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 20: Don’t Eat That! It Might be Poison!

Lily used to be a wonderful eater…until she became a toddler and now she reacts like we are poisoning her!

When Lily was 3 months old, we learned that because of her low tone (on the inside), she was aspirating my breast milk into her lungs. She also was diagnosed with acid reflux. We had to add a thickening agent to her milk (which meant I could no longer breast feed but had to exclusively pump) 😦 and she began medication to treat the reflux. Both of these issues would begin to resolve as she got older, stronger and bigger.

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At 6 months old she had her very first bite of food- PEAS! After that bite, a whole new world had opened up for her and she eagerly stepped into it. She enjoyed all flavors of food….

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….with the exception of squash- not a fan of squash.

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With her first birthday came the extinction of bottles and baby food. My big girl was now drinking whole milk from a straw cup and eating table foods along with us. How exciting! She was really turning into a little girl now.

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Still not a fan of squash.

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At about 18 months, she learned she could spit out her food. Even more fun, she learned if she spit it out on the floor then Molly would eat it. Much to her amusement and my dismay, a new game was invented! She also began to throw her sippy cups to the floor (spilling them- even the spill proof ones spill!)

Just when we our teachings of “set it down” were taking effect and the random flying of objects ceased- she decided that she was ready to be INDEPENDENT.

Now it is a HUGE cognitive development when toddlers begin throwing tantrums and want to do things their way. So as much I am thrilled that Lily is experiencing this, I want to run to the nearest island for a break!

Here is her progression with eating: First she refused all food the first, second and third time. This included yelling, turning her body around and even trying to run away (when she was not in her chair). Next she began sniffing and licking her food first (testing to make sure we aren’t trying to poison her)  Then she would only eat food placed exactly where she wanted it and had to feed herself.

So we introduced utensils. Now she had been introduced to a spoon and fork before but this time was different. This time she learned how to use them! She loves her fork! She has mastered the art of stabbing items with her fork and makes it to her mouth every time. Next came the spoon, she did amazing with the spoon- I was so proud of her!

Before my eyes my little girl just grew up a little more. I forsee many more food messes, meltdowns and hunger strikes in our immediate future but she is on the right path to feeding herself and my eyes rain with joy!

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Now the important Down Syndrome Awareness Month (DSAM) message for the day is this:

Lily is just like every other toddler! Lol. She strives to be independent, is demanding, yells when she gets frustrated, and makes huge messes when eating. Yes, its true she must work harder to eat due to the lower tone of the mouth muscles and sometimes gets lazy with chewing but she is more alike than different ❤

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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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Welcome to Oz

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When my daughter was 6 months old, we began planning for our second child. Because of how long it took to get pregnant before, we thought we should start early just in case. Turns out that the rumors are true- you are much more fertile the second time around- it only took 3 months to fall pregnant with baby #2!

I found out I was pregnant 5 days before we moved into our first house, we were so glad we chose to buy the 3 bedroom instead of the 2 bedroom! As James skipped out of town on business, I, once again, was left to move all of our stuff while pregnant. (I am not a fan of this trend and will have make sure to break it when baby #3 is on board).

They say no pregnancy is ever the same- not between you and your friends and not even between your first and your second. I found this to be true. My pregnancy with Lily was pretty easy physically but hard emotionally. This time proved the opposite.

Everything seemed to happen much sooner this time around, the fatigue, the sickness, various pains and even the baby bump! Although I entered into this pregnancy with much greater confidence than my last one, I still became petrified before each dr appointment. Will they find the heartbeat? Is the baby growing?

A truly miraculous thing occurs when you are busy chasing around a 1 year old, time passes by quickly.

Before I knew it, I was out of the first trimester and speeding head long into the second. When I first became pregnant, the burning question from every one was if we would do the testing for chromosomal disorders. As you remember, we didn’t with Lily. Since Lily has Down syndrome, our risk for having another child with DS automatically goes up to 1/100.

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This doesn’t make a lot of sense to me though. The type of Down syndrome that Lily has, is not hereditary. So why then are my odds automatically increased? Regardless, we chose to decline testing this time around too.

Our 20 week ultrasound was a huge marker for us. This is the day we not only find out the gender of our baby but if there is anything noticeably wrong. This was the ultrasound that changed our lives forever just a little over a year ago. And I had to brave it alone.

The first thing I did was inform the ultrasound tech that I have a daughter with DS and we had so many troublesome ultrasounds with her, that I am a PRO at reading the face of the tech. So please be upfront and honest with me, if you see anything wrong. She must have liked my candidness because she had no problem with what I said and was very explanatory during the entire ultrasound.

Including the part where she said, “Hmmmm hang on a minute.” and “He has a shadow at the base of his spine.”

You have to be kidding me. Whaaat??

I was then referred for a high definition ultrasound. Before I left my ultrasound, I spoke with my dr. he reassured me that he didn’t believe it was anything but wanted to be sure. Although I was inclined to believe him, I still traveled home with a heavy heart.

I revisited some similar thoughts I had from a year ago- only this time it was different. This time I knew that things were not always as they appeared and that through the fear of the unknown lies an incredible blessing.

That evening was not a depressing one, quite the opposite! I had the tech put the gender of our baby in an envelope so that James and I could learn about him/her together. So at dinner, we gave the envelope to Lily, to open.

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The anticipation was mounting as Lily tore open the envelope. Did we want a girl or a boy? A brother or a sister? I thought at first another little girl would be better because sisters close in age could be close and fun. I also thought that having a boy would be so exciting.

As the little piece of paper appeared from inside the envelope, James smiled big and said “BOY!”.

My heart soared with excitement. I was going to have a son! A little boy to fit in so perfectly with our daughter. It was at this moment I began to really bond with the little soul growing inside me. He had an identity. He was my baby boy!

The next week brought the high definition ultrasound. This time I was joined by James and Lily. James and I shared an all too familiar look of love, fear and faith as I laid on the table.
And suddenly there he was, my son. He waved and looked at us, his picture crystal clear. Despite the anticipation, my heart filled with love and warmth. Even Lily smiled at the monitor!

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The ultrasound tech spoke easily with us and as she referenced his spine, she said “I see nothing abnormal.” Since the picture was so clear, neither did I. Flooded with relief and gratitude, I finally felt enjoyment receiving an ultrasound.

At 27 weeks, I was wheeled to labor and delivery to get checked out as I was having contractions. I was nervous because I didn’t know I was in labor with Lily and her heart rate was plummeting with each contraction. Would it be the same with my son? Is he okay? I could feel him moving. After being hooked up to the monitors, they validated that I was in fact, having regular contractions but I was not in labor. More importantly, my son was just fine! I got to home just a couple hours later.

The rest of the pregnancy became filled with strong kicking, lots of weight gain 😦 and massive hip pain! Once I hit 36 weeks, I celebrated. I had now made it farther than i did with Lily! I may actually make it to full term!

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I began to get excited as I assumed I would go into labor any day now. I didn’t believe I could carry to term even though I wanted too. Soon my excitement faded as I entered into my 38th week. Now I began to understand why so many of my mommy friends would exclaim that they were done being pregnant!

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Just when I thought my belly couldn’t stretch any farther and my hips couldn’t handle the pain any longer, I woke up in labor.

Wednesday, July 3, 2013 I woke up a mother of one and a family of three and went to bed a mother of two and a family of four.

Labor still eludes me a little bit- my contractions are so different than what I thought they would be and I have learned twice now to follow my gut on whether or not I am in labor. I simply felt sick and crampy. I had my grandmother come over to help with Lily and James left work early to take me to the hospital.

I was scheduled to have a repeat c-section on Friday, July 5. I figured I was probably only in early labor and they would send me home to wait til Friday. I have always believed that everything happens for a reason, and here is yet another example: No one showed any record of my scheduled c-section. Somehow, although planned back in April, it never made it to their books. Let me just say here, that I found it very strange to “plan” my child’s birthday. This is something one is asked to do when having a schedued cesearan, I learned. After waiting a couple of hours for my dr, he appeared and said that since I am in labor, would I like to go ahead and have this baby tonight?

Um….yeah! Although I was only 39 weeks on the dot, I was so over being pregnant.  Since my son was doing fine and not in any distress, everything moved at a much calmer pace than with my daughter. I chose 6pm as a good time to deliver. This gave me a little over an hour to mentally and emotionally prepare to meet my little boy. Or so I thought….since Lily was an emergency, I didn’t notice all the prep work that was neededbefore surgery. I was moved to my room where the anastethiologist came and hung out with me. She was very sweet and comforting. My nurses came and went, placing my IVs, bringing in the baby’s stuff, shaving me (soooo uncomfortable and awkward!) and even bringing me a charger for my phone! Then it was time to go to the OR. But wait a minute, I hadn’t had time to prepare!

I thought that I wouldn’t have any anxiety this time around. After all I had been through this before and this time was so much calmer and relaxed. But surgery is surgery and I soon found myself shaking and wanting to run away. I told the anastsiologist that I was starting to panic. She handled my anxiety so well. After she administered my spinal and laid me down, I finally got to see the one face that would hold me together, James. And it was his face and the touch of his hand that prevented another anxiety attack when my blood pressure dropped and the meds made it difficult to breathe for a minute.

After a small eternity, the surgeon told the nurses to lower my drape and told me to peer over. I had every intention of looking at myself cut open (the biologist in me couldn’t resist the opportunity) but my thought was interupted by an abrupt cry. As I gazed over my drape, I laid eyes on my son. I am incapable of depicting my feelings in that moment. They were so much beyond joy and love. He was huge! And he had lots of brown hair! I wanted to reach out and grab him and hold him close. It was like seeing a piece of my heart manifested outside my body and wow! I mean wow!!

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Very shortly afterward, James brought him over to me and I got to touch him and kiss him. Since there was no rush to hurry him off, I soaked up the moment. Then James took him out the door to wait for me while I was being put back together. Finally after what felt like forever, I was wheeled into my room where my husband and son were waiting for me. I immediately put him to my breast and he nursed like a champ!

He was here. He made it. He was healthy and beautiful and he was mine!

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Roses are Red

Roses are Red

Roses are Red

Violets are Blue

Worry not mama

The world loves Lulu.

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“Every parent wants to know that their child will have friends and find love…. The truth is that regardless of how many chromosomes one has, you will get your heart broken and you will fall in love and you will have that love returned. I will forever stand beside her, supporting her and loving her through all the trials and tribulations life throws at us.”

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I wrote that a year ago. In this last year I have bore witness to many amazing things. None have been so powerful as watching how freely Lily expresses herself. She smiles with her whole body. When she is sad, the whole room weeps, when she is happy, she lifts every ones mood. And when she hugs you, you feel like the most special person in the world.

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Lily has friends. Correction, Lily has lots of friends. She has friends with disabilities and friends without. She helps care for babies (like her brother), she plays games with friends her age and is even welcomed by kids much older than her to join their activities.

Lily has friends. Lily is loved.

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Her road will be different and her future uncertain, but Lily IS loved.

“Sticks and stones will break my bones but words will never hurt me.”

If only that were true.

 

I have always been a sensitive person- I try to be empathetic to others, am careful how I speak to people and treat others with respect. That was how I was raised. I think because of this, I have never been terribly offended by others because I can find empathy for their ignorance. When I first met Lily some of that changed.

First of all, becoming a mother made me more sensitive but less tolerating. More patient but less accommodating. More appreciative of life but less comfortable. Becoming Lily’s mother has made me more vocal, social and somewhat confrontational.

I am many things but one of the more important things I am is an ADVOCATE.

A majority of people with Down syndrome are classified as mentally retarded. Meaning their IQ is under 70 and they will need help navigating life. The word retarded may bring up several different images in your mind. When I first learned Lily will most likely be retarded, I thought of someone with a distant gaze, their mouth hung open and drooling. I have since learned that retarded can mean many things from my image to someone who needs a tutor in school to someone who just doesn’t have the ability for abstract thought.

I have also learned what retarded is not.

Retarded is NOT – someone behaving badly/ someone being silly/ someone making a poor choice/ etc.

Not many things offend me, but I am a mother to a little girl who will be retarded in some form. Can you imagine how I must feel knowing that?! How difficult it is to see her learning her colors and animals and in the back of my mind there is this dark cloud of knowledge that she will struggle with learning? How painful not knowing how this will affect her in life? Now imagine hearing people use the word retarded to refer to something foul, horrible, or annoying.

There have been a few words that we as a society have erradicted from our language and I am ready to see the casual, off-handed use of this one gone for good.

Understand that I know ‘what you mean’ and I know ‘you weren’t talking about Lily’ and I even know ‘that its just a word’ and ‘not personal’. But you should know that I am an ADVOCATE. Every time people misuse that word it creates a bias against my daughter. Most people will do anything to protect their children and I am no different.

The way you speak carries more weight than you realize and leaves a lasting impression on society as a whole.  Speak well – Lily is watching.

 

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What’s In A Name?

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As a biologist, I spent several years learning the names of things and more interestingly learning that most things are named after the people that discovered their existence. This made for some very tough spelling challenges along my academic path! When I first heard the reference, Down syndrome, I wondered why is called ‘Down’?

For centuries, people with Down syndrome have been alluded to in art, literature and science. It wasn’t until the late nineteenth century, however, that John Langdon Down, an English physician, published an accurate description of a person with Down syndrome. It was this scholarly work, published in 1866, that earned Down, the recognition as the “father” of the syndrome. Although other people had previously recognized the characteristics of the syndrome, it was Down who described the condition as a distinct and separate entity.

To say that Lily is a Down’s baby is actually incorrect- she is not Dr Down’s baby- she is all mine! J

Once Upon a Time….

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There is important talk about inclusion with children with special needs in mainstream classrooms. (I will talk more about that on another post) Even though Lily does not attend school yet, she has many activities she attends and all with other kids her age, not her disability.

Her current favorite activity is reading her picture books. She can thumb through each page and happily points to different items asking me, “What’s That?”. She varies from saying the word to making the sound that goes with the picture and sometimes will sign as well.

Every Wednesday we go to story time at our neighborhood library and Lily gets to check out new books to bring home and play with her friends. Now that Oz is attending story time with her, she enjoys reading books to him at home. Only this time she doesn’t bother asking him. “what’s that?”- she just tells him!

Lily also attends a museum babies class at the Gilcrease Museum, painting classes and music classes held at various libraries and a host of play dates! She receives no special treatment and always enjoys herself!

 

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10 tiny fingers, 10 tiny toes, little ears and little nose….

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There are physical characteristics that can go along with Down Syndrome. Wider set eyes, lower set ears, shorter nasal bone, single crease on the palm, etc….are all identifying marks of DS. What you don’t see are the internal characteristics. These include smaller canals in the ears, small nasal passages and sinuses, higher than average palate, etc. This increases the chances of respiratory sickness in people with DS. They are more likely to get pneumonia, colds, bronchitis- those sorts of illnesses.

Lily has had pneumonia twice (once due to aspirating her milk) but has been extremely healthy otherwise. In February of last year, she failed her hearing test, missing the low tones. They discovered she had fluid in her ears which without tubes, would continue to build up and cause speech delays and even deafness. So we joined the ENT surgery club. Lily’s surgeon also wanted to remove her adenoids because it is very easy for them to block the ear canals creating trouble.

After much research (even outpatient surgery is not without risk) we prepared ourselves to allow our little girl to be put under anesthesia and have the tubes placed and the adenoids removed. We had been through so many scares with her that we weren’t necessarily scared but it is a little known fact that I have some control issues (I know, shocker!) and I had a very hard time just turning her over (passed out from the goofy juice) to a complete stranger. I am sure my friends that have had to endure so much more intense surgeries with their children are rolling their eyes at me right now but for that 20 minutes, I couldn’t even sit down I was so ready to run back to her! Lily did very well and was back to her normal self by that evening only now she could hear even better!

As she gets older, we begin to see her change from a baby to a little girl and that includes seeing the characteristics of Down syndrome emerge more and more. After she turned 1, people outside our circle began to ask if she had DS- at first I was taken aback. I wanted people to see her for her not just the DS. However, as I gaze at my daughter, I realize that her appearance is a beautiful blend of the DS traits and  us. I don’t think Lily is cute or pretty. I think she is stunningly beautiful. A truly unique masterpiece.

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Happiness Is….

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Happiness is a beautiful fall day and time off to enjoy it. Happiness is a hot cup of coffee, a great book and a comfy chair. Happiness is the birth of your children. Happiness for Lily is finding Elmo in the pages of her book, matching the right colors together, getting her puzzle piece to fit on the first try, hugging her friends and receiving one back, fitting all of her animals into her little toy barn, sneaking food to Molly when she thinks I am not looking.

Happiness is not Down Syndrome.

The most bizarre misconception about DS is that people with DS are always happy. I have lost count how many times I have heard this and most of the time it is the first thing people tell me about what they know of people with DS.

I will be honest, those of us with children that have DS find this to be most irritating. Speaking only for myself here, it feels like people are trying to give me a consolation prize. Almost to say that since you couldn’t win the ‘normal’ child at least they will always be happy and a joy for you. Whaaat????

What is really puzzling is to hear this from people who claim they used to work with people that have DS. There is no way someone who truly knows a person with DS can honestly think this. Unfortunately, DS does not give one super powers and does not alleviate the human condition of emotion.

Although I would love to spare my child the emotions of sadness, rejection, defeat, despair, heartache, etc, she wouldn’t be human without them and at the end of day, even people with Down syndrome are human. 🙂

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