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She ain’t heavy, she’s my Lauren 💜

The thought of something is more often in my experience way worse than the actual thing. Unless that thing is tasting mushrooms onions or tomatoes 😄

We convince our minds that something is so hard it’s too much and bigger than it actually is. If we changed our mindset then I assure you that you’d try more things (not necessarily foods!) and accomplish far more than you think is possible.

When I look back on our life with Lauren so far I think of how low I have felt at times and how much I have missed out on because of it. I’m not saying there’s not good reason. I can reason away most things with how difficult things are, and sometimes I just can’t/couldn’t do some of the things I’ve shy-ed away from.

Looking back though I can totally see how I’ve let fear consume my thoughts and create a mindset of ‘I can’t’, and it has stopped me enjoying life. Jonnie has pushed me through many of barriers that I wouldn’t have attempted without him. I’m grateful for that. Yet I’ve still not lived how I should.

I was so annoyed when I saw the weather forecast for our recent holiday to Arran. I immediately went to that place of how we’d be stuck inside, and it’s not the most wheelchair friendly place as it is. The kids wouldn’t like it and they’d drive me more insane than normal. I can’t tell you how badly I’d let myself talk me into the mindset of I’m not going to get to relax or enjoy it at all, I wish I wasn’t going. Selfish miserable trout!!!

Soooo negative. I’ve become a lot like that lately.

Jonnie and I talked quite a lot whilst there on different topics and enjoying the small simple things was one of those topics. Isn’t that what life’s about?

It’s about my family. So how do we enjoy it even though it’s rainy windy and wet mostly? Well, I’ve discovered lately, we just DO!

So I forced myself to play in the garden, actually play. And I’ve loved it. I forced myself to make Lauren engage and spend some time with me and just me. It’s hard but I loved it. I decided even in the rain that we would go out walking. Lauren cried and threw a tantrum. Jonnie hiked her over his shoulder until she shut up. We all loved it. We loved spending time outside, in our waterproofs getting wet and walking, laughing, sightseeing, singing together.

So what about when it’s not wheelchair friendly? And Lauren can’t walk too far. We Flippin pick her up and carry her. She won’t miss out if it’s within our power to get her there and back. She isn’t too light but it’s doable. She doesn’t hold on. She drives me mad pulling my hair whilst I do it, but we carry her. Piggy back, shoulder ride, fireman’s lift. The thought of doing those things with a nearly 11yr old is exhausting right? But in the moment- I tell myself I want her to see those things and Jonnie wants her to be involved, we want pictures for her to remember things by.

She has super-humans as parents (not really but it makes me feel better thinking of myself as such) that go beyond the normal realm of duty so that she gets the most out of life. Wyatt also benefits from this. And I’m going to stop saying no to things- we will be doing things more and more no matter how hard they seem- it’s all about these 2 beautiful babies that we brought into this world to experience it in its fullest.

Life is hard. We are ALL asked to do hard things, but with a little change in your attitude and a little more positive thinking – you get the blessings that come from serving and blessing another’s life. I would do anything for Lauren. I would also do anything for Wyatt. As long as I think it will benefit their lives for the better.

She ain’t heavy, she’s my Lauren 💜💜

Mummy Birch 😘💛💛

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A little bit of a lighter post..

Holidays!!

It’s so much more hard work going than it is staying at home hahaha!!

Is that the same for everyone? And perhaps just worse for those of us who needs a freakin’ meds suitcase 😂😂 seriously- mammoth task!

Things you cannot forget when taking Lauren on holiday- oh and now Wyatt

Meds’ And all that that encompasses: creon, fluclox, vitamins a, a&d, e, d, k, iron, zinc, ursodeoxycholic acid, co trimox, laxatives, nebuliser 😰 Wyatt’s salt, vitamins e and abidec, lactulose and shrynges for all meds!

Physio vest

NAPPIES 😳😂

A gazillion wipes

The toilet rim to help her sit is the next best thing to her toilet system and foot stool

Magazines galore- to bribe her to shut up and behave (chocolate lost its effect!)

Those Flippin ribbons

Her barriers on her bed, her pillow

Her bath toys and bath jug

Her bath cloth

Extra sheets and quilt so we can round Robbin as we wash them 8/10 days

Her dvds

Her board games

Her tab – OH WAIT…… 😠

Her iPad

Her beads

Her pens and books

At this point of writing I’m wishing I pulled a sicky and stayed home haha!!!

Then there’s her foods that we can’t forget in case we can’t get them there- that’s quite a list.

Wyatt’s not quite so complicated thankfully but needs foods in case he’s not quite up to the chewing of our food.

I once went away by myself and when I was on my way I had totally forgotten my case and bag and got so excited that I didn’t need all their crap that I forgot the few tiny bits I needed for myself haha

I just went and bought clothes and totally winged it, felt quite exhilarating to be honest.

Travelling with little people is not for the faint of heart and should be banned for all.

No holiday feels like a holiday at all when you have kids. It is for them and it is what it’s about but it is hard work…. worth it for the adventures for the kids 🥴😄

Reluctant travelling mum of two ✌️

Just lately I have been dealing with some demon feelings, feelings I’m all too familiar with. Worried and fear and ‘why us’. You know something? It’s ok to feel all the stuff that comes your way. I don’t know if there will be a time when I can rest knowing that whatever comes my way will be ok because my brain goes straight into how on earth can I fix it. I do have to work on my faith and knowledge that I’m really not in charge of much. But the bit I am in control of, I like to try and control to perfection. It actually sends me insane trying to do that but my muscle memory if you will, takes me straight there.

I will never be past the feelings of how I wish so bad it was different for my children. I will never wake up thinking that this is ok. It will never be ok. I’m not ever going to stop grieving for a life without cf. I will never wake up thinking that this was the best thing that could have happened. Because they are my children. I will never have a day when I’m not worried sick. I never do have a day when I am not scared for their futures. And I don’t want to because I want to always love them like this.

What I do want is to do is train myself to channel my anger, at their misfortune, to somewhere more positive of doing and learning and conquering our challenges. I want to train myself that when all is said and done, I leave the rest up to my Father in Heaven because I need to train myself that I’m not in control of very much. That in itself is just terrifying.

Lauren has some issues lately, some of which cross over, some separate from cf. It’s hard graft. It’s a scary unknown journey and we’re just trying to survive day to day most of the time.

The choice to have a peg feed is because she lost 1.1kg in the last 8 weeks. She’s not even on the weight centile chart now. We gave her 2 years to prove she could do it herself but she can’t. So I will have no regrets. But I will be sad. I will cry and I will wish it could be different.

Her cough hasn’t gone. We’re giving her medicine that we don’t know works. We’re hoping it does.

Her infection hasn’t gone and we’re gambling that she needs a break from meds. We’re hanging on by a thread that this is the best action right now and we need to let her get strong to see if she can fight it.

Her iron stores are so low they’re practically none existent, she’s on horrid but oh so necessary iron to get them back up. Her laxatives will increase no doubt. We’ll have more accidents and she’ll feel worse during the course of those accidents. I will need to change more nappies. She will fight on each one.

This is her life- complicated and full of challenges. And I’m ok being sad about those things.

The great thing about being in a family is that you’re not alone, all the time, in those feelings. Jonnie feels those things too. Quietly most of the time, but he feels them. And he walks by my side daily as we do what we do and get on with it. We try to live and give our children the best experiences available. It is hard work. Exhausting in fact. But when Lauren brightens someone’s day by waving at them, or showing them her coloured ribbons, I remember that life is so simple to her, love and be loved.

I know that physically life is hard for her- but her need to interact and love others is so much more than wallowing or self pity. Puts me to shame most days. She is a sunshine that this world needs. And she thrives off the smiles and interaction that she gets back. I’ve forgotten that for a while but over the last few weeks I’ve noticed more and more that she’s still as beautiful as ever. Probably even more so considering she should just want to be in bed all the time!! And in no way will it ever define her how people treat her back- it will only ever define them.

It’s hard work spending time with her a lot of the time but when people do- their lives are blessed.

Im not sure life will ever be easy. I probably am- it won’t be easy will it. As long as both my children are here for a very long time, that’s ok with me. I’ll live it, sometimes be angry with it, but be grateful I have them. So very very grateful.

💚💜💛💙

April

When your day just keeps getting worse

I know that parents out there all have struggles. It’s no easy task parenting other humans when you barely feel like you’ve got your own 💩 together. Today though, I feel like I reached a whole new level of mean. I lost my mind.

We’ve been having more than a few issues lately with Lauren and her health. It’s been tough and continues to be and my worry and anxiety over that some days feels all encompassing. Some days it feels like someone is trying to choke the hope out of me. Some times it works. Mostly I get my act together and get on with it over the top of all that.

Lately though I’ve totally and utterly felt useless as a mum. The truth is she prefers everyone else to me any day of the week and it breaks me some days.

I no longer have any one to one time with her. She ALWAYS wants Jonnie at the weekend.

I tell you my sad tale because it leads up to an eruption of bottled emotions. Lauren has stopped listening to us, unless I’m shouting or going crazy. No amount of asking nicely does it at all. If she wants to pull Wyatt’s hair- she will ignore me ten times then do it and then look at me like ‘what?’. Same for leaving his toys alone whilst he’s trying to play (she will not share a single one of hers with him), same for cuddling -please read choking for cuddling- I kid you not! She’s brutal. Same exact fight EVERY SINGLE FOOD AND MEAL TIME. We seem to get on track with food and then every time she’s in hospital something happens and it’s a horrid dreaded battle every day. We’ve decided to stop fighting and get her a peg feed. I’m so done.

Today was a fight at everything, so much so that she had time out before breakfast, before lunch, and I turned in to mean mum. She wasn’t allowed to do anything. Every time she tried I made her sit still next to me and tell her that she wasn’t allowed because she hurts Wyatt/won’t eat/pulls hair/ignores mummy etc etc. She had a rubbish day.

Then I read a story on Instagram and someone reminded me that I have fought for these days, to have her here with me the good bad and ugly and would choose this over a day without Lauren every single time. This made me ball like a baby because Lauren missed out on enjoyment today because I clearly don’t have anything together and need to grow up. It’s not about winning. I need some new strategy’s. I’m working on it!! In the mean time I’m crying because sometimes I just suck!!

Today is one of those days.

Tomorrow is a new day. Thank goodness for that!!!!!

Luckily she had cousin company so I’m not all mean 🤷🏻‍♀️

From one psycho mum xx

Birch Life

Life continues to be full of ups and downs. I’m learning to really try and have some good in each day on purpose! To be grateful and to keep trying to sort through the mess in my head. As I do that I see that the fog lifts eventually. I’m not sure my worry for my children will ever go away- after all I am a parent!

Wyatt is doing so well where cf is concerned. I feel so blessed. His bowels are the part that is affected most, currently. But his chest and overall health is in such good form. I’m so grateful. I put it down to having the holistic approach and doing things right from the start with him alongside his great cf team that we love.

Lauren will hopefully have her procedure done on Wednesday (3rd July) after the last one being cancelled. Her bowels and lungs have had issues for a while so if she gets the all clear this time which we’re positive she will, she can get off some antibiotics that I think are affecting her whole body bless her heart. She is loving being at school and is settled with the staff and pupils there. We’ve had some glitches but they do a good job with her and she now gets to go swimming each week too.

I thought it would be the worst thing in the entire world having two cf kids together. The fear that I felt whilst pregnant was real and I lost so much sleep over it. It went round and round my head and I can honestly tell you that I wish I would have just chilled out. There is definitely panic sometimes. We’re concerned and we do lots of little things to minimise cross infection but the truth is- we can’t stop it if it’s going to happen. I have little control over it. But I honestly feel so blessed and know they are being watched over.

I like control and so I’ve had to learn that sometimes things are just out of our hands. There is nothing we can do about them. We can either let these things affect us and usually these things make me so sad, but nothing good comes from them. Or we can try to embrace life as it is and have acceptance and patience with them. I don’t think human nature is very good at letting go of control.

My problem is that I think all these problems are mine, mine to have, to hold, to never let go, to let fester, to try and control, to never share with anyone. I literally end up so miserable. In the last few months I’ve tried so much to process some of the things in my life and decide that they just are what they are.

I nearly made some big life decisions during this particular time of complete chaos. I thought I knew what was next. But in actual fact, making such decisions when you’re surrounded by sadness and heartache is literally the WORST thing you can do.

Life is always going to be complicated- you are no different than I am, your problems are just different. We all have them and we all deal with them However we can. But for me I’m glad I said out loud how I was feeling but didn’t consciously change anything. I didn’t draw any firm lines in the sand.

Our lives are so full of ups and downs, they always will be and I suppose I’m learning that that in and of itself can be a beautiful thing- but mostly it’s hectic and chaotic and hard. It’s a challenge. But amongst it I’m learning to see the good.

These two munchkins mainly

Oh my goodness how I love them!!!

A. Xx

Yellow, Blue and then Green….

I listened to a little speech recently by an incredible woman Jill Thomas who lives with the loss of a child. My heart seriously breaks when I see a little bit of people’s journey where this has happened. Whilst talking she explains something that she came to find and understand and realise along her path. I probably don’t do it justice!(apologies) This is what I gained from it.

I can’t explain it the way she does but I resonated so much.

When we live in our happy- not yet knowing loss/trauma/difficulties/tragedy state etc we live in a ‘blue’ coloured world. Everything is blue, it’s pleasant, it’s happy, it’s normal and comfortable and we like it.

When those things come into our lives we’re thrown into a world of yellow. It is hard, it’s totally and completely different, it’s painful, it’s sad, it’s depressing and we don’t want to be there.

So we try to get back to blue. But when we get there it’s not what it used to be, so we think we’re stuck in yellow and it’s scary and we can end up in conflict inside ourselves.

Her point at the end of this beautiful talk/speech is that there is actually now a whole new colour. It’s green. It is sad sometimes, it is happy sometimes. It’s hard, it’s heartbreakingly painful, it’s also so beautiful and has some happy things there and it’s all together. Mixed into this beautiful new colour green.

Conflict within our hearts is so hard to deal with. I’ve ended up thinking I’m crazy because I care about people who have hurt me. I’m sad. But I also love.

I find myself so immersed in love with my beautiful family and a husband I would choose every single time, yet so sad and broken that we deal with what we do. I do not know some days how I’m going to feel, but I’m a complicated mixture of all my life’s challenges and all my joy and so I will feel all those things. I will allow myself to without judging myself.

I think I’ve felt for so long that I need to conquer my life’s challenges. And I mean- what does that even mean!?! I have no Flippin idea haha! What a waste of brain and heart.

I have to learn to LIVE my life’s challenges. I have to learn to live in each day. Not love each day because I don’t. But live. Experience what is in front of me and let myself freely feel whatever it is I need to feel from both different sides of the green.

I needed to hear that woman speak because I have felt stuck in sadness wanting some sort of normality in life. I’m not getting it- at least not often. THAT’S OK!! I don’t think I need it. I just need here- now- and to soak up my life.

I have so much love in my life. I have so much sadness. I have so much light to give. And I definitely have a listening ear for when things are tough. It’s just ok- right here and right now to live in this kind of conflicted state and to feel it all the way.

I feel like this way of looking at life has started to open up some possibilities for me. It’s crazy how our thoughts can govern us so much without us actively choosing.

Be kind to yourself, and find someone to talk to if you need it 💛 but start living in all of your good bad and ok times.

April xxxx

Holidays are tough times!

I don’t know how parents with two or more kids do it. There aren’t enough hands! But two kids when one has special needs/disabilities is hard. I know- I chose it. It’s my fault right!

In the holidays I found it hard just generally with Lauren but I could always just take her to cliffe castle or for a walk and get out a little bit.

Today when I had to say to her ‘Lauren, mummy and Lauren aren’t going out today because I can’t take you and Wyatt’. She burst in to tears. And then so did I. I feel like a total failure. I don’t regret Wyatt but I wish I’d have known how hard it would be on Lauren and perhaps hired a nanny first before having him. It’s difficult in the holidays most because home is boring. She doesn’t get invited places for anything really. We’re lucky that she gets one day a week with her PA to do stuff and we had a friend visit yesterday with her gorgeous girl. But like a typical kid, there aren’t sleep over invites and never have been. Not many birthday invites if any. It’s a different world and there are few and very far between people who see that, even if not understanding it, that know it’ll be hard but want to help in some way.

Holidays suck around here unless Jonnie is off work. I’m pretty sure until Wyatt is older and capable of walking a lot they will continue to suck.

The realities for families with disabilities in are that they are for the majority of the time on their own, because it’s hard to help. Imagine what it’s like for them (us). It’s lonely and it doesn’t ever stop being. Our cross to bare. But it definitely helps you whittle down the friendship circle to ones we know love us enough to get stuck in.

I have gorgeous kids, and we are happy mostly. Making the most of what we’ve got.

Just maybe take a look around and help someone. That would make us smile- knowing Lauren continues to inspire others x