Where do we even begin? Its been so long since I've written anything, an entire month. Not a whole lot has happened in this past month...which is a really good thing! Or I take that back...a lot has happened, life has happened. I have returned to work. I haven't been at work since February 12th, that was the day Richard took Ellie to the ER and they discovered the mass in her brain, they day of her first surgery, the day our lives were forever changed. I was very anxious coming back to work, of course I was welcomed with open arms and lots of hugs, but the reality that life was moving on, was a very weird feeling to deal with. So many said "I wasn't sure if you'd be back" or they were shocked to see me. This really got me thinking maybe I made the wrong choice, maybe I should have stayed home. I didn't feel like the Lord had led me in that direction, going back to work felt like the right thing to do...but it made me start to question our choice. I know better, I know not to let the information of the world sway me...but it happened!
Noah started Kindergarten! He loves it, loves having school rules, recess, and chocolate milk at school lunch!
Another reminder that life if moving on...we no longer live in a hospital, we are no longer hundreds of miles apart from each other, we are no longer on harsh chemo meds, we no longer have to talk via iPads. As exciting as you think this all might be, and as much as I've longed for this moment, I'm having a hard time actually living it.
A week into the new school year and Ellie got sick. For the first time since February 12th, Ellie had a fever. I've said before it has been a miracle that we have been able to keep her healthy this whole time, that even with a weakened immune system, this little girl never got sick...we all started to feel she was invincible. We had to go in through the ER, because like any other child...she didn't get sick during the middle of the day, it was Saturday night. Once we were finally put into a room in the ER, all the memories came flooding back in, we were in the same room as our previous trips, however this time we had a happy, bubbly kid with us, not the unmoving, non talking, undiagnosed child we came in with 7 months ago. Kind of a bittersweet moment.
We all knew we were going to be admitted, it was just a matter of time. Even thought it was the middle of the night, she was happy, eating popsicles and smiling for the most part!
Upon arriving in our room, we were met by the same nurse that took care of us our last few days when Ellie was first diagnosed. It was so nice to see her sweet smiling face when we arrived. I remembered from our previous stay that she was someone who loved the Lord, so it was nice to be in her hands! Within a few days, Ellie tested positive for C-Diff. Basically the antibiotics she takes on a regular basis also kills off the good bacteria in her stomach. The bad bacteria takes over and makes you sick. It was a pretty yucky hospital stay with lots of diaper changes...but we survived! This illness wasn't caught from anyone else...so I will still say that its a miracle we've kept her from catching any illnesses! Since our little hospital visit, Ellie has continued to recover nicely...her numbers all returned to beautiful within a few days, and we have been doctor visit free for a few days.
We got to enjoy Labor Day like most people do, with family! I was so excited to get to go to a cook out and not have to stress any part of it. The kids had a blast playing with cousins, and I had a blast enjoying my family, of course Daddy had to work, so we missed him lots!
We were also blessed by a group called Pink Heals. These wonderful people had attempted to visit us when we were still in Memphis, but we couldn't coordinate our schedules. But the Pink Heals didn't give up on us, they were driving through our little town on their tour and asked if they could come by and see us. We didn't tell the kids, so they just thought lots of friends and family were coming over. It wasn't until the big trucks came rolling down our drive way that the excitement kicked in. All Ellie could exclaim was "you see that!" or "check that out". She giggled with pure glee...(I was ready to jump out of my skin too) Its not every day people you don't know, go out of their way to make your child's day. They also came prepared with toys for Noah and SG. Their hearts were just as big as their trucks.
We are preparing to head back to Memphis next week. Ellie will have her next MRI and spinal tap. She will also have a ton of follow up appointments with her PT, OT, psych, eye dr, regular doctor and have her hearing screened again. I'm going with her this time, along with Nana. I haven't flown in years, so I'm very thankful to have my mom with me to help me navigate airports.
I continue to struggle with scan anxiety (scan-iety). I know what the Lord has told me about Ellie, I know what He said...but I still worry. This song came on this morning, and made me smile...
"Jesus answered, 'I am the way and the truth and the life. No one comes to the Father except through me." John 14:6
I know the truth, I have heard the truth...struggling to continually remember the truth. I asked Richard how he remains so calm, how he doesn't begin to stress. He just smiled at me and said "remember our promise, just today." I asked him what he thought was going to happen to Ellie, his answer "she's here to stay"....when I asked how he knew that, his response was "she's in her bed right now." At first I thought he was being smart about it, but I soon realized what he meant. She is here today and we have vowed to stay in today. Time spent worrying about tomorrow, is no good, and it goes against what we promised "and when I promise something, I never ever break that promise" (we've watched Tangled quite a few times this week!)
Music is what has been carrying me through every day. It helps makes those long car ride to and from work so much easier. There have been so many great song that speak straight to my heart and lift me up. One more for you.
So my vow for the rest of this week (ok maybe I should just say today) is to not let this world shake me. To know I'm not invincible, and I will stumble, but God will always pick me back up and surround me with people who will help get me back on my feet. I promise to remember His truth, and praise Him every day for it. Prayers that I can stay "unshaken" would be appreciated!
Prayers, Praise and Pink
~Carly
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