“Surrender to what is. Let go of what was. Have faith in what will be.” – Sonia Ricotti
I feel like I’m just now catching my breath after a weekend of worry. Eliza came down with a temperature on Friday evening. While that’s scary enough for any young infant, babies with PWS rarely get fevers, so it is typically followed closely (often in the hospital). Thankfully, she seems to be feeling better now, but she still had a temperature when Derrick checked her in at her appointment with the ENT yesterday. The doctor scoped her throat to ensure there were no obstructions before reviewing the report from her recent sleep study. Bottom line: Eliza needs a swallow study to determine whether milk is aspirating into her lungs during feeds and also needs to remain on oxygen until another sleep study is conducted at 10-months-old.
The news hit me hard…not because either intervention is dangerous or even uncomfortable, but because it feels like I’m losing hold of all the optimistic signs of Eliza’s “special” success. Most babies with PWS need sustained oxygen and feeding tubes during infancy, but Eliza went through her entire five-week stay at the hospital without oxygen and had graduated from the feeding tube before anyone expected. I treasured those little victories! And the NICU was supposed to be the hard part. Now that we’re home, we’re supposed to be getting better, stronger, more efficient. Instead, all the things that we didn’t need…didn’t even worry about…are surfacing as everyday parts of our life. And I am having such a hard time letting go! I carry the oxygen tank up and down the stairs and look down to see a baby who wears the reminder of all the things I cannot fix. It seems like proof of her diagnosis…of the differences that will draw eyes and leave observers wondering what is “wrong” with her. And I hate that. I hate that anyone will ever in her whole life think of her as anything less than perfect – because perfect does not mean typical. I want to escape from the growth charts that show her as a tiny dot below the lowest green line, from the bewildered looks from strangers when I explain that she is two months old and not a preemie, from the assessment reports that indicate her as a strong candidate for more studies, for growth hormone therapy, physical therapy, occupational therapy. I look at her, and I see a beautiful baby girl with porcelain skin and her daddy’s red eyebrows who loves to cuddle into my chest. I see Eliza!
She snoozed peacefully beside me as I wept over this post…letting all the grief and worry pour out. And then she woke up hungry and eager to be held. So with tears still streaming down by face, I picked up my perfect little girl and got the smile posted here. And I remembered. She is not miserable. She is not worried. She is living this moment…just this one! Happy to be held by her mama, get her milk, and look at me with that joyful grin. What wisdom! What a gift!