A year ago today our lives changed forever. A year ago today Ashlyn Ruby was born. A year ago today I learned that the course of your life can change in the matter of just one sentence. For us, that sentence was, “We believe your daughter may have Down Syndrome.”
Ashlyn was born on a Thursday and we would not know the official results of the chromosome test until the following Monday. During this time Ashlyn was in the NICU. She started off there because there was some fluid on her lungs from a very fast delivery, but she stayed there a little longer while we waited for the test results and so they could make sure she could eat okay. She soon proved that she could eat just fine. During this time we had many conversations with doctors and began to hear words like, “mental retardation”, “low muscle tone”, “special education”, and “special needs”. These days were the beginning of the darkest days I have known to this point and filled with more tears than I can count.
I remember the exact moment we were told the results of Ashlyn’s chromosome test. I was in denial and very much hoping the doctors were going to say they were wrong. We knew the neonatologist was about to come in and right before she did my husband, Troy, and I were sitting together in that room, just waiting. There were many tears and Troy grabbed my hand and we prayed. I remember him saying, “God, whatever we are about to hear, we know you are with us.” The doctor came in and sat down in front of us. I can almost remember her words exactly, “We have the results of the chromosome test. She has an extra chromosome, which means she has Trisomy 21. She has Down Syndrome.” And, just like that, life was different.
My heart was in more pain than I can describe as I immediately started feeling the death of the daughter I thought we were going to be having. The daughter I had been dreaming of and preparing for. My mind started spanning the years ahead of us and I was filled with so many questions. I wondered about her abilities to learn, how different she would look, if she would always be made fun of, if we would be able to understand her, if she would have to live with us forever, and if we would ever be happy again. I thought of our oldest daughter, Kyla, who at that time was 2 ½. In all honesty, when we found out we were having another girl, I just assumed I would be getting another Kyla….a little girl who had become the joy of our lives. I grew up with a sister who to this day is my best friend and I had already had visions of Kyla and our daughter on the way being just like me and my sister. I began to feel the reality that not only would that sister relationship be different, Kyla’s life would be different. From that moment on, she would always have a sister with Down Syndrome. The future for our family was so very different than how I thought it would be. In those moments and days to follow, I really thought if someone could die of a broken heart, I surely would.
A lot of what took place in those days in the hospital following Ashlyn’s birth is a haze, but there are some things that I will carry with me forever. I remember that Troy and I would sleep side by side in a little hospital bed because we needed each other so much it was like we couldn’t even stand physical separation. I remember before falling asleep at night in the dark hospital room with our newborn daughter down the hall in a NICU room, Troy would say to me, “Baby, whenever you need me, I am right here.” And sure enough, I would sleep for a little bit, wake up sobbing, and he would be right there holding me. This would go on all through the night. I remember in the mornings after a night of crying, I would say to Troy, “I don’t think I can walk down the hall to her room. I just don’t think I can do it,” and my husband would look at me and say, “We can do it,” and he would physically hold me up as we were walking so we could make it there. As I look back on that time, I know that my husband was being Jesus in the flesh to me. He was literally holding me up when I was about to fall. Looking back, I see clearly that Jesus was carrying us both.
Seven days after being in the NICU, with Ashlyn doing very well, we were released to bring her home. I remember walking through the door of our house with this new little baby girl and I really, really didn’t know how I was going to do it. It was the strangest mixture of feeling like I didn’t know her, but at the same time loving her. The weeks and months after coming home were still filled with much pain, grieving and many tears. I could write much more about the thoughts, conversations and prayers that filled those days, but all I know is the “loving her” part just kept getting stronger and stronger.
A year later, as I sit here on Ashlyn’s first birthday, I am in awe of the amount of healing that has taken place. I know without a doubt I owe all of this to my Savior, Jesus. He is the healer of our hearts. He watched over us as we cried and questioned and never left our sides. We know He is good and all He does is good. We are so thankful.
I never thought I would say this, but I am honored that God chose our home for Ashlyn. It is a gift. At the same time, I would be lying if I said there weren’t still times of sadness or questioning or feeling overwhelmed. Those times come and I know they will come in the future. But, I also know God goes before us and will give us everything we need for every point of the journey. We are a family and we are together. Each day is filled with hugs, kisses and many “I love you’s.” There is great joy and much laughter in our home….and peace. We are at peace. You can’t be around Ashlyn and not fall in love. She smiles easy and loves easy and we are so thankful she is ours.
Over the course of this past year I had the privilege of doing one of my favorite studies for the second time, “Breaking Free” by Beth Moore. As I was doing this study, a quote from it just jumped from the pages and into my heart. It says, “God never allows or appoints a fire unless He can bring beauty from the ashes.” We are seeing it with our own eyes. Pain turning into joy. Ashes turning into beauty. It is happening. We are living it….beauty for ashes.
Shari, I just balled through that post. Beautiful words and a beautiful story. You are so brave to be so real and honest and you will speak to so many people who are going through the same thing. Thank you for sharing! God has definitely picked the best home for Ashlyn!
ReplyDeleteThanks so much for your raw honesty Shari-we love you and Troy and your sweet babies so much! I love how the title of your blog kind of plays on Ashlyn's name too-not sure if that was intended or not but it's true, God certainly has given you something beautiful, even in the midst of your heartbreak.
ReplyDeleteShari,
ReplyDeleteThank you so much for your words. I am in awe of your honesty and ability to lay it all out there. Ashlyn has been such a blessing to everyone who meets her. You can't help but see the face of God when she smiles! I love you and your family very much.
Thanks for sharing your life and heart, Scams! We love you.
ReplyDeleteSo. Beautifully. Written.
ReplyDelete