A Poem on ALS

I got the sweetest email the other day from a new friend named Hollie. Her husband Adam has ALS and they shared a poem that Adam wrote with me. I loved it and they gave me permission to share it here with you too!
Legs

By: Adam Caldwell

My legs don't listen to me any more
My hands forgot what my fingers are for.

My lungs can't seem to hold any air
None of this seems very fair.

My necks not up to the task at hand
My head feels like 50 pounds of sand.

My muscles are all shrunk and dwindled
I feel like I've been robbed and swindled.

My voice has almost joined the void
Good thing I have two thumbs and an android!

Love is something that will never strain
It eases the hurt and the anger and pain.

Spirit is one thing they can't take away
And I've got plenty some people would say.

I remember as bad as it gets you see
That there's always someone worse than me.

So ill finish my life just like I started
And cherish every moment until we're parted.

ALS Walk 2012

My Dad, Uncle, and Aunt all walked in the Walk to Defeat ALS this year. My Mom was one of the Faces of ALS along the path. So beautiful!

Walk to Defeat ALS 2012

Dear Friends and Family,

 

Linda and I are together at Lake Cavanaugh looking back to last year at this time as we organized our teams to support the cause of defeating ALS in memory of Caroline and all others who have lost their lives to this disease as well as those recently diagnosed.  Simply put, we will never forget your generosity and feel immense gratitude for your support.  Several of you have asked about plans for this year’s walk.

Although we are not organizing formal teams this year, we will be walking at our respective events and would love to have you join us! Here are the particulars:

Bellingham Walk:  September 29 in Bellingham Washington

http://webwa.alsa.org/site/TR/Walks/Evergreen?fr_id=8164&pg=entry

Orange County Walk:  October 20 in Irvine California

http://weboc.alsa.org/site/TR/Walks/OrangeCounty?fr_id=8220&pg=entry

This year, Linda and Denny will be walking with Kay and Ned Kennedy in support of Bob Duffy and in memory of Caroline Rober and Neil Kennedy (Ned’s brother) who both lost their fight to this devastating disease.

Larry and Pam (Caroline’s sister) will be walking on October 20 in Irvine CA in Caroline’s memory.

The need to find a cure remains as critical as ever.  Please join us to walk if you can, donate if you would, and keep your hearts and prayers with all of those battling this devastating disease.  You can register to walk or donate at the web sites shown above.

Thanks again for your overwhelming support last year.  We will always be grateful.

Larry Rober and Linda Howson

Didn't We Almost Have It All...

I haven't been able to actually sit and write these words out until now. I know its probably so lame but I was devastated when Whitney Houston died! So much so, I just pretended it wasn't real. I grew up on Whitney. My Mom loved her long before the Bodyguard days. My Mom would blast Whitney when she was cleaning, in the car, and on road trips.

I remember doing a lip sync in 4th grade for the Olinda talent show to "The Greatest Love of All" with my friend Marzette Greytack. I remember us practicing on the side of our house in our cool baggy sweatshirts and stretchy pants that were our costumes.

I have another great memory from my Freshman year of High School. I was driving home with my Mom from the Stake Seminary Scripture chase and I had won! I beat everyone out, including my older brother Brian who was in the finals with me. I wasn't exactly the coolest kid so this was a pretty big deal for me. As we were driving home in our big Van it was just me and my Mom. She got all teary and said she wanted to play me a song. Whitney sang me, "One Moment in Time." Its a funny memory but it is so distinct. In that moment I felt so great because my Mom was so proud of me.

After My Mom died I listened to Whitney - A LOT. It made me feel close to my Mom and her music brought me so much comfort. Somehow losing Whitney so soon after my Mom makes it hurt all over again.

I don't like singing solo.

All wrapped up!

Its snowing but I am all cozy in my new warm quilt. The first quilt Ive made and actually had quilted.

My friend Leslie helped me start a quilt top from my Moms t-shirts. I finally finished putting it together and with my friend Andee's advice and encouragement I got the backing done too. Andee's Mom is a great quilter and she fixed a few places where it needed it, added the batting, and took my quilt to her quilter to have done and it looks amazing! She also fixed the back because I didn't have quite enough on it and then trimmed it all up for me. Seriously the support and kindness people have showed to help me get this done is so touching.

Each of the quilt blocks are done differently.

Around each of the blocks is a darling leaf pattern.

This is what the back looks like.

Andee's Mom is going to bind it for me too because she is the BEST!

Now I can get a hug from my Mom anytime I want. It means so much to me!

Cemetery Video

My Dad took this video at the cemetery this morning. The music is Going Home by Kim Reed.

What I learned about being a Mom... because I lost mine.

I wrote this post for my blog Over the Big Moon and wanted to share it here.

Exactly one year ago today, I held my Moms hand while she took her last breath and I felt her heart beat for the last time.

A short 6 months earlier my Mom had slurred her speech for the first time, igniting a month of intense doctor visits that ruled everything out but ALS- Amyotrophic lateral sclerosis - Lou Gehrig's disease. A terminal degenerative disease that comes with a life expectancy of approximately 2-5 years. Not for my Mom, she lived 4 1/2 short months from the time she was diagnosed.

We knew her condition seemed to be deteriorating faster than most cases of ALS. With my husband's blessing, I packed myself, Davis, and Beckham up, and when we went down to my parents home for Thanksgiving we didn't come back. We planned on staying for the entire month of December. If there was even a chance this was going to be my Moms last Christmas, I wanted to be there for every moment and every tradition. By the time Christmas rolled around my Dad and I were full time caregivers and she asked me not to go home.

My husband and friends were amazing and I was able to care for her until she peacefully slipped from this world into the next. It was the most difficult and the most amazing experience all at the same time. Here is what I learned about Motherhood while losing my own Mom.

A mothers love is irreplaceable. I know this is something we all "know" in our minds but I am telling you there is nothing in this world that provides the same security and comfort as the love of a Mother or the Mother figure in our life. They are like an emotional security blanket that keeps us safe and secure in our darkest days.

I was 32 when my Mom passed away. I had a loving husband and 3 wonderful sons, and yet I felt as if the world had collapsed around me. I lost my foundation and felt so vulnerable. We as Mothers have a power that can not be replicated or replaced anywhere! It was empowering for me, as a mother, to realize the impact my love and presence has on my childrens lives.

I learned you can make a lot of mistakes as a Mother and still be a great Mom. My Mom made mistakes - as many as I make each day. It does not mean that my children will be less than they could be otherwise. In fact, my mistakes are as good of a learning experience for my boys as my perfect mommy moments are. I have wasted so much of my energy as a Mom getting down on myself for my imperfections and when I lose my patience. The only thing that matters in the end is the love you have showed your children. That is what your children will remember.

I also learned how important it is to be kind to everyone. The kind smiles and benefit of the doubt when my Mom was disabled absolutely made our day! The hardest part of ALS is that you look and sound like you are handicapped, but your mind is as sharp as it ever was. You are the same person trapped in a body that is slowly becoming more paralyzed and useless. A few people treated her like she was not as smart as she use to be. It was humiliating and frustrating for her. We never know what is in a persons mind and heart. Kindness is always the right reaction.

I learned that people for the most part are kind, well-intentioned, and doing the best they can. There is so much good in the people around us! We are all so busy with the little things that occupy our time, that for the most part usually don't matter that much. When you have a life changing experience like this, for a small moment you are blessed with the clarity of what truly matters most.

Most of all I learned how rewarding it is to be a Mom and how blessed I am to have my sons. My Mom got so much joy and pride in who I had become. It was an honor to care for her in many of the same ways she had cared for me as a baby and child. What a blessing to give her that same unconditional love. It changed my life.

Pam had talked to me about starting a blog before all of this happened and I had brushed the idea off. But losing my Mom lit a fire in me to create this little space to honor her. In many ways this blog is my little tribute to her dedication and creativity. She was amazing and innovative. I love sharing the tips and tricks she taught me, as well as the passion she had for creating a "home." She was one of the most dedicated Mothers ever! She always placed her family as her first priority. I am so blessed that I was her daughter.


I have fought back the waves of sadness that rolled in this week. It has been a year - a whole year- I have been forced to live without her. I miss her comments on my blog, I miss calling her when I have a bad day, I miss calling her when I have a great day, and I calling her to come save the day! She understood me in a way that no else does. I miss having someone who knows me so completely and still loved me so unconditionally.

And then today I was flooded with a sense of peace when I realized that the only thing that separates me from my Mom now is time. Each year that passes brings me one year closer to seeing her again. So today I don't mourn that she has been gone for a year, today I am going to celebrate being one year closer to being reunited with her.

My boys saying "goodnight" to Grandma.

Love you Mommers.You are the best guardian angel a girl could ask for!

Gone home.... from The Robers on Vimeo.

Memory Medallion

My Mom would be so happy. We got this letter from the people at Memory Medallion...

Dear Brian,

I hope you had a lovely holiday season!

I am writing today with a request. I'd like to ask if your family might give permission to Memory Medallion to share your mother's Medallion story at the upcoming RootsTech conference in Salt Lake City. We have been asked by Gordon Clarke from FamilySearch to present at the conference and we are also exhibiting. Gordon requested that we provide some demonstration links to true Medallions that might show others ideas and inspiration for their own relatives and ancestors. Your mother's Medallion is so beautiful and was one of our first in the new system, in addition to the fact that we met her at a genealogy conference, so I couldn't help

but think that hers would be meaningful to share.

Here is Brians response:

Our family would be honored if you used our memory medallion story at the RootsTech conference. For such a small device, it has really been a fun connection for our family. It meant so much to her, I even displayed the device in her eulogy; the medallion just represented so well her passion for technology and genealogy. The Family History center in Orange California dedicated an internet learning center to her honor this last year as well. Another testament that my mom was always teaching and sharing with others around her.

I have attached 3 photos of the medallion on the actual headstone which is now in place. I’m not sure you ever saw any of these. It all came out so nice. Good luck with your conference, please let me know if you need any additional information.

From our family to your company, have a wonderful 2012. Thank you for thinking about us. May your line of work forever move forward bringing families and generations together through technology.