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 .

No Sleep Till Brooklyn (or sleepLESS children)

I want to blog but i have NO TIME! I have sleepLESS children. Phoenix is taking 3 hours to fall asleep (3 hours of putting him back in his bed), Rio has night wakings and don't even ask about 5-month-old Tiago. Grrrrrrrr.

But HAPPY NEW YEAR!

Officially Christmas???

Being his father was Jehovah's Witness, my Norwegian husband has never celebrated Christmas nor have I experienced it here in Norway. Thus I don't completely have a hold on the season's traditions but here are some observations nonetheless.

Christmas is not just 1 day here. It is AT LEAST a month long.

- it starts the first Sunday in December when the first advent candle is lit

- there is a lot to get done- cleaning every nook and cranny of the house, changing the curtains and other decor because everything must be RED, baking the 7 types of cookies for Christmas dinner, building a gingerbread house, making an advent calendar for each child with a gift for each day (fun!!!), homemade pork and ham rolls, gløgg and so much more!!!

December 13

- Santa Lucia Day, only some Norwegians celebrate this while it is a must in Sweden...hey, any excuse to add light to this dark period is worth it!

December 23

- the fun begins

- this day actually has a name- Little Christmas Eve

- today many families decorate the tree (a real tree usually), they often have little Norwegian flags strung around it, and eat rice porridge (one lucky eater will get the almond and have a year of good luck), saving the leftovers for the following day

December 24

- other families decorate the tree on this day

- families gather for a big meal together consisting of steamed dried lamb ribs (pinnekjøtt), roasted fresh ham (ribbe) and rutabaga or lutefisk, dessert being the left over rice porridge whipped with cream and topped with a raspberry sauce

- in the evening gifts will be open

Dec 25 thru New Year's Eve

- Christmas continues...many people have off work so there are still Christmas dinners, parties, kid's activities, etc.

- Dec 25 is called the FIRST day of Christmas

- Dec 26 the SECOND day of Christmas

Jan 13

- you better have your lights and tree down by this day because Christmas is officially over!

My nightmare

Since I'm the early bird of Ben and I, when Ben got up with Phoenix this morning I delighted in the chance to get some extra sleep. Sleep I got but it was marred by this nightmare.

I had invited a bunch of people over. They were flying in from all over the world. I just invited them without planning out anything. It was a Saturday when they started showing up. I was nursing and suddenly I was like, Shoot! I have to get to the store before 6pm because that is when they stop selling beer here in Norway!!! The liquor store (yes, you can only buy liquor/wine at a government owned store) was already closed and wouldn't open again until Wednesday (all true). But while the store where I could purchase beer was just across the street I couldn't get there because it was so icy and I just kept being blown away from the store by the strong wind (yep, its been really icy and windy here lately). When I finally got to the store it was after 6pm so I made my way to another store to buy food but I kept going up all these staircases and could never find the area where they sold groceries. I had to hurry up and get there because the shops close early on Saturdays and nothing is open on Sundays (like in reality). Even more true to life was Ben's reaction in the dream saying, I'm not going to help you. YOU invited them! (But in reality he would save my a** and for that I am grateful!).

When I woke up from the nightmare I decided it wasn't worth going back to sleep. Too real!

Life with Down Syndrome

So the other day I was in the bathroom with all 3 boys changing Tiago's poopy diaper. Since I have 10 stitches on my knee cap I couldn't get up to turn on the water in the shower. In desperation as to not get poop all over the place, I asked Phoenix to turn it on and HE DID IT! It was so exciting!!! I was yelping and PRAISING him like crazy, "Great job! Thumbs up for following directions!". The whole thing almost brought tears to my eyes; I was so proud of him for being so helpful, responsible and for doing what I asked!

And then I just had to laugh and smile to myself and thank God, seriously, for giving me a child with Down syndrome. We get to be excited about the smallest things! I'm not saying that we have low expectations for Phoenix, but somehow some things are a big deal when Phoenix does them. Not only do we get to get excited a lot, we also get to be part of some pretty cool "clubs"- joining families with a child with DS and special needs in generals in supporting each other and sharing information. Additionally, we now know a plethera of therapists and have gained knowledge from them in areas we never thought of before! Most importantly, Phoenix provides us with opportunities to grow. He challenges us often in the areas of patience (grrrr...I am not always a willing student!), tolerance and human dignity and our own inhibitions.

I grow most when Phoenix acts with a total lack of inhibition. I love when Phoenix laughs really hard in public (the kid even laughs in his sleep!) and/or reaches out to strangers. In terms of laughing, the parent in me wants to tell him, "Use your inside voice", "Not so loud, please, we're on a bus!" because I can't say, "DON'T LAUGH SO HARD! THAT'S BAD MANNERS!". That sounds so ridiculous but I think on some level that is what I mean. I'm uncomfortable with someone just laughing their head off. Its socially abnormal and the fact that my child is doing it embarrasses me. And that is when I'm stretched! Why shouldn't we just have a good belly laugh session on the bus sometimes??? Regarding touching, again the parent in me wants to say, "Control yourself", "Don't touch strangers". But once at church they had this great message called Touch and how important it is, especially when breaking down our fears of the unknown/unfamiliar, for example, people who are handicapped, have special needs, a different ethnic background, whatever our fear is. After that message a woman I didn't know smiled to 2-month-old Phoenix (who had an oxygen cannula in his nose and an oxygen tank beside him) and he gave her a HUGE grin back and this was before he could even smile! She wrote me a letter and told me he had changed her life and that she knew he would continue changing lives. What encouragement for me! So, for the moment, I allow Phoenix to stretch me and stretch others by ignoring certain inhibitions.

I don't have that "perfect angel, sent from God, always happy" Down syndrome child (I doubt that stereotype really exists). He throws fits when he doesn't get his way, often wakes up the whole family at 5:30 am, is a picky eater and just wants to watch tv all the time (this one really gets me!). But in my opinion, I have the most lovable 4-year old son who enriches my family's life daily. Amen!

Motherhood in the Arctic

On days when both Phoenix and Rio are in daycare I usually take a one-hour walk while Tiago naps in his stroller. I am so thankful for these moments- whether listening to my ipod, walking with another mom or experiencing an awesome sky like this.

This picture was taken at 12 NOON. And, yes, that is the sun SETTING! We haven't seen the sun for weeks and won't see it again until February. While the sun is still above the horizon we see only it's rays because of the mountains. Mørketiden (arctic darkness) is by far not my favorite time of the year, but the light it produces is amazing and unique.

When all the kids are home and not in daycare this can be our day:

• Tiago starts wimpering which means it is naptime. Throw some hand-knit wool clothes on him, stuff him in his sheep skin sleeping bag and toss him in the stroller to sleep outside.
• Try to motivate Rio and Phoenix to put on their hand-knit wool layer and then their snowsuit, mittens, hat, boots, etc. so we can go outside before it gets dark!!!
• Get outside and again try to motivate them, this time to play together nicely.
• At about this point Tiago has to start crying so I push him in the stroller while playing referee for Rio and Phoenix.
• Get really frustrated and walk away from Rio and Phoenix. What do they do? Rio falls down a hill and I can't find him and Phoenix is sprawled out on the pavement staring into space.
• Find the courage to try this again...Tiago falls back asleep, walk with Rio and Phoenix to the "park" (2 swing sets and a sea-saw) where Tiago starts crying again and the boys start arguing.
• How does this end? I push Tiago in the stroller for about 30 minutes trying to get him back to sleep while Rio follows me crying "Mama" and Phoenix lays on his belly licking snow. AND I'M CRYING THE WHOLE TIME wondering what I'm doing wrong to make my kids behave like this???!!!

To make matters worse, DH cannot handle situations like this. No empathy. He just thinks I'm nuts to cry about something like this. And then we argue. And argue. Finally, we realize that with 3 kids and everyday life stuff we've put our relationship last and by the time we get to "us" there's no time left in the day or we're just too exhausted to put any effort into it or there's a kid in our bed and a mother-in-law in the living room.

So today when a discussion became a yelling match it actually felt good because we were COMMUNICATING! I felt like I hadn't heard DH's thoughts in ages! Conclusion, it starts at the top. If Mom and Dad are good then chances are the rest of the family are good. GEEZ! WHO WOULD THINK THAT AFTER 13 YEARS OF MARRIAGE AND THE THIRD CHILD THERE WOULD STILL BE SO MUCH TO LEARN!

Treasure Hunt

Believe me, we're not always this creative!

Phoenix and his pirate booty!

Rio giving a hearty "A-hoy"!

Relaxing and enjoying the spoils.

Check out the pirate tattoo on his leg!

Depression

Maybe it is post-partumn? The baby blues should be over by now, right? I can be in a funk for days lately. I'm perfectly fine now, loving life, finding joy in motherhood and not complaining about the arctic! But I was so down for about 4 days, in a bad place- withdrawn, hyper-sensitive, anxious, crying, feeling lonely. For the most part I'm able to put on a happy face for the kids, but in other moments I'm dry-heaving trying to cope with a simple task like putting away the clothes or a mistake I made that really anyone could have made. I just beat myself up like crazy telling myself how stupid I am. Once I start with one negative thought I just can't stop until I feel like vomiting.

During all that I went online to check out symptoms of depression. I had to laugh because it was exactly the words that I'd been throwing around in my head- feeling restless, crying a lot, feeling worthless, etc. It said that the treatment was "talk therapy". And then it was SO OBVIOUS how important community is to ME. I love my friends and I love SHARING life with people. I haven't found my place here yet, but I am usually fortunate in that wherever I go I find good people. I'm sure this year in Båtsfjord will be a fantastic adventure, but when things get hard I'm going to especially miss my amazing network back home. I LOVE YOU ALL! I'll be making good use of email and skype then! xxoo

p.s. I love my newly found blogging community as well!

Birthday Boy!

Showing he is 2 years old.

He ate four cupcakes! And ice cream afterwards.

Fortunately he hasn't lost the cheeks yet! Birthday crown compliments of daycare.

This year our celebration consisted of me, Phoenix and the guest of honor Rio. Whoo-hoo! We ate homemade carrot cake cupcakes (a tradition from my childhood) and watched an 8 minute video I made of Rio.

Better than Vigeland

"Angry boy"

Phoenix is much more interesting to these Japanese tourist than the sculptures!

Yes, they all wanted individual pictures with the boys!

Phoenix had another idea! A Wiggles dance instead!

Taken in the park by Daddy.

Oslo is home to an amazing sculpture park. Vigeland Park is the largest park of its kind made by one single artist in the world. Covering over 80 acres, Vigeland's lifework contains more than 200 works in bronze, granite and wrought iron.

All that is to say that while surrounded by this spectacular artwork, a group of Japanese tourists stopped to take a ton of pictures of OUR KIDS!!! I guess they thought it was cute that they were walking around the park in their matching rubber boots with a blue guitar in hand. I am especially proud that even though Phoenix looks different they still wanted to take pictures of him. I laughed so hard at the spectacle that I cried!!!

Here are more images from the park:

The Monolith

The Bridge

Google images

Celebrating w/the king at BK

lover of Pirates
Happy
fOur
affEctionate
woNderful
wIggles fan
eXceptional

Phoenix is 4

Happy Birthday!

Tiago's birth

click picture to see the album

If you didn’t see these pictures on facebook already here is the newest edition to our family…introducing Tiago Amante Nystad, born 4 august, 4060g/9pds, 53cm/21in.

Since I was 10 days overdue I was sent to the hospital for a check-up. The hospital is 3 hours away so I was fearful that they would make me stay there and induce me. That is what happened with Rio as I was 12 days overdue and it led to complications in his birth, a long recovery on my part and a little depression.

Ben and I took this amazing CRUISE SHIP to the hospital. We don’t have a car so this was one of our options. We were excited to have a night to ourselves enjoying the onboard luxuries like the outdoor Jacuzzi, the views of the midnight sun, sleeping in and a big breakfast. However, my contractions started only one hour after we boarded the ship. That was exciting!

When we pulled into the final port at Kirkenes, I was in transition. I was laboring infront of all the German tourists. I must have been quite a scene! The ambulance picked us up at the dock and when I arrived at the hospital I was full dialated!!!

It was a great birth with lots of help and support from Ben. But I must admit that I’m a screamer when it comes to pain and I know that Ben was just laughing his butt off behind my back!!! I’m thankful he hid it from me!

Now we are in MAJOR ADJUSTMENT period. Tiago's big brothers are super sweet with him, but Mom has the guilties. Thank you GOD for my husband. He is so helpful and full of lots of grace! AMEN!

well-baby visit

So we're back in Båtsfjord, Ben's childhood home. It is even farther north than Tromsø and much smaller. Yes, we have moved here! I fought it but there are lots of good reasons to stay here for awhile, most importantly, awesome services for Phoenix...and then there is the small town charm.

Yesterday the nurse CAME TO OUR HOUSE to check Tiago and complete his first well-baby visit. I love that after the visit she sat down with the family and ate a piece of cake and we talked about baking! Small town charm...I hope its enough to keep me "happy" living here on the edge of the earth!

i <3 trash

Boys are so much fun! Look what they get into! Having fun in the trash containers!

Bros