Child Spotlight: Kaleb
1. Please introduce your child and list the name of their diagnosis
Kaleb is almost 3 years old (will turn 3 on Oct 26) and has a life-limiting condition called Lissencephaly. This condition is a result of a genetic deletion of the LIS1 gene, and has led to Kaleb’s brain being underdeveloped, and lacking the gyri (folds and grooves) that surround the brain. Kaleb’s brain, instead, is almost completely smooth, severely limiting his ability to have intentional movement, process sensory inputs, and/or respond to said inputs. This condition also comes hand-in-hand with a list of other diagnoses, like epilepsy, cortical vision impairment, cerebral palsy, global developmental delay, non-verbal, hypotonia, and likely others that Kaleb will acquire throughout his lifetime. Despite all this, Kaleb is the light in our world. He’s the strongest and most resilient person we know and when he smiles, he lights up the entire room.
2. Tell us how this diagnosis affects Kaleb and your family’s day-to-day life.
Kaleb’s life is nothing like a typical toddler’s. Instead of playing with his peers at daycare, enjoying toys, and/or exploring the world around him, he is completely reliant on the adults in his life for all his daily living, including dressing, eating, mobility, and socialization. This has led to us building an entire team to support Kaleb in a manner where he can experience the world and reach his highest potential, with the goal of, over time, becoming more and more independent in doing some basic functions in his life. When we initially looked for providers that could assist us with Kaleb’s development, we struggled with finding the necessary supports locally, which is what led to us opening SMILE Therapy for Kids’ Calgary clinic (there are 2 other clinics in Ontario). Kaleb spends most days attending therapy appointments there with his various therapists, including physiotherapist, occupational therapist, speech language pathologist, and/or spending time with his nanny/aide or family members at home or in the outdoors. In addition to Kaleb’s therapy, he also has numerous medical appointments, with a typical week including at least one. He certainly has the busiest and most complex schedule of anyone in the family, but over time we’ve figured out a way to fit everything in and ensure that he’s getting the help that he needs.
3. What have you learned from your child and being her parent?
Watching Kaleb have to work so hard to master the most basic skills, which we all take for granted, has led to a true appreciation for how fortunate we are, and what a miracle life is. Kaleb brings so much perspective into our world; making stressing and worrying about insignificant problems a thing of the past.
4. If you could give any advice or guidance to a fellow mom receiving a new or similar diagnosis, what would it be?
When I first received Kaleb’s diagnosis it was by far the most traumatic and devastating event of my life. No parent ever wants to hear that their perfect child will have a severe, permanent, life-limiting condition. And I remember being stressed out, on top of everything else, by not knowing how I should react to an event such as this. I wish I had known then that there is no ‘right’ way to react to such news. I even, at times, felt like perhaps I was doing it wrong. There were so many mixed emotions – shock, grief, denial, numbness, devastation, fear, disbelief. So my initial advice is to not worry so much about whether how you’re processing what’s happening to you is the ‘appropriate’ or ‘best’ way, and instead just be. Just be with yourself. With your child. And feel. All the feelings are valid and right. Even if sometimes you feel nothing at all. That is also ok. Shock and trauma do that! Over time the fog will clear. Sometimes it takes months, a year (in my case), or even years, before you’ll start feeling like yourself again. Be patient and gentle with yourself. Also, find your tribe. Join facebook groups, follow social media hashtags of your child’s diagnosis, send DMs to complete strangers to learn from them and how they’ve handled similar situations to yours. Being connected to other families whom are living your experience will be crucial for deciphering your own path forward. Spoiler alert – EVERYONE is extremely supportive and giving of their time and knowledge! It is also critical for lessening the feelings of isolation, as, along with a diagnosis also comes the inability to any longer relate to ‘typical’ activities and interactions with friends/community/family. You’ve got this, mamas & papas!
If anyone is interested in following Kaleb’s journey, they’re welcome to request to follow his IG at @kalebsclimb. For those wanting to support families living with Lissencephaly or to learn more about the condition, go to IG @lissfoundation or www.lissfoundation.org. If you’re a family looking for developmental supports, you’re welcome to check out the Calgary clinic that we’ve built at IG: @smiletherapycalgary or smiletherapy.ca.