I can't tell you how many times I have written a post and kept it as a draft. 4 incomplete posts. All having to do with our most recent Make a Wish trip. I can't bring myself to describe what an amazing opportunity it was. I could share every detail of it but to some it would seem drawn out. I'm a detailed kind of person. I remember each moment like it just happened. We could never duplicate this trip because it was special in so many ways. 800 pictures taken in all and some were note worthy. It doesn't matter because each frame and shot bring me back to the moment. Whether it be a grimace, sigh, a blurry shot, I can still see what caused the grimace, why I was so tired, and the smile on Jasmine's face through the blurriness. These are moments that can not be replaced.
Jasmine was a new kid, different. She came out of her shell. She was smiling like she did when she was 1. Before she was diagnosed with any lifetime diagnosis, she smiled genuinely and frequently. She was a happy baby. The smile is still there but it takes a different kind of pleasing. It takes more to please a child as they get older. For her it was, meeting her characters in real life. She looks at those pictures and remembers it clearly. She may not be able to talk but I can see it in her expression like she knows what moment unfolds next. It's priceless. She remembers Amanda. All I have to say is Ms. Amanda. She can point her out in a photo that she's never seen.
The moment was great because we were also relaxed. Kids pick up on your tension and stress. When neither of those things are there, its liberating for you as well as your kids. This seems to have been the case while we were in Orlando.
So here we are to face reality again. Wonderful memories at the forefront of some bad ones. The roller coaster ride continues effortlessly through its ups, downs, twist and turns. Financial woes are always a topic of discussion on a daily basis. Jasmine's education and autism are among the hot topics. Our family in its entirety has weighed heavy on my mind.
You always here of people going to counseling for a number of reasons. It had occurred to me earlier that it might be a good idea for us to discuss with a professional the stress related to Jasmine's health and well being. I never really acted on it before. There was never enough time or money to do it. I have finally called our insurance to see if we were covered for such a thing. Thankfully we are and as far as time goes, well, it will just have to be made. I truly think if something is important to you, you will do all you can to make it work or in our case, make the time. This family needs to be fixed or at the least needs a stronger support system. In some ways, I feel weak by having to fall into this realm of need. I'm thinking even the strong need help. I saw a quote on someones facebook that made me think. I have no idea as to who wrote it. It sort of went like, crying is not always a sign of weakness, but that they have been strong for too long. I guess, I realized that crying my heart out in words and on "digital paper" is not all that is needed. It's a constructive way to release emotion but not a good way of sorting and solving. This is where therapy comes in. I think it will at the least be a positive move in the right direction and a healthier one. I don't want the negative to creep up on us and be irreversible. I fear that their will not be much of a family left if we continue down this path. The wood is weathered and splintering. If left untreated, it will weaken. The end result when enough pressure is applied is breakage.
This blog is about our story and journey down the road of our three year olds chemotherapy treatment. It will be 36 weeks and we know not what lies ahead.
About Me
- Leo8gstcancer
- Palmyra, VA, United States
- Jasmine is our special miracle baby. She was born 17 weeks early and stayed in the neonatal intensive care unit for three and half months. She came home with oxygen for a short time and was free and clear for a while. She started out with the usual babbling a couple of months behind the learning curve due to her developmental delay. At 16 months, we were told she needed hearing aides for her mild to moderate hearing loss. It was then we stopped hearing anything from her. At age 2, we found out she was diagnosed with Autism Spectrum Disorder (ASD). Jasmine is non verbal autistic. In the beginning of 2010, she had been hospitalized and diagnosed with viral pneumonia. One week later, she was admitted again for bacterial pneumonia. We spent nearly a month in the hospital overall. We found out she had cysts in her left lung. In September after much debate and continuous problems, the mass and all of her lower left lung lobe had been removed surgically. It was just not any mass but a cancerous one. Jasmine has Pleuropulmonary Blastoma (PPB) -Type II.
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