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unexpected troubles and blessings

September 26, 2017

Five years ago, on August 2nd, our Lukey was born.  He spent his first Christmas in the hospital with RSV, but other than that, he's been as healthy as a horse! Just last month we went to his 5 year well visit and his pediatrician said, "Lukey, we haven't seen you here in a year. You must have had a great year!"   And he did. 

 

Fast forward to last Saturday.  I was standing in the kitchen when he brought me a stack of flowers, hearts, and rainbows that he had drawn or had his sisters help him draw for me. He said something along the lines of, "Mommy I want you to have these.  If something ever happens to me, I want you to always know how much I loved you."

 

It kind of caught me off guard, but I didn't think much of it.  He's always-always-always doing sweet gestures like that  for me. 

 

Fast forward to the next morning.  He woke up totally fine.  He walked himself downstairs to have breakfast with his sisters. I had to run upstairs to throw some wet towels in the dryer.  When I came back downstairs, I found him lying in the floor, breathing, but otherwise unresponsive.  His pajama shirt was all wet from drool and his pants were wet as well. Terror filled every inch of my body. Mike came running down.  We immediately called 911.  Ten minutes later, help arrived. Mike thought that maybe he'd had a seizure, (he'd had one himself as a child) but we weren't certain. He didn't have a fever. He hadn't been sick. His blood sugar was checked in the ambulance, all normal.  

 

As we were being transported to Kosair Downtown, the paramedic assured me that he was fighting him, which was a gigantic relief. When we finally arrived at the hospital, his little eyes had opened, but when I screamed, "Lukey! It's mommy, Lukey! It's Mommy" he had no clue who I was.  He stared right through me with no response. 

 

Eventually he came out of the fog, and the first thing I heard him say was, "Where is Ella at?" Those 4 words filled me with all the hope in the world. At about the 2 hour mark, he started coming back to himself.  

 

I said, "Lukey, this morning the fire trucks and ambulances all came to our house, just for you." To which he quickly responded, "Oh, you've gotta be kidding me!" and Mike and I knew our boy was back. 

 

By that night, he was playing like nothing had ever happened before. 

 

The next day he had an EEG, saw a pediatric neurologist, and was diagnosed with Epilepsy based on the results of those tests.   He started on medicine that night. 

 

Mike and I had been told at the ER that one seizure didn't mean you were considered epileptic or would need meds, so we were completely surprised to receive that call. 

 

Mike and I are still processing it all. We have more appointments coming up in the next few weeks. Hopefully we'll get more answers.

 

To say that it's been a hellish week would be an understatement.  Our brains have been overloaded with new information, we are all on high alert, waiting for the next possible seizure. The lack of sleep and mass increase of stress has left me crankier than ever. Our two year old chose this week to cry at every opportunity possible.  All of a sudden I can't read her books right, I can't sing the right songs, she's not happy with her spot at the table, or to take a bath, or that the Spiderman cup isn't clean. When Mike and I have said to Lukey, "It's time for your brain juice buddy." She quickly adds, "No it not! It not brain juice.  It medicine!"  -Can't fool smarty pants Ella! 

 

Speaking of meds, he's a little put off by suddenly needing meds twice a day when as far as he knows, he was never sick! We've tried all the tricks, but still haven't figured out a good way to help him get that down quickly.  I am sure that in time, he'll get it. 

 

All of that to say, I'm resting on this verse, "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28

 

Over the summer, Mike and I were invited to a weekly Bible Study and Sunday dinner at a friend of a friend's house.  When she told me she was a pediatric neurologist, I remember thinking, that's cool, but we won't ever need those services. Turns out, she has been one of the most important people in my life this past week. She got our boy set up with all the appointments that he needed right away and has answered my endless list or questions and concerns. When I've needed things explained over and over, she's loved me every step of the way. I fully believe that God connected us with her at just the right time. (Thank You Anna!) 

 

On Tuesday, when I was too afraid to drop him off at preschool, his teachers welcomed me right into the classroom to be with him the whole entire day. Getting to watch him in that environment was a blessing that I'd not ever have gotten to experience had he not had the seizure. I watched how Kind he was to his friends, how smart he is, how sweet, respectful, joyful, helpful, playful, just an all around AMAZING boy.  It was easily one of the best days of my life, following on the heels on one of our worst.  Kind of like a big beautiful rainbow after a storm.

 

Friends sent flowers, and cards, dropped off gifts and meals.Others babysat. Some just listened to me vent, over an over again.  Friends connected us to other friends who'd been down our similar road.  I still haven't responded to all of the phone calls and text messages yet.  I promise eventually I will.  Baby Ella has zero tolerance for her momma being on the phone with anyone. Not even the neurologist! 

 

On Friday when we went to the library, we stayed a little longer than normal so he could throw rocks into the waterfall. Mike and I have been reading him Piggie and Gerald books, where we each take on the dialogue of a character, something that we've all loved, but haven't ever slowed down long enough to do. 

 

I know that God will use this to make us all better.  To teach us more patience.  To reach out even more to others in their own crisis.  To remind us not to waste our time. To not take anyone or anything for granted.  Each day is such a GIFT.  Even when we think, oh we have healthy children, we are good, life can throw a curveball at any minute. I know this has added new fear to my plate, but in the end, I hope it will help me with my lifelong struggle with FEAR. My own fear has sometimes caused me to hold my kids back.  To try to keep them in a safe little bubble right in my home.  As it turns out, chaos can strike right at your very own kitchen table. Right on your way to church.  I need to remember to let them fly. To enjoy every opportunity that life has to offer them without holding them back because of my fear that something might happen to them. 

 

I started writing this blog with the soul purpose of sharing our struggles and what I've learned about loving others well, even in the chaos. I've been dragging my feet about it, and have felt very uncertain if it should even be done. I'm more scared to share this than anything I've written. I don't want to cause anyone else any harm or stress from reading it. 

 

I will say that with every single trial that comes our way, I feel like God is pressing me to lean on Him and His ways.  To trust in his will and plan. To love unconditionally, to forgive quickly, to reprioritize my time, money, resources in a way that sparks even more LOVE within my home and outside it. To cling even tighter to the the people who love us so well. To swallow my pride and say, "Yes, I am weak.  I am falling apart and would love your help." Letting other people help is such a gift to you as well as to the helpers. 

 

I know that God is using this as a stepping stone to bring us closer to Him and to each other. 

 

 

 

 

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