Friday, June 25, 2010

"Seeing" Down syndrome...

When did you first "see" Down syndrome in your child?
At birth? Did you know before your child was born that he or she had Ds? Did it happen a few weeks or months later?

Soon after John Michael was born and taken away to the NICU, Doug and I were told that it looked like he had Down syndrome.

As if the news itself wasn't like being hit in the stomach with a bat and my heart pierced with an arrow, we wondered, "How can they tell? What do they see?" What physical features were obvious to them that we didn't see?

I found myself picking apart John Michael body part by body part, looking for Down syndrome in his ears, his eyes, the bridge of his nose, the shape of his head and neck. I could see he had short fingers and chubby, square hands, and short toes with a sandal gap and Simeon crease underneath. I noticed he didn't cry vigorously and was rather flaccid. Internally, the doctors told us about the 3 holes in his heart (PDAs) that may or may not close on their own. This, they said, was also a marker of Down syndrome.

It was all so much to take in.

We looked, we stared, we parsed him into "parts" and rationalized away the similarities.

To us, John Michael didn't look any different than any of our 3 older children. He was ours. We loved him.
In all honesty, the next couple weeks were fraught with sadness and fear. Every pre-conceived notion I'd had about Down syndrome popped into my head. Even the word "Mongoloid" came from the depths of my soul. I hadn't heard the word in at least 30 years, and yet it surfaced. I didn't know what it meant, I only knew that people used to say that for Ds. My thoughts turned to a deep sadness predicting that at age 80, we would still have a 40 year old son living with us. We'd never have our dream of traveling after raising our children. We'd always be "burdened" by having a child living with us... an adult child that would need our constant care and supervision.

Those early weeks, I pleaded with God to please take away the Down syndrome. I prayed for a miracle. I prayed hard. I apologized to God for being angry and not being positive during the early months of my pregnancy when I was still in shock that I'd have a baby at 40.

I tried to bargain with God, but no matter how hard I begged, John Michael didn't change. But God did give me a miracle. He changed me.

And I thank God to this day for that gift. A change of heart. Not long after, I was able to see John Michael as a gift to me, to our family, to our community. I still see it every day. That's what I see, not a diagnosis, but a blessing.

I can say now that when I look back at photos of John Michael as a baby, I can "see" his Down syndrome. I really didn't see it then. I often wondered if strangers in the store could "see" it. Sometimes I felt compelled to point it out. Strange, the things we do when we aren't yet comfortable in our own skin or in the skin our child is given. Today, I can boldly say, "Yes, he has Down syndrome, and he's an awesome little guy!" And I mean every bit of it. I can "see" it, but it really doesn't mean anything... John Michael is so much like the rest of my kids, and I pray that the rest of the world won't judge him based on his appearance. If they let him, John Michael will shine for all the world to see that Ds isn't something to fear. It's just a little part of what makes him unique, and I thank God for him every day.

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Monday, June 21, 2010

Random photos from Father's Day and 1st Day of Summer

Me and Luke (17 days old) this morning, the official first day of summer. Sacramento will hit 90 degrees today, which seems appropriate, especially after the unusually cooler weather we've been having.

Luke's message for today... "be happy."

Nicolas enjoyed holding the little munchkin yesterday (Father's Day).

John Michael and Greta (with Mitzi) are enjoying a juicy plum out front with Daddy on Father's Day.

I still need to get a photo of all the kids together and another of just John Michael with Luke.  John Michael is doing "OK" with the baby, but usually tries to sneak in a pinch after his gentle touches, so it's hard to get a good shot right now.  Otherwise, my funny boy (JM) is doing quite well and enjoying the day with his grandmother today.

I hope your Father's Day was wonderful and that the start of summer will be filled with lots of sunshine and fun.
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Wednesday, June 16, 2010

Holding Sofia!!!

Last night at the airport, I got the biggest treat! I got to watch little Sofia, a FORMER orphan from eastern Europe, arrive with her new Mommy and Daddy and meet her new brothers.  It's been a 6 month journey since Sofia was first placed in the hearts of Jennifer and Hector.   And after much anticipation, we welcome our first adopted baby with Down syndrome into our Ds family. 

Look at her smiling.  I think Sofia likes her Auntie Monica already.  I couldn't get over how solid and buttery soft this little princess is. She's about 22 pounds of pure cuteness.  After a 20 hour travel, Miss Sofia was all smiles, waving to all of us and letting each one of us "aunties" hold her.  My heart melted the moment I saw her and I'm so smitten by her precious smile already.

My photos are all a little out of focus as things were happening so fast that I couldn't quite capture everything quick enough. Lisa Lindsey at Genetically Enhanced took some great homecoming photos and video, too. Here is Mommy Jennifer with Sofia just moments after they got off the plane. Sofia really had her game-face on and if this is any indication of how she'll be with her new family, they are going to have a blast with her.

The new, complete Sanchez family of six!
I love how comfortable Sofia already seemed after having met her new brothers only minutes before. The most precious moment was seeing the boys kiss Sofia and especially Joaquin who, on several occasions, gave his new sister a precious kiss. If you don't know this family, check them out at Saving Sofia.

Mission Accomplished!

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Monday, June 14, 2010

(Cheap) Summer Fun...

Summer has hit our region. Yesterday was our first mid-90's hot day and the kids were melting.
It's funny, but when you don't have a built-in swimming pool, the kids get creative.
Last weekend, the kids set up a homemade "Slip n Slide" on the front yard lawn that has a slight slope with tarps and a water hose running.  (Yes, I know it's wasteful... so we didn't let them do it for very long...) It also wasn't very smooth, so this didn't last very long. 
During the week, they begged to run through the sprinklers to cool off. John Michael wasn't a fan of spraying water hitting him at first, but with a little help from Greta and a bucket, he happily joined in the fun.
Yesterday, the kids reminded us that we still had an old plastic pool on the side of the house from last year. So they pulled it out, rinsed it, and filled it. John Michael didn't need any coaxing to get in this time. He kept saying "Baaah" (bath) and "Bubbles". And, yes, that bucket came in handy for dowsing big brother, Nic.
I don't know about you, but I don't think you have to spend lots of money to get some smiles like these. Just some good old-fashioned backyard fun.  What do you do for (cheap) fun?

And in case you wondering... my blog pause is finished. I just can't stay away for too long!
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Saturday, June 12, 2010

John Michael and Luke...

Peek-a-boo! Guess who?

John Michael, that's who!

John Michael... can you say "cheese?"
Poor In-n-Out hat didn't last very long, did it?

John Michael hasn't had much chance to be a big brother yet, since Luke is only 8 days old. It's been interesting to watch him, though. When Luke cries (the boy has some pteradactyl pipes!), John Michael comes over and signs "cry." He loves to feel Luke's hair and is very gentle with him... at first. But, a few times John Michael has patted Luke hard on the head, pinched his foot, or pulled his fingers. The whole time he does it, he looks right at my face to see my reaction. I think he's testing his limits and to see what's OK, and of course, it's not!

In general though, he's curious and interested in Luke. When Luke is sleeping, John Michael has signed and spoken a combination of three words together... he'll say "Baby", sign "sleep" and put his finger to his lips and say "shhhh". That's the most signs and words he's put together at one time, which is fantastic.  Lately, John Michael has been eager to try to label things around the home or outdoors or in books without prompting... usually with a word approximation or accompanied by a sign.  It's so encouraging, especially now that our therapies are done for the summer.

As for Luke, he's more alert and wide-eyed during the day. He loves to be held (what baby doesn't!) by all his family members and does pretty well at night, with usually one slightly longer awake period around 3 or 4am (ugh!), but Daddy takes over after I feed him.

We're finding our way in this new world of 5 children. It's been said many, many times, but I find that John Michael having Down syndrome was sooooo much easier as a baby than my typically-developing babies. Less crying for sure! I even remember John Michael only pooping once a week back then. Luke's plumbing works quite well, which means a whole lotta diaper changes throughout the day and night.

My mom was here all week helping with the transition.  Mostly, she helped John Michael pass the time by walking with him, taking him to the park, playing ball with him, or whatever he wanted to do.  She also held the baby so I could get my (fat!) feet up.  It was great to have her and I always hate to say good-bye.  Monday and Tuesday this next week I'll be solo unless I can get my respite gal to help. I'm totally nervous about that because it's impossible to nurse the baby while John Michael is wandering around, getting into trouble. Yesterday, Anna found him on her top bunk crying. Thank God he didn't fall or try to climb down by himself!  We'll eventually get into a routine and a rhythm... I just hope it comes sooner rather than later!

Luke signing off for now. 
Check out this guy's long fingers, arms and legs.  Future basketball player, perhaps?

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Sunday, June 6, 2010

Welcome Baby Luke!

Yes, I'm still taking a blog break... just had to get this up  :-)

PS:  Greta is happy Luke is a blondie so she doesn't have to share her redhead status with anyone  :-)  Maybe I should change my blog name to 4 blondes and a redhead...  Nah.
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Wednesday, June 2, 2010

A Foretaste of Summer and Blog Pause...

John Michael got his first taste of running through the sprinklers this past weekend. It took him a good 15 minutes to decide he was going to get wet, but thanks to Greta, she gave him a bucket, showed him how to fill it, and that was all it took.
I can't say enough of how awesome Greta is with him. He mimics her constantly and thank goodness it's usually cute.  Because he is such a copycat, I am really hoping we can get  him into a full-inclusion or typical preschool in the late fall.  I think he would pick up bad behaviors as quickly as good ones... so hopefully he'll pick up good words, good skills, good manners, etc. 

Photo credit:  Anna Crumley

This boy is about to become a big brother.
So hard to believe my "baby" John Michael is going to have to make room for another...

Another first this year... swimming at the Club with Daddy and kick-kick-kicking.

Photo credit:  Anna Crumley

John Michael has been so sweet, kissing the baby and "talking" to him.  I wonder what life will be like with a new baby in the house...
We are taking a brief blog break.  Change is in the air... Baby Brother will be making his entrance into the world very, very soon.  The best way to keep up with us is on Facebook since I can easily post photos from my iPhone (I think!).  If we're not "facebook friends", yet, what are you waiting for?

And one last image to make you smile.  Well, at least it makes me smile!  :-)

If you're the praying type, we welcome all your prayers for a safe delivery and healthy baby, restful nights and no mommy blues...  OK, I can hope for that, right?  God bless you and we'll see you on the other side...

PS:  If you took the time to read this post and don't usually leave a comment, won't you please be so kind this once?  De-lurk and let us know you're out there  :-)

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