Down Syndrome makes family slow down, enjoy achievements

Jana Mathia, Gazette Reporter | Mar 29, 20180

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down syndrome awareness

-Jordyn Cook photo

From left to right, Cody Meserve, Missy Repp and Jordyn Cook sporting their “I love homies with extra chromies” shirts.

“Kids grow up so fast” is a saying most parents can relate to. But the Meserve family of Endicott has an exception to that.

That exception is their five-year-old son Cody who has Down Syndrome. March 21 was Down Syndrome Awareness Day, and Cody’s teachers celebrated with special “I love homies with extra chromies” t-shirts. “Extra chromies” refers to the fact people with Down Syndrome have an extra chromosome and “homies” is slang for home-boy.

The Meserves get a chance to celebrate a lot with Cody, not just the one day.

“We’ve learned to slow down a lot,” said Cody’s mother, Pam Meserve. Since it takes Cody longer to reach milestone accomplishments, they celebrate them more and have more time in which to celebrate.

“Finding out was a shock,” Pam confessed. The couple lived in Endicott and already had one son, Marty.

During her pregnancy for their second child, a routine blood screening came back odd. While they did not think anything of it, they still went to Spokane for the follow-up testing which was inconclusive. More testing followed. All the years before Pam had said she would not do the extra testing, but by this point she was freaking out and wanted to know for her own peace of mind.

“Those 10 days were torture,” she recalled of the days waiting for the results of the amniocentesis test.

On Aug. 10, 2012, she received the call: Cody tested positive for Down Syndrome. She was baby-sitting at the time with the kids at the table eating lunch. Her husband Dana was out driving a combine. The geneticist asked if she had any questions.

“How can you even have any questions?” she said. After the call she went to her room and bawled.

In addition to being shocked, they grieved for the future they had imagined for their child. There was shock and a lot of uncertainty. They were concerned about moving and where they would send him to school.

“We made it a much bigger deal than it was at the time,” Dana said.

Then they met with the geneticist who told them, “You’re going to have a baby.” That helped slow things down and bring their focus back to the here and now.

Pam went to two ultrasounds a week to monitor Cody’s growth and development. They did an in utero echocardiogram to make sure his heart was good.

“I’m just amazed at modern medicine,” she said.

During a routine visit at 35 weeks, the doctor suggested they bring Cody early.

Like, today.

Pam does not know what prompted that response, but she trusted his judgement and quickly came to appreciate that decision She was put on a monitor that measured Cody’s heart rate.

Dana had left to take their other son Marty back to Endicott.

While visiting with a nurse and waiting for Dana to return for the c-section, they heard the baby’s heart rate drop, then come back.

A little later, it dropped again.

The doctor came in and it dropped a third time.

She was immediately taken into the operating room for the c-section, although it was about three hours earlier than planned.

Cody was born at 6:30 p.m.

The first 39 days of Cody’s life were in a neonatal intensive care unit. Children with Down Syndrome have low muscle tone, so he could not suck, nurse and swallow. He had to be put on a feeding tube at one point. Pam credits one of the night nurses with working with him to be able to nurse from a bottle.

Pam stayed at the Ronald McDonald House the whole time to be near him.

“We couldn’t have done it without that,” she said of the facility.

When they returned home, Pam tried to keep Cody on the same schedule of feedings which made her get up every hour and a half until she slept through her alarm. Cody had slept through it too and she realized it was okay.

Cody has continued to grow and develop at his own pace. Pam noted that children with Down Syndrome have no average development scale. Each develop at their own pace in the different areas. Cody never crawled, but would scoot around on his rear,―something they learned is common from other Down Syndrome parents. When he did walk, he would always hang onto someone’s finger, even when he did not really need to. Then, one day, Cody decided he was ready to walk on his own and that was it.

Pam and Dana said they are blessed because they can enjoy a special connection with their child longer. They had a change of mindset to enjoy whatever stage he is in and not be frustrated that he is not at certain points.

“This is Cody,” Pam said.

They are also glad it worked out they were able to stay in Endicott. When Cody was a baby they worked with and received a lot of support from Boost Collaborative.

“That is the best thing around,” Dana said. At first they would go to Pullman for therapy visits, but Cody would not do anything. Then Boost was able to get the therapists out to their home, and Cody started progressing with them. Boost also introduced them to Down Syndrome Connection. While they are not able to make a lot of the meetings, it has been good to meet other families living with Down Syndrome.

When Cody turned three he started pre-school and received his therapy through the school.

“The school has got a very good system going on right now,” Dana said. Pam added they are “so blessed to have Missy (Repp)” who is the resource teacher at Endicott school. She has started working with sign language for him and Pam so he can communicate his needs; a lack of which can lead to behavioral issues, Pam noted.

“We love that the kids at school love him too,” she said. The other students support and love Cody, and if someone does tease him, there are a lot of other kids who stand up for him.

If that will continue when he is a teenager, they do not know. There are a lot of unknowns about Cody’s future, and their’s. Pam and Dana know theirs will not be the typical road. Now they have to plan for retirement that includes Cody and caring for him even after they are gone. While they know they can not rush anything with Cody, they still have to think about the future and plan for it because it can not be ignored.

While physically five, Cody is closer to two or three developmentally.

The development delay also means his interaction with eight-year-old brother Marty is not typical of two brothers at that age, but Pam said Marty is a good helper and brother. He had to wait for Cody to be able to play with him and they play different games than other brothers, but Marty doesn’t know any different. Cody is just his brother.

“He’s not as annoying as he was when he was like three,” Marty said in typical big brother fashion.

Pam’s advice to a parent finding themselves in the same situation as them is to not look up things on the internet.

“You’ll freak yourself out,” she said.

The same can be said for almost any parent with a special needs child.

“They’re still kids,” Dana added.

Focus on things as they come instead of looking so far ahead, they advised.

“Don’t rush things. Cause you can’t,” he said.

Even among other children with Down Syndrome, there is no normal or average development.

“They’re going to hit the milestones. Just at their own pace,” Pam said.

Common things they have learned Down Syndrome children do have is a love of dancing and a generally happy demeanor.

“Cody tends to help lighten the mood around here,” Dana said. He can still be difficult, stubborn, and grumpy ―especially when mom is around,―but his smile lights up a room and brings joy to many people around their home and community.