Real Women. Real Stories. Real Bravery.
Happy Monday!! Thanks for joining us on our Live Brave journey! I am so excited for you to meet today’s contributor & to hear her story! I truly appreciate Alissa’s willingness to be vulnerable, to own her story & encourage & empower others through it!
Meet Alissa!
I told God “no” because I was sure I couldn’t handle something. I had this secret fear. One of those fears that silently gnaws away at you, and no matter how hard you pray or wish it away, it remains, and serves as a constant reminder that some things are just out of your control.
You see, my biggest fear about becoming a mom was having a child with special needs. I was standing firm on that old phrase “God doesn’t give you more than you can handle.” I was the first person to acknowledge that special needs were beyond what I could handle and God would never give that to me. Anything but special needs, God, you and I both know I can’t handle that. Nope, safe from that, check it off the list.
I remember it vividly. I was moments away from meeting my son Reece, sitting in triage waiting for my 3:00 p.m. emergency C-section. My mom was waiting with me and after a long pause, I asked the question that brought my secret, silent fear to the light. “What if he has special needs?” I can look back and see, almost touch, those words coming from my mouth, because it was a release. Almost as if asking someone that question freed me from the bondage of that fear I’d been carrying for nine months. I can’t tell you now what my mom said that day, but I know that she encouraged me, as she always does, with words that made me feel confident and brave.
At 3:04 p.m., my whole world changed. A tiny cry filled the room, the most beautiful sound. “He’s here,” I whispered to myself, my husband Jeff holding my hand ever so tightly. The doctor carefully walked him over for my first glimpse of my son, the moment I had been waiting for and I was ready. Through tears, I stared at him, focusing in on his eyes, they were all I could see and I knew something wasn’t right. The words ‘Down syndrome’ flashed in my mind and my heart started pounding violently, body numb with fear, mind racing to the worst of places. My first glimpse of him was so fast, I didn’t have time to study him, so I assured myself that my eyes had tricked me, and that all newborns look a little funny because of what they have just endured. I reminded myself that it can’t be true, not until someone tells me or a test proves it, and I pushed that terrible thought from my mind.
And then someone told me. “We have reason to believe that your son may have Down syndrome.” I looked to Jeff, who had heard that same phrase, all by himself, minutes before as I was still in surgery. I desperately searched his face for something, anything, to know that our son was ok, but his down trodden face said it all and immediately my spirit was crushed. I didn’t hear anything the nurse said after that, except when she said “you know, SOME of these kids go on to do really great things. I have a friend with an adult son with Down syndrome and he has the intelligence of a 7th grader, so that’s good news!” I didn’t cry. I didn’t speak. I didn’t do anything. My joy…stolen. I hadn’t even had the chance to hold him, kiss him, or tell him I loved him before a label was slapped on him. Had the nurse realized that what was just another day at the hospital to her was my whole life crashing around me? When I finally got to hold him, ‘DOWN SYNDROME’ was all I could see when I looked at him. This was not the baby I had dreamed of and this…this was not fair.
Questions filled my head as I sat there holding my new baby, who seemed like a stranger to me, not the baby I had felt growing and kicking inside. Hard-hitting, gut-wrenching, suck-the-breath-out-of-you questions like, will everyone know by looking at him? Will he ever have friends? Will people stare and make fun of him? Will he always live with me? Did I do something wrong? And the biggest question of all, why ME? Thinking back to that question I asked minutes earlier in triage…had I asked for this? Was God saying, “Yes, you can handle this…and here, let me prove it to you.”
I was at a crossroads. I could either turn my back on God because He hadn’t held up his end of the bargain or trust that He knows what He is doing and has a plan for Reece and our family. I had to make a choice. Why would I walk away from God now when He has blessed my life so immensely? And that is when my question of ‘why ME?’ transformed into ‘WHY me?’ Why had God chosen ME to be Reece’s mom? What is this innocent, sweet child going to teach me about life? I consciously made the choice to fully rely on God to bring me through my pain.
We didn’t find out Reece’s official diagnosis until he was two weeks old. I had been holding on to hope for nearly two weeks. This hope, resembling a strong woven rope, was holding me up, helping me through each day. Hope that our new little baby didn’t have to live under the label that doctors and nurses casually slapped on him when he was born. The karyotype blood test had been performed on Reece in the hospital when he was only two days old, but the results typically took two weeks to come in. Two weeks to stare at him and convince myself that everyone was wrong. Believing that his almond eyes were just a unique feature, and the palmar creases in his hands were passed along from a family member, after all, my grandmother has the same creases and she doesn’t have Down syndrome.
Our appointment with the pediatrician was on a Monday, a sweltering, August Monday. It was my actual due date for Reece, but the little man decided to surprise us two weeks early. This was the day we were going to get the karyotype blood test results. I dragged that hope into the exam room, feeling the rough fibers of that rope between my fingers, it was holding me up just as it had over the last fourteen days. Waiting for the doctor to join us in the room was beyond nerve wracking and all I could do was pace the floor, five steps this way and five steps back. We waited, knowing on the other side of that door were results that would determine the course of this little boy’s life, our life. Jeff held Reece as I paced and for what seemed like forever, and we waited.
The door swung open and in walked the doctor holding a crisp white piece of paper. I took a seat in the lone chair in the room and braced myself for the news. Without as much as a hello, the doctor said, “Well, we got the results…and he does have it.” My hope began to unravel faster than I could hold the rope together until it swiftly dwindled into the smallest of threads, eventually snapping from the pressure of the blow.
An avalanche of sorrow fell on my shoulders and with that I began to cry. Seeing my tears, “Oh, I thought you knew?” the doctor callously questioned. I couldn’t even believe that there could be anything but encouragement coming from her mouth at a fragile time like this, and I wanted to scream at her “NO! I didn’t know. I didn’t know he had Down syndrome for sure, but now I guess I do…don’t I?” But instead, I maintained my composure and the doctor excused herself so we could have some time alone. The remainder of the appointment is a blur to me, but the reality of Reece’s diagnosis was painfully clear.
A few weeks later, we received a visit from a representative from Sharing Down Syndrome Arizona, who called to request a visit with us shortly after we received our heartbreaking news. It took everything within me to accept her invitation as I was walking through a very dark place and struggling with acceptance. She was a kind-hearted soul who had a child with Down syndrome of her own. Finally, someone who really understood what we were going through. She gave us a new parent welcome basket filled with information and gifts, which I’m embarrassed to admit, sat in a corner for months before it was even touched. But it wasn’t the gifts she gave us that stuck with me, it was what she said that turned out to be the most precious gift of all.
“What you’re feeling isn’t good, isn’t bad, it just…is. And if I had a magic wand to wave this all away, I wouldn’t even do it, because you have to experience this heartache, this pain, this sadness to get to a place of true acceptance.”
There it was. Something I didn’t want to hear at the time, but now look back and know it was exactly what I needed. It went far beyond the “I’m sorry” that most people whispered with best intentions when we told them our news. In my heart, I knew we were not alone. How many parents had already navigated this path we were beginning to tread? And now, four years into this journey…I can honestly say, if I had a magic wand to wave it all away, I wouldn’t even do it, because I did need to experience that heartache, that pain, and that sadness to get to the place of true acceptance that I find myself in now.
There were hard days, weeks, months…and when I was at my lowest, God picked me up and carried me to a place of peace. When I said, “I’m afraid”, He quietly answered with “I am here.” Sometimes I think God lets us go through something challenging to remind us how strong and brave we really are and how powerful He really is. God has this amazing way of changing hearts and giving us the strength to get through something we didn’t think we could handle. When I used to look at Reece, ‘DOWN SYNDROME’ was all I could see, and now…now, I see a sweet, world changer who steals the hearts of everyone who meets him.
A verse that I think represents our journey is John 9:3 “…This happened so the power of God could be seen in him.” Being Reece’s mom has given me a new understanding of God’s love. Reece loves everyone he meets and he loves unconditionally. He doesn’t see the color of your skin, skills or abilities, or wealth, he just sees people to love. I want to be more like Reece and now I know the lesson I was destined to learn from having a child with Down syndrome. I’ve had many people tell me they didn’t know anyone with or anything about Down syndrome until they met Reece. I want to share my story so others know that Down syndrome is not something to be feared. Currently, 92% of pregnant mothers who learn their baby has Down syndrome choose to abort their unborn child. This heartbreaking statistic must change. So, I will continue to share my story so future mothers of children with Down syndrome will choose life!
Today, Reece is a thriving, energetic, nearly four year old boy! His development has far exceeded our expectations. He is playful, loving, compassionate, and we are enjoying watching his personality emerge. He loves animals, Mickey Mouse, swimming and baths, French fries, and books. He just completed his first year of preschool and the growth we have seen in the last year is incredible. His most noticeable developmental delay is speech, but sign language has enabled us to communicate with him while he continues to learn to speak. Reece receives weekly therapy and we are beyond grateful for the support we receive from the State. Early on, Jeff and I decided we would not put limitations on Reece. We are committed to encouraging him to do anything he wants to try and we are ready to be his biggest cheerleaders.
I didn’t feel it then, but I feel it now. To me it feels like bravery slowly crept up growing stronger as the years of being Reece’s mom go on, but I know the real source of bravery comes from God. Only He could be the one to change my stubborn heart and give me the strength to face what I thought I wasn’t capable of handling.
Bio: Alissa is an Arizona native who is discovering what life is really all about through the world of motherhood. Married to her college sweetheart, Jeff, for nine years, they both love their new title of “parents” to little man Reece, age 3. Alissa is the Marketing Coordinator for Mattamy Homes, a new home builder located in Scottsdale. When she’s not chasing Reece or her two dogs, Rory and Scooter, around, she enjoys spending time with family and friends, writing, crafting, reading blogs and books, and volunteering at her church. Reece was diagnosed with Down syndrome at birth and she hopes to inspire and encourage other mothers of special needs children through her writing. Visit her blog, This Gift Called Grace.