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.

Monday, December 16, 2013

The devastating habit and the amazing astronaut

So girl 1 is steadily making herself more and more ill. Today she is running a fever, but still refuses to use the bathroom. I am calling a clinic to make an appointment for her. Someone HAS to take this seriously. She does not eat anything of substance. When she does, it is not enough to help her. She is not eating enough to sustain herself and gets exhausted quickly. I can count her ribs ffs. This is killing me. If the clinics will not take me seriously, I will be taking her to the emergency room,because she is fucking dying.

Girl two has an amazing imagination and is reaching for the stars, quite literally. She took a box, and decorated it. She told me "This is my rocket ship. Do you like it? It is going to take me to the moon someday..." This is the first time she has shown any desire to be in any career as an adult. Interesting that it would be something so difficult to achieve. I hope that if this is a goal for her, that she never gives up...

Sunday, December 8, 2013

Birthday Pancakes

My beautiful big girl turned 7 today. She asked for pancakes for breakfast. She is not even upset that I cannot afford a gift for her. She is so amazing. ..

Saturday, December 7, 2013

Awesomely horrible...

I have some truly awesome kiddos. The smallest one loves punk music. He will dance to it and smile. He even tries to sing along. If he has to go too many days without hearing hours of it, he gets unbearably cranky. Girl 2 is sweet and funny. She know a lot of bigger than her words, and how to use them correctly. She is lovey and cuddly. Her temper is amazing too, but even while she is screaming and stomping her feet (which she does while screaming stomp, stomp, stomp), she will tell you what she is angry about and can be easily brought back into a calmer state.

Girl 1 is pretty amazing too. She is smart, but is always telling herself she can't. I hate that. I think that is the worst four letter word out there...can't. With a little patience and guidance, she sees that she can, ad her face lights up so bright. She is a math wiz, but gets really bored very quickly. She is getting so much better at reading, but she would rather be doing anything else but schooling. She is also amazingly frustrating...

Getting her to do her schoolwork is amazingly difficult and frustrating. It is always a huge fight and she has gotten way behind. When she gets upset or overwhelmed, there are violent meltdowns and extreme tantrums. The worst thing though...well the hardest thing for me to handle is her bathroom problem. I wish there was a way to fix it. She won't go #2. She will hold it until she makes messes in her clothes, but it doesn't even end there. She will hide and use whatever she can get her hands on to clean herself up. This is not limited to her clothes, it extends to her sister's, her brother's, and even mine. 

I am hoping to have medicaid for her soon so I can take her to a doctor. I am just afraid it is going to be fight after fight to get any of them to listen to me. She makes herself sick with it. The last doctor she had said it wasn't a problem...but it is. It is a huge problem. She hardly eats, she is always tired, she never feels well. She gets low grade fevers because her body is fighting to get rid of the waste. Why does this have to be so hard? :(