14 years

Today was our 14th wedding anniversary. We didn't celebrate it though. We are in a deep, dark valley right now. I don't know if it has ever been this bad before.

Did you know that the divorce rates are higher when a couple has a child with special needs? I don't really believe that it has any effect on the marriage more so than any other part of life, and I don't even know how well supported the findings are. Still, I definitely DO NOT want to contribute to that statistic!

So no congratulations this year. Only prayers. Thank you.

Apple pickin'

• I clearly remember going apple picking in kindergarden. I was so proud because my mom was a chaperone!!! So I was elated when a friend of ours invited us to meet him and his new wife for a day of apple picking. This should definitely become a family tradition. Since last weekend, we have made apple cinnamon oatmeal, baked two pies and eaten plenty of apples.
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• Here is the pie recipe we've been using. It is super kid-friendly, I think, and very little clean up...and delicious! Our next adventure will be pumpkin picking and, you guessed it, pumpkin pie!
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• 1/2 cup apple juice, orange juice or white wine (seriously delicious!)
• 1/2 cup white or brown sugar
• 1/2 cup butter (one stick)
• 6 Golden Delicious apples - peeled, cored and sliced
• 1/2 cup white or brown sugar
• 3-4 tablespoons cornstarch (i doubled the amount and used all-purpose flour as a substitute)
• 2 (9 inch) unbaked pie crusts
• *try adding cinnamon, nutmeg, and vanilla if you'd like!

1. Preheat oven to 350 degrees F (175 degrees C).
2. Combine juice, 1/2 cup sugar and butter in a sauce pan and heat until melted. Add the apples and cook until fruit is tender.
3. Combine the other 1/2 cup of sugar with the cornstarch. Stir into the fruit mixture, then cook until thickened. Cool then pour into the pie shell. Cover with the top crust and seal.
4. Bake at 350 degrees F (175 degrees C) until golden brown.

http://allrecipes.com/Recipe/Apple-Pie-II/Detail.aspx?prop31=1

At Old Navy

Something about hats just makes them dance!

Mirrors too!

Next time we don't have anything to do I'm taking the kids to Old Navy. Wow, they had so much fun! And did you know that they have interactive displays there??? (Well, my kids make everything interactive, even a few preppy dressed manikins and their dog!) Poor Tiago did not join in the fun. He was strapped in the stroller!

CODE YELLOW

Two Perfect Little Angels!

We Can Do No Harm!

The Reality- Double Trouble!

Off topic- This is what Phoenix had gotten out of the fridge and planned to have for breakfast!

I found out what a CODE YELLOW was last week. I took the three boys to Target. I figured we had a large gap of time and I had very few items to purchase so I figured this would be a successful trip despite being outnumbered 3 to 1! Phoenix and Rio were very excited about the seating arrangement of the cart (they could sit next to each other) and Tiago was just as excited about sitting in the basket part! There was one problem, the straps kept coming undone so Phoenix and Rio were got loose! They were actually very well behaved. I was impressed. When they strayed too far from me they came back and had fun playing and laughing amongst the clothes rack. And then suddenly Phoenix was gone!!!!!!!!!!!!!!!

Rio and I thought we heard his "Dah, dah, dah" but we couldn't find him. I found a sales associate and they radioed over the walkie talkies "Code Yellow", which means they lock all the doors (so that no one leaves with your child) and do a sweep of the store aisle-by-aisle. The lock down part helped me not freak out. They didn't find him right away, but eventually he was found 2 feet away from where I had been standing looking at the clearance rack. He was hiding between the boxes of car seats!!!

Even crazier was that as soon as he was found, RIO TOOK OFF! And they had to call out another "Code Yellow". Now I was completely embarrassed of the behavior of my kids. Luckily, we found him almost right away. What was he doing? Hiding. WOW! I'm amazed at how quickly Rio made the connection "I hide. I get attention."

From now on, before we enter the store, two rules are reviewed.

1- Stay close to Mama and/or Papa.

2- No hiding!

Ode to My Babies' Daddy

Ben's list of concerts includes KISS, Iron Maiden and Metallica. But he claims that The Wiggles show beats them all because of the joy it brought to Phoenix!

YESTERDAY I was thinking, Well, I guess I'll only being parenting 2 of my 3 children! Phoenix just adores his dad and most of the time doesn't want anything to do with me! (OK, I'm exaggerating! But the phrase "What am I? Chopped liver?" often goes through my head!) It is so sweet to see the affection Phoenix has for his dad, and vice versa. I am constantly reminded of how distraught Ben was over the Down syndrome diagnosis and how that pain has been turned into something so beautiful. Phoenix was a complete mama's boy until the birth of Rio. Then he had no choice but to go to his dad if he wanted undivided attention! Nowadays, I am ALMOST jealous of their relationship! They have a special bond that few will come close to replicating.

TODAY I felt like I won't be parenting ANY of my 3 children, because I'm a girl and I just can't keep up! I can't compete with how high Dad can throw, how far he can kick, his backflips on the trampoline, his energy level or his goofiness! So I think I spent most of the day doing housework while Ben got to play...and I was thankful.

I am thankful that my boys have such a good dad. None of us are perfect parents, not Ben either, but he does a great job of investing in his boys and balancing playfulness with parenting. His boys will always know that they are loved, made evident by the amount of time Dad spends with the them and all the hugs, kisses...and junk food (LOL! since Mom is always saying NO! LATER!) they receive from him. Because when Ben does screw up as a parent, which we all will do, he'll have built of a foundation of love on which to deal with those mistakes.

Good job, Ben!

Never Let School Get in the Way of an Education

Phoenix giving a hearty "AHOY" with his maties!

Adorable Rio, although he prefers the adjective "cool".

Yummmm. A Chicago-style hot dog!

Curly fries for "Curly".

Just a few of the things I found in Tiago's mouth!

When Pheonix plays hookie it is always with the best intentions!!! Last Friday he took the day off, although at one point in the morning he was standing out at the bus stop (our driveway) in his underwear and backpack, and we headed downtown to see the Tall Ships (historic sailing vessels from around the world, we just called them all pirate ships though!) at Navy Pier.

Phoenix's first day of school

Today will be Phoenix's first day of school. In a few hours, at 11:47am to be exact, the "short bus" will pull up to our driveway and whisk Phoenix off to a special education pre-school. Mom, Dad, Grandma, Grandpa and his two little brothers will be cheering him on as he steps on that bus, recording the moment with our cameras and mapping out his life according to our hopes and dreams for him. Yet here I am thinking about the RETARD BUS.

Let me start by saying that I truly am ok with having a child with special needs. No pity needs to be given. But sometimes I'm just slapped in the face with how I was before Phoenix. I don't think I personally made fun of the "'tards", but I'm sure that I laughed along with whoever was cracking the jokes and I definitely did not stand up to anyone who was making fun of them. One can chalk it up to "kids being kids" or that it was "harmless" (yeah, right!!!!) but I stood on the sidelines and let it happen. I know part of it was "the fear of the unknown/people different from me", but it is my indifference and apathy that haunt me. Why don't I understand or feel empathy until something happens to me personally (i.e. having my own child with special needs)?

Today will be an exciting day. We got a great deal on a DIEGO backpack and Phoenix will be a stud in his blue button-down pilot shirt, navy blue POLO shorts and his new navy blue CROCS. His tan face, curly hair and frequent smile will charm everyone he meets. But there is a lesson here that I wish I had learned as kid- to love, respect and give dignity to ALL people (John 13:34-35).

Welcome to the Club

Our super star riding high on Luke's shoulders.

A portion of TEAM PHOENIX.

MY CLUB.

We all like the sense of belonging. For example, I enjoy the comradery found in belonging as a mother, a mother to a child with special needs, one training for a marathon, a teacher (granted an unemployed one!) and ex-patriot (formerly). This past Sunday I was deeply grateful for the sense of belonging found in the Down syndrome community.

I didn't start out being so appreciative. We did not know Phoenix had Down syndrome until he was born. I handled it very well, thanks to loving support from hospital staff, friends and family, but I was not eager to be part of the "parent-to-a-child-with-Down-syndrome club" nor was I going to act like best friends with strangers just because we both happened to have a child with DS. LOL! How I feared the unknown! And how my attitude has changed! I accredit that largely to Gigi's Playhouse.

This past Sunday, as I pulled into the packed parking lot where the 7th annual Gigi's Playhouse Down Syndrome Awareness Run/Walk was being held, tears filled my eyes. I AM SO GLAD TO BE PART OF THIS CLUB! That phrase was repeated in my thoughts all day. I was so thankful to be sore from running and walking for this cause, to be drained from socializing with so many inspiring people and to be worn-out from everyday life with a child with Down syndrome, yet replenished and excited for next year's event. No, I didn't ask to be part of this club, but it is so much better than I could ever have imagined.

3 weeks in the US

I have been home in the US now for 3 weeks. It has been a whirlwind so far but I think things are finally about to calm down.

Things I done:

- gotten a job (waitressing)

- purchased a car (2000 Nissan Altima)

- applied for Phoenix to start pre-school

- visited Gigi's Playhouse Down Syndrome Awareness Center 3 times

- driven to Minnesota and back

- been to McDonald's Playland more times than I'd like to admit

- visited Wal-mart almost on a daily basis

- gotten a hair cut

- bought bunk beds

- basked in sunny 80F/26C temperatures

- received lots of advice from my parents in all areas of my life

- given lots of advice to my parents in all areas of their life

Things I have not done yet:

- unpacked

- applied for teaching jobs because there aren't any!!!!!!!! (ok, there are some but not where I want them...I will apply for those though!)

- applied for Ben's green card

- gotten a cellphone

- been to a Cubs game

- eaten deep dish pizza

- seen enough of my friends :(

- kept in touch with the friends I left behind :(

- renamed my blog

Our Playground

The coast isn´t only for summertime! (Vardø)

One of the boys´more expensive toys.

Can´t leave the baby out of the adventure.

Trampolines aren´t only for summertime either! In their snowsuits!

A hike and some very organic swords.

I am quite insistant when it comes to the boys being outside everyday. Fresh air, exercise, and vitamin D. The great outdoors has been our playground.

A Laughing Day

I always make this face when I play with Legos!

I´m the tough one- Monster Garage cap and Tigger the Tiger shirt!

I am the baby and can do no wrong! I´m almost always this happy!

I have a friend Vona who is a wonderful mama to 2 boys under 4. And they have Laughing Days. That means that Mama decides to not get upset, but laugh at anything that happens all day! Me, I´m always drowning in my self-criticism, anger, impatience, etc. And many mornings I wake up frustrated and try to cheer myself/all of us up in order to have a Laughing Day but I just can´t let things go that easily. However, Sunday we had an unofficial Laughing Day (thanks Sara!).

First, let me say that Ben was gone Friday to Monday on a boy´s trip to Murmansk, Russia (which would be the equivalent of going to Tiajuana, if you know what I mean). That is fine though, I´ve gotten some trips too. Anyways, being solely responsible for all 3 kids for a number of days does not always bring out the best in me! On Friday Tiago refused to nap which ruins any day! and on Saturday, for some reason, I thought taking all 3 kids, plus Phoenix´s friend, ice fishing would be a good idea! Ok, it took like 2 hours to get everyone ready! It was cold, windy and I was crabby after taking 2 hours to get ready! And Tiago would not let me put him down for a second without screaming! And the smoke from the fire kept blowing in our faces, Phoenix and Rio just kept interrupting the ice fishing (we were with a group of adults) and throwing snow in their holes, and...you get the picture. Finally, through clenched teeth, I said, "After we´re done eating these hot dogs we´re leaving!". It was an exhausting day and I fell asleep with the kids at 8pm.

After all that fresh air on Saturday I did not feel guilty staying inside Sunday and watching cartoons all morning. We painted and played with play-doh too. We just hung out. It was great. The unofficial LAUGHING DAY started when in the evening we walked to a party. The sun was shining and it was a BALMY 4C/45F! My boys were in their snowsuits, matching striped "summer" hats (really thin winter hats) and snow boots. But there was a lot of ice on the road and they kept slipping and sliding on their butts and they were just so clumsy and I laughed and laughed at them! (Cruel, I know!) But they just kept doing it! We all laughed! They found puddles to jump in too. My boys are also funny because when they hear a car they freeze and start waving at the car for like a minute before the car even drives by. It is so cute! At the party we sat with another mom, who´s husband was out at sea, and her 3 girls. So we were 2 adults and 6 kids! Phoenix and Rio of course spend most of the party touching all the desserts. Actually, Phoenix likes to put his WHOLE HAND on cakes, not just a single finger! Ok, I didn´t laugh at that one! We saw an army tank and I kept saluting and saying silly stuff like, "Sir, yes, sir", and they thought I was hilarious! We just laughed about everything that evening, even when Rio told me he ate horse poop!

Life isn´t perfect but it would be closer to perfect if we had more Laughing Days!

Elin´s passing

Elin committed suicide and was buried on Tuesday. I didn´t really know Elin. She was Ben´s dad´s youngest brother´s ex. They had two daughters together. I remember that she wore a red velvet dress to our wedding and that her ex´s toast to us was, "Don´t Marry, Be Happy"! She didn´t have the best reputation according to the family. I think that if you met her in a bar you´d say, "That b#$%& is crazy" and stop talking to her, especially if she was under the influence. Her two children were actually wards of the state, taken away from her by DCFS/barnevern.

Yet I have been so touched by her death. Each time I am reminded it brings a deep sadness to my heart and nearly tears to my eyes. It is so terrible that she believed that this world would be better off without her, no one would care that she was gone, that her daughters would be better off without a mother, that she thought she was so worthless that she actually went through with it. Or who knows the lies that she told herself and believed.

But I GET IT. I get those thoughts. Since the birth of my third son I feel like I have been living in a black hole of despair. I mean it. It has sucked big time. When I visited my friends in Tromsø and I later heard that they were "worried" about me I told that they had reason to be. I really GET why people cut or become bulimic, why Britney Spears shaved her head and why people don´t ask for help (OH WAIT...THEY USUALLY DO BUT PEOPLE DON´T LISTEN, THEY JUST GIVE THEIR OWN ADVICE!...ok, the capital letters makes it sound like I´m really angry at someone but this is a reminder to myself as well as others that we could all be better at listening and affirming.)

So while I GET IT, I haven´t cut, thrown up or shaved my head or committed suicide, like Elin. It saddens me that while we were both mothers, both with struggles, that I am the only one still living.

Edited: Sorry if I alarmed anyone. With the return of the sun, good friends and God´s grace, I now see past the despair. Although like many of us, I still have my days! This post was really about how my experiences have allowed to be more empathetic.

"Dots, No Dots"

Ok, so I know that he really just says "N...Dah" and "Ya...Dah" but I still think this is a HUGE deal!!! He´s actually communicating using spoken language! And I wasn´t even trying to get him to say anything. We were just separating the puzzle pieces and often times I DO say "Dots, No Dots" but this time I didn´t so HE DID!!! I have noticed so many more "words" this week including green truck, toot toot chugga chugga and shake. This is soooooooo exciting!!!

I have recently started using strategies from the book Play to Talk. For example, I talk a lot LESS and WAIT a lot longer for him to respond in any verbal way, then I imitate his response and try to keep the dialogue going as long as possible. I must admit, it is so FUN because he loves that I "speak" his language and it allows him opportunities to practice verbalizing and learns that making sounds gets a reaction. I highly recommend this book because the strategies are easily adaptable and its all about respecting where you´re child is at instead of constantly thinking about where they SHOULD be. Check out the website.

Famous Phoenix

by Gøran Nielsen

by Inge Wahl

The local papparazzi are always after Phoenix! And I LOVE IT! These are just two of the photos I recently received! I think both are great photographers but it does help when the subject is my beautiful Phoenix! Wherever we go people I don´t even know say, "Hi Phoenix!"- the grocery store, the swimming pool, a local event, EVERYWHERE. He was even invited to a cabin for spring break while the rest of us stayed back in town! Yup, he´s famous (at least in this tiny, isolated, depopulated fishing village on the edge of the earth in arctic Norway)!

Sleeping Outside

STEP ONE

STEP TWO

STEP THREE

My friends in the US never really believe me when I tell them that in Norway the babies take their naps outside in their strollers, even in the winter. Here is Tiago sleeping on the back deck. Even in the daycares the strollers are lined up outside during nap time.

STEP ONE- EVERYONE in Norway knits! So when your baby is born they usually receive an adorable hand-knit outfit. Tiago´s is a hand-me-down but you can see much cuter outfits herefor example.

STEP TWO- Put the baby in the sleeping bag (usually made of warm lambswool or down) in the stroller.

STEP THREE- Place netting over the stroller to keep out the snow and wild animals and then a rain cover. Roll the stroller outside, double-check that the baby monitor is on and let your little one enjoy a nap out in the fresh air!

M.I.A.

I have been seriously missing in action lately despite the fact that I have plenty posts written in my head. I hope to be able to share more about our life soon, but here are the reasons that I´ve been MIA.

1- My husband has become a hard-working, fish-stinking dock laborer for the short capelin fish season. This was his schedule the past 3 days:

Monday- 7am- 11pm

Tuesday- 7am- 3pm then a 12-hour shift starting at 8pm

Wednesday- finished his 12-hour shift at 8am and then went back to work 2pm-9pm

So hubby is not home very often making me quite exhausted at the end of the day. What should I do then? Grocery shop, work out, clean, fill out job applications, blog, sleep??? You get the picture!

2- My heart if heavy with indecision. We have been living in Båtsfjord temporarily with a plan to move this "spring". We´re leaning towards moving back to Chicago but we haven´t totally committed ourselves yet and it is frustrating to go back-and-forth and to doubt each other. Plus, we´re being encouraged to stay here and I get emotionally exhausted trying to "defend" why I want to move from here while at the same time not hurting anyone´s feelings.

Overall, I want to be more thankful because when I pause for the moment

L I F E I S G O O D!

Sharing Phoenix

The Phoenix we know and love!

Here in Norway the state offers something called avlastning, which translates literally as "relief". All Norwegians have a right to avlastning but families with a special needs child are greatly encouraged to take advantage of it. The topic is brought up every time Phoenix goes for a check-up, Have you started with avlastning? We have always been hesitant about it; we never felt like we NEEDED it and I think we were somewhat offended by the thought of "relief" from our child. We love Phoenix, enjoy spending time with him and he is our responsibility! And I even felt like they were saying that we don´t spend enough time with the other kids because Phoenix demands so much attention, like he´s just work or something. While those were assumptions, I still feel parts of those assumptions are true, that there is some internal change that must take place in Norway´s attitude towards the disabled.

At our most recent "early intervention" meeting we were again encouraged to consider avlastning. Our response was that we haven´t taken advantage of it because we don´t know anyone that fit our criteria. Soon after that meeting one of the people attending offered to be our "reliever". She has a husband and two young girls and a cat and she was already excited about taking Phoenix snowmobiling at their cabin...and that is when my attitude toward "being relieved of Phoenix" changed.

I am choosing to see avlastning as awareness. Of course it is AWESOME for Phoenix to be the little brother and get tons of attention and do things he loves like snowmobiling. And it was nice to just have the two younger kids and more one-on-one time with Rio. But what excites me the most is the impact that Phoenix will have on this family. That two adults and two young girls will see a person with special needs as an individual who deserves respect and dignity. That someday when someone uses the word "retard" or makes fun of the disabled kid they will stand up for that individual, because they knew Phoenix, because he was a part of their lives and they liked having him around. It might sound strange, but I´ve always had this feeling that I need to SHARE Phoenix with the world. I need to share him because people need to be EXPOSED to him, to people different from themselves, to learn from him and to be stretched by him.

So we shared Phoenix with a wonderful family this weekend; moreover, we shared our dream of a world where all people are treated with respect and dignity.

American Idol audition

When Rio was first born and I was struggling with life's transitions- going from one to two children, moving to a sunless place where we didn't know a soul and no special ed services for Phoenix- I was really discouraged. It was then that I found author Barbara Curtis, mom to 12 kids, 4 with Down syndrome. I read her blog and wrote her some desperate emails that she answered promptly and wisely, even though she didn't even know me! Her wisest words to me were that God doesn't call the equipped but equips the called.

Here is her daughter's audition for American Idol and some great press for the DS community.

LOSER!

So I guess Phoenix is a "loser" because he has Downs. Yup, that's what we learned from the director of the daycare. Apparently a boy was asked why was crying and he responded that someone had called him a loser like Phoenix and then named the other boy in daycare with Downs. Hmmm. I'm almost more shocked that children so young use the word "loser" and then equate it with special needs. Is a "loser" someone who doesn't have verbal skills? I guess he could mean that Phoenix doesn't have a lot of friends. I mean, Phoenix probably doesn't get invited to play with the other kids. An adult usually has to be there to help him interact with others, namely because he doesn't have verbal skills and doesn't always understand the rules. Plus, Phoenix's idea of fun isn't always the same as a typical 4-year-old's. For example, when we play soccer with the boys Phoenix thinks it is fun just to steal the ball and hide it instead of kicking it back and forth. This is obviously annoying to Rio and even to me! I just wonder how the boy came to the conclusion that Phoenix and the other boy must be losers because they have Downs. Calling Phoenix "retarded" ALMOST seems more appropriate than calling him a loser.

I'm not teary-eyed and heart-broken about this. Of course it saddens me but I'm more like...and so begins the bullying. It is terrible that I just EXPECT that this is part of parenting a child with special needs...in a perfect world the popular kid would befriend Phoenix and thus the rest of the school would see Phoenix as this sweet, quirky human being who contributes his part to society and deserves just as much dignity and respect as anyone else. Do I expect Phoenix's younger brothers to protect him from such bullying? YES! Is that pressuring them? Or maybe they will be bullied because they have a brother with special needs and they'll come home crying that they wish Phoenix was normal. THESE kinds of thoughts do break my heart.

I guess the future is unsure no matter what kind of child you have, typical or non. Most people have heard the following speech, but I want to hold myself and our family to these standards. It seems like lately (probably a result of lack of sleep due to the baby) I am impatient and angry with Phoenix and not setting a loving example for Phoenix's siblings. Giving into those feelings and then taking them out on Phoenix is my sin. I have a lot to learn from this high schooler.

Babies, An Acquired taste

n.
One that is unpleasant on immediate experience or is likeable only after being experienced repeatedly.

I was trying to explain to Ben what this expression meant and I told him it was like learning to like red wine or espresso. Am I comparing my relationship with my children to food items that need to be tasted a few times before you like them? Well, yes, at least the baby stage. I always said that I wanted my kids to pop out at age 2. Babies, no thank you. They don't do anything but cry, right? When people used to ask me if I wanted to hold their baby I always said no. Before Phoenix was born I had only held 2 babies in my life- one like 10 years prior and another one THE DAY BEFORE Phoenix was born (I truly believe that lingering baby smell is what started the labor!). So babies have never been my thing! I received a baby shower card which said, Thank God they don't come out as high schoolers. But since I've been a high school teacher I didn't think that sounded all that bad...and then came baby number three, Tiago.

I'm not dissing Phoenix or Rio. I'm just totally enamored with Tiago! He is after all, our last. More importantly, however, I think its the first time I actually know how to appreciate a baby now that I have been substantially exposed to them! This is what I'm thinking. With Phoenix, he was our first. We were clueless about babies AND Down Syndrome, which led to general parenting insecurities and worries, plus, having to "work" so much with Phoenix on his therapies. Baby number two, Rio, nearly ruined me! The transition from one to two (and moving to Norway, a new city in Norway, during the darkest time of the year, no Down Syndrome network, etc.). A friend and I seriously considered writing a book called, When 2 Feels Like 10, because we just couldn't believe that no one had warned us about this! (By the way, we both have 3 boys now.) Those were seriously the most depressing days of my life and it lasted months...and then came baby number three, Tiago.

Tiago is by no means a perfect baby. As a newborn he was awake all the time, had terrible gas and cried for hours, hated the car seat, nursed non-stop for hours, and still HATES sleeping at night. But, oh my gosh, I think he's the cutest thing in the whole wide world! I could hold him all day if I let myself. I think he's so handsome and so strong and I am just utterly and completely enamored by him...and, like red wine, I appreciate this baby .