I haven’t been able to share my words over the last couple of months. A recent blog of mine was published and went viral and someone commented about how I made my daughters story all about me. It hurt. I was shocked. And it put a heavy hesitation over my fingertips. 

I am telling MY story. This is my story, about my life. The story of me and my whole world. Only Poppy can tell her story, and believe me, she will! If my truth-telling and gut-splaying makes you uncomfortable – you probably need to read more of it. Tell your own story. Listen without formulating a response. 

I’m not going to stop telling you my truth. So, here I go again…

The fight to get to this place was hard, cold, and the most exhausting stretch of existence I have traversed as of yet. Years. Many years have passed and the fight has been daily. But I had an amazing community that showed up year after year to support us. I had help when I desperately needed it. And I had this little girl looking up at me with absolute joy in her eyes. 

In many ways this recent phase (surgery, recovery, and today’s cast removal) has been surprisingly smooth – our flights were great (thank you Xanax), our hotel was perfectly located, the hospital was beautiful, the surgeon was brilliant and kind and full of good, good energy), my mama and Traci were invaluable and helpful and Poppy SOARED through the pain and fear and massive uncertainties and unpredictability of it all. I mean it, she killed it. She nailed it. She has absolutely blown my mind and heart wide open. 
But it is open, my heart. Feelings flooding in and out of what feels like a billion tiny hurt-holes. Healing over and wearing thin again at a steady pace. A delicate balance for this mama. I keep thinking “I cannot survive this heartache.” And then, well, I do. 

Surgery day: we woke up before the sun. My mama, Traci and myself readied ourselves and put a sleeping Poppy in her stroller and walked over to the children’s hospital. When the time came her amazing surgeons and anesthesiologist and nurses came for us. For the first time I was allowed and invited into the operating room until she was under. 

In hindsight, I should have woken her up before they put the marshmallow flavored mask over her face. 

Poppy has never been afraid of hospitals, doctors, or medical equipment. She knew she would go in and breathe the marshmallow air and take a little nap. Had I woken her up enough for her to get her bearings before two strangers were holding a mask to her face I think I could have saved us both the terror of: waking up to strangers holding a mask over your mouth and nose/watching and having to hold the limbs of your heart as they startle awake and struggle in fear. It was a lesson hard learned. Also, they almost put me under as well (which I would not have minded) accidentally as I was tucking my face into her neck and humming while inadvertently breathing in the mallow. There was a moment of comic relief as the anesthesiologist realized what was happening. I appreciated (through my tears) the way every single person in that operating room held the space so beautifully. I felt she was safe when I walked out, empty-handed, and slightly dizzy. 

Again, she soared. No complications. About 4 hours in the OR. And it was time to see her.

 This was the hardest time of the whole trip. As she woke she was scared, in pain, and screaming “help me.” This lasted many hours. I won’t linger on this portion. It was hell. 

Fast forward to the next two days in hospital – Poppy named her casts. Marshmallow and Chocolate. She asked for nose-scratching, pillow crackers with balls on them (finally figured out she was referring to saltines!) and cranberry juice. She insisted that the nursing staff refer to her only as “Teapot” for the duration of her stay. She never complained. She laughed. She slept well. And only once in a moment of morphine withdrawal did she verbally assault a nurse with the slur of “crazy cat” and threaten to break her bones. I’m sure she later apologized. 

We were discharged two days post-op, stayed one more night in the hotel, and headed back across the entire country to home, sweet home. 

Her skin grafts were taken from a long strip incision along her low belly/bikini area. Similar to cesarean incision. Though she didn’t want to look at it or talk about it – it didn’t seem to cause her much discomfort over the last few weeks. The strip bandage finally fell off today and the incision healed beautifully. It’s hard to watch the scars accumulate. They are constant reminders of how much this baby has endured. 

Poppy adjusted to life in casts with ease, humor, and the occasional mild meltdown. This child has a spirit like none other. It is quite humbling.

This morning, after 3 weeks and 5 days, we went to Poppys local Orthopedic surgeon and had the casts removed. There were many tears before the removal started. Poppy was surely feeling the energy of her mama and we both lost our composure for a good ten minute breakdown. We went to the cast room, covered her ears, and she LAUGHED the entire time the casts were being sawed off. Everything was removed sans some bandages that were wrapped around her hands concealing the brand new fingers. We went back to our room and I slowly started peeling away the layers. Unraveling the cotton that separated my eyes from the once-again-altered flesh of the girl I grew in my belly. I was so nervous. She was nervous. Everyone was nervous. 

And then there they were. My baby’s hands. 

She appeared unsure and hesitant to move or look too closely at them – but she also had some awe in her eyes. A glimmer of her imagining all the nose picking and ring-wearing and iPad swiping. 

We are now home. She has had a bath and is playing with a brand new toy, with her brand new fingers. 

It will take a few days for all of the pen marks, dead skin, and healing goo to fully wear off – so for now her fingers look raw and scabby – but they are not. They are healed. No open spots. Just residual gunk that I am taking care and time to address. 

We will fly back to Boston at the end of February for another surgery to release her middle and ring fingers. 5 fingers for her 5th birthday. 

Thank you for following us, supporting us in all the ways you do, and keeping my family in your thoughts and hearts. We feel the love.