Passion #3

I have mulled this post over in my mind and written and rewritten it and I'm still at a loss as to how to communicate what my heart so desperately wants to say.

My third passion is to reduce the number of abortions based on Down syndrome. The current numbers stand at 90%. Ninety-percent of women, when shown by amnio or cvs to be carrying a baby with Down syndrome, choose abortion. Keeping in mind that there are many of us who, when faced with indicators of Ds, chose to forego further testing, it is still a staggering number.

I recently read someone's comment that those who choose testing are only those who would abort, anyway, however, I know that's not really accurate. I have read the stories of many, many women who swore going into the test that there was no way they would consider termination and yet, that's exactly what they did.

Why?

Fear mostly. Raw terror. Not having an actual baby to reassure them, they are terrified of the unknown. Most parents of kids with Ds that I have contact with propose that education and exposure are the answer. If we just show the world how wonderful our kids are, people will get it and the fear will go away. I'm sad to say that I don't buy that.

We are a society of convenience and ease. Our sole motivation is to make our lives easier. Easier is better in western civilization. Having a child with a "disability" is not considered easy and therefore, must be avoided.

Though not easier, our lives are better because of Eon. He is a joy and delight. I could repeat this until I was blue in the face, but most people will only take note of the extra appointments, his earlier heart surgery, and his developmental delays. They will rejoice with me that I consider myself blessed..... and be secretly glad that it's me and not them.

How can you possibly convince people that you really love having a child with Down syndrome without it sounding like you are just trying to make the best of a difficult situation?

You can't.

I so wish I could see this as a simple education problem, but I can't because it's not....its a spiritual problem. People always see what they want to see. Therefore, they will see suffering where none is, they will see hardship when none exists, and they will not see joy where it is in abundance in order to justify their behavior and pacify their hearts, so that they can do what is easy and convenient.

There is one who blinds their eyes, who has come to steal, kill, and destroy. They are deceived and no amount of education will prevent their hearts from believing the lies they so readily embrace.

It is not just the unborn that suffer from the deception. I have read the stories and my heart also aches for the women who have chosen wrongly and now must face that choice every day. They are often overcome with grief and guilt. They will never be the same.

Senseless is the only word that comes to mind.

So what do I do with this passion of mine? I still educate and advocate every chance I get. But, I also pray, fervently, for those who are making the choice and for those who have already made it.

Down syndrome clinic visit

Eon went for his one-year visit to the Down syndrome clinic at Riley, yesterday. For the first time, it didn't lead to any other appointments or tests. I was beyond thrilled! Everyone told me that all the hubaloo would die down after the first year and I guess they were right. The doctor actually wrote, "Looks awesome!" on his follow-up sheet! :) We go back in 6 months. Yay!

He had his well-baby visit at the general ped's office today. His pediatrician, Dr. Kidd (isn't that a perfect name for a pediatrician) said, "Honestly, Tara, I think you could take him to any doctor's office and if you didn't tell them he had Ds, they wouldn't know it." That really surprised me because I really "see" Ds in Eon. Dr. Kidd says that he does, too, but only because he knows he has it. Interesting and a little frustrating. I talked to another mom at the Ds clinic yesterday and I realized half-way through the conversation that she had just figured out that Eon had Ds, too. I would like for other families to have an instant connection with us. I swear we need a secret handshake or something.

Eon had another round of shots today and cried when he got them. Last time there were no tears and it kind of freaked me out, so I was actually relieved to hear him cry. He was over it by the time the nurse put the band-aids on him, though. He's not one to hold a grudge. :)

Passion #2 UPDATE

God, in His great mercy, has provided a family for Sasha! Yay, God! ALSO, Marshall has one, too!!! AND, another little squirt, Charlie, who is already five and very much at risk and has been in my daily thoughts and prayers, has one, too!

When I told my kids about Marshall and Charlie, Tali (6yo) said, "What?!? I thought we were going to sell brownies at church so we could take them!"

We had talked about having a bake sale as a way to raise money for the 2010 challenge and, somehow, she got her wires crossed! :)

Passion #2

I discovered another passion when Eon was only a few months old and I stumbled across http://www.reecesrainbow.org/ . It had never occurred to me to wonder about the fate of children with Down syndrome in other countries. But, suddenly, I knew.

And I will never be the same.

I have spent countless hours since that moment pouring over the sweet faces of those children, loving them like my own, and interceding on their behalf. Some of those children have a forever-grip on my heart.

We have signed up to be prayer warriors for Marshall, an adorable 2 1/2 y.o. with blonde hair and blue eyes. Even our younger kids are faithful to pray for a family for him everyday. They are praying for him to get a mom and dad, brother and sister, and a dog and cat. Apparently, a guinea pig is optional. We pray for his caregivers, that someone will take a special interest in him and give him extra attention and love. We pray that he will be comforted when he's hurt or afraid. We pray for his health and we pray for moments of pure delight and joy.

Honestly, I am overwhelmed by the need. There are too many children and too much money is needed for families to adopt them all.

BUT, the "$100 for 200 in 2010" challenge gives me a real focus and a hope. The idea is to have 200 people commit $100/mo this year. Each month the money will go to a different orphan's fund. Our hope is that we can raise the full $20,000 adoption cost for one orphan each month.
The information/background on the challenge can be found here: www.the30dayjourneyforhope.blogspot.com/2009/12/update.html

There are many willing families for these children, but the cost is prohibitive for most.

If you can't contribute $100, give what you can! If enough people give (no matter how small a gift), we will see TWELVE children find a forever family this year!

This month's child is Sasha (orphange #2, I believe). Hurry, the month is winding down!

Passions

When we first got a Down syndrome diagnosis minutes after Simeon's birth, my world changed. Not in the way one might expect, but change it did. I became passionate in the weeks following about several things. First, I became passionate about learning all I could about T21...about what we should expect, early intervention, supplements, possible medical issues, etc. I lived, ate, breathed, and slept Down syndrome. I researched, asked questions, joined a Ds online support board, and read countless blogs of moms who've done this before me.


Interestingly enough, after about 8 months or so, my passionate research of Down syndrome waned. It is no longer "all Ds, all the time" in my brain. And, no, I did not exhaust the literature, just the need to know. I do feel like I have become an expert, but I think my insatiable thirst for knowledge on the subject was more about feeling as if I had some control. Knowledge is power.


Except when it's not.


Control is an illusion. More knowledge about what might happen does nothing to prevent it from happening. More knowledge about Ds will not increase my son's potential. In the beginning, I needed for Eon to be a Down syndrome superstar. He was going to break all the records and meet every milestone on time....


Now, I just need for him to be fully Simeon.

I will continue to learn more about Ds, follow the research, and ensure he receives every opportunity; but, I no longer need to do all that to prove something to anyone, including myself.

Music

Like most babies, Simeon loves music. I have sung to all my babies, but this kid actually seems to like it. If he's fussy (which generally only happens when he's waiting for an overdue bottle), I just break into song to soothe him. He's a huge fan of "If You're Happy and You Know It", but a new favorite is the Hee-Haw classic that starts, "Where, Oh Where Are You Tonight..." He really likes the spitting part. :)

When he was a newborn, my husband read somewhere that the group, ABBA (Of "Dancing Queen" fame) has a huge Down syndrome following....something about the off-beat that appeals to those with Ds? I don't know. But, every once in awhile, Daddy puts on an ABBA song just for his boy. I think we'll have to wait until he's older to see if he really has a preference for it. :)

Ouch!

Eon sustained an injury the other day. His 6-year-old sister was entertaining him while I cooked dinner. She put him on the couch (big no-no) and wanted to take a picture of him, but couldn't work my phone....so she came into the kitchen to have me unlock it. The poor little guy did a face plant into the throw rug. He got a terrible rug burn (more like road rash) across his nose. I would post a picture, but my husband and older daughter assure me that this will never be the "cute little memory" I think it will, and I should just let it go. Personally, I find him adorable with a hideous scab across his nose....although maybe it is a face only a mother can love. :)

Outcomes

I recently read a comment by a woman who is pregnant with a baby with Ds. She has chosen to continue her pregnancy. She wrote, "It's terrible to have to go through this because either outcome (termination or a baby with Down syndrome) is not what you want."

I've been thinking about that for a few days. She doesn't know it, yet, but I think she will one day change her story on that. Simeon, extra chromosome and all, is a very positive outcome, indeed!