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

Time will pass anyway

I’ve been thinking about this a lot lately. Someone I follow on social media is nearing the end of her battle with cancer and I’m just so sad for her family. But whilst watching her life unfold in the last few months I can’t help but think that whilst she’s kept on fighting and searching for the next answer or treatment many many others would have stopped. Maybe accepted they don’t have long and choose that simpler (probably the wrong word) road. Knowing her character a little bit, I think going out fighting is the only way her soul has found peace. But this whole thing has just made me think so much about life and death and the time we are given.

Jonathan will very often give me a simple piece of advice whenever I’m weighing up a hard decision with a hard road ahead.

The time is going to pass anyway. What do you want to be your reality in a few weeks, a few months, and even a few years.

It very often makes me choose the harder road. I’ve watched as people choose the harder yet more rewarding road and accomplish the almost impossible.

We can often tell ourselves we don’t have time, or we don’t have the energy, or desire. If you give yourself a little talking to and really decide what it is you want in the future- after the time has passed.

I’m not even talking about the biggest decisions mostly- although that’s definitely what we need to think about. What about reading the most ridiculous boring toddler books on the planet over and over again? It would be EASY not to!! But what do I want? I want Wyatt and Lauren to love books and reading- something I didn’t grow up loving. It would be easy to stay indoors in horrid weather, to want to stay warm and cosy but what do I want? I want Wyatt and Lauren (who joined us on this outing) to love all weather and the outdoors.

When crossroads come up, I now hear Jonathan’s voice and often take a harder more exhausting road but decide what I want my future to look like, in business I want to be at least doterra diamond and use no earthly excuse to not work hard and keep going. At home I want to do everything humanly possible to keep Wyatt and Lauren well until we see a miracle in cf treatment reach the U.K. In my family life I want to keep changing to be a better mum and wife. In my spiritual life I want to be at peace with God in how I live my life, and in friendships I want to nourish them and keep them and not use excuses to not see my loved ones.

Make your time mean something and accomplish those things you want. Time will keep passing and it is up to you exactly what you do with it. Use it to your advantage. Use it wisely. Don’t use excuses more than opportunity.

The time will pass anyway.

April xx

Christmas Joy??

Christmas isn’t always full of joy.

A couple of years ago I stood with a friend next to her sisters new grave as she cried, and cried with her on a cold windy rainy December day. She remembers her daily, and Christmas time is hard because her sister loved it so much.

I have friends who lost a daughter very young to a complete freak accident years ago, yet I am sure not a day goes by without them wondering and thinking what she would have been like now. What would she want for Christmas? She should be sat with them.

I remember just popping up to Nanna’s house near Christmas to drop something off, only to find an array of mess (her Christmas pile haha) that we would end up sorting out and spend hours with her. She would tell her stories and we’d all eat chocolate. It fills me with sadness that she’s gone along with those times. Only memories left no matter how treasured.

People we know (multiple unfortunately) have had babies pass away near Christmas and their hearts are heavy to say the least. It is a time to just get through and survive, rather than full of joy.

There are carers all over that won’t get a break or rest over Christmas. So many of them. Illnesses and disabilities don’t take a break for a joyful Christmas.

People you may know are fighting cancer. Christmas really might not be full of joy but sickness as the chemo takes it’s toll.

There are most definitely some elderly people who are alone at Christmas, some will be ill with no one to check in or help take care of them. It won’t be full of joy but a wish that time will pass and better health will come their way in the weeks ahead, and hopefully some company.

I remember a friend who had lost a baby just shy of the time when it would have been termed a still birth. Instead it was a miscarriage. A tiny baby that she birthed and held and then had to say goodbye to. At the funeral she asked me to read out a song she had written her boy. There were times I couldn’t see the page for tears filling my eyes. She no doubt thinks about and wonders about her boy daily and feels that loss more at times like this.

A friend currently is watching a parent in the last stages of life hoping they at least get Christmas together and some of the new year.

There is so much sadness and heart ache in the world. Why do I write this?

YOU be some of the joy to someone. A small gift, a meal, some time spent with someone, an ear, a shoulder to cry on, or with, some food for someone struggling to eat. It could be anything, but don’t be too busy wrapped up in Christmas to lose sight of you spreading some Christmas joy. Not the kind that is insensitive, but the kind that leaves a lasting feeling of being loved and cared about at one of the safest times of the year for many but not all.

I adore this time of year but I get more out of it when I’ve helped others.

As a church, our church don’t believe Christ was born in December. But we choose to celebrate with the rest of the Christian world. And that baby who we celebrate didn’t enter the world rich, it was humble beginnings. From then on his life was about spreading hope and joy and comfort and peace. I really do love my saviour and try to emulate him.

Wishing everyone peace amongst sadness and love this Christmas time xx

Marriage is hard sometimes (a lot of the time for us), please don’t feel alone in that…

I’ve been writing this post for a long time. It’s difficult to know what to write without being depressing but keeping it real.

For starters- I truly think that hard work has the best rewards- with everything. But sometimes I feel like I know my limits and stop hitting my head against a brick wall. In all areas of life.

It’s hard to understand another persons life, or experiences even when they share them with you. We all see and react so differently, feel and hurt so differently and completely miss other people’s pain sometimes. I’ve found it’s hard even if that person lives your same challenges- for example your spouse.

The most real thing in marriage for me is how hard it actually is. That no matter how much you love someone, it is never 100% happy or smooth sailing. It’s hard. It’s actually brutal sometimes (especially with a new born or no sleep ha!!). Each time another stress is added into our lives such as Laurens recent ill health, it feels like the only way to go is to break. Because you can’t hurt this much anymore all on your own, and neither one of us feels that pain and sadness in the same way. So how do we help each other? I don’t know that in each situation that we can even? It’s lonely and can be a minefield of information whizzing around your head. How does someone get inside that and help when you don’t know what thoughts are rational yourself!

Thoughts of losing Lauren definitely plague me. But thoughts of losing Wyatt were certainly added to that when he was diagnosed. In such intense situations both husband and wife start thinking about the things that scare them most and some of that isn’t the same stuff. So you end up in a very heightened intense stressed situation. And who do you turn on? Each other. It’s like a cage you’re locked in and there’s no one else around- so it’s each other.

I’ve thought that it needs to be over so that we stop hurting. I’ve thought that we need to separate so we each get a break from our caring roles. I’ve thought the only answer to all of this sadness and pain was to break up and just deal with me, and protect myself. Jonathan has thought those same things. Does that mean we don’t love each other? No. But marriage is brutal sometimes.

I don’t expect marriage to be easy, but I would love to get to just focus on that- without it coming last because there is literally no time left.

This past week (month/year to be honest but more so lately) Jonnie and I have chatted about how we can keep trying. Because after calming down from arguments- (please note- telling me to calm down has NEVER EVER worked- just an FYI 😂😂) you see clearer what you want. We want to be a family. We really want to be together. It’s hard work but everything we do is. So how do we put that into action so that the next time things get so hard we don’t just call it a day? You have to focus on the other and hope they do the same. It’s no ones job to make me happy but I think in a partnership you vow to try do all you can for the other. If both do that then it should at least lighten the load and make it more bare able. Thoughtfulness and kindness go a very long way!

We made promises to each other and vows, and I made a promise to my Father in Heaven and Jonathan that I would love Jonathan forever. And so I will keep trying to do my bit. But in and amongst that I will probably still dream of smothering his snoring self with a pillow 😏😉.

Marriage is hard and if you’re struggling and all you think you see around you is happy marriages, please don’t worry- I’m convinced everyone thinks marriage is and can be hard.

Now- what you do with that situation is probably the difference between strong marriages and finding a friend in a family solicitor.

Just keep going and find ways to communicate!! It is massively key to alllllll happiness (huh hmmm Jonathan!!!!).

Date your spouse- it’s no good trying until you ‘get’ them then ignoring them. Finding attention in other places isn’t hard, but a happy loyal person would probably not even notice attention from elsewhere. Your spouse deserves you to still date them.

Have some social life. Everyone needs people. Everyone including me! Keep others around so that you know it’s ok to struggle sometimes but to keep trying will hopefully bring you joy.

I’m no expert. The opposite. But I know my marriage is super hard work and I’m super hard work. I have been on the brink of leaving. I’ve been giddy happy. I’ve neglected, and been neglected. Is any of that out of maliciousness? I really don’t believe it is. But it’s definitely good to re focus and be honest and try your best to achieve that happy marriage you want.

Of course there are exceptions- and I don’t think anyone should be trying to stay in any kind of abusive situation. In case you don’t know me. Just so that’s clear.

After some real soul searching lately, I’ve refreshed my brain and recharged my commitment to do my part because I love Jonathan and the good man he is. I want this to work no matter how hard it gets.

April xx