Frozen

Its funny that at a time in my life where I probably have the most to say that actually needs to be remembered and recorded, I hardly have the time to sit and write.

How do I describe what I am going through?

There is no way to capture the essence of my life right now. Surprisingly its not what I thought it would be...hard, sad, and painful. It can be those things and sometimes it is but for the most part the only way I can describe it is sweet.

My life is about basics and caring for those that I love more than I love myself and that can not care for themselves. I have to force myself to remember that life is still happening outside of our experience here and that the world is still moving forward as is time. Its surreal, like I am frozen inside of a snow globe hardly cognizant of the outside world. I am sheltered from the business, hustle, and noise of modern life. I live in a wonderland of beautiful Christmas decorations with no outside responsibilities and expectations. I have been able to give my whole life and heart over to what Christmas is really about, love and giving.

My Mom's condition continues to worsen at an alarming rate. I look back a week ago and cant believe the difference and the changes in such a short amount of time. Her left hand and arm are completely useless, so much so that I lovingly named her arm Limpy :) Her right hand is weakening. Writing and small motor skills are becoming increasingly more difficult. She can not eat very much and we feed her mostly through her feeding tube. She cant suck out of a straw. She can not get out of a chair unassisted, or climb the stairs without someone there for support. The scariest part for me is how often she is out of breath and how much she is slowing down. Nothing has ever been able to slow my Mom down before - ever! Its hard to watch her be forced to admit the defeat of her body to this disease. Her poor shoulders are starting to hunch over and her muscles are getting sore and atrophying. Yesterday for the first time I saw fasciculations on her face from her temples all the way down to where her neck and sweater met.

While all of that is difficult the most grueling part of everything is that her ability to communicate through speaking is almost completely lost. Partly due to the fact that her tongue (aka: the Slug - another nickname I use endearingly) has little mobility left and partly due to the fact that talking takes more lung capacity than she has. This has been understandably hard, especially on her. We try to make the most out of it and we joke about the funny interpretations we come up with.

My Mom is teaching us to be patient, loving, kind, and compassionate. As well as giving me a perspective on life that has taught me about what really matters. Her last lesson on perspective and attitude will never be forgotten or lost.

Last night was wonderful. I was wrapping presents and she was talking to me through her i pad. We were simply hanging out. I love that we can talk about anything, nothing, and everything all at the same time. I am never more comfortable and free to be myself than when I am with her. She knows me and understands me better than anyone in this world because I am like her.

ALS may be able to control my Moms body, but it has NO control over her spirit, nor will it ever conquer that part of her.

She will always be the:

STRONG
FUN

EXUBERANT

LOVING

SILLY

&

SASSY

woman she has always been.

Being here with her and my Dad has been one of the best experiences of my life. I'm not really sure how life will be able to go on without her. I expect that is when life will feel hard, sad, and painful. For now life is sweet in its simplicity and I am immersed in love and the true meaning of Christmas.

I like living in a snow globe...especially one without snow!