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Our lives over the last few months have been so upside down. The only way to describe it and how I feel about it is this.

Imagine you don’t like kids (I don’t), or sticky sugary snacks or wasps or birds (I don’t I don’t and I don’t).

Then you visit a zoo for the day, kids are everywhere, eating ice cream and lollies and getting covered in sticky residue and so they attract wasps galore. You move away and try find a spot where your anxiety levels aren’t ridiculously high and you sit down to eat your sandwich, that incidentally doesn’t have jam inside because that way wasps won’t like it- and then out of no where a ruddy seagull swoops on down and nabs the sandwich and flies away. And it had the cheek of using you arm as a catapult to get away quickly (this happened!)

Leaving you crying, hungry and still stuck in a place with sticky kids and wasps.

Yes. THAT!! 🙈😂

Over the last few weeks we have been trying so hard to be patient on moving. But the closer the ‘hopeful’ dates have gotten the harder and more stressful life has become. Some mornings I’ve had one child who basically needs an adult full time, being such a monkey and pulling hair and hitting, taking life slowly whilst I’m trying to drag her into the fast Lane. All the while the 3 year old, who also needs me, shouting he’s hungry and getting more upset. But I only have 1 pair of hands. I’m caught between trying to medicate and peg feed one after getting her up and toileted, dressed and downstairs, and getting the other dressed, medicated and then fed somewhere in between. I could cry. some mornings I do cry.

But then add in evenings where you’re so so tired, waiting to pull out the mattress to again sleep on the floor, to realise at 9pm that Lauren has vomited all over herself, the bed, the quilt. She now needs a shower. She is MAAAADD!!! Boy does she have a temper😬😂

I could also cry at this point, and sometimes do.

All the while Wyatt has had a funny tummy for a couple of weeks all related to cf and bowels. So once Lauren’s in bed, he gets up and complains on tummy ache. This goes on night after night bless him. Until one of those nights he’s still crying in pain until 6 am (cf docs were called, no temp no vomiting and we were all confident nothing serious was happening) and when he finally falls asleep it’s wrapped up on the top of my quilt with his hips propped up resting on my legs. So I laid next to him… freezing. Jonnie is somewhat asleep but realised I have no covers so he then gets Wyatt’s quilt (cot bed size haha) to cover me up.

I still have Lauren to take to school the next day and Jonnie has work. At a kitchen table.

Then there is the point where you can only see enemies everywhere, and suddenly turn on each other. For no reason, for the smallest, dumbest reasons you can find. Yes. This too.

We then had the lovely experience of going to the temple (a sacred place of worship for us) with Lauren for the first time and it was so so special. I had a moment in there watching her smile where I thought, what a shame it would be if we weren’t together forever. I can’t love her more I think, until she cuddles me later on and I just love her more. She is the most special little girl.

Then we went out for food. And I ate gluten. A little voice told me not to be daft but I ignored it and thought I’ll be fine.

So I’ve spent hours and hours this morning so very poorly and bloated and feeling sick. My poor tummy and bowels.

I’m an idiot. Awaiting an appointment with gastro team since last august but I’ve figured it out myself through elimination. I’m 100% staying away from gluten. I’ve done really well lately but I need to be better.

We still have no date for moving. I’m very stressed and sad about it. But I know it’ll happen.

The moral of the story…. Never ever say ‘could it get any worse’ because my friends…. YES!! It can ALWAYS get worse. It quite often does.

I’m feeling much better now thankfully and have been sufficiently humbled, to be patient and be grateful. These are first world problems and my sister and bro in law are so kind letting us squat here.

People are in much worse positions and even though my problems are real (we laugh about it all quite a bit, we’ve built up a resilience somewhat) and will stay real, someone always has it worse than you. Gain a little perspective.

Stay humble..

Love April (who will not for the foreseeable future be visiting zoos or any place with lots of children 😉😅)

If you have a child with disabilities, and most of the time you just get on with it and love them and try your best to look for and see the silver linings… I get you! I’m there with you. But can we just say this- some days it’s all uphill!!

I am so proud that Lauren got my little fiesty flare, so proud. It has gotten her to where she is. She’s accomplished so much and with the problems she has, it’s mighty impressive. When you don’t have a corpus collosum, communication between the two parts of the brain is as difficult as it gets for things like two handed coordination or walking. Yet she’s just so full of fight I adore her. Most days!

The flip side is when she decides to use that gift for the dark side!! She kicks, hits, pulls hair, refused POINT BLANK to take tablets. She refuses to eat. She is 95% solely peg fed now. It’s just heartbreaking and I feel so out of control it scares me a lot.

She refuses to get up off her potty this morning. All of the above happened, where I then have to pick up a fighting child trying not to drop her. My back is killing me instantly because she’s a wriggling fighting 30kg human!😫

There’s no where to go cool off because she needs to be ready for school. I then tell her Donna (who she loves!) is downstairs, and Grandad is coming to take her to school, she starts crying. She wants me. But in that moment I don’t want to see her for the rest of the day. I need space to process my feelings because I cannot keep up with hers.

So now it’s a rush job to pack her lunch, her school bag, her milk bag. Peg feed her, me force some tablets (not literally!!) down her, even though we have help. This is to stop her trying to throw up and act up, having lost every ounce of patience with her, just need her out of the house.

And then, just collapse into a bit of a state on how today is a complete failure and how on I don’t know how to feel. So I write. I write because it processes my emotions, I write to show people that on my good days , it’s great and I’m rocking this special needs mum thing, but I have awful days when I don’t want to be around my child. It’s too hard. Today is one of those days.

If you’re in that boat- don’t feel like you’re alone. You’re not. And the greatest gift we have (although I know, not guaranteed) is time. This afternoon I’ll start over with Miss Jekyll & Hyde. We’ll have the house to ourselves for a couple of hours, she’ll ask constantly about Grandad hoping she sees him when he brings Wyatt home, she’ll tell me Donna was here this morning and smile at me a lot.

I’m not always equipped for this rollercoaster!

And breathe…..

A xx

Lauren is doing well on her new medicine. I still don’t think I’ve processed it properly. I’m just catching my breath and letting a lot of the anxiety and sadness from the last decade slowly drift away. It’s a process.

Lauren isn’t yet out of the woods though. It’s a different sort of challenge and we’ve seen it progress drastically in just a year! You see, her PEG that she so desperately needed has helped her body start playing catch up and go from a little girls body to a preteen just hitting puberty all in the short space of 1 year. With this burst of weight and change, her scoliosis has progressed so much. It’s so sad to watch my once very active for what she could do little Lauren to having a bigger girl struggle to walk because her knees hurt, because her body is bent in places it shouldn’t be. She has an S bend scoliosis, but she also has it where it rotates within her too. This is called rotoscoliosis. Her right ribs are a couple of cm more forward now than her left, and her left ones are much further back. The S bend has gotten worse, and she looks like a decrepit old lady 😦

We went for her fitting for a brace back in Nov, to see if we could at least stop it progressing. She started to wear this in January when she got it but as a by product of 95% of the food she has being liquid, the tightness of the vest kept making her vomit. So that particular brace couldn’t be worn. We tried it over a month or so and the vomiting got worse.

We then got back in touch with the orthotics and she was booked in in early Feb for a different kind of brace, and a day before they closed for quarantine due to covid! So we had to wait for an appointment late March for her to go and luckily see a guy that is near retirement to have a mold done, for a new brace to be fashioned from it. We’re still waiting to have this arrive.

In the mean time, although her lungs are well in general since Kaftrio, her right lung is being squashed and has some infection in it that we’re not being able to remove during physio. We’ve chatted with the physiotherapist and will be trying a couple of things, but the worrying thing is it’s squashed and we can’t get to it.

Our next appointment is on the 7th May all being well and I’ll be taking her this time so I can meet the surgeon and then talking about when surgery will take place.

This will be a bigger and more dangerous operation than she’s ever had and I’m sad just thinking about it. It’s around 6-9hour surgery and she’ll have rods in her back. The ins and outs of it will be discussed further down the line, but my goal for May is to make sure I trust the guy who will likely be doing surgery on my child.

Lauren’s complicated and day to day mood/feelings around food changes and whether or not she vomits. She’s struggling and it’s hard going and super sad on some days, especially bath days when I can see her body just getting worse. It’s been some hard months watching this all unfold and not being able to control any of it. As always though, she keeps smiling mostly and brightening up our world.

Prayers welcome!

Aprilxx

I’ve been thinking a lot lately about a particular time in Lauren’s life that I can only describe as what I thought was the ‘beginning of the end’. She’d been unwell for the 6 months previous and no intervention was working.

We ended up hospitalised in the March 2017 and Lauren was a very small frail 9 year old. They did a bronchoscope to see what they could find. And after they had done it I remember Dr Lee walking me down a corridor to show me the results on a screen. I couldn’t speak because I knew by his tone that he didn’t have high hopes for this situation.

Scarring. And masses of infection. His words were, ‘her lungs were riddled with infection’. When he left I hugged Lauren so tight and immediately started to think about how I could possibly live without her. I couldn’t. I wouldn’t know how.

Just a day or so later Dr Lee entered Lauren’s room again but this time he was gowned and gloved up and gave me the bad news that one of the infections is quite horrible. They actually moved the girl in the room next door, even though CF patients are already isolated. She was too ill and if she caught what Lauren had I think they thought it would kill her.

Every time he gave me worse news Jonnie wasn’t with me.

And when Jonnie did come back to hospital we fell out as tensions were high and you don’t get privacy to deal with all of this really in a hospital.

I returned home one evening convinced Lauren wouldn’t be with us much longer. I cried the whole way home. I felt the physical pain as much as my heart could hurt. I knelt on my living room floor crying and pleading with God not to take her. I felt no better afterwards and cried myself to sleep.

We get to try some new drugs this Dec for Lauren. We’ll know after a year or so of handling it well that she will be on it long term. It could change her life for the better drastically. She is already so much healthier and stronger than she was 4 years ago when she took that turn for the worse.

You know, sometimes against the odds, God is good and we’re blessed when we think there is no way it could get better. And sometimes when we don’t know why things are as they are it feels like no one is listening to those prayers. What I have learned is that we are each on our own journey here on earth despite who is around us. No matter how dark my days have been and no matter whether that outlook changed quickly, I found comfort in knowing someone listens when we pray. Miracles can happen. Even when others are sceptical. We met a pulmonologist and told him of Lauren’s challenges and his face said everything. He didn’t think we could do anything for her. I wish he could see her now. Blessings that are promised are given.

She is here, continuing her journey, and she is a little miracle.

I desperately try around Christmas time (actually-all year) to spread a little extra joy. People need to feel love and hope. If I can help just one person feel that, I will feel like I’ve done something good in the world.

Strange Christmas related blog, but find someone to be kind to. No matter how bad you may feel. It lifts people both sides of the service.

Merry Christmas,

April xx

When Lauren was little, I didn’t compare her. She has cousins similar ages, but I was fairly uninterested in their development. I don’t mean that as callous as it sounds. But I couldn’t tell you when her cousins started walking or talking. I was so engrossed in Lauren and all the work ahead of us.

I chose early on that I would give it my everything. And the only way she’s not do something would be after lots and lots of tries and we would celebrate any and all of her teeny tiny milestones. I’m so grateful she’s had some huge ones.

Man, I love that little girl. I love her so much.

Until we had Wyatt I didn’t care at all about things she couldn’t do.

Recently Wyatt has started talking. He speaks to Lauren like he does us. And even though I know it’s ok that she can’t speak- it has made me so sad. She didn’t say mummy until she was 4. She didn’t say Daddy until she was nearly 8. She says Abbie, she says yeah, and she says ‘Iya’- Wyatt. But as I watch Wyatt’s vocabulary increase to making 3 word sentences even, I feel a sadness that has caught me off guard a bit.

I watch Wyatt walking around and enjoying the ability to run and jump and yesterday it just made me so sad because I’m starting to see differences that I very happily ignored. But it’s right in front of me.

I KNOW she has so much in her, we communicate, she gets to walk around, we make sure she has every opportunity. I don’t feel sorry for her in a pity kind of way, I just feel sad that it’s been so hard for her. For us. Wyatt will sit and eat right next to Lauren and his fine motor skills so developed. And although Lauren can use a spoon, her skills plateaued.

I would have found it so incredibly difficult had Wyatt come first, and then seeing Lauren’s struggle to conquer skills. I aren’t sure my heart could have taken it.

We’ve been so close knit these past months that I’m seeing every detail of difference.

I really aren’t saying that I’m disappointed, I’m not. I’m not ‘comparing’- I’m just seeing. Seeing things I never cared to before. Whilst I’m loving watching and growing with Wyatt, I’m feeling a grief I can’t even quite understand for Lauren’s struggle and also what I guess I see as her missing out on things.

It’s not a good place to stay and dwell and I’m working through it. But it has completely caught me by surprise.

I’m not sure this face needs any of that grief and sorrow…. that’s what I keep trying to focus on. And this smile that is returning a plenty!!

My beautiful Lauren 💜

April x

It’s Cystic Fibrosis awareness week this week here in the U.K.

It kind of feels like Covid has raised awareness for us. You’ve all had a glimpse into our lives. It’s scarey not knowing if or when you may fall ill. Whether or not that illness will cause irreversible damage. Or even if it will be the beginning of the end.

We’re not being dramatic, we feel like this on some level all of the time. So maybe if decisions are made or things said that make you think ‘don’t be ridiculous’, you just remember how it felt living with this risk of catching covid-19 and the uncertainties of that. That is where most of our crazy rules and decisions and thoughts come from. Protecting our children.

I’ve had a pretty awful week. But I can say with certainty that CF wise- this particular CF week will always be remembered as the most peaceful. My children are physically thriving in shielding. It may become periodic for us where we shut our doors and let them thrive. You won’t really recognise either when you see them again. It the biggest silver lining to come from all of this.

Both of their diagnosis’ were heart shattering. I’m crying writing this thinking of how unfair it is, how much it hurts as a mum to have those words said to you twice, they have cystic fibrosis. You can’t really explain the pain of ‘wishing’ to someone, it’s a physical pain. But time is a strength. It’s not a healer in my experience. The wounds are still there. But it’s helped me become stronger as we face our daily lives in a very lonely world most of the time.

This year is slightly different for us too as Lauren was able to start a new medicine called orkambi. The strangest bit for me is how happy I feel that in September Wyatt at such a young age will follow in his sisters footsteps. How life has changed! And what an incredible blessing.

I think my only hope for cystic fibrosis awareness is that you all, whoever reads this, are so much more aware of passing germs on. Your colds can be as deadly as covid-19 to a CF sufferer. Please remember this time by going forward and being more aware of the vulnerable around you.

And please know, that no matter how strong we have to be, how strong we appear, we have some incredibly sad and lonely and painful days. Check on your friends that deal with life limiting illnesses. We all know how to put a smile on for the world, because it’s just so sad to be sad all the time. But underneath it, it could be a very hard day.

Cystic Fibrosis sucks- and I would take it away in a heartbeat if I could, and not just because I cannot stomach phlegm haha!!! Take a deep breath and be so grateful you can breathe with ease,

Love – a very tired CF Mummy ☺️

I woke up today completely consumed by fear. It’s something that taunts me when it gets to rear it’s ugly head.

I kept thinking about how much I feared losing either one of my children. And then I started to panic. None of this is particularly rational. It comes from different things and situations and information. But it’s mashed together in no logical order. It’s anxiety and fear. It controlled me and made me miserable for such a long time. It still does from time to time.

I needed some time alone and so I read through some Instagram posts and from person to person learned of a mother who lost her 3 year old little girl just 4 days ago. They began the year not knowing anything was wrong. Then just a couple of months ago found an incurable cancer in her brain. I cried as I read her heart ache. I don’t know her. But I’m grateful she shared. She told of her hope and faith and said ‘faith doesn’t give you a get out of pain free pass’. And I’ve thought about that. I believe life is a test, in many respects. But that’s not the first and foremost part of the plan. It’s to have and find joy. It’s to live by faith and live in families and find love and faith and hope that will be able to see you through the pain and fear and trials.

I listened to some scriptures, I’ve watched Jill Thomas on Hope works, the ‘seeing green’ video- we had sacrament at home all dressed in our Sunday dress and I’ve hugged my children. I’ve looked at them and kissed them and taken some pictures. I’m processing and at the same time trying to be here in the moment. Because these moments don’t last forever but the love we have and bonds we make do last forever.

I just have to remind myself sometimes to take a breath and sort through my thoughts and feelings and then be here and live. Living in the moments.

April x