On a good note, 24 days until we leave for our trip to Europe!  I’m excited and I can feel the creeping approach of “trip anxiety”, that feeling I get whenever about to or embarking upon a trip.  Have I planned everything well enough to prevent a disaster of missing a plane/train/bus?  Do I know enough about where we are going to get us from point A to point B and survive (much less enjoy) the trip?  Will all 5 of us be able to get along in Europe for 15 days?  I sure hope so.

Just what’s on my mind today…

I had a hard time deciding whether or not all 5 of us should make our annual weekend trip to Barber Motorsports Park in Birmingham, AL (about a 5 hour drive away from home for us), but it’s one of our favorite cities to visit and we’ve always had a wonderful time there.  Our good friend, Josh Hayes (www.joshhayesracing.com) was racing there this weekend and we love to go and cheer him on.  It’s also one of Mark’s (husband) favorite places to ride his mountain bike (Oak Mountain State Park) and he works so hard, has been on vacation this week working on the house and his birthday is coming up, so I really wanted him to have a chance to enjoy this weekend trip which had been planned for a long time.  I thought long and hard about Ryan and I staying home since I have been feeling extra exhausted and stressed, I decided to go on and go, hoping that getting out of town, eating out, etc. would do me some good as well as give us some nice family time together.  As much as I love my sainted husband, he is NOT a communicator, so I got ZERO input from him on the decision and at the last minute (literally) I had him throw some things in a bag for Ryan and I, pick us up at school and off we went. Nothing major went wrong, but I just couldn’t shake the funk that had me firmly in it’s grips.  All the little things seemed to be building up inside and making me more and more anxious, sad and upset.  Ryan and I had a whole day and a half to ourselves while Mark rode his mtn. bike and he and the girls went to the races (I’ll admit, with me feeling conflicted:  on one hand, a little resentful that I was missing the racing fun, but on the otherhand, Ryan and I were doing what we enjoyed,.,visiting the bookstores, eating out, etc. watching movies in the room, etc).  Ryan went swimming and we  explored the area a little bit (I tried to talk Ryan into going to the zoo or a local botanical garden, but he didn’t want to).  We ended up visiting a beautiful new Barnes and Noble bookstore with stunning views overlooking the valley near Cahaba Heights, Riverview, Hoover, and the lovely hills of north Alabama.  Mark and the girls went to the race track and we met up for supper.  Things went downhill from there.  Miscommunications, frustrations, confusion on the plans, combined with the stress of Ryan refusing to go to the races (he doesn’t like loud things and it’s pretty boring for him and he doesn’t like the long walks, etc. but sometimes we can compromise with earplugs and promises of burgers and dvd’s) and his insessient demands to go to the bookstore (even after we already went once)to buy dvd’s or music cd’s, or back to the hotel to swim, or generally whatever strikes him at the moment.  He has no patience or understanding that sometimes the family wants to do other things or how to wait and it becomes a major power struggle and a huge source of family strife for all of us.  Usually I just blow off any plans that I know he won’t enjoy/cooperate easily with and he and I go our way (which always leads to the bookstore and a “chocolate drink” as he calls Starbucks Frappuccinos!)  Especially over the past couple of years I have tried to think of it as my purpose in life to take care of him, to teach  him and to enable my husband and daughters to live their lives doing what they want to do as much as possible while I try to shoulder the majority of what’s necessary to entertaining Ryan and take care of his needs (decisions, haircuts, doctors’ appointments, IEP’s, etc.), even if it means that I miss out on things I would enjoy (like seeing Josh race).  It’s always a balancing act for me,  weighing the amount of difficulty it would take to make Ryan go along with a “plan” or if it would be less stressful on me and everyone else in the family if I just stay home with him or take him to the library or bookstore or park, etc. where he is happiest.  I’m sure that strategy is not perfect and is now becoming the source of some of our problems, but it has worked as a coping mechanism for me for a good while now, relieving me of some of the social pressures that I feel out in public, parties, hockey games, etc. He had been going to play at his Grandmother’s home every Sunday, but I think he is growing out of that because now he usually doesn’t want to go over there anymore.  She still does the same things with him that she has done since he was a toddler…blowing bubbles, taking him to the park, library for books/movies, playing catch with a beach ball in the backyard…pretty boring stuff for a 14 year old).  That was pretty much the only time anyone else “babysat” him for me.  Mark works late and is in the habit of taking almost every Sunday to go ride his mountain bike, sometimes a Saturday golf game or yard work.  He will take Ryan to the library occassionally on Saturdays which gives me 30 minutes to an hour to myself.  The girls have quit watching him  very much and I don’t ask them to, because at 17 and 20, they are blossoming into their own lives and I don’t want them to  strapped down watching their brother too much.  The down side, obviously, is that when there is something that I would like to do, it makes it almost impossible since he makes it quite difficult to have an adult conversation without beintg interrupted and I’m constantly feeling the pressure of all eyes on us whenever we are in public and holding my breath and watching everything I say and he says and does to make sure we act “normal” or “acceptable” in public.  I try to keep him busy and out in public (but mostly in places I feel safe and comfortable, such as Barnes and Noble, where the staff has come to know him and is very patient and kind to us) in an effort to constantly teach him good social skills and independence, such as ordering his own food in restaurants, paying for his purchases, etc.  I stand back and act as his interpreter when folks have a hard time understanding his speech or his “code words” (like “chocolate drink” for frappuccino) and helping him with the money, etc.  Another draw back to this approach is, hard as I try not to feel this way, sometimes (usually when my medication is lowered or if I miss a day or two) I feel resentful that I  have no life outside of work and Ryan.  A lot of that mindset was my choice, however.  I found it more stressful to try to maintain friendships with folks who’s kids are now grown and when they invited me to do things, like go to a movie, I’d have to say no because Ryan wouldn’t sit thru it (unless it was Disney or something) and the issue of finding a “babysitter” was impossible.  It was more painful for me to know of all the plans the “other friends” would make and even though I was invited, I knew that I couldn’t participate because of Ryan.  Please undertand (as I know you other caregivers do) that I love Ryan and my family more than my life itself, but I’m human, too.  Unfortunately, I’m also red-headed and when “my cup runneth over” it usually comes out in a steamy outburst rather than a slow trickle.  Think volcanoes: Vesuvius versus Kilauea (Vesu just blew a big part of Italy literally to hell one day and Kila oozes almost constantly and is much more calm and predictable…and easier for folks to see coming and get out of the way!)

So, after a bit of a meltdown on my part in Birmingham and Ryan being a little more difficult than usual (or maybe the rest of the family seeing that I was having a hard time and them kind of overreacting to the fact that Ryan was not making things any easier for me) I decided that since we had two vehicles up there, Ryan and I would just leave one day early and drive home by ourselves.  No big deal at all as far as the road trip was concerned. Everyone who knows me knows that driving 5 hours on a whim is like going to the mall for most people. So, after venting some of my frustrations with Mark and the girls being upset because they felt Ryan was making me not have fun and leave early we said a teary good bye and Ryan and I hit the road.  After I settled down (and stopped thinking it might be better if somehow my car just careened off a cliff…no worries…I would never actually do anything like that, especially not with my littlest angel with me.) it was smooth sailing all the way home (although I did have to work hard to shut out 5 hours of one School House Rock CD playing over and over again the entire way…oh yeah, and he did throw my favorite sleeping pillow out of the car when we stopped for gas which, of course, I didn’t discover until we were another hour down the road…oh yeah, and he did drop his  whole glass of tea in the Dairy Queen at the same gas stop…and I saw him try to slip a toy he wanted into his pocket and got that away from him before he actually tried to exit the building…that qualifies as a smooth trip, doesn’t it?)  We were home in time for supper.  Easy evening (ony one other tea spill), good to sleep in my own bed (once I could finally get him to go to sleep), easy  morning.  No problems.  Just planned to have an easy Sunday doing laundry and watching tv…no major stressful requirements, hoping to regroup enough to report back to work on Monday morning somewhat ready to face another week.

So, finally (I know, I’m long-winded)…let’s get to the teachable moment.  Of course, as he does every single day of our lives, he was asking repeatedly to go to the bookstore (aka Barnes and Noble). His favorite thing (which we do at least a couple of times a week and once almost every weekend) is to go there and look at the DVD’s and CD’s (of which he has a very extensive collection and has them all memorized), buy one of those and a “chocolate drink” sometimes pausing to play in the children’s department and then he happily moves right on along to his usual habit of asking for hamburger and french fries or to go to his favoriate restaurant next door (O’Charley’s).  We go there so often (both places, actually) that the staff knows him by name and they go out of their way to interact with him, help him make his selections and checkout mostly without me, like I  mentioned before.  I use these outings as sort of a way to work on his burdgeoning indepence and social skills in a rather safe and welcoming environment.  After not finding what I wanted to read last night at home (coincidentally, something about how parents and families of special needs kids cope with the stresses…I did read “Road Map to Holland” by  Jennifer Graf Gronenberg   last night and although I found it interesting, it was geared mostly to parents of much younger kids.) I gave in and said we’d go to the bookstore.  I figured since Ryan had taken his bath all by himself (another skill I have been trying to help him learn to do alone or with minimal help…he is 14, after all) and he had gotten all dressed all by himself, I should let him be my motivation for me to get up and get a shower and not be a lazy slug all day. So we drove out to Barnes and Noble and we did all his usual routine stuff there, even though I really would rather have stayed in bed all day feeling sorry for myself and depressed.    Feeling a little anxious at just getting out  when i was feeling quite bad (emotionally), I took an anti-anxiety pill just to try to simmer me down enough to relax and enjoy the bookstore (also my favorite place to visit and relax).  Good thing I did.  As he sipped on his frap and me on my coffee, we proceeded back to the children’s section. He went to play with the train set at one end while I perused the Special Needs and Parenting sections just on the outside shelf that makes the half-wall of the children’s section.  I could hear Ryan saying “hi” and talking and some little girls chatting with each other and playing only one row of books over from me, yet I was hidden from their view as they were sitting on the floor (besides, I’m so short, only Michael Jordan could have seen me on the other side of the shelf.)  I thought I heard the word “freak” and then a lot of giggles.  My ears perked up and I peeked over the shelf on tippy toes.  That’s when I heard and observed one of the girls tell Ryan, “Go away!  You’re a freak!” and she said it two or three times by the time I could get around the shelf and over there.  At first I just told Ryan to come on and let’s go play someplace else that these girls didn’t want to play.  He then sat down in a chair and said, “I’m just gonna take a rest.”  The chair wasn’t even facing the girls and he was 5 feet away from them.  I stepped away again, not wanting to make a huge scene, but I stayed within earshot and the same girl told him again, “You need to just go away and play someplace else.  You’re freaky.  You’re a freak.”  I came unglued inside and began to shake.  More calmly than I would have ever thought possible, I went back and confronted the one kid specifically (the other two girls were sisters who just happened to be there, not with the mean girl and they fled to their mom who was nearby).  I told her how mean that was to say something so hurtful, etc. and I asked her where her parents were.  she wouldn’t say.  I told her I wanted to talk to whoever she was there with and she refused to go get them, to tell me their names so I could have them paged, etc.  She wouldn’t tell the lady who worked there anything (she also overheard what happened and was right behind me when I confronted the kid). I asked the employee to go page her parents so I could talk to them and I gave kid a good talking to about how being different is not being a “freak” and about being mean to others, etc. and I positioned myself at the entrance to the kids section so she figured out that she was in trouble and I told her I was not leaving until I talked to her mom. She finally gave us her first name, but she said she didn’tknow her mom’s name (yeah, right).  The employees tried to spot a mom, but they said they couldn’t announce the kid’s name, which is understandable and they couldn’t really follow her around, but they did keep an eye on her and one of the employees (the lady who worked in the kids’ section who heard what happened) positioned herself at the front door.  I finally went around asking people in the store if they were there with a child and I found the mom working on her laptop in the cafe.  I told her what happened and she was appalled.  Anyway, to end this long story, the mom basically wanted to yank the kid out of there and beat her butt, but I suggested that maybe if we let Ryan introduce himself to the girl and explained things to her, maybe she would see things in a different light and this could become a positive learning experience for all of us instead of a horrid nightmare.  So, she got her kid and we sat together in the cafe and I explained a little bit about Downs and how Ryan is different but also how he is the same.  We talked about favorite things to do (like both of them love going to Barnes and Noble and both like eating Mac and Cheese in restaurants, etc.) and she really seemed to be a troubled child, to me.  The mom said to me (before the kid came over) that she had been called names at school and that she was probably projecting, which was enlightening, but I suggested that maybe they needed to make sure that they were addressing the fact that she was being bullied at school, etc. and make sure she was getting help to learn proper coping skills.   I told the child that I am a teacher and that she should find a teacher at school that she likes and tell them about whoever is bullying her and that the teacher will help her because teachers really do love their students, etc.  In the end, I gave her a coupon and $5 for a drink from the cafe (so she could try Ryan’s favorite drink) and her mom told her she couldn’t accept it because she was the one that had done something wrong.  I suggested that I really wanted her to understand that people who are “different” are nice, too, so I told her that after she and her mom had talked about all this, maybe she could think of something nice she could do for something else with that $5.  I told her that I would be thinking of her and that I had confidence that she had a good heart and that she could change and become an extra-nice person instead of being mean and that I bet that other kids and people would start being extra-nice to her, too. 

I don’t know where all of this came from, but that’s how it came out, so I pray it was the right way to handle the situation.  We left the poor mother in tears and the girl seemed mostly in fear of just getting in trouble from her mom, but at least she listened to me, even thought she didn’t say much and didn’t have very good manners or tone when she did speak.  The only other time anything like this ever happened to us, I just picked Ryan up and ran out of a McDonad’s play place many years ago and everytime I see a McD’s play place it gives me the creeps, so I didn’t want our favorite hangout to be ruined by what happened.  Ryan didn’t seem to have his feelings hurt; he just knew that something bad had happened because I was upset and the other mother was upset and he kept saying he was sorry.  The mom of the other two little girls that were present works in mental health so she came over and told Ryan he did nothing wrong and talked to him about lunch and how much fun it is to come to the bookstore, etc. so that helped a lot.  She was appalled, too.  Her girls had run to her and told their mom that his girl had been throwing teddy bears at them and they had already moved away from her once, but she followed them and persisted in engaging them before saying all that to Ryan.  So, I guess what I need to take away from this experience is that even kids that “look” normal can have problems, too and like I have told myself on many different occassions:  There are lots of things worse than Down syndrome and I thank God once again for my beautiful boy who has an angel’s heart and can put a smile on even the most hardened face.  Another memorable day in the life of Ryan Murphy.  (Still looking for good reading material on coping skills for parents of special needs children, btw, so please leave any suggestions you might have in the comments section!)

p.s.:  We went home from all this ordeal to find our dog of 14 years staggering around and she died a few hours later last night.  So, today’s topic of research for me is how to explain THAT to a kid with Downs who doesn’t have any concept of death. 

…boy, am I tired. 

Today, boys and girls, I think the topic is stress.  I have no other explanation at the moment for why I feel the need to cry and/or run screaming from the building today.  It’s early in the day, nothing special going on at school like state testing or anything else that should cause undue stress, no crises at home, no one’s sick, no pressing social engagements for me to obsess over in advance (that’s a subject for another day, social anxiety).  Anyone else ever have these days?  (…and no, all you guys out there, it’s NOT PMS!…lol)  Everything seems to be ticking me off today or getting under my skin.  One of my assistant principals is a very positive, upbeat guy.  He provided me with a nice prayer that he says everyday before he starts for work.  If anyone wants a copy, I’ll share.  Just leave me a comment and your email addy and I’ll zap it to you!    In days past, I WOULD run out the door, grabbing for the bottle of Xanax and head home, shut myself up in my room with all the curtains drawn, dark as possible and climb into bed and withdraw from the world.  In an effort to do better than that these days here’s my alternative plan and some of my coping mechanisms for days like today:  I’ve turned off the bright flourescent lights in my office and turned on only my computer monitor, a desk lamp and have a nice scented candle burning.  Hope it works.

Sarah (sohrmurphy) & Ryan (age 14, DS)These pics were taken on Feb. 29, 2008, when my (and my daughter/Ryan’s 2nd sister, Devin, 17/jr.) school (St. Martin High School) hosted the area Special Olympics Basketball Skills competition. …Ah, changes…

I might as well go on and accept it.  The little kid stage is over.  I had an extra year and a half pretending to myself that Ryan is still “little” even though he turned 13 in November 2006.  Now the more I learn about what Ryan should be doing next year in 8th grade, the more I realize that I need to accept that his adult (or at least young adult) stage has begun without me, so I might as well catch up.  With all the stuff I’m reading online about what other kids (see?  there I go again!)…young adults with Downs around Ryan’s age (14-1/2) are doing and what stages come next, I found myself feeling a little down (no pun intended) over the past couple of days.  It could be the stage of the moon, or as my sister says, all the negative ions floating around in the air (lol), or the fact that there are now 8 straight weeks with no holidays until the end of school, or maybe that I’m finally coming to the realization that the time is here for me to change MY ways and start treating Ryan more like an adult and less like a child.  He’s capaple and from time to time in years past we have been through these “spurts”…it’s not really a growing spurt for Ryan.  It’s more of a spurt in my mind or maybe a maturity spurt for Ryan coupled together with my delayed acceptance that it’s time to get going on this next stage.  For the past many months, I have made a conscious effort to just forge ahead, just Ryan and I most of the time, and stop thinking in terms of “I need a babysitter so I can do …{insert limited activity here}.”  Because Ryan enjoys going to Barnes and Noble (B&N) so much (my favorite thing to do), that kind of started it.  I decided instead of coming straight home after school and being bored and lonely with it being just Ryan and I most of the time for 5 or 6 hours until everyone else starts coming home in the evenings, we started going places after school.  Of course, since my social anxiety limits me to the things that I enjoy and am willing to try to do, we started going to B&N at least twice, sometimes more often, a week even if just for a quick visit and a “chocolate drink” (as Ryan calls my favorite frappuccino).  I’ve worked really hard to give him a little independence at B&N.  Since the staff is getting to know us pretty well, I’ve let him go on to the music and dvd department while I wait in line in the cafe.  I can see the front door from there so I know he can’t escape.  A few times he has left that dept. and I’ve panicked, but I’ve usually found him in the bathroom (yes, I’ve had to go in the men’s room more than once to help him and that’s pretty unnerving.  I’ve tried to teach him to checkout by himself with me standing back giving as little help as possible.  He still doesn’t have good money skills, so I usually let him use gift cards, but he can tell the clerk our phone number to get our member discount.  He likes to visit the libraries, but I spend all day in a library, so I try to hold him off of those visits until the weekend when his Dad has been taking him for the past several Saturdays.  I’ve stopped worry and waiting for someone else to be begged into going to Wal Mart for me and Ryan and I have been going after school by ourselves and just doing what we can.  If we can’t get everything we need in one trip or if he is too tired to walk that much or if he’s not cooperating or if I’m stressing out, we just leave.  I’m trying to run more errands and just do what we need to do taking Ryan with me and figuring out ways to cope and trying not to stress over the difficulties and his behavior (I’ll go into all that another day) rather than having the mindset that I can’t do lots of things unless I am able to leave Ryan at home like he is still a little kid.  I’m trying to think of him as my purpose in life now rather than having the mindset that I must be a career woman, housekeeper, laundress, cook, friend, etc.  I’ve given up all friends outside of school and much to my embarrassment and chagrin, I don’t even talk to my best friends on the phone anymore.  In my mind, I couldn’t keep up with all the demands and having friends who invited me to do things that on one hand I enjoyed and wanted to do, but on the other hand those invitations caused me stress and anxiety and then depression because I felt so different from them.  I had no one to care for Ryan while I did things with them, even if it was something as simple as see a movie or go shopping.  Ryan doesn’t like to do those things and it was more of a stressor for me to try to struggle with him and I was always afraid of what he would say or do and how others would react to him.  My strategy for quite a while (not intentional, but after a while I picked up on my own pattern.) was to accept social invitations and promise to be somewhere and then some excuse would arise and I would cancel at the last minute.  I could not face saying no.  After my mother died, I think I used my grief as an excuse to withdraw even further from the rest of the world.  At some point, that’s when I decided that I might as well accept the fact that for the rest of my life it will probably be just Ryan and me most of the time.  Mark and the girls are working, doing things and have their own lives.  It is my life to care for Ryan.  I stopped fighting that and I am trying to come to terms with how I can best care for him and ensure his happiness while trying to find things that I will also get some happiness and satisfaction from that he and I can do together.  I’m not even sure that those of you who do not have a child with a disability will even understand what I am saying here and as of tonight, I can’t explain it any better.  Maybe another day.

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth.

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same.

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I–
I took the one less traveled by,
And that has made all the difference.

                             ~~~~~~~~~Robert Frost, 1916

 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.

 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)