Wednesday, August 22, 2012

Onto the next stage

There is something about the age of 2. It came with a sense of calmness I can only compare to the still after a storm. And all that I can feel is gratefulness and serene happiness.

I've watched other fellow down syndrome bloggers go through, what I call, the road to acceptance. A similar journey we all seem to go on. 2 is the age when everything becomes good. Not good because we are talking our way through it and hoping for the best, but good as in we truly would not life to be any other way. The last two years, plus however many months I knew Fiona's diagnosis prenatally, were filled with fear, hope, doubt, strength, anger and happiness. I was like an emotional teenager, giving in to whatever feeling rose up in the moment. And just like a teenager, I acted like I knew it all. But, really, I was still just learning. And now it seems that I have graduated on, confidant in what I know but wiser to know there is still a lot more to learn.

Fiona is my professor. Teaching me more about life, God and acceptance then any classroom ever has. I held her close tonight and told her without a smidgen of doubt that I couldn't have asked God for a better baby. My blogger friend Michelle recently wrote a great post about the two extreme outlooks on Down syndrome. From the medical, science and well-to-do world we get a voice of doom and gloom about Down syndrome, while from families with a loved one with an extra 21st chromosome we hear more of a rainbows and unicorns view. This is no facade or lie. Nothing I say is sugar coated or tied with a bow for a better apparance. And now with full honesty I can say I love Down syndrome, I would not want to remove it from my daughter if I could, and she is perfectly made with her mosaic cells of trisomy 21 and normal 46.

Shes walking now. I am still hesitant to call her a Walker, because there is still a lot of the Fiona crawl going on, but my tiny just-over-2-feet-tall princess can walk across a room. Regularly. She is signing. She listens when I tell her "no" or "stop" or "put your hands down" or the most frequently yelled "SIT DOWN!", and she obeys. She plays pretend, loves to brush her dolls hair and attempt to put everyone's shoes on, big or small. She dances her heart out to every beat she hears. She adores babies and dogs, and insists on kissing them both. She barks every time we enter a house, looking and hoping that there will be a dog there. She is talking- quite a big list of words she has- and she whispers them all.  She lights up when she hears her brothers voices and disparately yells for them. She starts calling for Dada the second we turn into his work parking lot. She loves to climb on my back like she is riding a horse, or rest her head on my belly when I am laying down. She uses her whole body to say no, one tiny flailing hysterical mess. She loves meat and hates vegetables ( 100% opposite from her brothers). She likes to do things by herself, even when its something she isn't capable of doing. She tries, and then tries again. Peek-a-boo is a sure thing to make her laugh, so we play that A LOT. She is a climber, and lucky for her she still easily fits into baby things like infant car seats, swings, and bouncy seats so she takes over them whenever we are around babies. Come to think of it, height and weight wise, she probably still qualifies to use an infant car seat. She is amazing. Vibrant. Loving. Sassy. Smart. Kind-hearted. Gentle. Determined. Inspiring. Perfect.

photography by Sean Ocean

Happy Birthday, our fighter. We have been through more with you in your 2 short years then we ever would have imagined, and are excited to keep riding this roller coaster of a ride with you for many more years to come. The lows may be low, but those highs? There is nothing higher. Keep rocking your one precious life, Fiona Hope.

Lend me your eyes, I'll change what you see.


  1. lovely words & pictures. You're amazing Fiona!! xoxo

  2. Happy Birthday Fiona!!!! Just wanted to say the first picture caught my attention right away...the first thing i see is her chewing on her hands EXACTLY like Avery...and i can only tell you what i have found out from everyone else..She is doing it for sensory input..and her Speech therapist told me to use the "T" rubber tool..and what u do is put it towards the back of her mouth and tell her to bite..and do that like 15 times..then repeat with the other side..and do this many times throught out the day...and eventually she will stop...i cant tell u if it has worked for us or not bc we are still working on it..but Avery is 5 now and i never really paid attention to it when she was younger but now that she is older i notice it more and it drives me matty...ha! bc it has gotten worse..anyways i just thought i would let you know..i really wish someone would of told me a long time save me lots of time searching for help to fix it..

  3. Beautiful post, and I LOVE the pictures! Fiona is adorable!!! Happy Birthday to your sweet girl :)

  4. Carole ( 23, 2012 at 9:51 AM

    Hello Shannon,

    my name is Carole and I'm a 27 year old teacher from Luxembourg. I somehow stumbled upon your blog today and spent the last hour reading it. I had twin boys, too in March. They're the biggest blessing I could have ever wished for, life with them is so beautiful. I can totally relate to everything you've written about your boys in your "double trouble" post.

    However, Down Syndrome and also MDS have been an issue at our house too. When the boys were 2 months old, I noticed that one of them had a simian crease in the palm of his right hand. Having just read Kelle Hampton's book "Bloom", I knew what it could mean. So I talked to our pediatrician, who calmed me down by saying that our little one didn't have any other markers for DS, and he also explained me what MDS was. He offered me to do some testing on my baby, but my husband and I declined. I googled the subject and read that there are many people out there with simian creases without having DS. My boys are now almost 6 months old and they're developing in exactly the same rhythm. I don't know what the future holds for us, but as long as there is nothing to worry about, I don't wanna know.
    I've become extremely interested in DS and MDS though, so I will continue reading your blog.
    Happy Birthday to your sweet girl!

  5. Happy Birthday to your beautiful girl...

  6. Oh my goodness, she is absolutely adorable! Those pictures of Fiona are just beautiful!! Happy Birthday, little one!! :)


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