When Mary Pat was born with Pierre Robin Sequence we didn’t know if her physical deformities were the extent of her problems, or if she had other potentially associated disabilities as well.
In truth, we didn’t know if she would ever walk, or talk, or eat on her own, or even survive. It was harrowing for a few weeks, scary for a few months, and then for years we fell into a routine of care that was full of unknowns. She had multiple appointments each month, and therapists who came to the house two to three times per week.
A good friend of mine has six wonderful children. Her youngest was born with Down Syndrome about a year before Mary Pat. Quite a few times at a moment’s notice, she drove half an hour to help me replace Mary Pat’s tiny nasogastric tube. In tears, I felt as though I’d entered a new world — a new “club” — of parents with special needs children. Early on, though, my friend pointed out that the way she saw it, each one of her children had “special” needs. Each had needs quite unique to them. I was blessed by her wisdom.
I have referred to Mary Pat as our “special needs child” but perhaps I should rephrase this to “our child with special needs.” Why is it that I need to distinguish her at all from the others? Sometimes it is to emphasize her extra-ordinary needs, but I suppose it is often for ease of description. We have six daughters and four sons. The oldest four girls are sometimes referred to as our “oldest, second-oldest, third-oldest and fourth-oldest.”
Our sons are described similarly, and then Mary Pat as our daughter with “special needs” and Margaret as our “youngest.” Again, they each have their special, unique needs, and we love them dearly. Energy and time can be spread thin in large families, but the love multiplies exponentially.
If it is true that every child has their unique and special needs, then that oft-heard sentiment that only “certain types of parents” do well with such children is unfounded. We grow into what we are given or challenged with. I understand fear and even panic when learning that a child in the womb has a certain diagnosis which will significantly impact the course or length of their life, and which will significantly impact the family. But the truth remains that every single person I have known who raised such children, even those who lost them early, professes immense blessings, and gratitude for the effects of their children on their lives.
Just as profound are the effects of these children on others. Mary Pat wheeled herself around her elementary school when she became ambulatory with a walking device. She would visit the other classrooms and became known to all the other children. They learned about her, and her differences were demystified. She was welcomed and loved.
Mary Pat received handwritten cards from schoolmates throughout the years. One third grader told her that she wanted to be like her–happy all the time. Another said over the loudspeaker during morning announcements, that he was inspired by Mary Pat to go to college so that one day he could work with children like her.
Each of her caretakers have been touched by her life, and love her dearly.
Yes, it is true that more time, energy and resources are often needed for children like Mary Pat. But the world is a better place because of her, and those like her. They are endowed with grace that holds the potential to bring out the very best in us. They teach us about what is important in life. They evoke compassion, and spark an unstoppable chain reaction of love.
Suzy Cornflakes 