Let's face it. Therapy just isn't on the table. I don't have time to fit it in right now. There's got to be another way to feel less alone with the freedom to start and stop, where and when I want to.
I reached out. I was vulnerable to individuals who parent children with CHARGE syndrome in a Facebook group. I asked for recommendations for books or podcasts about managing the stress and/or trauma of parenting a medically complex child as I was preparing to head to bed. I curled up on the bed with my laptop, Josh sleeping beside me and Kimber laying over my feet.
Do I need therapy? Absolutely! Do I have time right now? Are you kidding me!?! Let's pray someone suggests SOMETHING.
A fellow mom soon commented "What I Would Tell You" by Julie Keon. I quickly Googled the title, came across a brief intro to the text, and started reading.
Yes! Yes! Yes! THIS is what I've been looking for.
I immediately paused, pulled up Amazon, and arranged for a cheap paperback copy to arrive at my house within 2 business days. I clicked back to the intro and started back into the text.
Then, I got to an excerpt that felt like a sucker punch to the gut.
"And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing."
The wind knocked out of me. Tears streaming down my face.
Wow. She gets it...she really gets it.
I read on...
"I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B."
...and bawled my eyes out some more.
I had JUST talked to my mom about this earlier in the night....and that wasn't the first time I have discussed with her that - for my own sanity - I have to consider what could and would happen if Savannah were to not make it through the next surgery. I know that if I don't allow my brain to entertain the prospect of Savannah's premature death, I would be utterly crushed if it were to happen. The thought of such frightens me to my very core. I'm afraid. Afraid I would not be able to make it through the wave of emotion, grief, anger, frustration. Afraid of how I would respond. Afraid of the awkward encounters that would surely follow with those not knowing how to best support our family in our grief. Afraid there would be nothing left of me to pick up - just a shell of who I used to be.
For goodness sake's, sometimes I feel like I'm just a shell now. What would Savannah's death do to me if I already can't handle parenting her?
Just in the past 3 days, I've mentioned my daughter's future death - seemingly just in passing to those involved in the conversation. Our "Plan A" and "Plan B" are always at the forefront of my mind. I don't even actively think about it anymore. I say, "if Savannah is makes it through" as casually as if I were to say, "if I'm free next Tuesday."
Just last night I mentioned to Josh that I want to make the most of this upcoming weekend by staying in and not running too many errands outside of the house because we could very well lose her during or following Monday's heart procedure. I didn't even bat an eye when mentioning it. He didn't either. It's not that we're cold-hearted...just acutely aware of just how medically complex our child is. This conversation - and the mention of her possible death - didn't even phase us. We continued with our conversation about this weekend's plans - that his dad would be stopping by, that I'll need to catch up on laundry, and that we hope it's warm enough to enjoy some hamburgers from the grill.
And now, I wait. I wait two days to pick up a book that I'm both thrilled and terrified to read. I'm scared of the truths I'll be forced to face about what this life means for me. Above all, though, I'm relieved. I'm relieved to know I'm not the only one. That I'm not alone in these terrifying realities of parenting a medically complex child. I'm relieved to hear the words of someone who's been there, done that. I'm relieved to see in writing some of the thoughts that take up my brain on a typical day - thoughts that a "typical" parent would be horrified to hear or see.
I plan to use this space to document my thoughts. More to come as I work through the book and process what it means for me to "be in Holland" instead of Italy.