Scary Babies

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What would A Surprising Joy be without a big surprise?

We are thrilled to be welcoming our third child to our little family this March! Much like her older sister, this little girl is already enjoying surprising mommy & daddy. While unexpected, she is very much wanted and we cannot wait to meet her!

Pregnancy is a weird experience. I suppose it is magical and amazing but mostly, I find it strange. Each pregnancy has been different, however there is a consistent theme in mine…fear of the ultrasounds.

Depending on who you speak with, some parents will tell you that once they had a child with special needs, they were too scared to have more children. Others state that they never gave it any thought and some say they would proceed but in a half terrified state. I fall somewhere in between category  two & three. We wanted more than one child and Lily, being our first, and having Down syndrome really did not deter us much from having additional children. What it did do, was create an innate fear within us when it was time for the anatomy scan ultrasound.

During my pregnancy with Oz, we opted out of any prenatal testing, just as we had with Lily. Prenatal testing takes on a whole new meaning once you already have a child with Down syndrome. There is a cloud of conflicting emotions. Some, all of your friends would understand but others, you keep to yourself partly because you aren’t sure what to make of them yourself and partly because the thought of being judged by others makes you want to vomit. (And you are already nauseous enough as it is!).

How should I feel about finding out my next child is “normal”? What if I am happy? Would that be wrong? Would that be an insult to Lily?

What if I don’t want to have another child with special needs and want to pray for a “normal” child? Am I a terrible mother?

Now, if you have followed our journey thus far, you will know that we would never terminate our child because of a disability. So even with these thoughts above, that never crossed our mind. But all those other thoughts, did. And they were hard to hear and even harder to reconcile.

I did my best to ignore them and managed to enjoy being pregnant last time (aside from the physical discomfort).  Oz was born happy & healthy & no major problems.

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Now I am in my final pregnancy. Knowing this will be my last baby I carry on the inside (we will be fostering later), definitely creates a different experience all together. But those thoughts…those thoughts are there…once buried, they have resurfaced and I dared to explore them.

The biggest difference in this pregnancy is that I decided to have a prenatal test done. This test would clue us in on any abnormal chromosomal activity. So effectively, we would know when I was barely 10 weeks if there was a chromosomal abnormality present. (As a big bonus, we also would learn the gender of our baby!) Every pregnancy is scary so I decided to shed some light on some of the fear so that I could begin to let go and revel in this one.

While waiting for the results, I began to face the thoughts that had made me feel like a monster before and were threatening to again.

“Am I a bad mother for praying for the results to come back normal?”

Of course not. No parent wants their child to have a disability that would impede their health or impact their quality of life. I have stated this before but we are so very lucky that Lily does not have any health problems as of yet. But her medical future is still a scary one for us.

“Am I somehow de-valuing or insulting Lily by not wanting to have another child with special needs?”

I guess that would depend on how you look at this question. Since we chose to have Lily regardless and would make that choice over and over again for all our children, my answer is no. For the same reason as stated above, I want my children to have all the opportunity and ease of life as possible. Knowing the uncertainties and the potential health problems and seeing first hand what a disability can do to your child’s spirit some days, of course I would never wish that on a child. I don’t wish that on Lily. I would remove any disability from my children if I could, and I am not going to feel bad for thinking that way.

Our results came back negative for any overt chromosome abnormalities. I was flooded with relief, quickly followed by the heaviness of guilt. No matter what I had reasoned, it is obvious that these thoughts had imbedded in me self-doubt. I was so insecure about how to feel that I wasn’t sure how to let my friends know, either. Should I use exclamation points and smiley faces? Should I just state it as a fact void of emotion? Turns, out that it really didn’t matter. This was my private battle, not anyone elses. Or so I thought…

I have had  amazing opportunities to meet with and speak to hundreds of parents that either have a child with special needs or have one on the way.  I have been blessed that many of these parents have shared their fears along with their joys with me. And I learned that I am most certainly not the only one with these intruding and uncomfortable thoughts. I am also not the only one who has felt alone and insecure about sharing these thoughts with anyone else. To all of us parents that have went on and had other children since our little one with special needs, I get you and I know you get me. Thank you for that.

Now we still have that big, scary anatomy scan coming up in a couple of weeks. I have chosen to not care anymore. Those thoughts will come and go and eventually will fade back into the recesses of my mind where I prefer them to reside anyway. Soon we will welcome our little girl. She will meet her big sister and big brother and all will be right with our little world, no matter who she is and who she will become. ❤

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Lily Luet

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Oz Jameson

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Baby Girl

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And she drooled pink…..

Parents are uniquely qualified for investigative research.

A beautiful Saturday morning in the McKenzie household- I was giggling with Oz on the couch and Lily was helping daddy in the kitchen. Then I hear my husband say, “What is coming out of your mouth?” In true toddler form, she ran away to the living room as he tried to get a better look at her.

My husband exclaims, I think she is bleeding! As I grab her and plop her on my lap, I see that her shirt is covered in countless drips of a pepto bismal-looking pink. Following her stained shirt up to her mouth, I see her chin covered in the same pink drool and more in her mouth. After a brief debate about the color (I won) we confirmed it wasn’t blood. Unless of course my daughter is part faerie, in which case pink blood may be normal.

The next step was figuring out what in the world it was….this meant a more invasive technique. We chose the lay her my lap and use her toothbrush to help us look in her mouth. Anyone who has ever dared to put their finger in their toddlers mouth, never did it again and probably lost part of their finger! In case you are unaware, they BITE! So the toothbrush dicovered a small clump of pink behind a tooth. We lost the wrestling match at this point though and had to retreat for a minute. A drink of water to flush out the remainder and we were confident that whatever it was, was gone.

But as scientists, and more importantly, still new parents, we were compelled to uncover the source of the pink drool. She could not have gotten into any medicine or chemical. It looked like candy but had no discernable odor like candy. What would dye my daughters drool pink? Since we had ruled out anything dangerous we relaxed and began to gaze around the room.

Then I saw it. Smack dab in the tray of her easel was a pink crayon, with a small chunk missing. It looked so innocent just lying there, silent.

I realize that we are only at the beginning of stories like this and you can believe I will be honing my observation skills!

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Lily turns 2! (Part two) “Results Are In”

“Down syndrome is only the background in our life, not the scenary.”

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Ahhh December. December is a month filled with magic and excitement. December has an energy to it unlike any other month. For me, December has always been extra special as it holds my birthday within it’ s calendar and now December holds Lily’s birthday as well. On December 2nd, Lily turned two! Yes, December is a beautiful month filled with blessings and memories 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.

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A brief recap of December’s past:

Dec 2011– Lily was born and we juggled being new parents with a preemie and Down syndrome diagnosis all at once.

Dec 2012– We were waiting to hear back if Lily had bone and/or liver disease as some of her test results came back abnormal.

And here we are Dec 2013-

Now before I come off as a negative, glass half empty type of person, let me say that as a parent to a child with Down syndrome, it is not really a matter of IF she will have some variance of  medical problem but rather WHEN and WHAT. So my reluctance and grim outlook on doctor appointments and test results is justified or at the very least, understandable. So off to her dr we go and off to face Down syndrome in its’ many forms…

Now contrary to what many may think, we do not actually talk about Down syndrome every day, we don’t really even think about it most days, and sometimes we even forget about it completely. As Lily is getting older, I admit it is harder to forget about DS but it still remains only a background setting to our lives, not our scenary.

So when the very first thing I must do at the dr is fill out a developmental form for average 2 year olds, I feel the all too familiar, icy feeling of Down syndrome coming into the forefront of my brain and slapping my conciousness around.  This time, I could harldly answer yes to any of the items listed. The only area I could answer yes in was in her problem solving skills. Although I am not blind, nor ignorant, I really had no idea just how behind (delayed) Lily is in her motors and communication. It stung.

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Next up was her regular pediatrician evaluation and discussion. I love her pediatrician and we always chat about the right course of action for Lily in her whole health. We made a plan and proceeded forth with the lab work.

Lily has had her blood drawn plenty of times and I am always in awe at how well she handles herself. She did not disappoint this time either. This time her brother Oz, now 5 months old, was with us and he was very unsettled by the experience. I got my first glimpse of what an amazing brother he is and will be- as Lily cried, he began yelling and even growling at the techs!

—Round One of appointments is done! Now we wait for the test results.—

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Next up, Lily meets with a developmental pediatrician. She is wonderful too and is helpful at looking at the overall picture of where Lily is and how she is doing. Since medically we are waiting test results, we focus more on development.

Lily isn’t walking.

Here is where I receive another little smack from Down syndrome. Lily’s left leg is severely weaker than her right. She is asymetrical. Her asymetry was more likely due to her being born early- the vascular connectors in her brain were not developed yet. In a typical child, they could overcome this quickly with just a little PT help. In a child with DS, it means she must now triple her efforts and it will be four times as hard for her to walk. 😦

Lily’s inability to walk stirs up all sorts of emotions within me. Some I prefer not to share and others I just don’t really understand. Will Lily walk? Yes, most likely. So why do I care that she can’t walk now? Well, I guess I am  just like every other parent, I hate that my child is delayed in something. I hate that she wants to do something but can’t. I hate that all of her friends can walk except for her. I hate putting on a happy face and agreeing that she will walk in her own time and yes, she is an excellent crawler. I hate that I feel this way at all. But I do. And now I hate that Down syndrome is officially creating a barrier for her.

So I pull up my boot straps and now we are going to PT 4 times a week as well as working harder at home. (This is in addition to Speech therapy 2 times a week) Holy crap.

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Now here is where my heart is lifted. Lily is currently testing right on time, if not a tiny bit advanced, in her cognitive skills. That means she is smart. Every parent wants to hear that, I needed to hear that. My daughter is an excellent problem solver and does beautifully in social situations and pretend play.  I am having an interesting experience of emotion as I write the paragraph above and then this one- a complexity of feelings are swirling around me and I feel completely emersed in the insanity of the happy/sad paradox I am in. Ain’t parenthood grand? 😉

As for the less dramatic but equally important information: Lily is speaking at a 12-15 month old level, she is only mildly behind in her fine motor (nothing anyone is concerned about) and advanced socially.

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So that is our plan for her developmental delays- more therapy! We can do that!

Back to the medical: Lily gets tested for thyroid every 6 months to a year. 60-70% of people with DS have a thyroid problem and take medication for it- we know several who already have begun treatment. Although it is not a guarentee that she will have it, it is likely. Every year she gets tested for Leukemia. Children with DS have a higher risk of having leukemia and that risk never goes away- she will have a CBC (blood count) done for the rest of her life. This time we requested she be tested for celiac disease too- it can be common with DS and she seems to get red cheeks after eating grains. (I read somewhere that that is a symptom).

Results are in!

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No Leukemia!!

No Celiac Disease!

Elevated TSH (Thyroid Producing Hormone)- but normal T2, T3 (thyroid hormones). This may or may not mean anything. We are now waiting on the Endocrinologist we saw last year to review the results and decide what he would like to do.

So basically- She’s HEALTHY!!! (Phew!)

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As I look at my little girl, I see so many things. I see big blue eyes, I see a fierce independent streak, I see a drive to accomplish whatever she sets her mind to, and I see an inner beauty that together with her outer beauty makes her quite striking and amazing. As she gets older, I also see Down syndrome. Down syndrome has shaped her eyes into an almond mold, made her ears and nose small, created smaller bones and a shorter stature, made her have to fight and struggle for everything she does, it is respsonsible for her inability to walk, created a frustration in her that is intense and stripped her of her confidence around groups of children.

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Down Syndrome is not who my daughter is, it is not a persoanlity trait, it is a barrier that holds my daughter back. Sometimes I imagine having a sword fight with Down syndrome. Although an intangible thing, it is my foe and it hurts my daughter.

I do not love Down syndrome. I am not grateful for Down syndrome. During the month of December, amongst all my joyous celebrations I also wage battle with an enemy.

A battle that Lily and I are determined to win everytime. Lily just turned two and she won this battle over Down syndrome!

Happy Birthday little girl, shade of my heart- you are healthy and beautiful and we love you so very much!

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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…..

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 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.