Hi, Im Tasia Duncan.
The reason for this whole blog is to tell you about “my journey” with our sweet baby girl who was diagnosed with Trisomy 18.
I have a very sassy 2 year old who runs my world. Her name is Hayven Grayce Duncan. She is my world and I honestly don’t even remember life before her. Like there was a time I didn’t have to find missing socks, or pick up a sippy cup every time it fell on the ground? Yeah I don’t remember that.
Her daddy (Riley, I may talk about him a lot during all this) and I met when I was a Junior in high school and he had just graduated that year. He took me to my Junior prom and I knew from then on I didn’t want to spend a day without him in my life.
This year (2017) will be 5 years together and in September we will have been married for 4 of those years. I cant believe how fast time is flying by. So hold onto your loved ones and cherish every single second you have with them.
We found out in June of 2016 we were expecting our second little miracle and we were over the moon excited about it! At 30 weeks along we found out she had Trisomy 18. It is a pretty rare form of down syndrome. She just got an extra chromosome (chromosome 18) during fertilization so there was absolutely nothing I could have done or prevented from this happening.
After we found her heart problem, not knowing exactly what it was, I stopped taking every medicine I was on (besides prenatal vitamin.) It probably wouldn’t have mattered but I was blaming myself for her having a heart problem thinking maybe it was my sleeping pills, or my anti nausea, maybe even the Tylenol. You know the guilty mom feeling we always get? That was me.
We had so many plans, we were planning vacations to take the girls on, I was thinking how am I suppose to get both the girls to sleep at the end of the day. I imagined what my everyday life was going to be like with 2 babes under 3. Hayven is the absolute sweetest. She has such a tender heart and always hugging and kissing you when your sad or when she hurts you. I just could not wait to see her affection with her baby sister.
We always talk about her sister. She knows where she is (my belly) and she often kisses and blows raspberries on my belly to play with her. It breaks my heart every single time I think about not being able to bring her home from the hospital. I have to tell my baby girl that her sister is going to heaven to live with Jesus. All I ever wanted was for her to have a sibling because she loves other kids. I don’t think I’ve ever had to get after her for being mean to other kids.
I just keep hoping for a miracle. That maybe I will wake up from this night mare and it will all be over. Or maybe all the testing we have done is wrong. Maybe the doctors are wrong. I just can’t quite figure out why god is putting me on this Journey. What did I do wrong? Why do I deserve this? Am I bad mom? How the hell does someone get over this heart ache? There isn’t a single day I haven’t cried about this.
I wouldn’t wish this hurt on my worst enemy. Why do people that neglect and hurt their babies get to have babies? But here I am ready to give a limb to my baby to save her but I cant even do that.
Besides her heart deformity they have found no other indication of Trisomy. A lot of babies will have their organs on their outside of their body, but she was perfect. Sometimes their spines are out of place, but she was perfect. Maybe their heads were to big, nope she was perfect. Her hand and foot crooked or deformed? Nope she was perfect. Her face looks perfect. There was NOTHING wrong with her. NOTHING. We were going to fix her heart problem but thats not even an option now.
So here I sit with boxes full of baby clothes, an empty carseat and a crib thats in a million pieces that will probably never be used. I still feel her move every single day. She is still alive and growing in my belly and if I could I would keep her there forever just to save myself the time and heart ache of planning a funeral for my unborn daughter I would. Because I know she is safe.
Im sorry I’m just rambling on now. But I hope you guys will continue following my journey. All I really want to do is help anyone else going through anything similar. I know how it feels. I am here if you need to talk.
Feel free to “like” my posts, comment or follow my blog. I appreciate everyone so much. I am trying to find the blessings in such a crappy situation. At least my baby wont suffer her whole life and thats what I keep telling myself.