WHEN WILL THEY LISTEN?

Anyone who reads any of my posts here has heard me talk about the many difficulties of caring for a child with chronic diseases.  Many are born with these illnesses and live their entire lives with them such as my son Alex.  There are others that develop their disease, syndrome, or other condition in their youth.  As an adult, we understand our sickness and what is needed:  Surgery, necessary blood tests, or examinations.  It is not so for our little ones.

If you could imagine what it would be like to have strangers poking and prodding every inch of your body, what would you think?  Children are at the mercy of the doctors, nurses and lab technicians.  As they grow, there are medicines, appointments, surgeries, procedures and all the other things that are ordered for their illness.  Everything is completely out of their hands.  No control.  They have anxiety and depression.  In my experience, Alex never wanted to make friends near home or at school.  He told me later in his life that he didn’t want anyone to be sad or hurt if he died.  Whether we as parents realize it or not, the thought of death follows them everywhere.  If you were in the hospital  and emergency rooms as much as they are, you would have a fear of dying also.

The one thing that is missing from our children’s health care is mental health. The fear and grief over the life that they will never live is devastating.  Their abilities are challenged. If he/she has severe asthma, there is no running or playing sports.  If it is a sever case of Ehlers Danlos plus Osteogenesis Imperfecta with deformed feet and hands, there is little that she can do.  This is what my niece Natalie was born with and lived in a body cast for the first year of her life.  These sweet children will never be like the others.  Parents may tell them over and over that they are special, that God made them like that for a reason, or whatever they believe will magically give them the self-esteem and courage to continue on their journey.  It does not take long for a child to become addicted to the drugs they are given for the pain.  We as parents feel helpless while we watch our babies deteriorate physically and emotionally.

You might wonder why there is not a mental component to the care of children with chronic illnesses.  You probably know that it is because of money.  I think that you cannot believe that any amount of money is worth one life taken from us.  The fact is that it happens all the time.  Statics say that children with chronic problems are much more likely to commit suicide than a child without illnesses.

This is exactly why I am blogging.  There must be change in our medical system.  I have been asked by a well-known charity that has government funding to develop a model medical center in central California to give my professional opinion on how I thought things should change. It was a difficult task but I wrote it and submitted it to the senior vice president and his response was that he agreed with everything that I had written.  But.  Yes, there’s a but.  He said that he did not believe that medical staff would be able to make those changes.  Nor would they want to spend the money that way.  But I have not given up.  I know that I can make it easier for the children and their parents.

This is the article that got me on my soap box tonight.  It is so sad.  Please read and see how we need these changes now.  I live with the same illness that the girl in the article had.
Dysautonomia International initially wrote this on their site:

Very sad news. Many in our community have heard the news that Christina Tournant, a 17-year-old MIT student who had POTS for the past two years, committed suicide last week. Her health had recently taken a turn for the worse and she had to return home from college. It can be extremely difficult living with a debilitating chronic illness, especially when the plans you had for your life don’t work out as you hoped they would. Our hearts go out to Christina’s friends and family.
According to the National Alliance on Mental Illness suicide is the 3rd leading cause of death among adolescents in the US and chronic illness is a risk factor for suicide. Whatever age you are, if you or a loved one are depressed or having suicidal thoughts, please seek help as soon as possible. Reach out to family, friends, online support groups, medical and mental health professionals, or the National Suicide Prevention Hotline (1-800-273-8255).
The JED Foundation provides emotional health and suicide prevention support for college students and parents. http://www.jedfoundation.org
The National Alliance on Mental Illness provides support, headlines and educational information on depression and other mental health issues. http://www.nami.org/Find-Support