“I Choose To See My Glass As Half Full”
Posted in True stories | By editor | On 03-12-2008
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I was over the moon the moment Damola was born. There I was, a young woman, newly married, with a first-born child – and a boy for that matter in a Nigerian society. I was completely ecstatic! And bearing in mind that my husband had earlier been married without a child, it was a great joy for his parents; their first-born son was finally having a child, and a boy at that. However, my husband and I noticed on the second day that things were not all they were expected to be, but I put it all down to the fact that I was a new mother. I noticed, for instance, that he didn’t suckle; he didn’t take the breast milk the way other babies did. He was sleepier. He was an extremely good baby, slept through the night and except you woke him up to eat, he wouldn’t actually wake up to cry like other babies do. But being a new mother, tired and all that, I was a bit grateful that my baby slept and allowed me to sleep.
At home, we noticed he wouldn’t breath very well. And then he wasn’t thriving; he wasn’t gaining weight as he ought to. Although he didn’t look like a typical child with Down’s syndrome, he had all the other features. He was extremely floppy, very soft, very cuddly, and therefore everybody wanted to pick him up and cuddle. But we – me and his father who is also a medical doctor and a neurologist at that – knew it was floppiness as opposed to the normal cuddliness in babies.
Within two weeks of his birth, Damola developed an ear infection that necessitated our being admitted into the University of Lagos Teaching Hospital. All the investigations were done, but at that time, 18 years ago, we couldn’t do chromosome studies in the teaching hospital because it was new worldwide and expensive. But my husband and I resolved that whatever the case, this baby was ours and we loved him. Later we took him off to England where a diagnosis was made within 48 hours. He had Down’s syndrome. By that time, of course, he was about five months old and his position in the family was established.
Even as a doctor, I had no inclination whatsoever during pregnancy that anything would go wrong. In fact, I am very untypical of women who have children with Down’s syndrome. Usually it’s a condition that occurs to children of older mothers of about 40 and above. I was 25. Such children are usually last-born children, sometimes after a longish gap. Damola was my first-born.
After Damola, I was apprehensive of what would happen to my other children. A group of medical professionals was like, “Oh, you have a child with Down’s syndrome. You better delay the rest of your family so that you can have time to look after this child.” Another group offered a completely divergent opinion: “Oh, you have a child with Down’s syndrome. You better hurry up and have more children because children are the best teachers of children.” We bought into the last advice and had two more children in quick succession, and then a fourth after a bit of a delay. It proved a bit beneficial to Damola and our family as a unit. And I must say that 70% of what Damola can do today is attributable to the siblings pushing him along, encouraging him, accepting him and being there for him…
Of all disabilities, intellectual disability is the most difficult, the most challenging. You know there is a limit to what they are ever going to learn and how much you can communicate to them. And any child born to you that is not up to your expectation, and I take that in the broad sense of it, leaves you with a sense of bereavement; and with that you are bound to grieve. But the most difficult challenge is that you are grieving for a child who is not dead. You discover that you are grieving for lost expectations, lost aspirations, lost dreams. And at the same time, you are not allowed to grieve openly because the child is there and well. And that is part of the challenges.
We got through the grieving process mercifully quickly because of a great deal of family support, a great deal of knowledge on our part and the acceptance that a problem is a problem as long as there is no solution. But there are times in Damola’s life and in our life as a family when the whole grieving process starts all over again.
I remember one very poignant Saturday when Damola was about 10. Suddenly the whole neighbourhood was quiet and, for a minute, I didn’t understand what was going on until it dawned on me. All his age-mates and friends were off to do common entrance exams! My son wasn’t going to do common entrance exams. My son would probably never do common entrance exams… That started another flood of emotions. It gets better as time goes on, but there are going to be times when all his age-mates are going to the university; my son won’t go to the university. When his mates are going to get married, at a time that you expect young men and women to be getting married, the chances of it happening to my son are still rather remote. It will not happen the way it happens to other people’s children. And those are times when I do feel it and I will feel it. And then as we have begun to see services being put in place, as we have begun to explore the endless opportunities that I now see available to them, I don’t feel so desperate or despondent anymore.
To jump into the immediate past, none of my other children, and a lot of women out there can boast of having an Olympic gold medallist as their child. So, in many ways I have come a long way and I have come right round to a point where I can actually celebrate plenty of things in my son that a lot of parents may never celebrate via their sons. You wouldn’t be here talking to me and I wouldn’t be appearing in Genevieve, the best all colour, all glossy magazines in Nigeria today, if not for Damola. Whichever way, Damola has allowed me to warrant an entire focus. So these are things I’m going to be celebrating, and when I begin to celebrate these things, it in many ways overtakes the perceived pains. As the philosophers say, “You can either see a glass as half empty or half full”. I just choose to see it as half full. It’s very easy to fall into that grieving process but it’s more rewarding to celebrate him. It didn’t even occur to me (at any point) to hide him because he was my first child, although I do appreciate now why some mothers who have them much later do that.
How would I describe Damola’s growth educationally? Again if not for him, we would not have known the capacity our educational system has for accepting different children and I must celebrate that. As a people, we are remarkably tolerant. And we are more accepting of the differences in people than lots of cultures in the world. And I celebrate this too. I remember in August 1997 when my second son, Demilade, was about four months, I’d started work again and everybody’s two-year old that I knew was getting ready to go to nursery school; so I too was looking for a nursery school for my son. And I went to Little Angels in Apapa, near my office and met this proprietor, Miss Mbadiwe at the time. And I said to her, “Listen, my son is two years old, he was born with Down’s syndrome, and I’d like him to start school.” Because I’m a doctor, I was not expectant of any massive academic performance and I told her that. However, I told her that every child benefits from social interaction and what I want Damola to benefit from school is interacting with other children. I said, “Don’t worry if he doesn’t learn his ABC or his 123. Trust me, I’m not worried at all. He would learn what he’s going to learn, but more importantly, he must learn social graces and social skills.”
And she promised to give it a try if I could tell her what to do; she’d had no prior experience with children with Down’s syndrome or any other intellectual disabilities. I would always remember her and thank God for her life because, it’s amazing, the first person I met was willing to help. I’ve heard some really horrible stories of some other women’s experiences. And it was about three months after she’d taken Damola in that I realised what a great thing she was doing for me. All the other parents started giving her trouble that if she did not remove that child from the midst of their children, they would withdraw their children…! She never told me. She fought the battle herself on behalf of my son. One or two parents did withdraw their children, but the majority she managed to speak to and win over. And they began to see Damola as a person. I will forever be grateful to her for that.
As time went by Damola grew up with his mates. But needless to say that when they went into primary one, he couldn’t go on with them. Fortunately by that time, his younger brother had started school, and in fact the younger sister was now on ground and getting ready to start school. When Demilade was ready to start primary one, I took the two of them to Corona School, Victoria Island. I’d spoken to a seasoned educator and educationist who immediately referred me to Mrs. Sashegbon of Corona School. She felt if anybody could do anything with Damola, it had to be Mrs. Sashegbon. And I tell you, that woman was wonderful. She’s become a friend, mother and a grandmother to these children. She took them on with no qualms whatsoever, and made the school fit Damola and Damola fit the school.
He has friends from Corona School, Victoria Island, to this day. They worked with him up to primary four when he could no longer keep up with the pace of his mates who had to be prepared for the common entrance examination, and we were ready for this. But he acquired basic skills. He’s got alphabetic skills, he’s got numeric skills; he can do simple addition and subtraction, he can read simple three-letter words, he’s got all the social skills and graces of his age, which is very important. He knows what is appropriate behaviour in public, touching, he knows when it’s appropriate, to whom, where. He acquired all that in primary school.
By the time he’d exhausted the capability of Corona coincidentally, the Children’s Developmental Centre, also in Lagos, was developing. The proprietress, Dr. Yinka Akindayomi who’s been a friend since College of Medicine met me one day in January 2000 and told me she was starting an adolescent unit. Damola by this time was 14 going on 15. He was beginning to hit puberty and was looking somewhat odd in the midst of the other children in the other nursery school I’d put him in the neighbourhood. So Dr. Akindayomi who also has one of such children said to me, “Are you willing?” Of course I was willing. And since then, Damola has taken off. He’s doing things that even I am amazed. He cooks; he’s very good at that. He knows how to play on computers and can sign his name and relay messages. His speech? That’s not very clear and we are still working on it. You must remember that one feature of children with Down’s syndrome is that their larynx are very soft, and so talking is for them a painful process. But he has an extensive vocabulary. I can tell you that.
Oh yes, many times I’ve wondered and lamented, “Why me? Oh God, why me?” I’m a human being you know and the devil will attack you at your moment of weakness. Most recently, I had to sit for an examination. I couldn’t practice for 14 years because of Damola’s circumstances, the fact that I had my three other children in quick succession, and my desire to give them all every opportunity. So my mates at school have now advanced their careers to the point where they’ve become consultants and what nots. And I came back and picked up my stethoscope in the year 2000 and said to myself, “Well, my children are well on their way. I can now go back to my profession.”
But I had to sit for an examination to be taken into the Master’s in Public Health course. And then the pressure to pass was there and the children were, of course, all over me and everything seemed to be going wrong. And then somebody passed a very disparaging comment about adult education. And it all came over me, and I said to myself, ‘Why won’t they say it to me? After all, I should have been doing this exam 12, 13 years earlier. If I’d done it at that time, if not for Damola, I wouldn’t be here going through this insult in my old age. And I was like, ‘Oh God, why me? And I would wallow in self-pity, big time. But then somebody said to me, “Shut up,” and reminded me that some of my classmates may be consultants, but they may not be married, and some married, may not have children. The devil can make you lament and bemoan what you are not and will never be; a thing I’ve chosen not to fall for.
Damola is today in the adolescent unit of the Children Development Centre. A Lagos Living and Learning Centre, which will be residential, is being built – and he’s moving in for vocational and job training to be able to hold down a job. There are lots of job opportunities that will be made available to them because a lot of corporate bodies are very interested in the work the CDC is doing in making these children part of the society, so they could have the same sense of self worth you have and a fulfilment in holding down a job and being financially independent.
Regarding his development so far, he is slower in certain areas than others. His reading skills are still very poor, his communication skills are developed but he doesn’t like using them because he doesn’t like talking. He can cook, he can clean. Oh God, he can clean a kitchen. He is the most skilled person in my house in cleaning a kitchen. You can see, his motor reflexes, his gamesmanship; as you can see, he loves games. All right, he’ll never be a Ben Johnson, a Michael Jordan… but he is definitely going to be first among his equals. He is very sporty. His training for the Special Olympics where he won a gold medal in 100 metres showed us that he is capable of great skills in athletics.
And so I can tell you there’s great prospect for him, Damola Roberts. He’s got a girlfriend! He’ll kill me for telling you, but he’s got a girlfriend. And I am praying that society will become tolerant enough to allow them to get married. He will hold down a job because I am going to fight for his right to do so. A lot of the things we are going to fight will be society’s attitude, not Damola’s inabilities. Already I can see him doing very well in the food and beverages sector and in the hotel sector, because he’s exceedingly competent at cleaning and managing kitchens and stuffs like that. And he’s already independent here within the estate; he can get around. He’s got his clippers, he knows the barbers, he knows how much, he can take himself off to places and sort himself out, he knows where to get his sharwama, his suya… And that needs to broaden for him if I, as a mother, am not so worried about ritual killers. He could probably actually take himself off to the centre on his own.
And honey, can I describe my feelings when he won the Special Olympics gold medal in words? How would you feel if your son wins a gold medal, 100 metres, at an international meet no less than the Special Olympics? Over the moon doesn’t begin to say it. Nigeria is an emerging program in the Special Olympics meet. We sent a team of four; we came back with four medals. Has our national team gone to the Olympics and come back with anything more than one or two? I was extremely proud of all them.
There is an association of families of children with Down’s syndrome, but I confess I’ve not really been a part of it. The families come together and share experiences. Parents of children with intellectual capabilities can get a lot of help and counselling at the Children Developmental Centre. Family doctors can also give you very valuable advice.
The important thing is to have hope. It is not as great a disaster as it was in the days when there were no services. Now we can do a lot more with these children, now we are capable of making them learn more, do more. In developed countries like the UK, the Down’s syndrome is no more a big deal. People are beginning to see that there’s hope, and the more the society becomes aware of their capabilities and strength, the less they’ll dwell on their weaknesses.
Rather than go through unnecessary bits of wrong advice, and trips to native doctors, prayer houses, churches, and the mosques – I’m a committed Christian by the way – where they are told to do seven days fasting and ten days blue fasting; mothers should basically come to an acceptance of the reality of what is and work with it.
Its wonderful to be reading this……..truly i was touched for this is a real example of a mother’s sacrifice….the ability to see gold in the dust …to hope in the face of great despair and i salute your courage.
I am a young mother of two children and its tough as it is..with them, I pray the Lord will bless your sacrifice and i will always remember Damola every day in my prayers
”its the hearts we touch , the friend who care , our companions along the way…
the dreams we cherish, the hope we share as we go from day to day …..
that weave into life all that’s bright and fair…the richness that will stay..” [an old poem i learnt in primary school]
lots of love …….
I couldnt stop crying as i read this piece, i really appreciate all you’ ve had to go through, not because have been through them, but because i ‘ve seen a lot of people with down syndrome in our society, and i know they dont get the kind of care you gave your son.
I just hope other mothers, relatives, government and the larger society will learn from your story and treat people with down syndrome with care, so as to have opportunity to develop like in the western society.
May God continue to be your strength.
I really feel your pain,& I know it has not ben easy for U.I appreciate the fact that U see the cup haff full,your optimisim,love & acceptance of your son has gone & will still go a long way in making Him a better person,I hope all others affected draw strenght from your story .God’s mercies * grace are ever with you.
U av a wonderful and a good heart.im very sure ur labour of love is nt in vain.God bless u.
U av a wonderful and a good heart.im very sure ur labour of love is nt in vain.God bless u.
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