So, I think I have a cyst, so I decided to take the month off any meds at all. And surprisingly I’m alright with it. I thought I’d be more annoyed, actually I thought I’d be ****ed off, but I’m not. I know this means I’m not getting pregnant this month, but I can’t help thinking it wouldn’t be my month anyway. I’ve just accepted the endless bad luck, I can’t escape it.
Right now I’m focusing on my writing over at odesk. And I’m planning on starting some niche websites to try and bring in some money from ad revenue, I did have a website before I lost Gideon, but all those weeks in hospital and it just faded away. Apparently though I made a mistake with not only the topic of my website, but how I went about it. In order to bring in ad revenue, I need to create lots of sites, on lots of different niches. But the niche is the important point here, instead of trying to start a webpage that deals with a very popular topic, I need to focus on the niche market – smaller more specialist topics. Because if I go for the big market, I have to fight for any ranking with the big guys already dominating the market. if I choose a niche market then there is a lot less people to fight against.
The theory is you try to start up 10 websites over the next few months of interesting niches and then work on advertising them. At least 1 website should take off.
So that is my plan for my little infertile life. I know nothing ever goes right for me, so it probably wont work, but I am going to try.
Talking of books, pretty much every night since Gideon died, we have read to him. I will lie in bed just before we go to sleep and I will read a chapter of a book, or a short story, just as if he’d been alive with us. We call it “Giddy Story” and it’s a tradition I hope to carry on when I have more children, we can all have a story together, a story shared with their big brother in heaven.
Over the year that he’s been gone we have read our way through a stack of different children’s books. From “That’s Not My Puppy” to “The Magic Faraway Tree.” Currently we are reading our way through the entire Chronicles of Narnia, I take the liberty of thinking that although Gideon would only be a year old now, as an angel, he can understand books of a higher reading age.
When we first started it was a way to feel close to Gideon. While he was in SCBU, sleeping in his incubator, I read to him, I read the Stick Man by Julia Donaldson, and I made up a story for him called “Hoooonnnk” which amused all the nurses, and it was during this honk story that he opened his eyes to watch me as I spoke. I love that memory, he just opened his eyes and watched me, so still, so perfect, so full of understanding, it was like he knew me, and he loved my story.
After he died and we held him, we read The Gruffalo also by Julia Donaldson. This book holds a special place in our hearts, because when he was alive we promised to read it to him, but we couldn’t buy it in the shops and we didn’t have time to order it online. So we read it after he died, and then we read it every single night for about 4 weeks, until we knew it off by heart. I felt so very close to him as I read, almost like he was with me. It provided great comfort during those hardest first few weeks. From there we added another book to our evening routine, and eventually we left the Gruffalo for special occasions, or days when we desperately need that comfort.
It has a strange effect on me, reading the Gruffalo, just that first line of the book and I instantly feel that inner quiver of love for my son, the memories rush to me, good and sad, I am filled with his closeness and it is almost like I am with him again. Sometimes I even feel the warmth and heaviness on my chest, and in my arms as if he has come to visit his mummy and daddy, and listen to his story. So we save it for days when we really, really need that closeness, that memory.
Reading to Gideon is a tradition that keeps him alive in our lives, that helps us remember that although we have no baby in our arms, we are indeed parents.
“A mouse took a stroll through a deep dark wood, a fox saw the mouse and the mouse looked good…”
Currently I’m following the story of twins born early, around the gestation Gideon was born. I check their blog every day, I keeping them in my thoughts and hope for a great outcome, but at the same time it makes me so sad to see the pictures of these babies, these gorgeous but tiny babies remind me of my little man. And it breaks my heart a little everytime I go there and read about them.
I’m saying this, because I want people to know how hard it is to do even the most human of things – follow a story, that in many ways is like my own. My experiences have crushed my spirit, and watching others go through them makes me feel a virtual cornucopia of emotions, from hope for them through to fear that they too will lose their babies.
In the same way, I am recently finding it hard to be on fertility friend. I have a lot of friends there, and I love all the support I receive there. This month, through all the false positives, I literally had so many people coming out to support me and help me and tell me how much they hope this is my month, and how much I deserve it. So, I do love the support I get there. But some days, when I feel the grinding of the grief in my heart and the pull of desire to be pregnant so much, I find it hard to be happy for others who ARE pregnant, who have had less of a difficult journey than me. I’d never wish my journey on anyone, but there is a sense where I know they don’t understand what I’m feeling. And it isn’t that I’m not happy for them, but their lives are so different from mine, it’s like we are a different species.
I remember the pain of infertility before I got pregnant with Gideon. I remember it and it HURT to think I’d never have a baby of my own. But this infertility is different, this is infertility with that memory, that memory of being pregnant, of holding my baby, of imagining the future, the dreams, the hope. This is infertility and wondering if I will ever have that again.
Someone on fertility friend, an infertile woman, who’d never seen a positive pregnancy test, tried to tell me that I didn’t know HER pain, that at least I’d had Gideon and done all the “mummy things” with him. And I knew right there and then she’d never get it. I could write until I wore my fingers to the bone, and she’d never get it. I know that there are harder stories than mine out there and I can never know the pain of someone else’s journey, but the pain of an infertile woman who’s lost a baby (to neonatal loss, or stillbirth or miscarriage) is quite a unique pain, a quiet torment that never leaves you alone.
Recently I picked up a book, The Snow Child by Eowyn Ivey in Waterstones. I never buy things at Waterstones but I had to buy this. The blurb at the back told me about an infertile couple who had lost a child and moved away from it all to escape their childless life. Basically the story is based on a Russian Fairytale, where a childless couple build a snow girl and she comes to life. A trite as that sounds, the book is something special.
I read the entire book in 1 night, as I tend to do when I pick up any book, and the reason I am mentioning this book here is because Eowyn Ivey, eerily portrays the desperation, the pure desire and the compelling need of the couple to have a child, and to keep their snow child, in a very accurate way.
While non baby loss, non infertile people may read the Snow Child and not understand the couples unrelenting NEED to have a child of their own, and how utterly consuming it is, I actually find Ivey’s account of this feeling to be very close to home. And there were a lot of tears as I progressed through the book and it is perhaps as close as you can get to experiencing that ever obsessive torment of loss and infertility without going through it yourself. It isn’t often I read a book that accurately portrays my own thoughts and feelings – well not a fiction book, there are several accounts of stillbirth and infant loss out there, but more often than not the woman are able to go on and quickly get pregnant again, negating the pain us infertiles feel.
How Ivey knew what to say and what to write, I’ll never know, perhaps she is just THAT good a writer, or maybe she has personal experience with it. but I was pleasantly suprrised with this book, I had almost expected it to be written by someone who had no idea. I even envisaged myself reading it and saying “a baby loss mother would NEVER say or do that” but I didn’t.
So, I’m happy to review a book that actually understand at least some of the emotions a woman goes through when she loses a child and can’t have another.
So after a lot of heartache this cycle, I can finally say I’m NOT pregnant.
But the last few days I’ve been getting lines. I tested out the HCG I injected and it went negative then I got a positive and on Gideon’s angel day I thought I was pregnant. I wasn’t, it turns out that for the last three days I’ve been getting false positives.
How do I know this? Well, I got John to try one out and unless he has a little secret, I think these tests are giving false positives.
wondfo false positives
those lines are faint but to any long-term infertile, they are LINES, and very promising. But of course it was all a cruel joke, on the worst day possible. Apparently there was a bad batch of these tests going around, and I checked the batch number of course I happened to get the bad batch. I was devastated, but I’m just ready to move forward from this cruel cycle.
I have a very real feeling that something isn’t right here. 12 cycles, 4 on clomid and 1 with femara and a trigger and not a single positive at all. Am I not ovulating properly? Are my tubes blocked? Does John have low sperm? All these questions which right now I cannot answer. But without a single sign of any implantation the entire year there is this re-occurring thought that I need to start getting some money together, because this isn’t happening by just popping some pills. Almost everyone I know that lost a baby around when I lost Gideon is pregnant again, almost everyone that lost a baby up to august/September and later are pregnant again. A hell of a lot of people from my July due date forums, with their happy, healthy July babies in their arms, are pregnant again. I’ve seen people with babies less than 6 months old – pregnant again. And I’m not. I’m not and it doesn’t look like I’m going to be anytime soon. And I’m sitting here everyday watching people get pregnant during the time I started ttc, have babies and then move onto their SECOND child while I still sit here – barren as ever.
I’m sad. And I’m fed up of the jokes like this month. This month was hard enough with the anniversaries, and I find it unbelievable that fate or God or whatever, decided that I needed MORE heartache this month. I don’t understand at all. What did I do to deserve this? Why do I need MORE pain in my already devastating existence? I always wanted to believe there was a reason for everything, but what reason is there for this torment? To destroy me?
But here I am, moving onto the next cycle. And this time I expect fate to try and rip my heart out and stamp on it until it’s nothing but a big mushy red mess. So NO testing and no taking my temperature, I’ll just see where this month takes me.
So here it is, the last piece of the puzzle, the last day of a long year without you. The story of the day you grew your wings.
That day we woke up late. It wasn’t like us, but we’d left you stable, very ill but stable, and we’d overslept. It might have been the first night we slept properly in many days, I think you gave us that one last night.
I started expressing some milk for you and then daddy called the SCBU. That was when the last day truly began. They told us you were having seizures again, and this time they couldn’t stop them. I stopped expressing and we got dressed and ran down to SCBU, we ran down the stairs, we ran out the door, we ran through the children’s ward, we ran to the lift, we ran from the lift down the hall. They let us in immediately and we ran to wash our hands, we ran to your incubator, approaching as we did seeing the flurry of activity around you.
Then we saw you. Oh it broke my heart into pieces. You lay there, so sweet and beautiful, having the worse seizures over and over again. The seizures were like the startle reflex in healthy babies, except just repeated, violently, over and over again in a cycle. I looked at you, and deep down inside I had a feeling, a knowledge – you were ready to go. But I wasn’t ready to accept this yet. I whispered a promise to help you.
I grabbed a doctor and told them I wanted them to tap your brain to relieve some of the pressure, they refused. They said they wouldn’t put you through that if it wasn’t going to help, and they felt it wouldn’t help. It wasn’t enough, through choked tears I pleaded, but they said your brain looked the same, there would be no tap. They told us they had seen preemies with your sats, the slow dropping and it always meant the end, and since you were on maximum ventilation there was nothing more to be done. Your ventilation was much higher than they would normally allow at your weight, but they said that was all they could do. Your kidneys weren’t working properly, and you were so swollen that your hat dug into your beautiful face, and your eyes were swollen shut.
Daddy and I sat down next to your incubator and sat in silence for a while. I noticed there were strange sores on your fingers, I asked a nurse and she hesitatingly told us that your blood wasn’t flowing properly any more, your skin was dying. You were dying.
They gave you yet another anti-seizure med and at last your seizures began to calm down. This gave us the time to think. They began to talk to us about a DNR (do not resuscitate order) and starting palliative care, but we refused. We wanted to carry on.
Alone at last, Daddy asked me if I thought you were going to survive. I barely shook my head and tears rolled down my cheeks and he said “then we know what we have to do” we both knew what we had to do.
It wasn’t that you might be brain damaged, we had made peace with that, but right at that moment I realised something, all this time it had all been about you, not us. Now the only reason to continue invasive treatment was for US – because we couldn’t bear the thought of losing you, it wasn’t about you any more, you no longer had the chance of a good life, a life at all. And I could ask you to suffer for you own good, I couldn’t ask you to suffer for us. That wasn’t fair.
We called for a priest to come and I fought with the decision about whether to call my family. It was so final, calling everyone in to be round you, it was admitting you was going to die, and that felt so sure, so certain. But in the end we called everyone, telling them that you weren’t going to make it, they should come at once.
Your oxgen sats began wavering again and beginning to drop, I felt a sense of panic and asked for the priest to hurry. As the family began to arrive, I knew the truth, I was gathering everyone for the last moments. Everyone came with tears, Nanna, Aunty Shona and Tammy and at last the priest. The priest stood by your bedside and said words I don’t even remember about joining Jesus in heaven.
Then, John turned to the nurse and told her “we want to remove life support” she looked surprised as we’d remained adamant that we wouldn’t do this. She looked over at me at this. I think I screamed, or made some awful animalistic howling noise. A noise perhaps unique to mother’s who are being told their children are dead or about to die. I wanted to back out at that moment, turn around and say “NO NO, not yet,” but then I saw you, lying there achingly beautiful even in his cruel plight. And I knew I could not back down from my responsibility as your mummy. You needed me to be strong.
They dressed you in a far too big outfit and then I reached in and touched you one last time. You were cold. It was time. One nurse gently refused to remove the tube, she too was crying, and another nurse reached in and tenderly pulled the tube out. It was like a sigh of relief went through your body.
We knew we didn’t have much time. They bundled you up and placed you in my arms.
At last I was holding you my sweet Gideon, no vent, no CPAP, just your beautiful face, relaxed at last. You were so handsome, I walked gently down the corridor, looking at you all the way, talking to you and weeping. I walked to the parents room – a room I hoped never to see and we sat down. It was here we would say our final goodbyes.
I asked our family to give Daddy and I some time with you alone and for a few minutes just I held you. I held you and I watched you and I cried. Then I handed you to Daddy and you made a noise to let me know that you were comfortable with me, Daddy smiled and held you. We took lots of pictures and I whispered to you, I told you how much I loved you and how grateful I was for the days you have given us. And in my heart I wished you would carry on breathing and fighting to prove everyone wrong.
But you never took one breath, there was no fight left, you were ready, only a gentle peace as you said goodbye.. In the end I don’t know when it happened exactly. There was no defining moment when I knew you were gone. This surprised me, I thought I’d know. But I think you died in my arms, some 20 minutes after your vent was removed, you hung on, you tried to hang on, but we told you to go, it was OK to go, we would see you again soon. I told you you’d fought a good fight, and now you got to be an angel.
You hadn’t lost your battle, you just won a different prize.
At some point around 1:45pm on 16th April 2011, you, my sweet little Gideon was born into heaven. And I gave you a piece of my heart to carry with you, until I can hold you again.
Mummy and Daddy
xxx
Here are Gideon’s Angel Day Balloons. The first one is my favourite. I literally love this balloon. We inflated it last week and I spent the whole week smiling and hugging it because it looks like Giddy bear!!
A teddy bear inside a balloon. And the bear holds a striking resemblance to Giddy bear!
Then this is the butterfly balloon, so pretty
Butterfly balloon
We also had several small balloons to represent all the little angels in heaven. We took them right down to the sea to release them
At the ocean it was kind of windy but we got lots of pictures
All The Angel Balloons
As we released them the big bear balloon took off, the butterfly balloon floated softly and gently and hung around in the sky for ages and ages
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We also made Gideon a lovely cake. It took me a while, but it actually looks how I imagined it would look.
Giddy Butterfly Cake
Candle lit and we sang happy angel day to him
Inside is pure, RAW rainbows. Unfortunately the cake hadn’t fully cooked inside. But it was still really nice
Rainbow Cake
But all in all the perfect day for my perfect little boy.
And here I am, I have survived the year. But I am sad, and I am missing my son. But I am here.
This is the Last Balloon of Life Day, tomorrow is the Angel Balloon Day.
Today’s balloon of Life was a little bit different in that I released it for Gideon, and for another angel who went to heaven a couple of days ago. The mother’s first child was stillborn a couple of years ago and then her second little boy died at 6 days old. She too had to remove life support. I am heartbroken for her. And I knew Gideon wouldn’t mind sharing his balloon with another little angel. So for that little angel and my own little angel, the balloon of Life Day 17.
This is where we released today’s balloon. These are the walls of Conwy Castle. We climbed the stairs to the top of the walls, and looking out over the whole of Conwy beneath us we released the balloon.
Conwy Castle Walls
This is where we ended up
On the walls
The view shows the main castle in the distance one one side
View from the walls
And on the other side hills, could there be a better spot to release today’s extra special balloon? Somewhere in this picture is the balloon in the sky, but not sure where
Hills
And here I am with the balloon, looking a bit windswept. It was very windy up there
Balloon of Life Day 17
So, tomorrow is the big day. The cake is baked and iced, the decorations are drying, I’m trying to keep it together. But it’s hard, I remember that day with much sadness and some regret. My life changed so much in just a few minutes, as I watched my son die I knew nothing would ever be OK again. My life would always be about that, missing my son, my angel.
And after tomorrow, then what? I have so little to look forward to, I try to stay positive and hope and I dream of the day I finally get pregnant, but I know that might never ever happen, and if it does I have a long journey ahead of me until I get my rainbow. I want so much to hope, but I am so afraid to hope.
But either way, even if I do wake up tomorrow to a positive pregnancy test, this day is all about Gideon, not about that. This is Gideon’s day. The day he was born into heaven, the day my heart broke, the day I cried until I couldn’t breathe again.
It’s all about you little man.
Oops forgot to add today’s photo. This photo breaks my heart, he look so ill, and so heavily sedated. I think he was already in another place at this point, I swear I could feel him around us for the few days before we said goodbye, I could feel him near me, I could sense him, as if he was getting ready to say goodbye.
I had a bit of fun with Gideon’s balloon today, I wrote this
that says:
A Giddy Balloon
1 Balloon
Colour: Green
Recipient: Giddy Angel
Reason: Angel Day
Any other Comments: Have you seen my feet?
And my rabbit met Gideon’s balloon, this rabbit is perhaps the oldest rabbit in the world. His name is Conan and he’s about 6-8 years old. He can be a little bad tempered at times, but he’s free-range. He lives semi-wild in our back garden. He attacks the cats, and our dog, so nothing dares attack him. Gideon would have loved him.
Conan meet Balloon of Life Day 16
We released the balloon at sunset, and this time time it went straight up, no wind, just ascending into heaven.
Balloon of Life Day 16 at Sunset
Beautiful.
So, Gideon’s picture of today. This is him lying on his front. It’s the only picture of it’s kind I think, because he hated lying on his front, in fact I watched them put him on his front once and he literally lifted himself up and tried to roll over. Yes, the tiny premature baby lifted himself up to roll over. But this time he was heavily sedated so couldn’t fight back, and it was better for his oxygen to be lying on his front. He also liked to tuck his hands under the mattress because it felt nice. You can see he isn’t looking so well on this photo. But still so damn cute.
And what about this next photo? What is going on here you might ask? That is Gideon with his foot on Giddy bear. Very cute, but not so cute reason for it though. His blood wasn’t flowing well at this point so the bear helped to elevate his leg, so the meds in his cannula could get into his blood stream to keep him sedated. But still very cute to see him with his leg on Giddy bear.
Giddy Bear, have you seen my feet?
I forget just how small my sweet boy was. How much I crave just one more touch, even one more second with him.
Today we attached a poppy to Gideon’s balloon, as a symbol of remembrance of his own personal battle to live and to represent that his battle will never ever be forgotten. It was the last day we would be at his grave before his angel day, so we did it today and we just happened to have a poppy in the car from some remembrance day many years ago.
Gideon's Poppy
Happy Angel Day Little Man
Everything is planned for the big day. Sort of. Well I know what cake we are making him and how we are decorating it. Lots of deep breaths. Since my cycle could well be due to end on that day too, I could be due a lot of tears.
Talking of tears, I was getting a photo for todays “Gideon on this day” and I haven’t really got anything, only a couple of John and I with red eyes and blurred pictures, so I had to go back on my blog to that day to see what happened and why I have no real photos. Apparently it was this day they discovered he was having pretty serious seizures again, and his sats were dropping and staying low, they couldn’t bring them up again. They had to change his tube just to bring him back. This was where we began to understand that he wasn’t coming home.
So since I have no pictures of my sweet baby boy, I have two photos – one of me and one of John on that day.
Sadly, from here, the pictures of my boy make me cry, because I can see his deterioration as he slowly says goodbye and grows the wings he always deserved.
We visited his grave today and released his day 14 balloon there. It flew off and got stuck in a tree, then amazingly unstuck itself, got stuck in another tree, unstuck itself and got stuck in yet another tree before getting free and flying off unharmed, likely being pulled by my angel.
We tied the balloon to the grave first for the picture
As you can see the grave looks spectacular with such lovely flowers all in bloom. As we walked down the row his grave, I could see all the flowers in the distance and was amazed. And we laughed and we smiled as we watched the balloon become unstuck, we laughed…we laughed, there were no tears today. I love that.
I have so many photos of Gideon from this time last year, on this day, I don’t know which ones to choose. So I chose a couple
John was working all day and I can’t drive, so the balloon was released in the garden.
Balloon of Life Day 13
That’s my kitchen in the background, try to pretend it looks tidy. I get to go see Gideon’s grave tomorrow, it’s been 2 weeks, which isn’t that long, but I miss visiting weekly. It’s just too far to come.
I can’t believe Monday is the angel day. 1 year since we said goodbye, since I held him as he grew his wings. 1 year. Nothing has changed here at all. I never expected to be here, 1 year later and no closer to a rainbow, and no Gideon in my arms, but here I am. And I suspect here I’ll have to stay…for a while to come.
Forgot to add a picture of Gideon on this day. This day last year was the day my Gideon pulled his vent out. It was also the day things began to go downhill fast, he’d just has his heart medicine for the duct, and that night he pulled his vent and got really agitated and angry. Later we discovered he’d had a second serious brain bleed. It was this that eventually took him from us. I regret not asking to kangaroo care him this day, because he was so angry and wouldn’t calm down or accept his CPAP, he just kept hitting it off, if I’d help him I KNOW it would have helped.
I also can’t help wondering…what if he’d never been given those meds and had never had the second bleed would he still be with us now?
Before removing ventAfter removing vent. The day of the second hemmorhage
Tiny Glimmers 