Ashlee's Story

Ashlee was my daughter. Ashlee seemed to be a normal happy baby. When she was about 18 months old, she started falling down, and wasn't talking as well as she had been. She seemed to be losing ground instead of gaining it. I took her to doctor after doctor. Finally they told me she had cerebral palsy. I thought, "Okay fine. We will get her some therapy and just deal with it." Well, she kept getting worse and worse and I knew CP doesn't get worse. So I started going to doctor after doctor again. When she fell down and put her teeth thru her bottom lip I actually had a doctor tell me she was doing it to get attention! I knew that was not the case because she was an only child and had my undivided attention 24-7! Then I took her to see Dr. Ward Poulos and he finally agreed that there was something going on. He referred her to Riley Children's Hospital. At Riley, Dr. Nancy Dodge took on her case. I cannot even tell you how much Dr. Dodge meant to me then..........and still does after all this time. I could not have asked for a more caring doctor. After months of testing, I was told that she had a Degenerative Neurological Disorder (they didn't even have a name for it then.). Ashlee went home to Heaven 9 months after she was diagnosed.

I know firsthand how difficult it is to live with a mitochondrial disease. I know the hardships the family faces. I know the emotional struggles. And I know the heartbreak when you have given all you have and it isn't enough. To this day I still feel as though God blessed me when He gave Ashlee to me and I am honored that he entrusted an Angel to me.

A few years ago, we learned that my darling great-nephew has a mitochondrial disease. That was the first year for Ashlee's Ride......then it was called "For The Love Of Andrew". He is a precious boy who I love very very much. Here is the letter that I wrote to his parents, Jamie and Michael, and gave it to them at "For The Love Of Andrew". To Jamie and Michael and their family....I love you all so very much and I must say you are doing an incredible job!

Here is the letter........by request.

I will only take a few minutes of your time.

When I got the phone call late one night and my sister Rosie told me that they had diagnosed Andrew with a mitochondrial disease, I thought I must be having a terrible nightmare. I distinctly remember begging God to never let another child endure the pain that Ashlee had. I was sure he would grant that. I guess He had other plans.

So we don't know why it happens but it happens. And nothing in the world is worse than having an ill child that you know will not get better.

We are all here for Andrew today but I think the more important thing is that we are here for Michael and Jamie. Because this same disease, however different, took my beautiful daughter, I think I know better than anyone here what they go through on a daily basis. I am not talking about their hourly itinerary. I am talking emotions.

I know how it feels to go to bed at night and lie awake and wonder if your baby will still be with you in the morning or if they will go join the other Angels in God's Kingdom. I know how it feels to watch your baby go thru the pain, knowing you cannot do a darned thing about it. I know the exhaustion – not physical – but mental…and how your mind never stops looking for new ideas to ease the pain or make life easier or carefree for them. I know how it feels to be on a 24 – 7 watch. I know how it feels to have to monitor their every move and breath and sometimes even document every move and breath. I know how it feels to search for one little improvement – however minimal – to help convince yourself they are getting better and maybe they will be the child to beat the odds. I know the pain of knowing that the greatest pain of all is coming and there is nothing you can do to stop it. You can prepare for a thunderstorm, you can prepare for a blizzard. You cannot prepare for that pain.

It has been 17 years since I lost Ashlee and I still feel the pain as if it were yesterday.

When I lost her, everyone kept telling me that it takes someone special to care for and love a disabled child. At the time, I just wanted to tell them to shut up because I didn't feel very special. I could not for the life of me understand why she had to go thru that and why I had to go thru watching her suffer. Well maybe now I know the reason. Maybe it was so I could be here for Jamie and Michael. Maybe so I could sympathize and understand what they are going thru. Only God knows. But we all have our ideas. Jamie, Michael, I am so proud of you both. You are doing an amazing job of caring for and loving Andrew. This shared pain that we both have experienced will bond my heart to yours forever. All of my nieces and nephews are special but we now have a bond that no one can ever understand or change.

I now know that those people were right when they told me it takes someone special to care for and love a disabled child and I think God couldn't have made a better choice than to Bless Jamie and Michael with the gift of Andrew.

Karen

September 2007