Sunday, July 31, 2011

The weekend finale

There is a little bit of magic in a warm bath billowing with bubbles. Magic that truly washes away the stress from the day month, relaxes you down to your sudsy toes, and leaves you thinking about things like books and red wine. If only I had red wine.

A Tree Grows In Brooklyn- Betty Smith
We have had rare Sundays where my husband has been home lately. And hopefully, with a possible change in his work schedule, we will be getting more of them. I can't begin to describe how nice its going to be to have my husband home on the weekends. And to not use vacation days for birthday and Christmas parties. This Sunday, Mr. Right let me get some kid-free time. I wish I had used it a little more creatively then just browsing at Target, but it was still nice to be out, with no car seat buckling, toy begging, drink dropping kids.

The same kids that I was ecstatic to see when I opened the door. The kids that are just as excited about groceries as they are about Christmas presents. Frozen pizzas and milk get the same enthusiasm as a new train. Sundays seem to hold some magic too. That relaxing, family indulging magic. Where we eat together and play together and the kids are in bed by eight. I'm just blacking out all the whining and injuries in between.


Cheers to family and Sundays and stress-cleansing bubble baths. If only I had that glass of red wine.

Saturday, July 30, 2011

What a boy does to your heart

I had in mind this cute and funny idea for a post today. And all day, I made mental notes of what I was going to write and wrap it up with some little joke about Gavin being so damn clumsy.

For those who aren't privy to having a Thomas loving, wrestle playing, pool jumping, car tire peeing little boy, let me clue you into what its like. They get hurt a lot. With risks, comes consequences. But thanks to their testosterone,  getting hurt doesn't always involve band-aids and tears. Actually, a lot of the time it is accompanied by laughter and repeating the same action that they just horribly failed at the first time. The way I see it, you have two choices as a mother of a boy- be overly anal and jump up every time they move, go gray within a year and lose sleep every night... or relax, stay close by but let them get hurt, and some what keep your sanity. I prefer option b. I have learned to wait for their reaction to react. To let them do things where they could possibly get hurt, but supervised and with back up plans.

Gavin, nicely put, isn't very graceful. This kid gets hurt more times then I can probably keep track of (which I tried to today), but has a high tolerance for pain and a rebound rate faster then I can blink. Its common for him to "cry" and I say that loosely because their are no tears, just that whine. But a real cry, those are the only times I am concerned. The only time my heart stops, and my muscles move before I can comprehend what has happened.

Here is a little glimpse at a day in the life of Gavin...

8:30am- Slammed a toy into his finger
8:45am- Dropped a toy on his foot
10am- Got too close to Fiona and she kicked him with her bar
12-1- At the pool and managed to stay injury free
1pm- Dropped his scooter on his foot
1:30pm- Hurt is finger, cause unknown
3pm- Got stuck in the playpin
3:30pm- Slipped on a Matching Game card
4:15pm- Burned his mouth on his oatmeal that he insisted on eating right out of the microwave
5pm- Dropped another toy on his foot
5:15pm-Slipped on a toy car
6pm- Got stuck between the couch

6:30pm...
Everything went in slow motion. I saw the chair falling before I could put Fiona's spoon down. He was standing on his chair at the dinner table, after me telling him numerous times to sit. I had my back slightly turned, feeding Fi on the other side of me, and had no way of preventing what I saw coming. I still don't know how the chair got off balance, but down it went... and he had a fork in his hand.

There were tears.

He landed on his but, sitting on the back rest of the chair, the chair tipped on its back. My shoulders relaxed from the tense position they took when I saw it coming. But he was screaming more then he should for how he landed. He should be fine. That's when I saw the fork, and the blood. Right in the bottom of his chin, he had jabbed himself. A perfect fork tooth slice all the way to the bone. He wouldn't let me touch it, but I had to clean it. I had to try to get the blood to clot so I knew how serious this was. He was less then a half inch from stabbing himself where there was no bone, where the fork would have gone straight into the top of his throat.

Its one of those things where you are shaking about what could have happened, but somewhat relaxed because it didn't happen. Some hydrogen peroxide, a little pressure and a band-aid and its all okay, minus the soreness and the bruise that is sure to follow. But he could have stabbed his throat. We could have had another family member up at the hospital tonight. I wanted to yell at him, "WHAT WERE YOU DOING! I TOLD YOU TO SIT! YOU COULD HAVE DIED AND ITS YOUR FAULT!" Put the blame on the three year old. Ya, make the hurt,scared kid feel even worse. My fright turned to anger at my kid who doesn't listen to me.  I sat him back on the chair while I finished feeding his sister. We didn't talk. I had to collect my self, go through the stages of grief, before I could comfort my baby who is too young to realize the consequences of his actions. There is only so much you can do as a parent to teach. Sometimes they have to learn on their own why you make the rules you do, but I don't like when the way they learn could have been deadly. I don't like seeing my clumsy boy get hurt.


He was back running around shortly after and got hurt one more time before he was safe in his bed for the night (got jabbed in his stomach with his hockey stick... not by his brother, he ran into the couch with it). They say when you have kids, its like watching your heart go walking around outside your body. And daily, I watch my heart get cut, bruised, banged, and crash. Boys, they give you a tough heart.

Have I mentioned that Gavin has lost both of his big toe nails this summer. Highly considering putting the twins in ballet. Husband approves.

Friday, July 29, 2011

A lesson in growing up

Its so easy to make them happy right now. A piece of candy, a glass of lemonade, a dollar here, a dollar there. Its not like they are asking for i-Phones and X-Boxes. But one day they will. So, I figured I better start teaching them the value of a dollar young. Like I said, its so easy to just give them what their heart desires right now. But I truly believe parenting isn't about making your kids happy. Its about molding little humans.

Crafty me made chore charts that were such a big hit, we spent over a half hour beaming over them, "What day is this mom? And this?... This is my bed, and my toys, and my clothes and how I brush my teeth" Over and over this conversation went for well near an hour. Stickers are like a thousand bucks to kids. For a week and a half, stickers were the perfect reward for completing their four chores a day.




But a couple days ago, my lazy-productive day, every store we went to, there was begging for the typical stuff. A lolly pop. A dollar toy. I held my ground. And then it hit me. Time to teach. When we got to Target, of course we had to go look at the Thomas the Trains. But when the begging started, I had a plan. "Sure, you can get this $10 train. Every week you fill your chore chart with stickers, I will give you a dollar. Once you have 10 dollars, you can buy the train with your own money. "

They were ecstatic, and I was beaming with good-parenting pride. However, I quickly realized 10 weeks is not time appropriate for 3 year olds. They came home wanting to clean everything to earn their money right away, and I knew if I made them wait 10 weeks, the lesson would be lost in misunderstanding. Since, I have switched from a dollar a week to 50 cents day. Charlie threw in the idea that when buying day comes, to offer them a more expensive toy and see if they can learn the lesson to save to work for something bigger. I'm sure the first time, they are going to want the instant gratification of whatever they can afford right then. But over time, I am hoping they will learn to use their money wisely. All so one day, they are not swamped in debt and ruining whatever is left of our economy. 

...

Thankful Thursdays hasn't really been falling on Thursdays lately, at least on here. Being grateful and honest are the two most important attributes in our household, and so saying thank you and what we are thankful for is a daily routine in our home. 

Just as every week, there is so much bad stuff going on, and so much to be thankful for.

Thankful that Fiona's ear tube surgery went smoothly, and better then anticipated (  I swear, this girl is a champ in surgery) Not only was everything perfect, but they were able to put in larger tubes then they had originally thought they would be able to. This means, she probably wont have to have another surgery in between now and getting her permanent tubes. Thankful for one less surgery to worry about in her future.

Pre-surgery


Two Hours Post-Surgery


Thankful that my mom got her butt to the hospital. Her blood thinners started to work too well, and she was bleeding internally. In between Fiona's recovery, I went up stairs and visited with my mom. She is doing okay, they are still running tests, doing blood transfusions and trying to get the right level of meds to keep her blood from clotting but not making it too thin. Keep her in your prayers, its just a stressful situation all around.But I am so thankful she got herself to the hospital in time. It was a little weird, being so comfortable, at home, in the hospital. That two of my family members were there. That when a nurse came by for an x-ray with my mom, I knew what I needed to do and what was being done like it was an every day thing for me. Not something I ever wished for, but thankful that when expectant health problems arise, I at least can take comfort in that I know my way around the hospital.

Thankful that there is a crazy three week tournament going on at my husbands work and somehow he worked  less then normal the past three weeks. He has been getting a good fill of fishing and golfing. And speaking of which, he brought home some black tip shark meat that he caught. Never thought I would say this (because I never thought I would ever try it) but it was really really good. Thanks Tommy for the great recipe.



Thankful that the boys are starting preschool next week. For the two morning's of alone time with the princess, and the opportunity to take some speech therapy classes for her. Thankful that the boys are so independent and are the type of kids who aren't afraid to go off and explore the world. Also, a little sad that they are so quick to leave me standing in the door way. 




Thankful for this opportunity to stay home with the kids.

Thankful that my husband has a good job.

Thankful that we have a pool we can escape to in this summer heat right in our neighborhood.

Thankful that the colds every one had the last two days are already going away.

Thankful for my new running shoes. Now I just have to put them to use.

Thankful for a date night last night with the better half, and the gift card we still had from a Christmas  present that allowed us to afford to go out to dinner last night.

Thankful for that glass of red wine I enjoyed last night. 
What are you thankful for today?

Wednesday, July 27, 2011

Overcast, Sunny, Lazy, Productive Day

It was one of those days that started way too early after a day that ended way too late. Three stuffy kids, two stuffy adults, and one teething baby. Our little morning ritual, in which ever of the boys wakes up first crawls into bed with me, is what makes waking up worth while in my house. We try to do this as quietly as we can so daddy doesn't know, cuddling till I am awake enough to open my eyes. Some days I get a good extra half hour like this, but today, instead of climbing in bed, Gavin whispers in my ear "Fo-na's awake".


So, crusty-eyed and sleep delirious, I started my day too early. With kids that were cranky from less-then-perfect sleep themselves, noises dripping and throats itching. Through the blurr of the frosted TV cabinet, I watched till I saw double digits on the clock on the cable box, woke up the other half, and took the boys to the pool. Best cure for some runny noises? Jumping over and over in a chlorine filed pool.







I like the variations they chose, sometimes head first, sometimes flying like a bird... my personal favorite, the spastic jump. This picture is from our honeymoon


 These little suckers came with us, so I spent the majority of the time retrieving them from the bottom of the pool. What is the fascination with these trains that torment me to no end??

The weather was perfect. Warm but not hot, sunny but yet the sky was full of thick clouds, so no straight sun rays beamed down directly on us. Overcast and sunny.

And just like the weather, the day was one big oxy-moron. We didn't do much because I wanted the kids to rest, and I needed it too because I never escape healthy when the kids get sick. But yet, I still got a lot done today. Small errands that I was able to check off my list, lusting after my Canon Rebel that I will get someday while picking up birthday gifts and teething tablets, catching up on emails and unfinished conversations, and even managed to get the house clean at the end of the night. Well, for the most part.

I kind of forgot to mention that Fiona is getting tubes... Friday. Its hard to get worked up about a surgery after she dominated her heart surgery, laughed at her foot surgery, but its still a surgery and I should probably be taking it a little more seriously then I am. Or maybe I am just to a point that I not only believe but fully trust God knows what He's doing. Shes in his hands, and therefore I know she will always be okay. Even if I'm not okay. So surgery number 3, here we go. Prayers that it all goes smoothly. This will probably be the first of a few leading up to permanent tubes once she is bigger. All in the name of hearing, and we want princess to hear. Dying to see how her communication changes after this. Maybe mama will start to be used really for mama. Here's for hoping. And trusting.

Monday, July 25, 2011

Birth Order

I chuckle under my breath when anyone asks me if I take less pictures of my third child. Obviously, these are people who don't really know me. Not only is my third child kinda like my second, because as I much as I hate to lump the twins together, they are both my first, but there is the fact that my third child is my first girl. The princess. The one of the three that I can accessorize and dress up and put pretty things in her hair. Oh, and of course the little fact that my third I was told I could lose her. That God could take her before I was ready, when her little heart beat like it was going to pop out of her chest. Hell yes, I take lots and lots of pictures of my third. And I talk about her a lot. We tell her she is our favorite.


But we also tell B that he is our favorite.


 And G too.

They have my heart because they were my first. And because they think that I am the greatest woman on this earth. Mommy's kisses heal. Mommy's hugs comfort. Neither goes to bed with out a "minute" each of mommy cuddle time. Not knowing how to tell time works in my advantage. Some times the minutes are a bit short. Or sometimes a bit long.


I worry about the balance of importance in our house as Fiona requires more attention. I want them to know they are special with their 46 chromosomes. That although people don't come to the house to work with them, they are an important part of the family.



My worrying is totally unwarranted. No one gives Fiona more attention then the boys themselves do. They don't know about Down syndrome. They don't know why she wears special shoes or goes to special doctors. So to them, she is unjudged and perfect. I truly get the vibe that they know that she is an extension of them. Her triumphs are their triumphs. And its pretty obviously they don't think that the doctors and therapists are just there for Fiona, because they are ecstatic to talk to them every time they come.

A part of me itches for Fiona to take her nap every day, so its just me and my boys. Timing pool trips with nap time, the sleeping angel snoozing away in a shaded cool spot, as its just me and my two fish soaking up the sun. "Camp out" movies in the afternoon with popcorn and blankets, rain running down the windows as background noise. Eaves dropping on their conversations when they don't know I am around. Pretend and make-believe has really taken off lately, and everything gets turned into a fort. I crave my boy time not because its easier with just the older two, but because its specially different with just my older two.






Gavin and Breiden, you are our princes. The two crazy monkeys we couldn't live without. Watching you grow is the most rewarding thing in our lives. Thank you for making me smile daily, for being patient with me when I am not always patient with you, for being momma's boys. Okay, they are daddy's boys, too. And thank you for being the best big brothers our princess could ask for.I dread the day you are too big to both snuggle on my lap.

Sunday, July 24, 2011

Positive Sunshine

She's a little bit of sunshine,
                                                          She's a smile to light your days,
She will steal your heart 
and keep it with her warm endearing ways,
She's your precious little daughter,
With a sweetness from above
Who will fill your years with laughter
and your lives with lots of love
unknown

Heart defect. Clubbed feet. Down syndrome. Bam, bam, bam. With each diagnosis I road roller-coasters of hope and anxiety. My mind kept switching which one was worse. Life threatening, deformity, irreversible. I always knew the least of my worries was her clubbed feet, but there were moments I was completely devastated over it. No baby shoes, developmental delays, casts, braces, no quick fix. Her feet took away a lot of things you look forward too with babies like swimming and bath time. They brought complications to dressing her and even snuggling with her. And we still have a long ways to go.


Two years. These braces are going to be a part of our life for two years. She already knows how to wiggle a foot out. How much more difficult will it be to confine her in them when she can undo the laces with her hands? My hips are bruised from holding her. The bar is perfect level to get me there. I've learned to pick her up away from me and grab her legs, bending her knees up, to protect myself. She's learned to sleep like this.



She's learned a lot of things a baby shouldn't have to. Like to itch her open heart scar while its healing. Or to get her brace unstuck from between her crib rails. Its harder for me then it is her, but she is always reminding me there is no need to pity her. Life couldn't be any sweeter for my little girl. She's happiest when her brothers  are around. She blushes when her daddy smiles at her. And no one can sooth her like her mama. When she gets the chance to be in water, she is in heaven, poking and splashing. But she is just as content, sitting along the pool, laughing at her brothers. She has been through more then most, but complains the least.


She is happy- content. Stereotypes are sometimes true.


I watch her bare feet play in the carpet, when we give her her hour break every day. It is a picture of complete gratefulness. It feels so good to be free, to feel something on the bottom of her feet. I love watching those tiny pudgy toes explore. She bends her legs, stretching out what the bar keeps locked in place all day- hips, thighs, knees, quads, down to her toes. And you have never seen a baby as flexible as a DS baby. That low muscle tone allows for some high level yoga when she is out of her shoes. ( One of her PT workouts is the 100- but modified to the 10. My 11 month old is doing Pilates).

I hate the process of fixing her. I hate that this is a long process. But shes happy. And its not about me. She won't remember any of the bad stuff. She will only be grateful when she is running around with her brothers with straight feet. And her happiness is contagious.



disclaimer- The stereotype that all people with Down syndrome are happy all the time is far from true. They feel pain and are hurt by cruelty just like anyone else. With that said, I have found that a lot of people with DS don't dwell on the negative. A quality that more people should have. 

Friday, July 22, 2011

Zen

Little trains have become masters of torment in my house. They "disappear" frequently, hiding under beds, between couch cushions, sometimes disguising themselves in the mist of a pile of toys. And I am left scurrying around my house in desperate search for my little tormentors as my poor boys cry for their lost "fabrit" toy. "Where are you, Em-eel-lee? Where are you Tommy?" they call out, as if their precious toy will pop out with a "here a I am!". But they don't pop out. They don't answer back. And I am getting really tired of this sick game they play on me. So what did I do the other week? I bought even smaller trains (because they came in a book, and reading is good). Now I don't have a fighting chance. These suckers are really good hiders.

ity-bity train of torture 

Cleaning, organizing, decluttering has been my mission the last few days. Primarily, to zen my life, my atmosphere, but coincidingly also to give my tormentors less places to hide. I sit at my new desk (thanks, mom) in my clean room, new photo montage wall, little girl sleeping and boys playing with trains that for the moment are all accounted for, watching a thunderstorm dance on our lake. Zen.

Sean Ocean and Ashley Allbee, my house is slowly becoming a gallery of your work.

Our oh-so-small house is feeling not-so-small now that I have opened up some space. Kinda like if you want a raise, spend less money.... if you want a bigger house, have less crap stuff. The economical way of getting what you want.
...

Knowledge can be a buzz kill, or so my husband says when I have spent too much time reading. The punches have been flying at the Down syndrome community the past few days as I have read story upon story of ignorance and cruelty. Some of it large scale, like Denmark's announcement that they will be Down syndrome free by 2030 ( not that I wish anyone is born with Down syndrome, but seeing as it happens preconception and there is no way to prevent or "cure" it, the only way to be free of it is to encourage or demand abortions). Some of it is smaller scale, personal stories of people being mean to people. If I looked how it felt to read such things, I would have two black eyes and a broken nose.


I want to be someone who could just concentrate on the good stuff. See everything through pretty pictures that crop out the ugliness next to it. Dang empathy, it sucks me in to care. I can't ignore, stay blind, to the ugliness that surrounds us. This is my future, dealing with hurtful comments about my daughter not being worthy enough to exist and trying to educate people on why they are wrong. Figuring out what to say to a parent who laughs when her kid takes a cheap shot on how Fiona is doing something weird without just telling her that her and her son are a-holes and she should teach him manners- cause that's just anger, not educating. Figuring how to reach out, not react.

And then there is my biggest duty of all- teaching my own boys the importance of treating people right. Sympathy doesn't seem to come as naturally to boys as sarcasm and jokes do. Nor does it make them the cool guy in the group. ( There goes my blood boiling again, the thought that to a lot of people making Fiona the butt of their joke is acceptable). It starts off with calling people stinky face, or poop poo butt-favorites that I am trying to correct right now- to retard and gay. Its all fun and games, except that words still hurt and its at someones expense. People hate righteous people, but I hope that my boys be hated over being the hateful.



Thinking about investing in a punching bag to hit every time someone has something ignorant and mean to say. At least my arms will be in amazing shape. However, I don't think adding a large punching bag hanging from my living room really goes with the zen thing. So, I guess I'll just have to keep coming back here to clear my mind.

Say something nice and make someone smile.

I am thankful for my three kids who equally make me happy and drive me crazy.

 Thankful for rain that is filling our lake back up.

Thankful for my husbands job.

Thankful that my little sister made it safe to France and is having the time of her life.

Thankful Fiona's feet are straight. And, for that matter, that the boys are too.

Thankful that we finished watching Weeds and that I can finally get to bed at a decent hour.

Thankful for the people who stick up for those like Fiona. The community of special needs families and friends who know like we do that different is different, not bad. Thankful for almond eyes and vibrant smiles, and although its a double edged sword- that I think people with the extra 21st chromosome are amazing but I wish all people could have a normal healthy baby- I pray that God continues to bless people with the difficult road so that we can continue to work on being a more accepting world. Beauty and greatness come in all shapes, sizes, and chromosome structures.

Thankful that I have a platform to express my feelings on, even if no one reads or listens. Its therapeutic for my sole.

Thankful that GQ took the offensive content off their site, and hopefully learned something through all of this.

Thankful for a clean and organized house... well, at least most of it.

What are you thankful for today?

Wednesday, July 20, 2011

The GQ article

My hands are shaking and my ears are burning. This is the first real attack on my daughter that has hurt besides all the insensitive people who recommended aborting her. I know I am probably the 100th person to blog about this, seeing as I don't really read magazines or watch the news, so I am probably days or even weeks late in finding this out. But I have never wanted to lash out on someone so badly before in my life. I am thankful I do not know this man and have no way to contact him right this moment because I don't think I would be able to have any self control.

John B. Thompson wrote an article for GQ, oh- just July 15th so I am not too far behind, referencing Boston's style as "... Down syndrome style, where a little extra ruins everything."

It wasn't the Down syndrome style that really got to me- that was kind of like hearing the R word, it stings but I can get past it.  But the knife went through my heart with "extra ruins everything". As in my daughters extra 21st chromosome ruined her- she's trash, worthless.

Ha ha, Mr Thompson. I can just see the men reading your article smile, maybe even chuckle, at your heartless metaphor. And that just hurts even more. You are making my daughter, my life, a joke. You are pulling the stereotype card, making judgements without knowing, and possibly evening thinking the insensitive thought that you can make fun of these people because they are too stupid to know. But they are not. And neither are the people who love them. I am sure there were thousands of other metaphors out there that did not take a stab directly into my heart. You have no idea how much our families have to go through and how much our kids endure and how much they accomplish. Brain Skotko ( who did the radio interview with me for World Down Syndrome Day) says it best here .

I see the insensitivity- cruelness- everywhere. And each time is hurts a little more. I have been trying to not let it bother me, to be okay that people don't mean what they say- after all, I once spoke ignorantly and I would never say I ever hated or was cruel to those with special needs, I have heard my family and close friends freely use the word- but whether anyone means what they are saying or trying to be the cool person and get a laugh, the R word directly refers to people like my daughter. And her extra chromosome makes life a little more complicated, yes, but no less worthy, no less deserving of respect and love, not a destroyer of her life.

Tuesday, July 19, 2011

Bird houses and Dino bones

 Bird house painting- take 2.


I was a little more relaxed this time and the boys listened a little better this time. No mixing brushes in the wrong color or painting the floor. Well, the boys didn't paint the floor. Van Gogh swiped a paintbrush when I was not looking. And she painted. Her legs, the floor, her shoes, anything in her little arm's length.



An artist in the making. She knew exactly what to do with that brush. Thinking about investing in  one of these. Not so messy.

I forced us out of the house, to let my husband sleep in. Out into the heat for some fresh air. Well, heavy humid fresh air. We only lasted about an hour and half, but at least we got out. The water park (that costs money) next to the playground was kinda a tease as I sat in the shaded but still hot "Dino dig" - or so we call it although there are no Dino bones, just Seminole Indian artifacts. People floated by on the other side of the fence on the lazy river. We'll have to do that soon.



peeking over at the water park

  The boys aren't bothered by the heat, and run and play as they always do, going back and forth from the covered dig to the playground. Fiona and I stayed on the cool rocks, lusting over the lazy river.










Definitely doing something involving water next.

But I have the organizing/rearrange bug right now, and have destroyed our house in the name of making it more functional and comfortable ( sorry hunny) So keeping this short so I can get everything back in its place before my husband gets home.
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