Wednesday, March 28, 2012

Just Chillin': A Post From Calvin

My mom has been so busy she asked me to write a post.  Sure, like I have time!  I am so busy playing and saving energy for recovering from yet another cold!  That is part of the problem.  I have been getting in to things a lot more, like house plants.  I think it's awesome they still think they can have plants on the floor and not think I'll start to find them attractive!  I am a boy after all!  Hopefully they don't put them outside for the summer, but I think I over heard mom saying that after she took me away from the dirt pile this afternoon.
Photobucket
Like I said, I am saving energy for another cold recovery.  I hate being sick and these tubes aren't quite covering it.  They keep getting plugged and by the time they burst through, I have an infection.  It's gross and I cannot hear very well.  I need to hear when Nolan is coming!  And, my mom wants me to start saying something, like 'momma' or 'dadda'.
Photobucket
I have my own language and I love blowing her kisses.  Speaking of love, now that I can pull myself to standing so well I do enjoy going up to Mom when she is sitting on the floor.  I pull myself up and give her hugs and let her hug me.  We both like it very much!
Photobucket
I figure I best be giving her lots of hugs since I still don't sleep very well.  Last Thursday grown ups discovered these molars poking through.  Yep, just shy of 20 months!  Finally getting some chompers, but not enjoying the process.  Teething plus a cold makes for some serious misery and complaining.  Mom and Dad have been stressed.  I remind them I don't try to make them miserable!
Photobucket
(me & Baby Adrianna)
Something that might help is that I am having my adenoids removed next Friday.  So much for 'good' Friday!  And, I have to have my ear tubes replaced.  Dr. Becken thinks cleaning everything out will help so I do not keep getting so many sinus, ear, and eye infections.  I sure hope so!
Photobucket
The biggest bummer is I have to spend the night at Children's in St. Paul.  Dad asked, "Why don't we just move in there?".  Talk about dramatic!  (These pictures were taken after I woke up in Mom and Dad's bed - a place that I don't always cry about being in the middle of the night.  I am sporting some nice bed-head.  Do you think the ladies will like it?  Maybe Cora or Kristen or many of the other girls mom reads about?)
Photobucket
My mom is trying to harvest the money tree before it has matured.  She wants her new camera "to study and learn while we are at the hospital; to pass the time".  I sure hope she gets it!  She is pretty excited about this photography business!

Mom says she is not sharing a lot yet because she wants "the pieces in place" before she does.  I'm not quite sure what that means, but she has been meeting with people and spending a lot of time learning.  She has a new mentor, Beau Petersen of BP Photo.  Beau actually went to school with Dad and he took their wedding pictures almost 10 years ago!  Beau is nice.  Grandma Linda has his daughter in her pre-school class and Beau and Bethany have been at some of my uncles weddings, taking photos.

They also took photos of my new BBF's parents when they got married.  Yeah, you know Will?  He is pretty cool, like me.  I just hope we don't fight over the ladies.  We are going to make a  good lookin' pair!  Mom took this photo of him last weekend:
Well, that's all for now.  I am sick of the computer.  I'd rather play in dirt.  Or with my toes.  Besides, I am much too squirmy for this!

Sunday, March 18, 2012

too nice out to work

Okay, I have been feeling pretty good about being back at work, but this weather is doing me in!  I am ready for summer vacation.
PhotobucketPhotobucket
Really though, I still suffer from a lot of guilt about working.  Right now I feel pretty anxious about going tomorrow.  I have so much to do at home!  Yes, I realize I do that to myself.  But I am here to live and I still have the energy for it.
PhotobucketPhotobucketSpeaking of, I have not shared a lot about my new adventure with photography.  The reason is there are a lot of open ends right now.  Stuff is changing and things are being ironed out.  So, that will have to wait.  Stay tuned though, I am very excited!
PhotobucketPhotobucket
In the meantime, I have realized this past week that this blog can be (and hopefully has been)  a very powerful tool for the Down syndrome community.  See?  Even Cal is excited about that!  (going for a walk to the park with Cousin Adam and Auntie Katie)
PhotobucketPhotobucket
Having a new baby down the road who has Ds has really been an altering experience for me. (We went and met Baby Will today and he is doing amazing and so is his family!) I realize how far Calvin and I have come.  I feel like Ds is not a big deal.  Sure, I have no clue what is to come for him, but I am pretty sure it will be okay.  Either way, I pray for peace and acceptance.
PhotobucketPhotobucket
When I was awaiting Cal's diagnosis (during pregnancy) I never once prayed that he wouldn't have it.  I knew he would.  I prayed that I would feel peace and make it through.  The results: I do, and I am.
PhotobucketPhotobucket
Calvin is such a joy in my heart.  He opened me up to a world I would never have been a part of.  I do not only mean Down syndrome, or disabilities.  I mean photography, friendships, advocacy, health, education, acceptance, patience, God, and so much more!  I blog because I want you to know this world and be a part of it with us.  I want you to remember Calvin when you look at all people.  I want you to advocate for him, and others like him.  I want you to not fear people who are different than you.  I want you to know that being healthy makes a difference in your life.  That God has a plan and He does not make mistakes.  That patience really is about handing it over to Him.  And accepting people means you accept Him!
PhotobucketPhotobucket
If you have beliefs other than mine, then adapt them.  Love is universal.  Photobucket

Sunday, March 11, 2012

Dear Mom and Dad: A letter....

Dear Mom and Dad:  A letter for parents holding, or about to hold, a newborn with Down syndrome*

Dear Mom and Dad,
Today you were given a precious and rare gift.  I wish I would have just had a miscarriage.  Maybe he will not live very long.  I wish I did not have him.  Forgive yourself. 

You will love him and cherish him.  He is your child.  What if he is in diapers until he is 13?!  What if I do not think he is cute? What if he does not speak?  Is he going to need glasses?  Is he going to know I am his mom? What if...?  Is he...? Do not be afraid.

You will meet the most amazing people along your journey.  "Normal children ______." "Is he _____ yet?" What if they do not want to hang out with us anymore? Surround yourself with supportive people. 

You will fight for this child.  You will want the best for him.  "Down syndrome people..." "That's so retarded." Orphans. Other disabilities.  Advocate for yourself and your child.


He is rare and special.  There is no one else like him and you love him so much.  He's not ____ yet.  She's younger than him and he's not doing that yet. "He's so small!"  Do not compare.  


You will celebrate and rejoice in his successes.  You will see the world in a new light. I thought he would be ______ by now. When is he going to get past this baby stage? Be patient.

You have many options. What if daycare won't take him? He cannot eat that.  His immune system is compromised.  How can I best support his development? Think outside the box and ask many questions.  Find people you trust and reach out to them.

Today you met the fork in the road.  This is too hard.  I cannot do this.  I did not sign up for this.  It is not fair.  I wish..... Look for and declare the positive; hold on tight and never let go.

Sincerely,
Ilisa

*Dedicated to my neighbor who just joined us along this journey.  I am so excited for your family and to be able to do this together.  Our boys have a future together!  That brings joy to my heart.  




Saturday, March 10, 2012

Blessings Come Through Tears

I truly and honestly believe that the human potential for growth and change is at its highest when we, ironically, feel at our lowest.
PhotobucketPhotobucket
(I'm not sure about this.)
It is in those bowels, at the deepest, most vulnerable times of our life we discover the golden-nuggets of our soul; pieces of who we are.    
Photobucket
(I love this little face and I wish I could stroke that fuzz again!)
I have a heavy heart today.  I am heart broken over how hurt(ful) humans can be.  How we can go around, only accepting other people if they meet some invisible set of standards.  Yet we are only showing how we could not possibly meet God, in His place of dwelling, if it were not for the sacrifice of His only Son.  
Photobucket
We are ugly people.  And I say this with humility on my heart.  
Photobucket
Every day I work to squash the negative messages of the devil.  How I could be a happier and overall better person if I had broken relationships, no love, loads of material items, and wanted less for other people.  Oh how I must deserve much more!  In all honesty, it is a tough battle to fight, and I loose many times over. 
Photobucket
Those are messages of the devil.  Remember, the devil does not look out for our best interests.  Instead, God patiently reminds us He has one guiding light: Himself!  Remember simplicity brings about peace and I cannot think of anything more simple than God.  
Photobucket
Last winter I was out for a jog and had a great time thinking through some things.  I admit it wasn't until that run when I realized a sin is a sin because it does not keep God at the center of our thoughts and actions.  
Photobucket
God does not say one sin is worse than another.  A sin is a sin and the root of it is the same.  That is why they are equal.  I finally understood that.  Therefore, in understanding that, I know that my sins are no less offensive than those of a serial murderer. 

My best advice, for myself and others, is to check out our thoughts and actions.   Do they promote love and relationships or selfishness and materialism?   Do they honor God or the devil?

Wednesday, March 7, 2012

reality ride

Reality reminds me of the stages of grief:  denial, anger, bargaining, depression, and acceptance. Photobucket
After an awesome day focused on some future goals that will require monetary investment (I will get to another time) I was stricken with the above feelings due to a bill that arrived in the mail today.  As I rocked with my finally-nursing-again Calvin, I thought about how I momentarily thought "this is not right, no way could it be that much, we paid some of that already" (denial) and quickly went to feeling bitter about the fact that Joe and I want to move forward with some new ideas and we "of course" get smacked with another bill (anger), to "lets check and see if we paid some of that because I'm sure we did" (bargaining), to "well, I guess we should give up on anything extra" (depression), and finally to "pay it, be done with that, and figure out some other solutions to this problem" (acceptance).

I find myself getting older and therefore much more experienced in the realm of grief.  From bills as mentioned above, to finding out my unborn child would have a disability and also need open heart surgery.

I KNOW the more we practice, the better equipped we are to handle challenges. PhotobucketPhotobucketPhotobucket
A few of us here are very excited for Evan to play flag football this weekend.  My brothers, I have four of them, did not play football.  One of them ran in Cross Country and Track and I think that about covers it.  They liked hunting, video games, nun-chucks, you name it.  Yes, really, they made nun-chucks and we played "Teenage Mutan Ninja Turtles".  Talk about safety!  I cannot quite figure out if we had to hide them or if my mom thought "let them learn through failure, and pain"-a motto I adhere to.  All joking aside, failure creates a strong learning curve, as so does pain!  Of course not negligible pain, but a fall or a dip in some cold water pain (see photos below).

I digress.  Evan will learn reality when he plays his 5 rounds of flag football with other Kindergarteners. He may in fact experience some grief.  My parenting philosophy (wisdom) is to let the kids fail now and then.  This is when they learn.  Just as I am learning.

Trials and Tribulations Gallery:
PhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucketPhotobucket