Family Advocacy Day First Person -- Kara's Story
By: Linda Waddell-Salvetti, Kara's mom
It is truly a pleasure for us to be Kara’s parents. It has been a long journey that has brought us to this place of peace and understanding. Together with the support of our team of doctors and a caring and wonderful special needs school our lives are almost as routine as any other family.
Kara was delivered by emergency C-section at nine months after it was discovered her fetal heart had dropped significantly. Her entry into the world was traumatic to say the least. The first words the doctor spoke to us were “Your daughter has lost a significant amount of blood and we are unsure if she will survive through the night.” Two thoughts came to our minds at that moment, one was we had a baby girl and then the reality of the second, she is dying. It’s a powerful memory one we don’t like to revisit often.
The days turned into weeks and Kara managed to hang on. The breathing tube was removed and slowly she started to show signs of small progress. With each new day brought a new challenge. The seizures were controlled by medication and her kidney function was restored. Despite this progress, Kara was not sustaining weight and unable to keep down her feedings, so surgery was ordered for fundoplication and a gastrostomy tube was inserted. Again, Kara showed her strength as she came through the surgery. Discussions began of discharging her home. Tom and I learned everything to take care of our fragile baby and at age 2-months Kara slept in her crib for the very first time.
Deeply worried for the future of our daughter we were directed to have Kara evaluated by Children’s Specialized Hospital. This was difficult for Tom as he had to return to work. Kara’s birth had absorbed all of his time off and he needed to make sure his job was secure. As for me, I did not return to work as originally planned. So when we left each other that morning going separate directions we knew it was what we had to do. No amount of crying or anger would change this situation, we had to press forward like it or not.
I pulled into the parking lot and wiped away my tears and walked into this beautiful building that looked more like a house.
Never realizing how much we would come to rely on Children’s Specialized to teach us how to care for our beautiful, medically fragile daughter. When we look back on the years Kara spent in therapies; the many visits to the pediatric group coordinating all of her care; the appointments with specialists; the numerous amount of testing, blood work and equipment needed to care for our daughter; the one question we ask ourselves is where would we be without Children’s Specialized Hospital? Years of teamwork, teaching, learning, adapting, accepting helped Tom and I to prepare Kara to be able to attend school, a beautiful environment appropriate for our daughter. And during this time we also gave birth to Kara’s sister Allison, the best band aid parents could wish for after experiencing such tragedy when Kara was born and the best therapy Kara could have. Allison conquered all those developmental milestones we had hoped Kara could do. Life slowly started to fall into place for our family; we had a routine, wonderful support and confidence. For Tom and me we will always feel sad when we remember the beginning of Kara’s story, but her message is so much greater than that. She has taught us how to measure what is truly valuable in life and how sometimes you have to live day to day. Because of Kara we know so many people who have become our lifelong friends. We also realize we are much stronger than we ever thought we were and she is even stronger. Life is good.
You don’t know me but I just read the letter your mom posted. It moved me to tears. Not because it made me sad, but because of all she has done to help you. Your parents are so strong and loving and I had to take a deep breath after reading it. I am a mom of a boy with special needs. There are days that I found it difficult to get through. But when I read your story, it helped put into perspective that there are families living with much greater challenges. She also helped me realize that “day to day” we just seem to get through it, with some prayers, friends, and especially the help of doctors, nurses, therapists, teachers, and others who truly care about helping our kids get better. Parents just can’t do it alone. Throughout my life, my I believed that I should always help others. But I have learned in life that it’s alright for parents to get the help we need from others. It truly is the only way to get through life – using our time and talents to help each other. Kara, your family loves you very much and they are helping other families like mine realize that it is O.K. to rely on the knowledge and strength of other people. And by doing that, they can do what they’re best at – being your mom, dad, and sister. Continue to be strong and understand that your family is making a difference in the lives of so many children.