Where I have been...

I posted this on my Mom's ALS blog today:

I wanted to let you all know that I have stolen my Mom this week so that we could enjoy setting up the Christmas decorations together. It has been a priceless week for me to spend time reminiscing and learning from her.

Her strength continues to slide. We have had a few sad milestones this week. The first is that she no longer has the strength to push herself up onto a stool or get up from the ground unassisted. This has been hard in light of the fact we are decorating but she adapts with a good attitude. She does an amazing knee walk on the ground to the nearest chair or furniture available.

The second milestone is a little harder and was learned a little harder too. She can no longer drive and go out without assistance. Unfortunately this lesson was learned after taking a fall in a parking lot yesterday evening. Her left arm has no mobility left so she could not break her fall at all. Not to mention since she can no longer get herself up she was quite literally stuck on the ground with no cell phone and no one around to help her.

She can no longer lift her left arm and uses a swinging motion to get it where she wants it. Eating has also become much more difficult and we are hoping that her feeding tube will be put in a week from tomorrow.

That all comes out sounding so bleak and yet for us its normal day to day life. She goes about it all with a smile on her face and joking about the changes that have come. Last night we got laughing so hard all over something so silly and we couldn't stop laughing.

That's one of the hardest things about ALS - while her speech slows and her limbs lose strength her mind is the same and sometimes its hard for us to remember that. My mom is not an old lady, nor is she mentally handicapped. She is as smart and sharp as ever, if not more so from the unique perspective that she has. She is amazing and being here with her this week has been a joy and blessing for me.

Sometimes people tell me they don't know how to act and I think the most important thing is to remember to let her do for herself what she can and not talk down to her. Slow down, go her pace, and just take the time to enjoy the process and not worry about being productive. That's what it is about, the joy of the process - not always the ending result.

“Anyone who imagines that bliss is normal is going to waste a lot of time running around shouting that he has been robbed. The fact is that most putts don’t drop, most beef is tough, most children grow up to be just like people, most successful marriages require a high degree of mutual toleration, and most jobs are more often dull than otherwise. Life is just like an old time rail journey … delays, sidetracks, smoke, dust, cinders, and jolts, interspersed only occasionally by beautiful vistas and thrilling bursts of speed. The trick is to thank the Lord for letting you have the ride.”

-President Gordon B. Hinckely