We all march, stumble, skip, walk, jump or run through our lives thinking we know who are. We have it figured out! I am a mother, a teacher, a construction worker, a priest, a daughter, a super hero or whatever we identify with to define who we are and where we are going.
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In my early years, I went to college, married twice, divorced twice, had one son and traveled the world.
In my late 30’s met a wonderful man. We married and are still married after 25 years, and had another wonderful son.
So after 3 marriages, two beautiful sons, I finally had it figured out, I knew exactly who I was.
My Life Was On Course
My professional career was in full gear. I became an expert in my field. Traveled with friends and my family whenever I wanted. I had made it! Nothing could stop me. My life was on course, I had a career, a good marriage, retirement plan, my kids were doing well and then BOOM! it all changed.
BOOM!
Prior to 2009 life was good in fact it was fabulous. I knew who I was and where I was going. But then I got the news that changed everything. Our oldest son Zac, then age 26, was diagnosed with a deadly disease called Marburg Variant Disease.
Zac now required 24 hour care and was confined to a wheelchair with profound cognitive impairments. I am his caregiver. All the things I thought were real, the friendships I thought I would have forever, my career, my family and the vision of who I thought I was quickly changing.
In 2010 my husband fell ill with a disease called Sclerosing Mesenteritis. The readers digest version is that it is the calcifying of the mesentery organ that surrounds the intestines and other organs. He is sadly in constant pain and there is no cure, so now I care for him too.
Mom was living with us but her health declined and could no longer stay in the mountains where we lived. In 2014 she left our home and went to my sisters because she lived at a lower elevation. In 2016 we moved out of the mountains and mom came back to live with us but is now on oxygen.
Shortly after bringing in 2018 our youngest son started have horrible seizures. He has also sadly, been diagnosis bipolar depressive disorder with manic episodes and mania.
Who Lives Like This?
When I thought I knew who I was, I couldn’t even imagine a life like this. I didn’t know there were so many people like me out there. People that woke up each day and looked in the mirror and silently whispered, “I want my life back”. People living with the unexpected results of disease, mental illness, and stress that comes with providing twenty four hour care to family members.
After years of care giving the lines show on my face, the signs of gray in my hair, and the person I use to know is no longer there. The old me is a distant memory. The carefree, fun spontaneous woman is a thing of the past but a very fond memory.
I lost what should have been my free years, having grown children, traveling, exploring, lunch dates with friends, being a grandma, drinking wine on the beach. The last ten years weren’t what I planned. Gradually, my whole family got sick and I had to change everything I had organized for my future to care for them. I had to abandon what I thought my world should be and who I was and learn to accept who I am today.
My New Normal
No longer are the days that I can jump up and run to the store, take a hike or meet the girls. Every step of my day has to be calculated with everyone else’s needs. Zac can’t just be left in his wheelchair or in bed. I never know what shape my husband or younger son are going to be in. Is my youngest son having a manic episode, or is my husband in severe pain and can’t get out of his chair. My day has to adjust based on everyone else and what they might need.
Letting Go of What I Use to Be
I have never felt resentment, I just do what I do. I love my family and when your family needs you, you just do what has to be done. But it has been a big adjustment. I had to let go of so many things in my life to care for everyone. But I have learned and adjusted to my new normal. I haven’t given up on my dreams, just had to rearrange and prioritize them right now.
My life is filled with love. I start each day in the quiet by myself and all of our 18 rescue hairy kids. They lay around me as I work on my articles, catch up on social media and I find peace in their soft snores and snuggles.
Social Media Can Be a Life Preserve to a Full-Time Caregiver
As a full-time caregiver you often lose connection with the outside world. Your only connections are doctors appointments, trips to the grocery store and the occasional visitor.
Social media allows you to join support groups, learn information, engage with other people and form actual friendships. The people you meet on social media are people and families having the same struggles, life problems and occasional victories as you.
My Family Is Amazing
My sister checks in everyday and has been my hero through the last ten years. She is strong and beautiful and I guess I kind of live vicariously through her as she does some of the things I use to love to do. But she has always been there for me emotionally, physically and even financially at times. It is hard to ask for help, with her I don’t have to, she just knows when I need her.
I have also been blessed with two new brothers. They call me daily to check on the crazy house. They come to visit and help contribute financially to the pet rescue. It’s odd having two new brothers in their 60’s. It has been surprising how comfortable we are with each other. Less than a year ago we didn’t even know the other existed but they have stepped up and really helped their little sister, (that is me).
And then there is my incredible mom. She can’t physically help anymore but she has been the rock, the foundation of everything I hold dear. It is because of her and the values she instilled in me and the example she set that gets me through each and everyday.
I Am Grateful
So for all these things, I am grateful. I have learned to find joy in old animals, writing my stories about life or about animals on my other site, www.fureverhaus.org.
Writing is a form of therapy and self expression for me. I have learned to find joy in the accomplishments of my family, the goals we have set for ourselves and each other. Finding joy in my old brick house that is surrounded by beautiful trees and love has brought me comfort.
I find joy in the little things like dancing around the house, singing old 80’s tunes with Zac, baking, doing art, quiet alone time and playing with the old dogs and cats that live here.
Who Am I Today
I am me. I am still happy, I am a mom, a caregiver, a wife, an adventurer, a dreamer, a writer, a daughter, a blogger, an animal rescuer, a sister, a friend, and a damn good person. When defining myself, it always makes me think of the expression, “not my monkeys, not my circus”. For me, these are my monkeys and this is my circus, and I am the ring leader. And through it all I find Joy.
The Moral To My Story
Don’t let who you thought you were, prevent you from becoming who you are.
Life is messy and if we let the obstacles that come with life define us then we miss out on new victories, challenges and things that can make us so much better! Embrace the challenges and find ways of channeling them to benefit you. You can become a better you, a new you the person you never thought you would be.
You’ve got this, just like I do!
Prayers for you and your family. Especially when some days are really long and weeks run together may you find peace and feel the calm.
Thank You.
You are an amazing mom, wife, daughter, sister, caretaker, animal-lover and friend!! I just wish I could help all of you… I love you tons!!
I am so blessed to have you in my life. I just can’t imagine my life without you. You keep me sane in this upside down world. Love you to the moon and back!
Many times life doesn’t turn out how you plan it to be. Kudos to you for taking charge and doing your best with the hand you are delt.
Thank you Heather. Life is pretty precious and can change so fast. Thanks for you for taking the time to read and reply, it means a lot to me.
Thanks for writing this! I have started a blog, too, and am finding that writing about all the changes I am faced with helps a lot. I admire your strength and courage in dealing with such long term adversity. I am responsible for my sister with developmental disabilities, as well as my mom, who has dementia. I must admit, I sometimes feel discouraged and even resentful, though I’m not proud of that fact. My mom and I were never close, so I don’t have the memories of the good times or even of helping each other through the hard times to carry me.
It is a tough road and I admire your for doing it, it must admit that even though my mom and I were very close it is still very hard. I can’t imagine how hard it would be without that relationship. Kudo’s to you! I wish you the best and hope that you do get some time for you. A blog does help for sure! Send me your link, we can keep track of each other!
Kim as I sit on a plane tears fill my eyes because when I think about growing up with you and Kari I remember how you always were so full of life and you had that special spark that lit up a room. You still have that special zest and you share it with your family as you care for them. What a beautiful gift you are giving them. To me you are a hero, a super woman and I will always admire you just like I did as a kid.
Shayne, Thank you so much. This is the first time I have opened my computer since we lost Nash. It has been a long and horrible month and the fog is thick. Living without your children is unbearable. Losing Zac – has been devastating as he will never be the man he was suppose to be because of the illness that took his brain and body, but adding the horrific loss of Nash’s life has broken me. Realizing I will never be a grandma, and all the plans that Nash and I had are now just gone in the blink of an eye. I so appreciate your super kind words and love seeing you and your family on facebook. Great big hugs to that little nerd I use to shuttle around. You guys always bring a smile to my face even today. Love you.
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