Knowing Hope Inc

When I was a 20 something year old, my second job as a pediatric OT was working in my state's early intervention system. I would work there for a year, then went back for another consecutive 17 years after a year hiatus to experience life down south. Working there brought many incredibly meaningful relationships, including one which would impact my life forever. It was there that I met someone who would become one of my BFF's. My trusted and constant friend. My soul sister.

Over the years I would discover my friend and I shared the same heart for orphans. She began traveling to Russia, Siberia, and then China to volunteer in orphanages. I traveled back to China to volunteer in orphanages. Our skills as pediatric therapist and special educator were in desperate need. Orphanages around the world were full of children with medical and special needs. The caregivers needed partners to know how to best care for these children. Through our conversations and shared experiences, the idea for Knowing Hope Inc. was born. We envisioned continued outreach to orphanages through teaching and training. We would empower those "on the ground" with the skills they needed. As I continued to volunteer in China, the thirst for this knowledge grew and grew. We were asked if our teachings were government sponsored. We were were asked when we would be coming back. Invitations grew. The conference rooms were overfull. People were turned away as we needed larger space. And the word began to leak out into the community where parents, raising their children with medical and special needs, would attend. Hope was needed, and it was clear that somehow, through us, it was being given. It was given by partnering alongside with those who do the real work. The need was shown and clear. Trust had been built in an area where trust is rarely given. More needed to be done.

The purpose of Knowing Hope Inc is threefold: to provide education and training to those caring for children with medical and special needs; to provide palliative care/hospice services to the sickest of children; and to enable impoverished families to receive the support they need to obtain necessary medical care in order for children to remain in families. These purposes will allow us to serve our mission, which is to live to make a difference in the lives of orphaned and impoverished children by showing transformative compassion and care.

This past year has been a huge year of change, but one thing that has not changed was the desire to continue work that has been started. A year ago, Knowing Hope Inc was incorporated in the state of Massachusetts. This week, Knowing Hope Inc has been recognized as a 501(c)(3) by the IRS. Knowing Hope is officially a non profit. Dear, dear friends who have journeyed to China with us several times and led a team to China last year worked tirelessly on bylaws. We are now working fervently to get the logistics done such as get our website up and running, and are humbled by those who are asking how help can be given.

As I think back to all that has happened over the past 20 years, I am in awe of how it has all been unfolding. Our God has been in every single detail, each step of the way. He knew my soul sister and I, along with our dear friends, would make this happen. It is amazing to think of how each experience has been woven together to bring forth this very moment.

There is much to be done. Human lives are at stake. Life is way too short and in a blink time is gone. Live to make a difference. Little ones are counting on it.

Knowing Hope Inc
PO Box 72
Andover, MA 01810

For 28 Days of Hearts...CHD awareness month

It is better to be beautiful on the inside than it is on the outside. That was the theme of a fable my 11 year old chose to write for a recent school assignment. Oh, how I love her heart. Her beautiful, gorgeous heart.

Lianna is known by many to be wise beyond her age. She is my sensitive one. Her heart feels things strongly and she speaks from it. She always has. When Lianna was born in China in 2004, we were told she was very, very sick. She entered the orphanage being the size of a kitten. She had fresh IV marks indicating that her biological family loved her very much and sought treatment for their ailing daughter. Health care in the rural village area of China where she was born is rough. It is unclear if a congenital heart defect would even have been detected. Clearly she was sick and unable to keep fluid down. She was not growing. She was teeny tiny. And she could hardly open her beautiful brown eyes.

By the time we met her, she was 14 months old and had defied the odds of remaining alive as an orphan with an untreated Congenital Heart Condition (CHD). Specifically, a ventricular septal defect (VSD), patent foramen ovale (PFO), and aortic spectum (something her US doctors have yet to determine the meaning of). She was incredibly weak. She was unable to sit up by herself. Her head was sweaty. She gazed deeply at my first daughter and I as we played in the same baby room my eldest daughter had spent the first 9 months of her life in. One of the nannies plopped her into my lap and my daughter stroked her head. We were told she was waiting for surgery. We were told that they hoped she would have that surgery soon. I had no idea that the very first orphanage volunteer experience would introduce me to the orphan who would become my second daughter.

Two months after my eldest daughter and I spent a day loving on the orphans in her former orphanage, we learned that the baby with the big brown eyes, the baby who sat in my lap and seemed to beg me not to move her, the baby with the CHD who was frail and weak and sick, had had a successful heart surgery. She would be placed for adoption. Would I want to pursue adopting her? The paperwork race began and I took the leap of faith. The net appeared, just as the wise adoption coordinator said it would. She would come home shortly after turning 2, almost a year to the day when I first met her.

Before adopting my beautiful girl, heart disease had always scared me. Maybe, it's because my own heart was broken. Not in the literal sense, but because I failed to see the beauty of living in the here and now. I had clung to the future, and wanted those future plans to come true. I wanted guarantees of a long life. I had always thought I wanted close to "perfection", erroneously thinking that it would ensure the guarantee. I wanted something that is not guaranteed to any of us, whether born with congenital heart disease or not. The doctors at Boston Children's Hospital have said that Lianna's heart surgery was done exceptionally well. "It was as if it was done here", I was told. Currently she is monitored for a mitral valve regurgitation, which has been stable for several years. Heart disease is not as scary anymore. We are living our lives and she continues to teach me lessons I need to learn.

My heart girl reminds me to live in the present while looking with the heart, because her heart is that beautiful. She looks with her gorgeous heart each and every day. She finds the beauty in all people, young and old, strong or weak, special need or not, homeless or homeowner. She seems to see that true beauty that is found in all imperfect people. A true beauty that is only found on the inside. And she radiates that same beauty for all the world to see. How lucky am I to be her mother.