A jumble of thoughts

Luke, Dillan, Dakota and I are home again. We took a brief trip into the Sequioas to spend time together as a family. Dillan absolutely loved it. He got to play with us both nonstop, helped make campfires, went fishing, rode in a kayak, hiked around, ate a ton of junk food...you get the idea. Physically, it did wonders for Luke and I - we both slept a lot and all of the physical activities did a lot to relieve some of the stress.

Coming home was really difficult. Not only did our house feel really big and sad and empty, but its almost as it the grieving we should have done over the last few days just kind of stored itself up and came out harder and faster once we went to visit Maddie at the cemetery. My heartbreak feels new again, the sadness is unbearable and I am, once again, at a complete loss at how to function.

I spent a lot of time thinking about this blog - I want to continue writing it. All along, I’ve written it in hopes of helping other CDH families, while at the same time keeping our friends and family informed. And I really want to people to read it and see the beauty in Maddie’s short life, eventually see the hope that will spring from her story and support us as we figure out how to walk through this horrible tragedy. And I’ve reread most of my old posts and think i’ve accomplished all of that. So going forward, I’m going to attempt to stay true to those goals. Too much crazy or anger or heartbreak and Maddie’s story will get lost in my turmoil.

But right now I want to share some of the crazy and the anger.

First the crazy. I know everything I’m feeling right now is “normal”. I’ve been reading the books and talking to the counselors and understand, at least intellectually, the grief process. My mind absolutely cannot accept that Maddie is dead. It is a deep rooted denial - totally uncontrollable. I feel her weight in my arms. I feel her kick, roll and punch in my stomach. I wake up feeling as if I’m in labor. I fight the urge to go to UCSF to visit her. Every time my phone rings and I don’t recognize the number, I expect to be told that they’ve made a mistake and Maddie is waiting for me at the hospital. Or I expect it to be one of our nurses telling me that she needs me and I need to get there as fast as I can. I feel her presence. I hear her voice. I ache for her constantly. There is more, but the reality of her gone-ness is in direct violation of my mind’s belief that somehow, I’ll get her back and shes not really gone.

And the anger. Oh my God the anger. Thankfully most of it is directed at others, which i’m told is much healthier then being directed totally at myself. Toward myself, I’m mad at my body. HOw dare it still want to produce milk? How dare it wake it to pump every night at 2 or 3 am? How dare it still be shrinking and bear all of the marks of a recent pregnancy? How dare my c-section scar itch with healing? How dare my purple nail polish, painted the day Maddie was born, outlast her little life?

I’m mad that when Maddie’s really started to fail that Sunday, all of the medical personnel stopped speaking to us clearly and wouldn’t just come out and tell us exactly what was going on. That they waited so long to tell us how bad the TPN leak really was and that she may have caught phenomena from it and that the reason they couldn’t help her breathe or pee or draw back on her central line or reduce the swelling was because she was dying. I’m mad that I was unable to process how bad things really were until she was already gone. I’m mad I didn’t see it coming and didn’t spend every moment of her sweet life right by her bedside.

I”m mad at you. That I tried for months to find someone to help me explore the possibility of her death and instead, you reassured me. You encouraged me. You helped me look on the bright side and remember how optimistic the doctors were. And every time I worried about her dying, I felt like a bad mom. A bad Christian. Like I didn’t love her enough. And I was totally alone with my fears because you were so quick to stop me from expressing them. stop sugar coating everything with some happy positive twist when you do call or write.

I’m mad that you think I need space. Not once since Maddie died have I thought “oh, i’m so glad so and so gave me some space”. But almost everyone I have wanted to support me, hasn’t called or emailed or stopped by to give us some space. I have never felt so isolated in my entire life and you choose now to give me space? I’m not worried about being rude - if i need space, i’ll tell you. But right now, you’re not calling to give me space. Then you won’t call because you won’t know what to say. Then you won’t call because its been too long. And finally, you won’t call because there is nothing left to say. I don’t need space. When you call, we’ll likely talk about nothing at all or we’ll talk about Maddie. I probably won’t hear anything you say and won’t make any sense when i respond.

No one can speed up our grieving or dull the ache or reduce the pain. No one can bring Maddie back and put her into my arms. Just listen. Just be there.

disclaimer: many of you have been wonderfully supportive. thank you. and a big thank you from dillan for all of his new toys and books.