Dear Harlen,

You are a little boy with an extra chromosome. Because of it, you have neither a mom or dad, siblings, grandparents, or a church family. You have no toys, clothes, or even shoes that are yours alone. You have blond hair and blue eyes. You are five-years-old.

That is the sum total of what I know about you.


I don't know what makes you smile or if you ever laugh so hard your belly shakes. I don't know what comforts you when you're sick. I don't know if you dance when music plays or if you wave your hands like your directing the choir. I don't know what your favorite food is or if you like the color red.


I do know that I have failed you. My heart aches over my failure and I've lived in a haze of guilt for several months because of it. I do know that my guilt in no way compares to the misery of what's in store for you as you transfer (or have already transferred) to the mental institute.


I agreed to be a 5-5-5 Warrior for you, to advocate for you, and raise money for your adoption, to tell the world about your fate and maybe even find you a family.


I am a coward.


I wish I could say that I got busy or forgot. Even those lame excuses would be better than the truth.


The truth, dear boy, is that I am a coward. I was afraid of so many things. I was afraid that people were sick of hearing me go on and on about orphans. I was afraid that people would think I was only friends with them because I wanted their help. I was afraid people wouldn't care.


But mostly I was afraid I would care too much. It hurts to love an orphan. It hurts to allow my heart to be broken over things I can't control. It's hard to have one part of my heart in an unknown land and still deal with the here and now. 


The reality that I can't protect you is hard for me to take. The harshness of your world is hard to reconcile with the ease of my own. 


Added to that is my own foolish pride which knows that I'm not creative enough, persistent enough, or eloquent enough to move others to give with their hearts, to feel your plight, and to tell their friends. I couldn't do it perfectly, so I settled for not at all.


I am so sorry. I am weeping as I write this. The middle-aged mom of many from the rich country of America, ashamed to confess her failings to the poor orphan of Eastern Europe. 


It is my hope that one day you will hear these words. I hope that you will sit on the lap of a woman who smells like lavender soap and calls herself "mom" and she will whisper these words to let you know that someone, in her own warped way, really cared about you when you were all alone.


I also hope that others who read these words will care and give and act to get you here. 


I am not afraid, anymore, sweet boy. I know that you are not really alone. The same Jesus who is here with me is there with you. He will not give either of us more than we can bear with His help. He will give me the strength to fight for you and you the strength to hold on until someone comes for you. He will hold me as I love you from afar, and hold you as you wait.


Be strong, little one.
Love,
Tara 
(If you would like to donate for Harlen, in spite of my failings, I would be so very grateful. Every little bit helps. Please go here to give.)

Signing, picnic, and VBS musings.

We recently counted up Eon's consistent signs and found there are about 40 that he uses regularly. Most of them are close approximations and some are so similar to each other that we have to pay attention to context (apple and candy, or bug and bird, for examples.) I continue to be amazed by how well he communicates with facial expressions alone, though. Those big blue eyes communicate volumes!

We went to the Down syndrome Indiana picnic last weekend and really had a good time. It's fun to connect with other families and see all the kids. Of course, I can't seem to stop myself from comparing him to other kids with Ds. Seems he's doing really well, especially gross motor wise, thanks to the wonder PT, Jill. She works with him at the playground, frequently, and now he's convinced there is nothing he can't do. Which is great...and scary! 

It is VBS week at church this week and for us, it's a family affair. The big girls are assistant leaders, Shawn does sound, and I work the nursery while the middles all participate. I enjoyed learning a bit about Eon last night. He is so comfortable with his brothers that he tends to be a little "in your face" with other kids. He was trying to play with a little boy about his age and he started off by tickling him. The other kid was having none of it, and I encouraged him to back off a bit. Then, he tapped the other kid and ran away, wanting to be chased. Other kid was still intimidated by this. Finally, he found a roll of duck tape and threw it, then chased it. Other kid watched for awhile and joined in and they played together.

At first, I was cringing that Eon was scaring the kid. It was obvious the boy didn't know what to do with this odd kid who doesn't speak his language. But, then I was happy that Eon seemed to sense that and adjusted his approach. He certainly isn't one to be ignored!

I also realized how nice it is that, for the most part, I am perfectly comfortable with how everyone loves and interacts with him at church. He is accepted just how he is and I hope that will always be a safe place for him and us. There are a few exceptions. There is one gentleman who means well, but I always get the vibe that he has to "try" to interact with Eon. He'll pat him on the head and say nice things, but I get the impression he's thinking he's such a great guy because he was nice to the disabled kid. Do you know what I mean? Kind of like prejudiced people who say, "Some of my best friends are black"?

Have I mentioned that I'm a little overly sensitive? :)

What's it like? (Part 2)

You can find the beginning of this post here.
No one can truly appreciate another's life experience. Who should decide whose life is valuable?


The Angelina Jolies of the world - with their excessive wealth, nanny for every child, globe trotting lifestyle, etc - might consider my life to have less value than theirs. 

We work hard for every dime we bring in (and by "we", I mean Shawn because he certainly works harder than me. And brings in more dimes.:) We have a small, starter home...that we've lived in for 13 years and have squeezed seven children into. We are raising these kids without outside help, nor do we have a housekeeper, a driver, or a chef. We drive vehicles that are over 10 years old. If the fuel pump goes out in the mini-van, we just don't drive it until we can afford to get another. Our vacations consist of camping in nearby parks in our tiny little camper...that leaks. 


But our reality is so much MORE! We have love and laughter (daily). We have great friends and actually enjoy the work or our hands. Our children are a blessing (all of them) and we delight in them! While I prefer 5-star resorts, gourmet coffee, and theatre performances, I've learn to LOVE camping, McDonald's ice cream cones, and the $1 movie. :) My life is full and rich, even though, at times, suffering has been a part of it. (Who has never suffered?)

Wouldn't have been a shame if the Angelina Jolies got to decide my fate based on the first description?

Just because Eon will never father a child, might not marry, go to college, hold a job, etc., does not mean that he will suffer. Just because his life will not be like mine, doesn't mean he shouldn't have one.

How did we come to this - where we can project our hopes for our own lives onto our children to the point that, if they can't meet them, we decide that they must die?!?


We give women, in their darkest hour, a list of all the possible health issues their child might face and ask them to make a heart wrenching choice. They are supposed to take a gamble on what kind of life their baby might have based on a list. 
It breaks my heart.


The list never told me that my child with Down syndrome would:
* make me laugh every single day
* eat with gusto everything his momma cooks
* learn to use sign language
* wrestle with his brothers
* be everybody's favorite sibling
* be such a great problem solver
* introduce us to so many wonderful people
* love music, Blue's Clues, and pizza
* have a smile that lights up the room
* be so active (and fast!)
* have so few health issues
* charm everyone he meets


No list of diagnoses and potential problems could EVER accurately describe the life of a person! I don't know what the answer is. I do know that education and advocacy help. So does prayer.  I'll continue to do both. I hope you will, too.

What's it like? (Part 1)

Someone recently asked me what having a child with Down syndrome was really like. She freely admitted that when they were considering having kids, they stated they would terminate if found to be carrying a baby with Ds. She did clarify that, after having kids, she is appalled at having had that thought.

When people ask me about Eon, I often don't know how to describe my feelings toward him. I certainly don't want to present the idea that I love him more than the other kids. I don't. Yet, there is something special/different about my feelings toward him. My friend, Mary Grace, sums it up perfectly in describing her relationship with her own child with special needs. "He has my heart in a way the others don't need to," she says.

Exactly.

I'm sad that the world is sold a bill of goods when it comes to special kids. I've heard women say that they couldn't handle parenting a child with special needs because of finances, lack of support, or because their life was already too complicated. 

These poor women will never know what they are made of. They will always see themselves as weak or as victims.  They will never experience the joy of plunging in and learning the water is neither as deep nor as scary as they once thought. They will never come to the realization that, while sometimes the water is murky, there are moments of great clarity and supreme beauty. They will only know that they ran from fear. And a small piece of them will die, too.

It makes me sad.

Currently, Down syndrome is diagnosed during pregnancy one of two ways: CVS or amniocentesis. Both tests are invasive and both carry a significant risk of miscarriage. There are screenings that are done through a blood test, but they only convey odds of T21 and are incredibly unreliable. The only way to know for sure is to have the invasive testing or wait until birth.

Until now.

All of my friends in the Ds community already know about this, but a new prenatal test for Down syndrome has been introduced in Great Britain. It is a simple blood test given around the 12th week of pregnancy. It is reported to be about 99% accurate in predicting Down syndrome in utero. It should be available in the US by April of next year.

I find this terrifying.

Currently, there is a 90% termination rate for confirmed Down syndrome pregnancies. Keeping in mind there are many women like me who know they have increased odds, but refuse the testing, this number is still unbelievably high. Many, many women are simply surprised at birth to discover their new baby has Ds. They either declined the screenings, or the screenings showed they were at low risk.

What will happen when testing for Down syndrome becomes routine and women discover, perhaps before they've even announced their pregnancies, that they are carrying a baby with Down syndrome? I'll tell you. They will abort in ever increasing numbers. The number of babies with Down syndrome born each year will drop dramatically.

It breaks my heart.

These babies are being targeted for termination. Don't let anyone tell you that this testing is to help expectant parents to prepare. That is a wonderful side benefit for those who choose to carry to term. But that is not the intent of this test. It's just not.

I've heard too many stories of my friends with a prenatal diagnosis (and many with just increased odds) being pressured to terminate. I've read too many comments on articles about this, denouncing the "cost to society" those with Down syndrome represent. (Lest you think I'm being dramatic, I calculated the ratio of positive to negative comments about Ds on a mainstream article. It was around 1:8...for every one positive comment, there were eight negative ones, usually focused on "suffering" and "burden".

(To be continued...) 

Update on KJ & Eon

I spoke of our concerns about Keturah in my last post. I'm happy to report that her echo came back normal and she appears to be gaining some weight from the supplementation. Yay! Our follow-up visit is on the 22nd, so we'll see where we go from there.

Eon is doing great! He is 2 years and 4 months, now. He is so typical in some ways...asserting his independence, throwing the occasional tantrum, running away when called, hiding when eating stolen candy, wrestling his brothers, pretending to "die" when shot with a toy gun, etc. 

In some ways, Down syndrome seems more apparent than ever before. We are working hard on "inside voice" as he vocalizes loudly in public sometimes and I cringe. He's responding well to that, and will quiet down when I remind him (unless he's tired or hungry).

He is starting to really imitate more and more signs and we are even seeing him request things not given as a choice. For example, I asked him if he wanted to watch Barney or Blue's Clues. He thought for a minute and signed, "Signing Time". I didn't even know he could do that one! The other day, he heard the door slam and thought it was Shawn. He signed/said, "dada?" I told him that Daddy wasn't home and he signed, "Where?"

He seems to have trouble with the motor planning involved in signs and some issues with proprioception (knowing where his body is in space). Sometimes he'll attempt a sign and do it on the wrong part of his body, or make it look just like another sign when he clearly means the new one. Also, lol, he can't pick his nose. :) He will put his finger up there, then has to move it around to even find his nose, let alone the nostril, and by that time, I've put a stop to his intentions. Cracks me up!

We are adding OT back into the mix in hopes of helping him with these issues. (well, not the nose picking. LOL!)

Gross motor-wise, the kid has got it going on. He has some mad sliding skills. I was so impressed at our first outing to the park and he was able to climb right up to the slide, turn himself around and shimmy down, and then exit the slide to do it again...completely by himself! He's also learning to run and jump in PT. Even without full-on running, that kid is fast!

His receptive language skills are really good. He seems to know what we are saying, even when we wish he didn't. The kids like to quiz him. For example, they'll say random words and then throw in a food item. He'll say, "Mmmmm" every time he hears a food choice, even if it's something we rarely have! He also has very keen ears for the words "nap" and "quiet time" and will immediately start fussing if we utter them. :) 

Here's a pic from a Babycenter.com meet-up. Eon had a wonderful time hanging with the princesses! :)

Fear, worry, fretting

So the last few years have been something. We had Eon and the diagnosis of Down syndrome and all the appointments/specialists associated with that. Then he had a vascular ring repair. We've also had one child diagnosed with anxiety disorder after baffling behavioral issues and another started medication for long-diagnosed ADHD. I had a kidney stone in pregnancy, and after, with resulting hospitalization and lithotripsy.


It should not have come as a surprise, then, to discover that there may be a problem with our littlest peanut, Keturah (KJ). She has been a slow grower from the beginning. She weighed 7lb, 11oz at birth, but was slow to put on the ounces and was just over 10lbs at 4 months. I was concerned; the doctor was not. She was plotting on the chart in a regular way and there was no cause for alarm.

Until Thursday, at her well-baby 6-month check, when she had gained only 2 ounces. Suddenly, her weight was no longer even on the chart and we were discussing failure to thrive work-ups. We decided to supplement for a month and reassess. Until he heard her heart and detected a murmur. "Have I heard a murmur on her before?" he asked. Nope. And he scheduled her for an echo-cardiogram.

I took it all in stride. In my Down syndrome world, echos, heart issues, and supplementation are all the norm. I am comfortable discussing these things. Only, this is not my hearty kid with Down syndrome. This is my tiny, delicate princess with the typical number of chromosomes. And I am terrified.


In retrospect, I can see so many signs for concern. She has always been "my putziest nurser" I've often said. She takes forever to finish feeding and usually falls asleep long before she's done. She sweats more than the others did. I can see her freakin' ribs when I change her diaper. (DUH!)

So now we wait, with Dr. Google close at hand and all the terrifying possibilities. 


I find myself worrying and fretting.


Have I learned nothing over the past two years?!? God's got this. This does not take Him by surprise. Worrying doesn't do any good and cannot change the outcome of any situation. In fact, my life verse is Psalm 37:8b, "Do not fret - it only causes harm." (Other people get really cool life verses. God is very practical with me. :) 

God loves my little princess even more than I do. He has a plan for her life, as He does mine. His grace is sufficient for me.

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.  Phillipians 4:6

Happy Mother's Day!