Lily is 2 (Part One)

2 years ago I became a mother. 2 years ago the world suddenly became a more dangerous place. 2 years ago I learned what Down syndrome meant. 2 years ago I learned who I can be.

2 years ago I met Lily Luet.

Oh Lily Lu, my little Lulu, how you have grown and changed. I should have known that you would be a firecracker, one who not only plays by her own rules but actually designs the game we play. With each passing moment, each new year, you become more of an individual and truer to yourself. This last year, you have learned and discovered so many new things about yourself and about your world.

You can identify your body parts (including your boobies and your butt) I find people’s reaction to this amusing 🙂 This has led you to an awareness of your clothing and your undying determination to help me with every single clothing and diaper change needed. Whether I want the help or not.

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You are enthralled with books- you understand how to hold them, turn the pages, you know if they are upside down and you enjoy pointing to everything and even reading some of them to me and your brother, although we have no idea what language you are speaking.

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Your hair is longer and I have swept the fine threads of your hair behind your tiny ear so many times that you now return the favor and are quick to move my hair out of my face and tuck it behind my ear. You are so thoughtful.

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You have a good sense of cleanliness now. Your bath time is sacred and you secretly wish you could live in the bath tub. You are thrilled to wash your hands and will bulldoze over any obstacle on your path to brush your teeth. You know where your toothbrush lives and you enjoy a bit of flossing too.

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You are a master of all things pretend. Your little people and little animals live a very rich and funfilled life. They adventure all over the place and enjoy many directives. You are an excellent mommy and big sister – you insist your babies are properly cared for and believe in nursing and baby wearing.

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Anything, and I mean anything can magically change into a telephone. This includes but is not limited to food items, aka the banana phone you made a call on this morning.

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You have learned how to solve problems- if your dress interferes with your crawling speed, simply place the hem in your mouth and crawl on.

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You have discovered the pleasure of stabbing things with a fork and stirring with a spoon. You have also made it your mission to free all the food from their constrained spaces inside plates and bowls. You are their hero. They celebrate your bravery.

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You have learned the value of communication, you sign for more and for elephant. So far you have not asked for both at the same time. You have about 15 words. You talk extensively in your own language but you are trying to teach me how to understand Lily. I am slow and you sometimes get frustrated with me.

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You are trying to walk and take some steps now although it is much more pleasing to you to crawl at such high speeds you can out crawl the dog and cat!

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You are a couch climbing master and are currently perfecting your craft by attempting more dangerous climbs.

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You can draw a mean line. You color like you are divinely inspired but paper is irrelevant to you.

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You hug and kiss and even shake hands – you are very social and out going. People are compelled to engage with you when we are out.

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You sleep in your big girl bed now. You love your bed. You love getting out of your bed. You are still secretly hoping that your dad and I will be fooled by your fake snoring and leave you alone to your own devices under the guise of sleep. In the morning when you wake you climb out of your bed and shout for daddy while banging on the baby gate that confines you to your room.

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You believe the very best way to watch cartoons is standing directly in front of the TV, with your hand down the back of your pant and the tops of your butt cheeks exposed because you believe they need air too.

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You have unleashed the power of your index finger and use it to direct us to comply with your list of demands. Your item of choice must be retrieved and placed in the exact location your index finger directs.

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You have decided that food is not to be trusted and therefore must be immediately refused. After intense interrogations that include, sniffing, stabbing, swirling and smashing, only the very few are deemed worthy of being eaten. Only the raspberries and sweet potatoes passed inspection for your Thanksgiving dinner.

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Lily, my reflections here are unending, as you fill up my life with so many stories, memories, laughs and tears. I am and will always remain proud to be your mother and your guide here on Earth. 

December is a beautiful month filled with blessings and magic but there is a darker side to December. As joyous as a birthday celebration is,  there is another side to Lily turning two. Her turning two also means an onslaught of doctor appointments, tests and evaluations. December is when we must face Down syndrome head on.

To be continued…..

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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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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.