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Seth and Noah have a meet up

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We had a blessed day visiting with Rick and Abbie. It was like a micro Down Syndrome meet up event. Good folks, good food, and a lot of encouragement. God was glorified!

Seth and Noah get to know one another

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East Dallas couple with Down syndrome discovers joys, challenges of marriage | Dallas-Fort Worth Communities – News for Dallas, Texas – The Dallas Morning News

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via www.dallasnews.com

Heart warming story.

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Big Changes for Bubba

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Seth will be three on May 1.  I just can’t believe it!  In some ways, it seems like time has flown, and in others, it seems like we’ve done SO MUCH in only three years.  And I guess we have done a lot in three years to prepare him for this birthday.  Since birth, we’ve been preparing Seth for this day, because at three, Seth gets to start school.

This guy is thriving!

 

Since he was six weeks old, we’ve used therapists for Seth (PT, OT, SLP) through ECI- Early Childhood Intervention.  We’ve had such a fantastic experience and met some wonderful people- friends- through this journey of helping Seth achieve milestones along the way.  As his mother, I’ve received so much support, resources and help in this amazing journey of raising a child with special needs.  No doubt, the Lord chose some special people to come along side me during this time.  I have a new definition of hero:  those that have dedicated their lives and their careers to help kids like Seth and moms like me.

His next steps will be graduating ECI and moving to PPCD- Preschool Program for Children with Disabilities.  On Thursday, we had a big meeting with the school district in which Seth was evaluated by a Diagnostician, Physical Therapist, Speech and Language Pathologist, Occupational Therapist and PPCD Lead Teacher.  Talk about intimidating!  I had a hard time eating that morning…. BUT, the team was extremely warm and welcoming toward Seth and me, and we quickly felt comfortable and “safe” for lack of a better term.

They played with him for more than an hour through some physical exercises (kicking, stairs, jumping), fine motor (coloring, picking up small objects, peg board), cognative (puzzles, following directions, stacking, sorting, categorization) and launguage exercises (expressive and receptive communication).  It sounds like a lot, and it was.  But our little fella did GREAT!  If he was ever at his best, it was Thursday afternoon.  I’m praising God that he felt good and was able to just shine.  Of course, he charmed them and they were eating out of his hand by the end of the evaluation.  PT said he might get some gross motor work at school to help with stairs.  OT was totally impressed that he held a pencil the right way and could draw a circle.  SLP was amazed at all of his signs and emerging/existing words.  Lead teacher said he’ll be the favorite in school without a doubt.  They LOVED him and I heard “he’s SO cute” about a hundred times.  🙂

So, off he goes.  Big changes for Bubba….and Ella too.  Can you imagine how she’s going to react the first day that the bus shows up at our house to pick him up and she can’t get on it to go too?  I know that he’ll do well in PPCD and I’m very comfortable with and excited about him starting on Monday, May 2.  I’ll take him to school the first few days and let him get used to riding the bus home before I send him off on it in the mornings, but that is the plan by the end of the first week.

We ask that you would continue to pray with us that the Lord would help his little brain to make those connections so that his speech will continue to grow.  We’ve seen great improvement in the last few months and it sure is making life at the Fun House a lot easier with a communicating toddler!  God has been so, so good to us and to Seth.  He has been faithful to provide for us and send folks to encourage us along the way.  It’s my prayer that one day, Seth would be able to tell his own story of God’s faithfulness in his life.  When I look at Seth, I can’t help but think about how amazing and how creative our God is.  I’m just humbled that we were chosen to love him every day of our lives.

Pray for Seffy on Tuesday morning, as he’ll be having his fifth set of T-tubes (ears) and a tonsillectomy.  Should be an overnight hospital stay for us, so please pray for rest, complete healing, and logistics.  Pray with us that this surgery will help provide relief and complete healing to Seth’s chronic ear infections and sleep apnea.  To God be the glory!

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Hi! I live under a rock….

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Or at least I think that I do…or did. The last five months have been a whirlwind of new baby, sick, holidays, sick, kids, sick….catch my drift? I’m embarrassed to think that Kyle is five months old and this is probably my first time to really sit down and write ANYTHING. Maybe I did this a few months ago, but I don’t remember it. Well, that’s the third child for you! I logged every doctor visit, growth chart, birth story, milestones, etc., with Ella and Seth. Poor Kyle’s birthday got announced…I think. He doesn’t even have a baby book yet! Isn’t that terrible?

We’re doing pretty okay. Life is adjusting to another new normal with Kyle in the picture. We call him Ky Ky, as Seth named him early on. Sometimes I call him Rainy from his middle name, “Ranen.” Or even that evolves into “Little Storm Cloud” when he gets fussy. Or even Ky Ky Rainy. Whatever we call him, we love him. He is a DOLL. Joel and I look at him all the time and gush over how beautiful we think he is. It’s fun having a baby around again, but let’s not overlook the HARD WORK part of it all.

Ranen means "joyous"

So, in the first four months of Kyle, I had mastitis twice, strep throat and the flu. The kids (even Kyle) have all had ear infections and Seth has had 2 rounds of strep as well….and his daddy had it once too. Whew! We’re tired of sick! I hope to be singing again soon. Now that I’m sleeping well and physically well, I am anxious to get back to leading worship because it just blesses the Lord and is such a great high point in my week!

The kids are all great. I’m working now to get Seth registered with PPCD- Preschool Program for Children with Disabilities- within our local school district. He’ll get to start school on his third birthday, so Monday, May 2nd, my little three year old boy will start going to school five days a week from 9-noon. And did I mention that he’ll be riding a bus? My heart is having a hard time thinking about letting go of him. I know it’s just a few hours, but for the past three years, I’ve been ON TOP of this kid…every therapy appt, every doctor visit, every detail of everything Seth has done, I’ve done with him. I’m prayerful for his teachers, the bus driver, the aids, everyone that touches my little fella while I’m not there. I’m prayerful that they show him love, patience and kindness….but in so many ways, I’m praying that they are affected by him. Praying that our family shows the love of Christ, praying that Seth is their little sunshine just like he is ours. What a privilege that these folks get to teach my kid. (I bet all parents feel that way too!)

Seth is fortunate to have Ella as a sister

Kyle is darling, did I mention? 🙂 He’s rolling over, playing well on his tummy and smiling like crazy. He constantly has his eyebrows up with a look of surprise on his face. He seems laid back and doesn’t laugh easily, though he is quick to smile and tuck his head down like he’s being shy. Mimi says his daddy was a lot like that as a little fella. It would be okay with me if he was like his daddy. He looks soooo much like Ella as a baby.

Ella seems to be on modesty patrol. She’s quick to tell me if some girl needs to “put on more clothes” or if something I’m wearing is not quite up to snuff. She wants to wear dresses and skirts all the time and LOVES LOVES dress up and accessories. I wish I could slow down the growin’ up train….it’s just moving too fast.

Well, off to clean up a kid….Seth actually. He has the stomach virus. I forgot to add that to my list….yes, praying the rest of us avoid this one, but we all seem to share things around here!

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Update on our new friend Noah

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Please pray for Noah

via rickwsmith.com

“When your wife calls when she knows you’re in a meeting it can only mean one of three things; Something really bad happened. Something really good happened. She forget you were in a meeting. Thankfully yesterday, it was all good!”

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I used to have time for this….

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This is Momma Em….you know, I used to have time to sit down and write a little something about the kids on the blog, but HELLO?!  We’ve had a lot going on at the Fun House.  I’m struggling to know where to start, so here goes nothing!

Make-shift kiddie pool

Kyle:  The boy in my dreams. Top of mind is this growing baby boy inside my belly that stretches from my ribs to my bladder, and what feels like wraps all the way around to each kidney.  The size of my tummy is amazing to me!  I continue to raise my shirt up to show Joel and then say, “Feel sorry for me!”  With just 5 weeks to go to my due date of October 19th, horizontal is about the only position that I feel comfortable in, and even that is short-lived….never mind that I’ve just endured August and September in one of the hottest parts of Texas!

Joking aside, I’m thrilled, excited and blessed to be carrying another little gift from God to Joel and me.  Ella and I were just talking this morning at breakfast about how children are a gift from the Lord and it struck my heart in such a new and fresh way.  Really, I don’t know how I can love another child as much as I love my Ella and Seth, but I believe that it must be supernatural….just like I couldn’t fathom making room in my heart from baby #1 to baby #2.  Of course, Joel and I think Ella and Seth are the best things going, so I guess pretty soon, we’ll have three best things going on around here!

I’ve been blessed this time around to have such a smooth, peaceful pregnancy.  Truly, it has been a textbook pregnancy.  Back pain, heartburn, Braxton Hicks contractions, naps, cravings….everything has been right on par with “What to Expect When You’re Expecting.”  Even Kyle’s size!  Each appointment, I’ve measured exactly to date and everything has been routine.  I love “routine.”  Considering the emotional roller coaster we endured during my pregnancy with Seth, I’m just praising the Lord for the ease of this one.  So many people have asked, and if you haven’t asked, I bet you’d like to:  Aren’t you nervous about this baby having Down Syndrome too?  The answer is simply no.  We’re not at all.  It’s hardly crossed my mind over the past 9 months and that’s no exaggeration.  I’m at great peace knowing that the Lord will give us what we need.  He has done it over and over- He is faithful– He will do it again.

Seth:  My little joy.  You may know by now that Seth started walking in August.  Yes!  At 27 months, Seth made up his mind to walk everywhere!  Immediately, he was pretty good at it too- after all, we’ve known he was capable of it for about 9 months….we were just waiting on him to decide it would be his best option.  Now he’s trying to run and I still get so tickled to see those little legs get in gear whether it’s snatching a toy from his sister, chasing her, spinning in circles while playing the harmonica or running into his daddy’s arms.  He loves to blow kisses, wave and say “Bye” as he leaves the room…oh and he ALWAYS shuts the door.  What is it about doors and toddlers that is so fascinating?

Seth is starting to talk more and imitate sounds we are making.  He loves to fold his arms across his chest, throw his head back, scrunch his eyes and laugh when I say, “Seth you’re pullin’ a joke on me!”  He’s a book worm and I think is most satisfied in a big pile of books or snuggled in someone’s lap with a good read.  Seth loves music and is still quite the little drummer and pianist…also pretty good with the shakers.  Truly, I’m pretty impressed with his ability to keep a beat…there may be a hidden talent there!  He loves to sing along with me…..on HIS terms….as he’s started to turn around and quickly “SHHHH!” me if it’s not something he wants to hear.  (I love it!)  “Itsy Bitsy Spider” and “Twinkle Twinkle” are his favorites because he loves to do the hand motions.

He does great at following directions and according to his Sunday school teacher, he’s the most obedient one of the bunch!  Joel and I aren’t surprised…he really is a good little fella.  My how he loves his daddy!  Truly, his worst moment can be turned off in an instant at the sight or sound of Joel.  (And I think the same could be said of his daddy…)  When Joel walks in the door, I’ve lost Seth for the evening.  He is immediately scooped up and whisked away to help Joel unload his work stuff and change clothes.  He loves to grab daddy by the cheeks and just plant a big long tight-lipped kiss with a “Mmmmmmmm!”  Wrestling, basketball, “super hero” and puppy dog are just a few of their favorite games together.  I can’t emphasize it enough.  Seth loves his daddy.  And his daddy loves Seth.

Ella:  My lady bug.  I love this four-year-old!  What fun we have together and such lively conversations we share.  I’m amazed at how much she picks up on and how she never seems to forget anything!  She’s started back to preschool this year and walked confidently into that classroom without even looking back at me.  I practically had to stand on my head to get her attention to wave and blow me a kiss goodbye, but the art table had a strong pull for her attention.

Joel tells me all the time that Ella is just like me.  For the most part, I’d have to agree (and I secretly LOVE it).  She is a performer for sure, wants to be the center of attention and is confident with a capital “C.”  I’m not sure that I was completely like this as a little girl, but I’m interested to see where she’s headed.  As Dr. James Dobson describes disciplining the strong-willed child, we’re doing the best we can to “steer the ship.”  At the same time, Ella is a good friend to others, very loving with Seth, tender-hearted, a people-pleaser and has a great sense of humor.  Her greatest fear right now is having to grow up one day and leave her momma.  I haven’t told her yet, but I feel the same way.  I think my mom did a great job of modeling to me what it is to first be the parent and second to be the best friend.  I think Ella and I are on that same path and my relationship with her is one of the most special things I’ve ever known.

She’s excited about meeting baby Kyle, but not thrilled about being away from me while I’m in the hospital.  We’ve talked about it enough and I think praying about it is all I can do now!  Grandmothers, please bring her some gifts!!!!!  Ella loves to talk about how she and I get to do things as “just the girls.”  And she LOVES to imagine scenarios where she and I take off on an adventure to leave Daddy, Seth and Kyle at home….because they can’t do girl stuff with us!  We love to paint pictures together, work puzzles, paint our toes, play baby dolls, dress up and spray ourselves down with “smell goods.”  We love to sing together and I applaud/encourage every little song she makes up.  She tells me that she’s practicing so that one day she can be ready to stand on the stage and worship God like I do.  Be still my heart- I have nothing more to say!

Joel:  My main man.  What to say?  I’m not one for mushy, romantic stuff…and Joel and I still joke with one another about why I’ve yet to pour my heart out about how fantastic he is in some sort of creative acrostic for the world to read.  (So honey, let the pregnancy hormones speak for me at this point to tell you how much I love you, because I’ll probably never declare it so plainly for all the world to read again!)  I don’t think I’ve ever loved him more than today…and tomorrow, I’ll say the same thing.  I’m thrilled to get to love these little blessings with him.  I’m proud of him for all that he does for our family, but I’m most proud of his character.  He is a servant-leader in our home.  He knows how to love me and does a fine job of it.  Joel is my best friend….he has been for almost 13 years now.  He is irreplaceable.  I can’t think of anyone I’d rather sit in a quiet room with- just being near him puts me at peace.  So in a few short weeks as we welcome another little fella into our home, I’m so, so thankful that Joel is his daddy.

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A testimony to God’s faithfulness

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On July 4, Emily and I had the opportunity to speak in my brother’s Bible study class at Green Acres Baptist Church in Tyler.  I’ve pasted in the outline of our talk.  I hope you are encouraged.

Frame it up:

John 12:27-28

27 Now is my soul troubled and what shall I say? Father, save me from this hour? But for this purpose I have come to this hour. 28 Father, glorify your name. ” Then a voice came from heaven: “I have glorified it, and I will glorify it again. ” 

This testimony is just another story of how God continues to glorify His name. 

November 28, 2005

Ella is born

— From the world’s perspective, she is the ideal: beautiful, charming, and smart.  She is precious to us and God has big things in store for her. 

— We decide to have another child.  Needless to say we have a set of expectations about what our next child will be like. 

December 2007

— 1 in 8 odds that this unborn baby boy has Down Syndrome or Trisomy 21. There are both physical and mental developmental concerns with these children.

— At this same time I had been praying and encouraging a close friend and fellow believer whose son was born with an extremely rare heart defect. 

— There I am talking with him about God’s sovereignty in all circumstances. God is preparing me.  I think I’m encouraging him, but actually I’m preaching to myself. 

Excerpt from my blog post: 

At that time I wrote, “My flesh longs for a perfectly “normal” boy. However, my flesh leads me astray all the time. My dependence is on the Holy Spirit who lives in me.”

EMILY

May 1 2008

Death of expectations and the birth of a glimpse into God’s plan.

Seth is born. His name means “appointed”. We chose this name long before we knew about any of this.  


My Blog Post on May 1

Friends and Family,

God has blessed us with a wonderful baby boy. His name is Seth. We are thankful for his life and rejoice even now in the ways God will use him for His glory. He was born at 8:55 p.m. and weighed 6 lbs 11 ounces. Seth was born with a chromosomal defect called Down Syndrome. Although over half of Down Syndrome babies have heart defects of some sort, Seth has a strong healthy heart and impressive muscle tone! We know the challenges ahead will be many in raising little Seth, but we also know that God can use Seth’s life to draw men to Himself. That was our prayer before we saw Seth today and continues to be our prayer. We want Seth’s life to be used to proclaim Jesus to a lost world. For Jesus is our only hope and we 

trust in Him completely. Rejoice with us as we praise God for this gift.


JOEL


My Blog Post on May 16

1. I’m grateful for Seth’s continued good health

2. I’m grateful for Emily’s tremendous outlook on the entire situation. She is definitely demonstrating godly character as she depends on the Holy Spirit for strength. She is living out what Paul says in Romans 5:13.

“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.”

3. I still have a feeling of loss when I think about the things Seth and I may not get to experience together due to some of his potential limitations. I can state it this way:

I have a pretty good idea of things that he and I will probably miss out on. I’ve looked forward to doing some of these things with my son years before I became a parent. However, I’m also sure I don’t yet fully understand what Seth and I WILL get to experience that we would not have otherwise. I confess that all of this thinking is quite selfish in some ways and reveals a lack of trust in God’s plan. So, when I get over feeling sorry for myself, I redirect my energy to praying that Seth would know Jesus and be a righteous man. What could be more fulfilling for a dad than this!

Proverbs 23:24

The father of a righteous man has great joy; he who has a wise son delights in him.


EMILY

God heals Seth’s Ear – short story

 

JOEL


Gregg preaches and shares Seth’s story. 

Lives are saves and countless are changed and continue to be. 


James 1:2

Count it all joy, my brothers when you meet trials of various kinds for you know that the testing of your faith produces steadfastness. 


God can and should get the glory in our good times and successes, but He seems to get more in our trials.  Be steadfast in your trials for His glory. 


We come back to this:


I HAVE GLORIFIED IT (my name) AND I WILL GLORIFY IT AGAIN.


John 12:27-28

27 Now is my soul troubled and what shall I say? Father, save l

me from this hour? But for this purpose I have come to this hour. 28 Father, glorify your name. ” Then a voice came from heaven: “I have glorified it, and I will glorify it again. ” 


Let’s expand a bit on this text.

1. Jesus’s soul is troubled in trial


“Troubled” means to be stirred up or unsettled. 

You will endure trial and you can be comforted that even Jesus didn’t particularly enjoy the process. “you will have trouble”


John 16:33

33 I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world. ” 


2. Save me from this hour? 

Jesus didn’t consider His ease or convenience more important than God’s purpose in Him going to the cross.

Jesus is completely able to empathize with us in our trials because He experienced the worse possible trial a man can endure.


 Hebrews 4:15

15 For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin. 


The God of the Bible will mourn with us as we struggle and at the same time use those circumstances to draw men to Himself.

  

3. Glorify your name

Jesus is struggling mightily with the idea of the suffering he is about to endure. But, His ultimate focus is for God’s name to be glorified.


4. God is in complete control

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Seth taking it strong to the basket

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Nice form on that shot, Seth!

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Video: 2010.06.02 Seth walking like a pro

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If you make it fun, he’ll show off.  Ella made this video.

Look at those eyes!

 

 

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Video: Rock star

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photo.jpg
This is fun!

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