When things suddenly turn everything upside down.

Two years ago today my mom was diagnosed with ALS.

PJ was just two months old.  I was still on maternity leave.  It was a Wednesday.  His christening was that Sunday coming up. 

I had set up the appointment for my mom at the ALS clinic, because I'd read that you should go to an ALS specialist so that someone with experience can determine for sure whether or not you have ALS, since there is no definitive test for it.

I had set up with the expectation she was going so they could tell her she did not have ALS, something else, and she could stop worrying about it.

I'll never forget that phone call.  My phone was on the charger, sitting on the stairs.  It rang and I picked up my 2 month old son and went to the phone.

It took all my strength not to drop the phone. 

It took all my strength not to burst into tears on the phone.

Prior to this day, my mom had some issues with her hand, and a little with her foot.

After this, it seemed like the disease plugged ahead full force.

She continued to work for about a month after her diagnosis.  She tripped one day and cut her chin.  She fell another time.  On my parents wedding anniversary, June 25, she fell again and had to go to the hospital.

After this, her HR person came to the house and told her they thought it would be best if she retired.  It was too dangerous for her.  And they were right.  Her firm was incredible -- gave her 2 months of severance, full benefits, made sure she got her long-term disability coverage.

They raised $20,000 for her.

Her boss offered to pay for, and continues to pay for, her home health care aide, because my stepdad can't afford to stop working and they can't afford to pay for it themselves.

At the beginning, my mom would say she was gonna beat it.  That she was gonna get better, and be able to stay home still so she could watch PJ for me.  For free, of course.  Her eyes would dance and gleam when she said this.

Then the disease continued to progress.  Her other hand was getting stiff. Her legs.  It was difficult for her to walk.  She couldn't cut her own food.   She needed a wheelchair if she had to walk more than a couple feet.

She couldn't pick up PJ.  Or change his diaper. 

She couldn't go shopping with me anymore.

In the early days, we went over there almost every weekend.  As she got worse and worse, it became more and more difficult for me to see her.  I was losing her.  Right before my very eyes.

I never imagine my children wouldn't know my mom.  I never imagined my mom wouldn't be able to come to the hospital to meet her granddaughter.  That she wouldn't meet her till she was 3 weeks old.

I never imagined she'd miss my husband's 30th birthday party.

I never imagined she wouldn't be able to come to PJ's 2nd birthday party.

I never imagined I'd never be able to ask her to babysit, something she LONGED to do.  Something she offered to do when I was 12 weeks pregnant, saying we could go on vacation, and she'd take off work and keep PJ so we could enjoy ourselves.

This disease is the worst I've ever seen.  It robs you of your body, piece by piece.  You are trapped in a body that doesn't work.   It's been around for 70 years and there is nothing to slow it down, nothing to help it, nothing.

This day, two years ago, the question, "Hey, how's your mom doing?" took on an entirely different meaning.

To read more about my mom's condition, please click on the ALS label at the bottom of this post.