Friday, December 20, 2013

What it is...and isn't

So I am sitting here with my beautiful children, and know that they are the best thing in my life. I am watching my brilliant seven year old complete logic puzzles (which is amazing) while her younger brother and sister nap. To know what she goes through breaks my heart, but I know that she is amazing.Life is hard on all of us right now, but so much more difficult for her. 

Yule time is coming, and it is going to be amazing. We are so broke. I did not think we were going to have anything. i managed to make magic work, with the help of an amazing man. They will have so many gifts to open they are not going to know what to do with themselves. Because I am sneaky and clever, we will also have an amazing roast for dinner with lots of yummy desserts. 

They miss Virginia. I never thought they would as much as the older one begged to come back to Colorado, but they are so unhappy here. Their dad is not very involved, even when he is around. He has a tendency to be a bit of a jerk, especially to the oldest. She deserves so much better, and I have to find a way to make that happen.

With very little money for food, and someone being so irresponsible that we can barely cover the rent and bills (leaving me penniless throughout the month although he certainly goes without nothing), things certainly have to change. This is even more true now that I know what my oldest girl is suffering with. Now she requires a special diet...and medicine. Not all of it is inexpensive.

I cannot praise Children's Hospital enough. These people took me seriously, and know children well enough to not dismiss my concerns as so many other doctors have. They knew what it was before they even ran any tests. They gave me a name for her problem, and gave me the tools to fix it. And Nurse Pixie (yes, that absolutely IS her name, but I may be spelling it wrong), I cannot thank you enough. You were kind to my daughter, but firm. That is what she needs. You were so understanding.

Life is never without its challenges, and if we give up we will never know why. It would be so much easier without the other things, but the fight is worth fighting I think. My older daughter is fighting a good fight now. Trying to retrain herself, even though we have yet to be able to get the medicine and special food she needs. She is asking for things like green beans for snacks. She is making herself do what she has for so long fought against...all by herself. The pride I feel for her is only reflected in her beaming face every time. I am so so proud of matter what happens and how hard it may get.

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