Wednesday, April 28, 2010

Monday, April 26, 2010

Prayers for other friends

http://allarepreciousinhissight.blogspot.com/2010/04/surgery-still-pending.html

and

http://anextra21.blogspot.com/2010/04/sunday-micah-update.html

Meet Julie with DS

I came across this page today:


Here is a letter this young lady, Julie, with DS wrote:


Smiles.  I love what she writes about her dad being slow to cook.  I can't wait to hear the insightful things our Jack has to say and the love he has to give.

More on Julie:

Now that you have read her letter, I think you’ll agree that Julie is a very wise and insightful person. Julie’s “Love Chromosome” is something she would like to share. “I wish everybody could have one” she says.  As you get to know Julie, you will see countless ways this love chromosome affects those around her.  Allow me to share one such example:
Julie and her mom, Barb were at the grocery store together when Julie was 5. A man entered the door wearing a dirty, wrinkled, old trench coat. He was unshaven and disheveled. His hair was so greasy that it stuck in clumps. He probably smelled too, but Barb was not going to get close enough to find out. She thought how unnecessary this was as her town had one of the best Rescue Missions in the country. “At least get some clean clothes and TAKE a shower!” she thought.
While checking out Barb took Julie out of the cart. Julie took off like a shot towards the man with both her arms outstretched. He bent down and picked Julie up as she nestled into his disgustingly dirty neck. Barb panicked thinking he would harm Julie and rushed to the man grabbing Julie back and saying (not so nicely) “THIS IS MY CHILD!”
What happened next has burned itself into Barb’s mind forever.  The man looked at her with tears rolling down his filthy cheek.  “Lady,” he said,  “I can’t tell you the last time somebody wanted to hold ME”.
You see, Barb saw a man and she judged him.  Julie saw a need and she hugged it.

Story also found here: http://thelovechromosome.com/julie



Happy Monday everyone.

Thursday, April 22, 2010

Happy 10 months and WE HAVE A TOOTH!!!

Quick post..I'll add a picture tomorrow, but Jack is 10 months old today...WOW!  And I realized last night that he is cutting his 1st tooth!  It's on the bottom in the very front.  I am thrilled.  I was absolutely gleeful last night.  Who knows why one tiny tooth makes me so happy, but it does.  It's sharp to the touch and he does not seem to be bothered by it at all.  It makes me excited to look forward to tooth fairy visits in the future when this same little tooth falls out and the excitement that will bring, and I can't wait to see his smile when this tooth fully sprouts.  I am sure it will be all jagged and next to his pink gums will be the cutest thing ever. 


So Happy 10 Months Jack!  You have a tooth!  This tooth has brought me tons of joy and hope today and nothing, not even work, will bring me down today!  WAHOO!

ok, I lied, I have to include some pictures...so here are some from the past few days...pre-tooth:
Finger feeding is always fun...perhaps that tooth has caused a sudden progression in chewing...hmm :)
All of our oral motor goodies, to wake up those cheeks, mouth and gums!
  his battle wound from 2 surgeries (duodenal atresia repair last July, and hernia repair last Friday).

"where's mom?!"  we play this game often...he loves it.
And singing funny songs about food :)

Have a great Thursday!  WE HAVE A TOOTH!!! 

Wednesday, April 21, 2010

love around my neck and harsh realities

Monday, I received my DS pendant in the mail!  I don't know why this necklace means so much to me, but it does.
When Jack was 1st diagnosed, I was so overwhelmed with emotions of fear and uncertainty.  I didn't want people to notice the DS and often wondered if they did.  Then I went through a spell of needing to talk about it and just let people know.  I would let perfect strangers know, which I think was my way of dealing with the reality of the diagnosis. Down syndrome is not our life, but it is a part of it.  It is a part of Jack's life, just like therapy is a part of life, Jack's health issues are a part of life.  People who don't have children with DS or know anyone won't understand this.  Some people will say, "who cares...its' just an extra chromosome"...and honestly, sometimes I have that feeling.  But most of the time, my husband and I are faced with the struggles and joys that extra chromosome brings.  I am not going to hide our struggles or feel awkward because we have them.  Jack is our treasure.  And this necklace represents him.  Anyone can wear a pearl or diamond necklace.  But not anyone can have a necklace like this that represents and embraces differences and a beautiful life. This necklace reminds me that while our lives are different, they are also unique and beautiful and novel. So, I proudly wear my necklace.  I sort of hope that someone will notice it and ask me about it...maybe they will have a negative view of DS and it will give me opportunity to tell them about our beautiful son.  Or maybe I will run across a woman who is contemplating abortion and I can tell her the beauties of life when you have a child with DS and maybe she will then choose life instead.  And maybe those things will never happen, but I will still wear my Jack Necklace and let it dangle close to my heart...because that is where he is always.  (necklace found here: http://www.be-jewelryandcrafts.com/dspendant.html)


This past weekend I was faced with a harsh reality.  Through a conversation with dear friends, I came to the realization that some people view Down syndrome as a random act of nature and that the reason that there aren't more people with DS in the world is because they are weaker and nature doesn't let them..."typical humans" are stronger and therefore dominate.  I was so shocked to learn this...I had no clue people actually thought/ believed this.  This is a very scientific way of viewing life and my friend was probably just playing devil's advocate, but it hurt.  I don't believe this. I believe that God formed Jack just the way he wanted him...I believe that Jack has purpose as does every human here on earth.  And while there is mourning over the loss of "normalcy", there is great celebration over the life of Jack.  People who think that individuals with DS are weaker and that is why nature doesn't allow them to "multiply" are ridiculous.  I look at all the things my Jack has gone through in the past year, not to mention all the things so many other children have gone through and find evidence of strength and valor.  Oh how I wish I could change how people view my son and other people with DS.  I wish I could make them see how lovely he is and how blessed we are to have him.  He is no freak of nature or accident.  His life was formed and created with great purpose and I don't care if people think I am crazy or not. DS is not a bad thing.  DS is not a curse.  It is hard and it brings some difficulty, but so does life in general.  After this conversation ended I gathered up my Jack, took him to his bed and thanked God for making him.  I told Jack that he was made this way and that God makes no mistakes.  Although the reality of that conversation was very hard and it took me a few days to be able to write this, I am glad I  now know how some of the world thinks. It will help me to love Jack more and better.  And the next time I am faced with this opinion, I will be ready...the shock will not paralyze me like it did then.  And I comforted with this:

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be (Psalm 139:13-16).

I know people will get freaked out now, because I just went religious on you, but I don't care.  This is what I believe...this is how my sweet Jack was made and HE has purpose.

This is a life with purpose...he is not suffering, nor is he weak:

Tuesday, April 20, 2010

quick update

Surgery went well. It only lasted around an hour and our EI Director at Jack's daycare sat with me during it while Michael had to work.  Thanks Chris.  Jack and I were able to come home on Friday and after we got home we realized that he was allergic to the pain medication, so we had to use regular Tylenol for his pain.  The 1st 24 hours were a little rough as he threw up multiple times due to the allergic reaction, but then after it was out of his system, he seemed to feel much better.  He is back to himself...being goofy and silly and moving around constantly.  We are grateful everything went as planned.  How nerve racking even the smallest procedure is when it involves your child. Since the surgery he has developed a cold, of course.  I am sure this is due to his weaker immune system and the toll that surgery takes on the body.  We are hoping the cold goes away and doesn't turn into something worse.

Thanks for you well wishes a prayers. We really appreciate it.

Thursday, April 15, 2010

Surgery Tomorrow

Jack is having surgery tomorrow to repair a hernia that resulted from his duodenal atresia repair.

Surgery starts at 7:30am Friday, April 16th.

We are praying for a smooth surgery with no complications.

I'll post an update later tomorrow.

Wednesday, April 14, 2010

Life this past week

Jack continues to work on sitting up...he is getting so close and is doing much better at prop sitting:
 He will sit like this for about 30 seconds - 1 minute and then arch his back and fall backwards.  He still loves being on his tummy and back more than sitting up.  I know once he masters this skill he will enjoy it, but for now it's not his favorite thing :)

We went to the Botanical Gardens on Sunday with our neighbors, Jamie and Eric, Eric's mom - Jeannie, and their 2 children: Lilly and Will.  It was a beautiful day.
He is Mr. Relaxed and laid back with his feet propped up and that adorable grin.
Ms. Lilly: blanket - Check, sippy cup - check, paci - check...LET'S GO!
Michael and Jack having one of their secret conversations
The tulips, which will forever remind me of our own personal trip to Holland, were beautiful and colorful and happy.  They were all throughout the park and made me smile each time I saw them.

We are working on finger play and finger food eating with Jack.  Here are some pics from playing last night:
And here is a picture from this morning...at 6:30 am as Jack just had his thyroid medicine...he is such a morning baby!
It's been a nice week and we are looking forward to the weekend. We also went to a Down Syndrome play group this past Saturday, but I forgot my camera so no pics.  Our new friends, Barrett and Brian were there with their little one, Aiden.  We had a great time and the boys enjoyed playing with all the fun toys.  It's nice to have friends walking through similar stuff and we are so grateful for them.

on a side note - Jack has surgery for his hernia this Friday. This procedure has been scheduled and rescheduled 3 times due to past illnesses.  We are looking forward to finally getting it over with, but are still nervous.  The anesthesia part is the hardest and of course, handing him over.  Please keep Jack and the surgeons in your thoughts and prayers this Friday.

Have a great week!

Wednesday, April 7, 2010

Easter and Thoughts

Well, I am not sure what to call this post, but maybe I'll figure it out as I write.  I tend to use this blog as my outlet.  I can get my frustrations, concerns, triumphs out by writing them, so I appreciate those of you who listen.


We had a great Easter.  My husband's family was in town and it was filled with great food, lots of laughter, wonderful conversation, and just loveliness.  I love my husband's family.  His dad, Steve, is an older version of my husband and when they are together it's just hilarious.  They feed off of one another and have "man-versations" while Marcia (Busia), Christa (Michael's sister) and I chat.  Marcia, Christa and I went to the park with Little Jack on Saturday and out to lunch while the men did "manly" things at our house.  We enjoyed meals with extended family on both Saturday and Sunday nights and went to a Catholic Mass on Sunday.  I have never been to a Catholic mass before, so it was quite interesting. I grew up Protestant.  Jack was great during the service.  He slept through the first part and just cuddled on my chest for the rest.  He loved looking at the beautiful art that was all around us.  And as I listened to the Easter story and sang songs that I have known my entire life, I was humbled. As I held my baby boy I felt more love and graciousness for meaning of Easter.  I won't go into a religious spill here, but let's just say, it was good to celebrate Easter and to be with my family that morning singing songs and listening to scripture, reminding us why we celebrate Easter.

Here are some pics:

Opening Easter basket from Busia (Busia means Grandma in Polish):

Handmade Easter Basket from Busia:
Opening Easter Basket from Nana (Sent from TN):
Reading with Granpa and Busia:


Hanging out with Granpa:
Playing with Aunt Christa:
More Playing with Granpa and Busia:
We hope everyone had a great Easter!  We are looking forward to hunting eggs next year!