My medically complex warrior
Most of you would know my eldest daughter Teigan, the front counter girl at the Border Post, but what a lot of people don't know is Teigan was born with a genetic disorder known as 22q11 deletion (De George Syndrome).
My husband and I were young first-time parents and when our little, perfect, bundle of joy was born we were over the moon. But that joy soon turned to utter devastation when we learned Teigan had to have her first heart surgery at six weeks old. It was a band-aid surgery, just enough to get her to 18 months and was a success, but one month later, she went into heart failure and off to hospital again... and so began our life as parents of a child with a genetic disease.
Some days we didn't know if Teigan was going to make it to adulthood, such were her ailments, but time after time she proved the doctors (and us) wrong. I think that any parent who has a child with a disorder knows that children seem to have an inept ability to just fight. Kids don't understand what it is to lay down and feel sorry for yourself, they have far more important things to do. Teigan was the ultimate battler.
She was in and out of specialists and hospitals with so many different problems for the first fourteen years of her life and as parents, we were beginning to think she was the unluckiest little girl around. All that changed when a wonderful paediatrician put two and two together and had Teigan do a simple blood test. Suddenly the dots joined up and numerous problems turned out to be one genetic problem.
It all made sense and in the long run, we were able to know what to look out for and how to overcome or help with so many of her illnesses To meet her, you would never know Teigan has overcome so many difficulties. She faces every day with a smile and never wants to be treated differently. In her eyes her health problems have never been something to dwell on and she wears her many scars as a badge of honour and strength.
My husband often used to tell me that unwell children are given to the strongest parents to protect them. This is so true, but I think if you take it one step further, it is these special children that help us find our strength.
I read a quote from a parent who is facing her own battle with a child with a genetic disease: "I have slept in a hospital chair, skipped meals, cried from fear and joy. I have become an expert on my child's condition. I am a strong advocate and had to make life-changing decisions. I am the parent of a medically complex warrior”.