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.