4 yrs ago I decided that my marriage of 2 yrs was not working and it was best to walk away and move on with my life. Just after that , I found out our daughter who was 20 months old had Autism. It was one of the worst days of my life. I went through all the parts of greiving, denial , sadness, ect.. and then I knew I had to get out of my depression over my marriage not working and my daughters diagnoses and do what I had to to help my daughter be the best she can be. She was lucky and started therapy right away and had the most awesome team of workers I could have asked for . It was a long hard struggle but she has come sooooo far and today you would not know she had be diagnosed with Autism. I am so thankful and greatful to god and all my family and the Autism Centre that worked with her everyday for 3 yrs. She is now almost 6 and in kindergarten.
Almost 2 yrs ago now she fell outside and hurt her knee, she had always been clumsy but we always thought it was part of her Autism. They put her in a cast and checked her again almost two weeks later, still swelling and pain , they sent her to a specialist and he did an MRI. He suspected Juvenile Arthritis , we were sent to the IWK to a pediatric rhumatologist , who confirmed she had Juvenile Arthritis. She was put on an anti inflamitory and joint injections were scheduled. They however did not help her at all. She had gone from 2 joints to 20 joints affected in a year. We have made several trips to the IWK and from our home it is 4 -4 1/2 hr drive. As of right now we have started a weekly methotrexate injection , she had been on the oral methotrexate but it was not helping either.
We also found out she has an immune deficiency, her body has no A antibodies in her blood, so it is hard to fight of infection or virus's. She gets sick a lot and when she does it takes her a bit longer to get over it.
She has not had a normal childhood, she has spent her days in therapy and now spends her days in pain, taking meds, needles and blood work , doctors appointments all while trying to be a normal child like her friends. It is a struggle as a mom to have a child who all they want is to be normal and fought to be normal and overcome Autism as much as any child can over come Autism.I wanted to give her something that was special, that we could enjoy as a family, that would make her childhood better so I decided to apply for a wish to be granted ...or to see if she qualified for one ..there is a foundation that grants 80% of their wishes to chronically ill children, and her doctor told me to apply. We have started the process, filled out the forms and she has thought about her wish . She wants to go on a Disney Cruise. I really think this would help her feel like a normal child , to go and have fun and be a kid. Not to have to think about doctors and appointments. She loves princesses like most 5 yr old girls do and I know she would love this vacation. Being a single mom I know I could never afford to take her , so this would be an oppurtunity of a lifetime for us.
I am in the process of learning how to give my daughter her once a week needle. It was scary but I feel like being able to give it at home will be better for her then having to go to the hospital to have it done. I have done it once so far and it was not as bad as I figured it to be, sometimes you just do what ya gotta do. ( suck it up as I say ) !!
We are going back to the IWK in April for a checkup, to see if this injection is helping , if not there is one more set of drugs they can give. They are called biologic agents, they are a very strong drug with alot of side effects. So I am hoping and praying to god everyday that she will start to see improvement with this drug.
Being a mom is a tough job, going it alone and having a sick child is sooo very tough but I love my job being a mom to the most wonderful , loving, caring , giving, angel. She makes me laugh and cry and smile everyday . and I would not trade being her mom for the world , even on the not so good days , when she is in pain and cannot finish her homework, when she cannot sleep due to joint pain, when she is acting up cause she knows soon there is a trip to the hospital coming up. She is the light of my life and even though her father and I are no longer together and I had wished I had never met him , I cannot regret it cause I have the best gift I could have ever wished for.
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