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