There are moments that are so raw for me that I can hardly write about them. I'm ashamed for even thinking some of the things that I think. There are moments when I am so sad that I can't believe I'm even breathing. I cry out in agony just wishing that this was all different. I desperately want to enjoy each and every day with these children that are such blessings to me and yet they are moments that are passing me by as I sit in a daze. A fog that feels like it's never going to be lifted.
I can't even catch my breath as I look at photos like this one. Photos when everything that I feel inside is visibly confirmed to me. Behind me was a group of young, energetic moms with all of their healthy children. That was me not long ago. Laughing, joking, free. And sometimes I'd give anything in the world to go back. To go back to that naive place where my heart feels whole and not shattered into a trillion pieces with doubt, fear, anger, confusion, sadness and pain. It's a place that is comfortable and normal. And although there are moments, days and even weeks filled with a whole lot of happy, I'm never going back to that place. Julie told me through chat not long ago that 'I needed to go ahead and just plant a garden in Holland because it's my new home now.' And I needed that. Because it's true.
But it's painful. I remember the moment when Rache took this photo, I was bending down to let Mabel sit in the water and Harper's gentle little hand reached over, as if helping me hold her up. It has always been like Harper just knows that something isnt the same with Mabel. And it makes me want to die inside. I want to just throw up everywhere when I think about how this is impacting everything. I feel guilty for even thinking about having another child. I was happy and content with Nora and Braden. I baked cupcakes and played in the rain and laughed when we danced with the music too loud. I cooked dinner and I made love to my husband. I organized my home, I was involved in church. I was faithful to my friends and could maintain this life that not only looked perfect, but felt perfect in every way.
Last night I cried so hard in the arms of my sister. I cried over Mabel's vision and the hopelessness that creeps in. I want to feel great hope. I yearn to feel it. Why isn't it showing up for me the way that it should? Rache reminded me that I've never walked this before. That I can't expect my emotions or my every day to fit into some box of perfection.. They aren't going to. And that brought me comfort. I am not going to be, nor do I want to be, the poster child for how to walk through this with exceptional grace and hope. Quite honestly--I just want to walk through it and make it through.
There are days when I feel like nothing in the world could make this go away--except knowing. Even if knowing means something awful--at least I'll know.
And then there are days that I bargain with God. I read that its all part of the 'grieving process.' Grieving the life that I had planned. Grieving the first year of a 'normal' baby's life. Grieving the way that I should feel. Grieving my old self. Grieving a 'normal' marriage. Grieving cupcake days. Carefree days....
There are days that I would give anything in the world to be pregnant again and feel Mabel kicking inside of me. I have to remind myself that those 'strong, healthy' kicks were still her. She was in there doing that. She is that same baby that I wanted, dreamed about, and loved so so deeply. But I was anticipating something different for this year. Not doctors. Not fears. Not research. Not diagnosis. Not medicine.
...first rolls, first words, first food, first time sitting, making eye contact, first steps, get-togethers, first birthday...
Things that seem so simple and natural. Id give anything for those things. And I am jealous for those moments with her. I am jealous of others who are getting them. I hate feeling jealous. I hate so much of this.
But I love so much of this too. I love everything about Mabel. I love her toes and the way they curl. I love her giggle as I whoosh her from side to side. I love her swaddled, warm body in the middle of the night. I love her gentle spirit and her kind eyes. I adore every bit of her. She is incredible and she is changing me. I needed to be changed. As much as I long to go back and feel the things I used to feel--I would never truly want that again. I am grateful for this place and this time. I am humbled and honored to be the one chosen by God for this. Mabel is worth it.
No one, not even Jeni herself, could know how much I needed last night--sobbing in her arms uncontrollably gasping for breath. It's a release from deep within my soul. It is pent up and frustrated and needs to be released. For my sister to be here with me and embrace those few minutes was the greatest gift she could have given me.
And the things I have said in secret, in the quiet--things only God should know but I've spoken aloud. Things that I know are safe with Rachel as she listens intently and delicately...those are things that are sacred to me. And I am thankful for the gift of a constant companion in these hardest days...
These days that I feel and say things that I never thought I would. These days that are challenging me to the core of who I am. These days are beautiful, wonderful, unchangeable, priceless moments. They are the hardest and best days of my life. And I am doing the very best that I know how to do.
...just getting through...