Ashlynn starts chemotherapy on August 13th after receiving a port. She will receive treatment once a week for about a year.
For those of you whom do not know what NF is. Neurofibromatosis is one of the most common disease you have never heard of. 1 in 3,500 people have NF. The disease varies with each person, some will have it extremely bad. Some people have NF for their entire lives and never even know about it.
With all of this information in my head I'm very...off the wall so to say. I'm heartbroken to my very core, NF is not deadly. Some of the symptoms in their worse condition may be however. Yet, I find myself grieving for my daughter. Afraid for her future, afraid for the pain, the tests, the treatments. I cannot find words to describe how I even feel. I lack the vocabulary to describe the deep down hurt I hold. The only way I can describe it is, some part of my soul has been dislodged and will never return.
I stress daily to the point I cannot think of anything else but, the chemotherapy Ashlynn will go through. How will it affect my baby? How much more pain will she have to be in throughout her lifetime. Yet again, I realize she might be a lucky one, she might never experience any other symptom. But, even the risk alone scares me.
This is not a pity blog honestly. I'm hoping that by putting my thoughts out there clear as day for the world to see, another Mother whom might experience this will be able to say "I'm not alone." Because Alone is how I feel.
Ashlynn's other family members seem to down play a lot of the disease. They do not understand why I grieve when she has the chance of being fine. They lecture me about remaining strong. Trust me...you can be strong on the outside for your child yet crumble on the inside.
Her father is almost always there, and seems optimistic about getting her better. Yet, I'm not comfortable sitting down with him and throwing all my feelings out there. If you have ever felt that way...I'm sorry and you are more than welcome to email me and throw them all out there. I do not judge, I listen and I'm just there.
After all this venting...here are my goals for tomorrow.
1. Pack our bags for next weeks trip to the University.
2. Make sure Ashlynn gets to enjoy the county fair and just have some carefree time with her dad.
3. Go back to the library and look up more information at the disease.
4. Pray...and Pray some more
5. Spend atleast one hour not thinking of anything to do with NF1.
My quote of the day for you and myself is...
"Even the darkest night will end and the sun will rise."
-Victor Hugo Les Miserables
