February 1- Turner Syndrome Awareness Month


Nothing is more appropriate for this post than having my daughter, who has Turner Syndrome in a picture wearing a butterfly costume to celebrate Turner Syndrome awareness month!  I am beyond thrilled to have a month where I can educate anyone interested in learning about TS.  Let me tell you about Eva’s journey, in a different way than I have shared it in previous posts

Eva shouldn’t be here in a number of doctors eyes.  We were told to plan for the worst the whole pregnancy, when it came to our daughters survival and so we did. When she survived we were introduced to a 3.5 lb little girl who had an extremely large cystic hygroma that resembled a pillow attached to the back of her neck. It’s safe to say her weight was much less than that was given. Nurses remembered her not by her name, not by her face but the hygroma. As mom and dad we didn’t know how to feel. We felt confused because we didn’t understand how she survived her medical complications, we were sad thinking we may not get to know who this little girl would be, but of course Eva had different plans than anyone who doubted her. Till this day she still proves to be a rebel.

Eva has not had the easiest life and she has faced more life changing events than most adults.  People tell me that it’s good that she’s going through this as a baby because she won’t remember, but I think they are wrong.  I don’t think it’s a coincidence that for over a year she cried the hardest if you sang two specific songs (played In the NICU) in a slow melodic tune.  I also don’t think it’s a coincidence that when she parties around 2 in the morning in her crib alone, clapping and laughing, just like she used to in the NICU with her favorite nurse.  Everything she has been though remains with her. It is a part of her and it shows.

I only hope the first repair done to her heart at 8 days old helps her endure how rough this life is. I hope the second repair to her heart done at 6 months old gives her the strength to look past how ugly some people can be and still be able to love everyone who deserves it, even those who don’t.  When she finally needs her third repair, I pray it helps her realize how strong she is and how many lives she can change, just by her story.

Her life already has changed her brothers life because I don’t think they both would be here without each other.  Her life has changed her dad’s life because he knows having a daughter is the hardest job any father can have and she’s changed my life because I sincerely never knew I could do all of this.  All of the heartstopping, breath holding, tear jerking moments I have had in these 2 ½ years has been the most character strengthening moments of my life.  I am proud to say that while not everyone is chosen for this kind of parenting, I thank God I was.

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