Blogs

Angels walk among us…

Posted on by Bluemama

…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.

IMG_3578

 

 

The Maternity Thief

Posted on by Bluemama

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.

IMG_4859
I wish I could turn the clock back to these days, cuddling on the sofa without a care in the world

The Loneliness of Motherhood

Posted on by Bluemama

Ok, so I am sure I will be shot down by all the mums who adore every baby-yoga filled second with their little ones, and those mums who go out to to work and would love to be at home with their children instead, but do you know what, being a stay-at-home mum is pretty darned lonely at times.  Today is one of those days, nothing planned, not another human in sight, just me and Freya and daytime TV.  The feeling starts to creep in mostly when Freya is napping, and I find myself wondering what to do next.  The laundry is all done, I’ve finished the ironing, even managed to grab a snack and drink a cup of coffee while it was still hot.  I have created a list of jobs to do, some important, some completely frivolous, but if I completed the list today, what would I do tomorrow?

I like making lists. I have a number of lists on the go at the moment.  I have a comprehensive to-do list which is a brain dump of every single thing I would like to achieve, from cleaning the downstairs loo to writing a novel.  And so that I don’t get too overwhelmed by the huge list I have created, I then have a daily list where I take three or four of the items from the full list that I would like to achieve today.  Sad, eh?! So today’s list reads:-

  • Freya – Doctors 09:40am, village
  • Finish laundry
  • Change beds
  • Contact list for party venues

The clock says 13:07, each item on the list has a satisfying tick by the side of it, and I have also achieved the following:-

  • Made middle child’s packed lunch
  • Dropped said middle child at school
  • Walked 1.5 miles from school to doctors (need to burn off the Christmas pudding)
  • Fed baby
  • Changed baby (multiply that one by 4 or more)
  • Unloaded dishwasher
  • Washed bottles
  • Measured baby formula into storage tubs
  • Removed labels from baby formula tins for possible future upcycling project that I will probably never get around to

Rock and roll!  I now find myself looking around the playroom (sounds grander than it is!) where I am sitting to write this, wondering what I should do now.  But I know there’s not much point starting anything as I really need to go and wake up a sleepy baby because it is time for lunch, and there will be another bottle to fit in before I set off on the 1.5 mile back to school where I left my car this morning.  Then sort kids tea, clean up, hound kids to get in the bath (I have two older ones, as well as the baby), bath baby, feed baby, put baby to bed, sort our tea, clean up, hound older kids to go to bed, stay up until ridiculously late so as to limit the number of hours the baby is left alone (she is insisting on sleeping on her front, and due to recent events I feel compelled to turn her over every time I check on her).  Groundhog Day.

I’m worried I might sound a little ungrateful, particularly as last year was one that showed us how lucky we are as a family, and how precious life is.  But I’m not complaining about my life in general, I just feel a bit lonely today and being a bit of a neghead and a catastrophic thinker, of course this bad day means I have a bad life!  And actually it’s not really a bad day is it, just a bad couple of hours.  I knew this would happen, though.  There was such a build up to Christmas with a magical pre-Christmas trip with the family to London, Freya’s first Christmas, a wedding and New Year celebrations; lots to keep my mind occupied and away from other things that have preoccupied my headspace for some time now.  I had a feeling that it wouldn’t last, and that once all of that good stuff was over, and I was left alone at home (albeit with my beautiful baby girl who I love spending time with – when she is awake!), with no real plans, that I might start to unravel again.

The good thing about having been treated for depression in the past, and the fact that I am quite in tune with my body and mind, is that I recognise the signs when it is lurking around the corner.  Walking around the village this morning, my mind raced with angry annoyance at lots of little things that have got under my skin recently.  Up in that brain of mine was a hive of activity; imagined conversations with people where I tell them exactly what I’m thinking, and decide that I know what everyone else is thinking too.  The fuse has been getting a little shorter too; less patience with the kids, quick to blame rather than accept when little things go wrong, not sleeping.  The good thing is that years of battling with different forms of negative thoughts, and having had CBT and counselling at various stages of my life, is that I now know how to have a pretty strong word with myself.  It’s like I am chastising a naughty child up there; “Pack it in! That’s enough!”  I wonder if that’s what they mean by hearing voices in your head…😳

So, what to do about it? First of all, I am not going to concern myself with this little episode.  In the past, feeling like this would have put me on full alert for a bout of depression to fall upon me and it would almost become a self-fulfilling prophecy.  Nope, that isn’t happening. This is me having a word with myself.  This is January blues, the calm after the storm.  Last year was full of plans, with medical appointments almost every week in one place or another, and a huge desire to go places where I could make memories with Freya, just in case…

I should be grateful for the lack of plans – it must be a sign that things are settling down, that we are getting somewhere close to normal.  It also means that I have a blank canvas ahead of me, and that should be exciting, shouldn’t it? So just because I don’t yet have any plans, doesn’t mean that the year ahead is bleak.  It just means that there are lots of plans left to make (and that I need to kick my Christmas-pudding filled butt into some kind of action to make them).

images.jpeg

And on that thought, right on cue, I hear a cry from upstairs. My sleeping beauty has awoken, and thus the spell of loneliness is broken.

IMG_5004

Apply Sadness Filter

Posted on by Bluemama

Yesterday my mother-in-law came round for a coffee and to see the children, like she does most days, and she brought with her some photographs of my eldest daughter which were taken when she was a very young baby, probably around the same age that my youngest daughter is now (nearly 9 months old).  At first I was struck by the resemblance. Laying there on her changing mat, another wrapped in a towel, sitting up in a Bumbo seat; with the exception of those eyes, I could have been looking at a photograph of Freya. That might not seem like much of an event to you; I am sure that most mothers note those family resemblances as they add to their brood. But it was remarkable to me, because I am not able to remember what my eldest looked like when she was that small. I can’t remember feeling overwhelmed by her beauty as I am with Freya, and yet they are almost identical.  And just a few moments after I stared at that photograph in wonder, I was struck by immense guilt and sadness and a sense of regret that I didn’t see it then.

Perhaps it is normal to forget? After all, there are 11 years between the two girls (wow, that makes me feel old!). Should I be able to remember? Do you remember? Somehow I feel I am in the minority. But then I think perhaps I am actually one of a majority who would prefer not to admit that their first child was actually a bit of a blur, and that the memories they believe they have can only be recalled with a visual prompt, a photograph.

Well, if it isn’t normal, then I have a good idea why this would be the case with me. 

I fell pregnant in 2003, a year after I married my husband, just as planned, just when I planned it. We didn’t even have to try that hard, we were lucky to fall very quickly, and I prayed for a little girl (I wouldn’t know what to do with a boy!). The pregnancy was pretty uneventful, and on the 14th August 2014, on the very day that she was due, she came into the world, just as planned, just when I had planned it. The labour was relatively easy until Eliza got herself into a bit of trouble, and her movement down the birth canal became a game of two steps forward, and three steps back. Eventually I was prepared for an emergency Caesarian section, but was taken to theatre for a ventouse delivery when my baby girl decided she would begin to make her exit without my help (I had been told to stop pushing by that point).

I rejected her the moment she entered the world. I don’t believe it was intentional, you see I was shaking uncontrollably from head to toe by the time they released me from the stirrups and I was so afraid that I would shake her right off of me and onto the cold, hard floor. Also, the blood stained creature wasn’t the image I had been provided with in any of the movies I had seen, and I wanted a clean, rosy-cheeked darling to be handed to me like I had imagined. Instead I shook, and I cried, and I turned my head towards the wall. The one opposite where the midwife held my baby. I will never forget the first words I heard from the midwife, words that rang in my ears for many years (even now); “I am weighing your baby, are you not even going to look?!” And there it was, my first evaluation as a mother, and I had been judged and found not to measure up.

On reflection, I believe the tone in which I remember those words were quite probably different in reality. I think that the moment my daughter was born, the chemical reaction that would unbalance my mind and create feelings I didn’t feel, and thoughts I didn’t think, sparked into action.

What happened over the next three years would take more than these pages to cover. And that is how long post-natal depression took from me, before I was fully able to appreciate what I had in front of me and learn how to love. Indeed, even on my daughter’s 3rd birthday I was discussing the notion of divorce with my husband; I truly felt that so much damage had been done (by me, by the illness), that we couldn’t come back from it. But we did, and we are still here, except despite swearing not to have another child for fear of history repeating itself, we are now a family of five! Funny how things turn out.

One of the most poignant memories I have during those three years was just after my daughter’s 1st birthday. I had struggled through that year, undiagnosed. I say struggled, but actually I was so convinced that I was fine and that everyone else had a problem and were trying to send me mad so that they could take my baby away from me (oh yes, I was really that crazy!) that I wasn’t really conscious of a struggle. However after a number of incidents that I am thankful to say didn’t quite turn out as my mind had planned, I sought help and was diagnosed with severe post-natal depression. I refused medication (as you do) and went on a waiting list for Cognitive Behavioural Therapy.  And then, just after she turned one, my husband and I took our little girl on her first holiday. We set off to the Maldives; who could be sad in Paradise..?

My memories of that trip to the Maldives are a bit clearer now, and I do remember there were some fun times. There were also some scary times, like the moment we nearly lost Eliza in her pram to some strong winds as the tail-end of a tropical storm hit the island, but that’s a story for another day. What I mostly remember, if I am truly honest, is the misery of washing and sterilising bottles. The constant battle with a buggy in the sand as I pushed my fractious baby round and round an island without pavement to try and get her to sleep. I remember being mostly alone (I wasn’t), and I remember being mostly sad (I was). I remember walking along the beach with my husband and saying “If we can’t be happy in paradise, what chance do we have back home?” Jeez, how must he have felt? I was so absorbed by my own misery I didn’t even stop to think about that…

Anyway, back to the point, this blog started with a photograph. Shortly after we came back from the Maldives, the photographs were developed (yup, old) and my husband handed them to me to look through. The usual stuff; sunsets, sand, sea, smiles… Hang on! Smiles? Who the hell was that?! And that was a defining moment for me, one that made me truly understand the power of the human mind. It had the ability to distort memory and reality, enough for me to question who the hell my husband was cosying up to in this picture…


The girl on the right is me. Except when I first saw this picture, I didn’t know it was me. I mean, the girl in the picture couldn’t possibly be me. The girl in the picture was smiling. 

I had felt for months like I had forgotten how to smile. In fact I felt like it was physically impossible for me to show any emotion whatsoever on my face. I felt numb, like all my facial muscles had died, rendering any expression impossible. And at the peak of my illness, my brain told me that the girl had to be someone else, because this girl could not smile, and this girl was too unhappy to be that one.

Crazy, right?! I asked my GP at the time how that could happen (after my “Who the f*** is that?!” was met with utter bemusement from the recipient), and she explained that your mind is like a filing cabinet, and when you want to recall a memory a drawer opens and the memory pops out. Except in my case this nasty bitch Depression was was holding all the drawers shut and scrambling the messages. I never realised the brain was capable of such trickery.

And that’s the thing about depression; it tricks you into believing that the world it has created for you is reality. It applies a sadness filter to everything your eye beholds. Your own reflection in a mirror looks like a stranger to you. Things that should bring you joy do nothing but reinforce your misery. You become so accustomed to the darkness that you lose any desire to see the light. And the longer the illness  goes unchecked and untreated, the deeper it’s nasty tentacles reach into your soul. By the end of it, it’s a wonder you even remember who you were.

I believe depression applied a sadness filter over my view of my first born baby girl. A filter that would steal her beauty from me, and trick me into believing I was indifferent towards her.  How could I not have seen what was in front of my eyes?  I will always be sorry that I missed those early years, and as grateful as I am that I am getting the chance to do it again with my youngest, just as I had wished it could have been, it will never be enough to alleviate the guilt that I feel now.

Goodbye 2015

Posted on by Bluemama

My New Year post is a little behind schedule this year, but it has been a busy couple of weeks, with a trip to London, Christmas, a wedding and New Year crammed into a short space of time.  And not only that, but 2015 was a pretty damned big year for me; one that required appropriate reflection.

Towards the end of 2014 I had begun to feel comfortable in my own skin for the first time in a long time, if ever before.  I had battled for the latter half of the year with a lot of negative thoughts and feelings towards an unplanned pregnancy that was going to ruin my fun, my career, my life.  But just before Christmas of that year, I had reunited with some old school friends who, coupled with some professional counselling, helped me to reach an understanding with my past, appreciate my present, and look forward to the future.  My life wasn’t over, it had just been thrown a pretty big curveball, and it was something we could learn to live with, perhaps even to enjoy.  Before my catharsis, I had believed myself an unlucky person.  Of course I realise now that it wasn’t really the truth, and that my old friend ‘Ant’ was dominant at the time and had stolen every ounce of reality I had.  She was determined to make me wallow in the darkness of this life that I hadn’t counted on, but I broke her spirit and ended 2014 triumphant.

On the 29th December 2014 I posted a blog titled ‘Metamorphosis’, which was the first blog that I publicly shared on Social Media, no longer concerned about hiding behind the mask of ‘Bluemama’;

“…2015 is a year of new beginnings for me in more ways than one.  It is the year my family will be complete, and the year that I will allow myself to feel truly complete.  No longer half a person living half a life, missing perfect moments whilst over-analysing the past.  These past few months have shown me a glimpse of the joy that can be felt through living this precious life in the present…”

I believed every word, but I wasn’t ‘cured’. Lord knows how many of my 40 years had been dedicated to the creation of a negative force in my mind that forced me into catastrophic thinking and general negheadedness (that’s my word).  Yes I felt more positive about my future, and I had come to terms with the massive change that was about to happen in my life, but I was troubled by worries about the birth, worries that were more exaggerated than the ‘normal’ pregnancy and birth concerns.  I was convinced that my baby would die, and when I was diagnosed Group B Strep positive during the latter weeks of the pregnancy, I believed I had found the killer.

I worked pretty much up to the wire, in a full time job that had only recently been created and I had a lot to do before I could walk away with comfort.  I had a team to recruit, as well as my replacement, and I had big projects that needed to be finished in my absence.  Needless to say I didn’t get much time to ‘wind down’ and as I was booked in to be induced on the due date because of maternal age, I didn’t get much of a chance to prepare for the next stage either.  My maternity leave commenced on the 5th April 2015.  I was induced on the 8th April.  And Freya Ellis Belle McBride was born happy and healthy on the 10th April.  I will never forget the joy that I felt when she finally entered this world, and stole her place in my heart.  To me her arrival was like a shining beacon in the darkness, telling me how silly I had been to fear the worst, and how many hours I had wasted on negativity and unfounded worry.  She was here, she was beautiful, and she was my reason to be positive about the future.

“…She was brought into my life to teach me some lessons, but most of all she was sent to me to show me that you really can dare to dream…” (Welcome to the World, 15th April 2015, Bluemama)

“…One of the first lessons I have learned is to embrace the gifts we are given and to dare to dream that sometimes good things do actually happen…” (No time for blogging, 20th April 2015, Bluemama)

“…Every now and again a tiny little voice starts to whisper concerns about something happening to my precious little girl, but I have some allies up there in that mind of mine swatting those thoughts away like pesky midges.  I think right now the worst that could happen…is that I could kill her with love…” (Obsession, 23rd April 2015, Bluemama)

On May 7th, I wrote a tiny blog titled ‘Cleansing the soul’.  I truly felt that the birth of Freya had healed a troubled heart and mind, and that I might look forward to a life of hope and dreams, no longer thinking the worst.  On May 20th I blogged again, sharing a poem that I had written for my son named ‘True Love’ which summed up the strength of the feelings that I had for Freya as well as it had for him.  It would be the last blog I would write for a while, and 11 days later hell opened its doors to us and stole my perfect, normal, happy life away from me.

The 31st May 2015 was when Freya’s Story ‘began’.  I shared my first blog about those missing weeks on the 19th July.  You can find those blogs if you wish to be acquainted with the full account of what took place between the 31st May and the 19th July.  For the sake of brevity here, understand that on the 31st May, at just 7 weeks old, Freya became seriously ill and was admitted to our local hospital Children’s Ward where, after going into septic shock she was treated with suspected bacterial meningitis.  After 8 days of watching our baby get more and more sick, she was transferred to a nearby specialist Children’s Hospital where after days of various tests, including MRI scans and a bone marrow aspiration under general anaesthetic, and requiring a blood transfusion, Freya was finally diagnosed with Atypical Kawasaki Disease.  On the 12th June 2015 we were told that our daughter’s heart was broken, and on the 12th June 2015 my heart broke too.

Freya recovered from the illness and was finally discharged, with a requirement to return for frequent follow up with Cardiology, Rheumatology and Gastroenterology (due to the widespread effects of Kawasaki Disease on a child’s body, a number of medical disciplines are involved).  Her heart quickly showed signs of improvement, although improvement has reached a standstill for the time-being, and we await her next cardiology follow up in the coming weeks, where we can hope for further improvement, but expect no change.  She continues to take a daily dose of aspirin to prevent her blood from clotting within the dilated arteries; medication she is likely to require for the rest of her life.

There has been a lot to be thankful for since the horror of the Summer.  Freya is a remarkable little girl.  She complains about very little, cutting teeth without so much as a whimper.  She is happy and content, inquisitive and cheeky all in one.  She is just like any other baby on the outside, and whilst we know that she has a broken heart on the inside, you wouldn’t know it and it has (so far) had no impact on her little life.  I started ‘Freya’s Story’ as part of my blog and set up a page on Facebook (www.facebook.com/freyasstory) so that I could raise awareness, share information and Freya’s progress, as well as supporting other parents who might be going through the same thing with their child.  Ok, so it hardly went viral, but I have just under 700 followers, and that is 700 more people than might have previously heard of Kawasaki Disease, and the feedback I have received from parents all over the world has been humbling.

This year has taught me many things.  I gave Freya life, and she taught me the meaning of it.  My belief system has been annihilated and I fear death around every corner.  Kawasaki Disease showed up and slapped me right round my smug new mummy face.  Of course I knew that none of us is bullet-proof, but the realisation of just how precious this life is was one that has been hard to come to terms with.  You always think this kind of stuff happens to other people, don’t you.  Every day in this life is bitter-sweet.  Joy is guarded by sorrow, love over-shadowed by fear. You know those moments when you think about the future, small insignificant things that pop into your mind every now and again, like “I wonder whether her hair will be straight or curly..?”, or “I can’t wait to see her running around…” Imagine if every time you looked to the future you had something digging you in the ribs to remind you that you don’t know what that future holds, warning you not to become too complacent or to tempt fate.  That is what this life is like.  I don’t know what is around the corner for Freya, and no matter how hard I try to be positive and weigh up the probability of anything going wrong at all, the sun is never quite strong enough to break through the little cloud of sorrow that lingers.  But maybe that cloud is a good thing?  A reminder not to take anything for granted. None of us is promised a tomorrow, so if there’s something we want to say or do, we should do it now – you will only ever regret those things you don’t do.

Needless to say, this Christmas was an important one for us as a family, perhaps me more than the rest of us.  Freya’s first Christmas was one way of making wonderful memories that would absolutely ensure that 2015 was ended on a positive note.  And New Year’s Eve was my opportunity to stick two fingers up at Kawasaki Disease, turn my back on 2015 and take a step into a new year and a new chapter in our lives.

I have learned who really matters to me through this last year, and I will make sure that I continue to appreciate those people for years to come.  I have met people that I would never have come across had it not been for Freya’s illness, and have opened my heart to strangers who have quite literally saved my life (you know who you are, Kawasister).  I have won some small battles with medical professionals, and secured some contacts that resulted in a Virgin Fundraising link being set up to gather funds for Kawasaki Disease research through the links between Imperial College London and Rady’s Children’s Hospital, California.  I have many ideas and hopes for 2016, centred around giving back and turning the experiences of last year into something good, but I am not going to share those until they are more concrete and I can ensure that I will not dismiss the ideas on a whim; I don’t want to disappoint anyone by making promises I may not keep, most of all I don’t want to disappoint myself.

…….

Freya just woke up, she is still awake.  This is an unusual situation for us as she is usually fast asleep by 6pm and we don’t hear a peep from her until the morning.  Holding her in my arms just a moment ago reinforced for me the feeling of living in this moment.  I couldn’t feel angry or annoyed at her for waking, I don’t think I could feel angry or annoyed at her for anything!  I hope that one day I can tell her that I love her without tears being hot on the heels of those three little words.  And I hope that I never forget that whilst tomorrow might be stolen from any one of us, nothing can take away yesterday, or this moment.  

…….

My hopes for 2016 are that we get closure on some of the outstanding issues with Freya’s health.  I would like to obtain clarity around the issue of routine immunisations, and hopefully get caught up with those that she missed (all of them!).  I would specifically like to protect Freya from chicken pox so that I might be less concerned about her mixing with other children socially.  I do so wish to see her interact with her peers like a normal baby should.

I want to exorcise the Kawademons that still haunt me with flashbacks and intrusive memories, and eagerly await the start of treatment for that in the coming months.

I want to fulfil my promise to donate blood to give back for the blood and blood products that Freya received, ultimately saving her life.  And I want to give back in other ways too, but I’m going to keep quiet about those for a little while 😉

I want to continue to make memories with those special people in my life. I would particularly like to be able to take a family holiday this year, as we weren’t able to go last year, and the immunisation issue has prevented us from flying.  I want normal for me and my family.

This year has to be better than the last.  It has to be.  I mean, 2015 wasn’t all bad; it brought us Freya.  But let’s face it, it was shitter than shit for the most part.  Let life throw at us what it will, I no longer heed that threatening cloud. It can hover above my head and threaten rain wherever it chooses, but I am no fair-weather girl, and a bit of rain never stopped me from smiling.  What’s that saying I keep seeing on Facebook? “Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain.”   

IMG_2077

Merry Christmas, Grandad

Posted on by Bluemama

I had only lived a third of this life when I lost my Grandad on Christmas Eve. I was 13 years old, it was my first loss and I have never experienced another loss like it since.

Twenty-seven years have not altered my memories of one of this world’s most wonderful men. I wish he had stayed here long enough for my children to have met him.

I wrote a poem that was read at his funeral, which from memory went something like this…

You will never be forgotten, Grandad.  Merry Christmas xxx

The Thing About Expectation…

Posted on by Bluemama

William Shakespeare is quoted as saying that “expectation is the root of all heartache”, and do you know what, I believe he is right.  OK, so for the benefit of today’s blog post we will ignore the fact that no-one has ever been able to provide a source for that quote and I actually believe it is a rather tenuous  reference to a line in one of Shakespeare’s many plays; “Oft expectation fails, and most oft there where most it promises…” (All’s Well That Ends Well, 2.1, 141-2).  Nonetheless the sentiment is there; where there is expectation, there lies an opportunity for disappointment.

Expecting less of people is a notion that I have personally battled with for a number of years.  I mean, why should we lower our expectations of people? Isn’t that called settling?  And what if people don’t live up to my expectations? Do I cut them off, or let them off? And what exactly am I expecting of other people; am I expecting them to respond, act, behave just like I would in any given situation? Surely not.  Surely I can’t expect to control the thoughts and actions of others, no matter what my expectations might be…

But what is expectation anyway?  One dictionary definition is that it is a “strong belief that something will happen or be the case…”  A strong belief; that’s important.  Just because I believe it should happen, doesn’t mean that it will.  Like I said, no matter what expectations I might have, I have no control over others to deliver to them in the exact way that I expect them to.  Reaching that understanding, the realisation that it is ok to have expectations as long as my response to the reality isn’t unreasonable has been a huge step in finding happiness in a world that threatens far too easily to disappoint.

There are a couple of ways to go about reaching that level of contentment. One is to have no expectations whatsover.  Let’s face it, if you don’t expect anything from anyone, you can’t ever be disappointed can you! Is that realistic though? Is it even human nature not to have any belief in what you think is right or wrong?  Probably not.  So I say go ahead, set those expectations if you will.  Set them as high as you can reach.  But, and this is a big ‘BUT’, don’t allow your world to fall apart when the subject of your expectations doesn’t pull through for you how you had hoped.

How many of you have made plans with your partner, or your family, both even, and had this romantic notion in your head about how it is going to be?  I’d be as bold as to say that at least 80% of you are lying to yourselves if you said not.  This time of year is a perfect example; we write Christmas lists making our expectations for what those parcels might yield perfectly clear.  We buy presents for others, ‘knowing’ how they are going to be received; “Mum will love this..”, “Eliza is going to go crazy when she opens this…” And in your mind you have this picture of how that is going to look. It’s Christmas Day, so of course the snow will be falling.  The log fire will be crackling, and everyone is eagerly anticipating the gifts. Except it doesn’t snow (it rarely does on Christmas Day), you don’t have a log fire (you got a bit carried away with that one!), you just watched your mum open the same present from a sibling, and your daughter is so overwhelmed by the concert tickets that instead of the tears of joy and arms flung around your neck that you anticipated, she sits there dumbfounded with an odd look on her face and for a moment you think you might have got it wrong.

Take this weekend.  I had this idea that we would get into the festive mood by taking in a local Christmas Fayre with the children.  The kids would enjoy rides on the Carousel, as my husband and I watched with a cup of hot mulled wine warming our hands.  We would buy lots of unusual gifts and treats for the Christmas period, and then we would buy a tree on the way home, and some outdoor lights to decorate the house.  All of this would be undertaken to the sound of Michael Buble crooning Christmas classics, and it would be Christmas in the McBride house after all!  Yeah, well torrential rain and muddy fields did not feature in my vision of how that was all going to pan out.  Neither did a marquee so crammed full of people that you couldn’t get to see a stall, let alone purchase anything from one.  The kids queued in the rain for a 50p per minute ride on a carousel, and yes I had my mulled wine, but was irked by the fact that my husband wouldn’t partake.  Apparently he doesn’t like it, even if I did try to convince him it was Christmas in a glass and everyone should like it.  My son got more of his hot chocolate down his jacket than actually made it to his mouth, and someone knocked into my eldest daughter, scalding her with hers.  The reindeer Christmas decoration that I had seen with a sign for £30 around it’s neck, actually turned out to be £210 and was met with a very stern shake of the head from the husband.  We managed to choose a Christmas tree with little event (after he convinced me that our ceiling was not 7 feet tall!).  Buying outdoor lights was a treat, resulting in  a 12 metre line of icicle lights making it across one window of the house until we realised that the measurement was for the whole set, including about 8 metres of wire from the mains!  Cue a return trip to The Range from Sprotbrough’s very own Grinch, but the lights are up and they do look lovely (thanks Gav!)

It is part of my make-up to have expectations of people.  I have a very vivid and overactive imagination and that means I can create a whole feature film in my head of an event before it has even happened.  I can’t change that, it’s just how my wonderful brain works.  But what I have changed over this year (possibly after we were given some pretty harsh perspective on what really matters in this life) is my reaction when things don’t quite go how I planned them.

Why should Gavin jump up and down with excitement over that cute pink dress I just bought our baby girl? He has about as much interest in little pink dresses as I have in football, and he has no expectations of me on that score.  Why does my bottom lip come out when he doesn’t enthuse over the new boots I’ve bought? To him, those boots look like every other pair of boots I own and he just can’t work out why on Earth I needed another pair!  He has no interest in where I carefully position each lovely sparkly ornament on the Christmas tree; to him it looked alright when it just had the lights on (that was his contribution).  We like different things, we are chalk and cheese; he is from Mars, and I am from Venus.  That doesn’t mean I am going to stop showing him my new purchases, or asking for his opinion. But I won’t be disappointed, upset, hurt or angry if I don’t get the response I was expecting.

There are lots of things in life that don’t go the way you expected them to. I didn’t expect our daughter to be struck by a life-threatening disease when I had planned to be out walking in the Spring sunshine with my newborn baby.  Trust me, I’ve grieved for the loss of those moments I planned.  But that’s what life does, doesn’t it.  It throws  curveballs – isn’t that what makes this life amazing?  I don’t believe in all those “things happen for a reason” cliches – to believe that would be to accept that Freya became ill as part of some divine path and that makes it ok.  It isn’t ok.  But what it did do is teach me to take life for what it is, at face value.  See beauty in the every day. Savour moments for what they are.  Things aren’t only special because they turned out how you planned it to be – what about the other people sharing the experience? Have you considered how they might like it to turn out?  You cannot impose your view of the world on everyone in it.  So go ahead, expect all you want, but be prepared to embrace whatever outcome presents itself.  Don’t be disappointed because it didn’t tick all your carefully planned boxes, look for a reason to celebrate the differences, because maybe, just maybe, the actual outcome is better than the one you anticipated if only you would allow yourself to see it.

Life is too short to be disappointed all the time becuase things don’t match up to your expectations.  How about just letting something be what it is, rather than what we think it should be? 

IMG_0909

 

Dear Daughter

Posted on by Bluemama

And so it begins; your transformation from the innocent, sweet, kind and well-mannered little girl we have known for 11 years, into the tweenage years where your personality is yet unknown.  Now is a time for metamorphosis as the child emerges from the cocoon as a young woman, eager to explore new things, make new friends, experience love.  What kind of butterfly will you be, my child?

This new chapter in your life has seen you make some questionable choices, and I am not sure how to best handle this stage in your development.  I want to protect you.  From everything.  But I know that’s just not realistic.  There are some things I can protect you from, but in protecting you I may just shake the foundations of our relationship for you will not like every decision that I make.  I want to guide you to be a better girl than I was, a better woman than I am now, a better mother than I could ever hope to be.  I am pretty sure that I am going to mess some of this up.

With today’s technology, I can protect you more perhaps than my parents were able to protect me.  I can track your whereabouts with an app, I can send you a text to check you are ok, and you can text me when you miss the bus or you need to let me know where you are.  I can implement parental control over your device to limit what you can see, and who can see you.  With your phone, we gave you freedom.  But that freedom came with a price that I am not ready to pay.  This week you said that you hated secondary school, that everything has started to go wrong since you moved up, and you don’t know why.  I would challenge that thinking.  What has changed is your access to the world through the use of a mobile device that seems to hold more importance for you than anything else in this world.  I told myself that the novelty would wear off, and that you could be trusted to use it for the right reasons, because you are an innocent, sweet and kind little girl.  What I didn’t take into account was the fact that I cannot control those whom you interact with when you are locked away in your bedroom attached to that device like it were a third arm.

Through modern technology you have had access to video sites where you have created idols from girls who show you how to apply make up which will make you look like someone else, taught you how to pout and how to create the perfect selfie.  Through modern technology you gained access to communicate with friends more than is healthy and at times when you should be doing homework, playing with your siblings, sleeping.  You have access to speak to friends, not just one at a time anymore, but whole crowds of kids speaking all at once. I no longer have privacy in my own home, and when you are chatting over these face to face forums everything I do is seen, everything I say is heard by those you are chatting with and anyone else who is in the room with them.  Who gave you kids the right to invade your parents’ homes? If you were to ask me if you could have ten friends in our home at 9 o’clock at night, the answer would be no. They may as well be here though, hadn’t they?

This week I had to remind you what your phone was provided for.  When you went to Gravity with people that I didn’t know, and I asked you to text me when you arrived so I knew you were safe, I expected you to do just that.  When you hadn’t text an hour later, and your phone was offline on so I couldn’t find you, I felt sick to my stomach and afraid that something might have gone wrong.  Nothing had gone wrong, except for your judgement and a lack of respect.  There was too much fun to be had to remember to text me to tell me you were safe.  While you were having fun, I was afraid, sick, and beating myself up for having let you go in the first place because I may have put you in danger.  You didn’t even think about me.  When did I become so unimportant?

When you got home, I confiscated your phone.  This week you only have your phone for school so that I know you can contact me if you need to.  You will learn to live without FaceTime, Instagram, Oovoo, You Tube.  You will remember what it felt like to be 11, before you got the mobile phone.  This week, your ‘boyfriend’ might just learn to live without you, and stop texting now he realises that for some time he was actually texting your mother.  This week, you might remember what it feels like to be nice now that you are not getting embroiled in the bitching and hatred that I have seen and heard.

This week I had to shatter your belief in your privacy.  Giving you a mobile phone was an act of responsible parenting to enable you to be able to make contact should you need to, to make sure we could keep you safe.  We did not promise privacy, and until you have grown and matured into the young woman that you want to be, that we want you to be, I will continue to keep a watchful eye over your interactions.  That means I will see the text exchanges between you and that boy who is already showing you what it means  for a man to treat a woman like a trophy, a possession.  I will read your messages to try and understand how you feel about his constant requests to kiss you in public.  I mean, what is all that anyway? What happened to boys and girls just being friends?  Why does everything have to be so premeditated? Is that this boy? Or all boys these days? I don’t like the artifice of it all, and I wish you were strong enough to stand up for what you know feels right in your heart.  I grew up insecure, needy, desperate to please others so that they would like me (particularly boys).  Luckily for me I was just not interesting enough to the opposite sex so I didn’t find myself in your position.  But you are beautiful where I was plain, quirky where I was odd, and funny where I was just plain annoying.  I wish you knew that well enough to know that you can stand up and be the person that you want to be, and screw anyone who doesn’t like it.

This week, I have gained some insight into the life that has been shut away behind a bedroom door for a while.  You got your first detention at school, and because you lost your homework for the second time, you are probably about to get another. I never had a detention in all my school years.  And if I had, I would have taken responsibility for my actions and accepted responsibility.  It was your fault that you laughed in class, and laughed again even after you were warned.  It was your fault that you didn’t do your homework and then blew your second chance at completing it through carelessness.  It is your fault that you choose to spend every waking hour on your phone or roaming the streets with your friends.  You know the score; the rules are simple.  A tidy bedroom and homework come before anything else.  If you choose to put your friends, your phone, or anything else before those things then you should expect to face the consequences.  This week those consequences have gone into full force.

This week, I have also seen the cruel games that some of your ‘friends’ choose to play.  I have answered your phone to the prank calls, and received the texts that are quite blatantly aimed at trying to get you into trouble.  But do you know what?  However disappointed I might be in some of the choices you have been making, I love you.  I will have your back for as long as you deserve it; do not let me down or make a fool of me.

When I gave birth to a daughter, I made a promise to myself that if I had to tell you every day that you are beautiful and smart to ensure you grow up with the confidence I lacked as a young girl, then that is exactly what I would do.  I broke my promise.  I have too often knocked you down for your choice of clothing when I should have let you express yourself how you chose.  I have too often told you that you are rubbish at a subject, or stupid for not being able to keep your bedroom tidy.  I have underestimated you many many times.  I have been hard on you, telling myself that it is because I don’t want you to turn out like me.  But am I really that bad? Maybe what I did was push you towards other people that build you up where I knock you down, and now those people have more influence on your life than I do.

I want you to choose the path you are going to walk as a young woman.  I hope you choose a good one.  I want you to choose to do the right thing by me, rather than doing the wrong thing and concealing the truth;  I always know when you are lying.  I want you to make mistakes, but take responsibility and learn from them.  I want you to believe in yourself and not be ruled by how others want you to behave.  I want you to concentrate at school, to ask for help, to want to break this mould you have made for yourself; you will find your niche and you will be brilliant.  I want you to appreciate the world outside of the realms of your mobile phone; there is a whole life happening out here that you are missing out on.  I want you to know when to stay silent against the bullies and the mean girls.  I want you to stand up for the underdog, just by being at their side.

Most of all I want you to love yourself half as much as I love you.

If you continue on your current path, I can tell you there is going to be heavy turbulence ahead.  We are already starting to feel it.  But there is time for us both to change.  This big change in your life has gotten you a little lost, but you are in there still, and I will do everything I can to encourage that innocent, sweet, kind and well-mannered little girl we have known for 11 years to come back out.

I’m sorry if I left you somewhere along the way, little ‘Bean’.

IMG_0426
Back when there was just us

 

Someone Else’s Story

Posted on by Bluemama

If ever there was a story that reinforces the need to raise awareness of Kawasaki Disease, then it is the one I will be sharing with you tonight in a blog that is very different to my usual writing; today I am giving you someone else’s words.

This is Max’s story, shared on Social Media today by his mother, Maryann, a woman with more strength than I could ever hope for.  Like me, Maryann is committed to sharing Max’s story to raise awareness to help prevent future misdiagnosis, and to pay something forward; to make our children’s suffering at the hands of KD worthwhile.  Unlike me, Maryann’s journey ended with unimaginable heartbreak.  She has given me permission to share her post here in my blog, and I have therefore copied without edit for you to read, just as I did when I awoke to the post this morning.

Today’s blog is written in support of all the children who have suffered with this devastating illness.  It is written in memory of the Mighty Max Rocklin.

“I am only doing a condensed version of what happened last summer.  June 22, 2014 Max complained of his belly hurting around his belly button. The next day he complained of having a pain on the right side lower abdomen and started running a fever. I called his doctor and she wasn’t in. So I gave him Ibuprofen and watched him. Tuesday morning he woke up with his left hand drawn up and his face felt numb. So I took him to the first emergency room. They said he has appendicitis. They couldn’t handle that there. So he was transported by ambulance to another local hospital. They did an ultrasound of his belly. His illium, small intestines and colon was inflamed. So the surgeon there said Max needed to go to a children’s hospital. They couldn’t transport him until the next morning. So he was admitted to the hospital. They wanted to do a ct scan with conarast. So that was done. He still was running fever and hurting.
Wednesday morning Max was transported, by ambulance, to a hospital 4-5 hours from our house. The ambulance started smoking on our way there. So they had to pull off the highway. The airconditioner stopped working. They had a small fan to blow on Max. They decided to throw on the lights and sirens and speed there. We got to the hospital and saw 2 doctors. One was certain he had Crohns disease. (Max NEVER had diarrhea) They wanted to do an endoscopy and colonoscopy. So he had to drink these huge cups of myrilax. He couldn’t drink them. So they said they would have to put an NG tube down his nose into his stomach. My mom went for a walk at that time. I stayed with Max. They didn’t sedate him. I had to watch my sweet boy scream, “Help me momma!” over and over again. When they were done. I tried to comfort him. He said, “No don’t touch me.” He was upset because I couldn’t help him. That totally broke my heart. He had wires everywhere. He started having diarrhea from the myrilax. So I had to carry him to the bathroom because he was so weak. I would undo all of his wires, pick him up, carry him and pull the iv pole with us into the bathroom. I would have to sit in front of him so he could lean on me. He would hold on tight and pat my back. God I miss that sooooo much!
The doctor continued to say he had Crohns because now he had diarrhea. Um, he didn’t have it until they gave him myrilax!!! He was also tested and it came back that he had C Diff. A contagious virus that comes from dirty hospitals! So we were quarantined to the room. I had to bleach everything in the room if we touched it. Mom and I could leave the room as long as we had gloves and a gown on. This was for almost an entire week. I think it was Thursday that they did  the endoscopy and colonoscopy. Nothing showed Crohns! By this time Max had bright red eyes, a rash from head to toe, red spots under the skin on his palms and feet, feet, legs and abdomen swollen, his feet were peeling, his fingers were peeling and his pinky nail was coming off.I argued with so many doctors, interns, nurses, etc. NO ONE would listen to me! They always had an aswer to why these things were happening. His white blood count was through the roof!!! He had chest pain several times. They would just give him more morophine.
He was on Iv’s, morophine, vancomyacin, ibuprofen, benadryl, etc. By July 3, 2014 they said he could go home because his white blood count was down. So after 9 days in the hospital they were sending him home with antibiotics.My thinking was his blood work looks better so let’s take him home. Sometimes people get better at home. On July 4 Max got his bunny we promised him in the hospital. He was still so sick. So he slept with us. He lost 7 lbs in the hospital so he looked so sick. I started him on pediasure and fed him whatever he wanted. He started looking so much better.
July 12 he wanted to play outside for a few minutes. So we said ok because he was doing so much better. About 15 later he came in with chest pain. It didn’t get better so we took him to the emergency room. They said he needed an echocardiogram but couldn’t do it because he was a child!! The doctor said it was probably just indigestion from the prednisone. But the same doctor wrote the word Kawasaki across the top of the dicharge papers. We were sent home. I called the dr 4-5 hours away. She said to give him tums. He started feeling better. The next day he was going down hill. So back to the ER. The doctor said we had to get Max back to the hospital 4-5 hours away. So we waited for several hours for transport. We got the same ambulance with no air. We got to the hosptal at 1:00 am. So Max and I got in his room and we laid down. July 14 he had an echocardiogram. I thought there would be nothing. But the cardiologist had this horrible look on his face. He told me that Max had 4 aneurysms in his heart.1 normal size, 2 medium and 1 was the biggest they had ever seen in a child. He also had a blood clot to the main artery of his heart. The room spun, my chest was pounding, I kept thinking, “NO you are wrong!” I didn’t let Max see me upset. The cardiologist said, “Max has Kawasaki Disease.” What? I had never in my life heard of something like this. Why wasn’t my son diagnosed sooner? So 22 days after he started getting sick he was finally diagnosed. I called my mom, dad and husband to get to the hospital. The doctor was talking with a specialist in San Diego. They wanted to transport him in a private medical jet to San Diego. But they couldn’t because of the blood clot in his heart. He was put in ICU.  So they gave him coumadin to try to break it up. So the coumadin caused Max to have 4 hour nose bleeds. So iv #4 was put in to give him blood. His veins were so weird that the pic team had a hard time getting a vein. He would scream and cry when they would just flush them. He had 2 iv’s in each arm. I would have him look into momma’s eye and count with me. It would calm him down.
Tuesday July 15 Max got really scared. He said he saw glitter all over the room. All over Stephen and I. We figured that it was angels visiting him. At this point I still didn’t have it in my head that my baby could die. He kept having nose bleeds. But he was a little better. He wouldn’t eat or drink much.
Wednesday July 16 he wanted Chick Fil A. So my dad and Stephen went to get him some. He took just a couple bites. He played on his ipad and listened to music. Stephen and I wanted to take a shower. So we wentback to my parents hotel while they stayed with Max. I had a horrible feeling. I told Stephen we had to hurry.We saw Dunkin Donuts on the way back so we got him 6 donuts! He was asleep when we got back. My dad said he had a nose bleed the entire time we were gone. My parents went back to their hotel. Stephen went to lay down so he could sleep while I stayed up with Max. The ICU nurse came in and said Max needed some meds. So I first took some pictures of him sleeping because he was so stinkin cute. Then I woke him up. He took his medicine. I sat him up in the bed and told him I had a surprise for him. I put the donut box on his lap. He smiled the prettiest smile ever!! He took a bite and said, “How many can I have?” I told him all of thim if he wanted. About half way through his first donut (he still had a bite in his mouth) he looked up at me and said, “I’m tired momma.” I said, “I know baby. It’s ok. I love you.” He layed back and went into a severe seizure. I yelled for help. I watched my precious boy ball up. I watched his eyes roll in the back of his head. I watched him twitching around. I saw him take his last breath. The nurses started cpr right away. I called my mom yelling, “He’s gone. My baby is gone!!” Stephen woke up to the yelling. The icu room filled up quickly. They made a line between us and Max so they could take turns doing cpr. I could still see my baby. I watched them intubate him and his loose toothe fell out. I don’t remember parts of that moment. I was told that I prayed so loud they could hear me throughout icu and the waiting room. I begged God to perform a miracle! I begged God to take me instead! I begged and begged to give me my baby! I prayed for everyone who was touching my son to see a miracle in all of this. I remember bartering with God. I remember hearing the doctor shout out orders to everyone. A surgeon came in and said they needed to do open heart surgery. I signed the paper and thought they would take him to the OR. No….they did it right in the ICU room with us there. They tried to make a wall between us and him but I saw what they were doing to my baby. At 11:55 pm a lady came over and said the machine was breathing for him. “There is nothing else we can do.” So Stephen told them to stop. I sat there in complete shock. It felt like a horrible nightmare. They cleaned Max up and wrapped him in a white sheet. They handed him to my dad and my dad handed him to me. He was so warm. How could he be gone? I felt his chest….no heart beat. I tried moving him thinking he would wake up. He didn’t. I could see his beautiful blue eyes. I rubbed my hands through his hair, counted the freckles on his face, felt his nose, eyes, lips cheeks, ears, hands, fingers, arms, feet, toes legs and whatever I could. I held him until he was ice cold. Then Stephen got to hold him. I saw that Max’s face was dirty so, like all mothers do, I licked my finger and cleaned his face. We had to go. So my dad took Max and placed him back on the table. I kissed him so many times. I didn’t know how to leave without my son. I am a VERY protective mom! I wanted to stay with him and make sure he was being treated good. But I had to leave the hospital without my baby boy. I didn’t know how long it would be until I saw him again. We had a 5 hour ride home.
I had to call Stevie to tell him his baby brother died. Call Red Cross to get Stevie a flight home. Stevie had to get a loan to fly home. Red Cross doesn’t pay for them any more. I slept the rest of the way home. When we got home we had to tell Nick and Corey. I hate that my boys had to go through all of that pain!!!
Maxwell Joseph Rocklin passed away on July 16, 2014 just 5 days before his 8th birthday.
Max was the funniest, cutest, smartest, toughest, loving, caring, giving, beautiful and handsome little Super Hero. He may have been littlle but he is MIGHTY!
His funeral was the day before his birthday. I wanted it to be a child’s funeral. So in the plants and flowers were Super heros.There were balloons. Some friends made super hero posters with Max’s pictures all over them. They also made superhero pins. We wore super hero tshirts. The night of his viewing a dear friend and his son dressed up at super heros. The day of his funeral my cousin’s husband dressed up as a super hero. The funeral home was packed full. I had several dear friends sing for Max. Rev Christ Turner did an amazing job also. I was in such a daze. I don’t remember the faces of everyone there. I just wanted to be with Max. I wanted to constantly rub my hands through his hair, kiss him, and tried to hug him. I knew those were the last moments I would ever see my baby boy on this Earth again!
Since Max’s passing we have recieved so much love and support. I can’t name everyone and everything they have done. Literally there is hundreds of people that have been here for our family! Max is loved by so many! He made me so proud of him. The selfish part of me wants him back no matter what. But if Max had lived he would not have been able to be a regular little boy. He couldn’t over exert himself, had to wear shoes even in the house, one little cut he could have bled to death (From the coumadin), he would have to stay away from anyone who was sick. I forgot to add that Max had several heart attacks while in the hospital and at home. He would just say his chest hurt. They never did an xray or anything the first week he was in the hospital. Max has saved so many lives since he has gone to Heaven. I prayed for a miracle and for Max to be healed. This was not the miracle or healing I wanted. But it is what God knew Max needed. Believe me that is hard to say. I love Max so much that I am thankful he is no longer in pain. But I want to hold my sweet boy. I want to hug him. I want to be his mommy. I always will be. But not the way I want to.”
I would like to thank Maryann for allowing me to share her incredibly sad story.  My heart has known the pain that this disease can cause, but my heart will heal with every breath that my daughter takes.  There will never be enough words to express my sadness that Kawasaki Disease took her son from this world, or any of the other children who lost their battle.  What I do know is that stories like these will serve to ensure that I do not allow myself to take one second of this life with our daughter (and her siblings) for granted.
And every month, on the 16th, I will try to remember to pay it forward for Mighty Max.
image1
Top Left: Maryann created a banner bearing the names of all of our children, with the top spot proudly bearing her son’s name Top Right: You can make out Freya’s name on the banner Bottom: Max lost his battle with Kawasaki Disease on the 16th July 2014. On the 16th of every month his family ask that you take a moment to pay it forward – do something nice to brighten someone’s day, in honour of the Mighty Max

Flashbacks and Intrusive Memories

Posted on by Bluemama

As we move further away from the traumatic experience we had with Freya during the acute phase of her illness, it seems that I become more and more affected by what we went through.  If you’ve been reading my blog you will know that I recently received a loose diagnosis of PTSD, and am about to embark on treatment for that.  I was given a choice in relation to the treatment that I wanted, based on which element of my current state of mind that I wanted to tackle.  I can have talking therapy to help me get out all of my thoughts and feelings, or I can have specific behavioural therapy and EMDR to deal with the flashbacks.  I still don’t think I really know what route I want to take; I think I’d like to have the opportunity to do both.  We will have to see about that at my next appointment, I guess.

I’ve had a week or so of feeling pretty positive about life in general, getting to grips with the Christmas shopping and starting to look forward to the festive season, but at around 4am this morning, my happiness was rudely interrupted by memories of darker days.  But what is a flashback?  And what makes it more than just a bad memory or an intrusive thought?  I experience all three of those things, and I’m starting to recognise the difference.

Freya awoke at around 3am this morning, which is unusual for her as she usually sleeps through without a whimper until about 7:30am.  Some would say we are lucky it is unusual – the problem with that though, is that I’m just not prepared for it and don’t really know what to do when it happens.  Do we ignore, and hope she goes back off to sleep?  Should I change her nappy? Feed her? Take her into our bed?  I chose to change her nappy, and cuddle up with her in my bed in the hope that she would fall back to sleep.  After about an hour of convincing herself that 3am was the new playtime, Freya yawned! I seized the moment, and placed her back in her sleeping bag in her cot, which is still by the side of my bed (I haven’t quite reached the point where I am ready to put her in her own room).  Despite it being an unearthly hour, I switched on the butterfly that casts stars across the ceiling, and squeezed the tummy of the seahorse that would hopefully sing her to sleep.

And then it happened.

Lying there in the dark, with the outline of her cot just visible in the moonlight and that seahorse playing all too familiar lullabies, I was engulfed by a wave of nausea, and I felt the wetness of tears rolling down the side of my face before I had time to realise that I was crying.  My throat closed up, and I felt that my breath was caught somewhere in between my stomach and my lungs, and I thought I might actually be sick.  Suddenly, I wasn’t in my room anymore.  I was in a hospital cubicle. Cold under the hospital-issue blankets, I pulled them up under my chin and shivered.  Freya was wearing just a nappy and she was so, so hot.  She lay in a nest of blankets made both to make her feel secure, and to stop her from sliding down the cot which was raised at one end.  She hadn’t needed anything to soothe her at home; all she needed was me.  In here it felt like she needed something of her own that she could become familiar with, and so I had instructed her Daddy to buy the pink seahorse on the way to visit at the hospital one morning, and at every nap time and bedtime it’s little tummy would get a squeeze and soothing melodies mixed with sounds of the sea would pour out as it glowed reassuringly in the darkness.

IMG_5243

She’s gasping for air, but she won’t open her mouth. She looks like she is drowning.  Open your mouth sweetie, open your mouth.  I panic, jump up, hit the red button, a nurse appears.  A face mask is fitted, attached to a saline nebuliser to help clear Freya’s nasal passages, and she settles down.

I don’t want to wake up.  I don’t want to wake up because I am convinced I am going to see her there, looking at me with a faraway stare, lost and frightened and too sick to smile. I don’t want to wake up, because I know it won’t be long before they come to take more blood and she will cry until they’ve squeezed enough to fill 4 vials out of her little heel.  I don’t want to wake up because today I will be too scared to pick her up in case I upset the cannula in her  head, or her wrists, or her feet.  I don’t want to wake up because we will be alone and scared.

I wake up.  She’s crying.  That’s unusual for Freya; we are usually woken by beaming smiles and sounds resembling a bright “Hiya!” from her cot. I open one eye, she sees me.  She smiles.  She is snug in her sleeping bag, pink from the warmth and she looks at me with sparkling eyes.  Eyes that say, “We’re home mummy, we’re okay.”