Friday, December 31, 2010

Doubt, reposted

This is a post I wrote back in March. I revisit it from time to time because I need to. I wonder if there will come a time when I won't. In the meantime, I thought I'd repost it for anyone who missed it the first time around.


doubt

(It starts as a whisper, a tiny niggling in the back of my brain.)

Recently, I posted a comment on a site stating that I am proud of my son's designer genes, that Down syndrome is part of his charm, and that his chromosomal enhancement is actually kind of cool. The responses were less than stellar. "Is this a joke?!" "A birth defect isn't cool!" "A genetic accident isn't something to be celebrated...it's a tragedy." "That's like saying leukemia or other diseases are cool."

Birth defect......Genetic accident........Tragedy......Disease

Doubt

(A little louder now, more insistent, it pushes forward toward the front of my conscious mind.)

Eon just got over being sick. He was sicker than the rest of us......again. Sometimes, I think he's doing phenomenally well, but, sometimes, I notice things like him staring at his hands in endless fascination or seeming not to recognize his own name and I wonder. Is he fully there? How much is he really getting? How far can he go? What is his purpose?

Sicker.......Staring........Purpose

Doubt

(Starting to sink a little into the abyss of fear.)


Can I do this? I feel inadequate. The thought of being the mom of a kid with special needs is overwhelming at times. Am I doing enough? I feel like he just hangs out with us most of the time. I rarely do structured therapy with him. We're not doing flashcards or an early reading program. We play with him and include him in our lives, but is that really all he needs? Am I strong enough to deal with all the therapies, appointments, and advocacy?

Inadequate.......Not doing......Overwhelming.......Enough


DOUBT

("Help me, Lord," I whisper.)

(and then...)

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. Psalm 139:13-16

So God created man in his own image, in the image of God he created him; Genesis 1:27


You created......Wonderfully made.........Image of God


truth

(Yes, he is fearfully and wonderfully made. He was created in your image. You planned his days long before he was born.)


For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

The Lord will fulfill His purpose for me; Psalm 138:8


Future.......Hope.......Purpose

Truth

(Of course! You, oh God, have plans and a purpose for both of us. How do I fail to see it sometimes?)


I can do everything through Him who gives me strength. Philippians 4:13

But He said to me, "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. 2 Corinthians 12:9

Strength......Grace......PowerItalic

TRUTH

(You are my source. You are my strength and my shield. I can do this through you and you alone. I am not strong enough, but I don't have to be. As always, you are.)

Thursday, December 30, 2010

God Cares

Julia and her husband adopted Aaron from Ukraine this past year. He had been transferred to a mental institute a year before they were able to rescue him. In country, they ran into difficulties and spent a good deal longer there than they were anticipating. They visited Aaron everyday and began to get a very bleak picture of the lives of the boys who lived with him in the institute. She calls them "The Lost Boys" and has been shouting from the roof tops about their plight. Today, she reveals some good news, that only God could bring, about "her" boys. Please read the entire story here. ***Warning: You will need tissues. God cares so deeply for these children. Shouldn't we do the same?

Monday, December 27, 2010

Moments of Sadness

I never really went through the grieving process I was apparently supposed to have when I had a baby with Down syndrome. I did experience about 5 minutes of raw fear after getting the diagnosis before they placed him in my arms. Once I held him, I knew it was going to be okay. A friend of mine had been updating family and friends during labor. I called her about 20 minutes after delivery to tell her he was here. I said, "He's here! Simeon Israel. He's the cutest baby with Down syndrome we've ever seen." She responded that she was sorry and I said not to be...that he was perfect. I meant every word. I also joked that we needed to get one of those bumper stickers that says, "My child has more chromosomes than yours". Acceptance came easily for me.

I don't know if previously considering adopting a child with Down syndrome or knowing I had a high risk helped prepare me, but I never got depressed over it. I have had moments of sadness periodically, though. Very few and far between them almost two years into it, but sometimes they come out of nowhere.

I had one the other day. I was shopping at Aldi and I heard the familiar sound of an insistent "Uhhhh!" I recognized it because Eon hollers it frequently when he's excited or wants attention. I don't notice it much at home because all the kids are loud around here. But in the middle of a crowded store, it was noticeable. As I was bagging, I saw her. She was standing in line with her mother pretending to talk on a cell phone. What she was saying was completely unintelligible, but she was obviously enjoying herself. She looked to be about 7 or 8 and had on the cutest sparkly tennis shoes.

I never know how to approach people, especially if Eon's not with me, but I decided to go for it. I walked up and said, "I think we have something in common. My youngest son has Down syndrome." The mom brightened and asked me how old Eon is and we chatted for a minute. Then I asked how old her daughter is. I was completely unprepared for her response. "Sixteen," she replied. My heart dropped into my stomach and I hope she didn't catch the dismay I'm sure I wore on my face. I mumbled something to the girl about being a "tiny little thing" and that I liked her shoes. She didn't appear to understand me.

We chatted some more and she mentioned something about "the other little girl I watch that's a month younger than her"...

Another 16 year-old that needs a babysitter?!

You're probably thinking, "Duh. Of course a teen with Ds might need someone to watch them." I know that cognition varies with individuals and people with Ds function at different levels, but I guess I hadn't gotten that far. I was unprepared to see a young woman with Eon's condition still engaging in behavior that Eon currently enjoys (loudly vocalizing and pretending to "talk" on the phone). It threw me.

And, the encounter has stayed with me. I'm still trying to process it and my response to it. I just assumed Eon would progress beyond the toddler he currently is. He is so typical in many ways, I sometimes forget that he's behind in other ways. My expectations for him are high. Now, I wonder if they're too high.

As I was writing this post, Eon walked over to Keturah's crib, signed "baby" and then, "sleeping". I asked him if he wanted to sit in my lap and he climbed up. He's doing great and I am so proud of him! I just need to remember to take it one day at a time.


Wednesday, December 15, 2010

Our Christmas Letter

I decided to write a different kind of letter this year. It seemed trivial to write about our achievements when none of them matter for eternity (with the exception of our newest addition, Keturah Joy:) and someone's life hangs in the balance. This is the letter I sent, instead:

Dear Family & Friends,

Merry Christmas! Instead of a traditional Christmas letter, we want to share with you what God has placed on our hearts in hopes that you will partner with us in changing lives.

Earlier this year, I prayed that God would break our hearts with what breaks His. Turns out, there is much that breaks His heart and the pain is almost overwhelming at times.

Most of you have heard us talk of Reece's Rainbow, an adoption ministry focused on finding homes for children with Down syndrome (and other disabilities) in other countries. Here in the US, there is a waiting list of families looking to adopt a child with Down syndrome. (There is also a termination rate of 90% for Down syndrome pregnancies, but that's another topic.) In other countries, when a baby is born with Ds, that child is left at the hospital and then sent to an orphanage, or "baby house", where they are available for international adoption. Once the child reaches the age of 4-5, they are sent to a mental institution (Please, please click on the link and watch. It's difficult to watch, but necessary to fully grasp what we are trying to communicate.) This particular institution is in Serbia, but very similar to those in Ukraine, Bulgaria, and Russia.

Elizabeth is a little girl who enjoyed an early childhood in one of the better orphanages (they actually have toys to play with). She was recently transferred. Please see some cute pics of her and read her story here.

Can you imagine? Can you imagine the fear and confusion she felt when she was transferred? Can you imagine the fear and hunger she feels right now as you are reading this? Can you imagine one of your children experiencing that? We can, and it's breaking our hearts.

"Once our eyes are opened, we can't pretend we don't know what to do. God, who weighs our hearts and keeps our souls, knows what we know, and holds us responsible to act." Prov. 24:12


Patti, a fellow mom of a child with Ds, is determined to see that another little girl, Olga, does not have to experience a similar fate. Olga in nearing transfer. Patti's family doesn't meet the income requirements to adopt, themselves, but she is working to see a Christmas miracle of a fully funded adoption account for Olga. So many families are willing to adopt, but the cost (around $20,000) is prohibitive. If Olga's account is funded, a family will step up to adopt her, to save her from life in a mental institution. When Patti started her efforts to spread the word only 10 days ago, Olga had less than a hundred dollars in her fund. Now, she has over $10,000! We are halfway there!

Visit Patti's blog to learn what the current count is and to find out how to donate. Pray and ask God what He would have you do for the "least of these". Ask Him how He would have you save a life. Be part of a Christmas miracle this year!!!

Please, visit the links I've provided and learn more. Feel free to pepper us with questions, as well! There are currently 147 million orphans in the world today. We cannot save all of them; but, we can save this one!

And the King will answer and say to them, 'Assuredly, I say to you, inasmuch as you did it to one of the least of these My brethren, you did it to Me.' Matthew 25:40

We challenge you to pray, as we did, that God will break your heart with what breaks His this year. Be prepared for Him to rock your world. :)

With much love and gratitude,
Shawn, Tara, Michaela, Elliana, Atalia, Benaiah, Zakkai, Simeon, & Keturah Lakes

Monday, December 6, 2010

The plight of the orphan

This breaks my heart. I can only believe that Jesus is with her and will protect her like we're asking Him to do.

Tuesday, November 23, 2010

At Peace

Perhaps, with postpartum hormones a swirling, I'm a little more emotional than usual. Maybe, because our recent delivery of Keturah was a little scary with a partial placental abrubtion, I'm more sensitive to the preciousness of life. Or maybe it's just that I am so tired of the trite platitudes that women use to justify their decision to kill their babies with Down syndrome. I'm tired of not being able to respond to the ill-informed reasons they give. I'm tired of reacting with compassion and "tolerance". I'm tired of reading that I'm the selfish one for giving my baby life. I'm tired of hearing that my child is "suffering" when clearly he is not.

Yesterday, I read a comment by a mom who terminated her pregnancy for T21. She wrote that her little boy is "at peace". Well, guess what?!? My little boy with T21 is at peace, too! He's at peace when he's sleeping safe and secure in his crib. He's at peace when he's playing trucks and cars with his brothers or wrestling with his dad.
He's at peace when he "holds me" at the end of a long day. He's at peace when he's coloring pictures at the dining room table or eating his favorite dessert. He's at peace as he embraces life at full-throttle. He's lived a full 21 months now, with many years to come...all of them "at peace".

We are blessed that he is not a memory, but a living, breathing, joyful little boy...at peace!

Just writing the above changes my heart to one of compassion for the women I started out so angry at. That's all they have...a memory of some kicks in the womb, a trip to a clinic or a hospital induction, all cloaked in a shroud of fear and grief. Of course they hold steadfast to the platitudes, it's all they have. To face the truth at this point, to have their carefully crafted lies fray even a little, would cause them unbearable pain.

My anger is misplaced. I wish I could see people through the eyes of my Jesus who grieves as I do for the injustices done to those little ones that He created, and yet, who loves and sees with compassion the women who caused the injustices to occur. It's difficult this despising of sin and setting aside pride to embrace the one who sins. I'm not very good at it when anger and bitterness seem so much more satisfying. Pointing the finger is easy; reaching out a hand is decidedly not. Maybe someday, I'll have the opportunity to do the latter. I hope that I'll be willing to do so.


Monday, November 15, 2010

Little Sister



She's here! Eon became a big brother on November 12 with the arrival of little sister, Keturah Joy! We are all smitten and exhausted. :) She is a treasure and Eon is very sweet with her...so far.

Wednesday, November 10, 2010

Big brother soon...

Eon will be a big brother in the next few days, not that he has any idea what's about to hit him. :) For a long time, he's been rubbing my belly and signing "baby", but I wasn't sure he really made a connection. Lately, though, he's been seeing a baby and calling my attention to it, then signing "baby" and rubbing my belly, so maybe he understands more than I think he does.

Over the weekend, I started having severe abdominal pain. While I was having contractions, it did not feel like labor and the pain was too high. I began to suspect a kidney stone (as I have some experience with that). After I was triaged at the hospital, a 2cm stone was found on the renal ultrasound. They decided to induce labor to get the baby out so they could deal with the stone. I was an emotional mess. I was completely unready to have her and was devastated by an induction. Once I wrapped my brain around it, they started Cervadil to soften the cervix and I started contracting regularly a few hours later. Unfortunately, the Cervadil came out when the nurse checked my progress and everything tapered off, so the doctor ordered pitocin.

Early Sunday morning, I got an epidural and my already low blood pressure plummeted. I was very sick and near passing out and it took some intervention to regulate it, again. Early afternoon, with pitocin cranked up and contractions coming 3 minutes apart and hard, my doctor came in and checked me...only to find I had not progressed at all. Baby girl was still flying high, I was undilated, and very posterior. He decided to call it quits...and send me home...after thirteen hours of labor! I did not even know that was a choice.

Monday, I felt like I'd been run over by a truck and was terrified to go through all of that again. Yesterday, I went to my OB appointment to find that I was dilated, much more anterior, and slightly effaced. Yay! Even though the kidney stone has receded back into the kidney, the plan is to induce again Friday morning. Now, I feel ready. :)

I hope Eon is, too.


Friday, November 5, 2010

Gotta be the Down syndrome

This week has been filled with appointments. I will be 39 weeks pregnant, tomorrow, and while everyone else nests by cleaning, I, apparently, nest by taking kids to various appointments. Whew.

I have decided I am wearying of the medical "experts" that have me running to appointments just because Eon has Down syndrome. I have a very good idea of the potential things that can go wrong in little bodies with extra chromosomes. I am starting to resent the fact that I have just been jumping through hoops because "they" tell me to. For example, this week, we went to the audiologist. Why? Because he has Ds and is supposed to get his hearing checked every 6 months, according to the developmental pediatrician at the Ds clinic. I understand why this is the recommendation for the general Ds population. BUT, Eon has only had two ear infections his whole life (many less than his typical sibs at this age), he has great ear passages, he has never failed a hearing test or screen, and he shows no symptoms that would indicate a hearing problem. So, why did I take him? Because "they" told me to! I am feeling like such a sheep! And, I'm tired of the "experts" only seeing Down syndrome when they make these recommendations and not looking at Eon as an individual.

Yesterday, we had speech therapy. I love her. She has seen all my boys and she's great. But, I'm huge, pregnant, hormonal, and exhausted and she was not picking up on that at all. Eon was throwing toys. She asked me if he always did that. No, he doesn't. Just when he's in a tiff about something. I explained that he's been crabby for a week and a half and is getting some new teeth.

She responds with, "Well, not to scare you, but that stubborn streak is pretty common with kids who have Downs." Really?!? Straight to blaming it on Ds? Could we not problem solve that he's a toddler and being a grump? Could we not chalk it up to teething, or not sleeping well, or a cold? Nope. Gotta be Down syndrome! Sigh.

She also took it upon herself to ask if we intend to send him to preschool. I tried to deflect the question with a simple "I don't know, yet", but she wouldn't let it go and started trying to convince me how helpful it would be for him. Again, really?!? Now?!? I have 15-months until that's even an option. I'm having a baby in a week or two. Can't we just focus on the now for now? Yeesh.

Tuesday, November 2, 2010

Buddy Walk

We had a great time on the Indianapolis Buddy Walk and were so blessed by our team of around 45 people! Wow. Here are some pics. I managed to waddle about 1/2 mile of the 2.6 mile walk, but it was fun to watch all the teams go by. It seemed to be a bigger turn-out than last year (which was estimated at 1500 people). As I was sitting and watching, though, I was struck by the number of people that were missing...because of all the women who choose to terminate the pregnancy after discovering their baby has Down syndrome. If only they had given their child a chance, they could've been walking with us, enjoying the day and bursting with pride over their child and the Ds community as a whole. Made me sad. Aside from my melancholy, it turned out to be a good day. Here are some pics of the overcast day.

So tired...and a little chilly.

We had a lot of kids walking with us (and this is not even all of them).

Dad (Shawn), Me, and Eon after the festivities were over and we were worn out.

The boy of the hour with oldest sister Michaela and blond brother Zak behind him.
Not real sure about Grandpa (who just got back into town after 5 months.
See the sea of orange "Simeon's Sidekicks" t-shirts? The walk is along the canal in downtown Indy.
Being held by Aunt Tonya...still not looking thrilled.
Assembling the team. The cute bald man in the middle is Shawn. :) Looking forward to next year!


Tuesday, October 26, 2010

Hope for the Future

My friend, Heidi, has a 37yo. brother-in-law with Down syndrome (her husband, Jason's brother). Her in-laws only had the two boys, and Brian, the one with Ds, lives with his parents in another state.

She brought their kids to the Buddy Walk, last weekend, and started talking about Brian. She told me what a great uncle he is to their boys and what a blessing he is to her. Then she said, "I'm concerned about what happens when his parents pass on."

I was preparing myself to hear her talk about where they might end up placing him or what a burden it would be to care for him, given that they have three young boys, etc.

She pleasantly surprised me by announcing, "There's no question that he will live with us! He's family. I'm just hoping that maybe by then we'll have moved back to his home state so it won't be too much of a transition for him." She went on to express concern that he has a bit of OCD and she's worried that he'll have a difficult time adjusting to their family life.

She has very valid concerns, but what shocked me, given our culture, was that she just expected to take on the challenge! She was very adamant about their love and concern for Brian and how important he is to their family. And she's an in-law!!!

What a blessing! I hope and pray that my kids will find spouses that love their brother as much as they do, too! It just gave me another burst of hope for the future.

Saturday, October 23, 2010

Youch! Here's a post with a necessary punch.

Fellow blogging mom of many, including one with Down syndrome, Susanna, posted this on her blog the other day. I was, and still am, incredibly convicted. She is absolutely correct. I have no right to nurse an offense or even become offended in the first place. Words I will ponder for years to come.

Friday, October 15, 2010

Fun at the pumpkin patch

I'm 36 weeks pregnant, so we walk at about the same pace. :)
Hmmmm. Is this pumpkin bigger than my belly?
Why can't I get this one?

I liked the ones over there better.

Tuesday, September 28, 2010

Walking, and signing, and speaking, oh my!

Eon has been taking steps for months, now, and I kept waiting for him to just "take off" walking. It's funny to me that it hasn't happened that way at all. Gradually, he has just taken more and more steps until, now, he walks more than he crawls. He's still unstable and falls a lot, but he's very determined and always just stands back up and keeps plugging along. Very cute! It still surprises me when I catch sight of him out of the corner of my eye and he's walking by. He'll be 20-months-old tomorrow, so it's a bit earlier than I expected, too.

I've mentioned before his tendency to use signs and words for awhile and then just kind of lose them. It drives me crazy. I've been encouraged by other parents that they will come back and we're finally seeing that it's true. He hasn't used the sign for "daddy" for the longest time. Sunday, he and I stayed home from church as he'd been vomiting in the middle of the night (fun, fun). He was sitting on my bed with me watching videos on the laptop, when he reached over and patted me to get my attention. Then, he signed, "Daddy", and looked to Shawn's side of the bed. I responded, "Daddy's at church." He then waved "bye-bye" and went back to watching his video. I was thrilled! That was the first abstract communication that we've had...something beyond his wants and needs.

He's starting to do that more and more. The other day, his 3yo brother, Zak, was yelling at him for wrecking up his train track. Eon scrunched up his face and signed, "Stop!" Cracked me up! The one that really made me laugh was when I was hollering up the stairs for Ben. Eon walked over the the baby gate, stretched his arm up the stairs, and started signing "Ben" real emphatically, like he was yelling for him, too! LOL!

He uses some words or word approximations, too. My favorite new one is "up". He used to just whisper the "p" sound for that. Now, he loudly says, "glup-a-glup-a-glup-a" when he wants up. I don't know if that's what he thinks we sound like, but I think it's too cute.

Friday, September 24, 2010

Community

I've been thinking a lot about community, lately. Our Buddy Walk for Down syndrome is coming up in a month. I really want to have a big team. I have visions of a mass of Simeon's Sidekicks all in matching t-shirts smiling and enjoying the day together. I was very disappointed when I learned of a few scheduling conflicts that day which could (and probably will) impact the size of our team...like, over-the-top disappointed.

I had to do some soul-searching to figure out why this is so important to me. There is the usual (and acceptable) desire to expose more people to the beauty of Down syndrome. There's the desire to get more people to advocate for our kids. And then there is the desire to have more people enter our world, to really see what our life has come to be about.

I have to be honest with myself and admit that part of it is this intense need to have Eon be beyond accepted and actually celebrated...to be seen and known for who he really is. I'm sure there is a selfish need for me to be accepted, too.

But, I want to go back to my "have more people enter our world" reason. Our world. I want to invite people into our world, but I realize that I am very reluctant to enter theirs. Other people in our circle have walks for things that are important to them, but I never make an effort to participate. They have children with various diagnoses that I have never bothered to learn much about. Their kids are involved in all kinds of activities that I've never shown an interest in.

My friend, Nicki, is my new hero. She brought her kids to the Buddy Walk with us last year (When we totally misnamed our team, Simeon's Trailblazers, only to be so far behind we had to take a shortcut to catch up). This year, she was asking me when the Buddy Walk was a few months ago to make sure she got it on her calendar and now, she has her own fundraising page for it. I have been tremendously blessed and humbled by her enthusiasm.

Nicki has a huge sense of community that I am lacking. When the youth at church have any kind of game or performance, she makes an effort to be there. This inclination to look beyond "her world" has really caught my attention. What better way to foster community than to go beyond inviting people to join my world and attempt to join theirs, too?

I'm learning much from her. The other day on facebook, a mutual friend posted that her young son didn't get the part in the Christmas play he wanted and was disappointed, even though he still got a part. My thought was, "Oh, bummer." Nicki responded, "When and where? Because our family would love to be there." Because of her inspiration, I echoed the sentiment and am looking forward to it.

I do hope people will join our team. I'm sure it will be a great day! But I am also looking for ways to enter the world of those around me.

Saturday, September 18, 2010

The Future

As a busy mom of many, I have many preferences I don't often indulge in. For example, I prefer gourmet coffee and cheesecake at a quiet place with leather couches, but I usually end up with chocolate softserve at the walk-up place near the creek the kids love. I prefer downtown hotels with 5-star amenities, but often succumb to the great outdoors in our tiny camper. I prefer live theater and concerts, but am often found at the $1 movie place with the sticky floor watching the not-so-latest kid flick.

For most moms, substituting kid-friendly entertainment for our own preferences is just part of being a mom. Most moms know that this season of life is only temporary. Someday, their nest will be empty and they can return to the things they enjoy. They may long for the day when quiet coffee and theater tickets are the norm, but they know it's coming.

The moms of kids with special needs have no such assurance. While we are doing everything we can to ensure our child's future independence, we know that there are no guarantees. Our nests may never empty. We are possibly on a lifelong parenting journey without an earthly end.

The more I think about this, the less certain I am that it's a negative thing. I've grown to really like chocolate softserve, $1 movies, and (gasp!) even camping! But more than that is the complete realization that my life is not my own. As a follower of Christ, I have given up those rights. Any plans I have for the future are just a vapor and can vanish at any moment. My desire should be to simply do what He's placed right in front of me to do.

I have always struggled with what I call "when we, then we". For example, when we have this baby, then we can start the new housekeeping plan. When we have mostly older kids, then we can adopt. When we have an empty nest, then we can travel more. Do you see how this can be a trap? Always longing for the future, but never quite content in the here and now?

Having Eon in our lives is forcing me to hold my plans more loosely, to look to the future with anticipation instead of certainty, and to enjoy my reality as it is right now. It may not be cheesecake and coffee, but I'm making the most of it!

Wednesday, September 15, 2010

Deciding Not to Screen for Down Syndrome

Deciding Not to Screen for Down Syndrome
This is an excellent article that succinctly explains my reasons for declining genetic screenings this pregnancy. Unfortunately, the comments took their predictable route. Sigh. I've blogged about this phenomenon before. It's disheartening to see how ignorant and angry the world continues to be.

Wednesday, September 8, 2010

Preschool?

I try not to buck the system too much, really. I am a homeschool mom, though, so that is an area where we are not following the norm. Of course, having seven kids isn't exactly normal, either. For that matter, neither is encouraging one's husband to leave his steady job of 15 years with great benefits to start his own business. Hmmmmm. Maybe I am a bit of a rebel.

Anyway, reading so many blogs and so many posts about sending our 3-year-olds to preschool, many of them on a bus, has caused me to pause and ponder.

Is this really the best thing for Eon?

Who decided that it is? I think I need to see some research to back it up. I know that it will be easier to get him therapies if he is in preschool and I've heard some wonderful things about the program in our area, but, I've heard those things from people who expect all their children to attend public school, anyway.

In all the posts and musings about this, the options revolve around which type of preschool, how many days, or what type of transportation to utilize. I have not read anyone question even attending preschool.

I suppose, since he's only 19-months, I have some time to explore this issue, but time seems to be flying by at an alarming rate. If anyone has any research or input on this, I would love to hear it!

Tuesday, August 31, 2010

So now I wonder...

When we found out we were pregnant this time around, there was no question that we would skip the prenatal screenings. We knew that anything screened for would be visible on our level 2 ultrasound, except Down syndrome. There were no markers for Down syndrome on the ultrasound and everything measured exactly as it should. Plenty of babies with Down syndrome are born without any markers on the level 2 ultrasound, so that does not mean that she is not sporting an extra chromosome, but odds are good that she has the usual number.

I had to wrap my brain around the possibility of a typical baby this time around. I admit that Eon, with his phenomenal sleeping schedule and laid back personality, completely spoiled us. I remember well the infancies of my typical kids with their unexplained crying jags and demanding personalities. Seems like a lot of work to me.

As a family, we enjoy Eon so much and delight in everything that he is. I worry now that we will not have the same bond with his little sister, that we will miss all she has to offer because of our complete devotion to her brother. My head knows that it is unfounded, but my heart is not so easily convinced.

So I wonder, will she have Down syndrome, too? Will she be healthy? Will we instantly bond? Will we accept her and delight in who she is? Time will tell, but these are the things I pray about.

Monday, August 23, 2010

Rolling Around In My Head: The People Who 'ARE'

Rolling Around In My Head: The People Who 'ARE': "It's in the press again. I search to find out the context of the word. I see debates all over the web, people bemoaning the 'politically c..."

I found this post to be a must-read...humbling and brilliant. Please, please...take the time.

Wednesday, August 18, 2010

SMO Guilt

SMOs (small ankle braces designed to provide support and proprioceptive input) have been the bane of my existence for several months. My life is crazy. It is summer and all the kids stay barefoot, donning flip-flops only if we leave the house. Putting socks, tennis shoes, and SMOs on Eon first thing in the morning and again after nap time was not working for me. I kept trying to find a way to make it work, but mostly I just lived with nagging guilt that he wasn't wearing them as much as he should.

Then, I began to notice that, without them, he was standing independently and even taking steps. With them, he would barely pull to stand and cruise. He spent a great deal of time pulling at the straps of his shoes trying to take them off. I felt like they were interfering with his independence and mobility.

Remembering that the PT was uncertain initially if he even needed them, I decided to approach her and confess my negligence in this area. When she showed up last week, he was barefoot. I told her all I just shared with you. She agreed with me that we don't want to slow him down and that we can add them back in once ambulation becomes his primary mode of mobility. I was thrilled and amazingly relieved! It's the first time I've bucked the system, so to speak. (Well, except for when I d/c'd OT, but I am an OT, so that shouldn't count...right?)

This week, we met at the park for PT and she was amazed with all he could do. He climbed the stairs and she worked with him on coming down (not so great at that, yet:), he climbed the slide, took a step or two in the mulch, stood independently for over a minute several times, and took several steps in a row on the pavement. He was wearing his shoes, but no SMOs. I think he enjoyed showing off! He also learned the word "hot" from where the sun was shining on the equipment and used it repeatedly! He did so much more at the park that we're meeting there next week, too.

Oh! She was letting him rest on her lap in the shade for a minute and he started signing "play". That's the first time he's used that sign without prompting. That was our added bonus for the day! :)

Monday, August 9, 2010

God Wink

Last week, I read a post by Erin about a "God wink" she experienced, a moment that God ordained to show her she's not alone and it's going to be okay. I read her post with a heavy heart. I was feeling down about Down syndrome and sinking into a giant pity party.

Later that day, I took the kidlets to a McDonalds with a playland. Before we left, I struggled to put Eon's SMOs (ankle braces) and shoes on as he squirmed and kicked. Once there, I got him a cup of water (unmeasured) and tried to guess how much thickener to mix it with to prevent aspiration. I've learned that he does better eating his cheeseburger if I just offer it to him to take bites from, versus cutting it up. It takes longer, though, so the other kids ran off to play.

As we sat there, I looked around at the other families. Then I saw her. She was about 2 1/2, but I'm purely guessing at that because she was tiny. She had soft blond hair and cute little glasses. Her mom was holding her rather awkwardly and feeding her lunch...a jar of stage 2 baby food. It was obvious that she had cerebral palsy and her limitations were significant. Her hair was rubbed off on the back of her head like a baby's from lying or semi-sitting in a stroller.

I pondered the scene for awhile. I have no doubt that the mom delights in her daughter every bit as much as I delight in Eon. Her three older siblings obviously adored her, too. Yet, I couldn't help but realize that this mom has significantly more work, appointments, and uncertainty in her life with her daughter, than I do with Eon. At this point, Eon was climbing through the playland with Ellie close on his heels. He was shrieking with laughter as he tried to stay out of her reach. The little girl was smiling, too, as her siblings ran up to kiss and tickle her and include her in their play.

Suddenly, my perspective was changed. I felt grateful. Not because I don't have that woman's life, but because I get to have mine...the one that was chosen for me.

On the way home, I realized that God had winked at me, too.

Thursday, August 5, 2010

He's on to something!

A few weeks ago, I wrote a post entitled "I See Down Syndrome". It has always baffled me that other moms seem to forget about it in their children, but I never do. A few days ago, Faith's mom, Stephanie, wrote a great post entitled "Sometimes I Forget". I admit to feeling a tad jealous of her after reading it. I read it to my husband and he agreed with Stephanie.

"I hardly think about it and when I do, I'm almost surprised to realize he has Down syndrome," he said.

Really?!? What is wrong with me?

Then Shawn told me he thinks it's because of my medical background. I'm an OT. It's what I do, but it's also part of who I am. He pointed out that I've always been aware of my friends' kids' development. I'm the one who "diagnoses" kids when I work in the church nursery. I'm the one who isn't afraid to recommend early intervention to a mom when I notice her child is lagging behind. It's just what I do. I've been trained to "see" these things.

He seemed to think that it's no different from him, as a professional handyman, noticing needed house repairs when we visit someone. (Hmmmm. That doesn't seem to translate to our own house...;)

I think he's on to something! After starting to question my acceptance of Ds and even Eon himself, I am breathing a deep sigh of relief. Maybe I'm not as warped as I thought!

Saturday, July 31, 2010

Odds and Ends

We had our first Down syndrome play date, yesterday! I was so excited to get to spend time with Laura and her adorable little girl, Lilly! They are former neighbors of our pastor's family and his wife, Julie, graciously invited us all over so we could connect. Lilly turned 2yo yesterday, and is just so cute! She's been walking since she was 14 mos. and is so fast. She's also the busiest little thing I've ever seen! I think she opened every available drawer and cabinet. I jokingly told Eon that I'm sorry I ever pushed for him to start walking! LOL!

Speaking of walking, our little man turned 18 mos. on Thursday and celebrated the day by taking his first steps! After standing independently in the middle of the room for months, we were all excited when he took it a "step further", so to speak. Unfortunately, I started clapping and cheering just as he fell, so he decided that falling was the thing we were celebrating. For the rest of the evening, he proceeded to stand up, fall, and clap for himself! LOL! Timing is everything.

I've had several people ask how the pregnancy is going. I'm 25 weeks and feeling okay.
We skipped all screenings except the level 2 u/s this time around. My reasoning was that of all the things they screen for (with the exception of CF), T21 is the only thing that doesn't have definitive markers readily seen on a level 2 ultrasound. We are not worried about this little one having Down syndrome, so it really made no sense to me to go through the screenings when anything else would be found on the u/s. That being said, I went into that u/s with much fear. I was terrified that they would find something fatal! They did not. :) Everything looked great and within normal limits. I was very relieved. I was quite excited to discover that our tie breaker is a little girl, too! After three boys, I am very ready for pink again. :)

Some pregnancies are easier than others and this is not one of the easy ones. I've experienced near fainting due to blood pressure dips, almost constant itching that has prompted some bloodwork for possible liver issues, and a strained back that left me bedridden for a few days. I'm thankful to know that this is just a temporary inconvenience for an eternal blessing, though! We are anxious to meet this little cutie and see what she brings to the table. :)

Monday, July 26, 2010

I see Down syndrome

When Eon was a few weeks old, I asked a question on Babycenter's Ds board: "When will I stop "seeing" Down syndrome?" Most of the responses were among the vein of "when his personality develops", "when he starts smiling", etc. I noticed Down syndrome every time I looked at him. I think I was looking for it in his features; some indication that it was actually part of him.

Our son, Zak, has blond hair. It is really, really, really blond. I see it every time
I look at him. I can tell when he's been in the sun because it practically glows. I notice if it seems a tad long or if Daddy missed a spot when he buzzed him. It is very much a part of his cool "surfer-dude" personality and I love it about him.

Likewise, I see Down syndrome every time I look at Eon. I can tell when he's tired because his features seem more pronounced. I look at him with wonder that he can look so much like his siblings, and yet, also like thousands of kids across the planet that have Down syndrome, too. I look at him with joy that he is special and different. Sometimes, I look at him with concern and wonder if there is more I should be doing for him. But, I never look at him and fail to see Down syndrome. It is part of his charm and I love it about him.

Friday, July 23, 2010

His cheering section

Eon has been standing from the floor independently for awhile. He's even picking things up from the floor while standing and unfastening his shoes. However, he only does it at home. I think he's too busy checking out the sights when we go somewhere.

That changed at VBS the other night, however. He was crawling around the church foyer playing with some kids while I was talking to some friends. I heard someone say, "Wow! Look at Eon." I glanced over and saw him standing in the middle of the room with a big grin on his face. Several other people noticed and exclaimed over him. I even had a quite a few people tell me about it later. They were all grinning and obviously excited for him.

It occurred to me that all of his typical peers started walking in the last few months and no one seemed to notice. It was a complete non-event to everyone except the parents. Eon stands once in public and causes quite a stir. Everyone notices and cheers.

We are blessed to be part of such a caring group of people who love our son and celebrate his abilities with us!

Thursday, July 22, 2010

My chip

I learned something this week. I have a chip on my shoulder. When it comes to Down syndrome, I am starting to expect the worst from people. It started a few weeks ago when I was discussing Eon's transition into the toddler room at church with the coordinator, who is also a good friend. I thought it would be helpful to have our oldest daughters take turns being in there with him to assist him if needed (mostly because he doesn't do well without "his people" around).

Thinking aloud, my friend thought through potential issues with this arrangement and I became ridiculously defensive. I erroneously assumed it was turning into a fight for my son's "rights" and became loaded for bear. Turned out to be a complete non-issue.

This week, I'm working in the nursery for VBS (vacation Bible school). There is a petite little girl in there who is 2yo. Eon tends to crawl like a boy on a mission with his head down and really fast. The first night, he almost ran into the little girl and she freaked. From then on, she'd whimper when he got too close and point him out when he made too much noise. My assumption was that she was scared of him because he's different. It made me sad.

Fast forward to the next night. A typical little girl, Eon's age, got too close to the first girl and she freaked again. After that, anytime that girl got too close, she whimpered. She forgot all about her fear of Eon. I realized I just assumed the problem was Down syndrome, not that the little girl has space issues.

I'm the one with issues. I have to lose this attitude I've begun to carry around! There is nothing wrong with being an advocate, but not to the point that I alienate those around us. What does that communicate to people, if I'm constantly expecting them to treat him differently? I think it just showcases his differences and certainly doesn't convey the intended message that he's more alike than different.

Thursday, July 8, 2010

The Day is Coming

I have not been upset or saddened by Eon's developmental delays. In fact, I've relished the extra time we have to enjoy all his stages and phases. I thought I was enjoying them because he was to be our last, but the knowledge that his baby sister will be joining us in November hasn't changed anything. Unfortunately, he seems to be growing up at an alarming rate.

I find myself in near panic attacks about how fast he's growing. I finally realized that I want to keep him little forever and why I feel that way.

He gets attention where ever we go. It's only positive attention at this stage. People acknowledge his engaging personality and comment on how cute he is. Even when he's being shy and stubborn, people smile at him.

Unfortunately, I know the day is coming when he will continue to attract attention, but it will be because he's different, not because he's cute. My heart breaks to think of that day. The positive attention will invariably turn negative when he loses his childhood charm. We live in an ugly world. I'm certain that he will still receive some smiles from experienced or kind-hearted people, but other people will look away, uncomfortable by his presence. Some will stare and others may say hateful things.

What he will not have the luxury of is anonymity. He will not be unnoticed.

I've experienced that a little in the last few years. We have a large family. If we go somewhere together, people notice. I've learned to plant a smile on my face and let them stare (and count). If everyone looks cute and is well-behaved, I enjoy the extra attention. If we're having a "Beverly Hillbillies" kind of day, not so much.

When I want my anonymity back, I go somewhere alone. If Eon wants his, he'll have no recourse.

And so, I want to snuggle him and hold him close. I want to listen to him giggle as I tickle him and raspberry his fat belly. I want him to stay small and safe, shielded by his cuteness and protected from that day.

Processing

Simeon is 17 months-old and I am just starting to see some of the processing differences in him. Rather than just being delayed or behind on milestones, he takes a little longer than his typical peers to process information. An example of this is his tendency to take a nose dive off the bed if not watched closely. He stands and cruises independently, but he has yet to figure out how to safely get off the bed. I've been providing verbal, visual, and tactile cues for this task for months, but he insists that head first is the only way to fall....and fall he does on occasion. Thankfully, other than a bruise or two, he has escaped these incidences relatively unharmed.

Even with his slower processing, he often surprises me. I've been playing the "where's your nose" game with him for a few weeks, to no avail. He simply looks at me blankly whenever I ask. But, the other day, I asked a different question: "Where's your head?" Immediately, he smiled really big and patted his head. I have no idea where he learned that. Silly mom's just been asking the wrong question all this time! :)

Monday, July 5, 2010

Excellent article on "More"

I found this article to be very helpful (in an abstract sort of way) in understanding intellectual disability.

More

Interested to see what our "more" looks like as Eon gets older. I could relate to much of what she had to say in regards to our other son without intellectual disability. Sometimes our world is difficult to describe to those around us.

Saturday, July 3, 2010

Water Baby



Eon had a great time playing in the pool on our vacation last week!

Wednesday, June 9, 2010

He's not the only one!

Shawn and I decided to join a nearby gym (nothing like deciding to finally exercise while pregnant). As we were touring, we dropped the kids off in the babysitting area. When I scanned the room, I was so excited to see another little boy about Eon's age with Down syndrome. He was so cute! I asked the attendant about him and she said she thinks he's the youngest of four and that he's 18 mos.

Later, when we picked the kids up, she told me that she pointed me out to the mom who didn't want to interrupt when we were signing up. I hope she sees me there, again, and "makes contact". :) I still think we need a secret handshake or something. Ellie told me that when she put Eon down, he crawled right over to him and they played together.

I know it's silly to get so excited over a chance encounter, but I just never see kids his age with Ds unless we are at a Ds event. It was a momentous occasion. :) I think the attendant was as excited about it as I was.

Tuesday, June 1, 2010

At least with Down syndrome...

As this blog is primarily about our life with Simeon, I don't talk much about our other kids. But it's another kid of mine that prompted this post. Ben is 4 (will be 5 in August). He is tall and lanky with sandy colored hair and a dimple in his left cheek. He is my sweet, first born son. The first time he brought me a bouquet of dandelions, I thought my heart would melt right there. I am forever blessed to be his mom.

Ben is also my most challenging child. His was my most difficult birth, most difficult postpartum period (complete with postpartum depression), most difficult nursing relationship, etc., so it makes sense that he is my most difficult child. There is some trauma in his history and I am certain that many of his behaviors stem from that.

He has mild speech apraxia, some sensory issues, some vague learning issues, and who knows what else. We have an appointment with a psychologist in July to try to identify his issues and get the help we need. In the meantime, he has outbursts...moments of rage in which he seems to lose all control. He screams, kicks, throws things, bites, pinches, etc. It is exhausting for both of us and I am at a loss as to how to help him. Some days, I parent him with love, grace, and understanding; some days, with impatience, frustration, and anger. Typical parenting doesn't work for him.


I find it so ironic that mothers are devastated to get the diagnosis of Down syndrome for their baby, when I've found that typically chromosomed kids can be so much more challenging. It makes me so much more aware of the benefits of a Down syndrome diagnosis:
  • At least with Down syndrome, we have an entire community to ask questions of. Someone in my network somewhere will have advice for me when a new situation with Eon pops up.
  • At least with Down syndrome, we get an inkling of some of the challenges we may face at or before birth.
  • At least with Down syndrome, people visually recognize that this is a child with special needs. When your typical looking child has a meltdown in the store, people blame you and your poor parenting. (If you happen to have a lot of children, they may blame that, too.)
  • At least with Down syndrome, there is the knowledge that this child is this way by design and not some failure on your part.
As with all of our children, I am grateful that I can rely on the wisdom of God in parenting Ben. He is a handful, but he is worth it.

Sunday, May 30, 2010

The teenie-weenie

Just a warning, but this post contains way too much information. I'm hoping some of you other moms of boys with Ds can help me. My little guy has a teenie-weenie turtle penis. It is small and constantly hidden by a fat pad in his groin. I'm concerned that when we eventually start potty training, it is going to be a big problem. Plus, it's kind of awkward that it doesn't resemble his brothers. They, at 4 and 3, are totally into all things gross and private and have taken note that Eon's is just not right.

I have repeatedly asked our beloved pediatrician about it and he basically blows me off every time. (I love the man, but he has a stubborn streak.) Does anyone have any experience with this? Which doctor should I address this with? He has an appointment at the Ds clinic in July and an appointment with his endocrinologist in the fall.

Thursday, May 20, 2010

The well-meaning comment

At only 15 mos., Eon has yet to face ridicule or discrimination because of Down syndrome. I don't doubt those moments will come, but I try not to dwell on them. I do know other moms have had to put up with negativity and insensitive comments related to their little one's diagnosis, but we have escaped relatively unscathed.

Shawn thinks it's because people are afraid of me. That might be the case. I have a tendency to speak my mind. I get it from my mom, although she is 6' tall and slightly more intimidating.

What does often catch me off guard is when some well-meaning person decides to "encourage" me by saying some inane thing about Down syndrome or children with special needs. Recently, a gentleman who had been watching Eon really get into the worship service at church, approached me to tell me that even though Eon is not the "original design", he is still God's creation or something equally ridiculous.

Honestly, it kind of ticked me off. It was like he had just had the revelation that my son is worthy of life and felt the need to tell me. And, he said it like I should be delighted with this new tidbit of information. Really?!? Do people think I sit around depressed because I have this beautiful toddler who has an extra chromosome? How many times do I have to testify publicly that Down syndrome has blessed our lives, that Eon is exactly who God made him to be, that we couldn't be more in love with or prouder of our son?

Of all the experiences like this (and they always happen from church people...why is that?), my favorite was the lady who told us soon after he was born, "God told me to tell you that he does have an extra chromosome...an extra chromosome of love!" Still cracks us up and we say that all the time around here just for a giggle. :)

Goodness. If I get this worked up over well-meaning comments, how will I react when someone really is a jerk? Let's just chalk it up to pregnancy hormones, shall we? :)

Monday, May 10, 2010

MIA

I have been MIA in bloggy land for the last several weeks. It's probably hard to imagine since I have birthed six children, but I am not a fan of pregnancy. Those early weeks are difficult on everyone in the family. So, I have spent much of my time away hugging the toilet and fighting off the frequent migraines that accompany this blessed condition. I wish, at 13 weeks, I could assure you that I am well past that, but I can't. I keep thinking I should be feeling better and I am, but still not great.

I was truly spoiled in my pregnancy with Eon. I felt great the whole time. After going overdue with all of his siblings, I was amazed and blessed when he even gave me the gift of showing up a week early. He's such a great kid! :)

Speaking of Eon, one of my biggest fears for him is that he will be nonverbal. It is really important to me that he become an effective communicator. Probably because this family is full of gabbers and I want him to fit in, I'm worried that speech will never come for him. His oldest brother, Ben, has mild speech apraxia and two of his other siblings also needed EI for speech therapy, so it's kind of at the front of my brain. His speech therapist remains unconcerned and I wish I could adopt her attitude.

Because of that, whenever he learns a new sign, I am thrilled! But, right now, I am even more thrilled because, at 15 mos., he has added two spoken words to his "momma" and "dada" repertoire! He started signing "dog" a while ago and then started saying, "goggie" with it a few weeks ago. His newest addition is "book" which sounds more like "ook". He is very consistent with both of them. Earlier, he was out of my line of sight, but I heard him repeating "ook, ook" and I knew he must be looking at one. Sure enough, he had found his sister's book of sea creatures.

I know he will be behind in language development, but it gives me hope that one day, we will have meaningful conversations with this kid!

In other news, we should be receiving his SMOs early next week. The PT is confident that he will be walking behind a push toy shortly. I'm unconvinced, but we'll see. He is starting to cruise around furniture, but it's a little awkward and slow. He's also starting to let go after pulling up to stand and pause in midair before crashing to his diapered bottom. Makes me cringe, but he thinks it's great fun.

We have taught him to rely on a bedtime routine that is just ridiculous and it's beyond time to teach him to fall asleep in his crib, but I don't have the stomach for it. Isn't that sad? Any words of wisdom or encouragement on that front would be greatly appreciated.

Now, it's time to sign off here so I can spend some time catching up on the many blogs/lives I have been neglecting in my hiatus.


Friday, April 9, 2010

SURPRISE!

Shortly after Eon was born, I discovered Reece's Rainbow and it became my passion to see those precious children with Down syndrome rescued from almost certain death. It was my hope that, one day, we would join the amazing families that are bringing them home, and adopt one of our own. We were moving to that end. I felt as if both the passion and the desire were from God. I was excited that we would finally do something "big" for Him.

So, imagine my surprise when I discovered I was pregnant. "This cannot be happening," I thought. We had the perfect, albeit large, package - three bio girls and three bio boys. The tie-breaker was supposed to be a chosen, adopted child. Honestly, six seems nice and compact to me. Seven just seems Duggar-kind of crazy! I sobbed the entire day after seeing the pink line. This was not the plan!

I wallowed in misery and disbelief for days. I'm not a big fan of pregnancy. For the previous seven months, I had not been pregnant or nursing for the first time in almost seven years. I discovered that I like myself without all those swirling hormones. So certain was I that we were finished with infancy, I discarded all things infant-related.

I remember telling a friend, "It is so hard for me when I'm all set to zig and God says, 'Zag'."

A few weeks ago at church our pastor was talking about following Jesus. He said that we need to learn to follow Jesus before we can truly serve Him....that sometimes we jump in and start serving God, and that it's possible to do that without actually following Jesus.

And then it hit me: I was irritated with God for interrupting my plans to serve Him.

I realized that I had a decision to make. I could either continue in my misery and believe the lie that this pregnancy was a mistake. OR I could choose to follow Jesus. I could believe the truth that this child was chosen by God, that his/her days were planned at the creation of the world, and that he/she is a blessing.

I chose the latter, and He's slowly changing my heart.

Someday, maybe we will adopt. But for now, we are rejoicing in new life, swallowing our pride, and looking Duggar-kind of crazy. :)


Friday, March 26, 2010

Doubt

doubt

(It starts as a whisper, a tiny niggling in the back of my brain.)

Recently, I posted a comment on a site stating that I am proud of my son's designer genes, that Down syndrome is part of his charm, and that his chromosomal enhancement is actually kind of cool. The responses were less than stellar. "Is this a joke?!" "A birth defect isn't cool!" "A genetic accident isn't something to be celebrated...it's a tragedy." "That's like saying leukemia or other diseases are cool."

Birth defect......Genetic accident........Tragedy......Disease

Doubt

(A little louder now, more insistent, it pushes forward toward the front of my conscious mind.)

Eon just got over being sick. He was sicker than the rest of us......again. Sometimes, I think he's doing phenomenally well, but, sometimes, I notice things like him staring at his hands in endless fascination or seeming not to recognize his own name and I wonder. Is he fully there? How much is he really getting? How far can he go? What is his purpose?

Sicker.......Staring........Purpose

Doubt

(Starting to sink a little into the abyss of fear.)


Can I do this? I feel inadequate. The thought of being the mom of a kid with special needs is overwhelming at times. Am I doing enough? I feel like he just hangs out with us most of the time. I rarely do structured therapy with him. We're not doing flashcards or an early reading program. We play with him and include him in our lives, but is that really all he needs? Am I strong enough to deal with all the therapies, appointments, and advocacy?

Inadequate.......Not doing......Overwhelming.......Enough


DOUBT

("Help me, Lord," I whisper.)

(and then...)

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. Psalm 139:13-16

So God created man in his own image, in the image of God he created him; Genesis 1:27


You created......Wonderfully made.........Image of God


truth

(Yes, he is fearfully and wonderfully made. He was created in your image. You planned his days long before he was born.)


For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

The Lord will fulfill His purpose for me; Psalm 138:8


Future.......Hope.......Purpose

Truth

(Of course! You, oh God, have plans and a purpose for both of us. How do I fail to see it sometimes?)


I can do everything through Him who gives me strength. Philippians 4:13

But He said to me, "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. 2 Corinthians 12:9

Strength......Grace......PowerItalic

TRUTH

(You are my source. You are my strength and my shield. I can do this through you and you alone. I am not strong enough, but I don't have to be. As always, you are.)




Tuesday, March 16, 2010

Blech!

I have been MIA in blog land for the last week as we were attacked by a tummy bug. Attacked as in every. single. one. of. us. It started exactly a week ago with the 2yo and has run through the entire family. The worst part is that it lasted for days for each person, with the exception of Ben. We joke that Ben has a compulsion for hand sanitizer but, as he is the only one who was down for a mere 24 hours, I think maybe he's onto something there. :)

Eon, though started vomiting Thursday night, seemed to get better by Sunday, was given formula and started vomiting again. The nurse at the ped's office had told me it was safe to reintroduce formula after 24hrs from the last episode, as long as he was keeping down other liquids and food...which he was. Yesterday, he slept most of the day, just waking up to whine and drink pedialyte. :( I finally gave him Tylenol and some stage 2 pears in the evening and he was much happier.

After sleeping fourteen hours last night, he was his old self this morning! I was so excited. He seemed hungry and, since it had been 36 hours since his last vomiting episode, I gave him formula. DOH! An hour and a half later, he started with projectile vomiting AGAIN! Ugh. So we're back to applesauce-thickened Pedialyte today. We were on our way to the Dollar Tree, so I'm glad we didn't make it out the door! Can you imagine me at the store with six kids, one of them projectile vomiting in the aisle? Ack!

My biggest concern is that he might be aspirating when he vomits. :( He's sounding very gurgly afterward and Shawn thinks his breathing looks a tad labored this afternoon. We're watching him closely.

I have not yet found a good way to catch projectile vomit from a 13 month-old, except with whatever clothing I happen to be wearing. :) Sunday, I knew it was coming so I held a bowl up to him. It missed the bowl completely and shot all over me! Hilarious! (I even found it funny at the time!) I've done more laundry in the last week than I have in the last six months. Shawn says the last time we had clean sheets every day.....we had to tip the maid.

Sunday, March 7, 2010

The Nursery

Eon is not a fan of the church nursery. He has some seperation anxiety and spending the morning with a bunch of strange adults, and even stranger kids, is just not his cup of apple juice. Maybe the problem is that we had a run on girls in our church around the time Eon was born and he is the only boy that's nursery age. Today our friend, Doug, was working in the nursery, so I thought we'd give it a whirl. My other two boys generally hated the nursery, too, but they loved Doug.

Actually, he did last a record amount of time (for him) in there this morning. Apparently, I forgot to mention to Doug's wife, Teresa, that Eon is now crawling and pulling up to stand. Eon, being intimidated by all those girls, I'm sure, just sat and played with toys for almost an hour without moving. Toward the end of the hour, he started to fuss a bit and Teresa was concerned that his back was getting tired. Thinking he couldn't reposition himself, she laid him down. He promptly flipped over and sat up. Hmmmm. Then Doug did the unthinkable. He put Eon in the exersaucer. I heard the reaction to that from my seat downstairs in the sanctuary.

After I went and rescued him, I decided that Eon must've been listening to his PT all those times when she disapproved of exersaucers for kids like him. :)

Friday, March 5, 2010

Simple

I'm a simple girl. I have a simple belief system, a simple lifestyle, and a simple worldview. That's not to say that I'm simplistic, mind you, just uncomplicated.


I believe, for example, that those who are unwilling to accept challenges with a child, should not have unprotected sex. I don't understand saying, out of one side of your mouth, that people with Down syndrome are "more alike than different" and that your life with your child is "normal", and, out of the other side, that you will pursue IVF with embryo screening to make sure you don't get another one with Ds. It's ludicrous to me. It doesn't add up.

But, again, I'm a simple girl. Never could figure out the new math.