I Lost My Job

I feel like I am possessed with many personalities since having this disease and yesterday I was Frustrated Rosemary.

Last night Corey brought Bevan to Muskegon to meet our family for the first time and to meet Harrison. It also happened to be Bevan’s birthday so we had a lot to celebrate. After they arrived and everyone was getting comfortable I was getting frustrated because my speech is declining and I can’t entertain like I used to. It was always my job to take charge of the room and our guests and to help make them feel comfortable. I always made sure music was playing in the background to help set the mood in the room. I loved engaging in conversations that let our guests have an opportunity to tell their story so we could learn more about them. But because I am becoming speechless and helpless I can no longer run the show and it makes me mad. My family does a beautiful job entertaining but last night I just wanted my old job back.

I wanted to be toasting with everyone and crying as I gave a sentimental speech welcoming Bevan to our home. I miss making sure the lights are turned down low and there are candles burning on the table to give a perfect glow to our dining room even if we are having pizza on paper plates. I miss making sure everyone has had enough to eat and drink and I even miss clearing the table so the beautiful gluten free birthday cupcakes Kelly ordered special for Bevan could shine bright as we sang “Happy Birthday.”

But yesterday was a weepy day for me where I started off my morning crying with my friends Patti, Colleen, Mary and Maria and I ended my night crying in our bedroom with Mark because it’s not my job any more.

Today is already a better day for me so I will concentrate on the jobs I can do and just enjoy being with my family.

God’s Gifts Are Simple

Lately I’ve experienced this amazing revelation. My whole life I’ve been praying, looking for and wanting God to talk directly to me so I could see, feel and touch him. I always thought their was something wrong with the way I was praying because some of the time during my prayers my mind would wander. I always silently criticized myself for the way I prayed because God didn’t talk with me the way I wanted him to.

The other day I finally realized that God was and has always been talking and walking with me every step of my life. God is in the simple and free things in my everyday life. God is in a smile and an open ear. He’s in the kindness we notice and the sadness we feel. God is in the love we feel and in all of the beautiful things around us.

My revelation may sound elementary to most but it feels really good to me. Even though I’ve heard God is everywhere many times I don’t think I believed it until now. I don’t think I would have seen it so clearly without my suffering.

Facing Our Fears

As my disease progresses I find it so important to keep family and friends close so they can remain comfortable seeing me. With some of my siblings, visits have been too infrequent and when we do get together it’s uncomfortable for them because I’ve changed so much.

A few weeks ago, one of these family visits included a lot of tears and superficial discussion because no one seemed to know what to say. A dinner with some of the same family members a week later was much more relaxed with candle light, great conversation and no tears.

We’ve decided to set up a weekly visit so we can all grow together with my disease.

My Circle of Love

No matter how large my circle of love gets, there’s always room for more.

Happy Birthday, Mark

Dear Mark,

Last Friday was your birthday and I felt like it was mine. You do so much for me every day but I especially love that you dry me off first after our shower and then you wrap me in your warm dry towel and use my cold wet one to dry yourself off. That is only one of the many selfless acts of love you do for me every day.

We’ve now survived two of your birthdays knowing we are living with limited time together and I think we’ve made great use of our time and haven’t wasted a single moment. Yes, we’ve been sad together and have felt helpless sometimes but the hard times make us treasure the moments that are so good.

Mark, I know you are very private and would rather blend in with the crowd rather than be on stage but I can’t help but write about you because you amaze me every day with your kindness. I know I continue to push you past your comfort zone by sharing so much of you on this blog but this practice may be helpful someday.

Recently I discovered I fell in love with you a few years before I realized it. Do you remember the summer after I graduated from high school when Jill Moore and I ran into you and Al Jensen at the Rendezvous Bar and we went to Al’s house after we closed down the bar? We were in Al’s  backyard standing next to the pool and as we were talking you gently put your arm around me and walked me into the pool with my clothes and shoes on. I thought I was going to drown because I was wearing my big clunky shoes and they felt like heavy bricks and I immediately sunk to the bottom but you helped me up to the surface to get air. I couldn’t believe you were so bold to walk me into the pool but I loved the spontaneity of your decision to do something so crazy.

One of the reasons I fell in love with you was because of your quick wit and humor. After we were married for a while and our family grew we both lost some of our fun and carefree craziness because we didn’t want to screw anything up for our family. Today even though we have serious stuff to worry about I’m so glad your humor and your quick wit are back because it feels so good to  laugh with you.

We both are learning patience, something neither of us have been very good at. We have a long way to go with this disease and life together is going to become more difficult which will require more patience but together I know we can do it.

Celebrating your 59th birthday with a healthy new grandson makes for a extra special day.

Mark, thank you for writing, “I love you like crazy.” in almost every card you’ve given to me over the years.

Happy Birthday. I love you like crazy, too.

Rosemary