You gaze at a photograph of the beautiful Kirsten, your cousin’s tow-headed daughter. She smiles with confidence, prepared to accept her high school diploma and march into the hallowed halls of academia. She banters about scholarships and declared majors, and you marvel that the child you used to carry in a laundry basket prepares for such adult undertakings. Misty-eyed, you congratulate her, wish her well, and know in your heart she will experience success.
Kirsten is four months older than your Sarah.
When you caressed your expanding belly, whispering hopes for the future to your growing baby, your forming Sarah, you imagined such a glittering future. Your child would have advantages you lacked. She would explore the world, make wise choices, and feel fulfilled. The world would not trample her dreams. She would rise like cream to the top of every experience.
When the diagnosis labeled your beautiful little girl, you thrust out your chin with determined purpose. You ignored the nay-sayers. “She won’t walk.” She does with the assistance of bracing and crutches. “She may never speak intelligibly.” She experiences mild dysarthria, but her speech is intelligible and usually kind. “She won’t read.” Her favorite past times include watching her favorite shows, playing with her service dog Latte, and – oh yes – reading. (though her comprehension limits the difficulty of her novel selections.) “She’ll never master mathematics or reasoning.” Okay, they got us there.
As you think of Kirsten’s future, you plunk down into a chair, realizing the truth which you manage to push aside with busy daily schedules. Your Sarah will not graduate for another four years. Even then, she won’t go on to college. She may hold a part-time job, but she’ll never earn her own way in this world. She longs to drive a car, but her impairments will not allow her to earn a license.
Even such tasks as opening a door or climbing a set of stairs may prove daunting, if not insurmountable. She can’t unlock the door with a key. She requires prompts and reminders for self-help and emotional stability. You dose her medicine, prepare her food, and help her don her bracing and shoes. You’ve recently learned she can’t sport a scarf to protect her from the cold, for fear she’ll choke herself.
She has no concept of money.
She loves most everyone she meets, even when misplaced affection brings heartache. She trusts as the innocent she is, her self-preservation instinct lacking. She loves Disney and Harry Potter, believes in magic and wishes.
She is forever a child.
You had prayed your little ones wouldn’t grow up too fast, that you could savor the time with them. There is a video circulating the internet featuring a 5 year old big sister crying her heart out because she “doesn’t want her baby brother to grow up.” You sympathize with this child. You never imagined you’d birth an eternal youngster, one who may never live independent of you. Now that you look emotionally ‘eternal youth’ in Sarah’s big, brown eyes, you realize how erroneous your previous thinking. Growing is a part of living.
You are grateful God allowed you to be a mother, thankful you have as one of your children this special, complicated, beautiful young woman. Sarah inspires you to be a better person, a patient, caring believer in magic and lover of everyone. She forces you to slow your pace and to never take for granted any accomplishment.
You measure her successes differently and celebrate what others overlook. And you pray to be strong enough to be an able mother and advocate for her and her siblings.
You are proud of Kirsten. She possesses smarts, strength, and backing. You are gratified that she will succeed.
You are proud of your Sarah, too. Her success may be determined differently, but it is success.
To read more of Kerry’s letters, click here!