by Nilam Agrawal
I wrote this poem in May, 2012 when my daughter was 2 1/2 years old. She was acutely sick with H1N1 and had to be intubated. She went from being a sighted child, to suddenly losing all of her vision in both her eyes (she started losing her hearing 6 months before that due to an episode of high fever). For 3 long weeks she was in a world of total darkness and total silence. Then, she began to see in low lights and regain some of her hearing. That episode was a new turn in our journey. My husband and I were hurting and nervous. She was scared and lost. We had no idea what help we needed or how to support her. I wondered, if she could say what she was feeling, what would she say? I wrote this poem to help me find a purpose and find something to hold on to when I was struggling to even breathe. For the next 5 years, we went through two different medical (‘mis)-diagnosis before receiving the correct diagnosis of Usher syndrome for both our kids in December 2017 (a decades-long medical journey that started with our older son in 2007).
O’ Angel of Mine!
She came to me with questions in her eyes,
as if she wanted to say,
“O’ mother of mine,
Why can’t I see the bright sunlight?
The flowers bloom?
The butterflies fly?
Why is there so much darkness all around?
Where are the stars, the moon can't be found?
Did the little bird in the garden finish her nest?
Are the trees still green? Is the sun still round?
Why do I feel so lost?
I am confused, the world is dark!
I am surrounded by questions, where am I?
Where did everything go?
Tell me, O’ mother of mine!”
I hugged my little girl,
I wiped her tears,
‘Don’t you cry,
Honey, you are in a better world,
The butterfly is YOU,
for your imaginations can fly...
There’s nothing fun about the sunlight,
And who said that the trees have to be green?
Don’t you ever say you are lost,
It is untrue and very mean..
You have been found by the god,
For he said that you need to see the world from his eyes,
So that you don't get caught in the web of lies,
He gave your soul eyes, and made your eyes blind...
Now you can see what we all can't see...
For you will see beauty of the soul, and not the body,
For you will see kindness of people, and not the money,
And you will taste the sweetness it adds, but not see the honey...
You will feel the beauty of the nature,
The colors of the flowers will be filled with your dreams,
You will be the little pixie dancing in the Neverland
You will guide the current, and captain the boats in your stream!
Don't you waste those precious tears of yours,
They are far more precious than all the jewels,
They open the door to your heart and soul,
Only let those who are worth it, to come that close!
Shed your tears when you feel betrayed,
Cruelty, prejudices and hatred...
These are emotions you don’t need in your heart,
When you feel these, shed a tear and melt it off!
I want you to make a difference in your life,
I want you to make a difference with your life,
Not a big change in the world, just small things,
Touch a life and make someone smile, one day at a time.
For you are God's special child,
For you are an angel of mine,
For you have winds beneath your wings
Don’t be scared, just fly and fly!’
She smiled, gave me a kiss, looked up and said -
‘Why are your cheeks so wet?’
I was embarrassed but I confessed,
‘Little one, I don’t care about the trees, moon, or the sun's shape,
but I do hope that you will remember your mother's face.’
- by Nilam Agrawal
Usher syndrome is one of the most common genetic causes of combined deafness and blindness. More than 400,000 people are affected by this worldwide. There is currently no cure for Usher syndrome and there’s a lot that we still don’t know about it. This is why we advocate for research and cure. To read more about Usher syndrome and to support the efforts please visit https://www.usher-syndrome.org
Being a first generation immigrant in the US; raising medically complex children, creating a support system, community, and learning about medical and educational processes have been herculean tasks for our family. We could not have done it without the help of family members, advocates and deafblind family organizations. We are very thankful to each one of you for supporting us, sharing resources, and joining us in advocating for research and a cure.
Nilam Agrawal is mother to two children who are diagnosed with Usher syndrome. She is Board Member and Co-Chair Outreach- NFADB, Ambassador- Usher Syndrome Coalition, Board Member- Lane of Inquiry, and F2FC co-facilitator for the Proficient Communicator Family Support Group. Nilam also manages a private FB group - DeafBlind with Dyslexia, which was started with the motivation to bring families together and share resources. She enjoys photography, traveling, painting and old classic music.
Lanya (Lane) McKittrick is the Chair of the Board of the Usher Syndrome Coalition, founder of the Hear See Hope Foundation, and deafblind education researcher and founder of Lane of Inquiry. Lane received her PhD in Special Education at the University of Northern Colorado. Her research, advocacy and family support work are rooted in her personal experience as a mom to four sons, including two who have Usher Syndrome, the leading genetic cause of deafblindness.