A Down Syndrome gift, Julia shares Moses’ story….
I am sitting here now with tears in my eyes because I have been so changed by my son. Changed for the better. But it is still difficult to revisit that hard time in my life and go back to those emotions.
Jared and I got married young. I was actually planning my high school graduation party and our wedding at the same time.
I’ve always wanted to be a wife and a mother. I felt for most of my life that my calling was to raise a family and love on my children. This may not sound very ambitious but it’s what I’ve always wanted.
Jared and I planned on waiting 2 years after getting married before having children. Secretly I hoped for sooner. We had been married for 5 months when I became pregnant the first time. We were shocked but ecstatic! At 6 weeks along I miscarried. we had not planned for this child but losing him/her felt like a big loss for us. So change of plans, we didn’t want to wait 2 years anymore. We wanted to start a family right now. 3 months later we found ourselves pregnant again, we were overjoyed!
My pregnancy seemed to fly by. I am the type of person who worries about everything. So to ensure my baby would come out perfectly healthy I steered clear of nausea medicine and tried to go by the book on foods to avoid when pregnant.
More than once while I was pregnant Jared and I talked about what it would be like if we ever had a child with special needs. We even talked about having a child with Down Syndrome. Never dreaming that the very baby in my belly had it. In a way I think God was preparing us.
When my midwife offered the ultra sound to look for signs of Down Syndrome we declined. It wasn’t going to be covered by insurance. We were sure he didn’t have Down Syndrome. Regardless of the results, we knew we would never terminate the pregnancy, so it didn’t matter.
Still, throughout my pregnancy, I was scared something was wrong or would go wrong at birth. No matter what I did as my due date approached I still felt unprepared and nervous.
When it was time Moses came quickly. Six hours of hard labor, four at home and two hours pushing in the hospital. At 8:33am on February 28th, 2016, with the sun shining through the windows, my husband, my sister and my mother gathered near, my sweet Moses James Paden entered the world. He was perfect. 7lb 7oz, 20″ long with the cutest sprout of hair on the top of his head and the most perfect chubby cheeks.
I couldn’t believe it! I had just given birth to a healthy baby! In fact, the first thing I said next to “Give him to me” was “Is he ok? Is he breathing?” I was assured that he was and mentally I let out the breath of fear that I had been holding in for 9 months. I did notice his face seemed to be very round and his puffy eyes had an almond shape to them, but I chalked that up to him being brand new.
I don’t remember how long it was before my midwife told us of her suspicions. I was sitting in the hospital bed with Jared next to me while I held Moses. We were alone in the sun filled room when Stephanie (my midwife) came in. She sat down on the side of the bed with a kind but cautious look in her eyes. I don’t remember word for word how she told us but I do remember her showing us the physical traits that are common with Down Syndrome. The single line across the palm, the low set ears, the almond shaped eyes, the toe gap. All of these things that are so dear to me now but made my heart sink further as she pointed them out to us.
I went numb.
I knew she was right.
I feel terrible how feeling these things but in my head, I thought, “It was too good to be true.” I didn’t know what to think or feel. I felt guilty because in my heart I wished with everything in me that she was wrong. I knew nothing about DS. I had never even interacted with someone who had DS. I felt sadness and fear because all of the sudden every dream I had for my child was being threatened and on the verge of being taken away. I don’t remember what my verbal response was. I think I just said okay and tried to seem positive but in my head, I thought, “It was too good to be true.”
I think I just said okay and tried to seem positive but in my head I just kept repeating, “Please God no.”
Though Moses did have many of the common features, they were very faint. My husband even had a line across one palm and a wide gap between his toes. Maybe these traits were just hereditary? A blood test was ordered and we would have to wait 2 weeks before finding out for sure. That first night at the hospital I couldn’t sleep. I held Moses in a chair in the corner of the room and cried while Jared slept. I whispered to Moses that I would do my absolute best to love him with all that I had. I did love him. I loved him with a desperate love that ached inside of me. I was so afraid for him.
We were out of the hospital after two days. The next couple weeks were a blur of agony.
Nothing was like I thought it was supposed to be.
Almost as soon as we were home a deep postpartum depression came over me. I was constantly on the verge of tears except for when company came to see the new baby and I had to put on my happy face. Every time someone would gush over him and say how perfect he was I would think, “But you don’t know he might have DS.” Jared and I went in between talking ourselves in and out of believing that he had DS. We looked up different facts about DS and would compare Moses to pictures of other children with DS.
I am so sad and ashamed to admit that during those 2 weeks of waiting I would lie in bed at night pleading with God to heal my child and take it away. That sounds absurd to me now. Heal him of DS? Down syndrome is truly beautiful. I write that now fully knowing and believing it. It hurts to know that at one point I viewed it as something like a disease.
I remember so vividly the night we got the call. We were sitting on the couch in our dimly lit living room when the phone rang. We both froze when the caller ID said it was Stephanie. I will forever be grateful to Stephanie for taking the time after work hours to call us personally. When she confirmed Moses had Trisomy 21, Down Syndrome, it was all I could do to keep my voice from cracking as I said okay, thanked her for calling and hung up the phone. I turned to Jared and we held each other and wept. We wept because it felt like we were saying goodbye to the child we had dreamed up in those months that he was forming inside of me. We wept because of the unknown. We wept because we knew that now Moses had to go through life being labeled as different.
The next day I canceled plans with friends that were supposed to come see Moses. Instead, I spent the day in bed holding my baby and crying for his sake. I only left to grab food, use the bathroom or change Moses. In between the long stretches of silence I would burst into tears and cry out “My baby, My poor baby.”
I honestly don’t remember very much of what I felt in those weeks. I was in survival mode. All I knew is that I loved Moses and that I was going to press on and just get through it.
When confirming the news to our family, we put on a positive face and pretended that we had already accepted it. I think this is why many of our family members didn’t give to much of a reaction. This hurt our feelings and somehow made us feel like we had to be reserved.
However, looking back I know that wasn’t the case. I think things would have been different if we had been vulnerable and allowed our family to see our pain. I know they would have been right there if we had let them.
When Moses was a month old, a heart murmur was found. A heart echo was ordered and we learned that he had congenital heart disease. He had 6 holes in various places of his heart, a cleft mitral valve, and as we would find out a year later, something called DCRV. This came as a shock to us because in the hospital they told us his heart looked good. We were lucky how ever because although these defects needed closely watched, his body was functioning fine and they saw no need to rush surgery. Moses did go on to have open heart surgery at 15 months old. It was terrifying but the Lord walked through it with us it and Moses did great!
But that night after we learned of the congenital heart disease I broke down. I cried until my stomach hurt. I told Jared that
“I’m too young for this”.
“I’m only 20 years old”.
“I wasn’t supposed to have a child with DS and a life threatening heart condition”. I said
“It’s too much I can’t do it”. “I love Moses more than anything but I wasn’t meant for this”.
Looking back it stings to remember that because now I know this is exactly what I was meant for.
It wasn’t until Moses was about six months old that I began to find acceptance and peace.
Up to that point Jared and I’s relationship was struggling. Other than the random outburst of pain, we had never taken time to really process the diagnosis together and be honest about our emotions. We both bottled up how we felt and tried to pretend it didn’t bother us anymore because we loved him so much.
I was still suffering from PPD. Most days I was just trying to get through the day. I was impatient for time to pass and for Moses to get older so that I could just get past that season of my life and feel right again. I had heard so many people say having a child with DS was a big blessing in their lives and I wanted that. I tried to convince myself that I felt that way, but in my heart of hearts, I resented it. I would even say to God, “Thank you for giving Moses DS” in hopes that I could force myself into being glad about it.
I wish now that I hadn’t spent so much of my time waiting for the future. I was on auto pilot and I feel like I wasted the first six months of my son’s life.
I believe true healing came when I read the book Bloom: Finding Beauty in the Unexpected–A Memoir (P.S.). It was recommended and sent to me by my sweet sister in law Meghan. The first chapter in the book is about the birth story of her daughter Nella who has Down Syndrome. She writes about her honest and raw breakdown at the news of Nella’s diagnosis and how she wept for days.
I had a hard time reading in the beginning because I found that it made me angry. I realized I was getting angry because I was jealous of her. She wept and felt sorry for herself for days and her family wept with her. I was jealous because I felt like I had to give off an air of indifference about it. Like I had to stifle my grief and pretend it didn’t bother me because I wanted to be the perfect picture of a mother who loved and accepted all.
After I made that realization I decided to let go of my pride and guilt and let myself feel everything. I let myself grieve. I let myself feel angry. I let myself not be okay with it. I even let myself feel sorry for myself. I admitted to God that I was not happy. That I was barely making it. That though I did love Moses with everything in me, I indeed was not thankful that he had DS. As if God didn’t already know that!
I found that when I let myself truly feel the pain, with it came healing. It was like a burden had been lifted off of my chest. The burden of not letting go. I felt like I could finally take a deep breath and move forward.
After that, Jared and I were finally able to process it together. We spent several nights going over everything. Speaking honestly and openly about our fears and pain. We held each other and we laughed and we cried. It felt like the heavy fog that had settled over our marriage was lifting. It felt like we could finally see each other again.
Slowly, but surely, I began to wake up to the gift I had been given. Yes Moses had DS, but he was still just a child. My child. I began to look at him and just see him. Instead of being afraid of the future and mourning the things he might not do, or the way he might be perceived by others, I started dreaming of the things he might do and the way he would impact the live of others.
So here we are, almost a year and a half after Moses’ birth. Today when I think about Down syndrome I no longer cry tears of sorrow but tears of gratitude. I’m so glad that God knows better than me and that he gave me the child he did. I am proud of my son. I am proud that he has DS. It really has been the biggest blessing in my life. I have been changed for the better. Moses has brought beauty, growth, purpose, and passion into our lives and I would not change him for the world. I would only change the world for him.
Julia and her husband Jared have been married for 2 1/2 years. The couple lives in Fort Wayne, Indiana with their 1 1/2 yr old son, Moses. Julia is a stay at home mom who loves to paint with water colors, and spend time with her sweet little family. She is on a mission to advocate and spread awareness about DS for her son and the other beautiful people in the Down syndrome community. You can follow Julia and Moses on Instagram @Julia_Paden_