Attitudes / Faith

When Mom Has ALS

On Sunday, I was blessed to have both of our daughters with us as we celebrated Mother’s Day at my Mom’s place – a lovely retirement complex – for a delicious brunch.

My girls, my Mom, and me on Mother's Day 2014

My girls, my Mom, and me on Mother’s Day 2014

Ordinarily, daughter number one would have been at work. But last week she was having terrible pain and had to go to urgent care. It was decided that she needed an appendectomy. So Alan spent many hours at the hospital with her while we scrambled to find caregivers for me.

She is recovering, but still has pain. I am her mom. I am supposed to be the one to take care of her. And I cannot.

From the moment I first saw her and held her, I knew that there was nothing in the world I wouldn’t do for her. The same goes for her sister. That “mama bear” instinct is so strong.

So, ever since ALS crept into our family, I have been incredibly frustrated. My girls are in my thoughts and prayers constantly. They help care for me now. I am only 57. It’s not supposed to be this way.

On the flipside, there is my mother. Approaching her 91st birthday and watching her baby – I am the youngest – coping with an incurable illness. I understand how she feels because I have also had to deal with a sense of helplessness where my kids are concerned. Mom took care of me when I was sick so many times. When I was 16 I missed several weeks of school due to a nasty case of the flu, which turned into pneumonia. She stayed with me the whole time until I was eventually hospitalized for a few days. I think she used up most, if not all, of her vacation days. (Thanks, Mom.)

That’s what mothers do. We take care of people. We take care of homes and schedules and children and pets, etc., etc., etc.…

Those of us who have played this role most of our lives have a hard time when forced to give it all up. Especially when this happens much sooner than expected. I am still here and completely aware… and completely unable to do anything for myself, much less for anyone else.

Last week’s medical emergency really got me thinking about this. And this week, even more so. We live in San Diego County. As I write this, at least six wildfires are burning in the county. In 2003 and in 2007, our county was besieged by wildfires. Both those times, fires were moving close to us and we were packed and ready to evacuate.

October 2007 – watching the fire approach our neighborhood

October 2007 – watching the fire approach our neighborhood

Fortunately, we didn’t have to leave either time. We live in a different area now and it is unlikely we would need to evacuate. But both of those times we were prepared to do so and I worked very hard packing and strategizing for a possible relocation, making sure all of us – including the pets – had all necessary items. This is what I do. Make lists and work the problem. Well, that is what I used to do, anyway.

Now I just sit and try not to worry. I am pretty good at sitting. But the “not worrying” part – not so much.

Now, I know worrying is useless. And I try not to overdo it. But, hey, I am a mom. It comes with the job. :-)

There are different ways of looking at this, of course. My physical limitations mean that I am “forced” to sit around and be waited on hand and foot. Friends visit me. Some bring flowers or good things to eat. Some send me cards and notes. But before you say, “Where do I sign up?”, think about this: I have to ask people to scratch my nose if it itches; I can’t use the bathroom by myself; I am unable to make a simple phone call without help. Have I mentioned lately how much I hate ALS?

As a human parent, I have limitations, even under the best of circumstances. We all do. That’s why I am so thankful that I have a Heavenly Father who can do more than I can imagine. He has a plan. I don’t know what that is or how ALS fits into that plan. But I trust Him. My prayer as a mother is that my children will also trust Him. He is bigger than any problems we face.

Romans 15, verse 13, says, “May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” This is my prayer as a mom.

Love, Patty

3 thoughts on “When Mom Has ALS

  1. Yes, we can and do trust our Heavenly Father and wonder what His plan is for us and
    I am pleased that you trust Him even as we wonder what His purpose can be.
    With the fires raging around our area and being unable to help it would be easy to
    give in to worry, but we can trust and that is such a cause for praise. Love and prayers
    for you and your family.

  2. Although my mother was not the one with ALS, she also felt the same way when it came to my brother with ALS. She is in a nursing home and can’t bathe, toilet, or dress herself. It saddened her that she was not physically able to help care for her son. The most wonderful things she could do for him was to pray for him, pray with him, visit with him and provide monetary support if there was something he needed that wasn’t covered by his insurance or Medicare. She used to cry about this all the time. Due to each of them being in a wheelchair, it was very difficult to get them close enough together to hug or kiss each other. That bothered both of them tremendously. My mom shed many a tear over that and so did Bob. So Patty, even though you can’t physically take care of them, you CAN still love them, support them, comfort them with your words, and pray for them. I know you are good at all of those. I continue to keep you and Alan in my prayers and will add your children as well. I hope your daughter continues her recovery from surgery.

    • hello patty…i am so glad you had a wonderful mother’s day…my mother passed 3 years ago february…i miss her everyday, but this past mother’s day i had real longing to be with her physically…and do you know she appeared in a dream , very up close and gave me the biggest hug….there is nothing like a mother’s love…. i am so happy you still have your mother..let her comfort you and your daughters it is there privelage to care for you. i worked in hospice for a couple of years after my degree in counseling. we mother’s have insight like no other, comfort and support are our gifts to our family.
      i am still in a quandry with diagnosis, strted a new med tht helps the pain, but legs are still weak and wabbly…i think of you often in hopes your courage sustains you and continues inspiration to all of us. much. lv.

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