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You can grieve over different things in life. It isn’t always losing someone. And you go through the different stages. I know this because I have felt all of those things where Lauren is concerned. And even added some stages in haha!! Denial, Anger (I sat here for a while), Bargaining, Depression & Acceptance.

I flick back and forth and sometimes don’t know where I’m at.

With Wyatt’s diagnosis for some reason I seemed to have convinced myself I wouldn’t feel as devastated or hurt. I have no idea why I thought that. It’s every bit as upsetting and hard and I am somewhere between anger and depression. I am also in a place of love though- it all comes from loving him.

A couple of weeks ago a friend had said she’d do some photos for us, and so when Wyatt was 8 weeks old during Laurens half term we booked a day where we could go get some pictures taken at a local park. In my head I knew what I wanted each of us to wear and where the pictures were to be taken and all I’d hoped for was a glimmer of something happy during a pretty rough time for us. I’m sure many of you can resonate!

The morning arrived and we all leisurely got ready. And it came to dressing Lauren. I’d left some of her jeans that fit her but don’t make her look too skinny on the living room floor (safe and sound as Jonnie rarely moves clothes from the floor 😂) all ready so I could get her dressed. I tell Jonnie this and he says- oh I put them in the wash. At this point I think the world has come to an end. I told him off, I looked for other jeans but none fit that description of not making her look too skinny (interpret this for ‘ill’) and I couldn’t find any. I began to have a breakdown. I’d already put mascara on so this wasn’t good.

At the low point of being upset over some jeans, I began to start thinking that all I wanted was something to focus my energy on when times got tough, a picture to look at and think that’s it right there- my reason. Why couldn’t I just have this one thing that I could hold on to. From there it led to crying that Wyatt had cystic fibrosis and would face uncertain times and that’s not fair. That led to why on earth did Heavenly Father think I could cope with this. It soon became an uncontrollable cry because I just don’t think I can handle it all. This was all in about ten minutes!!

Jonathan came up to me asking what he could do and then before we knew it he was crying and we were embracing each other with wet faces, snotty noses, I had a black mascara streaky ridden face that did not look good for pictures soon to be taken.

And we cried and cried and cried.

I think that we often say we’re cross with something or angry and it’s often a mask for something much deeper. We may say that a particular situation doesn’t affect us or hurt or we’re not bothered. I know I’m trying to be so much more honest with and about myself- more than I even require of others, because anger is too easy to use but only in the short term. It’s a mask. It’s a shield. It has and still can be a defence mechanism.

If we don’t let it out it can bottle up until let’s be honest- you won’t be able to find the right pair of jeans and you’ll have a breakdown and you may decide you need a straight jacket- because let’s be frank- it’s just perhaps the wrong pair of jeans!! No malice in the reason why, no one trying to make life harder. But it is because It will just be an outlet for what’s really going on. Dig deep- deal with things and my advice is cry it out. It’s refreshing. And it’s good for your mental health.

The results of the day?? Here are just a couple. I think they depict us perfectly 😉😘

Apes xx

Wyatt was 8 weeks old yesterday. I’m not sure how 8 weeks can seem like an entire lifetime but it really does. It feels like he’s been here forever. I can remember what a quiet house sounded like though so maybe all the screaming just makes time go slower haha!!

Today was his 5th CF appointment. It’s a love hate relationship with the team at the hospital; I love them and the work they do-I also hate seeing them so often.

Today whilst cradling Wyatt to settle him to sleep whilst there I kissed the side of his head and smelled him and in an instant that smell took me right back to holding Lauren in hospital as a small baby the same age and it hit me like a punch in the stomach. Life is not fair. I have no idea how to even try and see any of this as a blessing. He shouldn’t have it. It’s left me on the edge for the rest of the day.

I know we are blessed that he didn’t need surgery. I’m grateful. So it’s not exactly like Lauren’s early days. That smell could have been a physical thud, it felt painful. It’s just not OK with me that he has this. I’m struggling to come to terms with this, if that’s even what I’m supposed to do. It’s still heartbreaking that Lauren has it, so I suppose I’m learning to live with it but perhaps with Wyatt’s results I’m still grieving or something.

This sweet little face is in so much pain and we’re still working with Doctors to figure it all out. He’s has a 2 week course of antibiotics already. He’s on medicine daily already.  He screams so much that I put ear plugs in sometimes just so I don’t go insane. I’m not getting to enjoy this baby stage and I feel so resentful of that because it’s about all I wanted with everything else going on. I’m fairly sick of the saying ‘it won’t last forever’-it won’t-but neither will this small baby stage of his life and before I know it he’ll be turning ten and I’ll be trying to remember and hold on to memories, and the ones I have are just an unhappy screaming baby 80% of the time and no one has a clue why. I’m having a fair few WTF moments.

I feel like Jekyll and Hyde! One minute I want to rip my ears off and the next I’m sat cuddling Wyatt just so grateful for the silence and happy hahaha!! what a flippin roller-coaster. I can’t seem to tame the face of ‘kill me now’ and today at the hospital I realised others notice it because every doctor and person we saw kept asking how I was. For the record-asking that when someone looks like they’re about to cry can really just push them over the edge 😄

No, I’m not but what am I supposed to do about it?!

One day at a time apparently-well I’m living one hour at a time just trying to make sure I’m doing everything I can so that he’s settled and not unhappy. It’s mostly not working. God loves a tryer – so I’ve heard!

I write this whilst I’m sad, and tomorrow I’m hoping I feel marginally better as Jonnie is home and we’re hoping to have some pictures taken of the family-Maybe it’ll be me crying in this family one?!! ha!!!

To all new mum’s out there-it’s ok to feel crap, just say it out loud so others know and sometimes can ease the burden. I feel crap. I’m not OK. And that’s OK. This was never my story when I looked to the future and I’m trying to adjust to it all.

CF happens to be kicking my ass at the minute.

A xx

You might start reading this and think it will have a single take on the matter. In our heads there’s about a hundred different perspectives on how we feel about such crappy results. Wyatt has also got Cystic Fibrosis 😦

We never hoped for a second that this would be his path. The odds were in our favour. 1 in 4 still worried us, but the odds were positive. It still took the biggest leap of faith to take that step to have another child. Lauren is hard work, but we both felt this overwhelming need that another child was to join our family. If you believe in God and that there’s a purpose to being here more than just by chance, maybe that makes more sense to you. If you don’t then I’m sure there’s a chance you think we’re nuts! Either way is fine. But for us, this precious little spirit was supposed to come to earth for his journey and be our son. I’m so glad he’s my baby.

That being said- it makes it no easier when you hear the words ‘he’s got it, he’s got CF‘. In fact in some ways it makes it more confusing. I have my own journey to try to come to terms with this and try and find peace. Jonathan has his. And we have a journey together, a journey that takes my breath away with fear at the thought of doing this without Jonathan right next to me. It’s scary. It’s the unknown. It’s devastating on so many levels that tears just fill my eyes sometimes when I don’t even think I’m thinking about it. Holding Wyatt somehow eases that pain. As he held my hand yesterday on the way home from the chiropractor all I could think over and over was how unfair life is, but how much I love this little boy.

A positive… we absolutely know what we’re doing. I believe we have some Heavenly help and that we always have. But Jonathan and I are both experts or as expert as parents can be. Wyatt is in good hands. That won’t stop it being heartbreaking when he’s poorly and I still have to pound his chest to keep his lungs healthy. It never has with Lauren and it will be no different. It won’t stop me spiralling into a depression when he’s in hospital having IV’s. It won’t stop me crying hysterically when we’re told he’s grown something on a cough swab. Knowing that I can handle it doesn’t take away pain and heartbreak. It never has and never will and there are times when I’m so very vulnerable to the world because of all my worries.

Jonathan is similar, he deals with things more like an engineer but he feels those heart aches and this diagnosis has been like a punch in the stomach.

I’m actually bothered about people judging us having him. Part of me is utterly terrified that one day my son might hate me for having him. It’s perhaps my second biggest fear, only second to actually losing children to a horrible condition (if you possibly do think like that and judge us, the best thing to do is delete us on social media and get lost- honestly- life is too short to deal with you).

We’ll have our moments and mostly they’ll be in the quiet times. They’re real and it hurts. Love hurts (Jonnie reminded me that this statement is so true!). You feel the pain of those you love.

There is, however, some amazing advances in medicine that are literally just around the corner. The trials are in stage 3, and from the age of 12 Laurens life could be changed for the better forever! The doctors are confident and so we lay some trust and confidence in them with a teeny bit of excitement.

We are just gutted to the core. There’s nothing anyone can do really. This is our path and journey and I’m hoping I feel more comforted and more peace as time goes on, and even yesterday was sent a lovely talk by a friend; from one of our late church leaders and this quote in particular pulled at every heart string it could…

‘The lord compensates the faithful for every loss….while it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude’ Joseph B Wirthlin.

Right now I know I need to try and live in the moments. Enjoy Wyatt, keep enjoying Lauren, adjust to a manic morning schedule 😂 and try and just love my family with everything I have. Love is the driving force to help me do what I need to and these 3 humans… I love them so much my heart could burst.

Life won’t be what we wanted. Ever. But there is, and always will be a silverlining (his bowels weren’t blocked so no surgery!!), and hope, so I’ll take what I can get and try to keep myself sane whilst on this journey.

Just keep us in your prayers, We’re going to need all the help we can get!!

April (on behalf of April, Jonnie, Lauren & Wyatt) xxxx

#thebirch4

Seriously- I have so much respect for women. I think we deal with so much with our complicated bodies. Way more high maintenance than men’s bodies. Hands down.

I know I chose to have Lauren, and now have chosen to have this little dude. It doesn’t mean I have to like it though. People choose the gym- and hate it- but love the results. Same sort of principle.

Since the sickness passed I’ve done pretty well in health until the last month or so. My iron levels are low and this right here captured by Lauren (unbeknown to me until I got my phone back 😅) is what I think I look like most of the time now

Bags under my eyes, can’t get comfy to nap or have the time to most days. Sad that there’s still a little while to go. All the while the little monkey continues to suck the life out of me quite happily and is thriving hahaha!!

Lauren has been so good on the days where I just have to give in and try get 10 mins!

Women’s bodies are remarkable. I know there are those who love and thrive in pregnancy. I’m not one of them. But seriously hats off to you.

I cannot wait for my body back ha!! I do not love looking like a house hahahaha!!! It’s so very strange to me looking at pictures like this.

Home stretch!! ✌️

Apes x

I’ve been meaning to do an update for quite a while about Lauren’s walking and balancing. We started her at a chiropractor in Nov/Dec 2017 and saw fantastic results very quickly (O’Connor chiropractics in ilkley and It’s now been 20 months of visits).

Since then we have taken Lauren weekly. At first it was multiple times a week and then dropped down to once a week. She has her whole spine/body adjusted to release tension and open pathways from brain to body.

The most noticeable thing for us is her balance. Her confidence in that balance. Put those two together and she also has some new found independence which blows people away if they haven’t seen her for a while. To be frank- Jonnie and I probably hadn’t sat back in a while with the awe we should at what a long long way she has come.(Lauren stood up balancing by herself with mummy close by 😀)

Recently I’ve watched and made sure I’ve said out loud how grateful I am at her progress and I’ve really sat and contemplated it. It’s just incredible.

She literally didn’t know she had legs for anything- up till around 17 months. She didn’t really move them and certainly took no weight on them.

We did all we could. That in itself was a task but it helped her. And then we found Jason (she was 8!) who was confident he could help her. At first I thought too overly confident I’m ashamed to admit ha!! But help her he has!!! Even though she doesn’t speak, he’s built up a friendship with Lauren and she loves to see him. She is often tense, but he powers through her wriggly non co-operative approach 😁😁 and she always seems better afterwards.

We are positive it’s helped her moods, and walking and general comfort as she doesn’t seem as stressed and hasn’t for such a long time. This being during her toughest months whilst she is still fighting some bad bacterial infection due to her Cystic Fibrosis. We are so grateful for finding Jason!

I have also been attending and my body tells me when I need an adjustment! A back condition and throughout a pregnancy- he’s taken care of me too!! We think Jason is incredible at what he does and we wouldn’t be without our visits for anything!

If you have issues in neck/head/back/shoulders/hips- go get adjusted! Seriously, you won’t regret it!!

Apes (and on behalf of Lauren) 💜

Video on instagram @theessentialcfmum

Facebook page: The Essential CF Mum

xxxx

As time moves fast (sometimes only as fast as a snail) and the impending due date gets closer I’ve found myself with a bunch of emotions. Hormones definitely. You should all feel bad for Jonnie 😄 as I’ve literally not known what the heck is going on. It’s quite scary sometimes. And lonely. I don’t remember being this nuts with Lauren, and perhaps I was just being prepared for what was to come. However, this time round I’ve just felt incredibly sad for the last couple of weeks. Crazy more often than not. I’m not a fan of this pregnancy thing ha!!!

I am starting to feel better. But who knows 🤷🏻‍♀️ watch this space!

The most part of this pregnancy has been felt in peace and calm and dare I say faith that all will be well. Of course that may be ‘all will be well regardless of what happens’.

Jonnie and I were chatting last night about Lauren’s journey and the ‘what ifs’ of this little one. If he has a similar journey to Lauren’s then it will be so very hard. I don’t know how we’ll juggle hospital visits/stays, I don’t know how we’ll juggle the initially heart ache. I don’t know how we’ll stay positive and how we’ll juggle emotions. I honestly don’t know. I do know that when I start to think about all of that it brings me to tears, because we so desperately hope that that isn’t to be his journey and story.

When I re focus that we felt so strongly to have this baby, that all will be well whatever comes our way, then my heart feels a little lighter and I start to feel some peace again and hope. It’s a much nicer place to be!!

Jonathan said to me last night ‘whatever happens, we’ll just deal with it and we’ll be ok. It’s what we do’. It made me cry. Strength isn’t something you often see in yourself, but I see it in Jonathan and turn to him for that when my confidence is running low. I think strength comes from allowing yourself to be vulnerable and feel all those scary feelings, but at the same time doing what you have to. Each of us – you – have that strength. We choose how to use it or not. I really believe that, But if someone you love needs you, you dig deep and use all you have.

This baby boy (growing nicely at 34 weeks) will be surrounded by love. Raw, broken, pure unrefined kind of love. Not many get to see that side of me but whatever happens as scary as the immediate future seems, he will have my everything to see him through whatever he needs. He will have Jonathan’s quiet, pure, gracious and precious unrefined love. He will have Lauren’s love. No one I know loves like she does. He’s a very lucky little boy to have her as his sibling. She kisses him (my belly) daily, spontaneously, and is so excited for him to arrive and sit near her on the couch. I’m so glad she came first to teach me what a mummy should be like.

We will have a good 2 weeks wait to know if he has Cystic Fibrosis. It will be a long 2 weeks. But we will update everyone once we know.

Digging deeper lately but glad this part of the journey is nearly over!!!!

#BabyBirchNo2 hurry up 😂

Apes xx

This little one

Won’t (maybe isn’t) be classed as little for too much longer. She possibly isn’t now but because of her special needs I think I get to think of her like that a little longer. I’ve not always been a natural at this parenting thing. I’ve struggled through some tough stuff in my own life whilst trying to figure the rest out.

I think that the whole time she’s not been at school and dare I say whilst her health has been horrific, I’ve had the pleasure of being with her almost 100% of my time. It’s not something that I thought about too closely at the beginning and giving up work with deadline demands was tough – I had worked for Paul for a very long time. But the time and season came to solely focus on Lauren. I’ve pondered that more, recently.

I would say that if I were to put a time stamp on when I’ve started really pondering how lucky I’ve been, I’d say since Christmas time 2017, I’ve focused on the fact that whilst out of school at least I’ve got to be the sole caregiver for Lauren and do the part of parenting that I think is my strong point. I’ve managed her health. I’ve done the strict routine. Whilst it may be tiring sometimes, I’m good at that. Routine kept me going and gave me purpose at the beginning of this wild ride. It still does. It’s some sort of control on what’s happening to her.

I can do what’s needed, I’m definitely more of a do-er than thinker and so i’d even say I thrive from making sure Lauren’s care is the best.

I’ve loved hanging out with her. I’ve loved getting to a newer and better place in our relationship and I’m a calmer happier and better parent for the time we’ve had here together.

When she toddles off into school without me,

I’m really not sad, she’s confident and happy and thriving and so I get to drive away knowing she’s loving her day, and she gets to know mummy is there to pick her up 95% of the time (she may prefer Jacquie and Alice picking her up 😂) at the end of it.

I feel like I’m finally learning to be in the moments. I miss some still, but I’m learning to love more than I ever did. For now it gets to be about the people here and now and mostly Lauren; and I maybe understand what content feels like (pregnancy aside).

They really don’t stay small for long. I can close my eyes and I’m right back to taking this picture

It feels like yesterday. Yet so many ups and downs have come along since.

Preparing for the next chapter is scary. I have no clue about babies really and kids and definitely not ‘typical kids’ but Lauren already loves her little brother as you can see- she’s kissing my belly here (she’s just this past couple of months finally learned to kiss and it is adorable💜)

I think we’re going to be able to handle it. I mean the normal side. If there’s a CF side to handle- we’ll obviously be heartbroken, but we’ll just dust ourselves off and keep swimming- cos that’s what us Birch 3 do- we do what we have to and occasionally have melt downs in the middle 😁🙂

Love your little ones, hug them tight, play some more, and be whatever your best kind of parent is. They’ll remember the good and you’ll remember the sound of their laughs and giggles.

Xx

As Cystic Fibrosis awareness week comes to an end tomorrow what do you think I would like you to be aware of? Here’s just a few…

Be aware of the kid/adult having a coughing fit, they might not be ‘ill’ and maybe just have a disease affecting the lungs. I find this one hard and if anyone near me coughs too much I have to block my ears or nearly (sometimes I actually have) throw up. But I try to be more sensitive.

Keep your germs to yourself. No one likes you enough to want to share them. Not ever!!

Be aware that if a child has a life limiting disease that they’ll probably be spoiled a little more than usual. I try to not let our spoiling change Lauren’s character. I think we’re pretty lucky that she’s just gorgeous inside out. But I’ll be damned if I save money when I know she’ll enjoy something and we’ll get to make memories together. Life is too short. Contrary to what we’re taught at church about having savings (I should listen a little 😏), I would rather die poor and know she got to live every second she could with as much joy as possible. Don’t be jealous- I’d swap holidays and iPads and things in a heart beat for no cf for Lauren.

Be aware that we’re perhaps more cautious and over worriers. Don’t judge it. Just get over it. It’s not going to change.

Be aware that even though I personally try for a healthier diet to put fat on her, as you may have seen this week, it doesn’t always work. Whatever she will eat is what is going in that day. CF people use way more energy just living in a body that doesn’t work correctly. So anything on top of just breathing needs even more calories. So go ahead and feed your kids grapes and melon… mine will be sat eating chocolate and crisps and whatever else she can. Just let it be and don’t pass comment (although most people just want what she’s having 😁).

Be aware that there are some weeks like this last one in particular where kindness goes further than you can imagine. I’m still shocked at how devastated I am that she’s not put weight on. But it’s not really the weight; it’s knowing she’s got to (most likely) have another hospital stay, another general anaesthetic, another day puking (GA’s do that too her), another scar, another regime that scares me of getting it wrong, another thing her not understanding but having to get used to, another outward physical show of her disease, another thing to remind me life is so not fair and never will be no matter how beautiful and good a person is.

There are so many diseases and conditions and people fighting every day for equality and Lauren spans across many diverse groups with her complexities. But cf is where our hearts get hurt the most. It’s terrifying to think about that she may have a brother with the same condition. Our burden to bare.

But remember above all… this face

Was how Lauren looked on her cf clinic day, undisturbed by rubbish news and grateful to have seen the Physio, dietician, nurses, doctor and a lovely receptionist because she really does love them all. And mostly so do we because the way research is going now, the care for cf has improved massively and we’re so grateful that she is under such good care. So be thankful for the NHS.

Don’t look at us with a ‘I don’t know how you do it’, because if you’re reading this from my page- I know you at least a little bit and I know you love your kids or relatives enough that you would do anything they need to keep them safe and happy and you do that every day- it’s perhaps just different to how we have to.

Lastly- be kind, you really have no idea what another person is hurting over. So just try not to add to anyone’s burden. I’m still learning this one.

Until next time… #cfawarenessweek2018 😘

As #cfawareness week is upon us (18-24th June 2018) here are my thoughts I’d like my friends and family to know about…

It is relentless and I’m not shy about saying what a flippin hard task is at hand keeping this cute little munchkin away from harm.

It is hard, but Jonnie and I wouldn’t have it any other way. Whilst I don’t want sympathy… it’s also hard to give it sometimes because of all I’ve seen and do see Lauren go through. I’ll keep working on that 😉

When outings or trips are discussed my brain works overload to see if it has any dangers that I can afore see before I agree to anything. I don’t care if you think I’m overprotective or weird. Really. 😏

Nothing is simple.

I ask our lovely CF nurse some random questions. To see if the team know of bugs or germs that we aren’t aware of yet. For example, a fish tank. What are the risks- what about sand- if it’s wet then dried, does that mean it’s safe. What about sawdust- is it the same as hay and straw? What if I’m near someone with pneumonia – am I then a risk going back to Lauren? Etc etc.

There are so many more but we’ve got a stockpile of info in our brains!!

There will always be a worry and concern that we don’t know what time we have left with Lauren here on earth. Some days I’m sad and I just don’t even know how to explain why because it will seem irrational when she’s doing ‘well’. Sometimes I am just angry. I’m angry and annoyed and don’t understand or even want to understand why my child has the complexities of health and disabilities she does. If you don’t like a rant- then hang up or leave- I’m ok with that 😁 but I usually speak my mind so it’s not too different!

Time is a great source of strength though. I learn more each year and the team that look after Lauren deserve medals. Most of them anyway.

I pretty much know how much fat is in most things hahaha so when you’re eating your food near me I know how useful or not it is for Lauren! This translates to how bad it is for us or not – most of the time ha!!

I have no issues talking about poo. We’ve discussed it at great lengths with dieticians and doctors for over 9 years. I know what colour and consistence is good and what is not. Just another bucketload of info in a box in my brain haha!!

I know that whilst doctors are there to look after my child; my gut instinct is exactly what will keep me on an even (ish) keel. I don’t just do everything they say, because I know my Lauren better than anyone.

I know that essential oils help Lauren. I absolutely know she’d be so much worse off without them and that they’re helping her fragile body cope with and help fight infection. We wouldn’t be without them.

I know so many of you love and adore Lauren and show it by keeping your dirty germs away from us 😂 and I collectively high five you with great thanks. If it was your child- I would do the same.

We couldn’t do it without a great network of friends and family who support us in lots of different ways. Too many to write down. But thank you.

Lauren is, and always has been since she arrived, our number 1 priority.

Lauren makes a horrible sucky degrading disease look like a walk in the park.

#ourcysticfibrosiswarrior

Want to know anything?? Ask us- we’re not shy xx

Lauren is FINALLY starting school. Next Tuesday I will be taking her in to join in for an afternoon, and the same on Wednesday. The week after we’ll do a little bit too and from the 4th of June all her staff will start and she’ll get the last half term of year 4 before my beautiful girl is old enough for year 5 😳 (no idea where that time has gone).

The system failed us again for absolute certainty. Mostly it failed Lauren and unfortunately this story is not unique across our ever failing country.

A few years back we were promised by David Cameron that the elderly and disabled would be taken care of. Little did we know it was to try eradicate them from society as much as possible. This government and their cuts and lack of concern for our families does utterly grind on me. I do have to rein myself in and concentrate on us though- otherwise I’d go crazy.

Right now this little girl

… is who matters.

Uniform is bought (optimistically months ago!!) and we went to see the school and the new deputy last week who showed Lauren & us around. She of course left them wanting more of THAT smile!

They’re going to wish they had her sooner. And I’m going to stay a little bitter for now that there was nowhere safer, because the school is actually an old dingy thing with a couple of staff who already used up their ‘one strike and you’re out’ with me. They’ll probably never earn it back.

So… dare we say it again ?? This little munchkin

will be starting to transition back to formal education next week and at least get a half term out of year 4. We have definitely run a few marathons consecutively but this will be bitter sweet. I’ll miss this girl soooo much. But we’ll both love the separation… were very similar like that 😉🙂

Love the Birch 3. Xx

P.s. feeling loads better- both of us!! 😘