I have a daughter.
It’s taken me a very long time to find the time, and the words for this post.
She’s two weeks old. Two weeks and three days. And the beginning of her life so far has been one of the hardest and most beautiful times of my life.
There’s a lot I want to say. But I will struggle to get things down in this post. Because there’s the part of me that just wants to celebrate my beautiful daughter. To not have to explain her tubes. And hope people can see past them. I love her so much. I can’t explain how much. Then there’s the part of me that wants to be honest about how I’m feeling and how life as a mother of a Special Care Baby Unit baby has been. The part of me who is grieving not having her home yet. Grieving the past couple of weeks and what we’ve endured. And grieving a change of perspective and a change of what I expected to just be rightfully mine. Then there’s the part of me that feels immense guilt. Guilt for passing on a syndrome to her. And knowing that she’s in hospital right now, in the next town, because of me. And then there’s the part of me that doesn’t really know what to say.
I won’t do her birth story until she is home. It doesn’t feel right without her here. But I will do it soon. I’ve made notes so I don’t forget. Her birth was actually amazing. And I doubt I will ever forget it. But those tiny details can always fade. So I’ve got them safe for now.
I always knew there was a chance that my children would have my syndrome. I’ve tried to write about it before. But it’s been a weird knowledge to have. Because here I am, living my life, and not knowing any different. I don’t remember the days in hospital. At least not the newborn ones. Which is a small relief, now I am playing the role of mother in this life of deja vu.
There was a 50% chance. And we had the extra scans. And we were so confident she would be okay. The first thing I ever said when Bill was born was a desperate ask of: “Is he okay? Does he have a cleft palate?” But with her, my face broke into a mixture of tears and joy and I whispered: “She’s here. I did it.” It never occurred to me this time to worry.
But Daisy is just like me.
Daisy has a cleft palate. A complete cleft of both the soft and hard palate. She has my syndrome. Our syndrome. God there’s two of us. I never expected to say ‘our’. Marshall Stickler Syndrome. Including the Pierre Robin Sequence. A small lower jaw, which causes the tongue to fall back over her airway. A small nose. But also big, beautiful eyes.
In time, her jaw will move forwards, just as mine did. The specialist cleft team could hardly believe I was ever in her position. “You can’t tell at all.” But for now, we’re being trained on how to fit her airway. It’s called a nasopharyngeal airway. And we have to insert it through he nose and down her throat. And it’s scary. It’s horrible actually. But it’s reality and we’ve had to just…do it.
It’s been so hard because my whole family are having a huge, heavy sense of deja vu. They look at her and they see me. But she isn’t me. She still has a lot to go through. And I’m scared she might not be as lucky as me. Some children can have hearing, sight or learning difficulties. And our daughter has shown herself to be as bright as the shiniest button, but you still worry. What if?
The hardest part hasn’t actually been the diagnosis. And the fact that our daughter is a bit different. I don’t care. I’d love her no matter what. And I’m fiercely protective, proud and so very in love.
But leaving her behind. That hurts most of all.
The day I discharged myself from hospital was the hardest. I was there for five days and I couldn’t do it anymore. I couldn’t cope with the same bed. The same curtain. The same meals. The suffocating feeling that left me clawing at the walls and desperate for air in my lungs. Air that smelt of outside. Or something new.
I felt like I should have tried harder. Stayed longer. But I was struggling. I would cry into a hospital bed sheet and pray no one would hear. I would listen to other parents join the ward, with their new babies. Waking with a start to cries in the middle of the night and realising that it couldn’t be my Daisy because she was in the incubator next door. Listening to mothers talk of tiredness to visitors, and trying to remember that struggles are relative and that it probably would have been me, had things been different. And setting alarms to pump in the night. Shivering because the ward was cold. And crying because I was worried my supply wouldn’t be enough for my daughter who needed it.
In the end, we left. Mark drove us home. And it was sunny. The car seats behind us were both empty. And I cried.
That feels like a long time ago now. Now we seem to be managing better. There’s a sense of routine. Crafted and built around me by my family, who make it possible. My mother mainly. Who is watching her baby endure what she endured for me.
Mark has been incredible. I spent so many days apologising to him. I was so worried he would blame me. Or regret ever taking a chance on someone like me. But I’ve realised that my guilt stops me from seeing how amazing he is. And how lucky I am. And we’ve struggled, sure. But I honestly think our daughter was meant to be. And that she was born to us, because we can be strong for her and we can survive this. I know that sounds cheesy and perhaps a little over-hopeful. But she’s felt fated from the moment we knew she existed.
Bill has been so brave. He’s struggling. And I can tell. But he doesn’t show it. He has this ability to put a brave face on and find perspective, when he’s not yet four. He’s comforted me. And told me it will be okay. “It will be okay Mama. You just have to be patient.” And do you know what? I’ve not been the mother he deserves at all. I’ve been teary, tense, preoccupied, and tied to a pump sometimes. Pumping milk for his sister, like I did for him. And he’s accepted me.
My family and friends. The strangers who I don’t know, but have reached out to me. If you are reading this. Then I can never repay you. I will never reply to those messages and comments. There are hundreds. And I will never manage it. But there have been times where I have barely been able to read them through the tears, and you have brought me so much comfort.
And Daisy. Daisy is wonderful. Daisy is the little girl who has the most beautiful eyes I have ever seen. Daisy looks more like her dad every day. Daisy is trying to smile. And no one who knows her suspects it’s wind. And I have a team of nurses on my side for that one. Daisy has had bloods taken every day. And now she takes it in her stride. She has removed her tubes and caused panic. She is alert, awake, curious. She is sometimes lonely and bored. And I know she wants to come home. She picks out my face. And she looks at me like she knows me. She rolls her eyes. Frowns. Bats your hands away if you tickle her. Like her dad often does.
She is my daughter. The baby I waited nine months for. The little girl I dreamed about. The little girl I couldn’t imagine my heart growing for. The one person in this world that ties me, Mark and Bill together.
We just want to get her home. That’s all we can think about.
And we will.