The most important thing in life
The arrival of a child with Down syndrome challenged a young family and helped them grow
By AnneMarie Kelley
When our first child Liam was born, he began teaching us to let go of our plan and say “yes” to God’s plan. His labor was so fast that he was born before my husband Adam could arrive at the birthing center after traveling for work. After Adam’s arrival, we discussed with our midwife the possibility of him having Down syndrome and were transferred to a NICU at a local hospital for further testing and monitoring.
We called our parents to ask them to come. Their love was so great; our parents traveled to be by our sides during some of the most difficult days in our lives. After a few days in the NICU, the genetic testing confirmed that Liam has Trisomy 21, more commonly known as Down syndrome.
At one point, Adam and I were eating in the family waiting area. We started talking with a mother of another baby in the NICU. She asked us why our baby was there. We explained that he was diagnosed with Down syndrome and needed to be monitored.
“Oh, couldn’t they test for that?” she asked, sounding confused.
“Yes, but we chose not to do the testing,” we explained.
“Well, I bet you’re kicking yourselves now! Aren’t you?” she replied without much hesitation.
“No. We love him so much just as he is. We’re just praying he is healthy.”
As she listened, the woman’s initially shocked facial expression softened. She nodded and agreed, “Well, you’re right. You love your kids no matter what.”
What we said was true; we loved Liam immensely. Like any new mother, I could not stop staring at him. Everything about him was breathtaking. But the grief that I felt as I processed Liam’s diagnosis of Down syndrome was so overwhelming and so confusing.
I worked as a special education teacher up until the day I gave birth to Liam and always felt drawn to work and be with people who have cognitive disabilities. So why did I have such pain upon learning my own son would have significant special needs?
I would constantly say to myself: “Do NOT let all this steal your joy. Enjoy these first few days with your baby. You will never get these moments back.” After 10 days, we made it through our NICU journey and were able to finally go home.
Looking back on this time, I can clearly see how God was with us. During Liam’s first month of life, Adam and I had some of our deepest conversations. We opened our hearts completely to one another, allowing ourselves to be dependent on the other and simultaneously support each other.
We soon discovered that we had to be free to share any emotions, thoughts, questions and fears without judgement from each other. One of us would share a worry about the future: “Will Liam be bullied? Will he have friends?”
We learned that the most important response was to just listen and to only respond in love. We had to talk freely, and we slowly began to understand our inner conflicts. This could only happen if we each felt totally loved by the other. We had moments when we irrationally wanted to blame ourselves or each other, but thankfully, experiencing God’s unconditional love through each other kept these temptations at bay.
The more we shared, the more we were able to understand the reasons for our sadness and grief. Liam was not causing us to suffer. As Psalm 139:14 says, Liam is “wonderfully made” just as God intended. We were having such a hard time loving and embracing this situation because we misunderstood what God was calling us to do as parents. We were hurting because we had to let go of our own ideas and perceived needs.
Each of us had an image of what parenting would be like, and with the diagnosis, we felt like we had to let all of these ideas go. We were mourning the loss of our own vision of what our child would be or could do. We had subconsciously already created so many expectations for Liam to fulfill before he was even born. With this realization, we also understood that none of the things we thought we had to lose were important.
I wrote the following when Liam was just a few days old: “Adam and I keep reminding each other that the most important thing for anyone to do with their life is to know, love and serve God. Liam’s Down syndrome will not change that at all. In fact, he will probably be able to love better than any of us. Always in the present moment and seeing people with new eyes. I am excited to see how much I can learn from him. I can’t believe how much my heart has already grown in the past few days since his birth. He’s already helping me to be the person God is calling me to be, so I know he is the most precious blessing.”
Three and a half years later, Liam continues to bring us closer to God and reminds us to embrace God’s timing and plans. After years of hard work and many therapy sessions, Liam is starting to walk! We are praying that the talking will come next, while remaining patient with the pace of his development.
Liam absolutely loves swimming and has made great progress with aquatic therapy. He recently rode a horse for the first time and enjoyed it so much that we hope he can do it more regularly. He loves being outside on his swing set and bouncing on his trampoline. His favorite toys are his baby doll and stuffed clown. Like any big brother, he does find pleasure in pushing his younger brother’s buttons. However, he gives the best hugs; his smile and laugh light up any room.
When I get frustrated or find myself focusing on what he cannot do rather than what he can do, I remind myself what Liam taught us in just his first week of life: the most important thing for a person is to know, love and serve God.
We do not gain value through our accomplishments. Everyone already has immense value because we are the children of God.
Our number one job as parents is to help Liam experience God’s love in our growing family. Liam is a wonderful big brother to Joseph and will welcome his new little sister soon!
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