DSAM Day 31: Lilyisms

21 Lilyisms:

1. Have faith that God know what He is doing (even if you aren’t so sure)

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2. Be your own advocate.

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3. Everyone needs someone to cuddle with.

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4. Whenever you can, choose happiness over sorrow.

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5. Try not to be too sensitive, most people don’t mean to offend.

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6. Naps are better with a furry friend.

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7. Be bold, be a rock n roll princess.

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8. Don’t be afraid to rediscover the “old ways” of doing things, sometimes they are better.

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9. Peace is found when you can find comfort wherever you are.

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10. Explore your inner faye, it’s worth it.

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11. When in doubt, pinky out!

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12. Don’t be afraid to make a mess- sometimes that’s the best part!

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13. Always have an escape plan.

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14. Dare to stand up and feel the wind in your face.

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15. All food tastes better when made in a faerie kitchen.

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16. Sometimes the best toy is your imagination.

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17. When you need to rest your head, the only thing better than a pilow, is your dad!

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18. Make a funny face every day, you wll feel better.

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19. Hugs make souls smile.

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20. There is nothing wrong with needing a moment to warm up to a situation.

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21Some color outside the box, others color anywhere they please.

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Yes, there is something about Lily that draws people in.  Lily won’t need to spend countless hours studying eastern philosophies or pay top dollar for spiritual retreats to find her inner peace- she already has it. Everyone can sense it about her- everyone wants that for themselves. I want that. I strive to attain and hold onto what Lily has naturally. I believe that life is made up of lessons that serve to enhance my soul- Lily  holds my greatest and most sacred lesson. I am honored to receive it. I am beyond grateful to be her mother.

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Moments become Memories….

When Lily was still very much a baby, I had my first ‘unpleasant’ encounter with an elderly woman at a store. As Lily and I were scooting along in our cart enjoying a little shopping, we were stopped by a woman. She looked at Lily and mentioned how cute she was (not to brag but this happns all the time so I thought nothing of it). I stopped the cart and allowed the woman to meet Lily. Then she asked the most horrifying question:

“How long do they live?”

Life Expectancy for people with Down syndrome has increased dramatically over the decades. Due to advances in medical technology, their life span has grown from 9yrs. old (in 1910) to 25yrs. old (in 1983) to 60yrs. old today with several living well into their 70’s.

There are more than 400,000 people living with Down syndrome in the United States. More and more people are interacting with individuals with Down syndrome, increasing the need for widespread public education and awareness. No kidding, right? This woman really needed some education and maybe a little tact!

However, she reminded me of just how far we have come as a society. Only 40 years ago, things were so very different. Parents of children with Down syndrome were encouraged to send them off to an institution to live and told to forget about them. You rarely saw anyone with Down syndrome because thay were kept hidden away, like a shameful secret. If you have ever seen a paranormal or haunted show – they usually involve a mental institution, careless staff and extreme mistreatment of the individuals in their care. Let your imagination take you to that visual as thats where most individuals with Down syndrome ended up- forgotten.

Now shaking off that horrendous image, fast forward to today- today most everyone knows someone with special needs. You see people with Down syndrome working various jobs, having social and romantic relationships and living an independent life. I often reflect on this in a moment of prayer and am so grateful that Lily was born in todays world. Of course there is more to do, more awareness to offer but the world is so much better than it used to be.

No parent wants to discuss how long their child has to live. And frankly no one knows the answer! We hope as parents, that our children will outlive us, as that is the natural order of life but we cannot control life and death. We don’t get the final say in this matter.

One of my most favorite quotes states “Life is what happens to you when you’re busy making other plans.” – John Lennon. If you forget to live in the moment, you will miss the moment. Lily lives in the moment and because of her I am learning how. There is a surprising joy to each moment and I don’t want to miss any of it!

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DSAM Day 25: My Little Bossy Cow

One of the moments I have been looking most forward to since learning I would be a mom is pretend play. Playing dolls, cars, puzzles, little made up games…oh yeah bring it on!

Lily first started what her therapist called pretend play when she was about 10 months old. She began learning to roll a ball back and forth to me. Then quickly escalated to putting shapes in the slots, moving fisher price guys around, placing the farm animals into the different pens and barns and of course initating a rousing game of peek a boo! Now she mothers her baby, completes puzzles, reads books to her brother, and drives her cars around – she has even drove one of her guys around on one of her cars!

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What I didn’t expect (or rather didn’t think of) would be that with pretend play also comes a level of attitude and bossiness that is quite impressive (and incredibly daunting at times). Lily is very opinionated and very independent. Only Lily knows the correct way to play and for exactly how long.

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Man this child has an amazing attention span- she can play a game until you find yourself thinking about offering her anything, even chocolate, just to re-direct her. I mean really, how long can one possibly play the upside down game or chase? I have played patty cake and itsy bitsy spider until my hands ached! LOL!

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And holy smokes- you better play the right way or else you risk being corrected or rather huffed at. The cow goes in the barn not the stall!! The blonde guy rides on the red car- get it right mom! The giraffe walks sideways while the elephant lays down. Don’t touch that one! Aaaaagh!! Look with your eyes mom, not your hands. No, I want BOTH cars. And so on and so on and so on…. 🙂

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So yes, I have a little bossy cow on my hands and as frustrating and tiresome as it can be, I know that every second of this, proves to me that my little girl is growing cognitively! Since cognitive delays are pretty much a guarantee with Down syndrome, I often wonder what that will look like. When will the delays reflect retardation? What exactly IS retardation? Honestly I do not know- I fear, I worry, I ponder but I do not know.

What I do know is that my Lily is a typical acting almost 2 year old that strives for her independence, gets frustrated when things don’t go her way and has a teensy weensy (okay maybe huge) case of bossy cow syndrome!

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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

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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December Leftovers Dedication

I started blogging because candy crush got too hard.

Just kidding. I have dabbled with writing for years. I have even been published a couple of times and won poetry contests. But I didn’t really begin to feel inspired until I met an amazing group of women.

I joined an app when I became pregnant with Lily. This app tracked my pregnancy, gave me helpful, and sometimes silly advice, and connected me with other women all due in December from all over the world.

My daughter was born in December 2011 and I am still connected to these amazing women. Some of us have gotten married, gotten divorced, had another child, graduated school and even started their own business. But all of us have remained a strong support network for one another.

There are not many safe zones in life where you can vent honestly and vulnerably to another person but I have one. I am one of the lucky ones. This group of women is unlike any other group I have ever experienced. They are able to respectfully disagree, offer you a wider perspective, help you think clearly about important desicions, and guide you to be a better you. There is no ”mob mentality’ here. They do not tell  you just what you want to hear but what you need to hear. We are a diverse group and therin lies diverse opinions on parenting and relationships- but it’s okay. It’s okay because none of us think we are superior to any one else therefore we are free to debate ideas without judgement, without creating an unpleasant environment. How beautiful is that?

These women pooled their resources and saved my family from despair last Christmas and have since done the same for other individuals in need. Many of us have not had the chance to meet in person but several of us phone, text and skype one another. Our children know each other as ‘cousins’. For those out of the loop, it may appear as a crazy delusion that a hundred plus women scattered all over the world can be closer to one another than some family members…but it is true.

I owe this blog in large part due to this astonishing gaggle of girls. Their constant flow of support and encouragement has given me the incentive to make my writings and ramblings public. Thank you fellow mommies, women and friends for you all as individuals and as a group have touched my heart and imprinted my family in ways I cannot explain. I must admit I am having a ball sharing my world in writing. The journey of my life has always taken me to interesting places and my current adventures in motherhood have yet to disappoint. I love you all and hope to keep you close throughout our shared travels in motherhood, womanhood and friendship.

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