Monologue to God

I want to take a minute to publicly thank God for 2009. I hope you don't mind (and, if you're not of the same mindset...I hope it won't send you running to the hills. :)

I praise you, Lord, for increasing my faith.....for showing me that even when all is stripped away, You are here.......and you are enough.

I thank you for my sweet Simeon. Thank you for allowing instant/intense love for a little boy who continues to change our hearts and lives in so many ways. Thank you for introducing us to the amazing and wonderful club of Down syndrome and for giving us a blogging family of parents on the same road.

When Shawn decided to quit his job and become self-employed, we never dreamed we would be walking the Ds road at the same time. It could've been such a disaster, but You made him successful......always supplying job after job and using his flexible schedule for the benefit of our family. You knew that with heart surgery, extra appointments, and therapies, there was no way we would've survived (let alone thrived) with his former schedule and You put this on his heart for this reason. Your timing, as always, was perfect.

Although I'm not through it and have no complete resolution, I'm grateful that You love me enough to challenge my theology. You have given me the desire to question everything I thought I knew, knowing that I would eventually land at truth.....that You are real and that You care......and that all the extraneous, meaningless crap would be filtered out.

Thank you, God, for my family, for allowing me to be a sahm for the first time, and for teaching me to enjoy the chaos.

I know I complain about this often, but I really do thank you for making me the kind of person who wears her heart on her sleeve with a complete inability to live, or even vacation, behind any kind of mask.

You are good. While the circumstances were hard, I know that I'll remember this as one of the best years, yet.

New pics!

All I want for Christmas...

I need a friend. I could not imagine my life without my blogging friends who share this journey with me. Truly, they are a gift from God. But, I would very much like to have a real-life, flesh-and-blood, local friend to ride this ride with. I long for playdates, therapist comparisons, and a familiar face at those awkward Down Syndrome Association parties. I am so blessed to be part of the Ds community, and yet, I'm feeling kind of excluded from my real world.

Part of me is struggling a bit with Down syndrome right now. Eon will be a year-old next month and for a year, I have been almost consumed with all things Ds. It has been a necessary immersion. I have become an expert in order to best advocate for my son and to meet his needs. I don't know if my melancholy mood is because I feel the interest and support fading...it's been a year; get over it already. Friends are moving on. But, I never will. This is forever and I am feeling small.

Maybe it's because Eon's delays are starting to become more noticeable and I can't slide under the radar anymore. I don't compare him, but I feel like others do. Maybe it's because the finality of it all is finally penetrating my thick skull.

The conflicting feelings of this year have been exhausting......joy, because he's so incredible and sweet and hilarious; sadness, because of what might have been; fear for his health and well-being; contentment to be part of the club; anger over the senseless slaughter of so many of his peers; and certainty, because he is exactly who he was created to be.

Yesterday, I almost lost it when I heard "Joseph's Song" on the radio. "Why me?" is a feeling I identify with at times. I sometimes want to ask God, "What were you thinking? Why would you think that I can give this child what he needs? Why did you decide to choose me for the task?"

And, sometimes, I feel blessed beyond measure and unworthy of such a gift.

Should we be vetting the professionals who work with our kids?

I first heard the word "vetted" during last year's presidential election. It was used describing the background checking (or lack thereof) of Sarah Palin, once her teen daughter's pregnancy hit the news.


Recently, I came across an online discussion between women who have terminated for Down syndrome. They were discussing the thought processes behind their decision and lamenting the fact that they were unable to share their decision with people for fear of judgement. It was a fascinating discussion for me, until I came upon the post from a woman who works in special education. She shared that a colleague of hers really helped her make her decision to terminate by reminding her that, not only was she doing what was best for her family, but she was also doing what was best for society. Yikes!

It's disturbing that someone who works with people like my son would choose termination for her own pregnancy, but that doesn't necessarily disqualify her to me. I realized a long time ago that a 90% termination rate means that I likely interact with women all the time who've aborted their baby with Ds and I'll never know. But, to have the mindset that those with Down syndrome shouldn't even be members of society and then to work in special education absolutely blows my mind. Unfortunately, it got worse. She went on to say, "People don't condemn others for putting a sick dog to sleep. It's considered humane."

I cannot possibly believe that this woman and her colleague will have the best interest of my child at heart when they don't even feel he should live! I can't imagine that they will really work to help him meet his goals and his full potential.

How many people like these women work with children or people with special needs? Today, I read about a child with Ds who had been repeatedly "put in time out" in a bathroom, with the lights off by her special education teacher. The TA finally reported it and the family discovered the atrocity as authorities were trying to sweep it under the rug. I have always said that some people should be hanging wallpaper for a living and I think that applies here.

Throw in the former special ed teacher I met in Panera a few months ago who asked me, "Wouldn't it be great if we all had Down syndrome...and were able to beat the crap out of someone and get away with it?" and I'm starting to get a bleak picture of Eon's school career.

I have decided that I'll be doing a little vetting of those I let work with Eon. I will be asking direct questions to determine underlying belief systems. I want to know that those I allow to help us are truly for him.

Signing success!

Eon has been adding some signs. Since his initial "all done" sign after a meal, he has added "daddy", "mommy", a variation of "Michaela", and waves "hi" and "bye-bye". I admit to wondering if his signing was truly intentional or if his thumb just happened to be near his face at the time. The other day, Shawn walked into the room and said, "Hi, Eon!" He was rewarded with a huge grin, a wave, and the sign for "daddy"! No doubt that it was intentional. I was talking to our service coordinator about it and said, "He can sign 'mommy', too." As if on cue, Eon grinned really big and put his thumb to his chin.

I think that's pretty impressive for only ten-months-old!

Peace on Earth

In the last few weeks, my favorite on-line message boards have lost three dearly loved people. Gabby, a sweet 4-month-old with Down syndrome passed away after complications from heart surgery. We at Baby Center's Ds board grieve with her mother and mourn her loss.

On the Sonlight forums (homeschool support group), we were shocked to find out that Char, a sweet and thoughtful member, died suddenly as a result of an apparent heart condition that she was unaware of. We are devestated for her husband and two daughters. Just this week, another member lost her 7yo niece in an accidental drowning.

These deaths were on my mind as I was trying to articulate what exactly it is that I'm grateful for. I am thankful for my health and the health of my family. I am thankful that I was chosen to parent each child in our bountiful brood. I am thankful for their individual, and often hilarious, personalities. I am thankful for my amazing and witty husband. I am thankful for our home, and all our other stuff. I am consistantly thankful for hot showers.

But, I realize, now more than ever, that all of the above are circumstantial and temporal. It could all change at any time. We are all just a heartbeat away from a drastically different life than what we know.

So I am grateful for something more.

I'm reminded of when I discussed Eon's increased odds of Ds with my midwife. I had just been to the perinatologist's office and met with a genetic counselor. I was relaying that my odds had increased to 5% or 1:20. She cut me off, waved her hand and said, "Oh. It's fine. He's going to be fine." I agreed with her words and parroted the "fine" comment but added, "but even if it's not 'fine', it's going to be ok." She refused to hear me and kept insisting, instead, that there was nothing "wrong" with the baby.

We were saying the same words, but meaning totally different things. She could not believe that our son had Down syndrome. I was trying to tell her that it was ok if he did.

I realize that the same sentiment is what I'm experiencing now...even if it's not fine, it's going to be ok.

Even if my world changes tomorrow and the unthinkable should happen, it's going to be ok. Nothing surprises God. His grace is sufficient for me. He has promised to meet all my needs and He is here, with me. That's what Immanuel means, you know...God with us.

There will be struggles, grief, and wrestling with God when future trials hit, and they will come. Of that, I'm certain. But I will not be alone, of that I'm certain, too.

I was sharing this with my sister and trying to wrap my brain around my full heart and she said something profound. She asked, "You know what that is, don't you?" I did not. "Peace on earth," she said.

And she is right.

WARNING: This post has nothing to do with Down syndrome. If you read this blog only for it's Ds content, you may skip this post entirely.



If you have a large family, you may relate to the story I'm about to share. If you don't, you may think a call to CPS is in order. When we set out to have a large family, I had visions of the families that grace the cover of the homeschooling magazines, with all the children in matching outfits, gazing adoringly at their calm and sweet-spirited parents, ala the Duggars. My reality is um, a tad different.

We have been dealing with coughing and sickness in our home for weeks. The only time my kids will share without coercing from me is if it's a virus or bacteria. They share those really well. A few of the kids coughs seemed to be worsening, so I finally called the doc. Eon was only a little congested, but his bradycardia alarm on the apnea monitor had been going off every night for a week, so I took him in for good measure, too.



Unfortunately, one of the sick kids just happened to be my oldest, who also happens to be my babysitter when I need to run to a doctor's appointment with one or more of them. Which means, I wasn't just taking three of them to the doctor, I was taking all six of them. Ben, 4, had speech class right before the appointment, so we raced home from there to pick up the rest of the crew.



I didn't think to actually look at any of them, I just ushered them into the bus, er, van and away we went. Our appointment time was 2:30, or as we like to call it, naptime. All three boys still take naps, which is fantastic...unless we have an appointment at that time. We waited in the waiting room for a half hour which gave me ample time to realize that Tali, 5, had oatmeal from breakfast stuck to her shirt and ketchup from lunch smeared all over her pants. I also noted that she had apparently taken scissors to the knees of her jeans. Her hair remained unbrushed. I didn't bother to look at her teeth.



Zak, 2, sat kind of glazed during that time, but just started to get his second wind when the nurse called our names. As we all ushered into the tiny exam room, four of the kids noticed the small bench with ample seating...for two. They immediately started jockeying for position with lots of elbowing, yelling, and a little pinching while I was trying to give the nurse the histories. When she took Zak to get his weight, he started screaming and refused to climb on the scale. Big sister, Michaela, 13, bravely showed him how it's done and he reluctantly participated.



Back in the room, Zak, Tali, and Ben discovered the stairs to climb on the exam table. They had a great time climbing up and jumping off....over and over again, complete with war whoops with each jump. Ellie, 9, took it upon herself to corral them, until one of them bit her! Of course, she erupted into tears just as the doctor came in the room.



He asked me to repeat the histories all over again (why do they do that? Why must I share it the first time? Why did she write it all down?). I am hissing at the children to "sit down! Be quiet! Get off the floor! LEAVE THE LIGHTS ON, BENAIAH!" in between answering questions about coughs and fevers.



Finally, he examines them. Eon's up first and I'm told that the child I brought in as an after-thought is "really sick" and needs a breathing treatment right there. Zak's up next and is really ticked when I have to hold him down to be examined, so he kicks me and calls me, "stupid". Nice. His left ear looks great, but the doc needs to clear the wax from his right. He proceeds to do that, and pulls out...a fruit snack, at least a partial one. Sigh. That kid has a complete fascination for all the openings in his head. Thankfully, I learned a long time ago the secret to removing foreign objects from a nostril without a trip to the ER. Otherwise, we would be on a first name basis with the triage nurse.

Michaela complains of a plugged ear during her turn, so the doctor jokes that maybe Zak stuffed something in it when she was sleeping. Oh, he's hilarious.

The chaos continued as the nurse hooked up the nebulizer machine for a breathing treatment for Eon and informed me it should only take about 15-20 minutes...in the little-bitty room...with six children, three of whom still hadn't had a nap! Eon wailed during his treatment which just added to the fun. Before he stepped out, the doc mentioned that he was sending us to the hospital for chest x-rays.

I panicked and tried to call my husband for reinforcement. No way was I about to have a repeat performance at the hospital! My blessed husband informs me that he can't really hear me above the machine, Eon's cries, and the fighting of the others, but he'll call me in a few hours when he's at a stopping place on this job. Ack!

Breathing treatment ends, finally, and the doc returns with the scrips for the x-rays. He has the nurse take another reading of Eon's O2 sats, and finds they are only 91%. She keeps trying and he's talking about sending us to Riley Children's Hospital and I'm thinking, "No. stinking. way." Eon is happily shredding the paper chuck he's sitting on while the machine drops to 88%. I mention that perhaps it's the machine. Thankfully, the nurse is smart enough to move the monitor to his hand and it magically increases to 96%, where I immediately take it off of him before it has a chance to drop again.

Finally, they let us leave and I find that it's now 4:30. We have been there for TWO HOURS! The boys fall asleep as soon as their car seats are buckled. My dear husband calls to tell me he wrapped up his project early when he heard the distress in my voice. I'm able to drop off my problem children into his capable hands.

I call my sister, share the whole sordid tale, and admit, "The only thing that seperates us from white trash is that they all have the same father...and I'm married to him."

Feeding the taste-challenged child

Eon has some weird eating habits already. At first, I thought it was just texture that he deplored. He does fantastically well with stage 2 baby food...from a jar. When I grind up whatever the rest of us are having (usually just the veggies), he stops all mouth movement, looks at me accusingly, and gags. Every time. We introduced Cheetos Naturals for him to self feed. He did great...when the therapist was here. Then, he did the gagging thing a few times and now he just takes them and tosses them off the tray.

Over the weekend, we went to Pokagon State Park to celebrate "Thanksmas" with my side of the family (don't ask), and he got to try apple spice cake. I was expecting the gagging/vomit routine, and he did gag once, but then he got excited and ate almost a whole piece, one tiny bite at a time. The next morning, he did the same with coffee cake.

I'm starting to see a theme. Cake = good....mom's cooking = very bad. So maybe it's not texture; maybe it's taste. Who knows?

Apparently, I'm a Pollyanna

Last week in the UK, news broke that women were experiencing more Down syndrome pregnancies, but fewer births. The increase in pregnancies were related to more women delaying childbearing. The decrease in births were related to "better" screening procedures with more terminations. In reading the articles related to these findings, I found myself reading the comments sections...again (when will I get a clue?).

Comments always seem to follow a pattern...someone comments that they had a distant relative with Ds and that person was a drain on the family, and then the siblings got stuck taking care of him. Someone else comments that it's irresponsible to condemn a child to a life of "suffering" and termination is a good alternative. Then, a parent of a child with Ds will chime in and correct some misinformation which has been spouted and communicate what a joy their daughter is and how children with Ds are more "normal" than not, etc.

There will be a lot of comments following in the above vein, until someone comes on to accuse all the parents who are being positive of lying. That anyone who claims that raising a child with Ds isn't a horrible experience is delusional and a pollyanna. (I've read the original story of Pollyanna. Since when did finding the silver-lining become a bad thing?)

I recently heard something similar from a woman who is considering terminating her pregnancy because of T21. She said that the advocacy groups only post the positive and she could practically see "the cute little bunnies hopping across the page". She was asking those who have already terminated what it was really like to have a baby with Down syndrome. Um, seriously? I don't think they know...they aborted.

Why can't the critics believe the people who have been there, done that? Maybe having a child with Down syndrome is a positive thing. Why is it so hard to believe that we really love our children, that we are proud of them, that we have learned from them, and that our lives with them are normal? Why is the burden of proof on us, for crying out loud. And, why on earth would they think we have reason to lie about it?

Leaves a bad taste in my mouth. I have got to learn to stay away from the comments section!

Down Syndrome Creed

My face may be different

But my feelings the same

I laugh and I cry

I take pride in my gains

I was sent here among you

To teach you to love

As God in the heavens

Looks down from above

To Him I am no different

His love knows no bounds

It's those here among you

In cities and towns

That judge me by standards

That man has imparted

But this family I've chosen

Will help me get started

For I'm one of the children

So special and few

That came here to learn

The same lessons as you

That love is acceptance

It comes from the heart

We all have the same purpose

Though not the same start

The Lord gave me life

To live and embrace

And I'll do it as you do

But at my own pace

--Unknown

Anyone else sick of Down syndrome?

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

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

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

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

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

Wordless Thursday?

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

The Dad and Down syndrome

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

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

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

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

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

Next step?

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

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

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

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

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

My Response to Termination Reasons

I recently jumped into the fray of a discussion on babycenter's Abortion Debate: A Fair Approach. The thread was started by a woman who wanted to explain what late-term abortion was really about. She shared her experience focusing on the fact that all the women at Dr. Tiller's clinic were terminating wanted pregnancies and had received news about horrible medical problems with the baby. The original poster did not share what diagnosis her little one faced. Here is the response I posted:

I cannot pretend to know what it's like to have my baby prenatally diagnosed with a fatal condition. That is a road I haven't walked. But, the majority of terminations for medical reasons are for T21 (or Down syndrome) and that is something I can speak to.

In listening to women discuss why they chose to terminate for Down syndrome, I'm struck by how untrue their reasons are, or at the very least, unknown.

1. My baby wouldn't have a normal life. What is the definition of normal? If it is to walk, talk, read, attend school, have friends, play sports, fight with siblings, grow into a responsible adult with the possibility of attending college and getting married, then this reason is false. We are seeing persons with Down syndrome accomplish this and much more.

2. I couldn't let my baby suffer. Suffer? Really?!? Have you seen the pics of the kids on the Down syndrome board? Have you ever met a person with Ds? This is a group of individuals who embrace life, and expect you to do the same!

2b. My baby had a heart defect and would've needed countless surgeries. An estimated 50% of kids with Ds have cardiac issues, but many of those will never need surgery. Of those that do, the most common problem is an AV Canal defect (also one of the most serious). However corrective surgery for this is so common that it is often referred to as "routine" and boasts a success rate in the high 90s. Heart surgery is not fun. It is scary for all involved, but most of us found waiting for surgery to be much more daunting than the actual event. Pediatric hospitals are experts at pain control and keeping our little ones comfortable. Most of our heart kiddos will not need another surgery and the average hospitalization is 5-7 days.

3. We decided it wasn't fair to the child/children we already have. The first person to congratulate us on the birth of our son was a man whose brother has Down syndrome. He said, "Your children are about to know a love like no other!" Siblings are a gift, regardless of the number of chromsomes they have. There may be more appointments and therapies for the child with Ds, but it's not an either/or proposition. Our youngest is just one of the bunch. He gets therapy; the others get sports or piano lessons.

4. There will be no one to care for our child when we are gone. Because of early intervention and medical advances, it is expected that kids born today with Down syndrome will live independently with minor support. That support can come from friends, neighbors, or social workers. Unfortunately, as the average lifespan for a person with Ds is only 50-60 years, it is possible that you will outlive your child, as well.

Of course, there will be exceptions to what I've written. Life is full of exceptions and completely lacking any guarantees. Those are the unknowns that I referred to. But, we face unknowns with our typical kids every day. I had no idea that my typical daughter would fall from her crib at 2 years old and break her leg, requiring surgery; or that my typical 9 y.o. would struggle with dyslexia and ADD. There was no prenatal test to inform my friend that her 4 y.o would develop a tumor and require the surgical removal of a kidney and countless hours of chemo and radiation.

But, like Down syndrome, the above challenges are just a tiny part of life. We just do what mothers do - we take them one day at a time.

Down Syndrome Clinic

We had another appointment at the Down syndrome clinic on Monday. Good news all around. First, we don't have to return until Simeon is one year old the end of January! Second, his weight is good at almost 19lbs, but not so high that we're worried about the added cereal in his bottles. Third, Dr. Stanley agreed with me that we should postpone his feeding study for a few months.

He will have a video feeding study around 10-11 mos. where we can look at how he does with thicker foods, as well as thin liquids. My hope is that, as he continues to be upright more and strengthens his trunk, he will be more apt to pass the study.

We also reduced the dose of Zantac that he takes for silent reflux and eliminated his iron supplement due to a clear CBC.

Developmentally, he's doing great! I have no idea where he is in relation to typical kids - he's just Eon, ya know? (Athough, with six kids, you'd think I'd have more of a clue:) At one week shy of 8mos., he is able to:

• Prone pivot - move around in a circle while on his belly to get at stuff; starting to move out of the circle, too, although usually backwards which frustrates him.
• Sit unsupported for a few minutes at a time - I still can't walk away, yet, but it won't be long
• Babble consonants - mamamama, dadadadada, blablablabla
• Bring everything to his mouth, pass toys from one hand to another, and hold a toy in each hand
• Push up with straight arms when on his belly, and just started to try to get on his hands and knees (needs a lot of work)
• Roll both ways
• Laugh hysterically, and throw a hissy fit when someone takes his toy

He eats about two jars of stage 2 baby food per day and is starting to think it's really funny to spit it all over his momma. :)

I never noticed these milestones with my typical kids. I didn't even know that prone pivot was an actual term or that it was desirable to hold a toy in each hand. Because each milestone takes a little longer to acheive, we celebrate them more. It's a good thing!

Advocacy and Exhaustion

I generally wear my heart on my sleeve. I'm very real about my life, thoughts, and emotions. I'm terrible about erecting walls. If you are not, you might be tempted to think that this is a good thing. Let me quickly assure you that it is not. With increased vulnerability, comes an increased risk for woundedness. One of my greatest fears is to be misunderstood.

It happened yesterday, in a group, of course. I felt attacked and retreated, but lost the opportunity to clarify, to be understood.

I returned home to lick my wounds and wonder why it had hurt so much. Why did I care so much what those people thought of me?

The conflict had nothing to do with Eon or Down syndrome, and yet my response had everything to do with them. I overreacted because I've been living in a state of high alert. I am constantly on the look-out for ways to advocate and educate.

Being the mother of a child with Down syndrome is much harder than I imagined, but not in the ways I thought it would be. Parenting Eon is a breeze! He is the easiest, most content, delightful baby I have ever had. Unlike my typical babies, I never tire of caring for him or meeting his needs. He is a complete joy!

But we live in a hateful, selfish world. I read wonderful articles advocating for people with Ds, and then scroll down to read vile, nasty comments. There are many who strongly advocate that aborting a baby with Ds is, not only acceptable, but rather the only responsible choice. There are many who are simply ignorant of today's Ds, and doggedly hold to the "what happens when you're gone and the siblings will have to care for them?" mentality. There are many more who are concerned with the monetary cost to society as a whole, a sentiment sure to spread like wildfire when the government gets through with healthcare.

The first group always shocks me, the second irritates me, and the third scares me.

And so, I continue to educate and advocate. But I get tired of the process. And he is only seven months old. I will be doing this forever. But not today. Today, I'm going to lick my wounds and hold my boy.

After seven months of intense drama with questions about faith, fear, and suffering, and physical, emotional, familial, financial, vocational, and spiritual changes, I'm finding it difficult to just live normal life. The mundane is boring in its blandness. I find myself having conversations about curriculum or cooking, weekend plans or vacations and walk away feeling hollow. Topics that used to rev me up, leave me somehow dissatisfied.

Before you suggest it, I am not depressed. I have been there and this is not it. I love life and feel as if I have just emerged from the longest postpartum period of my life. I look forward to each day, laugh often, and cry little. I am grateful for all the things God has so graciously given me.

I do wonder if I've become an adreneline junky. I don't miss the hospitalizations, surgery, or the newness of a Ds diagnosis. But, with all that came a passion to grapple with the tough questions, to wrestle with my faith, to solidify my thoughts, and to dig into the Bible and see it come alive. With it also came a passion for a segment of the population that has an extra chromosome and, because of that, will never make it out of the womb alive; and a passion to bring home those that have survived the womb, only to be born into a country that refuses to see their value, and sentences them to languish in mental institutions.

My other passions - to know the heart of my savior, Jesus Christ, to love and train my children for His glory, and to love and respect my incredible husband - are still alive and kicking. But other things that used to seem important - grocery lists, vacations, enrichment activities, TV shows, popular music, etc. - pale in comparison. Unfortunately, the latter seem to make up the fabric of our society, so I find myself on the outside of the camp. The tedium is too much for me.

I don't have a solution. I'm just sayin'.

Just a baby

Last week, we had our first meeting of the year for our homeschool group. Our family was basically MIA for the spring semester last school year because of Eon. Our group was kept updated on Simeon's birth, diagnosis, subsequant hospitalizations and surgery via frequent emails from a friend and fellow member. I took Eon along to the meeting and it was the first chance many had had to meet him.

Generally, the comments were of the "he's so cute" and "how's he doing" variety. But one gal really surprised me. She stopped to chat and tell me that they'd been praying for him. After asking the usual questions and watching him for a bit, she shocked me by saying, "Oh! He just makes me want to have another one!"

It took me awhile to realize why I thought that was so cool. I think it's because she saw Eon as a baby, first. And second, it's because she not only totally accepted him, she'd be just fine with one of her own. Of all the women there, not one other woman looked at my baby with longing. But she did. I can't tell you how it warmed my heart.

"He's really blessed to have been placed in your family," our favorite nurse from the ped's office informed me today. I was surprised and responded, "Actually, it is we who are blessed!" I was surprised that she made the comment because, quite frankly, we see often see ourselves as slacker parents. She assured me that we will see to it that Eon gets what he needs, but mostly that we will treat him as one of the kids, first and foremost.

Her observation really blessed me because I often see myself as a bit of a slacker parent. Sometimes, it's all I can do just to tread water. I feel like I should be doing more therapy with Eon. I feel guilty that I haven't yet purchased the "Teaching Your Baby to Read" program, and I can't believe that I still have yet to watch the "Baby Signing Times" dvd I bought months ago. I am confused about which vitamins to add and when, and just now remembered that I forgot to take him to have his 6mos. labs drawn today. Sigh.

So, for her to tell me that he is blessed to be my child, is something I'm having trouble wrapping my brain around. Maybe the most important thing we can do for him as he grows is to treat him as the normal kid that he is; to expect him to do for himself when he's able, to discipline him with love and grace, to teach him to have a servant's heart, and to train him to put others before himself - just like we are doing with his older siblings. Maybe it doesn't have to be as hard as I'm making it. Either way, it was really nice to hear!

And so it begins.

Today, we started solids. There is not much that I like less than the mind-numbing task of shoveling food into an infant's mouth. I tend to delay the onset as long as possible. Couple that with fact that I can never seem to remember which order to do it in. Food and then bottle or the other way around? Anyway, I've been procrastinating on starting this. At first, I was waiting until he seemed ready, but he's been exhibiting an interest in feeding and the trunk/neck stability for awhile now. So, today I got Eon all settled in the high chair for the first time. I adjusted the straps, realized it needs a serious cleaning as older brother Zak just moved to a booster seat, and found the baby spoon. I decided to feed him oatmeal as that's what we thicken his formula with. After the first few bites, I realized that we are in for the long haul. He made no attempt to close his mouth, move his tongue, or swallow. It all came dribbling out. Ugh. I thought I had low expectations, but that was about as unsuccessful as you can get.

BUT, the next time, I remembered to push down on his tongue with the spoon and he closed his lips around the spoon. Then he started to smack his tongue and taste the cereal. A few more bites and he seemed to enjoy it. He still got way more on himself than he swallowed, but it really went pretty well for a first attempt.

(I am quite aware that the OT will invariably find fault with just about all of it next time she comes, but I choose to bask in the glow of success while I still can.:)

I'd like to try some new foods in the coming weeks. Is there anything in particular that we should wait to introduce? I can't seem to remember if there is a particular order or if little ones with Ds are more prone to food allergies.

Simeon is six months old now and I thought I should give an update. He is such a delight! We went on a camping vacation last week and he is the best little camper ever. He can sleep anywhere. I felt guilty much of the week because he spent so much time in his car seat or stroller. I tried to make sure he got enough tummy time and stimulation, but I don't think we did his prescribed therapy even once. Imagine my surprise when we returned home and he suddenly started meeting some milestones that he's been working on.

He can now sit unsupported for brief moments. He can prop up on straight arms when prone and scoot to the side to get at a toy out of reach. He can transfer toys from one hand to the other and everything goes in his mouth. We will be starting infant cereal soon as he starting to watch us eat and mimmick our mouth movements. These are all things that seemed so far away just a few weeks ago. His PT is so impressed that we will be starting weekly sessions as soon as we get approval.

He had not had any apnea episodes since surgery until last week in the camper when he had two in a row and needed stimulation to recover from the second one. So grateful for that monitor! When he sleeps on his back, he goes into bradycardia but no one in the medical community seems to care, so we just let him sleep on his tummy.

I am officially done pumping and feel really good about that decision, although if he gets sick anytime soon, I'm sure the guilt will come. I am amazed that he was able to get breastmilk until six months and even more amazed about how much more time I have in my day.

He is still the star of the show around here and sometimes I even get irritated when I hear his siblings constantly bicker, "No! He already gooed at you. It's my turn now!" His oldest brother, Ben who will turn four this month, is still his biggest fan and has been participating in therapy sessions so that he can "do therapy" on his own with Eon (with mom closely supervising, of course).

I cannot believe the depth of love I have for this baby.

The Freak Show adds Down syndrome

We have six children. It doesn't seem like a lot to me (most of the time), but it's obvious that six is a lot to other people. Don't get me wrong, for the most part, our children are well-behaved, respectful, and delightful...but, they are definitely children and act like such most of the time. We now drive a 15-passenger (former daycare) van and have the stick figure family decal on the back with mom and dad, three girls, three boys, a dog, and a cat. They didn't offer turtle or guinea pig stickers or we would have those, too. When we go places together, people notice.

We get stared at. The looks we get range from the mildly curious to the outright hostile. Sometimes, genuine smiles of encouragement are thrown in, as well. The comments we receive vary, too. From "You sure have your hands full" (my heart is full, too) to, my personal favorite, "Don't you know what causes that?" (yes, and obviously we're quite good at it. I notice you only have two kids. Would you like some pointers?) My point is that we look like a freak show when we go out.

Now that Eon is getting older (he's SIX MONTHS already!), I notice more people staring at him, as well. I'm not sure if they are trying to decide if something's wrong with him or if they are recognizing the Ds. Either way, they can't help but interact with him because he is so cute and thoroughly charms everyone he meets. It amuses me because I think he's beginning to deflect some of the attention we receive because of the size of our family. People seem to notice our numbers first, and then catch sight of him and forget to react about our size. Down syndrome is down playing the freak show that is our life. Gotta love that!

I might vomit.

Please tell me that the rest of "Christendom" doesn't feel this way. I was directed to a new website this morning: www.pray4trig.com It's a website designed to organize a national day of prayer on Trig Palin's birthday next year. "Congregations across the globe will join in asking God to make Trig whole....and for healing Trig of his affliction."

Ugh. Really?!? I cannot begin to express how appalling this is to me. I do believe that it is well intended, albeit misguided, but to really get to the heart/mind behind it, you must read the comments on the welcome post. The creator of the site is actually indignant that those of us with Ds would want our children to remain as they are...as they were created to be.

I'm sure I'll revisit this at some point, but I cannot shake the sick feeling her comments, and the attitudes behind them, have left me with this morning.

We went to our first community Down syndrome event recently. We attended the Ds Indiana picnic. As we parked and unloaded everyone, I suddenly had a panicked thought: I hadn't prepared the kids at all for what we might see and experience. Specifically, I hadn't had the "people are different" discussion with them in awhile. "Too late now," I decided.

I was a little overwhelmed at first. My eye was immediately drawn to the kids who were more involved medically and that was intimidating to me. But, after awhile, I realized that the kids who were hurling themselves down the slip-n-slide, climbing across the jungle gym, going back for seconds at the dessert table, and just being "kids" had Ds, too. That was such an encouragemet to me!

I met some great people and my kids had a good time. I probably should've given the "people are different" speech, though. Not because of their response to anyone with Ds. One of the grandmas was a little person. She was about Zak's height (he's 2). It took Ben (almost 4 y.o.) a long time to notice her, but when he did he immediately pointed and said, "She's creepy!" I grabbed his hand and hastily whispered my speech in his ear. He didn't say anything for a long time while he just watched her. Pretty soon he asked, "Is she real?" Ugh. Zak didn't say anything when he spotted her. He just pointed and laughed and laughed. Yikes!

In hindsight, I wish I would've approached her. I doubt she would've minded, after all, she knows she's little. I think it would've been great for the boys to have had a conversation with her. Maybe next time. I loved that they didn't seem to notice anyone else being different!

I shouldn't complain, but...

Simeon is a super sleeper. He always has been. When he first came home, it was a bear to try and wake him up for middle of the night feeds. Now, he generally goes to bed around eight and sleeps until 6:15 or so. Really, I love that he sleeps all night! But, 6:15? Really?

The other kids sleep until 8:30. I know; I should totally take advantage of the hours between to get something done. Problem is that I spend that time feeding the baby, pumping, and snuggling with him. (Yes, still pumping. He failed the swallow study and is much as I hate it, I can't bring myself to stop pumping and end his suppply of breastmilk.) I enjoy having him to myself in the wee hours. He is so cute! And so funny!

But, honestly, I'd rather be sleeping. :)

Spooky Hens

Catchy title, eh? That's what a friend of mine calls women who seem so "spiritual" they are barely here. Recently, I unwittingly sought out a spooky hen. Ever since giving birth to Eon, people in our circle have been encouraging me to call this woman since her daughter has Down syndrome, too. I was unready to cold call a woman that I'd never spoken to, until a few weeks ago when heart surgery was looming. I knew that this woman's child had undergone heart surgery and thought I'd drop her a line.


Admittedly, my expectations were probably a bit high. I thought we'd immediately connect over shared experience and brag on our children, discuss doctors and therapists, and reminesce about the moment of diagnosis. A full 90 seconds into the conversation and I knew I'd made a big mistake. She seemed so intent on discussing angel visitations and heavenly things that she made little earthly sense.



Throughout the conversation, it became abundantly clear that she really had very little knowledge of Down syndrome, which was very surprising to me given that her daughter is four years old. Most of the moms I've connected with have become experts on the subject by the time their kids are a few weeks old.



Unfortunately, at the close of the call, the reason behind the ignorance was shockenly apparent. She informed me that her daughter is being healed of Down syndrome, that even the physical therapist has noticed that she has less and less features of the diagnosis. And then she assured me that my son will be healed as well.

I was speechless. I so wish that I had stuck up for him. I wish that I would've told her that Eon is perfect, that he was created in the image of an Almighty God, that Down syndrome is a wonderful part of who he is. Instead, I mumbled something about needing to attend to my children and hung up.

In telling this story to other Ds moms, I've had some think that my point is that healing of Ds is impossible because a third copy of the 21st chromosome is in every cell of his body. Not true! I know that God could very well eliminate that extra copy if He chose to. He's God. My point is: Why would he want to? As Psalm 139 points out, God formed Simeon in my womb. His days were set before him before one of them came to be. God created him for a purpose and for His pleasure. I am blessed to be a part of it.

I'm sad for this woman's daughter. The best thing we can do for any of our children is to embrace them fully. I wonder what kind of message she is sending to her by insisting that she needs to be healed of the building blocks that shape who she is. Another friend of mine defended her by saying, "Well, she has a lot of faith." Does she? Is that what faith is - claiming that reality is different than it actually is? I don't think so and I'm pretty sure scripture backs me up. I'll get to that in a future post.

Pumping must go!

Well, after some soul searching after my last post, I think I might've figured out where my frustration really lies. I am constantly frustrated by my complete inability to accomplish anything. After spending a day looking at my time management, I realized that I spend SIX HOURS of everyday pumping for and feeding Eon! That does not include baths, diaper changes, therapy, consoling fussiness, etc.

No wonder I can't get anything done! Throw in the usual refereeing, soothing ouchies, detangling hair, buttoning buttons, tying ties, etc. that go with lots of littles, and it's a wonder they are even fed. What a relief to have a cause.

Now I just have to figure out what to do. I have nursed five babies for at least a year each. Since Simeon needs his milk thickened, I have been exclusively pumping for him for over four months. I really do believe breast is best and I wanted him to have the best start possible, but, at some point, you have to look to the needs of the whole family. His next swallow study is scheduled for next Monday. He'll be five months old on that date. If they don't clear him for thin liquids, I will begin to decrease pumping and introduce formula.

If they do clear him, I'll try to teach him to nurse. Is it even possible to teach a 5 mo.-old to breastfeed? Hopefully, we'll find out. I'm not hanging my hat on it. Any suggestions are welcome! Either way, pumping will soon be a thing of the past and I am looking forward to it. Maybe I'll actually get to complete a task once in awhile. :)

Functioning

The enormity of having a child with Down syndrome hits me at the oddest times. Just now, as I was changing his diaper, it hit me that I have a child with special needs. Probably because he doesn't actually have any special needs at this time, with the exception of thickened liquids, I have trouble wrapping my brain around that. (The recent surgery for the vascular ring was completely unrelated to Down syndrome - just one of life's quirks.)

But, when I think of what's to come, I am overwhelmed. I alternate between a fascination with articles and antecdotes about adults with Ds, and a complete denial that my child will be anything like them. At this point in the journey, I am simply overwhelmed by having six children, four of whom are under the age of six. But, I know what's coming. He's a wonderful baby and I am looking forward to his toddler charm, but with that will come more therapies and an ever closer determination of whether he'll be the elusive "high-functioning" or the dreaded "low-functioning" person with Ds.

There, I said it. While Simeon has equal value regardless of high or low, I want him to be high functioning for his sake, as well as ours. Why? Because life would be easier. No matter how much the Lord shows me about the value of suffering, I'm still human enough to want, hope for, even long for easy. Right now, everything just seems hard. It's hard to even complete a load of laundry without some sort of emergency around here and organizing the clan to even exit the house leaves me irritated and exhausted. I want to hope that someday, life won't be so blasted difficult. With Down syndrome in the picture, I'm not sure I can.

Home, sweet home!

We're home! For awhile it looked like we might have to stay, as his heart rate and temperature suddenly climbed, but after much prayer, the Lord had mercy and he stabilized. They decided to let us come home. The other kids are still at my in-laws until tomorrow so that we might settle in peacefully. He's doing very well.

My opinion of Riley, our local children's hospital, went up considerably because of this visit. The staff in the heart center is phenomonal (with the exception of one very arrogant nurse practitioner). They went out of their way to make sure Eon (and his parents) were as comfortable as possible. They obviously love what they do and they are great at it. We are very grateful!

The Lord is teaching me much about faith, spooky hens, and child advocacy. I'm sure I'll share most of it in another post, but for now, I'm going to enjoy the comfort of my own bed.

Out of ICU

Eon is doing great! He's been moved from ICU to the heart floor and there is talk that he could go home as early as Monday! He started the day looking miserable. I got here to relieve Shawn around 7:30 and he just looked pitiful. I asked Shawn if he'd been fussy and he said, "Only when he was awake." But, as the day progressed, they removed his chest tube, foley cath, and arterial line and he is starting to show us some smiles. Mostly he just eyes everyone suspiciously. His milk intake is good and he's tolerating it well, too. I finally got to hold him as we brought him to the 4th floor and that's the first time he really smiled, as well.

Praying for a good night, no infections, good pain control, and sleep for both of us.

Surgery a Success!

Surgery was a success! He's in the ICU, still sedated but stable. I'm exhausted and will post more later, but need to sleep. :) Thanks for all the prayers.

Surgery time

Spent the day in pre-op. Everything looks good and surgery is scheduled for 7:15 a.m. EST. We appreciate your prayers and I will update when I can.

Faith, Fear, and Focus

Simeon's surgery is 4 days away and I do not know how I am going to get through the next few days. I am in a fog. I feel like my brain is already at the hospital and I cannot complete a thought that is not related to infant heart surgery. I've gone from complete peace to paralyzing fear to an odd numbness in the span of one weekend.

Yesterday, I was pondering faith versus fear. I used to think the two were opposites, or, at the very least, mutually exclusive. I'm learning, though, that they can co-exist. In fact, I'm learning that there is a type of fear that is born from faith. Because of my faith, I know that God "works all things together for good for those who love Him', that he is good, that He loves me enough to send His only Son to die for me, and that His thoughts toward me are to give me "a future and a hope". God often allows suffering to deepen our faith, conform us to His image, cause us to lean on Him, and to teach us things that we could never learn in the midst of ease and pleasure.

The fear comes with the faith. The fear says, "Maybe there is something God wants to teach me and He needs to take my son to do it." I have complete peace that He would provide grace, peace, and comfort if that were to be the case, but it doesn't make the thought any less terrifying. I can't help but think of the "what ifs" in this, of all, weeks. The problem with faith versus superstition or just dumb luck, is that I can't say, "Oh, it will be all right", because I know that sometimes, it's not.

I know there will be a part 2 to this post. I know that God is working something in me even now through this experience. But for now, my thoughts are swirling even though my brain feel like it's shut down. I cry a few times a day and am doing my level best to be present for my children. They need me to be here and connect with them. It's a chore and a joy at the same time.

We've had no apnea alarms since my last post! Yay! I did call the cardiologist's office and reported the bradycardia (low heart rate) to the nurse who didn't seem to care. Which is fine. If she's not concerned, niether am I.

Four of Eon's siblings spent the last week with their cousins at my sister, Tonya's house. According to her, they were amazingly obedient and wonderful (until the last day). Once they arrived home, all sense of obedience seemed to fly out the window. Why is that? It's like they had to work so hard at being good, they let it all hang out when they come home. We call it "re-entry" and it has been difficult at best.

Eon, however, seems energized at having them home. He is eager to show off his new skills for them, like batting at the hanging kitty on his swing or waving his "hallelujah hand" while sitting in his bouncy seat. Mostly, he just seems more awake and interactive. Apparently, we were boring him. I was actually concerned that he was sleeping so much, but I think he was just taking advantage of the quiet. I wish I would've joined him!

Surgery is Friday and I am starting to let worry creep in. I wish I had a better idea of what it entails and what I can expect for recovery. I guess I have to wait until pre-op on Thursday to get the details.

Apnea monitors, heart rates, and alarms...oh my!

You may remember that after Eon's scary "found him not breathing and unresponsive" episode that the ped gave us an apnea monitor. It is something I wish I'd had for my other kids, too. I call it a sleep aid for mothers. Prior to receiving it, I did not sleep through the night, or even several hours in a row. Eon did, but not me. I constantly woke up to check on him. So much so, that I even started going to counseling for anxiety. Turns out, all I needed was an apnea monitor. I tried to convince the counselor to prescribe them for all her patients, but I could see how it probably wouldn't apply in every situation. :)

It went off one time the weekend between receiving it and his hospitalization, but it was a false alarm due to his electrode peeling off. I was just happy to know the dang thing worked! Since coming home from the hospital almost two weeks ago, we've had three infant episodes and one false alarm. Unfortunately, they were all in the last two nights. The night before last, at 1:00, it went off for 3 seconds due to his heart rate dropping. The alarm woke him up, as well as everyone else in a 3-block radius I'm sure, and he was fine. Early in the morning, we heard the sustaining beep of a false alarm. It was just Eon trying to remove his electrode. He likes to hold onto his shirt and accidentally grabbed it, too. Last night, it went off at 2:30, for 1 second (it beeps every second) because he stopped breathing. That means he stopped breathing for 21 seconds. Again, the alarm woke him up and he was fine. We were jolted out of bed at 5:00 this morning because it went off for 5 seconds, this time for low heart rate again. He's fine. He's fine!

I never thought I could actually come to love a machine. I am so grateful that we have it! (falling back to sleep after an episode is a little tricky, though:)

Some thoughts

This post has been niggling in my brain for a few weeks. (not sure if niggling is really a word, but I tend to make stuff up). A few weeks ago, on two seperate occasions on the same day, I had the same conversation that is bugging me still.

Both times, I was talking to a woman about the staggering abortion rate of babies with Down syndrome. Both times, the women were Christian moms who are very pro-life and who have been very supportive of Eon. Both women expressed dismay when I told them that 90% of women terminate their pregnancies when faced with a Ds diagnosis. Both times, I thought we were on the same page...until they expressed the same sentiment that caused me to suck in a breath.

"That's terrible. I know someone who was told that her baby had Down syndrome, but it turned out to be perfectly healthy." What? Did you mean to just imply that it would be a greater tragedy if she had aborted her "perfectly healthy" baby than it is that so many babies with Down syndrome are aborted?

I know that I am super sensitive to this issue, and I am convinced that neither woman intended to express that sentiment. But, I do think that somewhere in their world view, a belief has taken hold that briefly poked out it's ugly head. The belief that much of society adheres to: "People are valuable for what they can do, versus that they just are." They would deny it, if confronted with it, and I do not think that it is a conscience thought, but it is there. Deep inside, both women believe that aborting a child with Down syndrome is less of a tragedy than aborting a child without it.

It makes me sad. I have more thoughts "niggling" but we are late to an open house.

We have a surgery date!

Eon's surgery is scheduled for June 12. We go to Riley on the 11th for pre-op which will take 5-7 HOURS! We will not know until then what time his surgery will be. I am so glad we live close to the hospital. I can't wait to be on the other side of this! I'm doing very well and continue to have amazing peace about putting his life into another's hands, probably because I already have. He is not mine. His life belongs to the One who made him. I will fight for him, pray for him, love him, challenge him, disciple him, play with him, and provide him with every opportunity for a full life, but ultimately, I am not in control. Praise God - I am not in control!

We've had a busy weekend attending graduation open houses. Eon seems to enjoy being passed from person to person. He's a big hit with our friends and the friends of his siblings. Speaking of siblings, the middle four are staying with their Aunt Tonya for a week so we can get some projects completed around here. It is very quiet. I think Eon misses the commotion and bedlam as he seems a little fussier than usual. I think Aunt Tonya should be considered for sainthood. :)

Home...for now

Simeon was finally discharged from the hospital yesterday. We were so blessed to have a private room for most of his stay. We didn't realize how blessed until they had to move us into a double room a few hours before discharge. Oh my. We were even more excited to be released!

He had his nap study in the morning, but I was told it was to be in the afternoon so I let him sleep after his 6:00 a.m. feeding. Ugh. So he just dozed a little bit during the study and never got into the deep, scary sleep. Needless to say, they didn't find anything.

What they did find (that is not related to the apnea, apparently) is that he has a double aortic arch. It's a fairly rare congenital cardiac abnormality that basically means that his two aortas form a ring around his neck, compressing his trachea and esophagus. He is virtually asymptomatic at this time, but as he grows the compression can cause scary respiratory and swallowing issues. It is very good that they found it so early because the worse the symptoms before surgery, the longer the recovery time. So, we are waiting on the call to schedule his surgery for sometime in the next few weeks.

Cardiovascular surgery is a little frightening. Strangely, I have perfect peace about it. I believe that God was protecting our little guy when he woke me up to check on him the other night ,and I believe that he was also protecting him when he allowed the doc to find the DAA on his upper GI test. As much as I would like to be in control, I am not. Amazingly, there is a peace with that knowledge.

Still here

We were supposed to be a direct admit yesterday, but someone forgot to tell the ER, so we visited with them for 4 1/2 hours. Of course, they wouldn't let Eon eat, so he went 6 hours without a feed. He was an amazing little trooper and a huge fan of pacifiers dipped in sugar water. We finally got a room (and Eon finally got a bottle), but by then it was too late to get any of the tests that were ordered. Disorganization seems to be the rule around here.

Today, he had an upper GI, and ultrasound, and a speech consult for feeding issues. Tomorrow, he is supposed to have a contrast CT scan under general anesthesia in the morning and a nap/sleep study in the afternoon. Tests seem to breed more tests, so all of that is subject to change.

I would give you an update on what they found and what they're looking for, but honestly, I've decided that ignorance is bliss and have tuned out all explanations of possibilities. I just want them to tell me what they find and how they plan to fix it.

I'm finding it difficult to be here. The staff is wonderful, the disorganization is frustrating, and not having a bathroom in the room is maddening. I don't like to leave him unless he's sleeping so I'm trying to coordinate my bathroom trips, meal runs, and pumping sessions with his internal clock. I'm learning to really multi-task when Shawn is here so I can meet all of my needs while he stays with the baby. This morning, I didn't eat breakfast until he came at 11:30. I was hungry, but mostly I just really needed coffee! :)

We have had some positives though. The nurse came in to check his vitals at 4:00 a.m. and I decided to go to the pumping room. I came back to her holding my wailing baby. The second he heard my voice, he instantly calmed. I didn't even know he knew I existed! He is definitely showing a preference for both Shawn and I. Shawn passed him to another nurse while he fixed a bottle, and he would have none of it! That bottom lip started puckering and then he lost it.

I was doing some belly time with him and he suddenly rolled over. He's done that a few times, but it's never been intentional. This time, when I put him back, he immediately rolled over again! Yeah! Now he does it every time we place him tummy down. He gives us a huge grin, like he's pretty proud of himself, too.

Hopefully, we will come home tomorrow evening, but I'm not holding my breath.

Terrifying!

There have been two times that I checked on Eon in the middle of the night and thought he wasn't breathing. A gentle nudge was all he needed and he'd flinch and breathe and I thought maybe I'd imagined that he wasn't. Until last night. I woke with a start and went over and laid my hand on his chest. No movement. I slid my hand lower and still didn't feel or hear anything. So I gently shook him. Nothing. Shook him side to side harder and still nothing. Panicked, I picked him up and as I lifted him from the crib, he startled and loudly inhaled.

I held him the rest of the night and didn't sleep. Took him in to see the ped today who checked him. (He looks great!) The ped called the developmental ped at the Ds clinic and they recommended admitting him today for a full work-up. Only, because it's Friday, they wouldn't really do anything until Monday. Worried about secondary infections and medical screw-ups, I talked them into a home apnea monitor for the weekend and he'll be admitted Monday morning.
Terrifying! Please pray for peace for me and safety for him.

Feeding Woes

This morning Eon took 6 ounces of thickened milk instead of his usual 4. I've noticed him wanting more in the last two days, but I'm not sure if it's a growth spurt or he's just needing more calories because he's getting older and bigger. I've never had a bottle-fed baby before, so I feel like I'm floundering here.

The problem is that I am not making enough milk for him. I've been exclusively pumping since he was 3 weeks old and had the swallow study. I know other EPers who pump and have freezers full of milk. At first, I probably could've done that, but it didn't make sense to me to continue pumping every two hours and store up milk that I'd never use, so I settled into a routine that allowed me to pump just enough to keep up with his needs. Until now.

I need to pump more frequently, but who has the time to do that? It was easier to pump every two hours when he was tiny, because no one expected me to do much. Now, however, our lives have returned to the "new normal" and everyone is involved in their various activities. I'm expected to feed them all, and keep up with everything else...you know...little things like the education of my children, laundry, bookkeeping for the business, baths, housekeeping, etc.

I don't want to transition him to formula. I'm still hopeful that he will one day be able to nurse (although that hope is waning). I also know that breastmilk is the best to help him stay healthy. And, last but not least, formula doesn't seem to agree with him. He's spit up and struggled more with constipation when he's had it. (He rarely spits up.)

I guess I just need to suck it up (or out, as the case may be) and increase my pumping sessions. Yet more television and fast food for my littles won't kill them, will it?

Regrets

The following is a post I wrote on the Down Syndrome Pregnancy board at babycenter.com.

We did not have a prenatal diagnosis of Ds, although we did have some markers. Still, when Eon was diagnosed (before I even had a chance to hold him...grrrrr), it was a shock. A wave of emotion and fear hit me, the likes of which I'd never experienced before. Most of that fear and sadness abated as soon as I held him, but some of it clings still.

It's different, now. The fear is related to all the things that can still go wrong with him medically, the threat of anything that might take him from me. The sadness is related to the fact that I was ever afraid or sad to have a child with this diagnosis. I regret my sadness and fear. Is that even possible? To regret an emotion that you cannot control?

This child and his life are nothing to be sad about or afraid of! He is wonderful and perfect. He is his own little person and he is an amazing blessing to our whole family. His life is "normal", except he gets more attention than his siblings did - partly due to therapies and appointments, but mostly due to five siblings who refuse to leave him alone. :)

Two days after his birth, DH bought me a willow tree statue of a little boy holding a balloon in the shape of a heart that says, "Hope". I remember bawling when he gave it to me, because that summed up exactly what I was clinging to. Hope. Hope that he would be ok. Hope that he would be high functioning. Hope that others would love him as much as I already did.

It was a hope born out of fear. I just noticed that statue again. I cried again, but this time for a different reason. It represents to me all of those bittersweet emotions I experienced at Eon's birth. It makes me sad that the diagnosis of Down syndrome was such a monster in my mind, when, really, it's such a little part of life.

I still have hopes for Eon, of course. But they are more in line with what I hope for my typical kids. I hope that he has a strong faith that he can communicate effectively. I hope that he is a blessing to those around him. I hope that he will grow to be a responsible adult and/or be the best "Eon" that he can be. Most of all, I hope that he has a special love for his momma!

I want to encourage you, you brave mommas with a prenatal diagnosis. It's ok to be afraid, but soon you will realize that your fear is groundless.
Blessings to all of you, and Happy Mother's Day!

Difference is an Artist's Game

This is beautiful! I have to agree with this young girl.

www.youtube.com/watch?v=MO911lWVGpQ...

Eon got to meet Grammy and Grandpa for the first time today and I didn't take one picture! Egads! They've been in the Everglades for the last six months (Grandpa was a park ranger) and we were so busy looking at pics, I didn't take any. Ugh. Eon hadn't napped all day and finally fell asleep about a half hour before they arrived. Needless to say, he was not his charming self. But Grandpa says he's a keeper! :)

Finally, some pics!

Finally uploaded some pics of the little guy! He's smiling more and more, although they are usually directed at his mobile or Mr. Fan. He's also starting to suck on his hand. His oldest brother, Ben, sucks on his two middle fingers, leaving his index finger free to stick up his nose. Hoping Eon doesn't pick up that little trick!

Shortly after Eon's birth, I discovered a message board on babycenter.com for moms who have kids with Ds. It has been such a blessing! We discuss concerns, support each other, and brag on our special kids. Because I surf the net while pumping, I spend a lot of time on the computer. I've discovered that there are message boards or "communities" for just about anything you can think of. There's even one for those of us that exclusively pump. :)

Last night, I discovered one for those who have chosen or are choosing to terminate their pregnancies because of medical issues with the baby. Oh my. I wish I hadn't read the messages. Most of them aborted their babies because of a Down syndrome diagnosis. I feel sick. One woman posted because she is overcome with guilt and recently had a miscarriage. She was wondering if karma had something to do with her recent loss. All of the other women were quick to assure her that she did nothing wrong. In fact, according to them, she took the high road and was completely selfless in taking the life of her baby, so it didn't have to suffer. I have been devestated since discovering that the termination rate for prenatal diagnosis of Ds is 90%, and yet, even that did not prepare me for encountering these women. The lies they believe are many.

I couldn't help myself. I sent a private message to one who has an abortion scheduled for next Wednesday. Her baby, too, has Down syndrome. I told her how wonderful these kids are and how much they can accomplish. I told her I understood her fear, that I'd experienced it, too, but that it will disappear. I asked her to give her baby a chance. I've not heard back and I don't expect to.

As I was writing the truth about Ds, that these kids can accomplish so much, I was struck with the realization that therein lies the problem. We only value people for what they can do. I was trying to convince someone that her baby deserved to live because his defecits will not be that bad. If he were diagnosed with something that limited function more, I wouldn't have had a leg to stand on. How do you communicate to someone that they should value life because it's life? How have we gotten to this point that we have to?