Below post written so eloquently by Zoe's mom - especially meant for those that are new to the diagnosis.
Today marks exactly 3 years since our daughter's Phelan McDermid diagnosis.
3 years that have completely and utterly changed us. Changed our lives, our ways, our priorities, our way of thinking, our everyday living, our expectations, our aspirations. Changed us, as people. For the better.
Yes today, we are better people in all aspects.
When this unforeseen diagnosis came upon us, all we could feel was numbness, fear and sadness.
I spent days crying on my own, feeling helpless. And hopeless. Νot knowing how I was going to navigate through all of this new information, let alone function with this new data. How was I supposed to do this? What did it all mean? Why did this happen to us? How were we supposed to know how to deal with a medical case that no doctor was able to help us with? They were even more clueless than us. You go searching for answers, and all you get is faces of awe, as you tell them things they have never heard before. The same people that you have gone to be advised by and you pay. Cost? Lets not talk about cost. Emotional or monetary. Red tape? Don't even get me started.
Our daughter needs help and supervision for almost everything all the time. She needs someone to teach her the simplest task and keep teaching her that same thing over and over over, and just as you feel, "well she got the hang of it", she stops doing that same task you have worked on for days, weeks, months, and it might be lost, part of it or all of it, and it may come back, but it may well not. She is completely non verbal, but every now and then she speaks a word and you get all excited and that word never happens again. She goes through sleeping spells and we get some rest and then for months on end she wakes up in the middle of the night for no apparent reason and goes back to sleep after 15-18 hours straight. Some people think we are exaggerating. We are not. I could go on and on. Her being, is an utter surprise to us all.
Living in despair you think. Well let me tell you. This new life, this unexpected raising-a-child-with-disability-life-that-never-occurred-to-us life, this life is full. Full of enjoyment, laughs, little daily achievements, new experiences and wonderful people. We take nothing for granted. On this path we have come across some amazing people, each facing their own battles. People that have helped us realise how strong we can be. And people that have inspired us with their actions and strength and stamina. And also people with compassion and true spirit of love that have helped us cope with everyday tasks and have taught us that thinking outside the box is a necessity.
Forget anything you knew. This is not a textbook case. None should be really…
Why do we all have to fit in a box anyway and live with milestones and musts.
To all of you out there, I want to say. These past three years may have been extra hard. But fear not, we are not unhappy, we are not miserable. We are living life in our way, in Zoe’s, Rodoula’s and Petro’s way. Our daughter may not be the typical 6 year old little girl you would expect, bombarding you with questions and putting on mummy’s heals (I never wear those anyway- can’t walk in them) or playing with dolls and girlfriends or whatever 6 year olds do anyway. But she is the most amazing little girl I could ask for! She is full of laugh and mischievousness, joy and true pure love.
We are doing this in our own little way and we are enjoying ourselves along the way. Yes, there are days that are harder than others. And yes there are days that are full with what ifs and what will… And yes we are not getting enough sleep no matter how hard we try. But we are good. We are not overjoyed with this syndrome invading our lives and taking on. But we have come to accept the fact that our lives will be different and it is up to us to find happiness in the little or bigger things.
So new families out there, faced with this or any other diagnosis for that matter, know this. You can do this. You got this. It is not easy, but it is definitely worth it. Every. Minute. Of. It.
Three years marked. Never thought on the day of the diagnosis that I - we, would be able to cope with any of this. But we are. In our own little way.
Stay strong. Love you all.