A year ago today was the worst day of our life. I can’t believe it’s actually been a whole year! Sometimes it feels like it was just last week and other times it feels like a whole life time ago.
Those long months waiting for the surgery dragged and felt like torture, watching our baby go through the surgery and recovery was actual torture!
The early days when we found out that our daughter had this dreadful condition didn’t feel real, like one of those things that you think can’t be happening, something that you hear about but think it would never happen to you. It was like a terrible nightmare, constantly wishing someone would walk into the room and push you over so you’d fall and suddenly jump out of sleep. But I never woke up, it was all so very real.
I don’t think I’ll ever be able to properly articulate the feelings surrounding what we went through. It’s not something that you go through and then it’s over. It haunts you, in quiet hours flash backs of pain and memories that will scar me forever pop up in my mind when I close my eyes, reliving the suffering over and over again.
Having to sign a piece of paper with your authorisation for your child to undergo such a huge operation with the risk of death jumping out the page and hitting you in the face is like a punch to the heart.
Holding her as they inject her with anaesthetic and feeling her go heavy in your arms, placing her down on the table and watching her beautiful, peaceful face disappear under an oxygen mask and having to give her one final kiss was the worst experience of my life. In that moment I felt a sudden and heavy feeling of loss, I had to turn around and walk away from her, leaving her with strangers and praying they will take care of her. In that moment it felt like I had lost her. I know that I didn’t, obviously, she’s here now nursing to sleep, I know there are many parents who have actually lost their babies and my heart goes out to them as I only had a glimpse of what that feels like! I once heard it said that someone that loses a marriage mate is called a widow, someone who loses a parent is called an orphan, but there is no word for someone who loses a child, there is no word that can fit something so incredibly painful.
The 9 long hours before we got to see her little face again were awful.
That first look after surgery was almost surreal, I wanted to see her, of course, but at the same time I was so scared about what she would look like, and how different her head would be and if I was ready for that. She looked so peaceful, surrounded by her favourite toys. She looked just beautiful. The mixture of relief that she was out of surgery but the hurt of seeing her wound was a hard moment to bare, along with having to leave her side that night.
Watching her suffer and experience so much pain makes you feel utterly powerless. The fact that up until that point every time she cried or needed comfort you could give it to her and responded to every single wimper until now. Now she’s hurting more than ever before, but now you can’t comfort her, you can’t ease the pain, infact if you try and hold her you make it worse. Being afraid to hold your baby for fear is completely heart breaking. So we sang and we held her hand, we sang not only to comfort her but to comfort us, songs that had encouraged us in the months leading up to this point and she was familiar with them, they calmed her and they calmed us as she drifted in and out of sleep. And she knew we were there doing our best and when we held her hand she held it back, tight.
We have a strong faith and it grew even stronger through our experience, and it was only through the power of prayer and God giving us the strength through his spirit to make it through that we were able to endure it. He promises to help us through anything and that we will never be tempted beyond what we can bare and when it feels like it’s going beyond he gives us power beyond what is normal. To endure something like that is beyond what is normal and were thankful we have our faith and also our hope to help us through, along with invaluable support from our family!
And here we are now, snuggled up in bed together as safe and content as can be. Little Zo-Bo is poorly and we haven’t been able to do as much as we’d planned to do today, but we are happy and thankful we have her and she had such fun opening her presents and exploring her new toys.
She has amazed and touched the hearts of many! She brings so much energy and light to our life and teaches us true happiness everyday. Full of smiles and fun, our life has only really just begun, yet we’ve been through so much which has shaped who we are as individuals, parents, a couple and a family and our future. We have learnt to never take anything for granted and given hardship true perspective! We soak up every day, new experience and new developments with our daughter because we are so thankful she is ours. We can’t even explain how proud we are to be her parents! She’s ours and only ours, to keep, FOREVER!
While we still face struggles and she has issues that we are still facing day to day, worries about what the future holds for her regards her surgery for her eyes, how she will develop and if the craniosynostosis has affected her into the future we just don’t know. But what we do know is that nothing can be as bad as what she went through with her skull surgery and if we can get through that, we can get through anything. Yes it still hurts, sometimes more now than when we were going through it because I’m not running on adrenalin anymore. But we are on the other side with our beautiful girl and nothing is going to change that!
Happy 1st Cranioversary Zoey-Jane!
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Cranio Shaped Mama 