Monthly Archives: December 2016

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Lessons from Gram

Over the past several years I’ve made it a point to regularly send my Gram a card.  Every few weeks usually, but sometimes more sporadic.  As dementia slowly took hold, I knew that she we wouldn’t be capable of responding, but I wanted her to have cards and letters to read (and re-read).  While technology is “nifty” and digital pictures can be shared, having a card in your hands to read was the best gift I could give her.  I met a darling woman at a craft show who handmade lovely cards, and I made it a point to stock up on them every time I saw her.  She knew I bought them to send to my grandmother, and we shared many a hug as I picked them out and gave her an update.

My cards and short notes usually talk about the weather, the garden, the flowers blooming, the depth of the snow, or the height of the grass in the fields.  I would share about a special lunch with a friend, or a quick trip to the big city for errands.  Things that might be small and seemingly insignificant in my fast paced world, could be a glimpse at my life for her.  So I shared as often as I could.  I was always glad when I could tell her that I would see her in a few weeks, or when I could thank her for her hospitality and a great visit. As much as the cards were a newsy update in a format Gram would appreciate, they were also an opportunity for me to recount my blessings, and take pleasure in the smallest things in life, and the gifts and influence she has had on my life.

My Gram was 93 years old, and has been in hospice care since August of this year.  The past couple of years her health has declined and it was time to make the shift.  A couple of weeks back, Gram tumbled out of bed in the early morning hours and banged up her leg.  As these things go, that started the ball rolling as it were – a blood clot, bed rest, transition to a skilled nursing facility, and ultimately her passing from this life.

As you can imagine, I’ve been replaying scenes of my life the past few days, and thinking about the remarkable woman I call Gram, and her influence in my life.  Things I’ve shared with her, and things I haven’t.  Funny memories and life lessons.

She taught me to be frugal and thrifty – rinse and recycle tin cans, rinse and reuse plastic zip-lock bags, neatly fold and store grocery bags – both plastic and paper.  Dilute your shampoo by at least a third to make it last longer, and make and use compost for your garden.

She taught me to appreciate nature and the beauty around us – on hikes, in her garden, and while camping.  By putting food out for the birds, you get to enjoy their presence and beauty and song.  If you walk quietly and listen carefully you will see the birds, the fish, the chipmunks, and if you are really lucky the deer and even a bear or two!

She taught me to wish upon a star, a birthday candle, and a dandelion puff.  Dry the prettiest flowers between the pages of a book, and pick up the pretty glass on the beach.  We also had to pick up all the trash on the beach and the hiking trails and carry it out with us – to make it nice for the next people.

She taught me to love music and books, and that tea in special tea cups always tastes better.  When the table is set with beautiful linens, candles, special china, crystal, and silver – the meal tastes so much better…even take-out pizza! (oh yes we did!)

She was a nurse, and she inspired me to do a job I loved that had meaning, and not worry so much about the size of my paycheck.  As a nurse she also taught me that a jar full of cinnamon red hots could cure anything that ailed me.

She was also a woman of strong Faith.  As a child when I would stay the weekend with her, she would take me to Sunday School on Sunday mornings.  I didn’t know the kids there, but we learned about the bible and the stories within.  There was a big bible in the hallway in her home, and if I was very careful (and she supervised) I could turn the fragile pages gently and she would read a few verses for me.  When I was a young woman, there were many a Sunday when we attended church services together, and she helped to arrange for the pastor for my first wedding.  In times of struggle and challenge in my life I’ve found myself thinking about how my Gram may handle it, and how her example of strong Faith has guided me.  I have wished over the past few months that I could have an opportunity for a true conversation with her about my own Faith journey, and the path I’m on right now – but knowing that while her heart would understand, her mind might not let her participate in the conversation. So instead I prayed and asked God to share with her as only he can.  I have a picture in my head of God telling her about my upcoming baptism, and her rejoicing with silent tears and pure joy and love in her heart.  I hope she’ll tell me about it someday.

She was such a classic and classy woman – full of joy, grace, love, humor, and spirit.  Gracious, humble, and kind.  Trusting, loving, caring, and forgiving.  She was a beautiful woman through and through.  I am truly blessed to have her as an example of a woman I aspire to be.

As I both celebrate and grieve her passing, I share the following verses that I feel capture my beautiful Gram perfectly, and the lessons she has taught me.

 “It is not fancy hair, gold jewelry, or fine clothes that should make you beautiful. No, your beauty should come from inside you –the beauty of a gentle and quiet spirit. That beauty will never disappear and it is worth very much to God.”  1 Peter 3:3-4

“She opens her mouth with wisdom, and the teaching of kindness is on her tongue.” Proverbs 31:26

“She is clothed with strength and dignity, and she laughs without fear of the future.” Proverbs 31:25

“You are beautiful for you are fearfully and wonderfully made.” Psalm 139:14

 

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Stages

In the MRKH community, we talk a lot about stages.  Not stand up on a stage and perform to an audience type of stages, but stages of acceptance, grief, treatment, development, healing, etc.  We also talk a lot about our journey as it relates to these stages.

From a purely physical perspective, MRKH affects us all a little differently.  It’s a genetics thing, and while Amy could explain all the science behind it, just know that every attribute about us as a human is controlled by our genetic makeup, and when there are little bumps in the road, different things happen.  We didn’t get MRKH because of something our mothers did or consumed, it’s not recognized as a side effect of some medication, and there aren’t any definitive environmental links either; it is simply that at a particular moment in development of the embryo, a specific gene didn’t get the message it was supposed to create a cervix, or uterus, or vaginal canal.  Generally speaking, women diagnosed with MRKH have an incomplete reproductive system – the organs just don’t form correctly or are missing entirely.  Often, there are also related complications with the renal system (kidneys), skeletal/spine issues, and other things.  In my case, I have both ovaries, fallopian tubes, and some uterine tissue – but the news never made it to the correct gene to fuse those tissues together for a functional uterus, create a cervix, and make my vaginal canal of typical length.  Apparently, my kidneys got a corrupted message too – my right one decided to just stay and hang out in my pelvis, since I wasn’t going to get a uterus in there.  I did however get a bit of a head start on the vaginal canal – a whole centimeter of depth!  As it turns out, that was quite handy for me in the “treatment” stage.

Again, because we all have MRKH a little differently, our treatment for the physical anomalies varies as well.  It even varies greatly by country and culture.  I’m in the USA, so I’ll just speak about options here – but if you are in other parts of the world, sometimes you have very different approaches to treatment.  Additionally, because medical biotechnology advances constantly, what treatments are widely used will vary as well from generation to generation.  I was diagnosed at 18 years old, and it was 1989.  It was a time of many advancements in medicine, with procedures changing as technology advanced.  It was also during a time when “test tube babies” and treatments for infertility were getting some news time.  But I was 18 and my primary concern was “how do I stretch out the vagina so I can have a more or less normal sexual relationship?”.  Well, my doctor said that because I already had a start at some vaginal depth, it would be pretty easy to stretch it out.  I could use plastic molds to do this, or I could just attempt sexual intercourse with a gentle and patient partner and stretch naturally.  I had a fiancé, I had a trip planned after I graduated high school, and you know, I was planning to lose my virginity…so…I went with the stretch naturally method.  It was much less embarrassing to me, and as it turned out – worked just fine to get me “custom fit” for my fiancé.  Other women in the USA chose to have a vagina created surgically.  There are several procedures offered to created, and generationally and regionally they vary.  McIndoe, Vechetti, and Davydov seem to be the most popular surgical options.  I really haven’t had or needed any other treatment for MRKH.  I get regular medical care and gynecological exams, and since I still enjoy an active sex life, my vaginal depth has been maintained.  I did go to a fertility clinic at one point to discuss options of IVF and surrogacy, but again, it was in the early 1990s, and not all the states had the same laws about it, and it was not generally covered by insurance, and with the estimation of costs – the option to pursue it was taken off the table pretty quickly.

So those are the physical stages of diagnosis and treatment for me.  I found out I had MRKH, I created a vagina, I couldn’t afford to pursue IVF and surrogacy, so my treatment was basically complete.  Clean and simple, right?

But the emotional side of things has a habit of sneaking in every now and then and shaking things up…again!  So I’m sure you’ve seen the 5 stages on the road to acceptance before:  Denial.  Anger.  Bargaining.  Depression. Acceptance.  Maybe you’ve even been able to apply them to areas in your own life.  But looking through the lens of MRKH and our lifelong journey, it is not just one loss or trauma we are dealing with, but many that are intertwined.  The trauma of diagnosis; the reality of infertility; the shame in being “not normal”; the sheer nature of creating a vagina – through dilation or surgery; the grieving for children you will never have; the effect infertility has on relationships; and I’m sure the list will continue to grow.  Many times I feel like I do the 2 steps forward, and 1 step back thing.  Different things set me off, and different things have bothered me over the years.  I’m well past the denial stage, and most often I sit at the acceptance end of the stages…but then I see a meth head youngster who is pregnant and destroying the child growing inside her – and I get MAD.  Or I see a beautiful and healthy young mother who is pregnant with her 7th beautiful healthy child (yeah…this is a true story), and I get a little depressed – happy for her, but yearning for the ease of pregnancy and wondering if she’s ever had a miscarriage and could maybe understand the struggle of an infertile woman.  I don’t usually linger in these thoughts for long…but they do come up from time to time and catch me off guard.  I try and get firmly back into the acceptance stage – because it’s here where I can be the best me!

When I am in the acceptance stage, I am strong and positive.  I’ve learned from my experiences, and I’ve healed…just a little bit more each time.  I can spend my energy doing what I can to make a difference.  To mentor.  To guide.  I can talk to a young woman considering treatment options, and give her the best advice I have.  I can be happy for the healthy pregnant mom of 7.  I can enjoy the adorable pictures of miracle surrogacy babies.  I can be strong and encouraging for my MRKH sisters around the world.  I can work hard and help to raise awareness and reduce the shame of having been born with MRKH.  I can talk about not having a uterus and having to “make my own” vagina to random strangers.  And I know that I am strong enough to not let MRKH dictate my life, and to get my butt back to acceptance as quickly as possible.   The more actively I work to promote MRKH, the more healing I do not only for myself, but as an example for all my warrior sisters!

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Beautiful Women

I’ve had some great conversations with some wonderful women over the past few days – weeks even.  It’s really making me treasure the special bond I have with so many incredible women.  I’m not sure I ever truly appreciated it until I really started reaching out to other women with MRKH.  The sisterhood within MRKH is a powerful thing.  I never had a sister growing up, so finding thousands of them as an adult has filled my heart to bursting.  I find that same beautiful bond with my sisters in Faith, and again it wasn’t something I appreciated until I made the point to reach out to them.

Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.  Matthew 7:7

These are just some of the incredible women in my life, and why they mean so much to me.

My Gram…gracious, loving, forgiving, funny, and fun.  She is in the final stage of her life, she’s 93 and is fading fast in hospice care.  She set a fine example of being a wonderful human, a hard working nurse, wife, mother, and grandmother.  She has instilled a sense of peace and faithfulness in me, and her Faith inspires me deeply.

My Auntie, who is giving such tender care to my Gram.  Her independence and strength, her determination and forgiveness.  She has taught me to question and to remain curious; to stand for what I believe in.

My Mom, she taught me hard work, responsibility, and sustainability.  I’ve learned to be independent and self sufficient, to work hard for what I believe in, to not hold grudges, and to forgive with every ounce of my soul.

My BFF, Eileen.  She has been there through thick and thin, through sorrow and celebration.  We have laughed until milk came out our noses and we peed our pants just a little – and we have spent hours in tears as we each battle our own personal demons.  We have prayed, and questioned, and rejoiced.  She is everything to me -a best friend, a sister, a confidant, and of course – a tattoo-twin.  She teaches me compassion, humor, humility, and that hard work and hard lessons often go hand in hand.

Janine has been a fixture in my life since high school.  She was there the day I had my diagnostic laparoscopy and it was confirmed that I would never carry a child.  She inspires me with her Faith in God, her love of family, and the love she has given to her adopted children.  She has taught me that every challenge has a purpose, that prayer absolutely works, and that if you just take life one day at a time, it’s much easier to recognize and count your blessings.

Karen – the big sister I never had until the day we met.  She has a giant heart, a wicked sense of humor, and inspires deep conversations at the drop of a hat.  She has taught me resilience, trust, and forgiveness.  When I was finally ready to reach out and follow my Faith path with purpose, I called her first…knowing she would talk straight and would understand all the subtleties of my journey.  Our support is a two way street, when she has a problem she needs to talk through, she calls me – and I do the same thing.  We talk girl stuff: make up brands, shoes, and eyebrows – we talk wife stuff: husbands, houses, and laundry – and we talk relationships: mothers/daughters, friends, and God.  We laugh, we cry, we pray.  She keeps it all real in my life.

Chel – the best friend I haven’t met yet.  Chel and I met online in a south beach diet support group and we just clicked.  We are about the same age, height, weight, etc.  We’ve both spent time in the military, and over the years we’ve just bonded more and more.  We text almost daily, and when there is more to say we email.  We’ve actually spoken on the phone a couple of times – but usually  it’s just texts.  She keeps me accountable and honest with myself.  She encourages me to make healthy choices, both physically and emotionally.  She gives me honest feedback and offers a perspective from outside my own little bubble.  When I finally make my way to Michigan, we WILL finally meet face to face and I imagine there will be zero awkwardness and a long anticipated hug and cup of coffee!

There are a whole long list of international MRKH sisters that I treasure.  While most of these sisters I’ll never have a chance to meet in person, we talk regularly through social media and messaging apps.  Deepika of course, my beautiful Indian sister.  She shares recipes with me, wishes me a good morning, reminds me to eat my breakfast, and shares the joys of raising her step-son with me. I am the designated auntie and get to talk to them both on the phone occasionally. My beautiful Faria who is so smart and courageous, doing her part to make a difference in Bangladesh.  Laura, Claire, Aysha, and Hasna in London/UK.  I exchange letters and message them routinely.  Melissa and Kelly in the Netherlands.  Lise, Ally, Bianca, Elaine, Christine, Nicola, Karina, and so many other sisters scattered all over the world, and all of them working to make a difference for women with MRKH.  It’s a beautiful thing to see.

Stateside MRKH sisters too, Amy, Christina, Kristen, Lacy, Brittany, Lindsay, Jessica, Chrissy, Allison, Hailee, Kimmie, Tina, Jaclyn, McKenzie, Krystina, Denise, Dawn, Sara, Patricia, Kay, Kayla, Jen, Danielle, Alyssa, and Lindsie.  So many beautiful, strong, courageous women.  All speaking out in one way or another, all making a difference in the lives of women with MRKH.  And all willing to stop for a moment and chat when you need to.  The outpouring of unconditional love is quite literally staggering – and that fact that each and every one of them “gets it” when you say whatever is weighing heavy on your heart….wow.

Giant hugs and thank yous to a few very special sisters who have taken some time recently to help me with perspective and direction…sharing their hearts, their beliefs, and their love.

Brittany, you my darling girl gave me such peace when we spoke.  Sharing your knowledge and own journey with me helped immensely.  I’ve told you many times that I feel a very strong pull and connection with you…someday soon we’ll have the chance to meet in person, share a much anticipated hug and snuggle doggies together!  I love you, girl…thank you for everything! <3

Patricia, I don’t even know how to thank you…where to start.  Your wisdom and your Faith have been incomparable.  I’ve enjoyed every conversation with you, but when we connected recently when I was more or less in crisis…your love came through bright and strong.  Your wisdom, empathy, compassion, LOVE, FAITH, reassurance…you lit my path and confirmed what my heart already knew.  You inspire me, you guide me, and the gifts you add to my life are immeasurable.  After our talk and prayer session, I left feeling more joy and peace than I had in many months.  Thank you for lighting my path, and walking along side me as I stumbled.  I thank God daily for putting you in my life.

I am lucky enough each Sunday to share worship and prayer with more incredible women from our small congregation.  We are led by Pastor Erica, a beautiful and humble young pastor.  I enjoy her sense of humor, and her honest and direct way of just putting it all out there without sugar coating it.  I’ve had many deep spiritual conversations with her of course, but I also treasure the casual conversations fostering a love of community and “girl time”. Karen of course attends and holds my hand when I need it – and passes me the kleenex.  Lisa who encourages in her quiet and steady way, and has become a dear friend in just a few months.  Good food and a good dog might play into that a bit, as well as a fabulous sense of humor.  Sally and Diane, Beth and Rita – all strong and faith filled women who all make a difference in my life, even if they don’t know it.  Watching all of you, being surrounded by your unconditional love and support is a treasure and an inspiration to be and do more in my own life.

As I look around, physically and metaphorically, I find myself surrounded by women who are bold and strong, faith filled and compassionate, kind and courageous.  I learn so much from each of you, and am truly blessed by each of your presences in my life.

The past few months I’ve been making a great effort to walk a Faith filled path to enrich my own life, but also to foster my relationship with God.  Along this path I am continually visited by incredible women who nudge me this way and that, shining a light when I need it, holding my hand to guide me, handing me bushels of tissues when I need them, and inspiring me to be the best ME I can be.  I am truly blessed.

Be strong. Be Brave. Be fearless. You are never alone.— Joshua 1:9

Blessed is she who believed that the Lord would fulfill His promises to her.— Luke 1:45