So my friend Nkiru Njoku shared this note on facebook a few days ago. The first thing i said to her in a blackberry message was ‘i don’t think this is a brave thing to do but the right thing to do’ . I remember when she just had her baby and about month or so later she told me what was going on. I think she is incredibly blessed to be able to get to this place of understanding because for a lot of others, it takes a life time to get there. Nkiru is an extraordinary person and i know with a mother like her, her daughter Didi will be nothing less than extraordinary.
Didi was born with a condition called Microphthalmia – tiny eyes. Hers is of the severe kind, the kind that does not support vision. It is therefore called Severe Microhpthalmia or Anophthalmia (no eyes). Essentially, Didi was born blind.
As expected, my entire family was devastated when we realized. I had a good three weeks of almost constant crying. It was like my father had died all over again, only this time, raised to the power of a thousand. Or more.
The ‘over-sabi’ that I am, by the third day after her birth, I was already doing my research, trying to figure out what kind of life was possible for my daughter. We live in a world designed for the seeing. How would she interact with her environment? What would her limitations be? Would she be able to smile? Laugh? And what about physical activities? Would she sit in one spot forever and never do anything? Swimming? Cycling? Football? What was possible?
I have very good doctors in Nigeria. Didi’s pediatrician and my ob-gyn gave me a good talking to, reminding me that ‘eye wey dey cry dey see road’. They cautioned me to never see this as something that happened to ME. I wasn’t the one born without vision and the immediate challenge of having to interact with a sighted world. Self-pity was the first thing they kicked against. I bought into the idea because well, I might be a ranter, but I never pity myself. In life, as long as results are not based on my own personal effort, I never really have huge expectations. Nothing is therefore ever too big or too small. So, I guess I was at a good starting point.
Every day that I was pregnant, I prayed. Well, I pray everyday anyway. Not necessarily in the traditional fashion. But my head is usually never blank. If I’m not thinking about work or family, I’m talking to God. About all kinds of stuff, you know. People I meet, bad Lagos traffic, the state of the Nigerian nation, my hair, my family. But during pregnancy I added my unborn child to the list of inner-dialogue topics. I prayed about her. I actually begged God to give me a fearless child. A child who would not be like me – lily-livered. A child who would really enjoy the world – go surfing, sky-diving, skiing, etc., without analyzing the dangers involved. I wanted a child that would not be claustrophobic or have the fear of crowds, water and heights. A child who would not be afraid to be actively involved in politics. One who would not stop playing chess because she attached it to a horrible person from her past. That sort of thing. I didn’t want a chicken for a child. I wanted an Amazon. That’s all I asked for.
In return I promised God that I would not claim that child for myself. I promised to remember the words of one of my favorite sayings: “God doesn’t give us children; He gives children to the world through us”. I vowed that in the process of parenting, I would not live vicariously through her. She would make her own choices, be her own woman.
Then I brought forth a blind child. It was like a slap in the face. A blow in the belly. Until I started learning otherwise.
After Didi was born, the general consensus was that I had offended God and He was punishing me. I don’t really go to church. I’m not a traditional Christian, and I have views that disturb some of my Christian friends and family.
I however believe in miracles. I have seen many. But I was encouraged to do all kinds of things in order to get forgiveness and a miracle. And this was what disturbed me the most. The fact that humanity is so egoistic that we believe that when ‘good’ things happen to us, we are being rewarded for being good. It sincerely shocks me. Who do we think we are? And so the one time I let my sorrowful self foolishly ask “why me?”, I didn’t need any voice from heaven responding. My better sense asked me back, “why not you? What’s wrong with a child who cannot see?”
And that is how Papa-Didi and I see these things. I am extremely thankful to be paired with someone who has the same world-view as me. After reading about families to whom special-needs kids are born, it is sad to note that these things can break up families. Blame-games, superstitions, frustrations, etc., kick in and before you know it, people are going their separate ways when they should be banding together to nurture the beautiful spirit that God has allowed to grace their homes. It is sad. But we don’t have that problem. The problem we have though is that we are too happy. A lot of people find our contentment bizarre, our happiness vulgar. They cannot understand why we are not rolling in the mud and cursing God, or camped in front of a church waiting for a miracle.
We have a miracle in our home. All life is a miracle. Blind, deaf-blind, autistic, mute, brain-damaged children are as much a miracle as those born without any of these challenges. I have stopped feeling guilty and dirty about being happy. Now I simply limit time spent with those who would prefer to see me crying. I know that many of them are concerned for my well-being. But frankly, my friends… I am well. I am very happy. My life has not changed. I have not changed. I can still have a laugh. I am still very annoying and silly. Please don’t worry about me. And don’t even worry about Didi because she is fine. She is hitting her milestones and surpassing them. And even if she weren’t, she would still be perfect in our eyes because that’s what she simply is; perfect. And fearless too, just like I hoped she would be.
There are some children who you should worry about though. Children who you should be concerned about such that if you can get out of your judgment-box enough for you to even fathom helping them, then you must help them. It is your duty, my duty. I speak of children whose parents believe that their children are not good enough, because this is how society makes them feel, and so they hide them away.
I’m sure if you give it some thought you might realize that you know some people who have been hidden away by their families ‘because of what people will say’. I know a few. I know someone who denied her brother because he has cerebral palsy. I know a family that hid their brain-damaged son away in their kitchen for years, calling him a demon. They didn’t groom him. Instead he was left to grow long nails and his pastime became scratching his face. He would howl all night and roll on the floor, “like an animal”, as they used to say. He was basically treated like the family dog-gone-wild. He died before he was six. Filthy, uncared for, secluded.
Many years ago, I met the mother of a friend who was suffering from some mental health disorder. She too was hidden away but that day she had somehow found her way out. She accosted me and started singing some off-tune song she was making up on the spot. She wanted me to sing along. I instantaneously chose not to be afraid of her. She wasn’t a dangerous person, her illness was not the kind that made her violent. So I sang along, not missing a beat. In her children’s eyes I saw silent gratitude. You could tell that they had been embarrassed by this type of situation in the past. After she was done teaching me this song, my friends’ mother went on her merry way and again without missing a beat, I carried on my conversation with her children, as though nothing had interrupted us. This was about sixteen years ago. Till today I have never asked them about their mother’s condition. I kind of know what it is but if talking to them about it will embarrass them, then we’ll just talk about other things.
I have very well-meaning friends, many of whom I consider family. I have been advised by some of them that Didi would be best kept away from the eyes of the public ‘until she receives a miracle’. I sincerely thank these friends for their concern. But you see, that is not my view. It is not her father’s view either.
Didi screams like a banshee. She flips around on her back and her tummy. She prefers standing to sitting. She’s always flinging her legs about. She is curious about the sounds of the taps, the dishwasher and the washing machine. She eats well. With our help she is learning about her environment. She holds ‘conversations’ with us. Through her I have learned that smiling and laughing are not learned behavior; they are instinctive. She smiles when she hears my or her father’s voice. She laughs all by herself at heaven knows what. She laughs when I tickle her lips with her bottle-teat. She really laughs. Like a drunk adult. She also has a frown that makes her look just like my sister, Ngozi. She is happy. And you want us to hide her away? What then would you say to parents who have been blessed with blind-deaf-mute kids? Or brain-damaged ones? What would you say to the mother of Siamese twins? Or children with hydrocephalous? Cleft-palate nko? And Down’s Syndrome? Should we hide them all away as well?
While we have not ruled out the possibility of a miracle for our daughter (some Microphthalmic kids have been known to develop useful sight along the line and I still have faith for ‘the best outcome’), we believe it would ultimately be irresponsible of us were we to sit and wait for a miracle that may never come while our child grows up not learning about the world around her. Therefore while it makes some people uncomfortable to witness, we are teaching Didi to see with her hands, her ears, and even her feet. We get her to touch everything. We are constantly talking to her. She enjoys her music too. Because of her, I now listen to some classical music (*groan*). Her father introduced her to Boyz II Men just this morning and she loves “Solo” by the Nigerian artiste – W4. You should see her vibrating to the sound of it. It is quite ridiculous! She loves to ‘swim’ in her bathtub and because her legs are very strong and active, we have decided she will make good use of them as well as her love for water, and so she will start her swimming lessons soon. As for all the things I was worried that she would never be able to do; how wrong I was! I mean, even football! I was shocked to find out that there is actually such a thing as blind-soccer. And this is just the tip of the iceberg where possibilities are concerned.
Still on the subject of miracles though, I have to say that I do not want anything to do with a God who cannot take responsibility for physical (or mental) challenges in babies. That is not the God I know. The God I know is the Creator of ALL flesh. He makes these things happen because I suspect He is trying to remind us that the spirit is more important than the body. That is why He will not stop creating ‘imperfect’ bodies. It doesn’t matter how much we wish it away or debate it in prayers. We’ve got to learn that there is perfection in imperfection. It’s really just as simple as that.
So if you’re reading this and you know a family with a special-needs child, try not to make them feel embarrassed about the nature of their blessing. Don’t ask them silly questions or interrogate their relationship with the Creator. Don’t make them hide their children from you. You can be curious, you can even stare – it’s normal human behavior. But limit it, will you? Locate your sensitivity-button and just be cool around them. That autistic child won’t bite you. That child with Down’s syndrome won’t infect your child with it if they play together. And the deaf child might not be able to hear you, but he can see you – smile at him, he’s ‘normal’, just like you and I. What about the blind child? Try it with my Didi. Talk to her and rub her hand lightly and she will reward you with a smile. If she likes you extra-specially, she might even throw in a complete sentence of baby-gibberish. That’s how she rolls.
Finally, fellow parent, if you’re out there and your child has special needs too, I’m not asking you to rule out a miracle, but whatever you do, know this – God is not punishing you. He does not hate you. Don’t hide your child. Be proud of your child. Your duty is to connect with your child’s spirit and nurture it. Your duty is to help your child interact with this world in the best way he or she can and to reach their full potential regardless of what the challenges are. He or she will learn confidence or fear through you, never forget that! Also remember, we aren’t taking our bodies with us when we die anyway. The spirit is where it’s at! So let’s kick arse! Let’s show God that He didn’t make a mistake by trusting us with these special babies. Children ARE gifts from God. They don’t always come in the same wrapping, but they are all beautiful, they are all precious, they are all good enough.
Happy Children’s day!