There is a famous poem by Emily Pearl Kingsley called Welcome to Holland, I am sure that many of you have read it or heard about it. If you are a parent of a child with a disability then I am pretty certain that many well intentioned folk have emailed it to you, repeatedly until you can almost rattle it off by heart. If you haven’t read it then do a quick Google search as it is actually worth a read, the author describes the experience of having a child with a disability to planning a holiday to Italy, she describes the excitement in anticipation of the experience and the plans that you have made for your time in Italy, but when you land you find yourself in Holland. It is not the trip that you planned and despite your initial disappointment you actually learn to love being in Holland.
All very nice. However when I had Jack I felt as though I had landed in a bloody war zone and not Holland, I did not see any tulips or Windmills ( I did however hallucinate a Spaniel in the bedroom through sheer exhaustion, we didn’t own a spaniel or a dog of any description actually ) I also felt ridiculously ill equipped to deal with this new land. I had read all of the books on what to expect when you have a baby,so I was fully prepared for night feeds where I would sit in a rocking chair breast feeding my baby whilst Mozart played in the background. Yes I would be tired but one look at my sweet smiling baby would make all of that fade into insignificance. The reality was so very different.
For a start Jack did not sleep, and I mean ever!! This kid thought that sleep was for the weak. Our nights were spent pacing the floors with a baby that contorted his face and body into unimaginable shapes, all the while he would keep up a steady stream of high pitched screams that penetrated my soul.
He didn’t eat either, it was virtually impossible to get him to take a feed, he couldn’t breast feed as his suck reflex was practically non existent. If by some miracle we managed to get some milk into him he would inevitably vomit it back up with such force that it would shoot several feet across the room. Then he would be hungry and so the whole cycle would start again.
He cried – a lot.
Days , months and years were spent supporting Jack to do his physiotherapy exercises to enable him to do things that many parents take for granted. He sat unaided at 12 months, crawled at 2 years and took his first steps at 2 years and 8 months ( these huge achievements are forever etched into my memory and my heart) . We also had endless appointments with Doctors, therapists and often lawyers to get Jack the support he needed, all the while we were completely exhausted ( did I mention that Jack didn’t sleep).
I also firmly believe that as a parent of a child with a disability you go through an intense period of grief, grief for the loss of the child that you thought you would have, grief for the child that you do have and all the struggles that they will face, grief of the loss of a dream for your family. The Kubler Ross model of grief identifies five very distinct stages.
So let me just talk you through my journey through the stages.
Denial. For me this involved a lot of thoughts like, this cant really be happening to us, disability happens to other families. He will catch up with his peers once he starts to walk, talk, eat etc. I remember when Jack was around two years old I took him to a mainstream play group, while all the other kids ran around playing and having fun Jack clung to me and sobbed, I still didnt understand that the poor baby was completely terrified and didnt know how to join in.
Anger. This was quite a big one for me, I was angry with everyone and everything. I went through a whole “Why me?” stage. I am ashamed to admit that I struggled as I watched Jacks peers overtake him, I was angry when someone close to me had a healthy baby , not for a minute did I wish any harm on them or their beautiful baby but it was really hard that they had what I didnt.
Bargaining. Now this is the one that will make all of the people that know me well laugh. I started going to church again, having been a lapsed Roman Catholic for around ten years. Please dont misunderstand, I support and celebrate any persons religious beliefs and would fight for the them to have the right to practise that belief, but religion just isn’t for me. Nevertheless I spent hours at Mass plea bargaining with God to make Jack better.
Depression. Yeah this one lasted a good few years, weirdly I dont remember too much about this as I was taking a lot of medication, I do know that I isolated myself from people as much as I could and took great comfort in food, a legacy that is still with me today.
And finally acceptance. This is where we are today. I think complete acceptance came for me when Jack was around 6 years old, this was it, this was our life. I still have the odd moment where a friends child will achieve something like passing their driving test and the realisation that Jack will never drive hits me like a physical blow, but I move passed it quickly these days, I dont cry for hours over what I can not control.
Our family life is amazing, Jack and Lucy are amazing. I couldnt love them any more if I tried. Yes its bloody hard and I am sure it will always be hard, however I am far more resilient these days, in fact I would go as far as to say I am now a tough old bird ( well unless it comes to the kids school concerts and then all bets are off) . It may not be Italy or Holland but we have settled into our War Zone, we now have the essential skills and experience to survive, we can appreciate the beauty and the uniqueness , and do you know what? Life is good.