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| Ready for summer! |
And this positive attitude extends towards my hopes and dreams for our Nora Grace. I've spent a great deal of time searching for my silver linings, being grateful for all the joy we've been given, counting my blessings and counting Nora at least twice.
But here is my truth- this is all very hard and daunting, and this mama needs to let it out a bit.
To start, we had a WONDERFUL experience at Children's Hospital on Friday at their BRAND SPANKIN' NEW Multidisciplinary Clinic. This had been open one week when we visited. The clinic is available to many different realms of medicine and used by those that helped fund the construction and staffing of it (probably by others as well- but that's how our end of it worked). The Turner's Syndrome Clinic runs once a month-ish and gets to take over the clinic for a full day. On those days the halls are filled with geneticists, endocrinologists, cardiologists, neuropsychologists, and this list goes on...whomever someone with Turner's Syndrome needs to see, they appear! It's magical. And it's all in one place, and they ALL talk and are on the same page and know EVERYTHING there is to know about Turner's Syndrome. And they are all these smarty pants doctors that have hearts that function for feelings, not just breathing. It's beautiful.
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| Enjoying the Turner's Clinic |
And, they remembered Kevin and I. They remembered baby Nora Grace. They remembered ALL of you! Before we even stepped onto the elevator a woman stood next to us with Turner's Syndrome goods in tow. Before we made it up to the clinic we had been reintroduced (it was the president of the Turner's Syndrome Chapter of Colorado), told how grateful they were that Nora was doing so well, asked how Kevin and I were handling everything, and told to come get treats and goodies in the family lounge. As we entered the clinic the woman in charge, Doctor Pickler, remembered us from the Turner's Walk last September as well. She remembered our large team and thanked us all for helping to fund the clinic. Throughout the doctors and check-ups with Nora we visited the family lounge meetings families we had met before at the Turner's walk, and meeting new families, all there to treat their daughters with Turner's Syndrome. It felt so wonderful to be with other families that have done this and are doing this all, and also it felt great to eat some goldfish snacks provided by the chapter. :)
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| :) |
More than that, I saw the scars of the other mothers. And they could see mine. It felt good to be with other moms that can relate, and see my worry for what it really is. I don't need to explain myself. I don't need to pretend. I don't need to be always positive. I don't need to remind them that I adore my daughter with all of my soul, but yes, I am going to talk about what problems I see. They know. They know my love, and they know my worry. They know my heartache. They shared their stories of diagnosis. They shared their stories of cardiac surgery or doctor visits. They shared it openly, and honestly. And they showed me that whether it was two months prior, or twenty years, it's real and that those memories don't fade. But they also showed me that their daughters are positively beautiful and strong and can endure a lot. They showed me that even though there is so much worry, some days it's just no big deal at all. Some days it just ain't no thang. And some days, it's crumpling. And they showed me that it is a-ok. I learned that my life won't always feel like it's revolving around a world of Turner's. There will be other things. Some day.
It's a joyous feeling to have that group of women that just get it.
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| Getting so big! |
But, what did we learn? How did the appointments go, you ask?
Well, we learned a lot more about Turner's Syndrome, we learned all the things she is at risk for in more detail, we learned all about her heart and the true challenges Nora faces. We learned she isn't the only girl with Turner's with the many heart defects she has, but we learned that if she has one, the increase for other problems is real and daunting. We learned that the balance between having a healthy heart and overworking her heart is a real challenge, and something we have to keep close tabs on as she grows. We learned the tests she'll need, the shots she'll need, the way the doctors will help us and when. And we left with so many "risks"to carry around with us, but zero answers.
Buuuummmmmmmmmmmmmer.
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| Obsessed with this ball! |
Nora is growing phenomenally. She looks beautiful. But also, she is at risk for what feels like a billion things. And there is always a number next to it: 10% get scoliosis, 15% have thyroid problems, which can lead to Diabetes, at age 15-18 (or earlier if needed) she needs a cardiac MRI, at ___ age she starts shots, at ___ age she starts Estrogen, the learning disabilities, the social struggles, the psychological impact, etc. etc. etc. "Oh, and by the way, the literature about women with Turner's Syndrome isn't good- many women don't lead real successful lives into adulthood- we need to really work as a team to help Nora know just what she is capable of, and help her to lead a successful, happy, independent life."
But then again, all of these are just "risks." They aren't for certain. We may deal with them, we may not.
More of the same.
I felt a little bit like pregnancy was happening all over again.
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| Mommy's favorite jammies! |
We spoke with one doctor about the challenges of having a child with such risks. She said, "Truly. It's a lot. But we have a blueprint to follow. No other children you have with come with a guidebook to tell you what to look for. Their issues may just arise without warning, without you looking. For Nora, we know what to look for. We know what problems to be aware of before they happen, so we can prevent them and solve them before it's potentially too late. That makes it all so much easier."
That is probably true. I want to believe her and be thankful. I want to be overjoyed about knowing what to look for.
And we sort of are. We realize how incredibly lucky we are. We still count the blessings, and we know those four months of pregnancy filled with worry and wonderings are all worth it to know what we were up against and process it before Nora was here. It helped us to be positive and happy and there for her in exactly the right ways when she arrived.
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| So much to smile about! |
But, let's talk about worry. We all worry about our children. We all wonder if something is terribly wrong without our knowing. Every mom I know has poked their sleeping baby just to ensure their still breathing. I know it is all true. Worry is part of this parenting gig. BUT GOOD GRIEF, HOW DO I KNOW THAT NORA'S STAPLED HEART PARTS ARE STILL STAPLED!?!? HOW DO I KNOW THE LUNGS ARE STILL WORKING LIKE THEY SHOULD WITH THOSE MASSES!?!? DOES SHE HAVE MASSES!?!? AND MY GOD, I HAVE MY LIST- WHAT ELSE IS TO COME!?!?!?!
My truth: I'm tired of wondering what other battles we face. I'm tired of looking at the list and trying to choose the lesser of two evils- I know we'll face some of them, which ones are the ones that I can "deal" with? OR, OMG, WHAT IF MY NORA GIRL HAS TO FACE THEM ALLLL!? I'm so sick of thinking about how we'll afford growth hormone shots for so many years. I'm tired of wondering how much height we will be able to squeeze out of her. I wish with all of my heart I could say with certainty that she will one day be able to run races next to me, and beat her dad down the ski hill. But I can't. I don't know what Nora's heart will be able to take. I'm not sure if the impact of the lung masses, or surgery will leave her with a lesser lung function. What if she does get scoliosis and it's severe? They say it's fine, we can do things- but then you read the literature, and it's just not always fine. I want to know what social skills we need to be ready to practice and help her learn. I want to simply enjoy living life with my baby girl without all the daunting worry already piling on. I want to just love on her and be grateful, and I want so badly not to think about ALL THE THINGS. The things can be overwhelming. They can destroy you in a matter of minutes if you're not careful.
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| Feel asleep sucking on her carrier. |
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| Snuggles- So much fun! |
We couldn't be in a better spot with Nora and her care. We are so very lucky. We entered the world of Turner's Syndrome at a time when research gains are being made, treatment is incredible, doctors are available in plenty, and we knew it early, making it all so much easier to manage.
But for goodness sakes, wouldn't it be lovely if Nora could struggle with math one day and we won't say, "It's because of the Turners." We could just say it's because math is hard. If when she is twelve and as awkward as it gets I would love to be able to say, "Tweens are so weird." And they are. And it's true, they are soooo awkward. But also, I will be thinking, "Is this because of Turner's? Is the Nonverbal Learning Disorder that is happening before my eyes?" I wish we didn't always have a direction to point when we discover Nora's shortcomings.
Sometimes ignorance is bliss.
The more we read and learn, the more worry we have, and the less we know.
So my truth: sometimes it all totally sucks. And sometimes, it's all beautiful and wonderful.
In five days we head to Children's Hospital once again. This time a little visit with ENT to see if that vocal cord is still paralyzed, or if we finally landed on the good side of one of the statistics - after all, 35% of paralyzed vocal cords heal. :)
And, those lungs. The big question will be answered. Nora may be sedated for a CT scan to finally see those dang lung masses once again. And then we'll finally know- lung surgery, or not? Our tensions are rising. We are anxious to know the answers. In the mean time, we shall visit the pool and enjoy the warm weather. :)
Send a little, or GIANT, prayer for Nora Grace as we visit Children's and find out our next steps.
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| Someone thinks it's funny when she pukes all over herself. |
A great big thank you to everyone. The Turner's Syndrome Clinic is available to us because of you. There aren't enough ways to says thanks for that!
