Newton County has many heroes. Some protect us from harm, others fight for our freedom. And, in a lovely home at the end of a cul-de-sac, lives another Newton County hero — mother of four, Kelli Hopkins.
Kelli and her husband Mike have three girls, Mary Elizabeth, 17; Michala, 12 and Marlee Anne, 8; and a 2-year-old little boy named Abe, but what makes their family unique is that Mary Elizabeth, Michala and Abe are all special needs children with severe medical conditions.
When Kelli was pregnant the first time, she had no idea that anything was wrong with Mary Elizabeth, but three days after she was born with her umbilical cord wrapped around her neck, she had her first seizure. When she was 13-weeks-old, Kelli laid her down for a nap and got halfway to the kitchen then decided to turn around.
“I just got this sick Mommy feeling,” she explained. “When I went back she wasn’t breathing.”
On Mary Elizabeth’s first birthday the doctors called with the news. She was diagnosed with mitochondrial encephalomyopathy, in layman’s terms, Mary Elizabeth’s brain doesn’t tell her muscles to work.
“As time went by, every milestone that she missed, I grieved a little bit more because I realized she might never be able to do some of these things,” said Kelli.
“When we talked about kids, we always thought that we would have two typical kids — we probably said normal kids at that time; we don’t even know what that word means now — and we would like to adopt two special needs children. But God heard that and he had other plans for us,” said Kelli.
Doctors told Kelli and Mike that Mary Elizabeth’s condition was a sporadic mutation and that the chance of them having another child with mitochondrial disease was just like any other couple having a special needs child.
When Michala was born she appeared to be fine, but Kelli said she could tell there was something not quite right with her eyes, even though no one else seemed to notice. She also had a dark spot on her foot which was turned in just a little, but there were no rush trips to Egleston for Michala and she came home from the hospital days after being born.
At around 3-weeks-old Kelli was feeding her in the middle of the night and noticed what she thought may be a focal seizure (where the eyes will jerk a bit), but decided she was imagining things. The next night around the same time, the same thing happened; she didn’t mention it to anyone at the time.
“It was kind of like, if I didn’t vocalize, it then it wasn’t happening,” said Kelli. “But the next night she was in her bouncy seat and I was on the phone and I heard Mike say ‘what is that?’ and I knew right then that he had seen it too. That it was really happening.”
A neurologist confirmed that Michala was indeed having seizures, and she was eventually diagnosed with Aicardi Syndrome which affects only 300-500 girls worldwide. The middle part of Michala’s brain that connects the left and right side is missing and she also has daily seizures and vision trouble.
Also, the dark spot on her foot began to grow larger and fill up. When it was the size of a golf ball she was taken to Egleston to have it drained, but the next morning it was back. The family ended up at Boston Children’s Hospital where they were told it was found to be angiosarcoma cancer.
“We went to Egleston to have it removed, and after the surgery the doctor came in and said they got it all. Everybody in the room was having a party except for mom. I just knew it was still there,” said Kelli. The next week they got the call that the cancer was still there. When Michala was 14-months-old her leg was amputated through the knee.
Once again the Hopkins’ were told that Michala’s disease was not related to Mary Elizabeth’s and the chance of their having another child with special needs were not any higher then any other couple.
“I wasn’t scared [when pregnant with Marlee Anne]; I had this weird sense of calm come over me. It was like, no matter what happened everything was going to be OK. When she was born we looked her over head to toe, every milestone she hit was huge, and early on we knew that she had an unusual spirit and was incredibly loving and nurturing.”
By watching Marlee Anne, Michala learned to pull herself up on the couch and drink from a sippy cup. Once, when Michala was having a particularly hard seizure, Kelli said that she threw her hands in frustration and walked out of the room.
“Just a minute later I heard Marlee Anne — she was maybe 4-years-old at the time — in there praying with Michala. In just a minute, Marlee Anne came into the kitchen where I was and said ‘Mommy, do you want to go pray for Michala with me?’
“She’s a constant reminder,” said Kelli, starting to cry, “Of how I should look at every day. And I think, probably at least once a day, what if we had said ‘no God, we don’t want anymore children?’ People often look at our family and see them [Mary Elizabeth, Michala and Abe] as a burden, and there are more blessings from them than I ever expected to receive in my life. Being their mother is a challenge,” she said. “But it is no different from any other mother. Our activities are just a little different.”
Baby Abe was not a planned pregnancy, but Kelli said that it was a great one. At 28-weeks along she found out that he had Clubfeet.
“You would have thought they told me my child had a terminal illness,” said Kelli. “Here I am with Mary Elizabeth and Michala and all these challenges but Clubfeet hit me so hard.” With the exception of his feet, doctors felt that everything else was going well with Abe. They went in to the hospital to have him on Valentine’s Day.
“The delivery went fine and finally I have a little boy that immediately steals my heart,” she said.
On the second day at the hospital nurses came in to get Abe and give him a bath because the Hopkins were checking out the next morning. Within five minutes of their leaving with him, Kelli heard a Code Blue called.
“I knew without question it was him,” she said.
They spent the next five weeks in the Neonatal Intensive Care Unit with Abe. He is still undiagnosed but has seizures constantly and is on a feeding tube and oxygen at all times.
When asked if she ever wished things were different, Kelli didn’t pause before saying that she did.
“Just the other day we were out of town and I was watching Marlee Anne swim in the pool and I wished that I could have my 17-year-old daughter lying out on the lounge chair beside me while Abe and Michala swam in the pool with Marlee Anne. Instead they were inside the room with their dad,” she said.
Kelli said that it’s the simple things that so many people take for granted that she misses the most. She said that she would love to go to church as a family, but three vocal children, who are not aware they have to be quiet in church, makes that difficult. Additionally, running to the grocery store when they run out of milk, is a daunting task.
“I have to call somebody and I hate that,” she said. “I hate depending on other people for little things like that. So in that way, I wish things were different. I wish we could just all get in the car and go to Chick-fil-A for a sandwich and sit in there and eat it, but how do you do that?”
She said the family is very involved in the development of Chimney Park, which would allow them to all go somewhere together and it wouldn’t prove problematic for the wheelchairs her children use.
“But the three of them have taught me an unconditional love that I otherwise wouldn’t have experienced,” said Kelli. “Sometimes I wish that my heart didn’t hurt so bad and the longings of wanting more for them were different but I wouldn’t change them.
“And to other moms I would say, cherish that smile. When your child comes up and hugs you and tells you ‘Happy Mother’s Day’ and ‘I love you Mommy,’ appreciate it. Because if I could hear anything from those three children,” she said crying, “I would choose to hear them tell me that they know, without a doubt, that I love them. I want to know that they know that. So make sure that your children know that you love them. I don’t know that there’s anything worse than a child not being loved.”