“‘Your son is totally fine, nothing to worry about,’ the doctor said as she checked him over. I took that statement and I clung to it. It was exactly what I wanted to hear, even though I knew it wasn’t true. I was his mother and I knew my 2-week old son had Down syndrome.
River had been born a few weeks earlier at home. It was a planned home birth and although it was extremely fast, there were no complications. His dad never even made it in time, that’s how fast it was! But he was healthy and a few hours later, we were tucked up in bed and happy.
Except I wasn’t happy. Not really. You see, as soon as I saw my son, I suspected he had Down syndrome. I just knew. I never mentioned it to another soul, not even my husband, and nobody else suspected a thing. I remember flicking through photos and studying them, looking for clues. I remember deleting the ones where I thought it really stood out because at the time, I just really didn’t want it to be true. I remember Google listing all the signs and I was so confused because while he had some, there were many that he didn’t have. That gave me hope I was wrong. He wasn’t floppy like many babies with Down syndrome are due to hypotonia. He didn’t have a sandal gap between his toes and although he did have beautiful almond-shaped eyes, the rest of his facial features weren’t obvious. However, he did have a herniated belly button and a palmer crease across his palms, which are both indicators. On top of that, I just felt River had Down syndrome. Nobody else did, though. Not the midwife, not our health visitor, not the doctors, not the GP at his checkup, not the hearing specialist when he failed his test three times, not the nurse who administered his vaccinations. Nobody.
When River was two weeks old our midwife visited for a check-up and when she was checking him over, I knew something was up. I remember thinking this was it. She was going to tell me today. She didn’t tell us her suspicions though, but she did tell us she thought he needed checking over at the hospital. We made an emergency appointment. I knew why.
The next day at the appointment, I was so ready to be told my baby had Down syndrome. I just wanted to know at this point, so we could process it and move on. I genuinely expected to hear those words, but they never came. The doctor gave us a physical check and told us River was healthy and completely fine. ‘Nothing to worry about at all,’ she said, so I didn’t. I took that ‘he’s fine’ and ran with it as fast as I could. I was completely uneducated about Down syndrome at the time and imagined it to be a terrible thing. It feels unbelievable to me now, but back then, I really didn’t want my son to have it. I was so relieved when I was told everything was ok. It still gnawed at me deep down, but I just tucked it away and got on with our lives. We were so happy with our two sons and life was perfect.
We had been living in Tanzania for 7 years and following River’s birth in the UK, we returned there. British health professionals had told us everything was perfect, so there was no reason not to move back. Our businesses were there, our oldest son was in school there, and that’s where our life was. So we returned and everything was great. River developed slowly, yet beautifully and was an absolute joy of a baby. He was perfect! He and his brother had a fantastic relationship from the very start and my husband, Reagan, and I were just so very content with our little family. River having Down syndrome still crossed my mind from time to time, yet for the most part, I didn’t really think about it. Then, one day, he was being checked over by a European doctor here who suspected straight away. She asked me if Down syndrome had ever been brought up before. At that moment, everything just fell into place. It wasn’t a shock at all. I’d been internally processing it for months.
Explaining it to my husband wasn’t easy. In Tanzania, there is a huge stigma around Down syndrome and it’s seen as such an awful thing. I was worried, as a Tanzanian man, he would find it difficult to accept. But he didn’t, not in the slightest. He found it hard to believe in the beginning, because River was just a baby and doing fantastically well. In Reagan’s mind, there was no indication at all his son had a disability. He was just his perfect son. When I showed him pictures of other babies River’s age, though, I could see in his face he saw it too. That was the moment Reagan accepted his youngest son had Down syndrome. It was okay, though. We had a moment of upset, but quickly we saw it as a challenge and just knew we had to figure it all out. That’s just who we are, positive and problem solvers. We’d faced hard times before and we could totally face this.
The very next day we had to travel 8 hours to Nairobi in Kenya, where there is a fantastic private hospital. As soon as the doctor saw him, he immediately confirmed it just by looking at him. They needed to send his blood to Europe for full testing, which would take a few weeks, but he said in his mind, there was no doubt River had Down syndrome. It was a funny feeling in that doctor’s room. Skyler was three at the time and all four of us were in the office waiting for the news. While it felt like it should have been a sad moment, it really wasn’t. There was a huge sense of relief to finally know and to just be able to get on with our lives, whatever direction that was going to take. River had a whole load of tests done and luckily he had no health concerns, so we were sent on our way to start processing things. The doctor’s parting words were, ‘Just go home and love your baby.’ I was so grateful for that. He didn’t say anything to scare us, give us any negative statistics, or make us feel like there was anything wrong with our baby. He just sent us home with a positive message. ‘Love our baby’ was exactly what we were going to do.
That weekend, we spent visiting elephant and giraffe sanctuaries, eating at good restaurants, and just having loads of fun. Our life was not over just because our son had an extra chromosome. It was just going to be different. And our family quite likes different!
So life went on. I always say I’m so grateful the health professionals missed River’s diagnosis because I feel we got a chance to get to know our son without the fear. By the time we knew for sure he had Down syndrome, we already knew everything was going to be okay. We already knew how amazing our son was. Life after diagnosis kind of returned to normal pretty fast. We had some time of adjusting to our new life, learning about Down syndrome and what we could expect, but to be honest, we just keep living as we had been.
One of the great things about living in Tanzania is life is lived at a slower pace. We are out of the rat race of 9-to-5, bustling towns, and always feeling busy. Our lives are less scheduled, full of nature, and we get to just enjoy being in the moment a whole lot more. I think this freedom has aided River’s development massively and having the space to be active and explore has been so beneficial for him. He has never had any therapy of any kind. It just isn’t available here. Our diaries are not jam-packed full of appointments, as there is nobody to have appointments with. Yet he is thriving more than I could ever have imagined and as strange as it may sound, I don’t feel sad about the lack of intervention in his life from professionals. Even at his international school, he is the only child with a learning disability and there is no professional experience in that area. Yet we work together and he is so loved and well cared for. I wouldn’t change that either, because the hardest part about inclusion is finding somewhere your child who is different is truly wanted. And he is most definitely wanted.
The hardest part about living in Tanzania is the lack of knowledge and acceptance around disability, especially Down syndrome. It is seen as a curse from God or a curse being put on your family from witchcraft, and many families are banished from their villages. As a result of this, many fathers leave their wives after they give birth and families hide their children away in the home and they never see daylight. Many babies are abandoned and the worst-case scenario is they will be killed. It’s hard living here with Down syndrome, as there are no opportunities and no professional care from anybody. While there may be legal rights, it’s very hard to find places that follow these regulations. The hard truth of it is a life with Down syndrome here in Tanzania is a very hard existence and not one of acceptance within society. It’s also incredibly hard to be a parent of a child with Down syndrome here, with families often pushing you out and zero support from any services here. The help just isn’t there to help people find their way. But this is all lack of education and knowledge and I will always believe this can and will change. It wasn’t that long ago in the Western world our children were put straight into institutions and forgotten about, and they certainly weren’t allowed to school or accepted into the community. But that has changed massively and I believe it will change here in Tanzania too.
River is so very loved and I see the shock in people when they realize he has it. He just isn’t what they expect from someone who has this disability. I know he is meant to be here, showing communities here what he is capable of and allowing them to believe the same is possible for their own children who may be born this way. I have no doubt River being raised here in Tanzania will have a huge positive impact on society and the way in which Down syndrome is viewed. People are learning from him every day. His Tanzanian teachers tell us regularly how grateful they are they have gotten to be part of River’s school life and they are learning from him constantly. That is advocating!
River is five years old now and he is quite something. He can fill the darkest of rooms with light and brighten the most miserable of days. He just has a way with people and spending only five minutes with him can transform your day. He is incredibly funny and very, very mischievous. He has a determination like nobody I’ve ever met and refuses to give up. He is a feisty, adventurous risk-taker and I just know he will move mountains. He is caring and loving, with a connection to people’s emotions that is quite breathtaking. He is incredibly smart and whatever delays he has in academics, he more than makes up for in his ability to figure things out. He is the absolute proof the world needs that nobody’s life should be judged on how well they do in school. We are all so much more than that! I’ve learned so much from River and as cliche as it sounds, he really has made us better people. We are so open to learning from other people’s experiences now and are committed to accepting all types of people. Different is what makes the world interesting after all.
I feel incredibly lucky to have such incredible sons and thankful River came along to teach us to slow down and enjoy life for what it’s truly meant to be — an adventure filled with moments of learning, love, acceptance, and belief.”
This story was submitted to Love What Matters by Hayley Balozi from Tanzania. You can follow their journey on Instagram, Facebook, and their blog. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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