Welcome to the club,
Welcome to the club, the club nobody asked to join the parent to a kid that has a special need (a diferent type of perfect) club. There are no secret handshakes, no joining fee and everybody is welcome so welcome.
If you have just heard about this club then most likely you have just found out that you eligible to enter, you have just found out you are going to have a kid with a disability or illness that will change everything for you, your family and of course your child.
If you have become eligible without knowing you will be no doubt be caught in a whirlwind of activity, your child may be in intensive care maybe in room one (where the most fragile kids begin their journeys) or maybe at room 5 (the “departure lounge where you are almost ready to go home). You will have doctors coming to see you to talk about your child so you know what is going on, this seldom works as you are struggling to hold on let alone try to understand the words and terms they use. You will get visits from social workers, priests, nurses, family and friends but none of them can make this place you are in feel ok, it is ok to feel this way.
Everything has changed, everything.
I began my journey like you have, although every journey is different in many ways the fundamentals are the same for all us parents in this club. You have to rethink everything and try and find some stable footing in a place where there is very little stable ground. You will be facing emotions that will wash over you in waves so strong you cannot stand up and you want to run and scream. You will be angry, scared, lonely, confused and lost and every one of these emotions will continue to wash over you, today tomorrow and always. You will get used to these things, you will learn to control these feelings and you will find stable ground, eventually.
Membership to this club requires a moment in time where you stand by and watch everything you expected fade away. You will need to rethink everything and start a plan on how to best get through this, you will get through this one way or another, you have no choice. You will find strength you never dreamt you had, you will do this. Breath.
None of these things are important now as you will have a lifetime to come to terms with these things. Stop for a moment and breath. This is the road you are on. It will be ok. Breath and face each minute at a time, you will live by minutes in the beginning, then hours, then days and eventually you will have time to look beyond, that time is not now, breath. Your baby may be in a little plastic box attached to machines, wires going in, coming out and you will be watching them throuh the plastic aching to hold them. Like everything that time will come, you will have “skin on skin” time when you can whisper stories into your childs ear, stroke their skin and fall in love with the amazing human you have created.
They will tell you what to expect, what your child may or may not have, what they may or may not be able to do and in some cases if they may or may not live. You will have many conversations like these, today tomorrow and forever, you will also learn with time that those experts are often wrong. Statistics are broken and children excell even when others believe they never will.
Wish upon as many stars as you need, the stars are endless.
Cry, cry as much as you need to it is ok. Scream and be angry as much as you need to, it is ok. Find people who have been where you are now maybe a week ago or many years. Only they will truely appreciate what you are feeling, nobody can possibly comprehend what you are feeling and facing, welcome to the club. I have been a member of the club for 3.5 years now, I still recall the day I became eligible to join like it was yesterday. I remember the smell of the rooms, the noises of the machines, the feeling of reaching into the incubator to hold my daughters tiny hand, I recall the moment the doctors told me my daughter was a different type of perfect (he used another term “brain damaged”) and I recall feeling so very alone.
You are not alone on this journey, there are thousands of us in the club already. Each of us knows everything you are feeling we feel it in our souls because the feelings will always remain. The journey is long but there are amazing things to discover along the way, you will find joy that others will never experience. You will be ok, breath just breath. Get past the next minute, one at a time.
Welcome to the club, you are not alone.
Kelly “Boy” Dugan
Founder SmileDial NZ INC (The Club)