My child has an invisible illness…..

Its hard to explain to people. The questions, “why is she not in school”, well, she is sick a lot, “oh, so were mine at that age”…. yes, but not like this, she is different. I don’t want to explain, just leave us alone. We didn’t take her out of school for fun or for attention.

We cant come to your house, I don’t feel safe there, I don’t know how clean it is, or what allergens are lurking. We are not allowed to go to busy places…. I don’t want to explain.

Im sorry we cancelled on you again, we are not lazy, we do want to take part but its really hard for me, for us to stick to things we planned. We need to take each day as it comes.

Im sorry I park in the spot reserved for mother and baby or pregnant ladies with my 6 year old. There are days when she cant walk very far without getting out of breath, she is too big for her push chair and I don’t have the strength to carry her so far.

Im sorry I am sometimes unreliable or wont set things in stone, Im sorry Im sometimes so tired I can hardly spell my own name or listen to you when you talk to me.

I sit and watch over my child at night, measure oxygen levels and temperatures and give medications.

Im sorry she doesn’t look sick. Im sure if she did it would be easier for you to understand. Some of the sickest people you will ever meet don’t look sick in the slightest.

So the next time you ask and I try to explain, please don’t say “oh but she looks so well!” or “oh, she looks fine to me!”. You are not her doctor, you haven’t seen her paper work. You don’t know about the bone pain that sometimes makes her cry walking down the stairs or the nausea that sometimes hits her and is so overwhelming she has to lie down straight away. Or the breathing issues or the tiredness that comes from fighting. I know. I know. She has an invisible illness.


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Oxygen watching…. again.

Is there anything worse then sitting and listening to your child’s breathing..? There is this fear that is just unimaginable. Like now, her fever is high, the wheeze is not so bad, but I can hear that she is starting to breathe faster… its like I am just WAITING. What the hell am I supposed to do? There is nothing I can do…. just wait. People don’t get it, no one gets it. I don’t need anyone to get it really, but the well meaning ‘oh, yeah, when such and such was little he was sick a lot too’ just makes me feel even more isolated and angry, because this kid is nothing like that kid, this is not a kid who is sick a lot, this is a kid who goes in to respiratory distress, falls unconscious etc etc, and it can happen at rocket speed! So I am sorry, sitting here watching my kid breathing… but that such and such kid that was sick a lot…. he/she is nothing like this. Im tired of this, Im tired of people not getting it, I am tired of it being belittled, Im tired of waiting… Im just so bloody tired. I wish (as horrible as it is) that there was someone out there who actually really ‘got it’. I think it would maybe, just maybe make me feel a bit less alone. I just want someone who understands, truly understands to give me a hug.

I know I know… I should stay positive etc, and I am always the one smiling, trying to laugh it off, shrugging with a smile and saying, ‘well hey, life goes on’ etc etc. I often tell people that we are the lucky ones, because its not a brain tumour or leukaemia etc. And I really DO mean it…. most of the time.

Its not so easy being that positive all the time. Its not so easy shrugging things off when fear holds your heart in a vice like grip and you think your brain might haemorrhage just from too many thoughts being in there.

I was talking to my husband the other day about what WE are going through, we as parents, and especially me as I am the one dealing with it all, and the truth is that if I actually had a job (which I don’t), I would probably end up being signed off for years due to hitting the wall, stress, burn out and whatever else you might want to call it. I cant be signed off of anything though, because this, here, sitting and listening to her breathing is my job, and there is no one else to do it.

How do you handle living like this? I have no idea… Im trying super hard to think about things like how the grass needs cutting and what we should have for dinner, although at the back of my head there is the hysterical voice going;

“ok its ok shes still breathing slowly, oxygen is 94 its still acceptable no need to panic just yet, what the hell should I do with V if we need to go to hospital, I wonder who will watch the dogs, should I pack the bag, wonder if there is a fridge in the hospital and if P’s mum can come and stay for a bit, shit what about the school party on saturday, is she still breathing for fucks sake calm down woman she’s ok we are still home just calm DOWN it will be ok it will be ok it will be ok… but what if its not, thank god she’s sleeping now, omg what if someone rings the door bell and wakes her, oh no… someone bloody well better not ring the doorbell I will KILL them, is she still breathing????”

Dr’s appointment in 5 hours and Im afraid its to late, that we will have to go to hospital before that……




Night time ramblings

Im sitting here, its late, and Im feeling happy and emotional at the same time.

Today was a really perfect day, I played frisbee with the kids in the garden, I did laundry while the kids played, we went to the pet shop for dog food, came back and took the dogs for a long walk. Celiac kid and big brother were running. It was nice. We came back, had dinner.

Normal day, nothing special right..? Only for me, the fact that we get to have these normal days is so very special. I think, for the first time in a very very long time I am more relaxed. I am trusting those lungs of hers to do ok, and I am breathing easier knowing that she is.

So my normal day… I am so grateful, so grateful for every single day like that we have.

There is a light , I can see the light, and maybe, just maybe, this crazy move we made will pay off, maybe we found our answer, please let it be so.

Its weird how the minute you decide to do something unconventional, like living apart from your husband, every Tom, Dick and Harry comes out of the woodwork and starts talking about how marriages will fail if you live apart, cheating spouses and failures, people who never once had an opinion about your marriage previously are all announcing pending doom. Whatever I say. Whatever. Really. None of them have a clue.

Living here, living apart is actually saving us, saving us all, because finally, we get to have these normal days. I get to play frisbee with my kids, and hang laundry and cook while they play and not worry that maybe now the wheezing has started and maybe now the cough will come and the issues that follow.

This is where we are not your average celiac family, because most do not have these issues that we have, if you are newly diagnosed I need you to know that if you read this, this is not the ‘norm’.

All we can hope now is that good gets better and better gets strong, and maybe celiac kiddo can outgrow some of these lung issues. Its really not fair that such a small little thing has to battle so many pneumonias. But if it happens, its ok, we live now, we take each day as it comes, try to stay relaxed, don’t make to many plans because cancelled plans are awful.

Today was a day that most people take for granted, and yet for us, it was one of the first completely normal awesome Sundays.

My son, my awesome trooper, my diamond, gave me a hug this afternoon and said ‘ thank you mummy for the bestest day’.