Our Great Floridian Adventure

We've been in Florida now for 10 days and I FINALLY have time to sit down and write. It has been a long, exhausting, sickly, good time down here in the sunshine state.

First of all I would like to give a shout out to my boy Jacky Jack. He was totally amazing on the plane ride down. After getting him up at 4:30 a.m., putting him through security, flying 2 hours to Denver, a long, boring 3 ½ hour layover, another 4 hour flight to Orlando, rental car pickup, and 1 ½ hour drive to Vero Beach, the kid had every reason in the book to have numerous meltdowns. But he didn't. It was such a wonderful shock considering that he has spent the last month in misery trying to get his last two second molars in. Instead of having one of the worst days of our lives, we had a relatively easy day of travel. For the first time Jackson was able to actually sit up in his seat (he even had his seat belt on) so we were able to put the Ipad on the tray table, put on his favorite cartoon (Dinosaur Train), feed him and fly toward our destination. The only down side is that he has gotten so big it was hard for him to get comfortable and lay down between us for a nap. For not having a nap all day, he was amazing! We arrived at the grandparents house exhausted but overly pleased.

Two days later we woke up to Jackson's screams. When I rolled over to comfort him, he was on fire. Kevin got all his clothes off and ran him outside while I gave him ibuprofen and got him some cold water. We then brought him in and took his temperature – 103.5! We took his diaper off and let him roll around naked and I began taking his temperature every ½ hour. Jackson fought the fever for about 24 hours reaching a high temperature of 103.7. We obviously knew he was fighting off something but had no idea it was about to attack us all. Before we knew it Jackson wasn't the only sick one, his mom, dad, and grandpa all fell victim to the cold virus. For the most part Jackson has been in pretty happy spirits. But we did have one night when Jackson would not go to sleep. He began screaming around midnight and nothing worked to comfort him. Around 2 a.m. I was at my wit's end. I knew something was wrong with him but I didn't know what and I was ready to go to the emergency room. We tried feeding him before we left thinking maybe he was just hungry. He didn't really seem interested in the food and threw most of it up. So we packed up and headed for the hospital at 2:30 a.m. Once we got in the car Jackson stopped crying and relaxed. By the time we got to the hospital he was fine again. We opted to not go in but head back home and see if he would sleep. Sure enough he did. We never figured out what was wrong, maybe he just wanted to see what it was like to drive around in the middle of the night. In case you were wondering, it's a ghost town at 2:30 a.m. in Vero Beach, Florida.

Despite being sick and tired for the last 10 days, we've also had our highs. Spending time with Kevin's parents has been one of them. They absolutely adore Jackson and just having him in their house makes them smile with joy, which is priceless. Jackson's high has been going for walks on the beach. He LOVES the ocean and is so happy when we go there. Yesterday was particularly windy and if you know Jackson, you know he loves the wind. He was so excited he couldn't hold still and I thought he was going to lunge himself out of the stroller from his wiggling with joy. It's these little weird quirks about Jackson that just make me laugh and make me realize how lucky we are to have a different kind of child. I've had a few highs myself. I almost cried for joy yesterday when I caught a glimpse into Jackson's mouth and saw the last two molars had poked through. It was a Christmas miracle! I had a feeling they may have poked through as Jackson has gone back to being pretty happy and wanting to cuddle up with me again. He hasn't been very lovey dovey towards me for the last month because I think he has sensed my frustration and rattled nerves with the teething. But my biggest high has been that Jackson has acted happy to see me on a few occasions. This is something that he has pretty much only done with Kevin. The other day on the beach Kevin was pushing him in the stroller and I ran up to the side of the stroller and said “Hi Jackson!” He turned towards me, smiled, wiggled a little and reached out for me. That was the first time he ever did that. It was beautiful!

Another high is being around Kevin's family. Kevin has an aunt (who lives one house down from his parents) and 4 cousins who live here in Florida. They all get together at Christmas and last night we went over to see them. It's so heartwarming to me to see all of these people love my son so much. It seems to me like it is a different kind of love they have for Jackson, a very special kind. They never look at him like he is different, they are all interested in his progress and development, they want to be around him and last night showered him with wonderful Christmas presents. I think if Jackson was your neurotypical child he would not mean so much to people. My special son is certainly a special gift.

Hmmm it appears that I have more highs than lows. When I sat down to write I was sure I had more lows than highs. It's amazing what happens when you start focusing on the good things. I suppose on this Christmas day when I am missing my Dad pretty bad that maybe I should focus on the highs. Maybe we all should. Merry Christmas everyone!

On a side note for those of you who read my blog and have a disabled child, if you are flying on Southwest airlines, go up to the counter before boarding and tell them your child has special needs they will hand you a blue boarding pass. This little blue boarding pass allows you to board the plane first before all the other passengers. It was wonderful getting the seats in the front for a change!

What I'm Most Afraid Of

I belong to this online group that is for parents of kiddos with PMG (polymicrogyria) which is part of Jackson’s condition.  It’s a great group with members from all over the world and there are often a lot of interesting discussions.  The most helpful thing is that it makes me realize that there are other parents out there going through some of the same stuff we are.  But more often than not, these parents are going through even more than I can imagine.  A lot of the kids with PMG have epilepsy because of the brain malformation.  There is a lot of discussion in the group about monitoring units in their children’s bedrooms so they can hear if they are having a seizure.  There are parents that sleep in their child’s room and/or bed so they will always be there.  These parents often talk of how exhausted they are from the lack of sleep.  Not only can’t they sleep comfortably but they are afraid to sleep because they fear their child may have a seizure in their sleep and die.  A difficult glimpse into the extraordinary lives of parents of special needs kids. 

A few weeks ago a woman posted that she had lost her child the night before.  She was telling us to hold on to our children and be thankful for every day we have with them.  Her child died from SUDEP, Sudden Unexplained Death in Epilepsy.  It’s how John Travolta’s son died.  They have an extremely intense seizure that kills them.  I have to admit that since we discovered Jackson was having seizures in his sleep in October I have been more wary of every little sound he makes at night.  Yesterday he slept until almost 11 a.m. and around 10:00 I turned the monitor up all the way so I could hear if he was breathing.  When I don’t hear him for a few minutes my heart starts pounding and I start thinking he’s dead.  Then a few minutes later I will hear him and I relax.  It may be irrational, there may be nothing I can do about it, but it’s my biggest fear - Jackson has a seizure in his sleep, he dies and I find him the next morning.  I don’t spend a lot of time dwelling on it, you just can’t.  But it is always there in the back of my mind.  While I’m terrified of him dying, I’m also scared that Kevin and I may have to take care of Jackson until the day we die, and I worry endlessly of who will take care of him after Kevin and I are old and gone.  

There are so many things I think of these days that aren’t what I imagined I would worry about when I thought about becoming a parent.  But I suppose that is what being a parent is about, the unexpected joys, surprises, and worries.    

Demons

Some of you know that Jackson is currently getting his last two second molars in.  To put it mildly it has been a freaking nightmare.  They bottom right one has been coming in for like a month.  I look in his mouth every day and I can see the tooth right under the skin but the damn thing won’t pop through.  We have had days of non-stop crying and nap refusals.  Another one of those “joys of motherhood” things, right?  So last night I was watching Eat, Pray, Love with Julia Roberts.  Awesome book by the way, movie was so-so.  There was a part in the movie where Julia Roberts is standing there watching this healing guru in Bali treat a screaming baby.  His wife is standing next to Julia Roberts and she says “Child tormented by demon.”  The guru rubs something on the baby’s gums.  Julia Roberts says “It looks like teething.”  The wife looks at Julia very seriously and says “Same thing.”  I had to rewind it and watch it numerous times because I was laughing hysterically.  I agree, demons, teething, same thing.  So of course today Jackson was screaming and sticking his fingers in his mouth and I started yelling “Go away demons! Leave Jackson alone!”  Jackson looked at me briefly, gave me a funny look, then resumed his screaming.  Obviously it didn’t work, but it really made me feel better.  So if you see me sometime in the future yelling at Jackson about demons, I haven’t lost it (yet). 

Family Outings

Thursday night Kevin, Jackson and I went on the Coeur d’Alene Christmas Light cruise.  It was a gift from our realtor and I had been looking forward to it for a few weeks.  I don’t know what I was thinking!  We were trapped on a boat for two hours with a screaming, miserable little boy named Jackson. 

When I was pregnant, well actually probably even before, I had all these beautiful visions of what it would be like as my child grew up.  I wanted to do all the fun activities with him/her that I either did as a kid or wanted to do.  Things like family bike rides, skiing together, driving around looking at Christmas lights, going out for pizza, bowling, roller skating, unexpected trips to Baskin Robins, you get the idea.  I couldn’t wait to explore the world with my child.  Then Jackson was diagnosed and I realized I may never get to do those things.  But in just doing our day to day thing, sometimes I forget he isn’t your typical child.  I know that may sound weird but it’s true.  Jackson is my little 2 ½ year old.  He loves to eat, he likes to watch cartoons, he likes shopping at Costco, he is sometimes cuddly, sometimes he pushes me away when I try to kiss him, he gets excited when his Daddy comes home from work, he likes his cat Bella, he is ticklish.  Just your typical 2 ½ year old.  Only he’s not.  Jackson is a creature of habit.  He likes to be home.  He wants to eat in his highchair, roll around on the floor and sleep in his crib.  New places, situations and people are sometimes a little bit too much for him, which leads to screaming meltdowns.  I know this, but sometimes I just forget.  I just want to go do stuff with my boys, have some family time and expose Jackson to fun things, but that isn’t how Jackson operates.  As we were trapped on the boat out in the middle of Lake Coeur d’Alene I said to Kevin “Why did you let me take us on this cruise?”  He replied “I thought you had a plan.”  Well I didn’t.  I’m not sure how to.  That’s the hard part.  How do you plan for a two hour meltdown?  My only plan now is to avoid any situation that may cause Jackson angst.  Except for that 6 hour flight to Florida we have in a few days.  I know someday Jackson will be ok with new situations.  I don’t know when, but someday we will try new things without it being a dismal experience .  Maybe in a few years the misery of the cruise will fade and we can try it again.  All I know is that the minute we got home and put Jackson on the floor with his toys, he was the happiest little boy in Spokane.  And that is how I want him to be, happy. 

Happy Thanksgiving

Thanksgiving is always a time of reflection for me.  I like to think of all the things that happened the past year and take the time to appreciate how blessed I am.  This Thanksgiving is a tough one for me.  It’s the first time in my life I don’t have my Dad with me or just a phone call away on my favorite holiday.  I can’t even begin to tell you how hard that is for me.  But my Dad would tell me there wasn’t anything I could do about it and the best thing would be just to get on with my life.  So I will.  So here are the things I am thankful for this year:

1.       Kevin.  For some unknown reason this amazing man fell in love with me, married me, and now is forced to put up with me on a daily basis.  I have been in love with him for 9 years and he still gives me butterflies.  I don’t think I would have gotten through everything we have been through with Jackson without him by my side.  He’s so much stronger and better than me.  And even though I am a royal pain the ass sometimes, he stills loves me.  For that, I am immensely thankful.

2.       Jackson.  Who wouldn’t be thankful for this amazing, beautiful, funny little boy who has taught me so many lessons in the last 2 ½ years that I would have never learned with a “normal” child.  I’m thankful for his chubby cheeks that enable me to plant endless kisses on every day.  I’m thankful for his sweet cuddles, his adorable nose, his contagious laugh, and most of all the intense love he has allowed me to experience.

3.       Friends.  I put up a post about our friends a couple of weeks ago. You all know who you are.  I am soooooo thankful for you!

4.       Family.  Kevin, Jackson and I are blessed beyond words with our amazing families.  Their support, love and friendship make me thankful every day to have them in our lives.

5.       Home.  I am thankful that I have a home to come home to.  A home that has heat, food in the fridge, and love. 

6.       Darwin Rutledge.  My Dad.  I’m thankful I had him for 39 years.  I just wish I could have had him for 39 more.  I love you and miss you Dad.

Happy Thanksgiving to all of you and thanks for letting me share our lives with you! 

My Love/Hate Relationship with Hope

A few weeks ago Jackson said “dog” during speech therapy.  I think he was mimicking his speech therapist when he said it, which is huge.  That’s how kids start talking, through mimicking.  Yesterday at therapy he said “hi” to his physical therapist when she said it to him.  Today at therapy he said “ba” while playing with a ball and after his speech therapist had said it many times.  Driving home from therapy today I was thinking this over - are these just flukes?  I don’t think so.  Maybe if he had just said “dog” and not anything else I would believe it was a fluke.  But I really feel like maybe he is starting to talk a little.  And that scares me.  Not that he is starting to talk, that’s not scary, that’s amazing.  It’s that I am starting to hope for it.  The honest to god truth is that I resigned myself to believing he would never talk.  It’s hard to admit because I feel like a horrible mother for not believing my child could do something.  It’s true though.  I didn’t think he would talk.  So many kids with PMG don’t talk and somewhere along the road I put him in that group of kids.  I had given up hope.  Which, quite frankly, is easier for me to do than holding on to hope.  Holding on to hope is scary and potentially devastating.  I’ve been devastated enough lately (2010 sucks) and have been feeling kind of wounded.  So instead of hoping I just assume the worst.  I think one of those fancy shrinks would probably tell me what I’m doing is called self preservation.  I’m protecting myself from being hurt.  Perhaps.  But I’m also hurting myself because it makes me afraid to want things for Jackson.  How do I get myself out of this mess?  I truly don’t know.  You have any ideas for me?  I have a feeling this may be a battle and struggle for me for a long time.  I want so many things for my beautiful little boy, and I will do whatever it takes to give him the best shot at leading a happy, fulfilling life.  To do that I am going to need to believe he can do anything and support him endlessly.  And to do that, I am going to have to have a little hope.  Stupid hope.  I suppose this is something all moms go through, wanting to believe but afraid of being shut down.  As I sit here writing, I can feel it inching its way into my body now, hope that Jackson is going to talk and I will someday get to hear him say “Mommy” or even better “I love you”.  I guess the only thing to do is embrace it and take that leap.  So hello hope, please don’t let me down.  Please let Jackson talk.

Friends

I read a statistic today that says you will go through 396 friends in a lifetime but will have only 33 at any one time.  I disagree about the 33 part.  Most of us just have to log on to Facebook and we instantly have access to considerably more than 33 friends, right?  But the reason I really disagree is because of Jackson and his diagnosis.  I have had a lot of friends come and go in my life but have always felt that I was a pretty good judge of character and chose my friends well.  When we got Jackson’s diagnosis and the shock started wearing off, we began to tell more and more people about it.  I think at some point I actually sent out a mass email because there were just too many people to try and contact.  Honestly, I secretly wondered if some of our friends would “drop” us.  All of the sudden our lives were very different from all our friends.  Our priorities changed, our lifestyle changed, our amount of free time changed.  It wasn’t hard to see that the Klim’s were on a different track than a lot of our friends, with or without kids.  Plus I feared the pity parties that we might get.  I didn’t want people’s pity and I surely didn’t want the sorrowful looks I knew we were in store for.  So we told people and I just kind of hoped for the best.  I kind of figured that if we did have friends drop us, they weren’t really friends I wanted anyway.  Boy did I underestimate my friends!  I didn’t get any pity parties (not to my face anyway).  Instead I had friends cry with me, send supporting letters and emails, and phone calls to see if we needed anything.  Instead of dropping us our friends have embraced not only us, but more importantly Jackson.  The most surprising thing was we actually have made friends.  Those who were just acquaintances have become good friends and supporters.  Friends who I haven’t really kept in touch with have come out of the woodwork and renewed friendships.  I was right, I did and do have good taste in friends!  I can honestly say that I don’t think I would be as strong as I am now without all our friends.  The support and love I have felt over the last year or so has been a huge motivation to put away the bad moments and move forward.  Through something so sad and unfair, there have been extraordinary moments I never could have anticipated.    

So I know for a fact that there are more than 33 friends in our life right now, and I couldn’t be more thankful.  Our world would be such a lonely place without friends.  So thank you to all of our friends and family who have supported, loved and made our lives more richer.  And thank you to Jackson for making me realize it. 

Feeling Good

Today we met with our neurologist here in Spokane and I left his office feeling good for a change! 

Let me first tell you this - when we came home from Seattle I called his office to schedule an appointment and they said that he couldn’t see us for 6 weeks because of his busy schedule.  That didn’t fly with me (being the pushy mom I am) so I asked to talk to one of the nurses, who then spoke with Dr. Reggin, who got us in within a couple of weeks.  See – more advocacy paying off! 

The purpose of the appointment was to discuss taking a more aggressive stand against Jackson’s seizures.  To me, I thought it would mean that we would be discussing and adding some medications to Jackson’s regime.  In fact, Dr. Reggin did increase the dosage of the medication Jackson is on currently.  We will see how that goes in the next couple of weeks and if there are any changes.  If it doesn’t help, then we will be adding a different medication.  But what I wasn’t expecting was that we got a plan, a plan that I am very happy about.  After reading the notes that Dr. Dobyn’s (the doctor we saw in Seattle) sent him, Dr. Reggin wants to not just treat the seizures with medication, but he wants to figure out why the seizures are happening.  There has always been that question of why there is seizure activity on the left side of Jackson’s brain.  The left side is the “good” side according to the MRI.  Just as Dr. Dobyn’s was perplexed so has Dr. Reggin been.  The plan is that Dr. Reggin is going to pull all the EEG information and his notes and records and send them to the Epilepsy Center at Seattle Children’s.  He will then conference with the doctors at the Epilepsy Center and try to figure out why the seizures are happening and what we should be doing to solve that mystery.  Finally some progress and a feeling of getting some answers!  The process of doing all this will take 4-6 weeks so we should hear either right before or after Christmas what the doctors discussed and came up with.  I can handle that.  Dr. Reggin explained a couple of different tests that we may have done over in Seattle that would give us a better picture of what is happening in Jackson’s brain.  Which I would like to see done, the more knowledge we have the better.  He also mentioned a surgical procedure that Dr. Dobyn’s also said might help that would entail separating the two side of the brain from each other.  That procedure is called a corpus callostomy.  I have actually read some medical studies about this procedure and there has been some success in stopping the seizures.  Nothing is 100% guarantee and there are always side effects but it is something that may be in Jackson’s future.  The idea of brain surgery scares the crap out of me and makes me sick to my stomach just thinking about it.  But I also have to think of Jackson and what is best for him.  If brain surgery would give him a better chance, Momma’s going to have to suck it up.  So there you have it.  We have a plan, we have some good doctors on our side, and I feel that we are finally moving forward on really getting Jackson some help.  I didn’t really realize until today that I had had this feeling of just kind of being in limbo.  I’ve been watching Jackson have seizures now for 17 months.  All this time we have just been giving medicine, changing medicine, giving more medicine and hoping for the best.  Now we are going somewhere and I feel excited and happy that we are moving.  I know I have to keep in mind that after all these tests and doctor visits, in the end we just may not be able to do anything to get rid of his seizures.  That would suck but I would at least know we gave it our all.  Up until now I don’t think we have been and as a mom that bothers me.  I feel like we should have done every test in the world the first day Jackson had a seizure.  It’s a process though.  I understand that.  Jackson may have a lot of hospital and doctors appointments in the months ahead and even though he may not understand it (or like it), someday I hope I will be able to explain it to him and he will know we gave it our all for him.

On a side note, yesterday at therapy Jackson’s speech therapist was showing Jackson a book about dogs.  She pointed to a dog and said “dog”.  Jackson then said “dog”.  At least it sounded just like it.  His OT was there and heard it too.  Maybe it was just a fluke but I really think he said dog.  I told Kevin about it when he got home and he kept trying to get Jackson to say it again, which he never did.  Wishful thinking maybe, but whatever it was it was music to my ears. 

Medications and Advocacy

Before I had Jackson I was one of those people who believed that medication was a good thing.  If I was sick I would take some kind of medicine to feel better or antibiotics to heal whatever ailment I had.  I was never one of those people who practiced or really fell for the holistic medicine approach.  Now that I have a little boy who, unfortunately, is going to have a life long relationship with medication, I find my attitude toward medication changing.  When Jackson was first diagnosed we went to see the neurologist and he prescribed medication for the seizures.  I just figured the medication would stop the seizures and Jackson would be ok.  When that didn’t happen it was kind of shocking to me.  It was the first time I really had to face a situation where there was a chance medication wasn’t going to work.  I soon realized that something that has always been so simple for me wasn’t going to necessarily work for Jackson.  Now that Jackson is on his 3^rd seizure medication, I find myself having mixed feelings about medicine.  Lately I’ve been looking into alternatives to medication to help with the seizures.  At this point I’m willing to try anything reasonable to help Jackson.  If we can find a concoction of medicine that would stop these stupid seizures I am all for it.  However, what we’ve seen in the past is an alteration in Jackson’s behavior and personality with certain medications.  The medicine he is on now, Topomax, hasn’t had an effect on his personality (that we’ve noticed), and it is also helping a little with the seizures.  But last week when we were in Seattle, the doctor told us we need to get more aggressive in treating Jackson’s seizures.  Part of the desperation is that the seizures are causing more damage to Jackson’s brain and his ability to develop.  While I agree with the doctor, I’m fearful of what all these medications will do to Jackson.  I hate to think of the “cocktails” that are in his future.  I also wonder what kind of long term effects these medications could have on Jackson’s body.  We meet with the neurologist this week and will hopefully come up with a good plan to battle the seizures.  I just hope we won’t have to make a decision between medicine that could potentially stop the seizures or medication that may not stop the seizures but would give Jackson the ability to function regularly in day to day life. 

In all of this, I’m finding my role as a mother changing.  No longer do I feel that I should just listen and trust the doctors.  That old sayings “mother knows best” and “mother’s intuition” really kick in when you have to watch your child have a seizure or vomit all day.  Your role as mother turns into one of an advocate.  I think all mothers are advocates for their children, but when your child has health issues you can find yourself spending more time as an advocate than as a mom.  In the past month I have decided to stop giving Jackson medications that the doctors prescribed because (1) I didn’t think it was helping and (2) it was causing adverse affects.  I did this without consulting the doctors.  Maybe that isn’t the best way to go about it, but I live with my son and see what he is like every day and because of that I have a better perspective than any doctor out there. 

Jackson’s other main issue aside from the seizures is his spitting/throwing up.  Some days he hardly does it, other days it is a constant thing and he will go through 3-4 shirts, 5 bibs and 7 towels a day.  He has had a few tests done at the hospital – 2 gastric emptying, upper GI, lung aspiration and a scope of the GI tract.  Both of his gastric emptying tests showed that he is having prolonged digestion but everything looked normal during the scope so we don’t know why he is throwing up so much.  After the first gastric emptying and upper GI tests the GI doctor put him on the medicine called Reglan.  This was a medicine the doctor had tried to put him on once before but couldn’t because it interacted with his seizure medication at the time.  But then we switched seizure medication so we put him on the Reglan.  Jackson went through two bottles of the Reglan and we were on our 3^rd bottle when I finally admitted to myself that this medicine just wasn’t working, and while he was on it, Jackson’s seizures had gotten worse.  All of the sudden it hit me that just because the doctor told us to give the medicine to him didn’t mean we had to.  I was his mother and I should be protecting him, not following doctor’s orders.  So one day I just stopped giving it to him.  Since then I really feel that his seizures have gotten better and his spitting up hasn’t really changed.   A couple of weeks ago we did the second gastric emptying and this time the doctor prescribed Erythromycin.  It seemed like it was working for a couple of days then Jackson starting puking again.  I still gave it to him for a few days but this weekend Jackson got a diaper rash, which the pharmacist told me might be a side effect.  Jackson’s never had a diaper rash before so I was surprised.  Needless to say I stopped giving him the medicine right away.  The diaper rash is way more uncomfortable and painful for him then the throwing up.  I’m done giving him medicines for the throwing up.  I am tired of putting him through additional medical issues.  Jackson isn’t able to care for himself and he needs someone to stand up for him and say “enough is enough”.  That’s my job as Jackson’s mom and advocate. 

Healing

When Jackson was first diagnosed I searched high and low for books by special needs parents and their experiences.  I found a lot of good ones but mostly the stories were those where the parents just lived in this kind of grieving stage and just couldn’t move on.  Of course, a lot of these parents were dealing with things I haven’t (thankfully) had to deal with.  Numerous hospital stays, scary medical emergencies, g-tubes, breathing tubes, etc.  So early on I decided I was going to write a book about our journey.  One that would truly capture the highs and lows of raising a special needs kiddo.  But between all the appointments, work and life my book kind of faltered.  That’s when I got the idea for a blog a few weeks ago.  I figured it would motivate me to write and I could share our experiences with our friends and family and anyone else who was interested.  It definitely has motivated me to write.  Now that I know people are reading it, I can’t wait to share the stories of Jackson and our trials and joys.  I didn’t, however, realize how healing it was going to be for me.  My last post was a difficult one.  It took me all day to write and a lot of tears to finish.  Once I posted it, walked away from the computer, and went back to my life I realized a couple of hours later that I felt better.  I had been sad and tearful for the 4 days prior and dealing with emotional stuff that really sucked.  Posting those feelings made my shoulders feel lighter.  Now I’m realizing the blog is not just my way of sharing, it's a way to help me get through the tough times and a place I can just really say how I feel.  Being a parent is so much harder than anyone ever tells you.  Being a parent of special needs kid adds a little spice to that parent pot.  I am really glad that I have an avenue to share our story with everyone.  I am even happier that people are reading it and enjoying it.  I want other parents to see that in many ways we have the same issues, but there are additional and difficult issues that come with special needs kids.  Now when you see those special kids at Target or the grocery store maybe you will have a better understanding of what those parents are going through and you won’t just feel sorry for them (like I used to).  My blog is healing me little by little and I hope it is instilling compassion and love for everyone who reads it.  On that note, I found this little story in a book a couple of weeks ago and it really touched me.  I’m not a very religious person and I definitely have my issues with “God”, but this was kind of cool and I want to share it.  It’s called “God does work in mysterious ways” and it is written by the ever popular Erma Brombeck (I don’t know the year it was written).  Enjoy:

                Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.  This year, nearly 100,000 women will become mothers of handicapped children.  Did you ever wonder how mothers of handicapped children are chosen?

                Somehow I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation.  As He observes, He instructs His angels to make notes in a giant ledger. 

                “Armstrong, Beth, son, patron saint, Matthew.  Forrest, Marjorie, daughter, patron saint, Cecilia.”

                “Rutledge, Carrie, twins, patron saint… give her Gerard.  He’s used to profanity.”

                Finally, He passes a name to an angel and smiles, “Give her a handicapped child.”

                The angel is curious. “Why this one, God? She’s so happy.”

                “Exactly,” smiles God.  “Could I give a handicapped child a mother who does not know laughter?  That would be cruel.”

                “But has she patience?” asks the angel.

                “I don’t want her to have too much patience or she will drown in a sea of self-pity and despair.  Once the shock and resentment wears off, she’ll handle it.”

                “I watched her today.  She has that feeling of self and independence in a mother.  You see, the child I’m going to give her has his own world.  She has to make it live in her world and that’s not going to be easy.”

                “But Lord, I don’t think she even believes in you.”

                God smiles.  “No matter.  I can fix that.  This one is perfect.  She has just enough selfishness.”

                The Angel gasps, “Selfishness?  Is that a virtue?”

                God nods.  “If she can’t separate herself from her child occasionally, she’ll never survive.  Yes, here is a woman whom I will bless with a child less than perfect.  She doesn’t realize it yet, but she is to be envied.  She will never take for granted a ‘spoken word’.  She will never consider a ‘step’ ordinary.  When her child says ‘Momma’ for the first time she will be present at a miracle and know it!  When she describes a tree or a sunset to her blind child, she will see it as a few people ever see my creations.

                “I will permit her to see clearly the things I see... ignorance, cruelty, prejudice… and allow her to rise above them all.  She will never be alone, I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

                “And what about her patron saint?” asks the angel, his pen poised in mid-air.

                God smiles.  “A mirror will suffice.”

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.