“I don’t know how you cope…”

I get this all the time, from well meaning people.. ‘I don’t know how you cope’… ‘I couldn’t cope as well as you’.. It’s meant as a compliment, and I generally react as if I have taken it that way. I know it is meant to be nice, meant to be supportive.

What people don’t seem to understand is how telling the parent of a child with additional needs that ‘you don’t know how they cope’ gives the impression that our lives are purely about ‘coping’.

‘I couldn’t cope as well as you’, how do you know that for sure? Unless you have experienced something you cannot say you wouldn’t be able to cope. Upon receiving a diagnosis, whether that diagnosis be something as common as eczema, asthma, or something like spina bifida, you will always have that worry. That fear that you won’t cope. In reality, it isn’t about ‘coping’. It is purely about love. I know I speak for all parents (I hope!) when I say, we all have one thing in common; we all love our children unconditionally.

For you, that may mean you take them to the playground in the rain because they asked you to, it may be cutting the crusts off their sandwich, or reading them that bedtime story ‘just one more time’ even though you are shattered beyond a level you would have thought possible.

For me, that means I look after Harvey’s extra needs. I do things others don’t have to do, so that I can keep him healthy. I bring him to countless hospital appointments, and when he is an inpatient I sleep in a chair.

You see, we all have things we do to care for our children’s individual needs. The individual acts I do may be different, but overall I am just like you.

If I saw your child demand crusts off their sandwich, or the blue cup, or any number of things that your child needs to feel safe, secure, loved and listened to, I wouldn’t say to you ‘I don’t know how you cope’. You are being a parent, as am I.

It isn’t always easy, but that is the same for everyone. We all have moments where we struggle. Children like to push our buttons! For me though, I don’t feel like parenting Harvey is purely about coping. I enjoy being his mother. I would literally kiss the ground that child rolls on, he is my everything. There are days when I may just cope, but overall I relish in the role that is being his mammy.

There is a big vote happening soon here in Ireland. The vote to repeal the 8th amendment from our constitution. I am not going to tell you how you should vote, nor am I telling you how I am voting. Those who know me well already know how I will be voting but that isn’t why I bring this up. Regardless of whether it is repealed or not, women in Ireland will have abortion raised by their maternity consultant if they receive a ‘severe’ prenatal diagnosis of their unborn baby. Not everyone has had it brought up, but I, and many like me, have had it discussed at the time of diagnosis.

Whether it is repealed or not, if you receive a diagnosis I just urge you to not make any quick decisions. It is a very overwhelming and slightly terrifying position to be in for a lot of parents to be. Get on to support groups and get to know the people living the lives. I bet you at least half of them at one point in their lives thought they wouldn’t be able to ‘cope’.

Information given out by consultants is always very glass half empty. They have to give the worst case scenario, which is why abortion may seem like it is in the best interest of the child, so they don’t ‘suffer’. Amongst the debates that have happened over the last while I have had people say that Harvey suffered. Whether he did, or did not, isn’t the point. We all have moments throughout our life where we suffer. Many of us have had broken bones, surgeries, lost loved ones etc. Yes we suffered, but that doesn’t mean that is all we experience in our lives. The same goes for Harvey, and many children and adults with disabilities. They have had times that were less pleasant than others, times where they are in pain, times where they suffer. That’s life. Overall, Harvey is a very happy boy, and I am sure he will be a very happy man.

“Life is not the way it is supposed to be.. It’s the way it is. The way we cope with it, is what makes the difference.”