Thursday, May 15, 2014

So here we are....another day of bad news. Emri had a sleep study done last week and I got the call today that the results were terrible. 8 apnea episodes an hour??!? 8?!? How have I not caught on to this? There have been plenty of nights that I have snuggled up to my little girl and listened for signs of apnea. Her O2 is dropping at scary. She moves her legs a lot...why?? The pulmonologist that has read all of Emri's sleep studies wants her on oxygen at night immediately. We have to go the the ENT at Childrens and stick that dang scope up Emri's nose and down her throat...again. And we need more blood draws. I SO did not want to hear all of this.
I want to take a second to be honest...because being honest is only fair. It's only fair to anyone who reads this blog to get the real me. 

I just read a blog post highlighting special needs moms. It talked about how so many people respond to others' difficult situations with, "I don't know how you do it." Here's the my situation with Emri, what IS the proper way to "do it"??? To be frank, I have spent my fair share of time screaming, crying, and begging God for mercy. Even the moments where there isn't any major surgery or big echo appointment going on, I still get overwhelmed...I feel like I am constantly attempting to keep my head above water. Just yesterday I parked to pick Emri up from school and saw her class walking back from the playground. My eyes scanned the group for my tall, skinny girl...but then I saw her. She was the one being wheeled back to the classroom in the stroller. It might not seem like a big deal...but my head was spinning and my heart hurt. Did she feel sad that she couldn't walk all the way to the playground?? Was she looking at the kids walking in front of her and wondering why she wasn't with them?? Did she feel left out? The emotional part of me is drained. Always. 
I think about the verses in the Bible that talk about being anxious and I wonder, "God, HOW??" How am I supposed to sleep now...knowing that Emri quits breathing 8 times an hour every night??? I lay next to Emri and I can hear her extremely loud heart murmur...a constant reminder that her heart isn't healthy. Her heart is working so hard to counteract her leaky valves. It makes me feel nauseous. I have forgotten to give Emri her medicine a few times in the past two weeks. What mom just forgets to give her daughter life saving heart medicine??!? The guilt I feel every time I forget is severely overwhelming. 
So "how do I do it?"  I don't have a choice. I "do it" but I never feel like I am "doing it" well. I fail Emri, I fail myself, I fail God. How do I cope??? I cry, I talk things out, I write, and I PRAY. I am always praying for peace...for strength...that I am able to raise Emri to be strong....when I feel so weak. 
Please pray for us. Pray that tonight when we put that dreaded nasal canula in Emri's nose that she somehow musters the strength to accept it and fall asleep. Pray for healing...maybe the next sleep study will be better. Pray for true joy for our family...not just shallow happiness...but joy in the Lord. Pray for Brett and I...we love each other so much....but having a constantly drained wife can't always be fun. Pray for energy and strength for me to be the mom that God wants me to be for Emri and Abe. 
There will be a day with no more pain or tears...we know this and cling to it. But right now there is so much pain, and way too many tears.