|MHE and Me|
|A letter to
We recently found out that you were diagnosed with Multiple Hereditary Exostoses(MHE) and I would like you to know somewhat what to expect as you grow into the brilliant young man that your mother and I know that you will be.
Right now the diagnosis has just affected us and you are still too young to realize the Cross that you have been chosen to carry. Everyone has theirs and God has chosen yours to be a lifetime with MHE. Luka, you will find out one day that you were one of the lucky ones. There will be very trying times in your life, and you will wish above anything else that you could be normal like everyone else, but there will also come a time where you will understand that the obstacle God gave you is easily overcome.
While I realize that with the changing times, everyone’s experience is different, I will give you a little insight into how I grew up with MHE. While this walk down memory lane might be a little long winded, I promise not to tell you stories of how we only had three TV stations and I had no idea what a computer was in grade school. You will hear all of those stories plenty growing up I am certain. I do not remember when I was diagnosed, I just remember making the hour long trip to Madison to see Dr. Okagaki a couple of times each year. I never knew that it was called MHE, I just knew that I was different than the other kids. Dr. Okagaki passed away when I was in 9th grade and we never went back to see a doctor regarding MHE again. Also the only people who I ever knew who had MHE besides myself were your Uncle Larry and your Grandfather. My MHE is more severe than theirs (your grandfather passed away from cancer related to smoking), and at times I would have done anything to be someone else. Having the benefit of hindsight, I now realize that I had it pretty good.
I remember having one surgery when I was about 10 years old to remove bones from two spots on my arms. I also remember while I was recovering that one of my roommates (we shared hospital beds back then) had cancer, and one had just been accidentally run over by his dad’s truck. So I did not feel that I had it so bad.
I remember being the last kid picked usually for all the sports during gym class and recess. I also was cut when I tried to play basketball in high school. I never let this stop me from having a passion for sports or playing all sports when I could, as best as I could. This desire led me to playing baseball in college. While I was not the best player on the team, I worked hard, had fun, made friends and earned my letter. I went from being the last one picked to one of three in my high school class to play sports collegiately.
I also remember that while I had many female friends in high school, I had no girlfriends. This is one of the areas that can keep you isolated and feeling depressed more than anything during high school. While your body will show effects of being different than everyone else, you will still have the same feelings and crushes as every other person. You will find that as you get older and people are more educated, it becomes less of a problem. I had strong feelings for many girls growing up that were not returned, but in the end, I wouldn’t trade your mother for any of them. You will find out that there is someone for everyone, and when the time is right, you will find her also. I met a beautiful, intelligent woman who not only married me, but gave me the most precious gift of all – you.
I did not have the resources that are available to you now and I urge you to take advantage of them Doctors today know more about the disease, with the internet you can meet others who are carrying the same Cross and share your experiences. You have access to Dr. Pauli who specializes in treating MHE. You were also diagnosed at one year old so we can track your progress and get you any, and all, help that you need. You also have an informed and caring family who will always be there for you.
In addition, I want to offer you some advice on what I expect from you. While there will always be someone stronger, faster, better looking, smarter, etc.. all you can control is you. How far you go in life, and how successful you are is completely up to you. Get a high quality education, but never stop learning. Your education is one thing that only you can control. Always embrace new experiences and never be afraid to say “YES”. Work hard and play hard, attack everything with passion. Diversify your life, live your passions but do not let any one thing consume you. Focus on all of your successes, and learn from your failures. Hold yourself to a higher standard than anyone else, then you will always have the power over your own life. Never give that up, and you can handle any problem!! Finally, leave the world a better place than you found it. My grandkids need a place to grow up also.
Luka, as I said, we all have our Cross to carry, and yours is MHE. I know that with your spirit and soul you will control MHE, it will not control you. You have that power inside you!