DSAM Day 21: Skipping Happily Along……in Mud

Every year, one of the biggest fundraisers for Down syndrome awareness is held- The Buddy Walk.

Teams are formed, money is raised and everyone comes to together to walk around a small track- all in the name of the one they love and support, who has Down syndrome. Before Lily I had never heard of the Buddy Walk. Now it is an event I both look forward to and dread.



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Our team, The Lily Lu Whos is filled with some of the most amazing and inspiring people I know. Ranging from close family to friends both old and new, a whole bunch of people drop everything for one afternoon and focus all of their energy and attention on one very special little girl. As the mother of that little girl, it makes my heart soar that so many have so much love for her.

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At this years’ Buddy Walk,  I was an organized disaster but managed to get us there with our flag flying high (or trying to sail away when the wind hit it!) As I took a moment to soak up how many people showed up for us and glanced at each of their smiling faces, I felt so very blessed…..and so very sad.

For me, Buddy Walk is also a glaring reminder that Lily has a disablilty. A disability that will alter the course of her life in a less than glamerous way.  Getting lost in your child’s every day triumphs and discoveries makes for placing the uncertain future and struggles far from your mind somewhat easy. As Lily edges further and further away from being a baby, she also grows miles and miles behind her peers. Her delays are becoming more apparant and although she will catch up on her motor skills, I know that this is just the beginning.

When you first learn that your child has Down syndrome, you hear the words, “high functioning” and “low functioning”. I understand this to be in reference to intelligence. Doctors and genetists cannot predict whether or not your child will be high or low functioning. When Lily was an infant I would look into her eyes and see a sparkling soul filled with a wisdom I knew nothing of but was certain I could learn. As I gaze into her eyes now, I see intelligence. I see cleverness. I see a connection with the world around her. But do I see high or low functioning? I don’t know. My own eagerness to learn has begun to be pocketed with worry.

In searching for clarity in my muddled thoughts, I realize, I am afraid. I am afraid of low functioning. What will that be like? I am afraid of high functioning. What will that mean? I know that regardless of high and low cognitive abilities, school will be hard (at least for me). Things I was once feeling so secure about I can no longer grasp.

Buddy Walk for me, is a little like skipping happily along…in mud.

There is so much joy and celebration with family and friends, food and fun but there is also a heavy reality waiting in the near future.

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Today my daughter walked through the finish line for the very first time and received her medal. As I helped her across, tears flooded my eyes. She was so proud of herself. She walked with pride and joy and although she still needed my help to do it, she beamed with accomplishment. Her team cheering her on, she walked until her legs grew tired.

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As we all took turns scooping her up and lavishing her with affection, I took a look around. There were cheerleaders cheering , Ronald McDonald handing out medals, hundreds of people cheering and clapping and exclaiming good job! I couldn’t help but wonder what happens when Lily gets too old for all of this exaggerated fanfare?

Alas, I cannot skip to the end of this book to search for a reassuring sentence that will alleviate my own anxiety … nor would I want to so carelessly rush through the chapters of Lily’s book. We are on a journey together and although there are more and more times I find myself afraid, I never want to miss a moment.

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DSAM Day 20: Don’t Eat That! It Might be Poison!

Lily used to be a wonderful eater…until she became a toddler and now she reacts like we are poisoning her!

When Lily was 3 months old, we learned that because of her low tone (on the inside), she was aspirating my breast milk into her lungs. She also was diagnosed with acid reflux. We had to add a thickening agent to her milk (which meant I could no longer breast feed but had to exclusively pump) 😦 and she began medication to treat the reflux. Both of these issues would begin to resolve as she got older, stronger and bigger.

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At 6 months old she had her very first bite of food- PEAS! After that bite, a whole new world had opened up for her and she eagerly stepped into it. She enjoyed all flavors of food….

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….with the exception of squash- not a fan of squash.

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With her first birthday came the extinction of bottles and baby food. My big girl was now drinking whole milk from a straw cup and eating table foods along with us. How exciting! She was really turning into a little girl now.

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Still not a fan of squash.

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At about 18 months, she learned she could spit out her food. Even more fun, she learned if she spit it out on the floor then Molly would eat it. Much to her amusement and my dismay, a new game was invented! She also began to throw her sippy cups to the floor (spilling them- even the spill proof ones spill!)

Just when we our teachings of “set it down” were taking effect and the random flying of objects ceased- she decided that she was ready to be INDEPENDENT.

Now it is a HUGE cognitive development when toddlers begin throwing tantrums and want to do things their way. So as much I am thrilled that Lily is experiencing this, I want to run to the nearest island for a break!

Here is her progression with eating: First she refused all food the first, second and third time. This included yelling, turning her body around and even trying to run away (when she was not in her chair). Next she began sniffing and licking her food first (testing to make sure we aren’t trying to poison her)  Then she would only eat food placed exactly where she wanted it and had to feed herself.

So we introduced utensils. Now she had been introduced to a spoon and fork before but this time was different. This time she learned how to use them! She loves her fork! She has mastered the art of stabbing items with her fork and makes it to her mouth every time. Next came the spoon, she did amazing with the spoon- I was so proud of her!

Before my eyes my little girl just grew up a little more. I forsee many more food messes, meltdowns and hunger strikes in our immediate future but she is on the right path to feeding herself and my eyes rain with joy!

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Now the important Down Syndrome Awareness Month (DSAM) message for the day is this:

Lily is just like every other toddler! Lol. She strives to be independent, is demanding, yells when she gets frustrated, and makes huge messes when eating. Yes, its true she must work harder to eat due to the lower tone of the mouth muscles and sometimes gets lazy with chewing but she is more alike than different ❤

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It’s All My Fault

It’s all my fault.

1 in almost 700 babies born in the United States have Down syndrome, the most common chromososmal condition.

In 90% of all nondisjunction trisonmy 21 cases, the extra chromosome comes from the egg, not the sperm.

My egg = My fault

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As the age of the mother increases, so does the chance of having a baby born with Down syndrome.

I  delivered Lily 13 days before my 35th birthday.  It’s my fault- I was older.

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Many decide to terminate their pregnancy when their baby is prenatally diagnosed with Down syndrome.

Lily was born December 2, 2011 because I chose not to end her life. It’s my fault she exists.

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Because of Lily, many women, men and children have been affected in a surprising and beautiful way. She leaves an imprint of joy and fearlessness on everyone who sees her. She is amazing, brave and boundless fun. She is a gift, a blessing. She is love.

And it’s ALL MY FAULT!

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DSAM Day 18 – Just Keep Swimming

Down syndrome = Low tone.

I have spoken about this a few times now as it is ever present in everything we as people do. Some people with DS have more tone than others and there is all sorts of variations and degrees but they all have low tone.

In lieu of speaking about all the draw backs of low tone, I am going to share a benefit of having low tone- Swimming!

Anyone who has swam a lap recently, can attest to the intense work out it can be. Swimming works your whole body inside and out and really is a fabulous way to stay healthy and active. Swimming requires strength and flexibility and if you want to be really good at it, then having low tone will give you an edge!

Anyone can have low tone, it is not only a Down syndrome thing. Lily’s developmental pediatrician once told me that the reason a recent olympic swimmer was so good was because he has low tone.  I won’t bore you with the physiology of tone but instead move onto to Lily.

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I first introduced Lily to water (aside from baths) when she was 6 months old. I got her the cutest little swimsuit and hat, grabbed some friends for fun and support and ventured to a local pool. As soon as I greased her up with sunscreen, had an internal debate on whether or not to put sunscreen on her head (I chose the hat instead) and mentally prepared myself, I stuck her tiny little feet in the pool.

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To say she liked it would be a serious understatement. Her whole being lit up and from that moment she was hooked!

We went swimming every week that summer and each time she was braver and braver – she even went under! She had such a sense of calm and easily flowed with the water.

When this last summer rolled around, I was heavily pregnant with Oz but was still hell bent on getting my swim on with Lily. Our first swim of the season totally caught me off guard. I finally felt confident with my chosen attire and had everything packed. We hit the pool and immediately hit the water. I thought she would enjoy being held and swimming with me, maybe even learn to kick her feet. No. She wanted to swim – without me. She kept asking for down and trying to wrestle out of my arms! Since my belly was gigantic it was a very uncomfortable and miserable experience for me and for her. I wasn’t prepared for her to want such independence and show such confidence at the pool and didn’t think to buy her floaties or anything!

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After Oz was born, we went a few more times and really enjoyed ourselves- she learned to “jump in” the pool, kick her feet, blow bubbles, and of course drink the pool water (ew!). Unfortuantely, she had tubes placed in her ears back in March so going under was not an option, which she was upset about- she really wanted to swim like we did.

I know that Lily will always have to battle her body when it comes to physical activities. I take so much comfort in knowing that at least with swimming, she was practically born to do it! I hope she continues to love the pool and I look forward to spending the summers in the water!1146

Teething- a cruel necessity

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Teething has got to be one of the cruelest rites of passage for children to endure and they must go through it TWICE!

Children with Down syndrome can have missing teeth, extra teeth, oddly shaped teeth, out of order teeth and delayed teething. (That was a mouthful) 😉

Lily began teething when most babies do but didn’t get her first tooth until she was close to a year old. She got them out of order – her upper eye teeth were first and looked like fangs (she could’ve been the Twilight baby!) but she got quite a few in all at once.

You would never know this kid was teething while she cut her incisors, eyes, and even pre-molars! But when she began cutting her 2 yr molars and canines- oh boy! She now has 14 teeth and has 6 to go. These last teeth have been awful- creating high emotion, restlessness and even a hunger strike!

They say that as teeth begin to emerge they cut through the gum and go up and down a little before finally agreeing to stay out. Now that’s just plain mean!

All this work and guess what? They will just fall out and she will have to endure this all over again! What was the plan here? The only bright point I have to give her is that when she begins losing these hard earned teeth, a magic faerie will come and take these precious teeth and leave her some money…..:)

But with teeth come new things to discover- different foods, a smile that looks so much more grown up, brushing your teeth and of course, the dentist!

Lily’s first visit to the dentist was fun. Well playing on the pirate ship in the waiting room was fun, getting a goodie bag was fun, laying in the lap of the dentist- not so fun! The dentist counted her teeth and looked them over much to Lily’s dismay. We received a good report and were sent on our way.

Seeing the dentist may not be on Lily’s list of fun activities but brushing her teeth sure is! She brushes her own teeth in the morning and I brush her teeth at night. Any time anyone runs the bathroom sink, she races over and points to her teeth signaling she is needing to brush! I sure hope we can continue this enthusiasm!

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Beauty and the Beagle

There is scientific research that states petting an animal reduces blood pressure, anxiety and stress. In our house, having animals also teaches compassion, sharing, love, and friendship. The following is a little story about a girl and her dog.

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Since the day we found out we were pregnant with Lily, I have been training our beagle, Molly, to prepare for a baby in the house. Now, as a dog behavioralist, this was a no brainer for me – just as James and I had to prepare to have a baby, so did our animals! Molly is a wonderful, loyal dog but hadn’t had the opportunity to be around many babies. I wanted to set the stage for a beautiful relationship to build between my daughter and my dog. Any time there is an addition to the family, everyone goes through a transition time, including our animals. It was very important to me that Molly understood her position in our family pack would be the same and to make her feel secure with the changes.PicsArt_1333313588095

The day we finally got to bring our little girl home (she had an 11 day NICU stay) was so exciting! As we walked up the stairs to our little apartment, I handed Lily to James. I wanted to greet Molly with just me before I introduced her to Lily. I was met with an intense butt wiggle and tail wag and even a dog hug! After greeting Molly and calming her down, I brought my tiny daughter into Molly’s field of vision.

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Molly could not have cared less about Lily! Ha! Which was absolutely fine with me for right now. As Molly began to get used to this little person always being in my arms, next to me on the couch, rolling around on the floor, and making bizarre noises; she began to settle in to the routine and would lay by Lily and lick her hands and feet.

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Then Lily began to crawl. Oh boy were we ecstatic! And as much as we were happy, Molly was not. People forget how ‘scary’ babies are to dogs. They don’t know the rules of how to pet, where to pet, and bear hugs, erratic movements and abrupt tuggings are enough to make even the most mild mannered dog a little on edge. So with each new milstone Lily achieved, we took time to work with Molly  and get her comfortable being around Lily. Our house was filled with praise as they both learned how to be around one another.

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Now that Lily is almost 2, her and Molly are best friends. I really mean that. Lily looks for Molly, feeds Molly (much to my dismay), shares her toys with her, seeks out interaction in every way possible. Molly enjoys Lily too- she plays with her, licks her up and down (ew) and lays right by her watching over her. She is never far from Lily.

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Molly also gives Lily confidence. Lily is not walking yet and it has made her more shy and insecure around others suddenly. A very hard thing for me to see. However, when Molly is with her, she is more relaxed, more comfortable.

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Animals bring amazing gifts to humanity and I am witness to this every day. Molly is already bonding with Oz and I cannot wait until Lily can take Molly for her first walk.

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To Speak: to voice your emotion, concern, make a statement. To be able to ask for help, have a conversation with a friend or lover, to be able to tell a joke, to express how much you love someone.

Speech is very important to us. In fact, we rely on it so much as a society that when we have trouble understanding someone, we get frustrated, when it takes a minute for someone to reply to us, we get impatient and if someone has a lisp or other problem we tend to make fun.

One of the most distinguishing marks of DS (I think) is speech. We were told that Lily will be delayed in speech and that may or may not be able to speak clearly. People with DS tend to have flatter and broader tongues which in addition to having smaller mouths, can create problems with speaking. Since even learning to talk is a ‘tone’ thing, it is harder for Lily to coordinate her lips and tongue to make the right sounds.

When I first learned of the potential speech problems, I didn’t pay much attention. After all, Lily was only days old, what did she and I care about speech? Now that we are in toddlerhood, however, speech is very much on my mind and has become important for Lily too.

Lily’s first word was “dada”. I will remember that day forever and so will James. The three of us were playing on the floor when James, got up to leave. As he is walking away, we hear this tiny little voice exclaim “DADA!” James stopped dead in tracks and we both looked at her with excitement. She was so very proud of herself. And we were too!

Since that moment, Lily has expanded greatly on her speech and now has a variety of words and phrases. She babbles constantly and most of the time I know what she is trying to say. “Dada” has now evolved into “daddy”, and she says- Oz, what’s that?, Stop It, Cat, Dog, Step, Ready, can Hiss like a snake, Roar like a bear,  sign more, all done, brush teeth, come here and elephant and can understand just about everything I say.

That being said, I find myself more and more worried about her speech. I don’t often get a chance to hear other almost 2 year old’s speak but it seems that most have a much bigger vocabulary than Lily. (Before you scold me for comparing my daughter to others, let me say, we all do it, it’s natural and I am not judging my daughter just comparing.) I also find myself wondering about how she will sound. Will she be hard to understand? Will she get frustrated because people can’t understand her? How bad will it be? Will it always be that way?

Like with everything else DS related, we will not know these answers until we get there. That’s okay. I have learned to accept that there isn’t much I will know until we ‘get there’.  I do know this, I love hearing her communicate and have conversations with me and her toys- and I think she is amazing as she reads her books aloud to her brother, who also thinks she is amazing 🙂

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I Am….

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We are engagingly looking at a statue when I see her staring hard at my daughter. I look back at her and she quickly looks away.

He stares at me while I politely decline to sign the waiver for my daughter’s photograph to be used in an online publication. Other parents tilt their heads my direction.

They smile with sympathetic eyes while I am enjoying playing with my daughter.

I am crying while I am driving because the music on the radio will disguise the sound so my children don’t hear and get upset. I am not sure if I am sad, stressed, tired or frustrated but the tears don’t discriminate.

I am screaming for joy as I sweat through my shirt, walking in the sun for 20 minutes in a crouched position holding my daughters hands because she suddenly wants to practice walking.

I am on my knees begging God for strength and to be a better mother.

I am allowing myself to be vulnerable to complete strangers to hopefully gain a little insight as to how to better help my daughter.

I am constantly thinking, reading, analyzing and observing every thing. No task is mundane, all must be thoughtful.

I am on a first name basis with and can tell you all the good doctors in various specialities in town.

I am daringly hopeful when I hear the latest research discovery that may help my daughter.

I am awake in bed thanking God that He allows me to be this little girl’s mother, even though I may feel like I am not good enough.

I am a mother to a special needs child.

God didn’t make me more special or stronger than you and He definitely did not give me super powers. But He did give me a daughter and now a son that I will do anything for.

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Welcome to Oz

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When my daughter was 6 months old, we began planning for our second child. Because of how long it took to get pregnant before, we thought we should start early just in case. Turns out that the rumors are true- you are much more fertile the second time around- it only took 3 months to fall pregnant with baby #2!

I found out I was pregnant 5 days before we moved into our first house, we were so glad we chose to buy the 3 bedroom instead of the 2 bedroom! As James skipped out of town on business, I, once again, was left to move all of our stuff while pregnant. (I am not a fan of this trend and will have make sure to break it when baby #3 is on board).

They say no pregnancy is ever the same- not between you and your friends and not even between your first and your second. I found this to be true. My pregnancy with Lily was pretty easy physically but hard emotionally. This time proved the opposite.

Everything seemed to happen much sooner this time around, the fatigue, the sickness, various pains and even the baby bump! Although I entered into this pregnancy with much greater confidence than my last one, I still became petrified before each dr appointment. Will they find the heartbeat? Is the baby growing?

A truly miraculous thing occurs when you are busy chasing around a 1 year old, time passes by quickly.

Before I knew it, I was out of the first trimester and speeding head long into the second. When I first became pregnant, the burning question from every one was if we would do the testing for chromosomal disorders. As you remember, we didn’t with Lily. Since Lily has Down syndrome, our risk for having another child with DS automatically goes up to 1/100.

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This doesn’t make a lot of sense to me though. The type of Down syndrome that Lily has, is not hereditary. So why then are my odds automatically increased? Regardless, we chose to decline testing this time around too.

Our 20 week ultrasound was a huge marker for us. This is the day we not only find out the gender of our baby but if there is anything noticeably wrong. This was the ultrasound that changed our lives forever just a little over a year ago. And I had to brave it alone.

The first thing I did was inform the ultrasound tech that I have a daughter with DS and we had so many troublesome ultrasounds with her, that I am a PRO at reading the face of the tech. So please be upfront and honest with me, if you see anything wrong. She must have liked my candidness because she had no problem with what I said and was very explanatory during the entire ultrasound.

Including the part where she said, “Hmmmm hang on a minute.” and “He has a shadow at the base of his spine.”

You have to be kidding me. Whaaat??

I was then referred for a high definition ultrasound. Before I left my ultrasound, I spoke with my dr. he reassured me that he didn’t believe it was anything but wanted to be sure. Although I was inclined to believe him, I still traveled home with a heavy heart.

I revisited some similar thoughts I had from a year ago- only this time it was different. This time I knew that things were not always as they appeared and that through the fear of the unknown lies an incredible blessing.

That evening was not a depressing one, quite the opposite! I had the tech put the gender of our baby in an envelope so that James and I could learn about him/her together. So at dinner, we gave the envelope to Lily, to open.

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The anticipation was mounting as Lily tore open the envelope. Did we want a girl or a boy? A brother or a sister? I thought at first another little girl would be better because sisters close in age could be close and fun. I also thought that having a boy would be so exciting.

As the little piece of paper appeared from inside the envelope, James smiled big and said “BOY!”.

My heart soared with excitement. I was going to have a son! A little boy to fit in so perfectly with our daughter. It was at this moment I began to really bond with the little soul growing inside me. He had an identity. He was my baby boy!

The next week brought the high definition ultrasound. This time I was joined by James and Lily. James and I shared an all too familiar look of love, fear and faith as I laid on the table.
And suddenly there he was, my son. He waved and looked at us, his picture crystal clear. Despite the anticipation, my heart filled with love and warmth. Even Lily smiled at the monitor!

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The ultrasound tech spoke easily with us and as she referenced his spine, she said “I see nothing abnormal.” Since the picture was so clear, neither did I. Flooded with relief and gratitude, I finally felt enjoyment receiving an ultrasound.

At 27 weeks, I was wheeled to labor and delivery to get checked out as I was having contractions. I was nervous because I didn’t know I was in labor with Lily and her heart rate was plummeting with each contraction. Would it be the same with my son? Is he okay? I could feel him moving. After being hooked up to the monitors, they validated that I was in fact, having regular contractions but I was not in labor. More importantly, my son was just fine! I got to home just a couple hours later.

The rest of the pregnancy became filled with strong kicking, lots of weight gain 😦 and massive hip pain! Once I hit 36 weeks, I celebrated. I had now made it farther than i did with Lily! I may actually make it to full term!

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I began to get excited as I assumed I would go into labor any day now. I didn’t believe I could carry to term even though I wanted too. Soon my excitement faded as I entered into my 38th week. Now I began to understand why so many of my mommy friends would exclaim that they were done being pregnant!

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Just when I thought my belly couldn’t stretch any farther and my hips couldn’t handle the pain any longer, I woke up in labor.

Wednesday, July 3, 2013 I woke up a mother of one and a family of three and went to bed a mother of two and a family of four.

Labor still eludes me a little bit- my contractions are so different than what I thought they would be and I have learned twice now to follow my gut on whether or not I am in labor. I simply felt sick and crampy. I had my grandmother come over to help with Lily and James left work early to take me to the hospital.

I was scheduled to have a repeat c-section on Friday, July 5. I figured I was probably only in early labor and they would send me home to wait til Friday. I have always believed that everything happens for a reason, and here is yet another example: No one showed any record of my scheduled c-section. Somehow, although planned back in April, it never made it to their books. Let me just say here, that I found it very strange to “plan” my child’s birthday. This is something one is asked to do when having a schedued cesearan, I learned. After waiting a couple of hours for my dr, he appeared and said that since I am in labor, would I like to go ahead and have this baby tonight?

Um….yeah! Although I was only 39 weeks on the dot, I was so over being pregnant.  Since my son was doing fine and not in any distress, everything moved at a much calmer pace than with my daughter. I chose 6pm as a good time to deliver. This gave me a little over an hour to mentally and emotionally prepare to meet my little boy. Or so I thought….since Lily was an emergency, I didn’t notice all the prep work that was neededbefore surgery. I was moved to my room where the anastethiologist came and hung out with me. She was very sweet and comforting. My nurses came and went, placing my IVs, bringing in the baby’s stuff, shaving me (soooo uncomfortable and awkward!) and even bringing me a charger for my phone! Then it was time to go to the OR. But wait a minute, I hadn’t had time to prepare!

I thought that I wouldn’t have any anxiety this time around. After all I had been through this before and this time was so much calmer and relaxed. But surgery is surgery and I soon found myself shaking and wanting to run away. I told the anastsiologist that I was starting to panic. She handled my anxiety so well. After she administered my spinal and laid me down, I finally got to see the one face that would hold me together, James. And it was his face and the touch of his hand that prevented another anxiety attack when my blood pressure dropped and the meds made it difficult to breathe for a minute.

After a small eternity, the surgeon told the nurses to lower my drape and told me to peer over. I had every intention of looking at myself cut open (the biologist in me couldn’t resist the opportunity) but my thought was interupted by an abrupt cry. As I gazed over my drape, I laid eyes on my son. I am incapable of depicting my feelings in that moment. They were so much beyond joy and love. He was huge! And he had lots of brown hair! I wanted to reach out and grab him and hold him close. It was like seeing a piece of my heart manifested outside my body and wow! I mean wow!!

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Very shortly afterward, James brought him over to me and I got to touch him and kiss him. Since there was no rush to hurry him off, I soaked up the moment. Then James took him out the door to wait for me while I was being put back together. Finally after what felt like forever, I was wheeled into my room where my husband and son were waiting for me. I immediately put him to my breast and he nursed like a champ!

He was here. He made it. He was healthy and beautiful and he was mine!

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Roses are Red

Roses are Red

Roses are Red

Violets are Blue

Worry not mama

The world loves Lulu.

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“Every parent wants to know that their child will have friends and find love…. The truth is that regardless of how many chromosomes one has, you will get your heart broken and you will fall in love and you will have that love returned. I will forever stand beside her, supporting her and loving her through all the trials and tribulations life throws at us.”

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I wrote that a year ago. In this last year I have bore witness to many amazing things. None have been so powerful as watching how freely Lily expresses herself. She smiles with her whole body. When she is sad, the whole room weeps, when she is happy, she lifts every ones mood. And when she hugs you, you feel like the most special person in the world.

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Lily has friends. Correction, Lily has lots of friends. She has friends with disabilities and friends without. She helps care for babies (like her brother), she plays games with friends her age and is even welcomed by kids much older than her to join their activities.

Lily has friends. Lily is loved.

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Her road will be different and her future uncertain, but Lily IS loved.