Minnesota woman, husband raising five children with Down syndrome
EAGAN, Minn. -- Leah Spring is at the helm of her home: the kitchen island. Tonight's menu is summer-sausage-and-cheese sandwiches and pineapple-mango fruit smoothies. Inside this yellow house on the top of a hill in Eagan, Spring, 47, lines up t...
EAGAN, Minn. -- Leah Spring is at the helm of her home: the kitchen island.
Tonight’s menu is summer-sausage-and-cheese sandwiches and pineapple-mango fruit smoothies.
Inside this yellow house on the top of a hill in Eagan, Spring, 47, lines up the slices of bread and listens as two of her five at-home children work on her Mother’s Day card.
“Put: ‘I love you, Mom,’ ” says Angela, 18, as Axel, 14, pulls out the Crayola markers.
“And: ‘I like you, Mom.’
“ ‘You’re my favorite mom.’
“ ‘You’re the best waitress.’
“Put ‘best chef.’
“And ‘best queen of all.’ ”
When the best queen of all is ready to serve dinner, her assistant, Dean Ellingson - otherwise known as Dad - rounds up Abel, 12, and Audrey and Asher, both 10.
Some might look at this family and see five children with Down syndrome.
“I just see kids,” she said.
Hers is a unique family, though, cobbled together through marriage, biology, adoption and prayer.
If motherhood were a play, this would be Spring’s second act.
Spring was 28 years old, busy raising her own two sons and her husband’s two sons - Rob, 10; Noah, 9; Tyler, 8; and Bryon, 7 - when she delivered a baby girl June 6, 1996.
This little sister’s entrance into the world was dramatic.
“Angela was delivered by emergency C-section at the Waconia hospital,” Spring said. “I’d had a lot of trouble with the pregnancy: preterm labor, placental abruption, bed rest. But we never had any indication that she had Down’s. The day before, my doctor had told me that if she was born before 36 weeks, she’d have to be airlifted to Minneapolis. As I was on the table in surgery the next day, before Angela was even out yet, I could hear the helicopter landing. It was so surreal.”
Immediately after Angela was born, Spring began to worry.
“I started panicking because I didn’t hear her crying,” Spring said. “The pediatrician told me it was because they were putting a tube in her but that she was getting pink, that she was OK.”
Spring’s maternal radar soon sounded again, though.
“When I got out of surgery, my family had already seen her,” Spring said. “When they came into my room, I was waiting for the flight crew to finish getting her ready to fly; they were going to bring her in for me to see her for just a second. As my parents and her dad stood around my bed, I asked, ‘How is she?’ and although everyone said she was fine, my dad was crying. I had never seen him cry. I said, ‘Oh, no, she’s not fine - because he’s crying. What’s wrong?’ And her dad said, ‘Well, they think she might have a little bit of Down syndrome.’ That’s what he said, ‘A little bit.’ And just then, they brought her in. All I could do, because she was only 4 pounds and not very much of her was showing, all I could do was turn her hand over and look for the crease.”
A single crease in the hand - compared with a more typical double crease - can be a marker for Down syndrome.
Angela had one crease.
“It looked like the mark of an angel’s touch,” Spring said. “I said, ‘It’s an angel kiss.’ A permanent marker of an angel. That’s the first thing that came into my mind. Seconds later, they took her away.”
Spring did not cry. Neither did her mother.
“Caring for kids with a variety of disabilities had always been an interest of mine, from the time I was about 10 years old,” said Spring, who has worked as a sign language interpreter, a special-education assistant and a group-home caregiver. “So at the time Angela was born, my mom said, ‘Now, everything makes sense.’ ”
Life touched again
Her four boys were grown and Angela was a teenager when Spring’s life was once again touched by Down syndrome.
“A friend of mine was adopting in Bulgaria,” Spring said. “I went along to help. We also visited an orphanage in Serbia.”
By this time, Spring and Angela’s dad had split up. Spring had found love again with Ellingson, who has one son of his own.
“Before she left, I said, ‘Whatever you do, don’t fall in love with any kids over there,’ ” said Ellingson, 58. “We are not adopting. I’m getting too old. We have enough.”
But then …
“She started sending me pictures of the little kids,” Ellingson said. “And I fell in love.”
He sought guidance about what to do next.
“To be honest, I prayed,” Ellingson said. “And I got the answer while I was driving down the road. I was told everything was going to be OK. I cried for 45 minutes.”
Spring felt she already had an answer; it was in the form of a question: “Why not?” Spring asked.
In Serbia, only children with special needs qualify for international adoptions.
For Spring, this was another angelic sign.
“Down syndrome is normal to us,” Spring said. “If there’s a kid out there with Down syndrome that no one wants because they think they can’t handle Down syndrome, well, we can.”
It turns out, Down syndrome was not the issue. “The challenge comes from their institutional behaviors,” Spring said.
The couple adopted their son Axel from Serbia in 2010.
“Axel’s birth family had him until he was 2,” Spring said. “They were encouraged by various people to place him in an institution at that time so he could get services. At some point, they knew that if they allowed him to be adopted, there was a small chance that someone from the U.S. would adopt him. They felt he would be better off in America.
“When he came, he looked like a 4-year-old, and now he looks like a teenager. He had no education at all. Nothing. He was a blank slate. And now he’s reading, and he writes obsessively. He’s fascinated with electronics, and he loves math and science. And he just loves to learn, he’s fascinated by learning.
“We have visited Axel’s family in Serbia, and they read my blog and follow me on Facebook. They just can’t get over the changes in him. He’s a typical, happy young man.
“Is it the best situation? No, the best situation would have been for him to stay with his birth family. But, the way the situation is, we say that we share a kid across the world.”
Next was Asher
The family adopted Asher in 2011.
“I just made contact with Asher’s family in Serbia fairly recently,” Spring said. “He was their first baby; they were lacking in financial resources. Later, I learned that the day we committed to Asher was his birthday; his family was with him that day. They had approved him being adopted; they wanted him out of the institution. His dad found me on Facebook. They can’t believe the difference in Asher, the photos then and now. His words were: ‘So happy to see he’s out of the darkness.’
“When we got Asher, he was in a very dark world, his own little world. He had no facial expression. He didn’t smile. He didn’t laugh. He was just blank. Now he’s a smiley, loving kid. And humor - he’s very funny. He laughs at everything. He’s all boy. He wants to run, climb, jump and get dirty. He lives to be outside because he never got to go outside in the institution.”
Abel & Audrey
Abel was adopted in 2012.
“Abel’s family walked out of the hospital without ever seeing him,” Spring said. “He was an in-vitro baby. In Serbia, amnios are mandatory for women over 35. His mother was 40. But, because she had fertility problems and he was in-vitro, because there was such a high risk for miscarriage, they gave her a waiver. When he was born, the last thing they wanted to deal with was a kid with a disability. The first time his mother saw him was at the adoption ceremony when he was 10 years old. They told us she was watching from somewhere in the building and that she couldn’t believe that not only would somebody adopt him but they would come from the other side of the world to get him.
“Abel was a feral child when we met him. He was absolutely like a wild animal. In the institution, he was locked in a room with other kids. He was the strongest and the fastest. He’d steal food. He was aggressive, very aggressive.
“At home now, he is so calm. He has bonded with Dean. At school, our district has worked so hard in finding the right setting for him. This fall, they moved him into a program for kids who have trouble even in a special-education learning environment. They’ve bent over backward for him, and they have found the key that works for him, and so now we’re seeing huge changes.”
Audrey was adopted from Serbia in 2014.
“Audrey’s birth family couldn’t deal with Down syndrome,” Spring said. “They placed her at birth. It was just a given. Audrey was severely neglected. She was 18 pounds at 9 years old when her foster family in Serbia got her. In the year she’s been at home with us, she’s grown three clothing sizes. She’s now 45 pounds.”
‘Do you know what cancer is?’
On a recent school morning, Spring’s feet hit the floor at 5:50 a.m. The first school bus will arrive at 6:45 a.m. Ellingson handles bus duty, and Spring manages breakfast. Soon, the bowls of oatmeal are lined up and ready to go.
“It’s a well-oiled system,” Spring said. “If we’re not organized - big problems.”
Hugs are worked into the morning routine, too.
“Gentle hugs,” Spring said as Audrey grabs her. “Don’t squeeze the mom.”
Spring’s arm and chest are hurting - she had tissue expander surgery the day before related to her breast reconstruction.
As well as raising five kids with special needs, Spring has been fighting breast cancer. She is writing through this stage of life in her blog, “Garden of Eagan: Blogging about life in Minnesota, raising our five kids with Down syndrome while battling Breast Cancer.”
On March 26, 2014, Spring wrote a post called: “Telling My Child I Have Cancer.”
“Of the five kids here, Angela is really the only one who has the language to understand about cancer and what is ahead. Axel will understand that mom is ‘sick’ as will Asher and Abel. Audrey is not even close to being able to comprehend at this point. I decided Axel will do best having things explained to him as they happen. But Angela … Angela knows something is up. The hushed whispers, the tears, the anxiety hanging in the air. I don’t think it’s possible to hide cancer from my kids.
“I didn’t really know how to do this. I didn’t plan a certain script. Angela is 17 but developmentally around 7 to 8 years old. It’s hard to predict what she will understand about this, so I figured simple facts and she’ll ask questions as we go through this journey.
“Today Angela and I went for a drive. A couple minutes down the road I turned down the radio.
“ ‘Hey!’ she said, annoyed that I was messing with her tunes.
“ ‘Honey, I want to talk to you about something really important. Can you talk with me for a minute?’
“Her eyes got big and wide. She folded her hands in her lap and turned to look at me. ‘OK, lay it on me, Mom!’ she said.
“Angela, do you know what cancer is?”
“Have you heard of the word cancer before?”
“Do you know what cancer means?”
“You die,” she said, blinking big.
Then, counting on her fingers, “Grandma Spring having cancer and she died. Rubee having cancer and she died. Shep having cancer and he died.”
“I took a deep breath, swallowing hard to control the tears that were already threatening,” Spring said. “You’re right. Sometimes people and animals who have cancer die. There are lots of different kinds of cancer. Inside our bodies are tiny little pieces called cells. They’re like puzzle pieces.”
“I have Down syndrome. I have an extra puzzle piece.”
“Yes, that’s right. Cancer is a different kind of puzzle piece. Inside of us are our organs, like our heart and lungs. … All those parts are made of cells. But sometimes those cells don’t grow right. They get all confused, and they start to grow wrong. Cancer means having mixed up cells in your body. We found out that Mommy has cancer.”
The cancer was caught early. Spring chose to fight it aggressively, with a double mastectomy as well as chemotherapy. She recently started a five-year medicine regimen to help reduce the risk of reoccurrence and is scheduled to have her last surgery - related to breast reconstruction - in the fall.
Her prognosis is good.
In a way, her children have given her the energy to fight this fight.
“I am more active now than I have ever been,” Spring said. “We’re go-go-going all the time. I feel energized by motherhood and by seeing the changes in the kids.”
It was cancer that helped her son Tyler Harazin, now 26, see his mother’s growing family in a new light.
“At first, I wasn’t for it,” Harazin said of the multiple adoptions. “But after the cancer scare, even though I have issues with letting things go, I had to step outside of myself, pull my bootstraps up and do what I needed to do to make sure my family was OK. That meant making sure my mom was OK, helping out more with the kids, accepting all the kids. A year or so later now, things are a bit more relaxed.”
He’s also realized something.
“Is it really up to me to say, ‘Hey, I don’t like this situation. You should have just stayed tied to your crib your entire life and suffered.’ No, it can’t be like that. We all have opportunities to help out in certain situations, and this is my mom’s opportunity. If she is here to do that, who am I to stop her? I’m going to support her.”
Support also comes from a family friend, Kathie Brinkman of West St. Paul. Brinkman and Spring met at a community-education workshop a decade ago.
“Her daughter, Angela, and my daughter, Katie, who both have Down syndrome, became friends,” Brinkman said. “When Leah first started talking about foreign adoptions, it just made sense. She’s always been an advocate, a mentor. She’s always shared her experiences with other people, whether online or in person. She’s a walking encyclopedia of really everything to do with Down syndrome. And both she and Dean are absolutely committed parents. They don’t take themselves seriously, but they take parenting very seriously. They are the type of people who should adopt.”
Brinkman has watched each child start to blossom in the yellow house on the top of a hill in Eagan.
“This is Leah’s gift,” Brinkman said. “She’s been called to motherhood.”