Needing to escape

I promised myself I wouldn't feel like this but today I can't seem to help it. I want to scream at people for moaning on about the smallest of things or for creating issues about things that really don't matter, that I really don't care about in the grand scheme of things.

There, I said it. It's selfish, it's horrible, but it's how I feel at this very moment in time.

What I wouldn't give to swap our problems right now for some of those things. And I'm not saying that our problems are the worst in the world, I know they're not and believe me I'm very thankful for everything that we do have right now.

Maybe I'm tired, maybe I won't feel so frustrated after a sleep.

But sometimes you just need to escape and stop listening to other people. Not for a long time, but for a little while.

A difficult weekend

It's been quite a tough weekend for L. Her symptoms have been heightened, she's been exhausted and found it really hard to cope with everything.

Everything hurt her - the slightest touch, putting her clothes on - noises irritated or worried her - what's that noise? is her most frequent question, which we hear repeatedly every day - she couldn't bear people looking at her, she couldn't cope with changes or unexpected events, she couldn't bear to take her clothes off once I managed to actually get them on her - despite it being very hot she refused to let me roll her leggings up - Saturday she barely ate, though fortunately today has been slightly better on that front, she didn't manage to walk very far on our trip to the 'princess castle' because she was too tired - fortunately we took our carrier with us so she could ride on my back but getting her into it can be a challenge in itself at times despite her not wanting to walk, she's been wobbly and weak.

And to top it off she fell down the stairs yesterday. Fortunately it wasn't too far and she is fine - a few bumps, but more shock than anything I think (for both of us!). She's a little scared (understandably) of the stairs now and keeps telling me where she got hurt.

So I think a quiet week is in order this week...some quiet play at home with just the family. She saw 2  friends last week and it really took it out of her.

Then back to see the Paediatrician on Friday to see where we go from here.

Time to be more assertive!

When you go to visit a medical professional you're meant to come away feeling better - positive that they'll help you figure out what's going on and how to fix it.

This doesn't seem to be the case lately. I seem to come away from L's appointments feeling frustrated and down, sometimes even judged. Questions, questions, questions and no solutions because nobody wants to make the first move - they're all waiting for someone else to do something first - or because the treatment she needs isn't available where we live. And you think you'll be ok because you've, wisely, taken out the best medical insurance possible for your children just days after they were born and yet they just create more battles and obstacles 'because of her age'.

And so we're left chasing from one health professional to another (because the multidisciplinary team they say she requires doesn't exist where we live OR in the neighbouring county), relaying what he said, she said because communication appears not to be their strong point, listening to numerous different opinions and often left feeling even more confused than when I arrived. And all I want is for all of the medical professionals involved to be on the same page, telling me the same things, giving me the same advice. How am I suppose to know who's right and who isn't? If I had the answers then we wouldn't need to be seeing them.

It's tiring and it's frustrating and it feels like nothing is ever simple right now.

And I think it's time for me to be more assertive, to speak my mind whilst we're in appointments - not to come home regretting the things I didn't say.

L can't speak up for herself, she's 3. As her mum it's my job to look after her and make sure she gets the best possible care and get the help she needs and deserves.

Exhausted

Another day, another appointment...and feeling absolutely exhausted.

I need to write but right now I need sleep more.

Good night.

Weigh-in

We were back at the dietician with L last week but couldn't get an accurate weight as she didn't want to get on the scales - she was on day 4 of no poo and when that happens she's in no mood to do much of anything. The dietician is 'very concerned' about her and has asked the health visitor to weigh her every 2 weeks to keep a close eye on her weight.

So I took her in this morning and after a little gentle persuasion she stood on the scales and is 11kg. This isn't good news as it means she's now right off the bottom of the growth charts.

The dietician is still talking about nasogastric tube feeding but our Paediatrician has only just come back from holiday so we're still waiting to hear his opinion.

I feel like I can't win - on one hand I'm so desperate to avoid the NG tube as I'm so afraid of it distressing her but on the other hand she is effectively starving. It's so difficult to know what's for the best. I worry that the tube would discourage her further from eating orally but the dietician has said that sometimes it can actually kick start appetite. I guess it would take off the pressure and stress and maybe that in turn would encourage her more? There are so many unanswered questions, some that can't even be answered unless it does happen.

I keep hoping that one day things will miraculously get better. But this has been our lives since she was born, so I guess that's unlikely. And she's perfect just the way she is BUT I do wish she was healthy.

One huge step forward

Sometimes something comes out of nowhere and makes you think wow.

My little girl did this yesterday.

Since last September we've had a lot of problems with her separation anxiety and getting her to playgroup. Coupled with her bowel problems and eating issues it was decided with our paediatrician to take her out just before Christmas 2012. It had gotten so bad that she didn't even want to leave the house to go for a walk, so afraid that I was going to take her there. It broke my heart seeing her like this and we tried everything. I just wanted to see her happy and enjoying herself, wanting to go. And I know a lot of children to through 'phases' and don't want to go to nursery/playgroup/school etc but in my heart I knew it was more than just a phase.

But of course as her 5th birthday fast approaches in about 18 months time and the legal requirement for her to be in full time education I've been worrying about this more and more lately. Here is Wales children to go to school (what I think is) ridiculously early - from the term before their 4th birthday - so technically L would be going this September! I think I've known in my heart for a long time that neither would she be ready or would I want to send her that early - as long as she goes by the age of 5  as is required by law. I don't believe in pushing children - besides, they're only young for such a short amount of time. But I did want her to be settled at playgroup first and slowly build up to 5 full days a week so that it won't be a big shock when the time comes.

And then the paediatrician decided he wanted to do an ASD assessment for which she needs to be observed in a nursery/playgroup setting. So I had a meeting with the lady who runs our local playgroup and she was so understanding and I know they'll be gentle with L and look after her and not push her with her 'issues'. We agreed that I would bring L in for just half an hour and stay with her and when this went well we decided to do it again. This we did, yesterday, and I could never have imagined it would go so well!

In the few days leading up to Friday L's bowels were playing up again, she didn't go for 4 days and this, of course as it always does, made her eat even less, become exhausted and extremely tepremntal. Fortunately she managed to go the night before - otherwise she probably couldn't have gone in or indeed have wanted to.

Again, she was a bit dubious walking there (and she almost lost it when she realised she'd left Minnie Mouse at home!) and I had to carry her in and give her lots of reassurance. She stayed close to me  and wanted mummy to play with the toys with her but I tried to gently encourage her to play with things as I watched on and go to get toys herself. As the session progressed she got a little braver and played alongside the other children. She even joined in at snack time (albeit just a couple of crisps and a cracker), which is great for her and got so excited when they went outside! Time was getting on and I needed to get home to feed C, but didn't want to discourage her whilst she was doing so well. So I took the opportunity and asked her if she'd like to stay on her own for 30 minutes and told her I'd be back to pick her up afterwards. And...SHE DID IT!

I cannot express how PROUD of her I am. Only those close to us will understand what a huge thing this is for us...what amazing progress this is! I still feel all warm inside when I think of how well she coped and for the first time in a long time I said to my husband...I think she'll be ok with this.

I know there'll be set backs and we're by no means over this hurdle yet but one step at a time and this was so unexpected and it was just so amazing to see her happy and to hear her speak fondly of her morning there, instead of freezing up with fear and anxiety. The more I look back the more I wonder just how much of the anxiety was caused by her bowel problems being so bad last year? Of course you don't want to go away from home when you feel poorly - you just want your mummy! But nurses and doctors just kept pushing and then there was that awful health visitor who told us she was playing us. Thankfully I know my daughter better than any of them and didn't let her persuade me with such utter rubbish. But that's not to say that it didn't shake me or make me question myself.

Of course I know there is a long way to go yet - when we got home she let go and was so exhausted. She slept for 2 hours this afternoon and has been so tired she's barely eaten since yesterday lunchtime, not to mention having one of her biggest meltdowns to date. All these things need to be figured out - first and foremost her calorie intake but...

SHE DID IT!

Tough times

I haven't posted for a while...life has been hectic.

When I started this blog things were difficult. Now they're even more difficult.

Just when you feel like things are so incredibly hard, life goes and brings a whole new meaning to the word 'problems'.

Thank you for that.

But we fight and we keep fighting because we have reason to - our two beautiful little people. They are our reasons to get up each morning, our reasons to never give up and say to hell with this, our reasons to keep fighting and to stay strong.

They are our sunshines and no matter what my husband and I are facing right now we will always have two very special reasons to smile no matter how difficult things get.

Feeling sad

I'm feeling a bit sad these last few days.

Here in the UK we've been having somewhat of a heat wave the last few days - temperatures are creeping towards 30 degrees C and it's great for little ones to spend time in the sun doing lots of outdoor activities. However, poor L has been really struggling...I don't know whether it's the heat or just the 'bad times' sweeping in but she's either too tired or in too much pain to be outside long.

It's just not fair. She should be outside all day from dawn till when she goes to bed, she should be excited to play outside more than usual, she should be fighting me when I say it's time to come in. And yet I find myself asking her if she's sure she wants to go in and doesn't she want to stay out just a bit longer? And instead she's upstairs in her dark room sleeping or lying on the settee trying to stay awake or with her tummy hurting.

Yes, she's had fun in the paddling pool and playing in the sandpit, collecting flowers and treasures in the garden, doing some outdoor painting etc...but it's the odd half hour here and there, which just exhausts her further.

I just want her to be able to enjoy her childhood full stop. Not for the happy times to be scattered between abnormal naps or being in pain.

I just want answers. I just want to make her better.

Fighting the fight

Today I sat and watched my one year old happily feed himself all of his lunch, try new foods and enjoy it.

This is how it's meant to be and I can see that now.

Now we have a second child I can see all the things that L should have done but wouldn't or couldn't. And although you shouldn't compare too much the differences are sometimes quite alarming. And it actually reassures me in my fears I talked about the other day - that it isn't something we've inadvertently done.

But it's hard to think about and makes me feel sad. When you're a mum you want to make everything perfect for your children, to make them happy all day, everyday, for them to be healthy and happy and to enjoy life. But sometimes things are out of our control - we can't stop them falling over or getting upset when another child steals their toys. And we can't control their health. But we can be there for them and fight for them, be their voice and get them the help they deserve.

And it shouldn't be a fight - they should get the help they need as soon as they need it. But sadly, all too often you do have to fight.

And that's how it feels right now - fighting insurance companies to pay for treatment, fighting doctors to fill in forms properly and send letters when they say they will, fighting people to listen and to understand.

And it's tiring, so tiring. And everything else gets pushed aside - housework, friends, paperwork and paying bills. But nothing else matters. All that matters is getting your little one better so they can enjoy life and do normal childhood things.

And so I take a deep breath and hope that when I wake up tomorrow I am  ready to battle on.

The pain of having no answers

We've been for an hour to soft play and now my little lady is fast asleep resting her head against me.

Is that normal? Should she be so tired after a short trip out?

Sometimes I think it's definitely not normal but other times I wonder if I'm expecting too much? But then I remember that where we live children can go to school the term before their fourth birthday - meaning L could technically go in September (but won't be) - so they must expect them to be able to cope with 5 full days at school.

In my heart I know it's not normal, that she should be able to cope with more. But then it's not surprising she gets so tired on the little she eats. And not surprising that life often becomes too much for her to cope with - we all know as adults that it's impossible to function normally on an empty stomach. If you don't take in enough fuel then you can't expect your body to keep running on empty, it's as simple as that.

But you do question and you do wonder and you start to doubt yourself. Especially when you're in a 'better spell'. Am I imagining this? Is this really happening? Am I just overreacting? You even start questioning your parenting - have I done something wrong to make this happen? Are we that bad at this parenting stuff that our gentle parenting approaches are causing problems?

And it's tough when you start questioning your whole belief system and doubting who YOU are as a person, but you're desperate, desperate for answers and hope and for things to change and get better so you'll explore anything in case it might just fix things.

And then the good times end and the bad ones sweep in and then the guilt starts. Guilt that you ever doubted the reality of this, guilt that you expected more, guilt that sometimes you feel angry inside wondering if she's just 'being naughty'. And anger - that you doubted yourself and your husband or that other people made you feel like you're making it all up.

But it's good to have others to ground you - people around you that can see the difference too and can reassure you that you're not going crazy!

Because sometimes having no answers makes you feel that way.