Kelly Collins

“Forward, Together, Forward”, my alma mater, Northern Illinois University’s rally call in the wake of the 2008 school shooting tragedy on campus. This rally call would strike a cord with me as a way to stay strong many more times in my life.

As a kid, I grew up on the Southside of Chicago as part of an Irish/German-Polish, Blue-Collar family. Our neighborhood identification came through which parish you belonged to. Rows upon rows of brick raised ranches created a tight-knit community where Summer Block parties or any summer day for that matter, meant everyone in the neighborhood was outside. When I was 10 years old, I noticed a new family on the block. A girl my age with three younger brothers! It took little to no time at all to develop a close bond with my new friends! My friend and I, along with her two brothers, would play outside and inside for hours as kids. Eventually, we even got a Nintendo System that may have sidetracked us a bit!

Two of my friend’s younger brothers and an older cousin of mine have special needs. My cousin sustained birth injuries in which he is cognitively impaired and deals with a barrage of mental health issues. Growing up, I can remember from a young age that my cousin was “different” but I sure as well loved the non-stop hide-and-seek sessions at family parties! He is a part of our family and we embraced the good, bad and ugly. My friend’s brothers are both visually impaired and one suffered a brain infection as a child, which resulted in cognitive delay. We we’re together quite a bit in those early years of life, and little did I know what an impact it would have on me later in life.

I always knew I wanted to be an educator, but for a while, I wasn’t sure which area suited me the best. I was able to take a Disabilities 101 type course at NIU as an undergrad and was immediately drawn in. It made sense to me and I was intrigued by all I could learn, and loved the idea of making an impact on a wide variety of learners. In 2002, I graduated with my Bachelors of Science in Education.

In 2003, I was in my second year of teaching as a Special Education Teacher. I noticed a “shy guy” computer tech that caught my 20-something eye. After several weeks of Friday Night Volleyball with co-workers, I decided to ask said “shy-guy” out for date. Three years later, we said, “I do” under an 81-degree day, August 5th 2006, at Starved Rock State Park in Utica, IL.

My husband and I were 26 when we were married and decided to wait to have children. A year before we were married, I was hired as a Special Education Teacher at Lemont Township High School. I am proud to say LHS has been my home ever since July 2005! In 2007, I graduated from Governor’s State University with a Master’s Degree in Educational Administration, while my husband took a leadership role as Director of Technology at his school district.

Shortly after Thanksgiving 2009, we found out I was pregnant with our first child! We found out we were having a girl and I was over the moon! On August 21st, 2010, Jade Claire was born and we were smitten! After a few months, I needed to return to work and felt the world coming down on my shoulders. I was later diagnosed with Post-Partum Depression. I was in therapy, prescribed medication and took up running to help me move forward and feel like myself again.

From the start, our Adele threw us for a loop. I found out I was pregnant shortly before Jade’s 1st Birthday and the start of a new school year. We always knew we wanted a second child, but we planned to wait another 1-2 years. My pregnancy with Adele was much easier than Jade’s. I was more active and experienced fewer pregnancy side effects. Nothing seemed out of the ordinary with one exception; I was at a concert in Chicago weeks before Adele was born and it was loud as loud could be. I kept waiting to feel movement in response to the music, but never felt any. This being my second pregnancy, I noted this oddity but chalked it up to nothing.

We picked April 27th 2012 as my scheduled C-section date based on my favorite doctor’s availability. Little did we know, it would be the last day our lives would be at all predictable. Adele was born at 2:13 P.M. with no complications and one glowing family! Facebook pictures and announcements were posted.

In Illinois and many other states, newborn hearing screenings are mandatory. We got word a day after Adele was born that she failed the newborn hearing screening in her right ear. “Not to worry” said the nurse, “it’s common for C-section babies to have gunk in their ears, and we’ll re-test her before she leaves”. A few days later, she was tested and failed again. Our pediatrician reassured us that everything would be fine, but we needed to make an appointment with the audiologist to get her re-tested in a few weeks. Time went by and I had little thought of the upcoming appointment since I was used to bumps in the road from experience with our older daughter. The day of the appointment came and she failed in both ears this time. This would be the first of many times my heart fell to the floor. The audiologist informed us that we needed to make an appointment with an ENT. 2 weeks later, we were back at what we affectionately called, “The Bad News Office”. The ENT introduced herself and looked over Adele. Much of this appointment is a blur to me. Our ENT told me that Adele had extremely narrow ear canals and some unique facial features and that we should consider getting a chromosomal analysis done on her. Looking back, I realized this would be my first taste with being a parent of a child with special needs.

We met with our pediatrician a few days later and she immediately drew up blood-draw orders to get the ball rolling. “How long will it take to get the results back?”, I asked. “Two weeks”, said our pediatrician. The two weeks between when her blood was drawn and we received word of the results were the worst two weeks of our lives.

On July 2nd, 2012 at 1:35 P.M., I happened to be with a good friend and her sons at a play date when our pediatrician called saying that she had spent the entire morning researching what Adele had been diagnosed with, “18q deletion syndrome”. She informed us that she, nor any of her colleagues, had ever come across a child with this syndrome. “It’s 1 in 50,000 and there are wide implications”. We had an answer.

Then came the barrage of specialist appointments. We found out the following by the time Adele was 3.5 months old: She has an ASD (Atrial Septal Defect), or hole in her heart, mild conductive hearing loss in her left ear and moderate sensorineural/conductive hearing loss in her right ear. Because of the 18q- diagnosis, Adele would automatically qualify for Early Intervention Services.

I rallied up the help of my boss to connect me with Early Intervention Services in our area. I was immediately connected to Child and Family Connections and had the first of a million conversations with Adele’s case manager.

Our first IFSP, meeting was scheduled and my husband and I were a nervous wreck. I felt really vulnerable being at the “other end of the table”. Adele’s case manager arrived first to have my husband and I sign the stacks of papers that I can only equate to those at a house closing! An hour later, the therapists trickled in and our meeting began. I cried at least three times in that meeting. After the meeting, I realized that we had just assembled Adele’s Army.

Today, Adele is nearing her 3rd birthday. I call her my “old soul” because she seems wise beyond her years. Our family is moving “Forward, Together, Forward” in part due to The Chromosome 18 Registry. I remember being directed to the website and looking at the 18q- page for the first time. At that moment, I felt some relief knowing that every test, apt, etc. we were experiencing was part of Adele’s path. I must have been on the 18q- page 100 plus times and listened to the genetics podcasts 50 times, so I knew exactly what to tell people. The 2013 Conference was our first and it was a game changer! It was the first time I felt like we could breathe as a family. We met so many amazing families that I immediately bonded with! One of the many things I was struck by was how much the Registry was in need of funding to continue with its mission. I was inspired by Dr. Cody’s grassroots efforts come to such a beautiful, life-saving fruition. It was in Savannah that I became motivated to start “doing”.

Since that time, I have been involved with fundraising for Phantom Tea and chaired The Chicago Rock ‘n Roll Half Marathon and 5k fundraising efforts on behalf of the Registry. I am also looking into hosting a benefit in honor of Adele, with fundraising proceeds going to the Registry. I have noted so many creative individual fundraising efforts from Registry members! As Director of Individual Fundraising, my goal is to help Registry members hold individual fundraisers with ease by providing ideas, resources and technology to help members be successful! I am very much looking forward to working with and getting to know our Registry members and am honored to work with an inspirational organization!

Kelly