Microcephaly, Cerebral Palsy, & Epilepsy: This Is Our Story
When Annette and Kenneth Jones welcomed baby Annabelle into the world 11 months ago, they took nothing for granted. For Annette has a 20-year-old son, Martin, who has microcephaly, cerebral palsy, and epilepsy. Kenneth who is from Texas became a dad for the first time at 18.
“We sometimes sit and stare at her for hours,” smiles proud dad, Kenneth, Martin’s full-time carer. Annette brought Martin up on her own until meeting Kenneth online in January 2012. They married within the year, with Kenneth selling his house in North Carolina, and moving to Portlaoise to live with Annette and Martin.
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“When Martin was born, I knew something was wrong because of the small circumference of his head. When he was three-months-old, he saw a neurologist at Our Lady’s Hospital for Sick Children, Crumlin,” Annette recalls.
“He said that Martin was physically and intellectually disabled and that because of his condition, he would be cross – he had colic until he was eight-months-old. I remember saying to myself: “Well, I’m going to make him happy."
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“Not a lot was known about microcephaly at the time. I read that children suffering from it could have a lifespan of around two. I tore up the paper and vowed that I was going to take one day at a time.”
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Martin didn’t have the milestones that Annabelle is reaching. “He didn’t crawl or sit although he could kick. Initially, he could drink a bottle and eat liquidised food but he has been PEG-fed for the last eight years,” Annette outlines.
She returned to education, working on a FAS scheme before training as a Special Needs Assistant. “Martin attended a special school and my mother looked after him.”
Annette was 23 when Martin was born and a combination of love and tenacity saw her carve out a future for herself and her son. “I just thought ‘ I want to do everything I can to help this little person who is so placid, happy and reactive.’”
Kenneth, a quality control technician, had never heard of microcephaly. “On our third email, I explained that I had a son in a wheelchair, with the condition, and that we came as a package,” Annette says. “Kenneth’s response was fantastic. On our second Skype meeting, he read a story to Martin.”
Their whirlwind romance saw Kenneth spend his 40th birthday in Ireland with Annette and Martin. Annette also travelled to the U.S. to meet Kenneth’s family, and they married on December 15, 2012, with Martin as best man.
“We started talking about having a baby in our first year together but my worry was ‘What if the baby is sick?’ Kenneth threw in humour which softened the fear. Then a sermon about Daniel in The Lion’s Den at the church we go to in Newbridge, spoke to me, particularly the line ‘I will not bow down.’ I said that even if our baby was sick, we wouldn’t let fear dominate.
“We went to two doctors who told us that our chances of having a child with disabilities were very low. Then we went to my GP. She told us to go home and get busy. I was pregnant within two weeks.
“Because of my age – 42 - and my history, the GP referred us to the Midlands Regional Hospital, Portlaoise, early. I had an anomaly scan and was assured that everything was fine,” Annette says. “However, there were fears and worries around every corner,” remembers Kenneth.
A six-week family holiday in Spain helped relax everyone. Annette prepared a birth plan, asking that the baby would not be taken out of the room, as happened with Martin.
“The consultant induced me as the baby was showing signs of distress, and it was a vacuum-assisted delivery. When I saw Annabelle, I thought the bruising on her head was microcephaly. However, the doctor and Kenneth assured me she was perfect. This time, I was able to breastfeed which was wonderful.”
Watching Annabelle thrive is an emotional experience. “I cried when she first clapped her hands. Even when she fell over, it was all new as Martin never fell, and was in a wheelchair from the time he was one,” says Annette.
“I was a bit scared giving Annabelle solid food – I blended it too much. But having almost lost Martin on his 18th birthday due to a serious chest infection, and being older parents, we’re generally relaxed around her.
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“We have the same public health nurse for her as I had from Martin, who was delighted for us. We’ve taken her advice on everything, including establishing a sleep routine. Annabelle shares a room with Martin and loves interacting with him.
“I feel so sad that Martin lost out on all the little things that Annabelle can do. I feel almost guilty to be taking so much joy from Annabelle’s development, but Kenneth told me never to feel guilty. We’re so happy that Martin doesn’t have to go to a day centre, but has services coming to him because of his complex needs,” says Annette.
They form a tight family unit, enjoying hiking trips and holidays. The next challenge is to tackle Martin’s scoliosis. Meanwhile, it’s back to Annette’s mantra - one day at a time. “We try to stay focused on the value of life; not getting stressed, and thinking outside the box. Things can change in the blink of an eye.”