Koralyn loved Starbucks too, well in a way she did as only a baby can. You see, there is a Starbucks in the Cook Children's hospital. On any given day you can always find a number of weary parents, doctors and nurses frequenting that little store. All waiting for a cup of courage or energy or both really. In 2012, when I lived at Cook with Koralyn I was a frequent customer of that little Starbucks. I would walk in the first floor on my way up to the NICU from the Ronald McDonald House across the street. I would usually get a grande hot coffee and fill it with creamer and cinnamon. After this became a regular thing for me, the nurses and I noticed that Koralyn loved the mermaid on my coffee cup. After finishing my beverage, I would rinse out my cup and she would bat at the little green mermaid. Often she would take her dainty long fingers and scratch at it, trying I suppose to get that little mermaid off the cup and into her hands. We would laugh and joke about how I needed to buy her a stuffed version of the Starbucks mermaid. So to this day when I see the green Starbucks siren I think of my sweet Koralyn and those seemingly happy baby moments I was able to enjoy with her. I wonder would she still love the mermaid? Would she insist on having a cup of Starbucks for herself? I smile at these thoughts but also long for the answers I will never get this side of heaven. Needless to say, the sites, smells, and sounds of Starbucks remind me of my girl.
It was pretty crowded when we arrived (I think Texans take any rainy and "cooler" evening as an excuse to enjoy a hot beverage) I told Asa to go snatch the little two seater table in the corner for us, while I stood in the long line and ordered. I stood in line behind a dad with his young teenage daughter, she may have been 13 or a little older. They stood talking until it was their turn to order. The dad ordering first, and his daughter going second and then proudly paying for them both.
Nothing too special about the situation in front of me, except for the fact that this young lady had Down Syndrome. She was so articulate and beautiful, her father was giving her the opportunity to talk with the cashier. As I stood there watching him, watching her, both so proud of this simple and yet I am sure profound moment; I was suddenly thrust back to December 2011. To the little room with the big ultrasound machine where we received our first diagnosis with Koralyn. I heard the words, the heavy, scary words: I think your daughter may have Down Syndrome with AV Canal Defect. I remember when the doctor left the room to give us some time to process these words and Amos and I held one another and cried. I remember leaving the office and calling my Mom. Telling her the news we had just heard. I told her through tears and I recall that she said, oh no with such anguish in her voice. She cried and told me it would all be okay, that we would love this baby no matter what and it would all be okay. Words I had told to my own baby girl in the bathroom of that office after we were told of her Down Syndrome. I went into that quiet dark little bathroom and prayed and I rubbed my growing belly and told her it would all be all right. We would be just fine and we loved her so much, no matter what. That's what mothers do I suppose, they cry and pray and then they reassure their little one despite their own grief and fear. I believed what I told her, I thought as long as she is living we will all be just fine, as long as we can fix her heart, we can all adjust to everything else.
The next few weeks after our diagnosis were such a fog. We had to wait to see another specialist to confirm the diagnosis. In that waiting I talked on the phone with my family members a lot. I read articles and blogs and research about Down Syndrome. I tried to cope and come to terms with this new life we were about to live, I think we all did.
Then in January our diagnosis changed. It wasn't Down Syndrome with AV canal, it was simply and not so simply, Hypoplastic Left Heart Syndrome. The first question I asked Dr. Roten when she told us the news was, is this HLHS better or worse then Down Syndrome with AV Canal defect? Her words were that some believed it to be better because Koralyn's HLHS did not come with the chromosomal defect of Down Syndrome. I recall blurting out that I would much rather have Koralyn with me having Down Syndrome then in the ground having half of a heart.I don't believe in any way that Dr. Roten held this belief of not having Down Syndrome being the better option here. After all she knows how treacherous HLHS is, I believe she was simply stating the facts for me in her experience of having to tell couples this sorts of devastating, life altering things. I felt strongly about my stance that I would rather have Koralyn living with Down Syndrome then dying with perfect chromosomes and HLHS. In the days to come, when I would tell some people the news of our new diagnosis, they would say unknowingly, and yet cruelly to my broken heart, well Kenda, at least she doesn't have Down Syndrome. I would not so graciously repeat my stance I took since hearing HLHS in yet another tiny room that is seared into my memory.
The thing is, I am not so sure when Down Syndrome became the worst possible thing your baby could have. Being in Special Education, I worked many of my practicums and student teaching in rooms with this individuals.I subbed in the classrooms no one else wanted. I tutored for a time even after Asa was born. I had some experience with these children and young adults. Let me tell you, that they are just like us. They have emotions, ambitions, fears, hopes and dreams. These beautiful souls with Down Syndrome have favorite things, pets, friends. These individuals are more like you and me then they are different. These individuals bring joy to those that love them, like any other child they bring all the emotions for their parents and their family's that come with raising a child. Yes, many times they also bring with them some medical differences and issues that most "normal" individuals don't have to deal with. You know what, that only makes them and their families stronger and more brave and beautiful. It only proves their worth and their resilience and will to live, and dream, and do.
I guess I was angry at all the well meaning words of my friends and loved ones that said, "at least its not Down Syndrome" because I have seen the beauty and potential in these souls. Not that I have some great power to do so, only that I have been allowed to help love and teach them and actually see them behind their beautiful almond eyes and their diagnosis of Down Syndrome. Talk to anyone that knows and loves an individual with Down Syndrome and I believe they would tell you the same. There are struggles and fears and setbacks with any child, any child at all and any parent who has been a parent long, will attest to that. I also think my anger came from a place of my motherly intuition. I somehow knew that this new diagnosis was scarier and more dangerous in many ways. The gravity of my baby only having half of a heart was sobering. A hole is one thing, a hole can be repaired, patched, sewn together. Missing literally half of your heart and trying to make half a heart work like a whole? Terrifying. I do not downplay the emotions and sometimes very hard realities that come along with having a baby with Down Syndrome. After all, for weeks I thought I was having a baby with DS and I was scared and in many ways devastated at dreams for my child lost in the fray.
So there I stood in the Starbucks line biting my lips to hold back the flood of tears and emotion I felt welling up inside. Grief once again struck suddenly and with full force. I wanted in that moment so badly for our story with Koralyn to be different. I wanted in that moment, and so many moments nearly every single day since her death, for my Korlayn to be standing beside me, whatever her supposed defect. As I watched that beautiful, fully human, fully alive, girl and her dad, I wanted so badly for things, for diagnoses to be different.
I stand by my original position that I would MUCH rather have Koralyn here with Down Syndrome, then have her Chromosomes be perfect and her be in the ground like she is now. Those perfect chromosomes did absolutely nothing for her half a heart did they? Life is a gift, even if to some, that life is deemed less than, defective, not worthy. The only one who I believe gets to decide that is God himself who forms us each with purpose in our Mother's womb. I am grateful he saw fit to choose me for Koralyn. Being a mother to five beautiful children is a great privilege, even if that means loving one of them on Earth, when I can't still parent them on this Earth.
Tonight I witnessed beauty and pain in the everyday of a Starbucks line. I bit my lip and held back my tears. I took my turn to order and went back to sit with my 10 year old Son. I savored my time alone with just him, because as he said the other night, only 7 more years until he is off to college. That's just what moms do right, they cry and grieve (sometimes as privately as possible in the Starbucks line) Then they dust themselves off, smile and be brave for their children. My own Mom taught me how to do that well, and I am grateful.
Nothing too special about the situation in front of me, except for the fact that this young lady had Down Syndrome. She was so articulate and beautiful, her father was giving her the opportunity to talk with the cashier. As I stood there watching him, watching her, both so proud of this simple and yet I am sure profound moment; I was suddenly thrust back to December 2011. To the little room with the big ultrasound machine where we received our first diagnosis with Koralyn. I heard the words, the heavy, scary words: I think your daughter may have Down Syndrome with AV Canal Defect. I remember when the doctor left the room to give us some time to process these words and Amos and I held one another and cried. I remember leaving the office and calling my Mom. Telling her the news we had just heard. I told her through tears and I recall that she said, oh no with such anguish in her voice. She cried and told me it would all be okay, that we would love this baby no matter what and it would all be okay. Words I had told to my own baby girl in the bathroom of that office after we were told of her Down Syndrome. I went into that quiet dark little bathroom and prayed and I rubbed my growing belly and told her it would all be all right. We would be just fine and we loved her so much, no matter what. That's what mothers do I suppose, they cry and pray and then they reassure their little one despite their own grief and fear. I believed what I told her, I thought as long as she is living we will all be just fine, as long as we can fix her heart, we can all adjust to everything else.
The next few weeks after our diagnosis were such a fog. We had to wait to see another specialist to confirm the diagnosis. In that waiting I talked on the phone with my family members a lot. I read articles and blogs and research about Down Syndrome. I tried to cope and come to terms with this new life we were about to live, I think we all did.
Then in January our diagnosis changed. It wasn't Down Syndrome with AV canal, it was simply and not so simply, Hypoplastic Left Heart Syndrome. The first question I asked Dr. Roten when she told us the news was, is this HLHS better or worse then Down Syndrome with AV Canal defect? Her words were that some believed it to be better because Koralyn's HLHS did not come with the chromosomal defect of Down Syndrome. I recall blurting out that I would much rather have Koralyn with me having Down Syndrome then in the ground having half of a heart.I don't believe in any way that Dr. Roten held this belief of not having Down Syndrome being the better option here. After all she knows how treacherous HLHS is, I believe she was simply stating the facts for me in her experience of having to tell couples this sorts of devastating, life altering things. I felt strongly about my stance that I would rather have Koralyn living with Down Syndrome then dying with perfect chromosomes and HLHS. In the days to come, when I would tell some people the news of our new diagnosis, they would say unknowingly, and yet cruelly to my broken heart, well Kenda, at least she doesn't have Down Syndrome. I would not so graciously repeat my stance I took since hearing HLHS in yet another tiny room that is seared into my memory.
The thing is, I am not so sure when Down Syndrome became the worst possible thing your baby could have. Being in Special Education, I worked many of my practicums and student teaching in rooms with this individuals.I subbed in the classrooms no one else wanted. I tutored for a time even after Asa was born. I had some experience with these children and young adults. Let me tell you, that they are just like us. They have emotions, ambitions, fears, hopes and dreams. These beautiful souls with Down Syndrome have favorite things, pets, friends. These individuals are more like you and me then they are different. These individuals bring joy to those that love them, like any other child they bring all the emotions for their parents and their family's that come with raising a child. Yes, many times they also bring with them some medical differences and issues that most "normal" individuals don't have to deal with. You know what, that only makes them and their families stronger and more brave and beautiful. It only proves their worth and their resilience and will to live, and dream, and do.
I guess I was angry at all the well meaning words of my friends and loved ones that said, "at least its not Down Syndrome" because I have seen the beauty and potential in these souls. Not that I have some great power to do so, only that I have been allowed to help love and teach them and actually see them behind their beautiful almond eyes and their diagnosis of Down Syndrome. Talk to anyone that knows and loves an individual with Down Syndrome and I believe they would tell you the same. There are struggles and fears and setbacks with any child, any child at all and any parent who has been a parent long, will attest to that. I also think my anger came from a place of my motherly intuition. I somehow knew that this new diagnosis was scarier and more dangerous in many ways. The gravity of my baby only having half of a heart was sobering. A hole is one thing, a hole can be repaired, patched, sewn together. Missing literally half of your heart and trying to make half a heart work like a whole? Terrifying. I do not downplay the emotions and sometimes very hard realities that come along with having a baby with Down Syndrome. After all, for weeks I thought I was having a baby with DS and I was scared and in many ways devastated at dreams for my child lost in the fray.
So there I stood in the Starbucks line biting my lips to hold back the flood of tears and emotion I felt welling up inside. Grief once again struck suddenly and with full force. I wanted in that moment so badly for our story with Koralyn to be different. I wanted in that moment, and so many moments nearly every single day since her death, for my Korlayn to be standing beside me, whatever her supposed defect. As I watched that beautiful, fully human, fully alive, girl and her dad, I wanted so badly for things, for diagnoses to be different.
I stand by my original position that I would MUCH rather have Koralyn here with Down Syndrome, then have her Chromosomes be perfect and her be in the ground like she is now. Those perfect chromosomes did absolutely nothing for her half a heart did they? Life is a gift, even if to some, that life is deemed less than, defective, not worthy. The only one who I believe gets to decide that is God himself who forms us each with purpose in our Mother's womb. I am grateful he saw fit to choose me for Koralyn. Being a mother to five beautiful children is a great privilege, even if that means loving one of them on Earth, when I can't still parent them on this Earth.
Tonight I witnessed beauty and pain in the everyday of a Starbucks line. I bit my lip and held back my tears. I took my turn to order and went back to sit with my 10 year old Son. I savored my time alone with just him, because as he said the other night, only 7 more years until he is off to college. That's just what moms do right, they cry and grieve (sometimes as privately as possible in the Starbucks line) Then they dust themselves off, smile and be brave for their children. My own Mom taught me how to do that well, and I am grateful.
