So I’ve been giving this a lot of thought lately. Soul searching you might say. Do I want to blog? What will I talk about? Will it help? Am I a good enough writer? Do people want to hear what I have to say? Should I?
And I came up with: Yes, I think so. Probably everything. I hope so. Probably – but that depends on how critical the reader is. Maybe. Oh…well…yes…let’s do it.
So let’s cover the basics, shall we? My name is Heidi. I’m 45 and have been married for 21 years and counting. We live in Idaho on a small farm. I love animals – dogs, cats, and goats mostly…but baby anything and I’m suckered right in. I’m a wife, a daughter, a sister, an aunt, a cousin, a friend, and an MRKH Warrior.
Yes, that’s right…MRKH. Mayer Rokitansky Kuster Hauser syndrome. I was diagnosed at 18 years old. On that day I was told that I was born with a very rare condition and that I was missing a uterus, cervix, and the upper 2/3rds of my vaginal canal. It’s a birth defect that no one can see just by looking at me. On that day, my world quietly shattered. My hopes, my dreams, my plans – all shattered. Who was I? What was I? What did this mean for my future? I didn’t have answers, and I didn’t know what the future would look like. I just kept going. I got up in the morning, I went to school, I did what I had to do and my life continued day by day.
As I look back on my life, the things I did and didn’t do…the choices I made…the mistakes I made…through it all I see a young woman who learned to be Courageous.
MRKH affects 1 in 4500 women world wide with no mind to race, ethnicity, or socio-economic standing. Young teens enter into puberty right on schedule, but they do not start their menstrual period – this is generally the first sign that anything is amiss. A quick trip to the family doctor, and then usually a gynecologist….from there experiences vary….until the young woman is diagnosed with MRKH. Over the last few years, many courageous women have come forward to join forces and spread awareness about our syndrome around the world. Support groups have been formed, and real action has been taken to support those diagnosed with MRKH of all ages.
For over 25 years, I felt completely alone in my diagnosis – the rarest of rare. I had to explain to every doctor who ever treated me – no, I’ve never had a period, I was born without a uterus – they call it MRKH. I never dreamed of meeting another woman who had the same thing as me – someone who might share my same feelings, hopes, fears and disappointments. Not only did I find thousands of women who understood me – but I found that by sharing my own experiences I could give hope and encouragement to young women who are struggling with their own diagnosis and shattered dreams.
It was empowering – sharing my story, offering love and support to these women. And finding more and more women that I could relate to and ask my own questions. MRKH has been around forever – it’s in every generation, but it’s only now that talking openly about it is accepted. The internet is great for breaking down barriers and allowing open and safe dialogue across all geographical lines. I wanted to do more…and more still! But what could I do? How could I make the most difference? Have a lasting impact? How could I celebrate my own journey, while encouraging others to do the same? What talents could I bring to the table?
It was in this mindset that I found inspiration in the work of the Beautiful You MRKH Foundation. I spoke with the founders, Amy and Christina, and asked if they would be interested in a partnership of sorts. I wanted to create a signature line of bath and body products to celebrate women with MRKH, and with every purchase, a donation would be made to their foundation. We quickly came to an agreement and created the Courageous Project.
Courageous is all I hoped for and more. MRKH sisters from around the world have eagerly supported the project. They are proud to have something designed with them in mind, and something they can share with the people who support them. What I didn’t expect was the impact on my own journey – the love, encouragement, and healing that I feel with every life I can touch. And the opportunity to spread awareness about MRKH. I’ve never hidden from my diagnosis – but I now talk very openly and honestly with anyone who will lend an ear.
My primary focus is on supporting, encouraging, and empowering women with MRKH and their families, but in working towards that goal I find my own bit of peace, hope, and healing in my own journey. We aren’t diagnosed, treated, and cured – we have lived with MRKH from the day we were born, and we will continue to have our lives impacted in small ways until the day we leave this earth. So learning to be Courageous is a survival mechanism – at least for me. A few of my favorite quotes:
Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen—Winston Churchill
One isn’t necessarily born with courage, but one is born with potential. Without courage, we cannot practice any other virtue with consistency. We can’t be kind, true, merciful, generous, or honest. —Maya Angelou
He who is not courageous enough to take risks will accomplish nothing in life. —Muhammad Ali
Courage is the price that life exacts for granting peace. —Amelia Earhart