I spend a significant amount of time thinking about Rae.
You know this.
I know this.
I think about her all the time.
I think about how much she’s been through and all that she’s going to go through.
I think about her future and I think about her past.
I think she’s okay, sometimes.
I try to write off her problems.
Then I think of everything that she has been put through since October.
Sent to a cardiologist.
An echo of her heart.
Sent to a GI.
Dairy and soy restricted.
More lab work.
Cystic Fibrosis test.
More lab work.
Switched to the hypoallergenic formula.
More lab and stool studies.
Weekly, sometimes twice weekly weight checks for almost 4 months now.
A neurologist appointment.
A orthopedist appointment.
And now, an endoscopy, flex sigmoidoscopy and suction biopsy.
And a feeding tube.
You know all this. I’ve documented every test, every emotion, every frustrated moment of her appointments is written and helped me through the hard days. The days when Big S just couldn’t be there for me. Days when no one was telling me what I needed to hear. Those really hard days when my pediatrician has expressed deep concern for her weight and made me even more afraid. Through days of endless googling symptoms and her possible diagnosis and WebMD and eating up every bit of information that I could that ended in heartbreak no matter what I found.
I write about Rae a lot.
I write about her as she is as a patient.
But what I haven’t written about enough is Raelyn Joy.
And she is just that, an absolute JOY.
After the appointments are over, and it’s just me and her, I am overwhelmed at who she is.
She is sweet.
She is FIESTY.
She is so loving,
She is strong.
She is funny.
And she is smart.
Almost any given moment that I am not doing dishes and laundry and generally overwhelmed with motherhood, you can find me on the floor, soaking in the sounds of her squeals and Little S talking to himself about cars and trains and the Muppets. And as soon as she notices I am there, she is next to me.
And stays there as long as I’ll let her.
The girl is fabulous. She’ll eat almost anything I put in front of her.
She loves playing peekaboo, every single day.
I will say, she’s not fond of sleeping, she wakes up 2-3 times a night on average, sometimes more. I like to think it’s just because she misses me, but really she just wants her 10 millionth bottle of the day. She does, however, wrap those tiny arms around me and pat my back while she drinks it.
She does this often.
And she does it at the times I need her most.
Yesterday when we were at the hospital, I clung to her while we waited to bring her back, and she clung back. She began patting my back like Big S does when I’m overwhelmed, and I felt a little better.
So while, yes, a lot of updates involve when tears are shed and uncertainty and fear is rampant, there is also an incredible amount of joy surrounding her.
She is vibrant.
She is beautiful.
She is an absolute joy.