Living with Costello Syndrome

When Aidan was diagnosed with Costello Syndrome, something instinctively within me knew… this was building my calling for a higher purpose. 

I’ve always wanted to affect people’s lives in the largest possible way, and I certainly have been through those dark and heavy “dramas” of life that would qualify me to help people through, and into the other side where the sun shines again. And it does shine again… I promise you. 

Grief is a messy thing to experience. I’ve experienced it a few times. I’ve been divorced, I’ve walked away from relationships that I thought I would never recover from. I’ve experienced death. I’ve experienced abandonment. I’ve experienced toxicity in relationship to a partner that SHOULD have killed me. And then… I experienced the devastating diagnosis of my son… and my whole life collapsed around me. The idea of what could be… fell to pieces, and I had to salvage my sense of survival during the darkest time of my life. 

Somehow, when these devastating times hit you… your previous confidences of what you can accomplish, become a distant memory, and you literally have to cocoon yourself from the world and heal, before you can effectively regain your composure, and then, look after those around you that have been entrusted into your care. 

I learnt a valuable lesson in taking care of myself as a mother first. I’m mom to a special needs child … which is phenomenal. But I had to learn that it was ok to have special needs of my own met FIRST, so that I could be the best Mom for Aidan. 

The areas I’ve struggled with since his diagnosis have been my stress levels causing devastation with my health, … mainly stemming from adrenal fatigue, which in turn has sent my weight (*a very personal subject for anyone battling the bulge*) skyrocketing, and my energy plummeting. 
Eating “clean” and exercising sent my weight (and health) in the opposite direction to what I was aiming for. 5 minutes of exercise would flatten me for 3 days…. and gaining weight while I was eating a clean healthy diet just killed me. It shouldn’t have been surprising though. We as humans can only deal with so much at any given time. It’s our scale of entropy. 

Nevermind the physical reasons for not losing weight, but the psychological issues you are so often not even aware of that also sabotage your efforts… can be VERY muddling. 

Metaphysically we keep weight on to keep others out and form a layer of protection against intrusion… and I can definitely say that played the biggest role. But it took so much self learning and understanding and learning to SELF LOVE before I could process all my “baggage” and start recovery again. I’d been so good at running a business before I became a mom, and keeping fit, and working till all hours… and just being so full of energy. This NEW me, the one that battled to stay awake after 7pm, the one that battled to make ends meet, the one that didn’t look as fabulous in the mirror anymore with all this extra weight…. this was a real challenge for me to be gentle on myself and then still LOVE???!!! 

The last 2 years I started with various forms of coaching, counselling, self evaluation, and consciously deciding to go THROUGH the grief. To fully experience it. It’s been the hardest journey of my life. I realised that I was in denial of Aidan’s diagnosis for a long time. It served me, because at the time I actually couldn’t cope with it, with everything else that was going on. 
At the same time, I was dealing with the Anger phase. Because I was still in denial… my anger was deferred, and I lashed out at anything and everyone who was in close proximity to me. I was ANGRY at the idiot drivers on the road, I was ANGRY at the stupid teller who didn’t process my purchase quickly without botching up her simple task, I was ANGRY at the traffic lights that were out and the electricity that was out all making me late for my appointments… I was just ANGRY full stop!

Bargaining and depression are also phases of grief, and I certainly had my share and I chose to go through it without antidepressants, because something within me knew I was ready to do so. (It’s that scale of entropy thing again). I was tempted for sure. Nothing quite compares to the deep dark hell of depression… and the thought of staying there is absolutely unbearable. But I needed to FEEL those depths, and I needed to learn for myself what it was deep down in my psyche that kept me stuck, and kept those blocks up in my life, preventing me from experiencing my fulfilled purpose. 

I have to tell you… you will go through grief in your life, and some of you… many times. It’s the path of life. And you can choose to grow from it, or you can decide it’s enough. And that choice sits entirely on you. Nobody gets to decide what you can and can’t handle. Or even HOW you handle it. Only you. 

For me? Right now, I’ve chosen to live again. As a special needs mom, I know I will go through many cycles of grief as I have in the last 7 years with Aidan. His health issues are not predictable and the thought of possibly losing him on the operating table, or to cancer, or finding something ominous on his MRI scan… to anything else related to his health is VERY real. The possibility of him losing his ability to walk during his last operation were so real, the stress is still working it’s way out of my system. Just this last Friday I forgot about us being invited for dinner. I forgot to attend a function I was given tickets to last month. I forgot to give my plants water (ok that’s normal for me)… but I am now fully aware that it’s just the stress detoxing out of my system and I need to be gentle on myself. And those around me will understand and forgive me for my absent mindedness. 

Thanks to the miraculous friends (I say this because I feel they were divinely placed into my life), the emotional support I have had and the self understanding I’ve gained… I experienced the most amazing breakthrough the night that Aidan came out of hospital on the 16th July. 

Aidan had just been released after spending 5 days in hospital with a tethered cord release on his spine. We were away from home, in a hotel room in Cape Town, and after being immobile and in pain the whole week, he suddenly got up off the bed and started walking again. 

If I tell you I experienced an almost physical and spiritual weight LIFTING OFF of me that evening… it’s the only way I can explain the relief. As that happened… I felt and heard the voice inside me saying… “It’s over now”. It’s all over now… and NOW you can focus on you, and NOW your weight will come off. You are ready now”. 

The stuff we go through in our lives is for nobody else to judge, but for our own invaluable life lessons. I am so thankful for my path… as difficult as it is at times. I am so thankful. 
I have subsequently come home, settled back into routine with Aidan (if such a thing is possible lol), and just over 2 weeks ago started on my weight loss program. 
For the first time in 2 years… I’ve LOST weight. I’ve lost 3kgs and 10cm off my waist so far. My energy is indescribable… after falling asleep at 7pm every night… I’m now staying awake till 10 or 11pm and I have energy to play when Aidan needs that interaction. 

My scale of entropy has finally tipped in my favour and now my body is ready to shed it’s protective layers and change the bathroom scale.