Greed - Wabi Sabi - Grey's Anatomy

This is a sort of rant ....

This has been a week in my life where I've hit a point of clarity. Where all signs in the Universe - by my beliefs, God - seem to be speaking to me....

Today in Church we discussed greed - holding wealth as an Idol. In that discussion, we referenced Jesus stating that in order to be trusted with the wonderful gifts of eternity where what we will have is so much, we must first prove ourselves in this life where what we have is so little in comparison. It reminded me of the quote my mother has always said to me... especially at the time of Bri's diagnosis, "Jill, the most we get in this life is 100 years. There's a much more important life after this one that means so much more."

Last week I received a book in the mail I had ordered after listening to NPR - "The Wabi Sabi House." It's about the concept of appreciating the Imperfect, the Unfinished, Simplicity... The author goes on to extend this idea beyond aesthetics to the very way one leads life, appreciating and finding the beauty in the here and now of a less than "idyllic" circumstance.


On Thursday I watched Greys Anatomy, where one of my favorite characters had an abortion because her love for her occupational aspirations out shined any hope of becoming a mother.

So what do I gather from all of this? One, I think it's "greedy" to want a "perfect" baby. Let's be frank here - no child is perfect and no child will ever grow up to be perfect. While there are often obstacles and health concerns that go along with a child having Down Syndrome... this by no means that a baby with this condition is born any less perfect than any other child. Every child that comes into this world will make mistakes, will have health concerns, behavioral complexities, etc. The diagnosis of Down Syndrome simply gives you a clue as to what you might be facing.


Pulling in my Wabi Sabi read, by societies standards having Down Syndrome is an imperfection. I might argue, however, that it is this very uniqueness that makes my daughter so special. Down Syndrome in my life has given me the rose colored glasses with which I see the world. This diagnosis has given me the ability to appreciate every single milestone reached and moment I have with our little girl. My "imperfect" little girl is more appreciated by those around her than any child I know.

As for Grey's Anatomy, what might have made for a rating-filled plot line proved more than disappointing on my end. I think the greatest gift one can have is to become a mother... to give that up on account of a occupational aspirations is unfathomable in my eyes. It seems selfish. It seems greedy.


I'm by no means perfect or without humanly desires for perfection. I simply mean to bring to light that we are all human, and imperfect. A striking 94% of babies with Down Syndrome are aborted each year upon pre-natal diagnosis. This makes me sad for the babies, but even more sad for the mommies who miss out on such a beautiful perspective into the world and lovely memories they would have had with these soulful little babies.


I will end with this.... On Friday morning we woke up as a family, and my husband commented, "Look how beautiful she is! I can't believe how everyone wanted us to have an abortion." To which I quickly replied, "Not everyone hun, just a few particular assholes." "Ass-Hooo" Brianna reiterated. . . Oops, guess we won't use that description anymore! First thing I thought was the "Little Fockers" movie... then I was proud of our daughter and her ability to repeat so quickly, then I realized again that I can no longer say whatever I like around this little lady. I took humor in the moment, and thanked God for my family.

Typical Saturday

7:30 I wake up to a voice saying "Up! Up!" Sleepy-eyed, I walk into the nursery to find a beautiful little girl standing in her crip with her hands reaching up and out to me. I brush her long blonde bangs out of her eyes and pick her her up. "Common, lets go potty" I take her to the bathroom, take off her dry diaper, put her on the the potty, and she tinkles. "Yay!!! Good girl! Mommy's so proud of you!" We both smile. Brianna says "All Done!" I put on her daiper "Puh Puh" she says. "Yes, you went Potty. You are a big girl now!" 7:45 I let Gemma outside. Brianna walks over to the glass door, knocks on it, and says "Duh Duh" for dog and waves to Gemma. Meanwhile, I make her Organic Cherrios (Trader Joe's Brand), Organic Oranges, and a sippy cup of Organic Whole Milk. I put her in her high chair and she eats with her spoon. She takes a couple sips of milk, looks me in the eye, throws her cup. I pick it up, without saying a word. Defiantly, she looks me in the eye again, very serious faced, and throws her cup. Again, not saying a word, I put the cup in the fridge. 8:30 Brianna watches Baby Einstein while Mommy does a load of dishes. 9:00 Brianna and Mommy fold laundry. By the time mommy's done, Brianna has 3 articles of clothing successfully over her head - none of which are shirts of course (1 pair of dady's boxers, a sports bra, and the arm-hole of one of daddy's shirts. 9:30 In the toy room, Mommy browses on the lap-top while Brianna plays. 10:00 The door bell rings, Brianna hears her dad's voice. She says "Da Da!" and runs down the hall to her dad. He scoops her up, gives her a hug, tells her she's beautiful and that he missed her. (Dad had a special project and had to work this morning) 11:00 Organic 3-Cheese Pizza, Organic Grapes & Banana, and Organic Whole Milk for lunch. This time, Brianna drinks her milk rather than throwing it. When she's done, I give her Organic "Cheetos" as a treat. She eats them all, "More" she says and signs. I proudly give her more. she eats them all. "All Done!" I clean her up. 12:30 Mommy has more laundry to fold. Brianna's playing with Stacking-Eggs. She decides that its a good idea to drop them down a small crevis between our mattress and bed frame. When I ask her what she's doing, she giggles hysterically. She runs over to me, hugs my leg and says "I-Did-It! I-Did-It!" (her favorite phrase). 1:00 Time for nap. Standing in her crib, Brianna knocks on the near window trying to get the attention of the neighbors outside. Ten minutes later, she falls asleep. 2:00 I go in the Nursery check on my blessed angel. Still sleeping. I think to myself how wonderful our life is. I silently thank my mother for raising me to know that each baby is perfect and deserves to live so that when naysayers recommended abortion I knew better. I thank God for another wonderful day with my daughter. That's our Saturday so far. Tonight our friends who are Brianna's God-Parents are coming over for Wings. Makes for a nice lil' Saturday.

Brianna - 20 Months

I haven't written in far too long... I don't have much time tonight - but something is better than nothing!!!

How's Brianna? She's doing great! It is impossible to be anything but elated when she is around.

WALKING
Brianna began walking at month 20!!! Whoo hoo! The expected age for a child with Down Syndrome is 24 months - so we consider this an accomplishment. She is so proud of herself with each step she takes.

I will say that there were moments I was sad that she didn't walk right away at 12 months. Brianna did everything else on time. However, those moments were few and far between because as I say all of the time - how can you be sad about someone who is so happy?

EAR INFECTIONS
Ooooh, scorn you ear infections!!! Brianna has had one on top of another - and yes, she has tubes. We are hopeful that after replacing her right tube and with warm weather around the corner her health will improve. While it bothers me to have Brianna in any sort of pain, and Dr.'s office visits are not the way we would choose to spend our time - we are extremely thankful that this is the extent of Brianna's health concerns.

ACCOMPLISHMENTS - ( Not an Inclusive List - Pulling these off the top of my head )
* Sing's & Gestures: Baby Fishy, Twinkle Twinkle, Head - Shoulders - Knees - & - Toes
* Words: Mama, Dada, I-Did-It, Right-There, Dog (Doh), More, All Done, Up, Bye-Bye, Hi, Hello, Poop (hehe)
* Signs: Fish, Star, More, All Done, Eat, Milk
* Loves Pointing and saying "Right There"
* Imitates using the forehead thermometer on mom and dad
* Eats with Fork
* Drinks from Sippy Cup
* Doing VERY well with Potty Training (Dry Yesterday & Tonight at home!!!)
* Climbs Toddler Jungle-Gym, Goes Down Slide
* Climbs Stairs

HAIR CUT
Brianna got her first professional haircut this month. She was perfect!

Year One Evaluation

Over the past 2 weeks, Brianna had her 1 year evaluation.



It went great. And then it went okay.



The first week Brianna's communication skills were evaluated. The great news is that Brianna is communicating at an age appropriate level.



The next week, Brianna's fine and gross motor skills were assessed. In a nut-shell, Brianna's at a 9-12 month level depending on the task. She's 13 months. For the first time, I had heard that Brianna is delayed.



Boo hoo, poor me right? I know there are so many worse things in life than my child not being able to put pegs on a board or be walking by 13 months. As much as I could rationalise it, I still felt bad...

Brianna has done so amazingly well over the past year that I have not had to deal with much of the negatives of Down Syndrome. When we received her diagnosis almost two years ago (when she was 12 weeks of gestation in utero), we were devastated. We then came to terms with what to expect, we came to a stage of acceptance. But then Bri was born, and she did well - with everything. Any possible thing that could have gone wrong with her didn't, or if it did, she was the best case scenario. To boot, she developed on par with the rate of typically developing children. Brianna has Down Syndrome, we know this. But she's not following the path one would expect of a child with Down Syndrome. At some point, I just decided that I would give her the same expectations of a typically developing child. And now, as of last week, I was given the news that she is in fact behind.

So what now? Do I accept that Brianna is going to be delayed because she has Down Syndrome?

Just as I started thinking heavily about all of this, Brianna laughed loudly catching my attention. I looked up, and there she was, flipping through the pages of one of her board books and laughing hysterically. Her laughter grabbed me out of my funk and put things into perspective. Brianna is a healthy, happy child. Extra emphasis on the HAPPY.

People often ask me how I stay so positive whilst having a child with Down Syndrome. Brianna is how. Brianna is always happy. Brianna is a fighter. There is nothing about her that is sad, or negative. She is not a defeatist.

So, am I a going to just except that Brianna is destined to be delayed? Absolutely not. I will use this imperfect evaluation as motivation to work that much harder to educate Brianna and be that much more dedicated to her daily therapies and exercises. I am revitalised in committing myself to know as much about Down Syndrome as possible so that I can be the best resource to Brianna that I can be.

A week after we had Brianna, a group of doctors specialising in Down Syndrome from the Waisman center visited us at the NICU. Throughout our meeting, they informed us that the average person with Down Syndrome ultimately levels off their education at that of a third grader. I remember looking up at them and firmly saying, "No, I will not accept that."

I will love Brianna and view her as perfect regardless of her educational level or other abilities. But I am her Mommy, and it is my job to fight for her. It is my innate duty to make sure that she has been given the best opportunities and the most firm foundation with which to build her life upon.

Milestones - Age 1

Brianna is an awesome little girl! We are so proud of all of the super-cool things she's doing.

At Age 1, here are some fo the fun things Brianna can do:

COGNITIVE MILESTONES
- Understands "No" and Simple Instructions


* Ex. Brianna can do many things with her Baby Doll when asked! If you ask her to feed her baby a bottle, she will. If you ask her to brush the baby's hair, she will. If you ask her to feed the baby with a fork, she will. The list goes on!




















* Ex. If you hold two objects in front of Brianna (ex. a Banana and a Phone) and ask her to give you one specifically, she will


- Identification
* Brianna knows sooooo much! When we read her books, if you ask her to point something out on the page, she will (ex. Flower, Door, Ice-Cream).
* We have a book with baby animals and their moms. If we ask Bri to show us the babies versus the mommies, she knows who's who
* Plays Games
Bri likes to crawl towards things she knows she's not allowed to touch (e.g. the garbage can). She crawls super fast and giggles when she's caught. I move her, and she does it all over again!
* Pat-a-Cake


LANGUAGE:
- Says: All Done, Mama, Dada, More, Doggie
- Signs: All Done, More, Eat, Milk, (Wave's Hi / Bye)



GROSS MOTOR SKILLS:
- Stands while holding onto things
- Pulls herself to standing
- Crawls (long distances, fast!)
- Sits alone
- Imitates other's activities
- Indicates with gestures




OTHER
- Feeds Herself (with spoon, foods cut up, etc)
- Feeds Herself with Cups and Bottles
- Colors with Crayola Baby Paints
- Stacks Blocks / Knocks Down
- Stanks Rings on a Pole







- Puzzles, puts them back in place

Thankful

THANKFUL

Having Brianna has made us thankful.

Thankful for every moment.

At just twelve weeks of gestation, we were told Brianna had less than a 50% chance of surviving our pregnancy. Three days later we were told she had Down Syndrome. For the next 6 months, we were thankful for each day that Brianna was alive.

It is true that we were initially devastated by the diagnosis of Brianna having Down Syndrome. However, being told that she was not expected to live put everything into perspective for us. By the time Brianna was born, we were so happy to finally meet our daughter that Down Syndrome was the least of our concerns. We were thankful to hold her in our arms. Thankful to finally meet our little girl.

The reality is that Down Syndrome brings with it a slew of possible delays and health complications. During our turbulent pregnancy, we had come to terms with all of this and prepared ourselves. We knew what to expect. Now, every time that Brianna reaches a milestone, we are thankful. Every time she has a positive doctor's appointment, we are thankful.

A year has passed since Brianna was born and not a day goes by that I am not absolutely overjoyed to hold her in my arms. That feeling has never faded. too often in life people take for granted their blessings and become overwhelmed with tedious negatives. As terrible as our pregnancy was, those 6 months taught us to be thankful for every moment we have with our daughter. No matter what life throws at us, we are able to put into perspective knowing our family is healthy.

As for Brianna having Down Syndrome, it has brought to our lives a new level of appreciation for all of Brianna's accomplishments.

Every day on earth that we get to spend together is a miracle, and we can't help but be thankful for our little blessing Brianna Rose.

A Week of Many Firsts!

On Saturday July 3rd, we celebrated Brianna's 1st Birthday! And did we have a reason to celebrate! Throughout our pregnancy we were given less than a 50% chance that Brianna would survive and were given the daunting prognosis that she would require surgery immediately after birth... if she would make it that far (more on that story later). Brianna not only has survived, she has conquered!

We began our week long celebration on Saturday, June 26th with a Birthday Party Extravaganza. Over 50 of our closest friends and family came to celebrate our miracle baby. Yes, I said over 50! Our little lady is loved by a lot of people! We were so happy to get to see everyone and share some great food!

On Tuesday, Brianna went to her First Brewer's game. She doesn't care for television yet, unless its watching the Brewers with Daddy - it's true!

On Wednesday, Brianna went to her first Concert on the Square. She loved it! Since she was the size of an orange in-utero, Brianna began listening to classical music. Upon being born, music became part of Brianna's daily lesson plan. Studies have shown that having babies listen to classical music promotes cognitive development, improving language and math skills later on... that, and its relaxing! So, we had our first family picnic on the Capital Square, listening to the Wisconsin Chamber Orchestra. Great food, great music, great weather - who could ask for a better way to spend an evening? Brianna was dancing, Cliff was eating, and I got to take pictures!

On Thursday Brianna had a VERY important First... she said MA-MA!!!!! I was picking Brianna up from Grammy and Grandpas, and she kept making the "muh" sound with her mouth. Jokingly, I said to her, "Brianna, if you say Ma-Ma, I will buy you some toys." Two seconds later, she shouted MA-MA! My brothers Jon and Ken and my sister Kaylene were all witnesses! We couldn't believe our ears! I quickly replied, "Brianna, if if you say Ma-Ma, I will give you Ice-Cream when we get home,"... two seconds later, she said MA-MA again! I of course held up my end of the deal, getting Brianna a few new toys and giving her a spoonful of organic frozen yogurt. Hey, I'm not above positive reinforcement! Brianna has been saying Da-da, All-Done, and More for such a long time now - I was definitely happy to finally hear ma-ma!

Saturday, July 3rd was Brianna's actual Birthday. We made our First trip to Toys-R-Us and let her pick out the toys she liked. One of the favorite toys she picked is a Jeep Liberty Renegade Baby Walker which she now zooms around our kitchen in. She also picked out a Baby Doll with a bunch of accessories. If you say to Brianna, "Feed your baby her bottle," she will do just that. She also knows how to comb the baby's hair, feed her with a spoon, and to give her kisses. We are so proud of our smart little girl! We then spent the day at Grammy and Grandpa's house enjoying Grandpa's famous shish-ka-bobs. Brianna got to blow out the Headless-Hockey-Player candle, a Fiala tradition. After such a fun day, we headed home to watch Rhythm and Booms from our front porch. Although Brianna enjoyed the fire-works, she was more concerned with caring for her new dolly.

Well, this was a rather long blog - but it was an eventful week! I promise to keep coming blogs more succinct. Have a great day everyone!