Victoria is a wife and mother of two beautiful children. Her first child was born with Down Syndrome almost a decade ago, and although she was initially distraught especially as he grew, and she observed that he was excluded from certain activities, Victoria did not remain distraught. She reached past her pain and helped others. She set up a non-profit organisation, Lovely Heritage Down Syndrome Charity, which promotes inclusion not only for children with Down Syndrome but all children. She is an amazing young woman. She has been able to find purpose in the midst of her pain. She now understands that having a child with Down Syndrome was not a punishment from God for something she had done wrong, rather it was a journey that was necessary to shape her into the woman God wanted her to be and to help her empathise with others and become an advocate for children with Down Syndrome and special needs. Many times, the challenges that come our way are not because of something we have done wrong but something God would have us do right. As you read Victoria’s inspiring story, I hope that you will take another look at the current challenges in your life and see the blessings and opportunities that they carry. What will you do right, what will you do differently because of that situation?
Victoria, will you please tell us a little about yourself?
Okay. My name is Victoria Ibe. I am a mother. I have got two boys. Also, I am the founder of Lovely Heritage Down Syndrome Charity.
Victoria, your first child, was born with Down Syndrome. At what point did you discover this?
I discovered this challenge after I had my son. Immediately the doctor discovered that something was wrong with him and took him to the intensive care unit and from there they ran some tests on him and came back with results that he had been diagnosed to have Down Syndrome.
Wow. And this was your first child. So how did this information impact your life? You had carried the baby for nine months; there were no issues or concerns you didn’t have any warning that this was going to happen and then you had the baby and got this report. For a first-time mum, how did it impact your life?
It was a shock for me, a very big shock because first and foremost, I did not know what Down Syndrome was all about then. I knew there was something called special needs, but I didn’t know much about Down Syndrome, Autism and the rest of them. And again, it was a shock because all through my pregnancy I was fine I was healthy I went to the doctors for scans and everything was good, the scan, the blood tests, so it was a huge shock to me. But I later accepted my fate because I believed that things do not just happen like that, before they happen God knows why, so I accepted it.
But at the point where you were still trying to comprehend or accept what the doctors had told you, did you feel guilty, that this might be my fault maybe I didn’t do something that I should have done, did you go through that phase?
Yes, I went through that phase but not for too long because I did not believe it was my fault because I have seen other mums that smoke and drink and yet they’ve got healthy children. I am not saying it is good to smoke or to drink. I wasn’t really blaming myself at the initial stage, but I was asking God questions like why me, why should this happen to me what went wrong what did I do wrong that this should come to me? I don’t drink, and I don’t smoke. I ate what they said I should eat while I was pregnant, balanced diet, fruit, veg, so I was thinking, what have I really done wrong that will make me have a child, with Down Syndrome?
So, how did your family, those in your close circle, your family and friends how did they react to the news that your child was born with Down Syndrome?
Well, they also reacted the same way that I did, and they were a little confused. But my mum wasn’t confused because she was a nurse and she had knowledge of what Down Syndrome was all about. But she said I was just thirty; it wasn’t like I was forty or forty-five. Because they believe that most times people that have children with Down Syndrome are people that are older. But later we found out that it is not by age because there was a twenty-five-year-old girl that I met there in the hospital who had her son and he was diagnosed with Down Syndrome, so it has nothing to do with age. My close family and friends were really surprised about the birth of my son and the diagnosis. Everyone was in shock because it was my first child, and everyone was expecting a big party. And it wasn’t just that my son was born with Down Syndrome, he was born with various other complications which I thank God that today my God has healed him from all those. He had two holes in the heart, he had a respiratory problem but today to God be the glory he is fine, he is nine years old, and he is in school and doing well.
Wow. That is awesome. But what support was available to you? You were a first-time mother, which is cumbersome on its own and then with a child who had Down Syndrome. What support was available to you?
My mum was a very big support for me. And because I was still in the hospital because my son was still in intensive care the nurses in charge, and the consultants, they referred me to family support and other people. They were really involved in my case because they knew I was a first-time mum with such an issue and they understood very well that I didn’t know what Down Syndrome was all about. So, they did their best in supporting me in every way they could, and my mum was always there with me then, two-four-seven. Like I said earlier she was a nurse and apart from being a nurse, she was a nurse to me and also a mother. And sometimes when I am really down, whatever the doctors are saying if I am not really listening she would tell them to please let me go that she can listen on my behalf. Then later when she sees that I am fine, she comes back to explain to me what the doctor had said for me to understand what’s really going on. So, NHS, I would say, all round, NHS and the pediatric team and family support and social workers and all that deal with a disability, they were really involved. So I had support, I was not neglected at all. I had support.
Looking back, what have some of the biggest challenges been with regards to raising your child?
The truth is that it’s tough raising a child with special needs and it’s a twenty-four-seven job. And I have to suffer the prejudice of others on top of that, and that is just too much for me. But as the years roll by I have been able to get bolder and stronger with every challenge that comes my way with regards to my son. Because let me say the truth, no matter how you raise awareness about children living with special needs, it’s just very few people that understand what it is and what you’re going through. The majority just listen, and it goes out of their ears, and most times they react to you in the public places, like churches. They look at you when your child is acting up, or his challenges come up or something, and they know this child has special needs but the way they look at you as if it is a new thing. You already know him and what he does so why do you look at him that way why don’t you just walk past? But as the years run by I have been growing out of it, I don’t allow such things to disturb me rather when you look at me I will give you a very nice smile that will make you embarrassed. So it’s been tough, really tough but I will say I am thankful to God for giving me the grace to be bold taking a lot of things in. You know they make assumptions about you, they find you wanting, they treat your child as though he or she is dangerous or badly behaved. It is so hard to deal with that. I have friends with special needs kids who don’t even take their children out anymore or even go to the supermarket to get some groceries for an hour or two, so it is really challenging.
I can imagine, but how has God been faithful through it all because no doubt the challenges have been there but when you look back how has God been faithful?
Oh, God has been so faithful, by His grace, I have found strength, as the Bible says that we can do all things through Christ that strengthens us. That word is powerful, and it is true, I am a testimony of that word of God. God has given me strength, I know myself, I know where I am coming from before I had my son I can’t even explain how the strength comes but I know this is not me this is God holding my hand at every stage, every moment, He is there. So, I say that God is incredible and faithful, He is so awesome I don’t know how to say it, but I am very grateful that He’s been so faithful and so good to me and He’s given me that courage and wisdom to be able to look after my son.
Oh, that’s great. So, He’s used this to develop you, to make you a better person?
Yes, I would say that. Yes, that’s true. He’s used this to make me a better person; I would say that, that’s very true. I am more mature, wiser and the way I take things before, little things get to me, but now I have really learnt a lot, and I will say that what I learnt more is patience. My son’s disability and challenges have made me very patient in everything I have been through in life. I have learnt the meaning of the word called patience and I am very glad about that.
That’s great Victoria. Now, let’s talk about Lovely Heritage Down Syndrome. Could you please tell us about this organisation, this non-profit that you started and how it came about? When exactly did you start?
It started on the 3rd of September 2014, but before then I didn’t have Lovely Heritage as the name for this charity, I didn’t have any name at all, it was just one fateful day, I walked into the salon with my son when he was like two. It’s a salon where I make my hair very close to my local area where I live, and there’s a Nigerian woman that was making my hair for me, each time she sees my son she embraces him as her own, and she tells me, do you know this boy is a wonderful child? You have this son because God wants to use you to touch other people with the same situation as yourself and do you know what? I laughed about it because I wasn’t ready for that, but when I went back home and told my mum, my mum said yes, the same thing had been on her mind, and that woman must be from God and that I should think about it and pray about it, which I did. And I was really struggling with it and running away from it, but when I started, I knew that yes, indeed God was in this and I thank God for that woman that encouraged me. So Lovely Heritage Down Syndrome is established to meet the needs of children and young people with Down Syndrome or other learning disabilities by the provision of recreational activities and support for parents and carers and also raising awareness of the issues faced by children and young people with Down Syndrome or learning disabilities. So that’s what Lovely Heritage Down Syndrome Charity is all about.
That’s great. This you started in September 2014, what impact has it had so far?
Yes, for those who have been involved, even my team, who do not have children with special needs, they are so involved in this charity, and it has had a great impact on them. It has changed their orientation and the way they think, they’ve really come to know that these children are really special, and they need our love and care around them. And the parents who have been consistent in coming for the various activities we’ve been doing, they’re really happy for such a thing going on that there is someone out there who could start a thing like this for our children. Because some parents don’t find it easy to go out with their child or children with special needs for birthday parties or activities because it’s really tough for them and they cannot cope in public. But mine is different because right from time I have always told myself I wouldn’t allow my boy’s challenges to stop him from going to where they have invited him to. I take him anywhere he goes to, and people are proud of that. So that is what I am trying to do with this charity, So this charity is not just for the children with special needs because our vision is for children to be accepted in the society, social inclusion, that is the message we’re trying to pass out, and we’ve been to school for awareness, we’ve raised awareness in schools for other children to know what these children are going through with their parents and also accept them for who they are.
That is some great work you are doing Victoria, well done. We’ve talked about the impact that the charity has had on parents who have children with Down Syndrome and even other parents but what impact has the charity had on your life, how has it transformed your life?
I will say, first and foremost, that the charity has transformed my life in a way that I am able to talk in public, which normally I don’t know how to do before. I talk with friends and family members but coming out to talk to people in a crowd; it has given me that courage, to be able to stand like I am an advocate not just to my child but all other children with special needs
So, this has made you bolder with regards to speaking publicly?
Yes.
What is the greatest lesson that you have learnt from your trial?
The greatest lesson I have learnt from my trial is patience and accepting people with special needs for who they are.
But has it also taught you to be accepting of people in general, no matter the situation or the challenge they may be going through?
Of course, yes, that’s included too, people in general apart from individuals with special needs, people in general.
What plans do you have for the charity what are the plans for the future?
We’ve just started a monthly activity, every last Saturday of the month. We started in February, and the plan is for it to be a continuous one because so far so good, people who have attended have been saying that they would want it to continue and we shouldn’t stop, so that’s one of it. Now, we have that monthly activity to bring social inclusion for children with special needs and other children without additional needs.
Okay, so you’re looking to have that properly established, and you’re looking at continuing that as you go along?
Yes, please. Yes.
How can people contact you if they want to know more about you and this charity?
They can get in touch through my website, it’s www.lovelyheritage.org.uk, and the email address is info@lovelyheritage.co.uk
So, do you have any final words, words of wisdom for the mothers out there who have children with Down Syndrome or perhaps their children have friends or schoolmates with Down Syndrome?
I would say to such mothers, that you make time to enjoy your children engage them with what is important in their world, make memories, play. Play is a therapy, have fun and get stronger.
