As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.” John 9:1-3
Within about one hour of our beautiful baby boy Hayden arriving on July 19, after a LONG 26 hours of labor, the words “Down syndrome” came out of the resident’s mouth. I honestly don’t really remember what she said or why she thought Hayden had Down syndrome. Was I shocked? Yes. How was it possible that I have a sister with Down syndrome and now I might have a son with Down syndrome? At that moment did I care? Not really. I was relieved and ecstatic that he was finally here. After going through a miscarriage the year before, we just wanted our baby.
I never thought that we, as parents, sinned to “deserve” Hayden’s diagnosis. He definitely did not either. Actually, most days I think “wow, we must have done something pretty awesome to deserve Hayden, to be blessed with him in our lives.”
We are part of the lucky few. I like to say we are double blessed with both Hayden and Angela, my sister, in our family. Don’t get me wrong- some days are harder than others and sometimes our worries are different than I originally imagined- like living through a pandemic with a child with a diagnosis on the CDC’s high risk list. But all parents have their hard days and their worries- typical children or not.
When speaking about the blind man Jesus said “but this happened so that the works of God might be displayed in him.” God presents us all with challenges, with bad news, with hard stuff to remind us of his work. In Hayden’s short 19 months in our lives so far, he has shown us God’s work.
God has given Hayden determination as one of his strengths. Down syndrome or Trisomy 21 is a genetic condition caused by three copies of the 21st chromosome. Typically people have two of each chromosome. Low muscle tone, also known as hypotonia, is one of the many health conditions associated with Down syndrome. This makes it harder to do many things- eating, talking, crawling, grasping, walking- you name it. After Hayden rolled over for the first time at three weeks, I knew he had determination in his heart! We may be on the “scenic route” and it might take him a bit longer to reach milestones but boy is he determined to reach them!
Individuals with different abilities were put on this earth as a reminder that we are ALL unique and have different abilities. We all bless those around us with the abilities that God has given us. At 19 months old, I’m not sure yet what all of Hayden’s abilities are or how he is going to make a difference in the world. But I have discovered in that short time that he is full of personality. And I pray that his smile, laughter and big personality will continue to make friends, family and strangers smile and brighten their days.
Hayden’s diagnosis has shown us that God will always provide. There truly is this Down syndrome “tribe,” the “lucky few” as I referenced earlier. We are blessed to know the parents and families of Angela’s friends who are part of our tribe. Social media has also been a great resource for us. The Down Syndrome Diagnosis Network (DSDN) is the largest national organization that provides support to new and expectant parents with a Down syndrome diagnosis. They do an amazing job of connecting parents, providing support and providing accurate and up to date information to parents, families and medical providers. When Hayden was born we received a “welcome” package with books, a onesie and lots of information. I also joined a “birth club” on Facebook which includes moms of babies born with Down syndrome from July-December 2019. That group has been a lifesaver. They have been incredibly helpful, I love networking with the other moms and I am able to provide some advice from growing up with Angela.
March 21 is World Down Syndrome Day and we would love for you to celebrate with our family. It is an official day to spread awareness about Down syndrome and how awesome individuals with Down syndrome are. A simple way to join in the fun is to “rock your socks” by wearing your craziest pair of mismatched socks. Why do you ask? Because chromosomes look like socks and it allows us all to celebrate our differences! We would love to see pictures of all of our Derry friends. Our family will be celebrating by wearing our mismatched socks, our “Hayden’s Heroes” t-shirts, walking a virtual 5K and sharing how much money we will be donating to the Down Syndrome Diagnosis Networks through various fundraisers.
The best way to honor individuals with Down Syndrome and celebrate is to become more informed, check-out the DSDN and PLEASE ask us questions!! If you do not already, follow me on social media and I will share facts leading up to WDSD (Facebook: Lauren Basti Talhelm; Instagram: t21.mama.and.son). We look forward to celebrating our gifts from God together!
Click this link for information about the Down Syndrome Diagnosis Network, links to my social media accounts and our various fundraising efforts.