Mommaday: Dear new Momma…

The Quail

Dear New Momma,

 When I heard of your worry over the diagnosis your upcoming baby has received; that they may have Down syndrome and that you are scared,  I had a lot of things to say about the history of people with disabilities and the injustices they have endured throughout time. This morning when I woke up thinking about you again and your worries, I realized this was not the time to try to educate you on the world of disability. I say this as a person who has known and loved people with disabilities my entire life, family members, people in school, people in my jobs and fortunately now my sweet girl. The time will come when you are seeking that history on behalf of the child you know and love in order to be a strong advocate for him. But for now- now is not the time for you to gear up for that. You will know when that time comes. You have already advocated for your baby in the best way you can- by choosing to have him. It is a brave choice. You are having a sweet baby- a baby you will be a better person for having and knowing. Stand with us and let us guide you. Get to know us and the real stories of the real children who have Down syndrome that we raise every day of our lives- do not let others you don’t know fill your head with stereotypes that are born out of their sorrow, their guilt or their ignorance. Those of us in this forum, we have made the choice that you are making. Whether we had a pre-natal diagnosis or not- we’ve chosen to mother our children. No one can tell you what your child will be capable of- but I promise you- your child will know you, will love you, will want to please you, will achieve milestones. He will bring you great joy and you will be continually amazed by the tiniest and grandest things he does. You will get more out of your child by ten-fold then what you put in to him. Maybe a year from now, you will want to know the history, the culture, the great people and forces that have brought the world of disability into a strong place in our world- a place where we have the right to expect equal rights for every human being- regardless of ability. We will be here to help you with that when the time comes. The people who will stand with you and your child- they are strong and good and kind and intelligent and ready when you need them.

For now, you have a sweet baby in you who already loves you enough to make his way here. Turn your back on those naysayers. They are going to do nothing but needlessly upset you- and I promise you their information is not born out of fact and reality- it is born out of fear and a need to justify choices they made—it has nothing to do with you and your baby. They do not know what your child will be capable of. Any child presents struggles, challenges and more blessings then you deserve.

ANY. CHILD.

EVERY CHILD deserves someone who believes in them, and for your baby- that’s you Momma. It’s your calling- embrace it. Soon you’ll embrace him. The Down syndrome will not be his biggest struggle, other people’s ignorance will be.

Love,

another momma

PS: This letter was written for a very specific someone who was struggling with other’s scare-tactics around her decision to continue her pregnancy after having received a diagnosis that her baby has Down syndrome. If you find yourself in that same situation- know that this letter is for you as well. You can also go here and here for more support, love and information. We’re here for you too. 

Today is World Down syndrome Awareness Day. 3/21; as in 3 copies of that 21st Chromosome. Today is a day we celebrate our beloveds and shout about it from rooftops. If you or someone you love has Down syndrome- well; you are just blessed. Blessed like our sweet family.

gratitude journal

1. not being the pagent mom

2. not having the pagent kid

3. green day

4. finding a green snack- pear applesauce!

5. making it through pictures with everyone still smiling and no ripped tights

6. dinner in the mountains

7. dinner at a friends

8. the happy baker asking how my morning is going as Lovey is ushering the loudest of the 2 children outside

9.a birthday party invitation

10. finding the canvas I wanted for the girls room

11. Keeping calm and carrying on

12. houses to see

13. garlic-basil-3 cheese bread

14. motrin

15. a fairly quick run of a fever

16. a happy baby despite the fever

17. playdates

18. cherry- white chocolate scones

19. an evening on the porch with moonlight and Lovey

20. panda bear children tumbling around with each other

21. spring flowers blooming

Fave-O-Lit Friday

 

Oh! The Places You’ll Go!
by the incomparable Dr. Seuss

Congratulations!
Today is your day.
You’re off to Great Places!
You’re off and away!

You have brains in your head.
You have feet in your shoes.
You can steer yourself any direction you choose.
You’re on your own. And you know what you know. And YOU are the guy who’ll decide where to go.

You’ll look up and down streets. Look’em over with care. About some you will say, “I don’t choose to go there.” With your head full of brains and your shoes full of feet, you’re too smart to go down a not-so-good street.

And you may not find any you’ll want to go down. In that case, of course, you’ll head straight out of town. It’s opener there in the wide open air.

Out there things can happen and frequently do to people as brainy and footsy as you.

And when things start to happen, don’t worry. Don’t stew. Just go right along. You’ll start happening too.

Oh! The Places You’ll Go!

You’ll be on your way up!
You’ll be seeing great sights!
You’ll join the high fliers who soar to high heights.

You won’t lag behind, because you’ll have the speed. You’ll pass the whole gang and you’ll soon take the lead. Wherever you fly, you’ll be best of the best. Wherever you go, you will top all the rest.

Except when you don’t.
Because, sometimes, you won’t.

I’m sorry to say so but, sadly, it’s true that Bang-ups and Hang-ups can happen to you.

You can get all hung up in a prickle-ly perch. And your gang will fly on. You’ll be left in a Lurch.

You’ll come down from the Lurch with an unpleasant bump. And the chances are, then, that you’ll be in a Slump.

And when you’re in a Slump, you’re not in for much fun. Un-slumping yourself is not easily done.

You will come to a place where the streets are not marked. Some windows are lighted. But mostly they’re darked. A place you could sprain both your elbow and chin! Do you dare to stay out? Do you dare to go in? How much can you lose? How much can you win?

And if you go in, should you turn left or right…or right-and-three-quarters? Or, maybe, not quite? Or go around back and sneak in from behind? Simple it’s not, I’m afraid you will find, for a mind-maker-upper to make up his mind.

You can get so confused that you’ll start in to race down long wiggled roads at a break-necking pace and grind on for miles across weirdish wild space, headed, I fear, toward a most useless place.

The Waiting Place…for people just waiting.

Waiting for a train to go or a bus to come, or a plane to go or the mail to come, or the rain to go or the phone to ring, or the snow to snow or waiting around for a Yes or No or waiting for their hair to grow. Everyone is just waiting.

Waiting for the fish to bite or waiting for wind to fly a kite or waiting around for Friday night or waiting, perhaps, for their Uncle Jake or a pot to boil, or a Better Break or a string of pearls, or a pair of pants or a wig with curls, or Another Chance. Everyone is just waiting.

No! That’s not for you!
Somehow you’ll escape all that waiting and staying. You’ll find the bright places where Boom Bands are playing. With banner flip-flapping, once more you’ll ride high! Ready for anything under the sky. Ready because you’re that kind of a guy!

Oh, the places you’ll go! There is fun to be done! There are points to be scored. There are games to be won. And the magical things you can do with that ball will make you the winning-est winner of all. Fame! You’ll be famous as famous can be, with the whole wide world watching you win on TV.

Except when they don’t. Because, sometimes, they won’t.

I’m afraid that some times you’ll play lonely games too. Games you can’t win ‘cause you’ll play against you.

All Alone!
Whether you like it or not, Alone will be something you’ll be quite a lot.

And when you’re alone, there’s a very good chance you’ll meet things that scare you right out of your pants. There are some, down the road between hither and yon, that can scare you so much you won’t want to go on.

But on you will go though the weather be foul. On you will go though your enemies prowl. On you will go though the Hakken-Kraks howl. Onward up many a frightening creek, though your arms may get sore and your sneakers may leak. On and on you will hike. And I know you’ll hike far and face up to your problems whatever they are.

You’ll get mixed up, of course, as you already know. You’ll get mixed up with many strange birds as you go. So be sure when you step. Step with care and great tact and remember that Life’s a Great Balancing Act. Just never forget to be dexterous and deft. And never mix up your right foot with your left.

And will you succeed?
Yes! You will, indeed!
(98 and ¾ percent guaranteed.)

Kid, you’ll move mountains!
So…be your name Buxbaum or Bixby or Bray or Mordecai Ale Van Allen O’Shea, you’re off to Great Places!
Today is your day!
Your mountain is waiting.
So…get on your way!

Zuzuday: Leaps & Bounds

Oh the things she can do! Oh the places she will go!

41 + inches of pure determination! Lately we’ve had the good fortune to try out gymnastics through our buddies’ love of the sport. I’ve thought that it would be a good match for our energetic lass and I’m thinking we will take it up regularly soon. A local place offers a Saturday morning “fun gym” where you can drop your child off for an hour of lesson and an hour of free play. Last week when we got in the door she tucked snack monies and shoes in a cubby and darted into the circle of runners warming up faster then I could find my good-bye hug! The girls is pure muscle these days.

Including that ever important one in her noggin. On Sunday she came into where I was changing her sister’s diaper sporting a piece of paper with the word HAT on it. “Look Momma, I can write hat!” Indeed! She then proceeded on to write CAT, her name, her middle name and her sister’s name! I was stunned and sent her with her work in to share with her Dad and chuckled when I heard him ask if Momma had helped her with that.

Everytime we have tried to encourage practicing writing we have been met with a polite, or not-so-polite response of No. She’ll color what she wants, when she wants and how she wants and frequently informs me that I should let a little girl color how she wants. The mystery was solved later this week though when I asked her school director if they practice writing in her 3 year old class. She said some, but Zuzu, being the oldest in her class has been visiting the next class up and they do spend quite a bit of time writing in there. I had seen her stick-figure renditions of Dora when I gathered her from school- but had no idea she had learned to write her letters. I’m so proud!

Last night was our photo session for her spring dance recital. Since the Quail was recently under the weather we decided we would get her to bed early and I would just take Zuzu to the session. The year before when we did this ; I did not have my pagent-mom bravado with me and let us wait to be called for individual pictures as I watched Zuzu melt down long after she would have typically been asleep. This year I was armed with a plan to get her to the front of the line and get the individual shot done promptly so that I could lay off of the nagging of her to not rip her tights, not get the silver from her shoes everywhere, not knock the bow out of her hair again and not to tear her dress.  I felt like the ogre mom with my broken record routine, meanwhile her buddies are skipping around and she’s looking longingly. I’ll give her this- when the other kiddos were skipping and I had told her to stay still she told them not to wreck there clothes and then asked me if she could skip with them before just taking off- which is what she would have done and did do last year- so she’s growing- it’s sinking in. She got her photo done sweetly- well- maybe more determinably. When the teachers asked me which pose I wanted I referred them back to Zuzu’s request for an arabesque. Which was met with a, “I’m not sure she can” ponder from the teacher quickly cut off by, a “Sure I can!” leading into pure grace and smiles. Way to go Zuzu!

corner view: daily communication

MORE

SORRY

APPLE

 

DA-DA

EAT

BABY

ALL DONE
I had high hopes for this post and have been looking forward to it since the topic announcement last week. I treated myself to a video and space upgrade on the ole blog and set out to make a movie of all of the signs we do in our house! Sadly, our industry queen fell sick to a high fever this weekend and she was unable to perform for a good part of it. The footage we captured we were going to label as Bieber Fever since it included her signing rendition of the hit single Baby, Baby, Baby complete with a gel Be Kool patch attached to her tiny forward to keep her fever minimized and her charisma high. But, well lets just say between technology and viral bugs the film isn’t quite prepared. So we’re going with the B-side and showing a few photos.
 
We started signing with Zuzu our 4-year-old when she was about 9-10 months old. With this experience under our belts and a clear research study of her showing that it OBVIOUSLY did not inhibit her ability to talk (come visit us anytime of the day), we had no qualms joining our buddies in the Down syndrome community as Rachel groupies around her show Signing Time. From early on both of our girls have been able to make fairly clear choices about what they wanted. I say fairly, because the Quail is just now starting to be able to sign with out prompts and doesn’t have a full enough vocabulary yet to cover all of her bases. She gets quite animated when she needs something and doesn’t have the sign to tell us yet. I have no doubt that the Quail will talk with as much animation as her older sister one day, but in the meantime we know it’s important to give her a means to communicate that will minimize her frustration of getting what’s in her pretty lil noggin out to the rest of the world. We’ve done daily therapy to overcome her motor planning and oral-motor weakness that comes along with Down syndrome and we KNOW she has things to say- we’re happy to adjust how we listen to meet her half-way. Both the girls will sign with each other now and for Zuzu, it’s become so instinctive that her hands will automatically go to the position still now as she’s saying the words for some of the earliest ones she learned.
 
Learning sign was easy and fun- there are tons of websites, board books, flash cards and videos. Instead of watching other TV our kids look forward to watching the antics of Rachel’s littles doing the things they do everyday. Zuzu’s first sign was more. When we started with the Quail on more she struggled and it seemed to abstract of a concept to begin with. She needed a one-handed sign that correlated with a concrete subject- so we backed up and went with her favorite motivator- eat! We started hand-over-hand having her sign eat and we did it as well and then handed her what we were eating. Now she’s to the point where she does it when she’s hungry on her own. Below is a list we’re keeping of her signs. I know I’ve forgotten a few- but this starts us off:
By herself:
apple
banana
cereal
cracker
sorry
please
more
drink
eat
book
bye-bye
up
all done
dog
dada
night-night
phone
hi
baby
dance
 
will do back when I sign it
thank you
fish
cat
momma
my turn/me
car
sock
shoe
shirt
pant
diaper
bib
woosh-woosh (her breathing treatment)
milk
chicken (to eat)
 ball
motorcycle
where
what
 

 Edited to add: Here’s a link to her signing and a lil of her Bieber cover

Corner view is a weekly Wednesday post hosted originally hosted by Jane, currently by  Francesca. A topic is given and you can see impressions; be it in photographic or poetic in form from around the world:

 Jane, Dana, Bonny, Joyce, Ian, Francesca, Theresa, Cate, Kasia, Otli, Trinsch, Isabelle, Janis, Kari, jgy, Lise, Dorte, McGillicutty, Sunnymama, Ibb, Kelleyn, Ninja, Sky, RosaMaria, Juniper, Valerie, Sammi, Cole, Don, WanderChow, FlowTops, Tania, Tzivia, Kristin, Laura, Guusje, Susanna, Juana, Elsa, Nadine

gratitude journal

1. safe travels with work

2. a night away

3. returning home

4. a fun training

5. options

6. House of Pizza’s Greek Chicken over pasta!

7. a sunny day

8. house hunting

9. consignment sale dresses

10. a 4 year old proclaiming she loves ALL of her dresses- no matter how many times you ask her which one is better!

11. a 4 year old suddenly knowing how to write her letters?!?!?!!??!?!

12. a 4 year old suddenly going from spelling HAT to CAT to Abelia

13. a 4 year old not asking why, but rather: What would happen if I…. a thousand times a day

14. on call peds

15. motrin and tylenol

16. a quickly moving fever

17. a fever only lasting 24 hours

18. growth in the 2 year old- she’s now 30.5 inches and 26.6 lbs

19. a list of 30 baby signs

20. smiles amidst tears

21. my family