A Life Unmonitored

Dear Freya

On the 31st May 2015, you became sick and our lives were turned upside down. By the time you read this, you will have heard the story a million and one times, but I’m going to tell you again.

You were 7 weeks old, and perfect. Those first weeks of your time with us were wonderful, and we had no idea what was around the corner for you. How could we know? You showed no signs of ill health or discontentment. Like I said, you were perfect; at least to us anyway. But then you woke on that Sunday morning in May, snuffly, lethargic and unable to feed and when we called the out of hours doctor to tell them you had a fever, they told us to take you straight to A&E. It was lucky that we did, because a few hours after your admittance your little body started to go into shock. I watched the doctors do everything they could to resuscitate you, and feared we might lose you. I will never forget standing there, my hands gripping the bars of your hospital cot, staring in disbelief and willing them to make you better. They did, and you were stable, and I breathed a sigh of relief. You were not out of the woods yet though, and you remained in a high dependency unit for several days before you were stable enough to return to a private room on the ward.

In those early days, it was difficult to say what was causing you to be so poorly. The doctors took samples of blood, urine, nasal fluid and saliva to try to discover the cause of your illness, but none of the tests provided an answer. So they continued to treat you with antipyretics for the fever, and a cocktail of antibiotics, in the hope that one of the drugs would combat whatever it was. But you didn’t get better. You were rigged up to monitors, and drips, with cannula in your wrists, ankles and even your head. You were fed via a tube in your nose. Your heart rate would soar every time your fever spiked, and your oxygen levels were dangerously low. Still, nobody knew what was wrong. You had x-rays on your head, your chest, your stomach. Nothing. You had a lumbar puncture. Nothing. And the doctors were struggling to hide their concern.

I longed to hold you, but you were so fragile, so unstable, that I daren’t move you from your safe place in that cot. So I sat by your side, and prayed for you to get well.

After a week, you were still no better, and the doctors decided to transfer you to the specialist Children’s Hospital in Sheffield. The tests continued, and you underwent further lumbar punctures and a bone marrow aspiration under general anaesthetic. You were so sick, that you slept through 20 minutes in an MRI scanner. You won’t remember the noise that scanner made, but I do. I think I always will.

It took 13 days of poking, prodding, testing and scanning before a heart scan (an echocardiogram) showed aneurysms in your coronary arteries. That is the day that the doctors diagnosed you with Kawasaki Disease. The treatment (intravenous immunoglobulin (IVIG), aspirin and steroids) did not work, and you were given a second dose. The inflammation continued to wreak havoc in your body and the damage to your heart worsened to the point that the Children’s Hospital were no longer able to care for you. You were transferred to the Cardiac High Dependency Unit at Leeds General Infirmary, where I was told to prepare for the worst. The last chance to save you, was a drug called Infliximab. We got special permission from NHS England to give you the drug, as it was not licensed for use in babies as young as you. Thank God for that, because it was that drug that finally stopped the disease in its tracks. It couldn’t reverse the damage that had already been done to your heart, but it prevented it from getting any worse.

In total, we spent 6 weeks in the hospital, finally returning to Sheffield from where you were eventually discharged. I wanted you home, but I felt so safe with you in the hospital, with the monitors warning us of any danger, and I was scared to leave that behind.

We had your cot in our room, just like we did with your brother and sister, only we kept you with us for a lot longer than we did them. I couldn’t allow you to be out of my sight, and I laid awake every night for the best part of a year, afraid to go to sleep. When we did move you into your own room, I kept your baby monitor by the side of my bed where I could be sure to hear every murmur. You were at risk of a heart attack, or aneurysm rupture, and I was terrified that we could lose you in the night.

We had baby monitors with the other children too, but by the time they reached around 2 years old, and the monitors packed in, we were happy to throw them away and move forwards. It was different with you. When the monitor broke, I thought about whether I could live without one like I had with Eliza and Fin, but the thought of it made me so anxious that I went out to buy another. This time, it was one with a screen so I could see you as well as hear you. It gave me comfort, and enabled me to start sleeping again. Even after the angiogram in 2018 told us that things were looking good, I still couldn’t bear to part with the monitor. It wasn’t doing anyone any harm, although I did wonder how long I would need it there as a crutch, and what I might do when it stopped working.

Fast forward to 2020 and the reason for writing to you today! Last year, the world was hit with a global pandemic. COVID-19 was killing tens of thousands of people across the globe and we learned to live a new normal of social distancing, face masks and lockdowns. And though in the beginning, I was petrified of the potential impact of COVID-19 on you should you catch it, the worry began to wane as the months passed and life started to get back to ‘normal’. Then, one night, we didn’t realise the monitor had switched itself off. And instead of feeling terrible, and anxious, I actually felt calm. We had made it through the night without it.

We have made it through many nights without it now. The one in your room is still in place, and the parent unit is not too far away should we ever need it, but it is no longer necessary for a good night’s sleep. I am sure if you are ever poorly, or when you go for your next cardiac procedure, we will get it back out of the drawer, but for now we don’t need it anymore. We are ready to live a life unmonitored, free from Kawasaki Disease and bad memories and fear. I won’t ever forget what you went through, and we will never become complacent about your little heart, but we no longer live in the shadow of that insidious disease.

For all the sadness that disease brought us, what we have achieved as a family since then has well and truly banished KD into the shadows. You have helped to raise awareness of the illness, inspired me to write and to run, and you have raised tens of thousands of pounds for research into the disease. But more than that, you have taught me how to love and how to appreciate the wonder of this simple life we live.

There was a time when the 31st May would send me into a melancholy state, ruminating on the past, not meaning to wallow but finding it impossible to ignore. I can’t say I’ll ever forget our journey with Kawasaki Disease, and the dates will always trigger a tiny bit of sorrow, but today I choose to celebrate the wonderful, amazing, charismatic little lady you have become.

I love you with all of my heart, and I will never stop being in awe of you. You have achieved more in your little life than most will in a lifetime, and you should grow up feeling powerful and proud. Don’t ever forget to look after that precious heart of yours, but remember that you are not defined by what that disease did to you.

I love you, peanut.

After your illness, I took you to the Bronte Parsonage Museum in Haworth. You know why it’s special to us – you are named after Emily Bronte, and it is our happy place because it was one of the first wonderful memories we made together. The top picture is from that day in 2015, and the one below is from yesterday when we went back to create more precious memories.

Before

I find myself constantly bemoaning this never-ending lockdown,

This Winter confinement that doesn’t even hint at brighter days.

My head says, “just keep going” but my heart shouts “no more!”.

Nothing is like it was before.

These days I can’t remember what fuel my car takes because the only trip it makes is to work and back.

And on the rare occasion I go to a shop I have to stop to think about 4 digits that I’ve forgotten, even though I used to use them so often. 

Now, before work, I have to swab my throat and nose just in case it shows I’m COVID positive and I’ll have to

Stay at home,

Protect the NHS,

Save lives.

This time last year I’d never heard of test and trace.

Hands, face, space was more likely to be a kid’s party game than a way of life.

Back then, jabs in arms were what you gave to friends when you were larking around.

Hugs were things that were allowed, when two was company, but only three was a crowd.

Now a crowd is six, now we have to get our kicks online, with Zoom or FaceTime.  

Now there is no living in my living room.

Before, home-schooling was something we chose, for children who flourished in their own abodes, out-with the confines of a convoluted curriculum. 

Now mums wail “unfair” when their kid is in a Google classroom but yours gets a coveted place in the real thing.

Now we have to keep smiling to maintain the masquerade,

But the masks we wear these days are medical grade.

I used to go to the gym, or swim. Those things I used to do to stay slim.

Now loungewear is the only clothing I feel comfortable in, my only exercise is the walk from couch to biscuit tin.

These days I only see my parents from the waist up, when we’re wired up, never real, just virtual.

The kids press faces against a screen or wrap their arms around themselves to represent a hug they can’t give.

If someone had told me that I would live my life without permission to hug my loved ones, I’d have laughed.

Now I wish I’d hugged them more when I had the chance – who knows how long it will be before I get another? 

I miss everything about life before. I miss unexpected knocks at the door,

And impromptu catchups with friends that you don’t have to plan for.

I miss the ignorant bliss of a TV without news, or daily Press Conferences

Where the Government do their best to impress on us the rules and how safe our schools are.

I miss being able to jump in my car, drive however far my fancy takes me,

Or hop on a train for rooftop bars and margaritas, should that be my predilection.

But more than this, I miss intimacy and connection.

I miss the people that make me feel whole and put me on the right path when I am losing control.

I miss laughter, and fun, the kind you can only get with someone you can be you with.

(Not the you with three kids).

They say those times are coming, that there is a light at the end of this year-long tunnel,

But I am not so sure.

For now, I do my best to endure the suffocating air of these four walls,

And await the day that evil COVID falls.

JTM

Throwback to December 2019

I was just thinking about 2019, getting philosophical as the year end looms, as you do. I was about to write that it has been a year of ups and downs, and then it dawned on me that that’s life isn’t it? Life is about balance – excitement and boredom, sweet and sour, sickness and health, more and less, love and indifference, anger and peace; we have moments of utter joy and periods of immense sadness. I guess that’s what makes this life as rich and beautiful as it is – the contrasts that keep us ever on our toes.

But, you know what? I wouldn’t want it any other way. You can’t truly appreciate the light unless you’ve experienced the darkness.

This year I have dealt with personal emotional turmoil, fought a huge battle (and won), and started a new job in unfamiliar territory. I entered 2019 broken by a huge change in my life, but am leaving it stronger and happier than I have been in a long time.

I am not going to make resolutions, or big claims about how 2020 is going to be my year. Why? Because it is just going to be another year, isn’t it? Of course, I am hoping for some highs, and I am planning to keep improving myself and striving towards achieving some dreams. But, I also know that there will be challenges and curveballs. I know that there will be ups and downs.

If I have learned anything in 2019, it is to expect the unexpected, or expect nothing at all. Understand that things don’t happen for a reason, they just happen. They happen, and we handle them in the best way we can. Sometimes we get it wrong, other times we will get it gloriously right.

So, I step into 2020 with hopes, but without expectation. With anticipation, but without fear. What will be, will be. Welcome 2020, I will try to make the best of you ☺️