#12 Village people

Lately i have not been feeling my best. I am a full force, full energy kind of gal, and I'm suddenly forced to sit a lot, and kind of just endure. I would not say i am suffering right now, just dealing with some pain, and truthfully it sucks. Simple things in life like picking up, cooking, and laundry have become a bit of a problem, and thankfully the housekeeper came today to dig us out of the mess that has piled up. I have many doctors, which isn't always a good thing, performing many tests to see what in the heck is wrong with me. Fortunately all the non-invasive tests have come back negative and now the invasive tests are next in line. I will be scheduled shortly fore a spinal tap but they cant do it until they have done extensive blood work... blah blah blah and blah blah blah, im so over this and ready to resume life again. So why am i bringing all of you down with me, because you are my village. Every email, every comment,every facebook note, warms my heart and my aching bones. I have found new friends through this blog and kept up with the old. I love you village people.


With this said hanging out with my family is one of my favorite things to do. They are my lifeblood and doing things like going on an impromptu nature walk 10 minutes before dinner, for some reason, helps me manage right now.


Lately we have done a lot of things like this, late afternoon bike riding, early morning sunrises, and rainy day puddle jumping.


I know i will get through this and these days will be a distant memory in my diary of life. I have emunah ( faith) in Hashem and trust his ways. Hashem only knows good and this too is good. Tracht Gut Vet Zein Gut my village because it is all good!

#11 Cupcakes and aprons

My Dovie goes to an amazing Cheder (school)it is full of warmth and happiness. This is the kind of school that that makes you think of cupcakes and moms wearing ruffled vintage aprons, he loves this place, and so does my Rozie.

This is where i will send Rozie when she turns three and the school is willing to accept her in a true inclusion environment with open arms. The only problem is Rozie wants to go now, not when she is three. Every morning i let her play in the 3yr old class while i drop off Dovie. She loves, loves, loves, Cheder, and the kids love her. One time i saw a little girl on Shabbos and she said to her mom "that's Rozie she is in my class", is that not the cutest. The kids truly accept her now because she is a baby and babies are just the cutest yummiest things,Down syndrome or not.

But what will happen when Rozie is a peer ,when differences are more noticeable, when having Down syndrome becomes something the kids might ask about. I offer my version of what i think you can say to your kids about Rozie or anyone else that might appear to be a little different...
* disclaimer: this is what our family would like, and it is not necessarily what other families would want*
1. Explain to your child about Down syndrome, explain that Hashem has made each person in the world perfect, because Hashem does not make mistakes, and different is not bad. Just like hair color , eye color, skin color, etc.
2. When your child ask specific questions do not shush them for example "why does Rozie's tongue stick out like that?" A great answer is : it is very hard to keep a tongue inside your mouth and Rozie is working very hard to learn how to do that. Its ok to ask, it helps teach respect
3. Never ever use the word retard, retardation, mental retardation, these word hurt and are outdated and no longer appropriate even in a medical situation. In kids words we say Rozie just learns differently, in adult language we now use words like Cognitive difference, and Learning difference. I know this might sound uber PC but truth be told the idea of inclusion, and acceptance, is still a new concept in this world, just 10 years ago children like my precious Rozie were still being institutionalized. We are still trying to figure out the lingo and this is all so new.
To cap this off having Ahavas Yisroel ( loving someone like you love yourself) is the true answer here. When you show by example true Ahavas Yisroel than your children will follow. Acceptance and love are not always easy , but if you open your heart im sure it is there.

#10 Sushi and Pumkins

I was trying to come up with a meaningful post, but i am drawing a blank. I wanted to inspire through words and pictures, but instead Ive got nothing. Sorry guys.

We went to a Pumpkin Patch on Sunday and had a blast and didn't have a blast. The kids were so excited, and then the kids were tired and cranky.

Isn't that just the way it is. We picked pumpkins and we schlepped pumpkins and kids in our arms, and dropped a few on the way, pumpkins not kids, that is.


We went out for Sushi after wards, because nothing finishes off a fall harvest like sushi, and the kids were actually in great spirits through the meal. I also got a little creative this week and made some new headbands for some shows coming up



Isn't amazing how life in between chromosomes and syndromes and symptoms and tears and happiness and love and families and joy and sadness and and and and, that life can be so deliciously normal. Yum!

#9 Frantic Friday

Becasue Fridays are the most frantic day of the week and Shabbos is just hours away. I give you my version of Wordless Wednesday...Frantic Fridays...enjoy the pics.

#8 Sun, you are my sunshine

Today was a better day my spirits are up, i'm telling you Tracht Gut Vet Zein Gut. A lot of you responded about wanting to purchase a bracelet, i cant wait till they arrive. I also got some good news from the doctor. One of my tests came back negative, I'm not out of the woods, but I'm telling you Tracht Gut Vet Zein Gut. Today the sun also made an appearance.

I need the sun, I'm from Arizona and my heart and soul will always be that of a desert girl. I need warmth, i need sun.

I need to walk barefoot on cool wood floors on a hot day. I need the sun. I will never get used to East coast winters and my husband jokingly says i have seasonal depression, but all jokes aside, winter depresses me. I'm a girl of the sun, did i make my point yet.

Well today we had sun in the later afternoon and i grabbed the kids in a flurry and said in these exact words "hurry, snack, outside now!!!!!!" and i meant it , because there was sun. Ahhhhhh just what this desert girl needed.

#7 Strong enough for me

I met a good friend in the market yesterday( i think even though we really only know each other through the web i still like the word "good friend" life is to short for friend labels, so if i like you you like me,your my good friend and you all have to just deal {smiley icon inserted here})Anyways we talked about the idea of being a strong person, yes we had such a conversation right next to the string and processed cheese.
Its funny how life interrupts you. I have never thought of myself as a pillar of strength, as a rock ,as an inspiration, its just not me. When i look at my younger days, i often feel lucky to have survived those days, and trust me i did not do it with dignity or grace.I did it by dragging myself daily through the mud and often came out on the other side shamed and embarrassed. Those were the days.
When my first child was born i realized it was time to make some big changes, and i did. I had a major life alteration, and i can proudly say that i now try to survive most situations with some pride and grace, but trust me my ugly side creeps up way to much and im constantly fighting that battle within me.

My Rozie was a battle that i didn't have to fight so hard. It went a little like this... The doctor told me of her diagnosis , I cried and then i said,she is my baby and i love her more than anything.
This to me isn't exceptional strength its just pure primal mothers love. Trust me many of you would surprise yourself if you were in the same situation. Your instincts take over and you love your baby, period.
I am now working on finding a new strength with my recent medical woes. This has been a challenge, many of you have applauded my strength in this matter but trust me there has been a lot of...
1. Shower crying , this is my place to cry
2. Night time insomnia, with and without tears, worrying and dwelling on what ifs
3. Fears ,debilitating fear
4. Barganing, deal making, and begging of Hashem
I'm not telling you this to make you feel bad for me , trust me i hate pity, just for you to know I'm only human, and many time i wonder... Am i strong enough for me??
If you were to ask me if i am strong enough for my Rozie, for my Dovie, for my Mel, my answer would be YES!!! I am strong enough for them i would move mountains for them shake the earth until the insides fall out, i would do anything, anything, for my kids,

but for me... I don't know.
This to me is so disturbing and i can not settle on this, i can not be ok with knowing that i may not be strong enough for me. I am a fighter by nature, and activist by heart, a doer by habit, how can i not be strong enough for me.
I decided to go with what i know. The great Lubavitcher Rebbe taught us the concept in Yiddish of "Tracht Gut Vet Zein Gut" If you think good it will be good. To me this is so powerful, this simple statement makes up who i am and who i want to be. In recent years a little girl was sick in the Lubavitch community and her family started a campaign with those silicone bracelets and they simply said Tracht Gut Vet Zein Gut on them encouraging the whole community to think positive about their daughter.I would like to reinstate this campaign. I have ordered a 100 bracelets with the simple saying Tracht Gut Vet Zein Gut. I am doing this to instill this idea in my stubborn head and everyone else. When i receive the bracelets i will put them up in my store and 100% of the proceeds will go to my favorite Tracht Gut Vet Zein Gut organization The Friendship Circle
. Get ready when those bracelets come in i will be bombarding all of you to spread the word. Tracht Gut Vet Zein Gut

#6 From the moon and back

When my Rozie was born, i did not struggle with her diagnosis as much as others struggle in those first days. One of the things that kept me grounded was the Jewish concept about neshamas (souls) like my Rozie. She is considered in many Jewish texts including the Tanya ( where i found my solstice) to be a very special neshama without flaws, and because this neshama is so holy and pure a typical body can not handle such a being ( im sure i butchered that, but you get the idea). I found joy in this concept and felt no sadness or remorse for this special neshama. But time has passed and the idea of raising someone so lofty can be a bit tiresome on my neshama, its a big weight to bare.

I know a family in my community here with a beautiful teenage daughter who also has Down syndrome. She is the dream child we all hope our designer babies grow up to be like. She goes to typical high school with tons of friends, she dresses so cute and trendy (by her own accord), she is social with phenomenal speech, as clear as day. I ask her mother often for secrets and tricks, and one thought stuck with me, she told me to treat your daughter just like the rest of your kids. She told me in so many words.....i know she is "holy" and all that, and it is a strong belief in our religion, but i think my daughter's success has a lot more to do with being treated just like i treat the rest of my kids.

With that i took on a new attitude. I also try to give Rozie equal treatment as i do my others peanuts, same expectation, same hopes, same wishes.
Sometimes though its impossible to escape this "special neshama".......

Recently some medical issues have been lurking my way and me the under-worrier i am like to ignore things, but my doctors do not and have concerned themselves that my pretty asymptomatic Leukemia might be the cause of my strange symptoms. Obviously i am feeling a bit worried scared and apprehensive. At home i try my best to keep a sense of normalcy in our home when things are not quite right, kids need normal. My Rozie though has a little something about her ( see above) that doesn't let anything slide. On my way to the doctor the other morning i was sitting on the floor getting things ready for the day feeling pretty down inside , but with a smile on my face for the kids on the outside. My Rozie crawled over to me climbed into my lap and hugged me. A full blown arms stretched an squeezing me kind of hug , and she stayed there for ever, just hugging me.
Why is this so strange...
1. Rozie has never climbed into my lap before, she just hasn't learned to climb yet.
2. Rozie has never hugged me before, never , she just wasn't at that milestone of understanding yet.
3. For Rozie my wild girl who likes to be on the move, never ever sits and my lap little head on my chest , just to hug. This girl is usually fighting with every bit she has to be put down on the floor to find the nearest choking hazard to put in her mouth.
Does this mean i need to dress he in robes and schlep her around in a mini thrown, no. I still will scold this little pickle that thinks my glasses are meant to ripped of my face, and yes Rozie naps are required, not optional.But i do find joy in getting little glimpses of what a special little girl Hashem has sent me, even when she is yanking her father's beard for the 400th time that day.
I love you my Rozie from the moon and back 100 million trillion times over

( i stole that line from a young blogger who writes it to her baby sister at the end of her posts. I love it and it will be my new line, too)

#5 Suprise me.....

Here in my little shtub not much has been happening. My brother has been visiting, and when my brother is in town there is always mischief to be had. We tried on costumes at Target, and decided to throw my husband a surprise party for no reason at all.


I actually love surprises the excitement of finding out what is inside gives me the chills. I also hate surprises , doctor visit surprises, and scary surprises. Rozie's birth was surprise that i'll never forget and i have a love/hate relationship with that scary/happy day.
I have been blogging here day after to promote and advocate Down syndrome awareness.I actually have surprised myself with how many posts Ive done so far this month. I try to advocate with picture and a small amount of words not to overwhelm you. I watch my stats go up with every post and i see all the people clicking on my blog. Its all very exciting, but where are you guys? I know your visiting but i need gratification i need acknowledgment, just like most people do. Please comment and let me know your there, you can even post anonymously. Surprise me guys has my advocating made a difference or am i shouting to no one , do my posts make you think differently about special needs children, or am i blowing smoke to the wind. I would love to hear from each and everyone of you, the good, the bad, the shy, the quiet. Let your voice be heard. Surprise us all!

#4 My fire

Here in this blogging world i seem to spend a lot of time writing about the little ones in my home. There voices have a tendency to take precedence in the house. Their sweet round faces and loud voices make it hard not to click away with my camera and capture each moment of their little lives, but many of you don't know is we also have another strong presence here in our little shtub. Our oldest and sweetest son. He is 15 and doesn't love being in front of my camera and really doesn't like the idea of me blogging about him ( please don't tell him he would just collapse of embarrassment, the way teens do). Our Mel is a key part of this home he has a sweetness and quietness about him that gives a balance to our crazy lives here.

I was just 21 when i had this perfect little boy with gorgeous golden curls, and honestly i knew nothing about raising a child but i did know that i loved this child with an intense fire that burned so strong that i quickly learned how to care for this sweet neshama. As he grew, and even with all the parenting mishaps and mistakes i made, he has become a young man that brings tears to a young mothers eyes just to think about him.
What has impressed me the most about my Mel is how he has handle his siblings as he has entered his teen years.

( for from http://nicolekphotography.com/)
For years he was an only child and i think he wanted siblings as much as we wanted more children, but in our home we were battling years of infertility instead.

(photo from http://nicolekphotography.com/)
I feared that when his brother was born that they were to far apart and we lost our chance for Mel to enjoy true brotherhood.
We were so wrong

He loves both his siblings with an intense blaze ( wonder where he got that from). He has never , really never, been annoyed with them. He wants them in his life 24/7 and they both feel and know that and love him back the way we all dream siblings should.
When Rozie was born he was so worried, for her health, for her future, etc, but he never felt that sense of sadness over the fact that she turned out a little different than we expected. He loved and accepted her from day one.
Mel has been by my side for as long as i can remember and his voice has been my sonet everyday. I love my big boy with a fire that blazes so big and intense that no one can put it out.
Last week my big boy, my young man, my first baby,my love, my everything moved out.
This is a life event that is so common in the Orthodox Jewish world, at 15 boys go to Yeshiva and usually away from home. We packed all his stuff and drove him to New Jersey to his new home for the next four years. I cant put much words into how empty our little shtub feels , because nothing i could write here would be strong enough. He has called a bunch of times and he is loving everyday of his new surroundings. He is excited and has pure joy in his voice, but i miss him, we all do.