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Do Not Label Me

I was 36, and thought my child bearing days were over. I had endometriosis and had not had the easiest pregnancies or births previously (but not hopelessly horrible either). So, when I started feeling tired and nauseous all the time, combined with bloating, I went to the gynecologist.

I didn’t have the usual signs of pregnancy, so that didn’t really cross my mind. The doctor ordered a pregnancy test in the office, and it was negative. He did, however, say there was a growth and ordered a diagnostic ultrasound. It would be two weeks before I could have the ultrasound done. Two weeks of thinking: “there’s a growth, I’m not pregnant, what is this growth?”

Sitting in the waiting room, waiting…waiting. The techs were running behind, and I was the last appointment of the day. I could tell they were tired. One of them put the transducer down and said, “Wow, easiest diagnosis of the day! You’re pregnant. Do you want to know the sex?” This was June 1st. The baby was due at the end of September.

Things progressed fairly quickly after that. Then, six weeks before she was due, the doctor was concerned about her lack of movement. He said he didn’t know if she was lazy or if there was an issue. There was a lot of amniotic fluid; more than there should be. I had fetal stress tests. I had to lie down twice a day and time how long it took for her to move ten times. If it went over an hour, I was to call the doctor and go to the emergency room. It was often 40 minutes, 45 minutes, sometimes 55 minutes.

Finally, at one of my appointments, the doctor gave me a heartfelt talk. The baby was worrying him. He recommended taking the baby now, a month before her due date. She wasn’t moving enough. He feared there was an issue that the ultrasounds couldn’t see. I agreed. So, we arrived at the hospital on September 1st for a planned c-section (my third).

When she was born, she was a good size but looked so much smaller. She had difficulty regulating her temperature, and had to be under a heat lamp. She couldn’t cry. She squeaked like a mouse. But my little Sami was alive and healthy. Sami was always small for her age, and as time went on, it seemed like there was always just one more thing. Oh, joy…another ear infection. Ear infections took ages to clear up, and multiple rounds of antibiotics.

At every checkup, the pediatrician obsessed over her size. We were thrilled when she actually hit the growth charts. She had urinary tract infections at way too young of an age. We ended up having to have a renal ultrasound to make sure her kidneys weren’t damaged. Her ankles hurt, and she would be in tears from the pain. She had flat feet and needed orthotics.

She complained about not being able to see well, and her head hurt. We had her eyes examined and discovered her eyesight was horrible. I had a lot of guilt from that one for waiting so long to have her examined. Then scoliosis reared its head. Later, we received a diagnosis of ADHD without the hyperactive component, and increasingly large dosages of medication.

Before the ADHD diagnosis, it was an adventure taking her to the store. It was constantly, “Where’s Sami?” “Come on, Sami.” “Sami?” Anything could distract her. But what an imagination she has, and such a joyful and loving nature!

But she would fixate on things. When my brother died, she fixated on the concept of death. It was difficult for a 6-year old. The fixating continued for months. Her childhood seemed like a never-ending episode of ‘what’s next.’

In the dark of night, I wondered if it was because of my age when I had her. Was it because of something I did? Why? Why were those so many small things physically an issue?

We went in for her yearly checkup when she was 13, and the pediatrician had finally had enough. She wanted a karyotype test. At first, she just said it was a blood test and only said what she was testing for after some pressure. Turner syndrome. I’d never heard of it. That would change, of course. This was in November, right before Thanksgiving. Because this was a diagnostic test, it would be subject to a deductible. I didn’t have the money right then, so I needed to wait until January, when my flexible spending account was full again.

But, as I read through the list of the possible signs of TS, I knew. I didn’t need a test. I just knew. Sami had TS. I fretted and fussed because she was 13, and things were getting late to be able to start treatments and testing. Finally, the test was done, and the results were back.

Her diagnosis: Mosaic Turner Syndrome.

The pediatrician said she needed an endocrinologist, a heart exam, and a meeting with a geneticist. There was an endocrinologist in the same group that was familiar with TS. The earliest cardiology appointment was weeks away. The earliest genetics appointment was in five months. Our pediatrician - a force of nature - wouldn’t stand for a five month wait and was able to get it moved up to mere weeks.

The genetics doctor said that, with her results, Sami shouldn’t have had delayed puberty, short stature, and all the other things she did have. When it was finally impressed on her that Sami did have all these, she was on board with a fast appointment. When I told Sami she had TS, I was nervous. I started with the litany of her signs and explained that now we knew why. Her response was pure Sami. “Thank goodness! I thought I was just unlucky!”

Within a couple of weeks of the diagnosis and first endocrinology appointment, we were able to start growth hormone. The doctor wasn’t hopeful she would even make it to 5 feet. Sami, as always, surprised everyone. She hit 5 ft in 2 years, and we were able to stop the injections. Then, just because, she grew another 3 inches. Of course she did, she’s Sami!

I will never forget the first time we went to a TS conference. It was in Kansas City. We walked into the hotel, she looked around and said, “these are my people.” My brother had stopped in and he told me, “I never saw TS in Sami until I looked around here. I see it now.” If you would have been looking for her during the dance at that conference, you would have found her outside, crawling around the bluff the hotel was built into, looking for fossils in the rocks. There were loads of them, and she was thrilled. She even told some people who stopped to see what she was doing about the different fossils. Wearing dress clothes and crawling around on rocks - that’s my girl!

As Sami once said to me, “It is different knowing you have TS and knowing other people who have TS.”

True words. I can’t really know her journey, I am on the outside looking in.

Now, nearly ten years after her diagnosis, Sami is in her final year in college and making plans for her life. She is unstoppable. She is completing an anthropology degree with an emphasis in archaeology. She has owned her TS. It is something that is a part of her like her hair or her eye color, but it does not define her. She has gone back to her high school a few times to discuss TS with science classes. She has given a presentation to a college class at the invitation of the instructor. This is part of who she is. It is not all of who she is.

Early on, I called Sami my surprise child. And she surprises me all the time. And, as events unfolded, I realized she wasn’t just a surprise, she was a miracle. This is Sami: Fossil Club President (and major impetus for the creation) of the atlatl (this is an ancient spear) club in college. Two weeks at archaeology camp in high school (thanks to a scholarship from TSSUS!) J.K. Rowling and Rick Riordan fan. Doctor Who and Supernatural. Archaeology. Dinosaurs. Beloved Tia to her nephew. Advocate. Defender of the bullied. And she happens to have TS.

This is something I wrote for Sami as she was in the early stages of her journey. She loves it. And she says that going up the rocky hill is much more fun – there are great rocks there to search for artifacts and fossils.

Do not label me Petite, Disabled, Small. Do not Label Me.

I am Bright, Determined, Driven. See Me for who I am, not the Labels you give Me.

Do not Label Me "Small". I am Compact, Capable, Surprising.

I am Dynamite in a Compact Package.

I will make My Own Way. My way may not be your way.

My way may go up the rocky hill instead of around on the paved road.

My way may hit snags and boulders too big to climb over, but I'll find another way.

I ask you don't do it for me.

Be there to sit with me a minute if I fall until I can get back up myself. To love me.

My way is not your way.

Oh, but the sights I will see going up that mountain!

Watch my journey and live it with me.

Do not label me.


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