Holiday Craziness

It’s Christmas Eve and we are in sunny (actually it’s raining) Florida for the holidays.  Family is arriving, shopping is done, presents are wrapped, and food is being prepared.  It’s the most glorious time of the year.  That’s what’s advertised anyway.  Our non-traditional family, with foster kids and a child with special needs, doesn’t always follow the typical holiday customs.

One thing about having children who have lived a lot of their lives in dysfunction and the foster care system is that they have a skewed version of what the holidays are.  You don’t know why and they can’t really tell you why.  It’s frustrating to say the least.  What we do know is that behavior seems to be the outlet for their holiday anxiety.  Unfortunately for us it has been an issue of bad behavior.  The time out chair has seen a lot of action lately if you get my drift.  Despite my attempts to sit and talk things out in an effort to get some answer as to why the behavior is the way it is, I’ve got nothing.  I wish I could understand and help ease whatever it is that is going on in their minds but I can’t.  One good motivator is Christmas gifts.  You be good, one gift goes under the tree.  It has worked a little.  In my heart I feel for them because I know that it is a reaction to their past.  But on the other hand I am now their parent and I need them to understand that bad behavior is unacceptable and we won’t allow it.  I have to be the bad guy and that sucks!  They have only been with us for 9 months and I have to continually remind myself of that.  At this point we just have to get through the holidays and hopefully next year they will have a better sense that things will be okay for them.

One tough decision my husband and I had to make yesterday was to not give them our big gift.  The kids didn’t know but we planned to take them to Disney World for one day this week.  After this past week of bad behavior we knew we couldn’t reward them with such a fun opportunity.  It wouldn’t be fair to any of us.  I’m sad about our decision but I know it is the right one.  We could only afford one day anyway so now we have a whole year to save for another day and a hotel room.  Plus in one more year I think we will have a little more stability in our family.  In my quest to give them memorable experiences this year I think I forgot that having a new family might just be enough experience.  I mean a couple of years ago they were living in a tent having never left the town they were born in.  Now they are flying on airplanes across the country, seeing the ocean, going on boats, going to amusement parks, experiencing summer camps, and on and on.  It’s been an entirely eventful 9 months for them. 

Being a parent is hard, no matter who your child is.  We have to make tough decisions, enforce rules, be the bad guy, all while making sure they feel secure and loved.  A balancing act so many of us put on every day.  I hope for the kids’ sake that “Life’s most painful losses can lead to life’s most beautiful findings.” (Rusty Berkus)

Holland

There is an analogy that a woman named Emily Pearl Kingsley wrote about becoming a special needs parent called “Welcome to Holland” (I posted it on the blog a couple of years ago).  It’s about how you believe your journey as a parent is going to be like going to Italy.  Then you have your child and realize you aren’t going to Italy.  Instead you are diverted to Holland.  At first Holland doesn’t seem as great as Italy.  And while everyone else is going to Italy, you are stuck in Holland.  Slowly you realize that Holland isn’t so bad and has a beauty that others don’t see.  The other day I came across a follow up to “Welcome to Holland” called “Celebrating Holland – I’m Home”.  It’s written by a mom who has been in Holland for a while.  No matter how hard our journey is when we have special needs kids, I think most of us are able to get to a place where we realize that we no longer wish for Italy.  That as far as we are concerned, Italy is overrated.  The most beautiful country is indeed Holland.  Holland is where the action is!  Holland has a love like none other.  Holland is the hardest, most rewarding school where lessons are taught that we had no idea about.  Holland is beautiful.  I love Holland and the beautiful little boy named Jackson who took me there.    

Celebrating Holland- I'm Home
By Cathy Anthony
(my follow-up to the original “Welcome to Holland” by Emily Pearl Kingsley)

 

I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned. I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger, the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.

I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.
Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.

I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts.

I have come to love Holland and call it Home.

I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.

Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!

 

Thanks and Giving

Thanksgiving is my favorite holiday.  Other than the food, it isn’t over the board commercialized.  It is a day to sit down to a meal with those you love and spend your life with.  To look inside of yourself and realize your blessings, and to focus on what you have, not what you don’t.  What could be better than that?  It’s a shame we only have one day a year to focus on thanks.  We should all be doing this every day. 

The last 3 Thanksgiving’s have been tough for me.  Losing my Dad is something that still hasn’t healed in my heart.  Then we lost Sandy, my stepmom.  It’s blatantly obvious every year when we sit down to the table that there are 2 missing.  I feel that emptiness every year and it is hard for me.  I am sure it will be tomorrow too.  But this year those two empty spots at the table will be filled by two children.  Two children a year ago I never even could imagine.  Yet there they will sit.  With our family.  With their family.  They are super excited about Thanksgiving this year.  And so am I.  They have given me yet another reason to be thankful. 

I don’t have time to list everything I am thankful for.  I have a lot.  If you have read my blog at all this year you know I have plenty of reasons to be thankful - an amazing husband, 3 children who are beautiful in each their own way, family and friends who love and support us, a lovely home, a car to get us where we need to go, and a pantry full of food.  We have more than so many.  As we sit down to dinner tomorrow those I will be thinking of are those who have no table to sit at or no way to get to that table.  Our soldiers, the homeless, those without families, those living in poverty.  As Robert Louis Stevenson said “Keep your eyes open to your mercies.  The man who forgets to be thankful has fallen asleep in life.”  Happy Thanksgiving and I am thankful to all of you for reading my blog and sharing in my life journey!   

New Opportunities

I just finished reading this book written by a woman who unexpectedly had a child born with Down Syndrome.  The book is about the first year of her journey as a special needs mama.  She writes vividly about the pain, disappointment and grief she experienced the day her child was born.  It’s hard for me to read these kind of books because it catapults me back to the days following Jackson’s diagnosis.  Those feelings are forever etched on my heart and it’s a painful journey back.  On the other hand, it is healing to recall that dark period and realize how far I have come.  While I think I will always have a wish for Jackson to have a whole, healthy brain, I no longer grieve for the child I thought I was going to have.  I look at Jackson now and I am so proud to be his Mama.  He’s amazing.  I know strangers sometimes look at us, me strolling him around in his wheelchair, and I know they feel sorry for me.  I see it on their faces.  I always smile at them because I feel sorry for them.  They will never know the awesomeness of the journey of raising a child with special needs.  It’s a roller coaster journey filled with more emotions than most of us know we even had.  It is the best thing I will ever experience and it is the worst thing I will ever experience.  All packaged up in a beautiful little boy who thinks the sound of an air compressor is the funniest sound on earth and will roll on the floor laughing about it for 15 minutes.  I have shed too many tears to count, I’ve experienced physical pain in my chest from loving him so much, there have been endless laughs, heartbreak, and an indescribable joy.  All of this Jackson has brought me.  It is just the beginning of how this kid has changed my life. 

A little over a year ago I heard about this class on advocacy leadership that the Arc of Spokane was offering.  I signed up because I wanted to learn more about resources in our community and I wanted to become a better advocate for Jackson.  What I didn’t foresee was that it was going to change my life.  As the class progressed I learned more and more about not only advocating for those with disabilities, but I learned about those with disabilities.  It’s hard to advocate for someone or a group of people when you don’t have clear knowledge about their lives and struggles.  I realized that although I had a child with disabilities, I really didn’t know much about people with disabilities.  I’ve spent the last year reading, studying, and asking questions so that I can better educate myself on what programs and supports people with disabilities in Washington need and want.  In my effort to educate myself, I think I may have just found my calling and a purpose.  Something that helps me make sense of why I was given a child like Jackson.  Or at least has shown me what is possible when it seemed for so long that everything was going to be impossible. 

During this class we spent a weekend in our state capitol, Olympia.  I had never been to Olympia before nor had I seen our beautiful Capitol Building.  The first time I walked into that building I felt like it would become a part of my life.  And it has.  I spent about 5 days over the next couple of months walking the halls of the Capitol, meeting with legislators, listening to amazing speeches and in a truly amazing opportunity got to testify at a Senate hearing.  Over the last few months my involvement in advocating for disabilities has grown.  I have been working with the local hospital to try and get a program implemented for new parents of children with disabilities.  When your baby is born with disabilities it is a confusing and devastating time.  Having someone who has been in your shoes, a support system, and can help you access services your child will need can be a saving grace.  I want to be that person for local parents.  The hospital seems to like the idea too.  Hopefully in the next couple of months we will make my wish a reality.  I have flown over to Seattle a few times to participate in legislative and community meetings with the Washington State Developmental Disabilities Council (DDC).  I signed up to be part of a core planning committee member to start up a special education parent advisory council with Spokane Public Schools.  I am also working on creating a parent support network for those of us with special needs students in the school district.  But the most amazing opportunity I have had over the last few months was getting appointed by Governor Inslee to the Board of Directors for the DDC.  I can’t wait to begin working on the Board and really take part as an advocate for people with disabilities in our state. 

When I look back at the last year of my life I am awestruck at how much I have learned and how important advocacy has become to me.  All I sought out to do was become a better advocate for Jackson.  Now here I am advocating for so many others.  The best part of all of this is that I wouldn’t be doing any of this if it wasn’t for a little boy named Jackson.  He has given me yet another gift.  Something I will forever be thankful to him for.  I hope I can make him proud.  Joseph Addison sums it up best when he said “The grand essentials to happiness in this life are something to do, something to love, and something to hope for."

Those Kids of Mine

I remember watching some reality TV show a few years ago where the family had like 7 kids.  At the time I thought that it looked like so much fun to have a big family like that.  All those different personalities and chaos and laughter.  Now I think about that and my response is “Oh hell no!”  I am barely keeping my head above water with the three we have and before that I could barely manage the one we had.  But one thing we do have is chaos and lovely laughter.  Oh the laughter.

One day shortly after school started this year I dropped the kids off and as they ran to the school I just honked once and waved.  Daniel waved back smiling.  Sylvia gave me a goofy look.  I didn’t think much about it and did the same thing the next day.  By the third day Daniel said “Honk at us!” as he got out of the car.  Sylvia said “No don’t!”  Then she took off running for the playground.  Which was weird.  Sylvia hates running.  Last year she walked in the timed run she was supposed to do for P.E.  So I quickly realized she hated the honking.  Which made me laugh.  So I didn’t honk.  But the next day she was going on and on about the honking and how she hated it and I just couldn’t resist.  So I honked again.  (Disclaimer: I am incredibly ornery.  My maiden name is Rutledge which I am pretty sure means “ornery one” in some foreign language.)  The next day I told her I wouldn’t honk.  And I didn’t.  Instead I rolled my window down and at the top of my voice yelled “Bye Sylvia!  Have a great day at school!”  She stopped, turned and looked at me with a horrified look on her face and yelled “NOOOOOO!!!”  As I drove away I had tears in my eyes, from laughing so hard.  The next day as I dropped them off I asked “Honk or yell?”  Sylvia, totally defeated, said in her most annoyed voice “honk”.  Ah the joy of raising children.  So much laughter, on my part anyway.  I have decided to only torture Sylvia a couple of days a week now by honking.  Which she is grateful for.  Daniel, on the other hand, loves the honking.  He’ll stand there with a giant smile on his face waving as I drive by.  I just can’t resist that smile.

A few weekends ago it was a rainy Fall day here in Spokane so I decided to surprise the kids and take them to a local McDonald’s that had just renovated their indoor playground.  I figured they could burn off some energy and I wouldn’t have to make lunch, a win-win for everyone.  Once we get there I decide to splurge and let them get Happy Meals.  We don’t go to McDonald’s very often and when we do we rarely get the Happy Meals.  So they were pretty excited all around.  I took the kids into the playground area and got them set up at a table.  Then I headed back to wait for the food.  There is a glass wall between us so I could see them.  As I was standing there waiting for the food I looked over to check on them.  I could hardly believe what I was seeing.  Daniel and Sylvia were hugging each other with big smiles on their faces!  Now this might not seem relevant to you but in the 6 months we have had them, they have never hugged, NEVER.  They hug us, but not each other.  Once they got in a fight and I told them to apologize and give each other a hug.  They refused!  They patted each other on the arm and walked away.  So to see them hugging was like Congress agreeing on something.  I started laughing because I just couldn’t believe my eyes.  When I got back to the table with the food I asked “Why were you guys hugging?”  They looked at each other and Sylvia said “Because we are so happy!”  Lunch at McDonald’s - $20.  Seeing that hug – Priceless.

For the last few weeks Jackson has been desperately trying to move.  His current mode of transportation is just to roll everywhere.  But lately he has been getting into the crawling position.  He has been standing up on his knees, then when he starts to fall he falls forward onto his hands.  This is fairly amazing in itself because for so many years he never used that left arm/hand.  Since the damage to Jackson’s brain is on the right side his left side has always been weaker and non-functioning.  So to see him responsively put his arm out and bear weight on his hand is an amazing sight.  The other day we were on the floor and Jackson got in the crawling position.  I got in front of him a few feet and said “Come see Mommy.”  Before I knew it he scooted his right leg forward, moved his hands forward and had moved a foot or so!  I started crying.  I kept coaching him on to get closer and boy did he try.  He was huffing and puffing like he just ran a mile.  He was trying so hard but he just couldn’t figure out how to move that left leg.  He finally collapsed to the floor, exhausted.  It was amazing!  So amazing!  As I write this I am crying just thinking about it.  I try not to think about Jackson doing certain things because then if he isn’t able to do something then I won’t be crushed.  When he does do something then it is a miraculous, joyous occasion.  I never thought Jackson would crawl.  Once again I think that kid is going to prove me wrong.  Ever since having Jackson, I really love being wrong.

I leave with this quote, it seems fitting to my children right now.  “All children, whatever the impairment, are propelled by the need to make themselves whole.  They may not get there, and they may need massive guidance, but they must forever try.”  - Oliver Sacks

 

Struggling

It would appear that Jackson’s seizures are making a comeback.  And with it brings this constant worry, this ache in my stomach, this scary feeling that something awful will happen to him, that he will regress and lose all the progress he has made, that he will go back to being miserable from the constant seizing, but most of all that I will lose him.  I know it is an irrational fear.  I know I have no control over what happens, but I just can’t stop worrying. 

My husband said to me that I just got too comfortable with Jackson not having seizures.  Damn straight I got comfortable.  It was so easy to watch my kid become a happy, alert boy who was finally making progress.  Not seeing those nasty, unforgiving seizures take over Jackson on a daily basis was elating.  I knew on some level they were still hiding in there.  That one day they would reappear.  The neurologist has always made it clear that Jackson will never really be seizure free.  That because of his brain malformation seizures will plague him throughout his life.  I just wanted to forget them for a while and enjoy watching him being a happy little boy.  I needed to feel happy too.  After a couple of years and wondering “Why my kid?” and watching other parents enjoy their “neurotypical” children’s success, I was desperately needing to be happy for a while.  Maybe that is selfish or maybe that is a normal response to this different mothering experience I am having.  Who knows.  Either way I got used to it, was comfortable, and by god I was happy.  And now here we are again.

In July Jackson has 3 seizures so we upped his medication.  He had one in August, one in September (that lasted 10 minutes) and then Jackson had a seizure last week while riding horses.  We immediately got him off the horse.  Laid him down in the back of the car and waited the 7 minutes it lasted.  I of course didn’t have the medication we are supposed to administer if a seizure lasts more than 5 minutes, and we were far outside of town on the ranch.  The medication is now permanently in my purse and travels with us wherever we go.  Jackson fell asleep right afterwards and took over a 3 hour nap that day.  It really wore him out.  But he bounced back to his happy self by that evening.  Then 4 days later he had another one, this time in the bath.  I got him out and laid him down on the floor, his breathing was not good with this one.  He stopped breathing a few times.  His lips even turned blue.  The seizure lasted 5 minutes.  But this time he was having trouble afterwards.  He went right into a high fever, his eyes were glassy and red, and he just wasn’t really responding to me.  After a few minutes I was worried that he was in trouble.  I got all 3 kids in the car and we headed for the ER.  By the time we got there Jackson was just hysterical.  A swarm of nurses and doctors were in the room working on Jackson and thankfully a wonderful woman came and took Daniel and Sylvia to a different room to watch Finding Nemo, color and have some snacks.  (After we were discharged and headed to the car, Sylvia says “That was fun!” and Daniel said “Yeah, really fun!”  I guess I don’t have to worry they were too scarred from that ER visit.)  They gave Jackson some medication to calm him down and then he was able to rest a bit.  His vitals were good and nothing appeared out of the ordinary.  But once that medicine wore off he went back to being hysterical.  After going over some options we decided to just take him home.  He still had a fever but it was fairly low.  Once we got home he finally calmed down and went right to bed.  He didn’t sleep well that night though and I kept giving him ibuprofen and Tylenol to get rid of that fever.  He stayed home from school for the next two days to fight the fever and rest.  He’s back to his regular schedule and to being a happy 5 year old.  He rode horses yesterday and did fine.  The neurologist upped his medication again so we will see how that goes. 

Yesterday I dug out all my epilepsy books and started researching these new types of seizures he is having, tonic-clonic.  Here I go again.  I always try to remind myself that I am a much better mom when I am not sad and feeling sorry for my baby.  I do much better when I am vigilant and a bit pissed off.  My mind is clearer and I can focus well that way.  It’s time to go to the angry mom phase and get some work done.  Which reminds me of a lively little quote by J. Rumi: 

You must become ignorant of all you've been taught

And be, instead, bewildered!

Run from what's comfortable and profitable.

Run, run, run!

If you drink those sweet liquers you'll spill

The springwater of your real life.

Forget safety

Live where you fear to live.

Be notorious

Destroy your reputation.

You have tried prudent planning for long enough.

From now on, live mad.

Damn Mysteries

The other day Daniel asked me if had been a year since he and Sylvia came to live with us.  I laughed and said “No but it feels that way some days!”  He laughed and said “Yup it seems like forever!”  I had to do the math to realize they have been with us for a short 5 ½ months.  And what a 5 ½ months it has been.  Being a parent is hard.  Being a parent of foster children is kind of surreal.  I’ve read 9 gigantic files on the kids and know their history according to the State of Washington.  But there is so much I don’t know.  Since they are young, they don’t remember a lot and can’t tell me what I want to know.  Typical to my life as a mom, I have two more children who are a mystery to me.

The stories I know of the kids are stories that I don’t think they need to know, yet.  Someday we will tell them their history, but for now they don’t need to know the details.  They need to be kids and have a childhood filled with good memories, not the ones they were so unfairly given.  The truth is, it’s hard.  Whenever I tell them a story of Jackson as a baby they want to hear more.  I know they were wishing I had stories of them.  So do I.  I wish I knew what they were like as babies.  I so wish I had a baby story to tell them.  The first few years of their life may never fully be told.  That’s hard for me to grasp, I can’t imagine what they must think about it. 

All we can do is go forward.  What I have found the last few months is that is easier said than done.  Becoming a mom to 2 children ages 7 and 9 is kind of like marrying someone after only knowing them for a couple of months.  They are so wonderful.  Then you get married and realize they don’t put the cap on the toothpaste, have terrible aim at the toilet, leave their dirty underwear on the floor and their dishes in the sink.  Reality sets in.  You begin to wonder what the hell you were thinking.  But you made this commitment and you aren’t backing out of it.  There are tough days.  Days when you go to bed thinking you have failed repeatedly throughout the day.  Days when you wish you could take back about 1000 things you did or said.  Then there are awesome days.  Days when you realize you are making a difference in their lives.  Days when you realize you are giving them a life they could never imagine would happen.  Days when you built memories you know they won’t forget.  Highs and lows.  What I try to remember though is that we are still in our honeymoon period and that we are all learning as we go.  We will get to our cohesive place someday.  In the meantime I keep in mind the advice of Nelson Mandela who said “What counts in life is not the mere fact that we have lived.  It is what difference we have made to the lives of others that will determine the significance of the life we lead.”  Well said President Mandela.

Summer Endings

This week school started here in the Pacific Northwest.  If you listened hard enough you could hear a collective sigh from the parents throughout the city.  I think mine was loud enough to power the city for 3 minutes.  Surprisingly the summer flew by.  I distinctly remember the last day of school and feeling panicked about what the heck I was going to do with 3 kids all summer long.  Then I spent the last two weeks of summer break trying to fit in all the things I wanted to do over the summer that we never had time for.  I suppose I am like all the other crazy haired moms surviving summer.  Survive I did though and I am expecting my survival badge to arrive in the mail any day now.

For the kids’ part they had a fun filled summer – Florida, swimming, boating, amusement parks, camping, riding bikes, lazy days at home playing, and summer camps.  For this Mama’s part it was the best of times, it was the worst of times.  It was fun to experience a different kind of summer.  One thing I discovered is that I underestimate Jackson and his ability to have fun.  I decided this summer that I was going to take Jackson on as many adventures as I could with the kids.  I want him to have all the experiences that other children have.  There is a part of me that always thinks “Oh he won’t like doing that.”  In typical form that kid proved me wrong quite a few times this summer.  I think the most amazing thing he did this summer was sit through an Imax movie.  As part of the package to ride the amusement park rides downtown in Riverfront Park you get to go to an Imax movie.  I didn’t want Daniel and Sylvia to not get to go because of Jackson so I stocked my purse with Hot Tamales (Jackson’s favorite candy) and came up with a backup plan if Jackson didn’t make it through the movie (which was about sharks!).  I was nervous and anxious.  Once the movie started Jackson looked up at the screen and had this “What the…?” look on his face.  He was moving his head around looking at different parts of the giant screen trying to figure out what was happening.  5 minutes went by.  I couldn’t take my eyes of Jackson.  He was really engaged.  Then 10 minutes went by.  15.  20. And then he started making noise.  I whipped out the Hot Tamales and he was happy and engaged again.  The movie was only about 35 minutes long but when it ended I had to use all my energy not to cry.  Jackson made it through an Imax!  It was unbelievable.  Going to an Imax movie with Jackson wasn’t something I thought we would ever do.  But we did and it was awesome!

Having kids home for the summer is a lot of work.  Those of you who do it know what I am talking about.  Between the appointments, errands and simple every day stuff there isn’t a lot of time for moms to relax and take a few moments to herself.  There were days when I was so tired I didn’t have the energy to brush my teeth.  My motivation to keep going was a 4 day trip to Whidbey Island with my best friend Tami.  Boy did I need that vacation!  Just taking care of myself, eating good seafood, sleeping without a baby monitor next to my head, and the calming sounds of the ocean.  The trip was great but the best part was upon my return hearing my husband (who spent 4 days with the kids by himself) say “You work your ass off.  I never had any time to myself.”  I know he appreciates what I do every day and understands it is hard work, but hearing those words and having him acknowledge it, well it made my whole summer! 

As we head into the school year remember that “There is no end to education.  It is not that you read a book, pass an examination, and finish with education.  The whole of life, from the moment you are born to the moment you die, is a process of learning.” – Jiddu Krishnamurti

 

 

 

 

 

Words out of My Mouth

This isn't my post, but this Special Mama took the words right out of my mouth.  Wanted to share with you all.  Take a moment to read.

http://www.huffingtonpost.com/suzanne-perryman-/to-the-author-of-the-anonymous-note-left-on-my-car-window_b_3806012.html?utm_hp_ref=mostpopular

Stages

When you are a special needs parent you go through a lot of stages, at least I have.  Some are bad, some are good, and none of them show any signs of leaving.  One of the worst ones is when you start walking down the road of “Why my child?”  That’s a dangerous one and hard to find a way to turn around.  I could write forever about that hideous stage, but I’m not in the mood right now.  Then there is the stage of simply forgetting your child has special needs, that there is anything different about your family and you just live your life, enjoying your child and all the joy he, or she, brings you.  That’s the really good stage.  Unfortunately, something always happens to snap you out of that stage and brings you back to the reality of the situation.  This week has done that for me.  But I’m finding out that maybe being snapped back to reality isn’t all that bad. 

This week Jackson attended his very first summer day camp.  It is a special camp for children with special needs.  I was so excited for him to have this opportunity.  I know a lot of kids with special needs don’t get to go to camp.  What I really want most for Jackson is to simply have the same opportunities that other kids have.  That includes going off to camp in the summer.  I planned to stay with him all week simply because I didn't know anyone running the camp and to make sure that all his needs were met.  So off we went to camp!  When we got there I was instantly struck with how many kids were there, about 30.  I was also struck with the various severities of disabilities in the crowd.  Jackson was the youngest, most of them were teenagers.  As we stood there getting ready for the pool I was watching all the kids.  And it hit me.  This is my future.  Jackson could be any one of these kids.  Maybe he is the boy sitting in the grass rocking back and forth.  Maybe he is the girl who came up and smelled my hands.  Perhaps he is the boy flapping is his arms as the train goes by.  Or the teenage girl whose speech isn’t understandable.  The truth is, it made me kind of sad.  That first day was hard on me.  I was so excited for Jackson to go to camp, but it made me think of his future and what his future might look like.  I try not to think much about his future.  Maybe that is why it was hard for me.  With Jackson I just kind of need to live day to day.  I don’t know what that kid is going to do every day let alone 5 years from now.  Yet there I was faced with his possible future.  I didn’t really want to go back that second day but the camp wasn’t about me, it was about Jackson. 

The second day was much like the first but a little easier for me.  By the third day I found that I was really starting to enjoy the kids.  I kept noticing an underlying theme with all of them.  Loving.  They were all so loving.  Because Jackson was the youngest they all thought he was a baby.  He was quite popular, especially with the girls.  Every morning they would greet him with a “Good morning Jackson!”, they would rub his head, give him a kiss on the cheek, hold his hand, fight over who got to push his wheelchair, and they would sit in the shallow end of the pool and play with him.  It was so touching to watch.  I could see Jackson light up with a few of them and I knew he had some new friends.   By the time the week was over I was sad to leave the kids and sad for Jackson that his camp was over. 

This week made me realize how lucky Jackson’s fellow campers are.  Their disabilities may make them stand out from the norm and to some that may be a bad/weird/uncomfortable thing.  But I think they actually have an advantage over people without disabilities.  They see the world differently.  To them the world is about love and caring for each other.  Not about making fun of others, hurting people’s feelings, being a bully or acting better than anyone else.  Things many neurotypical children do.  In that regard, I want Jackson to grow up to be like his fellow campers, not a neurotypical child.  I want his friends to love and care about him, not make fun of him or make him feel he isn’t worthy.  I want my son to be someone who sees the good in all people and not focus on differences that set others apart.  After all, as Benjamin Disraeli said “We are all born for love…It is the principle of existence, and its only end."

Back to the Star

My last few blog posts have been mostly about the two new little grasshoppers who have entered our life.  I think it is about time I spend a little time writing about the star of the blog – Jackson!  With the addition of a brother and sister, his life has been turned upside down and around.  Factor in the daily happenings in his own little world and it adds up to quite a lot of busyness, for him and for me. 

Adding two kids into our home has made it difficult to focus on Jackson and give him the attention he once had.  I miss it.  I’m very conscious of the fact that siblings of children who have special needs often get overlooked and don’t get all the attention they need.  I don’t want that to happen.  To make it not happen I have to make sure that my attention is equally distributed.  Impossible.  No matter what, Jackson requires more care and attention.  This balancing act is proving to be more challenging than I imagined.  I have found that the attention I give Jackson is more focused and centered.  With my limited time I have to make sure every second counts with him.  There is a part of me that feels guilty though.  I know having siblings will be the best thing for Jackson.  He seems to enjoy having the other two kids around.  He smiles at them as they walk by or when they stop and talk to him so I know he likes them.  But part of me worries what he might be feeling.  I wonder if he feels like I have abandoned him a little.  If he misses the attention, if he is jealous, if he is mad at me.  It makes me sad to think about that and I hope he understands.  A mother with guilt is what I am.  So basically I am a regular mother.

Jackson has had a few seizures recently.  The seizures he is having now are different than the ones from before.  For starters, they last a long time.  One was approximately 7 minutes long.  He is exhausted after them and typically pretty cranky.  They are hard on him and take a lot out of him.  It’s difficult to watch.  We’ve increased his medication again so hopefully that will help.  Every time he has one I find myself going down a deep hole.  I hate the seizures so much.  Watching him have one sucks me dry.  Afterwards I can’t focus, I often cry, I go down that “Why Jackson?” road, and I want to scream and throw things.  We’ve been so lucky the last year or so having him seizure free.  He’s made so much progress and is finally a happy little boy who interacts with us.  I live in fear that the seizures will return and we will lose Jackson again.  That all this progress he has made will be lost in the flurry of electrical activity of his brain.  It’s not a good feeling to live like that.

Being a parent of a child with special needs is a wonderful, emotional journey.  It has taken me a long time to focus on the good things and not the bad.  The other day a song came on the radio that reminded me of the journey.  2 years ago I put up a post called Hello World, based on the Lady Antebellum song.  It was during a difficult time that I wrote that post.  When I heard it the other day I started reflecting on how far I’ve come as a Mom.  How I’ve come to accept Jackson for all he is.  How he’s motivated me to be a better person and help others.  Then he started having seizures again and it threw me back to those difficult times.  I could feel myself turning down that dark road.  It takes a lot of energy to try and pull myself out of the car and not drive down that road.  But I have to.  I know that there are always going to be challenges in my life with Jackson.  There are challenges with every child.  How I handle and respond to those challenges is what shapes me.  I can go down the dark road or I can stay on the road we are on.  I want to stay on the road we are on, I just wish there were a few more palm trees on it.

And speaking of palm trees….we are home from our 2 week vacation in Florida.  Jackson loves Florida.  He loves the pool, he loves the beach, and most of all he loves his family.  His teenage cousins dote all over him.  They only get to see him once a year so they focus their time and attention on him and Jackson loves it.  Not to mention the aunts and uncles coming and going and the Grandma and Grandpa who think he is the best thing in the world.  He is not without love in Florida that is for sure.  Despite the bouts of diarrhea (and the dreaded BRAT diet) he had in Florida, he managed to have a great time and was happy as can be.  That kid doesn’t let a little poop stop him from having fun. 

This time I leave you with a quote that seems fitting to remind all of us to stay on the right road.  “We either make ourselves miserable, or we make ourselves strong.  The amount of work is the same.” ~ Carlos Castaneda

New Adventures

The Klim family has had an armload of adventures this past month.  There were the chaotic last days of school during which I found it important to volunteer for field trips and field day.  I have no idea why.  Nor do I know why schools pack in all that stuff at the end.  Don’t they know Mom’s want to spend the last few days of school napping to rest up for the summer ahead?  These days were then followed by the end of the school.  Such happy children, such distressed moms.  Ultimately that all lead to three children at home all day long, an adventure I think is fairly unnecessary.  I would just like to put in a supportive plug here for all schools to go year round.  Please!

So here we are 3 weeks into summer break and what are we doing?  Vacationing in Florida!  And to get here we flew on a plane, which is something 2 of our children had never done before.  This was a grand adventure that I enjoyed thoroughly.  It entailed tears and laughter on my end.  We had to get up at 4 a.m. to get ready and I can honestly say I don’t think I’ve ever seen the kids move so fast – eat breakfast, put on clothes, brush teeth, comb hair, get shoes on, get backpacks – this all happened in nearly a blink of the eye.  Their excitement was overflowing.  Everything was so new to them and they just took it all in with wide eyes and wonderment.  The best part was taking off in that plane.  I couldn’t count how many “Whoa!” I heard.  Or “Look at that!”  It was so much fun.  Watching their little faces made me tear up.  To be a part of that is something I will never forget.  We of course had to take off and land 2 more times so it was quite the exciting day.  Jackson was a traveling champ as usual.  The kid is an old hand at traveling on the plane.  My only regret is that I didn’t get him a frequent flyer number when he was born.  Ten trips to Florida, one trip to Connecticut, and at least 5 trips to Denver could have added up to some good flyer points! 

Last month the kids took swimming lessons in preparation for our trip to Florida.  My husband’s parents have a swimming pool and I wanted them to have some experience in the pool before we came here.  When we arrived at Grandma and Grandpa’s, at 10:30 at night, the requests to get in the pool began.  A week later they are still going strong.  They are barely awake and out of bed when they ask “Can we get in the pool?”  Whenever the answer is no they get the most deflated look ever on their face.  You would think I just took Christmas away.  The great thing is that they are getting so confident in the water and learning to love being in the water.  They both failed their swimming class because they weren’t confident.  Progress is being made!   Jackson on the other hand loves the pool so much and is a giggling mess whenever he gets in.  He loves the water and he especially loves being around all the other kids in the pool.  Lots of splashing, moving around and laughter is what you experience when you walk outside here in Vero Beach, Florida! 

The next big adventure was watching the kids see the ocean for the first time.  Another tearful moment for this mama.  Their screams and laughter said it all.  They love the ocean, sand and “treasures” (i.e. seashells).  Endless fun abounds when we head to the beach.  The beach and ocean just happen to be Jackson’s favorite place on earth so there are no complaints from him when we are there, only pure utter joy and the salty taste of the grand old ocean.   

Most people who come to Florida come for one main attraction, Disney World.  That was my destination on my first visit to Florida.  I thought it would be awesome to surprise the kids and take them there one day.  Sadly, Disney must feel their 2013 first quarter profit of $383 million is not enough so they have outrageous ticket prices.  Ultimately making it unaffordable for regular folk like us.  Just to get into the park would have cost us $454!  That’s a bit much for one day of entertainment.  Shame on you Disney!  It definitely is not the happiest place on earth.  Instead we surprised the kids by taking them to Lion Country Safari, an outdoor drive through safari in West Palm Beach.  The kids loved it!  Who doesn’t love seeing monkeys, giraffes, lions, zebras, hippos, camels and African deer.  Since Sylvia loves animals she was in heaven.  It was a great day and another first – exotic animals.     

Oliver Wendell Holmes said “One's mind, once stretched by a new idea, never regains its original dimensions.”  My kids have had their world opened up to them on this trip.  I don’t think their minds will ever regain its original dimensions and I think that is awesome!

Summer Plans

It’s that time of year again, the end of the school year.  Anticipation is high in our house right now.  The counting down of the school days, the declaring of how they plan to spend their summer and the joy of being able to wear shorts.  It is the best of times (for the kids) and the worst of times (for the mom).  I have always dreaded this time of year because Jackson hates summers so much.  That kid loves school and not being able to go to school has historically made our summers fairly miserable.  I think this summer is going to be better though (fingers crossed).  Having Daniel and Sylvia around will hopefully keep Jackson occupied and happy.  Of course our two week trip to Florida and the beach (Jackson’s favorite place) also helps.  But planning a summer with three kids has been, how shall I say, thorny, complex, intricate. 

Having a special needs kid who has a lot of therapies and doctor appointments is difficult to manage sometimes.  Now add in two other kids who have counseling, behavior therapy, summer camps, day care and doctor appointments and all of the sudden the summer turns into a logistical nightmare.  I have spent every day of the last week staring at the calendar trying to figure out how to get it all to work.  After 5 days and numerous post it notes I think I may have figured it out, somewhat.  So much for a laid back, hanging out kind of summer. 

The kids have never done summer camps before and they are so excited.  I let them each pick two camps and them being able to decide on their own was a big deal for them.  It is something they get to have some control over which I know means a lot to them.  This summer Jackson is going to his first ever summer camp.  Spokane has an amazing Parks and Recreation department that has an even more amazing therapeutic recreation program for people with disabilities.  Every summer they have a Funshine Day Camp that will accommodate children with special needs.  I am so thankful and excited that Jackson is going to get to do something like that.  It’s going to be a great experience for him.  Sylvia and Daniel both picked Camo Camp.  A week of building forts, tying knots, and archery.  Then Sylvia picked a Science camp and Daniel picked Mini Hawk Camp (baseball, soccer and basketball).  Should be a fun summer for everyone.

I may be spending the summer in my car driving children around but it will be a summer I know they won’t forget and that makes it worth it.  Besides “Children think not of what is past, nor what is to come, but enjoy the present time, which few of us do.”
-Jean de La Bruyère

Acceptance

When we began spending time with Sylvia and Daniel I was concerned about how they would react to Jackson.  I just didn’t think I could bring new children into our home who didn’t adore Jackson and see him for who he really is, instead of his diagnosis.  The truth is this really weighed heavily on me.  I’ve always wanted Jackson to have siblings.  I wanted him to have kids around to play with and learn from, kids who would help him and stick up for him when needed, a buddy he can have memories with.  But the kids didn’t initially warm up to him, and that worried me.  They would just kind of look at him with the “what is wrong with him” face.  They would ask questions about him but didn’t seem too interested in hanging out with him or interacting with him.  I knew it would take time for them to warm up to Jackson but it wasn’t going as I had hoped.  Then the kids moved in and they were still pretty slow to warm up.  Then something wonderful happened. 

Right after we started visiting the kids I signed up to do a Guild School school presentation at their elementary school.  I thought it would be fun for them to see Jackson and I up in front of their whole school talking about him.  Jackson went to the Guild School from the time we got his diagnosis until he was 3.  The Guild School is an amazing place and has helped so many local kids who have special needs.  Every year they have a Penny Drive and we go to local elementary schools and talk about how the Guild School helped Jackson when he was a baby, through physical, occupational, and speech therapy.  The students then bring in change to put in milk jugs to raise money for the Guild School.  It brings in a lot of money for the Guild School every year and ensures that no child is turned away if their parents are unable to pay for the therapies they need.  I love doing these presentations and talking about Jackson and Jackson loves them too.  He loves the sound of clapping and we get a lot of clapping so he is a happy presenter. 

So there Jackson and I were waiting up front while all the students filed into the gymnasium.  Sylvia came in with her class and ran over to say hi to us.  Then Daniel came in and did the same thing.  I asked them if they wanted to stand by us while we talked.  They both did.  The presentation started and the Guild School representative introduced us.  I then introduced Daniel and Sylvia as Jackson’s brother and sister.  Then I did my little talk.  The whole time Daniel and Sylvia stood next to Jackson and each side of his wheelchair.   They were patting him on the head and rubbing his arms, and holding on the wheelchair in case he tried to roll away.  After the presentation Sylvia’s class stayed and Jackson and I went over to talk to them.  They had lots of questions about Jackson and I let Sylvia answer some of them.  She told them about his special bed and how he likes to kick the sides, which is noisy!  She told them he rides horses (super cool in the eyes of all those kids), has swimming therapy (more cool), and has swings in the basement (way cool).  The kids in her class really loved Jackson and I could see Sylvia realizing how it was pretty awesome to have Jackson as a brother.  When I picked them up from school that afternoon they both thought standing up in front of their whole school with Jackson was the best thing ever.  The loved it!  Then Sylvia said some kid had come up to her after school and said “Jackson is really cool.”  And from that day forward Jackson was no longer a weird mystery to them.  He was just their little brother.  They bring him toys, they play with him, Sylvia has even brushed his teeth and helped give him a bath.  Daniel likes to tell me what Jackson is thinking.  Sylvia even said to me the other day “How could anyone not like Jackson?”  Daniel likes to pet Jackson’s hair, he thinks it is the softest thing ever.  He’ll just sit there next to Jackson talking to him and petting him.  Jackson has loved the extra attention and lights up when the kids are around.  I still think we have a ways to go with them truly interacting and spending time with him, but they are getting there and it has been amazing to watch their story unfold.  As William Shakespeare said “To climb steep hills requires slow pace at first.”