You are so beautiful…to me. You are so beautiful….to me. Can’t you see? You’re everything I hoped for. Everything I need. You are so beautiful to me.
What you are hearing in your mind are the lyrics to a wonder-filled song written by Houstonian Billy Preston along with Dennis Wilson, of the Beach Boys, one night at a party (seriously, check it out for yourself). The version we all know, Joe Cocker’s version, seems bittersweet, mourning even. The original, though, was created with the most upbeat, inspirational and jaunty of sounds.
This song is Charlotte’s song. I have sung this song to her every single day of her life. She has heard those words proclaiming her adoration since before we knew of her diagnosis. I sang those syllables when I could barely open my eyes through the tears during the mourning of the life we imagined for her. I rock her to sleep singing it every night and she watches me, anticipating my next sounds……..And I sobbed every moment of it the night I took her back to the hosiptal for a seemingly simple “neurotypical” infant illness.
Several days ago, Charlotte spiked a fever. She has such a calm demeanor typically that we had no reason to suspect anything was wrong. So when the caregivers at our church shared she had cried the whole hour and wanted to come find me, I knew in my heart something was very wrong. Afterward, at home, her fever was 102.1 and climbing. Being a Sunday, calling the pedicatrician was not an option. Tylenol, rest, fluids… By 11pm, it reached 103 and she was breathing rapidly. And then I was scared, as any mom would be. Nothing out of the ordinary. I felt as I should, genuine concern for my baby girl and completely unaware of the post-traumatic stress I would soon endure.
As I pulled into the parking lot of the Texas Children’s Hospital Emergency Room, things began to change in me. There was a tightness in my chest. “I’m just tired and want to get my girl home. We’ll get out of here and I’ll be fine.” Making mental checklists of what needs to happen tends to be my go-to in tough circumstances (at least until I get my head straight and remember to pray) SO…”Turn off the car ( feels like I can’t breathe), grab my purse, open door back hatch (deep breaths), take out stroller (still breathing), get diaper bag, don’t forget the formula that slid out (deeper breathes), Oh, don’t forget the baby (It’ll be ok)……” As I strolled up the under-construction entrance ramp that smelled of musty pine wood I began shaking. The conversation that transpired is hard to recall. Lots of “Please fill this out.”, “Are you giving her enough fluids?”, “How many wet diapers has she had today?”, “I don’t know.”, “I don’t know why I’m crying so much.”, “Can you hold her down?”, “I’m sorry I’m such a mess.” “………catheter…. She’ll probably cry a lot for this.”
But what I felt was major fear. Fear of what they may tell me. Fear of what they may not tell me. Fear of the emotionally disconnected staff and the stupid monitors and unwelcoming gloves. Weirdly, fear of the underlying presumptions they had of the kind of mom I am to my precious girl (probably an admittedly incorrect perception). And in between all the moments of fear I’d just hold her, singing through my tears, Joe Cocker’s version. I mourned this for her; this whole entire event and every single one that could follow simply because she is a beautiful baby who happens to have Down syndrome. Who could possibly, but may not, have renal function issues. Who might eventually, but probably won’t, develop Leukemia. She may have a heart defect, but we’re really just not sure yet… so off to the hospital we go with every “neurotypical” baby health issue just to be safe and expose ourselves to the very same environment that so stressed our family just a short six months ago. And we will, absolutely, willingly do so.
We left several hours later, with a simple UTI diagnosis, antibiotic perscription, and a referral to follow up in two days. Totally “typical”…and the doctor never even questioned her renal function. My my mind was a swirled up mess. I had worked myself into an absolute panic and allowed our NICU experience to over take me in those moments.
PTSD was really real for me that night. It reminded me of all the lies I’ve so intentionally protected myself, my family and, most importantly, Charlotte from for the past six months. The lie that she’s different in a bad way. The lie that says her body is broken. The lie that breaks this mama’s heart to pieces to consider ever returning to place whose purpose is to give health, but unintentionally provides doubt, and anger and fear….all self-perceived.
But today, I’m choosing to believe my girl is completely healthy and perfectly made. Today I know, without a doubt in my heart, she has great purpose in this world. Today, I’m choosing to sing my girl’s song the Billy Preston way.
The Lewis Pride 