Saturday, July 30, 2005

A girls bestfriend can be gray and furry! Posted by Picasa

Just hanging out with my kitty! Posted by Picasa

OK, Mom,,,,now for our puppet show! Boy is this the best kitty in the world....Gracie lets Emma Sage hold her and play with her all day long.  Posted by Picasa

My two sill girls, and a Gracie Kitty! Posted by Picasa

This is the silly sight we had today in the store,,,the happy/joyful moments, just before my heart stopped in fear of my little escape artist. Posted by Picasa

The pendulum swings both ways....

Talk about the pendulum swinging both we went from happy/silly,,,,,to,,,,,terror/fear in the matter of minutes.

Rick, Greta and Otto are at his brothers in East Aurora, NY. Otto is going to Boy scout camp with his Uncle and cousin Harry and Rick will be returning home with Greta and her cousin Ava to visit,,,,so it is just Katrina, Emma Sage and I.

Today we went to TJMaxx as Katrina wanted to pick up a few things before she heads down the shore next week.

The pendulum was swinging in the joyful mode when Emma Sage picks up a yellow bra and proclaims [quite loudly] "I have yellow boobies!".....we laugh and laugh and realize that it is the perfect bra color Katrina was looking for so we add it to our cart. We walk along {reminding Emma Sage that if she is to be a big girl walking with us, she must stay near the cart}.

Katrina goes off to look at clothes and Emma Sage and I head back to checkout the linen aisles. I begin to rummage through the racks looking for my sheet pattern [Ralph Lauren ~ Shelter Island Blue Floral [[If anyone ever runs into king-size fitted sheets in this pattern I would gladly pay you a premium for your sheets]], and the next thing I know I hear,,,,,pitter-patter,,,,,zoom! I turn and there goes Emma Sage running down the back aisle towards the book/toy section.

I high-tail it out of the linens and yell over to Katrina to quickly go towards the other side of the store to cut her off.

I see little braids trailing and hear giggles coming from my bolt of lightening.

I think Katrina is over far enough to corner her, so I continue the same way,,,,,next thing I know, Katrina is looking at me as if I had found Emma Sage and I'm looking at her like "Where is she?".

I panic,,,,,this kid is quick and this is the first time she has ever done something like this.

I start calling her name, pleading with Katrina to run as fast as she can towards the front of the store so she can't get out the doors. My heart is beating way faster than it ever should beat...and I run to the front desk, asking them if they can page the shoppers that if they see a little girl in a sailors dress to please stop that exact moment I hear a woman say "I just saw her run that way" pointing over to the pocketbooks and luggage area....I run over and there I find her,,,,,,modeling in a three-way-mirror....still laughing and giggling.

I call to her....this time my voice has begun to crack and I'm starting to cry. She comes running over to me and I try to explain to her through my tears how scared I was [Which she proceeds to say "Roar,,,,,Emma Sage scare Mommy" and I have to tell her no, not scare me like that,,,but she made mommy so sad because she could not find her. Emma Sage looks up at me with those big blue eyes and starts to cry with me saying ""I'm sorry Mommy".

I just stayed there kneeling down and hugging her.

Life is a Blessing... Posted by Picasa

I'm dancing in the rain....just dancing in the rain....stomping in the puddles.... Posted by Picasa

Summer rain,,,,,,This little girl just loves to jump in puddles! Posted by Picasa

Helping blow out Greta's birthday candles... Posted by Picasa

Thursday, July 28, 2005

Live and Learn....

That is what I believe to be the greatest gift of life,,,,to 'Live and Learn' each day. To explore who we are, what our beliefs are and how we grow, change and evolve, but most importantly to learn from those around us and acknowledge when we are wrong.

The post below was writen in response to a comment that someone posted on a Listserv I belong too, making light of semantics and joking about why someone would choose to use the scientific term T21.

I wrote from my brief understanding of my daughters genetic condition, I also wrote from the emotions of a mother. When I hear the word 'Down syndrome' I immediately think of the term Dr. J. Langdon Down used to descibe children with T21 as 'Mongolian Idiots'. That word to me is synonymous to Dr. Down. So for me, it is a term I dislike. I use 'Down syndrome' often because that is what the general populion understands my daughters genetic disposition to be....but I prefer T21.

But as pointed out by a very respected doctor who probaly understands Down syndrome better than anyone I would like to share his response and to acknowledge that I used the term racist in a very careless way.

"Dr Down was not a racist. He was a compassionate doctor who did a lot for the children under his care and made the first big step torecognizing that the children with this condition had different needs and could be helped. His term "mongolism" reflected the scientific thinking of the day, that there were five races of men that were different of color, features and temperament, and he felt the features of the children with mongolism had similar features to the people of the Mongol race."

For me, I prefer the term Trisomy 21, so it would have been just suffice to state that using Trisomy 21 is the most accurate and non-embedded term to use to descibe my daughters genetic make-up.

Live and Learn.

What's in a name...Terminology et al....

This is the year 2005.

Trisomy 21 is the scientific explanation to what the 'syndrome' is.

I personally dislike the term 'Down syndrome' solely for one reason. Dr. Langdon Down was a racist and I want no association to anyone who is a racist, especially if it is used to 'describe' my daughter

""Down syndrome is named after the 19th century English physician J. Langdon Down who described the condition in 1866. As a matter of fact, Langdon Down was not the first person to describe the condition. It was clearly recognized 20 years earlier by the French physician E. Seguin who described the condition in a book he published in 1846 in Paris. Such historical inaccuracies in naming diseases are common. However, there are stronger grounds for not calling this condition after Langdon Down.

In great error, Langdon Down attributed the condition to a "reversion" to the "mongoloid race." He held that evolution had been reversed and there had been a sort of backslide from the superior Caucasian to the inferior Oriental race. Hence, the name Down syndrome smacks of racism.

The disorder was also once called mongolism, a term now considered perjorative, and to be avoided in English. (It is still used in some countries).

Other names that have been used over the years include mongol, mongoloid, mongolian imbecile, mongoloid idiot, mongoloid deformity, Kalmuck idiocy, Tartar, unfinished child, Langdon-Down syndrome, Down's anomaly, and Down's deformity.

All of these names should, in our view, be jettisoned. The least controversial and most appropriate name for this syndrome may simply be what causes it: TRISOMY 21. Source: MedicineNet's Medical Dictionary

Secondly, Dr. J. Langdon Down was not the first person to publish the condition, so there-fore I believe the syndrome should not have been named after him.

I would actually prefer the 'syndrome' [which to tell you the truth, I have no issues with the fact that my daughter has a 'syndrome' she is and her T21, is what it is].....but I personally would prefer it be named after the late French physician Jerome Lejeune who identified the triplication of the 21st chromosome as the cause of the 'syndrome'.

Dr. Jerome Lejeune was an incredible doctor, teacher, researcher, humanitarian, who in the face of ridicule from colleagues, continued to do work regarding Trisomy 21 [especially in the area of Leukemia and T21] and who believed our children had value and were beautiful. If you have not yet read the book about his life and his work you should. It is called 'Life Is a Blessing: A Biography of Jerome Lejeune-Geneticist, Doctor, Father' by Clara LeJeune.

So from where I sit, it isn't a silly 'name game'. Words have impact on everything we do, and if almost 140 years after Dr. Down's derogatory description of the phenotypes of T21 are considered offensive to most, and it has been proven he was NOT the first published physician to describe it, or more importantly to scientifically identify the syndrome [as Lejeune did], we should be accepting of those who chose to identify the syndrome by its simple, accurate medical term: T21.

Friday, July 22, 2005

A terrible-horrible-no-good-very-bad-day....naw!

Today I had a terrible-horrible-no-good-very-bad-day......naw, not really. Emma Sage was a hoot,,,,,laughing and giggling all day long, and after the following situation happened, she came up to me, put her hands slowly up to her chin, breathed in deeply, exhaled, pulling her hands slowly out and away from her body and told me "Mommy, relax, do Chi"

BUT, this is what happened before my sweet heart reminded me to take a deep breath and that it was going to be OK.......I was painting the hallway,,,,,I had the paint on a stool, Rick called into Otto to get him a cold drink [as he and Greta were outside weedwacking] and Otto forgot I was in the hallway [even though I had reminded the two of them mulitiple times to go through the other door way out of the TV room], Otto and his cousin Mikey came running through the hallway from the TV room and like a [slow motion] movie I watched him crash into the stool, spilling paint all over my new livingroom rug. Needless to say,,,,that was the point that it turned into not such a good time.

Greta ran into the house, Otto and Mikey ran out of the house,,,,got buckets and rags and water,,,,,I quickly ran to the A&P and rented a steamvac,,,,,and Greta and I miraculously cleaned up the coffee late' colored paint from the rug and hardwood floor!

So, did that make you laugh and realize that your day was probably a lot better than mine! lol!!!

Our chalk slate to Celebrate with Patrick the end of a long journey. May this be the end of this chapter of your life sweet boy and may you move forward in health and happiness. Posted by Picasa

Thursday, July 21, 2005

Thank you Kari,,,,It is just perfect! It is so refreshing to meet people in this world who do good-deeds for others. You are truly an amazing and inspirational woman!  Posted by Picasa

Sunday, July 17, 2005

Emma Sage had the greatest time today. She was surrounded by many friends who all were just having the best time playing. Life is truly a blessing and today was a blessed day! Posted by Picasa

What a precious group! We had such a great day celebrating with Anyah! Posted by Picasa

Are we cute or what!?! Posted by Picasa

Hanging out with friends at a birthday party! Posted by Picasa

Helping my friend Anyah celebrate her 4th Birthday! Posted by Picasa

Wednesday, July 13, 2005

May I have a Word....

Please leave a one-word comment that you think best describes me. It can only be one word. No more. Then copy & paste this in your blog so that I may leave a word about you.
From Beanie Baby on the sidebar.

Tuesday, July 12, 2005

I love dalia's.... Posted by Picasa

Bee's in the garden..... Posted by Picasa

Emma Sage and Gracie [her new kitty]. The name came from Emma Sage saying 'Gray kitty' and Katrina thought she was saying 'Gracie' so hence the name. Needless to say, we are having lots of fun these days playing with a little kitten Posted by Picasa

Saturday, July 09, 2005

Greta and Heidi, two BFF's Posted by Picasa

.....and sometimes we even get scared, or tired, or sad and just feel like crying [this time the cry was from fear of the water tube ride],,,though go figure, Emma Sage loved the roller coaster [Grovers Vapor] and went on that three times! Posted by Picasa

Sisters, nothing is more special than the bond of sisters. Emma Sage has the greatest relationships with both her sisters.....they are all lucky girls. Posted by Picasa

I've been so busy to be able sit and write [let alone think of logical thoughts] so I decided to post some of the love and joy we cherish and fill our days with in pictures. Posted by Picasa

I say this all the time, and I think people must think I'm crazy, but these kids of mine make me laugh all day long! Posted by Picasa

Wednesday, July 06, 2005

To You, My Sisters
© Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children ungergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars

Monday, July 04, 2005

Even though this shot came out blurry,,,,I love it, because my little girl is just so happy to be sitting next to her most favorite of people [or monsters] in the whole wide world.....Elmo is King in her eyes....and I have to agree,,,,he brings out the greatest smiles and giggles from my little girl. Posted by Picasa