Sunday, October 25, 2009

Down Syndrome Creed
My face may be different
But my feelings the same
I laugh and I cry
I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I am no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It comes from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

Wednesday, October 21, 2009

Anyone else sick of Down syndrome?

October is Down syndrome awareness month, and while I get the need to advocate, I'm kind of over it. I decided not to do the 31 for 21 challenge because there is no way I can blog that much, but I have been doing daily Ds facts on facebook. I think all my friends have hidden me for the month and I don't blame them. I live with Down syndrome and even I don't feel the need to know every little Ds fact known to mankind!

The thing is, Down syndrome is just a tiny part of life. I like it that way. It's part of what makes Eon, Eon, but it's not who he is. It doesn't define us as a family either. We're the Lakes. Sometimes we're the family with "all those kids", but Ds only plays a minor part in the drama that is our life.

I kind of feel like bringing this focus on Down syndrome is good, but I wonder if we're not also alienating those around us who can't relate.

In other news, Eon uses his first sign "all done" daily when he's had his fill of whatever babyfood dujour he's done with. We made such a fuss the first time he did it spontaneously, that I sometimes wonder if he rushes through his food so he can do it again! It's great to have so many cheerleaders in the family.

He dropped the ball today. Literally. His OT was here and he dropped his ball. He thought it was so much fun that he did it over and over again. She was so excited that he was doing it on purpose. Cracked me up! When the other kids acquired this little skill, I was annoyed. With him, I'm elated! I love to celebrate and he's teaching us to do it for all of our little abilities.

Thursday, October 15, 2009

Wordless Thursday?

I'm really, really bad about posting pics. Meant to do this yesterday, but life got in the way. Buddy Walk 2009 in Indianapolis was a blast! Here are the pics to prove it!

Thursday, October 8, 2009

The Dad and Down syndrome

My husband, Shawn, is the best! We have been married for sixteen years and have six children aged 12, 9, 5, 4, 2, and 8mos., three girls first and then three boys. He has welcomed every child with open arms and Eon is no exception.

When I was pregnant and told that our baby had a 5% chance of having Down syndrome, Shawn took it in stride and said we could deal with whatever comes. When, however, a mere minute after birth we were confronted with the reality of Ds, we were both a little taken aback. All the color drained from Shawn's face and he appeared completely stunned. While I was instinctively trying to remain positive so that no one would issue the dreaded "I'm sorry", Shawn just stood there looking shell-shocked. I had to direct him to take pictures. The air had left the room and he moved rather woodenly to complete the task.

I recovered quickly. As soon as they finally let me hold our boy, I knew it was going to be ok. I was instantly smitten! While I nursed our little peanut, the nurses finished their clean-up, filed out, and we were left alone. Neither of us spoke. I attempted conversation, but everything fell flat, so I remained silent...and prayed. I knew then that if Shawn would just hold him, he would recognize the truth - that he was a gift, that we would be fine, that we could do this.

So, after about 20 minutes, I asked him to hold Eon while I buttoned up. He complied out of habit, but no real desire. He moved across the room and sat in a chair, and stared out the window. I watched him and prayed some more. Finally, I saw him looking at our baby. Pretty soon he was whispering things to him. I'll probably never know what they discussed, but after awhile, he looked at me with renewed strength and asked, "Ok. So what are we dealing with here?" Relieved, I shared everything I thought I knew about Down syndrome. When I completed the list, he grinned and asked, "So, one day at a time?" Exactly.

While I have waffled at times in my resolve to embrace Down syndrome, Shawn has never looked back. He is proud of his third son for everything he does and everything he is. I have read that fathers have a particularly tough time accepting this diagnosis for their sons. I am grateful that my husband is not one of them. I worry about Eon's development, health, future, etc. and Shawn just enjoys him. I share my concerns that I am not offering enough stimulation or doing enough therapy, and Shawn doesn't hear me...he's too busy exchanging belly laughs with his boy. He fully embraces all that makes up Eon, including his extra chromosome. He truly takes our life with him "one day at a time." I want to be more like him.

Thursday, October 1, 2009

Next step?

Eon is doing great in his gross motor development. I am so proud of him. I think a huge part of his success is his amazingly positive and knowledgable PT, Jill! She is a gem! She is his biggest cheer leader and I joke that he could be laying in the corner like a blob and she would think he was super. :) I once brought up my fear that he would "butt scoot" instead of crawl and she looked at me all aghast and exclaimed, "I have never had a child butt scoot!" I guess we don't need to worry about that.

As he grows and matures, I am feeling like it's all happening too fast! Which, of course, is silly because the reality is that he's hitting milestones in slow motion compared to his typical peers. (I guess....I don't really pay attention to the "norms"). But, I worry that I'm behind.

I want to research vitamin therapies and supplements. I intended to have already decided whether to get the "Love and Learning" or the "Your Baby Can Read" programs and still haven't spent any time on either of them. I've only purchased the first "Baby Signing Times" dvd and only know about 4 signs from it. The kids know all of them, of course. And, I read a thread today on the use of flashcards on Babycenter's Ds board, and I have no idea what they're talking about! But, it sure sounded like I should.

Ack! I can't keep up! And he's moving slowly. I do this every once in awhile. I panic thinking I am not providing all he needs. Then, I realize that he's doing great and being "one of the bunch" is something that he needs and we have that down pat. Balance is key and I don't think I've had that since baby number two!

In other news, he learned to drink from a straw cup, yesterday. How cool is that?!