Now what? The first few months

So here we are at home with the brand new baby.  It seemed so surreal.  What should have been a joyous time in our lives had suddenly turned into what seemed to be a nightmare for us.  We did our best to smile and talk with family and visitors who ooohed and aaahed over the baby while inside we were scared to death; afraid we would do something “wrong” with this child; that we were not doing something that we should be doing for him; that he wouldn’t ever wake up or that he would starve or get sick because he would only suck on his bottle for a few seconds or minutes and then doze back off to sleepy land again.  I remember waking up in the mornings thinking, “Oh, ok, it was just a dream.  Everything’s fine.  No problem,” only to literally have the words DOWN SYNDROME appear in my closed eyes as if it was a billboard lit up in Times Square flashing over and over again to shock me into a new day.  It felt like waking up just a split second before slamming face first into a brick wall.  But there was a baby that needed to be cared for, our baby, our baby boy.  Just like survivors of any trauma do, we had no choice but to sleepwalk through our daily lives.  Before Ryan was born I had been planning to leave the legal profession, where I had been working since I was 18 years old and start my own freelance paralegal business from home.  While still in the hospital after Ryan was born, I remember thinking, “Well, I can’t leave my job now; can’t take the risk of not having steady salary guaranteed; what about medical insurance?” and similar thoughts.  Immediately I felt like I had lost control of my life just when I was trying to break free and do something that I really wanted to do and which I thought would really make a difference in my stress level and enjoyment of life.  In retrospect, I think this was God’s way of making me stay in close contact with my dear friends with whom I worked at the time.  I relied on them heavily for encouragement, moral and practical support.  They were a Godsend.  The daycare where my two daughters attended since their births (6 and 2 years older than Ryan) was also a Godsend.  It was First Baptist Church of Biloxi Early Education Center (no longer in existence).  The Director and the Asst. Director visited us in the hospital with a gift of a day-sized diaper bag already adorned with a FBC-EEC name tag with Ryan’s name written on it.  They assured us right there and then that when Ryan was ready for them, they were ready for him.  Nothing had changed.  They wanted to care for him just like the girls and all the “regular” children (my words, not theirs).  That was a huge deal in my mind…they didn’t reject him/us because he had Downs.  They had never had a child with this kind of disability, but they were there for us and we were so lucky and blessed to have them in our lives.  All through his years there, they worked with us to learn together and figure out what all of us could do to best care for Ryan while treating as much like all the other kids as was possible but yet providing for his special needs without hesitation or question.  This was not our “family” church…we are Catholic, (I’m a convert) but I had been raised a Baptist and Mark and I were married at FBC 11 years before Ryan was born.  Their support was not based on religion or church membership or anything except love and support and the staffs’ kind and caring hearts.

 So after as many weeks as I could afford to take off from work to care for Ryan, I went back to work at the law office and Ryan went to daycare with his sister, the other sister in kindergarten at the public school.  Another life-changing moment at this time happened one afternoon/early evening when my doorbell rang.  A lady was standing there who I had met briefly at my oldest daughter Brittany’s school and she introduced herself as Genny, the mother of one of Brittany’s classmates.  Their teacher (a girl Mark and I had gone to high school with) had told Genny about Ryan having Downs and she just stopped by to re-introduce herself and tell me that they lived right around the corner from us and if we needed anything she would be more than happy to help.  That was the beginning of one of the most important friendships of my life.  More about Genny later. 

 Looking back, at this time in our lives, I was thrown, fell or sank (all apply, in my opinion) into a deep and serious depression.  I had suffered one previous episode of depression after my brother was suddenly killed (he was a fireman who died on the job in 1986 in a fire 7 years before Ryan was born in 1993) and even though my diagnosis at that time was Post-Traumatic Stress Disorder/Reactive Depression  with generalized anxiety disorder, my doctor and I accepted and wrote that off in our minds as being completely understandable under the circumstances and I assumed that after some period of time, reflection, change of job, time off, meds, etc. I would get over that and all would be right with the world once again.  So, things were better on that front (my state of mind) by the time Ryan was born but I don’t think I had really “gotten over” my brother’s death even after 7 years.  I was unhappy in my professional life.  I was over-stressed.  I had severe mommy guilt because I took my two girls to daycare and even though I wanted to be a stay at home mom, I really didn’t think my personality was suited to that role and we needed the second income, so I kept on working.  It was an everyday struggle for me emotionally, but I kind of thought at the time that every other working mom in a stressful job went thru in their emotions what I was going through.  I was really just existing, looking for the “next” right thing to do…change of career was my plan to “happiness” before Ryan was born.  Like I said, that all changed from the actual moment we got the Down syndrome news. 

After discharge from the hospital, I was really disraught but still functioning out of necessity.  Mark was better at being optimistic, but that is his personality.  Always upbeat, always calm, always telling me “Everything will be alright,” but never really having any specific answers when I asked in a teary voice, “But what are we going to do?”  I’m the worrier (ha!  what an understatement!).  That’s my job and I do it oh, so well!  I’m the researcher and the planner and the director of all the “plans”….we must have a plan!  That’s my creedo, so I began to look for resources, books to read, websites, asking doctors a million questions, having my sisters, family and friends quiz anyone they knew who had a child with any kind of disability to find out how they cared for their special child.  It didn’t take too long (thank God for the Internet) before I discovered something called “Early Intervention”…but how early is early?  How old are the kids when they start this kind of activity?  No one could answer that question for me.  All the books I found about Downs in the local libraries were old and they were very grim, black and white pictures and explanations of how to care for “retarded” children, descriptions of institutions that scared the scheisse (pardon my German) out of me.  That right there is enough to plunge a new parent straight into denial, by my way of thinking.  “MY child is NOT retarded!  We can FIX this if I can just find the right book, the right doctor, the right PLAN!”  I wrote hurried letters and sent off subscription and memberhip forms to the National Down Syndrome Society and the National Down Syndrome Congress and any and every other organization that I hoped might have a clue of what to tell us to do.  I began getting magazines, I ordered more up-to-date books (*I’ll add a link here when I get a chance to a list of those resources), I contacted universities and state entities…I ran myself silly/crazy, literally, all the while caring for this new, special baby and working full time and taking care of two little girls, a husband and a home and a law office (by this time I’m Law Office Manager and Certified Legal Assistant…when you have a court date, you do the overtime and you show up to court for your clients…judges and clients don’t care what’s going on in your personal life!)  I don’t know how I put one foot in front of the other during all that time (years).   I just did.  Mark’s life, God love him, pretty much went on as it was before, going to work and having his hobbies on the weekend, etc. while I (by my own design, I admit) “handled” everything else…doctor’s appointments, Brownie meetings, t-ball (he was active in the girls’ sporting activities), all our finances, etc. 

 Meanwhile, after a very scary (and expensive) bout of RSV pneumonia at age 6 weeks (which included a ride in an ambulance 90 miles from Biloxi to New Orleans to Tulane Medical Center’s Pediatric Intensive Care Unit and a 10 day stay there), Ryan continued to grow and thrive.  While at Tulane for the RSV, they discovered that he also had a hole in his heart (common in babies with Downs we learned) known as an Atrial Septal Defect (ASD) and they thoroughly investigated him from head to toe since that was missed at the hospital where he was born.  They recommended no immediate treatment for the ASD, but it required extra vigilence because that made it difficult for his little heart to get the proper amount of oxygen and from time to time he would suddenly turn blue which, of course, created quite a stir and required a fast trip to an emergency room.  Quite stressful, as you can imagine.  Also, as I mentioned, quite expensive.  Thank God my husband’s insurance covered Ryan from birth, but with deductibles and charges “not covered” and all those other lovely excuses insurance companies use to get out of paying bills, we began to rack up a good bit of expense and credit card debt to pay for these hospitals, doctors, medications, breathing machines, trips to New Orleans, etc. while missing more work (and therefore, paychecks) because of all these medical problems. More stress. More worry.

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)