When the sky has fallen

If I could retrace the steps that brought me to this place in life – I would do so silently. I would not make promises. I would not complain. I would not shout and holler about the wolves circling, the sky falling, the weight on each shoulder. I would save it up for today. I would harness all of the alarm for this moment, sitting in a parked car outside the children’s ER.

She is sleeping. Struggling to make each and every inhale and exhale. Waking in alarm to her inability to move air properly. Simply trying to breathe. Just trying to breathe.

It’s too late to cry “wolf” anyway. He has already taken bites. While the panic and hysteria of typically frightened individuals is resounding, the truly desperate are silently drowning. No wave left in their limbs. No sound to their crying. No air to gasp for. Just a quiet sinking.

While the well meaning and sometimes awkward offerings of my perceived strength have carried me this far… I no longer see the relevance or truth in clich├ęs. My position is not admirable. It is miserable. I have disappeared. My children are hurting. My spirit is dying. Yet the world keeps right on moving.

Yes. I know that it could be much worse. I know that there are worse situations in the world than what surrounds me now. But this aching in my heart is a universal pain. This mother’s sadness is an all or nothing experience. I cannot fix any of this. And, perhaps the hardest part, I am losing my last bit of faith – like a blanket I carelessly dragged across the expanse of my entire life – never checking in to find the frayed bits and spots where it had worn thin and fallen off. It no longer covers me.

When she wakes I will take her inside to be tested for RSV, cancel her MRI for the second time, and have the fluid on her forehead checked.

I am strong. I can do this. But I am telling you that it comes at a cost. My children and I are in a dark place. Beneath laughter, and photographs of smiling, there is a struggle to cope. I have offered up every morsel of joy in my life as a barter for the strength to survive.

I am so sad that this world exists. An impenetrable cocoon of fear and turmoil. Ignorance truly is bliss.

Postscript:

Poppy does not have RSV. She did smack her head really hard on the wall and may have fractured her forehead. I cannot feel bone. Only soft and fluid. I asked two ER doctors, and a maxillofacial surgeon. No one had a definitive answer as to wether I should be worried (as if I can help it either way). When she is well the MRI will shed more light and offer an answer. She made it through this illness with two trips to emergency but NO admissions. That is extraordinary. Though the hum of oxygen and suction and the nebulizer threaten to further darken my door – I am thrilled she is in the comfort of her own sweet home.

I think today I will begin writing my book. Something to devour the sporadic minutes of calm. A pill to glaze a sweet fog over the pounding that rattles every sealed door. An outlet for the unpredictable excess.

Sometimes, in the midst of a harder than hard night, I read old love letters. Notes. Pleas. Letters from war, from prison, from far away, from much too close, even letters that I wrote back – and coldly kept. I am thankful for the love and adoration and lust and envy and anger and time that every single one of them gave to me. It is during this time that I remember that I had mountains upon mountains of romantic love – now it is time to learn to love myself.

The births of my children have both been the grandest times of transformation in my life. The moment Kieran was born, so was I. It was as if my entire childhood had been a wonderfully terrible dream – and then there I was – a real live person with purpose. Someone responsible for something miraculous. The proceeding decade continued to solidify that I was right where I was meant to be. Even the struggles of being a single teenage mother were exciting. I excelled. I was the best at it. I was so proud, so happy, so very perfectly alive.

Conceiving another child was a long and difficult, yet absolutely extraordinary, process. Over a number of years there were lies, losses, and acts of desperation. But finally, magically, and not a moment too soon – Poppy sank her sweet little cells into the wall of my aching womb.

The night Poppy was born drew a heavy black line across the timeline of my life. Everything present within me prior to her birth was wiped out, depleted, stomped out, distinguished. Not erased or destructed – just no longer there. Not available to pull from. My reserves, my emotions, all of the madness that made me so vibrant – drained in that instant.

I need you to imagine what this might be like. What it might possibly do to a human being to experience undeniable absence of feeling at this moment.

It is an irreparable breaking of the heart. A mirror so true that you can never look yourself in the eye again and not see the darkness hiding in the corner.

But there is healing and light, hope and undying love waiting… if you make it that far.

Some do not.

I am going to tell you a story that was told to me last night by Poppy’s geneticist. I was asking if I could please put together a pamphlet, or business card, or ANYTHING to give to families in that horrid meeting where they find out their child has a life-altering syndrome/illness. Something to say : it can all be okay. You can put one foot in front of the other. There will be moments of joy. You can do this. Here is my number. Call me. I will be right there.

He said yes. And then he said “I have to tell you, there was a baby born with Apert syndrome here recently. After finding out the diagnosis, the family fought to stop all interventions and let the child die. They won – and the baby died.” He continued to tell me how sick he was inside, how he couldn’t even speak to the ethics board – how terribly upset he was over this loss. He told me that after the child had died, someone brought in a clip from channel 8 news, a little girl swinging and smiling with her mama. It was Poppy. “Is this life not worth living?” They asked.

My heart disintegrated. I remember that meeting. Thinking that my child would never walk, or talk, or laugh. Thinking she would be blind and deaf and mentally retarded.

There is a devastating problem happening in our own hospitals. We HAVE TO raise awareness. Even the medical professionals caring for our children do not know. When a new mother googles “Apert Syndrome” and frightening images of disfigured children in third world countries who have had no medical treatment pop up – they do not understand that it can be different. I know. I was there recently.

Please. Please. Help me spread awareness. Help me make Poppy and all of her sweet Internet friends be the images a new parent sees when they brave google. I don’t know how. I only know that a sweet little babe was not given the chance to live because of massive fear and grief.

There IS something you can do.

Xo

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8 thoughts on “When the sky has fallen

  1. Love this baby, this mama…. This family….. I know the darkness of which she speaks…. It’s all encompassing. Devouring even.

  2. *hug*

    I think you write beautifully. You are a great author and I applaud you for starting a book. I usually go back and reread sentences from your blog as they are deep, real and full of emotion. They way you convey a feeling through your words is amazing. :) I’m glad Poppy doesn’t have RSV and will cross my fingers for her with the MRI.

  3. She is beautiful! You are so wise to share your innermost thoughts – the fear, the hardship along side the joy and hope. It does nothing for you to keep all your feelings inside, even the darkest ones. By vocalizing your thoughts and feelings, you are not being eaten away inside; writing/talking is healthy for you and gets it out. You have difficulty ahead, but also a lifetime of love from Poppy to make it worthwhile! God must have chosen you to be Poppy’s mother because you will fight for the best for her and you will love her through all troubled times. It won’t be easy, but one step at a time and a trust in God will get both of you there! Sending hugs and prayers from a Montana grandma.

  4. P.S. I really wish I lived close to you to love on you and your children. You have a hard road ahead. There’s no denying that. Your crusade for children with Apert Syndrome is admirable. No child should be left to die simply because parents feel no hope or path to health. God bless you!

  5. “I have offered up every morsel of joy in my life as a barter for the strength to survive. ”
    Poppy’s Mama- We have different paths but I hear myself in your words. Your fear, your isolation, your misery, your disappearance. It could be worse. It could always be worse. But this is your worse and it fucking sucks and who cares what other people’s worse is. Have your worse and eat it too. My son died from complications of his birth, with “win the lottery” type odds much like Apert I imagine, and I have spent the past 5 1/2 months lost in my own worse, trying to give a shit about all the real and true horror that goes on in this world. Not just my little world of mourning mama and dead baby but it’s all that I can see. And it’s gotten me exactly nowhere. Your life is SO full of just getting by, of trying to do all of the “normal” parenting things plus caring for a child who needs so much more medically and the tumultuous ocean of exhaustion, grief, terror, sorrow, joy, frustration, gratitude, disappointment, anxiety etc etc etc that is just below the surface, when it has not engulfed you. You and I have different stories and different paths, but I hear you. From one torn apart mama to another, I see you. I hear you and I see you. I knew about you and Poppy before my son died but this is the first entry I’ve read since. I can *almost* read it like I had before he was here and gone, when I could imagine it, when I could understand the words but not their weight. Now I get it, now I know what you are saying, down to my very core, into each and every cell. We are so different but I hear you and see you because your words reveal your wound to be a lot like mine. I feel so much of what you say too. Feeling less alone in this nitty-gritty of motherhood, in the hardest, most impossible tasks any mother is asked to take on, we must tell each other. We must not always be alone. So thank you for writing.

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