Bonnie’s Story

Site created on August 2, 2019

Welcome to our CaringBridge website. This is our easiest way to let you know about our darling girl ❤️ Our sweet, sassy and oh so spunky Momma was diagnosed with ALS in April. Not an easy disease as it has no treatment and leaves you grasping at straws to keep your most precious loved one as comfortable as possible. We are working at this daily. Please keep the cards and love coming. She so loves to read your messages ❤️

Newest Update

Journal entry by Christine Johnson

I say "we" because it has taken the proverbial village to ensure our darling girl was loved and cared for right up until we said our final goodbyes.

We tried really hard to have her service on Saturday, as life reminds us, its not all about us. Someone else was saying goodbye to their loved one too.

I'm sharing my eulogy I did for my Mom for those of you who couldn't be there. I thought it was a good idea to make sure everyone heard it.

I won't be updating this Caring Bridge anymore. I don't need to. Just do us one favor, keep sharing her goodness. Keep speaking about her and if you see us, in Wegmans, or the 4th of July, come talk to us, talk about our darling girl. We actually need you all more now than ever <3

Kiss the ones you love. Every chance you get.

I could stand up here all day and talk to you about what an amazing woman our Mom is. But since you are all here, I trust you all know.  And they only gave me 3-5 minutes to speak.

I thought my time would be better spent talking about some of the things our Mom has taught each and every one of us.

Always lead with kindness. Followed closely by compassion.  No matter who you are dealing with, kindness matters. And since you really don’t know what is going on in that person’s life, compassion goes a long way.

When you ask someone how they are, listen to what they tell you.  Really listen.  And listen not with the intent to respond.  One of our Mom’s greatest gifts was her ability to listen.  Chances are if you told her your birthday or anniversary was coming up, you’d get a card or a message when it did.  She listened that well.

Don’t just live your life. Live IN your life.  We learned so much about what it means to really be present in this life. It would have been so easy to let this disease beat our Mom and us down to nothing.  Instead, we focused on all the things it gave us.   Like the un-believeable blessing of our Mom realizing just how much of an impact she made, every where she went.

Don’t wait until you find out your time is limited to make every minute count.  Our Mom never did.  She lived IN her life every day.   When you turn 55 and want to buy jet skis.  Do it. And drive 55 miles an hour across the bay like you could fly.  And then when you turn 70 and you want to buy a boat.  Do it.  And buy the biggest boat you want. Then sit back and bask in the joy it brings you and the others who ride in that boat with you.

Always remember that there is someone else somewhere who has it worse than you.  It didn’t happen often but at Mom’s lowest points, when the anger and sadness were overwhelming, I would gently remind her that somewhere there was someone with ALS in a nursing home, alone, with no one to visit them and no choices in their care.  But here she was, in her beautiful home, cared for by her family and friends and the most amazing nursing care we could find.  Surrounded by love that came in every form possible.  She would put her hand on my face and ask me how I got so smart and loving and compassionate.  It was then that I was finally able to give her “the look”, the look we all know, and get away with it.  I am my mother’s daughter I would tell her.

Always treasure the people in your life. Every single one of them. They are there for a reason.  When they come to mind, let them know.  Send the card or the text or make the call or the plans.  You never know when that one gesture is the only good thing that happened to them that day. 

Always leave people better than when you found them.  When people are at their worst, love them more. That’s when they need it the most.

Never give up.  ALS may have taken our Mom’s body, but it never took her Will. She had an incredible Will to live.  Why wouldn’t she? She lived her best life. Every single day.

Our small but mighty family thanks you, endlessly we thank you.  To our family who came from afar to spend time with her, to our amazing aides who became family and lovingly cared for her when we couldn’t be there, to our constants as we called them who never left our side and to all of you who visited and sent cards and love and prayers and continually let her know just how darling she really is.

Ralph Waldo Emerson said “The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”

You lived well darling girl and we are so grateful you were ours.

 

 

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