I have been taking time to relax this week because I have been sick. I feel better and I am eager to share something today. In times when I am quiet, I think of things to write about. Today I feel up for writing.
11 years old
I have many memories of days when I couldn’t write, before I could communicate, before I could answer yes and no questions, not knowing if I would ever be able to do that. Today I am writing a message to myself, a message I would have wanted to hear when I was young and had no words to share with others. No hope that it would ever be different. Today I can write this letter. This is what I needed to hear.
Me at 9 years with Roxanne, one of my favorite people
My Dear Little Karly,
You see and can’t respond. You hear and cannot speak. You dream and cannot make those dreams come true. Your hope is long gone that these things will be yours. It is your life that is different than everyone around you. You do not get the same treatment in school that other students get. You hear people speaking to you like you are an infant. You cannot respond with something suitable to that kind of disrespect. There seems to be so little that is right for you. It seems so hopeless right now. Your life seems to hard to bear. It’s not the life you would have loved to live. There has been little to ease your worried mind.
It will not always be this way. You will have many things happen to you that you would not have chosen, but your life will be different than it is today. Rett Syndrome will be discovered and there will be answers for what happened to you. Do NOT fear your life. Do not fear what will happen. You will be loved in ways you couldn’t have imagined. You will be respected for what you can do, not pitied for what you are unable to do. You will have a voice. Your words will matter to many people.
Remember these days long enough to write down your experiences, then let them go. They are a heavy burden on your heart. But other families need to know what you have lived through. You will always have a place in this world. Even if it looks hopeless now, your life will make a difference and you will have opportunities to contribute to this world.
You will have joy. You will find peace when you are outdoors. You will discover a love of water and how much it will soothe you to spend time at the lake and watch the river boats on the St Croix. You have always loved music and heard many songs played in your home, but what you don’t know now is that you will compose music. You will have a voice through your music that others can hear with their ears. You will not know how many people will be blessed by your songs. But, most of all, you will be loved by God. You will have a blessed life. Not only for the things you can do, but because you are so loved by God and He will make your life worth living. He will give you peace in the many difficult days you will have. He will make the impossible happen. He will bring hope to a life that seems impossible to enjoy. Love will be the reason you are alive.
It will be possible for you to have hope. Don’t look at what you cannot do because that will discourage you. Look at what you are capable of. Much will be discovered yet. You do not need to be discouraged. For each difficult day you will have days that are incredible.
If you focus on the spiritual side of your life you will be free. If you focus on your body and your pain and your limitations, you will be in prison your whole life. In the end you will know how many people have been changed by your story, so don’t be fearful to share the truth. The truth will set you free and it will help bring understanding to a disorder that is so cruel.
When your life is finished here on earth you will have such joy in knowing that you did everything you could to help others have hope for themselves.
Find joy in the little things. They are often the biggest things.
You are loved deeply.
Me on my 1 year birthday
I want to end my blog by saying, I didn’t realize how hard this would be to write, but I am glad I did it. It’s important for me to remember, but not to focus on it too much. I hope my experiences in my life can be helpful to other Rett families today.