Our Down syndrome Journey begins…

My journey in the world of special needs began on November 2, 1993.  That is the day that Ryan Monroe Murphy was born in beautiful pre-Katrina Biloxi, Mississippi, my family hometown of over 200 years.  I delivered our third (and last!) child by C-section around 5 p.m. that day and after a brief glimpse of my son in the operating room, I didn’t see him again until the next day (which right away made me suspicious).  That evening, I was told that he was “a little jaundiced” and needed to be placed under the bilirubin lamp so he would stay in the nursery throughout that night…wasn’t I lucky?  I got to get a whole night’s sleep uninterrupted before I began mothering my newborn.  Early the next morning, I began asking, “When will you bring me my baby?”  I quickly realized that the nurses were putting me off.  A nurse finally asked me if my husband was planning on coming to the hospital first thing that morning.  That sent up a red flag that something was wrong with the baby.  Trying to placate me, the nurse offered that the doctor just wanted to talk to us before they brought us the baby.  In an immediate panic, I got on the phone and called my husband to get their as fast as he could.  I then called for both of my sisters to get to the hospital pronto.  I told them that something was wrong and that they wouldn’t tell me what, but I knew that I needed my support system in place right away.

 In short order, my wonderful ob-gyn, Dr. Johnny Mallett, came into my hospital room with at least one nurse (I honestly cannot remember if our pediatrician was there or not) to talk to my husband and I.  I could tell by the look on his face that the news would not be good.  He told us that there were a few clues noticeable in Ryan that led them to believe that he had Down syndrome.   Of course, I had heard of Down syndrome, but in that moment, he could have said that he had Supercalifragilisticexpialidocious disease and it would have made just as much sense to me.  I remember asking, “Exactly what does that mean?”  I don’t remember the precise answer the kind doctor gave, but I do remember the room dissolving into tears-mine, my husband’s and my doctor’s all joining together into what we had no idea would become our departure into this Down syndrome Journey.  It was like the breaking of the champagne bottle on the bow of the ship as we were cast off into a sea that we had not expected to travel.  Just like the Sesame Street writer Emily Pearl Kingley described in Welcome to Holland, we had checked into the hospital expecting to checkout in Newborn Territory (which was somewhat familiar, this being our third child), but instead, we were now in the land of Down syndrome.  So, after drying the tears (which continued to flow with the telling and retelling of the news to each visitor and family member), we were presented with this sleepy little bundle that seemed oblivious to the world around him, had little interest in feeding and we were told to just “take him home and treat him like any other baby.”  ?Huh?  ?What?  He’s *NOT* just another baby….he has DOWN SYNDROME!” we exclaimed!  “No matter, you’ll figure out what to do,” we were told.  Oh, is the magician going to appear at home with us to tell us how to care for this special baby?  NOT!  Oh, I get it.  There is a special doctor that we will see who will tell us what to do.  NOPE!  Oh, okay, then I’ll just get on the Internet and order a book that will tell us all about Down syndrome and THEN we’ll know what we have on our hands.  HA!  Good luck! So…….where do we go from here?    …..to be continued~~~~~~~~~~Sarah Ohr Murphy (Great Grand-daughter of George E. Ohr, the Mad Potter of Biloxi)

Hello world!

This is Sohrmurphy (I wish!…lol)(<= That’s me…I wish!)  Welcome to *my* world!  This is a place for folks to share some time together as well as my way of sharing what’s on my mind with you.  I’d like for you to feel free to share your thoughts here, too!  We’ll discuss all sorts of things, but one purpose of this blog is for those of us who have children or other people in our lives with special needs to share our lives, our experiences, our feelings, our questions and our wisdom with the world and get a little support from folks in similar situations.  Another purpose of this blog is for people who deal with depression and anxiety issues (like me) to share their hills and valleys with others traveling that road.  Maybe you just stumbled upon this blog and have something on your mind that’s bugging you and you need “someone to talk to” or a place to vent, ask for help, advice, etc.  Anything goes here as long as everyone is kind and respectful of each other and the world around us. 

I am (snif, snif) 45 years old, a Mississippi Gulf Coast working mother (jr. high/high school librarian/teacher) of 3 chickadees: two nearly grown girls (Brittany, 20 and Devin, 17) and a boy (Ryan, 14) who also happens to have Down syndrome.  My husband of 25 years (yes, we were high school sweethearts!), Mark, works very hard, long hours for UPS and is as good as gold (actually, even better, IMO).   He’s also a cycling nut (races mountain bikes, a road ride/race now and again, a major Lance Armstrong/Tour de France freak).  All together we 5 take care of a house, a yard, a pool, lots of cars (yikes!  teenage drivers!),  school, jobs and we rebuilt our home after Hurricane Katrina with our own hands with very little outside help.  We generally bob along like corks (maybe more like cocoNUTS…lol) in the ocean waves from day to day, trying to stay afloat and make it some bright and shiny shore where we can lie in the sun all day and live our dream lives of leisure.  Oh!  Snap!  Back to reality:  We’re just a normal (hehe…what a loaded word!) family.  We try to live together in harmony, we have tiffs, we have drama, we laugh (quite a silly bunch, you’ll learn),  we rant and rave, we argue about chores, we hug, we have dreams, we have fears but most importantly we love each other and we count our blessings so that in the end the blessings WILL add up to a higher number than the number of bumps in the road that we call “our life”. 

Even as my son reaches into his teenage years, I still have questions and thoughts I would like to share and answers I need from other people in similiar situations.  Please feel free to kick off your shoes, get comfortable and stay awhile.  Don’t worry about protocol or whether you are “doing this the right way”…just share your stories, your questions, your thoughts, your advice, your observations and I am willing to bet that you will find a new world of friends and a comfortable place to hang your hat!