Processing

There is a book written by the father of a little girl who has bilateral perisylvian polymicrogyria, it is called Schuyler’s Monster.  In the book he talks about their visit to see Dr. Dobyn’s.  Both he and his wife were reeling from the diagnosis of their daughter, they just couldn’t get passed it.  They were sure they were going to go see Dobyn’s and be told the diagnosis was a mistake and that their little girl was going to get better.  What they had was hope.  I think I did too when we left for Seattle.  The thing about hope is that it is easily crushed.  Quite frankly, I felt crushed after seeing Dr. Dobyn’s.  I still do.  It’s been four days now and I am still trying to process what happened.  I spent months reading and learning about the brain.  I focused on that right side because that is where Jackson’s damage is.  I read countless medical studies, took notes, jotted down questions, and had a good understanding of what the right side of the brain can and cannot do.  I went into that appointment armed with knowledge and 3 pages of questions.  Within minutes those questions and everything I have learned over the last few months no longer mattered.  I never even asked him one question on my list. 

When we were given Jackson’s diagnosis the only good thing was that the damage was only on one side of the brain, unilateral.  Bilateral, both sides, is bad.  Knowing that it was just one side was my saving grace.  If I have a bad day I think “Well, I am at least thankful that there is only damage on one side.”  It keeps me going sometimes.  Four days ago Dr. Dobyn’s told us that he suspects there is damage to the left side also.  Bilateral.  Hopes crushed.  No more saving grace.  More diagnosis.  More shit to deal with. 

So to give you the full picture here is how our appointment went.  First of all, Seattle Children’s is huge!  Kevin said it was like Disneyworld because the parking areas were named the Whale Parking, the Giraffe Parking, etc.  They even give you your own badges with your picture on them to wear while you are there.  It was very big, very organized and to me, kind of a calming place.  I know this is weird but I actually felt happy there because there weren’t any “normal” children.  There were all these kids with special needs.  It made me feel kind of at home.  Of course we waited an hour and a half before we got to see Dr. Dobyn’s, so it was your typical medical office visit.  Dr. Dobyn’s seemed a little unorganized to me at first.  He spent a good 5 minutes looking for his pen, which was clipped to his shirt.  Then he didn’t have all the test results I had sent over so he spent time getting his assistants to get them.  He kept asking questions I felt he should know, like how old Jackson was, what his diagnosis was, and a general history which I had already typed up and mailed to him (per his office’s request).  I was a little frustrated.  All this anticipation and work to get the appointment and then he wasn’t prepared.  I should also mention that after 4 ½ hours of being in his car seat from the night before, sleeping in a new bed with his parents, being woke up at 6:30 a.m., being put back in the car seat, a 50 minute drive in Seattle rush hour traffic and an hour and a half wait in the reception area, Jackson was done with it all.  He was exhausted, out of his routine, and mad.  So he does what he usually does to let us know he is unhappy, he screams.  So there we were waiting for Dobyn’s to get organized with a screaming kid in the room and I was a beyond frustrated.  Finally, Dobyn’s got around to looking Jackson over, playing with his body and moving it around a little, and started asking some good questions.  After looking at Jackson’s MRI and doing some research on seizures, Dr. Dobyn’s told us that just looking at Jackson and his features led him to believe Jackson was bilateral, not unilateral.  He said a unilateral kid would be walking and talking by now.  Although he couldn’t see any damage on the MRI to the left side, he said it could be in the layers of his brain.  He also thought that Jackson’s seizures could be contributing to his developmental delay.  He talked about some brain surgery options that may be considered down the line to help with the seizures but suggested we do whatever we can to get the seizures better under control through medication.  He did say that Jackson’s head size was normal, which was a good sign.  Apparently some kids with PMG have either a small or large head which is an indicator of problems.  Dr. Dobyn’s himself was confused by Jackson.  He wasn’t sure why Jackson hadn’t developed more and said that there was something going on that he just couldn’t see.  So instead of some answers or clues, which I thought we were going to get, we got more unanswered questions, more mystery.  He accepted Jackson into his study, told us to work with our neurologist and get aggressive with these seizures, asked us to come back in a few months and if the seizures aren’t better by then, then we would come back and see him and see the epilepsy specialists at Seattle Children’s.  As we left he said “There’s definitely someone knocking around in his head, we just have to figure out how to get him out.”  I liked that.  I think Dr. Dobyn’s is just as interested as us in finding out what is happening in Jackson’s head, and I’m glad we have such a knowledgeable doctor ready to work with us.   As we got in the car and drove away from the hospital Kevin said something to the effect that he thought that the appointment went well and was good news, I on the other hand, burst into tears.  It was good in the fact that we now have more resources for Jackson and I have wanted to see an epilepsy specialist and now we may get that chance.  But it was very hard for me to hear that there may be damage on that left side.  Dr. Dobyn’s told us there was a good chance he will be mentally impaired and need care for the rest of his life.  That kills me.  I want Jackson to have a shot at life.  Just simple things like running and playing, going to school, having friends, having the chance to set goals for himself and the opportunity to achieve them.  I don’t think it’s fair that he may not get a chance that so many other kids get.  I just want what every parent wants for their child and for some reason my baby doesn’t get an equal chance.  And it hurts me in a way I can’t even explain with words.  So much came from this appointment and it has kind of put me in a tailspin.  I feel like we got the diagnosis all over again and now I have to break through all this sadness, fear, frustration, anger and grief again and I just don’t have the energy for it.  Right now I just feel drained and hurt.  I want to crawl in bed and feel sorry for myself for a few days.  Then I look at Jackson and see how happy he is, how cute he is, how he makes me laugh every day, how I love him so much it hurts, and I know that I just have to pick myself back up, love on my little boy, take care of him, and make sure he doesn’t feel like there is anything wrong in his world.  Basically I have to be a mom.

When Jackson had his overnight EEG in March at Sacred Heart they determined he wasn’t having seizures in his sleep, which is very good.  However, the first night we were in Seattle sleeping with Jackson we discovered he is having seizures in his sleep.  He had them every night we were in Seattle.  This is very bad as it causes epileptic regression.  Essentially this means that Jackson may take two steps forward developmentally, but with epileptic regression, he will take a step back.  It will cause more damage to his brain which will hurt his ability to make progress.  This was difficult for me to find out.  Another good thing for Jackson turned into a bad thing. 

After the appointment I emailed my sister an update (she’s on vacation).  She emailed me back and told me that she had a dream the first night of her vacation that she and my Dad were talking about Jackson.  For those of you who don’t know, my Dad died in May.  She said that Dad told her Jackson was going to be ok.  Alright, maybe it was just a dream, someone else’s dream, but if my Dad is sending me a message from wherever he may be, I’m going to hold on to that.  I really need something to hold on to right now, and I know my Dad would never lie to me.  If my Dad says Jackson will be ok, then he will.  He will. 

Off to Seattle

We are off to Seattle today.  Tomorrow we meet with Dr. Dobyns.  He is the leading expert on Jackson's condition.  People fly from all over the world to see this guy about their children who have polymicrogyria.  I am excited, and a little nervous, to meet him and hear what he has to say about Jackson.  I hear he is very blunt but right on about most kids.  I am preparing myself a little in case he tells us something bad about Jackson that we don't know.  I'll keep you all posted on what we find out about our amazingly beautiful boy!

I really, really, really hate seizures

I know “hate” is a very strong word that offends a lot of people, but I really do hate seizures.  I can deal with my little boy not having a perfect brain, having to go to therapy, not walking, not talking, and not developing like other kids.  But what I really have trouble dealing with is his seizures.  They piss me off and break my heart at the same time.  I’m not a violent person but if seizures were a person walking the streets, I would buy a gun and shoot the crap out of him.  I just want them to go away.  A couple of days ago I was looking at the obituaries in the paper (I know it’s weird to read them but I do) and there was this beautiful young girl, 23, in her last year of college, just starting out in the grand adventure of life.  I read her obituary and there at the end was the reason she died – epilepsy.  She was killed by a seizure.  John Travolta lost his son to a seizure.  This is always in the back of my mind.  A killer lives inside my son’s brain, and he isn’t leaving. 

Jackson’s journey with seizures began at 14 months.  We were on vacation down in Florida at Kevin’s parent’s house.  I was feeding him a bottle and all of the sudden he dropped the bottle and threw his hands up in the air like I scared him.  I thought I did scare him.  Although I was just sitting there rocking him in the chair while he drank.  I didn’t think much about it and didn’t even tell Kevin.  A couple of days later he did it again during a feeding.  This time I ran and got Kevin.  We both thought it was weird and decided we should call our pediatrician back in Spokane.  So I did and the nurse asked all kinds of questions – what was he doing when it happened, does he have a fever, has he acted sick, etc. etc.  Finally she said she didn’t think it was much to worry about but to call when we got home and come in for an appointment.  We did just that and our pediatrician said it sounded like a seizure.  He ordered an MRI.  On July 1, 2009 Jackson had that MRI which led to his diagnosis.  A couple of days later Jackson was going in for an EEG.  From there we went to the neurologist who said those hateful words – seizures, epilepsy.  By this point Jackson was having seizures sometimes up to 10 times a day.  They were fairly quick and didn’t seem to bother him much.  However, the bad thing about seizures is the long term effect it has on your brain.  In Jackson’s case, since he already has a half of a bad brain, we don’t want any more damage done.  Jackson was right away put on an anti-seizure medication called Keppra.  When that didn’t seem to help we switched to Trileptal.  When we made that switch and Jackson stopped using Keppra, he became a different kid.  He was more alert, interactive, and responsive.  We didn’t realize the numbing effect Keppra had.  So now we not only have to weigh the effect of the seizure meds on stopping the seizures, but what effect it is having on his daily ability to function.  Since Jackson has what is called intractable seizures, meaning he will always have them and they will never be under control, our best bet is just to try and find a medication and dosage that makes his seizures less frequent and intense but also maintains he quality of life.  The Trileptal didn’t work much either so we went into the hospital for what was supposed to be a three day/two night video EEG.  Basically Jackson would be under constant video and have the electrodes attached to his head for the duration of the stay.  Every time he had a seizure we hit this little button so they could record the EEG activity during that time.  Jackson had so many seizures that we were there less than 24 hours before they got the information the needed.  Two good things came out of that hospital stay – we found out Jackson wasn’t having seizures in his sleep (very good) and they were able to pinpoint the type of seizures he was having (myoclonic).  Since we knew the kind of seizures he was having, we switched medication that is specific to those types of seizures.  On the new medication – Topomax – his seizures did improve.  But not for long.  One other thing we have been told since the beginning is that Jackson’s seizures will get worse over time and may eventually become Grand Mal seizures (the fall to the ground and convulse kind).  They are indeed getting worse.  Whereas they were relatively quick (maybe 5-8 seconds long) and didn’t bother him much, they are now 15-20 seconds long, he is starting to shake (convulse) his arms and legs, and he is extremely agitated afterwards.   We’ve upped the medication amount twice now, and I’ve taken him off a medication that was supposed to help with his vomiting but I felt was making his seizures worse (Moms – always, always, follow your gut), and they aren’t as frequent now.  On a good day he will have 2-3, on a bad day he might have 5.  But it doesn’t matter how many he has, what matters is that he is having them, and it kills me.  I’d give my right arm to have the seizures for him.  I really wish I knew what it was like to have a seizure so I could know how to better comfort him afterwards.  All I can do is just grab him and hug him and tell him it is going to be ok (a lie).  Sometimes when he has one I get scared that it won’t stop.  Sometimes, I get infuriated and want to throw things and scream.  Other times, I cry.  Just having to sit back and watch him suffer through a seizure is the most helpless feeling I have ever experienced.  It sends me down the dangerous road called “Why my son?”  Being on that road makes me look epilepsy in the eye.  Facing your nemesis every day is a strong motivator.  I can’t cure Jackson’s epilepsy, but I can fight it.  I may lose every round but at least I can try.  Knowledge is power, and I am going to start filling my brain with knowledge about epilepsy.  I just hope I can learn enough and be strong enough to take an aggressive approach to treating Jackson’s epilepsy, one that will make his quality of life a little better. 

When I first heard Jackson had epilepsy I remember thinking “He’ll never be able to rock climb.”  That was really hard for me.  I wanted a little climber.  When I was pregnant I would look at the little full body harness and tiny little rock climbing shoes at REI.  I looked forward to family climbs with my boys.  I wanted to share Kevin’s and my love of climbing with our little boy.  Sadly, I was already limiting Jackson on what he could do.  Now that time has passed, I’ve altered that thinking.  Jackson can and will climb someday.  He won’t be able to lead climb, and no matter how small or easy the climb he will constantly have to wear a helmet.  But with the support and love of everyone around us, Jackson will get to the top of the climb.  And when he does, we will have won a round with epilepsy.  That day is going to come Mr. Epilepsy, so get ready to lose!

To Therapy We Will Go

Having a special needs child alters your life in many ways.  The biggest alteration to our lifestyle has been therapy, more therapy, and some more therapy.  Jackson needs and gets a lot of help.  On Monday’s we go to the Guild School where Jackson hangs out and plays with toys with his special education teacher, Shirley.  Then he sees his physical therapist Alecia.  Tuesday we head back to the Guild School where he sees Jan, his speech therapist.  Afterwards he has occupational therapy with Joy.  Thursday’s we go to St. Lukes where he gets in the pool with Dave for some aquatic therapy.  Every other Monday Lisa comes to our house to give him some massage therapy.  Throw in a doctor appointment here and there and Jackson has quite a busy schedule.  When I changed calendars in January, I looked back through the previous year calendar and was shocked when I started going through it.  From January to June there were hardly any entries on my calendar.  Then in July (when we got his diagnosis) we had something written down for almost every day for the rest of the year.  When people ask me what I do for a living I sometimes say “I am the personal assistant to Jackson Klim and am Executive Director of the Klim House”.  People seemed impressed at first, until I tell them Jackson is my son and the Klim house is where I live, then I just get a few laughs.  But seriously, it’s no laughing matter, the kid keeps me busier than any job I have ever had! 

Without therapy I honestly don’t think Jackson would be where he is today.  While his progress has been great, therapy hasn’t always been.  When he first started at the Guild School all he would do during every therapy was cry as loud as possible.  He wouldn’t play with toys, he would fight the physical stuff, and he would cry, cry, cry.  It was exhausting, for me and him.  I desperately wanted him to work hard so he could make some progress.  He desperately didn’t want to do any work.  Instead of working, he focused his attention on objecting to it, in a very loud manner.  At times I just wanted to grab him and run all the way home, saving my baby.  Other times I was just as frustrated as he was because I wanted him to work.  I don’t know how long it was before he would only cry most of the time instead of all the time.  It seems like it was 3-4 years.  Since he is only 2 years old I think that is a wrong estimate.  Eventually his crying became less and less and he would do some of the work.  Then one day I took him to therapy and was told I was being kicked out.  The therapists all felt Jackson was crying in a bid to try and get me to save him from the devil therapists.  I was no longer allowed in the room while Jackson was getting therapy.  I was crushed.  I wanted to see him make progress, I wanted him to know I was there supporting him, I just wanted to be there.  Very reluctantly I agreed and made my way down to the parent room at the Guild School (the parent room is a room with a couch, chairs, books, tv, and kitchen area).  It only took me about 30 minutes to realize how much I liked this new routine.  Why?  I was in the parent room, alone, no child, no crying, time to myself, I could do anything I wanted, how glorious it was! The best part – Jackson had a fabulous day with his therapists and didn’t cry.  Just like that we had a new routine.  Jackson has been doing so much better at therapy without me in the room and I have gotten some desperately needed down time (something EVERY mom needs).  I still miss being in there with him, but I go see each therapist after each session and they tell me what they did and how he responded.  I can also watch him behind the one way glass window. 

The one therapy Jackson has never objected to is aquatic therapy.  He loves the water and will do just about anything Dave tries to get him to do.  Aquatic therapy is definitely his favorite therapy.  Having said that, Jackson seems to love all his therapists and reacts differently to each one.  Shirley is quirky and funny and he kind of acts the same way when he is with her.  Shirley is the one who discovered that Jackson is a “faker”.  He likes to fake that he doesn’t feel good or is too tired to do any work.  Now that Shirley figured him out, his faking gig is up.  Alecia is very gentle and sweet and he takes advantage of that.  She is his physical therapist (his least favorite therapy) and he gives her a run for her money.  Jan sings to him with her beautiful voice and he quiets down, plus she has a lot of fun toys.  Last week Jan was trying to get him to play with a new toy, he wouldn’t.  He showed absolutely no interest in it.  So Jan turned around to get another toy and when she did Jackson started playing with the new toy.  Sly.  He plays hard to get with her sometimes, I haven’t figured that one out yet.  Then there is Joy.  Jackson lights up with Joy.  She rough houses with him and he LOVES it.  She makes him work hard too but makes it fun so he will do it.  The most beautiful thing to me about Jackson’s therapists is how they always focus on the progress and strengths he has.  As a parent of a special needs kiddo I think we sometimes focus on what our kids can’t do.  That’s because when we go to doctors they always tell us what our kids won’t be able to do.  I think it’s their way of preparing us.  Having professionals tell us the positive, wonderful things our son can do makes me feel less alone and scared. 

People always ask me if I do therapy stuff at home with him.  The honest answer is I have good intentions.  I do try now and again.  The therapists give us a lot of ideas and tools to work with at home.  The thing is I want Jackson to just be a little boy sometimes.  He has a lot of challenges ahead of him, he has a lot of challenges now.  When we are home I just want him to play on the floor, or swing in his swing, or throw his toys from the highchair.  That’s not to say that I don’t want him to make progress and reach his version of the developmental milestones.  More than anything I just want him to be happy, play his way, and hang out with his family.  I don’t want our home life to be constant therapy.  Jackson needs to learn how to explore the world on his own too.  We can’t show him how to do everything, he needs to figure some things out for himself.  So I slack off a little at home.  I guess I won’t be getting the mother of the year award.  But I don’t need no stinking reward, I have Jackson.

Reactions

People have always reacted to Jackson.  Strangers stop to tell me how cute he is, how big he is, how they like his little glasses.  I of course have loved all these compliments on my baby.  But as he gets older I know people will start to recognize his differences and instead of stopping to talk about him, they may stare.  He still gets lots of “oh he is so cute” compliments and for the most part looks like a “normal” little boy, which I am thankful for.  A few months ago we were in Costco and were in the process of checking out.  Our checker was a woman and the boxer was a young man.  The boxer asked how Jackson hurt his hand.  [Jackson wears a brace on his left hand to keep his hand open.  Because the damage to his brain is on the right side, it affects the left side of his body.  As a result Jackson keeps his left hand in a fist.  The brace opens his hand to send a message to his brain that he has a hand and to use it.]  I told the young man Jackson’s hand wasn’t hurt, that he had brain damage and the brace is used to help him use his hand.  The checker stopped scanning our items and turned to Jackson, as did the boxer.  The checker said “But he’s so perfect” and they boxer agreed.  He asked if Jackson would get better someday.  I told him the damage was done and he would never be “normal” but that he would make continue to make progress.  They both stood there staring at Jackson for what seemed an eternity.  Finally the checker started scanning again and we were soon on our way.  But not without her commenting about how perfect Jackson is a couple of more times.  Their reaction was so surprising to me.  I thought it was funny and I still do.  But I also think of how just some random little boy shopping with his mom affected two strangers in a very touching way. 

Then there are the bad reactions.  At the pool one day waiting for Jackson to start therapy, he was sitting on my lap and sneezed.  I got up, carried him over to the desk and got a Kleenex.  As I was walking by, a young girl (who I later found out was 19 years old and had a 1 year old baby) said to me “How old is your son?”  I replied “He’s 2.”  She remarked “And he can’t walk?” This was the first time a stranger had ever made any kind of negative remark about Jackson to me and I was a little shocked.  My initial response was to turn to her and say “No you dipshit he can’t walk.  Why do you think he is here to get therapy?  Why do you think he is the only baby in the pool while everyone else in the pool is an adult?”  Instead I just coldly replied “No.”  It must have sounded cold too because she instantly started to apologize and tell me she didn’t mean to be so rude.  Thankfully Jackson’s therapist came at that point and I didn’t have to communicate with her again.  But for the rest of the day it bothered me.  I kept telling myself she was a young girl and just didn’t understand, but secretly I wanted to go find her and slap her.  Even writing about it now I still want to slap her.  Unfortunately, I know that she isn’t going to be the last ignorant person I will encounter with Jackson.  I hope by the time the next one comes along I will be calm, rational and able to educate them rather than try to slap them. 

I think my favorite reaction to Jackson came from my Dad.  When we got Jackson’s diagnosis it took us a while to call our families and tell everyone.  Telling my Dad was the hardest for me.  I knew he would worry endlessly about Jackson, Kevin and I.  But I also felt that in a way I had let him down.  I wasn’t able to give him a “normal” grandson.  It took me most of the day to call him.  When I finally did, I chickened out.  I just couldn’t do it.  I spent another hour or so getting my nerve up to call Dad back.  This time, with tears in my eyes and a choked up voice, I told him.  He was quiet for a few seconds and then he said “Well Honey, I guess we’ll just love him more.”  Yup Dad, I guess we will.

The No Good, Very Bad Days

Sometimes I have bad days.  This happens to everyone.  When it happens, it feels like you are the only one in the world having a bad day.  Everyone around you seems like they are happy and having a good day.  And it kind of pisses you off and makes your bad day even worse.  The worst part is that maybe your day started off great and you thought “I am going to have a good day!”  Then it turns into a bad day for whatever reason.  Today is my bad day.  It did start out great – Jackson slept in until 10:30 a.m. (which he never does), we got ready, went for a walk, saw deer and horses and cats, then had some lunch, Jackson went down for a nap and BAM here came my bad day.  What happened?  I sat down at the computer and started doing research on Jackson’s condition.  We have a doctor appointment over in Seattle at the end of this month with a doctor who is the leading expert on Jackson’s condition.  People fly from all over the world to see this guy.  I’m trying to learn as much as I can about the brain, seizures and PMG (polymicrogyria) so I can ask him some questions that will help me better understand the mystery of Jackson.  For the last week or so, every time Jackson goes down for a nap I hit the computer, read medical studies or go back through some of the books I have read and take notes.  I have the librarian at Sacred Heart Medical Center looking for articles for me.  Jackson’s neurologist has given me some articles.  I’ve even ordered another book on epilepsy because someone recommended it.  I’m sick of it and overwhelmed by it.  I’m tired of words like cortical lamination, schizencephalic clefts, intractable epilepsy, spastic hemiparesis, and parasagittal parieto-occipital.  I’m a teacher for crying out loud, not a freaking doctor!  I just want to know if my baby is going to have a good quality of life someday.  I just want to know if someday I will hear him say “mommy”.  God I want to hear that so bad.  I just want to know if someday Jackson won’t have to go through a day suffering a seizure.  I just want some answers, or even a clue or two, about what to expect.  And for now the best way to do that, I think, is to educate myself about brains and malformations and effects of shallow sulci.  But in doing so I have to read about the things I fear.  How 84% of children in one study had uncontrollable seizures, how 58% in another study had no language ability.  I hate that my son is going to be a statistic.  I hate that doctors are interested in him because they want to see what he will be able or won’t be able to do.  I hate that my beautiful little boy, with the best laugh in the world, is going to have so many struggles ahead.  And the truth is I hate that he may be this way because of something I did when I was pregnant.  Right after we got Jackson’s diagnosis we had some chromosome testing done.  It came back that Jackson had no chromosomal abnormalities, meaning by the looks of the chromosomes he should have been normal.  Then we went and saw a geneticist.  This was tricky because Kevin and I are both adopted so we have no medical history.  The geneticist asked us a bunch of questions and told us her best guess was that it was just a fluke.  There is however one test we can do – it costs $3000 and there is a 4% chance we might get an answer.  For $3000 I want a 100% chance at an answer.  Needless to say we didn’t do the test.  We just chalked it up to being a fluke.  The neurologist told us that it could have been as simple as Jackson moving wrong in the womb and cutting off blood supply for a 30 second period.  A fluke.  But it was my job to grow him. I tried so hard to do everything right and somehow I failed him.  As I sit and read these studies and the reality of Jackson’s life is slapping me in the face, I feel guilty.  I wish I could go back to being pregnant with him and try again.  I try to remember anything and everything I did when I was pregnant to try and pinpoint where I went wrong.  I know in my head that this is a waste of time and energy.  There probably wasn’t anything I could do.  I just can’t help it though.  I think I will always have a sense of guilt.  I guess that is why I keep punishing myself with these darn medical studies, looking for answers.  Answers I may not get for 15 or 20 years, if ever.  I’ll keep reading and learning, turning my good days into bad, for my baby.  I’ll do it for him, because he is so worth it.

Holland and other visits never imagined

A few weeks after getting Jackson’s diagnosis I came across this anecdote called Welcome to Holland (see below).  The first time I read it I remember thinking “That’s it! That’s what it’s like!”  I ended up putting it in our Christmas cards that year.  It felt so good to have something that explained what it was like to have a special needs child in a way that everyone could understand.  But the truth was I still really wanted to go to Italy.  I’d see other parents in Italy, and having a great visit, and I was jealous.  I would think “Why are they so special, why do they get to go to Italy and I only get to go to Holland?”  It’s difficult to say that.  I think of all the people who really want children of their own and for some reason can’t, or those who spend enormous amounts of money trying to conceive a child or adopt one, and here I have a beautiful little boy and I’m wishing I got to go to Italy.  I felt like I was being really selfish and ungrateful for what I had.  The only consolation was that I knew I wasn’t the only special needs parent who felt that way.  It was just a natural feeling and part of the process you go through when you get the diagnosis.  I’ve now been in Holland for 15 months and I’m happy to report that this place is beautiful, amazing, diverse, and just plain “special”.  Don’t get me wrong, I still have my moments of wanting to go to Italy, but with each new day that desire is slowly going away.  Holland is definitely not where I ever thought I would be, and I’ve had to read a lot of guidebooks to navigate my way around.  And on this trip there have been a lot of laughs, tears, frustration and joy.  But Holland is where Jackson is, and that in itself makes Holland the most beautiful place on earth and the only place I truly want to be. 

WELCOME TO HOLLAND

By Emily Pearl Kinglesy

I am often asked to describe the experience of raising a child with a disorder, to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It’s like this….when you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy.  You buy a bunch of guidebooks and make wonderful plans.  The Coliseum, Michelangelo’s David, the gondolas in Venice.  You may learn some handy phrases in Italian.  It’s all very exciting.  After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.

Several hours later, the plane lands.  The stewardess comes in and says, “Welcome to Holland.”  “Holland?” you say.  “What do you mean, Holland? I signed up for Italy!  I’m supposed to go to Italy.”  But there has been a change in the flight plan.  They have landed in Holland and there you must stay.  The important thing is that they haven’t taken you to a horrible disgusting, filthy place full of pestilence, famine and disease.  It’s just a different place.  So you must go out and buy new guidebooks.  And you must learn a whole new language.  And you will meet a whole new group of people you never knew existed.

It’s just a different place.  It’s slower-paced than Italy, less flashy than Italy.  But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they are all bragging about what a wonderful time they had there.  And for the rest of your life you will say, “Yes, that’s where I was supposed to go.”  The pain of that will never, ever go away, because the loss of that dream is a very significant loss.  But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the lovely things about Holland. 

Who is this Jackson?

At the ripe young age of 2 years and 5 months Jackson has started to develop his personality and make progress.  While he is still very behind developmentally, he is slowly but surely getting there.  It’s no surprise to us, the doctors told us that was how it was going to be.  I believe they said something to the effect that he would hit his milestones, just a lot later than a normal developing child.  Having said that, the kid continues to surprise us on a daily basis.  Just when I begin to think he isn’t ever going to do something, he does it.  I’m beginning to wonder if he is just holding back and senses when I am about to give up.  For example, at the beginning of the year my main goal in life was to get Jackson to feed himself.  You see, I had gone to a birthday party of a one year old who was able to feed himself.  The mom simply put him in his high chair, put some food on his tray and walked away while he ate.  To that mom, it was perfectly normal.  To me this was an experience I associated with going to Heaven.  Don’t get me wrong, I didn’t mind feeding my baby.  But at 4-5 meals a day, feeding time was pretty much my livelihood.  I remember coming home and telling Kevin about all the stuff the one year old could do and how it made me sad that Jackson wasn’t ever going to be “normal”.  Kevin’s response was “I feel sorry for those parents, because they will never know what it is like to have a son like Jackson.”  (He says this kind of profound stuff all the time and it makes me wonder how Jackson and I got so lucky to have him).  So I decided to dedicate a couple of meal times every day to teaching Jackson how to feed himself.  I tried diligently, with all kinds of shapes and sizes of food.  Nothing.  Every once in a while I would put something in his hand and he would put it in his mouth, but for the most part he couldn’t do it.  So I gave up.  I moved on.  I accepted that I would have to feed him.  Then one day this summer he grabbed something off his tray and stuck it in his mouth.  I almost fell out of my chair.  Was it a fluke?  A happy accident?  Or could it be he was ready?  I instantly ran to the cupboard, got some goldfish crackers, put them on his tray, and stepped back.  Wouldn’t you know it, the kid started picking them up and eating them.  Not every one of them made it to his mouth, but most did.  I started crying.  I didn’t want to get too excited in case it was a fluke.  So I anxiously waited until the next day to see if he would do it again.  He did.  I cried again.  So we went to the store and I slowly went up and down every aisle buying food I could put on his tray that he could pick up and safely eat.  The first couple of weeks was just like I imagined – Heaven!  He would be eating and I had a few extra minutes to do whatever.  Mostly I would stand in the kitchen, watch him eat and cry.  That’s the difference between having a normal child and a special needs child.  Most parents would be excited and think “cool” that their normal developing kid could feed themselves.  Special needs parents cry and feel like throwing a party, or at least posting it on Facebook (which I did). 

So back to my question – Who is this Jackson?  Well he can make you laugh you’re a—off at the drop of a hat.  He can make you say “You are so cute” around 500 times a day.  He can make you crazy with his constant babbling/screaming. When he eats his food, he makes these wonderful “Mmmmm” sounds like it’s the first time he has ever had food.  He can roll around on the floor like nobody’s business.  Currently he is in love with his boy parts and as soon as that diaper comes off he starts his yanking.  He loves to go on walks every day.  He is an animal lover.  He likes anything with lights and weird sounds.  His favorite therapy is aquatic therapy and he loves baths.  Sometimes he gets this mischievous look on his face and I would give anything to know what he is thinking.  Sometimes out of nowhere he will start laughing hysterically and you can’t help but join him.  He can let everyone in a 1 mile radius know he is unhappy (boy that kid has a set of lungs).  He knows the words “stop” and “no” but has selective hearing when they are said.  He likes to watch other kids play.  His favorite drink is a chocolate milkshake.  He loves the beaches and ocean in Florida, but doesn’t particularly care for the long flight to get there.  He’s a faker - if he doesn’t want to do something (especially at therapy), he fakes that he is tired or uncomfortable.  He loves roughhousing with Daddy and kisses from Mommy.  He has a love/hate relationship with his car seat.  One day he is happy to get it in and drive around, the next day he arches his body and fights getting into it.  He thinks it is hilarious when you put him in a shopping cart and push him around a parking lot (it’s bumpy).  The only store he likes is Costco.  He throws fits in all the other stores.  He doesn’t like people eating anywhere near him when he isn’t eating.  He gets very mad if he sees you (this is why Kevin and I sometimes have to hide from him when we eat).  He thinks Mommy is very funny when she is dancing (I try not to take this personally).  And every night, when I go into his room after he has fallen asleep to cover him up, well, he can make your heart melt at the sight of him.