Last night the mother of a baby with Kawasaki Disease who I have been in contact with a lot over recent weeks sent me the link to an article by a mother who wrote in the New York Times about her experience of being faced with life-threatening illnesses in both of her children. I read it when I woke up this morning, and was struck by the eloquence with which the article was written, and how well it described a feeling that I haven’t yet been able to put into words.
You can find the article, entitled “My Daughters are fine, but I will never be the same”, posted on Freya’s Story’s Facebook Page – http://www.facebook.com/freyasstory
There was one theme within the article that struck me more than any, which is captured perfectly by the author; “I’m still parenting without the illusion of a safety net.”
And that really is it. When you have children you go about protecting them from the moment they are born. Before then even. You take the right vitamins, you stop drinking, quit the fags, eat a bit healthier than you might have done before. You make sure that you and your baby stay out of danger, and covet your bump whilst your baby grows inside. And then when they arrive, you feed them your milk because breast is best and you want to make sure, no matter how long you manage it for, that your baby gets the best possible start. You cradle their heads to make sure they don’t come to any harm, you watch over them like a lioness whilst they are sleeping, or while the other children (less gentle than yourself) are trying to coax a smile from a days-old baby with a garish plastic toy that your tiny bundle can’t even see! And that instinct to protect your brood doesn’t stop there. It’s all immunisations, bike helmets and road safety, lollies and running, fingers in doors and all the other perceived dangers we read about in social media or see on the news. And that is what parenthood is about. It is about providing a safe environment within which your child can thrive under your unfaltering protection. Until your child is struck by illness. And I don’t mean the colds and snuffles that mum’s fret over on Facebook every day either. I mean a serious, critical, life-threatening kind of illness. One like Kawasaki Disease.
Since all of this began, I have had a sick, empty, anxious feeling in my belly that I can’t describe and have not been able to explain. I didn’t know what it was until now. I feel incomplete in some way, and I feel that way because part of my natural motherly instinct has been cruelly extinguished by this experience. One of the fundamental parts I am here to play in my children’s lives is that of protector. And I now know that the ‘safety net’ that we so carefully place around our precious ones is just an illusion, and that acceptance has shaken everything that I believed about parenthood. And knowing that I cannot protect my children, particularly Freya, from everything is a cross that I will always struggle to bear.
Logic tells you that you never really were able to protect your children from everything anyway. Of course I know that. I know that the lessons I teach my children can only help to reduce the probability of something happening. You cannot make it impossible; bad things happen. I know that I could fall in front of a bus tomorrow and be killed. It is possible. Is it probable? Don’t be daft! And with the treatment that Freya received, and her continued improvement through her convalescence, I do feel it is highly improbable that she will be taken from us by this awful disease.
The conversation that I had with my ‘kawabuddy’ just before she sent me the article led me to open up about thoughts and feelings that thus far I have kept pretty well hidden in the darkest corner of my over-active mind. And though it feels like a risk to share some of that here, publicly, I do feel that maybe there are hundreds of mums just like me and her who think and feel these things, but deal with them in fear and silence, allowing them to eat away at us and make us feel like we are going slightly mad. I guess it’s kind of a taboo subject to talk about death. Especially the death of a child. And even more so, a death that hasn’t happened yet and perhaps never will. I have had visions of my daughter’s death. I have watched it played out in my mind like a tragic movie, seen myself waking to my daughter’s lifeless body in her cot, heard my screams as I am hit with the realisation that she is gone. I have seen myself walking towards a church altar where that photo stands threatening to haunt me forever. I’ve taken photographs of Freya, and heard a little voice telling me that they will give me comfort when she is gone. I am sure that makes me sound like I’m losing my mind. But I’m not. Trust me, I know how that feels! I’ve suffered from deep, dark depression in the past and this isn’t that. I am not depressed, I have been shattered by a traumatic event and am coming to terms with that day by day. The psychologist in the hospital told me this is called ‘anticipatory grief’; “grappling with and grieving a loss before it completely unfolds..” I was mentally preparing myself for the very worst that could happen, and through that preparation my mind went into over-drive and my imagination created images I try hard to forget. They still pop in from time to time, but I close my eyes tight shut and shake my head and they’re gone as fast as they came.
I used to cry when I held Freya. Tears of sadness and fear that I may lose her. I still cry when I allow myself the time to stare into those ocean-deep eyes, but I think now those tears are more from thankfulness that my precious miracle is still here.