up coming days...

September 2017

The future is uncertain...no one can really tell you how we are going to feel or proceed with life.  This is true for everyone.
Getting ready to celebrate a birthday is normally an exciting time, but what if that person isn't on Earth any longer? Do you still celebrate their life?  Do people still put it on their calendar?  What if we still celebrate?  Birthday cake? Singing? Gifts?  But...Gifts for others.  Gifts that celebrate life.  Singing to bring love, sunshine and happiness to another person that is still here on Earth.  Eating cake, just to eat cake, or maybe smashing that cake because that's what they would have done.

Mag's would have been 17 on September 25th.  Dan, Kate, Scott and I are quietly preparing for this day.  It is unspoken. We don't know what to expect.  For me, I don't know if I should try to go to work.  Should I try to ignore the feelings of sorrow by busying myself with work? Should I stay home and wait...wait for what?  Wait for the day to pass?  Wait for someone to remember that my child, who is no longer on Earth, is having a birthday.  Hide.  Should I hide?  I don't think so.  I think I should remind people that it's Maggie's birthday and we had 16 wonderful years with her.  We should eat cake!  We should even have a cake fight!  We should buy gifts, that she would have loved, and give them to kiddos in the hospital to make them smile.  We should sing because Maggie absolutely loved singing!  She loved cake!  She loved having people around celebrating!

But... right now, I dread the upcoming day.  I am sad.  I am a little mad.  I want to be selfish.  I want people to still buy gifts so we can give them away to others in Maggie's honor and memory.   Maggie still matters!  She will always matter.

I know the world moves on.  People are busy, People go on vacation and may forget to think of Maggie on her birthday.  It hurts my heart because Maggie will always be celebrated in my life. She still matters to all of us. I will continue to buy things that I know would have brought her joy, but I will give them away.  Hoping to bring joy and a little happiness their way like it would have brought her.

One of our goals after Mag's passed away was to find a way to celebrate her memory. Dan and Kate have endured a large amount of sacrifice while growing up with Maggie.  They were and are amazing siblings. It wasn't easy, but they handled their circumstances with grace. Scott and I decided to launch The Magpie Fund with the Fairfield County Foundation. Below explains layout of the fund and how the money will be spent.

"Background and Purpose of the Memorial fund:
Maggie was the youngest of 3 kids. When she was 14 months old she started having seizures and
severe medical issues which took everyone by surprise. There was no family history of epilepsy. Needless to say, this greatly altered the typical family living we enjoyed. It took over 10 years to get answers about Maggie’s medical and learning disabilities. When Maggie was 10, she was diagnosed with Lennox Gastaut Syndrome. Prior to that, she was diagnosed with Autism, Gastro problems, and severe learning disabilities. In addition, Maggie was non-verbal so life was frustrating at times.
Trying to recognize what Maggie needed was challenging and her siblings tried to help figure out what was needed to comfort Maggie. She was in and out of the hospital for weeks at a time and her brother and sister missed out on a lot of typical kid activities. Their lives were different than their friends. They spent an inordinate amount of time in hospitals, sleeping on a pull out beds and eating from cafeterias even on the weekend. They loved their sister dearly and Maggie loved her brother and sister. It was a complete and unconditional love.
Living with Maggie as their sibling opened their eyes to selfless caregiving at an earlier age than most. As most adult’s eyes are opened when they are required to care for their parents, they experienced this as small children with their sister. This gave them a different perspective on life, individuals with special needs and gave them each a desire to take care of those who can’t care for themselves. They grew up learning to accept others who were different. Maggie helped them understand the importance of loving all people. She helped them recognize everyone has value. They included kids no one wanted to play with or others made fun of. They volunteered their free time during school to help in the special needs classrooms because they knew how to be a true friend. They developed lasting relationships and came to understand the deeper meaning of loving and caring for others.
Maggie passed away in November 2016. Her death was completely unexpected. It was devastating. In our devastation, we knew our mission had not ended with Maggie’s death. We must continue helping others. We struggled with how to do this as a portion of our lives were completely dedicated to loving and caring for Maggie. The way we knew how to deal with our grief was and is to spread love and sunshine on others. We want to specifically focus on siblings who have brothers and sisters with special needs and/or have severe medical issues. We know it can be expensive raising a child with special needs and often the siblings lose out on the extras, such as camps, vacations, extracurricular classes, and activities.
Losing Maggie has been extremely difficult but in that loss, we need to remember the impact those children have left on others. It is important we don’t forget their siblings. The sacrifices they made to improve the quality of life for their sister. They are suffering deeply too. They are trying to be strong and support us as parents, continue on with school, their lives and figure out who they are without Maggie. "

Scholarship: $1000
     Write a 500-word essay outlining what it is like living with a sibling with special needs or has severe medical issues. How does your life differ from peers that do not have siblings with special needs/severe medical issues? What could this scholarship help you do something that could help you?

Criteria::
Anyone in Fairfield county of any age (up to 21)
When can you apply:
By April 1st of each year (1-time payout)
What can the scholarship pay for:
College, camps, classes (i.e art, music, etc.) 

Donations can be made directly to https://donatenow.networkforgood.org/fairfieldcountyfoundation-Maggie Lyons

Starting this memorial fund means a lot to Scott and I.  We will never stop celebrating her life and we will probably continue to ask all of you to help us continue this celebration of life.    Let's pull together to celebrate the siblings because sometimes they can be overshadowed.

In addition, I am starting a Facebook Event page, with the intention of getting the word out about the Magpie Fund and helping others come together to spread love and sunshine to others.

 I am going to do everything in my power to make other peoples' days brighter. I will be collecting monkeys to take to the hospital at Christmas time and again in the Spring.  I will be collecting most needed items for Nationwide Children's Hospital.

Eat cake just to eat cake!  Sing loud!  Hug!  Hug!  Hug! Love one another instead of complaining about each other.  Spread a little glitter to add sparkle to someone's day.

Poop...yup...poop

Poo...yup, it happens.



I have debated about writing this one for a while but I feel the need to let people know the funny stuff that happens when raising a kid let alone a kid with disabilities.  I will warn you this will get gross as I explain my thoughts when dealing with this incident.

Like most parents of a handicapped kiddo, you really don’t get a lot of date nights so when they came around you really have to make the most out of it.  Kathy and I had the opportunity to go out with a bunch of old friends from high school and jumped at the opportunity when our neighbor Casey said she would babysit Maggie as well as Dan and Kate.  Casey was an awesome teenager who was one of the few, if not the only, teens not afraid to take care of Maggie and watch her on occasion.  Kathy and I were thrilled.  We got cleaned up, put on our fancy clothes (jeans and a button down) and look forward to a good time throwing back drinks and reminiscing about the glory days.  Well, it goes to say that we both tied one on and were dropped back off at home by friends.

We walk in the house and see Casey watching TV by herself.  What runs through my head…”Awesome!!!  All the kids in bed so we can crash and sleep in!!!”  We pay Casey, send her on her way and head upstairs to check on the kiddos.  We check on Dan…sound asleep.  We check on Kate…too cute, awesome, sound asleep.  We check on Maggie…holy crap…literally.

I have to preface the rest of this story with a statement that Mags had one quality I did not appreciate at all.  She had no aversion to poop.  It didn’t smell bad to her.  She didn’t see it as disgusting.  It was just a lump of clay.  She didn’t mess with it much but if left alone for a while, it became an art project.

I crack open the door to Maggie’s room and it was as if I stuck my nose into a horse’s behind.  The smell alone would have floored a lesser man.  I had cleaned up poo hands and a smear here or there before.  Heck, I had even cleaned up a runny diaper or two.  I admit, I usually just yelled, “OG, this one has your name on it.”  Nothing prepared me for what I was exposed to that night.  I went to flip on the light and as I did my hand was coated with poop from the light switch.  There are things a person can’t “unsee” or “unsmell” but that room was one I wish I could. 

Kathy and I immediately looked for Maggie.  She was on the other side of the bed, curled up like a cute little bean, naked and covered head to toe in poop.  It was as if she had covered herself like a hippo does with mud to stay cool or warm, whichever, but it truly does matter.  My little poop bean…innocent, smelly, disgusting and cute all at the same time.  Once we found her and she was fine we looked around the room and that is when our jaws dropped.  Maggie must have dropped that a-bomb of poos that night as the room was coated.  Many of you would probably prefer me not to go farther but it only takes away from the story.  It was ground into the carpet, smeared on every wall, on the windows, curtains, on her dresser, on her clothes, on all her toys, in her books, on her bookshelf, the mirror, the door, door handle, in the bed, on every pillow, on stuff animals, on hung pictures, on the base boards and even on the inside wall of her closet.  Needless to say, my deserved hangover set in early.  Kathy looked at me with her big doe-eyes and said I’ll take Maggie and you can take the room then scooped up Maggie and ran for her life.

I ventured down stairs and picked up the essentials (cleaning supplies, wash rags and a bucket).  I filled the bucket with warm water and peaked back into the room wishing it would just go away…nope, still there.  I started at 1 AM.  At first I was like a kitten testing water for the first time.  Dab, dab, dab with the corner of the wash rag in the water.  Dab, dab, dab on the wall.  By 2PM I was a watered down poop tornado.  There was no more lightly dabbing.  It was full on poop battle royal.  I was dunking the rag in the bucket, slapping the rag on the wall with a full on karate kid wax on wax off style.  Poo water was flying everywhere and I didn’t care.  I must have looked like the Tasmanian devil with my spasmodic cleaning style.  I scrubbed everything.  If it got in my way, it was getting cleaned.  I moved the furniture and pulled up the carpet.  It couldn’t survive the battle.  Maggie-1 Carpet-0.  I finally finished in a sweaty lump at 4:30AM.  With the room clean, the laundry close to being done and my hangover burnt off, I slinked back to my room and that is when I saw what truly matters…

I saw my beautiful wife embraced with my little clean bean Maggie.  They were sound asleep and spooning in my bed.  I now pause and thank God for that memory.  That is what matters.  The love we share with one another.  The sense of belonging and comfort that love brings.  It can melt away bitterness, rage, anger, and pain.  That memory of walking into my bedroom that night will stick with me until my dying day.  A mother’s true love for her child.

Moral of the story may sound corny but it fits…”poo happens” but it’s what you decide to make out of it.  Maggie made it a night of fun and snuggling with her Mom.  OG made it a night of tender love and caring for her child.  I made it a night of turmoil, sweat, frustration and anger until it all melted away with one glimpse of love.  So when like gives you a poo storm, open up your umbrella and find the one thing that can carry you through anything.  Find love.

 

Parting Thought

So I will never claim to be a bright man and I dare say anyone truly know how someone’s brain works in full.  I do know I believe in God and God answers our pleas and calls for help.  I believe God knows our lives and is active every day in them.  Sometimes we see the outcomes and sometimes we don’t.  I have to share I had the most inspiring dream. 

I dreamt I was asleep in my bed with my wife and I see Maggie walk into our room.  She was a full grown teenager but her gait was different.  She moved with grace and ease.  There was no shuffling of her feet with her head down as usual.  It was as if she had full use of her body like she had not before.  As I woke (in my dream), I looked up at her and saw her beautiful face with a huge smile on it.  She said no words and slid into our bed right between OG and me.  She embraced me and we hugged and snuggled like we would when she was here on Saturday mornings.  There was warmth and comfort.  There was a sense of full health and joy.  There was an immense sense of peace.

I woke up with this swelling in my heart.  I felt her love for me.  I felt her peace and comfort.  I can’t explain it.  It was overwhelming in a good way.  I lost all sense of discomfort with her loss.  I only knew peace and joy.  I don’t know if it was just my mind, a true visit from Maggie’s soul, or a movement from God to ease my pain.  This I believe… when I cried out in pain, a sense of comfort was given.  I asked God to ease the pain in my heart and it was answered.  I see it that way and take comfort in it.

 

A new kind of normal?

We are going on month 9!  It's been 9 months without kisses or being plopped down upon when we least expected it.  It's been 9 months without Maggie's dirty stinky feet, that I loved so much,  in my face when we sit on the couch.  9 months without shopping for cute clothes and shoes for the best-dressed kid in town. ... We are learning to adjust....Learning to live a new kind of normal.

Grief is exhausting. Some stages go by quick and others seem to never end.  I kind of feel like I am stuck in one of the stages. I feel like I am stuck in Pain and Guilt with a dash of reconstruction.  The reconstruction for me is trying to get up each day, plan for my new job (kindergarten teacher :), meeting new people, and organizing Maggie's, Memorial Fund.  I am trying to push the weight of pain off!  I am weak.  I am tired but I ask God for strength.  I can't imagine what I would do without God.  Proverbs14:13

Even in laughter the heart may ache,

and rejoicing may end in grief.

It's hard to think about others when you are fighting an internal battle such as grief. Scott and I need to pour our love into others.  We are working on getting Maggie's Memorial, the Magpie Fund, up and running under the umbrella of the Fairfield County Foundation. We are trying to use our grief and really look at our family unit and apply it to families like ours.  Scott and I want to focus on siblings of those living with kids with disabilities.  Having children is expensive but having a child with extensive medical needs or special needs is really expensive and sometimes these kiddo's brothers and sisters miss out on stuff they really want to do but can't because of the ill/disabled sibling. Our MagPie Fund will be open to these siblings.  We want kids to apply for the Magpie Fund by writing an essay.  Dan and Mary Kate will help read these essays and determine who receives the scholarship fund.  These sibs can use the funds for camps, classes, or other ways to make their lives a little more joyful. Dan and Kate will also sit on the board and help us make decisions on raising funds for the foundation.  

Within my new normal, I have switched schools and grade levels.  As many of you know, I really needed to change things up professionally.  I need to take the time to "protect" myself a little.  I am protecting myself by stepping away from the world of special education. I love the world of special education. I love being an advocate for kids and families. I love the legal side of it.  I love finding resources for families that didn't cost anyone a thing.  I loved fighting the fight.  Maggie was the reason I went into special education.  I never wanted another parent to feel the way I did in Maggie's first (academic) meetings. But, without her, I feel like a car missing a wheel.  I need to repair the missing wheel somehow.

I sat in a training at Lifeline of Ohio, Monday night, that helped us develop our stories about organ, tissue, eye donation. Some of us shared our stories and received feedback.  One of the suggestions I received was to remember to protect myself.  Step back, re-evaluate, and protect my memory of Maggie. Immediately I thought, I love talking about Maggie. This is one of my protection strategies.  Everyone will think I am fine if I talk about my sweet Maggie.  I love talking about the love and sunshine she gave to everyone she met. It puts a huge smile on my face thinking about the joy she gave and continues to give. How could I still apply this to my career though?  How could I continue working in special education?  I think I finally understand.  Stepping away from the world of special education is a way to protect me. 

 I love this time of year, but it has been a rough couple of weeks.  I love the hustle and bustle of getting the kids ready to go back to college and frantically trying to gather paperwork from doctors for school so Mag's could eat/be fed or be taken care of at school. This year, Dan is on a mission trip and won't be back for a week and Mary Kate moves out on Saturday. There is no rushing around to get all of Maggie's medical forms completed and make sure her teachers and nurses are comfortable with the school schedule.  I don't get ANY of it this year, never again. Sounds crazy.  Most people don't like the craziness, but I thrived on it.

One of my favorite things to do is, shop. I loved to shop with Mags.  She never argued with me and didn't mind me holding things up to her to see how it would look.  Not bad for a 16-year-old teenager.  MK has gone out with me a few times but she knows it's hard for me.  I have triggers. I have a hard time seeing people shopping with their children, especially those with disabilities.  I am jealous, angry, and I have to leave.  I struggle seeing parents of special needs children shopping for school stuff.  I try to stay out of certain stores because it's too hard to see families shopping for school clothes and supplies. I don't know, I sound selfish. Normal?  I hope not.

I think I am in between 2 stages of grief. At night I have a reoccurring dream that Mags and I are at my mom's house and I am saving her life.  I save her,  then she dies again.  It happens over and over again. Before I wake up, she dies or I can't find her.  Terrible dream.  I hate it.  I definitely don't want this a part of my new normal. I want good dreams of her.  I want a visit.  All in due time...

 I do know something, that something is, that I miss my girl. I miss her being outside with me.  Digging in the dirt, eating mulch, or laying in the grass with her face in the sun.  I miss sitting in our swing, singing our silly songs or listening to daddy play guitar. I embed her in every part of my day that I can. I keep a framed picture, of my sweet girl, beside my bed, so when I roll over her sweet face and bright eyes. I feel like she is saying, "Get up Mom". It motivates me to get out of bed and start the day. I wear my Maggie necklace every day and take her everywhere I go.  I decorated my kindergarten classroom with sock monkeys and cute colors because of her. Whatever I can do to make me feel like she is still with me, I do. Sad... but a new normal.

Good things happen.  Bad things happen.  Making good of the bad is key.  I think it's pretty cool that we have parents in our community who have had children pass a way and decide to raise money, gather toys and supplies and give to others in need. I think it is absolutely amazing. 

I feel like my mom friends (you know who you are) have our own little society.  We cry, we may even hide but in the end, we can't be silenced.  We may shout, cheer and yes, even fundraise for the good of others.  We will show others that grief can empower good.  God wants us to continue.  Once again, we ask for strength, listen, and move forward.  A new normal is having extra time. I will jump in with both feet and do something good with this thing called grief.

2 Thessalonians 3:13 (NIV)

And as for you, brothers and sisters, never tire of doing what is good.

I hope part of my new normal is having people continue to come and openly talk about my Maggie.  I love it when they send me an old picture of her doing something super cute.  I loved when people who don't know me but when they find out I am Maggie's mom, they tell me how sweet she was and well dressed. I love hearing stories about her.  I love people saying "I never knew her, but I wish I did".

We need people to...Say her name!  Say it loud!  Speak it often!  And whatever you do, please don't ever forget her! Maggie!

July 2017

Changes...

I like change.  Sounds strange but I like it.  I get bored pretty easily so being on the move ALL the time with Maggie was perfect.  I never knew which direction she was headed but I knew it would be pretty unpredictable.

When she was a toddler she could run fast!  I mean, kick off my flip flops, because I had to RUN to catch her.  She would be walking on the sidewalk then bolt into the road.  She would look back at me because she knew she wasn't allowed to do that.

Change brings direction.  It gives a new purpose.  I would get a new diagnosis and run with it.  I would research, take classes, join support groups, and seek 2nd and even 3rd opinions.  I welcomed change as the kids were growing up.  Now as they get older and Maggie has journeyed home, I am not as fond of change.  I know that God is in control and has a plan for me.  I pray for his guidance daily.  I pray for his strength to silence all that is going on around me and in my head.  I focus on my faith.  Please Lord, what is the change I need in my life?

When Maggie started high school, I knew she would put in her 4 years and be done.  Students with disabilities have the opportunity to stay in school until their 22nd birthday, if appropriate.  I never wanted this for Mags.  I knew God gave her to us to raise her and help her have a quality life.  So, to us, that meant she would put in the "average" school time that was required by law. We planned on having Maggie graduate in 4 years then I would quit my job to stay home with her and do life together as an adult with severe disabilities.  This would be a huge change that we were trying to plan for.  It would be a huge change.  I stayed home with my kids until they were all in school full time.  I teach so I was able to be home after school with them and off with them for holidays and summer. It all made sense to us.

Maggie's doctors would tell us at check ups that we should write a book/manual for parents of kids with disabilities. Her doctors liked that we were fully in and ready for anything that was thrown our way.  Scott and I never thought about writing a manual but looking back, I wish I took notes.  For those who know me, my brain is a little unorganized.  Scott is linear.  He is awesome putting words down on a page that flow and make sense.  My brain is not at all like that.  I like to be thrown curve balls and try to do something great with it. Maggie dying is the biggest curve ball of all so far and now I am not really sure what to do with it.

Maggie's death was, is, and will always be devasting. Yes, it's a change that I NEVER planned for.  I kept the idea of SUDEP (Sudden unexpected death in epilepsy) tucked deep in my file cabinet of a brain but tried never to think about it.  Talking to other parents, doctors, support groups, SUDEP never was the topic of discussion. Maggie had so many medical pieces in place, I didn't think SUDEP would be the thing to take her from us.  

Maggie had a lot of pulmonary problems that truly made me nervous.  This was a big reason she had nursing.  For example, Maggie would aspirate when she seized.  Any liquid in her mouth then would go into her lungs, she couldn't cough strong enough to get the fluids out of her lungs, then she would develop pneumonia.  This was the problem we were having more than seizures alone. This was a change that was really difficult for Maggie.  Because of the aspiration and pneumonia, she was not permitted to drink liquids.  She had a feeding tube for all her hydration needs. We got pretty good at watching Mag's really close.  She would steal people's water bottles, pop, anything that was a drink she couldn't have.  Maggie hated that change.  

So looking at change since November 19th....The biggest change to note.  Maggie passed away.  Wait a minute!  I didn't see this coming. No warning, no sickness, no nothing!  As I think I mentioned in some previous blogs, Maggie had a Gastrology appt., Neurology, and a well check all within 3 weeks of each other.  All the docs said she looked good!  Nothing stood out that should alarm us for us to watch for.  Neuro even checked her VNS (Vagal Nerve Stimulator) and it had not recorded any seizures. This was an alarm for me.  Normally, neuro tell me at what time she's having the most seizures, but there was no pattern to report.  I took this a sign.  I didn't know what it meant, but I remember thinking, wow, nothing to report, I wonder what that means.

My favorite day used to be Saturdays.  Scott would go to the gym early, kids were still at college, and I would get morning cuddle time and cartoons with Mags until the nurses should up for their shift. Mary Kate was home for a change because she had to go to work early that day.  I had walked her out as she was leaving as I waited for my coffee.  I think I was eating up Mag's Oatmeal too.  She LOVED oatmeal. But November 19th would change my life.  It would slap me in the face!  Maggie would not wake up, Mary Kate would not go into work, Dan would be forced to come home from college and I would never get my Saturday morning cuddles and cartoons again. Instead, that day Mary Kate had to call 9-1-1 and help me try to revive Maggie. Dan got the call we had discussed but never that would come to reality, and instead of joining us for cuddle time, he rushed to the hospital to see if Mags was ok. She wasn't.  There would be no ICU. There would be no more new diagnosis.  There would be no more shopping with Maggie. BIG CHANGE!  I didn't like this and I still don't.

So what else could I change that I could control?  My job. I have taught special education to high school aged students for the last 10+ years.  I love my kids, but it was a tough year.  It was hard to see her friends in the hall every day.  It was hard not having her not wheel into my classroom at the end of the day with Kat.  So I thought about getting out of education...then...an internal job posting...there was an open position at the kindergarten level.  I would apply. Why not!  I absolutely love that age.  I always planned on teaching tiny humans. This was the time to make a big change.  I am now a kindergarten teacher!  Change that I look forward to. My family and friends knew I needed a career change. They didn't see this coming but are super excited for me. 

I have been asking God for direction and strength.  I know that I have been put on this earth to share my gifts of love and patience for children. I have always clung to the verse in the bible where Jesus tells the disciples to let the children come to him (Matthew 19:14 (NIV)).  I feel that I am going to be able to put some of the energy and excitement that I used to have with Maggie into my new position. I think Mags would want me to keep sharing love and sunshine for all kids.  I am ready.