A Single Mom Explains Why She Chose To Adopt Babies With Down Syndrome

January 31, 2015

Jilly Smithson had always dreamed of having a family just like the one she grew up in - a mother, father, and two children. But in her late 30s, she realized it might never happen, so she made a decision.

single mom adopts special needs kids
Jilly Smithson / The Guardian

When I was about seven, my class at school was asked to imagine the future. I wrote an essay saying that I would be a mommy, married to a daddy, and that we would have two children, a little boy and a little girl. That's what the home I grew up in looked like - and that's what the word family meant to me.

But things turned out to be a bit more complicated than that. Today I'm 41 and have a daughter, Emily, five, and a son, Tom, two. I've adopted them as a single parent and both have Down's syndrome.

I was 35 when my last relationship ended and knew that time was running out for that dream of a family I'd had as a little girl. I didn't want to waste my life waiting for another man to come along when he might never turn up and even if he did, he might be too late. I'd been fostering for a couple of years and had thought about adopting but always imagined doing it with a partner. Now I would have to let go of part of that dream. If I was going to have the family I'd always wanted, I would have to do it on my own.

As a teacher of children with disabilities, I'm fascinated by the ways in which people are different from one another. Once you take judgment out of the equation, difference becomes something beautiful. I had a strong instinct that I would be a better mother to children with special needs and felt confident I could offer a loving, safe home, where they would feel understood and cared for. So I approached a voluntary adoption agency which I knew had experience in placing children with additional needs. Coram, the agency, also offers support for families after adoption, so I knew I wouldn't be left alone.

After interviews, training, and all my police and medical checks, I was finally approved to adopt in July 2009. It was just a question of waiting for a child to come along.

I had one last grown-up holiday, backpacking around Europe, staying in a monastery and in people's homes. I knew that once I was a mother, trips like this would be impossible. It wasn't just about holidays - my whole life would revolve around the child and I would be on my own. All the big decisions - the hospital appointments, school runs - everything would be down to me. My parents were very worried and my dad, in particular, who had never met any people with disabilities, was apprehensive about the huge responsibility I was taking on. Although he promised to support me, whatever decision I made, he was concerned that I would struggle with the late nights and emotional lows, with no one to help me. But while I was away trekking and sightseeing, as I questioned myself and triple-checked, I always came back to the same answer: yes, I was doing the right thing.

Not long after I got home, the agency rang. I remember standing by the window and hearing the words that would change everything. There was a baby girl, five weeks old, who had Down's syndrome and desperately needed a family. I was asked if I would be interested in adopting such a young baby - much younger than I had thought possible. I was so stunned that I could barely reply, but managed a breathless yes.

single mom adopts special needs kids
Jilly Smithson / The Guardian

As soon as I put the phone down, I began to imagine what it would be like to be a mother. But all I really knew about the baby was that she was very ill in hospital with a complex heart defect - the most common heart defect in children with Down's syndrome - and awaiting surgery. I forced myself not to feel so excited and kept the news to myself because for the next few weeks, all I could do was hope she would be all right.

The first time I met Emily, she was attached to oxygen and had a feeding tube, but I didn't even notice those. I just saw the child and big blue eyes that never stopped watching me. I took her in my arms, held her and just looked at her for a while. The photographs I'd been shown hadn't prepared me for the reality of holding this bundle of warmth and I loved her from the moment I held her. It was immediate. She had no one. She needed me and I was going to be her mother.

Next day, I went on adoption leave from work and for a month I visited her every day, until I brought her home in October. As well as setting up a nursery and buying a cot and pajamas, as all parents do, I had to learn how to set up home oxygen and use a feeding tube, which was pretty scary.

So far, Emily has endured three lots of open heart surgery and when she was recovering in intensive care, she endured terrible fear and trauma from the emergencies taking place around her. It meant that she couldn't sleep properly and she went through a phase of being very afraid of everybody and everything. The way she has coped with all of that has taught me everything about courage and bravery.

I'd always wanted my child to have a sibling and four years later I felt ready to adopt again. Because of what Emily had been through, I specified that I couldn't take another child who would need heart surgery. It was only after Tom joined our family in September 2013 that I discovered he had been misdiagnosed - the consultant told me that he also had a heart condition, although not as complex as Emily's, and he, too, would need an operation.

It was a huge shock and very upsetting to realize that we were going to have to go through it all again. But you can't plan for these things if you give birth, so why should it be any different if you adopt? Life isn't predictable and you just have to deal with it.

That's what I've learned from Emily. Now when she and Tom sit next to each other and sing Row Row Row Your Boat, I know in my bones that this was the right decision for all of us.

There are still many hospital appointments to juggle and other things that are more complicated for us than they are for typical children - childminders and inclusive activity groups are like gold dust, and I have to pay up to three times the usual fees. I would struggle financially, raising two children with disabilities on one part-time teacher's salary if I didn't have the benefits to which we are entitled.

single mom adopts special needs kids
Jilly Smithson / The Guardian

Emily goes to mainstream school two days a week, while I look after Tom, and three days a week she goes to a special school while I work as a teacher and Tom stays with the child minder. At weekends we play in the park or go to the library, where everybody knows us and likes to say hello to Tom and Emily. My favorite part of each day is our bedtime routine. The three of us sit together reading stories and then Emily helps me put Tom to bed. While I sit rocking him and singing him a lullaby, she cuddles his toy and sings along. When I put him to bed, she puts the toy in beside him and together we tuck them in.

No one else has come along to share our lives, but I would be open to it. Making the time to meet somebody is difficult, though, and it will be tough to find someone understanding enough to become a part of our family life. Instead, I lean on my hugely supportive network of family and friends, including my parents. Now that my Dad has got to know Emily and Tom, he idolizes them - he's so proud of his grandchildren.

I know society has a negative view of disability, but I think it stems from ignorance because most people have never met a disabled person or else make assumptions based on out-of-date information. Only 25 years ago, my children would have been poorly and had a low life expectancy, but now the majority of children with Down's syndrome go to mainstream school, manage independent or semi-independent adult lives, and many can expect to live into their 60s.

Sometimes people come up to me in the street and ask what's wrong with my children. Then they say, "Didn't you know?"

I don't answer rude and intrusive questions like that. But the truth is, yes, I did know. My children weren't a second choice for me. This is the best thing I've ever done and I'm not alone any more. My family photographs may look different from the ones I imagined when I was seven, but now I understand that family means something different to everyone. My life is everything I have ever wanted. I'm not on my own - I have a family.

This article was written by Jilly Smithson for TheGuardian.com.

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