Thoughts on Down syndrome... and John Michael

I love this picture. John Michael is going to truly be one great brother to his new baby brother, who is about to make his grand entrance into the world next week (or the next...) I can't say enough how much John Michael, in his 2 1/2 years, has changed me (and our whole family, school and church community) for the better. He has opened my heart and mind to regard everyone, not just those whom society views as "perfect", as truly gifts from God. It's not that I didn't believe it before. I truly do believe all life is a gift from God, from conception to natural death. However, I didn't act like it. I felt uncomfortable around people who didn't fit the "norm" and would choose to avoid them and look away. I prided myself on the fact that my first 3 children are bright and dare I say... attractive to society's standards... Then, wham-o, I turn 40 and have a child that 90% + women will choose to abort because they're not "perfect". Well, I didn't know I would be so blessed! I didn't know when I heard those distressing words, "It looks like your baby has Down syndrome," that it would change us, and those around us, in a positive way. I never imagined the tears I'd shed and the pleas I'd made with God to take away John Michael's Down syndrome, would instead bring me an amazing local group of friends who also have a child (or two) with Ds. And that I would connect to hundreds of other parents through blogging, facebook and the NDSC Convention. All because we're linked to an extra chromosome through our children. Simply amazing.

I know it won't always be peaches and cream for us. People do stare at us and I used to wonder what they were thinking. I'd almost obsess over whether they were looking down at us or feeling sorry for us, etc. Now I just smile and let them think what they will and not care. The smiles and waves John Michael gets when we're out and about warm my heart, so I do believe that most people truly think he's cute and love to get a smile or wave back from him. If you're lucky, he might even "knuckle you" and say "doooooo" for Dude while doing it. At church last week, another mom held out her arms for him and before I knew it, there was John Michael going through the Communion line in the arms of another mom who just adores him. As I said, it won't always be that way. There are plenty of people who don't think he should have been born; but fortunately, I don't have to deal with them at this point.

After my OB appointment this morning, I was driving down a busy street and saw two young men with Down syndrome approaching the bus stop. They could've been twins, brothers close in age, or just best buddies who really looked a lot alike. I stopped at the light and couldn't help but stare, but in a good way. I felt a smile stretch across my face, the first all morning for me, and I watched as they playfully wrestled at the stop. I know people with Ds aren't happy all the time and have a wide range of emotions. Of course they do! But in my observation of adults with Ds in public, I see more joy than anything else. The light turned green and I continued to watch them in my rear view mirror until they were out of sight. There was something sweet and childlike about them and I pray that John Michael will continue to put a smile on peoples' faces as he gets older and is "less cute". I do wonder... will people stare in a good way and smile? Will they stare and have unkind thoughts? Or will they turn their heads away and not want to look because they, like I used to be, were too uncomfortable? Time will tell. I hope they stare in a good way and that a smile will stretch across their face, too, like it did mine this morning.

Wordless Wednesday -- Happy All the Time?

Anna took these photos of John Michael last week before he came down with a sinus infection.


He's such a climber.

I LOVE this next one... he looks like a supermodel to me  :-)

And just in case you think John Michael (or all kids with Down syndrome) is happy all the time, think again...

Proof that...no, he's not always happy.  But thank goodness he usually is...

A Gift for Sheridan's Heart... (Surgery)

Four of us moms got together earlier this evening to present Lisa Lindsey (Sheridan's mom) a very special gift to offer some comfort to Sheridan (below) when he has his heart surgery next Tuesday.   You can read a detailed account of what the doctors will be doing at Lisa's blog, Genetically Enhanced.

This gorgeous quilt, in Sheridan's favorite colors, was lovingly made by Sheree's mom (THANK YOU!).   In the top left corner of the quilt are Gabby's hands; top right, Joaquin's feet; bottom left, John Michael's feet, and bottom right, Gracie's hands... These are Sheridan's closest buddies that he's had for about a year now and they can't wait until his heart is all fixed so they can play together again.

 

Here's a darling poem, composed by Sheree (Gabby's mom) with some help from Jennifer (Joaquin's mom) and Jonna (Gracie's mom) that was given to Lisa along with the quilt...

Sheridan,

This is a quilt we hope you'll hold dear.

For when it's around you, you'll know we are near.

Four tiny hands and four tiny feet

Helped make this quilt so special and sweet.

You've been strong and resilient right from the start

Which is why you'll heal fast when they fix your sweet heart.

So please don't be scared, there's nothing to fear

There's something we wish to make perfectly clear:

We love you, dear Sheridan.  You are our best friend.

We'll be ready to play when your heart's on the mend.

With Love,

John Michael, Joaquin, Gabby, and Gracie

And if you would be so kind as to keep Sheridan and his parents, Lisa and Gary, in your thoughts and prayers during this stressful time, I know they would be grateful!  We love you, Sheridan! 

Wordless Wednesday -- "Dutch" Dominoes

John Michael (2 1/2) loves to stack anything and everything.  Here, he discovered the fine art of stacking dominoes...

AND knocking them down again.

Even his cheering squad (his great aunt Bettie (L) and great grandmother "Granny" from Holland (R)) can't help but get in on the fun.

John Michael, shushing the neighbor dog (with his great uncle Piet from Holland).

Major Milestones... an update

First, I want to apologize for not posting more often lately. We've been crazy-busy around here, so my blog has taken a slight backseat.

John Michael, officially 2 1/2 on the 14th, has been very busy and keeping up with him is nearly impossible.

He has had some developmental growth spurts and a language explosion that are very exciting. I've been keeping a running tab on his new words. We also felt that, with his new baby brother coming at the beginning of June, maybe we could get him in a toddler bed to avoid having two cribs.

Here's John Michael helping to put his IKEA toddler bed together yesterday.

This is a heavy tool and he got the bit into the metal hole a few times. He could actually turn on the smaller Black and Decker battery-op screwdriver (not shown) and make it turn.

So, we got the bed all set up... moved his crib for the baby into the girls' room, put on his fresh, new bedding and Voila! a happy toddler boy.

BUT!   It didn't last for more than a few minutes. His newfound freedom was waaaayyyy too much for him to handle. He also couldn't settle into bed last night, so guess where the little stinker slept? In the girls' room, in his crib.  I put him down for nap (already asleep from a trip to Target) in his toddler bed today... not sure how long that'll last...

So on to language...

I am so proud of this guy!  Over the past 6 weeks or so, he has been making a greater effort to say or repeat words back to us.  His speech therapist is working on getting two syllables of different sounds out of him, like "Daddy" rather than "Da-da".  Well, he has "Daddy" down pat. 

Here's a list of words he can say...

baby (bay beh + sign), Binky (bee beh),  ball, bell, bowl, in, out, on, off, up, down (dow), moon (moo), dog (daw), juice, blue (baloo), block (blah), bubble (sounds just like bubble), car (kah + sign), hi, (hiya), bye-bye (with waving), please (pees + sign), eat (et), open (ben or beh + sign), more (moh), signs "all done", no (says no-no or shakes head), nods head for yes, Daddy, Mama, Papa, water (wah wah), shoe (show + sign), cracker (cowdow + sign), love (uv + sign), ice, bed (beh), signs hot, stop, says "do" for go, and signs "want" and "milk".  For flower, he sniffs his nose and when he has to cough, he covers his mouth.  He says "shhh" with his finger to his mouth when the neighbor barks (which is often!)  He can say a close approximation to his siblings' names as well.  There are so many more things, but this is what I managed to write down in case I had a brain freeze (which I do!) 

He also has some cute expressions that he uses when he's playing.  Every time he gets a Duplo Lego to stick, he says "yay".  He also says "wow" when he hears us saying it.

At mealtime and at bedtime, we say family prayers.  He tries to make a sign of the cross and now folds his hands and bows his head.  At the "Amen", he will try to make a sign of the cross again.  He is the king of mimicking.  He will dance, spin, and march for Greta. 

Last week, I tossed a small lightweight rubber ball to him and told him to catch.  If I toss it carefully, he will catch the ball 6 out of 10 times.  Keep in mind, I'm only about 3 feet away at this point, but he's "catching on", so to speak...

Finally, he is beginning to match animal puzzle pieces and is getting his shapes into a shape sorter with more ease.  The easiest shapes are circle and star.  Square is next, followed by triangle, which often takes a couple tries.  For the puzzles, he actually looks at the animal on the puzzle pieces and matches the image on the board.  He then turns the piece so it will fit.

He is self-feeding with utensils most of the time and can drink (assisted) from an open cup.  He favors a straw and can even feed himself Cheerios with milk using a toddler spoon.  His diet is limited right now, because he's picky, but that doesn't stop us from trying new things.  If I call something "meat", he'll usually open his mouth to try it.  Funny boy...

Very exciting stuff right now.  Sometimes his new words are spontaneous, which is even more exciting!  It means he understands the concept of saying a word to get what he wants or to show me he sees something.  He's also quick to point and grunt, which can frustrate both of us at times, but I'll take what I can get for now.

Can you tell... I LOVE this boy!!!
 

Sound of Music (Anna's turn) and Dutch family visiting

Our family life has been very busy lately, which explains why I've barely even gotten around to posting photos. Busy is really an understatement. My Outlook calendar is running on overtime and if it weren't for Outlook, I don't think I'd remember half the places I need to be.



This past month, John Michael has had an explosion in speech and communication.  I've compiled a list of words and word approximations, and will post an update in the next few days. For now, here are some family photos.  Above, big sis, Anna, with John Michael. This is his "show me your teeth" smile.

John Michael and Granny (great-grandmother) from Holland after Mass. I was pregnant with John Michael the last time she came to visit, so it's nice for her to see how wonderful this little guy is in person.

Proud great-grandmother moment -- her eldest great-grandson, Nicolas, as altar server.

Big sis, Greta, and John Michael give the best hugs!

John Michael taking time out to smell the flowers with his great-uncle Piet from Holland.

Granny and John Michael at one of Nic's volleyball games.

And finally, some photos of Anna as Louisa in various scenes from The Sound of Music last week.

The Goatherd song

The von Trapp children singing "So Long, Farewell" to the party-goers.

The children singing for "Uncle" Max before Maria returns...

Nicolas as Rolf at the Festival

Festival scene where the von Trapp children, Maria and the Captain sing their farewells and ultimately make their escape over the hills to Switzerland via the Abbey.