Tuesday, October 4, 2016

Beautiful Flowers Still Grow

Thank you to The Mighty for publishing the following story about one of my precious grandmothers and her journey with dementia.  I thought I would also share the story here on my blog with some additional photos of Grandma Horne.

                      What I wish I’d known the day my grandma was diagnosed with dementia  
                                                        By Jenna C. Hoff
Circa 1985, Jenna,
 Grandma  &
Grandpa Horne

My grandma and I were always very close, and so when she was diagnosed eight years ago with sudden onset dementia, it was absolutely devastating. One day she was the same cookie-baking, soup-making, blanket-knitting, card shark of a grandmother she’d always been, a sharp-as-a-tac woman who lived independently and still drove her own car at the age of 92… and then practically the very next day she couldn’t do any of those things.
I remember walking out of her hospital room days into her diagnosis of dementia, heartbroken and reeling.  However, if I could go back in time to those scary early days, there are a few things I would tell myself.
Even though dementia has been a thief that has robbed her of many of her abilities and has stolen her short term memory, it has never ever been able to take the most important part of her: her spirit and her essence.  Every time I get to feel the softness of her wrinkled, almost 101-year-old hands in mine, every time she chortles with laughter, and every time I look into her aged-and-yet-still-glowing-with-joy blue eyes, I connect with her spirit. It doesn’t matter that she has lost the ability to do what she once could; the essence of who she is remains inside of her, and that is what really matters.
Spring 2016 picnic
in the park
She teaches me how to live in the moment. Over the years, her short-term memory has continued to decrease and now is only a few seconds long. It can be hard to communicate with someone who cannot remember from moment to moment what she is doing or what we are talking about. For a while I wondered what was the point of having her over for supper or taking her on a family picnic when moments after the activity finished she would lose all awareness of having done it. However, then I realized that in the moment she does the activity, she truly enjoys it. One just has to see her eyes sparkling as she basks in the sunshine on my back deck or relishes a hot dog cooked over the fire to realize these moments really matter to her and bring her great pleasure.
Love circa 1981

She has given us the opportunity to love her back. All through my childhood her strength and love were an incredible role model to me and played a big part in the woman I grew up to become. Now, it is my 
Grandma, Trevor, Maddison
and my family’s turn to love her and care for her. It is a privilege to gently rub her 
My mom with grandma
back, paint her fingernails pink, and even to answer the same question repeatedly every few seconds. It is an honor to have her over to my home for Saturday supper, just as years ago she once faithfully cooked Sunday supper for me every week.

She has shown me just how fragile and precious life is. Two years ago, I was called to her bedside to say goodbye and told by her care team she might not make it to the morning. I would have done anything for her to wake up again. 
So thankful for the
gift of extra time
with Grandma Horne
 Amazingly, the next morning, she did wake up and not only rallied but went on to make a miraculous physical recovery. These two bonus years have been an incredible gift full of hugs, family gatherings, and the showering of her love. At this stage in her life, every single moment we share together is incredibly precious to me and will be cherished all my life long.
I don’t mean to make light in any way of the hardship that dementia has been for her, nor to minimize the losses that dementia has caused in her life. It certainly has not been an easy road, neither for her, nor for us, her loved ones who have walked alongside and cared for her during her many year battle. It is not a diagnosis I would ever wish on anyone’s family member.
However, I believe life in any form is a gift; my grandmother’s journey with dementia has shown me the deep value of every person, a value not based on what a person can or cannot do. 
Maddi and Grandma
All my life this special woman has been both a teacher and a blessing to me, and her diagnosis of dementia has not changed that in any way. I am so thankful to still have her in my life and for the lessons she continues to teach me each day I spend with her.

It would have surprised me deeply on that long ago day she was diagnosed with dementia to hear that beautiful flowers could still grow in our relationship, and yet that is exactly what has happened. Alongside the sorrows and losses of this horrible condition, love and joy have continued to bloom, and there have been gifts… so many gifts. The biggest gift of all is having her still in our lives.

Friday, September 9, 2016

Positives in the pain

September 7  is never an easy day for me. It was many years ago on September 7 that I began a journey I would never have chosen for my life ever.  Living with a condition that has caused severe chronic pain and been progressively physically disabling has not been easy. But this year  I determined that instead or moping or feeling sorry for myself on September 7, I would write an article counting the many positives that have come from my challenging journey, focusing on the good God has brought into my life.

Thank you to The Mighty for publishing my article on September 7.  You can read it on their website (double click on the word "website") or for your convenience I've copied and pasted the text from the article below.

17 Positives That Have Grown Out of My 17 Years With Chronic Pain

Tomorrow is a dark “anniversary” for me.  As of tomorrow, I will have lived with a severe form of chronic pain for 17 years. It will be 17 years since I lost my ability to take a single awake breath without an awareness of the constant pain I live with or to move my body easily and freely the way I once could.

September is Pain Awareness Month, and I’ve read some good articles about chronic pain, including the negative impact chronic pain has on a person’s life in a way that is hard to understand unless you’ve walked in these shoes. I’d be the first to agree it is hard. It’s a condition I’d never wish on any person, ever. It’s not something I would ever have chosen for my life. Like most people I had big dreams for my life, and chronic pain has been a thief that has stolen and/or rearranged many of my dreams. I’m not happy about living with chronic pain.
However, in every situation in our lives, I believe we have the opportunities to see the positives alongside the hardships. We all have a choice to choose joy in the circumstances, whatever they may be. And so, as I sit on the eve of my 17th year with a condition I never would have chosen but is nonetheless part of my existence, I choose joy. And I choose gratitude. And I choose to seek out the positives that have come in my life out of this most challenging situation.
1. An iron will. Having to fight so hard for 17 years has made me iron-strong. My body may struggle but my spirit has become strong. Every day that I’ve had to fight against the pain, every time I’ve had to self-advocate or fight against the stigma that can accompany a chronic pain diagnosis, every time I’ve had to choose joy in the darkness and a spirit of light even when my body is in agony… that has made me strong. Every time I’ve had to face another loss, be it my chosen career as a physical therapist
or the ability to easily speak, walk, drive, and be independent in the way I wish I could be… that has developed in me a spirit of iron and a drive to never give up. Ever.
2. Resilience. I know what it is like to face loss after loss for 17 years. And yet, again, we all have a
choice to be joyful. I can choose hopelessness or I can choose to keep facing each day with hope and a determination to eke out whatever joy can be found.

3. Self-advocacy. I’ve had to learn to become a self-advocate in a way that other people may not have had to. I was never a child who could stand up for herself, but as an adult I can do that very easily. I’ve learned to stand up for myself in a way that is positive and not harsh, using a diplomatic, gentle manner that nonetheless fights for my rights in a way that helps others increase their understanding.

4. Empathy. I used to be pretty self-focused, unaware of the hurts and needs of others. Living day in and day out with a medical condition that has caused me to struggle and physically suffer has opened my eyes to those around me. I’ve learned that we all struggle in some ways in our lives, and I hope that my own experiences have developed within me deep compassion for others.
5. Peace. As a child and young adult I lived with high levels of anxiety. As I sought out various alternative treatments for my chronic pain over the years, I came across novel solutions that have brought me to a place of peace. Things like deep breathing, relaxation, reshaping my thoughts, and reading about novel philosophies have taught me how to relax my mind, body, and spirit.  Peace is now my way of life.
6. My relationships. I used to be a highly competitive person and my relationships reflected this.  Through my 17-year battle, I’ve relaxed my standards for myself and become much more accepting of the people around me.  My aim is to be gentler and more loving.
7. Self-acceptance. I used to be incredibly hard on myself. I still try to set high standards, but to an
extent I’ve learned to give myself a pass when I don’t measure up or succeed in the way I want to.
8. A new understanding of failure. Likewise, I used to fear failure as the worst of enemies. Living in a body that simply cannot do all the things I want it to do or to experience has caused me to fail at various stages in my life, teaching me that failure is OK. It’s not to be feared, it’s part of life, and it can be a conduit to further learning, growth and maybe even success.
9. Gentleness. My own failures and struggles have taught me the importance of gentleness, not just with myself but with others.

10. Figuring out my strengths. Having faced so much failure and loss has surprisingly shone a bright light on my strengths. For example, although verbal communication is a challenge for me, written communication is an area of strength.  Writing has not only opened doors for me, but has allowed me the ability to communicate well to others what it is like to live with chronic pain, be an adoptive mom, and live a life of joy in the face of difficulties.

11. Creativity.  I’ve had to become creative to an extreme level these past years. Chronic pain has taught me to seek out novel solutions to difficult problems and this creativity has translated into other areas of my life. I have become, over the years, a solution seeker.

12. My kids. Because of my condition, having children the regular way was not an option. However, this opened up an amazing pathway six years ago to adopt a beautiful then-10-year-old daughter who has been the light of my life. And, last week another wonderful surprise happened! My daughter’s older biological brother moved into our family and it is an incredible gift to have him join our nest.
13. The gift of modelling to my kids every single day how to get up despite struggles and do what one can to live a good, positive life. My kids live with disabilities and challenges, and I hope that as they see me daily strive to live well despite my own disabilities and challenges that they witness a strong example that stays with them all their lives.

14. An enhanced ability to advocate for my kids and to access needed disability-related supports for them based on the advocacy skills my own journey has taught me.
15. Humility. My ego has been knocked down many times through this experience and that is not
necessarily a bad thing. I’ve learned that I don’t have to be the best at things and that my inner confidence can remain unbroken even in the face of my weaknesses or what I perceive to be the judgement of others. I’ve come to know deeply who I am, and to love myself for the woman I believe God has made me to be, flaws and challenges and all.

16.  Experiencing true kindness of others and the creation of a strong support system. I’ve
had so many people bless my life with kindness, from a team at my church who have brought me a meal every single week for the past several months; to my husband who has loved me faithfully for many years despite the challenges; to friends and family who have walked alongside me on my journey with great compassion; to my caring home care nurse with whom I’ve forged a special bond.

17. A realization that life is an incredibly precious and wonderful gift. While I would do anything to regain what I’ve lost, at the same time the losses of some of my abilities and activities have taught me to utterly cherish what I still have. I don’t think one can walk through the deepest of darkness without developing an appreciation for how wonderful light is. Going through very difficult circumstances for 17 years has opened my eyes and created an awareness in my spirit of just how precious life is and how lucky and blessed we all are to live in such a wonderful world.

Sunday, September 4, 2016

When love creeps into your heart

                                                  My family has some very exciting news to share: our nest has grown! A few evenings ago a special young man named Joe moved into our home. Joe's younger sister is our daughter Samantha, and in the 6.5 years since we adopted Sam, Joe has become very dear to our hearts. It is with great joy we welcome Joe!  

The other night, a few days before Joe moved in, I sat outside in the cool of a late summer's evening, quietly watching as the sun's last light waned over the darkening sky. As my spirit absorbed the silence of a dawning night, my heart quietly listened, mulled over life, and grew.

I have been contemplating the theme of nests lately, and that night my mind remembered back to when my nest began. Eric and I had been married a few years when we became parents for the first time.
Meeting Sammy for the first time
1st full day together
From the moment I saw our daughter's slight frame shyly enter the sterile social worker's office it was love at first site. As she peaked up at us from a cherubic elfin face I knew deep in my heart I'd love her forever. Sometimes love is like that: fast, instantaneous, a wholehearted diving in with all your soul has to offer.

And sometimes, love comes slowly, creeps up quietly in your heart and nestles in until you wonder how you ever lived without it.

I first met Joe 6.5 years ago as he stood quietly in the doorway of our old house, shyly saying hello as he and his foster mom dropped Sam off for a pre-adoption visit.
Siblings reunited 2010

Xmas 2011
Joe lived in a fantastic long term foster home in
 another town and we and his foster mom made it a top priority to keep the two siblings in close contact with regular visits.
museum 2011

For the past 6.5 years, every month or twoJoe would fly to my nest, perch on the edge for a day or two or twelve... and then fly back home to the safe and cozy nest in which he lived.
Red Robins 2014


high school grad

Suddenly a few weeks ago we were asked if Joe could come to us.  We had very little time to make a decision, but sometimes you just know in the deepest part of your heart what the right step to take is. This was one of those times. With God whispering into our spirits to go forward in faith, our nest expanded.

And so, on that quiet evening on my back deck, as I sat beneath my
favourite tree and watched the stars slowly appear and begin to twinkle in the darkness my spirit realized what my heart has known for a very long time. I really love Joe.

Moving in 2016!
Joe has now been in our home for 4 days, and yet in a funny way it feels like forever. He is fitting in seamless with the personalities and spirits of our family. His gentle sense of humour, creative ideas, and kindness have been fun to get to know in a new way. I've had fun cooking with him and chatting and hearing some of his ideas (he has great plans to expand the sunroom where I grow a few tropical plants during the winter into an indoor rainforest type of room). 

There is a long line of special women who have loved and cared for Joe over the years, and their love for him will remain a constant in his life. In particular, he has an amazing foster mom under whose care he flourished for the past 7 years and who will continue to play a role in his life; a special Grandmother in Heaven;  and a birth mother he loves deeply.   These women will long be part of Joe's life and heart and I can never take their place, nor do I want to.

winter 2015
However, that said, I am thankful for the unique relationship he and I have and for this new role I am stepping into in his life. I am so overjoyed to have Joe here in our home!  I don't know what the future holds, and that is okay. For, today Joe is here in our nest, and I am thankful for that fact. Whatever the future, my heart is filled with joy to have him in my nest today and to care for him for as many tomorrows as God grants.