On Friday, when Emmy was terribly sick with a migraine and throwing up, I was reading blogs posted on The Mighty, which is a web page dedicated to families with disabled children or went through disabilities themselves. I came across a short-story that made me want to click on this family's blog site. As I was reading, I just felt so bad for this little girl who had a genetic disorder that was "turned on" from a sickness. She intrigued me so much that I just kept reading through her posts and I came across one titled "The Day We Got Our Daughter's MRI Results". That hooked me and I read on. I read and cried because this woman wrote exactly what we felt. Why was this happening to our daughter? How could her brain look that bad, even though she was swimming the day before? How much brain damage was there? Nothing made sense, but this woman's words were the same words that had come out of my mouth 9 months earlier. If you want to read the blog, the link is below.
I can't answer the whys and hows, but all I know is that right now, this very moment, God gave Emersyn to Randy and me to take care of her, to love her and make her feel as comfortable as possible. We have had our share of very large boulders in the road, but after Saturday's surprise seizure, we are very certain that we were given to Emmy to make a difference in her life. It was so weird as we were waiting for her to return from the MRI, I kept telling Randy how blessed Emersyn is that she was not given dead-beat parents that would ruin her life and not take care of her. I was just so thankful that God chose us, even though it is so painful watching our baby go through this. I just know that God has a plan for her life. I KNOW this because she has been attacked her whole life. She has almost drowned numerous times, almost run over, combated emotional feelings of rejection and fear (at 3 years old) and even had to put up with a mommy who was an emotional wreck for years, having crazy spells of screaming just because my thyroid wasn't working and Emersyn's free-spirit (most often strong-will) would drive me batty.
Getting back to Friday... it was a horrible day. I literally had my hand on the keys to take her to the ER, but I knew that this migraine/ throwing up episode would end up just like the others before. We would finally decide to head to the ER at 8:30 pm, they would screw up 3 IVs, Emmy would all of a sudden feel better and we would go home at 3am. And guess what? At 9:00pm, she did feel better and chugged a bunch of water and went to bed. Now, I had already texted our neurologist to let him know what was going on, and he said if her vomiting didn't stop, to take her in, which we would have in a heart beat! I also told him I would text him in the morning if we decided, after all, to have her checked out. Emmy slept pretty poorly that night, but she had slept the whole day before, so I figured that was normal. She was also pretty shaky and very stiff on her dystonic side, which is normal when she doesn't sleep well. But she did have an awesome day! We laid in the grass, she hung out with our neighbor's daughter and Emmy just seemed to be doing fine. Around dinner time, we brought Emmy inside and Ella put her on the couch. I had Eli go give her some loving, because for some reason, for about 3 days I had been on a "kiss Emmy any free moment you got" kick. I kept telling her that "today is a holiday, called Kiss Emmy Day" and she would smile and let me kiss all over her. Well, after about 5 minutes, I had dinner finished and went to grab Emmy off the couch to eat and I noticed she was drooling. I instantly looked in her eyes and they were fixed to the left. Ella called for Randy, Eli took Everett upstairs and then I called 911. I hate 911. I hate ambulances. But I knew something was wrong, because she has never had a seizure, except the first BIG seizure she had when we initially went into the hospital back in July. Can I just say that the ambulance took forever. But it gave us enough time to pray over her and make sure she was breathing, which she was. I went in the ambulance with Emersyn and Randy followed behind. My wonderful neighbor snatched up Everett, covered his eyes so he wouldn't see Emmy on a stretcher and took him to his house. Then our other lifesaver, Melissa, came to stay with the kids and calmed them down by comforting them with prayer.
Roads are a funny thing. Some look really well travelled and some look hard, but end up being a very travelled road. Well, this road seemed like the same old road we keep coming down. Emmy had a seizure A SEIZURE and we just knew a new lesion formed. How could this mean anything else? I was trying to stay focused on God and his promises, but our daughter was unconscious after getting 3 doses of anti-seizure meds to get it to stop and I just couldn't imagine anything good could come out of this. Our neurologist just happened to be on call that night and came in at 9:00pm to look her over and take a look at the CT scan they performed on her (they wanted to make sure she didn't have any brain bleeds). While he was reviewing the CT scan and getting us moved to PICU (the awful place we lived for 13 days back in July), Emmy woke up and asked to go pee and get a drink. Oh, thank God!!! She moved her lips with a little sound and even moved both sides of her body. I was so afraid that she was going to be paralyzed on one side, but she wasn't! So our neurologist came back in and we told him Emmy used the bathroom and he smiled so BIG! He really felt that this was just a seizure and we weren't to worry, but he went ahead and started IV steroids and upped her seizure medication, just in case it was a relapse. He then said she had to wait until Monday to get an MRI, because he wanted her stable and didn't want her seizing on the MRI table. We then moved up to the PICU and didn't sleep a wink. Like usual.
Then next day, Emmy woke and was mad she was in the hospital with an IV and wanted to go home. Well, we knew that wasn't happening so we patiently waited and were moved to the 8th floor. Emmy seemed totally fine and the Dr. even tried to talk me out of the MRI because he just didn't feel anything was wrong with her. But we needed proof, because her little brain just can't take anymore lesions and damage. So Monday morning, we first had an EEG that showed the right side of her brain is what seized (the same section that seems to have that inflammation spot that won't go away) and it was operating slower, which is normal after a seizure. Then we rolled over to the MRI floor and Randy and I patiently waited and prayed that nothing new would show up. When she woke, we headed back up to our room and played the waiting game to hear back from the neurologist.
Nothing new. NOTHING NEW!!! That seems sad to people who want to see change and healing and smaller lesions and even lesions that are gone, but nothing new was music to our ears! That meant that the seizure was just a seizure and it was probably caused from the brain mis-firing while it is healing and moving and changing and rewiring. I am sure the stress from the day before is what caused it, but as long as it isn't happening because her brain is being attacked again, we really are not worried about it. We are still moving in a positive direction, on this really narrow and steep road, uphill in the snow, but at least it is forward and not backward.
Tonight as I read from Emersyn's Sweet Bible Stories for Little Girls, I read the dedication page and this is what it said.
Zephaniah 3:17 NLT
For the Lord your God is living among you.
He is a mighty savior.
He will take delight in you with gladness.
With HIS love, He will calm all your fears.
He will rejoice over you with joyful songs.
I needed this. We still don't know why, but we do know that is is where we are RIGHT now. We are here for Emmy because she has a mighty calling on her life. She has since she was born. Each one of us is so important in her life and I see it everyday. Ella calms her and gives her strength. Eli can take her out of a negative mood in seconds and make her feel so loved. Everett makes her remember what she is fighting for! And Randy and I are her protectors, cheerleaders, therapists and prayer warriors! God knows what is going on and while I don't know why He intervenes so apparently in every aspect of our lives except the miracle healing we all desire, we will remember that Faith is the substance of things HOPED for and the evidence of things NOT seen. We can't even say that God hasn't intervened on Emmy's behalf, because she could have died. Twice. Her brain was beat up bad, but God has kept her and even has given her movement in her limbs where the neurologist still can't understand how. She is a miracle and so is where she is today. And we will keep on this road and carry her all the way to the top.
God is Mighty to Save
and He truly calms our fears
monthly, weekly, daily and by the minute.
The blog I completely related to http://www.robandannemarie.com/2015/01/the-day-we-got-our-mri-results/#comment-326
