What If?

All of the "What ifs?" and the "If onlys" can haunt our lives if we let them.

However, as quilters, and as bloggers, the "What ifs?" can also spur us on to incredible journeys into new directions, or thought-filled posts of contemplation. It can lead us to value, and to create our own personal spaces for contemplation, as well as for art.

It can lead us into the beauty of nature, or deep into meditative contemplation spaces, or corners, or nooks....or maybe just a table piled with sketch books, pens and colored pencils, or piles of bright fabrics that excite us.

We sit, and we think, and we choose, and we plan. What do we want to make, why do we want to create it, and what fabrics and patterns, and embellishments do we want to add?  And sometimes, we are so inspired...we just rush headlong into it .....and never stop to eat, take a deep breath, or think... as we simply create.....that which we seem so totally driven to do.

But in real life, as is often the case with quilters in their quilting, the "what ifs" can also paralyze us with indecision, or regrets, or the downward spiral of ones enthusiasm. Sometimes they can so halt our own abilities to even begin a new journey ....or continue on the road of one that just seems too hard..... or as having too many challenges, or hard choices.

And that is why "What if?" is often used as the genesis for contemplative art projects, or as quilting....or art quilting challenges.

When I contemplate the "What ifs" of my own personal life, it is filled with the many challenges and crises faced by my own family members, or my own self whether personally, or when combined with theirs. And as I reflect on that journey, I see so many parallels between the contemplative, or creative journey...and the journey that we all face in our own often far too real, and all too personal lives.

My life has been filled with the most amazingly unbelievable sets of circumstances and occurrences that it fills me, as both an artist, and as a quilter, with a multitude of contemplative 'what ifs.'

This 'what if'......my little 12" x 12" art quilt was created as part of that process. Spurred on by a Quilting Arts magazine challenge but turned into my own personal and contemplative process of looking at my mother, my self, and our shared lives, as they intersected on one final, and very long and challenging journey of turning the pages of a memory book of our own lives.

So.. I began the journey into my mother's own descent into her aging years, and her health battles that careened her into my own very real, and very personal life as an adult.... and it became a journey that forever entwined us together..... and changed who we both became.... as mother and daughter, forever.

What if my mother had never been diagnosed with Stage 3b of advanced inflammatory breast cancer in 2002? What if her doctors had not immediately sent her to Seattle for treatment? What if her assigned doctor had not chosen to go on a three week vacation immediately after meeting her? What if living in a Seattle hotel for the month before and after finally getting the appointment to meet him had not been so incredibly hard on my aging parents and very ill mother?

What if I had not gone up and brought them home with me and finding a doctor in Salem who could see her immediately? What if my loving touch, caring heart, and persuasive ways had not talked her, and helped her, and guided her gently, step by step into the next 9 months of hard core chemotherapy, a mastectomy, and intense radiation. What if we had not saved her life?

What if we had not saved her life, and she had not lived the significant milestone of being totally cancer free for 5 whole years...only to begin the horrendous symptoms of Alzheimer's Disease?

Yes, it was so amazingly hard to do all of these things. To live with a mother that I had not always gotten along with and to learn to love her with all my heart...as I did every thing, every single day of those 9 months to help her, and help my father face their deepest fears and go thoroughly intensely challenging processes?  That is the hugest 'what if' of all and the one that changed my own life and how I viewed my own role and the process of being brave enough to do the work..forever, and ever.

There are no words to tell you what I would have missed out on. The depth of the bond that grew between the three of us, the trials and the fears we faced together, the way I relied on their courage, and their strength, to allow me to do, and be, all that I needed to learn to do, and be..... for her, for them, for myself, and yes, even for our entire family.

It was huge, and it was hard... but we did it.

And then five years later....when I realized my mother was exhibiting almost unbelievable symptoms of Alzheimer's, not just being dizzy and falling over and over and over, but hallucinating and being paranoid, and having the most awful delusions and visions she swore were real. What if.... thing had been faced differently, done differently then?

And always, always, always..it was me who had to be the catalyst, the one who remained understanding, and willing to work through the walls, and the battleground of the disease process. Me, who seemingly had to face hard truths when others only wanted to run from them, when others were in denial and I had the task of bringing them out of the easy safety of denial into the hard awakening of bringing forth unconditional love to help her, help my dad, and yes....even finally into helping me when previously they had seemingly made it all so much harder for me to do what had, and needed to be done.

What if....."What doesn't kill you makes you stronger."

That is the biggest "what if" of all. And strength is not measured in easy gradations of successes. It is a demon filled path of challenges that you simply face up to, battle from moment to moment, day to day, and day by day. And the exorcism of those demons is always the fear within each of us.

What if?

As you have read so many time here, I have lived with her, and my father when he was alive, for a combined total of three years out of eight. She was 40 to 50 lbs lighter when I made this little art quilt, than in this artistic depiction, for Alzheimer's as many people don't know or don't realize...is a physical disease, it is not a mental disorder.

Yes, it ruins the memory but it is not a 'mental illness' like schizophrenia or bipolar depression. The disease process is the creation of physical plaques.....imagine alien looking tangles and clot like particles that fill up the brain, overwhelming its own tissues and creating disconnect all of the neurons that transmit information from the brain to all other parts of our bodies. It has taken away from her 'mind' and taken away from her body. Every single part of her.... with the exception of a few personality traits like humor, that we treasure....but all the rest of her...mentally, and physically has been affected.

Because of that disconnect, and finally almost all connections, she has lost all of the memories that we shared as we looked at and read all of the photo books I created for her over those eight years, trying to recreate and help her hold onto her life memories for as long as possible. She can barely open her eyes, or talk, or lift a hand to help feed herself. And now, it is my brothers who lift, carry, feed, change, dress, and care for her now as I am no longer physically strong enough to lift, much less carry her, by myself.

Yes, she she became someone very different....but so did we.

By the time my mother finally died, she weighed about 80 lbs. She was literally skin and bones. She was in coma like state and could no longer even move the one hand she once was able to feed herself with. She wasn't hungry, she wasn't thirsty, she had no idea of who was feeding her, changing her, carrying her up and down snow covered stairs and into a van to take her to the doctors office once a week..why, because they could not/would not legally come to our home to test her blood while she was on medications for her blood pressure.

Her blood pressure???  Her doctor, and several of my brother believed there were still benefits to maintaining all of her med..Alzheimer's pills, blood pressure pills, aspirin, and insulin. The discontinuance of any or all of these would not have changed the quality of her life, only its length and sheer endurance for her, for us.

There was very little now that my mother remembered by her last year of eight long years and into her 9th. . Not what she what she even eating now, much less 5 minutes ago, not who was feeding and caring for her at the time, much less that morning, or last night, or a year ago. We were not even sure if she remembered our father, or her children, or any of her grandchildren....not even in the deepest recesses of her brain's memories.  Clarity came and it went during the last 3 or 4 year until it eroded into tiny glimmers of awareness, tiny bits of being awake to eat, or to listen, or to respond to a voice as we spoke to her in person, or in my case over the phone when back in Oregon.

One week, I told her that I loved her and she said "I love you, too, Michele." That was a rare and special gift ..from her to me. There were weeks, when no one could even wake her up to listen to me, to see if we can spark some tiny bit of recognition.

Some years, we are unable to even wake her up to even hear my voice as I wished her a "Happy Birthday" or a "Happy Mother's Day. I wished them for her anyway. I never stopped hoping that this phone call, she will speak a word or two, or perhaps just a facial expression that she hears me.  I told her that I loved her, and how very much she meant to me. Each and every time, I didn't know if it was my last chance to say it, her last chance to 'hear' it.

But in this process, before that awful last few of her very long 8 long years with this disease, she was a mom,a mother, a person, that we never had before. She has been someone we never knew before, and we have all become, and been, and have changed into the strong, and capable, and fear battling people that we have all become....people that most of us never even knew that we were before.

And not all of it was bad or challenging. For a very long while, she was the sweetest, dearest mom I'd ever known.  She was no longer in the horrible chronic pain that had plagued her for most of her older life. Free of the depression that struck so horribly in our childhoods. Free to be freely loving, and filled with gratitude to us and for us..and no one and  nothing, not even this horrible disease could take that away from us.

And now, as we loved her with all our hearts, as we continued to take turns caring for her, in our childhood home, on an island in Alaska, completely by ourselves, we remember the good times, we remember the value of loving and being loved, of caring for as a way of manifesting that love.

She was surrounded by loving hands and giving hearts because we were her family, because we were willing to keep doing this incredibly challenging work ..because quite frankly, no one else would, no one else could ..simply because of money and our geographical location and the choices that agencies made regarding giving us any help..

Social services may have let her down, depleted Medicare funding may have let her down, limited medical resources may have let her down.  Our only nursing home has a ten year waiting list, the smaller 15 bed one always full of emergency and short term hospital rehab cases.

So, we, her children,  battled our own physical pain,  our own holdings, and our own longings for our own lives with far more freedom to be there for her, no matter what, for as long as we possibly could. And because of one brother who moved in..with his family, into her home, we made it into her 9th year.

And the day came, looking to her 88th birthday on September 1,2013 that instead of feeling only the challenges, only the losses,  I saluted her courage...and ours... to face her/our own fears, her/our own inner 'demons', her/our own weaknesses to rise above all of them and just keep on keepin' on, through almost incurable end stage breast cancer... and into 8 long years of Alzheimer's Disease....I honor who she became in that process, and who I became in that process.

On that very last birthday, I phoned her from Oregon..having just finished up doing a DIY wedding..dress and all..for my youngest daughter. I called her and I thanked her for all that she therefore allowed all of us to become as well.

I yelled out to her "Happy Birthday, Mom!" and she answered..."Thank you."  She may not have even known who I was, but it was the first thing she had said ..to anyone...in weeks and weeks..and I was blessed.

Happy Each and Every Birthday, Mom...we all love you, and thank you for being our mother with all of our hearts.

 My mother died, to the day, one week later. And against all odds, I made it home to Alaska through 15 hours of mixed signals and 4 canceled flights in order to kiss her goodbye before she was 'ashes to ashes and dust to dust' as my proud and strong father always said about the natural cycles of life and death. For this dear man, cared for her, right by my side, every minute I did, or my brothers did until his death in August of 2010.

Together, in whatever dimension, forever now.

Turning the pages of our memory book..always ..you and I, side by side until we reach the final page where it says "The End."

Love you so much, my  sweet, precious, little mama, my proud and steadfast and strong papa.

(tenses changed after her death)

"What If My Mother Had Never Gotten Alzheimer's?"
12"x12" art quilt

My own hand dyed cotton fabric with oil stick and rubbing plate embossing; pencil sketching, colored pencils, crayons, Shiva oil sticks on cotton fabrics, free cut and free piecing, raw edge applique, and free motion quilting.

And the biggest "What If?" for me as a quilter? It allowed me to experience my own creative journey from traditional quilting into art quilting. It allowed me to face my fears of 'never enough time to breathe, much less to have my own life, into one of finding time for all of the things I want to do, and even more...things I love to do.

It allowed me to become a volunteer, and a quilter for Ami Simm's brigade of quilters for the
Alzheimer's Art Quilt Initiative (AAQI) It gave me the opportunity to find time, to make time, to grow as a person, as a quilter, and as an artist..... in ways that I might never have grown before.

"What If?.....My Mother Had Never Gotten Alzheimer's?"

I can no longer imagine. The challenges became the gifts and all of the 'what ifs?' became history and her story, and ours.

What If we had all missed out on the miracles of these gifts?

Post Note:
My beloved mother, Nell Grace Pelletier/Peltier Savikko, passed away on September 8, 2013.

And I am so incredibly blessed to have experienced so much, felt so much, learned so much, but most of al learned to love so very, very much during all of these most challenging of times and years.


Goodbye, to My Sweet Little Mama
and my own eulogy over the loss of my mother.

Bringing Back the Light
Back to the Love and the Light in the Loss of a Loved One.

Anniversaries of my heart with love and loss always interconnected.

Michele Bilyeu blogs With Heart and Hands as she shares a quilting journey through her life in Salem, Oregon and Douglas, Alaska and all of her AAQI Quilting. Sharing thousands of links to Free Quilt and Quilt Block Patterns and encouraging others to join in the Liberated Quilting Challenge and make or donate small art quilts to the Alzheimer's Art Quilt Initiative (AAQI) Help us change the world, one little quilt at a time!