It’s Friday afternoon, Daisy is sleeping, and I have spent a good ten minutes staring into space. I know that a more sensible person would be productive, or even make herself a brew and buy baby clothes online, but my heart just isn’t in it.
I have been counting down to being 20 weeks pregnant for many reasons. The half-way mark – though both of my babies have been varying degrees of overdue. The anatomy scan – seeing this baby boy (I still marvel at the thought of having a second son). The hope that I would feel better by then – which I do (praise be to the Pregnancy Gods).
But mainly, I have been counting down to finding out the health of our son.
Finding out whether my genetics, and my syndrome had gained control, in the second that he began to exist. With Daisy’s conception, I imagined Mark’s sperm entering my egg and being held at gun-point. “We run the roost around here, kid.” And so Stickler syndrome took hold. And that was that.
This time, I like to hope that Mr Sperm burst in with back-up and grenades, and pushed Stickler Syndrome out into my womb to die.
It sounds comical, written down like that, but it doesn’t seem all that funny at all.
It’s hard for me to openly talk about how I feel. Because, ultimately, Stickler Syndrome affected me in the early months, or I suppose I could stretch that to ‘years’, of my life. Not much more. And I had no care for my medical history, or what I supposedly had, until I became a mother to my second child. And suddenly I was hit by the enormity of what I had. The enormity of what my parents must have gone through with me. And the absolute shame in a) feeling careless and not ever expecting it to happen to me, and b) for what I had done to my daughter.
I now have an 18 month little girl, who, in all honesty, is just the best little girl in the world. At least to me. She has been through more in her short life than most. She is fascinating to raise, a wonder to love. She is tough. She falls often, on unsteady toddler feet, and tumbles that would have left her brother in tears at the same age, are met instead with a slight wince, and then a quiet stumble to right herself and dash off to continue whatever adventure she was on at the time.
She is eating, when once she would not, and could not. She drinks and can suckle, when once a tube did that job for her. She breathes and fills her lungs with air, as naturally as you or I, when once upon a time, she could have obstructed, ran low on oxygen, or even died without her NPA, and regular suction and care.
She can talk. She asks to brush her teeth. She puts things in the bin. Responds to instructions. Answers back. Offers opinion. Says: “I love you.” She may need speech therapy as many do, after their cleft repair, but then, she’ll no doubt breeze through that as well.
I have loved her fiercely from the moment I knew she existed. More when she first stirred within me. More when I held her for the first time. And more than I ever thought I could when I was told she was just like her mother. Her fate was sealed. The closest genetic relation I will ever have, is her.
I feel a duty to make her happy. I changed everything to be here. And I wonder if I will ever feel like I have made it up to her?
I adore her so much.
But I didn’t want that for her. I don’t want her to have to go through this as a mother herself one day. And I don’t want it for my son either.
Right now, as I type, he squirms, gently, on occasion. My sleepiest babe in the womb. The one least likely to make a fuss. He is the only one who knows the score. As he sleeps.
And sometimes I want it to stay that way. Just never know. Ignorant bliss. Just have this last pregnancy and enjoy it. Just countdown the weeks. And buy baby things. Get excited.
But instead I bite the cuticles of my nails until they are sore. I stare into space. And I run through eventualities in my head.
Until now, I had just looked at the numbers. 50% chance of a boy. 50% chance of a girl. 50% chance of Stickler Syndrome. 50% chance of not. I already have a non-Stickler syndrome boy. And I already have a Stickler syndrome girl. The odds are even. And there is nothing I can do about his.
I also find myself hating myself somewhat. Feeling upset, angry, jealous, silly. I know that, as situations go, to have three children, who, eventually, will all be healthy and happy and well – I am lucky. I know much worse goes on. Sometimes people have told me in the past. And it’s only a twist of a blade, because I’m all too aware of it myself.
Why can I not just be brave?
Because I am selfish?
I am afraid.
I just want to give birth. Cry and look up at the sky and thank whoever is listening for a healthy baby. Feel my body shake with adrenalin as I try and stroke his vernix-covered head. Kissing him gently and trembling with the shock, relief and overwhelming joy of birthing another baby into this world. I want to feel Mark’s lips on mine. See the tears in his eyes, through blurry eyes of my own. Have a midwife tell me: “He’s okay. He’s healthy! There’s no cleft palate!” And I will sob. Every time I have imagined that moment, I have cried. And I have imagined it often in the last few weeks. I will put our son to the breast and cry with relief as he latches. And I will be able to ring up my family and tell them the news that they want and deserve to hear: “He’s okay!” He will come home. And we will be just another average family, with just another average newborn. Blending into the crowds. No messages of sadness from loving friends and family. No weeks of wondering when he will come home. No fighting and battling a diagnosis. No howling broken sobs in bed, with empty arms and an empty stomach. No strange looks in supermarkets when your finally-home baby is hidden by tubes and medical equipment fills your buggy basket. No fighting to help those tubes be removed, one-by-one. No community care. No cleft visits. No cleft repair. No PTSD.
I’d do it all again for him.
But I don’t want to.
I really don’t want to.
And so, I don’t know what that makes me?
Am I weak? Am I selfish? Am I stupid? Am I wrong?
How frightening it is to face it. And how frightening still it is to admit how I feel.