Tuesday, July 31, 2012

All Boxed In!

What to do with energetic kiddos on a flaming hot summer's day? The joy of boxes!

We've had plenty around from the new dishwasher (which I LOVE!) to the new carseat for Elias. The castle was a creation done with the babysitter, Stephanie Johnson. Isaac was rather observant of how she cut the cardboard and did the same to the boxes that became his and Keila's 'costumes'. They kept running into each other and the walls, giggling like crazy and yelling boo. Crazy fun kiddos!

Sunday, July 29, 2012

Muddy Mud!

A good rainfall has become so infrequent these last few years in AZ, even during hte monsoon. I love a good downpour, something I experienced alot of in Houston. It's cathartic, like a drawn out, snot gushing, wailing crying session! (Now that was a beautiful picture to paint!) Anyhow, so when rain does come, we go out and do our own rain dance which I think every child should experience.

Of course it usually ends in mud!

I had to get a shot of their 'brown socks'! We hosed them down in the back and hauled them in for a warm bath in the end. The memories make it worth it. Thanks be to the humidity, clouds and rain! And finally, thanks be to childhood!

Tuesday, July 24, 2012


I was asked the other day if it was really all that differnt having a child with Down Syndrome than one without. I thought about it and really on a day to day basis, you don't think about it. He's just my baby and a sweetie at that. Physical therapy or PT has just become part of the schedule like playdates are for Isaac and Keila. Then there are the other times where it becomes hard and very apparent. There are 3 other babies I see regularly who were all born within 10 days of Elias. And while a parent shouldn't compare their child with others, we do it anyhow and I become more aware of the challenges that face Elias.

He lacks alot of core strenght to be able to sit up and his hands aren't as coordinate. For the most part these things don't bother me too much, I know he'll get there at his own pace, but there is one thing that has given me so much heartache. For the longest time Elias didn't smile. I'd ask different therapists if smiling was delayed and they all said it wasn't, but I'd watch the days tick away and read the develpmental books and I became afraid of the worst.

There isn't much a mother needs to keep her going and there's something about the reward of a smile and a giggle that warms you to the core. I guess I was feeling really drained and began fearing the worst, that perhaps my baby wouldn't ever smile at me. Maybe he had autism in conjunction with Down Syndrome? (Kent has a nephew with it, perhaps it was genetic) would I ever be able to connect with him? He is nearly 4 months old, and I don't even know what he likes - raspberries, his favorite toy or even me?

Finally we got a PT who suggested that his facial muscles lacked tone as well and that we ought to massage and 'wake-up' the muscles there. It was then we began to see a faint glimmer of a something, as if he was just on the cusp of a tiny smile but my delight would startle him and it would all fade away.

Something happened tonight, I don't know what, but Kent was talking to him and laughing and a wide mouth grin popped out in response. We must have looked like such fools, but we did everything from peek-a-boo, to giggling hysterically to see it again and again. It was truly in response to our faces and reaction, he was there smiling because we were smiling. I cried tears of joy - which of course caused him to stop smiling immediately and furrow his brow in concern. Such a sweetie! I don't know if he will ever know how much his smile means to me. Now if only I could catch it on film!
This is the closest I can get, and he's even doing tummy time too! Course it helps that it's on Mama's tummy, but I could do this all day just to see him smile!

Monday, July 23, 2012

Celebrating Milestones

I don't think I ever really knew how hard children work to learn and grow. Perhaps it is because it seems so fun to an adult. With having Elias, I've been taught a great deal by different therapists and doctors. I can see Elias struggle to coordinate his movements as he reaches for an interesting toy. Half the time I think he shakes the toy in his grasp out of shear joy in reaching his goal. The interesting thing is that it falls out of his hand but he trys again and again. They don't get as discouraged by failure and sometimes I think it's because they find joy in the journey. Another lesson learned, perhaps if I just enjoyed the ride and didn't focus only on the end result life might hold more immediated happiness!

With all our hard work (especially Elias) he's finally holding his head up steady for long periods of time. It took him some time, but he's batting at toys and can grasp toys with his left hand. He has this fierce look of concentration as he reaches for something. It's also amusing to watch him reach with his tongue to 'taste' things. Initally he struggled to bring toys to his mouth so he'd stretch his tongue instead. On occasion he has taste-tested us and likes to knaw on my collar bone. Keila calls these baby kisses.

Keila's reached the epic milestone of being potty trained! She was able much sooner than she wanted to and need some convincing, particularly on the days she wanted to be a baby more than a big girl. She learned quickly though that babies only drink milk and that is not appealing when compared to eggs and cheese so the choice became rather clear as we started each morning. (This is what I call manipulative parenting! Whatever works, right?) She's still in diapers at night but there have been no accidents for weeks now. We had promised her to celebrate as a family with her choice of dessert. She's a girl after my own heart and we got sundays from Freddy's Frozen Custard.

Isaac was rather keen on the reward we promised Keila when she'd reached her goal. He was her best cheerleader and would faithfully report her sucesses to Kent long after she'd forgotten them herself. Here's to an encouraging brother!

Gotta get every last drop! She would have licked the bottom if her tongue could reach it!

Yeah, I think she enjoyed her treat!

We started swim lessons daily with Stephanie Martin, who is AWESOME! It was her older sister that taught me how to get over my fears of swimming so I could do a sprint triathlon. Now I'm pretty much worry free over Isaac. He has swim the lenght of their pool twice easily both on his front and back. Jumping off the diving board was a little intimdating at first but now he's a pro. He's doing so well that I'm considering having him attend the Bellair swim team next year. It would be an awesome outlet for him to help build his confidence, let alone get out some energy.

Keila's improving as well and perhaps next year when Elias is old enough, we might attempt the water park again.

Everyone is growing up so quickly and learning so much. I'm so proud of these little sweeties that I've been blessed with!

Monday, July 2, 2012

Reece's Rainbow

Ever since Elias was born, I've done a lot of research on the web, looking for resources to help us understand Down Syndrome. It's been wonderful to connect with people who know first hand some of the challenges we'll be facing and especially to know of wonderful possibilities in these children. It was through one of these sites I came to know about Reece's Rainbow, a nonprofit organization that advocates and helps with grants to adopt children with DS and other special needs.

My heart ached as I saw pictures of children all around the world listed with their differing health issues, some clearly neglected and abandoned, others who would be moved to insitutions soon if not adopted. I felt a sense of hope as I read about families in the process of adopting and needed help with the funds to bring this about. Finally I cried with joy at a few of the stories of those who had found their 'forever family'.

Annually we try to do something to 'give back' all the blessings we so richly enjoy. We try to find something meaningful for our family and something personal. The more hands on the project, the more we hope it teaches our children to see gratitude in all they have and learn to care for others around them. Reading through the differing needs of adopting families on the website has made it rather personal and as young as our children are, I hope the lessons of love and sharing will come home to them.

The other day I had all three children crying,(although with the older two I swear it sounds more like 6 children screaming!) a rarity only in that Elias is usually fairly content laying down with some toys or in his bed. I feel bad that he is carted around for grocery shopping and the activities of his siblings and that I haven't all the time to really spend with him the way I would like. When he cries and cries hard, he truly needs me. So I gathered his little body into my arms and curled up on the couch. He has a way of melting into you and will puposely tilt his head to rest on my heart. Then he gazes with an intensity that envelops with his soul. It is during these times I realize that joy is found in moments, fleeting ones that are lost if I'm too 'busy' with life. I feel so grateful that I have him and so grateful that he has me. So much of life is about connecting, people needing people and love. I wish I could give it to every one of those children with special need listed on Reece's Rainbow Since I cannot, I'll give what I can give to them and then love with all my heart my 3 children I have here now, especially my angel heart, Elias.

I adore that little face of Elias peering over Kent's shoulder at the world.