So, this raising a kid with LCHAD is tough. There are no models to follow. There is no research to help. There simply aren't kids like her.
Next add in puberty! WHEW! I knew it might be tough but suddenly we have found ourselves in unexplored territory and I feel like I am paddling upstream with out a paddle.
I know that I don't have answers. I never have. It just seems that the stakes are higher because we have helped her to believe that she is mostly "normal". Now that she is not feeling "normal" at all and just wants to be normal (6 months later) and we seem no closer to having answers for her I am at a loss. Sometimes I have to fight the feeling that I have mislead her. Maybe I shouldn't have helped to live her life to the fullest (seriously, if you have ever met her you would know that she is taking that charge all on her own, we just hope we are guiding her well).
I fight the fear that soon our time with her could be over. I know there are no guarantees. There never were. But it is strange for things to be going along well. I mean WELL. Like the best ever in her life for the longest time in her life and suddenly to change it all in one morning.
I like rules. We had gotten good at living by the rules we had found helpful for so long. The rules seem to have changed (or are changing) and no one told us where to find out what the new ones are. It is unsettling.
I'm the mom. I'm suppose to take care of it all. I'm suppose to help her. I'm suppose to keep big sister's life moving along well. I'm suppose to help our family thrive. I'm suppose to help everyone else know how to help her.
It's hard. Very hard. I fight crying so I won't "loose control" and not be ready for what is next. I guess I have always worried that once I start I won't be able to stop. I also don't want the rest of our family and friends "worrying" too much. I don't want my doubts and fears to leak out onto them. I want them to enjoy her life and theirs to the fullest. One day I tried to workout. Things were bad and I knew it but I was trying to do the right thing and workout anyway. I LOST it. You know, the ugly cry kind. I attempted to join the group and just keep going. Well I couldn't continue and it was yoga, my least disliked form of exercise (seriously, I like yoga day. I needed yoga day).
I have days where I get all the basics done (dishes, laundry, food for her, and even the family) with the hopes of really getting on top of things. Then I have days were I just collapse (yep, I've skipped working out a few times too).
The truth is.... it is stressful. I don't always know how to cope. Yes I have a wonderful husband who does try. Sadly this is a mom-heavy gig. I can bounce ideas off of him and ask his opinion but he is operating with less information than I do and he's off working hard just to make sure our family can pay for all the needs and have health insurance. I also have a great family and friend support base. It is hard to talk to them sometimes because there is less info and more worry to pass along than anything. I don't have answers.
I guess that's it isn't it. I don't have answers. For her, for the doctors, for the sweet people in our lives that want to know how to help.
YES, some things are easier. Nothing can compare to the hard times of those early days with a toddler and a preschooler in the hospital. My girl (a teenager now) is amazingly good at entertaining herself in the hospital. Technology helps. When we can't find a dvd to watch or a channel with anything on we find something on Netflix. She can text and call friends. She can play video games on her phone or Kindle. She can manage just fine while I take a shower or run to grab some food from downstairs. There are less fears of the everyday things in the hospital. She knows as much or more than the staff about how things should be done and who should do them.
The problem is HER questions are growing up too. She doesn't understand (what 13-year-old does) and to add LCHAD on top where there are no answers is hard.
I would love to tell you I was good at telling her how to hold on to the Lord in all the right ways. I'm not. Often I'm too tired or too numb to say anything. I often answer with the same truth that I have always answered with but she isn't probably old enough to really, truly understand. I'm 45 and I'm not sure I am. It also seems like there is a lot at stake. This is a crucial time in her growing up. I want to keep the amazing, spunky, fire-ball that has always taken her life by storm and help her keep her positive attitude in tact for the long haul.
There are no answers and no guarantees.
I keep saying over and over.... "just take today one step at a time". Looking back it is hard to imagine that we have come so far. I do wonder what is ahead....
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