All in the name of Accessibility

September 2009 was a rough month. Fast forward a year to September 2010 and I spent a good chunk of the month in an irritable mood.

If I were to be compared to an animal, I would have been Mango. Imagine a large fluffy orange cat. Now imagine that cat crouched on the doorstep with its fur wet from the rain, its ears laid back and body tense, a ticked off expression on its face, and all the while you hear that angry cat growl.

I don't think I portrayed that image to everyone I came in contact with, but that is how I felt inside. It was a result of my anticipation of some upcoming home improvement projects.

It is a cycle that I have come to recognize. As more of my physical abilities are lost, adaptations need to be made. And I get angry about the changes. It would have been nice if the diagnosis could have been given and I could have gotten out all of my grieving in the early stages and then moved on anticipating and making needed changes as I go...anger free. But like I said, it is a cycle I recognize, and it is how I mourn. I mourn incrementally as needed, and then move on.

This time the adaptations were big; Improving and increasing accessibility. We added a handrail down the steps into our backyard and remodeled our bathroom. The counter has been lowered, the shower is now a walk-in and a wall was partially removed and the doorway widened to be (someday when needed) wheelchair accessible. Everything was wrapped up in October.

With the big changes came a lot of sadness and it seemed to drag on much longer than normal. One morning, after Erik and Claire left for school and Jeff had gone to work, all I wanted to do was stare at the old nail hole in the wall. Do you know what I mean, where you want everything and everyone to just go away. Even if it is only for a couple of hours.

All of a sudden my wake-up call came. It was like there was a voice in my head saying, "Janae, this has gone on long enough. Get over yourself!" (There wasn't really a voice in my head...because that would present a another set of problems!) I had passed the point of grief to where it became unproductive self pity. Feeling sorry for myself consumes a surprisingly large amount of energy. So the wake-up call was a welcomed kick to get my a*s moving.

I got up and walked down the hall and just started laughing at Megan. She was dancing in the middle of our family room rug, wearing a bunch of medals around her neck and singing into a crayon. Her song went something like, "I'm a rock star, every day...God gave us fam-ilies...O' yah, I'm a really good singer!"

Thank heavens for my young children, they keep me sane.

October has had some blah, but it has been mostly good.

Enough of me. Now back to my kids...

ALS update

It looks like I'm doing some sort of pose from the movie "Titanic." Haha. At the time I was trying to walk into some crazy wind on top of the Wellsvilles. The photo dating back to 1995 was from another lifetime.

Background: The first ALS symptom was 3 1/2 years ago. Diagnosis was 2 years 3 months ago.

I think we will start at the top and work down.

Speech is continuing to slow down. Not a lot of power in projecting my voice.

My hair gives a thank you to my sister-in-laws, Sandi and Erin. This summer they gave Jeff lessons in how to put my hair in a ponytail. He is such a good sport in so many ways.

My arms and shoulders are weak. If I need to reach sometime that is eye level, I go on my tiptoes because then I am a bit taller and it means 3 less inches I have to lift my arms up. Everything is heavy.

My hands. The fingers are starting to curl in. Some fingers I can't extend all the way. It makes for an funny wave. My right thumb barely moves and for the most part it stays curled next to my palm. I do try to stretch it throughout the day. If I want to grip a glass in my right hand I will use my left hand to position my right thumb and then wrap the rest of the fingers around to grip. Drinking straws have become handy to eliminate the need to lift a glass all of the way. There is concentrated effort to keep my hand steady while using utensils in general. I use my left hand to pick up small objects. When taking my meds. often I will dip the tip of my finger in water and then when I dab at a tiny pill it will stick. From there I just have to lift it to my mouth. For all the zippers on my pants, there are now attached loops where I can hook my finger in and pull up. There is no way I can button my pants and so I use my fastened belt to keep things flat. At church picking up the sacrament bread and tiny water cups is difficult. Trying to shake hands with someone when my thumb doesn't lift up is awkward.

My legs. Balance is an ongoing problem with the result being more falls and more bruises. The real eye opener was when I tripped on a gravel path and went down. I was able to get my arms out in front to break the fall. But there was not enough strength to prevent me from grazing my chin and nose on the gravel. Braces and my hiking pole should be the norm when I'm out. When I don't use them it's because I am being stubborn or stupid. Probably both.

Walking. The heel to toe walking motion has been gone for some time. When I walk in the house without braces I concentrate to get my foot flat because my toes want to land first. It turns into more of a shuffle.

I sound repetitive from previous posts. I think back to a year ago on what I was complaining about then and in comparison to today...back then I had it good! That must mean that I better enjoy today.

(Are these updates helpful? Yes? No? I'll do one more "me" after this and then get back to the kids.)

July 2010 Road Trip

Glacier

Jeff asked where I wanted to go. I requested "somewhere with big wide open spaces and not a lot of people."

It seemed natural that the road trip would take us to Montana.

Erik, Claire, and Megan stayed with my parents while Jeff and I drove north. We took back roads and main roads and saw some of the most beautiful country. After visiting my cousin Jamie and her family, Jeff and I drove to Glacier National Park and then on to Waterton Lakes National Park (it borders Glacier but is on the Canadian side).

I have fallen in love with Montana and can see why someone could go there on vacation and never leave. Granted I was there in July and not January!

In the day to day we are surrounded by so much noise and have access to constant information at our fingertips. I hate when all the "noise" begins to infer with my ability to focus on my children or have an uninterrupted conversation with Jeff. As for the road trip, I loved having a break from computers and television and cell phones (there was a 3 day period where we didn't have coverage) . People are right when they say the phrase "peace and quiet." There is a lot of peace that comes from slowing down and being quiet.

Waterton

We saw lots of wildlife

... I consider myself warned

Popsicles (and the pink cast)

While gelato rules supreme, there is something to be said for popsicles. When I am sitting outside with my kids on a hot summer day a popsicle seems perfect.

and the pink cast close up...

Gelato

(I didn't take this picture)

After Erik had worked on his Great Brain project in school, I thought, "I want to have a Great Brain project too!" So I picked the topic of gelato.

(I admit right here that this was just a weak excuse to eat more dessert...)

My "research" mainly involved taste testing. The gelato from one location was surprisingly bland, while the gelato from another shop made my tastebuds pop. The intense flavor selections are what gets me: Pink grapefruit, guava, passion fruit, key lime, lemon, blueberry, coconut almond, chili chocolate, amaretto, hazelnut and many more. Serving sizes are not so big but this Italian ice cream is so savory you don't need it.

I came up with my two favorite gelato shops, both which also have great panini sandwiches and other menu items.

San Gelato Cafe is on the west side of the valley in the Daybreak neighborhood at 11259 Kestral Rise Rd. Go for a walk around the lake and then head to the cafe for some gelato - yum! (I heard they have live music on Friday nights during the summer.)

Bella Cittas is on the east side at 2101 East 9400 South. If you keep driving east on 9400 South it will take you right up to Little Cottonwood Canyon which is so beautiful this time of year (then again it is always beautiful).

Broken arm for Claire

BEFORE...

AFTER...

The "before" picture was drawn by Claire shortly after we got our trampoline a month ago. And the "after" x-ray was taken Thursday evening as a result of that same trampoline!

Following the accident we took her to a nearby hospital thinking it would be a simple 3-step process: x-ray, cast, home.

The x-ray revealed a nasty break and we were told to go to Primary Children's Hospital. Jeff drove her there and she went in for surgery around 11:30pm. The surgeon set Claire's arm via x-ray, as it wasn't invasive, and put in 3 pins. After she set her arm the first time Claire's arm had turned white and she could not find a pulse. The surgeon removed the pins and re did the procedure. Following the surgery the dr. found a pulse on her arm below the break but was still concerned that the blood flow to her lower arm was being limited.

At 6:00am Claire went in for surgery #2 with the same orthopedic surgeon, along with the chief vascular surgeon and a Fellow. They sliced open her arm and found that when the the bones had been reduced (put back together) her artery had gotten caught and pinched between the bone. So as the orthopedic surgeon was putting the bones together (again), the Fellow lifted up Claire's artery so it wouldn't get caught, and the vascular surgeon put in the pins ( for the 3rd time).

The orthopedic surgeon performed 11 surgeries on Thursday night/Friday morning, and 6 out of the 11 surgeries were trampoline related. Of course we asked, and no, there is NOT (or ever will be) a trampoline at her house.

I joined Claire and Jeff after surgery #2, and spent the day at the hospital. I know it wasn't a life or death situation, but seeing my child laying on the bed hooked up to an I.V. was unnerving. Claire spent Friday night at the hospital so they could monitor her and make sure things were working properly.

She came home Saturday morning her arm was all wrapped up and in a sling. Megan saw it and said, "That's a BIG band-aid!" I have always thought Jeff was a great dad and these past couple of days again proved it. He has super-dad status!

Fortunately, before this week, we haven't had to spend much time at Primary Children's Hospital (once for a few hours when Erik was a baby). Having been there I can say we were impressed with the care that Claire received. Everyone we interacted with was great.

The whole thing turned out to be more than the 3-step process we had hoped for, and we are glad to have her home! (Claire should get a cast on Wednesday.)

Alan

This past Saturday we went to the funeral of my Aunt Julie's husband, Alan.

Alan was described as being a man of courage, strength, kindness and faith. His garden was so beautiful they said he didn't have just one, but two, green thumbs.

Simply by being around Alan made me want to try and be a better person. He was an incredible man.