Spoon River Anthology

The other day one of my high school students emailed me asking for the name of a book I had loaned her in school.  The book was Spoon River Anthology by Edgar Lee Masters.  The book is an odd one.  It is a collection of poems that are left on the headstones of the residents of a small town.  They intertwine and tell the story of the town.  Kind of cool, but kind of weird.  My favorite poem of all time is in that book and as I dug the book out to email her I knew right where to go to read that poem.  As I read it, I realized whenever I read this poem it always seems to pertain to that point in my life.  And it did again.  I think it is the generalities of fear we all have in our lives while also looking for something more.  Whether it pertains to you or not, I hope you enjoy it.

George Gray

I have studied many times

The marble which was chiseled for me –

A boat with a furled sail at rest in a harbor.

In truth it pictures not my destination

But my life.

For love was offered me and I shrank from its disillusionment;

Sorrow knocked at my door, but I was afraid;

Ambition called to me, but I dreaded the chances.

Yet all the while I hungered for meaning in my life.

And now I know that we must lift the sail

And catch the winds of destiny

Wherever they drive the boat.

To put meaning in one’s life may end in madness,

But life without meaning is the torture

Of restlessness and vague desire –

It is a boat longing for the sea and yet afraid.

Happy Birthday Jackson

Jackson turned 3 years old today.  It's hard to believe that it has been 3 years already.  He's the best thing that ever happened to me (next to his Dad of course).  Jackson has taught me more in the short 3 years of his life than I probably learned in the 37 prior to his arrival.  He's not the child I thought I was having, and I am not the Mom I thought I would be.  Life doesn't always turn out the way you think it might.  While we have some sad, tough days in our past, and some that await us in our future, I know I will handle them because I have Jackson by my side.  With my little boy next to me, I feel like I can do anything.  I love you Jackson Edward Darwin Klim.  More than you will probably ever know.  Happy Birthday my little monkey!

Changes

It has been another crazy week for me and one that had a lot of something I don’t like – change.  I don’t deal well with change.  Even if it is good change, I don’t like it.  I’m a change resistor.  When Monday, Tuesday and Wednesday this week brought major changes into my life, Thursday was my day of just barely hanging on. 

Monday:

We had an appointment with Jackson’s neurologist on Monday.  We were meeting to discuss some of the things that came out of the Seattle Children’s Hospital visit.  I had gotten a call on Friday from the nurse coordinator and she gave me a little bit of information that came out of the meeting to review the results of Jackson’s tests.  The gist of it is that Jackson is not a candidate for brain surgery.  His seizure activity is generalized, meaning it is coming from all over the brain and not just one area.  So there is no way to go in and “fix” the bad area causing the seizures.  I knew this was probably going to be the result but I still had a glimmer of hope that they might discover a part of his brain that could be “fixed”.  Hopes crushed, again.  I had the weekend to adjust to that news and was anxious to hear what Dr. Reggin had to say on Monday.  Unfortunately, he didn’t have the MRI or PET scan results.  But he had spoken with the lead doctor over in Seattle and had some options for us.  None that were good.  Basically our options were (1) new medications and/or (2) Vagus Nerve Stimulation.  We are going with both.  As Kevin reminded me, we have to get aggressive.  We have tried numerous things to get Jackson’s seizures and nothing has worked.  It’s time to stop dilly dallying around and take some chances for Jackson’s sake.  We are adding a new seizure medication called Sabril.  It’s not without risks.  Sabril has been known to cause permanent vision loss so Jackson will have to have regular eye exams.  The vision loss hasn’t shown up in patients until they have been taking the medication for at least 6 months.  We agreed to try Sabril for two months.  After that amount of time we will know if works.  If it does work and his seizures stop then we will have a choice to make.  An incredibly difficult choice.  Do we risk vision loss or risk the seizures coming back?  At this point I should mention Dr. Reggin and the Seattle doctors have clarified the type of seizures Jackson is having.  They are infantile spasms.  Do some research on them and you will find out these are the worst kind of seizures in children.  They can cause major damage to the brain and lead to significant mental retardation.  These are the kind of seizures that require aggressiveness.  In addition to the new medication we are going to move forward with the Vagus Nerve Stimulation.  I still need to do some research on this for my own comfort level though.  The VNS is a small implantation, kind of like a pacemaker, under the skin in the chest and in the neck.  It is programmed to stimulate the vagus nerve, which is in the neck, to reduce the frequency of seizures.  It works in about 50% of children.  It seems to be a fairly simple procedure at the hospital and would be turned on slowly about two weeks after surgery.  It may take a while to see any change in seizures.  Both of these things are a big step and a little scary to me.  But I have to get to a point as a mother where I am able to put my fears aside and do the things I am uncomfortable with in an effort to give my son a better life. 

Tuesday:

Tuesday was Jackson’s last day at the Guild School.  It was crushing.  The Guild School and Jackson’s therapists have become a huge part of our life.  To leave a place where my whole family is comfortable and has gotten such great care and support is indescribable.  I know on some level Jackson is going to miss his “girls” and wonder where they went.  I will still be involved with the school, and think I always will, by being on the Board of Directors.  The Guild School is one of those places you just never stop supporting.  Even if your child isn’t going there anymore, there are other children like your child going there and getting the services they need.  That kind of thing is in your heart, you just have to stay involved for all the little kids out there that need that extra help.  Plus I have told the school’s director that someday I will work there.  And I will, so get ready for me Dick!

Wednesday:

Wednesday we toured Jackson’s new school (Roosevelt Elementary) and had our first IEP meeting.  The tour did not go as I thought it would.  Quite frankly I was scared at what I saw.  The preschool classroom Jackson will be in has more children in it than we were told and they were all higher functioning than we were told.  As we observed circle time it was apparent that Jackson cannot, and isn’t anywhere near being able to, do the things his peers are able to do.  They are all walking, mostly talking, answering questions, etc., etc.  Then we watched the physical therapy time and we were able to observe a child in another classroom who is more at Jackson’s level.  That went better and we really liked the ideas the physical therapist had for addressing Jackson’s specific needs.  The reasoning for putting Jackson in a classroom with other children who are functioning on a much higher level was twofold.  One was that by having Jackson observe other students who are higher functioning and seeing how they behave and communication, it will motivate him to progress.  The other (and I think the main reason) was that the classrooms with kids who function around the same level as Jackson are all full.  The IEP meeting went fairly well and put some of my concerns at ease.  I am still fairly nervous and scared about this big change and how Jackson is going to deal with it.  It is going to be a lot for him to go from 1.5 hour therapy twice a week to school 4 days a week, 2.5 hours a day.  Hopefully it will all work out and if it doesn’t, we only have about a month left before school is out. 

As I said, change is upon us, some already here and some coming up in the very near future.  New medication, a new surgery, leaving a very loved place and entering a new unknown one is a lot to adjust to in the span of 3 days.  This week has reminded me of a quote/saying my mom lived by.  She was a recovering alcoholic and this was her AA mantra.  I’m not a religious person, but it seems fitting. 

God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

Nervous breakdowns, Molina Healthcare and IPad’s

Whew!  Just writing the title of this post wears me out.  It’s been one of those weeks where it seems there is something around every corner ready to smack me in the face. 

Monday I received a letter from Molina Healthcare denying our request for a bed for Jackson, for the second time.  For those of you who know Jackson you know he is a pretty big kid.  He is turning 3 in a couple of weeks and he is still sleeping in his crib.  He continually gets his arms and legs stuck in the rails/slats and hits his head on them too.  Also getting him in and out of the crib is killing my back.  So a few months ago I started researching beds for special needs kids and came across the SleepSafe bed.  I looked at a few others but this bed seemed to fit Jackson and his needs perfectly.  It has 4 solid sides with no rails/slats, we can get padding around the sides so when Jackson has a seizure he won’t hit any body parts against a hard side, a fold down side so I can easily lift him out of the bed, and it is twin sized so Jackson will have room to grow.  Jackson would be safe in this bed when he sleeps.  I showed it to his physical therapist and she started the process of ordering it.  Then Molina denied it and suggested he would be better off in a hospital bed with side rails.  What a joke!  They might as well send us a box of poison to feed Jackson, he would easily be strangled to death in that bed.  So after two days of desperation and thoughts of “What are we going to do?” I decided to appeal their decision.  I have 90 days to get letters from his doctors (which is going to be a feat), write my appeal letter and provide documentation on why a hospital bed is not a better choice than the SleepSafe bed.  I’m also supposed to provide another option than the SleepSafe bed that is more cost effective.  It pisses me off that I have to fight to get my son a bed, but it pisses me off more that I have to go through so much work to do so.  It’s bad enough that our son has this rare brain malformation, seizures and delayed development.  For insurance companies to make us go through this lengthy process and essentially beg for a bed for our son is humiliating.  How I would love to be able to walk into a bed store and buy Jackson a bed and not worry that he wouldn’t be safe while he slept.  It’s something most parents just take for granted. 

Tuesday our IPad crashed.  I loved our IPad but it often wouldn’t let me download Apps and it didn’t perform certain actions that it was supposed to.  Then Tuesday I was trying to download a game for Jackson and it just froze up.  This dilemma of my crazy week actually ended up being a highlight.  After freaking out and imagining our money down the drain, I made an appointment at the Apple Store downtown.  I had never been to the store before and had no idea what to expect.  I was pleasantly surprised!  After listening to my description of the various problems we have had with the IPad and them not being able to run diagnostics on it, the technician told me not to worry, they would just give me a new one.  What?!  A new IPad?  I wondered to myself “Great, how much is this going to cost me?”  It ended up being nothing, nada, zip.  The guy handed me a new IPad, had me sign a piece of a paper and the crises was over.  Thank you Apple!  Turns out our IPad was bad, the new one runs beautifully and I can do more than I ever imagined on it.  Our broken IPad was great, our new IPad is fantastical!

Tuesday also just happened to be the day of my nervous breakdown.  Ok maybe “nervous breakdown” is a little over the top but it was definitely some kind of breakdown.  As most of you know Jackson was over at Seattle Children’s Hospital for 3 days back in March for some tests.  The tests were to determine if Jackson was a candidate for surgery to reduce or stop his seizures.  After we left, the doctors and specialists were supposed to meet to discuss the results of the test and to determine if he was a candidate.  They were either going to meet the week after we left or the week after that.  Well two weeks went by and I still hadn’t heard anything so I called the nurse coordinator.  She informed me they hadn’t met yet but were going to meet on Monday, April 11^th and she would call me first thing Tuesday.  By this time I was going crazy.  Waiting to hear whether or not Jackson may have a chance to have surgery to stop the seizures and give him a better quality of life weighed heavily on me.  More than I realized.  Monday I woke up and the first thing I thought of was “They are meeting today.”  I thought about it all day long.  Tuesday I woke up a nervous wreck.  I couldn’t eat, I carried my phone with me everywhere and turned the volume up so high so I could hear it all over the house.  By 10 a.m. I was so edgy I called the nurse coordinator, who didn’t answer, so I left her a message to call me.  Between 10 a.m. and 2 p.m. I probably called her about 15 times without leaving messages.  Around 2 p.m. I left her another message.  By 4 p.m. I was frantic.  Why wasn’t she calling me?  I called her again and left her a not very nice message.  I won’t go into details but I will say that I cried off and on and let her know that it was unprofessional, disrespectful and cruel to leave parents waiting and not call them when she had told them she would.  Then I began calling every number at the hospital I had.  Voice mails and automated systems was all I could get.  I finally got a hold of the neuropsychologist we met with who told me the meeting on Monday had been canceled.  I again started crying on the phone.  She was very understanding and got me calmed down.  She told me they were meeting on Friday the 15^th and would make sure I was called after the meeting.  I hung up the phone, sank to the floor and cried for a long time.  The stress of waiting had apparently taken a toll on me that I didn’t realize.  After crying my eyes out I called the nurse coordinator back and told her I was sorry for leaving a mean message but that I was also not sorry.  I explained that they need to know how important this is to parents and that there should be better communication, among other things.  Since then I have gotten about 3 calls from different people at Seattle Children’s wanting to talk to me about the lack of communication and what they could do to better serve parents.  They are supposedly going to have a meeting about it and come up with some solutions.  If something good comes out of my “breakdown” it will be worth it. 

Dealing with greedy insurance companies and oblivious doctors and hospitals is not the life I thought I was going to have.  There are definitely days where it is not the life I want.  But here I am, and if my fate is to spend my life fighting for my son then I will do it.  With tears in my eyes, a knot in my stomach, and my heart overflowing with love for my son, I will do it. 

Different, not less.

Last night Kevin and I watched the movie Temple Grandin.  If you haven’t seen this movie then stop reading my blog, go to the video store, rent it, and watch it immediately.  I had heard of this movie many times but finally got it at the library last week.  I can’t say enough about how great it was.  For those of you who don’t know who Temple Grandin is, here is a little bit of info on her.  She is autistic, brilliant, a professor at CSU (Colorado State University), revolutionized the cattle industry and in effect became an animal activist/humanitarian.  Her life story is an inspiration, not only for autistic children and their families, but for everyone.  While Dr. Grandin (yes she is a Dr., having gotten her Ph.D., remember she is autistic) is an amazing woman, I think her mother is just as amazing.  Eustacia Cutler is a Harvard graduate herself, mother of 4, and a woman who never, ever gave up on her daughter despite numerous advice to institutionalize her.  I was truly inspired by how hard she fought for her daughter and followed her mother’s heart.  I wish I had an ounce of her strength, determination and devotion. 

In the movie, Temple’s mother constantly reminds her that she is “Different, not less.”  Three words, a mountain of meaning.  As soon as I heard it I got teary eyed.  That is exactly how I feel about my child.  He is different, but he is not less than any other child out there.  The truth is that every child is different.  There are no two children alike.  Not even twins.  Each child has their own personality, their own strengths, their own weaknesses.  But it is special needs children who are constantly labeled as different.  Why is that?  I see a lot of neurotypical children doing weird and strange things but they are never said to be “different”.  They are just children, perhaps “going through a stage”.  Yet you see a child walking with a limp, or a child rocking back and forth, or a child who doesn’t answer you when you ask a question and all of the sudden they are “different” and people stare at them or run away.  Maybe if we embraced each other for our differences instead of associating negative thoughts with the word different, people would just accept others for who they were. 

For example, I have two best girl friends.  One who I grew up with and share many qualities with, we aren’t too different.  The other, a complete opposite of me in many ways.  For one she has a whole different skin color (she’s my black sista).  For another she is a girly girl.  She dresses very nice, has matching jewelry and purses for each outfit, does the whole makeup and perfume thing.  Seriously has anyone ever seen me in matching jewelry and purses, let alone a matching outfit?  No.  For another she has a beautiful show home, I call it Hotel LaPrell (that is her name).  Each room has a different theme.  I have a standing reservation for the Egyptian room while Jackson has a standing reservation for the African room.  It’s a beautiful home but nothing like my average casa.  On the outset the two of us are one odd couple.  We couldn’t be more “different”.  Yet for some reason we are like sisters from another mother.  I accept LaPrell for who she is and she accepts me for who I am (even if she does object to my constant wearing of Chacos).  If I had been someone who rejected or dismissed others who were different from me, I wouldn’t have had one of the best friendships I’ve ever had and my life no doubt would have been a little emptier.

So maybe instead of saying to ourselves in a negative tone “That person is different” we should say in an uplifting tone “Hey that person is different!” and accept them for the truly unique person they are.  I wonder what would happen to our world if everyone did that.  It’s a really nice thought to consider.  So next time you are out and about and see someone who is different than you, remember - “Different, not less.” 

Still Waiting

I’ve been waiting to post on my blog until I hear from the doctors in Seattle.  Well I am still sitting here waiting!  The surgery team on Jackson’s case should have met yesterday and we should be hearing from someone soon.  The wait is killing me, I am not a patient person.  To top it off, Jackson has just been so grouchy and obstinate lately.  One day he is beautiful – happy, laughing, content.  The next day he is screaming and yelling, pushing me away every chance he gets, unhappy about everything.  If he doesn’t get what he wants he throws a tantrum.  I believe we are in the terrible two’s.  Leave it to Jackson to at least accomplish that milestone on time!  I think it is highly unfair to have a child with disabilities that seems to make all the crappy milestones (teething, tantrums) right on time.  A bit of ironic humor seems to guide my life these days!

I recently read a book called The Child Who Never Grew by Pearl S. Buck.  Buck was a very popular writer in the 1930’s who won the Pulitzer Prize and the Nobel Prize for Literature.  She had a daughter who was mentally disabled.  Buck tried for a few years to raise her daughter on her own but eventually placed her daughter in an institution.  She was very conflicted about this.  She desperately wanted to raise her daughter and care for her, but societal views and pressure were different in her day.  For many years, I would say until the 1980’s or so, if you had a child who had some kind of physical or mental disability the thing to do was to put them in some kind of institution where they could receive the kind of care they needed.  That was the idea anyway.  What Buck discovered was that some of those institutions were nothing more than a shelter.  While there was a degree of embarrassment and shame to having a child who was institutionalized, Buck refused to feel this.  She found a wonderful home for her daughter, visited her regularly, and then dedicated her life to getting special needs children adopted.  Then in 1950 she wrote The Child Who Never Grew.  Buck felt her and her daughter’s story needed to be heard, no matter how difficult it was to come forward with it.  60 years later I read their story and found myself understanding a fellow mother’s love and decisions.  While I can’t fathom having to put Jackson in some kind of institutional home, I don’t know what life has in store for me.  Maybe someday I will no longer be able to care for him and that may be my only choice.  Perhaps it might even be a better one for Jackson.  But for now I am thankful that there is a better understanding from society and doctors about the ability to raise special children in their homes.  Whether we parents of special needs children chose to keep our children in our homes or put them in the care of others, it is our personal decision.  It should be respected by others.  Here is a little part of the book that touched me.  I hope it touches you.

From The Child Who Never Grew by Pearl S. Buck:

Parents may find comfort, I say, in knowing that their children are not useless, but that their lives, limited as they are, are of great potential value to the human race.  We learn as much from sorrow as from joy, as much from illness as from health, from handicap as from advantage – and indeed perhaps more.  Not out of fullness has the human soul always reached its highest, but often out of deprivation.  This not to say that sorrow is better than happiness, illness than health, poverty than richness.  Had I been given the choice, I would a thousand times over have chosen to have my child sound and whole, a normal woman today, living a woman’s life.  I miss eternally the person she cannot be.  I am not resigned and never will be.  Resignation is something still and dead, an inactive acceptance that bears no fruit.  On the contrary, I rebel against the unknown fate that fell upon her somewhere and stopped her growth.  Such things ought not to be, and because it happened to me and because I know what this sorrow is I devote myself and my child to the work of doing all we can to prevent such suffering for others.