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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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Buy it today: Finding God’s Will by Gregg Matte: Books

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Find God's Will by Gregg Matte

In this book our pastor, Gregg Matte, weaves scripture and stories to help the reader find and submit to God’s will. We were excited that Gregg used Seth’s story as a way to demonstrate God’s grace and sovereignty.. May God use it for His glory.

Support missionaries by doing your shopping through Kingdom Markets.


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Video: Ella and John 3:16

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Ella speaks the truth with conviction.

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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.”


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.


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.


God heals Seth’s Ear – short story



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:


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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Miracle Ear

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I took Seth in this morning for a routine follow-up to check his most recent tube placement from early December.  Along with seeing our ENT at this check up, we were also to meet with the audiologist to check Seth’s hearing.  Not uncommon at all that Seth would have a hearing test, however, I never expect much from these as he failed every hearing test he took last year.

Continue Reading…

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School, Speech & Signing

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Seems my updates are not as often, but we’re on the move over here! I just look at Joel sometimes and say, “It’s these kids!!!!”

One sweet girl!

Ella girl started preschool this week. It was totally not a big deal for her–she’s a total sanguine and doesn’t seem to be bothered by new situations or new people. She met lots of new little friends, though we can only remember about 3 of their names, but I’m sure that will all change by the end of the month. We got to decorate a little paper doll to look like her that the teacher stuck up on the bulletin board. We also colored her “take home” bag (I’m new to all of this….) with paint pens. It’s a beautiful work of art for a 3-year-old! She got to take her beloved Banjo (a stuffed koala bear brought from our friends when they lived down under) for show and tell the first day. So far, all I’ve gotten from her is that she gets her arm stamped whenever she’s been a good singer in music class and that they walk to and from their classroom “like one big snake instead of a bunch of little worms runnin’ all over!” She’s having fun and learning things with a great curriculum- I’ve got great expectations for the Christmas program!!!

Enjoy the smile, excuse the crumbs

Seffy boy is changing so much, so quickly, as all babies do. He waves and says “HI!” to most everyone we pass at church, the grocery store, the parking lot….you name it. He loves to smile and say cheese whenever a camera is pointed in his face! This little guy is a social bug too, I guess. He’s really working on talking and we’ve now added a speech therapist to jump start the talking. I’m sure you’re thinking, “A speech therapist? What do they do with babies?” Well, I’ve got a pantry full of sticky james, jellies and marshmallow cremes to slather on his lips and inside his cheeks to encourage the tongue to “move independently of his jaw.” And I bought an electric toothbrush, a $40 whistle kit from a specialty Web site, stuff to make Seth’s own personal “look book,” and installed a full-length mirror in the playroom to encourage us to sit in front of it and make faces, sing, laugh, etc. Speech therapy has proven to be very involved, but very fun indeed! We’re taking pictures of all of Seth’s favorite objects, places, toys and foods to compile into a book where we’ll label each thing and start working on building his vocabulary. I’ve heard that if it takes a child like Ella 10 times to learn something new, it will take Seth 100 times to learn the same thing. Repetition is key, as are pictures of literal objects, rather than sketches or cartoons. SO! Off we go…..you can do it, Seffy! He’s signing a lot to Joel and I, which is so great to give him some way to tell us what he wants. What a smart cookie, that little one. We’re proud of them both.

Special news for our family: Joel is being ordained as a deacon this weekend in our church. It’s an honor for him to be selected as a “servant leader” within the body and he is humbled to serve God and the body of Christ in this way. I’m so proud of him and can think of no one who better fits the description of a gentle leader. He is bold in his faith, ready to defend the Truth, yet tender-hearted in the way he loves others and cares for their walk with the Lord. Joel is a man of integrity who does the right thing. He is not hasty in making decisions that may affect our family or even the lives of others. I’ve known him to be very deliberate and prayerful in his response toward others. He is sensitive to the Holy Spirit’s callings on his heart and moves forward in boldness with complete peace in the Lord’s will. I am so proud of him and blessed to serve under his leadership in our home. Ella and Seth wanted to chime in that he’s the best daddy ever…..His dad and brother will be praying over him during the service Sunday morning- and that means more to him than words can describe. As the Lord brings us to mind, pray for Joel that the Lord will guide and direct his steps as he serves in this way.
We’ve started back into a new year with the worship ministry. I’m directing our contemporary choir again this year and loving every moment that we get to come together to worship. The Lord is drawing new people to the ministry, which is so exciting and so welcomed. I still can’t believe sometimes that I’m part of something so big for God- so unique. I was just talking to my dad about it this weekend and said that if you’d asked me even 5 years ago if I’d ever be directing a choir, I would have QUICKLY said, “No way! I’m not qualified to do that!” I still feel inadequate in so many ways, but “His strength is made perfect in my weaknesses.” (2 Corinthians 12:9) People keep coming back, and I still feel called to it, so I know the Lord has plans in how He’s using us week-by-week in worship. Again, I must say how much worship has changed for me now that I’m a mother, but particularly since Seth’s arrival. I see the Lord’s plans as I continue to walk the path He’s laid ahead of me. People that I don’t know have mentioned that they know my testimonyour story with Seth- and they are blessed to see that I can joyfully serve, love, honor the Lord in my worship. My response to that is and always will be: His is my only hope. Apart from Him, I am nothing, I have nothing. I cannot place my hope in Joel, my children, my family, my community, my job, my ministry. None of those things will ever satisfy and every one of them may fail me yet. But my hope is in the Lord….I have a lot of reasons to praise Him.
“Rejoice in the Lord always! I will say it again, rejoice!’ Philippians 4:4

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Here I raise my Ebenezer

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Praise God for what He has done and for what is yet to come!

As you all know, we’ve just moved…..totally relocated.  New house, new surroundings, new shopping spots, everything is new!  Our perspective is yet again, renewed.  I’ve just got to tell you what the Lord has done….

About a month ago, I got an idea into my head that through our move, the Lord was going to reveal Himself to us in a major way.  The more I sought after that thought, I began to think that He was going to show us a sign- a major sign- that directly related to Down Syndrome.  A sign that would be confirmation for us that we did the right thing in moving, as Seth’s education and care were of high priority with the relocation.

I like my new neighborhood!

Stop right there.  Give me a second to explain my faith.  I have never relied on “signs and wonders” from God in exchange for my belief in Him.  Yes, He does them- He performs miracles every day.  But He doesn’t owe me that.  That’s not real faith- real faith is saying, “Lord, whatever may come in life- good or bad- whatever you choose to do or not to do- I believe in you and I will love you.”‘ That has always been my heart, and all the more in the past year as I’ve leaned into Him for my daily bread.  God doesn’t owe me a “sign.”  His grace is sufficient for me, and that grace, I don’t even deserve.

Back to the story.  Nonetheless, I really felt an urging from the Holy Spirit that a sign was on it’s way.  A bit skeptical myself, I didn’t share this with anyone!  I didn’t tell Joel or even my mom for that matter.  I just kept it to myself and wondered.  I would wake up in the night and wonder what on earth it could be….I’d imagine either the buyer of our home or the seller of our new home having a child with Down Syndrome.  I imagined a neighbor having a child with DS.  “Ok, God- that would be the ultimate!  A neighbor kid with DS.  What could be more obvious than that?”  My mind would go back and forth as to what it could be.  I finally resolved myself to just wait for it.

The week of the move arrived and I was getting excited…..about everything!  But I wanted to see what the Lord was going to do.  Closing day arrived and I started “fishing” in every conversation with every person at the title company.  Sure enough, in my conversation with our buyer and her agent, I found out that they were both full-time speech therapists.  Thanks to all of Seth’s therapies, we are now very familiar with the role speech therapy will have in his development, so we dove into conversation about it.  They knew by Seth’s pictures in our home that he had DS, they worked with DS kids every day!  

“Well, there you go!” I thought.  “Thanks, Lord.  That was a sweet little tidbit.  Not EXACTLY what I was thinking or hoping for, but okay.  After all, what was I thinking- a sign???”

After three hours of signing my name in every form imaginable and talking about a bunch of stuff that I didn’t really understand, we’d sold and bought a house.  With grandmothers furiously packing and taking care of the babies at home, Joel and I asked for the best local seafood recommendation and found ourselves enjoying shrimp gumbo and key lime pie for lunch.  Before the meal was over, I looked across the restaurant and saw a mom and her daughter enjoying lunch.  

“Huh!  What do you know?  The daughter has DS!  That’s neat.  Ok, Lord.  That was a little more what I was thinking.  That’s just sweet of you, Lord.”

I started to cry.  After all, I was exhausted, stressed, emotional, you name it!  And then I had to explain it all to Joel.  I told him what had been on my heart for the past month and how I didn’t say anything to him about it because I didn’t want him or anyone else to think I was crazy.  I told him about how I could just see myself eating lunch with Seth when he’s all grown up, just like that mom and her daughter.  I laughed at how they’d ordered fancy drinks with umbrellas in them and how we’d surely spoil him to death once our other kids were grown and gone.  Then I told Joel that secretly, I was thinking and hoping that one of our neighbors would have a kid with DS….that’s the “sign” that I was looking for, but the conversation at the title company and the family at the restaurant were good enough.  He agreed- it was sweet of the Lord to give me those two little tidbits.  Just a little something I could carry with me through the day and coming weeks- it was good enough for me!  I called my mother to relay all of the details.  She thought it was pretty neat too….

Moving day arrived.  With the help of a lot of really good friends, we loaded the moving truck and our cars like jigsaw puzzles and headed to the new house!  After ordering enough pizza to keep the worker bees buzzing, I pulled into the driveway.  I took a deep breath- this was home!  Our first day of a new chapter.

As I stepped out of the car, I looked into the cul-de-sac and saw a little boy dart out of his garage, bouncing a basketball and talking to his dad and big sister.  My heart jumped into my throat and I locked in on him.  Time froze for a moment.  I wanted him so badly to have Down Syndrome.  But….he looked so normal.  He was playing basketball!  He was running around and laughing…..just being a kid.  I studied him.  And suddenly, his face turned toward me and my heart stopped.  His eyes.  His eyes were little rainbows.  His eyes looked just like Seth’s eyes!  Could it be??  YES!  HE HAS DOWN SYNDROME!  THE KID WHO LIVES TWO HOUSES DOWN FROM US HAS DOWN SYNDROME!!! 

I couldn’t catch my breath.  I started to sob and ran into the house yelling for Joel.  He was trying to install the washer and dryer- his buddies were working all through the house.  But what do I care?  Look at what the Lord has done!

Breathless, I pieced it out as best as I could, “Joel!  Joel!  Joel!  He has DS!  The boy- (pointing) there’s a boy- in the cul-de-sac- he lives next to us- he has Down Syndrome Joel!  I’m sure of it!  He looked right at me!  His eyes are like Seth’s!!!!  I TOLD you Joel!  I TOLD you yesterday this was going to happen!  Didn’t I tell you!  Look what the Lord has done!  This is AMAZING!”

Joel was worn out.  But he couldn’t believe it.  “Yeah, you did tell me that yesterday.  Unbelievable!  Are you sure?  This is crazy!?”

What a moment.  Never in my life have I ever felt more like I was dead center in God’s will for my life.  Bull’s eye.  I am still in awe and it still moves me to tears to think of what He did for us- for me- in all of this.  

He’s the same God.  The same God that created the world.  The same God that spoke to Moses in a burning bush.  The same God that blew down the walls of Jericho with the sound of horns and shouts.  The same God that came to earth in the form of a man.  The same God that spoke a word and the oceans and winds obeyed.  The same God that at a word or a touch healed thousands.  The same God that died on a cross and rose from the dead- Hallelujah!  The same God of the Bible is REAL.  He is Emmanuel- still God with us!  He still speaks, He still works, He still moves.
For us, this is an Ebenezer– a stake in the ground.  A marker of our faithful journey with the Lord.  And I assure you, I would still have served Him and loved Him if He’d given me no sign at all.  Isn’t it incredible that He would give us that?  Praise God that He chose to speak to my soul and work in my heart to reveal Himself- His power- to me in that way.
I have reflected on it over and over.  And I will continue to go back to it for days, weeks, months and years to come.  That little boy?  He’s precious and so is his family.  I wiped off my tears and ran to meet them as quickly as I could.  They’ve been so generous to help us in any way- what a resource they will be to us- what support.  It’s overwhelming.  The Lord hand-picked this house for us- he picked our neighbors.  He allowed our home to be robbed last fall to set the entire move into motion.  I clearly see His purpose in that now.  He works all things for the good.
I don’t know your situation.  I’m sure it’s far different from mine.  I don’t know your hurt or your struggle, but everyone has something, and if you don’t, it’s just a matter of time.  Let me encourage you in saying that I know the Lord has master planned your life, just as He has mine.  He knows where the hurt started and He knows when it will end.  He knows the next chapter in your life.  He’s already got it figured out.  You just have to walk through it.  Walk every day clinging to Him for your daily bread, your strength.  Prayerfully consider your decisions and faithfully walk through the doors He’s opened for you.  He may never speak to you in the way that He did me….He may never speak to me in that way again either, and that’s okay.  I assure you that He’s interested in you.  He wants to be that involved in your life…..He wants you to recognize that every detail He’s orchestrated for His glory.  And if you don’t know Him personally, drop us a note so we can have the privilege of leading you to Him.
Life comes down to one thing:  Love God.  He loves you more than you can imagine.
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A Year Ago Today

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I’ve got butterflies in my stomach as I sit down to write this……A
year ago today, I sat in the same cozy chair that I’m in right now in
my living room and answered the phone. It was the nurse from my OBGYN
who called to let me know the results of my quad screen.

“1 in 1000 chance of neural tube defects, (Great!), 1 in 1000 chance
of spinabifida, (Wonderful)……{sigh over the phone}……and a 1 in
43 chance for Down Syndrome.”

“Ummm, what? Could you say that…did you mean…..what did you say
again?” {My heart was in my throat, beating faster than ever

“The quad screen tested a 1 in 43 chance for your baby to have Down
Syndrome….what we’re going to want to do now is get you in for an
ultrasound as soon as possible. Hold on while I call down to see when
we can work you in. Don’t worry, Emily. These tests are wrong 90% of
the time.”

Seth says there's nothing to fear

Fear. Panic. Crying. Sobbing. Weeping. I have to talk to Joel.
This is a mistake. This isn’t happening. This is crazy. Things like
this don’t happen to me- it happens to someone else. Why would God
let this happen? We serve in our church week after week. We’re good
people. We do all the right things and try to teach our daughter the
same. Our kids are supposed to grow up to really make an impact in
this world with their educations and willingness to serve God and love
others. This wasn’t in my plan- when I dreamed of how my life would
go, this wasn’t even a thought. How am I supposed to sleep until I
know for sure that my baby is okay? It’s okay- I just know this has
to be a mistake. Why did I even take that stupid test to begin with
when the results are so often wrong? Who can I call? I don’t know
anyone else who’s had this happen…..or do I and people just don’t
mention it? I need to talk to God- if I pray hard enough- if I beg
Him, this will go away. He always works things out for me, so He’ll
take this burden off us.

You know how it turned out. Seth.

Joy.  Laughter.  Peace.

We’ve got him. We’re living with Down Syndrome every day. And you know what? It’s not scary. It’s not bad. It wasn’t a curse for something we did wrong. It was God’s plan for our lives.

It was who God created Seth to be. We’re still
serving in our church week after week because God is faithful and
deserves our honor and praise. We’re teaching both Seth and Ella to
love God that way. Seth will grow up to make an impact on this world-
in fact, he already has. This wasn’t how I planned my life- it’s way
sweeter with Seth in it. I sleep great at night because we’re in the
middle of God’s plan for us. Seth wasn’t a mistake. I’m glad I took
the test because it forced me to rely on God a whole lot more than I
did before. I know a lot of people who are now walking this road with
me and their precious, perfect little children. And I still need to
talk to God- every day, every hour, every minute. If I pray hard
enough, He’ll continue to lead my heart. He always works things out
for me for the good, and Seth is proof of that.

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Biggie Boy!!

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He can already stack blocks! 🙂

Seriously, could he be any cuter?  Seth had his 4 month check up today and he was 14 lb, 7 oz and 26 inches long.  He was 12 lb, 12 oz this time last month and grew an inch as well.  Looked back at Ella’s baby book and he’s the same size she was at 6 months!  He’s keeping in the 100% height and 75% weight on the DS charts.  Way to go Seth!

Dr. Shaffer said he was doing really, really well (I can’t hear it enough!).  He is unable to see inside his ears because his canals are so small (think the width of a coffee straw).  Joel and I’ve been reading up on the possibility of fluid standing in the ear drum that may never go to infection, but could impede their auditory learning, so we asked for a referral to an ENT.  The doctor gladly gave us the name of a group of pediatric ENTs at Texas Children’s.  I’ll be making that appointment soon to check him out and keep a look out for it.  We’ve just read so much about how important it is that they hear clearly in the first two years, as that makes a big difference in speech and word patterns with therapy.

We have an appointment with a pediatric cardiologist tomorrow at 1pm at Texas Children’s.  The doctor will read through his ecocardiogram from the NICU when he was born and explain things to us.  Shouldn’t involve testing.  Once again, there’s not been anything that would lead us to think something is wrong with his heart, but we’ve read and been told by our pediatrician that it would be wise to have a full work up done.  The report did name some “minor abnormalities” so we want to know what they are and if there are any long-term implications.  I feel a little anxious about it and will be glad to check that off the list.  

While we were in the waiting room at the pediatrician today, we met Cody- a little two-year-old boy with Downs.  He was PRECIOUS!  Cody was running all over the waiting room, doing typical toddler stuff.  I started talking to him and he immediately grabbed his cup of milk and ran to get in my lap where he hugged on me and Ella and sat with us to read books for quite a while.  He was with his dad and grandfather and I was able to compare notes with his dad on ECI work, therapies, etc.  Cody didn’t have many words yet, but they were doing sign language with him to communicate, which I plan to do with Seth.  He was a ray of sunshine and such an encouragement to me to see a very normal little boy running around in his high top Air Jordans, greeting people at the door with a toothy grin, sharing his toys with Ella, picking up things that dropped on the floor and trying to escape from his daddy!  Glad too that our pediatrician has him just two years ahead of Seth….along with several other DS kids from what Cody’s dad said (from what I’ve read, it is rare that a pediatrician would have more than one or two DS kids in a lifetime career).  

I was able to share with him how the Lord has used Seth in our lives.  Cody’s dad said they were surprised at birth with the DS diagnosis and from the way he talked, they would test on any subsequent pregnancies so they could “make a decision” if another child had it.  I told him that we had a pretty good idea he had it and there was never any decision for us- we were going to keep him because it was God’s plan.  “Oh really?!  Wow….that’s…..wow!” he exclaimed.  I shared with him the significance of Seth’s name- “chosen by God.”  I was blown away that this seemed to be new information to him- as if he’d never thought of it as a part of God’s plan.  I guess it’s so easy for people like me to be in my church bubble that I fail to remember that the majority of the world doesn’t think like Joel and me.  Anyway, Cody’s dad ended up agreeing that it was all part of God’s plan.  I knew the minute I saw Cody that the Lord made a divine appointment for us in the waiting room that morning….and sure enough, a seed was planted.  I just had that overwhelming feeling from the Holy Spirit that I needed to start a conversation with this family and I’m so glad that I did- everyone in the waiting room had the chance to hear that conversation too and I hope it spurred them on to think if anything else, about how precious these little lives are that the Lord has entrusted us with.  

So, now I’ve added sweet Cody and baby Trig to my prayer list…..a couple of Seth’s “brethren” as Joel says.  I just can’t tell you how excited I am that Trig Palin’s story has been making the news recently and we’re praying that the Lord uses it to provide more and more opportunities for people with DS and other disabilities.  I don’t think I would have given it a second thought this time last year…..my, how things can change so quickly.  Thank you, Lord…I wouldn’t go back for anything.

Be blessed and love God-  Em
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I Am Strong in the Lord

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In the wee hours of the morning following Seth’s birth, I found myself alone and afraid in a cold, dark hospital room. Despite comforting words from nurses and doctors, and Joel being just a phone call away, I don’t think that I’ve ever felt so alienated. My only comfort came from clinging to God’s Word- and I mean that literally. I held my Bible against my chest while I tried to sleep, with fears, anxieties and stereotypes dancing through my head. At 4 am and with no chance of sleeping, all that I could think of was a song written by my sweet friend Star Smith that I clung to during dark days throughout our time of waiting- “I Am Strong in the Lord.” (If it’s not in your iTunes library, I highly recommend you download “I Am Strong in the Lord” by The Smith Band. It will bless your socks off.)

It's just the beginning for Seth and Ella

So, I pulled out my iPod and found the song. Turning it on and just opening the Word of God, I sobbed. I wept. I cried out to the Lord. “Why Seth? Why our son? Why does he have to have Downs? How am I supposed to do this? How can I give him what he needs when I feel like I haven’t even mastered mothering a perfectly normal toddler? How is this going to change Joel and me? How will people treat us? How will people treat him? I don’t want to do this, Lord. It’s going to be hard and it’s going to hurt.” I closed my eyes and with tears streaming I sang these words:

I am strong in the Lord and in the power of His might
I confess that my strength comes from Him.
On my own, I am weak, and I cannot see to fight
But my strength- it comes from the Lord.

I lift my eyes up, where does my help come from?
It comes from the Lord, the maker of heaven and maker of earth.
He is the fortress of salvation for His children as they cry
You are the Lord and you are the strength, the strength of my life.

You held out your hand and your healing power
Causing my eyes to see
You poured out your Word in my darkest hour
Teaching my heart to see

That I am strong in the Lord and in the power of His might
I confess that my strength comes from Him.
On my own, I am weak, and I cannot see to fight
But my strength- it comes from the Lord.

Once again, I felt His supernatural peace and healing wash over me- I felt His presence heavy upon me as I sat there in my bed and just worshipped Almighty God. How humbled I am that the God of all the universe is interested in helping me walk through this. I am not alone- I am not alienated. No, I am even more aware now of His help and His love for me and Seth. I furiously scribbled these words in the back of my Bible, knowing full well these words were from the Lord and were direction for me in how to walk through the unknown days ahead. I searched my concordance for the word “strong” and reflected on the following:

Deuteronomy 31:6- Be strong and courageous. Do not be afraid or terrified because of this, for the Lord your God goes with you. He will never leave you nor forsake you.

Proverbs 18:10- The name of the Lord is a strong tower; the righteous run to it and are safe.

1 Corinthians 16:13- Be on your guard; stand firm in the faith; be men of courage; be strong.

2 Corinthians 12:9-10- “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore, I will boast all the more gladly about my weaknesses so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

Ephesians 6:10- Finally, be strong in the Lord and in his mighty power.

Praise you, Lord Jesus! You are my strength- and I don’t have to try to do it by myself. You are my fortress that I will run to every day. It’s neat how the Lord prepared Joel and I for this in the months, weeks and days leading up to Seth’s birth. I was studying in Ecclesiastes 3 the days before delivery- where Solomon talks about how there is a time for everything. A time to weep and a time to laugh stands out (vs 4), appropriately. Surely, the Lord promises us in Psalm 30:5, “weeping may remain for a night, but rejoicing comes in the morning.” With no physical strength to speak up, but certainly a renewal of my spirit by Jehovah Jireh- my provider- I buzzed the nurse and asked to be wheeled down to the NICU at 5 am….I had a very special little guy waiting for his mommy to come sing over him.

Still praising, Em

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