taking care of their child. They simply don’t want you to acknowledge that the disease or the disability is a reason to celebrate and compliment the child. I’m here today to tell you that I’m ok with you calling Von an inspiration.

When Von was born, he was born without much of a chance. He came in to the world early and he was given horrible lungs. He also has pieces of his brain that are malformed and missing.  If he were born 40 years ago, the truth is he would not be alive. They didn’t have the medications to keep him alive then. There was not treatment yet for Growth hormone deficiency, and very little was known about the disease.  If you think about that, children that are now born with his disease are really the first we are seeing survive and thrive. There are adults now in their 30s that are the first that have gotten through adolescence with the disease and showing mother’s like me what can be possible. As a mother to a child with a life threatening disease, that is INSPIRING.

Children with life threatening and limiting diseases are proving doctors, therapists and educators wrong every single day. They are reaching milestones that no one thought possible. We had no idea if Von would walk, talk or ever be able to learn. The doctors had no idea what his prognosis was, and we were even told a year ago by a therapist, “Von may never be verbal.” When ever someone says Von won’t do something, I quietly think to myself “You just wait.” I will never be satisfied knowing this is it for Von. He will hit and reach every milestone he puts his mind to, and that is INSPIRING.

Children that are born with diseases that debilitate and ravage the body work harder to do everything. I challenge you to go to an event for children with life threatening or life limiting diseases and see what these children look like and how they act. Every single event I’ve been to, and I have been to many, the children are all smiling, laughing and enjoying their time. I have witnessed children on vents and in wheelchairs, squeal in delight watching a movie. Over the summer, I watched a young girl with a trach run through a bouncy house that has bubbles sprayed on to her. She gleefully laughed and clapped. When we take Von to any of these events, the smile on his face is enough for me to go to bed happy. These kids have seen it all. Many of them have spent more time in the hospital than at home, and yet they smile, laugh and find a way to enjoy life. That is INSPIRING.

As a parent of a child that gets injections daily and takes more medications per day than I have in my life, I am constantly inspired by his attitude and willingness to be happy.  Children that are sick simply want to be kids. They don’t care about their disease, and most don’t even know that they have a disease. The beautiful thing about children is the sheer innocence they possess. Many are so used to not feeling well, that they don’t know how it feels to be healthy. While to many people that fact is sad, for the child they truly know no difference. Despite the chronic pain, headaches, stomach upsets, reflux, or asthma related events, these children will find a way to melt your hearts with their smiles, laughs and hugs. If that isn’t inspiring, I have no idea what would be inspiring.

Critics will say we as parents want to be recognized as martyrs. We don’t want to be known as martyrs, but we most certainly want you to recognize our children. We want you to know how hard they fight to live, and the lengths these kids go to survive. Despite the mountains that are laid before them, these kids find a way every single day to get up and keep on fighting. They don’t get to simply be just a child. Play time is often therapy for children with diseases and disabilities. We have to teach our kids to speak, play, touch, and understand how to interact with others. Most children have spent more time around adults and professionals than around other children. They have to be taught to play pretend, or they have to be taught to stack boxes.  We as their parents take none of this for granted. When our child reaches that milestone that a healthy child reached on time, we as their parents celebrate and we find it inspiring. Many of our kids reach and hit milestone no one ever expected. This is INSPIRING.

There is harsh criticism right now in the community about how we can and cannot refer to our children, but I’m here to tell you that if you meet me or Von, go ahead and call him an inspiration. This child has been in patient in the hospital for more than 2 months of his life, he has been in the ER more than 25 times, and he has nurses with him every single day. Von goes to therapy 6 times a week, and spends hours every single day working on skills that children 18 months younger have already mastered. We still have a long way to go, but we are making progress every single day. There are days I want to give up and give in, but then I see my son’s face and I realize this is his fight and I’m just a passenger. If he is willing to keep on fighting, I am going to keep on fighting for him and being his voice. His fight and drive INSPIRES me to keep on going for him. I challenge you to continue to be inspired by these stories. They truly show us the fragility of the human life and they demonstrate the will and drive of the human spirit. There is nothing more inspiring to me than someone beating the odds.

 

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