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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DSAM Day 29: Disclaimer- Lily has Down syndrome

What is Normal?

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I recently heard a quote that, “Normal is just a setting on a dryer.” When I was in middle school I wanted to be normal. When I was in high school, I wanted to be different. As an adult I just want to be me.

One of the first things I learned from the Down syndrome community was how not to offend people by using the ‘wrong’ words. This is where I was told that the word normal is rude and offensive. The proper word to use when describing other children that did not have DS, was ‘typical’. The linguist in me immediately began analyzing what the words actually meant and which word was in fact more appropriate within the context I would refer to. The other part of me rolled my eyes.

I believe in educating people and being tolerant of those that differ from you in whatever way. I believe in being respectful. But I also realize that the majority of ‘typical’ people are not trying to be hurtful, degrading or intolerant when they misspeak.

I personally am not offended when people use the word, normal, to refer to children that do not have DS. When you ask someone what normal is most often they will laugh and say well nobody and nothing is really NORMAL. I still refer to other children as normal, knowing full well that there is no normal when it comes to humans or animals.

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I have noticed how difficult and awkward it is for people to ask questions and speak about Lily having DS. Most people seem so afraid that in their ignorance of DS, they will offend me and thus end up in an uncomfortable or embarrassing encounter so they look but don’t say anything or they speak around the topic. I believe there is merit in learning to lighten up a little- it is more important to me to normalize discussing DS then it is for people to use the correct terminology. I appreciate so much when people come up to me and ask does your daughter have DS? To me that gets rid of the stigma that Down syndrome is hush hush and something bad that we can’t ask about.

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In my almost 2 years of being Lily’s mom, I have learned that the more friendly and open I am about Lily, the more relaxed and forthcoming others are. When Lily and I are out and about, we are approached, often several times, by people wanting to extend their hellos to us and remark on what a doll Lily is. Sometimes they venture a comment regarding Down syndrome, sometimes not. I used to wonder if Lily received so much attention from strangers because they knew she had Down syndrome and were giving her ‘special’ treatment, Maybe they are and maybe they aren’t- Oz seems to generate quite a bit of attention for himself too- perhaps its because I have very happy, outgoing, and friendly children- who wouldn’t want to stop and enjoy a little of that? 🙂

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Now I am not saying that I do not sometimes feel offended or even hurt, I have days that I am much more sensitive about things than others. However, I return to the bigger picture. A world where Lily can evolve as herself, in the wide open, around all the ‘normal’ people without any hushed disclaimers.

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DSAM Day 28:  A Silent Question Answered

DSAM Day 28: A Silent Question Answered

A question I have never been asked (at least by those without a child with Down syndrome)–

What was it like to receive the diagnosis that our child will have Down syndrome?

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Most of you know me fairly well with regards to my attitude about Lily and Down syndrome. I have been complimented countless times on how strong I am and what a great attitude I have-  and yes I am strong and yes I do have a great attitude. But it wasn’t that way in the beginning……

At our 16 week ultrasound we found out we were having a little girl. Shortly after learning that, we also learned that she most likely had Down syndrome. Shortly after that we had to verbally tell our doctor that we did not want to terminate our daughter. Most know this story- what hardly anyone knows is what happened when we got home.

I don’t remember the drive home. When I got home I crumbled. I could barely walk, I couldn’t think past my emotions. I only knew and understood one thing: I am not killing my daughter- I want her so badly and we tried so hard. Like most people, I have my own personal relationship with God with its ups and downs, some moments more faith-filled than others. On my knees I asked Him, Why me? I don’t deserve this. Why my child? Those questions escalated into more of a How dare you? sort of flair. No need for me to go into more detail here – you all understand. When my declarations to God were over – I decided to do some research.

I will admit – the very first thing I did was google pictures of people with Down syndrome. Looking at some of the photos that popped up and reading about all the problems and especially reading the words, “mentally retarded”– I just died inside. I felt like all the air in the world was gone, someone had punched me in the gut and was now sitting on my chest. The world spun, and I couldn’t hang on- I wanted to wake up from this nightmare. I was trapped in an unfamiliar part of my mind and I was clawing my way back to a reality I had once known but no longer existed. There was no way out, no escape, nothing but unbridled, uncontrollable terror.

I began grieving for the child I thought I was going to have, I grieved for myself. I grieved for the baby I was carrying. I grieved for 3 days. I cried for 3 days. Then the tears dried up and I ended my silent treatment toward God.

I remember sitting and holding my belly and praying to God to let her be okay, let her be okay, let her be okay. I sought refuge in my prayer and comfort in my husband.

Then I forgot all about it. (yep, I really did). I continued on with my pregnancy without much thought toward her maybe having DS.

The day Lily was born was well, wow. The doctor told me right away that she looked like she had Down syndrome. As we waited for the chromosome test, I would stare at her trying to decide if she ‘looked’ like she had Downs or not. Some moments yes, others no. They explained to me the features they saw but it was hard to see.

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I was sitting in the NICU when 3 doctors, 2 nurses and a social worker entered our room. Lily was asleep in my arms, I was in heaven.  They told me the results were in and she does in fact have Down syndrome. The tears slid down my face before I could stop them. This time though, it was different. This time I could look at my daughter, feel her, hold her, breathe her in.

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I knew God had indeed answered my prayers, she was okay. Almost as soon as the tears began they ended. I no longer cared. I no longer feared. I just felt peaceful- I was a mommy. I had a little girl. She is perfect.

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 26: What I didn’t know I didn’t know

We, as humans, know what we know. We also know what we don’t know. But there is a vast array of things out there that we don’t know, we don’t know.

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Becoming a mother changed me. 

I didn’t know I didn’t know that being a mother would be the worst thing I could ever do to myself.

I am now capable of unspeakable thoughts. My mind has opened up a corner of indescribable fury. The very thought of anyone hurting a child, especially my own, sends my heart to this dark, once unknown place of wrath. I find myself equally mortified and pleased with my new found abilities. 

I have a never ending wealth of tears that bubble out of nowhere and fill oceans without breaking a sweat.

I can tap into a level of worry and anxiety that would intice the most veteran psychiatrists to dust off their research hats and sharpen their pencils.

I can experience fear so vivdly paralyzing that I can make my body go completely numb.

I didn’t know that I didn’t know what love is.

I didn’t know that I could fall in love with a person I had never met, never spoken to, never seen.

I didn’t know that I would be willing to die for someone I barely knew.

i didn’t know that I could be so vulnerable yet so brave for another person.

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I didn’t know I didn’t know God

I didn’t know that God could teach me how to endure pain in such a painless way.

I didn’t know that God trusted me to be a care taker to one of His most precious gifts.

I didn’t know that God had guided me on a path so intricately woven with blessings and magick.

I didn’t know I didn’t know that I always wanted to be Lilys’ mother

I didn’t know it would be so natural and so easy to become an advcate for my child.

I didn’t know that I wouldn’t care about my child’s diagnosis.

I didn’t know that even in the worst moments, I would tell God thank you for letting me be this little girls mother.

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I didn’t know I didn’t know about Down syndrome

I didn’t know that I could look at my daughter and not see Down syndrome.

I didn’t know I would feel lucky that my daughter ‘only has Down syndrome’.

I didn’t know I would forget she had Down syndrome.

Once you begin to learn the things that you didn’t know, you are forever altered, locked in a state of awareness that you can never truly turn away from. Since becoming a mother, I have awakened a whole new self and although I sometimes feel as though I live in a half-terrified state of mind, I can honestly say that my life is more vivd and whimsical and joyful than I could have imagined. Who knew?

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DSAM Day 30: Stop It

Everyone has there own little list of things that irk them. Some call it their “Pet Peeve” list. James and I refer to ours as a “Stop It” list. Some items may surprise you!

” God only gives special kids to special parents.”

IMG_4705 What does this mean really? Who gets to define “special”?  Is the mother of a normal kid who is sitting in an uncomfortable hospital chair, half starved because she forgot to eat in her worry for her son who was admitted to the hospital for a high fever- not special? Is the father who comes home from work and immediately seeks out his normal children to play with before reading them stories and staying up late to plan a fabulous family weekend – not special? We are not special.We are parents. Now that being said, I do think we are pretty awesome parents but no different than any other good parent.

They are such a pleasure.” “Those people are always a joy. “Your daughter is so cute, I just love them.”

Who exactly are they? Is this the same they as in “They are always watching you?” or maybe “They are gonna get you?” If anyone were to speak this way about a race of people, they would be considered racist. Our daughter is an individual, not a they. Unfortunately, such sweet compliments drown in very poor phrasing.

“Down syndrome is the greatest thing that ever happened to me.”

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 I have heard some parents express this sentiment. And while at first I was taken aback, I do believe I know what they are trying to say. My life has changed dramatically since becoming a mother, but becoming Lily’s mother has brought me opportunities that otherwise would not have existed. Opportunities of friendship, creativity, advocacy and confrontation. No, I do not believe that Down Syndrome is the greatest thing that has ever happened to me and truth be told I would take it away or “cure” Lily from it in a heartbeat if I could. I do believe that having my children and my husband are the greatest things that have ever happened to me.

“She will do things in her own time.”

This statement gets thrown around quite a bit when people don’t know what to say or don’t feel like they can help. Although I understand that and yes it is always good to be given perspective, that is not at all what I need to hear. Of course all people will do things in their own time, however sometimes they need a little help. Sometimes the parent who is feeling guilty or inadequate because their child is delayed, needs a little help. This statement actually makes me feel even worse for worrying about it. What would be so much better here would be a statement of reassurance that I’m doing a good job and compassion for my feelings.

“I have to go deal with my children.”

We hear it all the time, “Sorry I have to go deal with my child.” or “How do I handle my child?” Excuse me? Take a quick moment and reflect on what you are saying. Children aren’t things that need ‘handling’ or to be ‘dealt with’. This is so disrespectful and degrading to our children. They are not property or a chore on a list, they are little human beings who are much more deserving than something one must ‘deal with’. We realize that many people don’t think about what they say, but perhaps they should. I imagine most adults would be mortified if they knew people thought of them as something they must ‘deal with.’

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“Staring at my children.”

We see you staring at our daughter, trying to figure out whats wrong with her. We see you staring at our son trying to figure out if there is anything wrong with him. Finally we see you staring at us. Sometimes you look at us with pity, sometimes with admiration and sometimes with embarassment. To you we simply say, Stop It! Our joyful presence should announce to you that we are approachable. Come say hello or move along please,

“How old is she?” “Oh”

Yeah… our daughter is smaller than yours. Our daughter is not abe to do all the things your child of the same age can do. We are fully aware of the difference between our children and are not entering a competition with you so please do not respond with such a sorrow filled exclamation. Do we look sorrowful? No.

“It’s okay, my child didn’t (walk/talk/dance/sing/snore/whatever else) until they were much older too.”

First problem: Maybe it is just us but this sounds like pity. Pity used to be a wonderful expression of sympathy but in todays world it has taken on a whole different tone. Being pitied evokes immediate irritation and sometimes anger. For us, we just don’t get it. Why pity us? We are one of the more blessed familes we know. Second problem: It is NOT the same. I am sorry but it’s not and it’s okay that it’s not the same. We don’t have to walk the same path to show one another empathy. Please stop comparing your typical child to mine.

“You can’t make them do it.”

What does this comment want from us? We are intelligent enough to understand that you cannot make someone do something they either do not want or cannot do. Was this even up for debate? Are you telling us this because you feared we had forgotten this concept? You are right, you can’t make them do it. But you can help motivate them, influence them, give them the confidence they need and so on and so on.. If you truly are wanting to help, then a different, more thoughtful response would be greatly appreciated.

So there you all go, our Stop It list!  This was an interesting write – I hope this post finds you in good humor. If it doesn’t then may we suggest you just Stop It! Lol 🙂

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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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