on this realness

i am drowning a bit at times. and i don't really swim well. i have a big fear of deep water, and if my head goes under, i try to take a deep breath. figures doesn't it? the person who invites others to breathe deeply would try to breathe under water (remember my earth mermaid wishes?)...

today, i am seeking the life raft that i have been finding in this space for almost five years. today, i am seeking the knowledge that i am being heard by someone who just wants to listen and not offer advice or "things will get better" or "just be positive" platitudes. someone who will just hold the space. (and i know this is so hard for us to do for one another. we want to fix. oh how we want to fix. we want to help. i know this. i am thankful for this. but sometimes someone holding the space is all a person really needs.)

today, i am honoring what is real in this journey we are on. i am trying to honor the truths and the beauty and the love and the fears and the shit. 

the thing is, when i look at this face and it cracks into a smile, i either forget just for a second that she is battling so much or another piece of my heart breaks off to float away. perhaps these pieces are gathering near the drain inside the space around my heart i create with each breath. i think somehow because she is such an easygoing happy baby most of the time, it feels like complaining to tell you the real stuff of how our days have been since she arrived. and just like i didn't share many details of my very difficult "high risk" pregnancy because i didn't want to seem like i was complaining, i have avoided sharing many of the details about these last few weeks. 

but, after yet another doctor's appointment, i just have to come to this space and be myself. the what is real me.

so here it is: ellie was born with a congenital heart defect. it sure does sound so very scary when you type it out like that. on one hand, just like with my "high-risk pregnancy," it could be worse. on another, it isn't a walk in the park. the "defect" is a murmur that could require surgery (of the open heart variety). at two weeks, we began our cardiology appointments. we knew what symptoms to watch for and at around five weeks, we began to see them. when we took her in, we learned that she actually was experiencing symptoms from a second issue. a "this could happen at any time to anyone at any age" heart rhythm issue that just happened to happen to our little one. this was what sent us to the PICU at five weeks. now that medication is helping, that secondary problem is (at least in this moment) pretty much under control and something that she will "out grow." at about eight weeks though (almost two weeks ago), we began to see symptoms of the murmur. 

so we are in a limbo place today. hoping she gains weight so she can nicely but firmly tell her heart to just do what it is supposed to do. giving her so many doses of medication each day we are trying to avoid our heads just spinning with it all. knowing she really might need surgery this fall. surgery. of the open heart variety. how does a mama even breathe thinking about her so new to this world little one having surgery. how does a couple even breathe when thinking about the piling medical bills and the fears and medicines and all of it and and and...

and yes indeed, i know, you just move through it. you just keep going.

having a child is like handing another human being a piece of your heart. because that is what love is. love for a child, a grandparent, a pet, a home. we sprinkle pieces of our hearts as we live. yes. this is what living is. this is what loving is.

we say in our own ways, with pieces of our hearts gathered in our extended hands:

i stand before you.
here.
(this is love.)

*****

tonight, after i wrote the previous paragraphs, i held a sleeping babe and felt this love and reminded myself yet again of the answer when i think about the question, "how will we do this?"

the answer is: we will live it.

we will live it.

*****

because i am so tender right now. because i have been holding it together for months. because everyone around me is quietly waiting for the "one thing" to be the "one thing" that pushes me over the edge and they will watch the roots keeping me grounded into this earth suddenly sprout wings as i float out of my body. because i need to just be heard...i quietly ask that you hold the space here more than share the stories of a friend of a friend who had this and was okay or not okay. i hope you understand what i mean by that. it isn't that i don't want your virtual hugs because those hugs (through your words) and prayers are the very reason i am sharing these words. i am being as positive as possible in almost every moment. i am holding onto hope. i am i am...but this is also very real and our journey has an outcome we do not yet know. 

and this is the phrase that comes to me (perhaps it comes to you too sometimes when you write in your space), i just need to come here and be seen. maybe it is the very writing of pieces of it all that will remind me that i see me. that i can hold the space for myself. yes. perhaps this is the truth i needed to find in this moment. perhaps i can give myself the gift of holding the space of all the feelings and letting them just be real and valid and part of it...part of me. maybe i can just let the feelings sit in the room and just be. 

it is okay.

we will live it.

(thank you for listening.)