Saying Goodbye

“The purpose of morality is to teach you, not to suffer and die, but to enjoy yourself and live.”  - Ayn Rand

The day after we got home from Seattle we jumped on a plane and headed to Denver to say our final goodbyes to my stepmom Sandy who lost her battle with ALS/Lou Gehrig’s disease in June.  Sandy didn’t really want any type of service but for those of us left behind I think we needed it.  We needed to say goodbye to her and honor her life so we could have some closure.  I was dreading our trip to Denver.  I just didn’t want to go.  I didn’t want to say goodbye and I didn’t want to think about it.  But I’m not 5 anymore so stomping my feet and pouting while yelling “I don’t want to!” just doesn’t work for me anymore.  I had to get on that plane.  So off we flew back to my home state of Colorado.  We had a very nice service for her and I was able to deliver a eulogy.  The next day my family and I headed back to my hometown of Grand Lake, Colorado to spread her ashes.  Now that all is said and done I am glad we did it.  I finally feel like I have said goodbye to Sandy and that I can move on living my life in a world without any parents.  I am glad she is no longer suffering in the shell of a body she couldn’t control.  I feel a sense of peace when I think of her and Dad being reunited.  I miss her, I miss my Dad and I miss my Mom.  I think we all know that at some point in our lives we will lose our parents, it’s supposed to be the natural order of things.  But I don’t think we are ever really ready for it when it happens.  I feel too young to have lost all my parents.  I feel robbed of about 20 years.  I feel a huge emptiness in my world now.  I am sure it will always be like that.  Goodbyes are never easy, but whether we like it or not, sometimes our best relationships end with a goodbye.   

Here is the text of my eulogy to Sandy: 

I was 12 when my Dad married Sandy.  The truth was I was not too happy about having a step-mom.  My Dad and I had been on our own for 5 years and as far as I was concerned, we were just fine.  But Sandy didn’t seem so bad, and it made my Dad happy to have a wife.

Last summer one of Sandy’s sisters commented to Sandy and I about how close we had always been.  Sandy and I turned to each other and laughed.  It wasn’t always that way.  We had a tough time getting along.  I was jealous of her, she was jealous of me.  Dad was stuck between two fighting girls.  Somehow we managed through and in the end Sandy and I were close.  She was my Mom. 

When I think back to my nearly 30 year relationship with Sandy I realize she gave me a lot of things.  There’s not enough time to talk about all of them but I want to mention a couple.

The best thing Sandy gave me was a family.  Even though my Dad and I were just fine on our own, we were lonely.  It’s hard to celebrate major holidays when it is just two of you.  There wasn’t a lot of celebration.  Then Dad married Sandy and we inherited the Leonard clan.  The crazy pyramid building Leonard clan.  I’ll never forget my first Thanksgiving down in Monte Vista with Sandy’s family.  To go from 2 people to like 20 was quite a welcome change.  There was lots of laughter, love and liquor.  It made me so happy, and I know it made Dad happy too, to finally have a family.  The Leonard family became my family thanks to Sandy.  For that, I will be forever grateful to her.

Another thing Sandy gave me was food.  Yes I said food.  No one will ever understand the horror of my Dad’s cooking.  I was so happy to finally have food that didn’t come in an aluminum tray or from a restaurant.  Sandy was a great cook.  My Dad and I were in food heaven every time we sat down at the table.  I can only remember one time that Sandy made something that wasn’t edible.  She used to make these wonderful chewy, chocolate brownies.  I would always ask her to make them for any gathering we had.  This one particular time my sister was having a party and Sandy made her famous brownies.  I of course had to cut the brownies and have one right away.  I took a bite and nearly threw up.  Turns out Sandy used salt instead of sugar!  How you get those two mixed up I don’t know.  Sandy in her typical fashion threw her hands up in the air, shrugged her shoulders and laughed. 

Perhaps the most important thing Sandy gave me was a Mom.  She was there every day for me.   She cooked for me.  She shopped for me.  She gave me advice.  She encouraged me.  Sandy did all those “mom” things for me.  I didn’t realize until I left home for college how important Sandy had been in raising me.  Who I am today is a reflection of not only my Dad, but Sandy.  The day Jackson was born Dad and Sandy were there in the hospital.  They were there when we brought Jackson home from the hospital.  And they both never faltered when we got the horrible news that Jackson wasn’t going to be who we thought he would be.  Sandy said to me afterward that it didn’t matter, that she would still love Jackson with all her heart.  And she did.  Just like a supportive Mom and Grandma would. 

If you knew my Dad and Sandy you knew that their MO was arguing and bantering back and forth.  When Sandy started showing signs of slurring her words we were all concerned.  My Dad kept telling her there was something wrong with her and Sandy would yell at him that she was fine.  They were quite entertaining right before my Dad died because my Dad couldn’t hear and Sandy couldn’t speak clearly.  My Dad would yell “I can’t understand a damn thing you are saying woman” and Sandy would yell back “You would if you would wear your hearing aids we spent a fortune on”.   Then Sandy would break out in her repeated and memorized lecture about how much money they spent on the hearing aids and how Dad wouldn’t even wear the damn things.  When Mike called to tell me Sandy was gone I cried for a long time.  But then I had this vision of them reuniting in heaven, or wherever it is we go when we die.  It goes like this:  Dad’s standing there waiting for her, Sandy arrives, they hug and Dad says “I’ve missed you Honey”, Sandy says “I’ve missed you too”.  He puts his arm around her and they start to walk.  Then Dad in his insatiable desire to be right all the time says in his Mr. Know it all voice “I told you something was wrong with you.”  Sandy stops and hits him on the arm and says “Oh shut up Darwin!”  And just like that things are right back to the way they should be. 

Hospital Rant!

Last week we headed over to Seattle Children’s Hospital for Jackson’s 6 month eye exam.  Because of the seizure medication he takes (Sabril/Vigabatrin) he has to have an ERG every six months.  Our local children’s hospital does not have the capability to do this test so we drive 4 hours to the other side of the state to do it.  The ERG tests the nerves of Jackson’s eyes.  It entails putting him under anesthesia and is only about a 30 minute procedure.  The purpose is to test whether or not Jackson has any permanent peripheral vision loss due to the medication.

Sabril has been Jackson’s miracle drug.  Before we put him on the drug Kevin and I had to make the difficult decision between risking vision loss and taking a chance that this medication might stop the seizures that plagued our little one.  It was one of those tough decisions that parents should not have to make, but the kind that many parents of special needs kiddos have to make daily.  Jackson’s seizures stopped within 4 days of taking the medication.  After 1 year and 5 months of watching our son seize, he was finally free.  The elation I feel about this is not something I can write about.  While he has had maybe 4 seizures since being on this drug that is nothing compared to the 10-15 he was having daily.  Every day Jackson doesn’t have a seizure is a miracle day to me.  It gives him a better chance at learning and progressing and that isn’t something you can put a price on. 

Having said that, it was made quite clear to us by the doctor at Seattle Children’s Hospital that the seizure medication has done damage to Jackson’s peripheral vision.  While I knew this was the risk, I still felt like the doctor threw a baseball into my chest when he told us.  The damage isn’t catastrophic.  Jackson isn’t blind peripherally.  He has about 60% of what a normal person has.  Things are more difficult for him to see peripherally but his forward looking vision is still good.  The good news is that it won’t get any worse.  The bad news is that it won’t ever get better, the damage is done.  We took the risk and now Jackson will have to pay the price.  I feel extraordinarily guilty.  But I am also quite aware that the risk was worth it.  Being in this position as a parent is ridiculous, infuriating, heartbreaking, and makes me want to throw dishes at the wall while screaming curse words.  This is definitely not what I thought parenting would be for me.  But it is.  If I could call my Dad and ask for his advice I know exactly what he would say – “Well there isn’t anything you can do about it now Honey.  You just got to move on with your life.” So that is what I have to do.  Move on and celebrate every day that the seizures stay away, far away. 

Now on to my Seattle Children’s Hospital rant!  When I called to schedule this procedure I explained to the scheduler that Jackson has special needs, won’t be able to understand why he can’t eat (you can’t eat 12 hours prior to this procedure) and is absolutely obsessed with food.  Therefore, please schedule us as early as possible.  The time they scheduled us to arrive – 10:15 a.m.!  That is not as early as possible.  So we tried to sleep deprive Jackson the day and night before thinking he might sleep in long enough for us to just get up and go to the hospital.  When did Jackson wake up?  6:00 a.m.  Yup.  Shortly after waking up the crying/screaming/why aren’t you feeding me yells began.  So we quickly packed up and jumped into our car and drove around Seattle for a couple of hours trying to calm him down.  Driving around Seattle in rush hour is about as much fun as walking on glass in your bare feet.  We got to the hospital and checked in right at 10:15.  We waited maybe 10 minutes and they took us back to the pre-op area.  The nurse quickly saw us and got all the information she needed.  This whole time Jackson is screaming with little tears running out of his eyes.  I asked the nurse how much longer.  Her response – “The anesthesiologist will be in in about an hour.”  Say what?!  I actually kind of laughed because I thought she was kidding.  But she wasn’t.  She explained to us that Jackson’s procedure was scheduled for 11:30 a.m.  I was infuriated.  Jackson is screaming, and at this point it is just plain cruel because he has no idea what is going on and all he is thinking is “I am hungry, why aren’t Mama and Papa giving me any food.”  After making it clear to the nurse that we were VERY unhappy we took Jackson and started walking around the hospital for an hour.  We went back to the pre-op room just in time for the anesthesiologist and doctor to arrive.  We also let them know we weren’t happy.  Off Jackson went for his procedure and off Kevin and I went to eat.  We were also starving!  After meeting with the doctor for the results of the test they told us to wait in the waiting room and they would page us to come back and be with Jackson while he woke up from the anesthesia.  So we waited.  And waited.  And waited.  I finally had enough and told Kevin I was done waiting and that I was going to go get our boy.  The receptionist at the surgery desk didn’t seem too happy when I told her I was going to go back there and find my son.  She was like “you can’t go back there” and I was like “watch me”.  After a couple of calls and heavy sighs, like it was such an inconvenience, she said we could go back to the post op room.  As if I needed her permission.  We finally got our boy back and after letting him wake up for a while we were on the road home.  I couldn’t get out of that hospital fast enough. 

Hospital administrators who sit at their desks making up ridiculous procedures that benefit only the hospital should have to spend a day in that pre-op section and see what they are doing to the children they serve.  Jackson wasn’t the only one crying.  We weren’t the only annoyed and frazzled parents.  When it is a hospital specifically for children, their rights and needs should come first.  Our health care system is confined to rules, procedures and legalities.  Even the littlest patients are falling victim to this absurd system.  Next time we go to Seattle Children’s I am going to give them a sheet with MY rules for how my son will be treated and I will throw their rules in the garbage.  We will see how they like that.

They always say that times changes things, but you actually have to change them yourself." — Andy Warhol

Kid Update

It seems my posts lately have mostly been about me so it is about time I talked about my adorable, funny, goofy kid. 

Jackson’s big achievement this summer has been sitting up.  On March 13^th he sat up by himself for the first time.  He did it again a few times over the next few months.  But in the last month something has clicked with him and he is constantly sitting up by himself.  It’s a beautiful sight to see.  Not only is he able to sit up by himself but he is also rotating while sitting.  If he is facing away from something he wants to see he twists his torso, moves his legs and swivels around.  It is awesome!  It has given him some independence and confidence too.  His frequent sitting up has also increased his ability to sit for longer periods of time.  He used to only be able to sit up for a couple of minutes.  Now he is sitting up for as long as 15 minutes.  When Jackson starts to fall back or sideways he has learned to reach his arm out to stop himself.  All of these skills he has acquired over the last month or so have been a small miracle to me.  It has taken 4 years to see my son sit himself up, words can’t express the joy I feel when I watch him do it.  I just can’t get enough of it!

In May Jackson had a seizure.  Then in June he had another one.  Last weekend we were swimming in the lake when he had another seizure.  These new seizures are different from his old ones.  His body goes limp, he seems unreachable, he dry heaves, he has tiny little twitches, they last 5-10 minutes, he gets overheated and turns red, I can’t feel his heartbeat, and when they are done he is exhausted and falls right to sleep.  They scare the crap out of me.  The one last weekend prompted a call to the neurologist and an appointment with him this week.  His neurologist says they sound like Complex Partial Seizures.  The seizure medication he is on now also treats these types of seizures.  He is on a very low dose of the medication right now so we have room to increase his dosage, which is what the neurologist suggested.  Also, the last time we saw his neurologist was back in March.  Since then he has grown 4 inches and gained 6 pounds.  It seems he has gone through a big growth spurt.  Jackson will have an EEG at the end of this month to see what is going on in that cute head of his.  In the meantime I just hope the seizures stay away.  The last year has been a dream having those seizures gone.  I know that fighting seizures is something Jackson will do his whole life, but seeing who he is and the progress he makes when the seizures aren’t happening is wonderful and something I want to continue to see every day.  Fingers crossed!

Next week we head back to Seattle Children’s for another ERG (eye exam).  We have to do this every 6 months to test if there is any damage to his eyes from the seizure medication he is on.  Not looking forward to it as they have to put him under anesthesia to do the exam and I hate that.  But it has to be done and if this is the price to pay for his relative seizure free life then so be it. 

Communication with Jackson continues to be a battle.  He knows a little sign language – eat, more, please.  I am trying to teach him a new sign right now for “up”.  That way if he wants us to pick him up then he can sign it.  Signs are hard because he only really uses the right arm and hand.  The left arm still doesn’t work very well and the left hand is better but not real useable.  Trying to come up with one hand/arm signs is tricky.  He does have a couple of words he uses – Mama and Papa.  Papa is just coming around, meaning Jackson is just now starting to use it.  He has said it a handful of times as of now but I am hopeful that soon he will be saying Papa as much as Mama.  I just love hearing Mama come out of his mouth! 

Jackson continues to throw his fits, although I don’t think they are as numerous as before we went to Yellowstone on vacation.  I have been trying to keep him busy and on the go.  It is a lot of work!  The other day I saw a couple of friends post on Facebook about how sad they are that school is starting.  I thought to myself “I can’t wait for school to start!”  My kid needs out of the house and to be around other little kids.  And Mama needs a little down time from entertaining.  Bring on the school!  We have had a lot of fun though on our quest to keep busy.  Lots of trips to the lake and pools, Art on the Green, short and long road trips, walking trails, anything I can find that will make my kid happy. 

Lots of people have asked about Jackson and his puppy.  Jackson and Loki had love at first sight.  Then Jackson went through “I am sick of this puppy biting on my feet, hands and arms” phase.  While at the same time Loki went through “Oh I just love biting on Jackson’s tasty little feet, hands and arms” phase.  They didn’t mesh during this period.  Luckily Loki’s biting phase is coming to an end and the kid and dog are back to loving one another.  Jackson loves Loki’s kisses, he thinks they are hilarious.  He also loves pulling on Loki’s ears, tail and anything he can get a hold of as Loki walks by.  They are particularly cute when riding in the car together.  Loki lies across the backseat and has his head on Jackson’s lap while Jackson pats/pets Loki’s head as we drive around.  They are buddies.  The only downside is that Loki has grown, really grown, but is still under the assumption that he is a tiny little puppy.  He still tries to sit on Jackson’s lap and needless to say that is a recipe for disaster.  The best is when Jackson is rolling around and rolls onto his tummy.  Loki runs over and lies across his back, pinning Jackson down and squashing him.  Jackson yells in protest and Loki has this big grin on his face like “Oh my boy and I are having the best time.”  Loki never understands why I pull him off Jackson.  Jackson is forever grateful I did. 

That is where the kid is at.  Growing like a weed, sitting up on his own, hanging out with his puppy, and throwing fits until Mama finds something to entertain him.  Jackson can be exhausting but fun.  Sometimes I find it hard to find happiness in my life when I am so caught up in trying to make him happy.  I think I just need to remember that “Happiness is a place between too much and too little.” -Finnish proverb