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.

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.

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 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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Blood, Sweat & Tears

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A diagnosis of Down syndrome comes with many things. Most of which sound scary, especially the list of potential medical problems. From heart problems to thyroid to respiratory, the list can be overwhelming and intimidating. Children with DS even have their own Pediatric Guidelines for testing.

Lily has no heart problems. This is huge, as many of her friends are members of the mended hearts club. She is and will be tested annually for any thyroid problems. This involves a blood draw. In Lily’s young life she has had several blood draws. When she was 3 months old she spent 9 days in the hospital with pneumonia. As scary as that time was, nothing compares to last December.

Lily has had trouble gaining weight – this is common for children with DS and can be the first indication of thyroid problem. So her pediatrician ordered a blood test. Here they would test for a slew of problems including leukemia. Lily’s blood test came back with high phosphotase levels. A second blood draw, and a consult with an endocrinologist later we were told she may have bone or liver disease. To rule it out she had to endure yet another blood draw and a bone scan of her entire body.

She had so much blood drawn, she was put on a 30 day suspension from any further blood draws- meaning she had no more to give and needed time to allow her body to recover. The bone scan consists of x-raying every bone in her body. Not painful but a little uncomfortable and very scary for a 1 year old.

The day Lily had the bone scan was a hard one for this mama. I was pregnant with her brother and could not be in the room with her. Knowing this ahead of time, her Aunt Sarah was able to come and take my place to guard over her and offer her comfort. I sat outside the room and listened to her cry for what seemed like eternity. I knew she was in hands as good as my own with Sarah but I still ached to go in and ‘save her’. Once completed, the waiting game began.

Her Endo Dr said he would call if there was bad news and send a letter if it was good news. Obviously we prayed for a letter and jumped every time my phone rang. Days passed and we got the glorious letter we hoped for (well sort of). It stated that ‘nothing noteworthy was seen” but also said a follow up blood test would be needed to rule it out completely.

It is truly strange the thoughts that run through your head when you are waiting to hear if your child is about to be diagnosed with a life-threatening disease. Or rather, the absence of thought. The looming threat over our daughter’s life was too big for me to digest at that time so I didn’t. There have only been a handful of times I have actually got down on my knees in prayer. I pray daily but not usually in that form.  I dropped to my knees and prayed, begged for my daughter. I have felt God several times in my life and know His presence well. As I took comfort knowing He was there, my phone rang. I answered. On the other end of the phone was her dr. When he said who he was, I laughed nervously and told him he is not supposed to call me because that meant bad news. He told me that he usually never calls but felt compelled to call and tell me himself that Lily was fine. She did not have bone disease. She did not have liver disease. He didn’t need to see her again.

Amen.

Since that time, Lily has remained healthy with no real concerns. She will continue to be tested every year for the various things that can haunt a person with DS and we will continue to pray for her health.

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