Nine Months With Nina

I cannot believe that it has been nine months since Nina has been home. The reality is that almost a year ago we flew to Ukraine, and at times I still feel like we have a long way to go. which I suppose we do! Nine months is not that long looking at the big picture.

In the last week or two, Nina has begun to look at pictures of our family. She wants to see all our family albums. Why? She is looking for herself. She constantly asks, "Where is Nina?" I think she finally is beginning to understand the meaning of family. That we all belong together. She is searching for her past with us.

This morning she asked if she came from my belly (Ellie had made a comment about her and Nichole being inside of me.) I told her she did not, that she grew in a different mommy's belly. Then I told her how Andy and I had found her picture, and how we had fallen in love with her so much, that we flew very far away to go get her. It was sweet to see Nina's face glow with excitement and the understanding of being wanted. A good reminder for me that this little girl has a very fragile past. Also a reminder, that Nina will have questions about what life was like before us, and trying to put the pieces of her life together.

Nina is trying to make sense of her life, and I need to pray for my heart to grow and grow in love for Nina, to chose love even when it is hard to do so, and to remind her that she is wanted, and that she belongs with us. She always did.

I Wish You Would Have Met Her

I watch intently as my grandma sits on her vanity bench, carefully applying her makeup. She puckers up as she puts her lipstick on and it makes me giggle. With one hand she gently touches up her hair while she bats her eyes at the mirror. She is beautiful, and I am mesmerized by her. She looks at me and asks if I want some blush for my cheeks. I nod and cuddle close to her while she applies the pink color to my face. I smile and gaze into her hazel eyes.

My grandma and I sing together in the car. We have our own special and favorite songs. She is the only one that never criticizes my singing. I feel so free, so accomplished. I love our car rides together.

Once, my grandmother gets pulled over. The officer approaches the car and my grandmother bats her beautiful eyes at the young officer. He shakes his head with a smile and tells her to “be careful.” He too, has fallen to her charm. I understand, for I am under the same spell and will do anything for her.

My grandmother sings on the stage at one of her recitals. She wears a long, velvety, maroon dress. A grand piano in the background and a full house of spectators, all gathered to hear her sing. She invites me up on stage and I hold on to her leg. I am so proud of her. And she is mine, my grandma.

We sit on her bed, playing “kitchen.” I think she has just as much fun as I do. I forget that she has a weak heart, and that she needs rest. We laugh together, and I offer to put on a play for her. I perform and she claps for me, she tells me it was the best act she has ever seen.

Sitting on a kitchen stool I watch as my grandma separates the yoke from the white. One smooth motion as she cracks the egg and separates its contents. She pours the yoke into a small china cup and dumps a couple of teaspoons of sugar and hands it to me. I enjoy the sweet treat while she continues to bake. Later, we make flour tortillas together. We like to spread butter and sprinkle sugar on them. It is our weekend tradition.

My parents say I am being disobedient. She asks, “Ellen, won’t you do that for me?” I do, I do in a light year second, no questions asks.

I grow up, and find that I cannot stop talking to my grandma about life. I want to know what she thinks, I want her advice. She listens, she asks questions, and then I lay down with her as we watch a Mexican soap. She needs some rest, but her presence is peaceful, comfortable, and familiar. She has always been there for me.

She greets my husband with a hug and a kiss. She tells him “Pero que guapo eres mi chulo!” forgetting Andy understands some Spanish and loving that she calls him handsome. She says she is proud of me, of how I have lived my life. I want her to be proud.

I see her sitting on a chair looking outside her window, watching as birds fly by. A rosary in her hands and her lips moving. I know she woke up early and has been praying for her family, for me, my husband, my girls. She has always prayed.

Today she has closed her eyes for the last time. She celebrated her homecoming in Heaven, the life of the party. I imagine her hazel eyes sparkled as she met Jesus. Her heart, always weak, has now been restored.

But I miss her. Oh how I miss her. I wish you would have met her; you too, would have fallen to her charm.

It is almost time!

October is just around the corner. And did you know? October is Down syndrome awareness month and it is also when we celebrate Nichole's birth!

In honor of my daughter Nichole and since it is a special month to celebrate those with an extra chromosome, I will invite you to ask any question that you have about Nichole, Down syndrome, parenting a child with Down syndrome, or life with a child with Trisomy 21.

What could you ask? Things like:
-What is it
-Is it contagious
-What causes it
-What is life like...
-What has been...
-What is the most difficult
-What is the greatest...
-Did you think
-I have wondered...
-Would you ever...
-Does Nichole...
-I feel like...

You get the idea.

Please know that there are no stupid questions or comments. Chances are if you are thinking that, someone else might too. It is Down syndrome awareness month so what a better time to ask these questions or share something about these wonderful works of art (people, like my daughter, who have Down syndrome.)

I will try to post every day, and I really do need some ideas! So join me in celebrating people with Down syndrome!

Thanks for your comments, and keep them coming!

The Homeschooling Adventure

"Homeschooling? Me? Never!" This is what I would have told you if you had asked me six months ago.
When it was time to either enroll Ellie in Kindergarten or stick to the plan of one more year of preschool, it seemed like an easy choice. We did not want Ellie to be one of the youngest in her class. Personally I have never met a parent that regrets the decision of waiting, yet, know quite a few that wish they had. As a new mom in this schooling thing, we felt it was better for Ellie to do one more year and follow advice from people we trusted.
But then Ellie said she wanted to learn how to read and write just like her friends. And she wanted to do math. It was not just a little idea, she was really excited about it. But she did not want to get up early and go to school every day.
I always thought that if I homeschooled one of my kids it would be Nichole. I thought Ellie and I having such similar personalities (yes, she really does take after her mother) would fight a lot and just be frustrated with each other.
Well, after five weeks of homeschooling Kindergarten, we are loving it!
We don't push it, we just have fun. Ellie said, "I love homeschooling, it is just mommy and I and we get to work together!" She even asks for it during the weekends.
We are almost done with the alphabet (phonics) and she is doing so well with math! I mean incredibly well! And she is loving it!
I am not sure what we will do next year! Thankfully, we have a few months to figure that one out!
And what else are we doing via homeschooling? A dance class! Yes, I am a dance teacher again. And you know what else? Nina and Nichole get to be a part of it!
And we are loving it so much, that I have some stuff ordered for Nina and Nichole. Who would have known it. Me? A homeschooler?


She Has Syndrome!

"Nichole has syndrome!" Nina blurts this happily out of the blue.
"What did you say?" I ask
"Nichole has syndrome!" She responds while jumping on her knees excited.
"You mean she has Down syndrome?"
"Yes!" She squeals.
"And Nina, remember, you have Cerebral Palsy."
"Yes, yes I do! I have Cereal Pasy! Just like my friend Oksana! And that is so cool!"

I still don't know where this conversation came from, and I am not sure she will always think that having "Cereal Pasy" is cool. But today, it gave me a good laugh!

EKS Acts of Unity

“Eunice Kennedy Shriver Day” (EKS Day) will promote a global call for people to commit acts of inclusion, acceptance and unity for individuals with intellectual disabilities (EKS ACTS). I have been asked to help spread the word about this fantastic day by my friend Gillian (who's post I have copied here, she gets all the credit!)


Anyone can participate with an Act of Unity. You don't need to attend or host a big event. Your Act of Unity can be as simple as:
  • blogging, emailing, texting, and using your social media outlets to spread the word about the day.
  • Change your profile picture to a photo of Eunice (many images in that link to chose from), and
  • use one of her iconic quotes as your status update. Click HERE to hear audio files of Eunice speaking.
  • On twitter post: RT: I pledge to honor @SpecialOlympics by performing an Act of Unity on http://act.ly/2e7 RT to sign.
  • Be sure to post your Act of Unity HERE.
"Every person, regardless of whatever different abilities they may have, can contribute, can be a source of joy, can beam with pride and love."- Eunice Kennedy Shriver

Nina the Leader

Nina got to be the Leader at school on Monday. As the leader she gets to lead the lines, bring a snack (and pass it around) and they get to be special for the day. No big deal really, but it is a big deal for the kids. And it is a big deal when you lived as an orphan and deemed as unworthy because of a disability. It is a big deal when you go to school and the teachers and your friends sing about how special God made you, and how much you are loved.
Nina uses her walker at preschool. I think being around all the other kids makes Nina really want to walk! She was headed down the hall to begin serving the snacks. She did great going around the tables, balancing in the walker with one hand, and serving the snack with the other hand. She chose bananas an chocolate milk.
The picture above is Nina with one of her teachers (which I cannot say enough how awesome her teachers are!) they were singing about loving Nina and God making her special (something like that!)
And my big girl Ellie. Both girls are in the same "group." They actually play together very well at school (and sometimes at home)
When my girls are leaders, I like to come to their school for the day. It was so sweet to see how all the kids look after Nina. Nina has one special friend who takes care of her with such tender care! All of kids are wonderful! They make sure Nina has her walker, they pat her gently on the back, they get things for her. A very sweet thing to watch as a mom. My prayer as a mom, is that Nina and Nichole always have friends like that.

Ellie's Creative Creations

This is Ellie's most recent creation. She used different media to make her picture. She still loves coloring and drawing, but she is going through a stage where that is boring and she wants to do a craft, or something that requires, gluing and pasting besides coloring or drawing.

She is a creative little girl and I am really looking forward the day that our walls are covered with her art. This particular one, she wants framed and put in her room. I think we can do that!

You can see more of her creations by clicking here.

And make sure you don't miss my previous post about Nichole and her rascal activities!

What Do You See?

Look at the picture above. What do you see? First you will notice an ultrasound picture, in case you are wondering who it is, it is Nichole. Next, is a phone. Third in line is the monitor. Last, another phone and answering machine with 10 messages. So what is this picture all about?

We have two phones. One is just a phone, and one is the answering machine. The reason we don't use the answering machine phone is because we are too lazy to put batteries in, and the phone has been dead for about 2 years. So we took the easy route and plugged in a phone with working batteries.

Nichole loves phones, and she has been known to call 911. Nichole has a rule about phones. She may not grab our cell phones or working phone. She is free to play with the old cell phones and with the answering machine phone, that's it! You don't think she gets it? Let me let you in the other part of the picture that I forgot to mention.

The phone you see in the picture? It is the non-working, answering machine phone! Our sweet Nichole has been taking the working phone, and then moving the one from the answering machine over so that we think she is obeying!

Oh! And one more thing to point out about the picture, is that the ultrasound picture of Nichole shows her...smiling! Smiling all along at her mischievous deeds.



The Slient One

Okay, that's a bit of a lie because Georgie is everything BUT silent. The kid can YELL. However, he doesn't talk and thus does qualify for speech therapy. No shocker there.

He had words, at one point: dis, dat, dere, duh, bra bra. He has lost them all, but does say whoo-whoo (train/any moving object). I heard him say bye bye last night and "mow" for cat. That's it. Whoo-whoo is his only consistant word. No mommy, daddy, brother, Joe, nothing.

I'm trying to hit up the signs more and we'll get a formal game plan next week. Until then... I'm tired. Really tired. And I have to teach in the AM. night.

Welcoming Fall

Growing up in Mexico I never really appreciated the change of seasons. I was 17 years old the first time I got to see the beautiful and abundant trees of Minnesota change from green, to deep reds, browns, and yellows. I had fallen in love with the greens and the lakes. But the reds and the warmth were just as inviting.

Today is the first day of Fall. It is beautiful to look outside and see the tress changing colors. The scent of pumpkin bars and apple cider.

And I also look forward to Thanksgiving. Last year we were in Ukraine, this year we will be home!

Happy Fall everyone!

Our Down Syndrome Extra Family

When Nichole was born, I did not know that her arrival to our family was also welcoming us into a new kind of family: the Down syndrome family.

I wrote an essay about our friend's daughter for the book Gifts 2. Still, as I struggled with the diagnosis and as I poured myself into doing research, I found an on-line community that was supporting one another. I read blogs from moms of children with Down syndrome, and I found forums where I was able to ask questions and share deep feelings. All these moms (and dads) welcomed me with open arms and became a life line as I journey through the unknown terrain of Down syndrome.

Our Down syndrome family is close. We support each other and we share our lives. It is amazing that you can develop such relationships without meeting face to face. yet, at some point, you want to meet the people that have been there for you just to give them a hug and say thank you! And also to see their children's faces in person and not just through photographs!

On labor Day, a few of us got together in St. Louis. No longer on-line friends, but now face to face friends. And I have to say, these women (and husbands) are phenomenal! I wish we could have had more than just a weekend together!
It is impossible to get a picture of all the kids happy and smiling! A few of the kids were not okay with the idea of pictures! This is from our first day together.
The picture of Ellie and Nichole watching a movie is just cute! At the hotel while we were getting ready for bed the girls were having some down time.
Below, is a pretty sweet play place at a large church. We got to use it and the kids loved it. I have to admit this play place had an awesome slide and I was a little sad I only got to go down one time. Nichole wanted nothing to do with this place!
Our biggest group get together was at a restaurant. I have "known" all these ladies since Nichole was a baby as their kids are all older than Nichole.
And here it is all of us moms at the restaurant. I think a few were missing. But what a fun group huh?
One night, we got to go hang out at Braska's house. Jack came over to play too. All three kids enjoyed signing time (I have to say it is pretty sweet to be around a group of people that all sign! Incredible!)

About little Jack...he wrapped me around his little finger. What a lovely little boy! He was being so sweet to me, hugging me and kissing me that it made Andy and I wish for a little boy just like him!


I wrote a post earlier today, so if you did not get to read it, make sure to read Special Needs: They are all so Different.

Food, Glourious Food!

It was hotter than hades this summer and I turned on oven on 3 times total- once a month to make a casserole for the soup kitchen. I made alot of skillet dishes this summer, used the crock pot and forced Adam to grill.

Our garden produced well and what grew grew in abudence! We had:

Cucumbers- by the bushel. We now have lots of pickles. The kids and I would eat 3-4 a day. They were so much more tasty than the ones in the store!
carrots- epic.failure.
tomatoes- one large bag turned into sauce, another large bag waiting to be made into sauce, several taking the place of canned ones in recipes.
peas- got a handful and then they died.
zuchinni- lots and lots of weirdly horn shaped zuchinni
pumpkins- 2 sitting in my kitchen waiting to be cooked and pureed into muffins. 2 more on the vine.

Since Adam has lost weight and wants to keep it off and I want to drop two more dress sizes, I have been trying to cook more (or rather, get back to cooking more) vegitarian based foods. I am trying to cut back on our animal fats in-take; mainly, meat and dairy. I'm still cooking meat, but just less per person per meal.

One new dish I tried was to marinate chicken in a dressing (I looove Kraft's sun dried tomato basil), dump the whole thing in a skillet, transfer to a serving dish, add chopped veggies to the skillet and maybe a liiiitttle more dressing. I cook them until they are crisp-tender and then add to the chicken.

We also loved cooked chicken with a wine-reduction, a creamy lemon sauce (canned cream of chicken soup with lemon added- I make my own) and steam asparagus or zuchinni. Simple and good.

Tonight, nothing is on the menu. Adam nixed my idea of a beef skillet because it is humid outside. I might just make a plain pasta dish; I'm currently too tired to cook!

Would Mary like this?

Joseph's CCD started this week. This is a big year for him. First Communion prep takes two years and this year begins it. HOLY SMOKES! I have a kid old enough and almost ready enough to... recieve Jesus into his body! And I have to help him learn how to be somewhat, sorta, worthy of this.

Who's idea is this anyway?!

I took him to CCD and then went up to the church to pray for my friend and her late husband. I had Cole, of course, and Camille. It was pouring rain and storming so we dashed from the school and into the church. It was dark in there, and cool, with only dim lighting from candles showing us where to go.

We walked in, blessed ourselves and sat down. Camille kept asking what I was doing so I said to her, "My friend's husband died and I want to pray for them."

"I can't hear you pray!"
"I am talking to Jesus in my head."

"Oh." Then, "Mommy, where's Jesus?"

"See the little light at the edge of the Tabernacle? That means Jesus is in the Tabernacle."

"Oh." Pause. "Where else is Jesus?"

"Where else could Jesus live?"

"In my heart!"

At some point, she had to go potty so we went to the bathroom and came back. The storm was RAGING and she was a little creeped out by the dark church and the thunder and lightening. Since she likes babies, I suggested we go sit and pray with Mary in the little grotto.

Of course, she was up and down over the kneelers, asking about the roses, the baby Jesus, etc. She asked why Jesus was looking at us and I said, "Well, He's a baby like Cole. Maybe He likes looking at people and being nosey!"

Eventually she got tired of me praying in my head, so we prayed out loud: the Hail Mary, the Our Father and our bedtime prayer. Then...

"I'm going to sing!" She proceeded to sing and DANCE- shaking her booty, doing some disco moves and the Camille version of "Squirrels in my Pants" from "Phineas and Ferb."

Yes, yes my daughter shook her bootay at the Blessed Virgin Mary.

And you know what? I think Mary would have liked it.

I read Simcha Fischer's blog "I need to sit down" (linked on the right) and I love her new post, "WWMD?" She says, in part:

... imagine Mary wiping her nose, or yawning, or having heartburn.  Imagine her giving birth.  Or heck, imagine her having to go to the bathroom, but not being able to get up yet because she didn’t want to wake up the baby, who was nursing and allllmost asleep. .  . and then He bit her!  He always does that just as He’s falling asleep.  Oh, and now He’s poopy again, and she still has to go to the bathroom.

...But she was a real woman.  If you think that Mary actually always wore blue, always had a look of fond melancholy on her face, and always held her arms at a 45-degree angle from her sides, then you are paying homage to a statue, and not to God’s real-life Mama....

Mary is a mama, just like you and me and other mothers (but with a heck of alot more holiness and, oh yeah, the Son of God to raise, not these mere mortals!). I bet she found the same joy in the things us mothers raising these pesky mortals do.

And aren't we supposed to dance with joy at the feet of God? Filled with the Holy Spirit? Or something like that?

Since I wouldn't let her climb onto the alter-area to see the Tabernacle up close (you can do that in CGS, girly-girl), dancing at the feet of the statue of the BVM was close enough.

I did laugh at her "Backpack Boogie" but in her joy at dancing for the Mother of God... dance girly-girl. I hope she will dance before Jesus.

Overheard: Girls

Joseph: Mom, a girl at school likes me.
Me: Really? Is she nice?
Joe: Yeah but TWO girls like me! And, Mom, there's only ONE of me!

MOPping it up

One of the first friends I met when we moved in last year belongs to a local MOPS group. This year, she invited me to join. I had heard mixed things about MOPS from the interwebz. Some said that they like to convert people who are not Christians, like Catholics. Because, you know, apparently that isn't JESUS on our Cross. I also heard that they like to keep the kids in the nursery, which would not have flown with me as a Mother of One (who did not like to be away from his Mommy, kthankxbye).

But my friend is super cool and has never tried to "convert" me and just laughed when Joseph told her son that you can and should pray to Mary. I am cool with my kids being the nursery as long as they bring them to me when they need me and, besides, TIME ALONE. YAY!

So I signed up and was put as my friend's table (huh. How did THAT happen? ;P). I LOVE it. We had a little breakfast before hand with COFFEE. The discussion table was awesome and the speaker was very neat. I liked alot of her ideas for solving discipline problems with children. The people in the 12 Months and Under room wrote that Cole nursed on the white board so they knew to bring him to me and not look for a bottle. I saw several other babies in the room with their mothers, so I know if I had to keep him with me, it would be fine.

Camille was in the 4 Year Old room and she had a blast with her friend... although she apparently can't tell me what she learned. Georgie was put in the two year old room, which really confused me. Apparently, it is because he will be two most of the year. In true Georgie fashion, he was NOT HAPPY about this and required alot of attention. We're going to try one more week and then maybe move him to the 12-24 month room. I explained that he is young, attached, a preemie and not very verbal... they got it but he still cried and clung alot.

I am so looking forward to this year. I really need an outlet to make more mom friends and have playgroups for the kids. When Joseph was a baby, I was in a MOMS Club and loved our playgroup. It was one of the happiest times and we all still keep in touch via Facebook. I hope I can have that kind of friendship here!

On a side note, we made a little craft, canvas bags. My friend is an awesome baker and made all of us cupcakes. When I got home, Adam laughed at my craft but was super excited about the cupcake. He then teased me about my craft AGAIN and about the sweater I bought him at Banana Republic. So I ate the cupcake... by MYSELF. HA!

Cole's 4 month WCC

Let's ignore the fact that he will be six m onths on the 7th, kay?

My little bear who could not nurse in the beginning is now 14 pounds, 12 ounces! He is in the 25th percentile for weight and 50th for height! He has some hair- alot for beingmy baby- and big blue eyes like the others. Except for the nose, he's the dark version of Georgie.

My doctor told me that he has referred several people to our LC and she is "very competent" and "is a wealth of knowledge" and has "better results than some other LCs we have worked with." I was so pleased to hear that. He is quietly supportive of breastfeeding. When we had to supplement with formula and had to turn to formula with Georgie, there was no judgement. However, he really wants breastfeeding to work. It's nice that way.

He has no delays and is trying to sit up, reach for things, roll. He has zero interest in solids and eats enough milk to make up for that. He sleeps a good chunk of the night and naps about three times a day, which is nice for me. I just went through all the clothes and the Bear needs nothing but has nothing of his own, lol. All of it is hand me downs.

Speaking of bears... someone is growling...

Special Needs: They are all so Different

I grew up knowing little about special needs. What I knew, was that I was not to stare and to stay away from "those people." Once, I even heard that when parents gave birth to a child with special needs, it meant they had done something wrong and God punished them with such a child. Nichole has never been a punishment to us. Her Down syndrome has been one of the greatest blessings our family has experienced. I wish I would have known that before she was born, maybe it would have helped me deal with her diagnosis a little bit better.

Two years ago I had the privilege to attend a conference called "Parents as Presenters." It was the first time I had been surrounded by parents of children with different special needs. I had come to the conference expecting to have so much in common with these parents (which we did) but what I learned that weekend was that each special need has its own challenges and blessings. My eyes were opened to the world of special needs beyond Down syndrome.

Once we adopted Nina, her Cerebral Palsy challenged us in ways we never had been challenge before with Nichole. Somehow, I feel like my understanding of special needs has expanded, and yet, I feel like I lack in so many areas.

There is little about Down syndrome that I do not know or have not heard about. Really, once Nichole was born, I began to study Down syndrome, I began to research. Our Down syndrome family is close! In facebook, the blog world, the forums. A wealth of information that I access daily.

Cerebral Palsy? This is a different story! I feel like I have just dipped my toes in the waters of CP. The more I learn the more I realize that I have a long ways to go. I think starting out with an almost 4 year old did not help me "grow up" with Cerebral palsy along with Nina. I am discovering more and more that what we think are behavioral issues are sometimes common to CP. I am learning about new treatments, surgeries, procedures that are hard to understand or to know what they are for.

But I am learning, as I go along.

Down syndrome and Cerebral Palsy are so different. We had it "figured out" with Nichole. Nina's CP challenges those areas we had tackled with Nichole. There is no one size fits all with special needs.

Our family is stretched and molded with our three special little girls. What a journey we are on!

Don't Accept, Expect: Paul Daugherty 2009 Keynote Address

I read this keynote address a couple of weeks ago and I loved it! Paul has a child with Down syndrome, and what he has to say is what many of us parents feel. This is what we want professionals to remember, this is what we want to share!

Paul Daugherty delivered the keynote address at the Remarkable Families Symposium on Friday, April 3, 2009 in the Cintas Center.

Make sure to click here so you can read his speech in full. These are only excerpts of his address, my "favorite" parts:

Keynote Address


My daughter Jillian is 19. She is a senior in high school, who will attend Northern Kentucky University in the fall. She has performed in the school play, she has managed the school volleyball team, she was on the junior varsity dance team that entertains at halftimes of basketball games. Believe it or not, she holds the school record in her weight class for the bench press, the dead lift and the squat. (Dad already had one son. Maybe he wanted another.) Last summer, she worked 12 hours a week in a daycare center, making almost $8 an hour. The kids loved her, and cried when she left to go back to high school.

And she has Down Syndrome. In some respects, that matters a great deal. In others, it matters not at all. It's about perception, mostly. It's about insisting on getting what you pay for, and not leaving the ticket counter or the insurance office -- or the high school conference room -- until you get it.

People look, but they don't see. People, and I'm talking qualified professionals, people trained in special education, too often don't look at Jillian and see possibility. They look at a child with Down Syndrome. They don't see who she can be. They conjure a stereotype. It's easier that way.

Jillian once had a special ed teacher who sat in an IEP meeting with us and said, quote, she can't learn. Jillian has had teachers, too many teachers, who could not be bothered to explore her possibility. It has been amazing, watching these teachers, who at some young age must have though teaching was an opportunity to change a kid's life. Presented with Exhibit A in my daughter, most of them have attempted the bare minimum. They have missed their calling. They're enriched only by a paycheck. My wife Kerry and I have spent 19 years trying to change their perceptions. We will never stop. We have been guided by one thought:

Expect. Don't accept.

We have not allowed our daughter's aspirations to be tethered to the the way people look at her, without seeing her. We let Jillian set her own bar. Wanna dance on a team? If you're good enough. Wanna get a summer job working with kids? If they'll hire you. Wanna set the school weightlifting record. Sure, great, absolutely. No steroids.

We never say never. Never is not a word. It's a self-defeating state of mind.

We have to change the way people think before we can change the way they act. Altering perceptions is like breaking a stone with drops of water. It can be done, if you're willing to take the time.

We have spent an equal amount of time educating the educators. Don't just look at our daughter. See her.

All any of it required, at base, was a disbelief in limitations. She can't learn? No, you're not willing to let her try. As parents, we cannot let that go unchallenged, not ever. We owe our kids that much. Expect, don't accept.

Do not give in to those who would ignore their better natures, because it's easier to retain a stereotype than change it. Change requires work, but it's the only way we improve as human beings. When people resist change, protest. Scream real loud. Give 'em hell. Don't let them tell you what your kid can do. Expect, don't accept.

Something that we as parents have learned is, every small achievement is worth celebrating: Tying shoes, answering the phone, writing thank-you notes, making the bed, fixing breakfast. After each of these little triumphs, I always ask myself: Who got the better part of this deal? Jillian? Or me?

As parents, we've spent lots of time hearing what our kids can't do, will never do. We heard it from the first day. She'll never be able to... complete the sentence. We never bought into that. You get what you expect. Not what you accept. It is the difference between settling and battling. The difference between daydreams and real ones. You get what you expect. Not what you accept.

Don't accept. Expect.

What else did we hear? These kids won't read. Jillian reads at about a 6th-grade level. She's in a book club. These kids aren't good socially. There are times I wish that were the case. In her elementary school, Jillian was known as The Mayor. In intermediate school, she was appointed an ambassador, a 6th-grader charged with showing the rookie 5th-graders around the building.

Education should be the business of instilling hope. Too often, it isn't. I don't like being a pioneer. I'm not curing polio. I'm just expecting teachers to do their jobs. I'm not accepting any less. There are teachers at Jillian's school now who frown at the mention of my name. And my wife's. We're a pain in the ass. Other parents have to change diapers. We have to change minds.

But what a payoff.

Here is what Jillian does. Here is the service she performs, by being her: She opens my eyes to the wonder of the ordinary. I've enjoyed the little wins with Jillian I took for granted with her brother: Using a fork, spelling, times tables, discerning the incredibly vital difference between homogeneous and heterogeneous mixtures. Actually, for several years, Jillian has had homework I can't do, making me wonder who's got the syndrome thing here.

I would never have seen any of this without Jillian's vision. I look forward to the next generation of milestones: Jillian home alone overnight, Jillian in her own apartment. Jillian, God help us, learning to drive.

As these kids grow, so do we. We spend less time asking why and more asking why not. Their limitations are obvious. What's less apparent is how many of those limitations disappear when we expect better and more, from them and ourselves. And when we accept nothing less. Their potential is limited only by our preconceptions.

It's called Down Syndrome because a guy named Down identified it. It's not down at all, not for the kids and the teachers and classmates who choose to embrace them. Certainly not for those of us who are privileged to know them and love them.

As parents of children with disabilities, we face unusual challenges. But also, unique opportunity. As we blaze the trails, bend the minds and tweak the perceptions, we reap the rewards of knowing we've made the world a better place. We're only as good as the way we treat each other.

Expect, don't accept.

Nina has Glasses

Yesterday Nina got her glasses. We have really talked about how great it will be when she has them, so she was very excited to finally get them.

We think they really make a difference as we heard her say, "I can see better!" We are not sure she is repeating something we told her would happen, or if she in fact realizes that they help.

Ellie on the other hand was very sad about Nina getting glasses. She is afraid that Nina will get picked on, or that she will not look as cute. We talked to her about how much glasses will help Nina, and that looks are not important, but only what is inside our hearts. In some very small way, this is the first time that Ellie realizes that one of her sisters is "different." It amazes me because Nina has braces and a walker and Ellie has never made any comments. But glasses?

However, this morning when the girl were going to school, Ellie was the one to remind us not to forget Nina's glasses. At school, as they began to color, Ellie pointed out that Nina was trying to color inside the lines. Ellie cheered for Nina and celebrated. "Look mommy, the glasses are really helping Nina color better!" So the heart brokenness was short lived.


Handwriting Help



Handwriting can be a challenge for some kids who have
Agenesis of the Corpus Callosum.

There are several concerns, for some kids who have ACC,
when it comes to handwriting. One of them is...holding
the pencil correctly while being able to make the writing
movements comfortably and easily.

Some kids who have ACC may have challenges with fine
motor skills.

My child, Matthew, who is completely missing his corpus
callosum, picked up pencils, crayons and markers by
wrapping all of his fingers around the pencil and making
a fist...also called a palmar grasp (which he still prefers).



We also tried 100,000 different kinds of pencil grips (ok not
that many but A LOT) with Matthew until his special
education teacher in about 5th grade discovered a
particular pencil grip that he used/tolerated fairly well.
Although he is still unable to write letters, he can make
circles and lines.

There are also additional struggles and challenges when it
comes to handwriting and some kids who have Agenesis of
the Corpus Callosum that I hope to address in another post.

But the whole reason why I am writing this post is because
I want to share a couple of handwriting strategies with you
that I have seen many parents, who have a child with ACC,
speak highly of and say how much they have helped their
child.

The first is an ergonomic pencil called Twist'N'Write
made by PenAgain. And the pencils are refillable.



Twist'N Write Pencils by PenAgain.

The Twist 'N Write pencil is made for small hands
(elementary school children) and cost only a couple
of dollars for a two-pack.

View a story about it being used in the classroom
on Fox news:



Read what an Occupational Therapist has to say about
the Twist'N Write pencils:


"Hello Pen Again. I am an occupational therapist at Lucile
Packard Childrens Hospital and I work with outpatients at
our therapy center at 2345 Yale Street in Palo Alto. I want
to thank you for sharing the new Twist n Write pencils with
our OT department, and to let you know that our supply of
pencils has diminished to only 2 because we have found it
to be so helpful for our patients. The pencil has been
particularly helpful to children with Down Syndrome, hand
or thumb weakness, and those with poor coordination who
cringe at the sight of a pencil, but is intrigued by your
pencil’s unusual shape. An 18 year old patient of mine who
has had brain tumor surgery with residual weakness and
hypertonia in his dominant right hand, is now able to
write again with that hand because I started him using
the Ergo Sof. Now, he is writing a journal entry every day,
and drawing cartoons."

J. Kitsuwa-Lowe, MA, OTR/L
Occupational Therapist

PenAgain also makes pens



as well as Twist'N Write pencils.



There are several styles to choose from.

Pencils and Pens can be purchased at local stores near you including Staples, Office Depot and a few other stores or
can also be purchased online.


The second handwriting strategy that parents speak highly
of who have a child with ACC is Handwriting Without Tears.



Handwriting Without Tears was created by a mom,
Jan Olsen
, who is also an Occupational Therapist.
Jan's mission to help her own child learn handwriting
began in 1977.

You can read more about the history and mission behind Handwriting Without Tears.

Handwriting Without Tears is a hands-on approach to
learning using multisensory methods to help teach
handwriting. Many kids who have Agenesis of the Corpus
Callosum respond very well to a multisensory approach
to learning and the ability to learn through a hands-on
style.

Check out a video of a child and his teacher using one of
the hands-on methods to help teach capital letters:



View more video demos of Handwriting Without Tears.

Your child's school may already have access to
Handwriting Without Tears. If your child is struggling with
handwriting check with your child's school to see if this
educational teaching tool to help promote handwriting can
be incorporated into your child's educational program. And
if your child has an Individualized Education Plan (IEP)
be sure to have it written directly into your child's IEP.




You may also want to check out the Back To School: ACC
documents
post for more educational information.

Going to School

It is hard to believe but the big girls have been in school for almost 3 weeks. Yes, I realize the fact makes this post a little outdated, but I promise this post has been waiting to be written because of its significance.

For starters. Ellie did not want a picture of her first day of school. Her only reason and complain was that "It is not my first day of school, I have been to school before." So I had to settle for a picture at school once the girls were settled in their class.

Ellie loves preschool and so far loves homeschooling as well.

Nina, unfortunately, did not get a special first day of school picture. I still might try to get one though. Sure it is only preschool, but that day signified so much more.
I dropped the girls off. I was very anxious about Nina and how she would handle school and the other kids. Fortunately she is in the same class as Ellie and they are in the same small group. It just happened that their group was assigned to the play-doh station. And wouldn't you know it, Nina loves play-doh!

Ellie and Nina's teachers are the teachers every parent wishes they had. I left preschool that day with the words from one of her teachers dancing in my heart, "I am not worried, I have great expectations for Nina, she has great potential."

As I walked back to the car, with the teacher's words still echoing, I allowed some tears to express the enormity of the moment. In the preschool room of a small town, a once-orphan girl was given the opportunity to learn. A fact, that would have never been possible had she stayed in Ukraine. Rather than a preschool room, she would be in the cold and stale room of an institution. This, because she has Cerebral Palsy, and therefore deemed as someone with no potential.

It might be "just" preschool, but for Nina, it was so much more. It was the promise of a future where the world will not close her up and leave her to die. But rather a world that says to her, just like her teacher did, "I have great expectations for you Nina, you have great potential."

And in her school she plays, she learns, she grows. She shows everyone that she indeed has great potential and our expectations grow and grow!

Life and death and everything in between

When we moved to Korea, I became friends with two sisters, one a year older than me and another a year younger. Although I hung out with one at a time, at different points during our station there, I considered both to be my friend. Our fathers kinda, sorta, worked together; certainly, they knew of each other and aprroved of our friendship.

Time passed and our lives in Korea ended at the same time. They went to their next PCS and we went to ours, Hawaii. It was the good ole days and we wrote letters and sometimes called each other.

(Children, back when I WAS YOUR AGE we had this thing called LONG DISTANCE. And we had to PAY for it! The mailman brought us HAND WRITTEN letters that took days or WEEKS to get to us, not minutes! And it was UP HILL, both ways in the sand dunes!)

Our corrispondence waxed and waned over the years. I married young and had babies before most of my friends from Korea. I was at a different point in my life but I still loved and cared for these sisters.

Two years ago, the youngest sister got married.

Today, her husband passed away.

***

I had another good friend in Korea, S. S and I looked alot alike. Like the two sisters, I kept in touch with her over the years. Of all my friends, hers was the only wedding I was able to attend.

She is in labor right now with her first baby.

***

It is staggering how, in one day, one moment, there are the greatest mysteries of life and death. Any minute now, my friend will hold her new son and simply watch him breathe on his own. Hours ago, my other friend watched her life partner breathe his last.

The beginning of life and the end.

They say when a woman is in labor, she is on the edge of death, tettering at the brink. They say you die a little to bring life into this world. Certainly, it is the death of your old self and the birth of the woman in a new role, a new life, as this little person's mother. A tiny person, dependent on them for everything.

That is how we leave this world. Not tiny, but dependent. It struck me, in the NICU, how some begin the world as others end- gasping for breath, needing assitence, dependent on oxygen and feeding tubes.

Life.

And death.

The great equalizers.

***

When I heard that my friend's water broke last night (ironically, about the same time I began working on her baby gift- I should mail that, huh?), I was estatic. My exact words on Facebook were, "Squuueeee!" And squee indeed! A new little baby to coo over with big fat cheeks to kiss and snuggle. Pure joy. I wish I could visit them.

When I learned that my other friend's husband passed away, my heart broke. At 30, we are not and should not be at the point in our lives where we bury our spouses. It's a terrifying thought. I'm a do-er and I want to do something... pure grief, agony and what I feel is only a fraction of what she feels.

Tomorrow, I am going to teach in the Atruim again. We will sit, and reliflect and pray.

And contemplate life... and death... and joy... and grief... and everything in between.

Its almost fall, ya'll

After those hideous 100+ degree days that left us unable to go swimming in the bath water of a neighborhood pool and left my Candian friends gloating, the weather has finally cooled off. With the windows open (a must-have for when your husband paints counters with something toxically-high-inducing) and the fans on, it is cool in the house. Cool enough for me to, you know, wear capris or shorts and not want to strip the second I walk in the door.

(WHAT?! I'm hormonal, post-partum and hot. So WHAT if my poor husband has hardly seen me properly dressed since March!)

As I walked back from school today, I thought back to last fall and how far we have come.

Last fall, I was juuuust pregnant with Cole and slightly terrified. This fall, Cole is a happy and healthy 5 month old.

Last fall, Georgie was talking, crawling, eating some solids, taking a bottle and sleeping through the night. This fall, he is walking, climbing, table dancing, talking less, addicted to a sippy of milk and not sleeping through the night. Our local Infant and Toddler Services are coming out in two weeks to evaluate him. I honestly hope he qualifies for something. While his receptive language is awesome, he's lost words. He used to say bra-bra, dis, dat, ba-ba and a few more. Now, all his words are sounds "ma" for milk, "ba" for bottle (cup), whoo-whoo (train, the only thing that might count as a real word), hu-hu (zhu-zhu,for his zhu-zhu pet).

I thought to myself today, "I wish he had been a December baby." And I really do. Even two more mesealy weeks would have done the kid wonders.

We are hurling towards his second birthday. In many, many respects, this second year has been ooddles easier than the first. We are past all the anniversaries. We made it through all the mildstones. It's not quite old hat but it is easier. I know what to expect. I know how to steel myself against the onslaught of emotions. I have better drugs.

With Septemeber comes planning for Halloween costumes, thinking about Christmas cards and the NICU Thanksgiving. Two  years ago, my only thought was if I would be in the hospital at Christmas, how early to send out holiday cards. My baby was on my radar. The NICU was not.

It's almost fall, the end of the season, the end of the year, the slow dying before the darkness of winter.

This year, joy, not sorrow, is on my radar. Moving forward, glancing back only to see how to merge to the next lane, so as to keep moving forward. The rhythem of the year, the seasons of life, coping with the sorrow that sometimes mingles with joy.

It's almost fall, ya'll.

But that doesn't mean winter is coming.

Eight Months Home

It is hard to believe that eight months have gone by. At the same time, we forget that Nina has not always been with us.

Nina's English continues to improve. While we know that she does not understand everything yet, it is easy to forget because she speaks very well. Maybe not like a typical four year old, but you would never guess she was adopted if you met her today.

Nina has started pre school, and that will be a post all on its own. She is in the same class as Ellie and she is loving it! She has the best teachers anyone could ask for and we are so excited for her!

Her outbursts and behaviors have improved thanks to being able to communicate. However, we are not sure if she is lying quite a bit, or if she is still learning English and she gets confused.

We finally took Nina to the eye doctor and as we suspected, she needs glasses. We should get her glasses soon and we will have some cute pictures to post. I really struggled getting "blue" glasses like she wanted to (from the colors we could choose) but I figured she has to wear them and we want glasses that she thinks are cute. Yes, I would have ordered plain brown, so maybe blue will be a good idea after all :)

For big news, now that we have the potty stool and she is comfortable using it, she can go potty all by herself! We have celebrated this milestone as it has given her so much confidence that she seems willing to try just about anything that "big girls do." She thought she might even be able to walk, but it ended up being a little hard. Regardless, I am thankful for adaptive equipment that allows a four year old with Cerebral palsy to be independent while going potty.

Nina uses her walker at school, and she does wear her braces most of the day. So that is a good thing! If only we could convince her that she can walk! (Because really, when she hold our hand, she is walking all on her own, she just does not know it yet!)

new kitchen!


Newly stained cabniets and the primer for our new black granite counters!



Adam did the marble/granite texture this afternoon. The kitchen is still a wreck but hopefully it will be normal soon! It looks AWESOME.

First Day and belt test



Rock on, big dude.

Silly Georgie Pudding Pie

Riding the "whoo-whoo" (train!)
This sheep walked right up to Georgie and followed us around the pen. He didn't pester him for food... just wanted to be petted!



Georgie is turning into quite the ham! He likes "whoo-whoo's" trains and was really happy when we turned on Thomas on TV! Round three of the Tommy-Hatt obession...

He also went pee pee in the potty twice! Today Adam caught him pulling down his diaper and I didn't take him to the potty... my fault, the kid peed on the floor and then went again in the potty!

He actually told a joke the other day. I was reading Joseph a baseball book and he came over, pointed to it and said, "Whoo-whoo."

"That's not a train book!"

He grinned and laughed before pointing to it and saying, "Whoo-whoo!"

American Girl comes to KC!

To our local mall, to be exact!

When we first heard about an AG store coming to Kansas City, I was STOKED. Camille was too, once I told her. Yes, the Appleton outlet is close to Grandma Jo and, yes, I enjoy the once a year experience. But a full on store? With the clothes AND dolls AND a t-shirt making place AND a hair salon???? The eight year old who remembers opening Samantha as a late Christmas present from my aunt was excited.

And, yes, so was Camille. :)

The store opened at 9 am and Camille, Cole, Baby Josie (her Bitty Baby) and Baby Josie the second (a Bitty Twin) and her double stroller arrived at 8:30. With the exception of Cole, none of us had eaten breakfast... and there was a line.

I saw a small tent and thought that it was for prizes and events but that was the first 100 people in line. We joined a third line and learned that we had to get "group tickets" to the event. When our group number was called, we would line up and be able to enter the store.


We saw alot of AG dolls peeking out of backpacks, purses and the newer doll carry bags. I was surprised at the number of teenagers who showed up with a Kirsten or Samantha held proudly in their arms. When I was a teen, back in the dark ages, it was okay to admit that you had an AG doll but they were usually packed away or given to a younger sibling. I was the only person I knew who still had them out... I'm glad to see that this has changed! (And, no, they weren't dorky looking, immature teens- they were wearing the typical stuff teenage girls around here wear but had a doll in their arms. So sweet!)

We were in group 5 and once we had our tickets safely tucked away, we hit Panera for bagels, smoothies and coffee. The mall was still  mostly closed but a few stores, like the Disney store and Bath and Body Works, were open. I guess all the excitment opened my purse strings a bit, because I bought some items I normally never buy, like air fresheners for the bathrooms. (Our house still occasionally has a  musty smell and certain children who REFUSE TO FLUSH TOLIETS don't help!) While there, we met a girl and her mom who were number 13 in line. If you were one of the first 100 people, you got two free AG books, a shirt for your doll and a magazine. The first two girls recieved free dolls! They had camped out the whole night, sleeping in the mall. I know it sounds silly but if Camille were older, I would have done it. Totally. I mean, people camp out days in advance for movie tickets, books (Harry anyone??) or game tickets- why not something as wholesome and FUN as American Girl dolls?

 After that, we ran into another family with a baby who had a Sophie the Giraffe and told us you could buy one at Nordie's- so off to Nordie's we went!



This is definatly a "keep away from Higgins" toy!

After that, we checked back at the mall guide, which had a scrolling light on the top that would give you the group number lining up. It was at 3, so we went to Baby Gap and happily discovered that their playwear was on sale for 7 a piece. Since Georgie likely needs new pants, I picked up some for the winter- score!

We were in Gap for 30 minutes and when we got out, the screen had just changed to group 5! We got free coupons to CFA and lined up, me nursing Cole the whole time. The sercurity guards were really helpful and got my tickets out for me. When we were standing in line, a little girl talked to Camille about her dolls and showed Cami her (the girl's) Lanie. That handed alot throughout the day. Mothers and girls would stop to ask Cami about her dolls or tell her how cute she looked with her stroller. It was so nice to easily chat with people about these toys- truley something to be treasured.

In line, you could play word puzzles or color or write a thank you note on the wall, so we did:



"Cami" is written in the center of the photo

And then... we were IN!


It was... awe inspiring to walk into the store. I am so old school. I remember when it was just Kirsten, Samantha and Molly with only three stories and you could buy only the books in the stores, not the dolls or clothes. I remember the burganday boxes with real ribbons and how NOTHING was plastic. NOTHING. And, yes, the company has changed. Totally changed and, no, I don't think it is all for the better. But to have THIS. A store FULL of all the things I dreamed about when I was eight. All the items I drooled over whenever the catelog would come in the mail... and to share it with my daughter?

PRICELESS!

We went straight for the craft table, which she made while I entered to win a doll.



I had a mother come over to me and tell me my daughter was very polite and adorable when she asked for a flower for her craft! :)

Then we hit the Bitty Baby (Baby Josie) section:


At first, she pulled a "Wings and Things" box off the shelf. No, I wasn't planning on buying her anything and found myself saying, "We just bought Josie a Halloween outfit. Let's look around."

We made our way through the crowd and went back into the historical/ Girl of Today section. The crowds were busy but everyone was polite and helped us around.

Camille picked out a little doll "purse" like she saw the older girls carrying and... well, I knew Adam would KILL me. I knew the dolls were super expensive without a birthday or Christmas. But the GRAND OPENING! Of the LOCAL STORE! With my DAUGHTER!

Yes, I whispered to her, "If you like, I will buy you a doll." Her eyes LIT up and we went to the look- alike section. She spotted one and said, "HER!"

I said, "Are you SURE?"

"Yes!"

I made her look around, but she kept coming back the doll with long blond hair, blue eyes and bangs. Finally, I got down to her level and said, "This is a BIG TREAT. This will be your last treat for a LONG TIME. You need to be very careful with this doll and treat her nicely." She nodded.

The salesclerk went to the back, got her the doll and we checked out.



She was pretty beat but still managed to charm the sercurity guard, who let us out the front, instead of going through the crowded store. She got her photo taken by someone offical looking but I'm not sure who!

She crashed on the way home but enjoyed watching Cinderella with "Smarties." You know, like the candy. Yes. she named her doll after a CANDY.



Ah, the addiction continues! Mom and I need to get sewing, as this doll has no clothes. I mean, she might fit into Josie's clothes but... yeah, a girl's gotta have her own stuff, you know!

(Oooohhh, this means I can buy Camille those pretty holiday dresses that come with a matching dress for her 18 inch doll! SCORE!)