The Gift of Candi Foundation seeks to provide financial assistance subsequent to organ donation for end-of-life expenses, such as, but not limited to burial expenses, transportation for burial, and other immediate needs of the family. The Gift of Candi is also intent on creating and maintaining a national data base where donor families and recipients may be able to connect, as well as provide memorial tributes to honor and remember each donor in recognition and gratitude for their Gift of Life.
The first page of Candi's baby album has the verse:
Like a single drop of rain
That on still waters fall
My life and love will ripples make
And touch the lives of all.
So read this precious story
As step by step I grow
I am a blessing and a gift
As each page here will show.
Full of love for this new little daughter and dreaming of pink dresses, proms and weddings, I loved this poem. I had no idea that our time with Candice would be so short and that her life, her story, would impact millions around the county. In fact, with the difficult pregnancy and dangerous birth we had already endured, I thought the worst was over. It had to be, it was a miracle she was even here! I feel so very thankful for the gift of this tiny daughter.
But that wasn't all, there was more. Something was wrong. Her pediatrician, Dr. Constance Glasgow and I knew it, but we could not find it. Six months and many, many trips to various specialists, we finally have a diagnosis, Candi has HYDROCEPHALUS. This terrifying news is followed immediately by brain surgery, then another, and another. My tiny baby endured it all with a sweetness that stole the hearts of everyone who cared for her. I am reminded of the poem in the beginning of her baby book, “My life and love will ripples make and touch the lives of all.” Wow, little one, look at the lives you have touched!
Surely, now the worst was over now! We have a diagnosis and a cure - another miracle! Now I can just enjoy my little daughter. Joy and laughter fill our home. We are a happy family with two precious daughters and I feel incredibly blessed and grateful.
Oh how the ripples are spreading… I am invited to become part of a network of mothers called Parent/Friend. As a volunteer member of this organization, I took phone calls from families struggling with the news that their child has been diagnosed with hydrocephalus. I help them process this terrifying news. I listen to their stories, fears and questions, and share with them what it was like for our family, helping to comfort others with our story. I am amazed!
Little Candice – look what a difference you are making in your Mommy’s life and in the lives of so many others. You are “A blessing and a gift to all who know you.”
But the ripple would spread farther that I could ever imagine. Candice was destined for more, much more…
Candi’s Gift
To live in the hearts we leave behind is not to die.
Twenty-six years ago I was given the incredible gift of a daughter, Candice Faye. Everyone loved Candi, she was joy and laughter. It wasn’t until she died, however, that I understood the extent of her love and kindness, and the gift that was her life. The priceless gift she was and is to all who knew her.
Candi was born with hydrocephalus, a condition that causes intense pain and swelling due to fluid build-up inside the skull. A shunt, implanted when she was 10 months old, drained excess fluid down the inside of her neck into her abdomen.
Every so often, the shunt would become clogged or infected, and Candi would go into the hospital to get a new tube and a dose of antibiotics. Such was the case in October, 1994. Same old routine, I thought. But Candi did not bounce back like she usually did, and by the time they discovered the problem—a particularly virulent bacteria resistant to standard drugs—it was too late.
Although I had no idea this was to be Candi’s last week of life, I never left her side. Candi had many friends here, her gentle spirit and infectious laughter charmed all who met her. Having spent numerous nights in this unit over the years, Candi had stolen all of their hearts. She never complained during difficult procedures, always a smile and thank you for anyone who entered her room.
One night, a woman in a nearby room was declared brain dead and her family was asked if they wished to donate her organs. My family listened and watched as they cried, She can’t be dead, She’s still breathing! Get another opinion! No! No! No! they screamed.
You see what this family could not understand was that their loved one was not in a coma, but brain dead, all brain function & oxygen to the brain had ceased. In fact, the ventilator that made it look like she was breathing would not keep her body functioning for long.
We watched this family struggling and suffering with the death of their loved one, having no idea that the very next night we would be facing the same agony. When they finally understood their loved was indeed dead, they wanted to donate her organs. Later, in the stillness of the hospital night, I heard the Coordinators say, “They waited too long, it’s too late. We can’t transplant any of her organs.”
Candi and I had not slept in more than 36 hours she had been in such horrific pain. Finally, as Candi began to fall asleep, I whispered, “Good night, I love you. I’ll be right here, I won’t leave you.” In so much pain she couldn’t speak, she smiled weakly and we closed our eyes exhausted. It was midnight.
At 1 AM, I awoke with a start to hear the doctor standing by Candi’s bedside, calling her name and then calling, CODE BLUE. I could hardly breathe as I waited for them to help her. Doctors & nurses arrived from everywhere, white coats flying, doors slamming, as the crash cart appeared. I thought MY heart would stop beating. A nurse drags me from Candi’s side. I refuse to go beyond the door. I promised I would not leave her.
The hospital staff was able to resuscitate her, but somehow I knew these were Candi’s final moments. I turned to the doctor, and thinking of the family earlier in the day that had waited too long, I asked, “If Candi doesn’t get better would it be possible to donate her organs?” Tears sprang to the doctor’s eyes, “I have more tests ordered for the morning,” he stammered, unwilling as all doctors and hospital staff are to surrender their endeavors to save lives.
Now in a coma, I comforted Candi, touching her and telling her, “Candi, Mommy’s here. Everyone is here. Don’t be afraid, You know I won’t leave you.” Tiny tears slipped from the corners of my daughter’s eyes.
Then suddenly, in an unforgetable moment, I felt an unexplainable, overwhelming sense of peace, and I knew my sweet 13 year old daughter was gone. Standing by Candi’s side as I felt her leave us, enveloped in the precious peace of death, I turned to the doctor, and said, “She’s gone isn’t she? Can you call the coordinators now?”
Believe me, the Coordinators that helped us were compassionate, sensitive and kind. They never hurried or rushed us. In gentle tones they answered all our questions. Many people think the process is gruesome, I know I did. However, even after Candi was brain dead, the coordinators talked to her like she was still there. They even kept her stuffed kitty beside her during the surgery to complete her gift of life. My daughter was treated with utmost dignity and respect.
On the day of the funeral we were told that the gift of one of Candi’s kidneys saved the life of a young man who is an artist. The other kidney went to a Daddy with two small children, completely disabled and on dialysis. I learned later that within 6 months he was back working 12 hour shifts and able to play with his children again.
Candi’s liver went to a grandmother who later wrote us, “How can I thank you for the gift of watching my grandchildren grow?” A father of two grown daughters received the gift of her heart. When I met this man 5 years later, I was overwhelmed when he told me that he had prayed for our family everyday. It was so very important to him that we understood he was taking extra good care of the priceless gift of Candi’s heart.
Determined to cherish and remember my daughter, I created a special storybook that celebrated the gift Candi was to us. You see, the worse part of losing someone, is the forgetting. We are the sum of our stories. After completing her storybook, I was surprised by the healing I felt because I didn’t have to struggle to hold on to her anymore. I had written it all down in her keepsake photo storybook. Wanting to help others preserve their special memories and photos, I began holding get-togethers, sharing my story and helping family & friends preserve the gift that is each and every life. I was surprised to realize how powerful sharing our stories can be.
These efforts were preparing me for something I never dreamed capable of, helping others cope with the decision to donate. One day the Center for Donation called and asked if I would be one of the founding members of The MOD Squad - 5 women united by loss—each a survivor of the death of a child. As a “Mother of Donor” volunteer we would share our stories with hospital staff, give interviews to the media, talk to local politicians, anywhere we could, JUST LIKE ALL OF YOU, to spread the message of the incredible healing power to be gained by donating a loved one’s organs, and the new life that can emerge from tragedy.
But the most important role of the MOD Squad—was to support families facing the decision to donate at the time of death. Our role was not to lobby for donation, but to answer questions families often felt uncomfortable asking of others, offering our support, contacting relatives, or whatever the family needed. With the support of a MOD Squad member our organ donation consent rate went from 49% to 91%.
The truth is, losing a child, or any loved one is the very bottom, you can’t get any lower than that. But when organ donation is offered as an option in a caring and compassionate manner, it represents the first step upward.
Sometimes a family chooses no to donation. That’s Okay too. We just want them to have the option. To know they have a choice. No one else’s wishes should come before the families, not ours, not a hospital staffer, not the transplant center. It’s the family that will live with this decision forever, it is theirs to make. From my own experience at the bedside of numerous potential donors, the family members, not knowing what their loved one wanted, find it almost impossible to make a decision.
On the day of Candi’s funeral, when the center called to tell us about the recipients, we were surprised at the comfort we felt at that moment, realizing that in our loss two families received the gift of sight and four families received the gift of life and would not be facing the agony of death at this time. Knowing that lives were saved helped carry us thru that awful day. And now, 13 years later, we still feel comforted at the thought that others are alive because we gave. We have never for a moment regretted our decision. And every donor family I have ever met expresses the same sense of comfort, because we know and understand how very precious the gift of life is.
A Donor Family knows …To live in the hearts we leave behind is not to die.
Wendy S. Vaniglia, Mother of Donor
3322 Casseekey Island Rd, Southporte 104, Jupiter, FL 33477
561-747-7542 H 518-269-0684 C cmcwendyv@aol.com
http://www.mycmsite.com/wendyv
Transplant Foundation Leading Ladies Luncheon 5.16.07
Her soft giggles
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