Wicked #4oscar

Last night I went to see a musical. This isn’t a big surprise to anyone that knows me; I see them all the time. I went alone. Also, not a surprise or something I consider brave, since I do that all the time as well.
I went to see Wicked, which you may have had a clue about given the title of this blog.

Wicked is one of my favourite soundtracks. “Defying gravity” is the most played song on my ipod, with “The Wizard and I” in second place. I mentioned in a previous blog that I adore the Wizard of Oz, so it may come as something of a surprise that until last night I had never actually seen Wicked.
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Before 2014, I just hadn’t got around to it, and then after that date (ie, when Oscar was born and died) well as i mentioned in my previous blog post I started avoiding all “Wizard of Oz” related things.

That was, until this month, until i decided to be brave #4oscar.

You may think that going to a musical, that I adore the soundtrack to, and have wanted to see for years isnt that brave, but do you know who it is currently staring as Glinda?

Sophie Evans.

Do you see the connection yet? Probably not, since until this point, I may actually have been the only person who knew this;

When we picked “Over the Rainbow” for Oscar’s funeral, I believe I listened to every version that existed. I had this idea in my head of how I wanted the song to sound, and I also knew that I wanted those extra lyrics at the start:

“When all the world is a hopeless jumble
And the raindrops tumble all around
Heaven opens a magic lane

When all the clouds darken up the skyway
There’s a rainbow highway to be found
Leading from your windowpane

To a place behind the sun
Just a step beyond the rain”

which the Judy Garland version’s I found didn’t have. Then I found Sophie Evan’s version. She was a finalist on the TV programme “Over the Rainbow” and had released it after the show ended.
That was the version that played at Oscar’s funeral. Her version somehow matched up with exactly what I had in my head.
When she took over the role of Glinda last year, I didn’t think I was brave enough to hear her sing live. Because, she has no idea (quite rightly so) that I used her song at by Baby’s funeral. So, I assumed I wouldn’t see Wicked until at least the next cast chang. That was until, I vowed to be brave #4oscar. Then it just seemed appropriate that I saw Wicked, with Sophie Evans, in April.
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Because, sometimes being brave isnt about big challenges, because sometimes it doesn’t matter if no-one around you even knows you are doing something brave. Sometimes being brave is just about challenging yourself. Sometimes, its just about knowing yourself that you did something you didn’t know you could.

And, though this isn’t a review of the show I can’t resist the chance to say:
It is beyond amazing! The current cast sound so much better than the original broadway stars, and, though I was already a fan; Sophie Evan’s hits notes that I didn’t think were possible!
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Catching Up April 4th-11th

So, this year i have failed to keep up with my daily blogs on Oscar. I’d love to say I have a good reason, but I guess i’ll let you be the judge;

In order for me to write Oscar’s Story, I have to re-read my old blog posts. There is no way that I will remember the details of each day four years on. In fact, i’ll confess that mostly all the PICU days in the middle of Oscar’s life have blended into one. I tried to make Oscar’s Story honest and full of details. It isn’t an easy read for a stranger. But, I’m not a stranger; I’m Oscar’s mother. And while my blog is called Oscar’s Story, I am very much aware that it is mine as well. I lived through this.
While I try to add humor and a postive twist to my posts, it is actually a story about a baby who was born to die. A baby who lived 23 days, most of those attached to a ventilator in a PICU. It is the story of a baby who had open heart surgery. It is the story of a baby who died. It is not a happy, positive story. And to re-read each post means that I remember every moment. That I remember that story. And most of the time that involves me writing whilst I can’t actually see the screen because of tears.

But, Oscar’s story is one that I always wanted to tell. It is one that I will continue to want to tell. It may be a story that makes me cry, it may be one that upsets me, but it is also the story of my baby. And as much as telling Oscar’s story can hurt, I wouldn’t give it up for anything. I will never tire of talking about Oscar. I would never want to give up re-reading and remembering his story, it’s just sometimes it takes me more time than I expect to find the courage to do so.
April 4th 2014 was the day Oscar’s had open heart surgery. The day started with a plan to do a procedure where a catheter would be passed through Oscar’s groin to his heart. The plan was to essentially open a hole between the top two chambers of his heart and to add some bands to his pulmonary ateries, both of which would hopefully allow his heart to work more effectively. In typical Oscar fashion, he didn’t follow the plan.
We spend the day waiting around and when we finally got that call to say the procedure had been completed, we were then told about the complications. During the procedure, Oscar had a Cardiac Tamponade, which resulted in him having to have open heart surgery. I know that he had a blood transfusion in theatre, what I don’t know is whether his heart actually stopped and just how close we came to loosing him that day.

When Oscar came back from theatre he was on a Ventilator and surrounded by tubes and wires. I’ve said before that I was actually scared to go near him at first. If i’m honest, i’m not sure that I actually recognised him as Oscar. I don’t think there is any amount of preparation that you can do for seeing that much of a dramatci change in your baby in just a few hours:
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When Oscar came back from theatre it was also the first time that I felt we had the right to be in the PICU. That seems like a strange thing to say, but before that, Oscar just looked so much healthier than the other babies and children.

April 4th was also the last time we saw Oscar without sedation. From the moment of his surgery until he died he was kept sedated. As the days past, this was reduced and he became more alert, but he was never as alert as he had been at birth.

I had to wait until April 6th before I saw Oscar’s eyes open again:

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and to have my first post-surgery cuddle with him:
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The more Oscar was weaned from the medications, the more comfortable I became around him. This was probably because I was becoming used to the whole PICU experience, but i like to think it was at least partly because we were seeing some of Oscar’s personality, like him grabing at things he shouldn’t touch:
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As the days went on I also starting taking more photographes. I’m not naive, I know they aren’t the prettiest to look at. I know they show a very sick baby, but they show my baby. There never became a point where I didn’t see those tubes and wires, but there definetly became a point when I accepted they were part of him. Take the photo above, most people would see the ventilator first; I see those tiny fingers holding that label.

April 7th 2014 was the day Oscar was supposed to go back to theatre, to complete the operation that was started on April 4th. That didn’t happen. Ironically, for the baby with the heart defect, his heart was actually stable. It was his kidney and lung function that prevented that second theatre trip. We were now playing a waiting game to see what Oscar had planned next.

By April 8th the likelyhood of Oscar being able to go back to theatre was dimming and so while that was bad news, the postive side was that Oscar’s level of sedation kept being lowered so he was more alert.
It was the day we discovered “Oscar hand”, which is what we named the strange ways he liked to position his fingers:
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April 8th was also the day that Oscar became “baby Superman” a nickname that stemmed from socks bought by his Grandad:
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which got comments from everyone. Actually Grandad bought several pairs of socks, but these were my favoutites. It should be noted though, that as cute as the socks were; Oscar’s superpowers were all him!

By April 10th we were still playing that waiting game, and Oscar chilled with the cuddly friends that seemed to be multiplying in his bed:
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On April 11th we were moved to another bay in the PICU. It was a procedure and a half and there was a complex plan in place to move the 30 meters across the room (mostly because Oscar had to be disconnected from his ventilator and a member of staff had to use a bag to manually ventilate him. This is actually the one plan that Oscar actually followed, even if he showed suspicion beforehand:
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And, that gets us up to date. My old posts from last year have much more detail (and probably more photos as well) but above is kind of the short version.

In an earlier post I planned to do 23 brave things #4oscar in the month of April. I still plan to complete them, bit since i’m planning some of them to be a little bigger than I orginally imagined, and would like to involve other people (they may not know this yet; watch out family!) I will be extending my time frame. Still, I guess that seems fitting since Oscar never followed a plan either!

 

 

Bye Bye Hair! #4oscar

In the early 1990’s my Mum (who is a hairdresser) cut my hair to chin level. My hair is thick. My hair is very thick. I looked like I had a bowl on my head. As all bad hair cuts do, it eventually grew out and since then my hair has always been long…just never this long.
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In 2014 on Oscar’s first night in the PICU a nurse named Ros planted an idea in my head. She had just had her hair cut and donated to the Little Princess Trust. She suggested I could do the same, and since that day it is something I have thought about but never done.
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You see, I like my hair. Actually, I love my long hair. It is probably one of the first things people notice about me and it is a huge part of my identity. If I cut my hair, it would be like loosing a part of my identity. I’ve already to a certain extent lost the mother part of my identity, could I actually be ok with loosing another part?
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In the PICU, on April 12th Oscar had his first haircut;
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His haircut was literally life saving. He needed to take many medications each day to stay alive, and each had to be given intravenously. He was running out of access points on his hands and feet and so his head was where the next line had to be put in. In order to do this part of his head had to be shaved.
My hair, while I like it, isn’t a necessary thing for me to have. The Little Princess Trust uses donated hair to make wigs for people up to the age of 24 who have lost their hair due to illness. My hair could give someone a wig that could improve their self-esteem. It can’t give them back what they have lost, but it can give them something to make them feel better. And just maybe, it may help a parent to see a smile on their child’s face.

My hair doesn’t have any medicinal benefits, but sometimes medicine isn’t the only thing that can help those that are ill. When Oscar was in the PICU i couldn’t hold him very often, but I spent a lot of time holding his hand. I think this was comforting for both of us. Maybe my hair help provide something comforting to another child and their parent.
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Over the course of Oscar’s lifetime his medical conditions meant that he changed dramatically in appearance. When he was born he looked like any other newborn from the outside:

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but by April 11th, he looked so much different:
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No matter how much he changed in appearance, and declined in health he was still Oscar. Nothing could change that.

So, I realised that I had something that could improve someones life. And, as much as I liked having it, I wouldn’t really be any different without it. I decided that, 4oscar, i could be brave:

Today, I had 35cm of hair cut off to donate to The Little Princess Trust #4oscar

Change can be quite dramatic, but it can be good:
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Things no-one tells you about the PICU

April 3rd 2014 was the first full day we spent in the PICU, or as I prefer to think of it; Oscar’s home. I had no idea what to expect, since all my previous intensive care knowledge had come from watching medical dramas on TV. And let me tell you, it’s not really anything like that.

For a start, no-one tells you, that you have a nurse watching you all day, every day. I mean, they were actually watching Oscar, but since I was sitting beside Oscar’s bed and they were at the bottom of it, you basically have no privacy. They pretend they aren’t listening, but there is no way they can’t hear every word you are saying.

Then there is the fact that I was a first time parent, who had no idea what they were doing anyway. And now I had someone else, who was responsible for my son. I remember noticing one day that he has a sharp area on one of his finger nails. I had no idea whether I was allowed to sort that or not. Let’s face it, a first time parent at home may well have just bitten the nail…I’m pretty sure infection control means that is frowned upon in the PICU. Incidentally, I’ve no idea what happened to that sharp piece of nail…obviously that wasn’t an important memory to hang on to.

In the PICU it doesn’t feel like your baby is your own. Someone else decides when his nappy needs changing, when he can have a wash, if he needs to be repositioned. I know they are trained, and yes, they do get you to help…but that’s what you are doing; helping. You aren’t really caring for your own child.

I couldn’t breastfeed Oscar, but at first I was pumping for him. They provide a room for this; a room with three electric pumps all lined up, so multiple people can use the room at once. Again, first time mum here…I don’t care if it’s other Mum’s in the room, communal pumping is not a fun, bonding experience. Then you have to walk back into the PICU with this bottle of milk that the nurse at the bottom of the bed puts a label on and then takes to the fridge/freezer. And the whole time you wonder if she is judging what is in the bottle. Is my milk the right colour? The only milk I’ve ever seen comes from the supermarket, and my breast milk wasn’t that colour. I’ve still no idea what colour it is supposed to be, but they did give what I pumped to Oscar so I’m guessing it was okay.

Oh, and if you are breastfeeding in the PICU you get meal vouchers provided for the hospital restaurant, like some kind of weird reward. When Oscar had a complication which meant breast milk wasn’t suitable for him (chylothorax) I stopped pumping and had to start paying for food. I know breastfeeding Mum’s are supposed to need extra calories, but it just seemed a weird system.

You will become obsessed with the numbers on the monitors and you son’s bodily fluids (like, you will take a picture of the contents of his catheter obsessed) and yet will learn how to tune out the background noise that all those monitors make so easily.

You keep hoping you get moved back to the bays by the windows, not because you like the view, but because you get better mobile signal and as much as you are focused on your child, you kind of miss interacting with the rest of the world. I actually have no idea what happened in the world in April 2014 outside of anything connected with Oscar.

PICU chairs are all uncomfortable and some are more so than others. Other parents in the PICU will think nothing of stealing your chair while you are having your lunch which clearly demonstrates great infection control procedures! And pillows, in the PICU pillows are like gold dust. If you get one, do not let it out of your sight.
You will especially notice how uncomfortable the chairs are if you have given birth under a week ago and have stitches in place. My experience is that it will be your husband who complains more about the discomfort of the chairs though!

Speaking of having given birth; when your baby is moved to the PICU and that is in a different NHS area from where you gave birth, your own aftercare will get forgotten. Your legs will be swollen and leaking fluid, you will have no idea whether you are supposed to be passing clots and while you know you have stitches, you have no idea what you are supposed to do about them….Being good at problem solving, I walk around the hospital going to various departments looking for someone willing to check my bits. Eventually I do get a check-up and everything is ok, but on checking my blood pressure they ask if I am stressed… Um….
Four years later and I still have my hospital delivery notes. I figure I was supposed to hand them back to someone at some point, but i’ve no idea to who. I wonder if that means I was never officially discharged from post natal care?

In all honesty though, it sounds weird but I loved that PICU. It was Oscar’s home and without the staff members that were working there, we wouldn’t have been able to create so many of the positive memories we did with Oscar.
I don’t actually think of any of the above as negative; it was all just part of the experience. And, to be honest so much was happening and nothing was what we expected or planned, that I learned to just go with it.
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In 2014 we met a PICU nurse named Ros. In 2015 I posted that when we met her in 2014 she’d just had her hair cut and donated it to be made into wigs for children. She commented that I should consider doing the same with my hair. Remember my #4Oscar challenges? This is a big clue as to what one of them will be. (It’s not subtle clue at all, is it!)
I’ll let Ros explain what happened in Oscar’s care on April 3rd 2014:
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Fighting alongside Oscar

On April 2nd 2014 I chose to allow people to inflict pain on my newborn baby. I voluntarily allowed people to stick needles into him and allowed them to hold him down in order to do so. They were medical professionals and they were doing medically necessary procedures to give him the chance of living longer. That didn’t matter. That protective instinct skill kicks in and I had to literally sit on my hands to stop myself from pushing them away from them even though I had given them consent.

It’s a strange feeling, that giving consent for your child. You, of course, want to do what is best for them, but sometimes you don’t have that much time to make an informed decision.

We started April 2nd doing comfort care for Oscar, in the SANDS room in our local hospital, basically waiting for him to die. Given that we were told that Oscar would die before or shortly after birth and that if he was born alive, he would struggle to breathe I don’t think anyone expected him to still be breathing unaided over 24 hours later. It wasn’t the first time and it wouldn’t be the last that Oscar didn’t do what was expected. I feel now like he was kind of saying; “I’ll show them!”

Unknown to us at the time, the staff in our local hospital had been speaking to the medical team at the specialist hospital. They came to us with a choice;

1. To continue doing as we were. Either in the SANDS room or we could be transferred to a local hospice.

or

2. To go to the specialist hospital for a second opinion. They could run tests on Oscar to see if they could find out why he wasn’t behaving as expected. If we took this option there was a small chance that they could do something medically to give us more time with Oscar.

Option one was what we had decided before he was born. It was the option that we had prepared for and the one that felt right for Oscar. However, it was actually option two that we chose. The biggest reason for this was because I needed to know why he was able to breathe. I needed to know why he hadn’t declined in health as quickly as they said. Ironically this was the question we never actually got the answer to. When they x-rayed Oscar’s lungs in future days they discovered that his heart condition had meant they hadn’t formed properly. I think of it like trying to breathe with concrete for lungs. We’ve still no idea how he actually managed to breathe for so long unaided!

Something which we were sure about before Oscar was born was that we wouldn’t change out minds. When we chose to have him at our local hospital we knew that they would not have the facilities to care for him when he was born if we changed our minds. It simply wasn’t going to be an option….until it was.

Deciding on comfort care was not a decision we reached lightly, it was just the only option we had. To be told on April 2nd that the other option was suddenly open to us again was terifying. I can remember holding Oscar and literally crying and shaking. We should have needed long discussions, we should have discussed the positives and negatives of each decision. We had a brief discussion, but that was all. All i had to do was look at Oscar’s face and the decision was made. After all, you’d have to give any baby who looked at you like this a chance:

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The decision was obvious ours, as his parents, but a big part of me likes to think that Oscar actually made his own mind up.
It was like, since the moment he was born he was saying; “look what I can do” and “I am stronger than you think.” And, he was right.

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Born with half a heart and damaged lungs, given a close to 0% chance of survival and yet he was still breathing unaided a full day and a half after he was born…that’s pretty amazing and special I think. And if that doesn’t show that he was fighting, then I’ve no idea what would.
I think holding Oscar that afternoon, when we said we wanted option 2, was when I really realised that Oscar and I were in that fight together. He showed me how strong he was, and that meant that I had to let those medical professions prod and poke him to give him that chance to fight. That for as long as he was prepared to show me he was still able to fight, I would make all those difficult decisions with ease. I would fight alongside him, and we would do medications, surgeries, machines and all those things that we didn’t think were options just a short time before.
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And four years on, I am still so proud of that fight he put up!

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And I will fully admit that it’s the eyes; those eyes could have convinced me to do anything!

Sushi and Squid #4oscar

On April 2nd 2014 Oscar moved from being a baby who was breastfed to Nil by Mouth and on a drip. This was necessary to transport him from the local hospital to the specialist hospital by ambulance and then remained so because we didn’t know at what point, if any he would be having surgery.

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It seems appropriate therefore that today my challenge #4oscar is related to food. Now, food is somewhere where I have issues anyway; I have several intolerances which mean that I can’t eat foods I do like (most of these developed as a kind of after pregnancy side effect so thanks Oscar!)
You may think, given this, finding a food I haven’t tried, but know I can eat (well probably!) would be a bit of a challenge. I actually had something in mind right from the start; Sushi. I like fish, I like vegetables and I like rice so not much of a challenge, right? Wrong! I have issues with different textures combining (I gag on yogurt with lumps in for example) and the idea of Sushi freaks me out. Plus; raw fish! I really like my food to be a little more than barely dead.  I’ve avoided Sushi for years and would probably have continued to do so had it not been for this challenge. There’s no point doing things that aren’t going to take me out of my comfort zone. The entire point is to be brave.

So, a trip to the Supermarket today and I find that they don’t stock Sushi made with raw fish. They had other fish and vegetable sushi though so I bought that. It’s my challenge so I could have got away with that. But…I feel like I’ve taken away a part of the challenge. Then I spotted something else. Now, if you’ve read the title of this post you may guess what that is…I’ll wait while you scroll back up…Calamari…which google tells me is Squid. Now, looking it in the pot honestly made me feel a bit freaked out and so let me tell you googling images of Squid did not help this.

So, yep….today to challenge myself I’m going to be eating gross looking foods! Look:
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Actually I suspect that for a lot of people this would look like a nice food selection, but for me this doesn’t look appetising!
I mean just look:
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It’s still got a tail!!!
I considered doing a video of me trying each item, but no-one really wants to see that.

Ok, so i tried:
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The Sushi and the prawns (which admittedly I have had before) aren’t bad, but the Calamari….I tried to give it a fair chance….I was thinking “It’s just pasta, just pasta”…it’s chewy, and kind of….well it’s like flavourless rubber! Still, at least I can say that i tried it!

Think I need to go back to eating Easter Eggs now!

 

Oscar Zoroaster Phadrig Isaac Norman Henkle Emmannuel Ambroise Diggs, #4Oscar

That is a mouthful of a name and you will be relieved to know not exactly what is on Oscar’s birth certificate. It is, though, the full name of the fictional character that he was in part named for. Don’t recognise the character? You may if I tell you he is more commonly known as “The Wizard of Oz.”

For this to make sense we have to go back to the late 1980’s when I was at primary school and in the school choir. It is there that I first heard, and fell in love with what remains to this day one of my favourite songs; “Over the Rainbow.” This was made famous by Judy Garland in the film “The Wizard of Oz”, but the first time I remember hearing it i didn’t know this, I just liked the song.
I can’t really sing, but it is something that I love to do. In that choir when I was singing that song, I really felt like anything was possible. Perhaps my Mum should receive an apology now, because I’m sure I spend a fair amount of time attempting to sing that song in my bedroom as well!

I don’t remember the point when I first saw the film. I never really remember a point where it wasn’t one that I loved, so i was probably quite young. It’s always been one that I’ve never tired of watching (which is probably at least partly because I am obsessed with musical theatre.)
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If we move forward to 2013 there was a  film released called “Oz the Great and Powerful.” It is a prequel to The Wizard of Oz, and as the title suggests one of its main Characters is “Oz” or Oscar Diggs as he is also known. I watched the film when Oscar was still a foetus in early 2014, and I can clearly remember him kicking, moving and hiccupping throughout.
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We actually picked the name Oscar for baby boy before this point but, for me at least, it was watching this film and finding out that Oz was short for Oscar that made me think it was the perfect name.

And since Oscar was born in 2014, we’ve actually created more links between him and The Wizard of Oz. At Oscar’s funeral we had two pieces of music; my beloved “Over the Rainbow” and “Emerald City” a song by the Seekers from 1967, which was based on the Wizard of Oz books.
Never heard of “Emerald City?” I hadn’t either, until Oscar. Just read a few of the lyrics though:
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“Children gather fragile flowers, Stars will sing a lullaby, You’re an angel fly forever, Living life beyond the sky.”

They are the reason I am glad I said yes to that previously unknown to me song when Oscar’s Daddy suggested it. They are the lyrcis that just seemed perfect for Oscar.

As for “Over the Rainbow”:

Somewhere over the rainbow
Way up high
There’s a land that I heard of once in a lullaby

Somewhere over the rainbow
Skies are blue
And the dreams that you dare to dream really do come true

Someday I’ll wish upon a star
And wake up where the clouds are far behind me
Where troubles melt like lemon drops
Away above the chimney tops
That’s where you’ll find me

Somewhere over the rainbow
Blue birds fly
Birds fly over the rainbow
Why then oh why can’t I?

If happy little blue birds fly beyond the rainbow
Why oh why can’t I?

It seems a little strange for me that a song that I have loved for so many years turned out to be the perfect song for Oscar.

While Emerald City was perfect for Oscar’s funeral, Over the Rainbow is now forever Oscar’s song. Whatever feelings and memories I had about the song from when I was a child have now been completely overtaken by it being Oscar’s song. By it being about Oscar. And that means, that since Oscar’s funeral I have never listened to that song from start to finish without tears.
It also means that for four years I have actively avoided both the song and also one of my favourite films. Do you know how many times that film is shown on television? Do you know how many times that song is played? All the time! You can’t really avoid it. In fact, today, on April 1st The Wizard of Oz is being shown on TV. Ironic, yes?
So, doing those brave things? Right now, I’m watching the film that I have avoided for four years. #4oscar
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“It’s not a place you can get to by a boat or a train. It’s far, far away. Behind the moon, beyond the rain.”

4 Oscar

Four years ago today at 5:25am a 7lb5oz* screaming baby boy named Oscar was born.
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*7lb5oz is his correct birth weight, I’ve just been incorrectly saying 7lb9oz for years oops!

The screaming part is particularly important since he had been diagnosed in-utero with a congenital heart defect that we were told meant he wouldn’t be able to breathe outside the womb. Oscar was the master of doing the opposite to what was expected though and as long time readers will surely know; Oscar’s way is always best.
In the moments just after Oscar’s birth I got to do the one thing I had hoped, and that was to hold my baby. When he didn’t decline in health as the doctors had predicted, I don’t mind admitting that while holding him I was thinking; “ok, now what?” and that in the hours after his birth I thought things like; “I hope his health starts declining soon” and “don’t get attached to him, because he is going to die.” Believe me, I wasn’t at all ungrateful for the extended time we were having with Oscar, it’s just in my head things weren’t supposed to happen like that, and I hadn’t really considered what would happen if we had a little more time with him. In my head I thought I was prepared for him dying, and that not happening was scary, confusing and very unexpected.

April first was the day Oscar was born, and I believed that would also be the day he died. As it turned out, the second part did not happen on that day. April the first, instead turned into a day of making memories. Of Oscar having cuddles with his Mummy, Daddy, Nanny, Grandad and his Aunties and Uncle (and probably a couple of nurses as well.) It was a day of Oscar having so many photos taken and of everyone, most of all me, trying to commit every little thing about him to memory. It was the day I never imagined I would get, and the day I didn’t truly understand how much I would appriciate until much later. April 1st was our miracle day. It was, and will always be Oscar’s day.
April 1st was the day we found out his eyes were brown (yep, no newborn blue here!), that he hated hats and most importantly that Oscar didn’t ever do what was expected of him.
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On each year since Oscar’s birth I have written him a letter. It’s a tradition that I will continue here;

Dear Oscar,
Four Years, huh?
It seems like only yesterday, yet at the same time a lifetime ago, since that very first time I held you. If I close my eyes and imagine I can still remember being in the room where you were born. I can picture the tray of hot chocolate on the table to my right, I can see the photographer moving around the room capturing images of you. I could tell you the colour of my hospital gown and the layout of the room, which is strange since in that moment the only thing I seemed really aware of was the feeling of you laying on my right shoulder snuggled skin to skin. I hope I never forget the moment that I first held you.  It was a moment I wasn’t sure I would get, and the one I wanted so badly. It is a moment that won’t ever be able to be repeated or replaced and one that I wouldn’t change for anything.
I wish more than anything that we had been given more time together, but at the same time I feel so selfish wishing for that when we were given so much more than we were ever told we would get.
I wish I could remember telling you out loud that I loved you; I hope you knew even if I didn’t say it. Because I did baby boy, I loved you more than anything. I still do and always will. For such a tiny little thing you sure did make a huge impact on my life.

Oscar, my beautiful brave boy, there is nothing that makes me prouder than being able to say that I am your Mum. I promise that I will never forget you or stop talking about you given any opportunity. And if the opportunities stop coming, then I will just create them myself.

I still find myself wondering who you would have become, of what you would be like now, but that’s just what parents do. Don’t ever doubt that doesn’t make me proud of exactly who you were during the short time I got to keep you for.

I wish I could buy you presents on your birthday, but since that isn’t a possibility I’m going to try something else to celebrate 4 years. Just 4 you.

I love you forever, baby.

Your Mummy.

I don’t know if I really believe that Oscar is somewhere and can read what I write to him, actually I possibly lean towards not believing, so maybe I just write down the things I wish I could say to him.

Oscar was a fighter. People say that about people who are ill; that they fought, but in so many cases it is true. That Oscar’s and indeed other peoples bodies cope with so much more than we imagine they can. And, for Oscar, when we were told that there was no hope, that there is “a close to 0% chance of survival” somehow he continued to go on. I think this makes Oscar incredibly brave.

Do you ever wish you could be braver? Do you ever put things off because you are scared? Because you are scared you may fail? Because you are worried about what others may think of you? I do it all the time. I’m scared so much of the time. I am not a brave person.
The other night I was watching TV and then was scared to go to my kitchen in case the actor playing the  fictional corpse from the programme filmed two years ago was waiting for me….I am clearly not brave. In fact, I actively avoid things that scare me much of the time. Oscar didn’t have that choice. Whether he knew fear or not, he survived things that would scare most adults. So, in honour of Oscar’s fourth birthday, I am going to be brave. I am going to do things that scare me; 4 Oscar.

I am challenging myself to do 23 things, one for every day that Oscar was brave and indeed each day of his life, that I would otherwise be scared to do, put off or haven’t done since Oscar was born. And I’m going to post about them here. I’m going to share them, like i’ve shared Oscar’s life, in the hope that it may make people think of him just a little more this April.

Want to join me? Use the hashtag #4oscar
It doesn’t take much to be brave and be a “little more Oscar.” Just do one thing that scares you, one thing you have been putting off. Life is cruel. Oscar had so little time, yet he changed my life forever. He was brave, he defied the odds and he did the impossible.
I’m hoping to channel just a little of that Oscar spirit this month.

And, since you made it through a wall of text (or maybe you didn’t and just scrolled really quickly) here are some photos of my baby boy, all taken on April 1st 2014:
Oscar (10 of 227)
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Oscar (50 of 227)
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Oscar (148 of 227)
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Note; some of these are edits that have never previously been posted. Eventually, I will run out of new angles on old photos, but not today!

And lastly, I wonder again (as does Oscar I think) how I got his birth weight wrong all these years:
Oscar (58 of 227)

On the eve of a birthday that is and isn’t

I wanted to write something tonight; maybe an introduction or lead in post to Oscar’s birthday post tomorrow, but I just can’t come up with anything that sounds right. Instead I’ll add that to tomorrows post and give you this tonight instead:

I wish so much that tomorrow there would be a party; that there would be candles, cake, balloons and presents. That a birthday combined with Easter would be an occasion filled with so much chocolate. So, so much chocolate! It hurts so much that it will never happen. That Oscar’s birthday occurs every year and he will never get to celebrate it. That it’s his birthday and yet it isn’t. That he should be four, and yet he isn’t. That the day happens and he isn’t here.
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Just imagine if I was wrapping presents at the last minute. Just imagine that I’d be wondering if the cake I’d made was actually edible (who am I kidding; I’d have bought one from the supermarket since any cakes I make end up disasters!) Just imagine if Oscar was able to go to bed three years old and wake up four.  Oh, I wish so much that any of that could be true. That I could actually do those things and not just have to imagine they were true. If wishing and imagining could actually make things happen, well I know what I would wish for. I know how I would be spending tomorrow.
Instead, on the eve of the birthday that is and isn’t; there is nothing. No cake, no presents and tomorrow there will be no celebrating. There will be remembering, of course, but that isn’t the same. It never will be. It shouldn’t have to be. Babies shouldn’t die. Oscar should have had a lifetime full of birthdays, and yet from the moment of his diagnosis I knew he would never have a single one.  I don’t think there will ever be a point where I will be ok with just remembering rather than being able to celebrate, even though that was all I ever knew would happen. There will never be a point where I don’t wish there could be a party. There will never be a point when I don’t wish Oscar couldn’t have lived longer.

So, tomorrow will be about remembering, but, tonight I’m just going to wish things could be different. Tonight I’m just going to miss Oscar that little bit more.

I am always grateful for those extra days we got with Oscar. I will forever treasure that we got days instead of that “best case scenario” of minutes that we were told we would get. But, tonight, I’m wishing that I could have had forever. Tonight, I’ll admit that I wanted forever. I wanted so many more moments, and memories. I wanted more cuddles. I wanted cakes and presents and celebrations. I wanted to be a parent to the Oscar that lived, not the parent of the dead baby. I will wish for that forever. I will always want what I cannot have. Four years of tme passing hasn’t changed that, I doubt it ever will. It never should. I will never be okay with Oscar having died, and tonight I just wanted to acknowledge that before I move on to celebrating that Oscar did live.
Tonight I just want to admit that I am still grieving for my baby. That a part of me always will be. And that tonight, I wish that I could have just one more cuddle. oscaredit6os

 

The Arrival of April

In one week it will be April 1st; most people associate this with April fool’s Day, but for me it will now forever be Oscar’s Birthday, before any day of pranks. It should be his Fourth birthday. I say should, because he isn’t here to celebrate; just like he didn’t get to celebrate his first, second or third. You see, as I’m sure most people who read this will know; Oscar died at just 23 days old in 2014 from a congenital heart defect.

Oscar was my son. My first, and my only child.

Way back on Friday 13th September 2013 (yes really, Friday 13th!) at a little over 12 weeks pregnant we found out there was a problem with the pregnancy. In the weeks following that we had tests and scans that eventually confirmed that problem as a congenital heart defect. As the pregnancy progressed the prognosis moved from “a lifetime of surgeries” to a “close to 0% chance of survival.” We were asked numerous times throughout the pregnancy to terminate and while I would love to be able to say that the reason we didn’t was because we believed he had a chance, the more honest answer is that I just didn’t have it in me to agree to kill our baby. And as the pregnancy progressed I had this one goal; I wanted to meet him. I wanted to be able to say that I had at least held him, even if he had already passed away by that point. By the end of the pregnancy I had started saying to myself that I would fight for as long as Oscar did. I had no idea of that 23 day journey that Oscar had planned though.

Each year, starting in 2015, I posted for 24 continuous days on my blog looking back at that day in 2014. Each day was filled with memories of Oscar. I’m wondering this year, what becomes the point when I stop doing that? When does it stop being remembering and move into something of an obsession that I can’t let go of? The best answer I came up with; not this year. Not 2018.

I still feel like for most of the year Oscar is something of a secret. New people I meet don’t know I’ve had a child and in most cases it isn’t relevant to mention him.  When April arrives I want to do everything, at least online, that I can to acknowledge his existence. I want April to mean that those 23 days he lived counted for something. That in April, Oscar existed.

Parents get to brag about their children all the time and I don’t begrudge them doing so in the slightest; it’s an amazing thing to be a parent and a parent has every right to be proud of their child. As a relative, a friend, a work colleague or a stranger I love hearing what other parents are proud their children are doing. I wish I could brag along with them, but I just don’t have those new experiences to do so. I don’t have new memories; just the same precious few, which I can repeat and repeat.
I can’t put into words how proud I am to have been and forever to be Oscar’s mum, but for 24 continuous days in April I would like to try. I’d like to share just a few small parts of my amazing boy with you and maybe, just maybe, help his memory shine a little brighter for a short time.

A part of me dreads the approach of April each year, because with it comes so many reminders that Oscar is not here; his birthday on the first, the anniversary of his death on the 24th and so many reminders in between that for a few short weeks in April I got to be the parent of a living child. April is a month where I could easily see myself sinking into a depression, of getting stuck in the grieving process again. To stop myself from doing that, I write. I give myself a target of a post for each day of his life because it gives me a purpose and something to work towards. I  write and put a (mostly) positive spin on each memory of Oscar that I have so that other people will think of him and remember him alongside me. To remember him as the baby who lived, as the baby who existed and for people to remember that I had a son.

So, hurry up April, I have stories of Oscar to write.

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