Bella’s story is a profoundly sorrowful yet uplifting one. Born with Trisomy 18, she defied all the odds and achieved her fourth birthday. Amidst a heated presidential campaign, Rick Santorum abandoned it all to stand by his daughter Bella when she was hospitalized for pneumonia. We know that pneumonia has a grim prognosis for children suffering from Trisomy 18; we all watched and hoped that Bella would overcome it.
It was an experience that left a lasting impact on us, notably when we observed the sheer volume of love and devotion Sarah Palin had for her daughter. It was something all parents and guardians of children with special needs could readily empathize with; a common understanding of the bliss, difficulties, trepidation, and blessings associated with raising these wonderful kids whom we perceive as perfect in our imperfect world.
In that memorable 2008, my spouse and I were presented with the opportunity to meet families and caretakers in a similar situation as Sarah Palin’s. We met with parents like Sarah and their precious children, & we immediately formed a strong connection built upon our mutual understanding of the special place they held – juggling work and family life while caring for their children in an honest effort to give them the best shot at life.
extra chromosome
It is not Sarah Alone. I also initially feared the unknown when my Doctor informed me that my unborn baby had an extra chromosome. It was a shock that prevented me from discussing my pregnancy for many months. My only option was to turn to God for help, preparing my heart for what was ahead. Through meditation and prayer, my worry was replaced with a feeling of comfort and joy that I could have never imagined. Parenting didn’t become easier, but it was manageable.
Raising a child with special needs is not easy, and I still have moments of fear about Trig’s future as he faces health and social challenges. However, my little boy brings so much delight despite the increased difficulty. I can honestly say that the joy outweighs any hardship or tension associated with having a “different” child.
How is Trig Doing?
Nowadays, at the age of four, each morning, Trig awakens and, with arms raised in triumph, rubs away the sleep from his eyes. He surveys his surroundings with delight, expressing his enthusiasm through thunderous applause and hearty laughter. As if to ask Creation what it has in store for him today, he claps joyfully at the start of each new day.
My family knows that Trig will face hardships few of us are ever likely to experience, such as the cruelty directed at those who do not meet society’s standards of “perfection.” Nevertheless, this anguish is more than offset when someone grins at our son – nothing can make me feel prouder.
Unconditional Love
As I wrote in a Thanksgiving article, I have observed this to occur more often than not in airports. For example, travelers who pass by him may do a double-take, probably due to the curious expression on his face; or it could be that my son has momentarily executed an uncontrolled motion which took the passerby aback. Perhaps, as an innocent and naive child once proclaimed when she first encountered Trig, they think, “He’s weird.”
But when that traveler pauses to look again and grins and perhaps compliments me on what a handsome boy I have in my son – it fills me with immense pride. I am immensely grateful for their kind hearts – they embody the true spirit of our nation and display the real hope we need in life.
