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
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
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
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
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.