Katy: Happy 1st Birthday

A message to our boys on their first birthday...

Dear Matthew and Oliver,

Today you would have turned 1. If you were here, I'm sure that we would have had a really fun day with all your family. I would have made you each a cake (as soon as we found out that there were 2 of you we had decided that you shouldn't have to share a birthday cake!) We would have also had a little party and you would have had loads of pressies. I often wonder what you would be like now, what we would have brought you for your birthday, what you would be doing and little things like what colour your eyes would be.

But you aren't here, because you will always be 6 days old. However, that doesn't mean that we can't still have a special day for you. Me, Daddy and your Sisters are going to go in to town and see your special butterfly on the wall at the museum. After that we are going to plant a lovely tree we have brought for the garden. It is a Japanese Maple and the leaves go bright red every autumn. This means that it will look fabulous on your birthday every year. It also has a colourful sign so that everyone can see that it is in memory of two special boys.

We have also got a little present for your sisters. It is a book all about you so that they can grow up knowing all about their big brothers. They are a bit too small to understand it at the moment but I'm sure that they will love it when they are a bit bigger.

Me and your Dad still miss you both terribly and Emily and Sophie, your little sisters, would have loved to have met you. But we will try and make your birthday as happy as we can, a wonderful celebration of the two of you!

You can read more about Katy and her journey in her own blog 1 in 10 Thousand

Cassandra: A Letter to Lukas

Dear Lukas,

Five months ago you were born on the early hour of a Saturday morning. I will never forget that day because I have permanently imprinted it in my heart, mind and soul. The next morning you earned your angel wings, and I will never forget that day as well. I have never felt so much sadness filled with so much love at the same time. When I held you in my arms as you took your last breath it felt like the world had collapsed around me but yet it was such a peaceful and gentle moment. I like to think that the tears I cried at that moment blessed you with my eternal love for you. I wish that my love for you could have healed you and saved you.

Five months on and here we are. I still think about you everyday, I still miss you everyday, and I wonder about you all the time. Five months on and my love for you grows by the second. I never knew this kind of love existed. The kind of airy love that floats around spiritually. Its a love that is alive, a love that is yours.

Love Mummy

xxx

Cassandra writes about her journey of grief, love, hope and trying to find peace after the unexpected loss of Lukas, who died at 26 hours old, on her blog Lukas in the Stars.

Julz: First Heavenly Christmas

Dear Melody,

As mummy and daddy sit watching your big brother and sister be amazed by their delivery of new pjs from the elf, I wonder which pjs the elves would have brought you. Would they have been pink? Or the standard Christmas ones, ready to dress you in a snowman themed sleep-suit.

Imagining you trying to tear down all the baubles at the bottom of the tree, as the top of the tree became heavy with the decorations we would have moved out of your reach.

I wonder would you have been crawling yet, poking at the few presents under the tree, your big brother and sister getting irate because you can’t quite understand the word “NO!”

We would be trying to figure out how to keep you asleep so Father Christmas could deliver all 3 sets of parcels without you seeing him.

Then there is the day it self…. tomorrow, Christmas Day; trying to point you in the direction of your presents, so your brother and sister can open theirs without little fingers piercing holes in their presents. But being 10 months old on boxing day you wouldn’t understand the difference between the toy and the paper, the paper would be far more interesting.

Lunchtime you would be discovering your first taste of sprouts, do you eat it or play with this little green ball, sat staring at you next to the carrots which, I think, you would have loved.

You would have had a naughty mouthful of cream, but I can imagine you could have stamped your feet at not having more!! You feisty little thing!

You would have spent the rest of the day surrounded in cardboard boxes with the occasional “nos”, or “Mummy, Melody’s playing with my toys!!”

But instead you are resting your head in the clouds, making sure you’re watching your brother and sister having an amazing day. Making sure me and daddy have a glint of a smile on our faces, as I know you don’t like us sad.

I know you have company where ever you may be, but it truly isn’t the same, sending a balloon and lantern lighting a candle, is not the same.

I wish is a phrase I think I will use forever, a wish I know that will never come true.

I hope your beautiful eyes are healed and I’m sure they light up the skies.

We love you Melody Caitlyn. Merry first Christmas Sweetheart.

Lots of love and floaty kisses,

Mummy and Daddy

Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

(one for every day you were here)

Fliss: Letter to my Ayla

19^th September 2012 

My darling, beautiful Ayla,

A year ago today I was hoping that you would be facing a heart operation when you were only one month old.  What sort of a wish is that? One where you would still be here, you would have had a chance, a good chance, at life.  A year ago today I had no idea, absolutely not a clue, of the horror, the heartbreak and life and soul changing devastation we were about to go through.  From the moment that test showed two lines I felt so different than I did with your big brother.  There wasn’t the excitement I had with him.  Happiness – yes, I was very happy but I couldn’t shake this feeling that something wasn’t right.  I didn’t dread miscarrying, I expected it and was almost surprised that every week you were still there.  I didn’t want to miscarry sweetheart but maybe I knew that I would lose you in some way?

We had an early scan and again I expected to be told that the pregnancy wasn’t viable, there was no heartbeat, something.  The 12 week scan I expected bad news again but there you were waving at us.  But not moving, not like your brother did.  Your Daddy questioned it but the lady said it was fine, our first sign? She couldn’t do the nuchal measurement because you wouldn’t change position, the first sign you would be doing things your way.  I didn’t mind because I knew termination would not have been an option for us.  Even those scans didn’t relieve that worry deep in my heart.  Please sweetheart, don’t think I didn’t want you, I did, I do, so so much.  I knew you would be a girl but I also knew that you were poorly, on some level at least.  I never, not once expected you to be as poorly as you were but I knew something wasn’t right.

We sat outside the room where we were to have your 20 week scan.  The scan that people normally get all excited about, seeing their baby looking more like a baby, finding out girl or boy.  I didn’t I felt sick with fear, I sat there rocking back and forth, looking back now I knew so much more than I realised at the time.  That scan was the start, the real start of your story.  Your miraculous battle to make it into the world.

A year ago tomorrow we heard the words ‘Your daughter has Edwards Syndrome’.  We had no idea what that meant, how big it was. I hoped it would mean you would be disabled, need special care, have special needs, I never imagined, never, that it actually meant we didn’t get to keep you.  Babies don’t just die because their genes aren’t right, there must be something that can be done, surely? How little I knew then, how little I understood.  How much I know now.  Its hard to remember ever being that ignorant, that naïve.  Before we had that phone call, whilst waiting for the results I remember standing at the fridge thinking about the possible dilemma we could be facing, let nature take its course – give you a chance, or end your story prematurely.  Live with that the rest of our lives.  I stood there thinking this all through, round and round and you, you flipped inside me and gave me the biggest series of kicks and movements as if you were saying, no, shouting at me ‘GIVE ME A CHANCE, I’M HERE, I’M FIGHTING, GIVE ME A CHANCE!!’ and that’s when I knew without a doubt that there was no way, no matter what the diagnosis, there was no other option for us but to carry on, give you a chance, let nature do what it needed to.

It led to the hardest, loneliest time of my life.  I didn’t want to be pregnant anymore; I just wanted it all to go away.  Go to sleep and wake up when it was all over.  But I loved you, oh I loved you so much by then, I was, am, your mummy and I would do anything for you.  I do not regret giving you that chance, not at all and I never ever will.  My love for you is overwhelming, all consuming and everlasting, just like my love for your brother, because I am your mummy.  I can no longer do anything for you so for those 5 months I am glad I did everything I could for you.  I do things to keep your memory alive, show my love for you to the world but it’s not the same, you are free now, you don’t need me.

The guilt I felt and still do in some ways at not being able to protect you, make you better engulfed me for months.  Why couldn’t I make you better? That’s what mummies do, give magic kisses and cuddles, go to the doctor, whatever it takes to make their children better.  But I couldn’t, no matter how much I wanted, wished, begged, I couldn’t.  There was nothing I could do but give you a chance and hope, every decision I made I did what I felt was best for you and I hope you know that my darling and could feel my love for you every second of every day you were here and every second since you went, since we had to say goodbye and give you no more cuddles and kisses.  When I broke inside, never to be completely fixed again, to always have a hole in my heart, a piece of me missing.  Every happy occasion, smile, laugh tainted with the pain and sadness of you not being here, someone missing from our family forever.

So what do we do now? We miss you every day, we light candles, we send you balloons, we talk about you, to you, we see rainbows, sunflowers, butterflies, stars, blow bubbles and think of you.  We use you to drive us in our new perspective on life, we hold you in our hearts as we try to move forward, sometimes stumbling, sometimes slipping back and sometimes falling flat on our faces, but we get back up and carry you with us in everything we do.  Because we love you, forever and always,

Watch over us baby girl and know you’re always with us, 

All my love, 

Mummy xXx

Nicole: Letter to my boy a year after his due date

My beautiful boy.  A year ago today was your due date.  Your dad and I were so happy - with both of us off work and me still feeling mobile enough for us to get out and do things.  We stopped in town for a coffee, and the woman who served us was pregnant too.  She was so excited when I told her it was my due date, making jokes about preparing towels and hot water.  You moved about so much that day - you were so wriggly and made your dad and I laugh with the weird shapes you made in my tummy.  I knew you weren't on your way just yet, I'd had no contractions, though you were headed in the right direction. 

When we first lost you, I couldn't think back to that time without bitterness, without thinking how stupid I was to have thought we were going to keep you. I found it impossible to remember those days and feel happy.  I'm so sorry for that.  Now, I think back to this time last year and yes, I am sad.  The day is tinged with grief, because I'm looking at it through death-tinted glasses.  But I also remember, quite clearly, how it was to feel you move.  How excited we both were, how complete and happy I felt, how I was brimming over with love for you all of the time.  I don't feel any of those emotions anymore, except the latter.  I feel love for you, all of the time.  I ache for you, I miss you, and I love you. 

I really wish you'd arrived that day, or sometime in the following week, because chances are we'd still have you now if you had.  But that isn't what happened, and to wish it makes me feel like I'm denying who you were, and what you mean to me.  I have those perfect, wonderful memories from before 15th August, and I'm so grateful for the time you gave us.  I've never experienced grief like it, but then I've never experienced love like it either.  Thank you sweetheart, for everything.  With love, always, mum xxx

Julz: Letter to Melody

Melody was born at 26 weeks due to her mum Julz's severe pre-eclampsia. Julz would like to raise awareness that Pre-Eclampsia can happen before 28 weeks.

Dear Melody,

Today is the 1st August, which means it has been a whole 4 months 1 hour and 5 minutes since you fell asleep. How different things were this time last year. Me and Daddy had just decided we wanted to try to see if we could make you possible. It was a few weeks before our blessing, and a few weeks after our wedding. We thought how lovely it would be to have a post blessing baby; we never in our wildest dreams thought you would grace us with your presence, so early in every way! 25th August was the magic moment you came to our lives. I became sicker as the months went by, though I found it hard to bond with you, which I will forever hate myself for, I knew as soon as you would be born I would love you forever. And that moment came sooner than expected. I'd said over and over again I couldn't feel you move, hence the limited bonding, I was so scared for you. Until 26th February 2012 the doctors and nurses thought it would be safer if you you were delivered.

At 26+6 1346 you squeaked into the world, kicking the doctors as she pulled you out from the warmth that you were used to. They showed mummy and daddy your face and the love surged through us both. Neither of us were allowed to go with you, for me I had to be stitched, but they wanted daddy to stay with me. I felt I'd already let you down by now being able to go with you.

It wasn't for another 6 or so hours that I was able to see you, daddy had gone to see you and taken a picture. The love I felt a washed over me.

When I was finally wheeled to see you I felt absolutely scared, scared on how you would look, how you would feel and whether we would be able to keep you.

Though your tiny little face was covered with a ventilator, you really looked so, so beautiful. In fact one of my favourite photos of you is one of your earlier ones.

Within 24 hours you were off your vent onto cpap, then quickly moved to vaportherm, which you remained on. Receiving O2 through it, nothing fazing you, you were always so feisty. You knew when you needed your bottom changed, you hated everyone poking and prodding you, putting your hand up across you face, to tell us you had enough. You used to love Kangaroo care, even showed you wanted a breast, but you were still too young to be trying. Mummy and daddy cuddles were the best.

You also enjoyed having your big sister and brother to visit you. Listening out for their voices, giving them huge windy smiles, and grabbing your sister's finger. They love you very much.

You were doing so so well, we were told your brain function was fine, no signs of disability, you had a slight murmur but that also cleared, you really were our miniature hero, waiting for you to grow, waiting for the discharge day that we had been given, to take you home a week before your would have been due date, 15th May, we began making plans as a family of 5 for the half term holiday, so excited to get you home.

31st March me, daddy and your big brother came to visit you as your sister was going to a birthday party. The nurses let us have a cuddle with you, it was the first time your brother had seen you outside your incubator. You had such a beautiful colour about you. Your brother was talking to to you, could see your eyes looking out for his voice, though we knew you couldn't see him, we knew you were trying. We had a photo of the four of us, and told the nurses it would be just mummy and your sister visiting the next day, us three girls together. The nurses agreed to wait to do your cares so your sister would watch too. 1st April, daddy phoned in as he did every day, to see if you had a better night, we were told they were about to ventilate you, to give you a rest. I knew then we had to be with you, a sinking feeling within my heart. We dropped your brother and sister off to their own dad, in the hope we would collect them later and me and your sister would go down again later.

In the 10 minutes it took us to get ready and to take them to their dads, we had a phone call to say we were needed to be with you. I drove at speed to the hospital, hoping that they were going to transfer you to another hospital an hour away and that we were needed to sign forms for permission and collect your belongings.The unit doors were closed, I felt sick, your doctor greeted us to tell us that she was afraid you weren't going to survive!! Pardon? I can't repeat what I said.

I felt my legs buckling, but knew they had to carry me to you. Your bed had been moved back to the most intensive part of the unit. This in itself was bad as you had been in the bottom end of HDU. I begged them to tell us this was a horrible April fools joke, why were you fighting for your life? They had restarted your heart 5 times, we asked them to stop, to leave you alone. We wanted none of this but to have your vent taken away was the most terrifying awful thing we have ever gone through. They passed you to me but I only held you for a moment daddy took over while you were christened in no less them a minute long.

Your vent was removed. This was then I knew I had to have you, to hold and kiss you, keep you warm, beg you to stay. Wondering if you could hear mummy and daddy's pleas, our sobs saying the word we had been so scared to use for the past 5 weeks. I really hope and wish you had heard us tell you we love you.

930am you left us.

I held you for as long as I could, but then your colour began to fade rather quickly, we made the heartbreaking decision to hand you back to the nurses to bath you and get you dressed, now this guilt will stay with me forever, we should have bathed you, we should have stayed with you, I'll always wonder if you would have stayed if we had left the vent in. Should we have fought more for you?

NUMB

What now? How do we possibly leave you? Leave you to be transferred somewhere cold. The days and weeks passed too quickly, the feeling of everyone forgetting you, people telling us to get over you? How are we ever going to do that?

As we approach your 6th month birthday, we wonder, would you have been crawling? What food would you have been pinching off our plates? Having to move things higher, or the sleepless nights through teething.

We miss you so so much. Life is so cruel. You were doing so well, we had so much hope that you would be home. To discover you had an infection similar to meningitis? Wondering if it should have been caught. Fed up with people telling me it's one of those things, or natures way. I just wish desperately that you are still here.

We love you so much, we will never ever forget you. You'll always be our daughter, baby number 3.

I just wish desperately that I could turn back time. To hear the words, "we made a mistake, Melody is in fact ok but she needed a rest" Why?

My heart aches, my arms feel heavy without you. Desperately clinging on to your scent.

Melody Caitlyn we will always always love you

Forever your Mummy

xxxxx

Gemma: Writing to you...

I still like to write to you Isaac as I have done since we set you up an email account when I found out that I was pregnant; I emailed stories of my excitement and of feeling ill; I remember emailing you after you started to make me ill after I had eaten cheese and cordially informed you that cheese was off limits to the sickness and would be eaten regardless; I no longer email you with a view to one day opening the account with you and reading through all the trials and tribulations which we may have forgotten years later; I have forgotten the address now and wouldn't like to bother Daddy with it right now.


So now I write to and save the letters on my computer and sometimes I write and write and delete them once they are written in a moment of despair; I like to imagine you sitting on your great grandparents knees as they read my letters to you; I have written many letters to you over the year that I have been without you; some pleading for a greater understanding of why you left me and a sign that you are still there somewhere and not lost to me forever, others angry that you didn't fight harder to stay with me and some simply telling you that you are still loved and still very much treasured; I don't know if you can hear me little one but I love you and I miss you every day.


Today is your first birthday Isaac; you should have been one whole year old; full of sleepless nights and mischief and giggles that made us laugh along with you, the day would have started early for you and I no doubt and we would have had to coax Daddy out of his slumber with big kisses and noise; we would have gathered together in our bed that would have been covered with presents from mommy and daddy; I of course would have stuck some horse themed gifts in and daddy would have bought far far too much; gifts that weren't exactly age appropriate but that he would have had as much fun playing with as you would when you were finally old enough to use them. We would have helped you to open your presents and I can imagine you sitting having more fun with the wrapping paper than with any of the gifts that you had received. I can hear your squeals of laughter as daddy grabs you and throws you up in the air and I tut and tell him to please be careful, while unable to hide a smile to watch the two of you play.


You would have had your first birthday party today and the house would have been decorated and filled with streamers and balloons; if I stop and close my eyes I can see just how it would have been, and the atmosphere would have been that of outright joy as I, along with my family delighted in watching you grow. You would have had silly football themed gifts from Pop and your uncles, and designer outfits of your Auntie Laura.


This time a year ago you were born sleeping and the final hope that I had slipped through my fingers; the labour was quick but not at all what I had hoped. I promised you Isaac, that I would be brave and try to stay positive but the last few weeks have been hard and I have relived the loss of you over and over again and Daddy and I have talked and cried and opened up to each other in ways we have been reluctant to do until now. I finally understand that he feels guilty to and I have tried to put his mind at rest about his fears, I don't want him to feel he was to blame, who can be blamed? Me? God? Mother Nature? You? There is no one to blame, you were a star than shone so brightly you didn’t need to burn for long.


Today I am sad; I feel the absence of you so strongly that it makes me want to fall down weeping; however I also still feel you with me and I feel I can celebrate all that you were to me; because above all else I am happy that you were part of us. If the option was to have never had you at all then I will take all this sadness gladly; for it shows that you were loved.


You were made out of such love; your Daddy and I - we had our bumpy rides over the years the loss of you the worst one of all but it is a love that has never given up; a love that knew how to fight to keep it strong and when the worse happened we were able to weather that storm together; to have been made out of such a love I can see meant that you will have only known that - for you there will never have been any worries or doubt or fear; you will have grown knowing that you are loved and perhaps that is all that you ever needed.


I want you to know little man that you are always with me; not a day goes by that I don’t think of you and know I needed you to have been even for a short time. I know that my longing for you is caught up in the need to have a healthy living child here with me, and my guilt at wanting another child makes me anxious that you do not feel you are to be replaced; you will never be replaced.


Today Daddy and I woke to the delivery of a balloon and flowers for your garden; you are still much loved and not just by me. We will go and select a new outfit for Isaac bear and loose a balloon where we walked together as a family and I will light a candle to show you the way home should you wish to look in on us.
Happy birthday Isaac and Thank You for having been part of our lives xx