You will always be with me…

Dear Family, Friends and SCUDFRIES Supporters,

I have tried over and over to write something about Dad…yet I am still stuck.

My heart is happy for his peace but I am still so sad he is gone. I am moved by all of you for reaching out to us. Thank you for comforting us and supporting us during his funeral services and this difficult time. I have so much I want to share with you about Dad and our family, but it will have to come out of my heart when I am a little stronger. Thank you for loving my dad and for all your thoughts and prayers.

Here is a poem that reflects where I am at right now and fills my heart with hope. Struggling through the cold winter and rainy days, I try to mourn his passing with grace and strength. May you too find comfort in these words.

Love,

Jen “Scudamore” Rodriguez

Your Spirit – A Tribute to My Father
by Tram-Tiara T. Von Reichenbach

I know that no matter what
You will always be with me.
When life separates us
I’ll know it is only your soul
Saying goodbye to your body
But your spirit will be with me always.
When I see a bird chirping on a nearby branch
I will know it is you singing to me.
When a butterfly brushes gently by me so care freely
I will know it is you assuring me you are free from pain.
When the gentle fragrance of a flower catches my attention
I will know it is you reminding me
To appreciate the simple things in life.
When the sun shining through my window awakens me
I will feel the warmth of your love.
When I hear the rain pitter patter against my window sill
I will hear your words of wisdom
And will remember what you taught me so well’
That without rain trees cannot grow
Without rain flowers cannot bloom
Without life’s challenges I cannot grow strong.
When I look out to the sea
I will think of your endless love for your family.
When I think of mountains, their majesty and magnificence
I will think of your courage for your country.
No matter where I am
Your spirit will be beside me
For I know that no matter what
You will always be with me.

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Gratitude

Dear Dad,

I can’t believe Thanksgiving has come and gone and now it is Dec 1st. I’m up late tonight, not able to sleep. I’m thinking of you and Mom and I am overwhelmed with such amazing memories of Thanksgiving and a warm heart because of it.
I loved seeing the pictures today of the Christmas Tree that we sent with Carlos and Margaret. Marie and I carefully handpicked those ornaments from past Christmas’s that I know we all hold dear to our hearts. We wanted you to be able to look over and see your own home ornaments and Christmas decor.

This past week has been such a crazy one. As I reflect on all the highs and lows, I can’t help but feel this intense GRATITUDE towards you. We couldn’t go to visit you at Kessler, and that was very disappointing. It didn’t stop me from remembering what Thanksgiving was all about. You weren’t feeling well, we weren’t feeling well, the weather was crazy cold and traffic to Jersey was insane!!!! Instead of being in the dumps, you post pics of how you make the best of a Holiday that most people in your situation would deem not worth celebrating. Your core positive outlook on life never seems to let me down and continues to inspire me every second of the day. You have always been that positive light in my life and nothing has changed. Well, maybe a few things. Because of how you chose to live and explore every new adventure there is to be found…Carl and I (and I’m sure many others) have been effected by your positive light. We have met some incredible people with amazingly huge hearts and even bigger intentions of generosity. Your SCUD ARMY was at it again, led this time by Anne Mader, Christina, Julie, Lynn and many others that I don’t even know about. They not only provided you with a beautiful Thanksgiving dinner spread (which I heard you ate a lot of) but they also showed up early Thanksgiving Day on my doorstep with an amazing Thanksgiving dinner, drinks and desserts! These are all people that Carl and I grateful for because of you. Thank you SCUD’S ARMY! God Bless!

Without you in my life I would be heart broken. I’m so blessed to still have you in my life. You still teach me so much. Even in your toughest hours, you are changing my life. I feel like in the last three months I have learned so much, felt so much and grown so much. My dearest friends have come forward to help us here, your friends are hard working behind the scenes to prepare the perfect house upon your return. I feel a sense of rebirth with some of our family relationships and I am so grateful for that. You are a loved man and I am proud that you are my father.

I have Gratitude for many things. You are one of them!!! Keep fighting to move those thumbs. Keep trying to find the right wheelchair. Keep eating those meals with (5) YES!!! I said FIVE swallows. Don’t forget to be easy on mom when she follows the rules. Your the rebel in the family~She’s the Saint. Remember that. Keep your winning attitude no matter how many steps forward or back that you take. Trust your Doctors, Trust your wife, Trust God.

I love you Dad with all of my heart. Thank you for being you and moving forward no matter how difficult it may be.
The kids and Carl and I miss you very much and soon the day will come where none of us will have the sniffles, Strep throat, watery eyes,mono,the flu or hives. I promise.

Love you, Hugs and kisses!!!!
Jen

Scud Visit Report: From Lynn Grasso

I was in NJ for a family event and was able to visit Scud the next day, this past Friday, at Kessler West, his new rehab center. It was an amazing day! As Scud said, his “best day yet.” He was able to sleep really well the night before for the first time since being transferred, and so was full of Scud energy—watch out! I got there after his 2-hour physical therapy session, where, as he told me, they put him on the “Frankenstein Table”. This is a table he is strapped to so that he can be fully vertical, stretched out, allowing his body to be in a more natural position, and to strengthen his tolerance. As they told us, they were amazed that he could tolerate such a long time in this position—that no one can on the first day! Of course, I was not surprised!

We chatted for a bit, with Margaret and Scud’s sister Lori, from Niagara Falls. Lori and I got the downlow from the director of therapy, who told us that he’d already heard about and read Scud’s case (of course!), and will be alerting his staff about Scud’s eagerness to get things rolling.

Scud’s treatment plan will be: first, to get as much of his voice back as possible. He will then get a custom power wheelchair which, through voice activation hopefully, he will be able to move himself around, weightshift/recline (which he has to do every 20 minutes to keep his skin integrity), and –the BIG GOAL—go OUTSIDE! Before the power chair can happen, they will work to advance him from his large and cumbersome ventilator system (requires a wall plug), to a more mobile unit that can go in a large backpack on the back of his chair. Then, he’s FREE! Watch out! Another goal is for voice activation to use the Ipad (his personal goal), and to navigate Facebook. He told his therapist, “I’m a Facebook junkie!”

When his trach is adjusted a certain way, he is able to talk! When I heard his voice for the first time, I got weepy! Which was not the first time all day…..both for his talking, and for me getting weepy ☺

His speech therapy session was great. She had him practicing swallowing exercises and voice practice. The swallowing practice is hugely important, since another big goal is to be eating food—as early as next week!

Then we broke out his beloved IPad, and set up a few Pandora stations (Elton John, Billy Joel, Train, Cold Play). Hopefully someday soon, he will be accessing the IPad by himself.

The final, and most wonderful session, was occupational therapy, because I got to see the HUGE gym. Right where he belongs! The rehab center has an adorable yellow lab who hangs out in the therapy gym, and gets brushed and coddled by the many patients. His occupational therapist talked a lot with Scud about his goals, and how the progression must be slow at first to ensure safety with his breathing, heart function, and ability to tolerate being upright without getting orthostatic. Another OT came over to discuss his requests for a more accessible switch unit he can push with his head to call the nurse (Scud currently has ½” range of motion in his neck/head). His OT suggested that he also have a goal of updating his Scudfries.org site BY HIMSELF. He LOVED that idea, and his face lit up, Scud-style.

Also during his OT session, I met his physical therapist, the one who put him on the Frankenstein Table. She has been there for 26 years, is a marathon runner, and used to be the manager of all the therapists at Kessler. She’s super funny, and talked with us for a long time. While we were all talking, Scud said, “If I have any capability to move something, or do something, I’M GONNA DO IT!” He said that a couple times. Shortly after that, Scud introduced me to a young therapist, who he said just started mountain biking. He asked her what kind of bike she had. She said, “A Jensen (she meant Jamis),” to which he replied, “Well, that’s ok”. He told her he has a carbon Niner ☺

The most moving and inspirational moment came during the end of the session, when we were telling them about the army of people down here, and that there has been a lot of fundraising for Scud and his family. He explained that scudfries.org is now a foundation. Scud said, “We’re not sure what the money will be used for yet (for his recovery), but if there is any left over, I’m going to use it to help other people.” Both the OT’s and my eyes filled with tears, as you can imagine…

It was VERY hard to say goodbye to him, after such a full day. It was also hard to say goodbye to Margaret, the strongest woman I know. Margaret is strong, strong, strong. She reads and/or shows him all of the videos that are sent to his phone. She is staying 3 miles away and stays with Scud all day.

I strongly suggest you visit Scud! If you have any worries or stresses, or are frustrated with your training, or your performance in a race, spend a few hours with Scud, and your life will be put back into perspective. Your priorities will be reset. I know this man whom we all adore will be continuing to surprise us, beyond our greatest expectations, with all that he is able to accomplish,

just as he always has.

Lynn Grasso

Scudfries 2.0: Updated & Ready For The Long Haul

As you can see, we have been busy around here at scudfries.org. Mutual Scud pal and long-time personal friend Martin helped to give us a new look, and we are hard at work overhauling the site to make sure that it can continue to serve as the portal for all things related to Scud’s recovery. One new feature here is a chance to share your favorite Scud story. Also, don’t forget about our awesome Flickr pool. And, as many of you have already been doing, please make use of our comments system. Scud has always been a community builder; let’s show him how great he was at it! Screen Shot 2013-10-17 at 1.12.26 PM

I just finished a massive update to our amazing donors list, which can now be found under the “Team” link in our redesign. As I have been saying since day one, this community is AMAZING! This list is incredible, and Scud and family have taken notice! They are comforted not just by the financial impact of what we are doing here but also by the way the community has come together to rally behind them.

Thanks to your generous contributions, we have raised about $65k for “Uncle” Scud and family. You all should be incredibly proud of what we have done here. That said, I want to take a moment and hammer home that this effort really is a long-term deal. I’ve joked a few times that this is going to be a whole lot more SM100 than W@W. Well, Scud and his family are in this for the long haul, facing a long and challenging recovery, and the Scud army (as we’re being called) is going to be a huge part of this effort. Our ongoing support is going to make a real difference.

So, does this mean we’re going to keep hitting you up to donate as you can and spread the word? You bet! But beyond that, there are going to be opportunities for all of us to step up, volunteer our time, or just otherwise show our support. This website will be your one-stop shop for finding ways to help our pal Scud. So to all my fellow members of Scud’s army, I say, stay tuned for your future assignments! We have work to do and a long march ahead of us. (But you can bet there’ll be Scudfries waiting at the end!)