Haydn Kirkwood Kramer
May 02, 1991 – January 22, 2020
You came into this world on a warm spring day in May. Life was a challenge from the beginning. Unable to breathe on your own, you were resuscitated only to be whisked away to the NICU less than 24 hours old. It was then we were thrust into the unknown, undiagnosed, unforeseen future of disability. Medical professionals had no answers. Terms like multiple congenital anomalies and possible syndrome of unknown etiology became the norm. They described you as having microcephaly with dysmorphic features, but to us you looked more like an adorable baby Yoda, as cute as can be. They classified you as failure to thrive as you had such difficulties with feeding, growing and developing. But thrive you did, in your own way, on your own terms you grew into the most patient soulful human a parent could wish for.
Our world turned into endless appointments with specialists after specialists and hours upon hours of sitting in waiting rooms. Assessments, therapies, hospitalizations and over 30 surgeries performed to help improve the quality of your life. Your first began before you were barely 3 months. You endured it all with bravery of a soldier. At the age of 4, after being hospitalized for 2 weeks with severe undiscovered reflux we finally got a diagnosis- deletion on the long arm of chromosome 2 – 46XY del 2 (q31q32.2). Though there was no prognosis, as it was too rare, it was still a relief to know.
Therapies began before you reached your first birthday. You learned to explore your world by scooting to your destination of choice. Early intervention started with the PEEP program when you were 3. Inclusion had begun. You charmed everyone by your innate ability to capture attention by simply being you. At the age of 5 public school began. Though try as they did, your medical and educational needs were beyond what they could provide. It was then that we learned of the Perkins School for the Blind in Watertown MA. They became our lifeline of support as they welcomed you into their school. You were assigned to the deaf-blind program for significant hearing, visual and intellectual deficits which prevented you from developing speech. At the age of 6 you one day decided to take your first independent steps. Over the next 13 years through the outstanding dedication of doctors, nurses, teachers, therapists, and personal care attendants you thrived. It was there you learned to communicate first with objects then progressing to photos and symbols. As the years went by, you preferred to use your own gestures to get your point across. Frustrated with your Dad one day as he was trying to coax you to eat, you pointed several times to the “NO” symbol but you Dad wasn’t getting it. Finally exasperated you grabbed the “no” symbol and threw it with all your might on the floor to make your point! He got it.
Staff became your second family. They adored you as their own. You were so small; they made a T-shirt that said “please don’t pick me up until after the school day -I am learning to be as independent as I can!” You were nicknamed Haydo Potato for your love of fries. At home we called you the Dorito mosquito as you could never get enough. The greenhouse was one of your favorite hang outs. You always loved the outdoors and water fountains. On cold winter days it was the best of both worlds. Music and videos were other passions. Playing them as loud as you could, devilishly turning up the volume at every chance. Acoustical guitars were the best. Like a rock star you thoroughly enjoyed strumming and smashing them.
When feeling well, you loved to eat. One wouldn’t know it by your size, but you had quite a sophisticated pallet. Above all though, pickles were your all-time favorite. It was a pickle that motivated you to find your way from the cottage at Perkins to the dining room destination. Had it your way, you could consume an entire jar.
Water play and the sound of banging pots and pans kept you entertained for hours. You could never get enough of walks in your stroller. You would grab the hand of a visitor leading them to the door to take you for a walk, regardless of the weather. When it was too inclement car rides were preferred. Your laugh was infectious and precious, for we knew that you were feeling well.
Upon graduation from Perkins at the age of 21, you began your adult life at Waban Residential program in Sanford ME. It wasn’t an easy transition for us as our world and support systems suddenly changed. You charmed your way into the hearts of those that cared. You began equine therapy at Carlisle Academy and learned to love riding horses. Grooming them however was not a particular favorite as you so vehemently expressed on more the than one occasion by refusing to brush your horse. Your balance and gait improved so much, you gained the confidence to get up out of a chair independently and walk around (with assistance close by of course.)
Your life has been an education for us all and continues to be. As you grew and overcame illnesses and obstacles, we navigated through medical jargon, numerous diagnoses, insurance claims, IEP’s and person centered plans. You taught us to endure when everything looks bleak. A bad day for us was nothing compared to what you had to bear. You kept on going through painful surgical procedures and recoveries; willing swallowed endless amounts of medications that would make most of us gag- sometimes even helping by grabbing the syringe by yourself. You taught us patience and dignity, self-control and unconditional acceptance. Your sudden death taught us the fragility of life is never to be taken for granted. Many would think that your passing is a relief from the 24/7 care and your reliance on others to aid you in all your daily living needs. It is far from it. Grief never ends when love is there. Your legacy lives on in each and every day. Your spirit is alive in the bright sunshine, the sparkling on the water, the snowflakes that fall from the sky, and the wind that blows from afar. Your wisdom was seen in the reflection of your pure blue eyes. On behalf, of all special needs, we honor your life and the gifts you have given. We miss you more every day.
With Unbounding Love,
Mom and Dad