The Road so far…

I haven’t talked about my journey with many people. Only a few select friends know and of course my family. This journey began in October but at the time, we did not know what it was. This journey, is not just my own, it is my Mother’s as well. This, like many others, is our story.

I have talked about my mom in previous blogs before and by now most people know how much she means to me. She raised me alone for 14 years and it wasn’t always easy. We did struggle a lot, but the good times outweighed the bad. No matter what though, we were always together and we always made it. I wasn’t an easy teenager but that’s beside the point. Whatever problems we had, we always worked out and no matter what life through our way, we fixed it. Time moves on. I matured and now I have a beautiful family of my own. There were many times when I felt like a failure as a daughter though. I always thought I could do better, do more. Not sure how, but I guess that’s just how I felt. I do the best that I can and I do whatever I can. I’m not perfect and we don’t see eye to eye on many subjects, but hey, what Mother/Daughter does? There is always bound to be something right?

Skipping ahead many years. Mom developed many medical problems over the course of those years, her health was starting to fail.  Not seriously, but it was getting harder and harder to do certain things as she grew older. October 2014 rolls around and one day she’s doing great. Talking normally, walking, she was even babysitting my nephew. Then out of the blue, the next day I’m talking to her and she can barely talk. Barely breathe. She’s gasping for air just so she can get one sentence out. Take her to her doctor almost weekly because this is concerning. Things aren’t right and we’re not getting answers. She ends up in the hospital in December and she’s treated for pain, but still, no one does anything about the speech or the lack of mobility, or anything else I mentioned. They keep her over night for observations but release her the next day. Frustrated we go back to the doctor and demand this be looked at. A referral is sent to an Internal Medicine specialist and we’re hoping he can help. Meds are adjusted and others are cut. Other tests are ordered but the wait list is over 6 months. January of 2015 we’re back at the hospital. Since December she had fallen a few times at home, but when we again repeat everything she’s only treated for fatigue and sent home that night. Forget frustration, by now anger is setting in.

March comes and we’re once more back at the hospital. This time we refuse to let them discharge her until we have answers. More extensive testing is done this time and a week, nearly two weeks later we’re called in by the Neurologist for a family sit down to hear the results of all the tests she went through. My mother, I, and my aunt and uncle attend this meeting, but none of us expected to hear the words the doctor spoke. My mother was diagnosed with ALS or otherwise known as Lou Gehrig’s disease. That night my world came tumbling down. I was shattered. We all were. We know there is no cure for ALS. We know what will happen. Now we have to learn to cope with the emotions and feelings that come with this news.

Since then, my Mother’s health has gotten progressively worse. The ALS is fast. Given her age and all her other medical problems, I expected this. I hoped it wouldn’t be so quick…but things are getting worse day by day. Things are getting harder and harder for my Mother. It is hard for me to watch her go through this. This beautiful strong woman that has been my rock my entire life is weak. So many changes have happened and I can see the fear in her eyes whenever something new has to happen to make life a little bit easier for her. It crushes me. It crushes all of us. We are doing everything imaginable to help her have a few more good years with us. I can only hope we succeed.

The emotions though are the hardest. I have had one peaceful night of sleep since March where there were no dreams, no nightmares. No thoughts at all. Most nights I can’t sleep. I see my mom, I see a future without her, I see so many other things and then the nightmares begin. I don’t eat very much either. I know I have to be the strong one. She needs me. I do whatever I can to be there for her. I try to stay strong for her. I try not to show her my own fear and worries. There are times when I have my weak moments around her, but I do whatever I can to not show it. I come home and I cry in silence. I deal with it on my own and as best as I can. I have been told by many that they are there for me and that they are thinking of me and if I need anything, just let them know. I can’t though. I feel like a burden. I turn to my husband and I find comfort in the arms of my children…but other than that…I keep it to myself. I guess this blog is my way of releasing some of those emotions and I can only hope those reading it can finally understand what it is I am truly going through right. Then there is the children. Do you know how hard it is to explain to your kids what is happening with their Grandmother? What is going to happen to her? Not very easy to do. They know now what to expect and what will eventually happen. It’s heart breaking though to see their beautiful faces full of fear and tears. Makes me cry even more. We are all going to be very lost without her. If I could just stop thinking about the future, then I think I wouldn’t be such an emotional wreck. The reality of it is though, she is going to be gone and we are going to have to find a way to live without her. I won’t be able to pick up the phone to talk to her. I won’t be able to go see her. I won’t be able to hear all the stories of her childhood. I won’t be able to see her and my kids together…so many things I won’t be able to do. How do I live my life without her? How do I learn to move forward?

Writing is supposed to be one of the best forms of therapy. I’m glad I got this out and I hope anyone else that is in the same boat as me can find comfort in knowing you’re not alone. I understand your feelings and your fear. I share them with you.

My hero will one day be an angel, but for now I have HOPE that a cure for ALS will be found.

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