There were suspicions in utero that their baby would have Down syndrome, but they didn’t know for sure until he was born. After a lot of study and then ultimately meeting their son with Down syndrome, they have decided Grayson is perfect the way he was born.  

 

The NIPT (Prenatal) Test

Matthew and Tamara are the parents of Grayson, their eighteen month-old baby boy who has down syndrome.

Before his birth, the couple was excited to share the news that they were going to have a baby with family. Around this time, Tamara took an NIPT test, which would both reveal the unborn child’s sex and declare any genetic inconsistencies the baby had. Matthew and Tamara were not aware of the latter possibility, so they were completely taken aback when they found out their child was very likely to have down syndrome. For a time fear, hurt, and sorrow replaced the excitement.

“I think my immediate fear was that we were going to have a child with a disability until the day that we died, and it also worried me about who was going to take care of my child when we were not around,” Tamara said.

Matthew expressed, “Obviously we don’t know how to care for a child with Down Syndrome. I was more worried about my wife, her feelings, her fears and her emotions about the diagnosis.”

Preparing for the Birth of Their Child with Down Syndrome

Before they found out that Grayson could have a disability, Matthew and Tamara were already in love with him. “We [decided we] would keep him no matter what. I heard his heartbeat before we took the test, and I would always think about that if we aborted him. We couldn’t fathom it. We see how much joy they bring to their families, and they can have completely normal lives. They can be successful and fulfill their dreams just like any other child.”

Finding out that their unborn child was likely to have Down Syndrome caused Matthew and Tamara a lot of stress, especially since they didn’t have “him to love [yet],” as Matthew said. However, they felt much more prepared for taking care of Grayson than they would have felt if they had found out about his down syndrome after he was born.

They scoured the internet for information on down syndrome and other people who were going through similar things. They consulted with a genetics counselor. It was hard for Tamara to talk with other people who just didn’t understand what they were going through on a personal level. Finding organizations like Orange Socks has helped them feel less alone in this trial of unknowns.

Parents Tell What it’s Like to Have a Child with Down Syndrome

Since they welcomed Grayson into their lives, Tamara and Matthew have been beyond happy. There were some difficulties in his growth in the womb, forcing the doctors to perform an emergency C-section six weeks before Grayson’s due date, but the procedure was successful. One week later they confirmed what they thought: he had down syndrome. Though it was hard, Tamara realized he was everything that she needed.

“He’s the best,” said Tamara, “…this kid is always happy.”

Grayson had only one cold during the first year of his life, and is very healthy in general. Tamara and Matthew have sought out a lot of information on how to best raise their son with down syndrome, and they have been very happy with how their son is developing. He has exceeded the doctor’s expectations.

Advice to Other Parents of Children with Disabilities

“When you see people with kids with down syndrome you’re going to hear them say things like ‘I wouldn’t change a hair on their head,’ or ‘I would do this all over again,’ and you will think that we’re all crazy. But I promise you that you will get to the place that we are at. Grayson having down syndrome is a part of who he is. You are going to realize that this was the child that you were supposed to have, and that you’re there for a reason. I promise you that you will probably learn more from him or her than they will ever learn from you…You’re going to get to the point where this is your greatest blessing,” Tamara said.

“If we could have any control in this life, we wouldn’t change one thing.” Matthew said concerning his son.

To Tamara and Matthew, Grayson is a blessing they would never want to live without. They love Grayson because of his disability and because he is their child.

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