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It’s not all peaches & cream

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

A different little challenge ahead

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

12 years is a long time to feel so sad

12 years ago today we were given the news that Lauren had cystic fibrosis.

I can remember sitting holding Lauren sat on a blue chair next to Jonathan, he’d just arrived. He sat next to me on a harder blue chair. The nurse Debbie came over and sat down and just blurted out ‘Dr brownlee called with the results and she has tested positive for cystic fibrosis’. Jonathan’s sinking eyes bring me to tears even all these years later. I knew it was coming. Dr Brownlee had told us some things to look out for and I’d seen them already (& tasted her- she was extra salty when I kissed her). I knew it in my gut from day one that something was wrong with her. I did not know what until we’d met him but I knew.

On the road to recover my at L.G.I

Fear settled in and in all honesty it robbed a lot of good times and days because I always felt this sickening feeling that time was always just running out so fast. I hate that I lived in fear. But I did.

Why am I even writing this? Well, I really need to process what I feel now.

I’ve had some haunting days where my mind has wandered, not too far unfortunately, to a dark place of a world without Lauren. A place where I have thought about her funeral and hoped it would do her justice. A place where I thought about how I would try to survive without her. I couldn’t shift those feelings. I was haunted by those thoughts. They played over and over. We always took more pictures than normal because I needed them to hang onto should the worst happen.

That was my home in my mind and I hated it.

When we heard of the new drug in America called Trikafta being tested, there was a small hope. But Laurens health wasn’t good and I wasn’t sure she’d make 12 (the age patients could start this drug). Jonnie kept optimistic. I just kept trying to keep her safe daily.

So skinny 💚

In 2019 when people started sharing stories of how this drug was flipping their life upside down in a good way, I started to be more hopeful. Then Laurens health drastically improved. Lockdown happened and the less effective drug Orkambi was introduced but it really didn’t have my heart. I nearly didn’t start her on it. But I felt prompted in May that we should and so I agreed. And then through the summer more and more people received the drug called Kaftrio here in the U.K. on compassionate grounds. This was changing their lives!! And it was close to home!!

I remember being sat at church, colouring. Jonnie brought Lauren round the corner and told me the drug had been approved already by the NHS for release as soon as the Liscence was given. WHAT JUST HAPPENED!!!!!!!! 😲😃

I started crying. I couldn’t help it. This was becoming more and more of a reality and I might not have to bury Lauren whilst she’s young. We might get her for so many more years!!

It was approved in Sept 2020. We had to wait until she was 12 in the December. But lockdown and shielding at the time kept her so safe and protected whilst her body became stronger and stronger and in prime condition to start this drug.

First dose 😃

She has to cope with it and her liver cope with processing it before my last sigh of relief will be given but her lungs sound healthy. She has more energy. This is just the beginning!!

Thinking about having to plan your child’s funeral, let alone losing a child for those who have (I cannot imagine), is a horrible and depressing state to be in. I lived in it for too long. 12 years. I feel this enormous weight lifted. I feel light. I feel relieved. I feel excited and I can’t wait for all of our adventures yet to come. We’re planning more and more for the next house and long term-Lauren with us!!! It’s so exciting. Life will always be tough. In some ways. Yes. But I will take all the challenges to come as long as she’s here with us.

Wyatt should be on the same drug before he’s 6 and he will grow not knowing the adverse effects of this disease. I can’t even tell you what depth of gratitude we feel. I thought he would grow up resenting us. Life has a very different outlook now!!

Happy Happy New year!!!!

I wish I could thank those people who created this medicine. I love them.

A xx

Struggles to Hope

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

She’s thriving😃

A year ago and 2 days. I was so nervous about this PEG and overwhelmed that this was yet another medical procedure to conquer. It made me scared and kind of took my breath away, especially with a one year old at home. I feel less than enough and inadequate as it is and here we are with no other choice.

Jonnie and I had fought against doctors and dieticians at this choice. But Lauren got too unwell and too small for us to keep winning.

I remember praying about it a lot. I remember waking up one day that July with a very clear prompting of ‘get her the PEG’. So that day we rang the dietician and set the ball rolling. Bypassing another surgeon appointment as we just wanted it done now. The surgeon agreed.

So her we were. The procedure went great but Laurens body was not handling this well at all. Her chest flared up and started causing her so many issues. Temperature rocketing. Her heart rate was so fast it kept on spiking into the ‘warning’ big red bleeping part of the monitor. Her heart was at serious risk of cardiac arrest. I was terrified. But I kept telling myself that I didn’t believe that I’d been prompted to have this done, just for her to die. It wasn’t her time. But her oxygen levels were shocking. Nothing was going in the right direction for the first 4-5 days. She was so poorly.

I don’t do well when there’s not a plan. Or at least when there’s a plan but the doctors think it wise to not tell us it. I could see their concern and I grilled them a LOT! But they were careful at what they said and the words ‘we just need to keep monitoring her’ were getting worn out. I didn’t need them to monitor- I could see her struggles. But wait we did and monitor, and just at the end of the two weeks she turned a big corner.

This was right up there with some of the scariest moments of my motherhood.

But she got through it. We took it day by day. I tried to question my faith less and go forward believing she was being kept safe. And a year on… just look at her. Thriving. I wish I’d done the peg sooner. If I had done it sooner though maybe I’d always question if we’d needed it. If we had left it longer maybe her chest issues wouldn’t have been picked up on and she wouldn’t be as strong now. I trust that the timing is what it should have been.

Seeing her so strong and solid in body, makes me so grateful that these things are even possible. So thankful for the nhs and her doctors and cf team. And so grateful I listen to promptings and do what I need to do regardless of fear I feel.

My Lauren… my world xx

It’s a grief that I didn’t know was coming

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

Cf week 2020

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 ☺️

Take a breath

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

Lockdown thoughts

I know it’s hard for so many people for a myriad of reasons and I really don’t mean to sound like I’m grateful for this horrid virus. I’m not. I understand that everyone has things that have affected their lives and I wish it could be easier for everyone. I’m sad that people are losing loved ones, not seeing loved ones and missing people enormously.

Lauren is struggling so bad with this and has definitely lost some of her spark. She needs people and I’m not sure I really understood that until this lockdown/shielding experience. She thrives on human connection. In fact it feeds her soul and I believe one of her greatest purpose of being here- spreading her joy is fed by her interaction and being around others. She’s finding it hard and it’s hard to watch.

Having said that- she is, as I am, really loving having Jonnie around more.

I’m looking for our silver linings and I’ve found many. Jonnie being home more has brought a peace and calmness to our home and especially my mentality that I’ve not felt before. Summer holidays for us are usually our own version of lockdown. But Jonnie is at work and we’re stuck inside during the days with no place to go and no one to see and it nearly every year drives me into a depression until it’s over. It’s worse than what I’m experiencing now. So for us, this has brought a new sense of ‘I’m, we’re, not alone’ and I’m counting my blessings for that.

Jonnie worked at home for the first 6 weeks. He has the whole of May off as he’s has been furloughed for a month in the hope when he goes back we can function slightly better here.

We’re used to a lot of extra help because we need it. At least 24 hours a week extra help during term times. So this is tough. I’m not trying to make light of that but it’s not as tough as summers. So comparatively we are functioning ok.

In fact this time has helped us understand each other a little better. Getting to know little things about each other. Spend a little more time as a family. It’s actually made me so grateful to feel like a family more than I have in forever. Wyatt is thriving having us all around. I am finding a peace of mind and new found love for life and excitement that we get to be family. It’s actually changing me for the better.

We actually borrowed a computer to play some games on from our childhood, or I should say my childhood as Jonnie didn’t have one- so we spent three hours laughing at Jonnie and playing and hanging out which is something we haven’t done in years. Even though things are still intense, we are getting to hang out more. I’m so thankful.

Yes I have full on flipped out. Jonnie has got annoyed. I nearly cried because he made the buns wrong (and then I proceeded to make them that way because it was actually a better idea haha!), and because the shrynges weren’t in the right order. So many little things.

However, I am not looking at this depressed. I am worried for people. I pray every day for people I love. I am concerned for Lauren and Wyatt and we’re being cautious all the time. But I am looking at what I can take from it. And a healthier stronger calmer marriage is my no1 take, grateful for time, not the circumstances surrounding it. Grateful that this man is my husband and thankful that beyond all the very low of lows we’ve had, that we’re still together and we’re working every day to stay together. I’m so thankful you took a chance on me Jonathan. I’m a lucky girl! 💙

Apes x

CF X2

I think sometimes we’re given trials to help us realise just what we’re capable of. My worst fear was having a second child with that possibility of them having CF too. The odds were in our favour but I knew the risk.

When we had Wyatt and ten days later were told he had CF too, my world seem to shatter again. The fears and pain are all very real and I felt them and still feel them creep up from time to time and get angry at how unfair life can be.

I flip from wondering if this is my personal challenge to conquer, or if this is a trial just for the kids and I’m bystander just here to help them. The truth is I have no idea why life is exactly how it is. No clue.

What I do know is that this was my worst fear. The thing that stopped me for years having our little boy. It kept me up at night worrying throughout my pregnancy. It made me judge myself more harshly than any outsider could. It made my heart ache with wishing and hoping that he wouldn’t get it.

And then of course, he did get it. What I’ve learned since that is pretty immense! I thought I knew it before, but I didn’t; love really does conquer all. That doesn’t mean it conquers CF or stop it or change the worries or risks. But it absolutely does enhance any fighting spirit within us as a family to do more to keep our children healthy however we possibly can. It means I sit back and have my heart completely full when the children independent of me or Jonnie get up and hold hands and dance along to music together!! 😃

I watch as Wyatt comes along to help with Laurens physio and she adores him doing it.

They’re magnets to each other ha!!

We’re supposed to keep them separate for physio but our house doesn’t allow for that. So I get worried from time to time. But I just have to do what I need to and leave the rest up to Heavenly Father. That might sound ridiculous to you and I don’t care that it does. I can’t do anything else. I pray Wyatt will be kept safe from the bugs Lauren has. I pray he won’t bring new bugs along that will compromise her lung health. I plan and plan to be out of the house and busy during holidays to minimise risks (as well as keep my sanity), all the while trying not to let that take charge so that I end up not letting them be near each other and bond.

Now there’s also a new dynamic that once one of them gets a cough/cold/sore throat- the other one does. Much harder to keep one well!

Above everything I’ve learned that I can do my worst thing. My heart still hurts, but my heart can totally take it because of how much I love these two beautiful children. I can face my worst fear head on. Sure- things get complicated and I use crazy amounts of shrynges, nappies, medicines, go to lots of appointments. I have to remember loads between the two of them and I worry. But love conquers all that and I would choose Wyatt all over again knowing what I know now.

We can all do hard things, we’re all asked to do hard things. No one is immune to that. Sometimes I think that until we live it we don’t realise our own strength and tenacity.

Don’t let fear stop you! Do not let fear persuade you that you’re not strong enough or brave enough. I sincerely believe Satan is as real as God, and his one purpose is to bring us misery. With that belief, I do not want that to stop me living. Look what I would have lived without had I kept listening to that voice!!

It’s hard having two with CF. It’s hard on lots of levels. And I guess you just have to be there to really witness it. But Jonnie and I can do this, and have an army of people right there helping us.

#ourcysticfibrosiswarriors

A xx