Being sad...

Today, I don't want to be matter of fact. Or compliant. Or accepting of everything. Today, I want to scream and shout and cry. And vent. Today, I'm sad. I'm so very very sad for my daughter. Yes, it could've been worse. We could've been dealing with cancer. Or full-blown Spina Bifida. Or a syndrome that attacks cognitive functions. There's so many, many things that's worse than what my daughter has. But today I wanna be selfish and not think about those parents and children that deal with something worse than what we deal with. Today, I want to be selfish, and just cry for our losses. Just cry for what my daughter does have to deal with.

It's so horrible. Of all things....why the bowels and bladder? Especially the bowels? Why...why...why? She's such a dainty, beautiful, fragile, sweet and kind little thing. Why did this have to happen to her? WHY??? It's not fair. She doesn't deserve this! Nobody does, but especially not such a sweet and kind little girl!

Things are going so bad for her. So very bad. And it makes me just wanna crawl into a corner and cry my heart out. She's being so strong and optimistic and happy even when facing these horrible things that's happening to her. How did it happen that she became so much stronger than her mom? When did that happen? She's handling everything so superbly. Both her psychologist and teacher commented to me in less than a week, how amazed they are at how well she's handling it all. How mature she's about it (even though she's actually emotionally less mature than children her age!) and how well she's coping. Yes, it makes me grateful.

But then I hear how she's having accidents in class, and being called out on it, and it breaks my heart into a thousand little pieces. This is so private. It's always been me and her against the world with this. Now, it's just her. Standing alone. And it makes me so very very sad for her.

Fortunately, she has a GREAT teacher, who's really working WITH us on this, and who's supporting Boeboe 100%. It makes a huge difference. It could so easily have been a teacher that gets put off totally and blamed the child. This teacher really gets it that it's not in Boeboe's control, and that she's honestly trying her best here.

I'm so scared that Boeboe's going to be bullied about this. Being teased is bad enough. But things like this can so easily lead to being bullied. I know the school would help us and squash things the moment they start. But still, I'm scared for my beautiful little girl. She's so precious. Why did this have to happen to her? Why did she have to get this horrible, horrible disease? Or condition? Or whatever you can call it. Defect. Why did she have to be the one to get this? And get it so bad? And why were the doctors in our country so UNINFORMED? I've taken her to so many, many specialist, from age 5. And NO ONE ever knew what was wrong. They just all assumed she'll outgrow this. That she's naughty. Or that it's just a developmental thing. WHY WHY WHY. So many years have been lost. She's so much worse off today, than 2 years ago. So MUCH worse off. So much function lost.

I'm so sad. I'm so angry. I'm so scared.

What's going to lie in her future? How will we handle all of this? How are we going to cope? How will her life be? I don't know. I'm not good with the unknown. I just want her to be happy. To do well in school. To have friends. To marry someone good one day. To have children. She'll be such a great mommy. She's always talking about how she just wanna be a teacher and a mommy one day. She wants 1 little boy, and twin little girls. And I wish I could give her the world. But I can't. And it makes me sad.

Why did this have to happen? Why couldn't she be as normal and perfect as her 2 brothers? Life is so much easier for them. They don't need therapists and psychologists and doctor visits and tests and operations and nappies and and and. I don't wish any of that on my boys. Of course not. Life is difficult and hard enough as it is today, for any child. But why did it have to be so much worse, so much more difficult, for my beautiful little girl? It's so unfair. It's not right. It shouldn't be like this. What went wrong? Where did it go wrong? Why did it go wrong?

:(   :(   :(   :(   :(