two steps forward…one terrifying stumble back

pops with santaBefore I could let out the joyous cheers of thanks and love… I was topped off with a dose of fear and sadness. I am trying to separate and organize my feelings, thoughts, and words.

Poppy’s Tree Fundraiser was phenomenal. Absolutely heartwarming. So many people – friends, family, and strangers alike, stepped up and helped this event make history in my heart. We sold 224 trees, tons of baked goods ( thank you Edie, Valen, Patty & family, Sharon, Bryna, Matt and Kelly for donating) and a bunch of handmade (by me) gifts. This fundraiser put a noticeable dent in the upcoming surgery bill. We have raised 10% of the total cost.

I would like to say a special thank you to the following for their generosity, be it in time, product, or other support : Kim and Michelle, Kaye and Ed, Lori, Traci, Doug and Dona, Santa Claus, Starbucks, Ronita, Jazzkats, Billy, Brittany, Keith, Brandon, Kathie, Joi, Missy, Whitney, Leah, The Milwaukie High School Choir, KGW News, Alma Midwifery, The Klum family, and every single one of you that came out to purchase your tree! This was a success because of your kindness. My faith in people was truly restored throughout this event. Thank you.

And now, I am quiet and hunched over. If I stand too tall, my insides will spill out and I will have to (once again) gather the lot of them and stuff them, tied and tangled, back inside my shrinking body.

On Tuesday afternoon Poppy had a seizure. It was frightening to the very core. I called her neurosurgeon and after a lengthy conversation between neurology, neurosurgery, and myself, an emergency medication was ordered to begin immediately. I wanted to believe it was something else. I wanted to pretend it didn’t happen. Like a tree falling in the forest with no one around…

But there we were. Four generations witnessing a most terrifying fact.

Poppy was seen yesterday by neurosurgery and they just confirmed my fears – while trying to be reassuring, they insisted this was not something to shrug off.

“We have to protect her brain. The side effects of anti-seizure medication are outweighed by the risk of untreated seizure activity.”meds

That feeling when you almost get in a terrible accident but miss it by a hair – that is my baseline. Heart- pounding, sweaty, tunnel-visioned and unsteady. My abode. My daily uniform.

It gets harder. Every second that I know her, see her, smell her, feed her from my breast, sleep tangled in her grasp – I love her deeper and stronger and more purely. Not only do I now harbor realistic fear when I send her brother off to school where someone may bring a weapon, or hatred, or poison – but this tiny girl is not even safe in her own body. In my arms.

” The decision to have children is to decide to forever have your heart go walking outside your body.”

Yes.

Having children is having a constant ache elsewhere. A limb in a classroom 12 miles away. The lens of each eye napping quietly beside me. Lungs, separate. So many ventricles. Liters, and liters of blood. We need every drop. We cannot spare one another.

I need these two, every living cell – to function. My heart is broken tonight. Broken for families with empty bedrooms, and  empty arms. And my heart is broken for my son, and my daughter – their lives become harder every day. I am not saying that our love and laughter and joy do not overpower the rough stuff – but the rough stuff exists within every belly laugh and snort.

We know pain. We maneuver through it with the grace of God. But we know it too well.

baby baby

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6 thoughts on “two steps forward…one terrifying stumble back

  1. Oh Noelle, how terribly difficult…I cannot imagine the pressure & anguish this caused your mommy heart, watching your sweet baby suffer through that. 😦 I wish I could hug you all right in this moment & could pass on some strength. I will continue to pray for sweet little miss, big-brave brother, & you my dear friend. We love you all! ❤

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  2. Hi there mama, I totally understand the helpless anguish of watching your sweet babe have a seizure; Mariya had a complex seizure that rocked her body for more than two hours this last fourth of July. However, I do hope that your neurologists were able to abate your fears some by letting you know that one seizure doesn’t mean another will happen. It’s good to have the medication on hand, but I will pray and believe that Poppy will be free of them from here on out. Sending all my love your way.

    Warmly, Leah Marie

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  3. Missy Lowe was one of my most favorite baristas. She is on my friend’s list on facebook so I have seen your story and have been praying. I have two special needs boys. My oldest began life with life threatening seizures. This is truly one of the most frightening events. I am used to doctor appointments three or four days a week, surgeries, and making horrible decisions that no parent should be asked to make for their child, just to keep them alive, but we do so because we believe God’s grace is bountiful. Where we are weak, He is strong ~ and gives us fortitude to continue to lovingly seek answers for these precious lives He has put in our care. I offer you encouragement in words, though they seem so trite. You are not alone. You are loved. Your children are so very blessed to have you, a mother who so obviously loves them from the depths of her soul. May the Lord’s hand rest heavily upon your family, blessing you, healing you, and comforting you. He will not forsake you even in the darkest hour. Merry Christmas!

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  4. I have to comment how sweet this picture is. Playing with her baby doll. You will find as she grows the likes she will have the familiar part of being a mom to her for the little things you call normal in her life, it will out weigh these moments of shear fear. I remember holding my nephew Brandon as a baby in the hospital and watching him and saying look he’s smiling at me and my sister says very calmly, no he’s having a seizure. Thank God we were in the hospital so I handed him right to a nurse, but the pain in the pitt of my stomach will never be matched elsewhere. Fever causes seizures for him, still, but with knowledge and medication on hand, for those rare times, you work through them. I will pray for her to not have them.

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