A Butterfly or a Grizzly Bear?

February 15, 2012

I have the pleasure of sharing another guest post with you today from Kirsten, whose daughter Sienna is featured in my beautiful butterflies post, and who shared with us last week her struggle with the infertility aspect of Turner Syndrome.  I am so thankful for Kirsten sharing her feelings with us, and giving me a little break from writing for a few days.

A Butterfly or a Grizzly Bear?

It is February 2012, Turner Syndrome Awareness month - the shortest month of the year to celebrate our short little princesses. Doctors told us Sienna would be 4’6” to 4’8” without growth hormones and closer to 4’11 or maybe 5’ with them. I want her as tall as possible.  Maybe I am more of a realist or people may say down to earth, but I LOVE the TSSUS slogan of “Short Happens!"  Short stature is a common diagnosis and the most common trait of TS for most girls or women.  And since TS has no real cause – it is nothing either parent did or contributed to – it just happens. I like to think sometimes our eggs and sperm follow the recipe and sometimes they get it wrong. So short really does just happen.

And the TSSUS symbol for TS is a butterfly. As Sarah writes in her blog:

“The butterfly is the Turner Syndrome symbol.  The TSSUS chose the butterfly because the butterfly is feminine yet strong, every butterfly is unique, and butterflies fly on their own which is our hope for our girls.  I think it fits so well because butterflies may at first glance appear fragile, but are truly strong and beautiful, just like these girls!”

I like the butterfly and I do get this meaning.  It is positive and supportive.  It is hopeful.

I would be lying though if I also said I liked it all the time. When I really think about this in my life, as it pertains to my butterfly, I think I get defensive. And this is weird – because I am usually the person who gets all this stuff and is OK with it or does not think about it.  But those times it usually does not pertain to me or I get the joke.  And here is why I can say it bugs me.  And it could bug other moms who are like me.

Up until around May or June 2011 I was raising a perfectly normal and healthy child. She was healthy and active and learning and smart and full of life, love and attitude. The attitude part really makes Grandma happy for some reason…but we will not talk about that here.  She was much shorter than her peers but every bit as smart, normal, active and happy as everyone else. Then we did a blood test and found out she has Mosaic Turner Syndrome. Some percent of her cells only contain one X chromosome, and some contain two X chromosomes but one is apparently broken. Of all the things that can go wrong or are more likely found in a TS girl – she has relatively few. She has no heart defects, and no outwardly physical symptoms one would recognize as TS. She does have a horseshoe kidney, she does wear glasses, and she has tubes in her ears (2x times now) because of recurring infections and fluid in her ears that impacts her hearing if left unchecked. That is pretty much the entire list.

Now I have a daughter with TS. OK. Nothing has really changed for me except we now give her a growth hormone shot every day and we have to have a few more doctors appointments every year. She is still the same girl and still so full of life.  I feel sometimes this verbiage around this butterfly symbol is saying there is something defective or substandard about our girls.  I have heard other mothers say they know their daughter will endure the laughter from other children and people as if they are assuming their TS butterfly is already imperfect. To me, there is a sense of faultiness implied here mixed within the support and hope.

Maybe it’s how I trust doctors and go to them to fix the things that needed fixing, and have from a young age.   Maybe it’s the 15 surgeries I have had in the last 14 years and still consider myself healthy. Maybe it’s the fact nothing a doctor could do to me anymore scares or worries me in the least.  Maybe it’s is my overall personality about this stuff.  It is just a procedure and I know why it’s needed and I do not get overly emotional seeing my baby scared or poked.  Sure, you might be thinking it, but I am not heartless.  I do not like to see her scared and unsure, but I stay calm and we handle it. And I think I am passing this attitude to my child. She was not thrilled about shots as a baby / toddler getting her vaccinations. She is unsure of new doctor appointments and procedures. She was not particularly thrilled the night the nurse came over to teach us how to administer the GH shots and had to get the first one. She is 5.  I get it. But after the first shot - it really has been painless. Her dad and I treat this as putting on your jammies or brushing your teeth, and we do not waver in this.  If anything, we use humor to make it just another thing.

Maybe it’s my defiant attitude – and most people I know would verify this for you - adamantly. I am a fighter, persistent, and most of the time “you can’t” or “no” is just a dare to me. TS is not who she is or what she is. It is something she has. And will always have, but in my mind it does not stop her from doing anything, ever. It does not limit her in any way – except maybe reaching the top shelf without a step stool.  I do not feel I am in denial in any way as well, as I do not neglect any appointment, recommendation or treatment.  I keep an open mind to things that could go wrong and I watch for them. I pay attention to her moods, her feelings, and her behaviors. I am very observant and mindful of what is “wrong” with her and the things that could still appear.

But some days I feel I am raising a grizzly bear, not a butterfly. There is nothing neither delicate nor fragile about her. She is decisive, active, and curious. She is a tough little cookie. She has no problem standing up to me, even when I remind her who the mom is and that we do not talk to each other that way. She has no problem getting what she wants or letting others know she is there. There is nothing in my mind about hoping she will fly on her own – she would do just fine if she moved out today! She is resourceful, smart, adamant, and independent.  She is the same little girl I had before May 2011.

Please don’t get me wrong. I know TS girls come in all varieties and all with unique and different conditions or symptoms.  I would never discredit or make light of the struggles others go through and what they had to deal with.  Some TS girls can have very serious issues and this is devastating to a family.  At the very least, it is hard on any family.  There are things which go wrong that do cause tough emotions to surface and difficulties for the girls.  We all have different lives, thoughts, abilities and concerns.  For me, the days it pops into my head that only 1-2% of babies conceived with TS actually make it to a live birth and if there are not 15 other things on my mind when, it can stop me in my tracks.  My little grizzly bear is a miracle.  She is here despite the odds.

I also know I am lucky and she is lucky.  I can see the other difficult issues many parents, especially the ones who knew before their daughter was born, had to endure.  These people are strong. They are survivors.  So are their butterflies. I am not bragging nor refuting the TS world with this post.  I am saying for me, there is nothing fragile or need for more hope in my life.  There is no doubt in my mind my little girl will grow up just fine.  I feel this makes us stronger and better able to deal with all the things that are going to happen in our lives that are not good.  This is something that makes her unique, and will help her see the differences in others. This is one more step on the journey we call life.  Whether she is a grizzly bear or just a cute little butterfly, she is still my daughter, the love of my life, and she will grow up as a good person if I have anything to do with it.  Now, we just have another purpose, to share with and help the rest of the world see TS as normal, acceptable, and not the end of the world. 

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  1. Oh praise God. I thought I was the only other mom in the world who felt, reacted, and dealt with this the way you do! Thank you so much for sharing your story. I too have a grizzly bear most days, and sometimes, I too am bothered by the butterfly symbol because my little one is anything BUT fragile!


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