Ice Bucket Challenge

Unless you live in a cave chances are you have heard of the Ice Bucket Challenge.  This campaign has been going on over a couple of weeks now in an effort to bring awareness and fundraising to ALS (aka Lou Gehrig’s Disease).  Hundreds of thousands of people have participated, including me.  Recently there has been a lot of talk about how it is just a “fad” or “Why is it only for ALS?  Other charities deserve money too”.  Some have commented they are sick of the videos.  I get it.  The challenge has exploded into something I don’t think anyone planned for.  While everyone is entitled to their opinion, I am going to share mine in the form of a story.  It isn’t pretty or a happy feel good fluff story.  So if you want one of those I suggest you stop reading, now.  If you want a glimpse into what ALS is, keep reading.

My Dad and step-mom Sandy used to live about a ½ hour from me.  One summer we noticed Sandy was slurring her words.  Sandy insisted she was fine.  Dad and I talked about it a few times when she wasn’t around, we were both worried.  In addition to the slurring, she was stumbling a lot.  We thought she might have had a stroke.  She finally agreed to go to the doctor and he ruled out a stroke but didn’t have any idea what was going on.  She continued to get worse without any reason why.  Then my Dad died suddenly.  Sandy was living alone and I was worried about her so I tried to go over to visit more and we had her come over one night a week for dinner.  One night when she was here she tripped, 3 times.  She had become so unsteady on her feet, something was very wrong.  Another night she dropped her plate and chipped a piece out of it.  I still have it.  Every time I use it I think of Sandy and I say quietly to myself “Life is too short.”  It is a good reminder.  Finally, with the help of her brother and sisters Sandy started trying to find out what was happening.  I had been doing a bit of online research myself in an effort to find a diagnosis that might foretell what was going on.  At one point I came across ALS.  I remember briefly reading about it and thinking Sandy was really exhibiting some of the early signs, but there were other things she was exhibiting too.  I didn’t give it much thought.  Then she went to an appointment and the doctor mentioned ALS and wanted to take a chunk of muscle tissue from her arm to be tested.  That night I sat down at the computer and began learning about ALS.  After an hour of reading, I knew what was happening to Sandy.  And I knew she was going to die. 

A week later I took Sandy to the hospital for her surgery to remove the piece of muscle from her arm.  As we were in pre-op the nurse came in to get vitals.  Sandy told her she didn’t think she needed to do the procedure because she had a stroke in her mouth, not ALS like the doctor said.  The nurse looked at me.  I just smiled and shrugged my shoulders.  A stroke in her mouth!  That Sandy could come up with some great stories!  Later the nurse said that the doctors felt pretty certain it was ALS, I responded “So do I.”  A few weeks later the results were in.  It was ALS.

Sandy decided to move back to Colorado, her home, to be near her son and brother.  It was heartwrenching to have her leave.  I wanted her to stay so I could take care of her.  I found a retirement living center just blocks from my house and wanted her to move there.  She was determined to go home to Colorado.  One thing about Sandy was once she got an idea in her head there was no changing her mind.  Off she went to Colorado.  She moved in with her son and he began the gigantic task of taking care of her.  For a few months I would call and talk to her on the phone.  Then she lost the ability to speak.  So I would call and talk and she would just make grunting sounds back.  Finally I stopped calling, it was just too hard for me.  If you knew Sandy you knew this, the woman could talk, a lot!  Sandy was a talker.  Constantly asking questions, telling stories, talking to just talk.  Talk, talk, talk.  I guess if there was any solace in this it was that even though Sandy lost her voice she had talked enough for at least two lifetimes throughout her life!  To know someone as a talker, then watch them lose their voice, is a painful thing.  You don’t realize how powerful a voice is until it is gone. 

I tried to visit as much as I could, but with a child with special needs at home and a husband who worked full time it was hard.  Every time I visited I could see her body deteriorating.  At one point Kevin, Jackson and I went down for a visit.  It was during that visit I realized there wasn’t a lot of time left.  Kevin and I decided that Sandy had to be a priority and I would go to Colorado once a month to spend time with her and hopefully give Mike a little break.  By this point Sandy used a walker to get around and she had a feeding tube.  I always thought it was ironic that I had a child with special needs, but it was my stepmom who had the feeding tube.  I hated that thing.  Sandy was such a pistol about it.  She liked to control the valve, so I would inject the liquid food (which was stinky and sticky by the way) and she would turn the valve on and off.  I never could figure out if she was just messing with me or did it accidently but she would always turn the valve at the wrong time and the liquid would go everywhere, except into her!  She desperately needed that because the once stout little woman I knew growing up was as thin as a rail.  She was at least half the person I grew up with.  Her weight loss wasn’t the only thing.  Watching her use a walker was horrifying to me.  Sandy wasn’t a sitter.  She was always go, go, go.  My Dad used to say “Good god woman just sit down for 5 minutes!”  She was rarely ever sitting.  She was taking the dog for a walk, delivering Meals on Wheels, working at the Senior Center, working at the Senior Center Thrift Store, gardening in her yard, making dinner for the Eagles Lodge, going to Curves for a workout, running errands, volunteering at her church daycare, playing the piano at church.  Sandy was a woman on the go.  Watching her sitting down all the time and needing a walker to move around was awful.  My last two visits with her she was in a wheelchair.  Every time I wheeled her around in it I had to hold back tears. 

Sandy didn’t like to go out and about anymore except to the movies.  The 6 months before she died I went to see more movies than I probably had in 20 years combined.  On the way home she always wanted to stop at McDonald’s and get a cheeseburger.  Although she wasn’t supposed to eat or drink because she could choke to death she just wouldn’t give up trying to eat.  Even though I knew she shouldn’t be eating I would still stop and get the cheeseburger.  I can’t imagine never being able to eat again.  I knew it was hard for her to accept so I just went along with her.  She was dying and I wasn’t going to say no. 

The last couple of visits with Sandy I knew her life was ending soon.  She had become increasingly weaker and spent most of my visits just sleeping in bed.  Her breathing was more labored and the light was gone from her eyes.  The second to the last time I saw Sandy I sat down with her and said my goodbyes to her.  We both cried.  She knew it was coming and so did I.  On my last visit to see Sandy I brought Jackson with me.  She was amazed at his progress and kept clapping every time he sat up by himself.  She sat there just watching him and smiling.  She died two weeks later. 

I’ve left a lot out of the story because if I wrote it all it would be 10 pages long.  There were a lot of things that ALS did to Sandy.  It robbed her of so much and then took her life.  Watching ALS kill Sandy those last 6 months is something I will never forget.  It was incredibly painful to watch.  I have no doubt watching someone you love die from any disease is painful.  The sad truth is that I never really had heard anything about ALS.  I didn’t even know it as ALS, I knew it as Lou Gehrig’s.  When I tell people about Sandy and how she died, typically if I say ALS I get a blank stare.  If I say Lou Gehrig’s Disease they have at least heard of that, but most don’t know anything about it.  That’s what this ice bucket thing is about, bringing awareness.  While it is estimated that approximately 30,000 people have this disease at any given time in our country, it is a low number compared to the 50,000 a year diagnosed with Parkinson’s or the 15 million with cancer.  That is why this campaign has been so amazing.  How many of you had heard about Lou Gehrig’s?  How many of you knew it was known as ALS also?  How many of you knew what ALS was?  Have any of these answers changed since the campaign?

Estimated funding for research for ALS is $40 million, Parkinson’s $139 million, cancer is in the trillions.  While I get that the more people with a disease the more funding comes with that, I just have to say, when you know someone who has died from ALS, you want the same funding as others, you want the same recognition of that disease, you want people to know about it and to be motivated to do something about it.  You want their story told. 

So while some may be critical of the campaign and the recognition, I am loving it.  ALS is out there, reaching millions, earning millions for research and support.  I have watched countless ice bucket videos these past couple of weeks and every one of them make me smile.  It makes me think of Sandy, I wish she was alive to see them.  Sandy, I have no doubt, would want everyone to know about ALS and what it does to those who have it.  I know I do.  I realize that to some the challenge may just be a fun thing to do.  Fine.  Let that be it.  But to many it has brought ALS into the forefront and has earned the recognition of many.  So keep those videos coming, they bring me a little joy every day.  But most importantly take a minute to learn about ALS and the people that have it.    

He's Jackson, Not Polymicrogyria

I’ve read a couple of articles lately that parents and doctors have written about seeing the child, not their disability.  It is sad to me that these articles even need to exist.  It does bring up the discussion though.  A discussion that I have been secretly having with myself for a while now.  I have it pretty much every week at Costco.  I call it the “Costco People Meter”.  Is the world in a good place?  Is the world a negative place?  I get my answer by the looks Jackson gets while shopping and eating at Costco.  If we get stares and strange looks, then I know the world is in a bad spot.  If we get smiles, people stop and say hi and/or mention how cute he is, then I know the world is good and people are kind.  Mostly I have found the world is good but there have been negative days for sure.  Then Monday Jackson and I went to Costco.  Just a typical day.  And we found that the world was in a spectacular place.  Our typical trip to Costco turned into so much more.

When we got there the eating area was relatively empty so I wheeled Jackson up to a table to save a spot for us and I got in line to order food.  He was close to me so I could watch him.  I noticed a family a few people ahead of me in line.  I noticed them because they seemed really loving toward each other.  It was a father with 3 sons and a daughter.  All the kids were in their late teens, early 20’s.  They were all hanging out with their arms around each other and you could tell they were very close.  Their Dad finally went up to order food and the boys headed over to the table next to Jackson.  Then one of the boys saw Jackson, got up and went and sat at our table.  He said “Hey little man, how you doing today?”  I just watched.  Then another one of the boys came over to our table.  He saw Jackson’s drooling messy face (new teeth coming in), got up and went to get napkins, then came back and wiped his slobbery chin.  I laughed and thought “Who does that?”, it was such a kind gesture.  I got Jackson’s hot dog and headed to our table thinking that once I got there they would probably leave.  Thankfully they didn’t.  The first boy who sat down was enthralled with Jackson.  He asked his name and the whole family chimed in to say hi to Jackson.  He asked all kinds of questions about him.  How does he communicate?  How old is he?  What is his favorite food?  The mom finally showed up with her cart of food, came right over to see Jackson, gushed about how cute he was and how he reminded her of Dayton.  I asked who Dayton was.  Dayton is the best friend of the boy who sat down first.  That was why he sat down next to Jackson.  He said he reminded him of Dayton, who has cerebral palsy.  They told me how Dayton has been doing triathlons and even Iron Man’s with the help of a partner.  We sat there and talked the whole time Jackson ate.  I found out they had just flown in from Alaska, the older brother was getting married the next day.  The whole family continued to fuss over Jackson and comment on how awesome and fun he was.  Then they asked if they could have their picture taken with Jackson.  They wanted to have pictures with the cool kid at Costco.  We finally had to reluctantly leave the wonderful Alaskan family.   

Meeting this kind family reminded me that there are exceptional people out there that don’t see a kid in a wheelchair, they see a real person with love and happiness to share.  They didn’t see Jackson as broken or different.  They just thought he was a cool, fun kid.  Which he is.  Jackson has a personality, his sounds are his way to show his happiness, his sadness, his anger.  His laugh and smile bring inexplicable joy.  If everyone looked past that wheelchair they would be graced with the opportunity to spend time with an amazing person.  His life is valuable, it isn’t a second rate existence.  He loves attention, so say hi to him, even if he doesn’t say it back.  Look into those beautiful blue eyes of his and see what a great soul he has.  The kid just rocks.  He is the best gift I have ever experienced.  He is Jackson, a 6 year old little boy who loves Costco hot dogs and being tickled.  Just like a lot of other 6 year olds. 

If everyone would just remember what Wayne W. Dyer said “Change the way you look at things and the things you look at change” then I imagine those with disabilities would forever be accepted into our society. 

*Here are links to videos about Dayton and his first triathlon and his Ironman.

https://www.youtube.com/watch?v=bwwxBjpvDVQ

https://www.youtube.com/watch?v=4ggirkEUoPE

Crisis

It’s been over a month since I have had time to sit down and write on my blog.  Sadly, it takes an extra hour in the airport to allow me time to do so.  I don’t know why they call it “summer vacation”, because any parent who stays home in the summer knows that it isn’t any kind of vacation a sane adult would willingly take.  Not without a lot of medication anyway.  But I have spent the last 3 days in Seattle for the Washington State Developmental Disabilities Council Board meetings and have had a hotel room to myself at night so it has been a mini vacation for me.  Now I sit here waiting for the plane to take me back to my “summer vacation”.  Having a few days to use my brain in a constructive way and reflect on a few things has let me recharge my battery a bit.  It’s been a busy month and our family has entered into a crisis.  As with any crisis, it is one I wish I wasn’t having and wish someone would give me an answer to. 

We just got home last week from our annual summer vacation to Florida.  We had a great time.  The kids were in the pool every day, we swam in the ocean, we went to an amusement park in Orlando, Kevin and I both got massages and had a date night, and we ate a lot of food we shouldn’t have because we were on vacation (although the break from cooking was wonderful).  Jackson had a couple of seizures while we were in Florida that were scary.  Both lasted about 4 ½ minutes and wiped him out afterwards.  It is so hard to watch him seize.  Those 4 ½ minutes feel like 4 ½ years.  We also discovered that Jackson is a bit of an adrenaline junkie.  At the amusement park he rode quite a few rides and laughed joyously as he rode them.  A kiddie rollercoaster was his favorite so we rode it 4 times.  He had a great day and it was fun that he was able to ride some of the rides.  I think the best part of the day was the amazing service we got from the staff.  When you have a child with a disability you discover that a lot of places aren’t all that accessible and if you need accommodations people can sometimes be unpleasant about it.  This park, Fun Spot, had a wonderful staff.  Kevin’s cousin had actually won tickets for us to go.  We had 4 tickets so we had to buy one more for Jackson.  When we got there to buy our ticket we asked if they had any kind of disability pass since Jackson wouldn’t be able to ride very many rides.  The customer service rep went and got the manager who came over and said he would just give us a day pass for Jackson, we didn’t have to pay at all!  It was such a sweet act of kindness, one we weren’t used to.  Then when we went to the “kiddie rides” an employee working there walked us around to all the rides and helped us to decide if Jackson could ride.  The staff there made it such an incredible day for us.  I was so grateful to them for making it a day that Jackson could enjoy too. 

Unfortunately, it was while we were in Florida we discovered that Daniel has been hurting Jackson physically and doing things like putting Jackson’s food out of reach so he can’t eat and taking toys away from him.  It was a blow.  About 2 months after the kids came to live with us Daniel hurt Jackson one day while we were out rock climbing.  He twisted his arm which made Jackson cry out in pain and it eventually bruised him.  At the time we had a long talk with Daniel about how he is supposed to protect Jackson, not hurt him.  We discussed the responsibility of being a big brother to Jackson and being part of our family.  That was also when some of the attachment issues with Daniel came to light.  We thought we had put that behind us and that Jackson was safe.  Now we know it isn’t behind us and has continued.  I’m so mixed with emotions right now that I can’t even really explain all of them.  I am mad, I feel like I have let Jackson down by not protecting him, I am sad, I am numb.  Kevin and I have spent the last year working our butts off to make us all a family.  It’s been a ton of work.  Having two older children come live with you is not all roses.  They bring a history with them that you know nothing about.  They have formed their personality and some opinions.  They have been through trauma that we don’t know the extent of.  Getting through all that, trying to make a connection with them, and trying to create a cohesive family is an on-going task.  We knew it would be hard, but we were willing to put in the work.  This has been our dream all along, to adopt children out of the foster care system.  To give an “unwanted” child a home where they are wanted.  Now I question what the cost is for doing the right thing.  If the cost is Jackson has to be in danger of physical harm in his own home then I am not willing to pay that price.  And therein lies the problem.  Where do we go from here? 

I wish I knew.  The social worker had a few ideas but mostly they were just band-aids on the wound, not fixing it.  The wait list to get him assessed by a neuro-psychologist, which is what we want, is 3 months.  I’m not waiting 3 months.  We need to know if this is a pattern of behavior for Daniel, if there is something we can do to help stop this behavior.  We need answers.  In the meantime we live in a constant state of worry and fear.  I can’t go to the bathroom without taking Jackson with me.  I worry about turning my back for even one second.  I can’t live like this, it’s too much.

The truth that is hard to admit is that my feelings toward Daniel have been damaged.  I find it hard to be loving and compassionate towards him.  He has always been a difficult kid who demands constant attention.  He probably gets 80% of my time which doesn’t leave a lot of time for Sylvia and Jackson.  He demands 100% of my time and I just can’t give him that.  He can be such a sweet, giving little boy.  But he can also turn his feelings on and off easily and that worries me.  I don’t want to turn my back on him.  But I need to know that this behavior, these warning signs, are something that can be addressed.  In many ways I feel like I have failed Daniel.  That I am not the mom he needs or deserves.  He needs someone who can give him their full attention.  When Kevin and I talked about the type of child we were looking for I distinctly remember saying that I didn’t want a child with special needs.  We had one and that was enough.  Now we have two and it is too much.  I’m not at my best with Daniel.  I don’t like myself some days as his mom.  I feel stern and demanding and unloving towards him.  This is all so hard to admit.  So many of our friends think that we are amazing and wonderful for parenting Jackson and then taking in Daniel and Sylvia.  The truth is I am not amazing and wonderful, I am just a mom who doesn’t know what to do.  I’m lost and having trouble finding my way.  I am faced with the realization that perhaps this isn’t going to work.  That our home and family may not be the place for Daniel and Sylvia.  It is scary and heartbreaking.  We have made a commitment to him and his sister.  We were serious and dedicated to that commitment.  Now I am not sure where we are.  I can’t make a permanent commitment when Jackson’s safety and well-being are at stake.  If he was a neurotypical kid who could fight back and tell me what is happening, I could probably deal with that.  But he can’t defend himself and he can’t tell me what is happening to him.  And I can’t turn my back and not protect him. 

Muhammad Ali said "Often it isn't the mountains ahead that wear you out, it's the pebble in your shoe."  I knew taking the kids in would be one of the biggest mountains to climb yet.  What I didn't anticipate was this pebble.  No matter how hard I shake the shoe it won't come out. I don't know how much further I can walk with it. 

 

Moving Onward and Forward

I’m sitting here in my favorite place in Spokane, the Rockwood Bakery, enjoying what may be my last “bakery day” until next school year.  In an hour or so I will head back to Jackson’s school for his preschool graduation.  It seems that not too long ago I walked into this bakery after dropping Jackson off at preschool for the first time.  I vividly remember my nervousness about leaving him at a real elementary school with a bunch of strangers.  I also remember sitting in my car and thinking to myself “I have no idea what to do for the next 2 ½ hours!”  Both of those feelings were short lived.  Jackson loved school and I loved my free time.  But looking back today I am amazed at how far both Jackson and I have come. 

When Jackson first started preschool he was still having those awful seizures.  Getting him to retain anything was nearly impossible.  Now those seizures are controlled and the kid is doing stuff at school that amazes me.  He has been raising his hand during circle time to pick songs.  He roams the hallways in his walker and bicycle admiring the art on the walls from the elementary school students.  He knows he can’t outlast his teachers and will do the work he needs to do.  He’s figured out how to rock his chair forward and tries to race the other kids in their chairs.  He is the class clown, according to his teacher, and is always making the other kids laugh.  If he was neurotypical I would discourage that behavior, but he really is funny and making others laugh is a good talent to have so I say “spread the laughs Jacks.”  He is always so excited to go to school and to spend time with the other kids and his wonderful teacher and aides.  I am so proud of how far Jackson has come.   He has made tremendous progress. 

Jackson will be going to a different school next year for Kindergarten.  He will be in a Designed Instruction class.  They don’t have that program at his current school.  It is going to be hard to leave, his Principal has been wonderful in working with us on things we need and supporting the special education preschool.  Together he and I worked to get a handicapped front door installed.  We also tried getting parents to stop using the handicapped parking spots to drop off their neurotypical children (I say tried because there are still some very insensitive and ignorant parents who think it is okay to do this).  His teacher Liz has gone above and beyond to make sure Jackson is doing what he should be doing while developing independence.  We have been so lucky to have such a great support system at school.  I am so grateful for the last 3 years at Roosevelt Elementary. 

I’m nervous and excited to start this next chapter in Jackson’s life.  Last week we went up to his new school for a move up meeting with the teachers and therapists and then came back on another day to tour the classroom.  It went well.  I think Jackson is going to do great in this school and classroom.  It’s going to be a challenge and won’t be as easy as preschool has been.  It will push him on a lot of levels and I think it will be good for him and for me.  I’ve babied him a lot and done a lot for him when he should be doing it.  It’s time for him to start learning how to do things for himself.  I know there is going to be a period of adjustment and I can already sense the protests he will be putting forth.  But onward and forward he must go. 

For me the realization that I am now going to have whole days to myself is a bit overwhelming.  Over the past couple of years so much has come into my life as far as advocacy work and community projects.  There is an abundance of things I want to do.  It will be a new chapter in my life.  One that I am anxious for.  I can’t believe how lucky I have been these last 6 years being able to be a stay at home mom and being there for the kids whenever they need me.  I’ve truly enjoyed it and am forever grateful to Kevin for working so hard so that I can stay home.  But now I am ready to do something different, to give back to our community and to help other parents.  Onward and forward I will go.

As Kurt Vonnegut said “We have to continually be jumping off cliffs and developing our wings on the way down.”

Blink and Things Change

That old saying about taking time to enjoy every day because if you blink the day is gone is the story of my life lately.  I have no idea how the time has passed so quickly.  The last month has been a whirlwind of activity, milestones and change. 

Let’s start with the milestone.  Jackson lost his first tooth!  It was a shock to me because his dentist had told us that kids like Jackson with developmental delays tend to lose their teeth a lot later than typical children.  One night I brushed his teeth (which looked like they always do) and put him to bed.  The next morning after breakfast I went to brush his teeth and his tooth was barely in his mouth.  For the record, I don’t do well with the teeth thing, it makes me queasy.  I yelled for Kevin who tried to pull it but it didn’t come out.  About two hours later at school his teacher just barely grabbed it and out it came.  It was a great day at the Klim house.  Sylvia and Daniel were so excited for Jackson and kept telling him about the tooth fairy and how she was going to be bringing him a dollar.  It was so cute.  We all kept wondering what Jackson must have thought about it.  Jackson goes to the dentist today for his yearly checkup and I can’t wait to tell the dentist he lost a tooth.

The last two months entailed the throwing of 3 birthday parties.  All 5 of us have our birthdays in a two month period.  It was an exhausting two months planning, shopping and preparing for the parties.  But it was worth it.  The kids hadn’t ever really had a full fledged birthday party (that we know of) so I wanted them to have a good one.  Daniel opted for a Superman theme and Sylvia went with a dog theme.  She also had a sleepover with all her best girlfriends which Kevin and I managed to somehow survive.  Jackson had a farm theme and instead of gifts we asked for monetary donations to Free Rein, the non-profit organization where Jackson rides horses.  Our amazing friends and family brought in $379 for Free Rein.  All in all the parties went well but I am happy they are over!  If I don’t see birthday cake for another year I will be just fine with that.

A couple of weeks ago I was able to attend the Infant and Early Childhood Conference in Tacoma, WA.  I received a scholarship from the Arc of Spokane to attend.  The conference was focused on children with special needs.  The classes were amazing and I came home with numerous ideas on how to work with Jackson and other families.  I feel so lucky to have opportunities like this.  The quality and content of what I learned is another reminder of how Jackson has improved my life.  And of how important it is that I take what I learn and pass it on to other parents, so that they have the tools to help their children be successful.  It was also another reminder that I have found my “button” (I’ll explain later).  Helping families with special needs children is how I want to spend the rest of my life.  Whether it is through support, as a resource, an advocate or as an educator, I simply want to work with parents.  Which is ironic in a way.  When I was in college getting my teaching certification, I had to choose a minor.  I chose Parent Education.  I figured as a teacher I would be working a lot of with parents.  Now here I am in a position to actually use that degree.  Life has a funny way of working out. 

So the “button” comment.  One of my favorite things this past month has been the opportunity to attend the Women Helping Women luncheon here in Spokane and hear Chris Gardner speak.  You may remember him from the movie “The Pursuit of Happyness”.  Will Smith played him in the movie.  He was a fabulous speaker and such an inspiration.  I took many things with me from his hour long talk but a few stand out.  First, the “button”.  He talked about how we all have a button (our purpose in life).   Sometimes it takes a while to find our button.  Sometimes we know from an early age.  But when we do find our button, our next obstacle is pushing it.  It takes courage to push that button and follow your dream.  I know I’ve found my button, and over the last year or so have been putting my button together.  Once Jackson starts school next year and I have the days to myself, I will push it.  I can’t wait. 

One of the other things I came away with was from a very touching story he told.  Last year the love of his life passed away.  He quit the business he spent most of his life building so he could be her caregiver.  He talked about the responsibility and importance of being her voice, when she couldn’t speak for herself anymore.  It hit home for me because I am Jackson’s voice.  It is an awesome responsibility.  But one I am proud to do.  When the person you love more than anything can’t speak for themselves, it is up to you to do that for them.  You must make sure they are heard.  A voice is something so many of us take for granted.  But we really shouldn’t.  It is a powerful gift that demands our gratitude.

Lastly, change.  I have said this before, and I’ll say it again.  I hate change.  But change is what is happening in our house right now.  For the last year and a half we have had the same caregiver for Jackson.  She hasn’t always been dependable but we have adjusted to that because Jackson loved her and she him.  Over the last month or so it has been a crapshoot whether or not she will show up for her shift on time or at all.  While I was at the conference she flaked out on my husband and didn’t show up when he needed her.  Then she didn’t show up again the next week on me, twice.  It was just too much, we let her go.  It’s hard enough having a child who has special needs to have to deal with the irresponsibility of others.  Those of us with special needs kids who qualify for services are so overwhelmingly happy to get those services.  It is a blessing.  Every parent needs a break and a little help.  But getting quality services is nearly impossible.  I don’t know why it has to be so difficult.  So for the past two weeks I have been on my own with Jackson.  He now goes everywhere I do.  It’s a lot but in a way I know I will miss him next year when he is at school so I am enjoying it.  He’s a pretty cool little kid to spend your day with.  Whether or not I will be enjoying it in a couple of weeks is a different matter.  I may be ready to lose my mind with the non-stop care.  The search for a new caregiver has begun but it is a long process so we will see if anything pans out for the summer.  

In the meantime, I leave you with this quote that in no way pertains to my post today.  It’s just fun.  “Be who you are and say what you feel, because those who mind don’t matter and those who matter don’t mind.” – Dr. Suess

Happy 6th Birthday Jackson!

Today my baby turns 6.  It’s hard to believe it’s been 6 years.  I remember that day like it was yesterday…..

Jackson was a bit overdue and I was a bit overdone with being pregnant.  Really done, completely over the pregnancy thing.  I was in “get the kid out of me now” mode.  We checked into the hospital at 6 a.m. to be induced.  For the record we didn’t know if the baby was a boy or girl.  We were excited to find out if Jackson or Kira was going to be the new name in our family.  We got to the hospital and the nurses were getting me settled.  I was scared and nervous since I had never given birth before.  The young nurse took my blood pressure.  It was a little high, which was weird because my whole life I have had perfect blood pressure.  She said “Are you nervous about anything?”  I thought to myself “I’m not even in labor and already I want to scream and grab someone hard.”  Thankfully that nurse was at the end of her shift.  I’m pretty sure I couldn’t have dealt with her all day.  When they hooked me up to the contraction machine it turned out I was already have contractions.  I just thought it was the baby moving.  At that point I thought “That’s a contraction?  That’s nothing!  I could do that all day.  What’s all the fuss about with contractions.”  A few hours in I wanted the drugs.  I wasn’t one of those superwoman types who was going to tough it out.  If some scientist/doctor took the time to develop a drug to help with the pain, then by god I was going to support them and use it.  In came the epidural.  Of course it didn’t work like it was supposed to.  I could still feel everything in “that area”.  However, my legs and all feeling in them were gone.  My body no longer recognized that I had legs.  Thankfully Kevin and my sister were in the room to grab those things and put them up at the right times.  I couldn’t get out of bed and move around because I had to be attached to the blood pressure machine the whole day.  It was a good thing because I couldn’t have stood up on my legs anyway.  Those easy contractions were no longer easy.  NOW I got what all the fuss was about.  My sister put a wet cloth on my head to cool me down and I was like “GET THAT THING OFF ME!”  Kevin in his calm and collected voice reminded me to breathe.  I, in my pissy labor mode said “DON’T TELL ME WHAT TO DO!”  The contractions were exhausting and I remember falling asleep between them, only to be awakened violently by them.  My sister and Kevin kept looking down and could see the head.  They were both excited about it.  This was infuriating to me.  I was doing all the work and they were having all the fun.  So I asked for the big mirror so I could see too.  Which was really weird since I have a weak stomach and can’t stand the sight of blood or any kind of wound or injury.  But being able to watch Jackson being born was one of the coolest things ever and it was a great motivator to push.  Finally at 4:39 p.m. Jackson Edward Darwin Klim entered the room.  He looked like E.T.  I’ll never forget the look on Kevin’s face, peace and utter happiness and joy.  The first time I held Jackson I whispered to him “So you’re the one who has been kicking the shit out of me for the last 4 months.  You are in big trouble mister.”  He was so cute, pale and wrinkly.  My parents arrived at the hospital a few minutes after he was born.  They came in and it was a great happy moment.  I loved seeing my Dad hold Jackson for the first time.  He was so proud.  He had the biggest smile I had ever seen on him.  Jackson had high apgar scores and the nurses and doctors all proclaimed him to be “wonderful”.  6 years later he still is.

Every time I held Jackson I remember having this weird feeling of “What have I done?  What do I do now?”  I often have wondered if I didn’t have some postpartum depression because I never seemed to be madly in love with Jackson right away.  I was ambivalent about being a mother for a while.  Sometimes I was just annoyed by him waking me up every two hours and needing to eat.  I think he was about 3 or 4 weeks old when I had put him down in his crib to sleep.  And BAM, it hit me.  Suddenly I felt like my heart was going to explode, I started crying and realized how much I loved that little sleeping baby.  There is nothing like the love you have for your child.  I think of that sometimes and feel sad that Jackson will never get to experience that love.  After I realized this great love for Jackson, I called my Dad and apologized for every mean thing I said and did to him.  He just laughed and said “It’s alright honey.”  Just like a parent who has that great love for their child.

Lao Tzu said “Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”  Jackson is a testament to this.  I had no idea the journey ahead of us when he was born.  But I know this – I am a much better person since becoming his Mama.  I have a life I never envisioned.  A life that is substantially greater and rewarding because of him.  Jackson is not the little boy I thought I was going to have.  In fact, he is much better than I imagined.  Happy Birthday Monkey!  Thank you for being my little boy. 

Burned Out

I am burned out.  I’m exhausted, mentally, emotionally and physically.  It seems like I have been going non-stop for weeks with the kids.  I know this is part of the deal with being a mom but there are days where it just catches up with me and today is that day.  I’m at the point where I either need to have a good cry or just say “screw it” to everything that comes my way.  I’m going with “screw it”. 

Last week was the dreaded spring break week.  I hate spring break!  Of course we can never go anywhere because Kevin’s spring break is two weeks before the kids’.  So I am home with 3 kids who seem to think that spring break means they get to do whatever they want, whenever they want.  Which inevitably means they will argue.  Over everything.  Who brushes their teeth first, who lets the dog out to go potty, who picks the movie they are going to watch, who gets to give Jackson a toy, whose cup has more water in it, who gets to get the mail, who touched a toy first.  You get the idea.  An hour of this arguing is annoying.  A day of this arguing is infuriating.  7 freaking days of this is enough to warrant self admittance to a psychiatric ward.  The second day of spring break Sylvia had to go the dentist in the afternoon.  As I was checking her in the receptionist said “How are you today?”  I said “It is the second day of spring break.”  She put her pen down, looked at me and said “How are you doing?”  I said “I wish I liked the taste of alcohol so I could drink.”  She laughed and said she knew how I felt.  Her kids were grown, but she had been there.   At least there is a sense of camaraderie amongst us moms.

The worst part about being burnt out is that I lose all patience, and I don’t have a lot as it is.  I get tired of listening to the kids, I get snappy with them, I begin feeling detached from them.  I hate that about myself.  My light switch just goes off and I am too tired to turn it back on.  Yesterday, the first day back to school the kids were in the bathroom arguing over who got to put toothpaste on their toothbrush first.  I heard them and was just waiting for the referee call.  Sure enough Sylvia came out and started to complain and I just snapped back and said  “Sylvia, for 7 long days I have had to listen to you two argue over everything.  I’m done.  I’m sick and tired of the arguing.  You two figure it out.  I don’t care anymore.”  She looked deflated and went back to the bathroom.  I thought “there goes my mom of the year award and I couldn’t care less!  I’m sick of being a mom.”    I really am.  I don’t feel motherly or loving or that I even want to be anymore.  I just want peace and quiet and to sit and read a book that isn’t about the brain, behavior problems, or how to be a good parent.  I want to be on a beach, sipping lemonade, sitting in the warm sun, listening to the waves and reading some mindless novel about someone else’s life.  For a whole day!  With no one calling my name, no one needing to be fed, or diapers to change, or errands to run, or bills to pay, or appointments to go to.  Sadly there is no beach on this side of the state.  However, tomorrow night I am headed to Seattle for a couple of days for the Developmental Disabilities Board of Directors meeting.  I will have two nights in a hotel room and two days of being around adults, learning new things.  It sounds heavenly and I am grateful for the break.  Hopefully my batteries will be recharged and I won’t be the bitchy mom anymore.  There is a light at the end of the tunnel.

As I sit here and write this post I have to be honest and say I feel guilt for writing it.  I’m bitching about how I am sick of my life and tired.  But right now my friend Vicki, who is a special mama like me, is lying in the hospital fighting for her life.  So is her little boy.  Her little boy had to have major surgery last week.  As he was trying to heal and fight to get better in the ICU, Vicki had a massive seizure that landed her in the ICU.  It took a few days (scary days) but she is breathing on her own and they moved her out of ICU yesterday.  She is on the long road to recovery, as is her boy.  When you have kids like we do, you develop a unique bond because we just get each other.  We know what our lives are like.  We know what it is to grieve over a child.  We understand the special joy our children give us.  It’s a different kind of friendship, one that I am so thankful for.  Having a friend like Vicki is a gift that Jackson gave me.  And she is a gift of friendship to me.  I can’t wait for the day when I can take her to lunch and just tell her that.  Keep fighting Vicki!  You got this Mama!  I love you girl!

In honor of Vicki and in the spirit of my complaining post, I leave with this quote by Helen Keller “The world is full of suffering; it is also full of overcoming it.”