There has been a shift in the house.

My once dour, downtrodden, depressed husband is now....light, lively, loving. He laughs, smiles more, his eyes seem blue again, he's gentle with me, inquisitive even.

On the way to Amelie's cremation, he was singing to himself! It was shocking to my ears, I hadn't heard that in a LOONNGG time. I was silent, he was singing. huh?

I feel vacuous, drifting, quiet (which, for anyone who knows me, is ODD), dispirited, despondent. I have a constant headache from crying so hard. I haven't eaten a vegetable in a week (does a zucchini muffin count? i didn't think so). I have tons of stuff to do, errands, cleaning, I can't do any of it. I feel incapable, something I haven't ever really felt. I'm a go-getter by natural inclination, so this is foreign. I couldn't sleep last night, so I brought 'Amelie' and we snuggled in her bed with her favorite doll. A little cotton doll, brown yarn for curls and a black velvet dress, she named after herself, we call it, 'Amelie doll.'

I woke up alone for the first time on Wednesday. Hubbs had taken Bravery to school, the house was quiet. Even the dogs that normally bark were hushed, as if they too, were mourning the loss of our girl. No horrendous machines signaling Amelie's stats, alarming me. No nurses buzzing about. UGH the nurses. I love our nurses. I feel the loss of their companionship and camaraderie. My sisters in arms on the daily. The women who changed her diaper, pet her soft hair, read her books, cleaned her, cared for her, loved her. We would speak for hours in Amelie's room about deep, meaningful shit you would normally only reserve for your therapist. My night nurse, Abby, was like my soft-spoken angel, watching over my daughter so I could feel the warm embrace of my husband and relinquish control to sleep. My fav day nurse, Charity, we called 'The General' because she was in charge of, well, everything. I trusted her implicitly. I began to defer to Charity for all things Amelie. I even let Charity pick out her outfits, a task normally only granted to MOMMY (if someone put an outfit on her I didn't like, I would always change it. I knew what Amelie wanted to wear, even when she could no longer tell me).

We're both snappy at Brave though, something I don't care to do or admit, but it's true. I find my patience is short, my agitation simmering, easily ignitable. He's a darling boy, wild with excitement about summer. He keeps asking if he can have another 'kid' to play with (when normally he's all about having mommy and daddy to himself). He KNOWS. We laugh about what Amelie is doing in Heaven, I want him to SMILE when he thinks about it, not cry. I told him, "it's ok to be sad, but smile as well. She is with God. God is with you always. Which means, Amelie is with you. ALWAYS." I think I need to take my own damn advice.

I am deeply surprised at my level of grief. I know that sounds ignorant. It does to me as well. But I am. I have fought for this child since day one, and the fight is over. HER fight is over. I should be rejoicing. I have no purpose. I had no idea just how deeply traumatic it all was--I think I had to put it out of my head in order to keep that smile for her, keep moving, keep believing. My energy was infectious and I truly believe in the power that God was working within me. I danced in the living room, sang loudly in the car, cooked amazing dinners, smiled, laughed, worked out, had grace and forgiveness, unbridled enthusiasm. I was Magic Johnson on '85 Lakers and cancer was Celtics (if you haven't seen the ESPN 30for30 on that, watch it immediately). I stayed up all night with Amelie, then got up early, took Bravery to school, hit the gym, yelled at insurance for two hours, had lunch with a bestie, cleaned, cooked, took more care of Amelie, picked up Bravery from school, massaged Hubbs weakening, fragile emotions, then stayed up all night with Amelie again. Most of the time, I felt joyously hopeful, even in times of total duress and utter bleakness in the ICU. I kept my faith strong as a mu$% f*#%r. I kept it all together. (Of course, with the incessant help of our massive support system, my mom, the donations, all of it. that cannot be understated, and the guilt of that can be all consuming for me.) I kept cancer at bay. I kept cancer from infecting, destroying, murdering all that I loved. I wasn't perfect, make no mistake. I totally had huge eff-ups. Lost my temper, was very hard on the hospital staff, demanded perfection, relied too much on Hubbs, who was drowning, judged him too much, was too strict with Brave one minute, totally lax the next. Yes, I made mistakes. But not many. I rose to the challenge like Rocky Balboa ran up those steps, only with better fashion, more pizzazz, WAY more intellect (sorry, Rocky, you're no Nobel winner), more love, sunny Cali-style. I do not feel arrogant or boastful in claiming it, b/c I know it's true. The doctors worked their piece, I worked everything else.  and by everything, I mean, everything. Which is why I feel so empty now. I felt that power leave me when her soul drifted away. I will find it again, I know b/c I trust in HIM, but.....for now....I just feel the vacuum.

When I ask Hubbs about his state of being, he very clearly responded: "I feel inexpressible calm and peace. Her soul has been redeemed. She was not living for a long time. Caring for her in that state was not enjoyable or satisfying or rewarding or pleasurable for me in any way, like it was for you. not at all. I was tormented by it. Every time something happened, in the ICU, a small cold, a bedsore, or even the slightest fever, my whole body would shut down. I felt like I had stomach cancer from stress. Knowing she died on JT's birthday, shows me the POWER of God's perfect timing. I am so at peace because of it. You will feel it too, my love. In time."

I realized, after he said that, I would have, contrarily to Hubbs, JOYFULLY cared for that child, in that state, the rest of my life. I would have relished it, lived it with honor and pride, knowing so clearly what it means to live A HOLY LIFE.  It would have been stressful, sacrificing, difficult, painful, but it would have been holy. That kind of calling, when it's so clear, is profound.

That has been taken away from me, stolen from my heart and hands. WHY? Because I asked God to take it away from me. I begged for MERCY. He granted Amelie MERCY. It's so selfish of me to want her back in that state of total suffering, so selfish, after God has given us SO MUCH.

Auntie Emily said, 'your purpose will reveal itself.' Having a child with special needs, a husband with PTS and TBI, then cancer, my purpose has always revealed itself whether I liked it or not. She's right.

So, God, maybe next time then, can my purpose be to win the lottery and give all the money away to those who need it most? Kind of like Oprah? That would be a nice purpose.


Amelie's Mommy