When I first read about nominations for this years Memorial Princess sessions, I thought “Wow, I would love for our family to be able to have a session with Heather.” You met Kaelin two years ago and gave us not only beautiful portraits of her, but also an experience of a lifetime. Every time I walk by her beautiful portraits I think back to that afternoon and experiencing Kaelin having fun and smiling for you. Even though I wanted to nominate us, I didn’t because I didn’t want to be greedy when there are so many other deserving children out there. When I saw on Facebook this morning that you are still seeking nominations, I decided that was the nudge I needed to tell you about the rest of my family and nominate us for this year’s Memorial Princess Session.
Keith and I have been married for 22 years and we have three beautiful children. When our first son was born, we were ecstatic to be new parents. My pregnancy had been uneventful, but Aaron came into the world 3 weeks early and with some surprises. On the morning we were scheduled to leave the hospital, his pediatrician came into my hospital room and told us “He may have a chromosomal abnormality. If he does, its Down Syndrome. We’ll talk about it at your appointment next week.” Then he promptly left the room without giving us a chance to ask questions. We were stunned. No one had mentioned anything might be wrong. All we knew was that we had this perfect, tiny baby boy who we already loved beyond belief.
At the appointment that next week the pediatrician sent me home with a book about Down Syndrome with a copywrite date of 1972. The book instructed parents to institutionalize their children. My mom hid it from me and told Keith not to let me read it. Of course, I did, and quickly realized how absolutely ludicrous it was to guide parents this way in 1999. This began my journey of becoming a fierce advocate for my son, and eventually for Kaelin as well. Over the next several years, we were told “Aaron will never read…never jump…never have the intellect above a seven-year-old…never be in regular classes in school…never, never, never. I lost count of the times I heard someone tell me he would never accomplish something in life. I simply DID NOT accept this line of thinking. My mantra became “Never say Never!”. I spent every waking hour working with Aaron, loving Aaron, encouraging Aaron, pushing him to be the best he could be. Three weeks after I was told by his physical therapist that he would never jump, guess what he did? He jumped! He was three years old. By the time he was 4, he was doing front flips and his favorite place to go was to gymnastics class. He wrestled on his High School team from 8 th grade through his senior year. The wins were few, but oh were they sweet! Aaron started reading in Kindergarten and was fully included in regular ed classes throughout elementary school. He had extra help in class. He was pulled out to work on things he needed extra attention with, but he learned to read and write, just like all the other kids. He got the nickname “monkey boy” in kindergarten because he could fly across the monkey bars faster than all his classmates. Even though I didn’t listen to all the negativity from the “experts”, I silently had my own fears for him. The biggest fear I had was that he wouldn’t be able to share love like Keith and I had for each other. As Aaron grew up, I realized that this fear was unfounded. He loves bigger than anyone I’ve ever known. He has so many wonderful friendships, he calls his grandparents every single day, and he’s been in love with his girlfriend since he laid eyes on her 6 years ago. She’s beautiful and fun and also has Down Syndrome. Loving and being loved by others comes easily for Aaron. Seeing him grow into an exceptional young man has been a true blessing. He’s 20 years old now and thinking about his future. He wants to work in landscaping. We know he will excel at whatever he puts his mind to because that’s just how he is.
You already know about Kaelin. She’s also a beautiful soul, but our road to understanding her has not been straight. She has always been a challenge for doctors, teachers and therapists to understand. She’s a bit of a puzzle, which makes raising her a challenge. Kaelin was delayed from birth, but while a simple blood test told us about Aaron having Down Syndrome, that wasn’t the case with Kaelin. When she was two, a speech therapist told us that she just didn’t want to talk when really, he wasn’t having success with her and didn’t know what else to try. When she was 4, she was diagnosed with Childhood Apraxia of Speech. Kaelin has spent thousands of hours in therapy over the years to help her learn to communicate her thoughts with others. Its been a long process. I think you will be pleasantly surprised with just how much she has improved in the last two years if we are chosen again. When Kaelin was 7, she began losing her hearing. It got worse within that first year and she now has moderate-severe sensorineural hearing loss. I’m happy to report that her hearing has remained stable over the last several years. Just before her 8 th birthday, Kaelin was diagnosed with Autism. When she was 4 years old, she was tested for Autism and we were told she was much too social to have it and were dismissed back to our life of searching for answers. For most people, the diagnosis of Autism is a difficult, bitter pill to swallow. For us though, it was a relief. Finally, we had a direction to go, therapies to try, and information that might help us understand how to teach her, discipline her, and even love her the way she needed to be loved.
Daily life hasn’t always been easy with Kaelin. Autism brings with it lots of anxiety and overwhelming emotions that have been hard for her to communicate to us. At age 14, we are still learning together every single day how to give her what she needs to be happy and successful in life. In the last few years, Kaelin has also been diagnosed with Osteoporosis. Her most recent x-rays show that she now has compression fractures in two of her vertebrae and she has developed scoliosis. She will likely need to start infusions to help increase her bone density and keep the damage from worsening. She has had to stop doing some of the things she loves because of the bone issues, but she continues to dance around the house singing at the top of her lungs to all her favorite songs! Early in 2018, Kaelin was diagnosed with Celiac disease, which is an autoimmune disorder where the body attacks itself when the person eats food containing gluten. This started a chain reaction where both of my sons and my husband have been tested and found to also have Celiac. So, our house is now gluten free, which was overwhelming for me at first. It seems like an easy thing to change, but, it’s quite difficult because gluten is in most processed foods. Teenagers no longer able to eat pizza and burgers didn’t go over very well, but I’m so proud of all of my kids in learning what they can safely eat and not letting the difficultly that comes with that limit them when it comes to spending time with friends.
Our middle son, Jacob, just started his freshman year at UGA. While he does not have special needs, other than Celiac disease, he is a special person in his own right. In many ways he has had the role of oldest child, even though he is two years younger than Aaron. Jacob has been an amazing brother to his siblings and a wonderful son to us. He’s our introverted, thoughtful child who loves quietly, steps up whenever he is needed, and has been a rock for our family. I treasure him, as I do his brother and sister.
Keith tells me I am the heart of our family, but he has been the glue that holds us all together. Its not easy raising a family and adding special needs to navigate definitely adds to the stress of life. I can’t even express the magnitude of effort and love Keith gives to our family and our marriage. He works hard to provide for us and then comes home and is present with our family every night. He too is a treasure, and I am so blessed to have him as my husband.
One of the things our family does not have is a family portrait. We basically quit trying years ago because the stress of the event was just too much, and we never got a picture worth framing. I stopped doing Christmas cards because I never felt I had a picture worthy of sending out. As you know, getting Kaelin to smile for the camera is quite a feat. It makes me sad that my kids have mostly all grown up and we’ve never been able to capture our family in a beautiful photo.
I hope you will consider us as your 2019 family. It was truly an honor to work with you in 2017, and I would love to do it again! Thank you for considering us!
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