I was wrong

I am just back from four days away with Princess and her grandmother, Gloria. We took her to Kampala for some extensive hearing tests to determine the exact level of her hearing loss.
Over the past few days, I have learnt a lot about Princess, a lot about Gloria, and a lot about myself.

I’ve called this blog post ‘I was wrong’ to help me tell the story.

I thought it was in my power to do something to heal her, I was wrong.

Since the day I met Princess, I knew she was ‘deaf’. I knew that if I spoke to her, she couldn’t hear me. I knew that if I made noise behind her, she wouldn’t turn around. But I never thought she was actually deaf deaf. I believed that something could be done for this precious girl to make her hear. There is no history of deafness in the family; there was no trauma or illness during pregnancy or birth. So how and why is she deaf?!  And what could be done to help her?!

I knew that coming for these tests would give me answers, which is why I was actually really nervous about the trip though I didn’t admit it. I feared an answer that I absolutely did not want to hear.

I got that answer.

I was devastated, and so was her grandmother.

On Thursday morning, after a good night’s sleep and a good breakfast, we went to a hearing centre run by the UK charity Ian Hutcheon Clinic for Children, which provides the only free service of hearing testing and hearing aids for children in the whole country.

After initially being a bit nervous and seeing two new western faces, Princess warmed up and did some puzzles with the audiologist (‘bonding’ before the audiologist began the tests!). Unfortunately, Princess wasn’t very co-operative when the hearing equipment came out, and she didn’t react kindly to things being put in her ears or attached to her head!! It was decided that they would give her a sleeping tablet to make her sleep, and then they would do the tests while she was sleeping. After about 20 minutes, Princess fell asleep and the testing began. They basically put sounds of different volumes and pitches directly into her ears, and then tested the brain reaction to those noises. Essentially, Princess is profoundly deaf. Even with the highest volume sound that the machine could produce, absolutely no brain reaction was detected. She can’t hear a thing. She wouldn’t hear a bomb blast. No hearing aid will help.

We were told all of this, and I just wanted to burst into tears. I suspected, but I had hoped and hoped and prayed and prayed that the outcome would be different.

The audiologist asked grandma ‘what did you expect when you came here today?’ She answered, ‘I expected that you would make Princess hear. I thought we were bringing her to make her ears better’

Argh. Was I wrong by bringing her? Have I set unrealistic expectations? Have I disappointed the grandmother even further?

Everything was explained to her, and I think we left when grandma was feeling okay.

I prayed for a miracle and I didn’t get it. But I won’t stop praying for one, and I ask that you don’t either.

I thought Princess’ grandmother didn’t care about her, I was wrong.

I have known Princess, her grandmother and the family for almost a year now. On my twice weekly visits, I have been creating opinions and judgments about the relationship that Princess has with her grandmother. I have often been critical and often disparaging about it. I was wrong.

I saw a lady who didn’t interact with her deaf grandchild, a lady who didn’t care about her, a lady who wished that Princess wasn’t around, a lady who locked her away and kept her hidden.

I was SO WRONG.

In fact, Gloria is a lady who quite frankly has far too big a burden to bear. Her husband, the sole breadwinner, died two years ago. Her oldest daughter produced a deaf child when she was 15 years old and left soon after. The father of Princess ran away and never returned for fear of being convicted of having sex with a minor. She has five children at home who she has to walk around and find food for on a daily basis. She doesn’t earn a single coin but has five children to feed, clothe and house. Gloria really doesn’t have the emotional or physical capacity to spend the hours playing with, interacting with, and showing the love to Princess that she needs. How did I judge her so harshly?

Of course she loves Princess. Of course she wants her to be okay. She locks her in the house to prevent her being raped (true story among vulnerable children with disabilities).

Over the past four days, I have seen Gloria relax, knowing that there will be food and shelter. I have seen her have physical and emotional capacity to ABSOLUTELY LOVE ON PRINCESS. And Princess has absolutely loved it. She has LOVED having the full attention of her grandmother. She has laughed and played with her. I think even Gloria has been shocked about how amazing Princess is. She colours in the lines, she copies when we draw a circle or a line, she learns signs SO QUICKLY (though the sign for driving a car became the sign for absolutely everything). We have all been quite frankly amazed by what Princess can do.

My prayer is that now, back to ‘normal life’ both Princess and her grandmother can continue to develop the bond which has really strengthened this week. I pray that grandmother can see the real benefit in giving Princess time and attention, and that Princess can truly know that her grandmother cares about her.

I thought I knew what was ‘best’, I was wrong.

So, on Thursday evening, after a long day at the hearing clinic, I thought it would be a good idea to take Princess and Gloria out somewhere for a treat.

Anyone who has been to Kampala and is reading this will know about Café Javas. It’s my ‘treat’ when I go to Kampala – milkshakes, burgers, pizzas – western food at western prices.

I really wanted them to try some western food – the food that I loved the best. I thought they would love it too.

I was wrong.

I’m actually laughing as I type as I remember the evening.

We arrived at Café Javas and were seated. Neither Princess nor grandma were too impressed at the air conditioning in the place. Obviously grandma couldn’t read the menu, and in fact we couldn’t communicate at all, so I just ordered what I thought they would like. Chocolate chip cookies and smoothies. Where could it go wrong? Princess had pointed at the smoothies on the menu and given the thumbs up.

The food and drinks arrived and I kid you not, Princess tried both the biscuit and the smoothie and literally wrinkled her nose and pushed them both away. This is the girl who eats ANYTHING and EVERYTHING – in abundance. She completely refused. Basically, the whole trip was a distaster.

I ended up getting the things in take away containers and enjoying them myself later in the evening.

On reflection, I have to humble myself and realize I can learn a lot from this. I wanted them to have a treat and stay in a nice hotel, without thinking that neither had ever used a toilet or a shower before. I wanted to take them to a nice restaurant to eat ‘nice’ food, without thinking that they may actually not like it at all. Maybe I was actually being selfish because I wanted to stay in a nice place and I wanted to eat nice food.

NB Apart from that trip to Café Javas, they actually loved all the food, lol.

I thought no place in Uganda would be good enough for her, I was wrong.

I think that being with Princess over the past year has given me a glimpse of what it’s like to have your own child. You never, ever want to see them sad or hurting. You only want the very best for them, etc.

When I heard Princess’ diagnosis, I asked the audiologist ‘so what does her future look like? She needs a place which is loving and nurturing. A place where she will really be looked after’

The audiologist recommended a school in Masaka (between Kampala and Rukungiri) which is widely known as the best school for the deaf in Uganda. It is a Catholic School called St Mark V11 School for the Deaf.

We decided to pop in and visit the school on our journey back to Rukungiri on Friday. I wasn’t particularly hopeful but I also knew that Princess would need to go to school somewhere!

We arrived on Friday evening and it just felt right. We met the headmistress, Sister Angela, who was lovely and immediately struck up a rapport with Princess. It’s not easy to get a smile from her within two weeks of meeting, let alone two minutes! We spent some time talking to the Sister about the school, its children, the needs that it meets. Sister Angela assessed Princess’ history, looked at her physical and academic ability, and together we discussed her diagnosis.

I have spent months looking at Princess and thinking that, despite being 5, she looks so small and young to go to a boarding school (which all deaf schools are). I have also seen the condition in which she lives and thought that the longer she stays away from a school where she will be taught to communicate, and learn, and mix with peers who are in the same situation as her, the harder it will be for her to pick up later on. I expressed this dilemma to the headmistress and she really calmed my fears, and said that there are children younger than Princess there doing well. She was impressed that Princess can already hold a pen and copy simple shapes like a circle. She was impressed that Princess can already shake hands, do a thumbs up and wave hello and goodbye. She said that Princess would be just fine.

She gave Princess an admission letter for January!!!!

For the 132523th time this week, I wanted to burst into tears.

From absolute disappointment in her diagnosis, I saw some hope in a lovely school fit for a Princess. I asked grandma what she thought, and she said she would be very happy if Princess could go there.

January though!? It seems SO soon. Please pray for me, for Gloria, for others I am working with, as we make big decisions about Princess’ future.

I was wrong about many things on this trip.  I don’t always like to admit my failings but here are just a few of them.

But one thing I’m right about? Love always wins. I remember going back to my home church in Chiswick at Christmas, soon after meeting Princess. I asked desperately ‘how can I make a little girl who looks so lost and lonely know that she is so very loved.’ It’s still a journey, but I guess perseverance, patience and time. A few steps backwards but always one extra step forward.

Love always wins and I will love this child every day for the rest of my life. I know that SO many of you love her too. She is not far from many people’s thoughts. Thank you.

The trip was so special. We all had a blast. We experienced new things, we saw new things. We were disappointed and overjoyed. We were sad and hopeful. We saw a girl who is cheeky and intelligent. We saw a girl whose mood changes in a second. A girl who loves to eat (anything but Café Javas). We saw a girl who likes dresses, colouring and being cuddled. We saw a girl who is completely and utterly gorgeous.  We trust more than ever, despite the disappointments, that God has a plan for Princess and her life. She is fearfully and wonderfully made.