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.