The End

I've oftentimes wondered why I've written this.

I still don't know.

I don't know what solace it may bring me, or Nora, or a random mom struggling with a confusing diagnosis of her unborn child.

Or maybe I'll never see these plastered pink blog walls again. But I know that our written story ends here. It's time to carry with me my newfound confidence in myself, my family and my daughter, compliments of Miss Nora Grace, and celebrate each and every day together!

I've seen a lot of women write about their children with a diagnosis. And oftentimes they say, "I wouldn't have my child any other way. They were put on this Earth exactly as God intended. He hand picked my child for me and for these reasons (insert reasons here)."

I don't feel that way. I feel like Nora is a blessing. I feel like Nora is way stronger than any kiddo I've met thus far. I feel like God has granted us the pleasure of being her parents. In her short life I've learned more than I could have imagined, gained more than I knew possible, and through it all secured an appreciation for life that I was certainly lacking. But I absolutely would have Nora exactly as she is, plus one more chromosome if that were a choice.

No. It's not because I don't love Nora for every ounce of her being, exactly as she is.
No. It's not because I hate her having Turner's Syndrome.
No. It's not because I haven't accepted or embraced this diagnosis yet.

It's because it sucks that that one missing chromosome makes for so many struggles on ones life. It's totally not fair. I'm not excited to hold Nora's hand through the shots and the tears and the doctors appointments and the hard discussions. I'm so terribly sad that I can't just take her place and do it for her. But I can't, so I can only be her mother. I can be there for her in every way possible, except for this: I can't make the shots go away. I can't make the doctor appointments stop. I can't promise her heart will not have more problems. I can't give her children of her own. I can't make social situations easier to understand. I can't make math unconfusing (that's a word, right? ;)). I can only sit back and watch and pray that God grant us all of the joy and strength and laughter he has thus far. It's because of Him she is here with us today, it's because of Him we have managed the dark times, and it's because of Him that we will continue to thrive.

Turner's Syndrome is so far from the end of the world. At the end of the day, it's no deal breaker for a happy and full life. But it's certainly something worth noting, something challenging, something no one WANTS to have on their plate- mother or daughter.

But, here we are.
So, let's turn lemons into lemonade, and get on with it.

From the very bottom of my heart I thank every one of you for the support, guidance, encouragement and love. I can't express what a joy it has been to have you all alongside us through this journey. And the love you have shown our darling girl--it's the greatest joy I could have ever asked for.

Thank you.

Confidence

Confidence.
This is a word that I've always looked up to. I've never quite had the confidence that I feel is adequate for a full life. I might even say that at times I've not quite felt adequate myself.

One might argue that having my very first baby girl, born with defects and "inadequacies," might severely hinder one's ability to feel adequate.

Lucky for me this isn't the case.

Here is Nora's list as it stands right now:

-repaired coarctation of the aorta.
-bicuspid aortic valve
-Ventricular Septal Defect
-aortic stenosis
-hypertension
-CPAMS, removed from the right lung.
-unknown masses on the left lung.
-loss of ovarian function
-unusual shaped kidneys
-high palette
-webbed neck
-extra skin on he neck
-bowed shin bones
-Ptosis of the left eye
-Turner's Syndrome

But here is what I see when I look at Nora:

-joy
-determination
-strength
-beauty
-innocence
-curiosity
-wonder
-stubbornness
-a wild side
-energy
-laughter
-smiles
-love

Most importantly, I see a baby.
Nora Grace is a baby just like any other baby in the world, and unlike any other baby in the world. She is unique. She is our daughter. She has her daddy's eyes. Her mama's nose (and unfortunately my toes?). And some features of someone with Turner's Syndrome.

We could spend a while reading Nora's medical charts. We could analyze more X-rays than one could imagine. We could discuss the meaning of each and every part of Nora's body. And I will. I will spend every second of time required of me to make sure the decisions made regarding Nora's health and future are truly in her best interest.

But I won't spend a second more than is required. You see, the more time I spend devoted to the medical needs of this darling girl, the less time I spend giggling on the living room floor with her. And the giggles are an essential part of her health and future as well.

We arrived home from the dreaded lung surgery nearly a week ago, and we were thrilled to get home. It wasn't a smooth exit from the hospital as Nora left much less healthy than she entered it, and it has been anything but a smooth transition back into life as we know it.

But, we did it!
We did pregnancy.
We did delivery.
We did heart surgery.
We did therapy.
We did feeding issues.
We did reflux management.
We did RSV season.
We did lung surgery.
We did the first six months of parenthood!?

We have managed it all. We are smiling. We are out the other side. We are living life with our baby girl who isn't in any way how I imagined her, but rather a gazillion times more wonderful. I have more pride in Nora Grace than in anything else worth dreaming up.

And thus. I have confidence.
When we first arrived into parenthood, just over a year ago,  our baby girl was still so small in my belly,  and I lacked confidence. I didn't know what was to happen. I didn't know she would be ok. I didn't know what the future might hold. I was uncertain and scared and so very naive.

Today though, I know.
I know that Nora is going to be more than OK. I know that Nora can do anything she sets her mind to. I know that Kevin and I can work together as a team to be parents. I know that we can live in the hospital. We can manage grueling exam and test, after grueling exam and test. We can manage medication. We can put our trust in doctors and nurses to give her the care she needs and repair the parts that need it. I know that we have the strength to ask questions and ponder alternatives. I know that we can endure hardship to get to a more promising future. We can make decisions for Nora, and discuss when it's time for her to make decisions for herself.  I know that we can get through a night of tears. We can manage a poopy onesie and a hungry baby and a fussy baby and a sleepless baby and a fed up baby. We can challenge our previous thoughts and create new solutions. I know that we can be open minded. I know that we can laugh at our baby and with our baby. I know that we can love with our whole hearts. We can see life's hurdles as perfectly imperfect, and smile all together as we do it.

The list of imperfections will likely grow. The days spent at Children's Hospital may continue to rise. The list of surgeries and tests Nora must have may not be complete. But neither is our time to grow as a family. We have been given the most wonderful gift of joy and strength.

And with it He gave us confidence.