World Down Syndrome Day 3/21/13

March 21st is World Down Syndrome Day.  It’s a day to celebrate everyone who has been blessed by an extra chromosome, and we will hold our sweet Matthew extra close today (and probably give him ice cream!).

However, I’m afraid my heart is heavy tonight as I post this, after reading two more cases of abuse this week – one in a classroom, and one in a theater, with the latter resulting in the death of the victim, Robert Saylor.  These cases break my heart.  They are not the first, nor will they be the last.  There was Bede Vanderhorst, a 16yo who was not allowed to sit in First Class on an airline, even though he had a first class ticket. And little 7 year old Angie who was suffocated by her own teachers!  Then you have the state of Florida warehousing children with Down syndrome.  And, perhaps worst of all, their own mother’s womb is still the most dangerous place in the world for children with Down syndrome.

And yet, 3/21 is a day set aside to let the world know that people with Down syndrome are, indeed, special.  Not “special” in the way the word has come to be used as an insult, but rather truly precious, valued and loved individuals.  Robert Saylor’s mother said in one of her interviews that abuse is only a symptom of a greater disease – of people viewing our children as something of a lesser being.  it’s time to move beyond “awareness,” and onto acceptance.  We need the world to accept the full humanity of our children with Down syndrome.

And so, it is fitting that the IDSC has chosen “Who I Am” for the theme for this year’s video.  Let’s show the world who we are!

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Works for Me: Protecting the Kitchen Table

Our Kitchen Table

For us, it is so much more than a place to eat.  It is the only table, so it is the everything table!

So, when it was finally time to replace our old-but-who-cares-what-happens-to-it table with a nicer piece of furniture, we decided to protect it as much as possible.

After all, it’s an art studio,IMG_5408

It’s a baking and craft center,IMG_6321

It’s a school desk,IMG_5526

And, perhaps the messiest (but most fun) of all:  It’s a science lab!IMG_6507

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I simply went to our local fabric store, and bought a sheet of heavy-duty vinyl big enough to cover the table.  It protects from spills, paints, pens, markers, and even Matthew’s fork and Jesse’s attempts to cut his food himself!  It cleans up with a dishcloth, or Windex and a paper towel if you really want it to look nice.  For special occasions, I can put decorations, place mats, or a table runner under the vinyl, and they stay looking nice, too!

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When you have company, it rolls up nicely and tucks away in a closet.  Or, if you’re like us and most of your company has a passel of kids as well, it just stays on the table year-round.

For the especially messy projects, I still throw a dollar-store tablecloth over it, just to make clean-up even easier.  And yes, my kids paint wearing only their “wunderwear.”  IMG_6438

It works for me!

Annual Cardiology Check-Up 2013

This week, Matthew saw his cardiologists for his annual EKG, Echo, and consult.

The issues they check on are these:

-When the hole between his ventricles healed, it left a pin-hole opening that the surgeons decided NOT to fix.  The part that healed does not look smooth and “normal,” but rather rough, like scar tissue.  They don’t anticipate this will cause any problems, and both of these issues have been not changed over the past 4 years.  The only new recommendation this year was to give him antibiotics prior to any dental work, to avoid bacteria clinging to those rough areas.

-When the surgeons fixed the valves in the middle of his heart, they could not do a perfect job.  His mitral valve is leaky, and he lives with “mild to moderate” mitral regurgitation.  This, also, has not changed over the past 4 years.  Last year, however, they noticed an area of his mitral valve that was stiff and rigid, which if it progressed would eventually lead to the need for a valve replacement.  This year, they did not see any stiffness!  Hooray!

Overall, they said his heart looks great!  His heart, along with the valves and all the repairs seems to be growing with him.  There is still no need for any long-term medication.  Eventually, he may be on a low dose of a diuretic, just to preserve his valve function for as long as possible.

We continue to be amazed at the way God has healed, and continues to care for, this little guy’s heart.  God must have big plans for you, my Matthew!

So, now that that is over with … we can move on to the things that are really important:

GONZAGA IS NUMBER ONE!

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GO ZAGS!

Brown Doggie Update

Thank you to everyone who expressed concern about Jesse and his Brown Doggie.  I am happy to report that he is o.k., thanks to a very kind and thoughtful big brother.

Micah heard me worrying about taking Brown Doggie on vacation with us, and asked if he could help by telling Jesse a made-up story.  He was a little worried about telling a story that was not true, but we reassured him that a pretend story about a pretend/stuffed animal would be o.k., just like a story book or bed-time story.

So, on night 4 of Jesse going to bed “all alone,” Micah told him a story that went something like this:

Once upon a time, in a kingdom far, far away, there was a boy named Jesse who had a very special brown doggie.  But one day, an evil witch put a spell on Brown Doggie, and all of Jesse’s other pets, too.  The spell made the animals fall into a deep, deep sleep.  Jesse thought his pets were dead, but they were just sleeping from the spell.  Jesse was very sad.  Then, Jesse got some special magic medicine to break the spell.  When he gave the animals the medicine, they all woke up and were as good as new!  Brown Doggie was so happy to see Jesse that he licked and licked his face, and Jesse was so happy to see Brown Doggie that he snuggled him all night long.  And, they lived happily ever after.

Then, we gave the animals medicine, and I had Brown Doggie bark and lick Jesse’s face.  The little guy grinned and squealed and hugged his Brown Doggie tight.  And, now things are back to normal.  Brown Doggie is on vacation with us, as real as ever.  Just this morning, Kaylie got in trouble for pulling on his fur and hurting him.

We are having a wonderful time at Great Wolf Lodge, and have met some really neat families through the IDSC.  I am so grateful for the amazing community we have!