Eight.

This morning we headed to Hasselt for a soccer tournament. It was a long day watching games, but something I always enjoy. It was the last soccer I will share with my seven-year-old. Tomorrow, August 30, he turns eight. Eight already. Where does the time go?

I watched my lil bug tear around the field, doing his darndest to keep a win in sight. Playing as a stand-in for another team is hard work. What is their offence? How do they play defence? Where do I fit into the team? He did a good job, playing with a team a step or two below the level of his own. He scored, he passed, he stopped balls from becoming goals. He managed to run the entire field trying to keep the team in the lead. And in the three games they played, the team won two of the three. Quite an achievement at the Coca-Cola Cup.

Throughout the years Jari has been a part of my life, soccer has been a part of more than half. He thrives being on the field, shooting penalties at home, joining kids during play while on vacation. He never complains about having to go to practice, instead asking when he gets to go again. His favorite clothing is covered with soccer clubs or soccer balls, his shoes always a pair that can easiest kick a ball. His bedroom is a shrine to his collection of medals and trophies housed in decorations from his beloved Ajax. You will never see him leave the house to go to school without a ball at his feet, and his pump (or the 5 we have purchased since his arrival) is one of his best friends. He waits for games to be broadcast on tv, asks for scores when he awakens in the morning, and can name the majority of the big players, their home country, and for which team they play. He can also name all of the flags of those countries. And, lately, he can tell you how much they make playing his favorite game in the world.

With this newest information, Jari frequently tells us what his plans are for all the money he'll be making one day when he hits the big time. His villa and his cars, the house he'll buy mama and papa so we can watch his games. He has big plans, that little boy of mine.

My little bug, at nearly eight, your dreams are big. Tomorrow, when the sun brightens the earth, you will awaken and be part of this great big world as an eight-year-old. Your dreams, tomorrow, will still be bigger than you, but knowing how stubborn you are, how much you love the game, and how much talent you already show, these dreams have every possibility of becoming a reality. Stay with your dreams, my little boy. Make them as big as you dare, and work hard to bring them to life. If your dreams remain in soccer, mama will be there to cheer you on. If they take another turn in life, mama will be there to cheer you on. Your dream is my dream, my sparkly little son. I love being here to share it all with you, watching you grow, mature, evolve as a little tot into the eight year old I know today.

Thank you for giving mama a reason to stand in the crowd and cheer, my voice loud and excited, calling your name from the sidelines as I see you look my way and smile at the big thumbs up I send your way. I will always be by your side, guiding you to be your very best. Today, winning the games at the Coca-Cola Cup was just one little trickle of who I know you will become. Eight years old. Happy Birthday from your very biggest fan!

just things

just got home from my sis-in-laws house where she and her boyfriend hosted a yummy, gezellig bbq. it was a beautiful day, cooling off in the evening. the three of us started our afternoon by heading to a farm where we wandered through the fairy tale land in a giant cornstalk labyrinth. jari was thrilled with the adventure, made even better by the kitten who followed us from step one til the end through the labyrinth. we solved the puzzle with all the letters we found on donald duck, cinderella, mickey mouse, puss in boots, robinhood, etc. the answer was: fairy tales on the farm. think we have a chance of being prize winners? i think maybe we already were as jari sprinted from one path to another singing in delight with each letter he found. the calves and baby bunnies were just icing on the cake.

oh yeah, speaking of cake. my birthday was july 23. we were on vacation, and upon our arrival home i decided not to host a party with the event of my accident. tonight, as the grill was sizzling the last of the meats, out comes a cake lighting up the night with candles as everyone sang happy birthday to me. i was in shock, and it was a true surprise which made me feel special and loved. i got some wonderful gifts, many birthday wishes, and a couple poems which brought tears to my eyes. nothing is better than the words people share expressing their feelings for you. words which tell you how important you are, that you have people surrounding you whom you can always count on, who love you no matter what. these words i will always treasure, knowing that though i am not flesh and blood to erwin's parents, my presence in their family has been a blessing none-the-less. and that feeling is very mutually reciprocated. i treasure my in-laws (sis included) more and more with every day that passes. this little birthday celebration is just one of many ways they show me time and again how much i mean to them. thank you ilse and michel for the terrific evening. thank you omam and opap for loving me.

and that brings me back home again. home, where my little sweetheart who does up my bra for me every morning sleeps soundly in his bed. where my husband quietly sits looking for information for our last family day out during this summer vacation 2009...to legoland in germany in the morning...always giving me new adventures to cherish, as he cuts my toenails, cuts my meat, and folds my clothes, telling me my hand isn't deformed even as i stare at the deformity knowing what i see, reassuring me, loving me, no matter what. and awaiting the arrival of my riley boy in just 4 short days from today, the one whom i miss beyond missing, yet cherish these days apart knowing i have built up enough strength to again go on, while he has given his grandparents the comfort of his hugs, his smile, his mischievous ways.

i am the richest woman in the world.

handicapped

i think i have it slightly figured out. how it feels to be handicapped. it is different than being told: you have autism. but it is a blow and one i'm having much difficulty with emotionally. i was told that my chances of ever getting use of my hand again is extremely minimal. that though i may see some improvement, have use of some parts, i should not expect to have a functional left hand.

it hit hard, right to the core center. a creative someone, how can i be crafty? a mother, how can i create a proper meal for my children? a wife, how can i iron his work shirts? me, a piece of me deformed, a piece of me taken away, yet another disaster to manage in my life with one less limb to use to do it.

it seems unfair. i keep comparing it to autism in my mind, how i felt when i was told kaeden was autistic. and then how he must have felt when he learned it about himself. how do you deal with being told your life is not what you hope it will be? that a piece of you won't work like you should? to come to terms with a different life than the one we envision?

i feel as if i have been delivered enough blows in my life. i can't quite fathom what i have done to deserve it all. i try to stay positive, but these thoughts continue to niggle at the back of my mind. why am i being punished? why is my son?

is autism a punishment? no! but it is a life sentenced to being different, and it often feels like a punishment. it feels like a waiting game that never ends. to me, as his mom. to him, well, since feelings are so difficult, i don't really know how he feels, other than those moments late at night when his body is wrapped tightly in his blankets and his head pokes out and in his calm he asks me: mama, why do i have autism? and when i try to answer honestly, it feels like a punishment to both of us, all of us.

i know that i should be grateful that i am alive. yes, i do know this. that somehow, life was nearly taken from me and for whatever reason i was spared and given the chance to live. but in return, i get to be handicapped. just a little one, just a useless hand, just some pain and new ways of doing what used to seem so simple. but it still feels like a punishment to me.

i think i finally understand my son a bit better. how he must feel being different as i see all the stares as people look at me walking encased in a sling and brace, their curiosity getting the best of them. if this is what it takes to be a better mother to my son, i'll live with it. if it makes me more understanding, so be it.

but dang, it feels like a punishment to my battered soul.

annonymous autism comments

Anonymous said...
You're supposed to be an adult... GROW UP!
April 10, 2009 8:03 AM
Anonymous said...
Where is Adolf Hitler now, that we need him most?
July 23, 2009 12:52 AM
Anonymous said...
All these hideous creatures should be euthanased to spare the families the horror of their existence.
July 23, 2009 12:54 AM

Here are some replies i recently received to one of my posts about autism. at first, i wasn't letting it bother me. some people have no idea what autism entails, how can i judge them for not understanding, i thought. but the more i considered what anonymous said, the more i realized i needed to address this. because, though they may not have experience or understanding about autism, these comments are downright horrific. anonymous feels it necessary to re-enact the hitler era and in place of killing off thousands of innocent jewish people, we'll now kill off all the autistic individuals...and then what, society will be perfect?

hideous creatures? my son is one of the most beautiful people i know...both inside and out. sure, sometimes his issues are overpowering and throw me for a spin, and then i use my blog as a place to allow myself freedom to express my turmoil, my anger, my frustration. it is, after all, my blog. my place to say whatever i want to say. but the hideous creature of who you speak is the same creature who would accept you for who you are, regardless of the fact you wish him to be annhilated, anonymous. he would give you a smile, take your hand and be your friend, when there was noone left who wanted to be your friend. he would be the one left standing to take your side and believe you were a good person regardless. and most likely, he would be correct. because it is obvious in your strong opinions that you know nothing of these hideous creatures you wish hitler was here to take out.

hitler failed, though he did much damage. you are failing and doing damage to noone but yourself with such comments. you are losing out on an opportunity to be gracious, loving, caring, and understanding. you are doing a disservice to, not only these so-called hideous creatures, but also to society. if you could learn to accept people for who they are, regardless, as my son has so simply taught me, the world would be a place without so much anger, so much pessimism. it would be a place we would all be welcome with open arms.

do i need to grow up, be an adult? well, i think i have managed those tasks. being chosen to be the mother of an autistic child has forced me to be grown up much sooner than i would have liked. there are so many facets to autism, and one of those in my child is his aggressive outbursts. in writing about my experiences, i am able to come to new conclusions, see places i have made mistakes, get ideas from more people. i don't need to grow up and be an adult, i need support and release and understanding, just as much as my son does. it is not easy living with autism, as someone with autism, nor as a family member. our lives are much more involved than anyone can imagine. and if because i need a place to come to terms with all of that, on my own blog, makes me less than adult, well, i've been called much worse names in my life. i'll manage.

these comments just again reinforce the need for greater understanding. these people are not monsters. they are brothers and sisters, sons and daughters, friends and classmates, grandchildren and cousins. they are members of your community...members who have as much right as you to cross the street or stand in line for an ice cream cone. and most likely, they will be the ones who are standing there, not judging you in the least, while the person behind you looks at your wrinkly shirt or scuffed shoes or messy hair. think about that. and then, continue on your way pretending to be a mini-hitler, and fail, just as remarkably as he did, death staring you in the face when you can no longer look at your own reflection in the mirror, knowing you couldn't achieve what you had hoped to achieve, that in the end, it is you, not them, who are the failure...as they take another step forth in the wake of your death.

flight change

thursday we were in ready mode. kaeden was heading to the airport for his arrival home on friday. i was so happy i'd have my little boy back with me, though i was a bit leary about how i was going to manage it all with just one arm and a lot of pain and tiredness. still, after not having seen my son for a month, i was more than ready for one of his tight squeezes...especially after realizing how quickly life changes and how very grateful i am to be here to receive another hug.

the phone rang. it was my parents. "tera, what would you say if we just kept kaeden another month?" they nonchalantly asked. it threw me for a grinding loop. it was so unexpected and i was completely baffled. "well, he has a bunch of appointments in the comin weeks," i answered. "and you don't have enough meds for him for another month. and i don't think we can change his ticket. and..." and, i wanted to say, i miss my son. i want him back home. but i didn't get the real reason for my hesitation out before:

"tera, we think it would be easier for you to heal if he stays with us. he's having a good time, we love having him, and he hasn't been any trouble at all. it's so important for you to not do anything if you want to recover. this would just make it easier." my parents chimed in.

and as i thought about everything that could help me right now, i came to the conclusion that they are right. there can be no fights to break up, no extra laundry to oversee, no extra kaeden messes to clean up. but, it was all so quick and unexpected. they were already half-way to the airport. "can i talk to kaeden a minute?" i asked.

"hi mama." i heard my heart twitter a bit. "hey riley, so, what do you think about staying with gramma and grampa for a little longer?"

"I think I am gonna stay here for you mama. so you can get all better. it will just be so much easier if i stay in america," he answered. his adult-like tone and answer was obvious he'd been eavesdropping on adult conversations. but, it made me feel confident that he was happy with this proposition. "And, " he added "I'm having fun here." that sounds more like my kid, i thought!

so, as i talked to erwin my parents called the airline asking about change fees and ticket surcharges. after i spoke to erwin, i called them back. "Well, if you're sure..." I wavered. "I think it would probably help me out more than anything else you could do." and that's when i heard my mom cancel my son's flight from her cell phone. with a sigh, i told them "thank you."

so, my son is off to play with the deer and antelope in the great wyoming wilderness for just a little longer. he's happy, my parents are happy, and i'm getting used to the idea. seriously, it is a big help. that hug will have even more meaning when i get it another month down the road.