All I need

You are all I need Peanut.  Sure, there are other people that make me happy, but no-one has the power to make the sun shine through the rain like you do.  For me, you have become a symbol of strength and love, and a living example to all of us that we really should grab this life with everything we’ve got, because there really are no guarantees.

Quite often that makes me sad.  I can’t help but wonder what your future holds; sometimes I wish I had a crystal ball so I could see your life unfold and be happy that this thing isn’t going to get you one day.  But I guess there’s no fun in that is there?  So I have to hold on to hope.

You have a cardiology appointment next week, sweetheart.  I always find myself a little more melancholy than normal, and a bit more anxious that I usually am, as the date approaches.  The problem with me, is that I like to be in control.  And this most definitely does not allow for me to have control.  None.  I don’t expect the appointment to give me any surprises.  Not bad ones anyway.  Your condition, if it gets worse, is unlikely to get worse any time soon.  We may even be blessed with improvement, but let’s not jinx things, eh?  The best I can hope for is no change.  And even then, it’s a limited view.  What’s frightening is that we only know what we can see.  An echocardiogram can only show us about 3mm into your arteries.  Beyond that you need an MRI scan, but they have no plans to go looking yet.  I wonder why?  Maybe because you are so young, it would be preferable not to sedate you. I have to remind myself that the only reason you didn’t need to be sedated for your last MRI was because you were too sick to care.

I think, to all intents and purposes, we could be bold enough to say you are out of the woods for now.  Can I say that?  Should I say that?  The scientific part of my brain keeps telling me that the only thing that can cause you any problems is biology; my words will not be the cause.  Thoughts are not facts.  For now, I have two questions for the Cardiologist.  “What will I need to do throughout her life to protect her heart?”  and “Remember when you took me in a room and told me about the risk of a coronary aneurysm rupture, and how you told me that you could do nothing to prevent it, and that if it happened she would be gone?  Well, do you think that is a risk now?” Let’s see if we can get some questions answered next week shall we? So you will need to behave yourself.  You won’t! You’ve been trying to take over the echo since all this started; next week you are going to be rolling, and grabbing, and trying to crawl off the table!  Things just got interesting!

So it’s just dawned on me that I never had one of those baby books, the kind where you write all the milestones down.  To be honest, I had books with your brother and sister, but the novelty wore off a few weeks in and there are two half-finished (half-started?) baby record books gathering dust in the loft.  And then I thought I could do it here.  So let’s see, what can I tell you about you….

You have been sitting up for a while now.  For some time it seemed like you were never going to get there, but you did.  Your preferred mode of transport continues to be the ‘commando crawl‘ – you’d be fantastic on one of those military assault courses! And you’re fast Peanut, real fast! When you spot something you want, you can be at your target in a nanosecond.  I have to be on full alert – generally the thing you spot is something you shouldn’t have and everything goes in your mouth.  When I thought I’d cleaned up all the pine needles from the Christmas tree, you still somehow manage to find them.  And eat them.

You have a real sense of fun.  You are going to be like your brother; full of mischief.  You are always doing something, always busy.  You’ve just started getting up on your knees too, which means more of the world is within your reach, and I can see how exciting that is for you.  You are always in my kitchen cupboards, always pulling books off the bookshelves, always finding the one thing amongst all the other things that you are not allowed to have.  You are going to keep me busy!

You have a few words in your vocabulary.  “Daddy” has been a favourite for some time.  There’s something very cruel about ‘dadadadada’ being the easiest sound for a baby to make.  You’ve said a clear as a bell “Mama” once.  It was magic.  You’ve not said it since.  Your absolute favourite is “Uh-oh”, which was remarkable when you first said it because it alerted me to the fact that you had dropped something, like that time you dropped your toy in Marks and Spencer and I wondered why you wouldn’t stop saying “Uh-oh”.  Now it seems that “Uh-oh” is a catchall word for everything.  I think it means you are hungry, thirsty, tired, sad, angry, happy…it’s a one word fits all kind of thing!  I’ve been able to make out a few other discernible words; doggy, dinner, bye-bye.  You know your sister.  She’s Eliza.  That’s “a-la-la” to you.

And you laugh sweetheart, you really laugh.  Just a couple of weeks ago, we needed to tickle you to incite a giggle.  Now you laugh at everything and everyone! You laugh at trees and flowers, birds and cats, me, your dinner, everything! Just the sight of those tickling fingers coming your way and you are reduced to an uncontrollable cackle.  You see joy in most things, and you are slowly teaching me to do the same.

But, it isn’t all hearts and flowers my little cherub.  There is one thing that is currently driving me crazy, and that’s the scream! You have developed a squeal that would rival any dolphin, and brings half the neighbourhood’s dogs to our doorstep.  I think, roughly translated, it means “Hey, you, why are you not giving me your 100% total undivided attention right at this very second and every second after it?” but I don’t talk baby, so who knows if I’ve got that right.  Most mums could probably ignore it.  Unfortunately, I suffer with anxiety, and have real trouble with noise, so that little scream goes right through me and rings in my ears.  Let’s hope it passes soon (either the screaming or the anxiety – both would be nice).

You do still hold the title of ‘Epic Sleeper’, and if I didn’t know you were real I would start to wonder if you were some kind of clockwork toy.  I’ve looked for the key, I can’t find one.  The daylight hours are short with you Pickle.  You wake around 7am (sometimes later), nap for anything up to 2 hours at about 10am, and from 4pm to 6pm your constant squawking acts as a reminder that it is nearly bedtime.  6pm comes, you’re milk-drunk and sleepy and off you pop to bed, and we don’t hear a peep from you ’til morning.  So, on a 2-hour-nap day, I figure we get about 9 hours of you.  The thought of going back to work and that becoming 1 hour is unfathomable.

I don’t know if you will ever remember this time in your life.  I hope you don’t. Your first year has been blighted with illness, fear, hospitals, and me.  And when I say me, I don’t mean that I’m not a good mum to you.   I shout sometimes because the anxiety builds up inside my like gas in a pop bottle, and sometimes your brother or your sister, or a noise, or a setback, shakes me up just a little too much and the lid blows off.  And I am often sad.  I cry.  A lot.  I can’t tell you that I love you without tears pricking my eyes; I hope you don’t grow up associating love with sadness.  Sometimes when I look at you for too long, your face becomes the face of that tiny baby pleading with me with her eyes.  I don’t sleep that well either, because I’m always straining to hear you breathing on the monitor.  When I wake, it feels like I have slept holding my breath, and I am frozen in my bed until I hear a shuffle or a snuffle from you.  I am sure all this will pass, and I am getting help for it so that I can get this under control before you do start to notice that mummy is always sad.

It is lucky, then, that I adore you.  You are a pleasure to be around (which is lucky indeed, as you are the only person I see very much of!).  If  you were a different baby, I reckon I’d have cracked up by now.   But you, my dearest Freya, are the light in the darkest of days.  Sometimes, you look at me with those ocean deep eyes, and it’s like your very soul is speaking to me; “I’m gonna be ok mummy.”  

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Please feel free to like, share or comment on my posts. You can also learn about Freya’s journey with Kawasaki Disease at http://www.facebook.com/freyasstory

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Angels walk among us…

…they just have really tiny wings 

For someone like me, being on my own can be pretty damaging, especially after what we’ve been through in the last year.  Too much time means too much time to think, and when you mostly go all day without seeing another adult human being there’s a heck of a lot of time for thinking.  Sure, I have Freya, and she lights up every moment that I spend in her company.  But she sleeps for over 16 hours a day, and she’s not exactly a great conversationalist (sorry Freya, I really have no idea what you are saying!)

I know it’s not sustainable to have a life filled with people and chatter, and that I have to learn to live with the empty spaces in my world, but when I am not active or engaged, my mind is left wide open for intrusive thoughts and memories that turn a technicolour place into many shades of grey.

That’s life as a stay-at-home mum I guess (albeit temporary until my maternity leave ends), but I often wonder if it’s just me?  Is it my character that makes me unable to make it through a day alone without feeling the tears pricking at the corner of my eyes?  Does everyone feel bored, sad, lonely when they have nothing to do and nobody to see?  Or is that me? Am I depressed? I’m not sure.

Anyway, enough of those depressing musings! The intention of today’s blog was to recognise those people who are out there in the world making a difference to someone like me, without even realising the huge impact their actions have. Because to them, they are not doing anything special; I am sure reading this you will find the actions unremarkable.  But to me, they made enough of a difference to allow a shard of sunlight to burn through the cloud.

So, here goes..

Thank you to the local businesswoman whose message was the first I saw when I opened my eyes this morning, offering a raffle prize for an upcoming fundraiser without hesitation.  It took a lot of courage for me to send those requests, and it was reassuring to receive a positive response.  I won’t feel so nervous about the next person I approach now.

Thank you to the school mum who stood on the corner and let me ramble on about my concerns for my son who is having a bit of a challenging time at school.  You had things to do, but you took 20 minutes out of your busy life to make a space in mine.  It was just a chat.  But you were the first adult I spoke with today, and it felt like a good way to start the day.

Thank you to the girl in the coffee shop for not wrinkling her nose when she saw me rocking up with a pram.  In fact she looked pleased to see another person; it was empty when I got there.

Thank you to the dad who popped his head in the door to say “Hi” when he saw me sat there alone, and then kept me company for a bit before he went about his business.

Thank you to the pregnant lady and her mum (I’m guessing it was your mum) who admired Freya from the other side of the room and made me feel proud of my little girl (more proud).  And when I engaged you in conversation, thank you for letting me tell you about her story, and for listening and showing genuine concern for this little girl and her mum who were complete strangers to you just moments before.

Thank you to the owner of the beauty salon for welcoming me in, for showing an interest in Freya and for saying exactly the right thing; I know you must have been following our story.  Thank you for responding positively to my request, you must get them all the time. And thanks for giving me advice on how I might get the best out of the campaign, I appreciate that.

Thank you to the ladies in the chemist who served me with more than what I went in for ( and I don’t mean the syringes and nappy sacks!)  I am sure you think nothing of sparing a bit of attention for a beautiful baby, but to me it means the world to see her interacting with others; she doesn’t see many people.  I left your shop with a smile on my face and a spring in my step.

Thank you to the hairdresser and the florist for listening to a stranger; it was hard for me to approach you when you don’t know me at all; I will be in touch soon.

Thank you to the lovely boutique owner who has always put up with my constant prattle! Your support is appreciated, and I must repay the hours of bending your ear by buying a new dress when I’ve shifted this baby weight! My chatter sent both of our babies to sleep, and I applaud you for managing to stay awake.  Perhaps it passed some time for you too, I hope so.

Thank you to an old friend for getting in touch right on cue, to organise a catch up. It has been a little while; you know what happens when we leave it too long!! We will need a few dates booked in to deal with the gossip in instalments 😉

Thank you to the mum who messaged to say she had been thinking about something I had talked to her about. The links you sent me will be really useful; it was kind of you to go to so much trouble; I think you understand how big a decision that might be and how much it means to me.

Thank you to my bestest friend (I know it’s not a word, humour me, it’s an affectionate term) for giving me something to look forward to at the weekend.  Wine is most certainly the antidote to a lonely week.

Thanks to all of you for taking a tiny part of your day to make a massive difference in mine.  Yes, I know this is normal life to most people.  You go in a shop, you bump into people, you make smalltalk, you leave.  But know that the things you take for granted because you will do it with 50 people today, mean so much when you do it with me.  Today my world feels a little less small.

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The Maternity Thief

Today Freya is 9 months old.  9 months old.  I can’t even compute that.  It means that we are 7 months post-diagnosis, and yet it seems like only yesterday that we were taking our baby girl to A&E with a high temp and a low appetite, completely unaware that from that day on our lives would change forever.  I had my precious baby girl at home with me for 7 weeks before that fateful day.  Just 7 weeks; it was no time at all.  Then Kawasaki Disease stole into our lives, and stole away my maternity leave.

I have previously shared Freya’s journey, our journey, with her illness through a number of blogs, taken from a journal that I wrote during our 6 weeks in the hospital from 31st May to 9th July 2015. Before she became ill, I had spent most of those early weeks resting, making the most of being a mature mum who had no desire to rush into doing anything too much at all.  I was going to allow myself to enjoy this one, and the housework could wait.  So almost all of those 7 weeks, give or take a few visits from friends and relatives here and there, were spent cuddled up on the sofa with my little ‘Peanut’, and I watched movies or slept to recharge my batteries after what had been a pretty tiring delivery.  On the 30th May 2015, when my parents came to visit, we went for a day out to Cannon Hall Farm, a local attraction where my older children could feed the animals, and blow away some cobwebs with some fresh Summer air.  I was content, no, more than that, I was happy beyond what I could ever have imagined when I found myself unexpectedly pregnant again at 40.

The following day, Freya awoke as normal, but instead of guzzling down that first bottle of the day she laboured through it with a stuffed up nose, and after what seemed like an age of feeding she’d managed about an ounce of formula (I had stopped breastfeeding the week before).  Sure, I thought it was strange, but not being a particularly over-anxious parent I put it down to her snuffly nose, and decided to keep an eye on her.  She didn’t take the next feed either; I guess that was around 9am, and whilst my concern was peaked, I didn’t make any rash judgements about the situation.  She was sleepy, but what 7-week old baby isn’t?  That’s all they do! Feed and sleep, sleep and feed.  Except at that moment, Freya wasn’t too fussed about the feeding part.  I would say it was around 11:30 or 12 when I decided that I couldn’t let her sleep any longer without trying to get some milk in her, so I made up a bottle and went to rouse her from the bouncy chair she was sleeping in.  She looked warm, and was hot to the touch, so I fetched the digital ear thermometer and took her temperature.  38.3ºC.  She had a fever.

Again, this didn’t panic me particularly, and I sent my husband to the local Mothercare store to buy a medicine dispensing dummy (I’d had one with my son, and it is a great way to get medicine into a tiny baby).  While he was gone, I fished out the Calpol (paracetamol) and began to read the label for the right dosage.  “From 2 months” read the label.  Hmmm, should I give it to her?  Was it safe?  She was only a week off 2 months, and surely they were over-cautious with these things? But I couldn’t risk it – she was too precious, and I would never have forgiven myself if anything had gone wrong.  Both my mother and mother-in-law were home with me, and both agreed that if I was concerned, I shouldn’t mess about.  I should take her to A&E (the ER, for my American readers) – it was a Sunday, you see, so our GP surgery was closed (a factor in our KD journey that later I would be grateful for).  I opted to call the out of hours surgery number, and after explaining that Freya had a snuffly nose, high temp and no appetite, and that her breathing was becoming quite laboured (her tummy was moving up and down, as opposed to her chest), they commented that it was unusual for a baby as young as Freya to have a fever and directed us to take her to the local hospital right away.

The rest, as they say, is history.  But I often get asked about Freya’s journey, how we knew, what her symptoms were, so I thought it would be useful to document our experience with KD in 2015.

Week 1 (31st May to 6th June 2015)

  • Visit to local hospital A&E with low appetite, high temperature and laboured breathing.  Lethargy was not noted, as she was a tiny baby who was naturally sleeping a lot.
  • Transferred to Children’s Observation Unit for observation.  Immediate concern was Group B Strep as I had tested positive during the pregnancy.
  • Admitted to Children’s Ward for overnight observation and placed on IV antibiotics as a precaution (standard procedure for suspected meningitis, which can develop in babies who have contracted GBS from the mother).
  • Following morning around 5am, Freya develops a rash on her torso, which quickly spreads to her limbs.  Doctor is called who states that Freya’s body is shutting down and she is wheeled to the High Dependency Unit (HDU).
  • Freya is treated with a number of fluid boluses (“a rapid infusion of intravenous fluid or medication that is usually administered to correct a life-threatening condition”, Wisegeek.org).  I don’t know what they put into her body, I just know that they acted like her life depended on it, and I looked on, heartbroken and in shock.  I was alone; I called my husband and told him I thought he should come to the hospital.
  • Remains in HDU for 3 days.  IV antibiotics (Amoxycillin and Cefotaxime) and fluid are administered via cannula sites, as well as regular antipyretics (paracetamol and ibuprofen).  Due to the size of the tiny veins, the cannula are unstable and new sites have to be found daily, sometimes more often.  Monitors attached by wires to Freya’s body show a very high heart rate, and low oxygen levels.  Temperatures continue to spike despite medication to bring them down.
  • Condition stabilises, and Freya is moved back to the Children’s Ward.  Feeding is via an NG tube up her nose, and she has cannulae in her wrists and ankles.  Eventually a cannula is inserted in her head as the other sites fail.  Blood tests and throat swabs are not conclusive and do not test positively for any standard illnesses.  Continue to suspect GBS and/or bacterial meningitis.  CRP reaches over 300.  3rd antibiotic is introduced (Gentamicin).  Lumbar puncture is needed to diagnose meningitis, but Freya is too sick to undergo the procedure.
  • Day 5, nurse confirms nasal swabs test positive for Rhinovirus (the common cold).  One consultant states that Rhinovirus could make a tiny baby very sick. Another says “Rhinovirus does not do this to a  child”. Chest x-rays and cranial ultrasound are clear.
  • Day 6, Freya undergoes lumbar puncture.  Results show raised white blood cells, but not high enough to indicate bacterial meningitis.  However, Freya has been on 3 antibiotics for 6 days and it is considered that the condition may already have been fought off
  • Day 7, we are told that on a scale of 1-10, with 11 being dead, Freya is a 10.

Week 2 (7th to 13th June 2015)

  • Day 8, consultant (one we haven’t seen before) says that he is not happy that a diagnosis has not been reached and that if it was his child he would expect answers. Advises he has arranged transfer to a nearby Children’s Hospital where they had access to more resources, including the ability to carry out an echocardiogram (heart scan).  Freya has her first ride in an ambulance. That evening I point out Freya’s swollen feet to the on-duty Consultant. He requests an x-ray on her chest, head and stomach, and asks for her foot to be x-rayed for suspected injury at the cannula site (I believe this was pre-peel swelling and a symptom of KD).
  • Day 9, chest, head, stomach and foot x-rays are all clear.  Echocardiogram shows a slight murmur, but is clear otherwise.  Advised a murmur is not unusual in a newborn baby and usually resolves as the heart develops.
  • Immunology and Infectious Diseases run various tests on daily blood samples.  Antibiotics are replaced with Meropenem due to differences in hospital protocols.  Acyclovir is also introduced (known for treatment of the herpes virus).
  • Day 10, low haemoglobin levels result in Freya needing a blood transfusion.
  • Day 11, MRI scan is undertaken to look for clusters in the brain that would indicate GBS infection.  Freya is still so sick, she sleeps through the MRI scan and does not require a general anaesthetic.  MRI results are clear.
  • Day 12, Freya is placed under general anaesthetic in theatre, and undergoes a bone marrow aspiration to test her cells for Leukaemia. Tests are negative.  Two further lumbar punctures are undertaken, but unable to collect any spinal fluid.  Prolific rash appears on Freya’s arms and legs.  Immunology Consultant requests Rheumatology opinion.  Rheumatologist believes it is likely to be an infection, but requests a follow up echocardiogram and further blood tests.
  • Day 13, sent for follow up echo, Sonographer says that he is looking specifically for signs of Kawasaki Disease.  This is the first time I had heard those words.  Sonographer apologises for putting his foot in it.  Rheumatologist arrives to inform us that they have reached a diagnosis.  Freya has Kawasaki Disease, and her coronary arteries are dilated.  She requires immediate treatment of Intravenous Immunoglobulin, a blood product containing antibodies from thousands of donors.  It is administered intravenously over 12 hours.  Great Ormond Street and  Newcastle Children’s Hospital are consulted and Freya is given methylprednisolone (high dose IV steroids) and aspirin (20mg).  Seen by Ophthalmology to look for any issues with her eyes, nothing of note identified.  All antibiotics are stopped.  Contact made with Cardiologist at Leeds General Infirmary who says he is “not excited” by the coronary dilation.
  • Day 14, Freya receives the second half of her IVIG infusion (due to her size she had to have the dose over 2 days). Echo shows no change from previous day.

Week 3 (14th to 20th June 2015)

  • Day 15, follow up echo shows still no change from previous two days.  CRP remains elevated.  Rash has gone completely, and temperature spikes have reduced in frequency.
  • Day 16, further echo shows significant increase in coronary artery dilation.  The word aneurysm is mentioned.  All three coronary arteries (left, right and left anterior descending) are dilated to over 5 times the normal diameter for a baby of her age. A second dose of IVIG is required.  Contact made with Leeds Cardiology who insist that Freya is transferred to their Cardiac Unit. IV steroids stopped, and oral steroids are prescribed.
  • Day 17, second half of second IVIG dose is administered and Freya is transferred to Leeds.  Echo is carried out by Cardiologist who concurs with Sheffield’s findings and identifies a leaking aortic valve.  Freya is admitted to the Cardiac HDU.  Leeds Rheumatologist discusses possibility of administering a drug called Infliximab as they believe the inflammation is still ongoing.
  • Daily echo’s show no improvement, but no worsening either.  Request made to NHS England to give Freya Infliximab, not widely used in the treatment of KD, and not permitted for use in babies under 3 months (at that hospital at least).  Funding agreed based on Freya’s case; “a rare and severe presentation” of “persistently active Kawasaki Disease” (letter from NHS England granting funding).  Warned of the risks; Infliximab switches off TNF-alpha, the protein that helps the immune system to fight cancer (although it should be noted that this has been found in patients receiving the medication over prolonged periods, and no evidence has yet been found of malignancy following a single dose).  Cardiologist explains the risks associated with Freya’s condition; stenosis (narrowing of the arteries), clotting (causing potential heart attack) or rupture (unpreventable without cure).
  • Day 19, Infliximab infusion is given with no adverse reaction.  Freya is transferred back to Sheffield the following day

Weeks 4-6 (21st June to 8th July 2015)

  • Begin weaning steroid dose with a view to ceasing after 3 weeks.
  • Bloodwork shows improvements.  No temperatures or rashes.  CRP dropping to near-normal levels (13 on  Day 21).
  • Day 26, ambulance transfer to Leeds for cardiology follow-up.  No change. Advised unlikely to see any improvement for at least a year.
  • Allowed home for day release, days 28 and 29.  Discharged on Day 30 with instruction to return for bloodwork in one week.
  • Day 31, Freya’s nappies show blood in her stools.  Return to Sheffield Children’s Hospital with gastrointestinal bleeding.  Re-admitted to the ward.  Gastroenterologist wants to stop aspirin, Cardiology refuse.  Administered IV lansoprazole.  Great Ormond Street confirm there can be a small window to cease the aspirin if necessary.  Freya’s formula is switched to Neocate, a mild non-cow’s milk protein formula. Bleeding stops within 24 hours.  Ultrasound shows abnormalities in the arteries in Freya’s bowel.  Barium swallow test shows normal function.  Diagnosis: cow’s milk protein allergy exacerbated by KD inflammation and medication.  Steroids weaned at faster pace than originally planned.
  • Day 37, follow up Cardiology appointment in Leeds shows a reduction in the dilation of the coronary arteries (our “Wow!” moment) and the leaking valve has corrected itself.
  • Day 38, Freya is well, but kept in as a precaution.  Lips are still cracked and sore, bleeding when she cries.  Finally discharged on Day 39 after Barium Swallow test returns a normal result.  All bloodwork within normal levels, with the exception of ESR which remains slightly elevated.

Since then…..

13th July – follow up Rheumatology appointment (Sheffield) shows ESR remains elevated, but declining.  Cardiology follow up (Leeds) shows no change from previous echo. Aspirin dose is increased based on Freya’s weight gain (standard anti-platelet dose in KD patients is 5mg per kilo).

6th August – Day 68, follow up Cardiology appointment shows further reduction in the dilation of the coronaries, with the right coronary artery (RCA) normalised, and the LCA reduced to 3mm (still large for a baby, but not considered as severe).

10th August – Rheumatology Follow-up (Sheffield) – happy with progress,  all bloodwork has returned to normal ranges

13th August – Ophthalmology Follow-up (Sheffield) – discharged

3rd September – Gastroenterology Follow-up (Sheffield) – happy with progress

7th September – Cardiology Follow-Up (Leeds) – no change.  Care transferred to Doncaster.

16th October – Gastroenterology Follow-up (Sheffield) – happy with progress

4th November – Cardiology Follow-up (Doncaster).  No change.  Request transfer back to Leeds due to poor experience.

11th November – Gastroenterology Follow-up (Sheffield) – happy with progress

And there it is.  The last 9 months of my life on maternity leave.  Writing it down like this has highlighted to me why I feel so exhausted, and so cheated of the year I had planned to take off with my new daughter.  As I type, tears have begun to run down my cheeks.  I think that’s what upsets me the most.  The unfairness of it all.  When I gave birth to Freya, when she was finally here, I decided it was time to banish all that negativity and really live life.  I was going to enjoy every second of my maternity leave with her.  This was a chance I wouldn’t get again.  I imagined picnics in parks in the Summer sunshine; instead I watched other mums with their babies through a hospital window.  I imagined meeting new people as I introduced my baby to new experiences; instead I kept her away from other children because of a repressed immune system, and later not being able to immunise or protect against the potentially fatal consequences of illnesses like the flu or chicken pox.  

Don’t get me wrong, I have made some wonderful memories along the way, and in between the hospital stays and medical appointments, the calendar is peppered with visits to the Brontë Parsonage Museum, and Manchester’s Christmas Markets.  But where there are blanks on the calendar, there have been numerous phone calls battling the prescription of Freya’s aspirin, countless hours of research, letters to MPs…the list goes on.  The fact is that Kawasaki Disease stole my daughter’s health, took away my happiness, challenged my beliefs as parent and protector, and robbed me of my maternity leave.

Things are starting to settle down in 2016.  We are waiting for Freya’s next cardiology appointment where we can only hope for good news.  A blessing to stop researching for answers I will never find came in the form of e-mail responses from two cardiology professors, and specialists in Kawasaki Disease, and I feel a sense of relief from that.  Freya has an appointment with Immunology at the end of this month where I hope to get some closure on the immunisation issue and develop a plan to catch up on the vaccinations that Freya missed, plus those that might save her from a worse fate (rare or not!).  Perhaps we might even be able to take a holiday when we know she is less likely to pick anything nasty up on an airplane.  In March we see the Dieticians at Sheffield Children’s Hospital to discuss the introduction of dairy into Freya’s diet once she reaches one year old.  And following that, if there are no adverse reactions to cow’s milk in her diet, we should have our final Gastroenterology appointment.  I am not sure how long we will continue to see Rheumatology, but they mentioned 2 years at one point, so I guess we will wait and see.  That will leave us with Cardiology, which is likely to feature in Freya’s life for the foreseeable future.  They said “for life”.

I have 3 months left with my beautiful daughter, before my maternity leave comes to an end.  Instead of being a time of transition into the parental role, it has been a rollercoaster that I have wanted to get off from the first day Freya showed signs of illness.  I have enjoyed many precious moments, overshadowed by sadness and fear.  But I have known true love, and I have fought with every inch of me to keep my daughter safe.  I cannot imagine a life without her in it, and because she is here I have to be grateful, even if the past year has been hateful.  I cannot even start to think about leaving her in April.  Seems the challenges for me are not over yet.

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I wish I could turn the clock back to these days, cuddling on the sofa without a care in the world

When to Finish Work…

So, being the martyr that I am, I decided that I would do what was best for my employer and stay at work as long as possible. I guess I feel like I owe them for giving me this promotion knowing that I was pregnant. Plus I am just forming a team, so who will show them the ropes if I move on? I’m the only one of me in my business so there is nobody else to teach them.

For any pregnant ladies who might be asking themselves the same question, here is my advice (for what it is worth). Leave when you feel physically and mentally ready to leave. Do not allow any other influences to decide when you should or shouldn’t work. Your body will tell you. I am 34 weeks pregnant and was ready to leave a couple of weeks ago! But I’ve made commitments and I am in a senior position so I need to honour them. If I had the time again I would have been more selfish.

Reasons why I wish I could leave already

1. I am tired. Too tired to get up, too tired to get dressed. Too tired to learn. Too tired to listen. Too tired to care.

2. I ache. All over. By lunchtime, my back aches from leaning over my laptop. My shoulders burn with pain. When I get up to walk somewhere my groin feels like it used to after I’d been horse-riding. I look about 90 hobbling around!

3. I have nothing to wear. Even my casual clothes are too tight now and I am loathe to buy new ones this late in the day.

4. I am super-stressed. Setting myself huge milestones to reach and promising the world to my employer has become a source of real physical stress since I realised I have only 4 weeks left at work to do it all in! I think I experienced my first panic attack in the early hours of Saturday morning, and I’ve felt short of breath ever since. I feel like a coiled spring.

5. I have lost my ability to learn! This role is new and I’ve no-one to learn from. Things are being thrown at me from all directions and I don’t understand them all. And I don’t seem to be able to find the energy to learn.

6. I cannot concentrate. Lack of sleep is affecting my ability to concentrate on anything or anyone. And when I can’t get my head round something that I need to do, I feel the panic rising like bile from the pit of my stomach.

7. I am incredibly emotional. Tears and tantrums. Mostly tears. But some people (particularly work colleagues) are beginning to seriously grind my gears!!

8. It’s too much. I have 2 children (10 and 5 years old). The 10 year old is a dream generally, but is going through a very sensitive stage! My 5 year old is incredibly bright and gorgeous, but has anger issues. Hit me so hard yesterday that it took half an hour for the red mark to fade. And today he punched a teacher. I have a meeting with school next week, but I don’t have the energy to go and I most certainly can’t afford to leave work early. And there’s still housework to do, and preparations for the arrival of baby. I actually cancelled my birthday weekend away (I’m 40 on Thursday) because I know I will have nothing left by Friday.

9. I hate the travelling. Sometimes my journey to work takes me about an hour there and invariably 90 minutes back. That is mentally and physically tiring in itself. But my main concern is the paranoia about going into labour when I’m not near my home! Having Group B Strep I’ve been told I should go to the hospital as soon as I know I’m in labour to get the IV antibiotics into my system as soon as possible. The further away I am from my home town, the longer that will take. Those are valuable minutes that I don’t want to lose.

10. No-one will think any better of me. Ok so I do think that my boss appreciates the fact that I am doing what I can to help them out before I leave. But he has no idea how much physical and emotional stress I am putting myself under in doing so. And so he’ll never truly appreciate how hard it has all been. And when I don’t deliver some of what I have promised, there will be no allowances made for my reputation!

So, whilst that might all have ended up sounding like the ravings of a bitter woman, I hope you take it as it is intended. Make sure you go when you are ready and listen to your body. Right now I am so exhausted that I have nothing to give my family. Work are getting the best of me. My family are left with the tears and tantrums; shouting at the kids, sobbing into my husband’s shoulder. The ironing piles up, and new dust settles on the old. My body is saying “slow down”, and I’m ignoring it. If you can listen to yours, please do!