Sign language class

A moment

I'm not sure why I've been so emotional lately but I have. I cry all the time! Not boo-hoo crying, just tearing up. Today was our first sign language class since last year and I needed to run a couple of errands before we met everyone for lunch. Lila was being CRAZY. Crazy, crazy. Typical 2 year old but she was doing everything possible to make sure we weren't going to leave on time. I'm running around trying to get everything together and of course she wants me to hold her. I thought to myself.... gosh, I only have 2 hands. Fast forward to lunch. I was waiting on my friend Pam when a mom and 3 kids walked into the restaurant. Two girls around the ages of 3 and 4, and a baby in a stroller. She sat down in a booth near us and I notice that she only has one hand. Seriously. And she's making everything work. She using her teeth and her body in place of the missing hand. Of course, I tear up, then get mad at myself for what I'd been thinking earlier. So when Pam gets there we start talking about things that we take for granted every day. This lady and her kids get up to leave and she calls one of the little girls Lila. They have to walk right by our table so I ask her - is your daughter's name Lila? That's my daughters name. So we talk for a few minutes about names and hair bows and other things. And then Pam's daughter Eliza grabs this lady's arm where her hand would be and this might sound weird but it was moment that I won't forget anytime soon. She had been admiring our little angels with Down Syndrome and then Eliza, in her innocence, grabs this lady in what must be her most vulnerable place. It was a beautiful, raw, here -we -all -are- with- our- imperfections moment. And it felt really, really good. No masks, no judgement. And when I looked in that lady's eyes, I knew she felt the same way. If only we could stay in that moment. Where we just accept each other's flaws and imperfections, knowing that we are loved back in the same unconditional way.

Linda

Had to share

Our Fragile Emissary
By: Nancy Tupper Ling

With modern screening and such
they wonder why
you're here, on this earth
in our home
and in our arms,
after all, anyone
with any sense would have resolved
this problem of you
pre-birth, pre pain.

Blonde Beauty,
tiny as you are,
you catch their stares,
strangers' second glances
into tender baby blues.
And your young
sweet ears hear whisperings
("Down's," "defects")
words dropped loosely
at extra-chromosomed girls.

With such stinging receptions
how we long to shelter you,
surround you; keep your
gentle smiles to ourselves.
Instead, we hold you
up, for others to see;
let you, our fragile emissary
speak to an imperfect world.


Linda

Gotta love Progress

Lila dressing a doll at therapy today. See the bubbles beside her? She blew bubbles today for the first time ever. I didn't even have my camera out when she did it because I just wasn't expecting it. I was, and still am, so EXCITED about this. We have been working on this for about a year and it finally happened. Go baby girl!



And, as reported earlier, Lila has been standing up in the middle of the room. Unprompted, unsolicited. She just stands up. Tonight she even tried to take a step! That's never happened before. The pictures of her standing are a little blurry but I just had to post them!

I like this one because we were watching the beginning of American Idol. Lila was singing so loudly that we couldn't hear the television. It was too funny. Then all of a sudden she stood up, still singing. That's real talent!

\

Linda

Your thoughts please

Every day before Lila takes a nap we read books in her room. She chooses the books from the stack beside the chair.

This one? No. This one? No. This one? NO! How about this one? Uh-huh. And so we read. And read. There's one book that we read every day. It's a counting book. She loves it- she holds my finger with her hand and we count the items on each page. Yesterday the pages of the book stuck together and we went from 1 to 3. She said No! 2! The number 2 is on the 3 page so I said where's the 2? And she pointed at the 2. So I asked her a few more numbers and she got all of them right but the number 8.

So I started thinking... about the way I do things, the things I try to teach her. Sometimes I think I'm so busy making sure that I accept her the way she is that I forget how much potential she has. I know how fast she catches on to most things but I don't want to push her too hard- where life just feels like a bunch of work. Have I been so careful not to expect too much of her that I don't expect enough of her? I'm trying to figure it out. We sing songs a lot, say the alphabet, identify colors, identify shapes, draw shapes on her magnadoodle, etc. But I never really quiz her. Is that a bad thing?

One more thought I'm having. Why don't I quiz her? Is it because I don't want to be disappointed? Am I thinking this too much? Would love to hear your thoughts- even anonymous comments- especially if you have a kid with DS. : )

EDIT: Obviously there's no way that anyone but me could know if there's some subconscious reason that I don't quiz Lila about the things we work on. That wasn't a question that I expected to be answered, it was just a thought I had as I was blogging.

Linda

Back to my roots.... literally

I had a hair appointment today- I went back to my natural hair color so you know THAT took a while. : ) I brought along my latest favorite book- it's called Broken Open. Don't go out and buy it- I read/ love a lot of books that other people don't necessarily care for. I loved The Shack- very controversial book. I also loved "What's so amazing about grace" and don't know very many people that enjoyed it. So, it's not necessarily good to follow my lead when it comes to books.

Broken Open is a book that deals with difficulties in life and how they help us grow. It's filled with some pretty sad stories. So, of course, as Ashley is putting color on my hair I'm biting my cheeks and trying hard not to cry but it's not working. Tears are streaming down my cheeks and she finally asks me, "Are you okay?" Yes, I tell her, I'm fine, but there are some really sad stories in this book and I can't help but cry. Stop reading it, she tells me. Good idea but I just can't. Not only are the stories very moving, the endings are so inspirational.

I haven't needed to read sad stories to have a reason to cry this week. There's been enough sadness in real life. Not necessarily in my life but in the lives of people that I care deeply about. I've always carried other people's burdens like that. I'm not sure how to stop. I pray for them, and try to put things in God's hands, but I have a hard time leaving them there.

So, if you pray, and if you think about it, please say a prayer for my sister Brenda, my friend Pam, and a baby whom I've never met that was abandoned by his parents in the NICU because he has Down Syndrome. Abandoning a baby with Down Syndrome not only brings me incredible sadness, it infuriates me. And I know that horrible things happen every day..... children are abandoned, children are abused.... I know. But ever since I heard about this, when I look into Lila's eyes, I think about it.

Linda

I came across something today......

Something that brought back a lot of emotion. I remember the first time that I ever read it. I was upstairs in the office, which is now Lila's room. The memory is so vivid in my mind; I don't think I will ever forget it. I was sitting at the computer desk doing google searches on Down Syndrome. It was the week of May 7, 2006. I was 17 weeks pregnant with our beautiful daughter, Lila. At the time I knew that I was pregnant with a girl, named Lila after my mother, and that she had Down Syndrome. It was the day after we had received the results of the amnio. At 11 weeks we had the nuchal translucency test resulting in a 20% or 1 in 5 chance of having a child with DS. The markers were there and the doctor pointed them out on the screen as we stared, wordlessly, not knowing what to say, or even think. I had an amnio 5 weeks later.

During the period of time between the nuchal and the amnio, I knew in my heart that this baby had Down Syndrome. Tiffani and Justin told me that they knew it too, but Nick wasn't in the same place. I'm not sure if it was denial or hope, but he just wasn't ready to go there. We were sitting on the couch together when we got the call. "Mrs. Nargi, this is Dr. Nies. Just wanted to let you know the results of the amnio. You're having a girl and she does in fact have Down Syndrome." I don't really remember the rest of the conversation. Nick knew, by the expression on my face and by my response, I'm sure. The rest of the day is really a blur. Even though I knew in my heart... to have confirmation... that was something.

So back to my memory. I was sitting in the office doing research on Down Syndrome. Struggling to take it all in. Trying not to read the negative things but being drawn to them anyway. Wanting to soak up all of the information that my weary mind could contain. I came across this story, written by a father of a young boy with Down Syndrome. I cried like a baby when I found it today, just like I did the first time I ever read it. You may have seen it before, but it bears repeating. (I'm sure that this was written before the big emphasis on "people first" language but still so beautiful...)

He stood there, dignified, in his polyester fastfood uniform, earnestly waiting for the bus and oblivious to the river of traffic around him, to the forced smiles and brief, uneasy glances from passersby.

In a world of multiple urgencies and lives racing at 50 mghz, he had one focus only--in this case, the Laurel Canyon bus to McDonald' s. He was alone, and he needed to concentrate. He had a job. That meant a schedule and responsibilities.

Stopped at the light, I watched him through my windshield. He was eighteen or so, short black hair slightly askew, with the thick body and unfinished facial features so common to Down's syndrome. Three years ago, I would have looked away, just as the other people nearby on the street were doing now.

But instead I just watched. I find that I can't look away anymore, not from Down's people, not since Danny.

My wife and I were both forty-one when she became pregnant. It was a surprise. We had been out of the baby business for nine years. Suann was teaching full time and going to grad school. We had three older kids. I had my hands full with my own job. And yet the news was like a wonderful fresh wind. Sure it was inconvenient, and yes, the future would get a drastic overhaul. But we were also excited. After all, we were veterans, more experienced and relaxed, and more financially stable. Secretly too, even more than my wife, l just wasn't ready to let the idea of babies go. All those mistakes with the first three-- well, this time, we'd get it right.

We knew the risks. We got the standard, "so-you-can't-sue-me-later" briefing from the obstetrician on birth defects in older women, but both of us had been active on the abortion issue for more than a decade. It was never an option. Even after the first, slight hint of trouble turned up in a blood test, we declined an amniocentesis. What was the point? The results would be unreliable, and the test itself could hurt the baby. Better to leave it in God's hands; he'd handle it; which, in his own way, he did.

I remember the exact moment when I knew, with my heart anyway, that things had gone south. We were in the ob-gyn's office, and on the ultrasound screen, as the baby swam serenely in the womb, the doctor measured the fetus's arm once, then again, and then a third and fourth time. Suann, smiling, devoured the baby with her eyes. But I knew, and so did the doctor. There' s a statistical relationship between bone-structure abnormalities, particularly in the upper arm, and Down's syndrome; not enough to be conclusive, but enough to spark shallow words of reassurance and advice for a second opinion.

Two weeks later, Danny was born by emergency C-section, blue, limp, underweight, lungs filled with fluid. Three things happened in rapid succession: They suctioned the liquid from his lungs; I held him as my wife baptized him; and they took him away to intensive care.

It's then, with the baby out of your arms and the big emptiness just beginning, that your heart is most like a vacuum, and into the space comes a rush of feelings that are hot and contradictory, that make you ashamed and exalted at the same time: anger at God; fear about the future; helplessness and failure without a bottom; but also an absolute clarity that you can handle this; an urgency to protect the baby and his mother, to somehow make the cup pass by cutting a deal with God; or hey, maybe there's been a mistake; and even, most humiliating of all, a wheedling pride that whispers: Maybe I can use this.

You discover a lot about yourself. I assumed, with the callousness writers seem to perfect, that this "Danny thing" would be the source of so much good material. Well, he is; but not remotely in the way I expected. For the two years since his birth, every time I've sat down to write about him, an arctic silence has settled into my head. Danny will not be used. He is too intimate, too demanding, too funny, too eager to play; he does not fit conveniently into a prefabbed holding pen for the mentally handicapped. And I am too ignorant and not far enough along the road to offer any advice, other than to recount the experience of my own family.

I know that this is doable. It hasn't been easy, but it hasn't been a cross either. You stop thinking like that. Danny's just here, he's part of our normal routine. You adjust. Our manage has the same love and strengths, and also the same faultlines, it always had. So does the family. You learn to stop melodramatizing; you get tired of your own bathos.

I also know that we've been given a gift. A friend, Chicago novelist Patrick Creevy (Lake Shore Drive), the brother of one Down's person and father of a Down's daughter, puts it this way: "The best thing [about a mentally handicapped child] is having a son or a daughter in whom you're never disappointed; you're absolutely out of the business of disappointment .... So many of the expectations that in parents turn tragic, we're safe from. And in its place comes this wonderful, unconditional love, an unburdening from the hunger for perfection."

It's a kind of redemption. You enter a community--parents of sick and handicapped children--filled with far harder stories than Down's syndrome; where quiet, heroic love is an ordinary affair, and you learn from it. Danny's brothers and sister are a part of that now; they know what the imperfect look and think and feel like. They aren't afraid.

I also know, as my novelist friend says, that a "supposed normality which begins to eliminate 'otherness' in the name of its own self-image" is profoundly evil, and that "[words like pro-choice,] while they're supposed to embody liberalism, are really the worst and most terrifying kind of conservatism."

Down's syndrome children are becoming extinct. Most are now aborted before they can be born.

Ninety percent of Down's children are only mildly to moderately retarded. And while they are prone to a wide variety of physical ailments, nearly all are treatable. In fact, most Down's children, with love and care, can live happy, productive, surprisingly independent lives.

So whenever I pass that young Down's man in his McDonald's uniform, I look his way. I'll tell you why. There is a person there; someone with courage. He has ventured into a world that doesn't see him, and in his own way, he is succeeding in it. I look at him, I watch him, I pray for the eyes to really see him--for my own sake. The problem, I have learned from Danny, is not with his humanity, but with mine.

Linda

That's what she's trying to tell you

As with most kids that can't speak well or at all, we've been trying to teach Lila different ways of communicating instead of just whining. We always tell her that if she wants down, just point down and say please. Today she was sitting in her high chair watching Play with me Sesame (she still has reflux so still has to sit up 30 minutes after every meal). She kept pointing down and saying "Puzz", her version of please. I'm looking around at the toys and books on the floor, trying to figure out what she wants. One by one I ask her "Do you want this? No. "Do you want this?" No. After lifting up about 10 things to show her, at which point she is completely annoyed with me, I finally figure out that she's doing what we told her to do. Down, please! Duh!

Linda

I'll show you "poo poo"

Lila is totally clueless when it comes to potty training and that's my fault. Lately I've started bringing her into the bathroom with me. "Mommy's going potty, Lila! Can you hear mommy going potty?" I'm just trying to bring an awareness of potty and that's the only way I know to do it! (Don't worry, I've been doing some research and I'm learning.) Anyway, every time I smell that Lila has a dirty diaper I say "Lila, did you go poo poo?" When I'm changing her I tell her that I have to change her diaper because she went poo poo. "Can you say poo poo Lila?" Today Lila was in her playroom while I was cleaning the kitchen and all of a sudden this horrible smell permeated the air of the entire first floor. I went over to the gate and did the routine "Lila, did you go poo poo?" Lord, I hope so! I laid her on the couch in the playroom, talking about changing diapers and going poo poo. When I took her pants off she took 3 fingers, reached inside of her onesie and diaper, pulled them out and said "poo poo Mama!" And you know the rest.

Linda

Letter to the school board-

Sorry for the repeat picture- this is the pic that I chose for the top of the handout to the school board.

My name is Linda Nargi. My husband and I have a beautiful 2 year old daughter named Lila. She has Down Syndrome. Lila currently attends the Early Childhood Special Education program at Creighton’s Corner Elementary school in Brambleton. She has a wonderful teacher and a caring aid. She is receiving PT, OT and speech services. Her therapists and teachers challenge her and work with her on skills that come naturally to most children. The current proposed budget cuts that affect the special education department are very troubling to us. We live in Ashburn Village and our daughter attends school in Brambleton. There are 7 elementary schools that are much closer to our house but either the special education programs are full or they simply aren’t offered in those schools. I’m not sure how the proposal to reduce the number of special education teacher and aid positions in the future can even be considered when the current special education program doesn’t have enough staff to support the needs of the county. I’m not here to ask you to keep the same number of activity buses available for after- school activities and field trips or to discuss the expense of a parking pass for my child. I’m not asking you to continue to cover the cost of extracurricular activities or for new band uniforms. It is not my intent to minimize the importance of the concerns of my fellow parents, I just don’t feel that they should be put in the same category as special education. While our family would not change our angel for anything in the world, we did not choose this journey. This path was chosen for us and we are doing the very best we can to ensure that our daughter has a full and productive life. I’m asking you to put yourself in our shoes. What would you do if your child had an intellectual disability? How would you vote if it directly affected your family? I’m asking you, for the sake of our daughter and all of the other kids in Loudoun County with intellectual disabilities, not to approve the proposed budget cuts that impact special education. Please do not take away their opportunity to move forward.

Linda

Sisters

Tiffani watched Lila last night so that Nick and I could go out. A very rare occurrence, by our own choosing. We had a lot of fun. I was taking some pictures this morning when I noticed that Tif had taken some last night. And she might be mad at me for posting this but I think it's cute so here it is. I love the way Lila's looking at her. She adores her big sister and it shows.

Here's my favorite:

Thanks, Tif.

Linda

Lila's parents are ignoring her

Lila's behind the gate of her playroom and it's a good thing. Nick and I are glued to the television, in awe of the magnificent number of people that are attending the inauguration.

I didn't sleep well last night. It could have something to do with the vanilla bean cheesecake that I ate last night around 9:00 p.m. at our friend's house. I didn't even want the cheesecake! Then again, nobody forced me to eat it. : ) Caffeine that late in the day has never served me well. The older I get, the more if affects me. I have a lot on my mind and not being able to sleep provided me with the opportunity to ponder everything. I had a physical yesterday. As I have recently been thrust into the "high risk" category for getting breast and/or ovarian cancer because of our significant family history, I had a lot of questions for the doctor. To give you a little history, I had a hysterectomy in November of 2008 but I kept my ovaries. 1 day after my hysterectomy I got a urinary tract infection which is quite common. In the next 8 months I had 11 urinary tract infections. Not that common. I saw a urologist, had an ultrasound and an MRI. Got nowhere. I had incredible pain and unexplainable weight gain. I went to our family doctor after getting nowhere with the urologist. He told me that he suspected an ovarian cyst and wanted to rule out ovarian cancer. He took some blood to test my hormones and sent me for a pelvic ultrasound. It was determined that I had cysts on both of my ovaries. The cyst on my left ovary was hemorrhaging. This would explain the pain, the weight gain and the urinary tract infections. I was happy to have some answers. After the ultrasound the doctor 's nurse called to tell me that everything looked good- my blood tests came back normal and the ultrasound didn't look like cancer. Great! Back to yesterday. I couldn't get in with our doctor so I made an appointment with his PA. I have seen her before and like her very much. We were reviewing my medical history and she asked me about the follow-up from my last ultrasound. I told her that the nurse had called to tell me that everything looked fine and that there was no need for follow-up. She looked at me, said "excuse me" and left the room. She came back in a few minutes and told me that the radiologist that read my films had recommended future ultrasounds and close follow-up to monitor the cysts in both ovaries. What? Apparently there WAS cause for concern and either my doctor never read the results or mis-read the results. Not good. I am going for a follow up ultrasound this Friday and it says right on my order ovarian cancer. Nice. I'm also going for a mammogram on Monday- I'm due for another one anyway- but I will be getting mammograms twice a year now due to my risk factor.

So I guess to say that I'm scared right now is a bit of an understatement. I'm trying not to think about it but it's always there in the back of my mind. I think about my pregnancy with Lila- and the number of times we were told to prepare ourselves that she wouldn't even survive the pregnancy. God gave us this beautiful child- surely He's going to allow me to live to take care of her and fight for her. That's a bit extreme and I realize that but it's one of the thoughts running through my head.

Enough about that. I'm signing off to watch the inauguration. Please say a prayer for me and I will post again about this when I get results.

Linda

Can You Tell?

Many times I wonder As I go throughout the day,
Can you tell that I am special, When you look my way?
Can you tell that I am different, When you look into my eyes,
And see the tiny Brushfield spots, That sparkle when I smile?
When you see my chubby little hands, The line so deep and long,
Can you tell that I'm unique, When I sign to you in song?
Can you tell by looking at my face, So sweet and full of joy,
That I'm as precious as they come, Mommy's Little Boy?
And Daddy's Little Girl When she dances all around,
Can you tell by the way she twirls, In her ballerina gown?
Can you tell by my expressions, By the way my body moves,
By the little things that differ, From the children known to you?
Can you tell that I'm a blessing, Sent from up above,
To live here on this earth with you, And fill your world with love?
Can you tell that I have feelings, The same as all of you,
Sometimes I laugh, sometime I cry, My heart is human, too.
Can you tell that I am worthy? Do you see me less than whole?
I hope you can appreciate, My selfless perfect soul.
My love is unconditional, Loyal 'til the end.
Can you tell that I am capable, Of being your best friend?
Can you tell that just like other kids,I love to run and play.
But, at times I need to do these things, In my special way.
Don't judge from my appearance, There are differences, it's true.
But, when you really think of it, Can you tell I'm just like you?
by Becky Bowen

Lila and Samantha's playdate

Lila and Samantha had their first playdate today. Lila was miserable due to her chronic constipation but they still had a great time. Thanks, Samantha, for being such a trooper! Looking forward to many more playdates when we're neighbors! I didn't get any shots of them both looking at the camera but such is life with 2 year olds!

Linda

Thankful

Just wanted to send a shout out to my family and my friends for their unconditional love and support. Thanks for being my sounding board. Thanks for walking along beside me through this journey, this beautiful joy of raising Lila. While she is similar to "typically developing" kids in some ways, she is different in many ways. After being a single parent for so many years, this is all new to me. It is the hardest job I've ever had. It is the best job I've ever had.

I'm so thankful for all of you.


Linda

Two more pics

More- new post because I don't know what I'm doing!

Lila loves to dance!

Lila's favorite thing to do- read!

Bath time!

She moved- but I love her eyes in this shot!

Some random pictures

Lila's first day of school!

Go Lila Go!

Tonight Lila stood up by herself in the middle of the living room, took her daddy's hand with ONE of her hands while taking 7 steps, and completely let go when moving from the couch to the coffee table. YAY! She's getting closer and closer. (It's just so hard to be patient when most of the kids she's around all of the time are walking.)

Waiting for the physical therapist

We went to physical therapy today and Lila wasn't happy. I guess she just wasn't in the mood. In spite of her resistance, her PT (Carla) was able to work with her and reported that even though she hasn't had therapy for almost a month due to the holidays and illness, she's moving along quite nicely. : )

Go baby girl!

Private/School Therapists

To my blogging friends/fellow parents of children with different abilities I would like to pose a question:

Should I be getting regular feedback from the school therapists? I have received no feedback at all since the beginning of school. The teacher sends notes home every once in a while mentioning therapies but I have had no direct contact. I'm so accustomed to private therapies where I am right there the entire time asking questions and taking notes. Do I need to request feedback/info?

Sharing the tiara

Lila's been the only girl in her preschool class since the beginning of the school year and her teachers call her the princess. On Monday, a new girl arrived. Her name is Riley and she is adorable. I am so excited that Lila finally has another girl to play with! I'll post a picture tomorrow if it's okay with Riley's mom. Two princesses. YAY!

In other news, Lila is getting closer and closer to walking. She'll stand up in her crib and let go- then she starts clapping because she's so pleased with herself- loses her balance and falls down. It's pretty cute. In the last few weeks she has really taken an interest in standing up and walking with us. In the past when we have tried to get her to walk she would just fall to her knees and crawl away. As Justin told us they say in Africa, "slowly by slowly."

The Sympathetic Smile

Last Sunday I went to a Southern Living party. The hostess works with my husband and since she was nice enough to invite me, I thought I'd be nice and go. Most of the people at the party either work with my husband or their husbands work with mine. I'm not close friends with any of them and it was a bit awkward at first. Luckily the hostess is a huge Giants fan so she had the game on. Nice icebreaker. A woman that I know fairly well came over to say hi.

Acquaintance: How's Lila?
Me: Lila's doing really well, she loves school, she has a great teacher, etc.
Acquaintance: How old is she now?
Me: She turned 2 in September.
Acquaintance: Is she walking yet?
Me: Not yet, but she's getting really close!
Acquaintance:

That's right, nothing. Just a sympathetic smile accompanied by a head nod. Then she does the old oh- I think I know that person across the room- let me go say hi to her, it was good talking to you routine.

A few things come to mind. Do not feel sorry for me or act as if I am in some kind of denial about my child. Lila is doing very well, especially when you consider the fact that it was a very real possibility that she wouldn't even live. And I am not in denial. Some people are shocked that I can be so positive about life when I have a child with Down Syndrome. Try being negative around Lila. She's full of joy and it's contagious. Even when she's ferociously stubborn, which is quite often, it's hard to be upset with her.

I am a person outside of being the mother of a child with DS. This lady and I used to talk about a bunch of different things. Now she acts as if my child with DS has taken over my life somehow. When I was pregnant with Lila- after I found out that she has DS- people started avoiding me. I would see them in the grocery store and they would duck into an aisle to avoid talking to me. I can see that people have limited understanding about DS and it might make them slightly uncomfortable to talk about it, but it's just odd when people that you knew fairly well, and were on friendly terms with, stop talking to you.

Okay, I'm done venting.

The Church Adventure

Nick and I sit in the back at church with Lila. She's usually pretty good as long as we have snacks. Lately, though, she wants to sing. Not just when everyone else is singing, she wants to sing the entire time. When she's not singing, she's humming. We try to shush her and she just looks at us, saying "hum" and signing "please". She wants us to join her.

Lila thinks she's so grown up. She always wants to do whatever we're doing. Over the Christmas holidays we were traveling from NY to Connecticut to visit some friends. Lila was in the back seat with her daddy and she insisted on holding the atlas.

Rainy Day Ramblings

I've been working on my New Year's cards since I woke up this morning. I think I'm about finished with them. I'm kindof bummed because when I created the card on Snapfish I did everything that I could with the picture but Lila still has red-eye. Oh, well, it's better than not sending a picture at all. I wanted to have a recent family taken during the short time that we were all together but that didn't work out. On Thursday, the night that we celebrated Justin's 21st birthday, we didn't eat the cake until 11 pm. (We had to eat it that night because he was leaving for school the next morning.) Lila was sick; she had horrible diarrhea all day long. We went through 5 outfits that day. We were just getting ready to have appetizers when she had another blowout. The worst one of the day. Poor little thing- I wrapped her up in a plastic bag and carried her upstairs to the bathtub. Her little butt was so red we decided to give her an Aveeno bath. Tif and I bathed her, Justin hung out in the bathroom with us, and Nick put the salmon on the grill because it was getting late. That's when we noticed her stomach- it was distended and hard. I called my mom, then called our pediatrician. They both said to take her to the emergency room. We ate very quickly and were getting ready to leave for the hospital when Tiffani suggested that we look at her stomach one more time before we left. Her stomach had gone down considerably and was no longer hard. I called the pediatrician back and he said that it wasn't necessary to take her in. She was probably having an allergic reaction to the antibiotic that she was on and since she hadn't taken it for a few hours the effects were going away. I believe that he was right, but I also know that my entire family was praying for her and in a matter of 10 minutes things changed drastically. We said a prayer for Lila and put her to bed. The rest of the evening was nice- even though it was so late- we sat at the kitchen table eating ice cream cake and listening to Justin's stories from Africa.

New to this

So, I've been thinking about doing this for a while. I used to feel as if I had nothing to share with people- my older kids are so OLD, things must be very different now. Lila is so young, and our journey with Down Syndrome has been so short, I should be quiet and just learn from others. In reading other people's blogs, I know that some of the most simple information has been helpful to me. Last but not least, I will be blogging for therapeutic reasons. For me.