Thursday, February 13, 2014

Throwback Thursday

I came across this picture a few months ago, my dad took it on Christmas day 2 years ago when we were still clueless as to what was causing my baby girl so much pain.  My mom brought Christmas cookies for Junebug and I, she hadn't been interested in eating in a few weeks so to see her so excited about eating cookies made my heart a little lighter that day.

Last week I went back to the same hospital where this picture was taken to visit a sweet little boy who was having some serious issues. The same hospital where my twin sister, Lindsey, works as a nurse.  We spent about a week there while doctors speculated as to what Junebug might have, they tried a few treatments unsuccessfully and were humble enough to admit she needed to go somewhere for more specialized care.  A few people remembered Amelia and I, I think mostly because of my connection with Lindsey but it was sweet that they mentioned remembering our stay. 

It was a bit of an emotional flashback to be there.  The smell of disinfectant; seeing the tubes, wires, and meds; listening to the beeps of monitors and alarms; remembering how exhausting it was caring for a child in the hospital.  I found myself checking stats on his monitor and looking at the entry points of his IV's just like I would if he were Mia.  I wanted to pick him up, rock him, and try to make it better. 

I was reminded of all the songs that I sang to Mia over the many weeks we were in-patient. One of my favorites is "Can I Stay" by Ray LaMontagne. 

Can I stay here with you
Till the morning?
I am so far from home
And I feel a little stoned
Can I stay here with you
Till the morning?
There's nothing I want more
Than to wake up on your floor

Ever since my experience with Junebug I've felt that working with in-patient children and their families has been a calling of mine, so many nurses and child life workers have touched my heart I would love to do the same.  With 3 children under 6 I may have to wait a few more years for a career change though.  I envy my sister so much for being able to positively impact so many lives every day that she works. 

I can't believe it's been 7 months since our last medication, I feel so blessed that she is thriving and doing well. I don't find myself thinking about her health much at all anymore, my anxiety about it is very infrequent and even when I feel panic setting in I am able to remind myself of how well she's doing and I can usually talk myself out of it.  I feel like July will be here before I know it and we will be celebrating one year medication free.  I know I've said it a hundred times but I just can't believe how far we've come, I feel like the luckiest Mama in the world having her here with me and as healthy as she is.


  1. Thank you for your blog, you give me hope that our daughter will be medication free someday soon. Hannah was diagnoised October 16, 2013 at the age of 8 and we take a daily shot of Kineret. She is doing great and her counts are looking really good. We are up to 9 week visits and we should be moving to 3 month appts after are next appt in April. This diagnosis explains a number of her delays we have experienced over the years. I pray your daughter meets her anniversary and continues on the uphill road to more successes.
    Thank you

    1. Hi Becky, thank you so much for your kind words. I'm a member of a wonderful group on facebook, it's a closed group specifically for parents of kids with SoJIA. If you would like to join please email me!

      Hoping and praying for remission for Hannah.

      Megan and JuneBug