Monday, 27 March 2017

Journey to NOAHCON 2016:: Meeting the founder


I had numerous brief encounters with NOAH'S founder. While he made himself readily available there were just so many people to be available to so I am very grateful for the moments of meeting I had with him.

I was there relatively early at the start of it all, one the first day of the conference when things were not yet moving at break neck pace for the organisers. As a result I got to grab him for a photograph and set up an interview at his earliest convenience.  It wasn't till the end of the conference at the meet the funders session that I was able to sit with him and have a quick talk.

During our interview we discussed:
- Why you should go to a NOAH Conference.
- The reason behind the creation of the conference.
- It's importance to past, present and future attendees.
- The importance of NOAH attendance to parents of and people with albinism.

I was blessed to be able to get the entire interview on tape.

Some of the advantages to attending as suggested by the founder include:
  • People with albinism experiencing life a little bit differently, the conference is a community that recognises and plans events with this in mind.
  • There are other people who are going through the same thing and that community can help validate the experience of living with a rare condition.
  • Attendees can gain information about the condition.
  • Attendees can learn tips and tricks to help navigate the fully sighted world.
  • Attendees can gain information about the services and needs of your child with albinism.
  • Attendees can gain assurance that your child will grow up to be a fully functional member of society.
  • Attendees can learn how to deal with the years of the unknown for your child and for yourself.

I will never be able to bullet point every reason for as the founder himself proclaims, it's hard to explain outside of experiencing it. It is my hope that my encounter with him will help all involved to learn more about the conference and gain any knowledge they might need to help make a decision as to whether they should attend or not.



I will be bold enough to suggest that the answer, more likely than not, is yes.

Saturday, 18 March 2017

My Word of 2017 || #TrustTheProcess



Last year I knew my word of 2016 pretty early in the game, it came at me like a whisper on a wind. This year with my impatient self I looked for my word of 2017 sneakily around every corner. I didn't want to let go of Victory, we had become so close! It had been so very good to me. I didn't want to short change myself either by holding onto feelings that need to be let go.

Eventually I had to calm myself down, you can't trick God after all. I wasn't fooling anybody trying to sneak a look around the corner and into the future.  So I had to constantly be mindful of my impatience, quiet my mind and let my word come to me.

It was not an easy thing to do. Before I knew it December was already almost gone and I still wasn't sure. I began to have conflicting feelings about two words. One I wanted to believe was mine and one I was feeling prodded by but didn't understand why it would expect me to trust it.

Let me explain.

On my road with Victory in 2016 I felt like that other word was journeying with us, I brazenly would venture to say I mastered that other bit already in the only way I could imagine that other word was asking me to use it. So, i decided to do my own thing I suspect, deep in my heart. I figured the other word that i felt I wanted to go with understood me better and where I wanted to go moving forward.

I was in the middle of a tweet in early Janurary, thinking back on the events of the day and how they had enlightened me when one of the suggested hashtags was #TrustTheProcess and I swear it hit me like a ton of bricks.

I would have sworn Trust was asking me to Trust God and I just couldn't understand why after the triumph of running with Victory all throughout 2016. To be honest I was almost insulted, I felt like I learned to dispense some remarkable doses of trust in the face of adversity, being unsure and doubt (read more of that here) so of course I sought out my dictionary to see what on earth I could be missing.

It wasn't till I was in the middle of that tweet though that I got it. I was being too small minded, I wasn't being asked to simply trust God, it was so much more whole of a thing. I was being asked to trust the process, to trust that everything is working together for my good. It is not just enough to know that I know what I am doing but I must Trust that I know what I am doing. I must Trust my ability to be great even while I am already being great. I must pour that faith, after pouring it into my God, back into myself. Trust that everything has led to this, Trust that He orders my steps, Trust that I must make these steps in bold confident strides.

I am tempted to say here we go again because just as I began with Victory I know this will not be a smooth go of things. I have some intimidating big decisions to make this year, decisions that are not going to get smaller as I get older. However I have also been granted an extraordinary sense of calm with this word. A calm I also must trust is real and not just the eye of the storm haha

It's gonna be a big year 2017! Ready for the jump off?! Too bad because it's already a quarter of the way behind us. Can you believe it's taken me a quarter of the year to share this word with you?

Lean with it, rock with it, Trust fall into it!  #TrustTheProcess What's your word of 2017?


Ready. Set. Jump!

Monday, 13 March 2017

Journey to NOAHCON 2016 :: With Hands Just Like Mine.


When she walked in she looked just like I felt. Nervous, scared, excited, confused, anxious. I was a grown up sitting with my hands crossed in my lap. She was being guided around by grown up. She was staring at her fingers, tying them and untying them in front of her.  Her guide led her to me.

She said she was from far away. 
I said me too. 
She said she gets a lot of snow where she comes from 
I said I get none where I come from. 
She is from Canada 
I am from the Caribbean. 

She told me about Canada, the rains and the floods and the snow. With excitement she shared with my and her voice got stronger and braver with every word as 'really?" I said 'waw' I said. She went on with flamboyant hand gestures explaining.

I told her about the Caribbean, the heat and the trees. While I was talking she took up a lock of my hair, held it up to her own and said 'hmmm...just like mine!' I said yes and with a heart so suddenly full I wonder how I remembered how to use words then, I showed her that my hands were like hers too. 

She was so shocked, her jaw dropped open and her little sapphire dress made a wide O around her body as she stared. I was too, I was shocked too but this time, I was a little better at hiding it. 

She squealed with excitement and joy, gave me a huge hug and ran away after changing my life forever. I'll never forget that moment with that child's pure, unbridled affection for a person that looks like you. I understood for the first time after her that...a baby of my own with albinism would not be so bad. It would not be the atrocity the world around me tries so loudly to convince me it would with every negative word they pitch or every unavailable opportunity. It would be a baby...with hands...with ten fingers and toes and joy just like mine. A baby that despite hardship could find joy in the world just like I have found it in the trees, in friendship, in overcoming challenges, in travelling and in faith. Just...a baby, with hands just like mine.

Don't get ahead of yourself their my stance on birth hasn't changed. I'm just saying that for the very first time I realised...no I always knew that everyone was wrong but for the very first time I held just how wrong they were to my chest, felt her heart beat, listened to her laugh and thanked God she existed. All in under a minute.

Lets get back to our story.

This was my first exchange at the NOAH conference. Just a little girl under the age of ten and a grown woman far from home, both never in a situation like this before, both feeling shy and overwhelmed about it. 

On the first night I went to the opening ceremony and the founder told us that we would cry, he told us that we would have a sensory overload. I didn't really believe him.

Then we were dismissed and I stood in the doorway by myself. I'm a very shy girl and I stood there marvelling about how shy I was in a situation I had dreamed about being in for so long. I could hear Mike in my head chastising me when we first got there at the hotel, I had refused to go up to someone I knew from facebook and had to physically stop him from loudly drawing attention to me. 'This is why you're here!' he had said. I ignored him then, as I usually do. Though I did hear him. There I stood hugging my fear tight and watching beautiful people walk right past me. This is why you are here I reminded myself.

People who looked just like me and nothing like me all at once filled the room and emptied it and filling it again. People with afros and dark lipstick and guide dogs and canes and babies, the babies owned the room!

The babies were being thrown into the air and caught. They were discovering every inch of the floor including the corners. They were vulnerable but bold, independent but calculating every step of their environment one step at a time. Their parents were watching in awe as their babies took life by the horns with no fear and we all truly lived in that moment, in that room together.

My eyes caught on a girl with a mane of curly blond hair and dark lipstick and I was struck by how gorgeous she, so struck in fact that I forgot I was staring and only realised it when she walked right up to me and said 'You're beautiful' smiled and walked away. I have been told I am beautiful often so it wasn't that I had heard it for the first time. Parents, tell your children they are amazing, this will set the tone for the rest of their lives and they will never be shocked when someone else says it to them. When she said it, this woman that i had been staring at my heart kicked because it was her and I saying to each other that we are more than skin and difference. We who looked the same but nothing alike.... I needed to sit down. 

Not before I found that facebook friend I had been too shy to say hello to by the way (hey Kadie, hey Ariel, hey Gabrielle)


Then I found my little friend again for a picture. By this time she had made a friend her age and they were wrestling. I mean full blown, belly laughs, rolling on the floor, they were born to meet and share stories bonded. 


I met a girl in a sapphire dress with a generous smile, bright eyes and a big heart and she made me weep. I met a girl who hasn't been alive for long but who has struggled and twirled and been brave and reminded me to be brave by her willingness to do just that very thing. I met a little girl with hands just like mine and I am so glad she said hello to me. 

She was my first little friend at the conference and honestly everything went great from there. She reminded me that at the core of it all, this moment was meant for all of us to meet, to come together and appreciate every thing that makes us different and the same as people with reckless abandon.

This is why we are here.



 To be continued
Check out more from this series here 1 and 2
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