The Teacher

The other day I was driving around town running errands when an old familiar song came on my iPod.  A song that once brought me back to life.  The song is “Hello World” by Lady Antebellum.  I think I wrote about it before on this blog.  The first time I heard this song was a few years after getting Jackson’s diagnosis.  It was at a time in my life when I had just started seeing the light at the end of the tunnel.  A turning point when I started to notice that there was “a light, a little grace, a little faith unfurl” (to quote the song).  

I think for a long time I hid from others the true devastation that was going on inside of me.  I grieved for so long over the lost little boy I thought I was going to have.  I put on a brave face while inside I was secretly thinking things would be better off for me if I died.  A couple of years ago I testified at a senate hearing in our state legislature about that despair.  I would be driving on the freeway and would think to myself “What if I just swerved into that semi?  Would I go quickly or live to suffer more?”  It was a dark time for me.  There was a lot to accept.  The things Jackson may or may not do, how different my life would be, how hard it would be at times, the fear I would live with surrounding having a special needs child.  All I wanted was for my little boy to be “normal”.  Why couldn’t he?!   I felt I was being punished for something I did in my life and that I had done something wrong to deserve this.  Now, even as I write this, remembering those feelings is hard and painful.  I wish I could go back in time and tell myself to stop.  Just stop Stacey!  I had no idea that it would get better, so much better.  That there would be a day when I was thankful that Jackson was born with disabilities.  That the day would come eventually when I not only said “HELLO WORLD!!!” but embraced it with a new found passion I never even knew existed inside of me.  

Jackson have given me so much.  He has taught me more in his 7 years than I learned in the 36 before he was born.  He has made me a better person, a stronger person.  He has opened my heart and my mind.  He has made me smarter, more understanding, grateful, and patient.  Well, I still have some work to do on that patient part but I am better.  He has turned me into an advocate for people with disabilities.  Something I would have NEVER envisioned for myself.  But something that I truly, truly love.  I have met the most extraordinary people because of Jackson.  I have so many friends in my life that I draw strength from, admire and love just because my son was born with disabilities.  My life is so full because of my son.  I’m not sure how I will ever repay Jackson for the life he inadvertently has given me.  

During that dark period I feared I would never experience the joy parents get from their children.  Or pride.  Boy was I wrong.  I am so proud of Jackson and how far he has come and continues to progress.  I get joy every day when I look at his cute little face and hear his intoxicating laugh.  I may not be the parent I thought I would be standing on the sidelines cheering my son on as he scored a goal or basket, but I know now that I will still be on the sidelines cheering him on (for totally different reasons).  And I will be louder, prouder and by golly the most grateful!      

Today I give thanks to my teacher Jackson for encouraging me to dig deep and try to find my best self.  I’m still digging, and probably always will, but I’ve discovered a part of me that never existed and parts that laid dormant for years until Jackson showed up.  I had no idea the changes in store for me on the day he was born.  I knew I was getting a new name (Mom) but not a whole new life and purpose.  And a big shout out to Lady Antebellum for giving me the song that would give me the courage to say “Hello World”, something I couldn’t do for a very long time. 

"Motherhood is about raising and celebrating the child you have, not the child you thought you’d have.  It’s about understanding he is exactly the person he’s supposed to be.  And, if you’re lucky, he might be the teacher who turns you into the person you’re supposed to be.”  -  The Water Giver

Routine (or lack of it)

The kids are back in school which means germs are back infesting the children.  Oh joy!  At the end of the second week of school Jackson started getting a runny nose followed by congestion.  Which he quickly shared with me.  (Someone remind me why I had children).  For some reason, it hit me like a ton of bricks while Jackson was mildly affected by it.  Thankfully I have recovered, however here we are about 3 weeks later and Jackson still has the runny nose and congestion.  Apparently that wasn’t enough, diarrhea then took over his body.  For the last couple of weeks he has had it off and on.  We’ve gone through more bananas, rice, white bread and applesauce than we normally do in a year.  He’s probably missed about a week of school due to the unwanted bowel issues.  There isn’t anything like driving in the car with a kid with explosive diarrhea.  Whatever you are envisioning with that scene is nothing compared to the reality.  Let’s just say days later, lots of Lysol, and car seat washings have not fully eliminated the smell from the car.   Not to mention how many baths I have given the kid on an emergency basis.  He has returned to school today and I am crossing my fingers and toes he is able to get through the day without an explosion.  This Mama needs a break from poop and a grouchy child.  Mostly I long to get back into our school routine.  I want Jackson at school learning and I want to get to my pile of reading and emails. 

The highlight of the last couple of weeks is that [drumroll…….] Kevin and I got to go on a date!  We haven’t had a date night since March when we went away for the weekend.  Two angels stepped forward and offered to babysit.  A big, giant, huge shout out to Summer and Matt.  They have no idea how amazing it was for us to go on a date.  Statistics have shown that the divorce rate of couples who have a child with special needs is extraordinarily high.  Lucky for me I took my time finding a great man to marry so that we would be solid and divorce would never be in our vocabulary.  But, it can be difficult and stressful at times.  We are lucky that Jackson is ridiculously healthy despite his diagnosis.  Nevertheless, we still need couple time.  It is hard for us to find people who are willing to watch Jackson.  I think it scares them that something might happen that they don’t understand and also the fact that he is a big kid and hard to move.  I totally get that.  So when we get an offer to go out we jump on it!  Summer had been around Jackson a couple of times but never to babysit him.  Matt had never met him.  For them to just offer was incredible.  We are very grateful to have people like that in our life.  Thanks Summer and Matt!  You two rock!

The last couple of weeks have been anything but routine but as Randy Lewis said “When the map and terrain differ, go with the terrain.”

I'm Back!

Whew!  It seems like a lifetime since I last wrote for the blog.  Summer was crazy busy and just flew by.  The kids are back in school and I feel like I have a life again.  I think the summer of 2015 is going into my record book as a pretty great one, albeit it did have its moments.  Where to begin…..

Let’s start with Sylvia’s adoption.  That’s right, we adopted Sylvia for real!  We spent 2 ½ years of being stuck in limbo while the state Court of Appeals and Supreme Court determined whether her birth mother’s parental rights termination was indeed legal.  When our attorney called to say that it was officially over I truly can’t put into words how I felt.  I started jumping up and down while attempting to dance around the house all the while crying and laughing.  Then I held my breath for the next month and a half until we sat in court and made it official.  

Sylvia always seemed like a member of our family, I really don’t remember much of our life without her around.  But as any foster parent knows, there is always a sense of disconnect.  I think it is a defense mechanism in case the child is removed for some reason.  I always felt that she was our foster daughter, not our daughter (yet).  I maintained a bit of distance in my heart, and I knew I was doing it.  While I knew the law was on her side, not her birth mom’s, there was always that sense that a judge could make a decision that would take her away from us.  As we sat in court on July 24^th to adopt her, our attorney said something that was like a light switch in my heart.  She said that adopting our daughter was the same as if we had her biologically.  That we were responsible for caring and loving her, just like Jackson.  While that sounds like a no brainer, it really put it in perspective for me and for the first time I knew I had a daughter.  I know no one is going to show up on our door and take her.  They can’t.  She’s all ours!  I feel myself opening up more and more to her and creating new traditions with my daughter.  For example, we have started coloring together at night.  Sylvia is really artistic (and I am not!) and loves to do art projects.  Coloring is something I can pull off so we have bought a couple of fun coloring books and sit down at the table at night to color before bed.  It’s pretty cool. 

As for Sylvia, well she has seamlessly adjusted.  Honestly, I think she felt like she was a Klim this whole time so the adoption was just about changing her name.  No big deal.  She’s pretty resilient that kid.  She did however opt to add another name.  Her birth name was Sylvia Storm.  So she added another middle name to it and her name is now Sylvia Storm Kira Klim.  Kira was the girl name we had picked out when I was pregnant with Jackson.  Now we have our Kira.  As Sylvia says “Double S, Double K”. 

A couple of weeks after we adopted Sylvia we headed to Montana to watch my baby nephew Joey marry his longtime love Megan.  I was 13 when Joey was born.  I changed his diapers, fed him his bottle, watched him learn how to ride a bike, helped him with his homework, witnessed his teenage years (when he would only talk in one word sentences), saw him graduate from high school and college and turn into the pretty cool man he is.  It was an amazing weekend.  Joey and his wife love the outdoors probably more than anyone I know.  They got married in a place called Paradise Island, an island surrounded by the waters of the Clark Fork.  Megan arrived to her wedding in a raft.  Dinner for the weekend was cooked in dutch ovens, the music was Patsy Cline, Johnny Cash and Willie Nelson, the boys in the wedding party wore Levi’s, and there was real moonshine on the dinner tables (I got a buzz just smelling the stuff).  It was a weekend celebrating not only Joey and Megan’s love for each other, but celebrating who they are.  It couldn’t have been more perfect and I am ecstatic to have another niece!

 The beginning of the summer started with a couple of fun weeks in Florida visiting my beautiful in-laws and family.  We spent an extraordinary amount of time in the pool this time.  Now that Jackson is walking on his knees he is better able to communicate his wants and needs.  So after breakfast Jackson would head over to the door out to the pool and start banging on it.  His way of saying “Let’s get in the pool!”  Same thing after lunch, back in the pool we went.  No complaints, there’s nothing better than spending the hot summer days in a pool!  On our way home we stopped in Denver for a couple of days to visit my family and friends.  We always have so much fun with them!

Sylvia went to a couple of camps this summer – water camp (kayaking, canoeing, stand up paddle boarding) and rock climbing (she chose it, we didn’t force her, but we were super happy about it).   and Jackson went to Funshine Day Camp for a week which is for children with special needs.  By the time summer came to end I hadn’t done half of the things I wanted to with the kids.  It seemed like we were always on the go.  I planned a “summer’s going out with a bang” last week of activities with the kids but sadly we weren’t able to do those things.  The smoke from the heartbreaking fires from all over our beautiful state brought in dangerous air quality so we were forced to stay in our home for a week or so.  I realized how much we take our fresh air for granted.  Waking up every morning and checking the air quality to see if you can leave your house was a new reality I never envisioned.  The fires are still burning but thankfully our air quality has gotten back to normal, good levels.  The smoke was nothing compared to the loss of life and homes in our state that continues to this day.

Sylvia is in 6^th grade this year and I am trying to wrap my head around the fact that she is off to middle school next year.  Yikes!  Jackson started 2^nd grade this year in a new school.  As you know last year was a tough one for him and us.  I am happy to report it is like night and day this year.  His teacher loves him, thinks he is amazing and is not letting him get away with anything.  The first week of school he was able to identify the words (not pictures) cat, bus and can.  He said the word “cat” and “un” (for sun).  He picked his written name out of a group of other names.  At this point I am questioning who my kid is!  I had no idea he knew words or his name.  I always knew he was smart on many levels but had no idea he was this smart.  Last year his teacher had him picking up a block and putting it in a box.  In one week of school this year and he is nearly reading!  What a difference a teacher makes.  I can’t wait to see what else that kid has been hiding from us. 

As for me, I am happy to have the days to myself again.  Having the kids all summer took a toll on my body.  Jackson is now 80 pounds and the lifting, moving him around the house, and the in and out of the car wrecked by back.  Living with constant pain all summer made me grouchy and irritable.  I wasn’t a very pleasant person to live with (shout out to Kevin for putting up with me!).  Having time to get back to my advocacy work, catching up on errands and doctor appointments I neglected, and being able to come to the bakery and write my blog has made me feel like me again.  Thankfully my doctor approved some massage therapy along with my chiropractic visits so I can get some pain relief.  Not having Jackson at home all day gives me a much needed back break.  Not having to entertain Sylvia all day gives my brain a break! 

I’m not sure who said it, but this pretty much sums up my summer:  “My kids are the reason I wake up each morning, the reason I breathe….and why my hair is falling out, my house is a mess and I’m crazy.”

Adoption and Placement

Last week was an eventful week for the Klim family!  So let’s get to it.

As many of you know Sylvia is our foster daughter that came to live with us on March 31, 2013.  What some of you may not know is that about a month after she moved in, her birth mother filed an appeal with the Washington State Court of Appeals to fight her parental rights termination.  After a ridiculous amount of delays and continuances by the attorneys on both sides, the Court of Appeals finally filed their decision at the end of October 2014.  They ruled that her legal rights weren’t violated and that the termination stood.  We were elated, but not for long.  Her attorneys quickly turned around and filed an appeal with the Washington State Supreme Court.  We began to feel that this legal battle was never going to be resolved and that Sylvia would be an adult before we could adopt her.  The Supreme Court doesn’t hear every case filed before them, unlike the Court of Appeals.  On June 2^nd they met to discuss whether or not they would hear the case.  We weren’t sure how long it would take for us to hear their decision but assumed it would be a couple of months.  Instead it only took two days.  Last Thursday I got the call from our attorney that the Supreme Court refused to hear birth mom’s case.  Which means [drumroll please]….we can proceed with adoption!  [Cheers, clapping, jumping for joy, tears, laughter, happy faces] For the last two years this legal mumbo jumbo has hung over our family and prevented a little girl from having her forever family.  When I got the call I literally jumped in the air, danced around the living room and cried.  I didn’t realize what a tremendous weight I had been carrying over this.  I felt so free and light when I got the news.  I instantly called the social worker to tell her the good news and to tell her to get going on the adoption paperwork.  Our attorney also kicked it into high gear to get the paperwork going.  They are working hard to finalize the adoption before we got to Florida on June 29^th.  I don’t know if they will make it but honestly I don’t care.  All that matters is that it is going to happen and that there aren’t any more legal roadblocks. 

Kevin and I were so emotional and excited that day and couldn’t wait to sit Sylvia down and tell her.  I wanted to race to her school and tell her that morning when I found out, but couldn’t do it without Kevin so we had to wait for him to get home.  When we sat Sylvia down that night and told her we had something to tell her she said she knew what is probably was.  I asked her what she thought it was.  She said it was probably about the adoption.  We told her she was right and that the Supreme Court finally made their decision and that we were now able to go through with the adoption.  Her response?  She shrugged her shoulders and said “ok”.  Kevin and I looked at each other and laughed.  She told us that she knew it would happen so it wasn’t a big deal to her.  Aaaahhh to be an innocent child again!  We never really told Sylvia the whole story about what was happening.  We didn’t want to put blame on her birth mother and stir up more issues for her.  So about a year ago when she was asking a lot of questions about when we were going to adopt her, we had her counselor and social worker sit down with us to explain to Sylvia what was happening.  We told her that the judge in Spokane said we could adopt her but that there were other judges who were the bosses of the Spokane judge and they had to look at the case to make sure the Spokane judge followed the law.  Being shielded from all the details and not knowing the risk prevented her from the worry we were going through.  Which is how it should be for a child.  She of course was more excited to hear we were going out to dinner at one of her favorite restaurants to celebrate than she was about being adopted. 

Over the weekend we discussed her name change.  She wants to keep her first and middle name and of course she wants her last name to be Klim.  But we also decided to add another name.  If Jackson had been a girl his name would have been Kira.  That was the name we wanted for our little girl.  So her new name will be Sylvia Storm Kira Klim.  She is pretty excited about that.  Last night Kevin and I signed the court documents for adoption.  We are almost there!

Now on to the Jackson update.  We had our meeting last week regarding Jackson’s placement.  It went well.  There were about 13 people at the meeting.  It was pretty unanimous that where Jackson is at now is not the best place for him.  One of the district reps even made the comment that it seemed Jackson was pretty excluded in his classroom.  He has been.  A couple of things happened in the days leading up to the meeting that reaffirmed this.  I spoke with Jackson’s out of school speech therapist who made the comment that when he visited Jackson in his classroom it was evident that his teacher was a good teacher to “her kids”.  He then said it was very apparent to him that she didn’t consider Jackson to be one of her kids.  That broke my heart.  The day before our meeting I picked Jackson up from school to take him to horse riding therapy.  When I asked his paraeducator how his day was her reply was “He was too happy, to the point that it just didn’t work for us.”  SERIOUSLY!!!  She was complaining that Jackson was “too happy”.  I get complaints when he is unhappy, now I get a complaint that he is too happy.  I wanted to slap her.  When I told these two stories in the meeting I started to cry.  I promised myself I wasn’t going to cry!  But the reality of these comments really hurt.  It hurt because Jackson is such a sweet, loving little boy.  For them to not see that and appreciate who he is tore at my heart.  And for them not to teach him and ensure he is learning angers me.

The decision we made was to move Jackson to a different school.  While I hate moving him around, I definitely don’t want him at that school anymore.  Kevin and I will go to his new school this week to visit and observe.  At this point we are thinking Jackson will be moving between two classrooms.  One where he will work more academically and one where there will be some inclusion, field trips, and more one on one for him.  I think it is a good solution and one I hope will give Jackson what he needs to succeed.  I was happy that the district listened to the concerns, recognized them and was willing to think out of the box and not place Jackson somewhere he didn’t belong. 

All in all it has been an emotionally exhausting week at the Klim’s.   But progress has been made all around!  As Christopher Nuttall said “Concentrate on the here and now.  The future can take care of itself.”

A Well Kept Secret

My Dad had a lot of sayings.  Many of them politically incorrect.  But they were his sayings and I grew up hearing them, and now that he is gone, laughing at them.  If my Dad was still here I think he would describe the last month of my life as “One hell of a shit storm.”  He would be right.

 

Kevin and I own a piece of property on the South Hill in Spokane, right in the middle of the city.  It’s an amazing piece of land.  A little over an acre with a nearly 115 year old carriage house to an old mansion (that is long gone), another building that has a mother-in-law type quarters, a two car garage with attached shop/laundry room, and more trees and foliage that you can envision.  Our realtor who has been in the business nearly 20 years said she has never seen anything like it in Spokane.   Our dream was to someday build a house on the back of the property that would accommodate Jackson and his wheelchair.  However, the city recently let us know that they won’t allow us to do that.  So we decided to sell our beloved property.  We’ve rented both houses out for the last 5 or so years.  Now our renters are all moved out and we have it on the market.  But after 5 years of neglecting the land and renters living in the houses there are more projects to do than I can count.  For the last month I have spent nearly every free second over there washing windows, cleaning bathrooms and kitchens, painting the houses and garage, weeding, raking, restoring gardens, mowing, trimming, and any other yard and house work you can imagine.  Kevin’s been equally busy working the land and making numerous trips to the dump with all the yard waste I produce.  Needless to say I am sick of it and I still have at least a month of work to do over there.  It’s been a big stressor.  That along with the end of the school year (why do schools wait until the end of the year to have all of their activities?!), Jackson’s therapy and doctor appointments, Sylvia’s band concerts and field trips, and the day to day stuff to maintain our house that we live in, it’s been a bit much.  Then one day last week a phone call just added to the incredible stress I have been feeling and my Dad’s saying rang true.

Unless you have a child in special education you can’t imagine the struggle we go through to get our children the education they are legally obligated too.  It’s a well-kept secret among us special needs parents.  I just send Sylvia off to school every day and she is safe, educated, and there are no hassles.  Sending Jackson off to school is a whole different story.  Is he safe?  I hope so.  But I don’t really know because he is non-verbal and can’t tell me.  I will tell you he comes home sometimes with bruises that I don’t know how he got.  There was a trip to the ER last month when he fell off the changing table in the bathroom and cut his eyelid open.  But what did he hit his eye on?  Who knows?  No one could tell me.  Not only that, but I had to ask for an incident report, one wasn’t written automatically after the accident.  Once, Daniel got hit with a ball on the back of his head so they wrote one up for him and called me right away.  He was completely fine.  But a trip to the ER and possible stitches?  No report.  As far as him learning, well that is a whole new topic.  A sad one.  That one entails an amount of energy I liken to preparing for war.  And really, it is a war.  A war where I have to fight for Jackson to get an education that he is legally entitled to.  I keep saying “legally entitled” and I say that because there are laws specific to kids like Jackson.  There are state laws that are generally based on the federal law which is called IDEA (Individuals with Disabilities Education Act).  These laws dictate what, where and how kids like Jackson should be educated.  It has protections to ensure that they aren’t just thrown into a room and babysat all day.  For example, one that we are fighting is Jackson’s entitlement to be taught in the “least restrictive environment”.  This means that he has a right to be taught in the general education classroom with normally developing peers and he can have accommodations and modifications (i.e. an aide, learning different material than the rest of the class).  If he isn’t able to be successful in that classroom then he can be removed periodically or completely into some sort of special education classroom setting.  But in Jackson’s case, the school district didn’t do that.  Instead they told me that he didn’t qualify for general education, which is illegal.  They then farmed him out to a segregated special education classroom where he spends 99% of his day.  He eats lunch, has music class and library in that classroom.  He was never given the opportunity in the general education classroom.  So back in February I asked the teacher and principal for inclusion in the general education classroom.  I wanted Jackson to spend at least a little time every day with his normally developing peers.  They both agreed that it was something we could pursue.  I was so excited!  Finally, I thought Jackson was going to get out of that classroom and have more opportunities to learn.  I heard nothing for the next couple of months so in April I sent them an email asking to meet again to discuss inclusion.  We set up a meeting for mid-May.  Then I got a call a few days before the meeting from his teacher asking to move the meeting to June.  I reluctantly agreed, it was a little late in the school year to meet but I was really trying to be cooperative (kill them with kindness!).  Then she mentioned that a school district special education representative would be at the meeting.  At first I was happy to hear that because I thought we were really going to make a plan for inclusion.  The next day I flew to Seattle for a meeting and as I flew over the beautiful Cascade mountain range and Mt. Rainier I started to question what this meeting was really about.  For some reason, I just had a bad feeling.  Later that day I called the special education director at the school district who has been a driving force for me this past year to fight for inclusion.  She has been amazing and supportive.  I told her what was happening and that I had a bad feeling.  So she hung up and went to find out what was going on for me.  It turned out that our meeting wasn’t about inclusion, instead the district has plans to move Jackson to a more restrictive and less educational environment. 

We have struggled all year with is teacher not being able to teach him.  I have allowed his educational goals to really be dumbed down in an effort for her to figure out how to be successful in teaching him.  It’s been frustrating to watch Jackson not learn like he should have this year.  I have done everything I can to motivate and implore her to explore various learning options.  I even worked with another teacher in a different school who knows how to teach kids like Jackson.  I got district permission for this teacher to take a half day out of his classroom to come to Jackson’s and work with him and his teacher to come up with some learning goals.  His teacher was receptive to this and has even implemented some of the goals.  I can tell they have been beneficial for Jackson.  About a month ago we met for our parent/teacher conference and Jackson’s teacher said she didn’t think her classroom was the right place for Jackson.  She then said to me “You don’t really think Jackson will ever write his name or anything do you?”  I couldn’t believe it.  I told her that nine months ago I would have never imagined Jackson walking on his knees and me having to buy baby gates for my house.  But yet, he is and I did.  I have no idea what that little monkey is going to do in a week let alone a year.  So I told her “I’m not going to write my kid off in Kindergarten.”  Which was apparent to me she was doing.  While I don’t think her classroom is the best one for Jackson, I know for sure that this placement the district is suggesting is absolutely NOT where Jackson should be.  The question is whether or not we can find a solution.

As if having a child with disabilities isn’t hard enough, the school districts want to fight parents on every little thing.  Why?  Because it costs them money.  Inclusion costs money.  Having an aide costs money.  Accommodations cost money.  So they break the laws and deny our children services simply because that is what they have done for years and have gotten away with it.  Fighting a school district or reporting them for violations is expensive, exhausting and can be detrimental to the child.  More often than not parents just give in to the district to avoid the expense.  Sadly, some parents don’t know enough about the laws and rights of their students to object.  Even more upsetting is that the school districts often count on that being the case.  It’s troubling, and it’s happening all over our country to thousands of children and their parents.  But unless you’re in the war zone, you don’t hear about it. 

When I got the call they were moving Jackson I was in the Seattle airport waiting for my flight home after spending the day in a meeting where we were ironically discussing new professional standards for paraeducators in special education classrooms.  I used every ounce of energy I had left that day to not cry in the airport.  I made it to Spokane and was able to walk to my car before the tears hit and stayed pretty much until I went to bed that night.  How dare they treat my son like this?  How dare they imply that my son isn’t worthy enough to be in a learning environment?  How dare they place my son in a “classroom” (I use that term lightly) where every Friday is movie day?  Jackson doesn’t even watch movies at home.  The only thing he likes to watch is Seattle Seahawks football (yup, my kid is awesome!).  It took a couple of days of tears and sadness on my part to rally.  Rallying I am.  I have probably spent 6 hours in the last week reading the law (both federal and state), preparing our argument with documentation to back it up, creating and writing an education vision for Jackson with Kevin, and calling, meeting and emailing with district representatives to discuss district procedures and operations.  I met with one of the district reps this week to discuss Jackson and implored her to begin thinking out of the box.  After all, Jackson has always been an out of the box kind of kid.  I’m not done yet.  There are still more hours of work ahead for me before we meet. 

I’m exhausted but ready to fight for Jackson.  If they want to mess with my kid, they are going to have to go through me first.  As Kevin said, we will do whatever we have to to fight for our son.  If we have to break the bank and hire an attorney we will.  I will not allow my son to be treated as less of a person because he has disabilities.  Jackson CAN and WILL learn.  Next Thursday we will meet.  Send us your positive thoughts and even though I am not a praying kind of person, say a few prayers for Jackson.  In the meantime I am hanging on to the words of Harriet Beecher Stowe, “When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give up then, for that is just the place and time that the tide will turn.”

Annoyed and Proud

I will obviously never forget the day we sat in the doctor’s office and got Jackson’s diagnosis.  In many ways it was all a blur, in others there was so much clarity.  One thing that always stuck out in my mind was when the doctor said Jackson may never walk.  He followed that with pointing out that fact that the balance part of Jackson’s brain looked really good so there may be a chance he would walk.  That little comment was one thing I held onto that day.  As time went on and Jackson showed no signs of wanting or trying to walk, I would always think in the back of my mind “well, maybe, someday, he might.”  There’s that expression “Be careful what you wish for.”  Yup, be careful.

Many months ago Jackson was sitting on the floor and all of the sudden stood up on his knees.  It was awesome!  But typical Jackson form, he didn’t do again for quite a while.  Then he did.  Before we knew it he was on his knees a lot.  Then came the day he took a couple of steps with his knees and promptly fell down.  Again, time passed.  A new day came and Jackson again started trying to walk on his knees.  We would try anything to get him to take a few steps.  Before we knew it the two steps had turned into 5, which turned into 10.  We would bribe him with food to make him walk to get it.  He would always want that food and would walk however many steps he needed to get to it.  Now our once stationary kid whose immediate world was just an arms length away, is now all over the house.  I couldn’t be prouder!  Nor more annoyed.

Now that he is mobile his favorite place is the kitchen.  He likes to swipe all the pictures off the fridge, pound on the pantry door, and glue himself to my leg when I cook.  Lately he tries to reach things and pull them off the counter top.  I can’t take my eyes off of him!  I finally went and bought a baby gate to keep him out of the kitchen while I cook.  Pots of boiling water, knives on the counter and opening the oven are not conducive to Jackson‘s safety.   He doesn’t like that baby gate and he makes sure we know about it!  Was I happy to spend the $30 for that baby gate?  You know it!  I never envisioned needing a baby gate to keep Jackson out of the kitchen.  Now we are discussing getting another one for the stairs.  He has been making his way over to the stairs more and more lately.  Luckily we have caught him in time before he plunges down them, but we need to do something and fast. 

For spring break this year I took Sylvia and Jackson to Seattle and Olympia for the week.  We stayed in a couple of different hotels where space was limited for Jackson to move.  But move he did.  Every morning after I got out of the shower, Jackson would walk from the bedroom area to the bathroom to hang out with me while I got ready.  It was adorable.  Sometimes he had to maneuver around suitcases and his wheelchair, but he got to me every time.  After a while he would get bored and move back to the bedroom area where his sister was.  To see him walking around the hotel room was quite the sight.

This weekend I was working around the house and suddenly realized Jackson was no longer in the living room.  I could hear him but wasn’t sure where he was.  I found him in my closet, just sitting in the middle of the floor of our walk-in closet.  Eventually he decided to lay down under Kevin’s clothes and disappeared into the fabric abyss.  All you could see were his feet sticking out from the clothes.  I wanted to cry.  He had left the living room on his own, found a new part of the house he never really saw, and was entertaining himself.  He is exploring and with exploring comes learning.  It was awesome! 

Sometimes I look at my little boy and I wonder what he is thinking.  What does he think of his life?  Is he happy?  Does he want something I don’t know about?  What does he want for dinner?  How was his day at school?  Because he is non-verbal there is so much I don’t understand about Jackson.  Unfortunately, I think this makes me underestimate him at times.  But watching him learn how to walk on his knees all by himself has shown me how much courage that kid has.  Courage to trust his body, a body that notoriously works against him.  Courage to go to new places that might seem kind of scary at first.  Courage to keep trying no matter how many times he loses his balance and falls.  While his newfound mobility has led to me being repeatedly annoyed, I also don’t think I have even been prouder of him.  Anais Nin said “Life shrinks or expands in proportion to one’s courage.”  Jackson’s life has surely expanded because of his courage.  The world is a bigger place to him.  Now that he is realizing that, maybe in a few years I will be writing a post about Jackson walking on his feet for the first time.  For Jackson, my mystery child, there are many unwritten chapters to come. 

Wide Open Spaces

When I was in 3^rd grade I came home from school one day and my Mom patted me on the head and said “Tell your Dad I left him.”  And off she went.  My parents were both alcoholics and our home life was, well, grim.  I remember thinking I didn’t want my Mom to leave.  I also remember thinking that maybe there would finally be some peace in our house.  At the time we lived in Emmett, Idaho.  It was the 70’s and a single man raising his young daughter was pretty unheard of back then.  Dad and I had to learn how to do laundry, clean the house, and cook (which neither of us could figure out).  It was a tough few months but we got through it, together.  That’s why my Dad was always my best friend, my biggest supporter and even after Kevin and Jackson arrived in my life, my main man. 

A few months after Mom left, my Dad told me we were moving to Colorado.  He worked for the Bureau of Reclamation and had gotten a transfer and a promotion.  I wasn’t happy to leave, not at all.  I made sure Dad knew that.  But he argued we needed a new start and whether I wanted to admit it or not, we did.  I remember the day we arrived in Grand Lake, Colorado.  Grand Lake is a very small town in the midst of the beautiful Rocky Mountains.  The car we were driving was some fancy Chevy that was a convertible (looking back it was probably my Dad’s mid-life crisis car).  The first thing we did was sell that car and buy a truck.  We really had no clue what living in the mountains of Colorado meant.  The only stores open in town were the school, post office, grocery store, liquor store/hardware store and the bar/restaurant.  The next town over was 20 miles away and if you really needed anything you drove two hours to Denver to do your shopping.  It was a shock.  Not that Emmett was that big but it was like New York City compared to Grand Lake.  So began our life in the mountains and the wide open spaces. 

As a little kid I didn’t really think too much about being so isolated.  As a teenager I appreciated the beauty of the mountains, but began to hate the “boring” old town, with nothing to do, that we lived in.  We had to drive an hour to Winter Park to go to a movie.  An hour!  I couldn’t wait to graduate and move somewhere bigger.  And eventually I did.  I ended up going to college in Denver.  I finally lived in the city!  I hated it.  The traffic, the noise, the abundance of people.  It was just too much for me.  As soon as I graduated I headed west and through many turn of events found my home in Spokane, Washington.  I was actually born here in Spokane but I was adopted at birth and my parents didn’t live here.  Spokane is really the first place I have ever felt that I was “home” in.  It just seems to be in my blood that this is where I should be.  I never really missed Grand Lake.  There were a lot of memories there – some good, some not so good – but it was just a place I lived as a kid.  Then my stepmom Sandy died and wanted her ashes spread in Grand Lake.  So I headed back to that little town and something weird happened.  I realized I missed it.  Really missed it.  The mountains, the lakes, the quiet, the creaky sound of the boardwalk as I walked through town.  I felt like I had come home, which I had.  Then I realized I’m a dual citizen.  I’m a mountain/city girl.  How is that possible? 

That was in August 2012 and ever since then I have had an internal battle going on.  I love Spokane, but I hear the wide open spaces calling me.  It’s the old saying – “You can take the girl out of the mountains but you can’t take the mountains out of the girl.”  I know in my head that we can’t really move off to the mountains.  With a kiddo like Jackson I want to make sure we are close to good medical centers, doctors and therapists.  I also want to be in a place where the ambulance can come quickly if need be.  Not 30 minutes away.  But I feel a change coming.  Last weekend the kids and I were shopping at Costco and I saw this book called “Farm Anatomy, The Curious Parts & Pieces of Country Life”.  I just had to have it.  I showed it to Kevin when we got home and he looked at me and said “Who are you?”  I don’t know!  I’m a city girl who all of the sudden wants to buy some acreage, have some pigs, goats, chickens, rabbits, and maybe even a cow who all live in a big red barn that has a hay loft where I could go read a book.  I want mud boots.  I want to work the land. I want to get up early and feed the animals.  I want to plant a giant garden and share it with my neighbors, who don’t live 15 feet on either side of me.  The great thing about Spokane is that it is a city that is somewhat contained.  There are wide open spaces just a few miles out of the city limits.  In fact there are thousands of acres of rolling hills in the beautiful Palouse less than a half hour away.  Can we find some land close to town that will satisfy my dual citizenship?  Do we move west where there are giant mountains, ocean water, the Capitol building and new beginnings?  Or is Colorado calling me back home?  I don’t know nor do I know why I am even writing all of this.  Maybe I just needed to vent my internal battle and throw it out there.  Or perhaps I’m vocalizing this feeling that I’ve had lately that big changes are ahead for the Klim clan.  Whatever it is I have said it out loud and thrown it out to internet land.  As James Thurber said “It is better to know some of the questions than all of the answers.”  Now let’s see what happens.