Welcome to Holland

At DeeDee's first birthday party, a very good friend, whom I had met in hospital whilst her daughter battled Meduloblastoma, handed me a piece of paper and said "read it later" 

I finally got around to reading it the following day, Dee's first birthday party was pretty hectic, we had a lot to celebrate with her reaching the age of one and us not knowing how many more parties we would get to enjoy with her, and with us sharing the news of my pregnancy too. 

Anyway this is what it said:

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 

So I have spent the past four years in Holland and although I still often mourn the loss of Italy I have discovered so many amazing things about Holland. It really is beautiful here. You see DeeDee and our unexpected trip to Holland have taught me to see the beauty in every day, to never waste a minute, to take a step back from the bad and search for the good! Holland has taught me to be strong, it has shown me who I am I inside and I can only ever be grateful for that! Some days my heart longs for the simplistic beauty of Italy and I am learning that that is ok, it is ok to be sad about what I have lost, to mourn the loss of what could have been doesn't make me any less grateful for what I have! 

Eni 

xx 

It's been a while

Hi!!

It's been a while hasn't it! Things got so hectic around here that I just didn't have time to blog, but now I'm back, and I'm hopeful that I will have more time, and inclination, to keep you updated (wishful thinking!?!?)

So a little update on us, we are just starting on our journey of home education, in a "normal" world DeeDee would have been starting school in September, however our world is far from normal, when Dee was six days old she suffered her first respiratory arrest, at nine days old she was diagnosed with an inoperable brain stem tumour, the likes of which the medical professionals involved had never seen, leading them, after discussing her worldwide, to class her case as "palliative" we were told that she wouldn't make her first birthday, that she wouldn't walk, talk, would never eat orally along with a host of other issues. Dee has gone on to defy all expectations but make no mistake her life is fucking tough (I swear lots, I should have told you that before......people of a sensitive nature look away now, seriously don't read any more it will offend you!) she requires resuscitation daily, she has behavioural issues caused by the location of "The Thing In Her Head". We live each day as if it were her last as we never know when that will come, see each respiratory arrest could kill her, the pressure it puts on her little body is immense so we try to make sure each day is filled with laughter, love and memories.

This blog is a chance for me to keep a note of our journey in life, home education etc and for you to follow us.

I think I have bored you, and myself, enough for now I promise I will try harder to blog daily/weekly

Eni xx

Sometimes..........

Sometimes, just sometimes, I allow myself to think about that time..................the time before.......before I'd seen a child die, her mummy begging her to come back, she was the first, the first of many children I was to see die, her name was Kayla, she was 18 months old and I saw her die! It was the first of many mummy and daddy's heart's I was to hear break, it is audible you see, the point at which they break, and it is the most devastating sound in the world! After Kayla came Grace, Thomas, Abraham....the list goes on and on, a list of children, babies I saw taken and mummies and daddies heart's I heard break!

Sometimes I think back to a time before I knew what it was like to wake up every single day and not have that knot of terror resting on my chest, blocking my throat, making it impossible to swallow, making taking a breath a mammoth task! That terror that today could be "The Day", the day my whole life could change forever, the day that DeeDee is next, the day I could loose the most precious thing in my life, my beautiful little girl! It's getting harder and harder to remember "The Time Before" sometimes I think I can and I no longer know how it makes me feel!

It gets harder and harder to keep the door locked and double bolted on the "What If's" I have to though as once the "what if's" are out, floating around, they'll never go back in, I'll never be able to shut the door again, so it has to stay shut and I have to stay strong, the door will open one day and then it will never shut again but the time will come for that and it isn't now!

When I planned to be a mummy I never knew, I just never knew, that resuscitation would become so natural to me, as much a part of my day as nappy changes and nap time!

I suppose I should take you back again as you really need to know the past so that I can bring you up to the person I am in the present, I'm trying not to make you too dizzy with all the backwards and forwards but it seems unavoidable.

The first time my DeeDee stopped breathing at just six days old I felt like I stopped too, I could hear my heart hammering in my chest, I could feel myself being guided away but I don't remember taking a step, don't remember taking a breath! Now when it happens I don't think, don't see, just do! Because that first time wasn't the last, it happens every day you see, sixteen times was the worst day, three on a good day!

Due to the position of "The Thing in Her Head" every time she cries she goes into respiratory arrest, as much as we try to avoid this there is only so much you can do to keep a stubborn little todzilla from crying, meltdowns over juice taking too long to arrive, the biscuit barrel being empty, shoes taking too long to be put onto her little waiting feet, all of these things can and have caused respiratory arrest and then she has to be resuscitated to a degree, sometimes just supporting her, keeping her lungs open with a little bit of PEEP (pressure) is enough and she will come back on her own, other times it's ten minutes of her not breathing, of having to breathe for her via an ambubag attached to her tracheostomy, ten long minutes of our hands on her little chest feeling her little heart beating, sometimes strong, sometimes barely palpable, ten long minutes of hoping, wishing, begging this not to be The One! The One with which her heart stops, the one that, at best leaves her brain damaged, at worst takes her away, I'm not ready for her to go you see, how can I ever be ready!?

We've tried to prepare ourselves, we have "A Plan" in place, a piece of paper we pass on to ambulance men to let them know what we want them to do, "they" call it a "personal resusitation plan" and another piece of paper to say what we want to happen "afterwards", lots of pieces of paper! But how can you really prepare? How can you be prepared to loose the one person you should never have to? How can you prepare yourself to say goodbye to your baby? You can't! You shouldn't have to! But in the world I live in you do have to and it's bloody hard!!

But I close the door, keep it locked, double bolted, never even look through the peep hole and close my ears to the "what if's" concentrate on the here and now, never looking forward, never looking back, concentrating on the very second we are in......no more.....no less! Creating memories and smiles is the order of the day in the Enigma Household and that's what gets us by, memories and smiles........and lots of photos!!

But sometimes.........................

Much love
Eni
xxxxx

An introduction......

Hi, come on in, pull up a chair, make yourself comfy! I know it's a little pink round here, maybe too pink.... I'm considering getting the decorators in!

So I suppose I should introduce myself, for those that don't know me, I'm Enigma Mama, but please call me Eni. Up until three years ago my life was completely normal, much like yours I hope, just a normal gal moving house, expecting a baby, planning a wedding (maybe I wasn't so normal, I got married at 35 weeks pregnant in Gretna Green, I didn't elope in secret or anything there were lots of family and friends there, big fairytale dress, yes I looked like a hippo in a tutu but it was my wedding day and pregnant or not I was having my HUGE dress, and it was a beautiful day, anyhoo maybe more on that later) getting excited about the little things, new shoes, handbags, haircuts and most importantly the little gorgeous baby girl I was growing in my tummy, my first baby!

DeeDee was born by emergency c-section due to a plummetting/untraceable heartrate after a super fast labour after being induced at 38 weeks gestation due to reduced movements, my beautiful 6lb12oz little girl (a lot smaller than we were expecting...seriously I was like a whale, we ran a sweepstake at work and I think the smallest guess came in at 8lb 9oz) I thought I already knew what love was, I was wrong, I honestly had never felt a feeling like the one I got the first time I looked at my beautiful little girl, that was where the fairytale was supposed to start right?? Newlywed, new home, brand new beautiful baby, now time for the happily ever after????

DeeDee was 6 days old the first time she suffered a respiratory arrest (sometimes when it's quiet, which very rarely happens in my house, I can still hear myself screaming "my baby, my baby" as I was ushered out of the room by the crash team) I will never forget seeing her turn blue from her head to her tiny, perfect little toes and asking the nurse "what's wrong with her" her reply of "she's not breathing" she had every test known to man, all of them came back clear, "maybe it's just a virus" and then when she was 8 days old......................"we'll do an MRI scan just to check everything is ok in her head"

I sometimes think back to the day she was 9 days old, it was a Saturday, we were on High Dependancy by this point having been moved round from Intensive Care after she had her scan on the Friday evening, it was so bright and cheerful, our nurse for the day Helen was lovely, we had bathed Jai-Jai and were having cuddles when a Dr I'd never seen before came along and said "Could we just have a chat?" I didn't want to leave DeeDee, they said there were a few of them waiting in the little room at the bottom and she was asleep so we would be fine, so we followed her down to the little room, chatting away asking me about my job, I worked in the hospital as a Medical Secretary, I think I even laughed at something she said!

I sometimes long to be the person I was as I walked into that room, because I will never ever be that person again, "normal" "innocent" and most of all "ignorant" oh how I would give anything to have had just one more moment of ignorance..........

"we found something"

"a tumour"

"not seen anything like it before"

"chemotherapy not an option"

"too young for radiotherapy"

"surgery impossible due to location"

Words................so many words! The smiles gone, everyone staring at us waiting for a reaction, asking if we had any questions, getting up and leaving the room but my legs wouldn't work, they just wouldn't work then the tears, so many tears in the middle of the corridor, and other parents, who had done "the walk" previously looking on. Having to tell family (family that didn't deserve to know, but again more on that later)

Six months followed in hospital, mainly in Intensive Care, living in the hospital wasn't as bad I had expected it to be, at least we didn't have to worry about the electricity bill, we lost our home whilst we were in there as The Man had to give up work, we literally lived there!

She was 6 months old the day we brought her home, I say home I mean HELL aka the in-laws, the hospital would have been better, we brought her home as they could do nothing for her, the only thing I asked them was "make her better or give her back" and they couldn't do the former so they choose the latter, we were told she wouldn't make it to 1, she's still here at 2 and a half, she gets worse with every passing month but she's here! I will post more on her antics at a later date I feel I have spilled enough for now......

When DeeDee was 9 months old when, whilst making the most of an empty house, we conceived for the 2nd time, more than a little shock as it took three years to conceive Dee even more of a shock when we heard the word twins at my first scan, still after the challenge of Dee it would have taken more than a single "normal" baby to prove a challenge.

Boo & Dink put in a surprise apperance on Mothers Day 2011, another emergency c-section, Dee adored them as soon as she laid eyes on them and is an amazing big sister!

The three of them fill every single day with so much love, laughter and mischief. I'm sure from the outside looking in our life looks crazy but for us it's just our life, comments such as "Come and get your son out of the bin" "Boo stop trying to strangle your sister" "Ambulance please..." are all to common in our house.

I hope that I haven't bored you too much with my introdutory post, it could have gone on a lot longer, please do ask if there is anything you would like to know more about.

I shall look forward to filling you in a little more on the last 2 and a half years of my life as well as the future.........whatever it may bring

Eni
xxx