The best laid plans, post-it note brains, Maggie’s first seizures and the point to the story…

The best laid plans, post-it note brains, Maggie’s first seizures and the point to the story…

Preface

I want to preface this story with the comment that it is long.  It is also mostly sad but informative on what families go through when they find out their child is initially diagnosed with epilepsy.  It is also back story for future posts that I have planned.  To use a Star Wars movie analogy, it is like the Empire Strikes Back movie (my favorite by the way).  It fills in detail about our lives that will help you understand my perspective on living life, the handicapped, the siblings/parents/relatives of the handicapped, caretakers, nurses, doctors, the medical field in general, Lennox Gastaut Syndrome and epilepsy.

Plans

Plans...oh we made plans.  I am a CPA but I swear I’m not a nerd.  If you saw me on the street you would not guess I was a finance guy.  You would guess I was a fat out of work bouncer.  Regardless, my past as a practicing CPA gives you a clue that my mind works like a filing cabinet.  It likes prioritized lists, rows, columns, and to do’s.  I am a pretty linear guy and I like order with a little chaos sprinkled in but mainly I like order.  To me, plans lead to order, a good time and success.  

Post-it note brain

My wife (Kathy, my O'Reilly Girl "OG") is a post-it note brain.  She mainly likes good times in the midst of the chaos surrounding her.  She is awesome, a true multitasker.  I once saw her catch a glass of milk from falling off a table with the bottom of her foot with a kid in each arm.  Super woman!  As Judah Smith once described his way of thinking, Kathy’s brain is full of Post-its.  All the Post-its have scribbles on them and the scribbles are all highlighted in different neon colors.  Her Post-its also have glitter on them.  Anyway, her Post-its also have plans written on them as well.  Mine look like organized color coded pie charts and graphs. 

Plans you make

We planned for the kids college (not well enough, college is way too expensive), we planned for our deaths (wills were drawn up and a trust established to take care of Maggie), we planned for our retirement (met with a broker and financial planner and established goals).  We tried our best to organize what we could but knew you just can’t plan for everything.  Maggie taught us that every day.  We knew we were in it for the long haul with Maggie from the get-go.

Plans can stall

When we were told we were going to have our third kiddo we were really excited.  We couldn't wait for the ultrasound.  We were pros but the third time and were ready to hear "your baby looks great."  But there was silence.  We waited. Dr. Mike looked at the ultrasound and said, "Your baby looks good, but there is one thing I have to point out to you.”  There are two lesions on the brain. They can be nothing and may go away, but they may not.  The lesions can be a sign of other problems.   Kiddos with these lesions can have down syndrome or mental retardation.  The shock of what we were told really didn't set it right away.  He went on to tell us to come back after a couple months to see if the lesions had gone away.   The doctor gave us the option of having some test ran.  We denied these tests because we knew God was in control and we would love and accept all that He gave us.

Waiting...

it can affect plans too. I can remember those two months were filled with questions.  Kathy and I knew we were having a baby regardless of what would occur.  We knew we were blessed with a third child and we would see it through no matter what happened.  We talked about how much we would love our baby regardless.  The two months went by slowly for me.  I remember being so nervous walking in to get the next ultrasound.  I also remember the relief when Dr. Mike told us the lesions were gone.  Relief!  Oh what relief!  When I look back now, it was the first sign God made Maggie a little different.  Kathy was still unsure. She still felt uneasy.

Maggie’s birth was normal and she was beautiful the moment I laid eyes on her.  She was perfect just like her sister Kate.  Life was a little busier with a new baby and two toddlers, but everything was good.  I remember Kathy being worried about milestones and seemed to take Maggie to the doctor more than the other two kids.  I didn’t think anything of it.

Shell shocked

At 14 months old, I got a call right after I got into work at 7:30 AM.  It was Kathy and the news wasn’t good.  Kathy was on her way to Children’s Hospital with Maggie in an emergency squad. Kathy went on to tell me I need to get to Children’s Hospital ASAP.  Maggie had a seizure.  I remember grabbing my coat and running to my car four blocks away.  I recall walking into the emergency room and seeing Maggie hooked up to a bunch of machines.  She was breathing and her heartbeat was being monitored but she was still having the occasional seizure.  Seizures were starting to come in “clusters”. The doctors told us she would need to be put into a medically induced coma if the seizure clusters didn’t stop.  We had to give consent because there was a chance she would stop breathing and her heart could stop.   I just felt this deflation in my whole being.  I felt a hollowness, a hopelessness and empty.  As a man who likes order, I could not control this.  I could not help her immediately.  I could not ease her pain.  I felt defeated as my baby who depends on me for security, comfort and well-being was in front of me in a coma.  I was in shock and rocked on my heels.  All the plans I had meant nothing.  

Here is the selfish part of my thinking.  Of course I was concerned for my daughter.  I could not believe this was my daughter, my life.  I let my mind wander to try to wrap my arms around what was going on.  My linear brain led me to think about my plans…  All the plans we had for the next several years.  They were pretty well laid out plans.  They were thought out, mulled over and calculated.  They were organized and ready for action.  But this?  Wow, this threw them out the window.  I prayed this was a fluke, an anomaly.  I prayed it was a one-time happening.  Boy, was I ever wrong.

No solution, no reason, nothing

After 3 days, we were sent home.  No solution or reason, nothing.  Doctors didn’t know why she had those seizures, but they stopped so they sent us home.  That same night, Maggie started having seizures again.  We watched and waited to see if she fell into the same routine of clusters.  She did, so off we went back to the emergency room.  This time was worse.  She was having clusters that were lasting longer and coming closer together.  The emergency team ended up transporting her to trauma.  Trauma.  Again, they tested her for everything under the sun.  Another medically induced coma but this time they sent her to isolation. Since they still didn’t know why she was seizing, they had to test and to ensure there was no communicable disease that Mags had.  Everything came back clean and clear.  

Christmas Wish & Chinese Food

Finally on the the third day, Christmas Eve, her seizure activity stopped. She wasn’t the same happy baby when she woke up either. We got the diagnosis of epilepsy.  At that time, the doctors explained that when people have seizures for no reason (i.e. fever, genetics, etc), they call it epilepsy.  So they prescribed a pretty heavy hitting anti-seizure medication and sent us home.  Again, it’s Christmas Eve, we had plans for the kids with family.  Dan and Mary Kate are really too young to understand why we are changing all our plans on Christmas.  Our family went on with their plans and Kathy and I found a Chinese restaurant to order Christmas dinner from. Nothing like eating Chinese food on Christmas with your wife and kiddos.

Finding the Right Meds

All the plans we made…flushed. Kathy and I adjusted our lives around having a child with epilepsy. You can’t predict seizures.  Maggie couldn’t tell us if she felt one coming on.  Our baby was basically sedated and we were adjusting to the new normal. Life did not return to “normal.”  We made a new normal.  We met our new neurologist and began the game of finding the meds that worked best for Maggie.  This is an absolutely frustrating experience.  The side effects of many of these drugs are not fun.  We watched Maggie become frustrated, sad, irritable, dopey, sleepy and numb.  Maybe she was happy on the inside but it was heartbreaking to watch your smiley little girl have a sad face on the outside.  Please note (fast forward several years), it took us a long time to find the right med mix for Maggie.  We met a ton of doctors along the way but we finally hit the right mix where she had her personality back consistently.  She still had good and bad days but you could see the happiness in her eyes and in her smile.  Wow, a killer smile I will never forget.

Get to the Point

I guess the moral of this story is you can make all the plans in the world.  They can be the most organized and laid out so well that Stephen Covey would cry reading them.  Those plans really don’t matter.  Plans are great and help but they don’t make a perfect life.  They don’t guarantee order.  They don’t promise a good time either.  As long as you have your family surrounding you and loving you, those are the plans that last.  Those are the plans you remember.  When I get older and my memory fades, I won’t remember doctor’s names and how many days were spent at what hospital.  I will probably even forget all the things Maggie went through with each stay.  What I will remember is that my wife, kids and I endured hardships which would break other families apart.  We endured them together.  They involved good and bad times but we loved each other through it all.  We learned regardless of the circumstance our love for each other endures.  We made one plan we all continue to hold dear to each other.  A plan we won’t break or alter course from.  We planned on loving each other through for our entire lives.  That is something God has taught me along this journey with Mags.  Love endures all and is the best laid plan.