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Some decisions in life are super easy right? We want something, we get it, or do it, and there’s often no second thought to how that will map your life out for the rest of it, or the next day, or over a short period of time. Other decisions weigh on your mind like NO OTHER. We have had that kind of decision and choice to make since having Lauren.

So without further adieu…. this is what Lauren has to say

Yes, you read that correctly. Baby Birch No 2 is coming Sept 2018. How do I feel about it? Here’s some questions and answers that you might be curious about..

Was this by accident? ERM….NO!! I don’t make life altering decisions by accident. Ever. This was very much planned. And wanted. And then I got sick and well… it was too late by then hahah!!

Will it have Cystic Fibrosis? We don’t actually know and won’t until after it’s born. There’s 25% chance it will, 50% chance it will just be a carrier of the faulty gene like Jonnie and I, and 25% it will be clear of the faulty gene completely. So 75% chance no CF. That’s pretty good odds. We all know the former can happen though as it did with our precious Lauren.

Are we worried it will have CF? It’s kind of a mute question; I worry about EVERYTHING to do with Lauren. This will be no different and no one understands the implications more than Jonnie and I. Trust us-we don’t go into this lightly.

When and why did we make the decision? Last year I was due to be steralised. Booked in and everything. The very day of my op Jonnie didn’t feel good about it enough that we fell out. Since this wasn’t just my decision, we cancelled the op and we began talking about why. I still had no intention at all of having more children but the decision to stop that ever happening had to be joint or what’s the point of our partnership. I’m not maternal. I don’t love babies (other people’s). I have to really love the parents like family, to actually be interested. And I do love some precious little ones that aren’t my own-genuinely. But the new baby passing me in the shops etc-I don’t even look. Honestly I don’t. I’ve no interest. With Lauren it was 100% different and I hope the same of the new baby. But this was a huge decision and not one that I would have made without the influence of my Heavenly Father who through gentle promptings and comfort that it will be OK, let me know this was the right decision. It took a decade to make this decision. A DECADE.

So-what if it does have CF? I’ll be totally clear on this matter- It may well have CF. There are no better 2 parents in the world to care for, be advocates for, love and push and protect a child with this condition than my husband and partner Jonathan, and I. We are pretty awesome

If you find yourself judging because of some small unkind thoughts enter your head ‘I think they’re crazy’, ‘that’s not fair on Lauren’, ‘they’ll be dangerous to each other’, ‘what kind of life will that be’; just unfriend me right now. I judge myself on all those negative thoughts that pop in my head from time to time. I certainly don’t need you to. If it has CF then we are experts. Lauren will be protected just like she is now. So will the new member of the family. Lauren will LOVE being a sister and finally having someone to love her just for her instead of being bored of her company, leaving her out, never inviting her anywhere etc etc SHE will have someone to be there, love and play with and protect in her own way. Her best friend 🙂 There is no better gift to her than this new child. You have no idea.

Would we abort? HELL NO! It’s not something I believe in at all. There are a few instances I understand it, but this is not something WE would EVER consider. Look at how Lauren has impacted lives around her? Imagine if we’d been pressured to abort her and we didn’t think or know any differently?! The thought is inconceivable. Just no. All in or all out. That’s how we feel about this, no backsies if it doesn’t go right!

How did Lauren react? When we sat on the bed and told her, we asked her where the baby was and she pointed straight to my tummy. She knows. She knew before we told her. She already loves it and keeps smiling and pointing to my belly. She’s going to love this child quite possibly more than anyone else. That’s just who she is. She emulates what love is and just keeps on spreading it everywhere she goes.

Who wouldn’t want another one of these…

How’s the pregnancy? Marginally better than when I had Lauren but I have vomitted a LOT!!!! haha!! I flippin hate being pregnant. I’m figuring out what food taste just as good on the way up as they did on the way down….ewww??? Yeah-that’s my life right now!! I’ll hate Losing my figure and getting fatty bits and cellulite like never before. I can’t wait for it to be over already and I’m only 11 weeks in hahaha!! I can’t eat anything I like and keep it down. My skin is awful. My back kills. What a magical time (que-VOMIT!).

It’s the right time. Lauren will be starting school finally-soon. In other news funding has been approved and this should happen within weeks now!!

I have no responsibilities that can’t be done with a little one in tow. Doterra business is good and will continue to be. There was no better time-even when we had Lauren! Although I wish I was slightly younger as 36 feels far too old for ME to be having a baby. I should probably get better at making decisions quickly!!

It’s scary-I’ve not had a lot of time to be excited because of all the worry and all of the sickness so it’s still a bit surreal. I’ve literally thought about all the bad things so much-I just need to focus on the actual pregnancy and trying to be well. I can’t control what happens later on. We’ll deal with it when the time comes. Whatever way the genes fall, we’ll be OK. I don’t know if you’ve noticed but Jonnie and I make a pretty formidable team! It will be no different if new challenges come our way with this. There may be heart ache-but we just get on with things and we’ll be OK. And there’s a huge chance that we will have a healthy baby with no issues. For now- We’re happy about this and hope our friends and family can be happy with us (or remove themselves!) because this is happening now with no going back!

WHEN?? Due Sept 18th 2018. Gulp!

I had a scan for something else this past week and the sonographer let me see the baby and the heart beating and gave me a picture. There’s a little Birch inside me!!! I felt quite excited!

The birch3- soon to be Birch4 xxxx

We have had such a battle -AGAIN- to get Lauren in the school we chose. The system is utterly flawed and I can’t believe both mainstream and special schools get away with treating a child with special needs the way they have.

We chose to pull her out from Laycock- the head teacher used Lauren’s wellbeing as a pawn in her sick game. She’s nasty to the core and I hope I get to see karma catch up with her. We were asked to keep the complaint going against her to the offsted but TWO PANELS of supposedly impartial people thought it was ok to let her get away with discrimination. We had (have) evidence in black and white yet they chose to ignore it. Disgraceful. Utterly disgraceful. We were exhausted.

This meant that my child was better out of an environment where her health condition was targeted, she was isolated more and more and she became angry at having to go to school. That said everything so we searched for a special school. We searched Bradford, Leeds, Wetherby, Halifax and then looked at North Yorkshire.

The school had to be free of Kids with CF, for us this was key because of the infections Lauren is fighting and because we wanted a safe environment. There are a select few individuals with infections that don’t have CF but the infections are serious to a CF child and are airborne. This complicated things. We wanted a small school where possible and we were willing to move completely for it. We loved Leeds and Wetherby schools and wish she could have gone. The only school however, that fit the bill was a North Yorkshire school.

They met Lauren and led Bradford education SEN team to believe they just needed to tick boxes and it would be a September 2017 start. They then called ME not the education team (a definite attempt at manipulation for absolute certainty) to tell us they wouldn’t be taking her. I now hate them. But this is the only safe place for her- for now.

So thankfully our team agreed that their reasons were ridiculous and unlawful and they started the appeal process for us. And we’ve done very little.

The tribunal date was set for 23rd Feb but we were told mid January the courts have upheld our appeal and so she WILL be starting at this new school soon enough once everything is in place.

What a complete waste of time and resources and to be honest this has been detrimental to Lauren’s confidence. It is such a twisted affair when after 1 meeting a school can screw around with a child- and therefore families’ – wellbeing and home life.

It has been some of the toughest days weeks and months of my life. But luckily lauren and I still get along. I had to quit work. Her health was the first reason- but I couldn’t look for anything to fill the time when it was all taken up with Lauren. I’m so lucky that my Doterra business was usually weekends and evening classes that I could use to occupy my brain!! So lucky!!

So- she is starting soon enough. No date yet. But it’s happening.

I have zero confidence in them. So all the time she is there I will be keeping my ears open and looking out for where we could go, should they not do their jobs properly.

And I won’t quit complaining until something serious is done- should we end up in the same situation as Laycock. If it wasn’t too late I would do more about that school too.

Seriously flawed process but high praises for Bradford education who have helped us beyond what we could have hoped for. And a social worker who has been a sounding board to all my frustrations. I couldn’t thank them enough!!

Here’s to the next chapter 🙌🏻😀💜

I read this quote on instagram recently, quoted by an amazing woman who I follow- Kim White (@kimcankickit). In awe I follow her life’s story battling a rare form of cancer. I don’t know her but some of the things she’s written completely move me to tears. This post in particular, Celebrating even the dark days and she wrote about some very dark days.

As I reflect upon this time of year and how life changed so rapidly for us 9 years ago, Burping Lauren on Boxing day 9 years ago led to her throwing up bile. That led to a hospital visit. They first made me leave her to try and get a canula in a 4day old baby. I could hear her down the corridor and sat alone in a room crying my heart out as Jonathan went and called mum and his parents. What the heck just happened to our happiness? We were told shortly afterwards that they were blue lighting her to Leeds for a possible bowel obstruction, and as we said goodbye a nurse rather patronizingly tole me ‘don’t worry you’re going to see her again’. My life had changed completely in a moment and she didn’t understand! My response to her wouln’t be silence if I had this same situation happen again! I would see her again, but right in that moment my newborn was being taken from me and I couldn’t wrap my head round it. She was then operated on the next day. Life was turned upside down.

The surgeon was the first person to mention Cystic Fibrosis. It made no sense. I remember walking down a corridor for some food after Mr Powiss had said what she had was linked to CF, I said to Jonnie “That’s a lung disease that kills people in their teens, she can’t have that, it doesn’t make sense”. Two days later we met Dr Brownlee. He told us more and suddenly my heart sank. I knew that that’s what she had and my world flipped upside down.

I’ve written about some of this before, I’ve written about her brain abnormalities and what came in the next few months.

Ordinary moments, conversations, words; it all has the ability to change everything. We don’t know it’s coming. I certainly didn’t know how to handle it. But as I look back 9 years on I think about how grateful I am how quickly things were found. There is a plan to all of this, life isn’t just meaningless, there’s purpose.

As I reflect on what a truly hard year in 2017 our little family has had I think of gratitude. I read somewhere that having a grateful disposition can change your heart, and you become happier and more positive. I’ve tried to practise this through the hard times this year. I’m so grateful for Lauren teaching me what real resilience is. She can always find a happy moment in and amongst the hard. I’m grateful to have Jonnie. I’m grateful for sisters who I love, I’m grateful to my mum for being respite with Lauren for us. I’m greatful for inlaws who help as well.  I am so grateful to my friends, some of who are as close as my family. I’m grateful to you guys- those of you who love Lauren, Jonnie and I. The messages of love, concern, the prayers and those of you who fast with us. Those of you who don’t believe in those things but wish us nothing but good. It means so very much to us. We are isolated sometimes and life can be lonely. Our community online has grown and I’m grateful to share our story with you too.

Moments of 2017 have brought me to my knees in prayer, begging for it to be easier. It’s possibly never going to be, because loving someone so much means it hurts so much when they’re sick. Opposition in all things. Some of those days felt very normal back in March in hospital and then other days I felt a complete shift with myself and some serious soul searching took place. We’ve had some great times together this year too..

Our hope is that through some ordinary moments in our 3 very ordinary lives (OK 2- Lauren is very very extraordinary!) that 2018 will have a healthier Lauren, a new school for Lauren, hopefully a new home for us and some great things where work is concerned. I’m not so sure we’re out of the woods. I do know that we’ll continue to fight the only way we know how- lots of hard work, faith and prayers and enjoying life as much as we possibly can.

I wish you all some very special moments in 2018. I hope you have a very healthy, happy and beautiful year with wishes of yours coming true. Start it with gratitude and keep searching for the beautiful things even during hard times! They are definitely there!

Happy New year Everyone,

Love April, Jonnie & Lauren xxx

The easiest decision I ever made was marrying Mr Birch 13 years ago today. I didn’t have to mull it over at all. I wanted to be his wife, I wanted life’s adventures to be with him. As soppy and cliche as it sounds, he was the missing piece. I absolutely felt complete.

Little did I know about marriage, life, and what would lie ahead but choosing this guy I fundamentally believe was the wisest thing I’ve done. I couldn’t have come out on top of the things we’ve dealt with if I had chosen someone else. He’s charismatic, energetic, playful, laughs like Jimmy Carr, smiles like Chandler 😂, he’s sensitive, calm, and completely without malice. When I hear women sometimes complaining of guys not pulling their weight I feel grateful that he has always been domesticated too. All of those pluses outweigh how much he annoys me. (Mostly 😉)

Figuring out how to balance the engineer brain with human emotions and reality has been a process. Not for the faint hearted haha! He’s had to figure out how to try handle a council estate, loud mouth, very rough round the edges middle child on steroids (never-ever literally!!) attitude 1 of 6 kids and emotional wreck; after coming from a home of 2 kids, and youngest child (syndrome 😁). The two processes have head butted a lot!! That hasn’t been a pleasant process as we’ve dealt with some difficult issues alongside the normal stuff.

We dealt differently with Lauren’s diagnosis’s. It’s possible to work together, but you have to figure out each other’s needs, to allow the individual to accept, deal with, and process to be able to come back together and lean on each other. There’s no guidance book. I can honestly say that if it wasn’t Jonathan next to me- I would be single.

There’s few people I’ll take advice from. Very very few. He’s my No 1. I do actually listen to him. Not always- because I am actually right a lot 🙂

He’s given me something to keep coming back to in the storms. Him. His kindness. His compassion. His ability to fix most things (his engineer ego just got bigger). That’s what engineers do. They fix things. This guy is one of the best at that. It bothers him when he can’t.

The past 3 – 4 years have been our hardest. We’ve had some personal big things, smaller things, and extended family issues to contend with. This guy has been right there up front and central to it all offering his support.

I was given some information a few years ago that broke me. I knew I had been abused as a child. The puzzle wasn’t complete. I was finally told some things I should have always known. It shattered me. It nearly defeated me. Jonathan held me together. I don’t like being given sympathy, just help when needed. He has been the very definition of what home feels like. The calm amongst all storms. He pushes me to do better and keep going. No one else would have stuck around. He did.

13 years together and it wouldn’t be right not to mention part of that journey is this beautiful relationship

He adores her, and he is her favourite person. He protects her, comes to appointments with us, reads to her every night when possible, and does as much for her as I do. He’s fully invested in her future, her happiness, and works so hard so she has everything she needs. He has so much love for his girls. We’re very lucky.

I’m better at badminton, he’s better at volleyball. Haha- OK – the swine is better at EVERYTHING!! If he wasn’t so nice, I could really despise him 😄

The biggest lesson I have learned is that storms will continue to come. We’ve had many. Marriage is hard flipping work. It’s not always nice. We don’t always agree. We sometimes don’t even like each other! It’s accepting everything that comes with the other person. Dealing with those things. Not abandoning them. Marriage is a commitment to keep going and facing these things together, building a foundation that is solid and can withstand the storms together. The longer we’re together, then the more solid it becomes.

The truth? ….

I can’t wait to see what the next 13 have in store for the Birch’s because even though it looks tough, and is tough dealing with our problems- we are happy and I wouldn’t change things (barring cf- that can totally do one!!) for the world.

Love you Birch- thanks for always loving me xx

I won’t profess that my childhood was amazing and carefree and that I’d like to go back. It was ok, but I don’t want to. But when I was 23 I married Jonnie. It was as carefree as I’d ever be and sometimes (without wishing Lauren away for a second), I wish I could be that young and carefree again.

Do you ever have days where you just wake up and get sad at how some things have turned out. I find it overwhelming some days and I sit and cry. Man alone I miss my brother Kev. So bad sometimes it physically hurts.

I miss Nanna.

I miss my own time. I rarely get it these days and it’s taking its toll.

I miss the times where I didn’t constantly have to be switched on. Thinking about something and everything. What’s next. Gosh I don’t remember what carefree feels like.

I literally just cry it out until I feel like ‘that’s enough for now’. Life is just flipping hard.

I don’t know why today is one of those days. Maybe I’m just burning the candle at both ends and I need to stop and rest a little.

I read a quote recently that said ‘patience is composure during hard times’. I haven’t always had composure during Lauren’s life. I’ve harboured a lot of anger and a general pi££3d off attitude. And that in itself was a hard load to carry. I’ve learned to cry, let it out, and then just keep putting one foot in front of the other.

I do wish life was easier. I can’t deny how much I’ve learned, how much I’ve been given, and how much I now love more than I ever knew I was capable of. Without the hard times I wouldn’t be becoming the person I’m supposed to be. Most days I don’t feel sad. I’m the luckiest girl in the world in my heart. ** shout out to the kindest human I have ever met** Jonathan Birch. I love you Jonathan. I don’t know anyone who could take my fear and help me turn it to faith and strength, like you do. You are quite literally the calm to my storm!

In the picture of Lauren’s baptism here, I go straight to you. You’re forever watching, and loving and I’m so very thankful you are ours.

Lauren is so sensitive to how people feel around her. If you’re sad- she knows it. Her hugs in those moments let me know that we’re all in this together.

As December begins, we as a family are taking on the challenge to #lighttheworld because every person has sad days, fighting through trials. We want to spread some happiness and smiles in a world that can be tough.

If you choose to be anything- choose to be kind (I need to be way kinder than I am!)

A xx

Life is never boring that’s for sure. We are still trying to sort a school place out for Lauren. Man she is SICK of me haha!!

I can’t even begin to explain who went wrong and how it’s all gone wrong, but we think there’s an actual plan in place now to have Lauren in school in the next few months! It’s exhausting. Mentally exhausting. Jonathan has done lots of the liasing because my brain is fried and he noticed and took over lots of the tasks that we’ve needed to do.

We are currently in disagreement resolution. We are submitting tribunal papers this evening. If we end up there then so be it. She needs school, Skipton school is the only close suitable one. So for now that’s our plan. We’ll see how it plays out !!

Lauren’s weight has increased twice now by a 1KG each time, and so we are now waiting to see when the bronchoscopy will be to check the progress of the bacteria infection in her lungs. We have postponed the gastrostomy until/or if she plateaus in weight and then if that happens we’ll jump back on the bandwagon of waiting list and get that done too. We feel like we waited all of summer and had they done it already they would have relieved some stress, but they didn’t and so we wait to see what her body is doing now that she’s eating more and hopefully sorting herself out!

Man I love wating, it’s like a game of who will snap first, me, or me hahaha!!

Will keep you posted on her progress and the schooling situation once we know anything!!

🙂

 

The #MeToo solidarity amongst victims, I think it’s a powerful gesture and certainly has got people to open up even if it’s only the #metoo and nothing else. Some women in the public eye finally started talking and in the weeks afterwards a storm unleashed on people – mainly men – that have taken advantage of women, and as it has unveiled, some children. It makes me sick to my stomach that these men have thought this was OK. Well, they’ve thought it was OK to try to get away with it. If they truly thought it was OK then they would have publicised it themselves instead of having to wait until their victims found courage and a voice to come forward. Some women out there are culprits too. Shocking I know, but it’s true-you might even know some of these people.

The problem with #metoo?? It isn’t those who write it…

Have you seen one and thought any of the following to yourselves??

*Liar

*I don’t believe them – they’re attention seekers

*They’re after fame and a payoff

*Why are they trying to drag up the past

*They’re damaging that persons reputation

*My goodness me, it’s just a bit of harmless fun, nobody got hurt

*Why haven’t they said something before now

*S/He is a trouble causer, I don’t believe them

*None of my business

*They should have dealt with it years ago-just let it go

If you have then the only problem with #metoo is YOU.

I stand completely alone in naming my abuser. I don’t mind standing alone for the most part. I’ve come to be pretty strong in a lot of things. But others know what he did. I don’t regret confronting the issues, or being abandoned by those who should love me most and protect me. I don’t even care if some who have been told don’t believe me. What I do care about is how we as a society condemn pedophiles that are easy targets because they have numerous accusers and are publicly known. Victim after victim has come forward and rightly so-we are disgusted. We wouldn’t let those people near our families, or give them the time of day, and certainly wouldn’t tell the victim that it’s OK we believe them but they still like the pedophile. Or to hurt the victim because we don’t like them personally, tell them after some thought that we think they’re lying. I could name a few of those people who you wouldn’t go near for a Million pounds. But they don’t deserve any more time spent on talking about them and the heinous crimes that they committed.

If the perpetrator happens to be someone who you’d rather not be named as the bad guy, someone you would like to forget did some heinous things out of ease and comfort to yourself, someone YOU can’t imagine doing some dreadful and vile – things to either women or children whether it be boy or girl, then that’s OK isn’t it??? You can forget the lives that have been damaged and trauma left in the lives of innocent people until they got their hands on them. Just pretend it’s nothing to do with you and society can go on being sordid and evil until each victim possibly stumbles across other victims so they have a support network of people who believe them. People who because they have been violated know exactly how it feels to have parts of them broken that seems like they can never be fixed. As long as you get to shy away from standing up to what is right then your bubble can keep on floating, right?!

#Metoo means I know how it feels to be a victim. All my life. I just didn’t know who had done the most vile of acts to me, until I was told years later that another child happened to say ‘No, but he did that to April’.  Knowledge never given to me, so I didn’t know how to fix myself. I thought if I spoke up I would be counted as crazy and attention seeking since my childhood had been rocky. I have blocked out most of my childhood, and to be honest I don’t ever want to remember it. Attention is the last thing that I love. You might be thinking then why write this! Well, because the attention shouldn’t be on me should it. But the ‘blame the victim’ mindset makes that the case far too often.

I have sought out therapy, and still visit from time to time because unfortunately abuse becomes a part of you, however you deal with it. It engraved something upon your life that you don’t get a choice about, you have to live with it. I’ll always be a victim of abuse. I have fortunately found help that helps me enough that I can fight on and make sure I still have a life full and productive and happy. I would be lying if I said it doesn’t haunt me sometimes, but during those times I look around at courageous people who have come forward in the face of adversity (mostly society/family/friends) and stood up and spoken about what has happened. They are heroes. They deserve the positive attention. They deserve medals, because someone without doubt will have made them feel unworthy of being the victim of abuse. How sick and twisted is that!

One reason people don’t come forward is to protect themselves in case anyone tries to make them feel like they don’t deserve people to be disgusted with their abuser. In case someone makes them feel like they are lying to hurt someone else. It may just break some vistims beyond repair for family and friends to not believe them. Especially when you have an abuser who feels no remorse and will not admit what they did. Or one who tries to act like a victim because you have confronted it. Society has took a sick twisted turn on who should receive kindness.

The bottom line.. there’s nothing at all wrong with #MeToo, and if you think there is then you yourself, in my opinion, need a change of heart and I sincerely hope it never comes through being a victim of abuse.

Change is a funny thing. It happens all the time and yet I thoroughly hate most of it. Time goes too quickly for me. People come and go from our lives more than I’d like. I feel an urgency of my time here on earth and the things I want to do.

Lauren and I were out yesterday in Ilkley and spent a few hours in the park collecting leaves, playing on the swings and roundabouts and eating our food. It was quiet. There was a crisp cool to the air whilst the sun was shining. It could have been a fresh new spring day and I could have fooled myself that summer was lurking if it hadn’t been for the leaves falling and changing colours all around us. It got me thinking how this year hasn’t been too different from others for our family in most ways, and yet in others there’s been some real shifts in our family dynamics.

Lauren’s health is as the seasons. It can change day to day especially at the minute. Mycobacterium abcesses is a seriously dangerous bacteria. It is also called non tubercolosis bacteria. It can be agressive and cause such damage to the lungs that transplant is needed, and can unfortunately take a life of those it gets hold of. My personal journey trying to come to terms with what we’re fighting has had it’s own seasons of fear and tremendous anger, and then a new leaf of fight within and finally giving my Heavenly Father some of my Faith that I’d perhaps lost a bit of, and a whole heap of hope that Lauren has so much more time here on earth that we will be OK and she will overcome this infection. I still get days where I feel despair and feel like I have to fight out of that mindset. I’m lucky that she requires so much attention- it helps my focus to be on the good stuff mostly 🙂

Marriage is a complex thing. By no means do I wish to sound flippant, but ours has had some major bumpb in the road-and it’s 90% been around trying to deal with all of the issues Lauren faces. We deal with things so differently and we have struggled to trust that the other will help us and be there like we need. This year we have had some therapy together. All I can say is I wish I’d done it before now. It’s been life changing for Jonathan and I and helped us get back to where we know we are-inlove with each other and perhaps more importantly there to care for and about each other whilst we journey on our rollercoaster together. Lauren is so intune with people’s feelings. She picks up on sadness and despair far quicker than anyone I know. Not just ours-those around her at all times. This actually helps us when we’ve been cross. Having to hug her and be kind in front of her. It’s catching!

Lauren’s schooling has changed. She became sad to be going to school. If you know Lauren, you know she’s never been sad to have her own time and independence away from me haha! Not even at nursery. So when she started to fight me every single morning and cling to me not wanting to go into school, we knew they were failing her beyond what we had even thought.  So whilst already having plans in place to move her, we pulled her out of school and currently trying to home school (Trying my best ha!!). Do you think she likes shopping at Eureka???!!! 😄😄

The special school refused to take her in the end because they couldn’t find a ‘suitable peer group’. It’s utterly ridiculous. There are plans underway to combat this but we are re grouping that maybe this just isn’t what’s meant to be. We don’t know what the future holds for her. We’ll keep searching for now and hopefully we’ll come across a school that just fits.

We are of course elated at the results from last weeks CF clinic. Weight up 1KG and Liver scan clear (we’d more or less thought it would be), and even more so we got updates on new CF treatments that will be available at the end of 2018 that will change the way we manage Lauren’s CF completely and in a very positive way. It made both Jonnie and I quite emotional that we could actually be in the running for drugs that could keep Lauren healthy and healthier than she currently is-continually! It’s so exciting. We just have to get there and keep her well until then!

It’s funny how friendship changes too, some get stronger and keep you going, some disappear as if they weren’t even there. Some become acquaintances and you wonder if you ever knew them. Same with family relationships. I feel like I’m in a constant whirlwind with who wants to be kind and my friend and who wants to stay away. I can’t help how my emotions are constantly up and down as I try to comprehend and process Lauren’s health. I think about it all the time. It’s relentless. I also don’t feel like I should have to explain myself to people all the time either. Yet right now I feel like I need to defend that Jonnie and I have a tough road to walk. It’s a constant need to try stay strong, deal with the next thing. I don’t always look happy. I try not to be unkind though and I do say I’m sorry if I have done something wrong.

My lovely hairdresser and I had a conversation recently where we have had some similar issues arise, and she simply said she just worries about her and her husband and her children. Those in her four walls of her home and concentrates on that as you can’t control anything else really. That is exactly what I’ve been trying to do. It’s tough, because in these four walls when Jonnie isn’t here (he’s been away alot with work!) Lauren doesn’t speak so it can get lonely, but I do have some great friends who don’t mind listening to me (I don’t think ha!) and I’m super grateful for them, especially over the last 6 months when things have been most difficult.

Change is inevitable. Life is exactly that-Change. It’s how we adapt to those changes, and deal with our own personal change along the way that will lead to happiness or sadness I guess. I’m trying to stay in the mindset that I can only control me. Don’t get cross over things that happen-look for the lesson. I think I’ll still be trying when I’m 90! But I’ll still be trying. That’s what matters in the end, did we keep trying and did we embrace what life throws at us in all the seasons, come sunshine or rain.

Some of the things we did this summer were so simplistic and so fun and lovely. I feel a bit like a cheater as I’m still getting to do them. We hardly spent any money at all above and beyond our normal expenses…. Free fun! The best fun!

Lauren loves people watching, waving and saying hello. Luckily for her we got to go to some places filled with people!!

Cliffe castle was a favourite that she got to go to with Aunty Becky and clan and Grandma and gang and mummy ventured out there too. The grounds are lovely, accessible and even though they don’t have anywhere for me to change Lauren except a toilet floor!!!!!!! (I’m not kidding!) the museum itself is lovely and I had forgotten a lot of what is in there. I really enjoyed visiting and looking round.

We visited Ogden water, Fewston reservoir, Keighley Tarn, Lund park, Standbury park. All lovely grounds, and/or great views of this beautiful part of the world we live in. Nothing beats a bit of fresh air.

We were spoiled (me especially) with having Catherine so close for a lot of it. We miss her and her family!! Come back!

Lauren has done plenty of swimming, shopping, entertaining cousins at our house.

We have begun a Friday night movie night with Lauren. You would literally have to be there to understand the level of joy that Lauren gets from having mummy and daddy and Lauren all in PJ’s, under a blanket whilst she cuddles us and we watch a movie of her choice. You would think she’d won the lottery. I’ve never ever seen someone be so excited to be doing something so simple. I love that little girl! I have so much to learn from her.

Things are a bit quieter now everyone is at school. I think Lauren is missing being around children. I feel sad for her, but even when she was at school they isolated her way too much for anyone! Especially Lauren! But we will still go visiting places and swimming and do some learning at home. We’re filling our time.

Imagine having a human being that you love so much that you are constantly trying to be the person they need. For the good. I’ll keep on trying forever because she deserves to see it all, learn, laugh, love and embrace life for all it has to offer. I hope she forgives my short comings. She amazes me.

We still await news of the appeal to the special school. We still await a date for the peg feed. She still has days where she’s sick. She still doens’t love eating but for now is maintaining weight and we’ll certainly take what we can until we can have some peace that nutrition is going in regardless of her eating. Life is certainly a rollercoaster, and to be honest the older I get the less I want to be on one haha! We’re always trying to look for the good and stay positive. Lauren definitely helps and this summer we have done our best to enjoy it all.

Ready for Autumn?? Nah, me neither!!

 

Lately my Nanna has been on my mind a lot. I have needed her words of comfort sometimes over the last 9 months, but I also really miss her tough love.

Summer was only slightly different for us here; whereas other people with Kids out of school had a difinitive break. Lauren has been mostly out of school since Dec 2016. She managed 2 weeks in Dec 2016 I think, 5 days in January, 4 in Feb, and I think 1 in March. She only went on the days she could manage from 10:30 until 2pm and on Fridays I picked her up at 1pm, following her hospital stay at the end of March. Why does that bring me to thoughts of my Nanna? I tell you why; no matter my problem my Nanna’s reply would be ‘Have you prayed about it?’. She knew where her comfort would come from, and through that faith that she had she wanted to pass that on to those she loved. I miss her. I actually really miss her telling me Lauren will be fine. Stupidly it used to annoy me because I think she did it to reassure me and of course “I don’t need anyone right!”. Now I wish I could hear her tell me that my little girl will be OK.

She didn’t understand Cystic Fibrosis. I knew that. But by heck she would stay away if she was ill (maybe she feared my wrath haha!) and I know it was becuase she loved Lauren. She frustrated me. Mostly-she loved me. It’s not her birthday, that would have been on June 1st and she would have been 90. It’s not the anniversary of her death. Really, today, it has no significance at all except I know she would have been able to comfort me by her words of absolute, her favourite – ‘she’ll walk, you know’. Nanna did know.

She would never listen if I got cross about Jonathan, or maybe she would, and then she’d tell me ‘he’s a good man’ and I knew she loved him.

I think I share some traits of Nanna’s. We had similarities for sure. She was unique! She tried to hide fear, be strong, and help other people. She wasn’t afraid of hard work. She was always up for coming wherever I asked. I thoroughly miss my road trips with her. She would come to choir concerts with me, the British Pageant, conferences when I was going alone. I would only have to call and say I’m going, you in? and she would join me.

It’s funny what memories do. It’s like we get to remember all the good bits collectively. She drove me insane, but I really really miss her faith, her confidence and her love. Nanna fitted a parent role a lot of the time, I didn’t have an invested father. Jonnie and I lived with Nanna for 2 years. It doesn’t matter who the person is that you lose in your life if they filled a gap in your life and heart-you can miss them as much as you’d miss anyone.

I just really really wish I could hear her tell me that everything will be OK. I look forward to the day we meet again and I hear her laugh after she plays a prank on me. Priceless x