Friday, March 26, 2010



(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's a tragedy." "That's like saying leukemia or other diseases are cool."

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


(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?



(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


("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


(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



(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



(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


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


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.

Tuesday, March 2, 2010

In Defense of Homeschooling

Because of my last post, I feel the need to spend a few minutes defending homeschooling...only because I won't actually say any of this to the naysayers in real life.

Here are some of my answers to the questions that we get: "Aren't you worried about socialization?" The definition of socialization is: a continuing process whereby an individual acquires a personal identity and learns the norms, values, behavior, and social skills appropriate to his or her social position. Hmmm. I don't know about you, but I think I'd rather my 6yo learn norms, values, and behavior from me, instead of a roomful of other 6yos.

I think what they mean to say is "What about socializing?" The definition of socialize is: to associate or mingle sociably with others. I remember from my school days getting reprimanded for this very thing, but maybe school is different now and your supposed to talk in class? Anyway, my kids get plenty of opportunities for social interaction, and they are very good at it.

This actually brings up one of my favorite benefits of homeschooling. Kids are not relegated to interacting with same-age peers all day. They excel at relating to individuals of all ages and enjoy the company of adults, as well as children. My kids and their friends are not hung up on ages and grade levels of their friends. The older girls have a group of friends that range in age from 10-14 years. They are close with one another and the 10yo (my Ellie) and the 14yo are just as close as any other members of the group.

Speaking of Ellie, she tests at or just below grade level. Someone outside looking in might decide that she is the poster child for anti-homeschooling. However, we are, in fact, very proud of her success. Ellie has ADHD, dyslexia, dysgraphia, and probably a few learning issues that haven't been diagnosed. Because we homeschool, we have been able to teach her in an individualized way that capitalizes on her strengths while working to overcome her weaknesses. I am convinced that she would be much farther behind in a traditional school setting, and would most likely have very little self esteem. Instead, she is a very confident girl who loves to learn. It has been a struggle to get here, especially on the heels of her gifted older sister, but we've worked at finding just what works with her and are proud of her success.

A huge benefit to homeschooling is flexibility. We can schedule school around any event, even as simple as a sunny, 50-degree day (after months of teens and twenties) that just begged for us to venture out for a walk to the park today. Because we don't have crowd control issues and I only have a few students, we are able to accomplish the bulk of schooling in about 3-4 hours. That leaves a good deal of the day for chores and play. Last year at this time, Michaela was able to fly to the Everglades and spend three weeks with her grandparents learning about the ecosystem. Her grandfather, my dad, was a park ranger there. It was a wonderful adventure for her as she loves nature above just about everything.

Another pro is that I get to be with my kids all the time. That's also a con, too, depending on the day. :)

I'm often asked if I intend to homeschool Eon. I don't have an answer for that. It's so hard to imagine my baby as school age and, frankly, I'm just enjoying my time with him. We'll cross that bridge when we come to it, but my inclination is to say probably least not initially.

We take it year by year, but I do intend to continue homeschooling through high school. We live in an area with a huge homeschooling population with tons of alternatives, sports, band, art classes, choir, etc. I'm intrigued by our university's online high school courses for college credit option, too.

We took this year off from our homeschool support group because of therapy conflicts. We are so excited about going back next year. I feel like we "went to ground" getting our bearings after Eon was born. It's nice to feel like we can begin to add in all the extras that help round our childrens' educational experience.