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Tuesday, February 1, 2011

Lets start at the beginning when we started to noticed Meagan was different

When you are pregnant you fantasize about your unborn child and all the possibilities but never do you know what can really happen. Meagan was about nine months old when her doctor said he was concerned that she still had not crawled or sat up. I wasn't worried because I figured it was because I wanted to carry her everywhere and that was her way of keeping things that way. But I was in denial. Denial is like a drug, once your hooked you can't change the way you feel and see things. For my husband he was devastated that she had to get glasses. Meagan was nine months old when we noticed she was a little cross eyed. Adam took her to an eye doctor and he said she needed glasses. Adam took care of this but he was devastated because he had to wear glasses as a child and children are cruel, he did not want her to go through this. The first night she wore her glasses he got really drunk with my cousin Scott. I came home from work and we went to Fred Meyer to pick up dinner and Adam was wandering the store, drunk and crying. I have seen him cry three other times in our lives together, at this point we had been together five plus years. The first time I saw him cry was when his grandfather died, then when we got married and the third was when our daughter was born. To see him so devastated shook me to the core. He is always so stoic and quiet about everything. It is not often he shows his feelings like this. I remember going to the  furniture department and sitting in the chairs and holding him when he cried. It was a profound moment. He kept saying he ruined our child because he gave her his vision. I told him no you didn't its my family that has the cross eyed gene, my sister was born with crossed eyes and had to have surgery and that it was no body's fault and that she is perfect, I told him to look at her, she is perfect. He finally came around, but that was the first of many moments in Meagan's life that were scary. During this time we lived in Renton and were away from his family for the first time, we were alone and felt like we had no one there to help us. I had just started a new job and could not miss any work. Adam was laid off alot working for the union so he was home with Meagan alot. About two months later a job came available in Tacoma so we moved back home where we could have the support of Adam's parents. They were always the ones who helped us through everything during this point in our lives and still do. Meagan was sick alot the next few months with ear infections and other minor illnesses, but we were on the edge. I started to take her to doctor for everything and finally the doctor referred us to Mary Bridge for a physical evaluation. The therapist we worked with noticed other problems and we started the testing process to figure out what was wrong with our angel. The first test she was given was a MRI. This was especially scary because of the sedation. Anytime you are put to sleep its scary because there is always the chance that you could not wake up. Also there was this other little girl there. She was severely disabled. I remembered watching her and holding my baby thinking I felt so sorry for that little girls parents. She was in a wheelchair and had to have her mouth suctioned because she couldn't breath and was too sick to receive her scan. I was in tears watching this beautiful little child get suctioned. It was awful. I thought to myself, will I have to go through that someday? Then came the needles. They had to put in a IV to administer the drugs to put her to sleep. She cried when they stuck her with the needle, but smiled as they administered the anesthesia, which was a relief to me. We went to the cafeteria to wait while she had her scan. It was over quickly and she woke as happy as she went to sleep. I held her relieved she was awake and made it through the process. The nurses said we would not know what the scan results were for a couple of weeks and then we would meet with the doctor and he would go over the results. After a couple of weeks we came back to meet with the specialist Dr. Tripp at Mary Bridge Children's Hospital. The fist thing I noticed was that there was someone else I did not know in the room with us, which instantly made me uncomfortable. The doctor started telling us about her brain scan and what he seen in the results and talked about a white brain matter abnormality. He said he was going to diagnose her with this disease called juvenile onset mitochondrial leukodistrophies. At this point I pretty much blanked out everything and had to get out of the room. I went into the bathroom and cried. Once I was composed again I came back into the room. Adam kept asking questions like, "What does this mean for her future?" "Will she live long?" I couldn't take it anymore so I played with my daughter and cried silently to myself, feeling lost and devastated. "How could things have turned out this way?" "What did I do so wrong to deserve this to happen to my child?" The strange women in the room with us was a social worker, apparently when a doctor gives parents bad news about a child they are there to make sure the child will be cared for and not neglected. I was offended by her presence in the room, because I loved my child more than my own life and would give my life at any moment to give her a normal one. The appointment was over and we went home numb and confused. I couldn't even process what was just said to me, so what I did was look it up on the Internet and what I found will forever horrify me. The doctor just diagnosed my child with a death sentence. I cried for days. I had to go to work putting on a happy face when the truth was I was dying inside. It would be eight weeks before we would know if she really had this progressive neurodegeneraitive disease where she would become quadriplegic, blind, fed through a feeding tube and then eventually die. I had actually called my insurance agent and took out a life insurance policy for Meagan so that Adam could be taken care of when she died, because I knew that when she died, I would soon follow. I could not live in a world that did not have her in it. I had it all planned out. After her funeral I would go to sleep and never wake up and the insurance money I bought would take care of Adam the rest of his life. I knew this would devastate him but if she had this disease it is only past on by mothers and that would mean I was a carrier and should never be allowed to have more children and I wanted him the chance at another life and to not be stuck with me. I was damaged and felt the world biggest failure. You are put on the earth to procreate and I could not even do that right. It was the longest eight weeks in my life and I would not have made it through it without my husband.

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