Cole’s Kindness

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Last month while our grandsons were visiting we tried to get them involved in my care by letting them help me and they both tried their best to help in certain ways.

Cole, for instance, helped by feeding me apples and giving me my medicine.

Since I was confined to my chair, he tried to involve me in his card game by putting the game board on my lap and teaching me the rules. Even though the game board was too big and I didn’t understand how to play, he sat there and played with me anyway. After a while Peyton came along and played my cards for me.

Later I asked Cole if he would help me learn a speech app on the iPad. First he tried to tweak the voices to get one that matched mine but you had to pay extra so he decided not to do it. To help me use the app he would put my hand on the iPad but my hands didn’t work right so he tried to problem-solve by putting a blanket under my elbows. I still couldn’t keep my hands on the keyboard so we both just laughed. Sometimes he didn’t understand what I was saying and he would say, “I’m sorry, Grandma. I don’t understand. Could you please repeat?” And then we would laugh some more.

I should mention that Peyton was awesome too, he just had other things going on.

My goal for their visit was for those boys to grow with my illness and they seemed to adapt perfectly, just like they always do.

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The Storm Is Passing

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It’s been one week since I had surgery to place a feeding tube into my stomach. I thought it was going to be an easy surgery but it has kicked my butt. The doctor and my friend Rose said the procedure was flawless but shortly after surgery when I got home I was experiencing a lot of pain. I don’t know if it was due to the muscle spasms that are a symptom of ALS or not but I was having severe pain at the site of the tube. It felt like contractions.

We called Rose to see if this pain was normal. She offered to come over and check me out. By the time she got to our house she had already talked to Doctor Fox and he suggested I head back to the emergency room for a CT scan to make sure there were no internal problems. Rose stayed with us until we got the CT results. The scan showed no internal issues and I returned home. The spasms started to decrease, maybe due to the morphine that I was given in the emergency room. It was welcome relief.

After a week of sleeping on the couch and Mark sleeping in a lazy boy nearby, I feel like I am almost pain free. Now I am hoping that I can regain some of the strength that I seem to have lost since the surgery. It feels good to laugh again without the sharp pain in my belly.

As far as the feedings go it’s really easy for all of us. Instead of taking an hour to feed me, a meal in my feeding only takes 10 to 15 minutes and saves me the exhaustion of having to chew and the struggle to swallow. All of my medications can go in at the same time. I have managed to eat peaches, cheese cake, soup and popcorn the old way just so that I could taste them.

As we continue on this ALS journey the feeding tube will help to ensure that I get enough nourishment in a more efficient way.

Don’t Feel Sorry For Me

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Don’t feel sorry for me.

Don’t feel sorry for me because I have been given so many amazing gifts. I grew up in a home with loving parents and siblings and I met a wonderful man and we had four precious kids who gave us three beautiful grandsons. Throughout my life people have treated me so well and every day I experience amazing things. I see kindness in the form of a beautiful card, a smiling visitor or caring hands that help me function. I’ve enjoyed more amazing candlelit dinners in the past year than I’ve had in my whole life.

I think I will be able live the rest of my life with the happiness that has filled my heart up to this point. Everything else feels like a bonus.

So please don’t feel sorry for me. I have it all.

New Life Resolutions

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Trenell Darby first came into my life through the Salisz family. Mark Salisz and Tre became best friends while attending college in Milwaukee and the first time Tre came home with Mark the Salisz family fell in love and immediately adopted him as their own.

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Tre sent me this beautiful e-mail last New Year’s Eve and has given me permission to share.

Dearest Rosemary,

I can’t help but to sit and reflect on how the year 2013 was brought in a year ago and how much has changed since then. I so wish every year could be brought in the way we did it then. Last year, during our awesome conversation we had with everyone at the Salisz’s cabin on New Year’s Day, we both candidly shared our New Year’s resolutions that I know we both continually think about to this day. Mine being to be not so judgmental and yours being to not try to change people. Although, I’m sure neither of us have perfected these resolutions, what I know to be true is that working on them is a much better place to be than not and I know I’m all for the better and in a much happier place because of it. These are probably not New Year’s resolution but new life resolutions.

I feel compelled to share this year’s new life resolution with you because I believe you have so closely embodied it since your diagnosis.

New life resolution: To allow myself to be vulnerable, to be my authentic self and to be willing to show up and let myself be seen.

At Eric’s wedding this year, I briefly shared with you that I was reading a book by Dr. Brene Brown entitled “Daring Greatly”. In her book, she discusses how our vulnerability is our pathway to our courage, and that without vulnerability you cannot exhibit courage. Many people view vulnerability as weakness and actively try to hide or run from it in effort to avoid being seen as weak. However, what is true is that when people show up and be seen through their vulnerability, people view that as courage. Dr. Brown states that vulnerability is not weakness, but actually our most accurate way to measure courage and that the level to which we protect ourselves from being vulnerable is a measure of our fear and disconnection.

I know every reader of your blog is in awe of your vulnerability and courageousness. You are courageous because of your vulnerability not in spite of it. Courage is my value and although vulnerability is not always comfortable and easy-going, I know that I will have been aligned with my values by showing up and letting myself be seen as opposed to rejecting it. Even if defeated, I can still hold my head up high knowing that I let myself be seen and dared greatly.

President Theodore Roosevelt inspires the book’s title from one of his speeches where he states:

“It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.”

I will end with another quote from Dr. Brene Brown:

“When we spend our lives waiting until we’re perfect or bulletproof before we walk into the arena, we ultimately sacrifice relationships and opportunities that may not be recoverable, we squander our precious time, and we turn our backs on our gifts, those unique contributions that only we can make. Perfect and bulletproof are seductive, but they don’t exist in the human experience. We must walk into the arena, whatever it may be — a new relationship, an important meeting, our creative process, or a difficult family conversation — with courage and the willingness to engage. Rather than sitting on the sidelines and hurling judgment and advice, we must dare to show up and let ourselves be seen. This is vulnerability. This is daring greatly.”

Thank you Rosemary for being such a great example of daring greatly through both your blog and your life. I hope you have the best New Year ever!

I love you,

Tre
Trenell R. Darby, BSN, RN, CMSRN

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Believe In Yourself

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“Stay focused. Stay committed. Keep going when things get challenging or difficult. The rewards of going past the point you think you can in your endeavors outweigh the feelings of regret you will develop from giving up too soon. Believe in yourself and believe in your dreams. I believe in you.”

Author Unknown