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.
Lab work.
Sent to a cardiologist.
An echo of her heart.
Sent to a GI.
Dairy and soy restricted.
More lab work.
Stool studies.
Cystic Fibrosis test.
More lab work.
Gluten restricted.
Switched to the hypoallergenic formula.
Egg restricted.
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.


13,496 Responses to “JOY.”

  1. Jacqueline Mack | February 13, 2014 at 8:25 pm #

    You never fail to bring tears to my eyes with your blog posts. <3 You guys are amazing, Rae is such a sweet, beautiful baby girl!

  2. Anonymous | February 13, 2014 at 9:16 pm #

    What a precious beautiful baby you have…especially love that picture of Rae leaning her head on your shoulder. Such sweetness. It’s amazing how resilient babies can be. Keep posting on how she’s doing.

  3. Anonymous | February 13, 2014 at 9:27 pm #

    I have read a lot of heartfelt post on facebook, but this really touched me. When my youngest son was about 16 months old we had to rush him to the hospital due to a high fever and he was turning blue. We made it just in time for the ER to ice pack him. We almost lost him do to an ear infection he was being treated for. Thank goodness his Dr. was just getting ready to leave there. She stayed with him and my husband until I could get back home and pack some clothes. We learned he had a blood stream infection caused by the ear infection. I stayed in the hospital with him for a week, only to almost loose him again when we got back home. Back to the hospital again. Shallow breathing almost nothing. Then the ambulance ride to Eggleston childrens hospital where they informed me they needed to do a spinal tap to check for meningitis. Thanks to my sister and husband being there, I was spared having to watch. The test came back negative. He is now 11years old. Still small for his age and is in a few special ed classed. He is a wonderful child with a heart of gold. So stay strong accept all her love and love her strong when she allows it. She is beautiful. She is in Gods hands and he will see not only her, but her whole family through this. I still have to take my son in to the cardiologist, gastroenterologist, neurologist and who ever he needs to see from time to time. But he is worth every minute to me.

  4. Anonymous | February 16, 2014 at 10:29 am #

    I hope you had a lovely valentines day! From everything you post you seem like a wonderful mother and you have a beautiful family. You deserve a nice day, time to celebrate your love and your family, and a moment to forget everything you’re worrying about.