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Movie: Seth can pull up!

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Spread the Word to End the Word

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I’ve wanted to write about this for a while now…about a year or so, I guess.  I’ve tossed words around in my head to try to figure out the best way to say it and hesitated to even approach the subject for fear of being misunderstood, labeled or categorized as “an emotional mom.”  I can’t keep it in any longer, and March 31 gave me just the thumbs up I needed to get started.  So, here goes nothing:

On March 31, across the United States, people on college campuses, in high school cafeterias and workday offices have launched the “Spread the Word to End the Word” campaign. The goal: make people stop and think about their hurtful and disparaging use of the word “retard” or “retarded.”

Spread the Word to End the Word is raising the consciousness of society about the dehumanizing and hurtful effects of the R-word and urging people to resolve to stop using it as an insult, casual or intended.
Think about it.  How many times in your life have you used this word flippantly, certainly not meaning to hurt anyone’s feelings, but just as a figure of speech….slang?  I have.  Well, I did.  It’s amazing how quickly things can change.
You see, last December, I took a test that forever changed my feeling about this word.  A quadscreen came back with high odds of my baby being born with Down Syndrome.  That rocked our world.  Things got scary and perspective shifted.  One evening, my husband and I were watching TV and the comment left my lips, “Oh, that is SO ret….”
“Wait a minute, I can’t finish that word.”  A knowing glance from him indicated that it stung him just as badly as it did me.  After all, we’d spent all week googling the words “Down Syndrome” and found an overwhelming amount of information and family testimonials and beautiful, beautiful faces.

How 'bout a little respect?

That was the moment for us.  We agreed that whether or not our baby was born with DS, we’d gotten close enough to the reality of it that we could never, ever use that word again.  Not flippantly, not in slang or jest.  Not ever.
And you know where we are today- we have a beautiful, beautiful boy who was born with Down Syndrome.  And I won’t lie to tell you that it hits me like a slap in the face each and every time I hear the R-word.  It never gets easier and it’s not one of those things we can just brush under the rug…..
So now, I stand with the Special Olympics and thousands of families, friends and really, really cool people who choose to find a new r-word…..RESPECT.  It’s amazing that in a culture that strives to be politically correct (to a fault, it seems), this hasn’t been brought to the forefront of our culture until now.
Today, all I ask is that you would take a minute to examine your words- your conversations- your thoughts.  Have you used this word?  Is it part of your vocabulary?  Have you heard someone use it?  Can you boldly, yet gently, educate the person to its negative meaning?
It’s a tough thing to do- I’ve done it with friends, acquaintances and even strangers.  Try to offer them new ways to say things.  For example, if someone is using the phrase, “That is so retarded!”– give them other words such as silly, crazy, nonsense.  With regard to individuals with challenges, rather than labeling them a “retard” or “retarded,” use the words cognitively delayed or mentally disabled.
Take the high road with me on this one.  Be bold in standing up for those who are unable to stand up for themselves, and practically incapable of anything but love.
I cannot let this one go and I vow to do it for Seth, Lauren, Grady, Stephen, Ibby, Rachel, Zachary, Jessica, Noah, Abby, Carly, Kara and countless other precious, perfectly formed little children who need us to be their voice.  If we won’t, who will?
As Colossians 4:6 says, “Let your conversation be always full of grace, seasoned with salt, so that you may know how to answer everyone.”  Wow- what a reminder to me that I have a lot of seasoning to do in my own life!

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Video: Seth crawls!!!!!!!!!!!!!!!!!!!!

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I think this is pretty amazing!

Watch the tiger crawl!

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Random Thoughts….Belated Update!

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How many times do I sit down and think, “I should really post an update…but I’m too tired and once I start writing, I won’t want to stop.”  Here I am though- Ella is up to something upstairs and Seth is sleeping.  Let’s see how much I can update you in 5 minutes:

Seth and Daddy at the heart doctor appointment

-Seth had a cardiologist appointment two weeks ago today (thus the “coming out of sedation” picture on the blog earlier).  He was born with two small holes in his heart- better known as heart murmurs- a PDA and an ASD.  (All you cardiologists out there will know what I’m talking about!)  Anyway, they gave him some “happy juice” for a sedated echo to check out the little dude’s ticker and glory to God!!!, both holes are closed and everything is working well!  We praise God for this- and give Him all the credit for healing Seffy’s heart.  The cardiologist mentioned he has one small leaky valve- the “tricuspid valve” to be exact….and that we should come back in at age five for another look.  According to him and stuff we’ve read- it’s not a big deal at all and should never affect him long-term.  Thank you, Lord!

So happy that Ella is obeying so much better.

-Ella is responding well to discipline.  After working through Dobson’s “Strong-Willed Child” with a fine-toothed comb, I began to parent differently.  I know that each kid is unique and responds better to certain things, so with some trial and error, she no longer has me pulling out my hair and looking for the great escape route by the end of the day!  I’ve thrown in the towel on the clothes (she won’t wear them at home) and food (if you want to eat it, great- if not, we don’t care).  “Pick your battles!” say all the experts and while Joel and I truly thought we were picking our battles, it turns out we were still picking too many.  Anywho- I think we’re turning a corner here and the majority of our day together at home is pleasant- hec, it’s fun!  Another huge praise God!

-Seffy started crawling!  Can you believe it?  Therapists told us not to expect him to crawl until he was about 18 months old, but look who decided to do it in the last week of his 10th month!  Go, Seffy, Go!

-“Ma Ma Ma Ma Ma!!!”  are the sweetest words I’m hearing right now.  Yes, Seth is looking at me and saying “Mama” (or at least his form of it)- both daddy and Nanna agree with me that he knows what he’s saying and understands it is my name.  And they told me he wouldn’t start talking until he was two….

Baby sign language?  Yep.  We’re doing that too.  I sign several words to him:  eat, more, drink, thank you, in, out, play, please.  Guess which one he’s starting to sign?  EAT!  But of course!  At a whopping 20+ pounds, food is at the top of his list and he was quick to pick that one up.  The boy scarfed down two whole pancakes for dinner the other night without a drop hitting the floor, his chair or his bib.  Nice fine motor skills, brother!  Your OT is proud…and he’s just mastered his first sippy cup last night.  On to drinking from a straw….

-Cognitively, my therapists have told me that Seth is really smart.  I just can’t tell you how that makes my heart swell.  In one conversation, a therapist told me that one of the greatest misconceptions of children with DS is that they are not smart.  Quite they contrary, while they may learn differently from others and have some form of cognitive delay, they can be brilliant just like any other child.  “And this little guy,” raved the OT, “is at the top of the curve.  He is one smart cookie.”  There are no words.

-Joel made it home from his tour-de-Europe.  Amsterdam, London and Paris- what a tough life!  He would call from Paris and rave over the crepes, while I was home eating PB&J.  Aw- I don’t begrudge him one minute of it- Joel works hard and the Lord is blessing him for it.  He had a great trip and brought home presents for me and the kids.  Thanks, daddy!

-Our Aussie friends, Jamie, Gillian and baby Violet (well…..Toddler Violet now) are coming in town for a visit April 19th through the 26th.  We can’t wait to see them as it’s been about 2 years since we were with them last.

-I joined a local group, “Moms of Kids with Down Syndrome” and found a neat group of women to walk through this journey with.  We laughed, exchanged stories, encouraged one another and just celebrated every little thing each of our kiddos can do.  There was a sweet spirit in the group and though I don’t think everyone was of the same faith, I felt that I could freely talk about the Lord and what He’s done in our life.  I see that this is part of my ministry and I will boldly accept the challenge.

-Our nephew Tate has a big walk for “Autism Now” this weekend.  While the kids and we won’t be able to join them in San Angelo for the big event, we’re pulling on our T-shirts and hitting the neighborhood for a good walk to support the awareness and research as it relates to helping kids affected by Autism.  We love you, Tate, and you are important to us!

Tate is holding Seth in this picture

-Ella loves to play “house” now and she’s always the mom, I’m the kid and Seth is called, “Baby Joy.”  I can think of nothing more appropriate.  Ella’s imagination is vivid and I’m starting to hear her sing when she’s playing by herself.  It is the most beautiful sound I’ve ever heard. She is a sweetheart big sister and enjoys finding ways to make Seth laugh and, of course, tell him what to do!  He’s thrilled to be around her most of the time.  They love wagon rides together around the neighborhood and a favorite game is for Ella to build a wall of pillows around Seth and see if he can escape.  According to his PT and OT, this is a GREAT game for his physical development.  Ella may just grow up to be a therapist!

-Sarah painted verses in both of the kids’ rooms.  They are perfect and I’ll post pictures soon!  Ella’s is Psalm 104:33- “I will sing to the Lord all my life.”  Seth’s is Exodus 15:2- “The Lord is my strength and my song.”  I LOVE walking in their rooms and seeing the Word of the Lord that we pray over their little lives.  Now if I can find something for their bathroom….”wash me and I will be whiter than snow???”

-I LOVE our new home and neighborhood and little town.  Everything about it feels like home to me.  I met the neighbors behind us, who are actively involved and on staff at a big church in town.  They have kids the same age as ours and are neat folks.  Another blessing!

That’s about all I have time for right now- we’re doing great!  Thanks for your interest in our family and thank you for letting me brag on Seth- I just can’t help it.  Joel and I commented just the other night- had we known how wonderful this little guy would be and how fascinating the journey, we would have had no anxiety or stress at his birth.  We would have just loved every minute of it as we did Ella’s.  BUT!  We see the purpose of the Lord….and we’re SO EXCITED to celebrate his first birthday just one month from today.  I can’t believe all he’s accomplished and all of the “statistics” and “odds” that he has beaten.  Every day is a blessing and every little thing he does, we celebrate!

Let everything that has breath, praise the Lord!

-Emily

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Video: Ella feeds Seth some Yogurt

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Seth is one happy dude!

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Mom is making Seth squeal!

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World Down Syndrome Day

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TODAY, March 21st, 2009, World Down Syndrome Day is celebrated by families and friends across the globe to mark
the 50th anniversary of the publication of Professor Jerome Lejeune’s
discovery of the extra copy of chromosome 21 which causes Down
Syndrome.
Now known as trisomy-21 because of the third copy of
the 21st chromosome, Down Syndrome was first described by the English
doctor, John Langdon Down, in 1866 but until Professor Lejeune’s
publication in 1959, the ultimate cause of Down Syndrome was unknown.

I’m thankful for this unique and precious chromosome 21 that makes our little Seth, and countless others, the precious, perfect gifts they are!  The Fun House is celebrating life today!!!!

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We call them “Cousin Brudders”

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These two will be hanging out for a long time

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Hamsterdam

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You read that correctly….our daddy is out of the country and according to Ella, he's in "Hamsterdam.  And he will bring me back an Ariel shirt and Ariel pants and a giant Ariel.  Yep!  That's what he gonna do!"  I tried to explain that Europe may not be quite as up on our fish-tailed friend and that she may have to settle for something else.  I'm sure daddy won't disappoint!

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Quick Change Artist

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So much of the blog is now dedicated to Seffy, but I must catch you up on our Ella girl.  She is a firecracker- grandmothers say she is just really busy, but I say she is a FIRE CRACKER!  Joel asked me tonight, "Do you think Jesus would have remained sinless if he was married with children?"  Ha ha ha, Joel….it is a funny thought though.  How does a beautiful little three year old know exactly how and when to push those buttons?  I guess they come programmed that way.  I can't read through Dobson's "Strong Willed Child" fast enough. 

The issue of the week: wearing clothes.  I'm really working on this with her- does any other mother fight this battle day in and day out?   The minute we walk in the door, she strips off her clothes- "Mommy, I need to take off my going clothes!"  Ella would rather run around in her underwear all day than wear clothes. But if she MUST wear clothes, then it's the blue Ariel nightgown….and that is what she calls her "staying clothes," unless, of course, it's time for bed, in which it is simply her Ariel nightgown.  Of course!  Just thumb through our photo gallery and you'll see it in every other picture.  Back to the issue at hand:  Ella must wear clothes all day- every day.  So, I've devised a plan.  It is called the "clothes basket."  Yes, Emily, you are so original.

The clothes basket is in the corner of her room and each morning (ideally), she and I pick out three outfits for the day.  She can change clothes as many times as she'd like thoughout the day, as long as she immediately puts on another outfit that is in the clothes basket.  And no, the string of nightgowns do not count.  So far, so good.  I'm waiting for the 3-day "new and fun" notion to wear off to see where we are with things….but it feels good to have a plan in place.  The outfits for the clothes basket are usually the same, her favorite pink camo flouncy skirt, her pink shorts (or as she calls them, "hot pants"), her Dallas Cowboys t-shirt that is a miniature version of daddy's, a dress and something that mom picks out as her "going clothes" for the day.  Next week's challenge may be try-everything-on-your-plate week.  But I feel the clothes issue must be tackled once and for all.  We can do it, Ella girl!!!!
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