A Broken Heart is a Heart That Has Loved

A Broken Heart is a Heart That Has Loved

It’s been a while since I posted and the main reason is I have struggled to find words with how I am feeling.  I have good days and bad days.  I have days filled with happy thoughts and days when the world seems to close in on me.  I still have those moments in the middle of a joy filled event when I think of Maggie and feel like I am missing something.

I was recently invited to go see a Cavs game up in Cleveland with some really good people.  The whole nine yards was laid out and it was ridiculous.  A limo picked us up in Columbus, we at dinner at an awesome steakhouse, watched the game from awesome seats, had a quick limo drive back to our cars and a traffic free ride home.  The night was great.  I have to admit, there were two times during the evening when I just felt out of place.  I can’t explain exactly why but I guess I am going to try.

We were in the middle of dinner and I am eating this awesome steak with terrific company.  Then, out of nowhere, it pops in my head, “Maggie is gone.”  I had no trigger point, no picture, no song I heard, no conversation leading me to the thought.  It was just, “Maggie’s gone.”  Then I became a space cadet for a few moments trying to collect myself.  I had a broken heart moment.  What brought this on?  Why now?  What is wrong with me?  I was in the middle of a joy filled event and was floored with a one-two punch to the gut.

We went into the game and during halftime we go into the Cavs team store to look around.  We go up to the second floor for my friend to buy a t-shirt for his son.  This time I have a trigger point.  I see clothes for kids and my mind drifts to Maggie.  I think of how I used to try to find something for the kids when I would travel and bring them each something back to let them know I was thinking of them while I was away.  I stand frozen for a moment remembering Maggie’s little face, her toothy smile, her blue eyes, her soft hands and the smell of her red hair.  Again, I think what is wrong with me?  Why here, why now?

Since then I have been home and praying to God to guide me through this grieving process.  As a guy who likes to control things, I want it to be over.  I want it to have a definitive end.  The truth is, there is no end.  I ask God for guidance and I feel like He keeps telling me to let go and trust in Him.  Let go.  That keeps ringing in my head…let go.  As I think about it, I hear God telling me to let go of the grief, at least the misery side of it.  Let go and see the beauty in what is around me.  Not letting go of the memories but embracing those and seeing the ripple effect of them.  So I started to think about Maggie and her impact on people…on me, on Kathy, on Dan and Mary Kate, on her nurses Tina and Amy, on our families, on her classmates, on her teachers, on our church, on our neighbors.  That is when a smile hits my face. 

A small handicapped non-verbal little girl had a big impact on the world.  She made a mark on people and organizations that will continue.  I think I missed the point those two times when I was up in Cleveland.  I became quiet, distant and remiss.  I didn’t see and take advantage of what Maggie taught me while she was still here.  Take hold of the beauty that surrounds you, enjoy the company of the people with whom you do life, feel those special moments and embrace it.  It reminds me of this poem I recently read which I will share with you.

“Do not stand at my grave and weep”

Do not stand at my grave and weep;
I am not there, I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn rain.
When you awaken in the morning’s hush
I am the swift uplifting rush
Of the quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.

I will freely admit it has been tough without Maggie.  I know it will still be tough in the future.  I know I will struggle and get hit out of the blue with feelings of loss and grief but I will try my best to let go of the pain and embrace the beauty of the moment.  I can take comfort knowing a broken heart is a heart that has loved. 

What is my point of encouragement from this?  Put down your cell phone, take a day off Facebook/Twitter/Instagram, stop taking selfies and invest in the moment.  Look others deeply in their eyes, give them your undivided attention, listen to them, watch a sunrise/sunset with your own eyes, kiss your significant other like you did when you first met, hug someone a little too long, put your face in the air during a strong breeze, feel the sunshine, go for a walk and love on someone.  Just love the fact you are here, you have a purpose, embrace life and enjoy the special moments fully.

Don't forget about Dan and Mary Kate...

   

Dan is the oldest of my kids.  He is currently attending Miami University, finishing up his sophomore year.  He is double majoring in creative writing and IMS (Interactive Media Studies). Dan is apart of a Christian organization called CRU, (formerly Campus Crusade for Christ), where he helps mentor high school students in Oxford. Dan has been coming home more often this year since Maggie passed away.  We are always happy to have him home because it's important to make sure he is being supported with how he is dealing with Maggie's passing too.

      I know there are stages of grief and their explanation of each stage.  I can honestly say that we are all in differently stages at different times.  This can become frustrating to each of us.  We try to talk about how we are all doing and what we are doing to deal with our grief. Sometimes Dan calls or just sends us texts stating that he's having a bad day.  Scott and I also call him and tell him when we are having both good and bad days. We have to work at this "grieving thing". It is not easy and none of us are handling it the same.

     The thing most people didn't ask or know about was the impact a sister like maggie had on our kids.   Dan and Mary Kate didn't have the same experiences other kids had growing up.  Our family had a motto-"All of us or none of us!"   Having a sister who had epilepsy, autism, non-verbal, was fed with a tube, and wasn't potty trained was difficult to go on bike rides, camping, take to amusement parks, and even parades. Going out to eat was a true work out and sometimes we were sweating at the end of the meal.  It's all kind of funny now, but it was not for Dan or MK while they were growing up.

Dan and Mary Kate both volunteered to help Maggie in the Special Olympics for track (softball throw) and bowling. Maggie was mile 1 of the Nationwide Children's Hospital Marathon, the first year they started having mile champions.  Each of took 6+ miles while we pushed Maggie in her running wheelchair.  I was the first leg, followed by Mary Kate, then Scott and last 6+ miles was Dan who brought her to cross the finish line.  Dan and Mary Kate pushed her in the I Run for Jonah each and every year.  The amount of love and pride that Dan and MK have for Maggie was and is amazing.  That's why I hope no one forgets about how hard this loss is on them.

     Mary Kate is my mighty middle child.  She is a little momma.  MK knew how to take care of her sister's medical needs and volunteered to babysit Mags so Scott and I could go out for a dinner or a movie by ourselves once in awhile.  Mary Kate would confront children (and some adults) who would stare at Mags when we would go out and about.  We loved to shop, and Mags got to experience ALL of that! Shopping was one of the only things that we could do that was relatively "easy".  Mary Kate would pick things out for Mags and try them on for her.  She helped Maggie try on shoes.  Maggie Loved shoes!  She knew how to feed her through her G-tube tube in Mag's belly, change her diaper, and put make up on her for school events.  Mary Kate also didn't let Maggie get away with much.  She knew Maggie could learn and never took it easy on her.
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  Mary Kate went off to Columbus College of Art and Design (CCAD) this past fall.  She lives in the dorm too.  Mary Kate is currently majoring in graphic design in advertising.  It has been a good choice for her to live on campus.  Both Dan and Mary Kate needed time to get away from the medical and constant care that Maggie required.  Leaving for college allowed them to blossom.

     Dan and MK are searching for a life without the worry of our sweet Maggie. I know they know that Maggie is with Jesus and she has no more pain, seizures and can eat and drink whatever she wants to now.  Maggie is singing and dancing  and doing all the things she couldn't here on Earth.

    I pray that Dan and MK will have some clarity and focus to live their dreams to the fullest and yet continue to spread love and kindness where ever they go. I hope they want to continue advocating, on some level, for siblings of those like maggie. I know it was hard being Maggie's sibling, but I know with my whole heart and soul that it was meant to be.  Maggie was given to us to teach us lessons of how to live our lives. I tried for 16 years to give Dan and MK the same quality time and I did taking care of Mags. This is something I still worry about.  I want them to know how much I love and appreciate them.

     When other kids were at the pool, out with friends, or just hanging out, Dan and MK were visiting or staying at the hospital with me and Scott. Dan and Kate would stay at the hospital for hours and sometimes days.  They had to eat an unmentionable amount of hospital food (which we acquired a taste to), We slept on a "shelf bed" while at Cleveland clinic -ICU stay of 14 days. They traveled to and from each doctor and specialist we had for Mags across the state of Ohio.  The list goes on and on.

People don't know that Dan and Mary Kate were with me when Maggie (12 months old) dropped into her first Grand Mal seizures.  Dan waited at the door for the squad while MK got me the phone to call 911.  They were 2 and 4 years of age.

     Here is the point.  Maggie had some struggles.  She couldn't take care of herself.  She needed 24/7 attention.  We kept kept her safe, happy, healthy and included her in all we did as a family.  Dan and MK hardly ever complained.  They knew that this was our life and we would make it the best one we could.
 

    The last Saturday with Maggie, Mary Kate was getting ready to leave for work and I went to snuggle with maggie, like we always did, but that morning, Maggie wasn't breathing.  I had to get Mary Kate to call 911 so I could do CPR on Mags.  Dan got a call from me while I was riding in the squad with Mags telling him what was going on and that he needed to get to the hospital because I wasn't sure if she was going to make it this time....

     Dan and Mary Kate are rock stars and they have love that is bursting from the seams.  Please don't forget to ask how they are doing too.  Text, call, write a letter, just say "Hi". Remember the siblings of these kids with multiple special needs.  It's harder than you think.

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/