Maggie was kind of a big deal!

Maggie was kind of a big deal!  This is a bold statement.  I think as parents, we all think our kids are big deals.  I know all 3 of my kids are.

So why was Maggie a big deal? For one, Maggie had this crazy gene that mutated. When people asked why she had disabilities, I would simply reply, "God said". I always felt this in my heart and soul.  Scientifically, there is a lot of information that goes into the specifics of Mag's disabilities.  To be specific, it was the STXBP1 gene. It's official name is "Syntaxin binding protein 1". This test wasn't offered until we went to Children's Hospital in Cincinnati. We had genetic testing at Nationwide Children's and Cleveland Clinic, but we couldn't afford to pay the hefty $56,000 price tag that came some of these genetics test.  When we were getting Maggie's 3rd opinion at Cincinnati Children's Hospital, they informed us that they would eat the cost of what insurance wouldn't cover.  This also allowed Maggie to become part of their research studies. We were excited because we might get an actual reason for Mag's seizures and delays. Low and behold, Maggie tested positive for a gene mutation.  Since Maggie tested positive, the genetics team suggested Scott and I get tested too.  This would also allow us to find out if Dan and Mary Kate need to be tested. Scott and I tested negative for the gene mutation.  The Genetic counselor explained that at least one parent is normally a carrier.   Neither of us were.  Here is a crazy thing.  Maggie is 1 in 3 in the world, that has been tested and had this gene mutation, autism, Lennox Gastaut Syndrome and parents who were not carriers of this gene change. 1 in 3! Maggie was made exactly the way God intended.  We always knew this.  This was another sign that God is always in control.

It took 14 years, several doctors/specialist, 3 hospitals, and one very specific genetic test to find this mutation. Why did it take so long? Good question.  I think part of the reason it took 14 years to find out that Maggie had a gene mutation, was that we had to travel on the journey God intended.  It was a painful journey and it still is.  I truly believe that God wants me to fight for kids who may not be able to fight for themselves.  Maggie made me a better fighter.  I hope I can continue helping others the way God intended. There are some days, I don't have a lot of energy to fight.  I can barely get out of bed.  I just want to hide under the covers.  But, I get up, get to school, and encourage my students how to be advocates for themselves and others. I hope to spread love and kindness the way Mag's did everyday.

Another way Mag's was a big deal, was because of her donation and continuous contribution to research.  She is still helping research through her donation.  We know that Maggie's rib is being used in a study to make children's safety restraints safer.  Her cornea donation gave 2 men the gift of sight in New Zealand. In a way, Mags is seeing things that we only dream of.  So yes, Maggie was a big deal!

It's been 3 months. 3 months without belly bumps and nose kisses. 3 months without my snuggle buddy. 3 months without my funny teenager to make me laugh as we took pictures using our Snap Chat. 3 months...

Struggling

Struggling.

I been struggling lately.  Struggling to focus at work.  Struggling to be a good dad.  Struggling to be a good husband, friend, man.  Just struggling to keep it together at times.  I am surprised at how this grieving process takes its toll.  Close friends going through the same process said to me the pain really doesn’t go away but you learn to deal with it.  They lost their daughter to a drunk driver.  Their daughter happened to be one of my closest friends and co-maid of honor for my wedding.  We lost Katie five months prior to our wedding.  The loss was devastating to me.  I still miss her dearly.  The memorial for her death was this past weekend.  I tried my best to think of the good times we had over the years and the joy she brought into my life but it became mixed with the thoughts of loss.  It brought back so much pain and reminded me of the loss of my daughter Mags.

The pain screws up my head.  At times I feel I should just get over it and move on.  But then I feel guilty like I am turning my back on them and their memory.  Such a big part of my life is now gone.  The routine I knew so well and embraced has changed.  It is hard to find the new “normal.”  I feel guilty planning things we never had the chance to do in the past.  It just doesn’t seem right.  It makes me really sad.

Our family motto of “it is what it is” hits home.  I can’t bring Kate or Mags back and to ask for that would be so self-indulgent and greedy.  They are with God and experiencing incomprehensible joy every day.  I can only look forward.  I feel like if I dwell in the past and keep reliving the pain of their loss I am just wasting time.  That thought alone makes me feel guilty again.  It is a Catch-22, I feel guilty not thinking about them but I feel trapped in grief when I do.  It is not every day but it happens more frequently than I thought it would. 

I struggle as I can’t think my way out of this one and it truly comes down to control.  I want to control what happens.  I want to control my feelings and I can’t.  That sense of no control over the circumstances is maddening.  Here is what I do know and what I am beginning to see as I live through this.  I need to let go of the control and just feel.  If I want to cry, cry.  If I want to rejoice, I will rejoice.  It is funny how one picture of Mags on my desk can elicit both emotions in the same day hours apart from one another.

I was reading the Good Book in Philippians 4 and came upon verses 6 and 7.  It says, “Don’t worry about anything; instead pray about everything.  Tell God what you need, and thank Him for all He has done.  Then you will experience God’s peace, which exceeds anything we can understand.  His peace will guide your hearts and minds as you live in Christ Jesus.”  I tell Jesus I want peace.  I want the pain to go away.  I thank him for the 16 years I got to spend with Maggie.  I thank him for my beautiful wife and my awesome kids Dan and Kate.  I thank him for being with my children when I can’t be there.  I fully accepted Christ as my savior and can take joy in the fact Mags did the same.  She is with the Creator, my Heavenly Father.  My thoughts tell me God’s answer.  He says, “She is with Me.  She needs no more.  There is no pain.  There is no sickness.  There is only overwhelming love and joy.  She is carved in the palm of my hand.  She is home.” 

To know my daughter and my dear friend Katie are surrounded by His love, fills my heart.  I still get sad and frustrated but a thought keeps entering my mind.  It is a picture of joy.  I keep remembering a time this past summer when I was on the beach playing in the sand with Maggie.   My wife Kathy and kids Dan and Kate were playing in the ocean in front of me.  I couldn’t help but thank God for everything in front of me.  The beautiful daughter that sat in my lap.  The smell of her sandy hair.  The wonderful wife that is well above my pay grade.  The two awesome kids jumping the ocean's waves.  The beautiful ocean.  The soft sand.  The sunshine warming my face.  I can picture that day.  I can practically relive it with tears in my eyes right now.  Then I feel that stir in my heart.  I picture that and believe Maggie is feeling the same love and joy every second of every day until the end of time.  That helps melt away my grief and sadness.  I guess that is one small way I am trying to leave it in God’s hand.

Bitterness.  I think this is the word I want to use. This week I have felt a little bitter.   I have prayed not to be bitter, but it has been a struggle this week.  I have prayed to be filled with God's patience and love.  I am taking time to be quiet.  This is really important for me because it's really hard for me, because my mind is like a race track.  

I started wondering if people think my life is easier, now that Maggie has passed away. I have even wondered if people see Maggie's passing less devastating than a "typical" or healthy child of her age.  This sounds terrible, but I have felt this for the last couple of weeks.  Why?  I don't know.

I started setting goals for myself.  I met one goal 2 weeks in a row.  Get myself out of bed and to work everyday.  Easier said than done, but I did it.  I am bitter because I have to fight to hold it together at work.  I am bitter at myself for crying at work.  I don't want to make people feel uncomfortable around me. I am bitter because I don't want to have to set these mini goals to get through the day.

I think I always battled the feeling of bitterness when doing day to day life with Maggie. For example,  I would become bitter when parents talked about birthday parties, sleepovers, or events their kiddos were invited too.  I hope I never showed this toward anyone, but I was a little bitter.  My feelings were hurt.  Maggie was awesome!  Who wouldn't want to be around her to celebrate or have fun? In Maggie's 16 years, she was invited to 1 birthday party of a classmate.  That was when she was in the 4th grade.  I was overjoyed!

So, what's the point?  Bitterness gets you nowhere.  I am aware of it.  I don't want it to consume me.  I will continue to ask God for guidance, strength and forgiveness. I will continue to try and spread kindness and love to people I encounter on a daily basis.  I will talk about Maggie, look at her pictures, and share my memories with people.
...Peace, love and happiness.

Rambling thoughts on Why versus What?, a family motto and three quotes

 

Rambling thoughts on Why? versus What?, a family motto and three quotes.

So I saw this post the other day on the LGS Facebook page.  It was from a woman named Julie who was celebrating her daughters 16^th birthday.  She was not complaining at all.  She was venting and frustrated as she sees all these other sweet sixteen posts with kids getting their first car and holding up car keys.  She acknowledged her daughter would never own a car or drive.  I don’t think she was mad at others for celebrating their lives.  I think she was saddened and discouraged with her daughter’s inability to live the “normal” life.  I wrote to her and let her know my thoughts.  I hoped she understood the sacrifices she made in the past and present were gifts.  Her daughter was and is appreciative for those gifts.  Julie is the true gift to her daughter.  Her daughter can see, hear and sense the love of her mom.  You don’t need a car, new dress, or a new toy to celebrate that.  This exchange made me think of our struggles with this same issue.  Hopefully, this entry to the blog will help you walk through my thought process to and explain the struggle Julie and most parents of handicapped kids go through.

Why her?

The question Why?  It can be a tough one to tackle.  I look at it two ways.  First, there is the scientific side.  Why did this happen to my child?  Why epilepsy?  Why LGS?  It is a question we have to ask to get help.  It helps us find a diagnosis, the proper meds to control the disorder, develop a treatment plan, etc.  The “why” inherently leads to the what, where, when and how.

Second, there is the question we ask of God.  Why my daughter?  Why us?  Why me?  I struggled with this early on in our journey with Maggie.  It lead me down a path of anger, hatred, despair, and frustration.  I was angry with God.  I told Him to look at what He had done to my beautiful family.  Look at the pain He caused?  She is so little and innocent, where is Your mercy?  Why did You load this weight onto her…onto us?  It was a maddening process with lots of tears.  Through my experience I have come to realize they were fruitless questions.  I gained no solace from them.  

The A-ha Moment

I almost missed the beauty of it all and the path God had chosen for me.  I quit church, I quit God.  I felt like He turned His back on my daughter and me.  I saw her sickness, her seizures, and her put into a medical coma.  I saw regression, sadness and frustration in her eyes.  How dare He do this Mags?  How wrong I was.  There was no lightning bolt moment for me but God spoke to me.  I can’t recall a specific moment or event that happened but I did received my answer from Him.  His answer to all my “why” questions was so simple.  It was a game changer.  It significantly impacted my life.  God said, “Yes, He made her, she is beautiful as she is and He picked me to care for her.  He wanted me to be part of her beautiful life.  A brief life but one full of love, caring, hope and joy.  He picked me.

It is what it is…

There is a sign that hangs in our house that says, “It is what it is.”  It is a creed our family started to live by after several years with Maggie.  Maggie was made the way she was and there was no changing that.  There is true beauty in it.  It says in the book of Genesis 1:27 “God created mankind in His own image, in the image of God He created them; male and female He created them.”  God made Maggie the way she was in His image.  He knew what she would endure and the life she would live.  God also knew the two parents to whom He would lend her.  He picked OG and me.  Out of all the people on God’s green Earth (about 7.5 billion), he picked us.  That’s not a curse.  My friends that is a blessing.  Two in 7.5 billion!  You are almost 43 times more likely to hit the Mega Millions lottery (1 in 175 million chance) than be blessed with a child who needs more help than others.  Looking back on her life, I would easily give up 43 lotteries to live those 16 years again.  I wouldn’t blink once.  So I stopped asking “Why?”

Start quickly with What not Why?

I came to realize asking the “why” questions was silly and selfish.  It lead to a path of despair.  It was better to ask “what” questions.  Not like Little John the rapper who apparently can’t hear well, but much more proactive.  The best one…what can I do?  This took me from being passive and just getting by to active and living life with her.  What can I do to make her life better?  Get active. 

What did Maggie like?  I know Maggie liked to dance with her daddy and spin around.  She loved to do the pretzel.  I know she loved when I came home, immediately hugged and tickled her while singing out loud silly welcome home songs.  I know she loved to hear me play guitar and sing JJ Heller songs when she went to bed.  Your Hands and The Boat Song were favorites.  I know she loved to jump on the trampoline.  I know she loved to play in the dirt.  I know she loved the sun.  I know she loved to swing.  I know she loved to pace on our deck regardless of the weather.  We figured all this out by asking “what” rather than “why” and got busying living life rather than watching it go by.

What can I do to help her live life to her fullest?

Fight.  We fought every day and included her in everything possible.  We didn’t limit her and what she was involved in.  Maggie didn’t have great skill at staying on her feet for a long time and needed assistance but she went snow skiing, tubing, parasailing, rode a jet ski, rode on a scooter, enjoyed sledding, walked the beach, dug in the sand, swam in the ocean, rode roller coasters, jumped in pools, ran in a marathon, won the state Special Olympics in the softball throw for her age group, went down big water slides, went canoeing, and drank a lot of water she shouldn’t have along the way.  Maggie lived life and taught me the joy of taking pleasure in the little things, the small achievements. 

All for one.

If a place/event didn’t adapt to Mags, we left as a family.  No one stayed behind.  We were a unit.  We took the Musketeer’s slogan to heart…all for one and one for all.  As a parent of a handicapped kid you don’t expect special treatment.  You just want the “same” treatment.  You would be amazed at the stares, glaring, and under the breath comments of others which become normal.  I ignored those most of the time but I had a bad day now and then.  There was no need to feel guilty because we couldn’t hurry or rush to put others at ease.  It simply took us more time to check in/out, get in/out of the car/store, eat, dress, shop, etc.  We were a little sloppier at the dinner table or a little louder when quiet was preferred.  We were never ashamed of who we were.  As a parent to a handicapped kid I took rest in the fact my family was strong.  I took pride in my family and how we stood together.  We gave more, bled more, struggled more, but most importantly we loved more.  We gave grace when it was undeserved and provided an example of true love when caring for Maggie in public.  I know there are many other families going through the same issues we went through and God bless them all.  They know what true love is.

Suck It!

The occasional bad day does get you down.  I would be kidding everyone if I said we were always positive and the world around us was great and loving.  We had another motto we followed when faced with a crummy situation with glares, stares, unfair policies and handicap alienation.  The motto was they can “Suck It.”  Yeah, not the most couth saying but it gets to the heart of the matter.  If you don’t accept us, you can “Suck It.”  We will go on without you.  It stinks but it happens, even in church.  Of all places I figured we would find acceptance, the least likely place I thought I would get push back would be in a church.  Mags could get loud.  She liked to verbalize and sing her own songs.  She was nonverbal (couldn’t put words together) but her voice was beautiful.  Her laugh was contagious.  She just didn’t have the tact most of us take for granted.  Mags like to sing when others sung in church.  She was moved by Jesus and loved to lift up her voice to God as much as anyone else.  Her timing was just off a little.  I can remember being asked several times to take her into the baby cry room because she was being loud.  I was shocked, demoralized and horrified my church would have the tenacity to alienate her.  I really couldn’t picture Jesus standing on a mount, stopping his sermon and saying, “Hey, you there.  The one with the unruly child.  You are disturbing those around you.  Please remove yourself to a place more appropriate so others can hear me clearly.”  I picture Jesus saying, “Rejoice in her, accept her celebration, those of you who want to hear more clearly come closer but know her presence is just as important as yours.”  Needless to say, we voiced our dismay but were told that is why they designed and had those rooms.   We left the church after several years of faithful devotion and found another.  One that embraced us fully, asked what we needed, adapted to our needs, changed its way of thinking, and embraced us all.  A big shout out, church clap and Amen to Grace Fellowship and its pursuit of God’s love for all!!!

Moral of this post

If I need to summarize my rambling thoughts above, I guess the following three quotes summarize it best. 

1 - Redd from The Shawshank Redemption said it best, “Get busy living.”  Stop asking why me and start asking what can I do.   

2 – Yoda from Star Wars said, “Try not.  DO or do not.  There is no try.”  You asked the question and got the answer now put your plan in motion and live your life as fully as you can with your kid involved in anything they can do.  Love what they can do and try not to focus on what they can’t do.  Take joy in their small accomplishments.

3 – Teddy Roosevelt said, “Do what you can, with what you have, where you are.”  It can be frustrating with the limitations of what your kid can and can’t do.  But you have the ability to let them experience new things regardless of their abilities. 

Most kiddos have five full senses.  They can see, hear, feel, smell, and taste.  But I think there is a sixth sense.  The sense of love.  Feed that sense the most.  Feed it with experiences with you.  They know when you are near.  They know your voice.  They know your touch.  They know your smell.  Let them experience the world through you and let the world know them.  Then the world may catch up and love others the way you do.

1/27/17

What do I do with my time? My "Maggie" time?

   So, last time I wrote, I talked about how time affected me.  Now that Mags is gone, my use of time has changed.  I have begun to reach out to organizations that Maggie has been involved with or apart of over the last 16 years.  I still need to be connected to these organizations.  What are these? Well, you all know that Nationwide Children's Hospital has been a frequent hangout for our family.  Some may think, "Thank goodness, you don't have to go there anymore.  There are a lot of bad memories there."  Well, true. Here is the thing.  There are still people fighting for there kids.  Fighting for their kid's lives.  I want to help these families.  I will always be Maggie's voice.  I will always be Maggie's mom.  I need to continue sharing Maggie's love through helping others.

 Recently, I reached out to Children's about joining their Faculty as Family group and joining their advisory board. These are a couple of ways that parents can help staff.  I will probably be out of my league, but one of Mag's doctors said it may be a good way for me to continue advocating. So, I am ready to step out of my comfort zone and get involved at a different level.
I signed you to read to kiddos at Children's Hospital.  I am excited to do this too.  I am hoping that I get to ready with kiddos on the epilepsy ward.

Another organization that I signed up to volunteer for is Lifeline of Ohio.  If you don't know, Scott and I chose for Maggie to be a organ, tissue, and eye donor.  What better way to help others.  I am an organ donor. Scott is an organ donor.  We felt that Mag's would insist in organ and tissue donation.  Best decision.  Why?  We received a letter a few weeks back from Lifeline explaining how Maggie's cornea went to 2 men in New Zealand.  They can now see because of Maggie!  Wow! The gift of sight!  We will continue getting updates about how Maggie's donations are giving life.
So, I want to help spread the word that organ and tissue donation saves lives! I want to help educate people about this.  I think the gift of life is amazing! I am so overjoyed to think that Maggie is helping others see, learn, and live.

I feel that I did pretty well this week.  Everyday is hard, but I know that God is with me every step of the way.  He fills me up and leads me.  I start and end my day with Him.  It is part of my daily agenda. I am still, I listen, and I am thankful. I couldn't do this without Him.  So, right now I am focused on using this grief to help others.  This is what I hear from God.  I have faith and I am trying to do what He says.  What can you do?  Are you listening?

Please consider registering as a organ, tissue, and eye donor.  https://lifelineofohio.org/become-a-donor/how-to-register/

Time...

1/20/17

So, it's been a solid 2 months and yes, I am still counting.  I don't want to count but, I am. For 16 years, time controlled me.  I feel a little differently then I did with Dan and MK. I have learned to stop looking at the clock every 2-3 hours but, I moved to counting days. Days gone. 

Time is important to most of us.  We have to be at work at a certain time.  We have deadlines.  We have to meet a friend for lunch at a certain time.  Time, time time. 
I miss time.  I miss our snuggling time.  I miss our shopping time.  I miss our time on the swing listening to your dad play his guitar to us.  I miss time with you.
I don't want to screw up time either. I don't want to be sad.  I don't want to be mad.  I don't want to start crying in the middle of a professional development, a restaurant, or a store. 

Here's what I want.  I want people to love each other.  I want people to look for the good in each day.  I want people to look up, breathe deep, and say "thank you".  I want our educational system to see the importance in growing the whole child and not just the "perfect number". 
Maybe I am unrealistic but, I don't think I am.  I think if I spread love and happiness, then someone in turn will do the same.  Maggie did this.  She loved.  She loved with her eyes.  She loved with her everything she was.  
So, I guess what I need to say is take time to love more, love deep, and love often. Love the time you have and use it wisely.

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.