Contributor Bio: Amanda

We’re in this Together
The Bond of a Family through Adversity

It’s a typical morning and mom, Amanda, is cooking breakfast when Maddie rolls into the room with her favorite Disney toy.  Curly pony tails, rosy cheeks and a smile that brightens the room like a ray of summer sunshine.  Dad, David, is busy gathering his things for his work.  Amanda gives him a hug and he leans down to kiss Maddie.  David is off to his job as a pharmacist and Amanda, on leave from her job as a pharmacist, stays behind to care for her sweet daughter.

Born with Spina Bifida, Maddie requires round-the-clock catheterization for her bladder.  Maddie has a neurogenic bladder, a frequent complication of Spina Bifida in which the nerves that carry messages from the bladder to the brain do not work properly.  Keeping Maddie healthy is a huge commitment.  Amanda catheterizes Maddie every four hours.  Initially it was a difficult adjustment, but one that has gotten better with time.

Mom, Amanda, is a strong, intelligent, independent woman.  She is fully committed to raising Maddie to be just as independent as she is.  Maddie is tenacious and curious.  They both are fighters!  Young Maddie fights everyday for her independence and for strength.  Amanda has her own fight.  She is battling breast cancer.  Together, they are on a personal crusade to be victorious.

Maddie is radiant, she not only smiles but she emanates affection from her soul.  When you are with Maddie you can’t help but be in a pleasant mood.  After all the concern about her diagnosis, when Amanda and David hear her giggles, it’s like a glimpse of heaven.

Amanda recalls when Maddie was born there was little time to explain Spina Bifida and all it included.  There was no time to cry.  There was no time to do anything but make sure Maddie was taken care of.  Now they have found their rhythm.  David, Amanda, and Maddie have developed their personal family narrative and it’s a beautiful one.  It’s not the Spina Bifida nor the cancer that defines this family.  Their commitment to one another is the cohesive element that holds this family together.  Though most days are not easy, they are worth every minute.

They share the idea that adversity is something much bigger than themselves.  Amanda explains, “When I was first told at 18 weeks pregnant, that my child would be born with Spina Bifida, I wanted to find out all the information I could about the condition.”  Despite her desire to search the web, her husband intervened and would not allow Amanda to stress with information overload those first few days.  Then when the initial period of shock began to subside, Amanda goes on to explain, “At that time, I desperately wanted to find a source of hope.  I wanted to see the face of a child with Spina Bifida.”  They found comfort in knowing that this was their child, the child that they had been given the honor of raising.  They never doubted that regardless of any diagnosis, they would love this child unconditionally.

Maddie will grow and as she grows older her parents will teach her to be self-sufficient.  She will be taught the importance of clean hands, that she can have her own catheter case and go to slumber parties.  Self-sufficiency is part of building her self-esteem.  Maddie will learn to dress and bath her self.  Just like any other child does when the time comes.  But for now Maddie is just like any four year old and her interest is in the latest Disney princess and her next trip to the toy store.  

Without doubt, Maddie will touch the lives of many.  We are enthusiastic about watching Maddie grow and to follow her in the Bard Care Community.  Keep checking back!!