Diary of a Dreamer: Chapter 9
by Laura O. Moore, BSN, MN
Founder and CEO of Dream House for Medically Fragile Children, Inc.
Born to Do This
At the age of three, all of my dolls and stuffed animals were homeless and needed to come home and live with me. Since then I have had the desire to work hard to learn everything I can about taking care of children so that I could help ‘the least of these.’ From age ten, I babysat for friends and neighbors every chance I got, worked in a daycare after school, worked at a pediatrician’s office on Saturdays, and served as a volunteer Candy striper at the local hospital on Sundays. When I graduated from high school I decided to pursue a degree in nursing so I could learn as much as I could about how to address the holistic needs of children.
Upon graduation I accepted a staff nurse position at Egleston Children’s Hospital, now known as Children’s Healthcare of Atlanta at Egleston, and cared for children on the cancer unit, post-surgical unit, trauma ICU, and neuro-rehab. Four years later, after having two children and completing a Master’s Degree in Nursing Education with an emphasis in adult learning theory and curriculum development, I still was not sure if I knew everything I needed to know.
How The Dream Began
The purpose of my life became much clearer one night when I was eight months pregnant with my first child. I had a dream. This dream was so real, so overwhelming, that I woke up crying, panicked, and unable go back to sleep. In this dream, I could see a vision of what I was to accomplish. I knew without a doubt that it was a vision from God. (My husband did, too – he says God can only talk to me through my dreams because it is the only time I sit still and am quite enough to hear Him!)
Although convinced of the authenticity of the vision, the overwhelming nature of it scared me so. There I was, pregnant with my first child, after all. I had no parental experience. How could I create a program that would help teach others how to care for their children? I felt I needed experience raising my own children before I could tell others what to do. I pleaded for more time and spent the next 14 years further developing my knowledge, skills and connections. Thank you to my children, Hayden and Anna, for giving me some truly great experience!
One night, while sitting around the dinner table with my husband and children, we began a conversation about what Hayden and Anna thought they wanted to do for a career. During this discussion, Hayden looked at me and said, “Mom, we know what you want to do. We also know you have been waiting for us to graduate from high school before you get started. But we want to help you and do it as a family.” Oh my – out of the mouths of babes.
Unsure of the depth and scope of work and sacrifice we would experience, we pledged that night to help each other and begin the journey of what we now call ‘Dream House for Medically Fragile Children.’
Super Katie, the First Dream House Kid
My family and I have since fostered six medically fragile children, provided respite care for another six, and adopted one of these – a very special one. Her name is Katie. Diagnosed at birth with Pseudo-Obstructive Disorder of the bowels (Short Gut), Katie was placed in foster care at the age of four. Due to the complexity of her care, along with very bad behavior and lack of training for the foster parents, she was moved four times to different families within six months.
On April 6, 2004 we were the fifth family to bring Katie home. We were told that the placement was for ‘end of life care’ because Katie was too ill and unstable to tolerate the transplant that was necessary for her to survive. We agreed with the staff, that if Katie was going to die, she should not die in the hospital, all alone.
For the first two months, Katie was very angry and violent. After all, she felt she had been discarded like garbage so many times that she felt like garbage. So why not act like garbage? She did everything possible to try to get us to give up and send her back to the hospital. Unwavering, I would hold her calmly through each tantrum and outburst (about six a day). I would chant to her over and over, “Trust me, Katie. We will get through this together. I am not going to give up on you.”
Finally, during one of her worst tantrums that lasted almost an hour, she fell exhausted into my arms, and for the first time ‘let’ me hold her. Slowly, she wrapped her arms around me and we just sat on the floor holding each other for another hour. The next day, she unexpectedly gave me another hug. She pulled away to look at me closely and said, “You know, when two people hug, their hearts are talking to each other.”
I then asked, “And what is my heart saying to yours?”
Katie smiled and answered, “I love you.”
What a breakthrough! It took almost six months of being by her side constantly, 24/7, to get Katie’s behavior under control enough to be able to spend extended times out in public, like going to a restaurant. During this time Katie began to trust me more and more. With each passing day she was happier and more cooperative with her care.
One day when Katie wasn’t feeling well, she asked what it would take to make her better. I explained that her ‘tummy’ had lots of problems and the only way to fix it was to get a new one. Puzzled, Katie asked, “Well, where do we go to buy a new one?” With a smile I told her that we would need to go see a doctor and find out, but first we would need to work very hard to get her stronger and healthier. After more description of what this would entail, Katie asked if I would help her. With one more hug and a pinky promise, we began our hard work.
After about nine months of that ‘hard work,’ Katie was doing so well, I decided to call her GI specialist and request an appointment. The doctor was very surprised at how healthy and stable Katie was and granted our request for a transplant evaluation.
I took Katie to Miami on January 3, 2005 to meet with the transplant surgeons at Jackson Memorial Hospital/ Holtz Children Center. We were told that Katie would be considered for a transplant as long as Georgia’s foster care administration agreed to leave Katie in my care during the transplant and for the two subsequent years of recovery. It was arranged and Katie was placed on the transplant list Jan 11th.
After only 18 days, we received ‘The Call.’ On Friday, Jan 29th at 3 a.m., Mercy Flight volunteer pilot Richard Smith and his wife flew Katie and me to Miami for the transplant. At 1:30 p.m., Katie received five new organs: stomach, small intestine, colon, spleen and pancreas. Fourteen days later, Katie was doing so well, she was ready for discharge to the on-site rehab facility known as the ‘Transplant House’ (a floor of an adjacent office building that had been converted into hotel rooms).
Unfortunately however, the day before we were to leave the hospital, something went terribly wrong. The morning of Feb 14th, Katie became very ill and was rushed back to surgery. Mysteriously, all five transplanted organs had lost blood supply and were lost. The transplant surgeon informed me that there was nothing more he could do. He promised to try and keep her alive for 24 hours so that my family could get there to say good-bye.
In disbelief, I asked if there was anything that could be done. He said it would take ‘a miracle’ to save her. I asked, "What kind of miracle?" The doctor replied, "Another transplant in the next 24 hours, and that is just not going to happen."
I explained that I believed in miracles and asked for his cooperation in placing Katie back on the transplant list. He agreed, and Katie was posted at 11 p.m. February 14th. The next morning at 5 a.m., just six hours later, we received word that not only had another donor been found, but that it was a perfect tissue match! We had a miracle. Katie had another chance.
Surviving to Thrive
With unwavering faith and determination, Katie worked hard during her recovery to heal and regain her strength. We grew very close during this time. The day came when we learned that Katie was being placed up for adoption. As a family, we decided that we just could not let her go. In December of 2006, she became a permanent blessing in our family.
February 15, 2010, we celebrated Katie’s fifth post-transplant anniversary – Praise God! Katie, now 12-years-old, is currently one of only two children to survive, two (back-to-back) five organ transplants.
Her future is bright. The doctors say they expect her to grow up, go to college, get married and have kids. She says she wants to be a veterinarian and take care of sick animals some day. But then, with a smile, she will also tell you that she wants to run the Dream House too, so she can help other kids find what she has. As her mother, I have no doubt that she will accomplish whatever she sets her mind to.
Providing Medically Fragile Children Something More
There are many organizations that provide needy children with toys, vacations or a chance to meet a celebrity. What many children like Katie really wish for, however, is a place to call home, a family to love them and the chance for a future.
As our medical technology improves, we save the lives of more children with increasingly complex care needs. Too many of these children are being abandoned because their families find themselves unprepared, unable, or in some cases, unwilling to assume responsibility for their children. Too many families, trying to care for these children at home, break apart from the emotional, physical and financial pressures of ‘going it alone.’
I believe that if we, as a society (as the consenting parents, relatives, neighbors, healthcare providers, attorneys, and business owners responsible for our children), agree to do ‘everything possible’ to save a child, we have a moral, ethical and social responsibility as to the kind of life we are saving that child for. Our health care system is already facing overwhelming challenges. We cannot afford to continue to save these lives through expensive, heroic efforts only to place these human beings, our children (whom many of us refer to as ‘our future’) in expensive, clinical institutional settings and then walk away, leaving them with no purpose and no hope.
Offering Solutions that Change the Status Quo
I established the Dream House for Medically Fragile Children, Inc. in 2001 as a private-sector, non-profit solution to address this widespread health and human service issue. Dream House is a clear, advocating voice for these children. Leading the charge, even in a volatile economic climate, the Dream House Board of Directors and Staff work tirelessly to cut through bureaucratic red tape and inspire policy change; efforts that take time to yield results.
Although slow in coming, the results offer efficient and effective solutions that support positive outcomes for medically complex children and their families. Dream House has proven over the past nine years that if allowed to live at home, instead of in hospitals or adult nursing facilities, quality of life improves for these children and, as a result, they are healthier, need less health care, families stay together and the state of Georgia, its tax payers and health care institutions benefit from a more efficient and effective way to care for them.
Many do not realize that for one-third the cost of longer hospital stays, Dream House can provide the same professional care for the child, while at the same time: 1) Assist with the recruitment of relative, foster or adoptive families; 2) Prepare caregivers through education and skills-training; 3) Prepare the home environment through modifications and equipment installation, and 4) Engage community support resources and volunteers.
Because it is a visible reminder, there is a misconception that the first Family for Keeps® Transition Care Home in Lilburn, Georgia is the actual non-profit organization, Dream House. After all, this incredible 8,400 s.f. fully retro-fitted and handicap accessible home helped pilot our program; a program which has since demonstrated 100 percent successful outcomes for the patent-pending Dream House Family for Keeps® Transition Model of Care. However, this home is only a part of the full spectrum of programs and services Dream House offers to empower families and communities to provide children with the home, family and future they all need for quality of life. Click Here to learn more about what we do!
Without any state or federal funding, the Dream House organization exists today because of the committed, unwavering financial and volunteer support from hundreds of individuals, businesses and private foundations. Having served nearly 1,000 children in 46 Georgia counties and nine other states, we are giving children with special health care needs, a better quality of life and hope for the future. For this, I am eternally grateful.
Living The Dream
My Dream is for every single child’s circumstance to have a happy ending, just like Katie. Changing the status quo is an uphill battle and Dream House has been blessed with the support of a mighty army to reinforce our efforts. Thank you from the bottom of my heart and soul if you have been on the front line with us, supporting Dream House with your time, talents and resources. We need more foot soldiers just like you – more resources, and broader awareness for the innovative programs and services that are improving quality of life for our children.
If you want to learn more about Dream House and the many ways we need help, please call 770-717-7410 or contact us now.
We have been asked many times, ‘why do this?’ My older daughter Anna answered this best when she responded to this question from a news reporter, “We have such a good family. We want to share it with others so they can experience the same love and belonging that we do.” Silly me – what made me think that I could have done this without them? While it has been a tough journey, the benefit and reward has far out-weighed the cost.
As a parent, I have always believed that the greatest gift I can give to my children is the ability to recognize their own God-given gifts and use them to make His world a better place. I also know that the best way to teach this is by being an example. My hope now is, that as my children begin their journey as adults on their own, they will hold fast to their dreams and make their own little corner of His world a much brighter place.
On behalf of my family, I want to thank all of you who have done so much to help make my dreams come true. Many blessings….. Laura.
Return to the Dream House Story: Beginnings, Ugly Reality, Searching for Answers, Dream Pursuit.
