I Could not Do What You are Doing . --- Are you kidding?? Neither can I!!!

A certain number of people have told me that off and on, and it is a kindness and a kind compliment, and I certainly take it as such... but let me say this. Take me back before September 1996 before Ben was born. Give me a run down of those next 18 years with Ben (and God only knows what lies ahead of us yet here in 2014), tell me this will be my future life... and I would have run away faster than Jonah ran from God. And likely some sea creature would have swallowed me up and spit me out on some foreign shores to face my problems :)

There is NO way, absolutely NO WAY apart from having Ben and his health and mental issues thrust upon me ignorantly, that you would have ever gotten me to say that "Oh, sure, I can handle this. Not a problem."

Ben was born after (get this!!) 50+ hours of labor. I went into labor on September 6th at 2 pm, a Friday afternoon. I remember that first pang distinctly. Kids with Down's tend to be slightly early, and he was 36 weeks and a little more. Ben was born at 1 am on September 9th. It was not grueling labor, it was all very uneven, did not go anywhere and because of his heart condition, he was a c-section Baby.

His apgars were 4 and then 6 at 5 minutes. He immediately was put on oxygen, whisked into the NICU and stayed there for (I am losing count of these details) I think 23 days. He was of course not eating because with his cleft lip and palate he could form no suction by which to take in nourishment, so he had a naso-gastric tube inserted through his nose into his stomach, and it stayed there till he was 8 months old when we had a permanent G tube placed surgically (that is another story). I need to back up on that. The naso- gastric tube was taped to the side of his face. He often pulled it out and I learned to be a pro at inserting it  into his stomach and listening with a stethoscope at his stomach for the woosh when I pushed air in :) Also the latex tube hardens with the stomach acid, so it needs to be replaced regularly. Ben was syringe fed around the clock every 2-3 hours for the first 3 months of his life. (Yes, I slept in 1 hour shifts, then up to pump breast milk, fortify it with formula, pump it into Ben, then sleep... etc.)  How did I do it? I HAVE NO IDEA.

I had 3 older kids ages 18 months, 3 years, and 6 years old. That time until 3 months when Ben had his first open heart surgery is rather foggy. And somehow I still got up in the morning, dealt with the other kids, drove to appointments.

The week Ben got home from the hospital my daughter Kirsten who was 3 decided to have a major allergic reaction to something, and no matter what we did to treat her it would not go away. She was speckled in little red dots from head to toe, the worst rash I have ever seen, and we spent weeks trying to clear her up, so in addition to Ben going to Cardiology, new born visits, gastroenterology, sick fever visits, nutrition visits, endocrinology visits, ear nose throat, plastic surgeon (for cleft stuff) as well as orthodontics for his cleft palate... I had to cart a 3 year old who looked like she had a bad case of measles to dermatology.  Kirsten eventually cleared up by being put in all cotton, special diet, no contact with any surface that was not 100% natural cotton etc, and life settled down with her, which was good because Ben continued to be an interesting challenge. He had a heart monitor at night (my request so I could sleep soundly unless it beeped or UNTIL the alarm woke me up for the next feeding) He developed some interesting food intolerances resulting in intestinal bleedings and ended up tolerating only baby formulas that were broken down to their constituent amino acid forms. Did you know that amino acids really really stink?? I mean baby formula does not smell that great but amino acids are awful. Who cares, it all goes in the tube and down in his stomach, he never has to taste it, so no harm done.  The tube from his nose down was another interesting challenge because it left his sphincter muscle  always open from the stomach to the esophagus (we paid for that issue 2 years later with a fundoplication procedure) and he quickly developed acid reflux and refluxed himself into a couple of lying down aspiration pneumonias as well as a bright red lower esophagus . We paid dearly for that ng tube later, and always wondered why nobody talked to us about placing a permanent G tube in his stomach much earlier to lessen his reflux issues. But never mind, it was so busy, probably everyone thought someone else had talked to me about this issue.

Ben's morning meds were such a dose that quite frankly he was full just with the mini syringes of digoxin, lasix, aldactone, propulsid, ... I forget the others, but at one point I remember counting 15 little syringes I had to pull up for him in the morning. And quite often they came back the way they were sent down as Ben must have been so nauseated by the meds he could not keep it down. And after meds filling him up somewhat, he was not able to keep down any formula I syringed into him via the ng tube either. Those were precarious days, always on the brink of hospital admission, and quite often in the hospital.

I honestly don't know how we got him to 3 months and open heart surgery. I think back and I remember meds, I remember being busy, I don't remember the other kids much, though they were there, but I don't remember being stressed either. It was more of a , OK if this is what we have to do. This is what we will do. And I was hyper conscious that a calm me meant  calm kids and calm baby. So lots of laughs. NO expectations of any day, other than the prayer for survival for all.

From the time Ben was discharged from NICU till he went for his first open heart surgery, we went to cardiology at least weekly, many days daily. Ben was born with a heart with no walls, and the valves (tricuspid and mitral valves) were fused together into one dysfunctional valve. So he basically had one big heart chamber which simultaneously squeezed blood in all directions to his body at the same time, rather than our ordered normal hearts which differentiate oxygenated blood from blood returning to the heart that needs to go to the lungs to become oxygenated. HIs heart was highly inefficient. I think it is a small miracle that any person can live with a heart like that.

As a result, he was rather bluish and his oxygen saturations were poor all the time. The surgeons always waited till 3 months if they could, to operate on these hearts because the outcomes would be better if the heart was bigger. And so, also with Ben, in spite of his fluid gain in all his limbs (He looked fat but it was all water) and his poor functioning, no energy to swallow, hardly any energy to cry, he got to wait for 3 months for this all important surgery.

During that time he was mostly tired from this poorly functioning heart which took all his energies away, and he mostly slept, and if he were awake and had the energy he mostly cried because of his red esophagus that really hurt him rather badly. Any time we needed an echocardiogram to make sure his heart was not getting worse (and that was about once a week) he had to be sedated because he would scream so badly with the cold gel and the transponder  moving around on his chest that they could not see anything on the echo, otherwise. My older kids were as home in the cardiology waiting room as they were at home in our living room, it seemed. And the kind people in the office always played movies for the older kids so the procedures were not too odious for them to get through.

Open heart surgery, what can I say. It was Ben's first surgery, because he was too frail to have any of the other things he needed done, until the heart was stable. We had already had our  daughter Kirsten in a minor operation before, ditto for our son Nikolas, and I had had 4 c-sections, so we were veterans... or so we thought.

But no. Open heart surgery is above and beyond. Come the day before. Do tons of blood work, talk to a million specialists. Be told all the terrible things that can go wrong. Get canceled either because your kid is too this or that, and reschedule, or get canceled and rescheduled because a kid is born with hypo-plastic left heart the night before-- a syndrome that cannot wait, while my kid could wait.

When you finally surrender your kid to open heart surgery, you wait an eternity. I think we turned Ben over at 6 am, and I think he came out around 2 pm... or at least, we were allowed to see him again at 2 pm-- in the cardio-thoracic intensive care unit, where he is on a ventilator, hooked up with what seems like a million leads, and completely unresponsive to anyone. It is a rather heart wrenching sight to see a kid in that condition, let alone your own baby, but you get used to it.  And you hang there for another 5-10 days before your kid finally goes home, but back up. Cardio-thoracic intensive care was at that point at CS Mott, one big room or two, where there was a nurse for every 2 patients, unless your kid needed more intensive care. Result--- any time any kid was in crisis, the whole unit shut down and all parents were kicked out, so I spent a lot of time not allowed to see my kid even when he was doing OK. (I am not saying this resentfully, believe me, I felt for the parents who had a kid who was struggling,but the arrangement was difficult to live with.)

The first big step is getting your kid off the ventilator and letting him breathe on his own. The first try with Ben did not work, and they had to put him back on the ventilator.  It is stressful to witness this and be so helpless. You just sit and pray. Those first 3 days after open heart surgery are tenuous, you want to fast forward, but of course you can't and time moves like frozen molasses. I want to add here that at the time I was not an experienced hospital parent as I became later. I did not realize how long it takes for a specialist to show up, or how normal it is for things ordered to show up HOURS after they were asked for. It took me all of school year 1996-1997 fall and spring to develop my hospital patience and having my hospital bag ready at all times, where you bring all sorts of things to entertain yourself while your kid is on a ventilator: computer, book (and yes, I was one of the few people with a big clunky cell phone back then. Big enough to serve, also as an instrument of self defense, if needed :). This is when I got back in to the habit of knitting, a hobby I had dropped in 1990 when Nikolas was born, and ever since Nick there had been a baby to lay claim to my lap, so no knitting had really been possible. Well, with Ben in ICU on a vent, and mamma in a rocker next to his bed, why not knit? So I took up sock knitting because they are small and portable, and I have been knitting socks ever since.

Well, we survived (both Ben and me and the whole family) open heart surgery, and I won't bore everyone with the details, but we came home  from the hospital just before Christmas 1996, and Ben screamed and screamed day in and day out, and did not settle down and all through Christmas 1996 into the new year we were at the cardiologist's or in the ER or in the hospital with this kiddo who just did not seem to come out of that surgery as well as every one had thought he ought. He had pericarditis (inflammation of the area around the heart) and then as that settled, the fevers started spiking and the diagnosis was endocarditis (and infection inside the heart) and then pneumonia from all of the above and who knows what else, and ended up with a second open heart surgery to repair a heart which was damaged because of the infection.

In short, complications, the sort only 5% coming out from that procedure tend to have. But Ben with his cleft lip and palate, kidney reflux, GI reflux, chronic ear infections, gastro intestinal intolerances, etc seemed to go with the 5% always, never with the 95% who fared well. The joke became 'what else can be wrong with this kid?" ... a morbid joke, to be sure, but you either laugh or cry, and my solution is that laughter is the preferred path.

Ben and I became best friends with a number of doctors, from cardiology to pediatrics to GI to urology to the nutritionist, and had the fun experience of having the nurses fight over who got Ben, when he was re admitted and re admitted and re admitted onto the floors both at CS Mott's and also at our local Bronson hospital in Kalamazoo.

I have fond memories of sitting up late in hospital rooms, chatting with our favorite nurses, having doctors save Ben's room for last on the round and then sitting down to chat about everything and anything and of course about Ben late into the night, sometimes past midnight, if the doc was there anyways on call all night. I remember being in the hospital for Easter, Mother's Day, Thanksgiving, Christmas, and having different people popping in with flowers, chocolate, gifts, jokes (and I am not talking family and friends here, though they did it too, I am talking doctors and nurses).

One of the best experiences of having a really sick kid like what was the camaraderie, the sense of being part of a team, where every last person was doing his or her best to help Ben survive (and survival was 4-5 times really the issue--- would he get through the surgery, or get over the infection?) I remember living off of crackers and little else one time because I forgot my wallet at home. Somehow a doctor found out and he insisted on giving me a $  50 bill and refused repayment... just so I could get something to eat until my family would show up again.  -- At one point at CS Mott's I was so run down and sick myself, Ben's one doctor took a look at me and prescribed an antibiotic. I had no time to go off campus and home to see my own doctor 100 miles away.  -- I have had people clear broom closets and set up a cot so I could sleep there. One nurse let me sleep next to be in the ICU for a couple of nights because I had nowhere to go (a no no). I have also, of course, slept many a night in  a Ronald McDonald House when they had an available room, and whenever I go through McDonald's to this day, if I have cash, I do a donation to the  Ronald McDonald house.

I met many wonderful parents in crisis while in the hospital with Ben. During my longest stint in 1998 in the spring, a dear lady and I were like best friends all that spring as her daughter was in forever as well, and we would roll our babies in strollers out into the indoor play land in the middle of the cardio floor and sit and chat for hours while our babies slept in their strollers.

Apart from making Ben well, and supporting him again and again as he sported an infection or needed yet another procedure (he had over 20 procedures his first 2 years), the hospitals (Bronson and CS Mott's) were wonderful places where I learned patience as well as  a strange solidarity with fellow parents with suffering kids. A few parents were bitter, angry and touchy (and I understand why), but most of us were positive, hopeful, supported and grateful.

Ben had a lot of brushes with 'bad luck', a couple of honest mistakes, and one situation I would term malpractice. But I would say this. Yes, the 'honest mistake' was life threatening, but..... Basically they were placing a feeding tube in his  stomach and they missed the stomach, which generally does not happen, but it happened to Ben. As a result, for about 12 hours we were feeding him formula straight into the cavity that holds the stomach and all the lower organs. Once they figured out what was happening (he was already inpatient for other reasons) he went straight into the operating room, and I was told very honestly that they did not know if he would survive. I wasn't even angry or suit-happy. All I wanted to do was to pray that Ben would survive. The surgeon who made the mistake did not do anything that anyone else wouldn't do. Nobody knew that Ben's unusual canal for placing the tube would act strangely and collapse as it did. It was not the surgeon's fault. And more to the point, in my grieved and bewildered state I recognized that he owned his mistake and did not try to paw it off on other circumstances.

To wrap up. The hospital years were strange, intense, scary at times, but they were also immensely positive in other ways. I learned so much about myself, my own lack of patience, and about what really matters when lives are on the line. I look back at those years with fondness and many wonderful memories with doctors, nurses, and fellow parents of patients. There were moments of tears and fears, but the people that surrounded me (and I was usually alone 100 miles from home) were professional but also human and supportive and caring, and funny, and real, and sometimes angry and frustrated. It was a very real time. I wouldn't trade it.

But to those who say (and they are many!) they could not do what I am doing or what I did: Seriously, neither can I. There is something very real about the urgency of a situation one cannot help. You are thrust in it. You do it. Because you must. Not because you are particularly gifted. Not because you can. But because it IS.

Special Needs and Church

This is a difficult post to write because there are so many aspects to special needs and also so many aspects to church.

Let me start with the beginning. We went to a very supportive church in Kalamazoo, Michigan which went above and beyond the first few years while Ben was in and out of the hospital. So many people took our three older kids in (kids ages 2,4, and 7 at first) ...for the day... overnight... etc.

Ben got well enough, around age 3 or 4, to actually come to church when it was not flu season, and he was in the toddler nursery and they loved him there.

When we moved to Colorado Ben was 7, and the church we ended up in was/is liturgical, which was an excellent fit for Ben. The routine of the liturgy is amazingly soothing for him. The sermon/homily is not as long, so he sits through that just fine, and all the bells and whistles (incense, icons, prostrations) -- worshipping with all 5 senses-- works really well for him too. He can be part of so much of it, and he likes it. Ben also is an altar boy now, has been since 2009, and he does very well at it, and likes working behind the altar, carrying candles, helping with communion, handing out blessed bread. It is all a great fit, and I am grateful for a church that does not require his intellectual articulation of his faith in order for him to be baptized or have communion.

Fellowship and him being within the church was also easy when he was little and cute. He was there, playing with whatever group of kids were of his age and mentality, and it worked. I did mention, previously in this blog, that kids have grown up past him and that he has gone through many mini-generations of friends at church, but at least he had friends.

I believe our church really wants to love and include Ben. The biggest problem is that nobody (including me) really knows what that looks like.

As Ben has grown older and looks older (he has to shave now, about once a month or so) he is not so cute in the eyes of people, and for those at church who did not 'grow up' with him over the past 10 years that we have been there, they are not so sure about him --- not on the playground with 'littler' kids, and not in general as to his responses, or lack of responses, nor just with his trying to fit in and hang out.

It's not just church, it's just the world in general, but I find it most painful to deal with at church, perhaps because one has high expectations of the Body of Christ, and so one thinks that people 'ought' to understand or have some enlightened sense of compassion for Ben, which most of the time people don't. They have their own little worlds and they operate in those worlds, and when Ben is in the way or seems not to fit, they mark their boundaries-- most of the time to the exclusion of Ben.

I think society explains Down Syndrome as basically a mental delay, so that Ben is understood to be mentally about 5-8 years of age, with 5-8 year old emotions, and so the impression most people have is that he can be treated like he is 5-8, he can be expected to obey, share, etc... and I have mentioned all that before.

For Ben (and I cannot speak for other teens with Down's) that does not really work. He is 17, not 5. He has more complex emotions than a 5 year old and he understands the rules and knows the behavior expected of him better than a 5 year old. What he has is a mental processing deficit that doesn't make connections that sometimes even 5 year olds would make.

In addition he has a huge disadvantage in that when he gets in conflict with a person, he cannot verbalize his position, his emotions, or his anger because his expressive language skills -- due to cleft lip and palate, due to a moderate hearing impairment, and due to Down Syndrome -- are about at a two year old level.

As a result, when he is in a situation of conflict (like someone telling him he is too old to play on the playground, though he knows he has a special permission to be exempt from the playground rule) he will resist because he knows he is right, but he cannot say why, and usually he will lose because the person who is telling him  ______________(to leave, or to return an item that is thought not to be his, or otherwise to comply with a request) wins the verbal combat. He then gets upset, and he has hit people in frustration, though most of the time he just runs and hides somewhere in a corner where nobody can see him.

I understand the frustration of an adult who is trying to keep order somewhere, who doesn't know how to relate to a kid with special needs, that is hard. What I do not understand is escalating a situation with such a kid when the kid is not really doing anything that is immediately harmful or threatening to anyone. (Of course if there is immediate risk or harm, intervene at all costs).

With a kid with special needs... when in doubt, show mercy. (I would almost use that as a guideline for dealing with all kids, but  CERTAINLY, I would use that for kids with special needs.) Why would I want to risk upsetting a child whose emotional apparatus I do not comprehend? In that case, why not call the parent and get a little help on the issue, rather than risk a situation you don't know how to manage on your own... or risk a relationship with a kid you don't know well enough to really engage with to start with.

That would be my biggest frustration with church --- the number of people who are willing to engage in unpleasantries with a kid with special needs, merely in order to enforce a rule or uphold what they find to be a 'higher principle' -- and who do not think of the emotional consequences for the kid.

I think that is worse in church than it is 'on the street', simply because church so often becomes this high-minded quest for all the correct principles, for the perfect ideology, and once that ideology has been fleshed out in detail, all one has to do is follow it --- and to 'hell' (pardon my French) with persons.

Persons with special needs do not fit all these neat boxes we can set up for what kids (or for that matter) people) OUGHT TO DO: For every box you have, be it an age box, a noise limitation box, a no-squirming in the pew box, a MUST STAND at certain times box, a don't take too much food box, a don't hog the swing box, and worst of all, the no hitting box... all these things that we OUGHT to be able to do, the kid with special needs and even the adult with special needs will not always be able to fold up and crawl into the box.  And when he fails to fit in the box, the social cost to him is high as there is great disapproval from the majority of people, and with that disapproval comes the sense that ' this is a simple box to get into, even HE ought to be able to do this .'

And then there is the parent -- and that is me.  The parent does not always take it well when you decide to take on her child---especially not when he was doing no harm. Mom's attitude is that any time he is not harming something or someone, and if he is otherwise having a good time, -- pardon me, but 'screw the rules!!'.

 Momma Bear comes out.at you--especially if her kid ran off and hid after you decided to escalate an encounter with him.

Remember ... and I just read this in a book called Special Needs and the Church.... remember Mom spends all her time fighting the school system, the social services, the right for junior to participate in all sorts of age segregated stuff, so when she finds junior thwarted at Church, she goes on auto-pilot and brings out all her fighting skills that she uses for him in the rest of the world. Yes, she OUGHT to do better in church. Yes, she ought to be patient and kind and understanding... but she too is exhausted, tired of the same old same old ever fighting for her child's rights to live and breathe around other human beings, tired of always being on 24/7 call because unless she is near junior most of the time, something will happen, and someone will think junior ought to be able to do something he cannot do, and as a result, she will WISH she had been there and not taken that ten minutes to herself to chat with a friend while junior ran off.

No, it's not usually that bad all the time, but these things come in seasons, and they come with certain personality types who for one reason or another think that mom isn't doing enough to keep junior reeled in. You know it with typical kids as well. There are always people who think you don't do what you ought with your kids. Multiply that by 10 when it comes to a developmentally disabled kid who might slug another person (yes, I agree it's unacceptable, but it happens) or who might accidentally expose him or herself because his social skills and sense of where to scratch what is not particularly heightened.

Mercy !! And I will end with this diagram (Carolyn Vance's) .Text is from Shakespeare's Merchant of Venice.

A Trans-parent View of Down Syndrome

Ever had one of those days when it's over 90 outside, you get up, get ready for work,  feed everyone, head them all for the car to be conveyed to their respective places, only to discover that your 16 year old son is wearing shorts, a tank top,  and camouflage colored snow boots with wooly socks? 

Ever had one of those days when you get ready to leave church and your 16 year old son took all the markers from the 2nd grade class room and stuffed them in his underwear and you have to drive back to church to return them because you did not notice until you wondered at his constricted walk up the stairs?

Ever had one of those days when a lady at church approaches you with a paper plate full of donuts covered with salsa, grapes, and cream cheese, informs you that your 16 year old took it and did not eat it and it is a waste of food, and what should she do with it? (And the devil inside you wants to answer, "I'm good, but you may eat it!")

  Down Syndrome - what is it?

 The dictionary says,

 noun Pathology .

a genetic disorder, associated with the presence of an extra chromosome 21, characterized by mild to severe mental impairment, weak muscle tone, shorter stature, and a flattened facial profile.

My 16 year old  son has this ...eh ....pathology (what an odious word that is), and it is about him and living with him that I have chosen to write this blog.  His name is Benjamin, he is a sophomore at our local high school. He is about 5 ft 1 inch, 102 pounds, and he loves to bowl, horseback ride, follow the birthdays of everyone in our family, and write letter.

He is the topic of this blog.

I named the blog 'trans-parent' --- because as the villain in Dicken's novel "Little Dorrit" says, "It is my character to be  _____" and then he lists a bunch of traits. It is MY character to be transparent. People tell me so, and it is both to my detriment and to my merit --- depending on the day and the topic. :P

Also,  hopefully my blog will connect with other parents, so the blog with go trans (across) to other parents. But I also hope to show the reality, the ups and downs (if you will pardon the trite pun) of daily life with Down's, for him, for his parent/parents, and for those who connect with our family.

The dictionary mentions the physical characteristics and medical manifestations of Down's only. That definition is what most people know about Down's, but that tells you little about what it is like to live with a person who has Down's. The joys and also at times the -not-so-much joys that accompany that person's sojourn with his family.

Before I delve in with a weekly post of curiosity, hilarity, or other tid-bits of life in the 'somewhat-slower' lane, let me dispel some myths here.

First of all, I am not planning a rosy rah-rah-you-can-do-it blog. I am not that personality, to start with (FAR FROM IT!!), and also there are other pep-rally spots out there telling  how persons with Down Syndrome are human beings with likes and dislikes just like you and me (duh!!).

I am also not writing specifically for families with babies who are just getting started. Seriously, if you have a baby with Down's, you  may not want to delve into teen and adult issues yet. Each day, each year has its own set of challenges.. I know I wasn't ready for teen issues when my son was just a baby.  I needed all the encouragement I could get just dealing with the medical, and frankly, he was plenty sick, that I had days when I did not think we would ever GET to the teen stage.

I am also not writing from the persons-with-Downs-are saints perspective. I remember one time when our family was in line for confession at church. My daughter reported to me that as Benjamin went up to confession, a lady said to her, "Oh, but I am sure he can have nothing to confess."  Well, as his sister, Kirsten could assure this lady that Benjamin had PLENTY to confess.

What I am doing is writing from the perspective of the parent of a near-adult son with Down's with all that it entails from the joys and the fun and the moving moments, to the medical, to the social, to the financial. to the emotional to ... to... to the unmentionable that nobody talks about, but which are issues or concerns that are real struggles for parents to deal with, that may curl the toes and hairs of siblings  (especially when things occur in public).

There is a whole person in that package with trisomy 21, and there is a whole person with hopes and fears and dreads and impatience and love and fatigue and elation in the momma to a person with Down's, and it is both those persons I hope to shed a little light on in this blog.

"Don't give up the ship", the dying command of James Lawrence in 1813 aboard the USS Chesapeake..... :) Life is a gift, and infinitely worth living. Even when  I sometimes mutter to myself, "I so totally did not sign up for this!!"