Monday, February 15, 2016

President's Day


In honor of President's Day! From our 17th president - thanks to my 5 year old refreshing my memory :-)

And we know it's been more than four years for this girl!

Hope your kids aren't driving you crazy after a long weekend.
Cheers!!
Tina

Sunday, February 14, 2016

Illness: "What is Alzheimer's Disease?"

... & our brief story shared by Senator Jerry Moran on the floor of the US Senate in 2015.

Tomorrow, February 15th, I will attend the State of Alzheimer's Disease Address at the KU Research Center with special presentation by Dr. Richard J. Hodes, Dir of the National Institutes on Aging. I look forward to hearing about the progress made in research and the work toward increasing funding to date. On May 14, 2015, during his address to the US Senate regarding Biomed Research and NIH funding, Senator Jerry Moran, shared our family's story with our mother's Dementia / Alzheimer's. While you will gain context by listening to his introduction, our story is at approximately, 3:40.

http://www.c-span.org/video/?c4537808/senator-jerry-moran-speaks-alzheimers-disease


Take 3 minutes to educate yourself and better understand the disease process. This YouTube video by the Alzheimer's Association is hands down the best! It can be found at this link: "What is Alzheimer's Disease?" https://youtu.be/9Wv9jrk-gXc

And for my data friends - these numbers will get you geeked up!

FACT: Impacting more than 5 million Americans with approximately 500,000 people dying each year, Alzheimer's is the 6th leading cause of death and is the only one of the Top 10 killers, that cannot be prevented, cured or even slowed.

The following facts are shared to provide comparative perspective. All diseases deserve appropriate funding and awareness:
As of 2014, he NIH spends $3 billion a year on AIDS research. Alzheimer’s, which affects more than five times as many American’s, receives just under $500 million a year.

2/3 Almost two-thirds of American with Alzheimer’s are women. In her 60s, a women’s estimated lifetime risk for developing Alzheimer’s is 1 in 6. For breast cancer it’s 1 in 11.

Saturday, February 6, 2016

Because it's mine... Stay Home Day

Because it's mine...
As I begin this blog with stories about my Lifebreak, this is a story written last February in one of my writing classes to express "Dialogue".

It warms my heart to share and also recall these moments as my children grow before my eyes each day. Taking a moment to reflect on their innocence, their influence on me and the love we share, is an incredible opportunity that I try to breathe in daily.

Stay Home Day
Before the music is supposed to begin the day, my eyes flutter to the view through my open blinds - the early morning sun.
The bare tree limbs sway gently and my father's wind chime quietly welcomes me to awaken.
The house is still - quiet - silent.
I breathe in; taking in the blue hues of my room and the sky.
I breathe out. I am grateful.
My legs move under the soft sheets to roll to my right... instead of my husband, the little one is there again.

"Good morning, mommy." My little man states softly, barely awake himself.

I whisper back, "Good morning, my little love."

His sheepish smile emerges as he reaches his tiny, warm arm around for my neck and pulls himself close to me.

"How did you sleep, my love?" as we begin to wake together, my voice still soft, taking in those loving moments that I know are growing fewer with each passing day.

"Goo-od," drawn out with another smile as he nestles into my neck and pushes his other arm behind the pillow to take in a full, morning hug.

"Oh, big hugs this morning! Thank you, Love."

"You're welcome, Mommy!" his energy beginning to rise as we hear foot-steps from the hall.

"Well Good Morning, b-bear!" I say to greet him again this morning.

"Hi Mom", still drowsy; I know what he wants.

"Get in here big boy, we were just snuggling. Get in here and get you some too!"

Big hugs all around as daddy joins us for the snuggle train.

"Mommy?" My little man's pitch is rising.

"Yes, my love?" I know what's next. At four, he knows his days of the week and he is hopeful that it's that time again.

"Is it a 'Stay Home Day'?" He's now lifted his head, cocked to the side with that inquisitive look on his face already, eagerly awaiting my response.

"Yes it is, Z-man." I smile back, as he squeals at the top of his lungs. "YEAHHHH!", with so much delight, most would think this reaction is reserved for Christmas and birthdays.

Our day has begun and the energy of two boys has completely kicked in.

The ones that I can barely drag out of bed on time during the week, are not going miss a moment of the weekend - and we're off!

Friday, February 5, 2016

How do you help...

At some point in our lives, there comes a time when we can't do it on our own.

As a type-A, Aries, bossy pants, recovering-manager, and servant leader, by nature, this is not how I think. But after a few decades of doing it all on my own - and thinking that was the 'best way' - I have learned I can't do it on my own. And moreover, why should I?

We are surrounded by amazing people every day in our lives - family, friends, co-workers, school, church, sports, activities, classes, colleagues - even if you 'live' only in social media driven environment, your virtually surrounded by hundreds or millions! So why did I go for so long thinking I had to do it all on my own?

We could delve into how we are raised or the environmental factors that directed us into 'you have to do it all' roles, blah, blah, blah. But at some point, you will be exhausted with it and simply what to scream for help!! Who will be there to hear you? How will you ask if you've never done it before? One of the most poignant times in your life may be with your children. It may be watching them struggle with developmental delays or athleticism, not getting the part in the play or the orchestra chair they worked so hard for and the list goes on. For many it may be struggling in school - which is where I am today.

I was never an academic scholar (although I attended a magnet high school) and my husband (the athlete) may admit it wasn't his strength either - we had to WORK to make our grades. But the rigger of school and expectations of the public system is a whole different beast today - even at the elementary level. Let me be clear: I have great respect for teachers because I know their hearts break when they see students struggle in the classroom and fall behind - yet they know they must push forward with the curriculum. Teachers love our children in a way I never understood until I had children of my own - and I could not be more grateful for the teachers we've had so far - Thank you! Yet as a parent, you have that gut feeling that something isn't clicking for your child. You're at a loss as to how to approach 'the beast of a system' as it stands today and find an effective way to advocate for your child. And when you have a 'do it all' mentality and 'you can't do this', where does that leave you? At the mercy of others - and mercy is there!

In tears last year during a meeting for my sons IEP (individual education plan), I frustratingly shared that 1) I am not a teacher (obviously) and don't know their strategies; and guiltily, 2) I don't know how to help my son. As a parent - This a low point. It is our job to protect, support, nurture and help guide them in this life - their education - is our primary focus at this age. What do you do when you've spent 20 years building an incredible career and business but can't help your own child's learning needs in the classroom. Kind of a wake-up, huh? Anyone else been there? This is another area that may not be pleasant discussion with people; to admit your flaws, vulnerabilities and insecurities. Ick!? No thanks! Not in today's world of perfection, reality TV, entertainment sells, Facebook Envy and living vicariously through what some believe is real, in social media.

Once you get over your 'do it all' self for the benefit of your child, the school really is here to help. YOU MUST ADVOCATE, and be willing to ASK for assistance - you can't do it yourself and that is OK - you don't have to! While this is true in our school district - I cannot speak for others, nor begin to perceive the frustration in under-served districts around the country. My son really does love school, reading and learning - we've just got to find a method that will keep pace with the expectations. As we move into the next 60 days, I am hopefully after our discussion this week with his IEP team that 'we' will figure out a way increase the pace, keep him engaged and maintain the standards and expectations of Common Core, No Child Left or Everybody gets a Trophy; whatever the public school theme or target is currently. ;-)

God Bless our underpaid, over-stretched and loving teachers. Please keep giving all you can; you are making a difference for these children and their parents. For those that don't thank you directly or present you with a token of appreciation, let me say, you are appreciated and cared for more than we express. Thank You for letting us be vulnerable to ask for help in this journey with our children.

Today we touched on "Asking for Help"...
Our job is to Understand what to ask, Advance by being vulnerable to ask and Strengthen ourselves and our lives to move forward.

So much more to come and thank you for sharing this venture with me.

Life is short; my Lifebreak continues...
All the best,
Tina


Thursday, February 4, 2016

It's been a year..."Illness"

...today is February 4th and I attempted this blog a year ago. What have I been doing?
One thing is for sure, not sitting on my couch with my feet kicked up watching TV!

Life is short and my Lifebreak began December 2014!!

Today, let's catch up: It's been a year..."Illness"
3 days after I started this blog venture, my mother passed away at 67, after and 8 1/2 year battle with Dementia/Alzheimer's. To say she is in a better place, is a gross understatement. My father passed away unexpectedly 27 months before mom; my brother and I became her primary guardians and did our best to ensure she had safe living conditions and professional support for her healthcare needs. She moved 10 times in the last 13 months of her life. If you know anything about Alzheimer's this is a tragedy in and of itself. But unlike what many may know about Alzheimer's or see in traditional commercials, movies or social media with elderly individuals (70-90 year olds), at 61, 64 or 67, your body is still quite healthy - although your mind is being destroyed daily. And when Alzheimer's disease begins earlier in life, you also metabolize it more rapidly, therefore, patients decline faster.

When you are physically healthy, with Dementia, and have moments of awareness about what is happening to you, your life and losing the ones you love around you, you are distraught, depressed and begin to become physically aggressive - at least this is what happened with our mom. Once a passive, kind, helpful, giving soul, she became someone we no longer knew - physically confrontational to the point of violence and self-destructive behaviors - and she could not help it - this is cognitive decline. We don't blame her; we hate this disease. The moments she knew us, were few in the last 14 months. The blank stares we received when we came to visit turned into violent or aggressive behaviors within hours of our visits. While doctors can't confirm, we truly believe she would remember us after we were there and was so distraught that she could not communicate with us, she would become explosive out of frustration. Sadly, after being discharged from more than four facilities, we did not visit her for more than six weeks - including Christmas - for fear that she would have another outburst and be discharged again. By this time, she was at a facility two and half hours from us and we couldn't risk her being moved further away. The only gift during her final months, was one of her doctors (now the third or forth in as many months), asked to meet with us. After more than an hour of providing observations and his personal/professional experience, he shared a potential timeline with us - less than six months. For many who see that as a 'death sentence' - we saw it is a blessing - her life sentence; she only had to suffer - in her own mind, a little longer - as it failed, her body would begin to wither as well. Alzheimer's began attacking the parts of her brain that would affect her ability to process food, filter her nutritional needs and swallow which would eventually reduce her to less than 90 pounds after losing 50 in the previous five months.

This is Alzheimer's. This is one of thousands of stories from families and loved ones that remain quiet because of the shame, guilt and sadness by those Alzheimer's disease leaves behind. Our mother, except her rares moments of awareness, knew not of her behaviors and outbursts, self-harm and getting kicked-out of facilities that promised to care for her but 'had to transition or discharge' her for the safety of their other patients.

These were her final days, unaware of her surroundings but cared for by others that respected her and helped comfortable her with dignity. We were there several times in her final weeks; when she was finally frail enough that she could no longer be physically aggressive. We went through photos and a few items we knew she loved and enjoyed while we told her stories. The greatest memory I will keep is that although she didn't know me, she knew I had two boys. Every time she saw me, one of the first things she always said was, "How are your boys?" On our one of our final visits, she didn't ask me how they were but when I showed her a pictures of my boys, "Damn"... she said, as she shook her head. "Damn" was one of the last words my mom said to me. Whether pride, disbelief at how big they were getting, it didn't matter. That reaction, "Damn", that moment, is what I chose to remember. That is the strong mother, proud grandmother and friend I want people to know.

However, I also find it important to note that through this experience, I recall a very good friend once describing a meeting with their mother's healthcare professionals, "I don't know who or what that is, but it's not my mother." While not said to be hurtful - it is truthful. To see someone you love, respect and know, turn into someone you no longer recognize - is beyond words and description.

We had to let go. We could not help our mother long before her final days, we had to let that guilt go and simply ensure she was safe with dignity. Understanding the process of what is happening, Advancing from it by letting go and Strengthening to move forward - this is what we do.

This weekend, I will remember my mother as we venture into our first year since she passed - but know it is not our first year without her. She was gone far before 2015 so this year I will celebrate that my parents are together - beyond this world - knowing each other and the love they shared with friends and family. The parties they threw and the joy of times at the lake, boating and relaxing. These are the moments I chose. I miss by parents and I cannot tell you the countless times, I've reached for the phone or wished I would have asked them about ____(fill in the blank, depending on the day). But this is where I am...this is my journey at 41...

Life is short; my Lifebreak continues...
Our job is to Understand it, Advance from what we find and Strengthen to move forward.

As promised before, here are a few examples of what I plan to write about...
Death: More than I know I will share - THE FOUR changed my life forever, Miscarriage-it's not pleasant dinner conversation, Four-legged family
Career: Teacher & Student, Learning Through Service and How to Manage The Difficult Times and let's add, Career Transitions; not for the weak
Home: A Complete Gut, New One, and The Face Lift
Kids: What would I do with a GIRL?! If you can stand some bodily function conversations, we'll be great together!

Today we touched on "Illness" at the end of life but we'll talk about 'the "C" word too'...
Illness: One word: Dementia - Thanks to my husband's suggestion, I was motivated to start this blog. Fact: "The only one in the Top 10 without a cure, a way to prevent it, or even a way to delay or slow it down." - Alzheimer's Association #stillalice #endalz

Finally, this Lifebreak year has included some incredibly important experiences and time with my dudes! I've brainstormed writing opportunities, took a leap with my husband to invest in real estate - no it's not going well. I've taken various business start up and entrepreneurial classes, started an online Etsy business (27treasures) to invest in my craft side - it's been a couple of decades. Started a travel counselor business and traveled a little bit myself, in addition to helping new friends with their Estate Sale business. The gift of seeing others succeed, is sometimes greater than ones personal success! So much more to come and thank you for sharing this venture with me.

All the best,
Tina