Saturday, May 29, 2010

Saturday Morning Smiles

Dear Lily,

Saturdays are my favorite days...they always have been ever since I was a little girl. I loved sleeping in, and then waking up and knowing I had no school and Saturday morning cartoons to look forward to (back when they were decent- Tom and Jerry, Scooby Doo, Mighty Mouse...).

Saturdays these days are just as nice..no homeschooling, sleeping in, and Saturday morning cartoons...only now they're live!! We've never had a tv since we've been married- who needs one, with all the entertainment going on around here!

Your smiles have us all captivated- and you aren't stingy with them either! Every one of us has declared that OUR tricks are the ones that get you to smile every time.

Josiah has his- he hangs his mouth wide open and says in a high-pitched sing-songy voice "HIIII-IIIII!!" and instantly your face lights up...like a hundred volts lights up...


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Then Kenzie tries to out-do her brother.. she has a million nick-names for you...and says them all in her I'm-your favorite-oldest-sibling-and-we-all-know-it voice..."Lils-a-ROOOOO-sa!! Sissy LOOOOVES YOU!! LILYbird!! Smile for your Sissy!!!!"

And grins and giggles ensue...:)


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So Noah gets in on the action and uses the tickle strategy to win your grin..
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And then Caleb finishes this episode of Saturday Morning Smiles with Sissy by using his own personal strategy...and it works like a charm...
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What a way to start a day!!

Love always,

Mama oxox

Friday, May 28, 2010

Blessed

Dearest Lily,

Your oldest sister has a blog she started for you called "From My Heart to Yours". Tonight she wrote about your birth, and it was so beautifully written, it made Mama cry. I am so blessed, blessed beyond belief to have 3 wonderful daughters and 7 fabulous sons...and 3 babies waiting for us in Heaven. Thank You, Lord for my amazing family!!

Loving you even more tonight,

Mama oxox

Pint-sized princess pucker

Dearest Lily,

You are doing the cutest new thing...you smack your lips like you're giving a kiss! You are so proud of your new little trick, too.


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You are getting cuter every day!!

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Love always,

Mama oxox

Wednesday, May 26, 2010

Therapy

Dearest Lily,

Today was a day of unexpected joy! Every day Mama does "therapy" with you. Every few weeks Karen, your therapist, comes to play with you and teach us new things to do with you. It is all geared towards helping you advance beyond what you would normally do..because that is what early intervention is all about.

Here's how it works.

Babies with Down syndrome typically develop more slowly than normal babies. They generally reach milestones much later...things like lifting their head at a 90 degree angle, sitting or standing alone, crawling, self-feeding etc. Of course there is a broad spectrum of when each baby with Downs will normally reach milestones, as with any baby. Studies in the last few decades have shown that helping babies with DS reach those milestones sooner-more in line with when normal babies reach them- helps them developmentally throughout their life.

Babies with DS used to be placed in institutions. Disgusting, but true. And it wasn't that long ago, as recently as the 1960's. So many died from lack of love- the mortality rate was unbelievable for these babies. Those who made it to the teen years had little hope of ever reaching any kind of potential, because there was nobody to teach them or help them or love them. It was a vicious cycle. Because there was no "intervention", babies and children and adults remained uneducated, did not develop, thus perpetuating the idea that people with Down syndrome needed to be institutionalized..I remember growing up hearing the term "Mongoloid Idiot." (Mongoloid refererring to Mongolia, or people of East Asian descent. ..because most babies with DS have upward slanted, or Asian-looking eyes).

Eventually parents started being...parents...and taking their babies home from the hospital, ignoring the recommendations of their doctors, and raising their children themselves. These parents decided to just love their babies, even if they didn't realize that they needed more than love. Society began to accept the these children, and slowly things started turning.

When Grammi was a teacher for the "mentally handicapped", mainstreaming children with special needs was just becoming a big issue. What people began to see was that isolating children in a classroom with other disabled children wasn't working...there was nothing to stimulate these children, no "normal" children to influence and motivate them. When schools started allowing children with special needs into the "normal" classrooms, the result was incredible. Suddenly these "Mongoloid Idiots" were showing amazing progress, and people started realizing the value of integration.

I read this on Wikipedia..

Early childhood intervention came about as a natural progression from special education for children with disabilities. Research during the 1960s and 1970s showed that the earlier children received special education, the better their outcomes. Research also showed that families who were supported earlier were more empowered to advocate for their child later on (Guralnik, 1997). Many early childhood intervention support services began as research units in universities (for example, Syracuse University in the United States and Macquarie University in Australia) while others were developed out of organizations helping older children. In the 1990s, the many States in the US put into place a program where the child's pediatrician can recommend a child for early childhood intervention screening. These services are usually provided free of charge through the local school district.

If a child experiences a developmental delay, this can compound over time. The principle of early intervention is to provide appropriate therapies for children with disabilities, to minimize these delays and maximize their chances of reaching normal milestones in development. Early intervention begins from birth or first diagnosis, and continues until age three. It involves specialized education and therapy services for the child, as well as support for the whole family through information, advocacy, and emotional support.

During our last therapy session with Karen, I asked her why Early Intervention works- in other words, why we don't just let babies with disabilities reach milestones in their "own timing". What she said made so much sense.

Basically babies have a small window of time when their brains are forming- they are like giant sponges, absorbing every bit of information and processing it...this window of time is crucial to further development, and it is between birth and three years of age. During this time, things are taking place in the brain- neurons are being fired off, synapses formed- that will effect their cognitive development for the rest of their lives. Later on, as they grow, things "harden" and it isn't (as the old saying goes) always easy to teach an old dog new tricks.

We are focusing on getting as much information in as we can during that window of time, to "teach your brain", so that when you are 4 and 5, you are not still learning how to walk- you are ready to learn new information, because your brain is still forming (although not at the accelerated rate of birth to 3).

Soooo...what all that means is it matters A LOT what we do with you every day. We are always finding new ways to stimulate you- whether it's singing songs to you, tickling you, teaching you to roll, to grasp, to lift your head, giving you "tummy time", rolling a "nuk" toothbrush in your mouth and on your gums to trigger nerves, talking to you, playing with you- it's all therapy, it's all geared towards helping you to achieve ALL you can.


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One of the things we are doing with you is playing on "the noodle". A normal baby will lift her head without help, and eventually be able to do it without being wobbly. You have a hard time with this, even though you are 4 months old, because of low muscle tone (common with Downs.) SO Karen brought us over a noodle- an orange foam thingy usually used in the pool to help kids float. We place your upper chest on the noodle, and try to get your attention, so that you will raise your head up and hold it there. This strengthens your neck muscles, and eventually will help you to be able to move towards crawling. You usually have a hard time lifiting your head up for a few seconds off the noodle...

BUT TODAY....was a great day!!! You arched that neck and lifted up that beautiful little bald head LIKE A PRO to the cheers of all your brothers and sister and Daddy and Mama. And we were SOOOO proud, you would have thought you just ran the Boston Marathon!!! Mama caught a little of it on video...



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You worked so hard, you wore yourself out:) Daddy was so proud of his little Lilybird...




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You took a looooong nappy after your little workout..

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We are SOOOO very proud of you, Lily Anne. I had no idea how thrilling and exciting and wonderful it could be to see a baby lift her head off a noodle - I'm telling you, it's better than Disneyland. :) I can't wait to see what the future holds!

All my love,

Mama oxox

Thursday, May 13, 2010

Sunday, May 9, 2010

Your Birth Story

Dearest Lily,

You're almost 4 months old now..I never thought I could love you more than when I was pregnant with you, but every day since your birth my love for you has grown even stronger. It feels like you've always been a part of our lives.

I've wanted so many times to write about the day you were born..There's a letter to you about the morning of your birth, but I never finished the story. The moments following your arrival were so busy- and that whole first week in the NICU at Doernbechers was exhausting. Every night I wanted to write about what was happening that day, so I didn't forget about the whole experience.

There have been opportunities since then to sit down and put into words what happened that day...the day that changed our lives forever. But honestly, I haven't been ready to go there emotionally until now.

The morning of your birth was 3 weeks to the day before your actual due date. I couldn't believe I was in labor- Grammi and Aunt Hopie had arrived just the night before, to surprise me at your shower. When I woke up at 5 in the morning with strong contractions, I knew this was real labor. It felt like all my other labors- like there was this cool energy in the air:) But really it was the grace of God, just this supernatural "help", because God knows I'm a big baby, and I need a whole lotta help when it comes to anything to do with a)pain b)needles and c) blood.

Seriously, Lily, your Mama is the world's biggest baby when it comes to all three of those things. Ask any of your siblings some day. I feel faint if I stab my finger with a knife while slicing carrots and I see blood. I have fainted having my blood taken, and I have been known to scream at a doctor about to inject antibiotics into my hip "I DON'T LIKE YOU!!" . When I was 24.

The fact that I actually love labor and delivery is nothing short of a miracle of God.

The morning of your birth was no different. I already wrote about waking up at 4 in the morning in full-blown labor in another letter. So I'll pick the story up from when we arrived at the hospital..

Here we go..

That day is still so fresh in my mind...I remember the sweet nurse-Rima- coming into the birthing room to check me and get us situated She was Palestinian, and her head was covered in some sort of cloth. She had the biggest smile, and the most beautiful accent. I liked her immediately, and was I glad I had a nurse with a sense of humor.

She checked me and said I was dilated to 5...and later when the midwife, Claire, came in, she said I was fluctuating between 5 and 8. Lots of babies makes for a stretchy Mama:)

Everyone started arriving, and the room was getting quite full. Jason and Naomi, Josiah and Mackenzie, Denise and Danielle, Grammi and Aunt Hopie, and Kelly all came in with big grins on their faces. Daddy and I were so happy everyone could be there. The hospital ban on more than 2 visitors (because of H1N1) had just been lifted 5 days before.

My labor tape was playing in the background..I've used the same worship tape in every labor except Jason's- it's called I Exalt Thee, and just hearing that tape puts me back in those birthing rooms; the music literally transports me instantly in my mind to the births of my children.

Although I was so excited and happy, I could not make myself relax. It wasn't that I was in pain- God helps me so much in labor that I mostly just feel pressure with each contraction, but very little pain. But for some reason I could not stop shaking. Rima and Daddy tried to get me to calm down by reassuring me that everything was going smoothly....but those dumb legs of mine would not listen.

Remember when I had my ultrasound and learned that there were some markers for a chromosomal problem, and also a possible heart condition? My legs kept shaking just like then, and my heart was racing- even though I felt calm in my mind- my body had a way of exposing the stress beneath the surface.

I prayed, I took deep slow breaths, I prayed, I hugged Daddy, I prayed...but I could not stop shaking.

Because I knew...deep down, I knew that I would be seeing you face to face, and all the months of waiting and wondering about who you were, they were coming to a close. This was the moment I had been lying awake at night anticipating. And although I didn't want to admit I was afraid- have I told you I don't like admitting weakness, Lily?- well, my body wanted everybody to know. I hate not being in control- I hate that feeling of panic that washes over me in waves.

So I asked the midwife what she thought about getting an epidural..to help me calm down..She said if I did, they would break my water, and I'd probably have you twenty minutes later. That did it for me- I just wanted to finally have you in my arms, and have all the waiting over with.

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It took a little bit for the epidural to kick in. Even after I was numb I was still shaking. Rima took my hands in hers and looked me in the eyes and said "We can't do this for you- you're going to have to take control yourself." Claire came over and sat on the bed and asked me how I was feeling. I started crying and said I was just upset about being afraid and I was tired..emotionally drained. Claire was so sweet- she held my hands and said "This has been a long pregnancy for you, hasn't it?" I nodded and kept crying, but it was a relief to admit-I'm not all that strong.

Lily, I'm the woman who loves pregnancy, I begged your Daddy in every previous labor to please, please let me have just one more baby. I live for having babies, I love every part of pregnancy, I love labor and delivery, I get HIGH in labor and delivery for crying out loud.

But I was done. Done with the roller coaster ride this pregnancy had taken me on. I just wanted the moment of truth to come, and to move on with whatever the future held for us.

Daddy prayed with me again- Denise came over and prayed as well..and pretty soon I started to calm down. In fact I felt a tangible peace come over me- like a warm blanket of peace, just enveloping me and letting me know everything was going to be alright.

I'm sure the medicine had something to do with things...but I do believe God put His arms around me, and carried me through the hours to follow. There's no other way to explain how I felt. It's one simple word, really...

Grace.

I heard it preached long ago, that the grace of God is not always something you can feel until you are going through something. So many times we try to anticipate- how could I ever go through this scenario or that situation. But as Christians, we can have that confidence, that although we don't know how the grace of God can be so present, so tangible, in our moments of crisis- it IS. It is not something we conjure up ourselves, it is not simply "mind over matter"- it is not anything we DO ourselves. Grace is God Himself reaching down and carrying us through, when we don't have the strength to get through something ourselves.

Once I started experiencing that grace, I was so ready to meet you, Lily. I wanted to hug everyone in that room and tell them how much I loved them. One by one, all of my dear, sweet, wonderful loved ones hugged me, while Danielle snapped pictures, and Kelly video-taped.
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Right after we took pictures, I felt alot of pressure. Claire checked me and said "Let's have a baby!" She had already coached Kenzie on what she needed to do- we had planned months before that your sister would deliver you. Rima helped Kenz get her scrubs on. She looked radiant and so, so excited.

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Jason and Josiah stood at the head of my bed..Daddy and Rima were on each side, and everyone else gathered around. I could hear my music playing in the background, and I just felt incredible adrenaline...every time I looked at Kenzie she had the biggest smile on her face, but her continual gum smacking told me she was nervous too.

Just a few pushes, and I remember someone saying you had a little hair..one more push, and you were out..Suddenly the room was filled with cheers and laughter and I heard Daddy's voice, love-filled, proclaiming happily "She's looking all around! Oh, her eyes are wide open!!" Kenzie was holding you, grinning, and I couldn't stop laughing and crying at the same time. I couldn't see you, but the laughter and voices of everyone in that room just oozed with joy, and Daddy looked so happy, I knew you were beautiful.

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I had a blanket draped over my legs for privacy, and as Claire took you from Kenzie, I tried to see you over the blanket..she lowered you onto the bed and still I couldn't see you, but Daddy kept saying how he'd never seen our babies look all around like that, and how cute you were. I just wanted to hold you and look at you!

Claire said you were breathing, but she wanted to move you over to the warmer where the pediatrician and respiratory techs could look you over, because you weren't crying, As soon as she lifted you up to move you, you let out a cry, and everyone laughed.

She held you up for just one moment...

..and I knew. Lily, you were beautiful, you were so sweet and tiny...and Mama loved you instantly, and her heart broke at the same time. I saw your sweet little eyes, and your tiny arms, and I knew my baby girl had Down syndrome.
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And let me tell you, that no amount of preparation - had I known ahead of time- would have prepared me for the love that I felt instantly for you-- the protective, instinctive, all consuming Mommy-love that I felt in that moment.

I just wanted to hold you, and tell you that I loved you, and that it would be alright- Mommy loved you no matter what.

But Claire whisked you over to the warming table, where a team of hospital staff gathered quickly around you.
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And slowly the excitement started to die down, and as the doctor and nurses worked on you, I started to feel the mood was changing, Danielle was taking pictures of you at the warmer, and still I just wanted someone to hold you up, or move the table over to me, so I could see you, but they couldn't... because you were turning blue.

I kept asking "Is she alright?" and everyone kept reassuring me that you were...but I saw the looks on everyones faces, and I knew no one really knew. Mackenzie went over to the table and looked at you. I saw her whisper something to Danielle..and she looked so frightened, and like she was about to cry. Danielle brought her camera over and showed me the picture she had just taken of you, and I kept laughing and crying, because you looked so sweet and beautiful
, and through my tears I saw Mackenzie examining you closely.

Claire came over to my bed and knelt down..She took my hand, and I said "I know she has Down syndrome." Claire smiled- such a sweet, sad smile- and said "Yes. I knew when she came out.." as I nodded and smiled and cried and said "It's okay"..did I think I was comforting her? Because I was so happy and so sad all at the same time- and still my fierce, protective self did not want anyone feeling sorry for my fragile, beautiful baby girl.

Daddy was watching everything they were doing to you- listening to your heart, holding oxygen to your face to keep you pink..Mackenzie came over to my bed..and smiled..and her face broke into the saddest look..and I said "It's going to be okay" , because I knew she knew. And she collapsed on my chest and started sobbing.

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My sweet, brave daughter, she knew from the moment she delivered you, but she's just like her Mama, she smiled and held it together...until she couldn't. I've asked her what she felt in those moments, and she says it was mostly shock. Because all along she never wanted to believe you might have Downs. She says she pushed that little thought to a corner of her mind and wouldn't look at it.

So I held her and stroked her hair, and talked to her through her sobs, and tried to fit in all the words I knew, to take away that shock and grief, even though really, only time can heal some pain.

I remember thinking- I can't cry, I have to be strong because my babies need me, my grown-up babies, I'm still their Mama, and I don't want them to hurt more by seeing me cry. And I wanted everything to stay happy- I didn't want who you were to be a sad thing to anyone.

And in the background I could hear Josiah crying..and I never want to hear those cries again. It's not fair to hear your almost 20 year old son sobbing, to know that you just can't fix it all. It's not something I would wish on anyone.

Then the pediatrician said they needed to move you to the NICU ..more words I didn't want to hear..but they would let me hold you for a few minutes. And when they placed you in my arms, every single bit of pain and sorrow and grief vanished instantly-
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Because when I held you I felt exactly as I did when I first held all your brothers and sisters- that I would give my life for you if I had to. Love, pure love, and overwhelming gratefulness is what I felt. You were here safely, you were alive and beautiful, and perfect, and you were my Lily.
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It's late now, Lily..almost two in the morning, our very first Mother's Day together. I have more to write about the rest of that day, but it will have to wait for now.
If anyone would have told me a year ago, in the first weeks of my pregnancy, that I would have a baby with special needs...I don't know that I could have handled it.
But that's what the grace of God is all about- His grace is more than sufficient in our weakness. He is able to take us through things we never thought we could make it through and still be okay.
More than okay. Because life with you just keeps getting sweeter and sweeter, dearest Lily. You are Mama's best gift, next to salvation, and I will never stop thanking God for giving me YOU, my precious, wonderful, perfect Lily.

Love always,

Mama oxox


Saturday, May 8, 2010

Just a thought..

Dear Lily,

I received an email today with a photo of a sleeping baby..and I could not stop staring at her fingers. Because they seemed so long. And that has been happening lately, every time I see a baby's fingers..they seem incredibly long. Your fingers are so so tiny.. when you were born, if there was anything that stood out to me as being "different" about you, it was your small fragile hands.

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But you know what is funny? Now they seem totally normal to me...and every other baby's long, tapered fingers seem almost too long. Isn't that wild?




Just thinking about our persectives on life, lately. How we define perfect.



"She has the perfect nose". "He has perfect hair." "That child has the perfect little face."
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But really, our physical differences are what make us all individuals, all uniquely created by God, and it would be such a boring world if we all looked exactly the same, or even totally similar. I mean, I would be really sad if every one of my children looked like a complete duplicate of the previous sibling!
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So really, perfect is such an ambiguous term, you know?



I think it's like the old saying- Beauty is in the eye of the beholder.Photobucket




Your sweet, soft, little translucent hands are perfect to me, baby girl.

Loving all the rest of perfect little you,



Mama oxox

Wednesday, May 5, 2010

Sleeping Beauty

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Dearest Lily,

I took this photo of you with my phone..you had been sleeping on my lap, and you woke up and looked at me with the cutest sleepy look. I love how you snuggle while you sleep- you just melt right into us. Your favorite way to snooze is on someone..either on our chests or laps or nestled in our arms. You sleep right next to me each night- curled up against me and squeezing your jammies or a blanket or your blankie toys with your little chubby fingers. If I wake up before you, it's not long before you're stirring and wiggling around..you want someone sleeping next to you:)

You're now 8 pounds 3 ounces- can't believe you finally broke 8 pounds! Now you can graduate from some of those newborn outfits into the 0-3 months ones. I have plastic tubs full of clothes waiting for you. Sometimes it feels hard to believe you will fit into all of them some day. I never knew babies with Down syndrome grew more slowly.

Other things I've learned ...

-not all babies with Downs have lots of health problems. Aside from getting RSV (which would be scary for any baby), you have been extremely healthy. I've been following quite a few blogs about babies with DS and have read the same thing over and over. Just because certain medical issues have been linked to your diagnosis doesn't mean we should just expect you to deal with those. In fact, we're praying and believing God for the opposite!

-Having Down syndrome doesn't mean you don't have a multi-faceted personality, even as a baby. You have a variety of moods, and you change them frequently throughout the day, just as any other baby does. You can pull a sad face that breaks our hearts, and your mad look is pretty darn ferocious.

-Down syndrome doesn't prevent you from fully engaging in "conversations" with us- you literally draw us in with those gorgeous blue eyes, and you will coo back and forth for a half an hour or more with whoever is playing with you. You are so responsive- you love to laugh in response to our laughs- especially Josiah's. Mackenzie can get you to smile every time, and Mama and Daddy are pretty good at it too. But those "ahhhgooo's"- if I had a dollar for every time your sweet voice responds to ours- I'd be a rich Mama.

-Having Downs doesn't keep you from being mobile..you have been rolling over since birth.. and watching your hourly kick-boxing sessions makes me tired! You adore your bouncy seat- if you kick the hanging monkey and birdie it activates an orchestra of songs and whistles and chirps. Our family room sounds like a virtual rain forest, cuz you know how to land those size zero footsies just right!! It's so sweet to watch your eyes and face crease into a huge grin, like Hey, check out what I can do. Karate Kid aint got nuthin on this baby girl!

-I always thought it was Downs Syndrome. After reading a million books and websites and hand-outs I found out it is Down syndrome..no s at the end of Down, because it's the name of ...

Dr. Langdon Down, who in 1866 first described the syndrome as a disorder. Although Doctor Down made some important observations about Down syndrome, he did not correctly identify what causes the disorder. It wasn't until 1959 that scientists discovered the genetic origin of Down syndrome.
It's also Down syndrome, with a little s.

Here are a lot of other things I've learned about Down syndrome. These facts are taken from Jennifer Graf Groneberg's site- she wrote Road Map To Holland, an awesome book I read. She has emailed me several times in response to questions I had after reading about her son, Avery. I loved her book, and I love our budding friendship even more.

Down syndrome is the most common chromosomal anomaly, occurring once in every 733 births.

During normal cell development, the original cell begins to grow by dividing and duplicating itself. Sometimes, for reasons that are not yet understood, the original cell does not divide evenly. When the extra genetic material is located at the 21st chromosome, it is called trisomy-21, which is also known as Down syndrome, after John Landgon Down, an English physician who first described the condition in 1866.

Although babies with Down syndrome have extra genetic material at the number 21 chromosome, all of their other chromosomes are normal. In fact, the material in the number 21 chromosome is normal, too—there is just more of it.

There is great diversity regarding intelligence, learning styles, physical ability, creativity and personality, because of the influence of the other 46 chromosomes in each baby’s genetic blueprint.

There are 3 types of Down syndrome, and (Lily), yours is the most common, which comprises 95% of the diagnoses. It is called nondisjunction trisomy-21, which means chromosome 21 did not disjoin from itself and divide evenly. This happens at the beginning of cell division and the extra genetic material is copied in each of his cells.

There is another form called translocation trisomy-21, where part of the number 21 chromosome breaks off and attaches itself elsewhere, sometimes to the number 14 chromosome, or sometimes to the other number 21 chromosome.

The third type of Down syndrome is a rare form called mosaicism, in which the trisomy occurs a bit later in cell division, so only some of the cells contain and perpetuate it.

The current, preferred terminology is Down syndrome. A child is a child first, so instead of a “Down’s baby,” you would say “a baby with Down syndrome.” This phrasing is called People First language and applies to anyone with a learning difference or a physical difference.

People with Down syndrome are not severely retarded, but fall into the mild to moderate range.

People with Down syndrome are not always happy (they have a full range of feelings, like everyone else).

Down syndrome is not fatal, and 80% of adults with Down syndrome live to age 55 or beyond.

Down syndrome is part of more than 350,000 families in the United States. It occurs in all races, and at all socio-economic levels.

Another interesting fact I learned is that..

It has been known for some time that the incidence of Down syndrome increases with advancing maternal age. However, 80% of children with Down syndrome are born to women under 35 years of age.

Well, I just realized what time it is, and we have church tonight. So... more tomorrow on things I've learned since having you, dearest Lilybird.

Loving this new learning experience, and loving YOU,

Mama oxox