Glass Half Full..
Imagine if God walked into a labour ward, filled with women in various stages of crazy and said, “Order! I am recruiting. I need volunteers. Would anyone here like to have a special needs child?”
I am sure someone would shout, ‘Get behind me Satan’ from the corner of the room. God would be ignored and the labourers would continue — oblivious. I suspect this is what happened on the morning of 08/09/2014. When no one volunteered, He chose — Me.
I was only 21 years old and 42 weeks pregnant; discovering the world through adult eyes. I had carried my pregnancy with ease and bliss. If there was a time I felt the most beautiful, it was when I carried this first pregnancy. I was admitted in early labour and I progressed uneventfully until I got to 10cm. Then I became numb. I could sense the need to push but I couldn’t feel the contractions. I was on the delivery bed, huffing and puffing for an hour plus. My sweat covered all my senses. It stung my eyes, filled my nose and tasted bitter. And still no matter how hard I pushed or thought I pushed, *Neil took forever to come out.
When he eventually did, he looked like ten miles of bad road. He was blue and floppy. And he did not cry. The room was suddenly filled with doctors and nurses trying to resuscitate him. I felt my body leave my body. Too exhausted to take in what was happening. I closed my eyes and probably my ears as well. My mum later told me he eventually turned pink but only managed a sigh. This earned him a poor score. What a way to start off in life!
He was taken to the ICU because he remained unresponsive. There were several tubes going in and out of his body. They said his brain had undergone some form of insult during the birthing process. I later learnt the term for this: Birth Asphyxia. So I went home without a baby. A hard fact to reconcile. Especially for the nanny who was eagerly waiting for my bundle of joy. When I got home with no bump and no baby she assumed he had died. Because what mother leaves her baby at the hospital?
Things were happening too fast for me. How did I end up here? I felt like I was underwater, my body moving like a piece of seewead along the ocean floor. Back at ICU, he remained still. So we waited. I would be up and in the hospital by 6am everyday. To stare at my still baby. I started to make friends to pass time. I spoke to all the nurses, knew them by name. Then I got to know the other mothers. I would chat with them from morning to evening. We would share our struggles and celebrate our wins. One day, after two weeks Neil woke up and cried and we were moved to the nursery.
I remember those days and laugh. He was the most chubby baby there; wall to wall in his incubator. All the others were tiny premies. He stayed there another two weeks and we were finally allowed home. On the day of discharge, my husband and I had a session with two paediatricians.
“Your journey with Neil will be different. You need to be prepared and know that he will have delayed milestones. He will need lots of therapy in tandem with his medication.”
“Ok.” That’s all we said. I guess because at that point I didn’t fully grasp what we had been told.
I thought to myself delay is not denial. Not all of us run at the same pace anyway. So what if Neil didn’t have a social smile at 2 months? He would smile at 3 months right?? I created a strong, taut bubble and moved in.
The first few months with Neil were a mystery. We played guessing games with him because he was a silent lamb. Most mothers complain about children who cry so much or cry a lot at night. Neil didn’t. He would wake up in the middle of the night and look around then go back to sleep — hungry. He never made a sound. It’s like he did not know how to cry. I had to actively wake up to check on him and feed him. For sure God in His wisdon knew why he invented crying as a means of communication for babies. I needed to tap his heel three times a day to get him to cry. The most he would do was whimper and then retreat to silence. This was not part of the script. Still we figured he was just late to the party and would soon catch up. Until we were introduced to her.
A paediatrician whose name and face is carved in my brain. A friend who was well versed in medical matters insisted that we should see her to give us a comprehensive diagnosis. And she did. Remember that balloon I lived in. She didn’t burst it. She blew it right open. Looking back I think she assumed we had already been given an idea of what Neil’s problem was at birth. She examined him and blurted out the words, ‘Severe cerebral palsy.’ She then recited a poem titled, ‘He will never’ and made a list of the things Neil would never be able to do. Her words dropped between us and all I could do was stare. I was so angry. At her. At the world. But in reality, she had told us the truth — but in the most brutal manner.
Tears became my food. I cried so much I couldn’t focus at work so I took a break. I grew sour with each passing day like curdled milk left in the heat. I was so broken I went on a spiritual crusade. Attended overnight prayer meetings and healing conventions. I would carry Neal and ask all and sundry to pray for him. I refused to believe that this was going to be my life. Denial is a twisted, draining soul thinner.
Therapy was another challenge. It was beginning to drain us financially. I tried to research for local solutions or foundations and would only find links that were overseas. Once a therapist came to our home and saw my son and said, “ If I lay my hands on this child, he will be well in a month.” From what I had read about cerebral palsy, I knew that wasn’t true but desperation knows no truth. We gave him a shot. And after a month, Neal was the same.
Then came the hospital admissions. In his 6 years of life we have been in hospital more times than I can count. For seizures, constipation, reflux and my all time favourite pharyngitis. If I had a nickel for everytime I was told Neal has pharyngitis, I would be on vacation on a beautiful island.
Realisation is a slow boil. I began to notice that I was spending all my energy dwelling on all that was wrong with Neal and this illness. I slowly unplugged the music to my pity party, threw out the negative vibes and changed my perspective. This didn’t happen in a day but the process of acceptance became the sandpaper that smoothed the thoughts of bitterness and denial away.
When I attended clinics, I began to look out for any mothers of children with cerebral palsy (CP). I stalked them and interrogated them on their journey and where I could get affordable therapy. I started to be positive about our admissions so much so that I had a certain spot in a certain hospital that I would book whenever we got admitted. Paediatric wards are full of sick mothers. It’s not hard to find a mother brooding in the ward while her child runs amock in the hospital corridors. I saw this as an opportunity to do what I do best. Cheer them up and encourage them. As humans we want to be heard, and when someone does the hearing we feel a connection to them. I made many such connections especially with new mothers of children with special needs.
Neal is now six years old. He has the most contagious social smile; a happy child on wheels. We have established a system of communication that works so we are not shooting in the dark. He has a 2 year old younger sister who loves him. Having her, healed us in a way. We felt absolved that what happened to Neal was not our fault. Even at her age, she can tell that we take care of him and she participates faithfully in the care of her brother. When we observe her, every little thing she does feels like a miracle for us. So we tend to let her get away with a lot. On Sunday evening she took all the rolls of tissue in the house and unrolled them. I was livid. Then I thought, ‘Thank God her motor skills are developing.’ I rolled back the tissue.
Once when we were outdoors, a child approached Neil — I think out of curiosity and her mom was quick to shout, “Don’t touch him.” It makes me wonder whether people feel disability is contagious. Whenever I get the chance,I try to teach other children that there are people who are different and we love them just the same. I wouldn’t want us to encourage the next generation to stigmatise children with special needs. In the past it has been so. Some even hide their children out of shame. Yet their journey would have eased ours if we knew of them. I have since joined several support groups that we hope to bring together under one umbrella in order to strengthen our voice.
I have now changed thoughts that used to start with, ‘I wish, I regret, I should have’ to ‘ I am thankful for.’
And this is why I believe God chose me. I searched really hard and realised not only did He choose me, He equipped me with everything I needed for this journey. My personality and my spouse — who is an outdoor specialist — fits just right in this puzzle. He is exactly what Neil and his sister need. It’s just that people focus so much on the empty glass and miss out on so many blessings. It is only through acceptance that one experiences various shades of happiness. I know it, because I have.
As narrated to me by Joyce Wanjohi
Cerebral palsy is a disorder that causes problems with movement, tone and posture. Babies with cerebral palsy are often slow to roll over, sit, crawl, or walk.
The symptoms of cerebral palsy can be mild or severe and are present for life. But the disorder does not get worse with age.
They include:
●Trouble drinking or eating with resultant poor weight gain
●Acid reflux
●Lung infections or pneumonia
●Trouble thinking and learning
●Problems with hearing and speaking
●Trouble seeing
●Seizures
●A curved spine
●Problems with bladder control and constipation
●Pain
A healthcare worker may be able to tell if your child has cerebral palsy by doing an exam and learning about your child’s symptoms. But doctors can’t always tell because children develop at different rates during the first 2 years of life. He or she might refer you to a specialist to help find out if your child has cerebral palsy.
Possible tests include:
●An MRI — This is an imaging test that takes pictures of the inside of the brain.
●An EEG — An EEG is a test that measures electrical activity in the brain and records brain wave patterns. A doctor might do this test if your child has seizures.
Cerebral palsy has no cure. Treatment is symptomatic. These include:
●Medicines — that help treat symptoms such as stiff muscles, unusual body movements, or seizures.
●Equipment — These include devices such as leg braces, walkers, or a wheelchair to help your child get around.
●Nutrition — Some children need special diets to help them gain enough weight to be healthy. Some children need to get some or all of their food through a tube that goes directly into the stomach.
●Surgery — For children with very severe symptoms, doctors sometimes do surgery to put the child’s legs or arms into a correct position.
