Wednesday, September 18, 2013

My Dream of Hope's Seed

“You have turned for me my mourning into dancing; You have loosed my sackcloth and girded me with gladness.”  Psalm 30:11

When Mighty Z was born, I mourned not just that fact that my child had a horrible disease and that I was told she wouldn’t make it to her first birthday, but I also mourned the friends and family I lost. Frankly, nobody knew what to say to me and at times people still don’t, and so many times they just stay away from me in hopes that they can avoid any awkward situation with me. I remember sitting up in the NICU (Neonatal Intensive Care Unit) and feeling completely and devastatingly alone.

The Devastating Silence

Of course I had my mother, father and one of my aunts who came up to show support, but even they didn’t know what to say. What do you say to a new mother who has been told there is no hope and all she can do is trach her beautiful baby, place her on life support machines, and pray, always pray, that she would survive?  I remember that traching Z was the hardest choice I had ever made in my 25 years of life and I was devastated, and nobody knew how to comfort me.  I think that if they had told me that all would be well, I might have gone over the edge because nobody could understand how hard it was.
As the years flew by and I had adapted to having a child with a trach and on a ventilator, we stilled graced the PICU (Pediatric Intensive Care Unit). I began to look through the slits in the curtains that separated me from other mothers with children who were also fighting huge battles, and slowly a little seed started forming in my heart. I thought to myself Wouldn’t it be wonderful if I knew these other women who are also going through exactly what I am?

My Dream


I went home and I began to dream, to dream of an organization that would bind parents of special needs children together, to help mentor one another, help pray, and understand what this new world was about.  I had a burning desire that other new mothers who also had to trach their babies, place them on life support machines, or place tubes in their babies’ bellies, or have to have their babies fitted for power chairs would have the support of other mothers who had to go through the same thing so that they no longer felt alone.

Turning My Dream To A Reality

I tried for years to create such a group but every time I couldn’t get off the ground. I prayed and prayed that God would show me how to start it yet it felt like He wasn’t listening. Last December I was asked to start a local chapter of a national group that supports special needs moms.  I was told I could make it whatever I wanted; however, my ideas far surpassed the ideas of the group.  I wanted more; I wanted to empower other mothers with these special little miracles to go back up to the NICUs and PICUs and let the new mothers see that they were not alone.  I wanted to create a bond of friendship so tight that when one of our own babies was in the hospital, we would visit each other in order to fill each other’s cup full of hope.

Not So Easy

The national group didn’t want that. Their vision was strictly online and although that is so important, I wanted, no, needed, the face to face friendships. Then God sent me a friend– someone who also had felt the desire to make sure that others didn’t feel alone like we had.  Emily Minich and I began to talk and share with each other our dream for such an organization.  You see, what God was waiting on was for me to meet Emily.  I needed my other half, so to speak.  Everything I am not good at Emily is amazing at, and vice versa. Once we launched our group there was no holding us back.  God began to bring people in to the group; He aligned people with the power to get us into the NICUs and PICUs who were thankful for our presence there.

Friendship And A Vision

Emily and I named our group Hope’s Seed, because what we wanted to do was plant seeds of hope into the mothers of special needs children, so that these women can know that there is always hope and that they are no longer alone, that we will help pick up the torch in the darkest night and show them that the way is full of light.
You see, God did turn my mourning into dancing.  He gave me friends that finally understood this new normal world that I was made to live in.  He took off my sack cloth and girded me with gladness and giggles.  

Hope’s Seed Grows

My friends at Hope’s Seed always know exactly what to say no matter what the doctors tell me. They are not frightened by machines and alarms. Trachs, ventilators, G tubes, power chairs, any trisomy syndrome, autism spectrum, and mental health issues are common among us and they bind us closer together as a family. We have all learned to see the beauty in the special needs world and now are more partial to it than the regular world.
Hope’s Seed mission is simple that no mother is left all alone with no hope in any part of this journey. We want to be that person who helps carry this weight, and we want to be the one who gives you the tools you need to walk this road. We are the people who want to plant seeds of hope in you and let you know that you are no longer alone.

edited by Emily Joy Minich
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