All I want for Christmas...

Twenty-two days until Christmas...

Today I woke up early to become a Floridian, I am official. Before I left for the DMV, mom told me she had an cheese omelet and was eating again (she was taking in her formula from her feeding tube). I wish I could describe to you how excited the three of us (Mom, Jim and I) get when my mom has a good day of nutrition. After she told me about her breakfast she told me she was feeling better, getting up and sitting down without a big problem. That made so happy. She showed me then she dug into a Thrive ice cream. It is made for patients with ALS, packed with calories and nutrients. More importantly, it is dairy free. Dairy causes mucus which is again not good for those living with ALS. She finished the whole thing. After the long wait at the DMV, Jim and I grabbed lunch and brought home mom some lunch. She ate it all!! Keeping up these calories makes me so happy because it shows me that mom isn't giving up, she is fighting harder and harder.

This evening when I came in from the gym I sat with my mom and listened to her. I learn a lot from what she has to say, it helps me understand what is going on in her mind and what I could do to help. We talked about how unexplainable the pain is for her, having RA and having to deal with pain all her life and then throwing on a terminal illness like ALS is not a walk in the park or a walk to the mailbox. It is a tough, rough hike through a natural disaster. She told me that she feels like her youth has been taken from her and how she feels like she lost her independence. I agree. I see that, I feel that for her. She is only 55 years old and can't even go to the grocery store and walk the isles without becoming out of breath. I hate to say this but it makes me really dislike the obese lazy people who decide to use wheel chairs to get around and not live a healthy life when they are given the opportunity to do so, unlike my mom who has an illness that took that from her.

I understand what my mom is saying when she says ALS has taken her youth. The way she walks, talks, eats, sleeps, and even breathes has changed completely, as if she is much older than she is. I will tell you this though, she still looks more youthful than ever and has the sense of humor of a 20-something year-old. Although I wish she could be humorous and happy all the time, she has her moments. Tonight she had one when she told me all of this. She cried as I held back my tears for when I wrote this. Blogging helps me release all the sadness inside of me. It makes me smile knowing I can share this with all of you because I am here with her through all of this. I get to hold her hand through this journey.

Tomorrow, she has the nurse I spoke about a few posts ago coming. She called this evening saying she has a box of benecalorie from mom which I am excited about. I will let you all know how everything goes.


All I want for Christmas is a cure for ALS.