DSAM Day 24: Becoming a Big Sister

November 2, 2012:

In the midst of closing on our very first home, moving out of my grandmothers’ home and getting used to a pre-toddler who can crawl everywhere…..I had lost track of my cycle and realized with a heart thumping moment that I was 2 days late..

2 days late equaled 4 weeks pregnant with baby #2! Lulu was gonna be a big sister!!

 Now, of course she had no idea what I was telling her but was laughing and smiling right along with me.

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As the first trimester set in, so did the fatigue and sickness. Lily seemed to enjoy the extra snuggle time she was getting as I began to cuddle up with her and take our daily naps together.

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The second trimester brought the baby bump and another oportunity to share the news with Lily. Little did Ozzy know, but at only 20 weeks gestational age, he was already teaching his big sis things. She learned “belly” by lifting up my shirt and playing with my obnoxious looking navel and patting my enormous tummy. At this time I began to use the word “brother”. And soon Lily was proudly pointing to, patting and even hugging my belly every time I asked her, “Where is your brother?”

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But as the weeks flew by I began to wonder, how do I prepare a 1 year old for a new sibling?

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Taking some advice from Lily’s various therapists, I bought Lily a baby doll. (This was a big deal to me because I am secretly a little afraid of baby dolls- let’s just say I have a little paranormal trauma history involving dolls I still need to work through!) After picking out a baby doll that was small enough for Lily to be able to carry and not too creepy looking, I presented Lily with her first baby. She LOVED it! For about a month….then she was over it and on to other activities. So I began to use the doll to represent having a baby in my arms while playing with Lily. I also had Lily practice waiting for things and even delayed my response to her in attempt to simulate what I guessed it would be like for her while I was changing Oz, nuring Oz, etc.

Towards the end of my third trimester, we were both sick of the belly. I began to be physically incapable of playing on the floor with Lily anymore, I was too big to cuddle with her on the couch, I was in a lot of pain and was very tired. The energy in the home was thick with anticpation and everyone felt it. Lily began acting out a little- she would get frustrated with me and sometimes prefer to play with daddy over me. Her emotions intensified and she began whining and fake crying followed also by real crying sometimes.

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The long awaited, blissful moment arrived and little Oz joined the world and our family. While waiting to meet my son, lying on the operating table, I had a terrifying thought- What if I have totally screwed over Lily by having another child?

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I know, I know, it was a little late, lol! But the truth was and is: Yes, yes I did screw her over a little bit. She will no longer reign as the end all be all in the house, she will now find herself having to share everything she knows and holds dear. Of course she will also now have a little brother to play with, confide in, gather support from, and love.

The night Oz was born, James and I decided to have Lily come up to the hospital to meet him right away. You see, when I left our home, Lily stayed behind with my grandmother (Gma)- I was in pain and hadn’t felt well all day so I know Lily was worried. Also, I had never spent even one night away from my little girl and was very nervous about how she would handle it. My mother, brother and step-father brought Lily up to the hospital.

I made sure that I wasn’t holding Oz when Lily first entered my recovery room. I knew I probably looked funny with all the wires and hospital bed and noises. I knew Lily would probably have some memory of her time spent in the hospital when she had pnemonia and the multiple blood tests and other medical treatments she has endured. I wasn’t prepared for how I would feel when I first laid eyes on her- I wanted to grab her and kiss her and tell her how much I love her and how that although our lives have changed, my love for her has not. The look in her eyes when she saw me, made me sad. She was nervous, unsettled. I made them set her in bed with me and we hugged and kissed. Then I began to talk to her about her little brother and how mommy was fine. I was so overjoyed to have both of my children with me that it proved difficult to hold back tears.

My mother was holding Oz when Lily first laid eyes on him. Her eyes lit up and she smiled a smile that made most of my worries dissipate. However as soon as she saw daddy holding Oz and then me- her expression changed to one of concern. It was almost as if she said “Hmmmm….I don’t know about this….”

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I missed her terribly while I was at the hospital but enjoyed getting to know my little man and rest up before the realities of being a mommy of two came at me full force. Oz and I came home on Sunday. Daddy and Lily picked us up and on the drive home, Lily began to break down. The rest of that day was filled with tears. It was like all of the emotional stress the last few days had been for her suddenly poured out of her. I empathized with her as it had been so hard on me to be away from her.

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After that one day, Lily was ready to explore her new role as a big sister! To this day she gets more and more amazing- she gives Oz his pacifier, wipes his mouth, pats his back, gives him hugs and kisses, even rocks him in his carseat and holds up toys for him to see!

She has re-discovered her baby doll now too- she mimics my mothering and I must say she is a very good mommy! Since Oz has been born she has re-discovered boobies! She knows where hers are and will nurse her baby doll when I nurse Oz. Sometimes she brings her baby to me to nurse and when she gets upset she will lay her face on my boob (not entirely sure what to do after that – because she doesn’t remember nursing). All in all it has been so touching and heart warming to see both of my children loving one another.

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Some people question whether or not it is fair to the other siblings in the house when you have a child with special needs. I have even heard people suggest maybe I should refrain from having more children because they wouldn’t get as much attention as Lily because she is special needs and will be more time consuming. To them I cry BULLSHIT.

I realize I am blessed because Lily has no major medical problems. It is true, medical problems take up a lot of time, time away from everything else in your life. But so do newborns….

The arguement that a child with special needs will take precedent over everyone else in the house and therefore take away from other children is probably a more subjective discussion.

In our household, having Lily has made James and I a much stronger couple and much closer. Lily does not take away from our relationship any more than having any child would. Now we have only been a family of 4 for a few months now but currently, Oz is at a stage of much higher maintenance than Lily- he has higher needs and therefore tends to dominate activities right now. But that will change….and then change back….and so on and so forth. See, it remains my belief that when parents choose to add another child to their family, at any given time one child may tip the balance to them.

I do believe that a child with Down syndrome benefits greatly from a having a sibling. The instinctual need to compete for resources is strong in siblings and can serve as an excellent motivator for them to keep trying, keep going. Oz will help motivate Lily to learn and try new things – maybe she won’t be as delayed? and in turn she will inspire him. Of course they will also drive each other crazy and argue and all of the other ‘fun’ stuff that goes with having a sibling (especially close in age).

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Oz loves Lily- he lights up whenever she comes near him. His first laugh was because of her. He will be different because of Lily. He will have advantages others do not, He will know pure joy, pure love. He will have empathy and sensitivity and tolerance. He won’t  have to learn this when he gets older, he will BE this as he grows up. I am not saying he won’t struggle – the first time some kid calls his sister a name or whenever he hears the word ‘retarded’ his heart may break a little. So yes, his journey may be a little different because of his sister, because of Down syndrome but it will still be his journey, his life.

I believe one of the best gifts I can give my children is one another. And who knows? We may just sprinkle in another sibling in the future to add to the joy of our little family!

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DSAM Day 23: Inked!

Life changing events inspire people. Some write, some create music, others create art, and some- Get Inked!

I will start by saying that I love tattoos. I love them for me and I love them for my husband. If I had no other financial obligations, I would have several tattoos. But for now, I have 3. My tattoos all have a spiritual meaning but only one truly makes me feel connected to God, to the Universe.

Three years ago I would have never even begun to imagine where I sit in my life today. Three years ago, I devoted my days to caring for non human primates and my evenings to dogs and families in need of training. Three years ago I lived in Salt Lake City, Utah. Three years ago James and I finally felt ‘ready’ to start a family. Three years can be both an eternity and a flash. Although I do not feel like a different person, I sometimes look at my life from an observer’s point of view and feel as though I am indeed watching a movie about someone else.

I have witnessed more miracles and had increasingly more intricate roles to play in the universal design then ever in my life- all in the last three years.

I have been humbled by the power of humanity as well as the power of prayer. I have known true angels that walk this earth. I have a much deeper connection to Mother Earth which has given me such a profound understanding and respect for life. All life. Life itself has become so much more important to me now.

I wanted to celebrate. I wanted to celebrate the catalyst for all of these events…..you guessed it, that would be Lily!

Celebration = Tattoo 🙂

I decided thoughtfully on what tattoo would best express Lily. A flower, (of course this would be a Lilly), and a portrait of her hand, palm up.

Why her hand?

Simple. Lily’s hand has a dual meaning- symbolizing both her birth and her extra chromosome. I am not a fan of t-shirts and bumper stickers and all the other fanfare on Down syndrome. I do not feel celebratory about Down syndrome. I do not feel it is what makes Lily who she is- to quote my husband here, “Down syndrome is not a personality trait, it’s a barrier for my daughter.” That being said, I am an advocate for people with Down syndrome and most importantly for Lily,

Some people with DS have a single crease on the palm of their hand instead of 3 creases. This is called a Simian or Palmer’s crease. Although it is relatively meaningless medically speaking, it does represent Down syndrome for me because Lily has this crease.

A carefully chosen artist, a xeroxed copy of Lily’s exact hand print and two hours of pain later-my tribute tattoo for Lily and all the miracles her arrival has opened my eyes to:

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Lily,

I love you with all my being, all my soul. My love has no depth for it is beyond measurement, time, and space. Although one day you will venture off on your own, I carry you with me always as we shall journey together through this life.

Love,

Mom

DSAM Day 22: Hemming Pants

I saw a meme the other day that said,

“Hell yes I am short! God stops when his creation is perfect and I just didn’t take as long!”

I read somewhere that the average height for men with Down syndrome is 5’1 and for women is 4’9!  So what does this mean to me right now?

I am hemming pants!

LOL! Lily is now wearing 24 month pants (well at least her waist and hips are!) The trouble is, her little legs are shorter than the average 24 month old! So this mama is dusting off her sewing machine and learning the art of the hem line!

The biggest drawback here is I have to be careful not to buy pants with decorative hems on the pant legs because I don’t know how to hem those yet!

All of that aside, I am so happy she is growing healthy and strong!

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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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