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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

To the hospital warriors- you are heroes

I sit here in laurens bed wishing she was home (incredibly hopeful that she will be tomorrow!!) and not at hospital. Looking at her room and the happiness this room gets sings out. I wish I never had to be apart from either one of my children. It’s so hard.

When your child is in hospital, they let one parent stay with them. The other has to leave by 10pm. Some of the realities of hospital stays include the ‘bed’ you get to sleep on!! It’s rough for your back (I currently can barely move my lower back 😢), and neck and in theory we have a comfy bed this time round!! It can be anything from a chair that reclines that’s usually broken, or a chair the lays out into a bed, to a bed similar to hospital beds.

People come in through the night poking and prodding at your child who you just want to be able to sleep. And of course this wakes you up multiple times a night.

Parents end up in pj’s most of the day as your child’s needs surpass yours and before you know it every dr in town knows what you sleep in and how rough you look in a morning- it’s not pretty haha!

You move as much stuff in as possible to make it comfortable and with all your conveniences to try and ease the burden of being away.

Each machine has a beep with a different level of annoyance attached. Each door slam makes you want to get cross with the frequent visitors all the while knowing they are mostly doing a great job.

Suddenly your child has a schedule to eat because that’s when hospital staff cook it all up- so you end up needing lots of extras so that they still eat as they often miss lunch.

Up until recently, once admitted, the child’s medicines are done and handed out by nurses. You do it every day, yet now you can’t!? That has thankfully changed because it was crazy and far more work for the nurses and staff. Plus- we do it better ☺️

You have to learn to talk to all kinds of people when you’re upset, angry, exhausted and you learn that you must adapt in those situations- mostly. Your tolerance levels definitely start to lower for incompetence which exists because human beings are not perfect. It’s hard.

The first few times you might not want to let anyone in as you’re hurting, and keeping everyone at arms length is easier?! As time goes on, I find myself enjoying the small talk a bit more with porters and cooks and cleaners. And finding comfort in the talks with nurses that get to know you even though you don’t want them to.

You think hospital sounds boring right? I don’t seem to ever get a minute to myself(the same goes for Jonathan). It’s constant obs, physio, feeding, washing, changing, bloods, docs in, dietician, IV’s, food, physio, meds’, changing, cleaning, docs again, tea… before you know it you’re swapping again with the other parent. It’s hard work. It feels like it’s harder than at home.

Harder work for sure when you have another child at home. I’ve never felt so torn.

FaceTime becomes a lifesaver and suddenly I love the technology I take for granted.

There are people who have it so much worse than us. I cannot imagine doing this for over a year (we knew someone who had). The strength to carry on is remarkable.

If you know of a hospital warrior- please help them. My blessings have come from visitors, face times, babysitting, sitting in hospital so us parents can go and eat, food brought to us for home and for hospital, texts, messages and cards, ironing done and offers of cleaning. Thank you doesn’t seem enough but my burdens have been made lighter by the army surrounding us.

If I were to wish for one thing it would be that kids don’t get sick, but our reality is that they do- and there’s lots that can help a very tough and emotional situation, so I will wish that others really do have the help that we’ve had to make it all a bit lighter when you’re ladened with the sadness of a very poorly child.

Thank you to everyone that has helped xxxx

You’d be surprised at how strong you really are

I don’t mean this with any ungratefulness or ignorance or malice; we’ve been told we’re strong so many times since Lauren came along I couldn’t keep count. This week especially I’ve been thinking about what strong is, and what it looks like and what it feels like.

It might sound arrogant but I do think I’m strong. It’s not something that has 1 dimension to it though. And it’s not something you feel all the time.

The strength I see in others is in so many different forms and I watch and try and learn from others..

The strength in watching a loved one battle illness and instead of breaking down and becoming consumed by fear, just doing what you can to be there for them whilst inside trying to deal with it- that blows my mind in others. Yet I do it every day and forget it’s being strong.

I can’t even imagine the hurt and pain of losing a loved one if that someone is a child, sibling, spouse, best friend. It was heartbreaking enough losing Nanna. Just trying to live each day one foot in front of the other as you adjust and miss them greatly- it’s a strength so many I know have.

Being strong mentally and emotionally whilst battling infertility is a strength I don’t think I’d handle, yet I watch others give of themselves to their extended families and friends and open up their heart in a way I admire so much.

Being strong whilst battling cancer, knowing your limits, knowing what bit of joy you can schedule in before the next round of chemo has me looking on in complete admiration.

Finding strength whilst overcoming the remnants of abuse in any form, so that each day you keep living and fighting to love and live life, those people deserve every happiness. Yet often the results of what’s happened leaves them only on survival mode. That is sheer strength.

Trying your best to be strong when you don’t like your job, or the path you’re on and you decide to do something about it. Acting instead of just sitting. I love watching that mental strength.

If you’ve divorced or split from a long term partner, finding a strength within to be kind through the very real hurt and pain is an admiral gift. It doesn’t look weak. Keeping character is a strength.

And if you find yourself at rock bottom from choices that have made you miserable (I’ve been here), deciding you will keep trying each day to make small changes to be better even when you keep failing, is strong.

Crying and feeling and being vulnerable and real with your emotions is a strength I wish more people had. And while I like to keep my composure I have learned to feel deeply.

Being a mother is challenging in different ways for each single one. Keep trying, keep loving, finding a strength when you thought there was none left- that’s inspiring!

I’m not scared to change and I try to roll with the punches, but when things hurt and pull on your heart strings it’s hard. I’m not strong all the time, re grouping is a must.

I feel really blessed this week. I feel calmer and more peaceful than I have before. I’m desperately missing Wyatt and Lauren equally and it’s testing me every day, but prayers are being answered and my soul feels soothed- like 90%, annoyed the other 10% 😉

If you look at those you love- you’d find strength whenever you needed to, to help them, because I genuinely feel like each of us have it within. So much more than you imagine.

Some days you won’t feel strong or you’ll be baffled at what others see in you enough to say it- usually it means they admire the way you’re just keeping on going regardless of what life throws at you.

I would rather have my challenges and struggles than many others I see, we learn to adapt a strength to conquer our issues, if we dig deep (I know that’s not always the case with mental illness etc I don’t mean to be insensitive).

Dig deep, find strength, keep swimming and take 1 day at a time, you really are stronger than you’ll likely ever know xx