Author: April Birch

It’s uncomfortable for us to know the awkward, hard, challenging truths that others go through. We like sunshine, smiles, laughter, lovely pictures. We have lots of laughter, loads of smiles and plenty of lovely pictures in our home, because I’m lucky that through the struggles and difficulties, we’ve got a home filled with love. It’s also a home filled with disappointment sometimes because our lives are unique.

So are yours. I don’t believe some stuff I read and see. Because I know what it’s like to shout and scream because no one in the house listens.

I know what’s it feels like to be lonely and have my child invited no where by anyone and not have a ton of friends. It can physically hurt your soul to know we are forgotten. I know that people are interested in babies, and even small children, but the older lauren has got the less people want to spend time with her, It gets harder in many respects, but less people surrounding you to get through it. It’s something I try to accept. She isn’t anybody else’s ‘job’, she is ours.

I know what it feels like to have my husband be ill, at the same time as lauren and it be so physically hard to keep up with everything.

I often feel exhausted, too exhausted to even go and stick to the plans I have. I do them anyway so that I can keep in touch with the world.

Life certainly isn’t wonderful all the time. Awaiting operation dates, schooling unknown, where we will live, so many things weighing on my mind, some that I’ll leave unspoken for the time being.

I don’t get jealous of someone else life, I don’t believe anyone is always 100% happy- but I know if we focus on our lives, our families,  our responsibilities- then we can be full of joy even when we don’t feel happy.

I am grateful to have this time with lauren and try to fill it with fun things for her. Regardless of whether we do them alone or not. I am grateful to a husband who ploughs on through horrendous migraines because there’s only so much one human can do and lauren needs 2 super humans!!

im grateful I have a home, and wherever we end up, my 2 loves will be with me.

Life isn’t always peaches and cream, it’s ok to be unhappy sometimes, feel what we feel, but there’s always room to be grateful for what we do have. And real happiness isn’t a smile here or there, it’s finding real joy and knowing in the sad times that we are richer than we know.💜

I remember having the thought that Lauren’s baptism dress should be made from my wedding dress. It was a perfect idea. I didn’t want it anymore, couldn’t be bothered actually selling it haha! Sure I loved it, but I wouldn’t wear it again so what would make it special enough to keep? Having another amazing memory of it and more so having Lauren involved in that memory would make it completely and utterly perfect. That was one of very few genius ideas I have ever had.

So why are these occasions and memories important to me? Because I’m practical. The feelings attached to that practicality are hidden so far down in the depths of my brain right now, but it’s there. I want to remember everything.

Mostly I want Lauren  to remember everything. She LOVES pictures. She has a wicked memory and loves so many people. I want her to have memories of them. I want her to know she is loved so much by so many people. I want her to see people smiling because they are in her company, because they got to be near her, because they love her. I want her to see it over and over again.

I want her to have as many special occasions as possible. That doesn’t mean she needs a baptism or something as awesome as that was every month. Daily outings with people she loves and that love her are special. I want to document it. I want her life to be full even if she is stuck in a hospital room looking through pictures only. She will feel what she felt, see in her mind what she saw, and be as happy as she was on that day. I wanted to share some pictures here of her baptism and hopefully you’ll feel what she felt, even just a little bit. We had the perfect day as a family. It wasn’t actually perfect, she wouldn’t eat, we were rushed and she pulled half a head of hair out just in time for the pictures! haha!! But we did feel some pretty amazing feelings of love and gratitude and faith and hope and strength, and a whole lot more love from the people that came. Thank you so much if you were there and for cards, gifts etc. She is one very lucky little girl. I’m so thankful we got to capture lots of it on camera for her, and for us. Credit to Helen Rose for the pictures. Huge Dress credit to the extremely talented Deborah Singh-Bhatti! An angel!!

That dress is no longer a dress I want rid of. I will keep it forever and ever xxxx

What if you walked in to a room, with a child (yours or one you love a lot) and in the corner there was a loaded gun? You knew it was loaded, but the child only knew it looked like fun. You would NEVER let that child near it, and you would get the heck out of there pronto. You would then do something about it. You wouldn’t think ‘it’s OK, the odds are slim that they’d actually shoot themselves and die’, you wouldn’t think, ‘out of sight, out of mind’. The protective instincts within us means we would protect-then sort the issue out.

I walk into rooms and often see our equivalent of loaded guns. It’s true, they aren’t as visible to the next person as they are to me, a mum of a child with Cystic Fibrosis.

Cystic Fibrosis awareness week is getting bigger and I believe more and more people know more about it due to the press it gets.

Are you our friend? Do you think you know enough to try help protect Lauren? Chances are you might know a bit from reading or talking to us. Here are a few simple things that are dangerous to Lauren-enough that we avoid them like you would a loaded gun:

Sponges

Bars of soap (only liquid in this house)

Damp undried cloths (all are air dried)

Flowers, unless the water is changes daily

Bottled water (for Lauren)

Any bottled water machines

Hay

Straw

Mould/Damp places areas

Wet toothbrushes (air dried again!)

Bath toys that hold water

The list goes on. The bugs that she can catch from these things leave her poorly like she is now.

I’m currently watching my child wither away until her peg feed is fitted pronto. The medicine makes her sick. It literally keeps us awake at night wondering what else we can do. We can’t protect her from everything, some of these germs live in the environment. It’s scary. I always have this sense of time is running out because I have no clue what the future holds-it’s consuming.

We try to educate others, but I have realised unless you love her like we do, there will always be something you don’t quite remember whether it’s dangerous or not. Our minds have to be encyclopedia’s of how to keep her safe. We want her to grow old with us. We want her to have many more birthdays, and celebrations, and Christmas’s and enjoy more holidays. We want for her what you would want for your child.

CF week is about spreading awareness so that people who may come across another family affected by CF, may have a little more understanding, compassion and want to help protect from any unseen loaded guns that may affect the health of a person.

I do love when people ask questions-even the hard ones. I am willing to answer. I have information and if you would like it then just ask. This little girl has changed my life in so many ways I couldn’t possibly put it all into words. I am a better person because I am her mother. I am a happier person. I am more scared of losing something than ever before. I am more protective. I am more accepting of things I don’t understand. She has affected me more than a thousand lifetimes without her.

Please support ~#CFawarenessweek2017

Please wear yellow on Friday

And if you like, you can donate to the CF trust via their facebook page

We will keep fighting the good fight with this smile to keep our hearts a bit lighter than they would be without it

There has to be a time of reflection, especially for me. I’ve reflected on the run up to the recent issues with Lauren, and of course asked the ‘could we have done more’ questions. Every parent would. I’ve reflected on what to do from now onwards from the whole experience.

It has given Jonathan and I time to reflect on us and realise how much work we need to do to be stronger as a couple for the next time something like this happens. Unfortunately that could be within the next year of these treatments, who knows. What we do know is that the pressure is too much during those times and we have ended up coming last, which isn’t great for any marriage. So it’s time to put some time and work into that.

When you emerge from such an intense time it naturally comes to mind the people you really and truly can rely on in an emergency, or in a heightened time of emotion. People who will just let you be sad. People who understand that you have to get feelings off your chest and that isn’t always nice for others to hear. It’s a very short time of having to do that though, so those people who tough it out and let you, and just want to be around and don’t shy away from just being there-They are the people you should treat like royalty. They are real friends. They are people who love you beyond just being able to ‘say’ those words. There aren’t a massive amount of those diamonds in my close circle. Randomly it ended up being people sometimes that I hadn’t thought cared about us that much. By that much I mean-you know people care, but you really don’t know how much sometimes. From the last few months, I know who I would have by my side during a war 😉

It makes me reflect on who I am. That’s not always pleasant. I have much work to do.

We as a family have a new resolution to serve others more. We do have some serious concerns here in our family-they are real, regardless of whether people minimise them in their head because we look like we are handling it-these issues will define our lives, or at least how we deal with them will define us and our lives. But we don’t have the biggest problems in the world. Some people who are perhaps lonely will suffer far more than we do, we recognise that we are blessed and especially by having Lauren be our daughter. She’s magical. So we as a family will be kinder and more thoughtful and give back to the world, because it is nicer to focus on other people than it is to dwell on your own issues. So that is what we’ll do. There will be times that that will have to stop for a time when things are tough again, but I feel like a huge fog has finally lifted and it’s time to introduce some more kindness to the world.

It’s strangely made me reflect on what would happen to Lauren should anything happen to Jonathan and I. I’ve thought a couple of different times during her life that I know who would look after her and how it would pan out, but I don’t know. I don’t know who I would trust most to be as meticulous as I am to look after her the best and make decisions that would protect her and put her first and foremost. I have no idea who that is and I guess have some thinking to do.

It feels nice not to be in the pit of despair, it feels refreshing and like a bit of a new beginning. We will continue onwards and upwards and build upon our recent experiences in the hope we can do a better job of it next time round.

April x

The two weeks Lauren stayed in hospital this time around were perhaps the toughest two weeks for me that I have had in a long time, in any of my life’s challenges. I think it broke me. When muscles are torn and put under stress, they can repair much stronger. I hope the same of me, my faith, my love and my ability as a mother and wife.
Maybe you wouldn’t swap with me to deal with my issues, but as a lovely lady I met once said to a large congregation ‘I wouldn’t swap for yours either’ (Pat Smith 2001).

As a parent of a child with Cystic Fibrosis, I know my child was born with her death sentence. I don’t need anyone to tell me how precious life is. I don’t know how long I have her. Writing these things down always makes me cry because lets face it-that is as cruel as life can be. It isn’t information that I get to forget. Every day the thought pops up. I make sure it doesn’t get to stick around as best I can though because I try not to be robbed by negative thoughts and feelings, of my time with my Lauren. She is AMAZING. I need to actually be like her. I push negative thoughts away as much as possible because I want to enjoy her, and cuddles, and laughing, and that Yorkshire of Yorkshire accents ‘Mummy’!! hahaha!!! Oh man, I LOVE hearing that word come from her mouth. I want to plan things and help her enjoy every minute of her life. If that could be the case and the positive always win, then I’m sure I’d have no regrets later on.

It’s the every day things that weigh me down though. As soon as I’ve pushed one thought away, I have to get Lauren’s meds ready, or physio done, or arrange another appointment and something creeps back in to stress me out, make me slightly grey-er and give me more worry. It’s exhausting with all her complex needs in one. I’m tired. ALL the time. Jonnie is tired ALL the time. We are mentally exhausted, physically exhausted and then on top of that we had a two week stint in hospital with a very poorly Lauren to somehow deal with.

I can assure you, we don’t feel strong or inspirational. We cry, and get annoyed with each other….OK, it’s me, I get annoyed with him. We are doing what YOU as a parent would do for your child. Or spouse. Or a friend. The love you have for someone dictates what you will do. 

Whatever Lauren needs, we are there. We are answering questions constantly about her, our lives, having to put on a smile for yet another person entering Lauren’s ‘isolated’ room. I hate putting on a smile. So I mostly didn’t. When I get to choose who and where and when, and meet some amazing people, I am relaxed and myself and can be pretty chilled. When my space is invaded and I get no say in it, people just annoy me. The end. Yet here is my child next to me who smiles at everyone, captures the hearts of doctors, nurses, physio’s, etc. And she barely says a word. She signs thank you to everyone, the ladies changing the bins, the doctors taking bloods. I just want to scream at them all to leave us alone. You barely get to dictate anything including how much sleep your child gets, and somehow you have to be polite. Well I fail miserably sometimes. Thankfully I also know how to apologise

We barely get a minute’s rest, between observations, ward rounds, routine bloods, weighing, bins changed, cleaning the room, the teacher that comes to see Lauren, the physio sessions, the meds being brought in, the puking child, who also poos for england when she’s on IV antibiotics, meal times that got REAL fun when Lauren decided she was too ill to eat and we fought non stop over it, then visitors (the only bit of interruption you don’t ever mind) and before you know it it’s nebuliser again and bedtime routine and settling for the night, time to try grab some food so your rumbling tummy doesn’t wake the sleeping child.

I’m slightly exhausted just writing it. People were so so lovely-with messages of encouragement, and love, and support. People asking what they could do. I wish I had a list of things when that is asked because I know what it’s like to want to help. But really the only things people can do were done. Prayers, fasting from church friends, cards and gifts sent to Lauren that cheered her up non stop, visiting when feasible, bringing me something if I needed it-or chocolate cake when I didn’t need it but we always want it :-D. Some sat in whilst Jonnie and I went for tea so we could eat at a reasonable hour, or brought us food. Some people came and sat and were just bored with us!!

We are thankful-SO very thankful for all of those things and consider them all a real blessing to be surrounded by such people. There just aren’t words big enough than thank you, that expresses what we mean. But thank you none the less.

So what happens when a situation feels like it’s breaking you? I cried. I screamed. I went through the 5 stages of grief. I can’t believe this is our reality. It seems so surreal. I feel alone. I feel angry at God. I feel like no one is ever listening when I pray. I feel like the most precious thing I have is going to be taken from me and I’m Pi$$ed!!!!!!!!!!! What helps when I’m like this. Nothing anyone says. Lauren hugs me. She is the only thing that melts my stone cold heart. It doesn’t matter what friends say, you can’t fix what my head or heart think or feel. So just wallow with me for a few minutes. I’m not asking for your logic. I have the ability to be logical. I have rational thoughts every now and then. But I also live this life and feel all those burdens that you would feel if it was your child. Mostly, just love us, and especially Lauren because when she is with people and they are loving her truly, and she is happy and smiling and laughing, my hope returns and a glimmer of faith. All is not lost when you know you will be with this soul for eternity. I don’t know why I get to be her mummy, I don’t know what I need to learn. I’m just hoping I get a thousand more years with her until I’ve learnt it…….

We are hopeful this horrible diagnosis will be fought well and will do everything and beyond to help Lauren do just that. My personal wallowing is done, fight head on. Get up and get on with it. It’s all that’s left to be done.

Broken things can mend and it’s usually through some form of love. My love is Lauren Esther Birch and I would literally do anything for that little girl.

 (Lauren with my phone-“Mummy”-then hand gestures I move towards her in the car-and takes a selfie hahaha!!)

I was finding it so difficult on Wednesday (8th March 2017) as Lauren was due to go in hospital. She was due in for a few things to be done at once. She thought she was on holiday, so excited to go see the Doctors and nurses and other professionals involved. Seriously-I need her to share some of that. They do an amazing job, but as equally grateful I am for them-I wish I never had to see any of them ever again.

The anesthetist was named Ingrid, she was a lovely lady from South Africa and so lovely with Lauren. I find it incredible how much trust someone can instill within you when you have literally just met them, but she did just that.

My precious little girl was prepped and once in the CT room Ingrid popped a canula in Lauren-who didn’t make a peep-just watched as it was being done. I could feel the tears filling up inside of me, and once Lauren started to go to sleep on Jonnie’s knee I just needed to get out of there. I couldn’t physically hold it together anymore. It took me right back to that first time she headed to surgery. Everything is out of our hands. I hate that feeling. I broke down in the corridor after leaving her and needed to get out of that hospital. Equally after about 6 minutes out, I needed to get back in to wait for her.

She was in good hands though, and when we went to pick her up to go back to the ward with her Ingrid stroked her very very sleepy nose and said softly to her, “I think it was my privilege today to meet you Lauren”. I think everyone should feel like that. She is pretty incredible.

Lauren was extremely groggy after it all. She’d had a CT scan, a Ph Probe inserted to be there for 24 hours, a Broncoscope done and a bit of a wash out whilst they were in there, and a long line put in so she can have IV’s for the next two weeks. We got the initial results pretty quickly, some small scarring to her lungs, lots of infection and that we were to be in hospital for the next two weeks. You don’t get chance to really express emotion in these situations. You just have to kind of sit there, absorb it all, and try to process without looking incompetent to look after your child. We asked a couple of questions but the end result is always what is best for Lauren-that is what we do.

When Lauren is poorly, I often feel like I get the brunt of it, she’s mad and not smiling, crying, coughing and I feel helpless.

Later on in the evening as Jonnie and I had not eaten, around 10pm or a tad later she finally fell asleep. But in the lead up to falling asleep she was holding both our hands, one on each side. I don’t know why but I always feel less important to her than Jonnie, so I tried once or twice to let go of her hand thinking I should just sneak away she won’t miss me. At the first attempt, she clutched my fingers a bit tighter. At the second and third etc she kept looking up as if to say stop trying to get away, and grabbed my hand. I do my very best for her and I try my very very best to change to be softer and more loving instead of drill sergeant (someone has to be though right? She needs that drive in her?!) and I try to do everything in my power to protect her and be there for her. Sometimes through no fault of hers, I feel less than enough. That night I felt a mutual need.

I really need this little girl to be OK. I need her. She is my everything.

She is perkier today. Didn’t enjoy physio but all in all was lovely to be with. I miss her when I’m not there (only one parent can stay in so we switch) and worry and I’m a bit more relaxed when with her so I end up exhausted from worry and tired non stop.

However, we will get through this as we do everything else-looking for small moments of hope, and lots of smiles from Lauren to keep us going.

In all the years of seeing the medical professionals and many other professionals dealing with Lauren’s myriad of issues, nobody has ever and I mean EVER mentioned a Chiropractor. I knew they existed and I ‘knew’ they dealt with bad backs. That is all I ever knew until Oct 2016. I met Rick and Andy from O’Connor Chiropractors in Ilkley, at the Ilkley complimentary medicine fayre. I initially went to talk to them as I have aches and pains myself. I quickly got talking about Lauren with them and before I knew it had booked her in for an initial assessment with the chiropractor Jason.

I was looking forward to it, but even after meeting with Jason along with Jonnie and Lauren, we were apprehensive and probably slightly nervous and somewhat skeptical. How after not knowing any of this information for 8 years could someone be telling us they could help Lauren.  Could he really? He didn’t suggest he could cure anything, he told us he could definitely help with some tension, some posture, some balance and open up some pathways from the brain to body which in effect could help a lot of things. It did seem a bit ‘too good to be true’ and we had many discussions over it and even got in touch with friends who are chiropractors to see what they had to say.

Lauren was NOT happy the first time, cried for a few more times as this was something new and out of the ordinary-but as you can see her smiles say it all-   

She just lies there and isn’t bothered by it at all now and relaxes at all the correct times!

My still very limited understanding of what he does is that he adjusts her a couple of times a week, this releases some tension in her hips, back head and neck; this is to open up pathways for the nervous system to work more efficiently throughout her body.

Now you all know she is a complicated little girl and half her issues comes from the brain. If her brain could communicate more efficiently with her body-what would this mean?

I think we were genuinely scared to get our hopes up that this could actually help Lauren, especially since no professional, medical or otherwise, had ever mentioned that a Chiropractor could possibly help Lauren. That in itself baffles me completely now!!

DOES IT HELP???????   YES!!!!!!!!!!!!!!!!!!!

If you’re lucky enough to be on my instagram (aprilbirch)  😉 or my personal facebook then you will have seen in early January 2017 we videod Lauren standing up from being on the floor, from hand and knees, to hands and feet-then up she goes. It didn’t stop there-she then turned and walked to Daddy. Jonathan and I couldn’t believe the progress she had made in such a short amount of time. We properly started visits in Dec 2016. This was incredible. She suddenly had more energy, she became a bit of a ‘live wire’ and couldn’t sit still haha!! (Not always great 😎 ) and the only thing we had changed was taking her to these appointments and her seeing Jason. It’s the only thing that was different. Her balance has come on leaps and bounds, her desire and confidence to be free and walking alone has increased dramatically. The school staff are impressed, the Physio is impressed. Everyone who knows and loves her can see the difference. It’s incredible and I’ll say it again ” I cannot believe no one told us about it!!!!!”

The proof is in the pudding? Well my little pudding is doing great, and will be long seeing the guy who has added to this little girls quality of life.

Live in Ilkley and surrounding areas or Harrogate and surrounding areas? Have any health issues that no pills can help? Firstly-I bet I have a Doterra oil that can help 😉 Secondly it would be worth you looking into seeing Jason.

(his info can be found on facebook https://www.facebook.com/oconnorchiroilkley/)

From 2 very happily surprised Parents and 1 well adjusted little Lauren xx

Hahaha! Oh how I wish some days I could lock us in the house, speak to no one and live a very bland, uninteresting to the naked eye kind of life and just…be!

Other days I love that we get to get out of the house finally and see other humans. Continue reading “Quiet little life” →

Today we went to hang out with my cousin and her little boy on her birthday. We were excited, Lauren is always excited to hang out with others, especially those she remembers 🙂 We went to pizza hut, and she loved Caleb, especially his luscious hair haha (poor Caleb)!

The thing with being out and about with Lauren, as you may know if you know her, is she attracts all kinds of people and their smiles and hello’s and waves, and she is purposely looking for others to smile at and have them smile! It really is a completely different outlook on life to mine hahahaha! Where did she come from?????? Heaven, that’s where!!

So after food, we wanted to go to a park and there’s a great one with sand near where we were. So off we go. She loves watching Caleb running, and is extremely excited by the park, but ESPECIALLY by the sand. So we sat on the edge, and she starts playing in the sand and is in her element. Caleb brought her a spade (he’s very cute) and she was digging away.

As always, I notice my surroundings a lot. I pick up on who’s around, the conversations sometimes, making sure I’m not vulnerable in any way ( I like to think I should work for mI5 😉 ), and I always like to notice if possible if people are looking at Lauren (I watch TOO many cop shows!).

Today there were a couple of children, one who asked us ‘who’s she?’ haha as if he’d know when we said her name bless him. We responded anyway. Then I noticed a couple of ladies at different times looking over and smiling, couldn’t tell if they were together or not to begin with.

Then at one point another lady was walking over and at first she was looking so intensely at Lauren that I thought maybe the spade belonged to her kid or something, and she said something to Cassy, who was in the middle of the whole ‘mummy I need a wee’, so then she repeated it to me:  ‘Can I just see her for a minute?’. Unsure whether or not this lady had additional needs I immediately thought of my older sister who does and thought I’d want people to be kind to her, so I responded ‘yeah, sure’. She knelt down in front of Lauren, and asked ‘what’s your name?’. I responded for Lauren ‘She doesn’t talk very much but her name’s Lauren’. She then said, ‘I saw her get really excited when you came in’. So we exchanged a few words about parks and sand and Lauren’s love for it all. Lauren waved to say hello. Then Susanne (the lady), said to Lauren ‘It’s hard living with a disability isn’t it’. She then said it to me, and I couldn’t say anything to start with, I had to think. Yes, it absolutely is, but then this bundle of joy in front of me, for those moments I was living there and then, it wasn’t too hard. She was enjoying herself, we were at a place she loves, life was good (belly full of pizza!!!) and for a moment I realised for us that yes it is hard, but we get a glimmer of sunshine like now and I feel at peace. I gain so much from Lauren. I get to have fun. She’s so easily pleased. I’m grateful for moments that make us forget how hard it can be. I did respond ‘yes, it is’ to Susanne though, because the reality is of course most definitely hard for most with disabilities.

I’m also grateful for sweet people like Suzanne. She had returned to her group, who were some of the ladies I’d seen earlier looking on and smiling, and as we were getting ready to leave, she shouted as she was walking over ‘Lauren-are you going?’. I told her it was time for us to go, and before I know it Lauren’s arms are widespread ‘Do you want a hug’ says Susanne, and they’re embracing. Lauren got to spread a little more love and joy, but equally so did this new friend of Lauren’s, Susanne.

I can’t take her anywhere anonymously can I haha!! I’m learning to love these moments, and enjoy learning along our way.

A xxx