Cognitive Age: 9mos – 1 year
Therapies: OT, PT, Speech
Siblings: Dyllan (13), Robert Jr. (11), Ronan (9), Bretac (6), Teyla (5), Korben (2), Nyomi (2 week)
Parents: Robert and Sonya
Kabuki Symptoms: Swallowing disorder, hearing impairment, visual developmental delay, cross-eyes (corrected with surgery), short stature, underweight (until recently), microcephaly dysphagia, Gtube, born with deformed hips and legs (corrected with surgery) spasticity, born with very stiff muscles, reaction to vaccines, seizure disorder (has “absence” seizures most of the time does have bigger grand mal seizures sometimes) didn’t sleep at all as a baby didn’t sleep thru the night till age 8, incontinence of both bowel and bladder, muscle weakness when younger, lack of coordination (also when younger), recurrent ear infections and other infections, lack of immune system (common variable immunodeficiency, unspecified HCC), abnormal gait, receptive expressive language disorder, severe intellectual disability, autism spectrum disorder, lymph nodes that swelled up and stayed hard for years had to be removed via surgery, gynecomastia, curved spine, sleep apnea, a hernia in his esophagus went undetected for a year which caused him to puke ALL the time (we had to feed him with a g/j tube and suction out his stomach acid, and even then he would puke 30 or more times a day often causing aspiration pneumonia), high arched palate, he has missing adult teeth and was born with a natal tooth, small jaw, he licks everything but won’t/can’t eat by mouth, very sensory seeking and is usually happy, his hands are shaped differently than my other children, big eyes and long eye lashes.
Teal’c’s journey has been a fight from the start. Early in her pregnancy, Sonya learned that Teal’c had a two-
vessel umbilical cord where a “normal” pregnancy umbilical cord has three. Being her fourth pregnancy, Sonya
knew even before then that something wasn’t right. So when the doctors told her about the cord, they advised
her to terminate the pregnancy because Teal’c would never survive. Unfortunately, this is not uncommon for a
lot of us, and like those of us that heard it, Sonya and Robert decided to see what God had in store for them.
At 35 weeks into her pregnancy, Sonya went into labor and delivered Teal’c. He was small, weighing just 4
pounds and 6 ounces, but he was definitely alive! Which, like most of our Kabuki kids, he had no problem
letting the world know, emitting a high-pitched scream. Sonya describes the scream as, “music to their ears.”
And then Teal’c was whisked off to the NICU.
During Teal’c’s three-week NICU stay, the doctors were able to determine lots of issues. But they neglected to run DNA tests, so the family had no idea what they were dealing with. They went home alone and utterly unprepared for what this amazing little baby had in store for them.
Over the last eight years, Teal’c has been hospitalized an uncounted number of times, endured surgeries to correct various issues, had therapy to help him develop, seen countless specialists and has watched his younger siblings surpass him in every aspect of life. In spite of this, Teal’c remains like a typical Kabuki kid: happy. And right now, he has reason to be happy. Since having surgery a year ago to fix his hips and legs, Teal’c is now walking with a walker and has surpassed the doctors expectations! And with the discovery of his compromised immune system, the IVIG has kept him in a much better place health-wise. He still takes multiple medications for his seizures, but he’s happy, which makes how well he is doing even more fantastic!
With his severe cognitive and developmental delays, Teal’c is still totally nonverbal and has been unable to learn sign language. Living independently is not likely an option for Teal’c, but the Lillis’ are taking it one day at a time. For now, Teal’c really enjoys playing with boxes, watching the washing machine on the spin cycle, licking things, textures, being tickled and high-fives. He also enjoys loud music at home, cuddles, his routine and being surprised by a sudden noise or movement (but only at home!).
Life for the Lillis family hasn’t been easy these last eight years, but since getting his Kabuki diagnosis at age 7, life has begun to get a little bit easier. What the future holds for Teal’c and is family remains to be seen, and while it’s uncertain how much time they will have together, they have vowed to keep fighting as long as Teal’c does. In Sonya’s words, “Teal’c has taught us to find the joy in every day. He has taught us to love unconditionally and to smile when things are tough. Teal’c has caused our faith in Jesus to grow. We have seen times where we were certain that he would die that God brought him back from the brink. We’ve seen so many miracles. Just the fact that he’s standing here next to me as I type is a miracle.”
Teal’c certainly is a miracle, and it’s clear why the Lillis’ were God’s choice to be his family.
Teal’c’s Relationship With His Siblings: Sonya describes her children’s relationship with Teal’c as, “a very special one.” The older kids help with Teal’c’s care, changing diapers, administering tube feeds, etc. They enjoy showing off his tube and explaining to people that’s how he eats and they like to push him in his wheelchair wherever they go. They all get excited when Teal’c learns something new, too! The younger ones have a different relationship with Teal’c. They are about the same age developmentally, but Teal’c is much bigger and can scare them with his full-body hugs. For Korben (2), he hasn’t figured out what to do with Teal’c and tends to be afraid of him. Korben may not understand it, but when Teal’c is quiet, Korben is known to kiss his face or pat him, and is even showing interest in pushing the syringe as Teal’c is being fed. As the younger ones grow, they will learn just how amazing their big brother is, despite his size and different abilities.
Advice for Kabuki families: “Hang in there, you’ll get the hang of this. The ride won’t be easy, new and scary things pop up all the time, but the joy of your child’s smile and the strength he or she shows you in the midst of their struggle with give you what you need to go on.Surround yourself with doctors who can help and get rid of the ones who don’t. Your friends will change. Some will leave because they can’t understand what you are going through, but you will find new, stronger friendships. Your family, the ones that stick by your side, will become closer than ever to you. When they love your child as much as you do, you will grow closer than you ever imagined. Your life will change, and it will be hard, but years from now you will look back and see the strength and the joy in the struggle. Eventually you will realize that this was how it was always meant to be. You will grow. You will change. Your child will be your greatest joy.”
Advice for parents of “typical” children: “I guess I would want them to know that even though the journey is different and hard we still have the same feelings that other parents do. Our fears are usually bigger than the latest case of sniffles and we can’t always make commitments out side of home because our child has such great needs. We want other parents to understand that we still need friends and that the life of a special needs parent can be very lonely and isolating.We also want other parents to know that even though our child looks different he isn’t contagious, and it’s OK to ask questions. It’s OK that your child stares when he or she sees the tubes hooked up to our son, it’s different and they are curious. Let them ask, let them come and see.We also want other parents to understand just how hard it is for us to go to public places with a child who is so very disabled. There are issues with handicap access---many places don’t have that and we end up having to carry him which is very hard to do. Changing him is difficult---he’s far too big for a baby changing station. Some places we avoid because there is no other option but to change him on a dirty bathroom floor. Some places we avoid because it overwhelms him…sounds, lights, unfamiliar surroundings can be too much for him. We wish churches and play groups would be more accommodating to our needs but because we don’t want to impose ourselves on anyone we won’t demand it, instead we just retreat to places we know we will be accepted and have access to.
We want other parents to know that it’s OK to not know what to say. We know that our struggle is far more than many parents have ever had to deal with and it’s hard to wrap your head around it. That’s OK. We can still relate to you though, we still take joy in the accomplishments of YOUR child so it’s OK to share with us.
Basically, I guess it comes down to acceptance and understanding. Most of the time I feel like I’m probably the worst friend because I can’t just be there for other people when I have so much going on at home. I have to cancel plans all the time, drop out from social activities and, especially during cold and flu season, isolate ourselves for our son’s sake. But that doesn’t mean I’ve forgotten you. That doesn’t mean that I don’t need you or want you in my life.”
How Teal’c has impacted the family: “Before having Teal’c I was very uncertain of myself. I already had 3 children, they were all young, but I wasn’t a confident parent. I also had never been through something so traumatic.Having Teal’c has brought me to the ends of myself and forced me to go deeper into faith in Jesus. It has given me a different perspective on life than what I had before. It has shown me how even little things that we take for granted can be beautiful moments. He has taught me to live as if each day were our last, and enjoy every moment. Having Teal’c has shown me how strong I can be, given me a voice when I had to stand up for his very life. It has brought my husband and I closer together, and taught our children a special kind of compassion they would not otherwise have. It has shaped our lives, changed who our friends are, brought us to places and people that we never imagined. Having Teal’c has brought tremendous blessings in our lives, as well as tremendous struggle.”