Author: April Birch

Ever since having Lauren, it’s been a great few years to realise who my actual friends are, including the family members that are more than just blood related.

This sounds harsh possibly but the sifting has a two fold. Firstly there are people that just can’t cope with addressing the issues in front of them, any disability or illness like Lauren’s-they don’t know what to say so they stay away completely and this process was hard for me to handle. I didn’t do anything, how come some people just don’t want to be around. Well, I have learnt that not everyone can handle such things and that is an issue for them, not me. Try not to take it personally. I’m trying.

Secondly, I have had some horrendous things to deal with. I’ve been angry and hurt and broken. Sometimes I have reacted more strongly to situations because underneath the surface I am struggling a lot. Those who do not know me well, or cannot be bothered with me have taken offence instead of trying to love me no matter what. We all have problems. I don’t always dwell and wallow on mine, but people just not wanting to find out what is up because  “we all have problems, get over it” kind of attitude have really pushed themselves away from my friends circle all on their own, rarely will people make it back in.

There are those people who from the word go have asked all the questions, stayed up to date with all of Lauren’s complexities and care how I’m feeling enough to want to help. People who will call and just let me rant, people who will send me shopping via online because I’m stuck in with a poorly Lauren, people who create situations that we as a family can go and enjoy, people who want to do anything that will help even if it includes wrapping all my Christmas presents for me. There are people who know enough that they could take care of Lauren at the drop of a hat. Some friends just have one quality that they radiate that lets me know they love me, Jonathan and Lauren. Others have many. It isn’t a competion and I don’t mean to sound like that, I honestly do treasure them all. The point I’m trying to make is that my friends care. Enough to not be put off when I’m angry because life is not fair, and enough to dig deeper. If you don’t know me well enough to do those things, there’s no place in my life for you.

Some family members have happily put themselves in those categories good or bad. It’s hard for me, because I’m only human and at this point in my life things have hurt a little more than they should. But it’s all teaching me things about myself.

I try to be a better friend because I have good friends. I try to be less selfish because friends (again I’m including my lovely family in this category) have been completely selfless at times. I want to be that kind of person!

The sifting them out process is hard because just because of someone’s flaws that they can’t necessarily help, I shouldn’t write them off, right? But I have to be a little harsh because I have enough things around me that can hurt so friends who really can’t be bothered with me really need to be cut out so I don’t continue to be hurt unnecessarily. Even though I’m a hot head, and struggle with my tolerance and patience levels, I do have some amazing friends (and yes, family). I have a very special circle of people who do love with all they have.  Those who no longer belong to that circle, I do thank them for all they brought to my life before we parted ways.

Some friends are for a season of life, some last forever.

Not being too hurt by that fact when that happens, is they key ❤ xx

This man….

We have had some very tough times. We have also had some very tender times. We’ve had some of the happiest times of my life together, and the fact that we’re still together may confirm miracles actually do happen. I don’t know how we’ve come through it. Well maybe I do.

Jonathan deserves every bit of respect and love and devotion a wife could possibly give. I haven’t always given him that, but he deserves it.

Jonathan isn’t a typical man. I often hear women complaining about who or what their guy does or doesn’t do. 99 times out of a 100 I have to disagree because Jonathan is quite amazing and doesn’t fall into those categories. He is domesticated, he does his fair share of washing, drying, washing up, general upkeep of the house. He does more than his fair share with Lauren. He has done from the very start. Any appointment he can come to-he does come to, even if this means he has to work earlier in the morning to make some time up. He is my confidence that we can take such good care of such a complex little girl. I don’t know if I’ve ever told him that.

Jonathan deals with things like a mathematician. He sees every situation as a problem, good bad or in between. And he compartmentalises these problems, usually very quickly. He can either do something about them, in which case he gets on and does something about them. Or he thinks it over and if he can’t do anything about the problem then he places it in a little tiny box at the back of his head and that’s where it stays. There is rarely (I’m still to see this) a middle where he might have to talk something over, or mull it over for a while. This isn’t a bad thing, I’ve just realised that this is indeed a man thing ( broad generalisation I know). I’m not talking every man, they at least have to have a brain, so that cuts out a good number of them 🙂 . They also need to have a heart, so there goes another chunk. Leaving about 20-30% of men. My opinion is that only about 15-20% of these are good men. Jonathan lies in that category. He is a good man.

We are however, from completely different planets!

But that’s OK!!

I have felt more deeply the hurt and pain from being told all of Lauren’s issues than Jonathan. I have felt so disconnected from everyone, but more so Jonathan. I’ve lived in a very lonely world. We have very seriously come to the point, only twice, in our marriage where I have felt it would be better to be alone. We have had fights along the way, I mean he’s married to me! But when I think normal people would have perhaps called it quits because it’s just too hard, Jonathan will not call it quits. He fights when I’m all out of fight.

Thankfully at the point where it’s just too much I talk, to Jonathan, sometimes my mum, and one of my friends. Jonathan has reacted with love mostly. He has done his part to fight to open up the communication pathways and make sure that his family stayed together. He has listened to what I needed, and if he can give me it, then he honestly does.

I try to do my part. You would have to ask him if I manage it.

Statistically we probably shouldn’t be together. Couples with children with special needs or life threatening illnesses do struggle to stay together. We are contending with both. The emotions are high, most of the time! The stress levels never seem to simmer. The strict complicated routines only seem to get worse as Lauren gets older. Respite is not easy to come by.

I don’t suppose it’s uncommon to find that within a marriage these things cause friction. We are stronger than these things though. I believe that. Having come through the other end of 2013 and early 2014, I believe we can survive anything. This is not an invitation haha!

Jonathan is quite literally the only man in this world for me. He’s incredibly kind, and thoughtful (in a man kind of way 😉 ), he’s intelligent but so humble with it. He’s a great teacher, helping people is no chore for him. He is patient. My goodness he is patient. He is so caring with Lauren, seeing her beauty and personality through all problems and loving her so unconditionally. I don’t know a more genuine person than this incredible man.

He calms me down, he reassures me, he gives me the security I need to know I can be who Lauren needs me to be. There really aren’t any words that describe my love for him. He is my everything and I only hope we have many many more years and adventures to come to add to the tapestry of our lives together. I know what happiness is, but because of Jonathan I also know what pure joy is. I love you Birch xxx

When Lauren was very little her differences weren’t quite as obvious to me. I could carry her around no problem. Feeding her soft foods didn’t seem such a huge deal. Pushing her around in a pram still felt normal. Luckily when dealing with special needs (but this can be just as bitter sweet), not everything hits you at once. There are stages just like life with any child. My experience with it is that it comes in waves. Some are small, you feel them but they don’t leave such a mark on your heart. Others come so hard and fast and sometimes unexpected that they knock you over. They hurt and you can’t shake it off.

When Lauren was diagnosed with eye sight problems it knocked me over. It gets easier over time, and the fact that she’s doing so well with her vision helps. But I can feel those waves as if it was yesterday. I don’t compare Lauren to other children. I made that promise to myself for her a long time ago. This helps. In fact, I think it’s almost nice that she already has glasses when someone else gets them, and she can have that in common with them. She points to others’ glasses often, she relates.

When Lauren was diagnosed with Cystic Fibrosis, the wave came small, and kept coming, and suddenly there was the huge one. What the Hell just happened kind of shock wave. I cannot shake this one. It is my biggest mountain. This one will one day take my daughter away from, if statistics are anything to go by. This one I feel like I’m stuck in. It is so unfair 😦

When Lauren had to get Orthotic shoes. A relatively small problem, all I could see were the other children around in pretty shoes that matched outfits, with straight feet and the options of wearing and walking in what they want. She has so much to deal with, it’s just getting beyond a joke now, right?! This small ish problem still feels like a mountain to me-yet sounds ridiculous!

When Lauren doesn’t get to play with other children. She doesn’t understand that it’s too boring for them sitting and playing instead of running around. She doesn’t understand social cue’s and why others are a bit anxious, or wary around her. She desperately wants to run and play independently of adult supervision and join in the games. I think this comes second only to the CF for me, it’s so hard to watch. I have to remember children need to go play and do their thing. But I find it heartbreaking when in meetings at Nursery I’m told she has no friends. The truth is, upon leaving nursery she probably didn’t have any. Her cousins try but often leave her when they’re all together and forget that she just wants to be included. I have to remember this is just children. I try to leave situations now that leave her feeling a bit sad. I see it in her face. It hurts me to see, a lot.  I’m waiting for that special friend to come along that will be interested in her, love her, want to help, but more importantly want to play and be her friend and include her no matter how much patience that that might require.

Lauren went from having a normal pram, to having a pram from wheelchair services. It was a bigger pram, I liked it actually. She wasn’t big enough for a wheelchair at the point of getting the pram, so this was OK for me. If people were alert enough they would recognise that the pram was a bigger one, as was the child occupying it. But for the most part, it was just a pram. The wheelchair however, came when Lauren was 4. She was getting too big for the pram, but we needed something to push her around in. Because Lauren couldn’t walk. This hit me again about this time. Like a punch in the Stomach. I stayed upbeat, I didn’t want and don’t ever want Lauren to feel that she disappoints me in any way, so I stay upbeat and try to make things exciting. I let her choose the colour. She chose sparkly red. She seemed so proud of her new chair.

Life was getting too much for me. I didn’t have a good coping mechanism. There were very few people that actually had my trust enough for me to talk to them and I just kept feeling like there was just one more thing and I’d surely break down, but they kept coming and I kept trying to stay strong for Lauren.

For kids with CF, we were told it is better to keep them home away from baby groups and such at least until they are 2 years old. Too many germs around and they are vulnerable. This was OK for me, I’m not a huge fan of socialising with other mum’s and children. In all honesty I either take to a child or I don’t, more often it being the latter. I’m not very maternal at all and I hardly ever ask to hold the new baby. I don’t intend to be offensive with this, it’s just me. I’m not rude about it. I just stay away from kids if I can. So I was happy to have an excuse to do just that. It would have been too much anyway with getting my head round everything and then possibly having to listen to other mum’s gush…..erm, no thanks! haha

We had some home visits from a baby massage therapist, and Visual Impairment(V.I.) came out, and serco (brad education in charge of special education etc have a section to deal with young babies and children, I don’t remember what Serco stands for though) sent someone to do portage (kind of home learning for those with special needs-to get things started early), this was far better for me. We had an amazing lady called Jane greenwood, she was from V.I. but did portage as well. She was an older lady, and by the time Lauren was 2 she retired, but she’d been just what we needed, she came and played, and brought new ideas and information and just listened to whatever I needed to chat about.  She was amazing. We miss her. But her replacement was a lady called Joanne Watson. She is also amazing. She was just as full of ideas and information. She carried on a tiny group every other wed afternoon for kids in the area with V.I problems. To be fair, Lauren was the only child to go. But it was at Strong Close Nursery School and Children’s Centre, in Keighley, and I loved the crèche we got play in. So did Lauren! So it was a nice afternoon out. We started this I think just before Lauren was 2 and carried right on till she was 3 & 1/2.

Whilst we were at these little afternoon’s, I became more interested in the actual nursery and started to wonder if I could send Lauren. I’d always said I wouldn’t until she was school age, but it was very apparent she loved the different scene, and people, and so I thought it might help her. So I was brave and applied for an afternoon space for her. It scared the hell out of me. I’d kept her as close and safe as I could humanly possible. It was a big step for me. Big!!

I had a meeting and with the Senco (Special educational Needs Co-ordinator) and asked if I could start her with one afternoon, building up slowly because of how tired she would be, this then affects her reflux, and also for me because I couldn’t and wouldn’t send her for 5 afternoons straight away. It was scary for me, so this was my deal and the only way I would do it. Lucy Fox agreed. And so it began. Lauren LOVED it. She loved going, the children, her one to one. She was in her element. I took a bit longer to adjust and trust. The staff were really good though. I couldn’t fault them.

She built up slowly from just Mondays to Monday and Wednesday afternoons. We then added Tuesdays in, then Thursdays. By the time she finished her time she was up to the 5 afternoons and I’d slowly grown to love them and my space more than I ever expected haha!! She found her little bit of independence and so did I!

Knowing what we knew about Lauren’s neurological problems and what that might affect, when she’d gotten to 16/17 months old and still not taken weight on her legs yet, we knew this was going to be a tougher area for her. Heartbreaking really but what can we do about it?! I always made sure I was on top of things with physios’s and the other people involved with Lauren and this was no different. Bridget is an amazing lady. She does her job and does it well! I always felt she left a bit of leeway for parents, to lead her in which way they wanted to go and how they wanted to deal with things and a bit, sometimes, of when they dealt with things. I personally felt I didn’t have time to wallow, how could I give Lauren the best chance at walking if I was too busy wallowing. I couldn’t so I just got on with it and quietly tried to get my head round things.

We first started with the standing frame. This was to help Lauren understand that she had legs, and that she could use them to take weight on. 

She didn’t particularly love it, but once she was in it daily, she simmered and got on with it. She had a tray on it, and under the tray a bowl toys could go in. We played with her, gave her attention.

Slowly she started to straighten her legs for a few seconds and take her weight. Not huge amounts but she was obviously creating the pathways in her brain to know what her legs were for! This was great news for us.

Once she had had this for a few months, we went to the CDC and picked a walking frame. Lauren didn’t take more than 1 step by herself in the frame. She wasn’t that interested in it. She could kind of hang on it and be lazy so that’s what she did! I would very literally be on the floor behind her moving one of her feet in front of the other, then say ‘Lauren stand please’, she would then straighten her legs and take her weight and be stood up by herself. Then she would drop back to just hanging on! We used our Church building to do this practise in, because our home wasn’t suitable, but we went every day. (95% of the time!).

She did pretty much take it all in her stride. This cute little red frame became her new toy haha! I would say it took her about 4 weeks of me doing every step of the way for her, to her standing up and walking off. She had no control over speed or direction but her little legs didn’t half move haha!!! When Bridget came back to see us, he jaw actually dropped. This perked my spirits up no end. There was a HUGE amount of hope here. She would one day walk. I knew it. I just didn’t possibly realise how long this might take

Lauren practised in this frame for months. Maybe about 4/5. She got no better at steering in those months really haha! She didn’t care one bit, but she built some muscles up in her legs, and she found a little bit of independence. It was hard work, and a very very lonely path for me as an individual. A loneliness I haven’t felt in any other way. A great responsibility lay on my shoulders. And that was pretty scary. Family helped a bit, but didn’t understand how much I needed them to come and just be with us at church whilst we practised, and those that did, couldn’t commit to helping us very much.  I got used to it being just me and Lauren. I suppose in a way it gave me a reason to get up some days.

I hate myself for how frustrated I would get with Lauren sometimes. The desperation in me that she would learn the next step and conquer this. I expected too much and got cross when I really shouldn’t have. I would have a do over at this bit if I could.

The next frame, although picture less to show you, was the hardest step for me as a mother. We had a horse shoe kind of shaped frame, on one side the front was just a gap, her arms were strapped to either side and her whole body otherwise was unsupported. The reasoning behind this was to next strengthen her core. Her legs had been strengthened somewhat and now she needed her mid rift doing. I did sit ups with her, and we did this frame a lot. The problem was, Lauren really did not like being restrained. She hated this frame. She would only have to see this one and she would start screaming. It tugged at my heart strings quite surprisingly for me. But I knew that without this step she wouldn’t progress. So we did it. She mellowed. and with my help to keep her core straight to start with, eventually she was mastering this one. This was a major milestone for me. To be rid of that flippin frame! haha! We had this one for a few months again. probably in total about 10 months between the first two.

The next stage was picking what i call a zimmer frame because I don’t remember what it’s actually called. There are ones like old ppl’s zimmers and ones that you pull along behind you. I knew instantly which I wanted for lauren because I knew her laziness needed the front pushing one. The ones she pulled behind her gave her something to lean on, and that wasn’t going to help her progress. So I chose the Zimmer. Lauren didn’t quite understand that she needed to hold on, or steer, or move. This was hard work for her. And she let me know it. I didn’t feel too bad here though because I could see what was next and knew she would flourish if she just worked hard and mastered this one!

It was hard work holding her so she didn’t fall, making sure she kept holding on, trying to steer and keep the faith that one day she’d do all of this on her own!

This picture was taken about 3-4 weeks after Lauren first walked down a single corridor at church by herself, with a little steering from mummy. What a proud day. March 3rd I believe it was 🙂

It took over 2 and a half years from first standing upright in that standing frame, and over 2 years from me kneeling behind her in that red frame.  What a journey. and it still isn’t over. She is a whizz on her frame now. Steering for the most part, holding on and knowing she needs to to be safe. She uses it at school to get around. But the real goal is seeing her walk independently without it. She has taken steps between adults. She is getting steadier. It is exciting to be on the cusp of seeing something amazing. And we will continue putting as much work into it so that she can achieve her fullest potential…..

WHO knows what that is!!!!!!!!! 🙂

As time moved on and Lauren ‘should’ be doing a few things that other children could do now, but she wasn’t doing them. Like talking, crawling, walking, interacting with each other. She did interact with others but not like her age children did. She bum shuffled, but really didn’t know what on earth her legs were for. She didn’t talk except for the word ‘ey’ at this point. It started to sink in how different our lives were going to be. Even looking at what my sisters life is like who has special needs, physically she’s OK so there are fewer barriers than those who are disabled. I got quite down realising life was not going to be anything like I’d imagined at all. Slowly I felt like every dream I had I was beginning to realise they were going to stay that way. She might not ever talk or walk.

I can think back to a hospital visit about 9 months into Lauren’s life, and I was walking down the corridor with Lauren and mum had come with us. We were going to X-ray. I hadn’t researched anything at this point. I turned to mum (who had researched everything that was up with Lauren’s brain), and I asked her with a quivering voice, “mum is there something up with her that means she won’t walk?” She responded with a look in her eyes that I’ll not forget. A sorrow within her, “possibly April, yes”. I cried but tried to hold it in as we had to return to the doctor after the X-ray.

There was a very long road ahead and I couldn’t see a bright light at the minute. It was a gloomy road and my babies life was full of uncertainties. Life really wasn’t fair.

Accepting these things happens in two separate chapters, or at least for me. Firstly I had to mentally accept my job was to help Lauren exceed expectations and have a full life. But beneath the surface with a very broken heart the second part is much harder. It’s reconciling within myself, in my heart that I’m going to do everything I can to feel OK about everything and make sure we’re happy. That one is much harder, longer and I’m still working on it. That one is a process. Little things can knock you back within this process. They can even knock you back daily, but I keep on trying.

It helps that I have such a strong, determined, peaceful and happy little girl. It also helps that I do have a perspective that includes a life after this earthly state. I honestly do believe that this is a short part of our existence, so understanding that one day all will be OK, also helps lift my spirits. It doesn’t take away what is now, reality, it just comforts me.

Lauren’s first bout of pseudamonas hit us when she was 18months old. When cough swabs are taken each clinic, they are then sent off to see if cultures grow anything bad. The phone call for this came 2 weeks after we were in clinic. Dr Lee called a wednesday morning and gave me the bad news. She was to be admitted for 2 weeks IV antibiotics. This was about to a very long 2 weeks!

I cried and cried and then let everyone know. I cried some more. Hospital and Lauren have some bad memories attached to them so I probably got a bit more weepy than was necessary but I couldn’t help it. I was sad.

The week Dr Lee had called, Lauren had started being unusually unwell. With a bit of a cough, but the 24 hours before the call she got worse and we were due to call for advice anyway. She threw up all wednesday and thursday night. Just sputum. No real food as she wouldn’t keep anything down. So this all made sense really.

Once at hospital they tried to put a ‘line’ in her so they could administer the IV’s. This was no fun to watch. They’d given her a drug that sent her dopey and when it wore off she wouldn’t remember anything.  Lauren is a far better patient than I am watcher. She takes pain so well and barely whinges. Most of the time. Which is something special to watch. But I don’t like having to toughen up and watch needles going in my child. However I think this has made me a bit too tough in some situations.

Once the line was in IV’s began, and Lauren started peeing for England, and the other end started being like water. So much fun haha!!

Hospital life is pretty boring, literally nothing to do, some toys, play time, but mostly sat cuddling doing absolutely nothing bored out of my brain. Jonathan went to work again during the days because he works so close to the hospitals and it didn’t make sense for us all to be bored!

Some people came to see us, not many at all. Some let us down and said they would but didn’t. Not normally as annoying as I found it during this very long two weeks!

About a week in, Lauren caught the line in her leg and pulled it out. Which meant she had to have another put in, in a vein in her groin. She had to have it done by a surgeon. We got to take her up to the room, and I put the mask on her face this time and held her till she was sort of knocked out. The surgeon was a big ginger ass. I hate him. Rude and arrogant and I was not happy that my baby was under his care. I had no choice though so we waited to be called. She had been starved all day long this particular day and so when she woke up and came back to the ward, she threw up and had a temperature. She was screaming and I was getting more and more agitated. The man nurse wouldn’t give her ibuprofen, telling me he knew best because he’d done the job for 18 years and ibuprofen can make CF patients chesty. I told him I’m her mum, no doctor had warned us of that and I’d been giving her it since she was tiny and it worked. I really didn’t like this bald loser either. I know best, I’m her mum and anyone who didn’t respect that didn’t have my respect.

We finally got her settled and to sleep and we went back to Dave and Hannah’s (angels!).

The next day we arrived, and the same man nurse told us that in the middle of the night they’d had to give her ibuprofen and amazingly (ass) it settled her. I did want to hit him. Even more so because we’d arrived at 7am and he’d already tried feeding her. She threw up on him. Good girl. She needs omeprazole first thing, then to wait about 40 mins to an hour before food. What is hard about that?!?!?!

I should clarify, I did try staying with her for one night. But all they have for parents is some plastic cheap recliner that didn’t recline properly and I got no sleep. This doesn’t bode well for me in any situation. It certainly doesn’t when I’m surrounded by people who think because they’re nurses or surgeons or care worker suddenly know your child better than you do. I wanted to punch more and more people during this stay.

The new line was working fine and covered up by clothes so she left it alone. She was getting stronger and better the more we were there but I could not wait to get out of there. Towards the end of her stay we arrived one morning and she was in clean clothes, clean dry nappy but her bed was soaking wet. A nurse had changed her, but not her wet bed, then put her back in it. Seriously! The simplest of jobs and a professional thought this was OK to do? I was fuming and I did complain.

I’m done being polite. I just want things done right. I got to hospital at 7-7.30 every morning and didn’t leave until she was asleep. I did everything and the competent nurses understood to just leave us alone. The idiots annoyed me still but I let them know. Mostly a god job is done. But if you don’t have people skills you should NOT be a nurse or work with people in a hospital!!

We went home after 2 weeks and had another 3 months of Ciprofloxacin oral antibiotic and colomycin nebulised antibiotic. Watery pooey nappies for 3 months! The good news though-within those 3 months she tested clear of pseudamonas. Phew! It was all worth it. I’m sure I aged 10 years, but it was worth it. She was clear of a very dangerous infection.

Back to our version of our kind of normal. For now!

Normally, Jonnie and I going anywhere, being around anyone (within reason) wasn’t a problem. I’m fairly sociable with those I want to be around. The world isn’t a scary place. I wish I lived in a non scary world still.

Now, especially when Lauren was very little, I sort of had a panic and started being completely OCD about where we went and around who and I went a little crazy with it. The reason?? The dreaded CF!!!

Now when we went places, I think things like this; have I got her bag, meds, creon, food, fruit for creon, spare pair of clothes (she vomited A LOT!), how long till I get there, does she need meds before so it works out time to feed her when we get there. We’re here, can I see any vases full of water, flowers, that water needs changing, anything else holding water, who was that coughing, are they sick, do they look ill, who’s sniffing, if they have a cold Lauren could get it, that could lead to pseudamonas, that could lead to lung damage, that could start the process of killing my baby, I need to get out of here. My head spun everywhere we went and I was completely anal about anyone sick coming near Lauren. Things panicked me like they never had before. And the worst bit?! It was all real, possibilities that would start this horrid disease being able to conquer Lauren’s body.

I have to have my brain switched on always, making sure meds are up to date, make sure I read through my diary to not miss any of the 40-50 + appointments in the year.

I also have to constantly be aware of everything about Lauren, because not only was she still baby like in most ways, but things like blocked bowel are a possibility so if she didn’t go in 48 hours we ended up back in hospital. Any cough that wouldn’t shift in a couple of days, we call Docs, they prescribe something new and we keep a close eye on her there too. everything was so hard. It still is hard.

I do remember thinking not that long ago though, how incredibly lucky we are to have such a system as the NHS. All of Lauren’s needs and some were immense, were treated and she was being looked after by some amazing people. I signed up for all of my part. I didn’t know it at the time but my philosophy is, she is my child and all that I can do, I will do to make her safe well and happy. So I try to just get on with it because being her P.A. isn’t such a bad job after all.

I get to spend lots of time one to one with her. I get to watch her soak in the world. I get to see her spreading her joy and saying hi to everyone. I’ve watched her have melt downs and hate the examinations and I get to comfort her and tell her it’s all OK. I have a very different role to the normal mother role. 

I’m a carer first and foremost because all the things I do are to care for her Conditions and secondly I get to be mum. I don’t get to forget any of her needs during the day without consequences. It keeps me on my toes. I don’t get to sit back relax and just take it easy, because I also have a home to run. I stayed pretty delicate where my feelings were concerned for a long time. I’m still delicate, but not nearly as much as in her first few years.

I do see life as unfair. There are some really bad people in the world. And bad things don’t always happen to them. I wish they did. People should see Karma a bit quicker as far as I’m concerned. My lieelt Lauren is one of the best. Yet she suffers. She has gotten to the point where she hates Meds, and her physio and yet I just can’t not do those things. It’s so unfair. I get it. I think. Trials, obstacles, problems, they all make us stronger if we let them. If we learn to look past them we can even find joy around them. it’s so hard to do and it’s a daily struggle to do. I try. I don’t always succeed, so I will keep on trying.

Lauren’s first year dragged. I mean depressed, angry, up all night nearly every night dragged the bottom of the ocean, kind of dragged. I felt like I was being stamped on left right and centre and needed help but no one really knew how to help. It was a long long year and literally turned my entire life upside down.

Lauren’s first year also flew by so fast I could barely catch my breath. The contrast unbelievable. A good friend of mine recently said that from the outside looking in on parents of children with complex needs, it looks like we’re on a roller-coaster and have no option of getting off. It does feel like that. Battered, bruised, some enormous lows, some highs that by far out reach the lows. The year is a blur in my head and I regret that I possibly didn’t enjoy Lauren as much as I should.

We took Lauren on a few holidays that year, Firstly Centre Parcs, Tenerife, Isle of Arran, Perth in Scotland. We travelled to London. We made sure we had breaks from the normality of our now non normal lives. We made sure Lauren had experiences. Saw outside, swam, breathed in fresh Scottish air, we loved travelling with her.

So on her Birthday I wanted it so anyone and everyone who loved her could come by so had an open house. We had so many visitors who loved her, she got so many gifts and we felt very loved as a family. She had stayed relatively well in her first year and we just wanted to enjoy her Birthday, and that we did!

We started the year out with the CF team being involved in our lives. We saw them weekly to start with, slowly going to 2 weekly, then 3 but never got more than 4 weeks away. We had Doctors, the CF specialist nurse, the dietician, the physio, and we saw the nurses in clinic too. We then had ophthalmology involved, we quickly had the genetics team involved, then the CDC which included the physio, speech and language therapist, the occupational therapist and the community paediatrician. we also got referred to neurologist dept. As well as all that Audiology decided they would like to keep an eye on her as well. I mean why the hell not!!!!!! I had, I’m pretty sure, weekly appointments, because we also had our health visitor and own doctors check ups with her. Plus vaccinations. Plus I’d just had a baby so had to have a couple check ups post hospital since it was c-section.

To say I don’t like people, well, that is what you would say if you knew me!! haha!!

I felt like my punishment was upon me with all these blummin people I suddenly had to converse with and didn’t have a choice since it was for Lauren.

I quickly found my style, I liked blunt to the point, hard working, know there stuff, no sugar coating, and no hidden agenda kind of people.

I came across a Dr that wasn’t the latter, so I made a few phone calls and sacked the witch. She lied to us and had the agenda of primarily wanting to find out how and what caused Lauren’s brain malformations so she could have that under her belt. She went behind my back trying to get Jonathan to agree to letting Lauren have a lumbar puncture to fulfil her agenda. What a (insert choice of curse word here) ! When she had asked me, I told her no and that I was going to ask our Genteics consultants opinion on the matter before changing my mind. She did not like being told no!! She told me that the Genetics Consultant wouldn’t know what she was trying to do because she’d discussed it with neurology and they would be looking for different things. So I rang Genetics Consultant Angus Dobbie (what a guy!) and told him what tests she wanted to do, asked his opinion on them and told him what she’d said. He replied that he was in the meeting with neurology and they decided the tests together. So he didn’t know why she said what she did. So I asked him how important a lumbar puncture was and he said it was one of the last options when everything else might have failed to give answers so don’t worry about it now. So I was really glad I’d told her no. I now despised the woman and my baby was not going to be looked after by her. So, we sacked her and now see a wonderful Doctor, Dr Bowring. She is lovely. Helpful. Kind. And seems to actually care about my child. She left the research to be done by genetics as well!!

Only recently (2014) have I come across another professional I cannot cope with. We have also been able to change who we see here but that one will remain nameless, profession and person! 🙂

To say my head spun sometimes was an understatement. All this was on top of living every day with the issues at hand!

Take a breath, and concentrate on the smile, April!!