Where am I now?

 February 15, 2023 

Interesting question.  It took me 6 years but I have finally found and joined a grief group.  Yep!  I don't really believe it either, but I did it! I have been searching for the "right" fit but never really took the plunge to join a group.  My church is now hosting a group and I was so excited and very nervous.  This is what I have been waiting for.  A place that I love, where we brought Maggie, and a safe place for me to finally share a part of my grief.

First of all, I don't like to show any type of vulnerability. I actually despise it!  Smiling through the pain or adding humor to lighten things up is my way of coping and dealing with anything uncomfortable.  I know it's probably not healthy but it's me.  

After the initial shock of the horrible loss of our youngest, Maggie, I pushed through the pain and searched for ways to carry on.  I have learned that I am good at hiding in my job.  I don't think this is a bad thing.  I think it is how I put my "Maggie" energy into something positive. Teaching.  I also learned to volunteer in the areas where I could give back to places that helped me in my journey of being the special needs mom to Maggie. I can vocalize what I need now.  I know how to say, "no".  I can also say, "I need..."  

As I am learning, this is all a part of grief.  I am not healed but I am healing.  God is my center and all is possible because of Him.

"Come near to God and he will come near to you. Wash your hands, you sinners, and purify your hearts, you double-minded." James 4:8

Say her name!

 

Let me remind you all of a sweet girl named Maggie.  She had the most loving blue eyes and the sweetest smile.  Maggie never spoke a word but said so much.  She would shuffle into a room and plop on the first person she saw.  She would kiss and sometimes smack that person so hard!  Now we laugh, but those smacks could hurt!  We miss those kisses!  So many kisses.  Mags would grab our faces to get a kiss.  I think she did this because she wanted to look you in the eye.  I think it was her way of saying, "Hey!  I really love you!". 

 Maggie loved swimming!  She didn't care about the danger, she jumped in without a second thought.  Mags kept us on our toes.  Her sister, Kate, would jump in the pool to swim with her even though she didn't want to because she wanted to protect her. Maggie complete in Special Olympics too!  No, not in swimming because she couldn't actually swim. She competed in softball throwing. She actually was the state champion for her age back in 2009. Both Dan and Kate assisted her with her throws.  It was some hard work!  Maggie was stubborn and when she didn't want to hold the ball, she wouldn't!  She got disqualified multiple times😂.

Here is when she got disqualified and was NOT happy!

Some back history...She was born September 16, 2000, after a relatively easy pregnancy.  As many of you may remember, when I was pregnant, I always had a feeling that something was wrong.  She didn't move as much as Dan and Kate did. Maybe I didn't notice her movement as much because I had 2 toddlers to chase after.  Either way, I just knew something was different.  

At our first ultrasound, the doctor found 2 cysts on Maggie's brain.  He was very quiet.  He did a lot of checking and measuring of all the organs.  Nothing else was abnormal but these cysts. He explained what he found and offered options.  We didn't want to hear the options because Scott and I knew that God had given us this baby and she was perfect the way she was.  He scheduled a 2nd ultrasound to see if the cysts would dissipate.  We waited 4 long weeks.  We prayed, worried, and we cried. At the 2nd ultrasound, we sat in silence...the cysts did go away!  The doctor was happy but I still had a feeling though that something just wasn't right.

5 months later, a beautiful little girl was born!  We named her Maggie Grace.  She was beautiful.  She was perfect.  Everything seemed "normal".  Maggie did everything a baby was supposed to do.  At 9 months, I noticed that she started staring off, she wasn't hitting her milestones like she should, and the doctor said "all kids are different and progress at their own pace".  I debated and questioned but the doctor was not concerned.  At 14 months...Maggie had her first Grand Mal seizure.  She had been sick with an ear infection, so when we were at the hospital, it was suggested that was the reason for her seizures.  After 3 longs days in the hospital, we were sent home. We were home for 2 days when she started seizing again. This time, at the hospital, she was put into a medically induced coma to stop the seizing. After another 3 days in the hospital and we were sent home with the diagnosis of epilepsy and medications to control the seizures.

So begins the journey of fighting for our girl.  We fought hard for reasons and answers.  We got multiple opinions.  We traveled to different hospitals for tests and diagnoses. It was hard but our family stuck together.  Dan and Kate experienced all of it.  People forget about how hard it was on them.  Maggie's journey was not hers alone. 

Dan and Kate never complained about long doctor visits, missed social outings, traveling across the state for 2nd opinions.  They stood beside their sister every step of the way.

On November 19, 2016, Maggie left this earth to be with our Heavenly Father.  Dan was visiting Makenna in Cincinnati, Kate was on her way to work, Scott was at the gym...it was a normal Saturday morning.  But it wasn't. We ended up meeting at the hospital.  All of us back together, fighting for Maggie.  She had finally won.  God told her that her job was done on earth.  We were to continue her legacy.  We would continue fighting for others who could not fight.  We would continue to spread love and kindness in Maggie's honor. As a family, we would start a fund that would help siblings of those like Dan and Kate.  

The Magpie Fund was started.  This is a platform that we can help children with disabilities and their siblings.  Every year, we award a family $1000.  They can use the money however they want.  Our hopes are that the money helps them enjoy some of the little things they may be missing out on because of the financial burdens caring for a child with multiple disabilities can be.

I just wanted to write about my girl and my family.  They are all amazing and I am better because of them. I thank God for Scott being the one God sent to live life with and blessing us with 3 beautiful children.

• 1 Corinthians 13:7 (NLT)

  Love never gives up, never loses faith, is always hopeful, and endures through every circumstance.

Naming the loss...

My eyes have grown dim with grief; my whole frame is but a shadow. Job 17:7

It has been more than a year and a half since putting my grief into writing.  This past week I had daily reminders to speak my grief out loud.  I have tried so hard to not speak of my grief but to cover it with love and sunshine.

Since Maggie's passing, I have worked hard to find a "place" to focus or put my "Maggie Energy".  For those who knew Mags, she was a 16-year beauty who never spoke a word, could not take care of herself, and solely relied on others to survive.  Mags had nurses to help her when Scott and I were at work and they made sure she was cared for like she was their own.  She smiled at everyone she came into contact with. Maggie even would go up to strangers and try to sit on them if they were seated.  She accepted everyone unconditionally. November 19, 2016, comes along and our world changed.  In a way, it stopped. 

Though he brings grief, he will show compassion, so great is his unfailing love. Lamentations 3:32

For me, I feel like I have been a shadow trying to do what I know I need to do. After Maggie died, I jumped right into volunteering with Lifeline of Ohio and Nationwide Children's Hospital. I knew I had to speak her name and talk about the journey we were now apart of. My focus changed, instead of focusing on navigating through the special education world, I tried to focus on teaching people about Maggie's love.  I am still trying to spread the love of life she gave. The longer she is gone, the harder it is becoming to go out and volunteer.  It hurts my heart and I can't always emotionally manage it. Speaking about this loss of life becomes...awkward.  People don't want to hear that I lost my youngest child to SUDEP (the sudden, unexpected death of someone with epilepsy). It's a bummer. Unfortunately, it is apart of my story.  It is apart of me and it will always be.  I need to figure out how to revive my love of volunteering around parents and children who are medically fragile like Mags was.

Blessed are those who mourn, for they will be comforted. Matthew 5:4

So why now speak this about my grief again? Is it this quarantine we are all in?  Maybe.  All I know that I try to stay busy. I try to stay busy like a lot of others, to keep my mind and heart off of other things (grief).  I can't conceal my sorrow of Maggie's death now that I can't be in the classroom and a school full of people I love. It has been discouraging and this time has uncovered my rawest wound. The death of my child.

 For the longest time, I couldn't even say she died.  I would say "she passed away".  It was easier for me to hear that, but I could not say the D-word.  So I guess now, for me to write "she died", I am maybe making some progress.

 So here I am naming my loss.  I am speaking the words that I grieve eternally.  Thankfully I have a close group of friends and family that listen to my words and can notice the look on my face and they just know what I am feeling. They know I need to talk about my sadness-about Maggie.  It's not always sadness.  Sometimes I am just plain mad.    I say "THANK YOU".  Thank you for letting me be mad that my sweet Mags is gone.  Thank you for knowing that she too would be graduating from high school. Thank you for sharing pictures when you come across them.  Thank you for wearing our Magpie Fund shirts.  I am thankful for all of you.

My eyes are dim with grief. I call to you, Lord, every day; I spread out my hands to you. Psalms 88:9

We all experience loss.  We should talk about more. Thank you, Jake and Grace Fellowship, for calling me to speak my loss.

Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me. Psalm 23:4

...Joy comes in the morning

April 2018

Psalm 30:5 (NLT)
"Weeping may last through the night, but joy comes in the morning."

What needs to be said?  Do we need to remind people?  Do people remember?  I know the answer for myself.  We have celebrated holidays, birthdays, and regular old days. We will continue to celebrate each day God gives us.  Are we sad? Yep!  We are still sad.  Do we still cry? Yep! We still cry.  Each day comes and we take it on with our face towards the sky, listening for what we should do next. How? Why?

I read my bible nightly and tend to focus on plans that directly deal with grieving, finding joy, or keeping focused on God.  I look forward to it every night.  No matter what I am doing, at 9pm, I stop and go to my room to spend time with God. I need it.  I try so hard to start and end my day with God.  I try to listen.  I ask for strength and guidance.  I ask for help to get through the day.  I started a new plan tonight which sparked my need to write on our blog. The devotional started with Psalm 30:5.  It's to the point.  It was kind of a slap in the face. Truth.

Here is my thought.  Losing Maggie has really sucked the life right out of all of us, but we have all tried to keep our eye on the prize.  God. We know she is with God.  She is whole!  She has no more pain.  No more seizures.  Maggie can sing and dance and eat and drink whatever she wants.   We miss her more than words can ever explain. We continue to live.  We continue to spread love and kindness. We keep going.

This is what I don't understand. Why do some people only focus on the weeping?  When Maggie was living, she took all our effort.  We needed nurses to help us care for her.  Our family was and still is huge.  Nurses, teachers, bus drivers included.  They will always be apart of our family. It's funny how Maggie never spoke a word but said so much.  So many people were touched by her smile.  Those loving eyes.  Her love of dirt, sitting in the grass and swinging on the swing.  Such little things made her smile.   We love to be asked about Maggie.  We love to share stories about her. To us, it helps us grieve.

This is what hurts my heart, People who don't see the gift(s) they have right in front of their faces.  Life is hard.  None of us were given an instructional manual.  So why not be thankful for each day.  Find something good every day. Stop focusing on the negative, what you don't have, what might be taken from you. Look at God's word. God's word explains that Joy will truly come.  I think about how I can help others find joy.   I tell my students to look for the good parts of their day and if it wasn't the best day, then tomorrow will be better. I hope these little ones will find joy each and every day of their lives and they will influence others to do the same.
So, Can people be sad but still find joy?  Yes?  Do you have to work at it?  Yes!  I know some people have more hardships or sorrows than others, but my question is, "what do you do with that sorrow"?  How can you find joy or give joy to others?

I challenge all of you to look up, say "thank you", and face the day with a joyful heart.

Psalm 126:5 (NIV) "Those who sow with tears will reap with songs of joy."

*Please follow the link below to find out how you can continue helping us spread love and sunshine in Maggie's memory to siblings of those living with severe medical and cognitive delays.

www.magpiefund.org

Another lost holiday?

December 2017

Another Christmas comes and goes...how did it feel?  What did you do to honor Mags?  How did the family deal with the 2nd Christmas without her?  Well...holidays aren't as bad as all the other days.

Preparing for an event or a holiday is stressful for any person.  Add a tragedy, like the death of a child, can make it even more taxing.  Trying to go on is tough.  Trying to make sure others around you are happy and bright is really tough.  Trying to make sure you aren't that person at the party who ruins everything with sadness is really hard.  "Faking it" becomes second nature.

Learning to live with the silence is maddening.  I know that seems extreme, but it's honest.  Going to work has become easier.  Being at home...tough!  I look forward to the noise;  To tiny voices, to hugs, and yes, chaos! I love it.  I live for it.  Now that I don't have Maggie to care for day in and day out, is a daily struggle.  I think back to people asking me, "How do you do it?" or " You are so patient."  I would think to myself, "Why do people ask me these questions, or sing my praises of patience?".  Taking care of my kids was the best job ever!  Taking care of Mags was my dream job.  I planned on taking an early retirement to take care of her.  I couldn't wait to spend all day with her.  Yes, her medical and cognitive needs were extensive but wow, the love she gave, was more rewarding than any paycheck.

Taking care of Maggie was second nature.  She became a part of me.  I knew her sounds, shuffles, faces, pinches, and kisses. I knew how to get things done and take care of her at the same time.  Now that she is gone, it is hard to focus. It's hard to get anything done.  Now...I just sit... with my puppies or hang out outside with the chickens. I am learning how to live without her.  Learning how to fill my time.  Learning how to get things done without her. 

Scott and I spend a lot more time together now.  I love that. I love him! But...we are sad.  We talk about how sad we are and feel bad that we are sad.  We talk about how we think about our sweet Mags all the time.  It's so difficult trying not to be sad.  Trying not to bring others down.  It takes more effort than you think.  I thank God for him.  I thank God I have him to talk to about this. 

I recently finished Maggie's Memory/shadow Box for Lifeline of Ohio.  When you walk in the door at Lifeline, there are beautiful frames of people who are donors and or recipients.  They are people's stories and families memories.  It was a goal of mine to get Maggie's done while on Winter break. I finished and I think it's perfect!  I tried to include all the things Maggie loved.  She loved swings, music, her dogs, family, faith, the beach, and water.  She loved monkeys, mulch, dirt, and beads! I plan on creating a quilt square that will represent her love of life too.  This will also become part of Lifeline of Ohio's tribute to organ, tissue and eye donors.

Speaking of Lifeline of Ohio, we received a letter from one of the tissue recipients. It was a beautifully written thank you letter from a woman who could not walk and with Maggie's tissue donation, the woman can now live a more normal life.  Wow!  What a gift!  Not only did Maggie give the gift of sight to two people in New Zealand, but now we know she is helping a woman walk!  We are so thankful to have this information.  Because Maggie was a Tissue, Organ and eye donor, she is continuing to spread her love and sunshine to others. She has truly left a legacy.

So, as another new year approaches, we continue to miss our sweet girl.  We continue to celebrate her love of life daily.  We talk about her.  We are building her memorial fund, The Magpie Fund, for siblings who live with brothers and sisters with severe medical issues and special needs.  We...continue...on.

I lift up my eyes to the mountains— where does my help come from? My help comes from the Lord, the Maker of heaven and earth. 
Psalm 121:1-2

The Why? The Call. The Ask. The Answer.

The Why? The Call. The Ask. The Answer.

The Why?

I saw a meme recently that went as follow:

The definition of life

1.       You are born.

2.       What the heck was that?

3.       You die.

I thought it funny at first but then I thought about it and I didn’t find it as funny.  Call me humorless but it made me think, “What are you doing with your life?”  It forces you to answer the great question “Why am I here?”  I am no philosopher, no wise man and definitely no great famous person. I’m just a regular dude.  My take on the question is only my opinion, no one else’s, just mine.  I am here to love.  I am here to look after others…the weak, the strong, the good and the bad.  I am here to serve those who cannot serve themselves.

I am not here to impress others.  I am not here to die with massive wealth or fame.  I am simply here to love others and love God.  Why post something like this?

The Call

If you buy into my answer above I want you to consider doing something.  It is simple.  It is easy but it does require one thing…action.  Act on the need to love others and do something.  Words are just words but actions speak to the world.  Actions provide proof of your conviction to love others.  They define your character.  Love requires action.

So how can you act?  Get involved in helping others.  Give to a charity.  Volunteer your time.  Help those who need help.

The Ask

I believe in transparency.  I am asking you to give.  Give to any charity you believe in but I would ask you to consider the foundation we established as a memorial to our daughter Maggie.  It is called the Magpie Fund.  The fund provides an annual $1,000 scholarship to siblings of those with special needs.  As the fund grows, the purpose will expand to include purchasing equipment for those with special needs who cannot afford it and other assistance to those who care for handicapped individuals.  See the attached link if you would like to donate to the Magpie Fund.

The Answer

What the heck was that?  Hopefully, you will have an answer to that someday.  I pray the answer is “fulfilling.”  A life full of giving and receiving love.  Call me sappy as I get older but I have found that a smile and a hug go a lot farther than a dollar bill in your pocket.  Please consider the Magpie Fund as an option to start that trend.  If you want to give copy the link below into your address bar and ensure you select Magpie Fund – Maggie Grace Lyons Memorial as your designated donor fund (use the drop down menu on the website to denote the proper fund).

Online donations:

https://donatenow.networkforgood.org/fairfieldcountyfoundation

Designation: Magpie Fund- Maggie Grace Lyons’ Memorial

 

Mail donations to:

Fairfield County Foundation •

162 East Main Street, Lancaster, Ohio 43130

MEMO line-Magpie Fund/Maggie Grace Lyons

 

 

Scattered thoughts as The Day comes closer

November 19, 2016...

I sit here debating what to say as the day I fear looms closer.  November 19, 2016.  I seem frozen.  I don’t know how to feel.  I don’t know what to say to people when they ask how I am.  I can only say good, OK or I am managing.  I want to scream.  I want to cry.  I want to get on my knees and beg.  I want...  I want to see her again.  I want to feel her soft hands.  I want to nuzzle in her soft curly head of hair.  I am lost.

I want to give it all to Jesus but something keeps hold me back from letting it rest in His hands...a selfishness.  I keep picturing where I was when I was told to go to the hospital.  I remember the drive to the hospital and thinking why was I not there when she was found at home.  I picture my wife and daughter fighting to get her to breathe.  I remember walking in the emergency room, seeing my baby and falling to my knees.  I relive that pain.  It is always late at night and I wake to those images.  It eats away at me.  I feel helpless, worthless, insecure and less of a man.  A man who swore to protect his family, to look over them and shelter them from harm.  I feel broken.

I look for guidance to carry me through.  I am stumbling and struggling to keep it together.  I pray to God for relief from the pain and grieving I feel.  It comes and goes.  I cry.  I smile.  I remember.

To say I know what God felt when he gave His only Son to save me from my sins, I have a glimpse but it is not comparable.  I did not want her to go.  He willingly gave His Son to save all.  Then I think that His willing sacrifice saved Maggie.  He save Maggie.  Maggie is with God for eternity...for eternity!  My heart grieves but it also sings.  It sings out to her letting her know how much I love her and miss her.  It sings her praises still.  It sings on how she made me a better man...a better dad...a better person.

I can’t help but think of what she is doing now.  What are you doing in heaven my little girl?  What awesome thoughts are running through your head?  Are you singing?  I know you are smiling!  Are you dancing?  Are you pacing the floor?  I know those eyes are bright!  I wish I could glimpse in on you but I have to wait.  I need to bide my time as my work is not done here.  It will be someday and oh what an awesome day that will be when God calls me home.  I know where I will go.  I know who will be waiting for me.  I know the ear to ear grin that will be on my face.  Death has lost its sting.  I will met you again my beautiful child in the loving arms of our Savior.  What a thought.  What peace it brings.  God is good all day every day.