When Rage and Sorrow Return

She will always be daddy's girl. From the moment she was born these two have had a special connection. 

She wakes up angry. She lashes out at Elizabeth and me; she is personal in her attacks. I know something is wrong, but I cannot figure out what it is or why she is acting this way. 

It isn't until later on in the day that it dawns on me. I don't know why I didn't realize it earlier. Her disease is acting up. It is the only explanation for her cruelty today. Something is happening in her body that is scaring her, and her only way to express that without saying it directly is to attack Elizabeth and me. After all, we are closest to her. 

I let her be for a little while longer. In the late afternoon I ask her what is wrong. Using different words, I ask her if her body is betraying her. Again. She tells me that her legs are feeling weak. Just like the last time she relapsed. 

The leg weakness lasts about 24 hours. She wakes up the next morning, and when asked, says that she is feeling better. 

I don't ask how she is doing over the course of the days that follow the leg weakness. I don't want to keep bringing the issue up. I want to let her move on from that scary sensation of not knowing if her legs are going to support her taking the next step, or walking down the staircase. I look for signs in her behavior instead. Really, I want to ask her 500 times a day how she is feeling, but she would only hate this. It would make her more hesitant to share when her body is acting up. She doesn't want to be babied. 

 I know that her ability to walk is something that this disease could take away from her. I am so afraid that this is the next piece of her body that this disease is going to take away use of. I don't want her to end up using a cane permanently or in a wheelchair, but each time her legs give out on her and become weak I cannot help but think that we are one step closer to that fate. Maybe not today, or tomorrow, or even next year, but some time sooner than I ever would have wanted for my child. I want her to walk down the aisle, should she choose to get married. I want her to be able to care for the animals in her sanctuary and ride her horses. I want her to be able to run after the tribe of children she someday hopes to have. I don't want her to be in a wheelchair. This disease has taken enough already. 

 I know that when we get to that bridge we will cross it, just like we did when she lost her vision, but   sometimes I just cannot see my way through this possibility. I cannot muster up the 'We can do it' mentality. All I can think about is that when that day comes I won't know what I can do to make it better. The wall of despair will seem insurmountable. 

 I find myself dealing with my own emotions, and I know that I cannot handle hers as well right now. I need to pull myself together to be the best mom I can be to her. I cannot do that in the state of mind that I am currently in. 

I find myself vacillating between eyes filling up with tears of sorrow and rage. Oh, my old friend rage.  That old volcano of fury has been lying dormant for a while. I have been holding hands with rage for the last 7 years. It has been so long that it doesn't even hurt any more when the lava of anger bursts through the scab my body has been trying to protect since the last time it erupted in my heart. 

I no longer try to suppress my rage at the injustice of my daughter living with a beast inside of her. I have learned to let it erupt. To feel its heat and to let it burn within me. I go about my days and no one knows the heat that seethes inside of me. No one knows that I prepare for battle to fight this bastard of a disease to protect and save my daughter. As the lava flows and the fury seethes, I plan create my battle plan and I prep myself for war. I try to build armor so that it can not only protect myself, but protect my daughter too. 

Being with her three siblings is one of Sarah's favorite things to do.

Except that deep down I know...

I know that no matter how many times I go to war with this beast, that it will always win. I am powerless to stop what happens inside my daughter's body. 

There is no word to describe this kind of sorrow. I feel a primal need to let out a guttural moan of anguish, but the sound would be so ugly that I dare not do it in the company of myself or others. I am afraid to let it out. 

In the beginning of our walk with this illness I read a lot. I wanted to know how to defeat this monster, and so reading was how I prepped for battle. I think one of the things that stood out the most, the thing that has haunted me for these last 7 years, is that while her young body could adapt to having a disease as she grew from a child to an adult better than an adult that was newly meeting her beast, the cumulative affect of having this disease show up so young was a major disadvantage.  

This is why sorrow and anger grip hold of me when her disease actively shows itself - I don't want it to take away any more from her than it already has; Yet, I am powerless to stop it. 

I am a Mother. I am supposed to be able to explain the world to my children. I am supposed to be able to fix boo-boos and mend broken bodies. Except in this instance, I cannot. The only thing I can do is to collect the pieces of my broken heart and try to mend it over and over, so that I can better collect my daughter's broken heart and teach her how to piece together what should have never broken in this way to begin with. 

 

She is so good with animals. She will make a great sanctuary owner some day.