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John Walsh McHugh A Life Worth Celebrating a keepsake from Memoir for Me

We would like to dedicate this book about our son and brother to those who supported us for almost 33 years of Johnny s life Without your love and support a difficult situation would have been unbearable Our son and brother through his tenacity showed us how life is to be lived Our loss on earth is gain for those in heaven We love you John McHugh I will always remember Johnny s smile twinkling blue eyes his tremendous sense of humor his love of Chicago sports especially the Blackhawks and the Bears and his encyclopedic knowledge of movies Mary McHugh Growing up in the shadow of Johnny McHugh was very difficult especially since I was the older sibling But as I watched him grow and take on challenge after challenge my opinion changed and he soon became my hero and best friend His determination and sheer stubbornness provided us all with an example of pure strength Molly McHugh Crawford To JB a lover of life books movies music Thanks for the memories The O Briens For John From a chair he stood tallest in the room Ross Boveri

A wheelchair is not a wheelchair but a superhero s cape to hang onto as you fly down 75th Court David M McCarthy

The McHugh family departs for Ireland 2002 If I ever leave this world alive I ll thank you for the things you did in my life If I ever leave this world alive I ll come back down and sit beside your feet tonight Wherever I am you ll always be More than just a memory If I ever leave this world alive For John Walsh McHugh known to everyone as Johnny everyday was cause for celebration He loved to spend time on the water in Lake Geneva Wisconsin or New Buffalo Michigan He enjoyed sledding with Aunt Tagger and cousins Bridget Colleen and Will He sipped hurricanes with his dad and birthday buddy Uncle Bunker O Brien in the middle of the riotous French Quarter of New Orleans the weekend of the Sugar Bowl He toured Ireland with his parents and sister Molly spending ten days exploring Dublin Wexford Dingle and Galway Johnny also enjoyed family trips to Orlando Tampa Los Angeles San Francisco and Michigan City and South Bend Indiana He enjoyed fishing in the Upper Peninsula of Michigan with Chuck and Chuckie Schauer He had a blast during trips with family and friends to Milwaukee Las Vegas Boston and New York 5

Johnny also loved to stay in watching movies good and bad old and new or reciting the lines of Scarface say hello to my little friend He spent endless hours playing James Bond on his Nintendo 64 with his close group of friends Ross Dave Don and Chuckie He loved to listen to music from U2 to Miles Davis And the young man loved his Guinness It is hard to believe this energetic and spirited young man spent most of life in a wheelchair and had a life expectancy of only 12 or 13 But that is the essence of Johnny It wasn t a wheelchair It was a cape said Therese Tagger O Brien Johnny s aunt and godmother Johnny would be excited and up to do anything It didn t matter if all we were doing was running errands Johnny was diagnosed at age five with Duchenne Muscular Dystrophy a form of muscular dystrophy that primarily only affects males Prior to that he acted much like any normal kid but he was a toe walker and slow to keep up with his toddler peers When he was young he would run to try and catch up but it was like he was running in slow motion said Molly Johnny s older sister by four years We would walk to school together only two blocks away But he would move so slow it drove me bananas I didn t understand what was really happening little did I know how much he was teaching me at that time and every day since Enjoying Lake Geneva WI 1989 6 Johnny 1986

Johnny and Molly 1986 A teacher at Johnny s school St Vincent Ferrer in River Forest Illinois finally spoke up She noticed Johnny had a hard time getting up from the floor and told John and Mary Johnny s parents about her concerns A visit to the family friend and pediatrician Dr John Boblick brought clarity then fear They did some blood work and a muscle biopsy Then Dr Boblick came to the house to give us the news said John It was devastating quite frankly It was 1987 before the time of Web MD and Googling all you canconsume medical advice Mary went to her local library to see if she could find out more about the disease There was nothing but three brochures published by the MDA said Mary And they all mentioned suffocation Thankfully the MDA soon provided more than grim facts about their son s diagnosis John and Mary found specialized doctors clinics treatment plans and support groups through the MDA That was the best thing we ever did said John The MDA also brought a unique weeklong summer camp experience that Johnny learned to love Like most young kids Johnny was first too frightened to go The first year his parents made him a deal They would just visit for the day to check it out 7

The following year Johnny now 9 was still frightened at the prospect of spending a week away from his family and the comforts of home So they made him another deal We said just spend one day up there and if you don t like it we can take you home said John We didn t hear from him that whole week A lot of the kids there were Poor Me kids said Molly who later volunteered at the camp and could watch out for her younger brother They were used to being in the house all the time and their parents didn t treat them like normal kids Johnny felt better about all he accomplished and it pushed him even more like I m not going to have that attitude I m not going to let this beat me This attitude would persist his whole life If I ever leave this world alive I ll take on all the sadness that I left behind If I ever leave this world alive The madness that you feel will soon subside So in a word don t shed a tear I ll be here when it all gets weird If I ever leave this world alive With friends at MDA Camp 1999 8 Ross and Johnny 2005

On Molly s wedding day 2011 Johnny s internal fighting spirit was stoked and fueled by the support of an amazing family A lot of adjustments needed to be made to accommodate Johnny s disability from building a ramp up to the house on 75th Court to rigging a shower together in the Michigan lake house One thing was clear Johnny was excluded from nothing Johnny had a great attitude but it was also my parents said Molly They said We re not going to treat you any differently because you re not And Johnny said I m going to do everything I possibly can And he did Johnny also had a wonderfully supportive group of friends One friend Ross Boveri adds the relationship was mutually beneficial Even though Ross spent much time helping Johnny bridge his mobility gaps he gained a life perspective that many young adults never grasp My parents raised me to help others said Ross But through helping we became friends We had mutual interests in sports and video games It also helped that his dad and sister were huge Packer fans Johnny and Ross met in Kindergarten After Johnny s diagnosis he was held back a year in school 9

He was mad about it at the time said Molly His brain was on track but the rest of him hadn t caught up It turns out repeating the grade was a blessing in disguise because it put him in touch with Ross The two played tee ball every Saturday morning They went through elementary high school and college together At the University of Illinois Ross was hired at Beckwith Hall a dorm on the college campus that housed students with disabilities I thought what a great idea I could get paid to hang out with my best friend said Ross But the relationship clearly wasn t this shallow Being friends with Johnny opened my eyes to the lives of people with disabilities said Ross It has had a long term effect on me Seeing Johnny want to do what everyone else was doing playing tee ball going to all the school activities going away to college getting a job He wasn t fragile and he didn t need to be treated with kid gloves You don t need to treat anyone with disabilities that way A telling story from Aunt Tagger displayed Johnny s belief system even at an early age It was 1988 and Johnny was 6 years old The two had been gardening all day together but the evening turned cold and a surprise frost killed the young plants and erased all their hard work He didn t hesitate he said Aunt Tagger we just have to do it again It s okay He d be in the back of the station wagon on the way to the nursery to pick up more flowers singing Inch by inch row by row what it takes to make my garden grow Johnny with the O Brien Family 2005 10 With Colleen and Bridget O Brien Lake Geneva 1995

Johnny with Fenwick HS friends 2001 In high school Johnny relied on Aunt Tagger for some unconventional volunteer service hours a graduation requirement for Fenwick Johnny and friends Don Dave and Ross arrived at the McHugh s house to babysit Tagger left them for an hour and came back to find Johnny wheeling his chair down 75th to Cortland west to 76th Avenue north to Armitage and back around to 75th Court all busy city streets He was pulling Tagger s daughter Bridget on rollerblades and other daughter Colleen was using one of Johnny s old wheelchairs to tow their brother Will They were all squirting each other with Super Soakers When Tagger returned to pick up her kids she was told by all to leave because they were having too much fun After this Johnny gives me a form and asks me to sign it I said Johnny what work of fiction am I signing now He said We taught your kids Spanish while you were gone So when in doubt just call my name Just before you go insane If I ever leave this world hey I may never leave this world But if I ever leave this world alive 11

Despite a liberal translation of the service hour requirement Johnny was serious about school Living in Elmwood Park just west of Chicago brought its share of snowstorms and inclement weather He never missed one day of high school said his mother Mary Snowstorms in a wheelchair Not one day missed Johnny even asked to delay a major medical procedure to avoid missing school His disease was beginning to make him slump over in his chair compromising his lung capacity The treatment was radical scoliosis surgery involving inserting a metal rod up his spine to keep him upright in his chair The surgery was originally recommended over Christmas break of his freshman year in high school He convinced his parents and medical team to wait until the following summer break so he wouldn t miss class Johnny s schools were supportive partners in his challenges In 2001 his classmates sponsored a Fill Johnny s Shoes fundraiser mimicking the popular MDA Fill the Boot campaign organized by local fire departments Students donated change extra lunch money but it added up quickly In no time the kids of Fenwick High School raised 1 400 to go to MDA The school s president at the time Fr Dick LaPata called Johnny s father who was at work He asked him to attend an assembly later that day but didn t tell him why I almost didn t go said John Thankfully he made it to see his son presented with a large check and 1 100 kids clapping wildly for him There was a school medallion in the middle of the gym floor that had a great deal of respect and superstition around it Only senior class students could touch it During the ceremony Fr LaPata held Johnny s hand in his left hand and with his right bent down and touched the medallion 12 Gaming with cousin Emmett Walsh 1990 With the Walsh cousins 1994

Father and son catching a Cubs game in 1995 The whole assembly erupted They were all clapping for him said John While the school staff and student bodies have always been supportive of Johnny the facilities themselves posed a challenge St Vincent Ferrer had steps leading up to the entrance of the school John and Mary wanted their son there and prepared to cover the cost of a wheelchair lift to ensure he could go When the school found out the pastor at the time Fr Benjamin Russell put their mind at ease He said we ll put one in we ll find the money And they did said John Mobility challenges only got worse as Johnny grew older and attended high school Fenwick was completely inaccessible said Molly At one point Johnny had to leave one building and go to the next building for a class This includes the middle of winter One of the guys would help him out The high school was built in 1929 Many of the doors didn t have ramps certain elevators didn t work or didn t stop at every floor Getting from class to class was very difficult said Ross 13

Johnny learned to navigate these challenges without complaint and even helped a star football player learn to get around the school after breaking his leg His attendance at both schools drew attention to the problem and both schools are now more handicap accessible because of him being there Johnny spent a summer enjoying a marketing internship at Merchandise Mart Properties Inc He and his friend John Baker learned the trials and tribulations of a daily commute on the CTA Green Line After graduating from the University of Illinois at Urbana Champaign Johnny got a job at Park National Bank based in Oak Park Illinois as a Marketing Assistant He met some amazing and supportive people there but was let go after U S Bank took over the small communitybased Park National Bank He was proud of the work he did at both establishments and made his mark on many people at each company She says I m okay I m alright Though you have gone from my life You said that it would Now everything should be all right Johnny knew he was beating all the odds and birthdays became epic celebrations complete with printed t shirts and mugs For his 25th he had t shirts made advertising his Quarter Centennial Birthday Celebration on the front and This Is How We Roll on the back with the list of all the bar stops made that night His 30th was renamed McHugh a Palooza complete with I m a Man I m 30 themed cups and shirts 14 Celebrating a Quarter Century of Life 2007 McHugh a Palooza 2012

The McHugh family visiting Cleveland Ohio 2009 Doctors marveled at how Johnny broke all life expectancy predictions Dr Franco Laghi who John first thought was actually Irish a Dr Frank O Lagey was Johnny s MD pulmonary specialist at Loyola University Medical Center He told us Whatever you re doing keep doing it said John Sadly Johnny succumbed to complications from the disease in May of 2015 The day before his family made the tough decision to take Johnny off life support over 100 people visited the hospital to say goodbye One of those visitors was Father Joe Ekpo Johnny s religion teacher from Fenwick He administered the sacrament of the Anointing of the Sick and gave Johnny a blessing traditionally reserved for Catholic Bishops He said he did that because of the strong faith Johnny always had said Tagger What a compliment Doctors warned them it could be days weeks or even months of waiting once they decided to take him off life support He died 10 minutes later on May 16th 2015 a week shy of his 33rd birthday I prayed for a peaceful death for Johnny And we got it said Mary 15

Even though Johnny is gone he lives on in the memories of family and friends He also lives on in two young men one from Bayview Garde and another from Aurora Illinois Johnny had agreed to be an organ donor when he got his State ID He said I have muscular dystrophy I don t know what they can take but they can take it said John His disease didn t prevent him from donating two healthy corneas and a heart valve These days letters from thankful organ recipients playing Johnny s favorite band Flogging Molly or watching his favorite niece and goddaughter Teagan toddle around the house help heal the pain of loss God certainly had a plan giving us Teagan first said Mary Their strong faith and the passage of time will hopefully continue to bring peace to the McHugh Walsh Crawford O Brien and Boveri families as well as to all of those lucky happy few that were able to call Johnny a friend She says I m okay I m alright Though you have gone from my life You said that it would Now everything should be all right Yeah should be alright Flogging Molly

As painful as the emotions are underneath them at their very roots is affirmation Affirmation that we few we happy few who were blessed to not only know Johnny but to merely meet him witnessed a man of such innate human goodness that no sentence written by Shakespeare could ever adequately capture his spirit language is a vessel that is too small for that David M McCarthy