Home Sweet Home

You never appreciate being home until you can’t get there.  That is exactly what happened to us when we made the trek towards home after our Christmas trip to Grandma and Grandpa’s.  Southwest canceled our flight home from Denver because they didn’t have a crew for our flight and then wouldn’t fly us home for 5 days.  After taking matters into our own hands (which apparently you have to do because Southwest is not only unwilling to help their passengers, but are downright nasty about it) we managed to catch a Delta flight home 3 days later.  This of course meant the kids missed school and Kevin missed work.  But there is nothing like walking into your house after being gone for 21 days.  Home sweet home has a new meaning to me! 

As an update to my last post let me say that once Christmas was over the kids’ behavior became much better.  I think the whole unknown of the holidays just had them out of their minds.  As for me, my first Christmas as a mom of 3, and of 2 who believe in Santa and understand the whole Christmas process, I will never be able to express my delight and relief that Christmas is over!  For someone who hates shopping, the last minute gifts, stocking stuffers and taking the kids shopping for each other made me want to jump in the ocean and swim to the Bahamas.  Truly.  I will say that it was fun to create some new traditions for the kids.  Their favorite was snack-a-rama - no real dinner on Christmas eve, just a lot of crackers, cheeses, meats, veggies, fruit and cookies to snack on all night while watching movies and playing games.  It was one of my favorite traditions when my nephews were little and now there are others in my family who love it too!  Somehow we all survived the holidays and have a house full of toys to prove it.

After our visit with Kevin’s parents we headed over to Sarasota, Florida to visit more family.  It was a great chance for the kids to see the Gulf of Mexico and to experience white sandy beaches.  When Daniel first saw the white beach he said “Is that snow?”  He had to go feel it to believe it was actually sand.  We also got to go visit the Big Cat Habitat and Sanctuary that had bears, goats, monkeys, lions, tigers, ligers and birds.  We loved it!  It was fun for the kids to see another part of Florida and to visit Pat, Dave and Sam who we love so much.  And to eat Pat’s to die for homemade mac and cheese!  Before we knew it, it was time to leave our beloved Florida and head to Denver to visit some of my family.  All of whom hadn’t met the kids yet.  We got visits in with my 91 year old Grandma, my best friend Tami and her mom, my aunt and uncle, my cousin and her wonderful little boys who I adore, and my stepbrother.  It was a great trip and I was so happy everyone got to meet the kids. 

It’s fun to watch the kids meet their new family members.  At first they just kind of sit back and take everything in and after a little bit it’s as if they have known them all their lives.  It is also awesome to watch our family members embrace the kids and welcome them into the family.  When you think about it it is really kind of a weird situation.  Just out of the blue getting a couple of kids, raising them and being responsible for their every need and want.  Then introducing them to your loved ones who are virtual strangers to them.  Everyone trying to get to know everyone.  But in the end it’s just the simplicity of family. 

Our 3 week trip was full of adventure.  Our first Christmas together, me forgetting to pack enough seizure medication for Jackson, seeing a new part of America, meeting new family members, lots of rental cars, 86 degree weather in Florida, snow in Denver, and a canceled flight.  Agatha Christie summed up our trip when she said “It is astounding in this world how things don’t turn out at all the way you expect them to.”

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.