Tuesday, May 29, 2012

Oh Bear

I decided to sell some of 'my' baby stuff. Really, it's not mine. That would be weird if I used it! (You encouraged it, you said I should be weird) So, as I "swept" the sweating, dirty, detached garage floor and watched Calvin swim and drink his way through it, the following animal thought it should venture on over across the road from us.





I had enough of Calvin's dirt fest and decided, together with Joe and the other boys, we should get the little dirt balls in to wash them up and have some down time. Had we decided this just a few minutes earlier or later we would have missed it. It was very exciting, in a way. Joe took The Q (Calvin's official nickname) and I ran for my camera. He was moving so slow I knew I would have time. Coolness. Again, in a way.

Monday, May 28, 2012

A difference a day makes

Today, in honor of remembering the brave men and women who have provided me with the ability to sit at my computer, typing whatever the heck I want, while nursing Calvin and deciding what I will do in 30 minutes from now, I will spend some time remembering.  After all, we all have days we sit looking at the clock thinking "This time yesterday (or 10 years ago) __________".

Sometimes looking back is plain old heart breaking.  Other times it is scary, or overwhelming, or amazing. Living life to the fullest puts us at great risk of strong emotions.  Quite frankly some of us come up with these protective mechanisms to shut down either the possibility of or the current existence of said emotions.

Two years and 1 day ago, I experienced emotions that aligned with those I felt when my Grandpa Ajer died.  Gut-wrenching sadness that hurt so bad I felt sick.  Those feelings where you finally fall asleep and proceed to toss and turn and wake up at the first hint of morning only to remember something is seriously wrong.  Then the hamster on the wheel gets up to speed and you remember.

For me it was Calvin's diagnosis of Down syndrome. (Yeah, I know, it could be worse but at the time, that was the worst.)

After I got home from work on the 27th I think I went about my normal (as normal as waiting for amnio results can be) routine.  Around 5:30 (I think, I might have to look back) Joe said there was a message from the genetic counselor.

"What?  You are just telling me this now?  This is a big deal!"  So, my heart pounding in my chest, I made the call to the woman.  She left her home number, which I thought meant a bad sign. She was heading out of town for Memorial Weekend and wanted to talk before she left.

Her life was continuing as normal.  I couldn't imagine normal.  Never again.  She so nonchalantly proceeded to tell me that my baby has Trisomy 21 (Down syndrome).  "Do you have any questions?"  I could not speak.  I handed the phone over to Joe.  Hoping he would make it go away.  Fix it.  Hear her say something different.  Nightmare.

My life became a nightmare.  I could not believe it.  I cried and cried.  Now my dad teases me for it.  But I quickly remind him that he sometimes said he would never want a child with special needs.

That night I said that to him.  He quietly replied "I didn't know what I was talking about" and he reclaims that to this day.  Because he is right, he didn't know.  And now he does.  And he is grateful.  And so am I, and all of Calvin's family and friends.

This is what I remember over Memorial Day weekend.  And I always will.  I will never forget and I do not want to.  I want to hold on to the pain because it carries me through my current glimmers of fear and pain.  Yes, they still shine now and then.  Like when I watched a 2.5 year old girl with Ds and she did not say words.  It scared the crap out of me.  For about 20 seconds until I gently reminded myself that any and all my fears have been unsubstantial and I am happy with Calvin just the way he is.  I have learned and maybe someday I will not be scared anymore.

Tuesday, May 22, 2012

witty whit whit

God I love the wittiness in the pigeon books.  I wish I was witty.  All the time.

I would say exactly what is on my mind and people would just think I'm funny, not weird.  Cuz lots of people think I'm weird when I am being my goofy self, so I don't like to be my goofy self very much.  Which is too bad.  I should just drink more, then it wouldn't matter.  Except it would, cuz I don't like to drink much.  People get hurt and I would not do a good job as a mom, a counselor, a photographer, a wife, and whatever else it is I do.  Which is everything.

I am going to die pretty soon if I keep this up.  Just kidding.  I shouldn't kid like that.  Now you think I'm weird.  I am weird.  But I like myself.  And I like people who like me even though I'm weird.

Like when I put on a short presentation to parents a couple weeks ago.  My friend and co-worker Kim and I put our brains together and came up with a magic show about Love and Logic.  We have to do this statistic gathering side show and therefore asked parents if they would like more and how useful it was.  That sort of thing.  Then we asked something like "if not, why?" and we were going to add which presenter they liked better, like this: Do you like Ilisa or Kim better?  And we were going to give the option of neither.

Who wouldn't want to come to our presentations?  We rule.  No, you do cuz you're putting up with this awful blog post.

So I read this thing the other day and it was about how sinful we are because we are so self centered.  Well, I couldn't help but think about this whole blog and how self centered it is!  No wonder I only get like 5 comments.  People must really be sick of reading about me and my family.

"Blah blah fricken blah" is what I'd think if I read about us all the time!  Really, why not just post pictures?  Who has time to read this crap?!  Just kidding.  I know you like to cuz it's like a soap opera.  Drama this.  Brama, I mean drama, that.

Speaking of Brama, do you think Barack is going to be our president again?  I remember when I had Nolan, I was in the hospital, and that was all over the news.  It was September 3rd and 4th.  He was born only on the 4th, that would be something if it was both - I went to the hospital on the3rd.  Anyways, I remember looking at Palin thinking "Down syndrome".  I don't think I knew.  Well, of course I didn't!  But now I feel this sort of kinship with her and her family.

Just kidding.  That whole last paragraph was just to throw you off and take you for a ride.  It really doesn't matter.  None of this does.  Are you still reading though?

Honestly, I am blogging like this because, I kid you not, I have 1,000 things to blog about.  In fact, I have started other posts that are just sitting there.  It is like I have so much to blog about that I can't blog about anything.  Like what Calvin is up to.  He feeds himself a little now.  He is starting to eat some gluten.  He has been sick but doing pretty good, thanks to the absence of adenoids.  I am drained by everything else in my life.  But there again, center of the universe...we all are busy!  And, I do this to myself.

Speaking of busy, my contract for next year is sitting at my desk.  I have not signed it.  I have not decided yet if I want to.  I wish God would come visit me and tell me what to do cuz I have no freaking clue and Joe won't give me an answer.  Neither will my mom, or anyone else.  I just wish decisions were easier.

I am going to stop now and share some pix.  Have a great day.  Soon I will be able to blog more and tell you all about my family - really I am surprised people care that much! ;)  Love you!















Tuesday, May 15, 2012

To The Max

Today is the day I lost it.  Screamed.  Loud.  A few times.  At the kids, to shut up and leave me alone.  (I do not say shut up often) Sometimes I don't think I can take anymore.  One minute I'm dealing with it with a positive attitude.  The fevers, the crying, the demands, the "more more more".  Why can't Calvin just go to sleep?  I don't have time for everyone.  Then people are real assholes when I don't do what they expect.  Really?  'You have no clue' is what I feel like saying.  I am a good person.  Far from perfect.  I am selfish.  Sinful.  Unloving.  But I am also trying my best and turning to God.

I go go go go go.  And for what?  I am burnt out.  I want to quit sometimes.

When Nolan doesn't like the shirt, or his blanket isn't dry, or he's sick and tired and needs me the most.  When Evan want my attention.  All the time.  Because he wants to share his life with me.
When Calvin wants me to hold him and never let go.  To nurse him or be with him longer.

I blog about it because I want to remember this.  I want to remember it because some day I'll miss it all and want to go back and do it again.

(After I calmed down I sat all 3 boys down and told them it wasn't fair to treat me poorly because the blanket isn't dry or I can't jump up and make lunch right then and there.  I told them we are all sick and need to work together and with God we will be able to do it.  Things felt better after that - I sure didn't feel as guilty!)

Friday, May 11, 2012

Happy Mother's Day!

Karen, the kids' daycare provider, asked Nolan (3.75 years old) a few questions about me:

My mom is 5 years old. 
My mom's favorite food is macaroni and cheese and hot dogs
My mom works really hard at making homework.
My mom really likes to talk.
I like it when my mom carries me.

Love this, Karen!  We are so grateful for Karen and her family and the kids at daycare.  The boys LOVE going there and she always makes us feel wanted and loved.  Karen was there for many teary mornings 2 years ago (I cannot believe it has been that long).  She has been so helpful, supportive, and patient (to name a few traits).  Happy Mother's Day, Karen and all the other Mom's out there, including Grandma Linda, Grandma JoJo, and Grandma Jan!  We love all of you!   


Sunday, May 6, 2012

Reflux & Supplements

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Calvin has had his adenoids out for a month now.  He has a little cold and it is not amounting to much, so that is a huge success!  He has slept through the night twice in the last week (and I hope tonight as it is late and I'm going to pay tomorrow morning!).
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Right after getting home from the hospital, the day after Easter actually, Calvin's reflux was bad.  I spent some time in a real low spot because I work so hard to help him.  I feel like there has to be a reason and it is my mission to figure it out.  That week was pretty bad but got a little better.
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As I put A and B together I started to question his supplement regime.  He was up to 1/2 tsp of Nutrivene D, 1/4 tsp curcumin, extra vitamin C, choline, and sometimes the daily enzyme from Nutrivene.  I would also give him extra melatonin along with the Nutrivene D nighttime supplement.
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Sounds good and healthy, does it not?  I thought so too.  But I have come to realize it may have been too hard on his system.

I called the company and was left with a promise to have some 'know-it-all' (in the sincerest sense) call me back.  Sure enough, some big-wig called me back and spent 20 minutes with me on the phone.  We came to the following conclusion:

1. Feed Calvin smaller meals, more often
2. Make sure Calvin's meals are thick!
3. Cut the extra vitamin C, curcumin, choline, melatonin, and nighttime supplement (we also talked about his junky sleeping)
4. Cut the daily supplement in half, so down to 1/4 tsp a day and split that between 2-3 meals, with the last dose no later than 5pm
5. Continue with the probiotic
6. I forgot to mention the Omega 3s, so we're continuing with those.

In summary, Calvin now only takes the daily supplement twice a day (1/8 tsp each time), a probiotic, and the omega's.

Finally, I was sent a sample of the daily supplement that does not have the vitamin C or 2 other enzymes - I forget those at the moment.  He has been on this version a week and is doing well.

Overall I have to say I am noticing a large improvement.  There is still some reflux but we discussed this and it most likely will diminish as he becomes more upright.  I am continuing with a dairy and gluten free diet for Calvin.

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(Joe likes to hike the kid's pants up and proclaim they represent my Grandpa Sykora)
There you have it!  Excellent customer service with NuTriVene (I miss spelled above, oh darn)!  So thrilled with them, as I was back before Cal's heart surgery and they got back to me quickly after I presented them with a question via email. untitled_2012_0001-47

Wednesday, May 2, 2012

tri rhymes with eye

Calvin's dad asked where the eye appointment was at.  Why is that a big deal?  For one, I am giving up on feeling like I need to be present for all his health appointments and two, if I should die (which I will, but I mean in the next 2 years years) Joe will know where to take Calvin for his eye appointments and three he also knows what I go through!  Letting go; it feels amazing...oh, and his eyes?  Great!  So, my fear (which is old) of Calvin needing glasses was once again, wasted energy!
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Always happy?  I think not!  Nolan to the rescue!  They are still quite the pair, which I realize I do not blog enough about these busy days!
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Evan and Nolan came up all cute and sweet, wanting to talk about their trip to Aunt Chrissy and Mike's last Friday, the night before the triathlon.  They make me miss them and it is a good reminder to enjoy them.
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I did not 'bare' all at the triatholon.  But, I did wear thin undies under some shorts and shed the shorts before throwing pants on for the 13 mile bike out in the windy cold!  It went very well and I am grateful for the experience.  I am also realizing this is more a lifestyle than just running.

My goal was 1:45 and I finished in 1:39, placing me just inside the top half of 15 women.  I felt great after and could have given it more, but I just didn't know.  The worst part??  Numb toes which I think is nearly resolved thanks to Chris (3rd from left and 1st place for men) adjusting my bike last night.  I am looking forward to a different summer in the exercise field!
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We celebrated Grandma JoJo's birthday!
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A post about the garden will be in order here very shortly!  So many things to blog about and such little time.  I still need to post about the supplements...and update the blog pages...and, you know how that goes!
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Evan and Nolan played so nice and Cal just wanted in on the action!
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My heart flutters with Joy every time I see him be a typical 1 year old boy - and it is 99.999% of the time!  Like when he pulls his socks off 3 seconds after we put them on, or when he plays peek-a-boo with Grandma Linda, or when he prefers trucks over dolls.  This is the life and I wish more people got to live it!!