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.
I will try to post every day, and I really do need some ideas! So join me in celebrating people with Down syndrome!
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:
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.
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.
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.
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!)
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.
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!
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!
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.
Me: Really? Is she nice?
Joe: Yeah but TWO girls like me! And, Mom, there's only ONE of me!
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!
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...
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.
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
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
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
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
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.
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!
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.
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.
(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.
|Riding the "whoo-whoo" (train!)|
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.
|"Cami" is written in the center of the photo|
And then... we were IN!
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: