Sunday Scribbling - "Fearless"

I agonized over this prompt because some of the bravest people I know have fears. I also have seen fear rear its ugly head in anger causing pain and self destruction. Fear of differences, loss and our own mortality can make people act out or hide from the world. Just look at politics and you will find the bottom line of many choices are made out of fear. Being fearless can be looked at in two ways according to my dictionary, literally living without fear or calmly resolute in facing fear. I don't believe humans can live without fear so I'll write about what I have learned about fear on my own journey.

When I was a single, working mom I was given the "put your affairs in order" speech. As a parent how can leaving a 7 and 5 year old behind not scare the hell out of you? I was the stable parent and had a job that sustained us, I could not leave them! I went into survivor mode and had no time for self pity or anger. I became a stay at home mom that focused on preparing the girls to be independent. Growing up with the fear of me leaving them affected who they are today. Each person has a choice in how they handle fear and I can't expect my girl's to deal with fear in the same ways I do. Once they were out of the house I had time to face my fears of the disease.

I'm certainly not afraid to die but I'm terrified of suffocation, which is how this disease ends. Morphine will apparently help with that, but instead of dwelling on it I asked a dying ALS patient. He had his wife call me one week before his death just to tell me that dying of suffocation was not as bad as we had imagined in our support group. What a gift this man gave me in such precious moments. I think facing my greatest fear head on empowered me to face the smaller fears.

My latest fear in my "happily ever after life" is that my husband will stop thinking of me as a woman when I get to the intimate needs of living with ALS. I'm doing good on my own right now but I'm researching in-home care and respite care before I need it. You can give your spouse a vacation by checking into a hospice for a short stay and he can be worry free. I will only chose a ventilator if my loved ones are not overwhelmed and we can afford it. This was a fear that needed to be discussed at length in our marriage for me to move on.

Fear can be toxic to my well being and those I love so I must keep it in check with positive action. Brave? No, I'm just happy that I'm still alive and enjoy living.

Thursday Love - Shutter Sisters

Brotherly Love

My grandson Ethan is six and in big boy school much to the chagrin of his three year old brother Dimitri. When Ethan gets home he looks forward to being an attentive big brother and hanging with his bro's. He loves holding his baby brother Warrick and hanging out with Dima. I thought his body language in these shots were oozing with Thursday love!

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Pictures by mom, Jolene, toyed with by grandma Tammy. ;)

3WW - Nonet

Funny - Remember - Theatre

In music, a nonet is a composition which requires nine musicians for a performance.

In poetry, a nonet is a nine line poem, with the first line containing nine syllables, the next eight, so on until the last line has one syllable. Nonets can be written about any subject, and rhyming is optional.

Music speaks to the heart in rhythms

of swaying grass and bouncing balls

a theatre of sounds play

a funny little tune

or a symphony

to remember

just listen

to your

heart

I watch many movies but this little "sleeper" touched my heart and made me weep with joy. I hear music everyday after seeing this movie. ;)

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Spring Projects Have Begun!

We will have two major projects done by summer. My 15' round 48" deep above ground pool is here and will be installed inside our garage by Dave. With help from the water heater out there and a thermal blanket, I'll be doing my pool workouts very soon.

This is our side yard, taken high up, from the dining room deck. It is sloped and leads to the basement and orchard. We are adding a water feature (thanks IRS) from the right side, down through the trees, to the bench. We have already used azaleas on both sides of the path to give that area color (must click to really see). We will surround our pond with more color and water grasses after it's in.


This is my baby brother Pat, guess what he does for a living? Water features! This is a sample of his artistic work. He is an artist with pencil and charcoal also but you can see his talent in his water features. We will be doing a similar looking one for us and Dave is thrilled. The labor is food and beer. ;) I'll try and get a few shots as they create this because it's a lot more complicated than you would think. Did you know rocks are 12 cents/lb. :0

I can see the poetry forming in my head already. I'm VERY grateful for my brother and this amazing addition to our mountain abode. Dave's already wanting fish but mosquito fish are first on my list.

Sunday Scribbling - "Picture"

When I look at this happy little girl with bruised shins from running and playing, I smile. I want to hold her tightly and tell her I love her. I would assure her that I will be there to pick her up when she falls and although I may let her stumble, she will grow into a happy, loved woman.

Knowing there was a deadly gene inside this precious little body waiting to be triggered made me pause. I can't go back in time and make different choices but I can look at the journey and embrace it. I see now that all the hard times I went through, before the ALS was triggered, was my training ground for what was to come. My mom's early death, a toxic divorce and being a single working mom, toughened me up. There is a component that also made my journey easier and that is what I see in this picture. A positive, funny and happy spirit that God gave me, as my shield, when I was born.

I've been given time to adjust to my progressions and I don't take that lightly. Many have no time to adjust to this life. It may take me four times to get into bed, I may only get half my food actually in my mouth and I may need a walker for balance but I'm able to do it. Many cannot do much on their own and they have to deal with that in months, not years. They are the true warriors! I have had time to adjust, grieve, find solutions and stay positive. My disease is just another bump in the road because with the gift of time it has given me more than it has taken away.

I do need to tell this little girl to not always be so strong, that vulnerable is a good thing. People closest to me, even Dave, forget I have a disease and get annoyed at my needing help at inconvenient times (even the best of people have their moments and Dave is the BEST!). Others are eager to help but tug on my fragile arms before I'm ready or slam my head into things while lifting me. I'm always a good sport because they want to help and I've learned how to receive. lol Then there is my oldest daughter who has pushed me away because she feels unappreciated and tossed aside after my 4yr marriage and 2hr move. There is no pass on feeling like you are a bad parent or a bad wife when you are disabled. I do the best I can but I'm definitely not perfect.

This little girl all in all is going to get her fairytale life and be happy until the very end. I had to add this picture of me with my first walker. A full circle moment! Hehehe, I crack myself up!



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Thursday Love - "Mom"

This is Ruth, Dave's mom, who just turned 84 on Monday. She has two sons, shown here, four daughters with a multitude of grandchildren and great grandchildren. She has lived in a rural home, by herself, after losing her husband seven years ago. She is smart, independent, social, caring and a tough cookie. She remembers all birthdays and anniversaries never forgetting anyone at Christmas, even spouses. She gardens, loves watching sports and CNN, her garden club and not having to cook for a big family anymore. Dave and I took her to Kauai a few years ago and she took the helicopter tour. Very cool lady!

Ruth never gets sick but this Easter the flu attacked Ruth. She has smoked for most of her life so her already weakened lungs made her weaker. She never called anyone or answered her phone because she was sick and had assumed it would soon pass. She had no neighbors to check on her and one daughter living an hour away but she was out of town. The grandchildren checked on her and she ended up in the hospital with pneumonia for her 84th birthday. She had to block calls so she could recover as the nurses station became an answering service. Most of her family live in different states and were concerned. True to her nature she is already home and doing well. I admire, love and respect this fellow warrior.

The love in this woman's eyes at having her boy's in her arms this Christmas was priceless.

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3WW - "The Mist"

The Mist

Floating through the trees

a mysterious mist filled the air

breathing a heavy sigh

clinging in silence.

I stand there alone listening,

letting it stroke my face.

Feeling the calm of a

parallel universe.

Through veiled eyes I see

only beauty and peace

but I must bounce

back to reality.

I wrote this with a migraine but I really loved my first mountain mist. My husband happened to have rented "The Mist" by Stephen King that day. ;)

My thought's and prayer's go to Bone our moderator. Thank you Pia for stepping up!

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