Sick babies, a grumpy mummy and stupid lemons.

This is the first week in six that we haven’t had to travel to a hospital appointment. We have been at the GP three times. Three. Times. In five days.

H has such a rotten cough that she makes herself sick with it. She is struggling to sleep because the coughing wakes her up. She is miserable, my heart aches just looking at her poor swollen pink eyes.

She can’t hear our ‘shhhh’ing or our words of reassurance. She looks at me with such fear as she coughs until she is red faced and sobbing and hurling. I can’t sign to her that she’ll get better because she won’t let me put her down.

W cries for ages because his ears are so sore from an infection. He is streaming from his eyes. His chest rattles and his nose runs.

He can’t wear his hearing aids because they hurt too much so he is upset, disoriented. He can’t hear us call out a warning as he is about to fall because of his poor balance because of the infection. He can’t hear us explain what’s wrong, that the medicine will help, that he shouldn’t fight it.

I know that they will get better. I know that the infections will pass and they will once again laugh and smile and be willing to be left alone for a few minutes.

But I also know that by then we’ll be back at the hospital for more testing, more discussions, more results and more decisions.

I know that next week I won’t be crying because I am exhausted from lack of sleep and not having had the chance to clean my teeth or eat a meal for days on end.

Next week I’ll be crying because I’m exhausted from trying to get the baby to keep her hearing aids in, from teaching her sign language, from learning new signs myself.

I’ll be exhausted from trying to discipline my toddler whose language is poor and whose attitude is strong.

So you see, I’m particularly bitter about this week and about how very sick my kids are. Because, for me, it doesn’t end when they are better.

Because life just keeps hurling these God damn lemons at me. And I am working so very hard at coming to terms with the giant deaf lemon I get disproportionately bitter about the little, everyday lemons that are coughs and colds.

Once, just once, I’d like life to throw me a strawberry, or a pear.

Just once.

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Holland

A few weeks ago I stumbled across this fantastic blog https://alicesears.wordpress.com/ written from the perspective of parents in a very similar situation to ourselves. Through that blog I found this wonderful piece of literature…

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Isn’t it wonderful? I wish I had written it myself. I feel like with Will we are in Holland, we are noticing the tulips and the windmills and we are beginning to see Rembrandts in our future. But with Harriet I am still on the plane. I wanted to go to Italy this time. I don’t want to go back to Holland. I don’t want to get off the plane. There has been a mistake, surely? No-one goes to Holland twice, even if you have noticed it’s not all bad. I am stamping my feet. And shaking my head. I want to go to Italy. Just once. Please.

Please.

It’s been 9 months since we found out that Shaun had skin cancer.

It has been 6 months since we found out that the cancer is gone. He will have regular checks for the next 5 years but, for now at least, the C word is no more.

Those were a tough 14 weeks.

There were 2 operations, 1 big, 1 small.

There were tears. There was stress and drama and shouting and hugging and anger and guilt and love and hate. There was bitterness and resentment and hysteria and compassion and sympathy and pain.

They were a tough 14 weeks.

But we came out the end of it and he is cancer free. He is alive and he is healthy and he can continue to be the wonderful Father to our children that he always has been.

And so, I beg you, again. Check your moles. Go to the doctors. Get a referral. Waste people’s time. Because if you go through what we went through and come out where we came out today then it will all be worth it. But if you ignore the signs or choose not to look for them you might not be so lucky.

So please. Check your skin, your breasts, your balls. Go to the doctors. Don’t wait until it is too late.

I know I’d miss you.

Blood tests and a superhero

Did you read my recent post about going to the doctors?

Well today surpassed all that pride I have felt over recent trips. Today Will had a blood test as part of his genetic testing to try to find out what it is (if anything) that has caused his hearing loss and if it will affect future children of ours.

This is his shirt, and I can tell you that the badge does not do my wee boy justice.

 

We went in and Will was placed on my lap with a cushion on his. The nurses rolled up both his sleeves and chose his left inner elbow to take the blood from. We discussed anaesthetic but because of his eczema the cream would have taken an hour to take effect and I didn’t want to hang around that long, so we went without. Eeeeeeeeeeeeekkkk.

There was a ‘play expert’ with bubbles and a finger puppet kitten to distract him – he was having none of it.

Will watched the needle go in to his little arm, watched the skin around it turn red and fiery and watched the vial fill up with his own blood.

He made not a peep. He had no dummy, no snacks, no distraction, and there wasn’t a tear in sight.

The staff were astounded.

And then, AND THEN, when they had removed the needle and put the plaster over the hole, he offered them his other arm to do the same to that.

 I am pretty sure that gives him super hero status, in his Mummy’s eyes at least.

Doctors

We have been to a lot of doctors recently. We have been sick. Really, really sick. Just your average winter cough, cold, ear infection, flu type sick but it’s been rough. Probably because this foetus takes enough of my energy to make me feel like crap every day anyway, let alone when I’m fighting off germs and bugs and tending to a toddler (who reverted to sleeping like a newborn, i.e. not, for a few nights) with germs and bugs also!

Anyway, as well as that we have had hearing tests and genetic testing, both of which took up a lot of time and a lot of head space. But I won’t bore you with them, what I will tell you about is how is how brave and how wonderful my William is.

At his hearing test he was a complete star. Have I mentioned to you that the hospital we go to is rubbish? Well it is. Rubbish at everything but in particular rubbish at pediatrics, which, when you think about it, is pretty key, what with Will being a kid and all. But he put up with their prodding and poking and taking his hearing aids out and putting his hearing aids in and out and generally taking forever to mess him around.

And then again at his genetic testing he was again, wonderful. Brave and patient which I think you will agree are two massive achievements for an 18 month old. The testing was at Great Ormand Street which is the leading children’s hospital in the country so the care was fantastic but I still think that he excelled himself in how calm he was throughout.

But the real stories came from when we went to the GP.

At the genetic testing the doctor had used a stethoscope to listen to Will’s tummy and chest. A few days later we visited the GP and there was a stethoscope on her desk. While the doctor and I were talking Will had picked up the stethoscope, lifted up his top and started to try to listen to his own tummy. My heart actually bled with how cute he looked and how clever he was for remembering and re-enacting.

And then back to the GP a few days later where she used a otoscope to look in my ears

When she was finished, Will picked up the otoscope, used it to look in both my ears himself and then took out his hearing aids and put it in his own ears! Again, so very, very cute and clever.

Both of these occasions have brought out a mixture of emotions for me. First, as I hope came through above, is pride at how smart Will is turning out to be. He has seen and been the subject of at otoscope enough timers in his short wee life but I still think it’s amazing how he used it to look in my ears and then his own. And the same for the stethoscope. I love how these things don’t upset him, or make him angry. I love how he takes them in his stride and wants to use them on other people as well as himself. And I especially love that we can use the stethoscope to ‘listen’ to the new baby in mummy’s tummy.

But it’s the guilt that breaks me. The guilt that he even knows what to do with either of those medical instruments. The guilt that he thinks that they are part of life. The guilt that they aren’t for most other children. The guilt that my baby has to go to all these different hospitals in the first place.

But for now I will try to focus on the bravery and the cuteness and my wee boy listening to his baby brother or sister inside his Mummy’s tummy. Because those things make me cry in a good way!

The greenest of monsters

Jealousy.

Once upon a time a good friend of mine (she doesn’t look like that) said to me ‘Envy is wanting what someone else has, jealousy is not wanting them to have it’

I have thought a lot about both recently.

I suffer from what is, based on the above, a big old case of envy. Ever since I found out that William was deaf I have looked at all the people around me having children and wondered why they ‘got off’. Why it was my baby that got the duff gene out of nowhere. Why my baby has a harder life than theirs. Why they get to moan about sleepless nights and weaning and laundry while I sit on the floor rocking, wishing that these were the only things I had to worry about. Why do my friends get to fret about their perfectly normal children going to school, making friends and coping with the change when I, already, worry about my child going to school and being able to talk.

But not once, not ever, not for one part of a second, have I ever, ever wished that these people had deaf children. Or that their children had any kind of disability at all. Or that they didn’t have their wonderful, non disabled children.

I am envious that they don’t have to deal with what I have to deal with. But I am not jealous of their ‘normality’. I would not for one second wish this heartache on anyone.

But that doesn’t stop me from wishing it was different sometimes. For me. Not for anyone else.

A few of my favourite things

I have talked a bit before about how I have always wanted to be a Mum and how, because of this I have always made sure to surround myself with children.

But I always knew that having my own children would be different, harder in some ways maybe but better is so many. And I was right.

For me it’s the little things; when I am doing something and I realise that I am the Mum.

Putting on Wills shoes. There is something about having your child on your lap and labouring to get his socks and shoes on before he darts away to something more interesting that really melts my heart.

Hanging out his cute clothes. Not so much doing four loads of laundry a day, you understand, I’m not crazy. But hanging out the tiny socks and trousers and vests. Even now that they aren’t teeny tiny baby clothes, I still find them massively cute.

Having crap in all of my bags (nappies, dummies, bits of food, odd socks). I love finding something random but child related (as long as it’s not sticky), especially if I am not with Will. It’s a lovely reminder that I am a Mum. His Mum.

My house being a tip. Sure, it drives me crazy and exhausts me but there is something that I love about tripping over toys, finding toys in my bed, under my duvet, that every room in the house has a little reminder that a little person lives here. That we are a family.

Recently this happened

And as much as I was annoyed (at myself for leaving Will and pens unattended) and as much as attempting, and failing, to clean it off was frustrating, part of me felt a warm glow inside. Because it’s funny. Because it was going to happen one day. Because it felt like a parental rite of passage. And because it was a reminder that I am a Mum. Not a very attentive one, clearly, but a Mum none the less.

And I love being a Mum.