Sunday, March 27, 2011

Magic

The boys found my old Barbie dolls today. I had saved a few, after helping my dad go through all of our stuff when he moved, and they have been tucked safely away in a drawer in Fiona's closest. The site of my boys with dolls always evokes feeling of, "this is not right". But they are two, and I am trying to promote them to be creative. Cars and trucks go " vroom", pretty straight forward, but dolls you have to make up stories about what they are doing. And that's exactly what they did. They made them walk and talk and entered into the magical world of make-believe.


This was a world I was very familiar with.  And as I watched my boys drift off to that place, a flood of my own childhood memories came rushing in. As clear as day, I saw me and my childhood best friend, Jaclyn, sitting on her bedroom floor, barbie dolls and clothes thrown all around. I remember her blue and green bedding, and the sound of the creaky wood floors in the hall way. And for a moment, I truly remembered being in our make believe world. As a kid, it felt real, like speaking our made up stories out loud made them real. I remember our adventures in the "river" behind her house, and the feel of the squishy creek mud devouring my bare feet, searching for clay on the bank and making up wild scenarios of bad guys and obstacles and prince charming.

A child's mind is one of the most beautiful things. Its a clean slate, itching to be filled with knowledge but free from judgement, caution and seriousness. The world is their oyster...so eat up sweet babies.

Sporting their new haircuts, because although I love their wavy long curls, lets face it... I am a hairdresser and love to cut hair! And I love my husbands mini-mes.

The thought of me-verse-three at a county fair, with hundreds of people, sticky food and a scorching hot sun was not enough to keep me from me doing it anyway. And, thankfully, I wasn't really alone. My mommy paparazzi partner in crime joined me with the "original" Fiona and little Piper. We were some sight with our cameras over one shoulder, kid on the other, pushing strollers and stopping every 5 feet to help a little one. But its all worth it when you look at your sugar comatose, cotton-candy faced kid. Its worth the whining in between the smiles. 


                                                               
Monkey face!















  







And while my boys are exploring the big world around them, Fiona is our little rollie pollie, and has explored every inch of our living room floor. 9 times out of 10 she ends up here...



Its, of course, the one place in the living room I cannot see when I am not in the living room. Doesn't matter where I place her on the floor, she rolls her way to this little corner. Her father, just places her in a basket, as I learned today when I found this picture on my camera.


Or maybe, by that surprised look on her face, she got in there herself and got caught in the act. Fi is really coming into her little personality now and I love it. Her laugh is addictive and I will go to extreme lengths to get my fix. Lately, its been a lot of bouncing... and Bipity-bopity-boo, thats the key phrase. A Cinderella princess after my own heart. Gosh, I love her!



Friday, March 25, 2011

Cookie, please!!!

There is a major mom-verse-kids food war going on in my house. Simultaneously, we have hit two stages were neither baby nor twins wants to eat.


For the last month we have been trying to introduce solid foods to Fiona with no luck. There have been the occasional mommy victory, where she eats a bowl of rice cereal (and by bowl we are talking maybe two tsp tops) or a good five spoonfuls of sweet potatoes. I have tried everything, heating-cooling-room temperature, runny-thick-mushy, homemade and store bought. She spits it all out. Her old white casts have orange splatter stains from her blowing raspberries mid bite of mushed carrots, so it seems we have an extremely picky eater on our hands. Quite opposite from how our boys were.



From day one of introducing "real" food to my boys, they loved pretty much everything. I think bananas was the only thing that took getting used to because they were so slimy. And vegetables, well those are like desert for them. My boys love greens. If you put steak and lettuce on their plate, they will eat the lettuce. Eating healthy has never been an issue, but eating substance has. And lately we have entered the toddler phase, "I don't want anything but cookies and popsicles" First thing every morning, I am greeted by Breiden with, "pur-ple pos-i-cul", and Gavin has mastered the puppy eyed looked as he sweetly looks up at me and asks, "cookie?". Meal after meal goes hardly touched, and I cringe as I scrape our hard earned money from their plates down the garbage disposal. Its just their age. I have talked to moms who swore that if it weren't for milk, their kids would not lived through the toddler years.


There was once a point and time that I enjoyed a good meal. But food has become merely a part of my survival kit. Ever since having Fiona, food just doesn't stir up excitement- my taste buds seem to have gone on strike and don't care to work anytime soon. But more likely its that I don't take the time often to make a good meal for me. Cooking needs to be quick for me to be able to.do it, and the quick meals are either plain and over used, like spaghetti, or expensive like seafood. Spending money on good meals is such a waste when my kids throw more then half of their helpings in the garbage, and there is no way I am making separate meals for them and us all the time.

With Fiona, its nice because she has such a good team helping her. I can just call her speech therapist and she'll come teach me how to get my peanut to explore her taste buds. (Which is in the works in the next few weeks) But the boys, this is a phase that I can only pray they will grow out of...quickly. Its not like they are being picky, they just aren't eating period. Even when there's no cookies or popsicles, they still don't eat their meals. So if anyone has some good cheap, quick recipes that are kid friendly, send them my way! Maybe mixing in some new meals might be exciting enough for my kids to actually eat.

Tuesday, March 22, 2011

Honestly crazy

I feel a little out of place in the Down syndrome community and I have been struggling with that lately. No one knows Fiona has DS. Excuse me, let me rephrase- no one looks at my daughter and thinks " She has Down syndrome". I find my self in a limbo, that I poured my soul into loving this community but we don't look like we fit in. Kinda ironic, that I am sad my daughter doesn't look different enough to fit in.


I have mentioned before my original pain of her diagnosis was a shallow one. I didn't want her to look different. The heart and feet could be fixed, but there is no fixing the look of Down syndrome. So when they held Fiona for me to kiss her soft, fresh cheek for the first time and she looked "normal", I was surprised to find myself desperately searching for almond eyes. (which she does have, though they are not that predominate) And as day after day, I have to repeat, " I know she doesn't look like she has Down syndrome, she has a rare form of it where not every one of her cells acquired the extra chromosome" I feel like people think I am crazy. Why am I such a big advocate for Down syndrome when my daughter seems "normal"? And who am I to be encouraging people to keep their baby because not everyone's story turns out as positive as ours. There is a very wide range of how Down syndrome effects a person, ranging from highly functioning to severely mentally handicap. We seem to have fallen barely even on the line, holding onto the very tip of highly functioning and even hanging half on the normal spectrum. And I often say how much of a blessing this is, but we are just blessed to have Fiona in our life, and I would feel that way even if she fell somewhere further down that spectrum. I see DS in my daughter because I look for it. But to the common onlooker, she is just a normal cooing, laughing, sitting, rolling, big blue eyed 7 month old. And wasn't it always my prayer that that is how she would be viewed? So why do I feel a little sad that people don't look at her and know she is special. If it weren't for strangers prying so much, "O, she is soo tiny for a 7 month old!" which I feel the need to defend her by informing them, " She was born with a heart defect that she recently had surgery for" which then is followed by all the pity and questions and the easiest way to explain why she had a heart defect is just to say, " she has Down syndrome". Que the, "Oh? She doesn't look it at all? Are you sure?". Am I crazy to feel out of place with a daughter who is typical, just not for her label?

I hated the attention the twins brought me. I do not like being in the lime light. I love writing here because I feel comfortable talking to a computer screen, but I used to pray strangers didn't talk to me in the grocery line. And I remember thinking, when learning that Fiona did have Down syndrome, crap, strangers are going to see shes different and  feel the need to talk to me  like they did with the twins. " Are they twins?" "Is it a boy and a girl" (Um, no they are both in blue) " You have your hands full!". I am shy by nature. But I have come to the realization in the last year that maybe one of the reasons God gave me high risk pregnancies and children that draw extra attention was to push me out of my comfort zone. I have learned that really opening up to people is freeing. That making eye contact with people makes me smile more in a day. And when person after person would peek around the stroller and see my beautiful girl for just that, I found my self sad she wasn't more of a conversation starter. A few would notice how small she was for her age and, now that she has casts, we get all kinds of inquirers. My favorite are the people who gasp and ask what horrific accident she went through at such a young age that broke both of her legs, as she is happily kicking her casted legs against the stroller. But no one, not one person has ever looked at her and questioned if she was different. Not one look of surprise- they saw exactly what they expected to see when they look in the stroller, a normal baby.

 I've wrestled with my odd reaction over and over- I am trying to label my daughter. I want her to fit in somewhere. I want to fit in somewhere. But she doesn't fall into any label, she is just Fiona. Excuse me, let me rephrase, she is the amazing, unique, strong, beautiful, perfect Fiona. Whether she looks it or not, Down syndrome is part of her uniqueness. And its a piece of the puzzle that makes up this family. I want people to know her for her and not as "the girl with Down syndrome", but she is doing a better job then me in proving her awesomeness- I am still getting stuck on her little diagnosis. I have fallen head over heals with this special almond eye community. And I will continue to be an advocate for them, even if we may not be a typical example of what life with Downs is like. And I will continue to encourage expectant parents to take the road less traveled and embrace the gift- the blessing- begging them to accept them into their family because everyone has potential. Some more then others, but no testing can tell you how amazing your child will definitively be. And your puzzle will never be completed if you throw away one of the puzzle pieces.


My shallowness sometimes scares me. As a Mosaic Down, we do not know which cells carry 47 chromosomes and which don't. We know things such as her heart and her feet where affected by Down syndrome, and that her facial features were not as much. But the way she looks is no where near as important as her health. Cognitively and health wise, we could be dealing with a more severe place on the spectrum. I would rather my daughter have a healthy heart then to look like a normal child and I am ashamed by my initial ignorance.

With the fundraiser and World Down Syndrome Day, I am sure I have Down syndromed everyone out. I am trying to drop this label I have unintentionally given my daughter and working on not trying to make her fit into any one box. It might ocassionally come up, as we celebrate a hurdle jumped or are working on picking a knocked over hurdle back up for another try, but I think its time to start concentrating on other pieces of our puzzle. Starting with the mom-verse kids food battle.

Monday, March 21, 2011

Our 3.21

Did I ever mention that our amazing, wonderful, loving friends did a charity golf event back in September to help cover Fiona's medical bills? It happened to be on a weekend when we were back up at the hospital for Fiona's little blood oxygen level scare. Also, at the time when my computer was not working, so I was not blogging as much. The outcome was overwhelming and the number of people who cared for our family blew me away. We have been blessed with support in every area. So why I am I bringing this up now? Well, for one because since I missed the golf event, I wasn't able to get the addresses of everyone who attended and I have a stack of thank yous waiting to be sent that are now outdated. So, for anyone who didn't receive a written thank you, that happens to read this, send me your address... and thank you from the bottom of my heart! The other reason is that a very large bag of Down syndrome bracelets sits in our cabinet. A bag of bracelets that came the day after the event that we had bought to give to each participant. My husband and I wear one everyday. And we have passed some along to friends and family- Fiona loves to play with and chew on our bracelets, so it has also come in handy as an emergency peace-making toy.


Today, my husband went golfing. He took with him a handful of the bracelets and passed them out to everyone he came in contact with. That's my husband- Mr. Outgoing. I love this about him. He is truly my other half- my outgoing half. We fell into parenthood unexpectedly, and were not given an easy road. But he impresses me everyday with how gracefully he slid into the position as the head of our household. He is our rock. And I melt when I see him with our kids. Especially Fiona. My handsome, cool, life of the party husband turns into the most tender, caring, protective, proud man around her. He is sooo proud of her. And while I shout it from the computer, he shouts it from the roof tops. Because he is that kind of guy.



Well, today, I got pushed out of my comfort zone. Today, I had to use my voice (which came out sounding like a 12 year old girl) and speak my words from the roof top- or more over the airwaves. NDSS came to me about a week ago and asked if I would help promote their My Great Story campaign in the SWFL area. I quickly said YES! and was ecstatic to help them in anyway. But as I sat in the waiting room today of the radio station, the butterflies found their way to my belly. And I swear you can hear them fluttering if you listen closely to the broadcast.

Fiona was a rock star for her first live public experience. You can hear her chatting up a storm in the background. We were joined by Dr. Brian Skotco from the Boston area, a children's cognitive development specialist who helped fill in the more scientific and statistical information. It was an exhilarating experience that I am proud that I did for our daughter. She, of course, wooed everyone at the station.

The rest of the day was spent letting the butterflies find their way out of my stomach and just enjoying yet another beautiful southwest Florida day. Ice cream, burgers (um, in that order), a long walk to the other side of the mall in the warm sunshine and over bumpy boardwalk bridges (love the outdoor malls) and looking through Thomas the Train books with my boys. Soaking in the toddler conversation and my princess's beautiful smile. You know, just another normal day.









A year ago I was nursing the freshly opened wound of Fiona's diagnosis. Reading, researching, learning, growing (figuratively and literally). And what I found was that there really is no easy road in life. No one gets handed a perfect hand. Some are slightly more difficult then others, but it doesn't matter what hand you get dealt, it matters how you play it. And I think we are making the best use out of ours. My eyes, my arms, my heart are open. I love stronger, feel harder, and care deeper then ever before. 






I was asked today what I want for my daughter. The same thing every parent wants for their child. For her to reach her maximum potential. And just like any good, loving parent, I will teach her, encourage her, and push her to be the best Fiona she can be. Each day, she becomes more interactive with her big brothers. I thank God that he gave me them first to be her guidance in life. I watch her eyes follow their every movement, just absorbing each thing and I know shes learning. Soaking it all in till the right moment when she discovers she can do it just like her big brothers. "I will do it as you do, just at my own pace"- unknown


To hear the radio broadcast, go to the Radio section at the top of the blog. We are the second part of the program.
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