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

   

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

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

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

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

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

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

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

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

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

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

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

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