Uniquely Different

February 28, 2012

Today I have the pleasure of sharing with you the last guest post of the month.  This comes from Erin, mom to twin girls with Turner Syndrome!  Aubrey and Ainsley were featured in the Our Beautiful Butterflies post earlier this month.

Uniquely Different

Hi everyone, thank you for taking the time to read this guest post, and thank you Sarah for hosting me.

My name is Erin and I am the mother of four beautiful daughters. Yes, yes, I know… four proms, four college educations, four weddings, and four hormonal teenage years. People always love to remind us of these perks. Despite all of that (lol), we consider ourselves truly blessed to have them all. In my heart they are all miracles, but statistically speaking the twins even more so. You see, they both have Turner Syndrome, and 98% of TS girls are spontaneously aborted during the first trimester, so the fact that they are two of the 2% that survive is definitely miraculous.

Our two happen to be mosaic TS, meaning that some of their cells are XX and some are XO. We laugh and say this is what makes them the least identical identical twins we’ve ever seen.

Now sixteen months ago I had no idea what TS even was, I, like many of you I'm sure, had never even heard of it. The babies were not diagnosed while I was pregnant, and I had no idea that one of them, Aubrey, had any congenital heart defects. The doctors were concerned because one of them was growing very slowly, and thought that there may be some twin-to-twin transference going on. I was induced at 36 weeks, and Ainsley and Aubrey came into this world kicking and screaming like any other babies. My husband swept them up, and he, some nurses, and a pediatrician went off to get all the weights and measurements taken and get their first exam done. I was on cloud nine! I couldn't wait to get cleaned up so I could get those babies back into my arms.

I'm sitting there alone, just glowing knowing that our wait was finally over, and a nurse comes rushing into my room and blurts out "Did you hear about your baby?" At that I was ready to launch out of the bed and take care of business, it took all I had to ask her what was going on. She looked at me and said that my daughter was a dwarf. I sat there stunned for a few seconds and I just couldn’t wrap my head around how she said it, your daughter, singular not plural. I told her that I was confused, how could only one of my daughters be a dwarf, they are identical twins. She said, “Well I don’t know, but baby B has Turner Syndrome.” Huh??? I knew what dwarfism was, but I had never heard it called TS. I think the nurse realized that at this point she had overstepped some lines and left the room.

Now I was alone again reeling with this news and not sure how to process it. I’d like to say that I was immediately strong, but that would be a lie. I was scared, sad, and confused. My best friend came in shortly after the nurse had left, to show me pictures that she had gotten. Being my best friend though she immediately knew something was up and I said Aubrey has TS, she is a dwarf. She was at my side in a second telling me everything would be fine, that I was a strong mother, that we were a family of strong women and would raise her to be a strong little girl. That we would teach her to love herself for who she is, because she is perfect no matter her size. THAT is one of the many reasons why she is my best friend; she had the courage to be strong when I was weak. She was absolutely right too, unlike that nurse, who didn’t know what the heck she was talking about. Turner Syndrome and dwarfism are not the same thing. Yes, TS girls are typically short statured, but that is about it for the similarities.

I was educated pretty quickly by the pediatrician and realized just how unaware that nurse had been, sorry to say I didn’t see her again during the rest of our stay. I just wanted to tell her that a little education goes a long way, and that if you are unsure of something, if you don’t know for 100% that you have your facts straight then it is best to just keep quiet and defer to the doctor.

My husband and I also quickly began our own research, neither of us likes being caught uneducated especially when it comes to things about our children. My husband found and printed a copy of the clinical guidelines for TS and it has been a great reference for us, so that we know when to ask for referrals and it keeps all of us on top of things that may have otherwise gone unnoticed. It is how we were able to get an echocardiogram the very next day instead of waiting the few months like the pediatrician suggested.  

Needless to say life has been a whirlwind since their birth, and got even crazier after they diagnosed her sister Ainsley with TS as well. Having more than one child with TS in a family doesn’t usually occur, but while rare, in the case of identical twins it can. We have lots of doctor appointments; in fact at last count they have 14 different doctors, therapist, and specialists. For quite some time we had appointments 2 and 3 times a week, even now we still do home therapy weekly. Thanks to the help of our amazing family and friends I have been able to remain home with the girls and keep things running smoothly. I know it sounds like a lot, but for every family with TS it is different. That is why it is so important to take the time and get educated and aware about TS. This happens to be our normal, and as with life, I’m sure it will be continuously changing, but trust me, it is all so worth it, these girls are amazing and our lives are so much richer with them in it. Having a positive attitude and remembering that everyone has a different norm is key for us.

Life with TS isn’t all about doctors, therapies, having tests, weights, and measures. For us it is playing at the park, exploring every leaf when we take a walk, its dancing to the Wiggles and singing along to Old MacDonald. It’s building towers out of blocks and marching in a pots and pans band. It is learning new words and signs. It is splashing in the tub, reading countless books, and playing peek-a-boo. Its big blue eyes, pink glasses, and curly pig tails. Its giggles, grins, hugs, kisses, and lots of I love you’s. It is our hearts rolled into beautiful packages.

Ainsley and Aubrey are smart, funny, loving, energetic, wonderful little tinkerbugs. They are full of life and are happy. They will be educated about Turner Syndrome in due course, they will be taught to promote awareness. They will know that they can go on to do anything they want, just like their older sisters learned. They will also know that nothing can define you unless you let it, that they may have Turner Syndrome, but that Turner Syndrome does not have them.

My girls, all of them, are amazing and unique. I hope someday the world sees that Turner Syndrome girls and special needs kids in general, are all uniquely different, just like everyone else. 

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  1. I haven't commented on any of the guest posts, but they have all been so great to read!! Thanks for sharing all of them with us!

  2. Great article Erin! I love you attitude and all of your girls are very luck to have you (and your husband) as parents! Thank you for sharing!

  3. They truly are an amazing family and I love them all so much! Erin, I am so glad you shared your story.

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