We are NOT USED TO IT!

“I bet you are used to it now” “it’s not as worrying for you is it? “ . “I guess you expect it” just a few of very wrong statements spoken to me regarding Daniel and our time in hospitals.

Let me explain something for you, being a parent of a child with complex needs is something we deal with, they are our children, and we love them dearly. We care for them the best that we can and try to cope with everything we have to face but believe me we are not ‘used to it.’

When our children have to go into hospital, we still feel fear in fact I wonder if our experiences mean we actually feel more? There have been times when I have sat there listening to the Drs ordering tests, talking to one another in the jargon of the medical world and I have wished that I was naïve, that I didn’t understand from the barrage of tests they have ordered the severity of the issue. That whilst of course I would be fearful and worried if this had been the first time my child had been in hospital, I don’t believe my mind would be going to the dark places as quick. Ignorance being bliss some may say.

Being a parent of a child with complex disabilities I freely admit we spend a lot of time at our local hospital or at the specialist one. I may have learned to expect it, but I will not ever say I am used to it. Each time I have to make that call to the assessment unit my heart is in my mouth and my anxiety is climbing high. Every time the Dr says “bring him in “my mind feels fear, this is not someone that is used to it.

What actual upsets me about the statements presented to me in the previous paragraph is the fact that they take away from my child. They rob him of the consideration and care that should come his way, sometimes from those who should know better.

Speaking to other parents with children with disabilities here are some of the things they have told me about how they feel. (anonymized for fear of upsetting family etc.)

“A balloon, all I wanted was for her to have a blooming balloon. There she was facing her 5th surgery but not one family member or friend reached out to us. Yet in the bed facing us was a young boy having a toenail removed, he had over 5 balloons, a new teddy bear and so many people around his bed. I saw my daughter’s face as we sat there alone, family and friends had made the assumption that we were so used to it that moral support wasn’t needed. My daughter turned to me and just asked that if she could have a balloon next time, my heart broke.”

“Three weeks we were in there on our last admission and no one bothered to visit, three whole weeks. I had to sit there and watch others have bedside full. It’s so hard being in hospital besides the worry and fear of your child illness we also have to entertain and occupy them. Often, I felt that the walls were closing in on me. Is it awful that I am glad that my child didn’t understand?”

“I didn’t eat for days, I could not afford the shops in the hospital, how it upset me to see family and friends bring in take away for others. Those who were in for a day or two, how just wished someone had just asked, finally one of the nurses noticed that she hadn’t seen me eating. I was so embarrassed to admit I could not afford to. They were brilliant but I was ashamed it’s not like I have a small family, but they just assume it’s the normal for me, how can hospital be normal? “

How my heart broke when I read these comments and to be honest there were many more, but I hope what I am trying to convey is clear, hospital isn’t the normal for anyone and we are not used to it”.

Personally, I can emphasise with each and every one of these statements. Especially when Alan used to be self-employed, I would spend whole days on my own. Hospital is a scary place for any child and no matter how much I joke that Daniel loves to visit his nurses the reality is far from it. His anxiety in hospital is intense, I cannot visit the bathroom without someone caring for him, this has led to numerous struggles with dehydration and water infections for me. If we had a visitor or two this would be eased dramatically. I know no one likes a hospital but it’s no excuse. Also, a balloon, a simple balloon how I hate that because we are frequent visitors Daniel’s bed space hangs bare, this hurts probably more that I realised until I typed this and before anyone starts going on about it being expensive buying balloons etc please read this again and deeper this isn’t about the financial outlay for Daniel but the fact that he matters, a handmade picture would do.

So, what can you do to support those you care about who have to spend time in hospital with their children?

Well, it’s simple really, think about them, reach out to them

Send them a text or make a quick visit.

Ask them if there is anything they need, shampoo, socks a good book?

Could you bring a sandwich in for them or a home cooked meal, do they need any bottles of water, etc? I cannot tell you how desperate I am for vegetables when I leave hospital after living on microwave or take away meals. If you cannot visit could you send them a food voucher for one of the numerous delivery companies. I know this would be appreciated by so many, the cost of eating whilst in hospital is a big issue for a lot of people.

Is there anything that would brighten their child’s day, do they want a colouring book, a DVD anything that suits the needs of that particular child. Anything that shows the child that you care.

Do they need their washing doing, offer to sit with their child whilst they take a shower, have a walk? Anything that gives them five minutes out. Whilst I know that cannot always happen due to some children’s needs it’s so nice to be asked.

In all honesty I think most people know the ways they could bless the parents but because of the lie that people believe that we are used to it they do not offer.

I guess I hope this post destroys that illusion.

Whilst having a child with disabilities means we have to be prepared and can expect to be in hospital often, it does not make us used to it.

Please don’t forget that the core of this is our child who is ill and needs support, disabilities or not this hurts and this brings fear. The frequency of this need does not reduce the impact. We are not used to it….