Support...continued...

June 2017

So many people have come into our lives that are truly unbelievably supportive. From the very beginning, my mom has been the one who came with me to all of Mag's doctor appointments, IEP meetings, etc.  She was there to speak for me when I couldn't. She researched medications, treatments, and even diagnosis.  Mom was the one who brought the Lennox Gastaut Syndrome to the table when the doctors kept saying "we just don't know..." Mag's team agreed to test for LGS and it came to be that Maggie indeed had LGS.

My mom drove up to Cleveland and slept in a teeny tiny hospital room with me while Mags was in for pneumonia. I drove to Cincinnati for the third opinion.  At each place, both of us hoped to keep fighting for the best life Maggie could live. Hospital visits continued, and on that final trip to Children's, she was there with me holding my sweet Maggie's hand, all the while singing to her, even though she had gone to heaven.  I think a little part of both of us died that day with her.

I remember sitting in one of Maggie's first IEP meetings and crying because I was so mad.  I didn't understand what they were talking about but my mom was able to keep it together and talk for me. She knew exactly what I needed to say and what questions I had.  It has been a long road and she still stands by me.  I think she is sad now because her support for me and Mags has changed.

Mom was there to help me choose an urn for Mags.  She still had questions about Mag's autopsy that I didn't necessarily want details about. I still need her.  I need her to be there when I can't keep my frustration in.  Mom and I have to stick together and still give each other support.  We have to make sure we both come out of our hiding places to continuing to live our life the way Mags would have wanted us too. I need her to sit with me on our swing... Just like the 3 of us did so many times before.  I need her to continue to sing the little made up songs she sang to Maggie.  I still need her to come with me when I am uncomfortable to go places by myself. My mom is my person!  She is part of me that keeps me whole and functioning. I get my "spice" from her. She is the reason I press on to help people that may not be able to help themselves.

My mom is my best friend.  She is still my mom, but she is even more now.  She is my warrior.  We will forge on and listen to what God has planned for us next.  It will be hard, but together we can do it.
Thanks mom for always being my person, my voice when I couldn't speak, and the person I most want to swing with and sing silly made-up songs.

No Better Place

No better place…

Been a while…I have felt a lot of ups and downs over the last six months since Maggie passed.  I have had good days where memories come back and put a smile on my face and bad days where the memories suffocate me with grief and make it had to get through the day.  I have found tears come a lot easier to me now-a-days.  I get choked up when I used to feel free and comfortable.  I may even be a little more quiet at times than before.  This grieving process sucks.

There are good memories which make me laugh when I think of Mags and things she used to do.  To hear her laugh with a quick tickle to her leg would always lift me up when I would get home after a hard day at work.  To watch her try to keep her eyes open while listening to me play guitar and sing at the foot of her bed would close my night with a feeling of comfort and strength in providing security to my little girl.  To sit on the swing with her as she sat on my lap and mashed her head into my chin gave me feelings of a loving embrace in Mags own way.  To watch her cuddle with her mom on the love seat at night brought feelings of completeness.  To watch that from across the room was a true joy.  To not be able to watch, see and hear those things is discomforting and unsettling.  I simply feel numb at times.

I have caught myself at work having these random thoughts of Mags which come at awkward times.  I can be in the middle of a phone call/meeting and start thinking of her smile.  I lose my train of thought and try to shake it but just can’t sometimes.  It causes that numb feeling to come back.  That feeling of missing something and not being able to find it.  It is frustrating.

I think I posted it before but it resounds in me time and again, an aching broken heart is a heart that has loved.  It is true but I never thought the ache would be so deep or last so long.  I keep trying to remind myself she is in Heaven.  What an awesome place to be!  Seated with God and in His loving embrace.  The selfish me just wants her back.  I just want a hug, a smile, a laugh.  Seeing a video just isn't enough.

I have been trying to embrace God’s beauty this year.  I’m trying to see the things he provides to us every day we take for granted and don’t regularly appreciate.  Yesterday I saw a beautiful red bird on our front stoop.  His bright red feathers, orange beak and black highlights.  The sun was rising and his colors were lit up by the morning light.  He hopped around and then jumped out of sight.  I wanted him to come back into view so I could admire him more but to no avail he stayed to the side.  It made me think of my Magpie.  Just out of view but not gone.  Just out of reach but still there.  It eased my pain. 

Recently I got to see a dedication ceremony in the honor of my daughter and another beautiful young woman who lost her battle with cancer.  Her nickname was Lu.  What an awesome girl and what a loving family themselves.  The students and teachers at Pickerington North High School sold t-shirts and had fundraisers to save money up for a garden and couples swing for their courtyard.  At the dedication I got to meet Mags' teachers and her fellow classmates.  I have to say I was deeply moved at their sincerity and love for my family as well as Lu's.  A community of people who surrounded us with love yet again and a gesture to show the impact Maggie had on so many lives.  I walked by the courtyard several hours after the dedication and saw a group of high school kids just hanging out on the swing.  I heard their laughs and saw smiles on their faces.  It reminded me of how much Maggie just loved to swing and how happy and content it made her.  What a good memory.  What a loving memory.  It warmed my heart.  That dedication provided me a bright light in my continuing struggle to come to grips with this change and loss.  

My parting thought may be a weird one but it has weighed on my chest and I can't help but share it.  I can easily say I no longer fear the thought of death.  I am saved by my Lord Jesus Christ.  I look at my own pain and suffering but still I can only imagine the pain and suffering he endured to save me.  I can only imagine the loneliness he felt on the cross when he cried out, “My God, My God why have you forsaken Me.”  That utter feeling of loss and loneliness.  The sacrifice He knowingly made.  The sacrifice that saved my Magpie.  The sacrifice which will allow me to see her again in eternity.  I am trying my best to surround myself in God’s grace and mercy to help me fight through these feeling of loss and numbness.  It is hard but when I think about the cross, its meaning and the sacrifice He knowingly made, the pain fades.  To know Mags is with God…no better place.

Support

April 20, 2017

How do I do day to day life?  Support!  I have a wonderful support system. Scott and I are a dynamic duo.  He is my best friend and I could not imagine doing life with anyone other than him. I always knew we would get married.  Even in grade school.  Yes, we went to grade school together and started dating in the 5th grade. I bribed him, with scratch and sniff stickers, to be my boyfriend at a skating party. Of course, he couldn't resist weekly payments of scratch and sniff stickers!  We were destine to be together forever!

After dating on and off for years, Scott got down on one knee, in the parking lot of St. Pius, and proposed.  He arranged it to be as close to the day as possible that we would be an official couple in 8th grade.  8th grade is the year I knew I would marry him.  We got engaged our sophomore year in college.  We didn't want to be married in college so we waited till we graduated.  In 1995, we were married.

Marriage is a beautiful thing.  It is an adventure to say the least.  I am so glad that I am married to my best friend.  We have literally grown up together.  Scott and I were lucky enough to get pregnant on our honeymoon.  Some people may have thought this to be crazy, but not us.  I actually think it was perfect.  Since we had been together so long, it seemed normal.  Dan came along 9 months later. He was the sweetest cone headed baby boy to enter our life.  No one can prepare you for a baby.  You have parties and buy cute stuff but life with a baby is scary.  I remember sitting on the hospital bed crying.  The nurse said we were cleared to take Dan home.  I was like, "No".  I don't know how to take care of a baby!  First, he was a boy.  I didn't know how to take care of a boy.  Scott was there staring at me.  He was totally in control and ready to go home.  He knew what to do even though I was a mess.  I am still in awe of him.  So, out we rolled to our little apartment in Cincinnati.  I remember exhaustion setting the theme of our life at that time.  Dan wasn't a fan of sleeping by himself.  He loved to fall asleep nursing.  He nursed a lot.  I think he nursed more than normal but I didn't have anything to compare it to.  Scott was a trooper during the "nursing" stages of babyhood. Because Dan wanted to eat all the time, my boobs took a beating!  At one time, I think around week 2, I was ready to quick and change to bottle feeding.  Scott knew how important breast feeding was to me and took control.  He called a lactation specialist the hospital recommended.  I refused to talk to them but he did.  He explained what was going on and helped me continue nursing.  Scott even went to the drug store and bought this miracle stuff for my ****.  Lanolin!  Oh my goodness! This was life changing!  Scott was and is amazing!  Talk about support!  This man is the support hero of support.

Mary Kate came along a little less than 2 years later.  I remember Scott and I said, "Let's have another baby", and bam!  9 months later here came our spicy little Mary Kate! I remember the look on Scott's face when he saw that we had a little girl.  He cried when Dan was born, but the look on his face when he met MK was beautiful!  Daddy's little girl!  She was his little girl too.  Mary Kate was a good baby.  She definitely didn't eat as much as Dan and she actually liked to sleep...on her own. This was so opposite of Dan.  Another thing that was different was that she cried more when I held her and would immediately stop when Scott took her.  The excitement on her face when he walked in from work said it all!  MK is sassy and sweet.  She likes to be right all the time like me, but gets mad when we argue back that she isn't always right.  Even though Kate is daddy's little girl, Scott always backs me up.  I remember taking her out of dance class because of her sass and she would talk back to me.  I didn't care how stinking cute she was in her tutu, she was not going to sass me.  Scott supported me 100%.  Even though his heart melted when she ran to him crying because of mean mommy, he always had and continues to have my back.

Fast forward to my pregnancy with Maggie.  The third pregnancy wasn't as big as a deal as the first and even the second for me.  I was so busy with Dan (3) and Mary Kate(1) that I didn't have a lot of time to focus on enjoying my pregnancy with Mags.  I was overjoyed , don't get me wrong, I just didn't have time to sit and enjoy her growing like I was able to with Dan and Kate.  Then came week 18.  The first ultra sound.  Scott, Dan, Kate, and my mom went for the big reveal.  For me, the ultra sound was always the best.  I remember being cramped into the dark room with everyone, feeling excited to see my little baby, then hearing silence from the doctor.  My OB was amazing.  I loved the way he was with my kids and he was a Christian.  This was very important to me because he knew my beliefs.  I was ready for anything God wanted to give me.  That's easier to say than to deal with.  I remember Dr. Mike spending a lot of time around the brain/head.  He came back to it a lot.  He did the normal measuring and checking but kept coming back to brain.  Dr. Mike showed us 2 spots on Mag's brain that weren't supposed to be there.  He said they were cysts.  He also said that everything else looked "normal". He explained that the cyst typically indicated that there was a problem.  Babies with cyst could have a chromosomal disorder, like Down Syndrome or Trisomy 18.  Dr. Mike said there were test we could have done, but Scott and I were adamant that we would love this baby as is.  Mag's was made perfectly, just like God intended.  So, after the initial shock of being told that our baby could have a serious disability, Dr. Mike said that we would come back in 4 weeks to see if the cyst would dissipate.  He suggested that if they dissipated that the baby would be "normal". Without extensive testing, there was no real way to ensure this, but physically, the baby would be ok.

Scott was amazing during the grueling 4 weeks.  His stress and worry was through the roof but he kept it together for me and the kids.  The second ultra sound came and we decided that just him and I would go.  The cysts dissipated!  Yes!  We were overjoyed.  Dr. Mike went through and measured and checked stating everything was ok.  Relief.  That was the first big whammy of stress we had had as parents.  We didn't know that the punches would keep coming.

It's hard to put into words what Scott means to me.  He is so eloquent with words.  We made up a secret code word for our love when we were younger because the word"love" didn't execute how we felt about each other.  I think he smells like Hubba Bubba bubble gum.  Just typing that makes me smile.  There's nothing better than Hubba Bubba.

Sometime life just isn't fair...day to day business must go on...

April 3, 2017

 "To bad, sometimes life just isn't fair..." I have had a hard time coming up with words lately.  Literally, I feel like I can't come up with words to answer questions or ask someone for something.  I am sure it's something to do with grief.  Well, that sucks. Another sucky grief side effect.

There are no words for people who lose someone they love.  You can try to feel the way it may feel but you have no idea how they feel.  Each of us aren't even feeling the same way and personally, I don't want to burden anyone. That's sounds silly, but it's true.  I feel like the first couple weeks after Mags died, all I could do was talk.  Now...I don't want to, I can't, I am just...quiet.  I don't want to make people sad.  I don't want to make people uncomfortable.  For those who know me, I am pretty chatty.  Pretty perky.  I try to add humor to pretty much everything.  Now, I am probably a downer and that sucks.  I don't want to be a downer.

Mary Kate just turned 19.  She is the first one of us to celebrate a birthday since Mags died.  It was awesome to celebrate something happy.  I loved thinking of my time with her growing up, playing and juggling 3 kids all 2 years apart.  I was happy to celebrate my sweet MK. I was a little sad though. There would be no fight to keep Mags from destroying Kate's cake.  No keeping Maggie away from sitting on Kate as she tried to open her gifts. It was, what some may call, a "normal" birthday.  That was not a normal birthday party for us. I never said I was sad because we weren't all present.  Mary Kate actually was the one to say it out loud as a tear ran down her cheek.  I was proud that she said it.  It was her day and for her to say, "I miss Maggie", crushed my heart and made me happy at the same time.  She has words.  I love that she said what's on her mind.

             🍰          

I am apart of a wonderful group of families that rally together to love on 1 specific family annually that has a child battling an life altering illness.  This is the I Run for Jonah.  Jonah lost his life on April 7, 2010 to congenital heart disease. At that time, I taught at Central and a wonderful group of teachers who organized a Run that would raise money for the Hoser family.  It was amazing.  Every year since then, Kim, Jonah's mom,  has chosen a family to raise money for and celebrate. We have had 6 families celebrated so far.  This year will be our seventh. This year, our sweet I Run kiddo, Allie, passed away this past week.  I have no words for the sadness I feel for her family. I know that Allie has no more pain.  I am overjoyed for that, but for the people she leaves behind, the battle has just begun.

 We will support Allie's family.  We will forever be connected. There may be lost words but the love, sadness, and support I give will be forever and strong. This is one reason I love the Hoser family.  For me, Kim was the first person I called when I found out that Maggie had epilepsy and was in the hospital.  She was also one of the first people I called to tell her that Maggie had passed away.  There are people in your life that you may not see on a daily basis, but you will forever be connected to.  I feel like this about my friend Kim.  I don't need to have the right words when I see her.  Sometimes I just hug her and that says everything I need to communicate.

Yesterday, I attended a celebration of donation.  The Ohio State University Wexner Medical Center and Lifeline of Ohio teamed up for their annual Pinwheel Planting.  Over 8500 pinwheels were planted in honor of the transplants that have occurred at The Ohio State University Wexner Medical Center.  I was excited to attend and be apart of the volunteer group for Lifeline of Ohio.  As I mentioned before, Lifeline has been apart of MY Lifeline since Maggie's death. We chose for Maggie to be an organ, tissue and eye donor. One of the best decisions I have ever made. Any way, I didn't think it would be a sad event.  How could someone be sad at a pinwheel planting event?  Well, I was.  As I put the first pinwheel in, in Maggie's honor, the tears started flowing.  I couldn't stop.  I started to get mad.  I wanted my sweet Maggie to be there to help me.  Now, don't get me wrong, for those who knew Mags, would know that she would have been NO help! She would have plopped right down in the middle of that grassy planting area and started pulling those pinwheels out!   She would have been covered in mud.  I have made new friends through Lifeline that I will be connected to forever.  They are an amazing group of people and I love them like family. I feel bad because I was crying.  I felt selfish.  There are no words to say how much I miss my kid.

I do have some words to finish this up.  First, I want people to register to be an organ, donor, and eye donor.  https://lifelineofohio.org/become-a-donor/how-to-register/  It's so important to realize people have the chance to save a life. Even when you can't save the ones you love the most, you can make the decision to save someone else.  Wow!  That's powerful stuff.  I know Mag's legacy lives on through donation and research. Second, I want people to register for the I Run for Jonah race by going to https://runsignup.com/Race/OH/Pickerington/iRunforJonah . Lastly, LOVE!  Love deeply, love often, and try to love everyone.

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.
=
  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...