Author: April Birch

I realised something a few years ago. Winter is a very lonely time. Most people get ill with some bug or other, and we try to avoid people as much as humanly possible. I don’t care if this offends people. My child’s life is just too important, and her quality of life just as important. So if people decide we’re no longer friends because they don’t get phone calls, and arranged catch ups with me/us, then to be fair, good riddance.

I thought for that past few years, it was just winter time. This year had me realise something though, it doesn’t actually ever end. No matter what we have planned, what the weather is like, what we think is spring time is here; our ‘winter’ never really ends. I spend a lot of time looking into whether or not somewhere is a safe place for Lauren, or investigating just how ill those people are that have not thought to stay at home. It is a constant battle. But those friends who love us regardless, and even though we come with such baggage that will appear-even though it is not meant to-judgemental and harsh and like they’re not good enough or their house isn’t; those friends are the ones we keep close.

Over the winter period this last year, we had people that just said-get in touch when you feel you can be round people again. That is such a relief. During the warmer months we definitely try to hang out and have catch ups with people. It is so hard though because germs and bugs never ever end!

I hate that I have to look at people’s homes, and make sure the things that aren’t safe for Lauren, aren’t there. It makes me feel bad, but Lauren is just too important, even more than friends are.

The beauty is when people just understand, and hold nothing against us, and get exactly how hard it is. So no offence is taken and we remain friends, and stronger ones at that.

I don’t know if that makes sense or just seems rude, but winter just isn’t the only time our fears are heightened. It never ends.

There are many dark clouds each and every day for me and my little family. You don’t see them. They hang over just us 3, and we’ve learnt to keep searching for the Silver lining amongst them. It’s not easy but here are just a few examples of what I’m talking about….

The dark cloud is that my beautiful little lauren cannot go a single day-scrap that-a single meal even, without medication. It would leave her with such bad stomach problems bless her heart. It hurts her little tummy if we mess the dose up a little (“Then don’t”- I hear you say-I’m awesome so I clearly wouldn’t do that on purpose….it’s just a complicated dosage system and without knowing exactly how much fat in grams is in food then sometimes we get it wrong 😦 ), but if she went a day without her numerous medicines then instantly her poor little body is as to germs and bacteria as honey is to a bee, irresistible. Even whilst on the medicines, she gets sick too much. So no single day do we get to just relax and have a stay in bed day or lazy day doing nothing, there is a routine and it is here for always and always. Oh man just writing this I’m welling up. It’s a huge burden. Sometimes I start having a little panic attack at how much I’m in at the deep end and suddenly can’t swim. It’s a weight upon my shoulders that I’m learning to carry.

The silver lining. Is there one? After that, it doesn’t sound like it does it?! Of course there is, and it’s exactly what I wrote above. We have a routine. It keeps Lauren alive, relatively well, and she gets to eat and have her digestive system process such foods because of modern medicine. Not that many years ago we’d have lost her already to CF because there wasn’t such amazing treatments out there. So the silver lining is there is purpose in each day for me with this routine and I see the big picture with every antibiotic several times a day, each vitamin and supplement for her liver, and each time she’s eating and I have to search frantically for the creon because, yes, I forgot for a second she can’t just eat something and be done with it.

The dark cloud could be that Lauren cannot communicate by speaking. This is hard. But my silver lining here is immense. I know Lauren so well that even with just a single gesture from her I can tell you the sentence she is trying to say. I didn’t know you could know someone so well. But we have conversations. She speaks a thousand words to me with a few looks and glances and gestures and pointing. Our souls communicate. I don’t know that I would have that level of connection between me and a ‘typical’ child. I’ve witnessed others thinking that she’s disabled so can’t be that hard to know-so I know what she means and it’s this…..and they have been soooo wrong. I never fail to correct them, because she has a voice, it is just expressed differently to ours.

The dark cloud could be the fights we undertake to get the best for Lauren. The silver lining is that I have slowly built a small army of amazing people all on Lauren’s side during these struggles and know exactly who to call for things now and who will be in our corner. It is a formidable team!!

The dark cloud is definitely the sleepless nights we have with Lauren. Lets just say when I’m awake fully I’ll keep searching for the silver lining here…………….

Another dark cloud could be that when I see her cousins mostly, achieving all that they achieve and recognise Lauren will not achieve those things quickly, or perhaps ever. It is a hard one. It’s hard but the silver lining is – it is probably only hard for me, and Jonathan. Lauren does have her aspirations. To walk and talk I’m sure of it. I can almost guarantee you though, that she does not care if she gets to do sats and gcse’s, and other work that will have no relevance to her life anyway, because she is happy with exactly the kind of work she does do and learning at her pace. She doesn’t care that it’s not the same, I’m pretty sure it goes completely over her head that all their work and such is different!!! So I should stop letting those things matter. Just rejoice in my nephews and niece and their achievements and like wise my little Lauren.

A dark cloud could be being anxious and scared to take her places because of germs the average person wouldn’t even consider were about, but I know oh too well they are there and dangerous. Going to people’s houses for example, I try not to take her to many. In damp, or stagnant water (water over 24 hours old), in fresh flowers, or around sinks or on bars of soap, in sponges etc, is a killer germ. Going outdoors on days out to farms is so easy for most, but straw and hay hold another deadly germ. Just two of some of the things we have to think about. It’s ridiculous! The silver lining here is how understanding my family and friends are. Flowers have been thrown out, sponges gone, farm days and outings mostly done without us knowing so I don’t get down about Lauren not being able to go. And of course the fact that family and friends learn about the germs, and dangers so houses are Lauren friendly. It matters. Because if I feel a house is not suitable, she will not under any circumstance go back. And this is not saying a house is dirty, it’s just some environments are safe for us and not for Lauren, and we as her parents have to choose!

I was looking for another dark cloud contrast here but have none…

A beautiful silver lining is the love she spreads, it was said recently by a staff member at her school, upon Lauren’s return…”oh I’ve missed your smiling face Lauren, it really brightens up my day”, what more of a mission in life could one possibly want for their child, than to to make it a brighter, happier more beautiful place to be? None is my answer….

On the 9th January 2011 my Cousin Daniel decided it was time to end his life. He was found by family. He had planned it all. Life was just too much for him. He had suffered much at the hands of others who should have cared about him and took care of him. But ultimately he had made his own decision and took his own life, leaving a daughter and many family members behind, truly devastated.

Whilst I loved Daniel-from the distance that was put between us, we had obviously grown apart. The news was heart breaking though. We had messaged on Facebook just before Christmas 2010. I had no idea things were so bad for him.

We travelled up to the funeral in a car of Kev, me, Jord (I think?) and Becky. We had booked the hotel that my Uncle Andrew (Daniels Father) and his wife Andrea and my mum were at.

I realised something on this trip…..and really this is what this post is about.

The evening we arrived, ready for the funeral the next day, we all had a meal together in the hotel. And as conversation took it’s course Daniel came up and how horrible the whole thing was. Mum said just in the conversation ‘it must be horrible to have to think about burying your child’. At this point something happened, I hadn’t realised how much that very thought haunted me. I burst into tears and replied very quietly ‘yes, it is’. She perhaps hadn’t realised that this reality could indeed be mine one day, and responded with affection ‘then that must be a really hard thing to live with’. I did my best to choke back those tears and compose myself, because I didn’t want that evening or next day to be about me at all. We were there for Daniel. It was hard to do though, because it really does haunt me.

Not nearly as much as it will other people, even other parents of CF kids. Lauren is so very blessed and stays relatively well considering the odds against her. Man alive though does it break my heart when those thoughts float around- that one day I would have to plan her funeral.

I know people who have lost children, so in no way do I want to pretend to know what that feels like or what that reality is to live with; I don’t. I just know the very thought of it shakes my entire world so I pray to God I won’t have to live that reality for a very very long time.

I’m glad other people pray for that with me too.

I remember getting to the airport in Cyprus on our way home, Jonathan had to go get the rest of the luggage from the car and I was left with Lauren waiting, we saw some seats in between a couple of fellow travellers so we sat down. There was an older man, mid 40’s I would guess on one side. On the other side of us a younger man, early 20’s I would guess. I would take an uneducated guess that they were both Middle Eastern. It became clear quickly that their English wasn’t great. Lauren immediately, as she does, got their attention and waved and smiled. Both said Hello. I didn’t think they would give her any attention, Why? Well if I’m honest they were both single (as in no companions with them here), they were both guys, I thought they wouldn’t want to give any attention to the little white girl in front of them. More so the little disabled white girl. I thought race would come into it and they’d ignore her. I judged them, a quick judgement that we all probably throw out there numerous times a day. I completely got them wrong and learned a lesson very quickly from my then 5 year old daughter!!

In her hands she had a slinky that we had bought her that day, she loves them. She also loves holding one end and someone holding the other and making it bounce up and down.

She quickly offered the younger guy the slinky, he didn’t really know how to respond straight away, said hi again, and smiled. He was trying bless him. So I took one end and kind of played with her with it to show him what she liked to do, so that if he did want to, even though she couldn’t talk, he understood what she wanted from him.

She then offers it to the older guy, who takes one end and plays with it with her. She was so excited. She took it back, she then offers it to the younger guy. Who went to take one end, I think she teased him and I can’t remember if he got to play with it with her or not. She played it again and again with the older guy. Until we had to go and she waves bye with a big cheesy grin on her face and they both respond saying bye.

She has no boundaries, no prejudices, no judgement within her. She is pure, and I’m glad I learned quickly here, and let her capture the attention of our fellow travellers, because if I’d stopped her in case she annoyed them, or I thought they wouldn’t respond so didn’t let her try, they wouldn’t have gotten to interact and on this occasion both parties involved smile, laugh and play with the slinky!

Who knew my little Lauren could teach me so much. Humanity connects people. The very essence of being human and wanting contact with other humans. And these older men were no different when my disabled daughter wanted to connect with them. Not every situation ends like this and some people shock me the other way round and ignore her. Just because another mother is around with their child-doesn’t mean they want to smile back at my beautiful Lauren. (Few and far between those kind of interactions thankfully!!)

However, I learned my lesson here in the Cyprus Airport. Do not judge. Let a person act first and teach you who they are. Do not Judge 😀

 Who can’t love that massive smile?!?!!!!!! 😀 xxx

Getting married to Jonathan was a very easy decision. I knew I loved him. I knew he was a good man and I never had ‘cold feet’.

Marriage isn’t easy though. It is hard work of sacrifice and devotion and loyalty through the good but I think more importantly the hard times. Why do I think it’s worth all of that? I think it because I believe you can only feel the depths of love and happiness if you have been through the equal depths of pain and sorrow and heartache together and worked so hard to build a foundation that is unbreakable.

I am not sure if we are at an unbreakable point. I do know that we are headed there because we both want to be. We both love each other, and are fiercely loyal.

We have strengths that compliment each other, we revel in them. We also have weaknesses that are not good for each other, we are trying to figure our own out so we can work on them and become the spouse we each want and need.

I remember the guy that performed our sealing in the temple, on our leaving the building that cold eve of 18th Dec 2004, he said ‘be happy, that’s all you can be, happy, so be happy’.

That’s all we all want.

If I’ve learnt anything from the last ten years, it’s that I want, I need, at least another ten because time goes too quick. Time is all we have and I’ve wasted some important time being angry when I need to be happy.

But I don’t want this to be a gloomy post. I have had some great moments with Jonathan. We bought a car together, a house, have supported each other in studies, and new jobs. We had a beautiful baby girl together. We have faced battles through her life together and been a formidable team. We have enjoyed some travel and the simple pleasures of life together. We have some great family that we love and some friends who are as close as family that we couldn’t be without. I have laughed so hard my stomach has hurt, Jonathan makes me happy. He also annoys me, A LOT! But I love him, so I’ll keep him and let him carry on!!

It’s hard to give my whole self to Jonathan, I feel like my strength is taken away with everything I have to be and do for Lauren, like there’s not enough room to give anything else. However, room needs to be made and our goal is to make sure we love each other like we should and become even stronger and even more formidable and more in love than I ever imagined possible (pass the bucket?-well I mean it so keep it close for the future hahaha!!)

After all that though…getting married in December wasn’t the smartest idea, sure at the time it was lovely and romantic. Every year since it’s been a pain in the tush figuring out gifts and a little celebration. It wasn’t totally difficult, you know, until we thought why don’t we have a kid in Dec too???!!!!!! NUMPTIES!!!!!!!

Regardless of that though – Happy tenth anniversary Jonathan, may we conquer many more of life’s battles together and enjoy all of life’s victories side by side. xxx

I love Christmas time. I remember being a child and gathering at some ridiculous hour of the morning at the top of the stairs waiting for mum to escort us all downstairs to our pile of gifts. It was fun sharing that experience with 5 others! Mostly we would read the Christmas story first. Sometimes we would have done it Christmas eve.

Christmas is fun! And I love giving gifts, and honestly love giving them more than receiving. I make sure we give to a charity collection each year. I make sure I remember someone who may think they have been forgotten. I also make sure Lauren loves giving things to other people. She does!!

I love decorating and how different people are, just a bit nicer and kinder at this time of year. I love the party’s, the myriad of Christmas songs and movies to watch. I love how Lauren believes in Santa and gets so excited! I love the joy that this time of year can bring if we let it.

Mostly I adore this time of year because we celebrate, along with the rest of the Christian world, the birth of our Saviour Jesus Christ. I believe in who he is claimed to be, the son of God. I believe that I know him, and I find peace in his message of peace and love and hope.

I love Sundays in December more than any other because we sing Christmas Carols in sacrament meeting at church. I love the Sunday before Christmas. It’s the best Sunday of the whole year. We have a shorter meeting to start with and then go into the Christmas part of the meeting, a nativity/carol service. It honestly makes me feel complete.

6 years ago I was 9 months pregnant and having my child the very next day after said service. I was nervous, but I felt like it was a special thing to be pregnant at this time of year. And we too got a very special baby.

Lauren’s birthday being so close to Christmas, as mad and crazy as it is, only adds to the magic of this time of year. She is one very loved and incredibly special little girl. When I watcher her today in her school nativity, dressed as an angel I choked up a little bit and had to stop myself from crying. She looked so angelic, so perfect to me. She has grown so much since being in school and she was extremely well behaved throughout the whole nativity. Christmas arrived for me today. My heart is full of gratitude. Not only for my Lauren and the amazing child we have, but also for my Saviour who taught us so much through example of living a good life, being kind to all.

So maybe at this time of year, for whatever reason you celebrate, maybe we could be a little kinder, more forgiving and think of those who need an extra helping of mercy this season. Spend a little more time than money on loved ones, and tell people who are important that you love them!

From Jonathan, Lauren and I, we wish you all the peace and happiness that Christmas time should be filled with and wish you a very happy, prosperous and most of all healthy 2015 xxxxxxxx

We had an amazing Holiday in October 2014. We visited Larnaca, Cyprus. All 3 of us relaxed, enjoyed, played and didn’t have a care in the world 🙂 If only every week was like that one!! 😛

We chose Cyprus because I’ve always wanted to visit there with Jonathan, and he speaks the language and we thought the flight length was a good way of testing Lauren.

The lead up to the Holiday was testy waters, she’d been ill over the summer, was back at school and germs were rife. We weren’t sure if she’d still be on antibiotics that made her skin super sensitive to the sun; but alas all was OK and she was well and we had an amazing time. Chilled. Sunbathing. Playing on the beach. sleeping quite a lot. We hired a car so didn’t rely on anyone but ourselves. We got along for the whole holiday.

Lauren loved playing in the sand and sea. We couldn’t have had a better time if we had tried.

Boy oh boy did we deserve it. A nice break to blow the cobwebs away.

Lauren was such a good girl all holiday and especially on the flights. I was so impressed!

My brain automatically thinks things like ‘was this the calm before the storm though’? I can rarely just relax, because I know any second things can change so I feel I always need to be ready. But I tried so hard, and managed to get sucked into a perfect little week of complete bliss.

When you decide to have a child, it perhaps doesn’t enter your mind that in a way the child is having you-metaphorically speaking. It’s all exciting that you’ve created this baby with someone you love (with exceptions of course(not meaning my Jonathan!! ;-D)) and are about to take yourselves upon this adventure with them. (Please note here-It wasn’t exciting for me, not past the first 6 weeks. I got sick and hated all the rest, and everything that could make me feel rubbish, did! Yuck!)

It doesn’t enter your head for a second that things could be bad, things could be really bad for this baby and you’ll be thrown into a journey you had never imagined.

Lauren was born on the 22nd Dec. That’s right-right before Christmas! Terrible timing on our part!

Our holiday season should have been filled with a relaxed, chilled boxing day. Sorting out Lauren’s clothes and all her gifts that we had been flooded with. We should have been meeting family and friends that we were so excited and proud to show her off to. We were mesmerised by her and we wanted others to meet and love her. New years is always at my mum’s and surrounded by family. We should have been there with my niece, new nephew and impending baby Bray. We should have be surrounded by family helping me figure out those first few weeks. I should have been resting and recuperating from the Caesarean section. Healing and basking in the new life we had with us.

We didn’t get that. I didn’t get that. On boxing day we were going from hospital to hospital, in my 4 day post op state I was trailing the corridors of Leeds General Infirmary trying to find the ward my baby girl was on. I was in physical pain with all the walking, my scar was fresh and it hurt. I needed to find her though. I was sending her to the operating theatre on the 27th Dec and I was sat uncomfortable in a car for hours awaiting news that she was OK and what had been up with her. For the next few weeks I sat on horrible, uncomfortable chairs for all the hours in the day that I could, next to her waiting for her to stir so I could hold her and not put her down until I had to leave. I spent those days eating crappy hospital or shop bought food most of the time. I couldn’t drive so I had to spend time in cars with people going at their pace, at their convenience. None of that was unbearable, and I’m grateful for those that helped.

When Lauren was 5 weeks old we begged the doctors to let us take her on holiday. That was for me. It wasn’t for Lauren. But our begging worked and even though some thought we shouldn’t have, we were let to take her out of hospital and go. It was awful. She wasn’t happy or comfortable. It was a horrible week.

Then it started to sink in. This baby wasn’t here for me. She wasn’t here to just tag along and accompany me on my little life’s path. It was all about HER. I needed to get a grip.

I flipped my life upside down. My life now revolved around her. Even more so than I could imagine as the weeks and months went by. And it has been my motto ever since. I need to make this about her. Give her everything she needed, give her life experiences, give her my all to make sure she was here to live rather than to just exist.

It’s not about us as parents. Selfish parents bug me so much. It’s about giving these little ones happiness through experiences and even if they’re uncomfortable, or not fun at all and out of our comfort zones we need to let our children have them because you had your childhood and now it’s time for them to have theirs. I don’t particularly love swimming. I have tried my hardest to take Lauren though as she really loves swimming.

Our recent holiday was amazing, but not MY amazing. It was about letting Lauren be in the sea and sand and make sure she’s eating and drinking right and had enough to keep her occupied and happy. That was exhausting. But it’s an experience she loves to look at the pictures from and she loved it. I didn’t get to sunbathe an awful lot (Jonnie let me do some!), I didn’t get to thoroughly relax and recuperate the way I would have if Lauren been ‘typical’ or ‘normal’. But even then, the holiday would have been about her. Because I have had my chance to be a child. It is her time now.

If you do think it’s about you and what you get to control in these little ones, your likes and dislikes passed on. Rules for the sake of rules. Making them grow up before their time. Not giving them the experience of life as a child; then in my humble opinion you are selfish and have gotten it the wrong way round.

Of course, I’m not saying I’m perfect and I struggle sometimes. But this I will say-I have done many a thing that I’ve not enjoyed or loved or had fun at because I know Lauren would. If I continue in that way I think we’ll have a happy child!!

It should be all about them, because before you know it they will have grown up and you will have missed your chance at giving them out of life what every child should have. A childhood.

(the first pyjama party Lauren had-many more to come, a Christmas eve special!)

I think it’s safe to say I’ve known myself and my likes and dislikes for most of my life. I’m fairly strong minded. It is also safe to say I have had to get to know myself in a whole new way since being married, and even more so since having Lauren.

I have had to decide who I actually like being around. Who I don’t. I’ve had to be so honest with myself about my flaws it is a bit painful.

I’m selfish. I think I should come first. I think most people have a bit of this in them, but I had to peel the onion here and tell myself this, then also tell myself I am selfish but this cannot continue. Someone else comes a 100% first. I should say that this person is my husband, Jonathan. I can’t honestly say this though. That’s how a marriage should be, but Lauren needs it so much more and is quite demanding with everything she needs, that I have to make sure my utmost best is done to be there for Lauren in every which way. I am trying to make sure Jonathan comes next.

I am extremely angry at my Heavenly Father, God. I am. Because I don’t understand why my precious little girl (not baby any more 😦  ) has to deal with everything she has to deal with. It just isn’t fair. I have actually come across a family that played on the fact that Doctors ‘thought’ their child might have CF. They told everyone she did. Until it was proved she didn’t. And you know what-I felt like they deserved to have to deal with all this pain. That’s not a kind, or Christian thing to say. But seriously!! Yet, we are the ones who deal with this pain. I’m angry because to a certain degree I understand why we have to face trials, heart ache’s. Opposition in all things. I believe in who God is, my eternal Father. I have had experiences I cannot deny nor would I want to. To some it may sound disrespectful that I’m talking about Deity in such a way. To those I would say, my relationship with God is a personal one. I have to let myself feel and work out my relationship with him by myself. Don’t judge me and I’ll show you the same respect.

I am bitter. I am not 100% bitter. I have moments where I look around and just get bitter because I see good situations everywhere. I see how easy life can be. And I am bitter.

I am not a great wife. I try and am trying even more so lately but I have got so much work to do. I am an OK wife. My goal is to be the one Jonathan deserves.

I have suffered with depression, stress and anxiety, and I still do. I have had to be honest with myself and seek help in the places that I know can help me. This help isn’t from church (some may think that’s what I mean). I need more strategic professional help to implement coping mechanisms. I do not cope with things very well after the last 6 years of non stop trials. It’s hard talking about mental illness. I have said for years I’m mental-flippantly and in no way to try and cause offence by my use of the word. But I do actually struggle with mental health problems. What a scary thing to admit to yourself. But my decision is to do all I can to help myself. The rest is written in the stars I suppose!!

I am an extremely devoted Mother. No one loves that little girl like I do. My entire existence is to try and be better so she has better. My life revolves around her every need. The moment I knew she had my heart-I committed to being the best for her. That is what I’ve tried to do through everything. Better at times than others. I see her limitations as a challenge to try something new with her. She does not like me most of the time. But I know what that little munchkin is capable of, and so I will continue to try and be drill sergeant but make sure she knows I love her. I have at times had to swallow my pride because someone else knows best where she’s concerned. However-there have been more times when I have had to push myself to fight for the best for Lauren. She has helped me grow and be strong and be more than I could be. An eternal connection is weaved into our souls.

I have become less caring for simpler things with children. I don’t know how to change that. I don’t mean to be. I have just seen so much, my tiny baby could have very well have been to weak to take surgery-then what! She survived major bowel surgery. Not the worst anyone ever had to deal with by far but she has been prodded and poked and had so much to deal with, that when someone has something trivial going on, I find myself thinking-get over it, it’s not life and death. One day I will lose my child to a horrible disease. Does your problem compare?! I don’t say those things because the tiny filter system I do have tells me that I’m being irrational. Those things are relative to the people involved. I try not to beg attention for my child’s condition. I just get on with it. Because that is what I want her to know about me. I’m a do-er. I’m proactive. I do feel things-deeply-but I want her to experience and enjoy life so I concentrate on that. I try not to focus on the life or death situation that hangs over us like a deep dark cloud. It’s there. But that’s not what I want Lauren to know.

I feel guilty sometimes, mostly when I am around my nieces and nephews without Lauren. I find myself happy that I get to walk with someone who doesn’t need my help to walk. I find myself relieved at how easy it is taking one of them to the toilet. How easy it is to explain something to them or playing with them because they understand how to play. Then I feel a pang of guilt because I don’t want Lauren to ever feel like she isn’t enough. It’s so hard.

I am grateful. To everyone who makes an effort with me, us. To understand how my life is and not be offended if I’m a bit curt sometimes. To everyone who understands how hard it can be, and they relieve the stress and burden for a short time.  I feel incredibly blessed to be surrounded by some incredibly amazing people. Lauren is one very lucky girl.

I know my limits in most situations. I leave rooms when people become too much. I try not to go into situations where I’m going to be too honest with someone else. I try to stay away from social functions or get togethers when I feel very run down. My family need the best from me. So I’ve had to slow down. I’ve had to stop overloading myself. I’ve had to realise when I just can’t do something even when I really want to, because it will leave me feeling worse.

I’ve started writing. I needed to write things down to get them out of my head, to process. I’ve needed to become more and more open with myself and I’m still in the middle of ‘who do I want to become’. It probably won’t stop-we are always evolving so I want a good grounding for the future me.

No matter how hard I am perceived to be, I have a very deep soft heart and don’t go out of my way to be unkind. Getting to know yourself and truly honestly admitting things to yourself about who you are is actually a very scary, raw and challenging task. I am still going. I realised opinions of others has very little chance of mattering to me. people I love have a bigger chance but I’ve got to be OK with me, and if I’m OK with me, then I’m OK.

We had a really tough few years, starting early 2012 and most of the challenges found a resolution by early 2014. Big challenges don’t always seem to come just by themselves. There always seems to be more, just when you’re down and don’t think you can take anymore-there it is something else to knock the wind out of you, break your heart a little more and test your sanity like it’s never been tested before.

We needed to get Lauren into a school. I needed to get some respite help. We needed to fix our house. A family mmber had a huge health scare, and surgery. My name was dragged through the mud by a stranger, and on top of all these things, I live with my daughter having Cystic Fibrosis and on top of that, special needs in all capacities. Life is full on.

I don’t even know where to begin. I’m stressed. It’s painful trying to just get on and do what’s best for Lauren and not let things upset you, because if they upset me, that reflects in my behaviour and I don’t want to let Lauren grow up with that. When no one will help you though, not how you need, and you call the social services complex children’s health needs team only for them to tell you they won’t help you, because you just need a babysitter, it’s hard. Having social workers lie about doing a proper carer’s assessment because parent carer’s are last on the list to give help to, it all just seemed a bit surreal. A HUGE eye opener that literally everything is about money. Everything. So I had to get my fight on. Send complaints and kick up a huge stink. 6 months later I got 6 hours a week respite. It’s something.

Our house was going to cost £25K to fix. It took 2 years from start, to going through so many different legal avenues to sue the dodgy surveyors, until they finally caved and paid for the work to be done. We then had to live through having all this work done. Pack up the house, move out for a month. Then start to put the house back together. Holy crap we’re still trying. Hoping to have it finished soon!

The school situation, I don’t even know what to say. It was a political fight and non other. Our situation was used and abused by the school so agenda’s could be met. But we got our fight on and got Lauren into the school we knew she should be in. She is there and my goodness isn’t she spreading love to everyone she meets!!! I love her. So very much!

We had a family scare. Someone was ill. Needed surgery. It could have been and was being treated as if it were cancer. By the grace of God alone, it was not. This kind of scare hurts. The possibilities of it were like a nightmare come true. It’s something that always sits at the back of your mind and weighs you down. I wouldn’t wish it on anyone. But they survived and are OK and were cancer free. Now I could cry at the sheer fear I had tried to keep deep down. Because that was petrifying!

On top of everything going on, someone decided to spread some real evil things about me. Others decided to spread the idle gossip, some of those people pretended to be friends. Luckily for me I have some awesome friends who squished the rumours, corrected those people and I had the opportunity to learn forgiveness. But this came at the worst time possible and could definitely have been the straw that broke the camel’s back. How on earth can anyone be expected to deal with all of this??

I live everyday trying to deal with Cystic Fibrosis in a child that can’t help manage it herself, because she also has special needs. It’s a monumental task. I think about things you can’t imagine.

But some of these challenges are now over, been and gone, onwards and upwards. Some of the challenges are here for the duration and I have to renew everyday to deal with it as best as I possibly can.

Give me strength!!!! ;-D