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.

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.

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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.