A life less ordinary?

Many of you have asked ‘How do you cope’ as a parent of a child with ichthyosis?  And I find it a hard one to answer.  Firstly because in the early days I didn’t cope very well, but also because looking after a child with ichthyosis isn’t all that different to looking after any other child, it maybe (no, definitely) just takes a lot longer to get them ready in the morning and you have to make some adjustments along the way.

In the beginning we had to adjust to an unexpected medical condition and we adopted a routine that worked for Alfie.  As time has gone on, that routine has become our new normal and we do it mostly without thinking.  Alfie was our first child so we didn’t know any different really, we had no real idea of what to expect as new parents let alone what to expect with ichthyosis.  So when we became parents for the second time, it felt a whole lot easier with Rene; partly because we knew about feeding and nappies and sleepless nights and also because the getting bathed and changed routine was way more simplified.  Sometimes when Alfie stays at my parents and I only have myself and Rene to sort out, I am up and ready so fast that I don’t know what to do with myself.

Our morning and night-time routine is different to most families but we have found one that works for us.  It is long, it can be torturous (when as any parent of a 4 year old will tell you they do not want to sit still!), it can be emotional but it can also be a lot of fun.  We talk, we play games, we watch shows on the ipad, we listen to the radio and sing along just as any family would, we just do it for a lot longer than most!

Having a child with ichthyosis can be mentally tiring sometimes especially if, like us, you want your child to be able to do everything that other children are doing, you want them to join in and be part of things.  Sometimes allowing your child to take part in certain things requires an adjustment or requires you to think ahead and plan for stuff that most parents don’t have to.  Sometimes my brain hurts from having to think ahead all of the time and I do occasionally wish that we could just go somewhere spontaneously without having to pack a bag full of cream, dressings etc.  We would like to not have to worry about the heat/sun/muddy puddles/sand, but we do because we want our child to be able to enjoy those things in a carefree way.  We worry about those things and we overthink everything so Alfie doesn’t have to.

I have been thinking a lot about disability and equality recently and what it means.  If you ask some people about what equality means to them they will say that everyone should be treated in the same way…but I don’t necessarily agree with this.  If you treat everyone the same regardless of ability, it would actually disregard any differences and would not be inclusive.  For example, if we expected Alfie to be able to walk as far as everyone else he would end up with sore feet and blisters, so we make an adjustment; if we expected him to be able to jump in the swimming pool without extra cream on first he would be very dry afterwards.  Equality for me means making those small amendments to life to enable Alfie to do things that others do, it means not discriminating against him because of his skin, it’s not expecting him to be the same as everyone else because he isn’t the same as everyone else, it’s accepting the differences and embracing the individuality. 

Many people also say to me “I wouldn’t have coped with what you have” and my response is that you would because you have to as a parent.  When you are faced with something unexpected as a parent you have to step up, you have to deal with things as best you can, sometimes you have to put on a smile even though you don’t feel like it.  Parenting is not easy in any shape or form, it’s probably the hardest job in the world (aside from being in the SAS or something, I definitely couldn’t do that!!) and whatever your child throws at you (figuratively and literally in some cases) you will find a way of dealing with it, maybe not instantly but you will. 

As parents we fight and push for things when we need to but we need to remember that we are human and it is ok to feel angry, upset, guilty and scared at times.  We must make sure that we have a good support network and that we have people that can understand what we are going through. As parents of a child with a medical condition we also have a responsibility to learn about the condition from other families and from people who actually have the condition.  We don’t have first-hand experience of what ichthyosis is like, what it feels like, so we have to listen to others and learn.

So a life less ordinary?  Maybe a little but it is our ordinary.