Out of Left Field.

Ever have a smooth day when all of the sudden, out of left field, comes something you were completely unprepared for? 


We had one of those rare days where we weren't completely swamped with patients and could actually leave the building for a real lunch break, today. Most of us took advantage of that fact.


As it often does, conversation turned to marriage and family, with the single gals fielding questions about marriage and the married gals fielding questions about children. Only 2 of us in the group actually have children. We weren't fielding questions at all. ;)


The conversation took a turn and left me feeling as if I'd been sucker-punched. 


One of the single gals declared, "I just want to have a child before I'm 35." She was asked, "Why 35?" and my stomach started to churn a bit. 


I knew what was coming.


"No offense, Tara, but I don't want a Down's baby."


Rationally, I understand where she's coming from. She's young and is lacking the experience to see that life is not so easily controlled. She has no children and doesn't yet understand that all children have special needs. She doesn't have the spiritual wisdom to know that children are a gift, not a right, no matter how many chromosomes they sport.


Emotionally, I was a bit undone. I know what she said, but I heard, "I don't want a child like yours. He's not good enough. I will avoid one like him at all costs." My momma bear instincts were rising up and I'm afraid I was rather snarky in my response.


"You do know," I said pointedly, "that 80% of babies with Down syndrome are born to women under the age of 35, right?" She did not. The rest of the conversation is a little fuzzy as I tried to get control of my emotions.


Eon is not a mistake. He isn't a tragic accident. He is not a statistic to be avoided, or worse, a problem to be terminated. He was born in the image of an Almighty God who chose for him to be here. He is a gift. I am blessed to be his mom!


Honestly, it is harder (in some ways) to parent a child with Down syndrome. I'm sure even more complications will arise with age. 


But, I wonder...how many difficulties are a true result of the extra 21st chromosome, and how many are simply a result of our culture? If ignorance, discrimination, self-absorption, and a general sense of entitlement were not part of our societal norm, would it be easier to raise a child with special needs? I think it would.


My life would be easier if I didn't feel like I had to defend my child's very right to exist. If I didn't feel like I had to prove to everyone how very worthy he is of acceptance, I could relax and enjoy him. My life would be cake if I didn't have to counteract basic ignorance of Down syndrome that I encounter almost daily (Ex, this week alone: Ds is caused by vaccines, only women over 35 have babies with Ds, "they're all so happy," "most of them can't talk," "you can teach them to read?", etc.).


The only frustration I have currently that is actually related to an extra copy of the 21st chromosome, is that Eon can't yet verbally communicate with us and I am certain that he one day will. (He's only 2 1/2.)


I wish that she could truly see how this child has my heart. How he has enriched my life in ways the "typical" children cannot. How he embraces life and expects us to do the same. How he is so very much like his typical peers and his differences only enhance him; they do not define him. 


She really doesn't know what she's missing.

Maybe he's just 2

Lately, I've been struggling with Down syndrome. At 2 1/2, Eon has rockin' gross motor skills and does pretty well with self-feeding and other fine motor tasks. Speech, however, is a whole 'nother ball of wax. 


He used to have words. Up to fifteen, in fact. I don't know where they go, but they're gone. We no longer hear, "gallup, gallup, gallup" when he wants up or "goggie" when he sees the family pet. We don't hear "ook" when he wants to be read to. Those words are just gone and they've not been replaced.  He continues to sign and adds to his signing vocabulary almost daily, but he doesn't attempt to speak. He seems lost when asked to imitate sounds or words, too. It breaks my heart. There are so many choices and ideas when it comes to speech. So many things to try and so little time. I don't know where to put our focus because no one has done any research into best speech practices for our kids. What if we waste our time pursuing something that won't help and ignore something that will? I'm looking into prompt therapy, sight reading, augmentative communication, or stopping signing altogether in hopes it will encourage spoken words.


What he does do when he's excited, frustrated, bored, hungry, feeling left out, or any other emotion is yell, "MOOOOOOOOW!" often repeatedly. Shushing him doesn't help. Whispering back doesn't make him stop. Telling him a firm, "NO" doesn't work, either. Honestly, it sounds a lot like a large, distressed cow. And it makes me cringe. He sounds very much like a person with special needs.


My reaction reveals a lot about me. It uncovers a boat load of pride and prejudice which have nothing to do with the classic novel. I'm embarrassed that my son makes noises that draw attention to him and the rest of us. I'm ashamed that I'm embarrassed. I'm frustrated because I don't know how to make him stop. I'm mortified that it reveals a prejudice about me. Why is it so important to me that he sound "normal"? Why do the looks of pity or irritation that we receive bother me so much? How can I expect other people to accept him, when I'm struggling to accept him, myself? 


And then it occurs to me. I have had the occasion to parent a 2 year-old five other times. They have all been really good at being two. I have not enjoyed my outings with them. Their behavior was obnoxious and often mortifying. They were unpredictable and made me question my parenting skills. They caused people to stare with their tantrums. I received looks of pity and irritation. I was embarrassed.


Why should my experience with Eon be any different? Have I bought into the myth that people with Down syndrome are all "so happy"? Or did he just spoil me by being such a good baby? Why do I insist on making everything about Down syndrome? 


Maybe, Eon's just 2...and he's really, really good at it.

Siblings and Down syndrome

Tali, 7, spent the evening playing with Eon until he had to go to bed. Then she picked up her baby sister and said, "You don't have Down syndrome, but that's okay. You're still cute!"...as if she was consoling her. She also informed me that I should have another baby because she needs a sister with Down syndrome, too. :-)

These moments bless me. I love it when my kids seek out Eon to play with or just be with. They truly love him, which I knew they would, but they also like him. He is enriching their lives. He is very much included in this family. 

The bigger boys (6 & 4) have yet to really see him as different. They ask me occasionally why he can't talk, yet, and know that he has Down syndrome and gets therapy, but it doesn't change how they interact with him. He is always in on the action whether they are building tracks in their room or sliding down the stairs in totes.

Tali obviously knows he has Down syndrome. She finds it delightful! She loves to mother him and teach him new signs. He's her favorite hide and seek partner, too. If it were up to her, we'd have a dozen kids with Ds.

Ellie, 11, has a better understanding of it. She adores Eon and is very protective of him. She gets excited when he masters a skill he's been working on and gets frustrated for him when he struggles. She has developed a love for all people with Down syndrome and is very comfortable around people with any disability. She asks the most questions and is, therefore, the most knowledgeable about it. She stands by her statement made when he was weeks old that she will take care of him when we're gone. 

Mick is 14 and at the age where different is not a good thing. Yet, she is very practical and has a strong personality. At a time in her life where she could be ashamed of her brother and want to hide him, I watch her reach down to pick him up while talking with her friends. At the grocery store, when he loudly vocalizes, I see her shush him and then tickle his belly just to hear him laugh. When he kicks up a fuss at nap time, she often asks, "Can he please just stay up? He can watch tv with me." And then I watch as she settles him on her lap and turns on his favorite show.

Keturah, almost 9 mos, will never know a life without Down syndrome as part of it. She just knows Eon as the big brother who used to steal and throw her pacifier, but now just kisses her and brings her toys. 

My children amaze me. They have taken the changes to our life in stride. They accept Eon for Eon, mildly curious about the things that make him different, but fully embracing the ways he is the same. 

We are blessed.

Tell All Tuesday!

This little guy needs a home and a family. Could it be yours? 

Soon, (if it hasn't happened, yet) he will be transferred to the mental institute. His head will be shaved and he will likely be tied to a crib. When he cries (and he will, at first, until he learns it won't do any good), he will be ignored or abused.  He will sit for hours in his own waste with no stimulation and nothing to do. 

Given a family, he could thrive! We've seen it happen time and time again. These kids do very well when given a chance.

Please share this. Post it on Facebook, tweet it, blog it, tell people irl, send emails, etc. Please, let's find Harlen a home!

$5 Friday!

Today is $5 Friday for Harlen. Can you spare just $5 measly dollars for a boy who has no one? Maybe you think, "$5 is just a drop in the bucket. It's really nothing compared to the need." You're right. It's not. But a bucket is simply filled with lots of drops. If enough people just take the time and a little bit of cash, soon the bucket will be full.

So, go ahead. Be a drop in the bucket for Harlen! This little guy will soon be transferred to a mental institution. There, he will likely face abuse and neglect that will kill him. 

Rescue those who are unjustly sentenced to death; don't stand back and let them die.  Don't try to avoid responsibility by saying you didn't know about it. For God knows all hearts, and he sees you. He keeps watch over your soul, and he knows you knew! And he will judge all people according to what they have done.  Proverbs 24:11-12 (NLT)

Sorry, but now you know. There is a little boy in a far off land who is headed for death. He is innocent and there is something you can do to save him. God knows you know. 

$5 is not much, but it can be everything for this child!

Please give here, today, right now, before you forget! 
(And share this on Facebook, Twitter, your blog, wherever you can think to.) 

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? :)