Tuesday, July 31, 2012

Fred's

I have been meaning to go to Fred's since the first time I heard about it, but today I actually remembered it was Tuesday before the day was over and made it there. Its a local restaurant that does a dance night, specifically for people with special needs, every Tuesday evening throughout the summer.

We got there when it supposedly started, which after almost 7 years now of living in Florida, I should know better. Nothing starts on time down here and everyone is always 10-20 minutes late. We were the first ones there. I sat down with my mom and my kids in the largest booth, right by the door and chatted with the waitress, amusing my kids with chocolate milk. From our prime location, I watched as family after family finally arrived, and almond eyes filled the room. I also watched as each one looked at our crew, searching for our connection to the group, and seemingly were puzzled why we were there.

A few looked extra hard at Fiona. I could see what they were thinking. The "maybe she has it... I can't really tell".

Its the one thing about mDs that gets to me. The irony of it all is that I PRAYED for this. I prayed that she would not have physical markers of Down syndrome, because at the time, in my mind, I was praying for her to be beautiful. Now not only do I know how ridiculous that is because my breath is often taken away by the physical beauty of those with an extra 21st chromosome, but I also feel cheated Fiona is left in the middle... not normal as far as normal standards and not normal as far as Down syndrome standards.

Once the music started and we hit the dance floor, all these over-reading-into-it thoughts faded away as the special needs community does what it does best... includes. With the security of my kids in arm, I danced to the point I had to search for a hair tie because I was dying from heat, something I would not normally do. Normally, I am super self conscience... I am the lame one who sits at weddings and watches everyone else dance. But not tonight. Not with this crowd. Because no one was watching anyone else. No one was judging or trying to be cool. They were simply enjoying the music and dancing with the moves that God gave them, and I was enjoying my kids and my friends. I stopped worrying if people knew or didn't know if Fiona had Down syndrome. So what if they didn't think we were part of the special needs group. We were having fun and enjoying company, simply because we are all humans, not because of our abilities or disabilities.

Me dancing with my girl and my boys attacking Kelle Hampton, who made me aware of this local event on her blog.
I know its crazy that I wish Fiona looked more like she has Down syndrome. But I fear that as she gets older and her behavior or development is off, that she will endure a different kind of ridicule. I fear that more people will be apt to call her out or make fun of her differences, where as if they could look at her and see her disability that they would more likely have an understanding and keep their mouths shut. Sometimes I feel like my thoughts just loop in a continuous circle. I don't want people to see her as different, but yet I do. I do not want her to be treated differently, but yet I do. I don't want people to look at her and stereotype or make assumptions, but yet at the same time, in a certain way, I do. It truly bugs me when I have to defend that she has Down syndrome. Mainly because it forces me to point out everything that is "wrong" or different about her, and I am forced to say things that I am fighting in my mind. Things such as explaining how certain things in life she may not be able to do because of hypertonia but yet I want to always believe and help her to live life like its limitless. These are things that do not matter on a day to day bases... things that seem so trivial in daily life, really non issues until you line them up and compare them to "normal".


I love looking through all the pictures on the different Down syndrome groups I am part of. Particularly IMDSA's. I look through the pictures and see, not only the grand spectrum of what Down syndrome looks like, but more, little girls that look just like their moms, or siblings that are undeniably related. When I used to pray that Fiona would not have many facial markers of Down syndrome, I feared not only of her not being beautiful, but her not looking like me. And she doesn't, but neither do my boys because my husbands genes are so stinking strong :) She is her fathers daughter, 100%... the triplet born two years and two months after her brothers. She is undeniably part of our family, even with her slightly almond eyes and low set ears (ears that are huge just like her daddy's).



The picture above is one of my favorite pictures of Fi. I feel like it captures everything about her. Her sweetness, her beauty and her Down syndrome. I remember being told when I first got her diagnosis how cute and amazing kids with Down syndrome are, but I really didn't believe it till I saw my baby. I hope that Fiona and our family can help show others what I needed personal experience to learn. She has taught me more about life then any text book possibly could have.




Tuesday, July 24, 2012

Floating

I have felt like writing all day. No topic in particular, just witty sentences or "brilliant" realizations kept coming, and I needed a creative outlet. But I am trying this thing called prioritizing. And writing to let go of some creative juices is not one of them. Quality time, obligations and even the dreaded cleaning are. And now that all that is done (floors scrubbed and all), nothing is coming to mind. So I have no idea why I am writing other then I had planned to all day.... writing for the pure pleasure of it.

Summer kind of felt over when we got back from up north. Only the sticky, miserable Florida heat lingers to remind me of our somewhat distinguishable season. I am ready for school to start, for routine to set in, and for holidays to look forward to. Oh, and yes, cooler breezes so we can play outside before 5pm. We have been enjoying sporadic evening trips to the beach. Something that I always talk about doing and actually have been doing. Worth every spec of sand in my car.




I am thoroughly enjoying my new walking buddy, looking down to the top of a golden blond head of hair, a small pudgy hand wrapped in mine, and stiff Frankenstein legs forcefully moving forward. So close, baby, so close.


Ever since I first listened to my little girls perfectly beating heart, I have been waiting for the other shoe to drop off. We have been hospital free for so long, pain free for too long, our bad news bucket remains barren. I walk taller each passing day with positive strength looking up, but a small part of me still fears the next set of bad news, whether that be with Fiona, one of the boys, my husband or my self. Its been a long time since life was continually this good. Healthy, happy, thriving good. I guess right now is my time to count my blessing, for they are many.





Fiona amazes me daily. Every day, its something new. A new word, a new sign ( finally starting to pick up on a few), a new move, a new grasp of a concept. Recently, she has been able to distinguish her brothers apart, not a small feat considering half of our friends still can't do this. She is learning words can get her what she wants, and her list of words continues to grow. Mind you, the majority of her "words" all start with B and therefore all come out sounding the same... brother, bottle, book, baby, bath, bounce, ball, beans... all sound like "Ba" or "Baba". But along with her little pointer finger, its communicating non the less. Bath is the current favorite. I find her frequently standing at the tub, one leg up on the edge, calling "Bbba....bbba..." Princess gets what she asks for.



She has been very clean recently.

Cracking the whip with discipline seems to have started paying off. A smidgen of respect is showing itself in my boys and at the least they have stopped telling me that I am not their best friend, as well as the more stinging, that they hate me, when I get stern. Never thought the  "I hate yous" would come at the ripe age of 4. Long way to go, but no longer completely losing my mind over a losing battle. A couple weeks away from their first day of VPK, and I am crazy in awe over how mature they have become in 4 years. My babies are now boys.




I have been enjoying reading the stories from the NDSC convention that have been rolling across my news feed. Considering the other major thing I was seeing was the tragedy in Aurora, CO, its nice to see some of the good that is going on in the world. I am so thankful for all these amazing organizations that are out there giving me hope for Fiona's future. NDSC, IMDSA, IDSC for life, NDSS.... thank you for all you do in raising awareness, research, community and camaraderie. Some day, I look forward to attending one of these conferences with my designer princess.

Right now, though, no time or funds for long distance conferences. Spending my tightly budgeted time with the four people I care for most. Sporadic beach trips, pool days, and lots of couch movie nights is nothing to complain about. Life is good.

fOTO dUMP
Instagram @shannonblaeske

Saturday, July 21, 2012

A Good and Perfect Gift


Penelope Ayers Book

A while back, I received an email to review a book on my blog. I do not blog for money or perks nor normally do I promote anything that I do not have a personal connection with, although I get asked to frequently. Kelle's book was very personal for me because her walk happened simultaneously with mine, down the street from me, and a lot of my healing came from reading hers through her blog while Fiona was still forming in my womb.  But after reading about the author of this book, I decided to break my normal and do a review for someone I do not know.

A Good and Perfect Gift is the memoir of a mother who unexpectedly gave birth to a baby with Down syndrome. Sometimes, as a mom who has a child with Down syndrome, it can be hard to read other accounts of the beginning of the diagnosis because it becomes an unavoidable comparison. Honestly, why it has taken me this long to finish the book is I struggled to connect with the authors experience at first.

There is a great difference in knowing prenatally and finding out after. I am on the prenatal end while she (and Kelle) went through the shock while her baby was in her arms. I was able to start my road to recovery much sooner and had some opportunities to connect with people who brought me to a place of acceptance much faster. Some of the things she was saying I just did not think or experience. I started letting those differences pull me out of the book. This was also her first baby and my experience there is also way different. My first were twins. I can't even beginning to explain what having twins as your first is like.A lot of moving, a lot of crying, everything done twice... you become efficient and relaxed and easy going or you simply do not survive, or at least that's what I felt worked for me to survive.  I had nothing to compare to, so I didn't see how one baby is so crazy. Having just Fiona seemed like a piece of cake in comparison (Key words, in comparison). I know everyone is hating me right now, defenses are up on why it was so hard to have their first baby, but I am being honest. If you had twins first, you would feel the same way. I can't relate in many ways to new baby experiences. But, also in all honesty, I barely remember the first 6 months with the boys, so maybe I was more like a normal new mom then I give myself credit for. Those that really know me can let me know :)

Then there was the intelligence aspect. The author is far more educated then me, as far as institutional studies, and had a lot more concern over the mental retardation then I ever did, at least right off the bat. She valued educational achievement much more then I do- while I was a great student, I didn't and still do not see the almighty importance of education.... don't hear me wrong, its pretty high up on my list, but definitely not number one. Life should not revolved or be measured successful simply by that, in my mind. I value character, relationships and love much higher then education. And I also value a hard working person, whether that be white or blue collar. Really, I was more concerned with the fears of her not ever experiencing being loved by a husband or the joys of being a mother, the mean girls in school, and that she might never live independently far over her getting her masters. The author eventually gets to this point, so I am glad I kept reading.

When I finally did pick back up the book, the read was no longer a struggle. Both because I went at it with a different mind set then my judge and comparing way I did at first, and also because the authors thoughts started to sound a lot like my own. Amy Julia's book is honest, well written and a great incite into one family's journey to accepting. There is a great disappointment and pain that comes when life hands you an unexpected card. No amount of intelligence or understanding can dull that initial shock when it happens to you. But its also amazing, this thing called love, what it can do. In the last 80 years, the potential life of a person with Down syndrome has greatly improved simply because the power of love. Research has proven that a loving and caring family can improve the cognitive and physical abilities of their child. The average IQ of someone with Down syndrome has risen from 10-20 to 60-80, in that time. I appreciate all the accurate, up to date and insightful information she provides in the book. Whether you are pro-life or pro-choice, being pro-correct information is something everyone should get behind.

The more that share their story, the more people will be reached with the message that life with Down syndrome is not a burden. It is no ones cross to bare, its no ones punishment or something to be pitied. It is a rockier path with a whole lot more flowers to enjoy. Amy Julia Becker paints this perfectly.

The end of my copy of her book is filled with things I underlined and circled. Just like anyone who starts off on the journey of a Down syndrome diagnosis, most of us all seem to end in the same place.

"I didn't know what she would be able to do, but I hoped for more and more. I understood that this extra chromosome of Penny's would slow her down sometimes. But I was no longer willing to trust the experts who tried to tell me exactly how she would be slowed down, or to what degree. Instead, I was willing to wait and see. I didn't have specific expectations for her athletic endeavors as a teenager or her college degree or her spouse. I simply expected that over and over again I would be surprised, and delighted, by our daughter."

I have only read Bloom and, now, A Good and Perfect Gift out of the many memoirs out there about Down syndrome, but I am looking forward to reading, open minded, other's journeys. The stories all vary, but the message is all the same. ALL life is precious. 

I highly recommend A Good and Perfect Gift to everyone- both parents just starting off on this journey, those who are farther down the road, but really to everyone who does not have a connection to Down syndrome. We, families with a loved one with Ds, are blessed to be enlightened by our children, but you can be blessed by glimpses of the beauty we experience daily through Amy Julia's words. Beauty of growth, strength and undeniable love. 



Tuesday, July 17, 2012

Preconceived Ideas

I remember when I got my first positive pregnancy test. Although its been over 5 years now, the memories are so strong I can still feel exactly how I felt that night. I took it at 1 am, a random feeling came over me that I should take one. We, Charlie and I, stayed up till nearly sunrise, talking, crying, both excited and scared shitless. The memories from that night are crazy intense... maybe because I have replayed it in my head so many times its like a well loved movie. Specifically, one certain thing came to mind from that night. Siting in the hall across from Charlie, I told him I feared that God was going to give me a child with special needs. I told him that I was never comfortable around people with special needs and I was scared that God wanted to grow me in a way I did not want to grow. And when I say special needs, it was Down syndrome I was picturing.

Well, we did not have a child with special needs that pregnancy. No, we had twins. And that was a whole different kind of fear. And oddly enough, when we got pregnant again two years later, not a thought of worry of there being anything wrong with the baby went through my mind. I was just praying for there to be only one baby in there this time.

And then came the walls crashing down. Heart defect, clubbed feet, Down syndrome.

I knew three people as a kid who had Down syndrome. But if you had asked me when I got Fiona's diagnosis how many I knew I would have only told you two. Only two of them came to mind when I used to think about Down syndrome. They were both boys, one just a few years younger then me and one about ten years younger. They were both very aggressive.

They did not have a good sense of personal space. And the whole becoming a man but not understanding or lack of control caused some issues... the older of the two could be just inappropriate sometimes. But yet everyone who really knew them, unlike me who just knew from a distance, loved them. Adored them. I never doubted they were great people, I just was afraid to befriend them. I never questioned their right to be a part of anything, was never mean or made fun of them, but I kept my distance.

I knew this was an area my heart had not been softened too. Or maybe, more so, my eyes just had not been opened. And that scares the crap out of me now that I am on the other side. I fear people fearing to befriend Fiona. That people may be uncomfortable around her or find her behavior repulsive. The baby stage is so easy. But one day my baby is going to be an adult. And while she does have potential to do great things, most likely there will be some sort social awkwardness. The point when what's cute as a kid becomes uncool, embarrassing as an adult. Things that I know I will admire of Fiona, but things that our cruel society will judge her for.

I have no clue where those two boys are today, how they are doing or what they have been able to do in life. I am so ashamed of how I distanced myself and how I feared them. Like I said, those that actually knew them weren't afraid of anything. Their aggressive boy behaviors needed some direction, but really beyond that, they were good friends, great kids and the stereotypical life of the party. Honestly, my ignorance of how to befriend them is what caused all the confusion. Something that drives me to talk to everyone and anyone about Down syndrome now- to help abolish that ignorance in others.

But if you remember, I said that I knew one more person with Down syndrome. I don't know how she slipped my mind for so many years. In third grade, a new girl came to my school. (I went to a small private school, and just recently I realized I never had any kids with special needs at my school. Not because of discrimination or anything, but simply most private schools cannot offer the one on one assistance or therapy programs the state can.) Anyway, I became friends with this girl, Tiffany, and she had a little sister who had Down syndrome. She must have been in kindergarten at the time and I knew her until Tiffany changed schools in middle school, so Katie must have been about 5th-6th grade the last time I saw her. Sometime after Fiona's diagnosis, I was on Facebook and saw Tiffany post something about Katies high school Prom. That's when I remembered her. And a flood of comfort came over me as only good things stuck in my memory about Katie, unlike the two boys I had known. I had just adored her. I remember her trying to play with us and keep up with us, like a typical little sister. I remember not really noticing Down syndrome, but just Katie. Which is why I think she did not come to mind when I used to think about Down syndrome.

I don't think the apparent obvious boy vs girl is the answer to why I felt so differently with my two experiences with Down syndrome. I think it was more the kind of relationships I was able to have. With the boys, I was always an outsider looking in... making assumptions and judgments from a few encounters. With Katie, I had the privilege to really be around her. To watch Tiffany and her interact and witness the amazing sisterhood let alone friendship they have. I got to see Katie as Katie, not just as the girl with Down syndrome, which was how I knew the two boys. And just a couple weeks ago, I got to reconnect with Tiffany and Katie when we were in Michigan, and to introduce them to my little designer gene princess. It was great to see Katie, all grown up, who is beautiful, charming, and actually seemed much more mature then most 21 year olds I know. It was also great to chat with her mom, who has been an amazing advocate for Katie and a role model for me.



I know the other two families were incredible advocates for their boys. I know that their siblings were super close and supportive of them. But as a young girl, ignorant and unaware, I didn't give them a chance because I simply did not know them. This makes me a huge advocate for inclusion in the class room. While I feel this would really benefit Fiona both academically and socially, I also see it really benefiting the other kids as well. Getting to be around and know other kids with all sorts of disabilities opens minds, eyes and hearts, creating a more compassionate and considerate, as well as educated, community. I have always felt while my book education was top notch at a private school, that my real life and social education was severely neglected. My public school friends got to experience so much more life then I did, both good and bad, which there is both positive as well as negative things in that. Makes deciding what is best for my own kids very difficult. One more year before we have to cross that bridge :)

I am glad that I had some experience with Down syndrome prior to Fiona. I know some moms who now have a child with Down syndrome never knew a single soul with it prior. I feel I am aware of the stereotypes and attitudes, considering I used to be guilty of them,  as well as the regret in not understand myself as a kid and see the importance of opening eyes with everyone I can. I am very insistent in surrounded Fiona with as many people as possible, giving everyone a chance to know her, and not just her label. The biggest enemy is the world. Without everyone else, life with Down syndrome is great. So I want to help Fiona as much as possible by showing the world what Down syndrome really is and how to be more inclusive and understanding of different disabilities. Or better yet, to help them not notice the disability as much as they notice the ability in Fiona.


Linking up with another blog hop, and excited for this topic. Its something that I have attempted to write before but never felt I could explain it just right. Thanks for the push, Meriah :)



Saturday, July 14, 2012

Faith and Disability

Faith and Disability. Two things very heavy on my heart, but I have pushed writing this for the blog hop till the very last minute because I think its one of the hardest things to talk about. To talk about my faith is easy- I believe very deeply in the one true God. But to talk, or write in this case, to an audience who may not have any understanding and therefore not just sound like an insane Jesus freak, is a tricky thing to do.

My faith is who I am. Every choice I make is founded in the Bible. We live in a culture that likes the idea of oneness and unity and acceptance- coexist is it called?... as in the whole "Your God is right for you, and mine is right for me". But Christians believe in one true God, so we are not liked very much. We are viewed as pushy, self righteous, arrogant, closed-minded. I am very open-minded and love studying other religions. I am more likely to pick your mind if you believe differently then I do then to tear you down. I can understand why people believe certain things, even if I do not believe them myself. However, it is not possible for me to believe in one God- one way to salvation, if I also believe or agree that everyone is right in their vast beliefs. There is a difference between standing firm in your beliefs and shoving your beliefs down others throats. If you do not firmly believe what you do, then really, you don't believe. 

I am anti-abortion to the core, but yet when I hear people using God as the reason not to abort, I cringe. Because I am aware not everyone believes in God. You simply cannot argue with someone that something is wrong because God says it is, when they do not believe there is a God. Its not logical. Its arrogant and pushy and a tad ignorant. Not that you can't state your beliefs, you just can't base your whole argument around it. 

I have been told I am a bad person for not aborting Fiona. That I am selfish and cruel and ignorant. Its always a struggle for me to approach opposition when it comes to Fiona's life, both emotionally and physically. Because the second I bring God into the conversation, it seems all validation of what I have to say gets thrown out the door. But yet God is such a big important part of my life- no He is my life and my reason for everything, so its unavoidable to bring Him up.

John 15:19 says, " If you are of the world, the world will love you as its own; but because you are not of the world, but I chose you out of the world, the world hates you".  

This is really hard for me. Not because I want everyone to like me, but because the value of every life is such an important message I want to spread. There are certain logical questions that I simply cannot answer other then "God says so". This frankly doesn't fly in the secular world, which something like over 75% of the world is. 

A lot of what I credit to God, others call a fluke. Fiona was originally diagnosed with TGA- transposition of the great arteries, on top of an AV complete. A heart condition with a much greater morality rate then AV and would require immediate surgery after birth. For two months, I sat through echo after echo as they held out their medical books next to the ultrasound that was an identical replica of the TGA ultrasounds in their books. Then one day around 7 or 8 months pregnant, that text-book diagnosis of TGA just "disappeared". Doctors said it cant just disappear, it must have never been there to begin with, yet I could tell they were all stunned. They would never admit that there was a possibility that the over 300 hundred people we had praying for Fiona made a difference. 

 My faith in God answered, in one breath, the ever mysterious question, "Why?"... because its His will. I cannot even being to tell of all the good things that have come from Fiona having Down syndrome. Good for me, good for her, good for our family, good for complete strangers. Hearts softened, eyes opened, priorities aligned, friendships mended, friendships made. Some accuse me of being weak, having to use God as my crutch to get through difficult things in life... they don't understand how freeing being carried by His strength can be. And I think this is where we start getting in gray areas is that many other religions offer this same strength in their God. It can be easy to say its all the same or its all good. Except I believe in the God who says its not all the same and to "Beware of false prophets. They come in sheep's clothing but inwardly they are ferocious wolves" Matt 7:15


My faith has everything to do with why I value those with disabilities. It has everything to do why I continued my pregnancy with Fiona and why I will fight for the right to life for every unborn child (in a loving, non picket line way, of course). I truly am amazed by those who claim to be atheist and fight for the rights of the disabled. If there is no God, then what point is there to be anything but selfish? If there is no God, then what value does any life have, let a lone one that is less then par in the eyes of the world? 

I tried to stay away from as much churchy terminology as I could for you readers who are not Christians. I do wonder how my views would be if I was not raised in a Christian home. If my faith would be as strong or if I would even believe at all. I am not one to take things at face value- I frequently wrestle with the things that don't fully make sense- that's why its faith, it requires some blind following. But the more I pursue God, the more it all is clear to me. I cannot live without Him. I would not be here without Him. He doesn't just bring me happiness, He fills me with joy. 


Wednesday, July 11, 2012

All in due time

I must admit, I was a bit nervous seeing my nephew and niece that are both Fiona's age. Actually, out of the three that were all born within 7 months of each other, Fiona is the oldest. I knew, just like with the children of my four friends who had babies the same year as I had Fi, that their development was going to be far more advanced and there was bound to be a sting of the what shoulda/coulda been.


I don't want anyone to ever judge Fiona for what she is not doing yet, but I find myself at times doing it... that same sadness or pity I hate, I am guilty of behind the closed doors of my mind. Its incredibly hard not to compare when around typically developing kids. Even more so now as Fiona gets older and the gap gets larger between the typical ages of certain developmental milestones. Seeing not even yet one year olds surpass Fiona, who is nearing two, is sometimes hard. But whether it be mental preparedness or just strength with time, the sting is getting duller and duller.


Sure, I noticed the difference in Fiona, Calvin and Oliviah. Mobility, communication and understanding all greatly advanced in comparison to where Fi is. And I had my moments, lost in thought about how that extra chromosome can sometimes suck. But it wasn't painful, just reality. Mostly, I was impressed with my princess. How hard she tried to keep up with everyone, how social and loving she was with her cousins. She learned a few new words on our trip... still no mama, but lets see, mine-mine (always said in twos) entered her vocabulary, as well as juice, bounce and Harley, as in my step moms dog, not the motorcycle. Her sea legs got stronger, she stands a lot now and even took 6 whole moving forward steps across my dad's kitchen to me.


I came across a quote posted by one of the Down syndrome organizations I admire that Einstein once said.
"Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” 


This goes for all my kids, I am fighting to put any one of them in a box. Recognizing their strengths and best assets and not pushing my standards on them. Easy to say, much harder to apply. We all have sub conscience expectations for our kids, dreams (usually things we wanted for ourselves and never got or accomplished), and an ultimate idea of how they can be their best. I am dealing with a whole other issue with my boys who have developed defiance and strong wills, to master the balance of discipline, while with Fiona it is a matter of embracing her pace.


Around 9 months, I think, we started working on putting objects in a container, and then taking them out. A  concept or game a typical 9 month old would understand and enjoy. She learned how, but did not find interest in it. Now, at 23 months, its her favorite thing to do. That about sums up how Down syndrome affects development. Not that its never going to happen, just its going to happen at a later time.  Therapy or no therapy, Fiona does things on her own time. And I know this because I slack big time at doing the things her therapist tell me to do, and she always masters them months before her EI (early intervention or therapy) goals. Minus gross motor- its not her lack of will to walk, but her poor strength that is hindering her. 2 is the average age for walking with kids with Down syndrome. My competitive soul wanted her to master it at 18 months. And the closer we get to 2, the more I have to fight myself to not worry about that number. She is going to walk... she is taking steps. She will do it when she is strong enough and when she is ready. Really, in the large scheme of things, I am going to blink and she is going to be walking and I will never again think about it happening and what age it happened. It simply does not matter, yet I can get easily hung up on it. 




These thoughts are really far and few between. Down syndrome, mosaicsim, development, ability.... I really only think about them when with the therapist or with other kids Fi's age or younger. That's why I want to slap myself in the face when I start to pity her because I know how great it is 99% of the time. Most of the day I am in awe of her, not worried about what she is not yet doing. Each random step she takes is greeted with a roar of applause, not frustration that its not more. And watching my boys with her is the greatest gift I could ask for. They don't know development, or milestones, or age... they truly don't see what Fiona can't do, only what she can. And they are more excited then me when she does something new. A child's innocent eye can be the wisest perspective. 




I am excited for this upcoming year. 2-3 for a child with Down syndrome is like the 1-2 year for a typical child. A lot of new stuff, a lot of break throughs, and a lot more exciting. Also, a lot more crazy since I will be chasing three kids around, all probably running in different directions. I never would say I am more proud of Fiona for accomplishing things then her brothers, but I am impressed with how much harder she works at it all. Nothing comes easy for her, but the girl doesn't complain. Okay, well maybe she does yell at her PT, but the smiles come back quickly. Oh, and no eye surgery ( probing her tear ducts and putting tubes in the expand them... everything on Fi is tiny) for now. Holding off till she is older, and thankful I don't have to put my baby under for the fourth time in two years. 


(sorry for my annoying voice saying her name a million times)

Tuesday, July 10, 2012

2nd Annual Road Trip North

I have never been so in love with my home as when I walked in the door this Monday morning. 15 days of being away will make you want to kiss your kitchen floor and hug your bed. It seemed more spacious then I remembered, every flaw of our small home overshadowed. Absence makes the heart grow founder.

Nashville


First stop, a good kinda half way point from our southern location to our northern destinations. And incredibly convinent that my step sister, a long time good friend, and two great friends we met in Florida all live there. Made for a nice two day- half way rest.
















Wisconsin

My husband is a Cheesehead. And I have grown to love this state that lies on the other side of Lake Michigan, mostly because it holds all my adorable nieces and nephews. First stop in Wisco is always Nanas work. After all, she is the one that is dying the most to see the kids.




Fiona is a great road tripper. Considering we did almost all night driving, all three of the kids slept most of the time. But even when she was awake, girl was happy. Loved playing peek-a-boo with her in the rearview mirror. 

Other then my own kids, I live for my nieces and nephews. It is the hardest thing about living so far away, not seeing them. I had the privilege to grow up close with some of my cousins, and it breaks my heart my kids don't have that. Maybe someday... for now we will take what we can get on the week visits here and there. 




































































Chicago

My heart always beats faster when I get close to Chicago. I love this city. I am a midwest girl, this is my New York ( and I really think Chi-town is way better then the Big Apple). Its also home to my longest and bestest friend. Just four months older then me, she used to lay on my mom's pregnant belly with me inside. I love her more then I love Chicago and was glad to spend a day with her and her husband. An extra bonus- my brother in law, his fiance and my youngest niece drove down to Chicago for the day as well. 






















Michigan


My home. Or was my home. Last year we spent our week in Michigan enjoying Lake Michigan and the great town of Grand Haven and all its summer small town beachiness. This year, we went home. To the East coast. To my childhood and familiarness and old friends. Two years ago my family grew by three... a step mom and two step sisters. Our family dynamic has changed, but enjoyably. And I love these opportunities to get to know them all more. July 1st is my week. The week I look forward to all year. Because ever since I was a little kid, I have thought those fireworks were for me. My birthday. July 5. People always have work off this week, family comes together. Boats are brought out, grills lit, and sparklers galore. My only wish every year is to be with loved ones, and once again my wish came true.



























































It kills me that a lot of these people I see only once a year. I dread the good byes and avoid them when I can. I like the places, but I love the people. And I wish it was as easy as we all could be near one another. 

The longer I am gone from the north, the less it feels like home. And with each return to Florida, this feels more and more like where we are to be. Tonight, as the boys were bouncing around our living room, Breiden turns with a huge smile and says, " I am happy to be home." Me too, kid. Me too. 

tRIP fOTO dUMP

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