It is impossible to detail the heartbreak we brought with us. "She has a terrible disease" we repeated to those who needed to know.
The onset of grief is much quieter and far less cathartic than how it is portrayed in the movies. There was no yelling. There was no throwing or crashing or outbursts of any kind - these all provide release; we experienced none. There were tears and there were questions; the kind without answers. Oh God, have mercy on us.
But Annabelle was there with us. She was alive and beautiful, and so we lived. We had a family party for her 1-week birthday. We didn't talk about her like someone already gone. We took pictures and everyone smiled. And the smiles were genuine.
Gay Walker from Trinity Kids Care - who had heard my desperate rejection of hospice care the day before - came to see that we were settled in. She would take our case and provide the support we needed in order to continue living even in the shadow of death.
What we never got was the answers to the questions that plagued us - when? how? You can pretend it doesn't matter. You can say that you're just going to enjoy every moment and live in the now. But you can't; you always want to know. I'm sure knowing would not have made it any easier, and since there was nothing anyone could tell us, we just did the best we could.
When Makayla came home from the hospital, she slept next to my bed for a month before "graduating" into her own room. Annabelle spent the first night home in her own bed, in her own room - not because I didn't want to be beside her every moment (I so desperately did, and spent many nights in her room), but because we wanted her to get to use her room for as long as she could.
Annabelle’s condition caused muscle weakness, so she didn't move very much, but then most newborns don’t. In so many ways, she was a typical baby, and if you didn't know, you wouldn't guess that she was dying.
We went to the beach, Disneyland, and Oak Glen.
Makayla was over the moon to have a sister. She held her hands, taught her signs, traced her feet with crayons, sang to her when she cried, sat with us while she nursed, and helped me change her diapers. The girls bonded instantly, and I feared the day I would have to explain why they couldn't play anymore.
Between visits from hospice nurses, we played at the park, did crafts, and spent time with family. From the outside, things looked wonderful. Our hearts were breaking, but Annabelle deserved a full life.
When we dedicated her at church, we fretted over what to say - how could we share such news with our church family without casting a shadow over the sweet life she was here to live? So after much thought and prayer, we kept it very short and very simple. And we shared her life verse from 1 Peter 2:
Therefore, rid yourselves of all malice and all deceit, hypocrisy, envy, and slander of every kind. 2 Like newborn babies, crave pure spiritual milk, so that by it you may grow up in your salvation, 3 now that you have tasted that the Lord is good.
The Lord is good. He MUST be good. I do not say this lightly, or thoughtlessly. I do not say this because I've always gone to church so I guess I better believe in God. We have seen what it means to fear the Lord. He is mighty and powerful and capable of anything. We have looked into the face of death and know that Christ overcame it. God did not give us the miracle we hoped for. I don't know if I'll ever know why. There are all sorts of canned answers, but none of them are helpful. He chose not to. That's the only answer that makes sense. That doesn't mean He wasn't merciful.
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