Thursday, September 29, 2011

Waking Dreams

"Hope is a waking dream"- Aristotle


A friend gave me this cup for Fiona Hope's first birthday. So fitting because the word Hope is a huge part of my little girl, beyond just the name. I read this every morning as I enjoy my now necessary cup of coffee (and every afternoon with my necessary second wind cup of coffee). I read it, and say it over and over to my self, but I haven't been able to wrap my head around what exactly it means.

Fiona is talking a lot. So much, she even told her PT "I don't want to"or... at least it sounded just like she said that. Just like it sounds like she says "Ya" at just the right moments where it makes sense, she mutters "Ma-ma" when she wants to snuggle, and when she is really tired and ready for a bottle, she cries "ba-ba", all very inconsistently. Its borderline communication. Hard to tell how much of it is intentional, and how much is just that she loves the sound of her own voice. Kinda like she loves the sight of her own face. This girl could live in front of the mirror.


I long for fall-like weather. In hopes that it will be a nice,cool, breezy day, I dress as if I am in Michigan and then I am cursing in my head all morning wishing I had at least a hair tie to relieve my self from the 90 degree weather I am wearing jeans in. It has dropped down into the high 80s, and even that little bit of relief has tricked my mind into it feeling more like fall. I stole a Kelle Hampton craft, made some spiders with the kiddos, and have already hung a web filled with spider rings in our front window. I live for Halloween, but the PG version. Not so much into the scary, gory, demonic aspect. Spiders are scary enough for me.

I have to admit, while my heart aches for the weather you Northerners get these next three months, its nice to still be enjoying the pool. We go a little less and far between, but the option is there.  Palm trees with the back drop of clear blue skies takes center stage instead of the rustic hues of falling leaves. Well, sometimes clear blue skies scattered with random rain clouds. But still, mostly sunny days. And the leaves change here, just not as noticeably or grandly. It doesn't really cool off (and by that I mean 70s) here till well into November. So until then, water-filled activities and toasting our skin with the suns rays will remain a part of our daily life.













A waking dream. The moment, where you are still dreaming, but you are aware of it. When you can still hold onto all the emotion and reality while knowing that its just thoughts. Hope is a waking dream. An intense thought that feels real. An idealized version of reality. I hope that Fiona's muttering is true communication. I hope that 80 degrees truly feels like 60. And I am going to fake sleep as long as I can to keep that feeling going as long as possible.

Wednesday, September 28, 2011

Fiona's surprise


Wait for it...


Wait for it...


Not quite yet...


Almost...


Awe, come on already Fiona!

...


Fiona's first visible tooth! Finally caught it on camera. She's got two top molars as well, but this is the first tooth that we can actually see.

And for those of you who think she's got no hair...


Oh its there. The same fine, wavy strawberry blonde hair her big brothers have. If she is just like her brothers, she probably wont have enough for any pig tails till after her second birthday. That's okay, just that much longer she will still look like my little baby.

Here is another Pinterest find- something that was equally as fun for me as the boys. And now serves as a nice painting in our play area




Fiona thinks its pretty cool, too.

Monday, September 26, 2011

Buddy Walk with us

In possibly just a few short months, the medical world will be introducing something new. A blood test. A simple little blood draw with zero side effects that will be able to indefinitely tell an expectant mother if her baby has Down syndrome as early as 10 weeks into the pregnancy. Before some women even tell anyone they are pregnant. Before they feel the baby kick. Before they see anything other then the little flicker of the baby's heart beat on an ultrasound. Medical science is amazing. And I wish I could have done this instead of the painful, risky Amnio I went through. But I am scared how many women will use this easy access to information.


9 out of 10 Americans abort with a prenatal Down syndrome diagnosis. A statistic I have brought up before. Its a heartbreaking number to me because I remember clearly everything that was said and pushed on me even before they had even confirmed Fiona had the extra chromosome. A picture was painted through the doctors words and actions of a tragedy, almost referring to the baby as if she was dead... because they expected me to cut off her life. They were ready to put their arms around me and walk me through an abortion. Because my daughter had Down syndrome. And 9 out of 10 would abort her. And if it wasn't for my own personal stance against abortion in any situation, I may have considered it, what with all the ignorant perception I was being given.


A survey* was sent out to 4,000 something families that had a family member with Down syndrome who belong to one of the many different organizations, such as NDSS, that offer support. They asked questions to the parents like, do you love your child? Has your child made a positive impact on your life? Are you ashamed of your child? Do you regret having your child? .... They asked the siblings similar questions, questions about the impact of having a sibling with Down syndrome. Overwhelmingly, people responded that their Down syndrome family member is loved, has bettered their life, and only a measly 1 percent saying that they regretted having their child with Down syndrome.

Now the poll might be bias since it was sent to families who belonged to Down syndrome groups, and therefore, to people who have attempted to better their child's life, but I am pretty sure if you sent out a similar poll to typical children's parents, the numbers would be the same.

What really got me, was the responses people with Down syndrome had.





  • 99 percent said they were happy with their lives







  • 97 percent liked who they are







  • 96 percent liked how they look







  • 86 percent indicated they could make friends easily





  • A measly 4 percent said they were sad and depressed. 1 in 20 Americans are depressed, only 1 in 25 of these people with Down syndrome surveyed claimed to be sad. Yet parents make the decision that their baby, developing with an extra chromosome, is not worthy.


    Poor quality of life is often a big factor in why people view Down syndrome as a bad thing. But what defines a poor quality of life?



    I once heard someone said that they couldn't be happy about their pregnancy until the test results showed that the baby did not have anything wrong with it. Before that baby has even breathed its first breath, that parent was telling it it had to be perfected to be loved. That parent was also indirectly saying to me, your child is not worth life in my eyes. What they choose to say out loud, though, was that they are not as strong as someone like me to handle a special needs child.  This is a concept I just can't wrap my head around. To me if you can not handle anything that comes with having a child, you should not have any children period. Because being a parent is not about you. Its not about bettering your life, or making a picture perfect family. Its about making the best life possible for the child, through all the hurdles that will be put in front of them no matter how difficult. Yes, you will break down and it will be hard, but you do it. Not because you are a super human, but because you love your kid. Someone who has done nothing wrong other then be created with an extra chromosome and has oodles of love and potential waiting to be stirred.

    I don't consider my daughter to have a poor quality of life. She wakes up smiling every morning, and her smile is that kind of smile that comes from so deep within, it takes over her whole body. She is the apple of her fathers eye and has her brothers (who see her nothing other then their baby sister) wrapped around their finger. They let her hit them and pull on them and drool on them and they just smile and tell her shes cute. Not because I tell them to, its their natural instinct to love her. She is a fighter, who has overcome more in her one year then some do by the time they are twenty. She lives for bacon, brownies, and black beans. She attacks her dolls with kisses, snuggles deep into my chest, and thinks her brothers are hysterical. She has the potential to walk and dance and run. She has then potential to graduate from high school, to possibly attend college. She has the potential to have a job. She has the potential to create art or play a sport. But its not so much what she will or wont do. Its the impact she has already made on our lives and the impact she will make in others that shows me she has quality. Good quality.


    Aborting a baby because of a Down syndrome diagnosis is aborting on a chance. The chance that the child is severely handicapped. What they don't tell you as you are sitting in the doctors office, being handed pictures of chromosome structures, is how small of a chance that is. Less then a third. The majority of people with Down syndrome are high functioning, active, happy, contributing members of our society. The majority may not make a lot of money, they may need extra help, but they have a positive impact on those around them. Having a child is taking a chance. The chance that at any point on any day, you could lose them. At any point, on any day, they could become disabled. At any point on any day, they could cause you pain, disappoint you, make life hard for you, frustrate you, embarrass you. 9 out of 10 ignorantly assume that they can escape all this by not having a child with Down syndrome. Or more, they ignorantly assume that this is what having a child with Down syndrome is like.

    I know I am still new in this journey. That there are a lot of hurdles yet to come with education and health and working and independence. But I know what I once thought about Down syndrome- I know what I was once told about Down syndrome, and its not that way. Its not that way for my 1 year old, and its not that way for the majority of other people varying in ages I have met. Abortion, to me, is always selfish and wrong. And I know that my own beliefs won't necessarily change anyones mind. But the issue that is so disheartening to me, is that people are a lot of the times ignorant about aborting a special needs child. That doctors encourage it. That people are judging their baby before they ever even meet them. They are not aborting because they don't want to have a baby, they are aborting because they don't want to have that baby. And now that they will be able to find out with a routine test before they ever even feel the baby, that ignorant decision will be easier to make.


    October is National Down Syndrome Awareness Month. And with that, its also Buddy Walk time. Our local Buddy Walk is being held on October 22, but all September and October, Buddy Walks are being held all over the country. It is encouraging for me to see our community come together like this. Families and friends that are out to celebrate the extra chromosome. I struggle with the Reece's Rainbow's slogan- " Because every family deserves the blessing of a child with Down syndrome" I get where they are going with it, because they are trying to find homes for kids that already have Down syndrome. But while it is a blessing in some aspects, it is a disorder. It does make life more difficult. If I could, and I do, I ask God that no one else be born with it. Wait, let me correct that, let no one else be conceived with it. But Down syndrome is not the end of the world. People who have it are still people worth being celebrated. People worth being here. And the Buddy Walk is a great way to acknowledge that. I encourage you to attend your community Buddy Walk, whether you personally know someone with Down syndrome or not. See past the myth that worth only lies in perfection.

    To find your local Buddy Walk visit HERE

    And to get involved in our local buddy walk and walk with us for Fiona, email me at Shannonblaeske@gmail.com

    *information on the poll given to Down syndrome families was taken from HERE*

    Sunday, September 25, 2011

    Im Back

    So, I am not sure if I am cured, but I at least feel like I am heading in the right direction now with all of this. A short two week break was just what I needed. And I realized just how rewarding being open really is for not only my mind and soul, but for those of you who contacted me asking to make this public again. ( Apparently, when I went public again all of my private posts got reposted and showed up on everyone's reader)

    I like the letter to my kids, and I think I will continue doing those every once in a while. But I also enjoy writing to the anonymous. Some ebb and flow... a little bit for you.... a little bit for us. 

    Having an audience keeps me accountable. It keeps me accountable to take pictures- something I did a lot less of when I didn't have somewhere to post them. It keeps me accountable to be positive. See my life through a different pair of glasses. Because its easy for me to forget how great we have it when I am so close to it all day long. Stepping back here and reviewing my days on how I want to remember them forces me to notice things that I otherwise let slip through the cracks. 

    This past week I did not blog at all. Not even privately. I knew my kids would be okay if I did not document just one week of their lives. So I took a break. I did some projects, organized the house in hopes it would make it easier to keep it clean in the future, dove into training for an up coming 5K, and reconnected with something I have severely neglected in my life, reading His Word. 

    I am a Christian. And I know I have touched on my faith before in the past, but its always a side note. A small mention on how my strength comes from God. For the most part, I am quiet about my faith, at least here. Because I know what reading those words does for a lot of people. It turns them off. They make assumptions about me and my family. They discredit my strength with Fiona because I believe in something. They stop listening to my fight for choosing life or adopting special needs because they are looking for another reason other then "because God says so". 

    And this was my big realization that made me take my blog private. I was wrapped up in what people think of what I am saying. As if anything I would do would enlighten people, move people, change peoples minds. I was hiding the real reason why I am where I am today  so that people would listen to me. I was hiding God and I needed some humbling.

    So, I am a Christian. And I am working on making Him my number one priority. Every ounce of strength and hope I get in any situation comes from my faith that God is in control. 

    People have been asking a lot lately how Fiona is doing. And for the first time, I have not much to say. Literally nothing other then "good". Well, I could go into all the detail that her braces are now off during the day and she is enjoying every activity to its fullest.  Her heart is fixed with no sign of future surgeries and  her tubes seem to be working. Medically, she is good. Physically, she is delayed, but still good. Crawling is possibly around the corner, she looks like she wants to, but the second it gets too hard she gives up. She's a true princess. But that's not what people are asking. They are asking  whats the next thing we have to deal with. We are all waiting for the other shoe to fall off. For another big hurdle to jump. Even I have thoughts of luekema, seizures, and other common issues that may pop up. But right now, there is no next thing. Right now, she is good.


    Meeting new people is always a tad awkward and leaves me in a personal debate. Do I tell them or do I leave them wondering. The first question is always "How old is she?"... " 13 months" I say proudly. The smile disappears. They look from me to her and then ask, "How big was she when she was born?", sincere concern is in their eyes. Oh, so they noticed she doesn't look like she is even one. "6'8"  I say proudly again. Their thoughts are written on their eyes. Whats wrong with the baby, shes too small. Then they notice that she doesn't crawl when I put her down. And they smile as they stare at her and try to figure it out. I don't want to jump start every new conversation with "She has Down syndrome and had a heart condition" but this whole uneasy conversation that takes place every.single.time I meet someone new doesn't seem the way to go either. Its like I am holding my breath for the first ten minutes, waiting for the big white elephant in the room to be brought up. I find my self thinking, if only she looked more Down syndrome... which always makes me smile because pregnant me had once prayed that she would look normal. 

    3.1 miles is a lot harder then I thought. Probably has something to do with the fact that I haven't run since the week I found out I was expecting Fiona, which was, oh... 22 months ago. Minus that one time I ran a month or so ago and got shin splintz that put me out of commission for a week.  I've yet to run the full distance, 2.62 is the farthest I've gotten. But that was with just two weeks of training and I still have 9 more weeks till the race. Between using muscles that haven't been used in far too long, and the nice black eye I am sporting thanks to my headbutting son (okay, it was my fault- I tickled him and he arched back in laughter right into my face) I look like a mess. But I am sure once all this aching goes away, I am going to feel great :).


    The art student in me has been reawakened with the discovery of Pinterest  . Since money isn't exactly a-flowin, but my creative juices are, I have been taking ideas I find on there and recreating them for my house. I had forgotten how much I love to paint. And how much more rewarding making something for your house is then buying something. And thankfully, I have a little bit of craftiness and a little bit of art school to back me up in my endevers.  My refurbishing of our plain off-white Rooms-To-Go lamp shade was my favorite project. (Gotta love some cheap fabric and mod podge)



    So basically, while I removed one time suck out of my life, I took up about three more and am now bringing this one back in. But hopefully, my priorities are in better order now. Now that I am focusing on the right thing. 



    Saturday, September 17, 2011

    Dear Gavin and Breiden-

       Staying home with you kids is one of the most rewarding blessings in my life. That being said...


    I am struggling to find the energy to keep up with the demands this money-less job requires. You break me down slowly with the torment of whines and cries, and make my blood boil with the fighting, lying, and destroying everything in your path. Must you touch and throw everything you walk by? Its like two little tornadoes are whirling around me, and just when I get one step ahead, you pull me three steps back. The house is always a mess. And not like "O my house is a mess" and there are just a few things out of place and a room that no one will see full of laundry. Mess like fans that have not been dusted in months, floors that, although swept daily, are covered in crumbs and sticky apple juice spills. 8 loads of laundry waiting to be put away, two sinks full of dishes as well as a load in the dishwasher, trains and trucks and baby dolls at every step. Messes that I cannot get rid of. Because just when I can't take the mess any more and I muster up the energy to really clean it, not a half hour into the next day, those two tornado's hit again and my hard work is destroyed. I've tried the clean as you go way too. Ya, that was even more frustrating.







    I love being home with you. I'd take this stress, the stress that leaves me with a constant headache and the need for caffeine to make it through the day, over the stress of not being with you. Some days, or moments, are good. Really good. Like yesterday, we had a three hour excursion to buy friends birthday gifts and go to the playground. And you were angels. That were quiet and polite in the stores and made friends and shared at the park. The moments that we have enjoying Popsicles on our driveway, or making Fiona laugh as I am putting her brace on, or playing in bed, or trying on our Halloween costumes. Actually, that last one has caused me equally as much stress as joy because you want to put them on every 5 minutes.


    Those mixed half amazing have horrible situations make up a lot of our activities. For example, playing at the beach- amazing. Fiona hating the sun in her eyes while refusing to wear glasses or a hat and you two screaming about having sand on your feet the whole walk to the car- horrible.


    I wish the driveway moments were the majority of our time. But you are three. And everything is dramatic. Not getting your way is the end of the world, and you pull every move from the sad face to screaming to stomping your feet as you march away saying "NOT FAIR!". I am sorry its not fair that you can not have ice cream for breakfast, or you can't swing your baseball bat in the house by our plasma TV, or you can't drag your sister around the house by her feet,  or you can't have candy for dinner. ( Most of our disagreements are over you wanting sugar). I am a pretty strict parent, but my rules are only there for your safety and health. I can handle a lot of whining and am really good at sending you to your room. But you are both suborn as mules. You don't seem to learn from yesterdays mistakes and  Mommy time outs seem to becoming more frequent just to maintain some sanity.

    And then, at the end of the day, after running ten errands with crabby kids who don't want to be in the car, breaking up a hundred fights over who's toy is whose, after going to play groups for some entertainment only to leave more stressed from trying to control my kids in public, after carrying Fiona on my hip for the last 5 hours because she refused to be put down, after making calls and setting up appointments having to walk circles around the house to get away from the noise, after cleaning up the huge spill that enviably happens every day with either a drink, or sauce or a glass jar of jelly. I look at the house. And I look at the chair. And I pick up the toys on the way to the chair. And here I crash, and let my self get sucked into the 1,2, 3 hours of me time I am barely awake for, to my little addiction I have to the Internet. Talking to friends, catching up through photos, indulging in some lift my spirits reading and writing some of my own. And recently, realizing though all of that is refreshing, I have been missing the most important kind of reading and conversation. With God. While starting my day with devotions is not an option since I am woken up anywhere between 5 and 9 by you guys, I can at least end my day with it. So maybe the house doesn't get cleaned and my husband thinks my priorities are a little skewed. But I hold on to the little sliver of sanity I still have. The tiny bit that hasn't been snapped by a whine just yet. And I reflect on the good moments. Like Breiden, you pointing out that "Woody and Buzz are best friends, just like me and Gav".  I make my list of what needs to be done tomorrow, the list that I still will manage to forget to do half of, and refresh my self for life as a stay at home mom. The bittersweet life as a stay at home mom.


    Remember this, boys, one day when your amazing wives-to-be are staying home with your future kids. Well, unless, you turn out to be millionaires who hire nannies and maids and she spends all day spending your money and getting pedicures. Then, and only then, can you give her hell that she has it better then you.

    S.W.A.K,

    Mom

    Thursday, September 15, 2011

    Our Girl

    Dear Fiona-

      You love us. You know your family. Though no words have left your lips, you tell us daily. Your smiles and giggles that you only give us. The dive bomb snuggles where we can feel you smiling, hiding in our chest. And the death grip you have on our clothes if we try to put you down or hand you over to someone else. No, you only want Momma or Daddy.


    Nothing makes you laugh harder then your brothers. Its a game they play, try to make Fonkers laugh. Oh ya, and thats your newest nickname from Breiden. He stole it from Daddy. They run around you and wrestle for you and blow raspberries on your soft baby belly. You laugh hysterically. Much different from the giggle you have for me and Daddy. No, this laugh is uncontrollable.


    Two teeth have popped through in your mouth, the little one in the front making you look more like a toddler then a baby. I hate watching you struggle to learn to be a toddler. You have no interest in doing anything for your self, and are just enjoying the baby life. Girlie, I don't blame you. But I watch you watch your brothers and I know that you want to play. Its worth the hard work. And we'll keep pushing you to try. 


    You're a tease. You smile and reach for people, but turn away when they reach their arms out to you. You have become uber comfortable perched on my right hip, and rarely want to leave. Unless its for Daddy. You'll always go to him.


    We have a long roller coaster ride ahead of us, with lots of ups and downs. But lately, we've just been climbing up. Your life keeps opening doors and bring new people in our world. Kind of ironic that something that once seemed to just slam doors closed, I know see is opening doors. I am excited to see where these doors lead to.


    I am sure there is a drop somewhere up ahead. But baby, we have now. And now is good. And just as He always is, God will be there for the next drop. And the one after that. And the one after that. We might drop, but we'll never fall off the track.


    S.W.A.K,

    Mom

    Monday, September 12, 2011

    Dear G, B, and Fi-

    Sweltering heat doesn't phase you, you are Florida kids through and through. While my mind is deep in dreams of crisp fall air, changing leaves, and apple cider, we spend our days wiping sweat and diving in pools. Or flipping in. Gavin, at 3, you are some little dare devil gymnast.





    We are making new friends. Friends with designer genes and almond eyes. Its nice to hang with people traveling down the same road we are. Playgroups that we can be our own kind of normal, of little girls that aren't judged or measured by what they can or cannot do- the normal that is feeling more and more...normal.  I now walk into your room, Fiona, every morning to you sitting up in your crib. You've mastered pulling yourself up from laying down. Its a sweet change, to make eye contact with you above the crib rails. And just one more week till we can officially leave your braces off all day. While I don't have any pictures of our morning embraces, I found you sleeping, booty in that air, on your knees. Ya, up on your knees that you had fought to get up on earlier that day in therapy.



    Breiden and Gavin, you want to help us with everything. Little men trying to be my big men. You test my patience as I can't let you help with most tasks, but your enthusiasm and innocent interest in learning, I love to see.  I just wished you listened better when I said no.

    Though our Falls my not be exactly like my dreams, one thing that is the same no matter where you are in our country, it's football season. And my Packer fans are ready to cheer.


    And Papa is back to volunteering with high school football. He just couldn't stay away from it. If for no other reason, I hope you boys play football to make your Papa proud. Although, I know he is proud of you no matter what you choose to do. Except maybe soccer. Which, sorry Dad, looks like soccer is in their future too because the boys have to do whatever Henry does.

    I try to predict what you kids may be when you are older. Gavin, I see you doing something analytical, while Breiden, I think you may go into something a little more free spirited like writing or teaching. Even the way you play with toys shows me that your minds work that way.



    Fiona, as of right now, you may be going into demolition.

    We don't get the opportunity often, but I wish we did it more. We have found our spot. A place that combines dinner and music and dancing and site seeing and to top it off some frozen yogurt.We sit by the dance floor, as G and B, you run and dance and check out the gator and turtles and fish in the pond, as Fiona bounces in her highchair to the music and Dad and I soak it all in.  I want to save up for these nights more often.


    We stayed way past bed time, till you had nearly danced yourself to sleep. B, you were a little crabby, and we slow danced together, while Gavin busted some crazy moves to Mustang Sally. Fiona, you bounced that little butt, itching to get out there.

    Halloween costumes are ordered (thanks to Papa) so I am pumping up Batman and Captain America like crazy so you won't change your minds between now and all the Halloween festivities. I cannot wait for October.

    S.W.A.K,
    Mom
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