Month: December 2013

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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…..

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20, 40, 60 and GONE

The single most terrifying moment was about to be upon me.

My dad came over and whisked Lily and I away for a little bit of birthday shopping. Since Lily and I both have birthdays in December, it is easy to get them mixed up with Christmas. He makes sure there is a notable difference and it is becoming a wonderful little family tradition.

After braving the mall two weeks before Christmas, I discovered a little gem of a coat I had wanted for a long time. It was half off! Oh happy birthday to me! We had rented one of those little car strollers from the mall for Lily to enjoy but after a while she was getting bored. So I took her out and sat her in front of a mirror where she could chat with the cutest little girl I have ever known!

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My dad pulled out his wallet and began handing me money. I held out my hand, smiled at Lily and then looked at my dad ……for the count of three. He counted out 20’s and laid them in my open palm- 20, 40, 60… I looked back at Lily and she was GONE.

And I mean GONE. She had vanished. Suddenly the air was sucked out of me, my vision changed to a surreal view of the department store, my hackles raised as I scanned each and every living thing around me. SHE. WAS. GONE.

I hit the floor looking under all the clothing racks and my dad immediately ran the other direction looking for anyone carrying her off…

Frantic cannot begin to explain how I felt. I am actually in tears writing this experience right now (and it ended well). A surge of fury and fear raced through my body, changing me a little- my entire being was tingling. I noticed everything and nothing all at once. I felt like a giant and yet so powerless. As I was about to unleash a primal scream alerting everyone in the store as to my unbridled terror, when an old man touched my arm.

I will never forget the look in his eyes as he said, “He found her.” “Mama, he found her.” His eyes sparkled and I could feel his soul rejoice with the news he was chosen to deliver to me. 

Suddenly everything grew still in my mind and the world played a fuzzy background image to the sight of my dad with Lily on his shoulders.

As you would expect after having such intense emotions rack your body, mind, soul- I needed some release. I felt like I was vibrating.  Only now could I spare the energy and time to cry. And cry I did. After the last tear fell and the last of the terror shook free from my hand, I felt drained and my body went a little limp. My dad, a man who although is very sensitive and passionate, never cries, is never rattled. My dad was shaking. He was breathing heavy and he, like me, was not okay.

We took a moment to just remember how to breathe. Lily was making faces at herself in front of the mirror. She was back in her stroller and safe. SAFE. We collected our material finds and proceeded to check out and then onto home.

I never truly believed when people would say “It only takes a second.” For us it was “20, 40, 60 GONE”. My dad found her 30 yards away. She was having a ball crawling as fast as she could, enjoying her new found freedom.

I share this experience, at the risk of looking like a distracted, bad parent, because I was one, at least for that moment, and because for some, their ending of their story has no happy. We all make mistakes and I am forever grateful that mine wasn’t permanent and this story has a happy ending. Hug your children a little tighter and be safe during the insanity of your life. 🙂 Peace to you all.

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