Prayer.

from Marilyn -

A very special thing happened to me today. So special, it needs to be shared.

There is a person I have known, in a friendly professional way, for a while. I have always admired them for what they do, how they do it, their kindness to me, their commitment to me, their commitment to their family. A really good person. There is a fine line between friendly professional and friend and I've never known exactly how to cross that line.

I've always heard that prayer is a powerful thing and today I believe it more than I did yesterday.

My friend said "May I make a confession to you"?  (I'll admit, my mind did a long nanosecond search for what this meant while I tried to get my neck muscles to make my head nod yes.) They said prayer was important to them, they prayed often, they liked to pray for people and to pray with people but after my ALS diagnosis, they were overwhelmed and have not been praying for me. Would it be okay if they did now.

As my children have often said, and I think they are right, I am a very spiritual person. My heart, my faith and my soul's direction have never had an organized name though. I believe - no matter who asks me. I am honored when someone offers to pray for me or tells me their children's church group has added me to their prayer list. I believe in the power of prayer and the power the universe must feel when someone offers that strength to me. 

My friend held my hand and prayed. It was a powerful and honest prayer. And a great gift.

 I am fortunate to have friends who give me so many gifts:
-flowers, and fun, and food, and time...
... and prayer.

We're still here!!

From Cat:

Man, we are WAY overdue on a blog update so for those of you still sticking with us... thanks!!

In the craziness that has been the start of summer, I neglected to post about the Raleigh ALS walk that happened way back in April! Whoops! While I have some other things on my mind right this moment, I would be remiss if I didn't record what an amazing day that was.

As best we could tell, we had close to 50 wonderful friends come out to walk with us, love us, and support us. We raised over $10,000 for ALS!!! $10,000!!! That just blows my mind.

Mom was overwhelmed by all of the love and support that was rained down on her all day.

I mean, just look at all of the love and joy in these pictures!! Who knew something as awful as ALS could still generate so much joy?

This is grace. This is comfort. This is hope.

I am grateful every day for the people in these pictures and the people who were walking with us in spirit.

ALS could have very easily ruined us by now. It is currently trying it's best to rob us of this joy and hope but, thanks to the support of amazing friends and family and a mom with a VERY healthy sense of humor, we are standing strong and saying, "Not today, ALS-hole... not today!!"

ALS-hole... now that's funny!

"Firsts and Lasts". (Not funny)

From M:

I get so excited when someone says they have read our blog or I find a new comment.  Silly excited. What we hear most is how funny it is. I love that!! I love to make people laugh. But, the purpose of this blog was to let folks know the good and the no so good. I don't want to disappoint, so future blogs will come with the "not funny" warning when appropriate so you will know it's probably not going to be a knee slapper.

I post my "I'm Grateful For"s everyday (on Facebook) and it really makes me think - every day - about doing that. Being grateful. It also reminds me that there are many things I forgot to be grateful for but... now it's too late.

I tend to remember Firsts. The first time I drove a car, the first time I heard "You have ALS", the first time I ate an oyster, the first time I shaved my legs, the first time I saw Bill, the first time I saw my babies. Lasts, are a little trickier.  Sometimes we request Lasts like, please let that be the last time you ask me to "................  Sometimes we impulsively and naively self-impose Lasts, like that is the last time I go the mall on Christmas Eve, that's the last time I cut my own hair and that's the last time I will ever ever drink tequila. These are nice Lasts -they are reversible. Then there are the for-true ones like, that's the last time I will be a teenager, the last time I talked with my mother .....and that's the last time I watch "Fried a Green Tomatoes".  The saddest Lasts are the sneaky ones. The ones you don't know are for the last time... until after. It's too late to cherish them one more time.  I seem to be finding a lot of these lately.  Mostly, they are subtle things, things I didn't even know I had until they were gone.  Things I miss doing.  I'm going to start adding "I Miss"s to my daily posts. It is not intended to invite the "oh poor baby"s but to put some closure on them for me, share some of what ALS is about and maybe give you a chance to put them on your grateful list.

Here are a few things I miss:

Kicking a ball
Opening a jar
Talking on the phone
Wearing high heels
Being alone
Blowing up balloons
Crossing my legs without using my hands
Unlocking the front door
Crying (my throat closes up)
Putting on earrings
Lifting a gallon of milk
Writing
Walking alone
Talking
Picking up my Cole and Beckett

This ALS stuff is nasty business but it has helped me focus on how much I still have.

This is for you, Marilyn!

from cat:

A few months ago my brother-in-law, Todd, sent me a text message saying that he needed to tell me something. Now, if you know the lengths he went to to propose to Phoebe, and the secrets that I had to keep for SO long, you know that I was on the edge of my seat.

I remember, I was sitting in the parking lot of the Office Max. I'm paraphrasing a bit but, here is what he said:

"Cat, this whole thing with your mom sucks. I know you're upset, Phoebe is upset, she cries sometimes and I honestly don't know what to do other than to hold her. I wish more than anything there was something I could do to make this better. I wasn't going to tell you about this until the walk in Charlotte but the guys and I were all talking and we figured we should probably bring at least one person in on this so you know what's going on. The guys and I have been trying to come up with something to do for your mom since she came out to support us at our soccer tournament in December. We've honestly been planning this since December. We just think your mom is so special, we want to show her how much we love her."

**It's me, Cat, now** I'm going to be completely honest here. At this point, I was 100% prepared for him to say that he and the guys were planning a flash dance for mom. It's just where my mind went. I imagined Todd, Lee, Tuttle, Stefano, Vance, and all of their other soccer playing buddies jumping up at a random event and busting into a very well choreographed dance. I was wrong... but I'm still holding out hope. 

Back to the story: Todd then tells me that he and his friends have planned a soccer tournament. Not just any soccer tournament but, an annual soccer tournament in mom's name. The proceeds to go to the MB23 ALS Foundation. Her foundation. All for her. 

I cried right there in the Office Max parking lot.

He brought Phoebe and I in on it after it was already done. Can I just say again that these are a bunch of guys who in all honesty have only known our mom for a few years?? Seriously?? **Heart melt**

They presented this whole thing to mom and dad after the Charlotte ALS walk. Just about everyone that had a hand in the planning of this came to Todd & Phoebe's house and we sat mom & dad down on the couch and played this...

I know I'm biased but, have you ever seen a more beautiful woman? That smile will light up my life forever. And the people in our lives who helped us make that video?? Are you kidding me? We had videos coming in even after this one had been put together. They're the best.

After we all dried our eyes, we put our ALS Soccer Shootout t-shirts that Todd's friends designed and made for us and watched the video again. Man, we've got some funny people in our lives!!

 

So, if you are free on July 16, we would love it if you'd come out to the ALS Soccer Shootout. There will be some great soccer to watch (Todd and most of his friends played in college and some played professionally), bounce houses, food trucks, and lots of other family fun. You can register your own team to play and, if you are a business and are interested in sponsoring this event, please click on the sponsor tab and let us know! If you are just a person but would still like to help, please click on the donate button at the top of the page. Every little bit helps!

We will continue to post information about this event as we get closer. Thank you in advance for your support and your love for our momma. We think she is the most wonderful person on earth and we hope you all get a chance to be touched by her amazing spirit.

To Todd and his friends who set this up - thank you for loving mom like your own. You mean the world to her and as she said the night you played this video for her, "If I could talk, I couldn't."

http://www.alssoccershootout.com

So much to do

From M:

So much good stuff is happening!  This weekend (4/9) we went to Charlotte to visit Phoebe and Todd and to participate in our first ALS walk as Team23+ (thanks to Catherine, one of Todd's soccer mom's, for signing everyone up!).  I had no idea what to expect but I truly didn't expect so many people to be there to walk behind my banner.

I was saying "hello" and "thank you so much for being here" over and over and gloriously over for an hour. They just kept coming. Phoebe and Todd have amazing friends. Some traveled from Asheville and Boone and Durham, some brought their spouses, their friends, they brought tiny babies, they brought dogs, there were a few amazing soccer players from the team Todd coaches and the team he plays with (more on these amazing men later), another precious friend brought doughnuts and huge red "2" and "3" balloons and one great friend of Phoebe's drove from outside of Asheville with her husband, 2 little kids and her brand new baby to walk with me. Amazing!  At one point during the walk, Phoebe and Catron ran me (in my temporary wheel chair, BluGo) ahead of my team and turned me around so I could see everyone.

I couldn't breathe for a second and my eyes started sweating. There were so many people!!!  A huge testament to the love Phoebe and Todd have pulled in to support us in this ALS journey.  It gives me real hope that awareness and funding for ALS are growing daily. I know my big red bubble of love and support is so much bigger than I could ever imagine. I love every single one of the people who were there on Saturday, in person and in spirit. Thank you to the moon!

The big red bubble of love.

EXCITING NEWS!!

From Cat:

This post is so overdue it’s not even funny. We have SO many things to be excited about right now but I’m just going to lead off with 2 of them! Last Tuesday I went with mom and dad to the Duke ALS Clinic for a few hours. Mom always meets with each specialist on her clinic day but she wasn’t scheduled to meet with Dr. Bedlack this time. Dad mentioned that if Dr. B had time to stick his head in that’d be great since I was there and hadn’t met him. Well, Dr. Bedlack didn’t stick his head in, he came in and sat down and talked with us. It was not at all like any sit down doctor discussion I’ve ever been a part of. I seriously thought we were just a bunch of friends sitting around having a few drinks and talking about the latest happenings in the world of ALS. He’s amazing to listen to and you can tell within minutes that he has truly dedicated his life to finding a cure for ALS.

He told us that there were 3 trials currently accepting patients and that he was really excited about all of them. Study #1 – mom didn’t qualify for due to another medication she is on. Study #2 – we really had hoped mom could get on but her respiratory levels weren’t high enough to qualify. That one was a bummer. Then he told us about this Lunasin study that just opened up; it’s actually one of his studies that has come to fruition thanks to his ALSUntangled program. If you haven’t looked into that, you should (but you’ll need to know how to work “the Twitter” to get the most information from it). He described ALSUntangled as the X Files of ALS. Again, how perfect could this guy be for my momma?!? Anywho… Lunasin is a peptide found in soy and its name was chosen from the Filipino word lunas, which means “cure”.  Ummm, yes please. 

You can read more about the study here but, basically, there are thoughts that Lunasin could slow the progression of ALS. Ummm, yes, please again!

I’m totally skipping ahead in the actual progression of the day but… later that evening, mom let us know that she qualified for the Lunasin study!! She’s in it and she’s been rocking it since last Wednesday. She has to drink 2 “milkshakes” every day but they taste pretty awful. Ok, they are gross but she is handling it like a champ and following it with chasers like she’s back in college. Go momma!! We’ll be sure to keep you posted on how it’s going.

In talking about the study, Dr. Bedlack started talking about the ALS reversals that he had discovered and we told him that mom’s “Team 23+” had turned into a full-fledged team – not just a t-shirt that she wore to her first appointment… and then he dropped the bombshell and our 2^nd thing to be excited about...

HE’S FOUND #23 AND POSSIBLY #24!!!! (As in, a 23^rd and possibly a 24^th person who have had significant improvement/reversals in their ALS symptoms!!!)

This is what Team23+ is. This is the whole reason we have the “+” at the end. Mom’s goal and desire for Team 23+ is to raise awareness and to support ALS research in the hopes of finding more cases of ALS reversals. Of course, we all want her to be one of those reversal cases and that will always be our end goal. The point right now is, let’s keep this number going up. The more reversals that are discovered, the more medical files Dr. Bedlack can study, the more opportunities to find clues for a cure.

Such a wonderful way to lead up to our first Walk to Defeat ALS which was in Charlotte this past weekend. The weekend was beyond incredible and therefore deserves its own post, or three.

Thanks for keeping up with us and sending your positive thoughts mom’s way. She is definitely feeling the love and so are we. You guys are the coolest. 

Rica/Rico

from M:

Our house is wrapped around a most gentle and peaceful little garden and in the little garden is a little "water feature" - we call it the pond.  Last summer a little frog moved in.  We have been entertained and delighted by this bullfrog beyond reason.  We named her Frederica.  She likes to sit on the ledge of the pond and do what frogs do all day. Nothing. Cole and Beckett (precious grandsons) always look for her when they visit. If she's there, they shriek "Rica's out!" We watched her grow to be a big fat beautiful bullfrog. Sometime last fall, I decided Rica was actually Rico - a male. I can't remember why I decided this. Everybody adjusted well to the news. Rico did nothing. During the winter, he hibernated in the bottom of the pond and somehow managed to survive the cold. I worried about him daily. Then one day the daffodils and Rico announced spring. There he was, a little skinnier than before, sitting in the summer doing what he does - nothing.     

Bill got a new camera for Christmas and has now photographed Rico hundreds of times. Really. I was admiring some of the pictures, went to trusted Google, and discovered - Rico really is Rica. A female. We have photographic evidence.  Again we adjusted the vowel at the end of her name.  No problem.  Rica did nothing. But two weeks ago I realized we hadn't seen her for a couple of days. By the weekend I was really worried. I missed that silly frog. (Here comes the good part.)

Then miraculously, one week later, Rica returned. Bill said she finally did something. She was conflicted, had socially inflicted gender identity issues and had gone to Virginia to pee.