Magic & Miracles

I’ve just realized that I haven’t blogged in almost 2 months. My apologies, life has been full. Mostly full of great things, making me wonder at how quickly time flies. June was the month of vacations for us. Ocean City with family, Salt Lake City by myself for the Jamberry International Conference, and then our dream vacation to Disney World. It was a whirlwind, and God was so gracious to answer my prayers regarding the trips.

It was a blessing introducing Wonder Woman to more of my extended family. It is our goal that she would meet all of our extended family, and we are getting there. This little girl has been deeply loved from afar, I hope that everyone gets to meet her. Jamberry conference for me was rejuvenating. A trip without kids is a pretty big deal, and it’s no surprise that it has been incredibly difficult to continue working my business in our new phase of life. I loved every minute I had with friends who encouraged me, who inspired me, and who keep me hanging on. Selling Jamberry is something I do for myself because I love it, I love having gorgeous nails (regular showers are too much to ask), so continuing to find the time for something that is mine is a struggle, but a worthwhile one.

And Disney, well that was magical. I went into this vacation with huge expectations. I even prayed about it. I told God, I know it’s just a trip, I know that it doesn’t change anything, but please God let this be great. I am so incredibly thankful that he delivered. Wonder Woman was a delight. Her wheelchair was delivered the week before, so we were able to easily transport her, she never had a melt down, her temperature was regulated, and other than some projectile vomiting, she was perfectly healthy. The boys were even wonderful. There was minimal whining and no real meltdowns. I don’t know what parent survives Disney with a 4 year old and 2 year old and no meltdowns, but we did! The cast members and characters were remarkable, so sweet and kind to Wonder Woman in particular that it made me cry. I saw a tear or too from Daddy as well. She was included, and she was loved. She was treated like a little princess, they saw her beauty and all of the things that make her special instead of the things that limit her. I needed this vacation. It was even more of a blessing than I had hoped.

However, upon arriving back home, full exhaustion set in. No surprise there. Laundry is still sitting, unwashed. (Thanks go to my mom who did lots of laundry at our Disney resort or I’d be in dire straits). We basically just sat around the house for days having “pajama day”, which is my way of saying, nothing is getting done today. Sunday we all got dressed and went to church, it felt good to be home and finding normal again. That day, our pastor’s sermon was about fear and anxiety.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. – Philippians 4:6-7

There was a yellow index card inside my church bulletin and at the end of the sermon, Pastor told us to write the fears and anxieties we were struggling with on the card. We were asked to place the card at the altar, to leave it there with God, where it belongs. I gently tore the card in half, handing a piece to my husband and then staring at the blank lines in front of me. It’s probably obvious that the first thing I wrote was the health of my children, thinking of Wonder Woman specifically. I prayed over the card and my kids, admitting to God that while I love my kids, He loves them more and they’re in His hands. At the end of the service I left it at the altar. To be honest, after that afternoon I forgot about it. Pajamas days were over and we were back to our routine of appointments and busyness. But Thursday, things came to a halt.

Wonder Woman had an evaluation for developmental pediatrics, she was in a room with 7 healthcare providers of different specialties. We were having a good morning, and the boys were having fun at home with a baby sitter they weren’t allowed at this appointment. Wonder Woman was content, interacting, and showing all of the progress she had been making. She even had her first taste of applesauce and did a great job eating it. Then, out of nowhere, she had a seizure. I had turned my back to set something down, and when I looked at her again her arms and legs were straight out and her eyes were huge with a look of panic, but without cries or sound. The only thing I was able to say was, “That’s not normal.” The doctor watched for a moment and told me she thought Wonder Woman was having a seizure. After about a minute the nurses went out to call our neurologist and it took another minute and a half for the convulsions to stop. Amazingly, I wasn’t scared. Not really. It was scary, but I knew that I was in the best possible place for her, so I was confident in everyone else taking care of her while I watched.

When the seizure was over, we walked down the hall to the neurologist and within minutes my girl was sleeping like a rock. Our neurologist admitted us to the hospital based on the reports from the pediatrician and Wonder Woman’s disposition afterward. We did labs, an IV, and the usual process. Little lady was not a happy camper. She got set up with an EEG and settled down again, with wires all over her head. Daddy came to bring me food and check on his girl and then he left to get the boys. Just after he left, our neurologist came back to the room. We were talking about how things were going and I was describing the seizure and how Wonder Woman had been since our last visit in May. In the middle of our conversation Wonder Woman had another seizure making it undoubtable and cuing the doctor to the course of action she should take. And yet again, I wasn’t scared.

Now, I can’t lie and say that I was never scared. I asked the doctor to explain the problems and dangers of seizures. She pulled no punches; she answered death. It is possible that during a seizure, Wonder Woman could have  cardiac/respiratory problems and stop breathing. This would be especially dangerous if it occurred in the middle of the night. I tried to take all of the information in, knowing that I have to face the hard stuff, the worst case scenarios, to be adequately prepared. But after this conversation, I laid down on the vinyl chair/bed with a pillow and a blanket and cried for a few minutes until I fell asleep from sheer exhaustion.

The rest of the stay was uneventful. Well, except for that time when I got pooped on and had to ask the nurses for a change of clothes. Wonder Woman didn’t have any more seizures at the hospital. We made adjustments to her feeding schedule along with a change in medicine for her reflux and for her spasticity, so she left with an even better health care plan than we had going in. She’s adjusting well, as are we. Her first meal of the day comes with 5 meds (soon to decrease to 4), so I think it’s harder on me making sure I get all the right measurements and don’t forget one. I’m not a morning person, so doing this before coffee is a feat.

We made it through the weekend and back to church on Sunday, though late and harried from the rushing. I sing in the praise team, and I was standing on stage, looking at the floor while I listened to morning announcements. All of a sudden I remembered those pastel colored cards on the floor the prior week, my yellow one in particular, and God gently hit me upside the head and said, “Remember?” I had prayed and thanked God in the hospital for the timing of Wonder Woman’s seizures, but I had forgotten that I specifically prayed on Sunday for her health and I had gotten a resounding answer. I’m going to line up all of the pieces for you so you can see how they fell into place. I was pretty slow on the uptake, so I don’t want you to miss anything.

God had led out Pastor to preach a sermon series on Philippians, it had been going on for months, in fact I had missed weeks of church while we traveled, and yet 4 days before her first seizure he preached a sermon that ended with my very specific and heartfelt prayer. The appointment we were at on Thursday had been scheduled for months. Back in May, when I last met with the neurologist, is when the pieces started lining up for Wonder Woman to have an appointment at the exact time she would have her first seizure. The boys were with a trusted sitter who did not have time limitations; I had tried to take them to childcare at the hospital, which would have limited us to 2 hours, but was told they were full. God had a sitter planned for them so that I wouldn’t have to worry. The seizure happened after almost a month of traveling and between our next month of travel. How terrifying would it have been in the middle of Disney World or the middle of nowhere, hours from home and the doctors who know her? The timing of the seizure in front of the neurologist and on EEG was miraculous in itself. But what makes it more wonderful is that we had done an EEG back in May, about 2 months prior, and the doctor was immediately able to see the difference, further confirming that it was in fact a seizure.

You see, kids with hydranencephaly are complex. Wonder Woman has almost no brain cortex at all. (I say almost because her neurosurgeon says there’s nothing at all, and her neurologist said there’s a tiny bit of cortex at the back, so whatever is there is infinitesimal). Because of this, many doctors make the assumption that they cannot have seizures. While every hydran family I know deals with seizures, I was still working with doctors whose first assumption was that she wouldn’t be able to have seizures. Wonder Woman having hers right there, in front of doctors, on monitors, made it perfectly clear and allowed us to start treatment without doubts, without insecurities on my end, and without hesitation. This my friends, is what I call a miracle.

To make it all more beautiful, as if it wasn’t already, as I stood in church on Sunday with God reminding me of all He had done, He said, “Tell your story.” I know this was from God because I don’t like talking in church, and I certainly don’t like doing it on the fly (you’d be shocked how long it takes me to write one blog). The roiling of my stomach and general desire to run off the stage and throw up were further confirmation that sharing this story was not my idea at all. But I was obedient, and I shared the wonder of God and His ability to break the chains of fear in our lives, and how I got to experience it first hand. I saw a woman near the front, tears in her eyes matching mine, and she told me after the service that what God had me share was exactly what she needed to hear.

Oh how blessed am I to be in the middle of God’s purpose for my life. How blessed to be the parent of this wonderful little girl who’s purpose is far greater than her limitations would dictate. This can be so incredibly hard. I know God has a greater picture and purpose, but sometimes it gets lost in the day to day difficulties. God knows that too, and He still trusted us to be here, and gifted us with the vacation of our dreams, with many great days in a row, with a just a glimpse of His power and how He really does work all things together for good.

“You’re blessed when you’re at the end of your rope. With less of you there is more of God and his rule. You’re blessed when you feel you’ve lost what is most dear to you. Only then can you be embraced by the One most dear to you. You’re blessed when you’re content with just who you are—no more, no less. That’s the moment you find yourselves proud owners of everything that can’t be bought. You’re blessed when you’ve worked up a good appetite for God. He’s food and drink in the best meal you’ll ever eat. You’re blessed when you care. At the moment of being ‘care-full,’ you find yourselves cared for. You’re blessed when you get your inside world—your mind and heart—put right. Then you can see God in the outside world.” Matthew 5:3-8 (MSG)