Thursday, June 21, 2012

Week Two Of Summer Vacation

Home with all the boys for 2 full weeks---- what a hoot!

When I said I was really looking forward to this summer most people looked at me like I was nuts---Ummmm... We did not travel half way around the world and invest thousands of dollars only to ship our new kids off to day camp--- This is going to be a great time to work on skills and to settle in and get to know each other! Family time!!

The bad news is that little Deyan had to go back to the hospital as the "nails" used to hold his broken femur in place (they do this now rather than the huge spica cast) have popped through his skin and become infected--another surgery tomorrow...booo

Huge thanks to Emily, James and Marie for stepping up to help while mom is with the little guy---

So--- what does a summer day look like with 5 boys (ages 6-22) with down syndrome?

6:30am Rise and Shine! Changed, dressed and down to the living room for free-time while dad makes breakfast (Jake and Marty need special attention as they are both self-aggressive)

7:15am  Breakfast-- Cream of Wheat with eggs added for extra protein. toss in a can of peaches and puree!

7:45am  Jake and Papa take big brother James to swim team practice (Jake is now big enough to sit in the front seat and LOVES to ride home up front)

8:25am  Leave with the crew for Daily Mass

9:00am  Mass at St Lawrence in Price Hill---- it is amazing to watch the boys at Mass--- attentive, prayerful and so calm.

9:30am  Drive home---- maybe hit McDrive if we were not able to get the big kids fed before we departed Plus Jake LOVES his "moomie"-- strawberry banana smoothie.

9:50am Pick up James from swim team and head home

10:00am  Jake is ready for his morning nap--- Marty is ready for a swing.. This is where we want to add an activity time--- but that has not worked out yet

11:30am  Lunch! peanut butter and banana sandwich (pureed) for the little guys-- Sandwich or salad for the big fellows

12:30pm  Pool Time--- Everyone's favorite time of day--- I never thought Marty would like the pool--- he is so afraid of everything. It does take him longer to be willing to try things, but after a couple of weeks he is jumping in to us without holding on, going under, and floating on his belly (with some help)

2pm or so  back home for chill time (or maybe nap time for the little guys)-- this is another slot we have pegged for skill development--- hopefully next week

4pm  Dinner for little guys--- soup or stew pureed

4:30 Dinner for Big Kids

5:00 Chill time/Walks/free play

6:00  Little guys are about ready for bed--- change diapers, evening snack

6:30-7 bedtime--songs,prayers, stories

7:00  Hopefully dinner for grownups-- Wheel and Jeopardy for all who are awake

8:00  Quiet time for big kids--- Books, music, video

9:00 Bedtime for Big guys

Both Mary and I are lucky to work from home---- I have to be in the studio from 11:45a-12:25 M-F and back to work at 8pm--- Mary has had a tougher time locking in her work hours with all the medical stuff going on--- but I'm sure by the end of summer we will finally get it nailed down :-)

We will try to get pool pictures to post (weather permitting) tomorrow!

Stay well and happy Summer!



Wednesday, June 6, 2012

This Must Stop

re-post from Shelly's blog

May God hold you in His arms and give you the eternal comfort you never knew on earth--- Please tell Jordan we love him

In Loving MemoryLynette2000-2012

She never learned to walk. Her days were spent standing looking over the side of a crib. She never learned to talk, but was said to smile and laugh when someone paid attention to her. She never grew beyond the size of an average 3 yr old, even though she was 11. She liked to play with toys, though I wonder how often she was actually given toys in her crib? She spent her entire life never knowing the love of a family. She died alone in a “specialized institution”.

Today, she’ll be taken off the adoption registry in her birth country. She’ll be moved to the “no longer available” section of our files and “died an orphan” is what I will write beside her name so that every time I open that file, I will remember her.

She died alone while the world sends the message every single day that “those kids” aren’t even worthy of life.
She died alone while governments all over the world send the message that “those kids” are too expensive to raise/too expensive to provide government health care for/can’t contribute as “valuable members of society”.
She died alone while school districts all over the world send the message to parents that “those kids” can’t/shouldn’t be educated causing parents to become exhausted in the fight.
She died alone while “those kids” are born every single day all over the world and parents are told to sign the papers and send them away because they will be a burden.
She died alone because we live in a sin filled world where people would rather believe that life is “all about self” and doing what is easy and comfortable.
She died alone because Christians make excuses for why they “weren’t called for that” or why only “special people” can parent “those kids”.

Her’s was not a happy ending. Her reality is that of THOUSANDS of orphans, who lived and died without anyone ever acknowledging that it didn’t have to be.

Today, I am sad and I am angry.
But, I will remember.

“We learned that orphans are easier to ignore before you know their names. They are easier to ignore before you see their faces. It is easier to pretend they’re not real before you hold them in your arms. But once you do, everything changes.” –David Platt

Her name was Tsveti.