The day I found out I was pregnant with my first child is the day my life changed forever. I have had several days that changed my life forever in different way but this was the start of something different. Something I wanted very much something at that moment I loved more than anything I had ever loved.
October 8, 2005 was the day I found out I was having a baby. I had only been with Troy for a little over a month and I was terrified he was going to not want to stay with me or not want the baby. Obviously he did even though we were very new in the relationship and honestly I didn't know for 100% if he was the father until we did our first ultrasound it all added up thank god. I was wild party girl before I met Troy.
Skip to the day Jude was born he was the most beautiful baby I had ever seen. He just looked around the room, he didn't cry at first he was just so calm until they started cleaning him that made him mad. After Jude was born our life couldn't be more perfect. We got married had our healthy sweet baby boy then something changed. Something wasn't right with our baby. He was almost 14 months old and couldn't walk. He could stand up to things but couldn't take a step. We got first steps to come in and they got him walking. He was still slow though. My nephew is a year older than Jude and my little cousin was 2 years older and they were jumping around running. Normal 2 and 3 year old behavior. I didn't think anything of it at first we just thought oh he is just being careful. Mommy babies him to much ect.
When the time came to potty train Jude it just did not happen. I took him to the doctor and he blew it off until I told him to run some blood work and see if there might be something wrong. The blood work came back as his liver enzymes were elevated so they ran the test again every 2 weeks for 8 weeks. Each time same results no answers. I finally threw a big fit because my 3 year old son was terrified of the doctor from all the pokes and we had no answers. I was so scared. So they sent him to Riley Hospital to a gastronologist. While in with her she told us in her years of being a doctor she had had 8 children come to her with the same symptoms and they had muscular dystrohy. She ordered the blood work and there is was. Now to find what kind.
After we get the confirmation he has a type of muscular dystrophy we start going to a neurologist. Dr. Hamati. She is an amazing pediatric neurologist. She tells us he needs some genetic testing done to figure out what type of MD he has so we do that. It doesn't take but a few weeks for the results to come in. I can remember sitting in that doctors off to this day. It was January 11, 2011. I had my grandma with me and Jude. I was a nervous wreck. She walks in and says the words no parent wants to ever here. Your child has Duchenne Muscular Dystrophy. I sat there and said ok. I didn't know what DMD was. She gave me some information and set up another appointment and we left.
When I get home I start reading up on Duchenne Muscular Dystrophy and my heart falls into the ultimate depths of hell. My son only had a life expectancy of 25 years. My sweet baby boy!!! Then I read it is passed down from the mother that made me lose my mind. Thinking I gave this to my baby. What have I done I can't live with myself if he dies knowing it was my fault. I had so many emotions. So many thoughts of how could this be happening to us.
I ended up also having some genetic testing done to see if I was a carrier for DMD. I was not a carrier so the guilt I had felt was mostly gone. Then the anger of why hit. Why did my son have this horrible disease? What did I do for god to make my child sick? So many questions no answers!!
I will tell you I fell into the biggest hole ever. Some days it was hard to even get out of bed but I knew I had to to take care of my son. He needed me more than ever and I needed him. Jude saved my life. I tell him this all the time. When I found out I was pregnant with him I was in such a deep depression and felt so alone. I partied a lot and was going down a downward spiral. After Jude's diagnosis I had those feelings of despair and depression coming back.
Jude is now 13. we have had a roller coaster ride since his diagnosis. On top of his DMD he has behavior issues. He has to take lots of medicine for that for his DMD and also for his heart.We have been very lucky with Jude on the most part. He is still mobile. His heart is stable with meds and the only breathing equipment he needs is a bi-pap.
To tell you a little about DMD it is the most common type of MD in children. Mostly boys it does affect girls but that is rare. DMD is passed down by the mother usually but there are cases where they are just born with it. Usually by the age of 12 the child loses their ability to walk and has to be in a power chair. It affects their heart and lungs. Several children a year pass away from complications from just getting a cold. A common cold is deadly to our children. Our children go into heart failure at young ages. The list goes on and on.
So this was just a little bit about some of the things going on. Just a smidge. There is much much more. This diagnosis was a huge life changer to us. It was not planned it was not something we wanted but it is something we live with. Something we have to deal with on a daily basis. Something that has contributed to my depression and weight gain. Something I pray every day we will get a cure for. We can only take this life one day at a time.
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