As I sat under the bright lights of the Emergency Room this morning at CHKD so many thoughts were going through my mind and these are a few of them. How can I possibly be here again? Are they going to admit us to the PICU or the regular floor? I wonder if my favorite nurses are working today? Why didn’t I make a to go cup of coffee before we left the house?  And WHY is the Wi-Fi so terrible in the hospital?  As you can see by these questions, even in the midst of something terrible (like having your sweet babe hooked up to IV’s and oxygen) REAL LIFE still creeps in. It reminds me that life is still happening outside the hospital walls. That work has to be done, bills have to be paid, appointments have to be canceled and that no matter what, everything still goes on. So over these last 4 years of doctors visits and hospital stays life is happening… and on days like today I am reminded that WE are missing it.

Let me rewind since this is my first Blog post (I will give you the abridged version).

Eliza was born happy and healthy on April 12 2012.  When Eliza was 13 months we started to notice she was not meeting her milestones (mostly talking), when she was 18 months she had her first seizure and was diagnosed with intractable epilepsy,  at 20 months they discovered a hole in her heart, ASD (it has since been repaired), and at 24 months she was diagnosed with Autism. During all of this we were in and out of the hospital for recurrent pneumonia, different seizure related things and her ASD repair.

Back to today

So today is our third admission to the hospital since June 27. Both of the previous times we spent 12 days each in the PICU for recurrent pneumonia. Eliza’s neurological issues cause hypotonia which makes it difficult for her to clear her airway and fully expand her lungs. Now we are in this vicious cycle of pneumonia and we can’t get out of it. So needless to say my anxiety was at an all time high when we found ourselves back in the ER this morning. I can usually find a little peace, a little sign that we are good, that Gods got this, but not today. So I struggled. I didn’t text people back. I felt sorry for myself and for Eliza. I got mad at a doctor and told him that ” he really needed to tell me why this was happening again!!” and then I found out he was just a 3rd year med student so I apologized (they should really wear something larger then the little name tag). I wasn’t myself and I felt bad about it. I NEEDED MY SIGN!!

At about 3:30 we were admitted to the 8th floor (not the PICU) and  Aaron came and we switched out so I could go home and do a few things and obviously go to Target (because you know life is still happening). While I was at Target I roamed the aisles and I searched for a “sign”, a “butterfly moment” (that’s for another post) something to lift my spirits and get me through this. I got nothing. Why did I feel so alone? We had so many people standing with us, ready to drop everything at any moment to come be with us. What was wrong with me? Why was I so sad?  So I got in the car and turned on my “go to” Spotify playlist titled “BE BRAVE” {and just like a movie} Oceans by Hillsong started to play and then the rain started and I cried, a lot, like literally sobbed uncontrollably and I drove (sorry mom) back to the hospital. I sat in the parking garage for awhile and I kept listening to the words of the song “In oceans deep my faith will stand” and I looked back at everything that we have been through these past 4 years and I was reminded (by a good friend), “Hasn’t HE always been faithful?”.

From time to time I just need little reminders that I am not alone and I can search and search but sometimes I just have to sit quietly and wait. That is the hardest part. Waiting. She is my baby, I don’t want to wait… but I will.

As I was scrolling through texts that I had received today I came across these words from a dear friend. It said in short “Your Victory is Coming”  Yes it is!!!

| Wait patiently for the LORD. Be brave and courageous. Yes wait patiently for the LORD. ~Psalm 27:14 |