Hi!! My name is Taryn and I’m the wife to the amazing Vince and we are the proud parents to Our Young Warrior, Owen James DiCandilo. We live in Australia and have been together for 9 years and counting. Our little man Owen is 2.5 years old and at 11 weeks old was diagnosed with a rare genetic brain malformation condition called Lissencephaly, (sounds like listen-carefully) and Double Cortex Syndrome. This diagnosis grew once genetic testing was taken to a partial chromosomal deletion Xq23 deletion. Because of his condition he has quadriplegic cerebral palsy, cortical vision impairment and is globally delayed. Owen is totally reliant on those around him to feed, dress, position and play with him and is unable to do much on his own but he is the happiest, and smiley child I know who just radiates this indescribable aurora. You can follow our journey and share in the smiles through his Facebook and Instagram account and we also occasionally blog about life and different therapies we engage Owen in.
Miggy: Hi Taryn! Thank you so much for being here today and sharing your special needs journey and your sweet boy Owen with us. Let's start at the beginning, can you take me back to the day you knew things with Owen weren't "right?" Can you tell us about some of the signs and symptoms and how long it took you to get an official diagnosis? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Taryn: I had a dream pregnancy, hardly sick, and quite enjoyed having a bump. Owen wasn’t a huge mover inside and that did tend to concern me towards the end of the pregnancy but I was assured by doctors that everything was OK. Owen was overdue and therefore induced at 41 weeks and delivered naturally. Healthy crying baby at birth with weight, height and great Apgar test all being ‘normal'. We were sent home with a bundle of joy and told to enjoy life as a new family. He did have this thing called a sacral dimple which we had to get checked out at the bottom of his spine but an ultrasound was taken and we were given the all clear. It was a bit of a scare--I jumped to conclusions and immediately started thinking my son was going to lose all movement and feeling below the bottom of his spine as that's where the dimple was and also he tended to always have blue feet, but once we got the all clear we were on our way to being a healthy family of three.
The first few weeks seemed to be OK, I had a great supply of milk and Owen was feeding and sleeping....then 4 weeks of age hit and let's just say he seemed to wake up to the world and the crying began. He would cry constantly, if he wasn’t feeding or asleep he was SCREAMING! I went to the doctors, GP, Paediatrician many times to just be told that my child possibly had reflux or colic and that's what babies did--cry. Being a first time Mum I also think some people were thinking I was overreacting or being paranoid but I just knew something wasn’t right.
After reflux medications had been trialled and nothing really changed in his behaviour I started noticing a few other things. At around 10 weeks I noticed Owen wasn't focusing or following objects I would present to him, he was hardly smiling and was nowhere near close to laughing. I begged the paediatrician to send Owen for more tests. It was weird, it’s not that I wanted something to be wrong with Owen but I just had this feeling and I needed answers. We weren’t sleeping and the screaming everyday for 6 weeks was unbearable. It was agreed we would take the testing further, I was still assured by the paed that he presumed nothing serious was wrong and that some children just develop at different rates. We were sent to an Ophthalmologist, for blood tests and also an ultrasound on his brain. Ophthalmology was first and yes we were told Owen was delayed with his vision but not to be too concerned as he would catch up and every child is different right. We went away feeling a little upset but I still didn’t feel like we were at the bottom of it. Blood tests were done and then the ultrasound. I remember being in the room and the people were trying to use the machine just on Owen’s soft spot on his head, he was screaming and arching his back so much that we couldn’t even hold him still. My sister in-law was with me and we were both trying to calm him down. I remember the ultrasound person asking, “Can you please just make him lie still?” And I snapped back and said, “I’m trying and I can’t and this is why we are here as this is how irritable he is all the time!” I remember them taking ages with the scan and they kept going out and getting different people coming into to look. We were told that from what they could see there were some abnormalities but they couldn’t go into detail but our paediatrician would call us. My paed before the appointment had said we should expect to hear from him 2 weeks after the scan. I hadn’t even got home in the car and I already had a phone call saying we needed to go in the next morning. I knew that meant things weren’t good.
The next day we went into the paed, he got my husband and I glasses of water (he had never done that before--another sign something was up) we were sat down and told things weren’t looking great. He couldn’t confirm a diagnosis but he went onto say the unimaginable. Owen was going to be severely affected and his condition was serious. All I remember asking was “ Are we going to lose him?” He answered, “Not now”
This was a Friday and we were referred to the hospital on the Monday to go in for a MRI and EEG. After the longest weekend of uncertainty Monday came--an EEG resulted in abnormal brain activity and Tuesday came a MRI which was meant to take 40mins and took 2 hours. It was the longest wait of our lives and we were then called into another private room where Owen was diagnosed with Lissencephaly and Double Cortex Syndrome. We were told the future was unknown, to try not to read too much information online as the future would look grim. Being told he may not hold his head up, sit, crawl, walk or talk and have a shortened life expectancy due to severe seizures and respiratory issues. We were told we would be contacted by the early intervention team and we were discharged.
Our life as parents and the dreams we had for our little family all just came crashing down. I was numb, I cried for days, not wanting to get out of bed, not wanting to hold Owen or leave the house. The emotions and feelings I was going through was something I couldn’t never truly explain. I wanted people around and we had family and friends constantly popping in to our house. I didn’t have the energy to talk to them but just to know they were there for a shoulder to try on. It was really, really tough.
I look back at that now and think about how far we have come and how much joy Owen has brought to not only us as parents but our family and friends and everyone that meets him. Life is different now, that's for sure, but we are so blessed he is in our lives. He has taught us lessons and made us into the people we are today. I have grown far more than I ever imagined as a parent and an individual and I couldn’t be more proud to be his Mum!
Miggy: Most special needs exist on a spectrum, can you educate us about Lissencephaly and explain how it affects Owen as well as your day-to-day life?
Taryn: Lissencephaly, which literally means smooth brain, is a rare, gene-linked brain malformation, characterised by the lack of normal convulsions (folds) in the cerebral cortex and an abnormally small head (microcephaly). It is a life limiting disorder and Owen will require full-time care for the rest of his life. Symptoms can include difficulty swallowing, failure to thrive, muscle spasms, seizures and severe physcomotor retardation. Due to Owen’s Lissencephaly he also has the secondary diagnosis of quadriplegic cerebral palsy, cortical vision impairment, global developmental delay and although Owen has never (knock on wood) had a physical seizure he is on anti-epileptic medication. The statistics show that many children die before the age 10 due to aspiration of fluids, respiratory issues or severe seizures yet some will survive but show no significant development beyond a 3-5month old level.
Owen, Our Young Warrior, is affected in everyday life but is just so happy and takes it all in his stride as he knows no different. He needs our help to feed, dress, position, and play with him and we are always there by his side. His needs for those around him are ongoing and demanding but the gains he makes are all so worth it. Our days a filled with therapy appointments but many smiles and laughs also!
Miggy: What are the biggest worries you face for Owen? Conversely, what are your hopes and dreams for him?
Taryn: There are many worries we have... how long will he be with us? How much will he develop? Will he gain any type of independence? We try not to worry too much about too far into the future but live each moment as we can. Sure I am always searching the latest early intervention therapy techniques and what may contribute to help maximise Owen’s development as a child--but we try not to think about life expectancy and where he will be as he gets older as we are just enjoying the NOW.
I hope that he continues to be the happy little boy that he is, I hope he continues to be seizure free, and I hope he continues to develop and reach his own milestones--which may only be small comparing to the “normal” but are huge in our eyes.
Owen has just learnt to sit for short periods of time unassisted --this is HUGE--and now opens up so many opportunities for us to interact and play with him, we hope these only continue to grow and help furthering his development. All the hours of therapy are all so worth it when these accomplishments happen!
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Taryn: When Owen was first diagnosed we read that he may never show emotion, may never smile, may never laugh. Now if you have seen Owen's insatgram (@owenjamesdicandilo) you would see he smiles ALL the time and is quite a cheeky little boy that most days spends a period of it laughing.
Now Owen is very tuned into sounds--probably due to him being severely visually impaired-- but he finds it quite funny the sound of farts. Many a time my husband and I have entertained ourselves with this. Lets just leave it at that! HAHAHAHA!
Miggy: I know the difficulties that come with having a child who has visible differences. How can people best approach or respond to Owen? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Taryn: I guess I wish more people would approach Owen and attempt to communicate with him, he may not talk but he sure knows how to engage. Some people I guess may not feel comfortable or know what to say but the best thing to do is just get right in front of his face and just say hi, keep talking if he doesn’t give you much back and when he feels ready I assure you he will give you one of his big open mouth smiles.
I’m all about educating those around us. I was new to the “special needs” world prior to Owen and I only want to share with others. I would much rather people be interested and come and ask me to explain our situation rather than staring and not wanting to talk to us at all. I’m open to discussions and have always wanted to be open and upfront about Owen. I think it’s important that other children are encouraged to engage with him also. It’s amazing the response he gives other children when they take the time to try and play with him.
i know some people may not invite us to things because they may think we are too busy with appointments or because they are not sure how Owen will be in the situation, but just ask us and Owen can be the judge of that as he’s also pretty good at telling us when he’s not a fan of a situation. It’s a little trial and error through this journey.
Miggy: If you could say something to the mom who just starting on this journey of lissencephaly, what would you say? What would you say to yourself if you could go back in time?
Taryn: As Owen is only 2.5 yrs old I sometimes still class myself new to this journey, but going back to those initial diagnosis days my main advice would be to just to enjoy the precious child you have and don’t stress about what the future may hold. Cuddle, kiss and love them unconditionally and each day you will become stronger. As many a time I look like I have it all together, people think I’m supermum. There are also times where I question myself and have crap days also! Things will happen for a reason and certain things may not happen until the time is right. Your little one will make history in their own right and as long as they are happy and loved that is all that matters.
Miggy: What is the biggest lesson you’ve learned since becoming Owen's mom?
Taryn: I had always been a pretty organised person, some would call me a “control freak” but some things in life you just can’t control and Owen was a pure example of that! I feel truly blessed that Owen came into our lives just the way he is as he has enabled me to grow and learn each day in ways I never thought possible. I have become a stronger, more patient (although I still need to work on it) and loving person and have learnt not to be so quickly to judge.
Asking for help was something I was never really good at but it’s one of my biggest things I’m working on at the moment. This is a work in progress for me as that “control freak” tends to kick in again.
Just wanting to leave you all with something (source unknown):
In life it is not what
happens to us that matters,
but rather how we choose,
to interpret what happens,
and therefore who we
become as a result.
You know you have found
the hidden wisdom in your
deepest scar, when you
view it as your greatest gift.
Thank you so much Taryn. I appreciate your candor with how difficult those early weeks were in finding out about Owens condition. Those are very difficult days and difficult appointments and I think it's really important not to sugarcoat that. Of course, I also love hearing how much you've grown to love the new normal you exist in now. I can see Owen's light shining through these photos and I can only imagine what his energy is like in person. Like you, I hope parents will encourage their children to interact with kids of all abilities--it starts with children. So, so many good thoughts and words of wisdom! One of my favorites, "You're little one will make history in their own righting as long as they are happy and loved that is all that matters." Thanks again for participating and best of luck to you and your sweet family.
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Have a fantastic weekend!