hungry?

Grocery shopping is the worst!  It was always such an event in my house. I like to think that maybe I’d enjoy it if I could do it alone, but my guts says I’m kidding myself.  Our trips were a hassle and I always felt guilty. Perhaps it is the stereotypes we grow up with, I was supposed to be the little lady who filled the cabinets and prepared meals.  That leads to another issue, I also hate to cook. It’s a miracle that someone wanted to marry me. I’m no June Cleaver.

On the bright side, I am always happy to clean or organize cabinets. Make a big mess and I’ll clean it with a smile.

Our grocery shopping trips followed the same routine. My husband would come along to push the cart. Together we wander up and down the aisles tossing stuff in the cart. Then we would get to the checkout and stand in line forever. My husband would unload 95% of the stuff to be checked out while I attempted to help. Afterwards he’d push the cart to the car and load it up.  Once we got home the process started again and he would take trips unloading all the bags while I held the door. I made a point to always put everything away since he did all the work up to that point.  Once my son was born it became even crazier since he was hauling groceries and our son.  UGH

When I was pregnant I decided to first try Peapod.  I went to the site and browsed the aisles of food from the comfort of my couch.  All I had to do was click what I wanted, select a delivery date and before I knew it the truck pulled up and brought my groceries to my front door.

It was amazing. I was in love. 

Using Peapod meant one less chore for my husband and one less thing I had to depend on others to do.  When I lived alone I would grab items from the store if there was someone to take me, otherwise I’d just buy a few things here and there from a store within walking distance. I’d buy as much as I could carry.  I’m sure you can imagine how much milk and protein I was getting during those years.

Peapod is not always cheap. You are paying for the convenience but I have found ways to make it work. I watch for sales on the items we typically purchase and then I’ll buy a bunch.  They offer great promo codes on their Facebook page and with each order you get a coupon for next time.  I usually end up paying about $3 for my delivery fee which seems well worth it. We occasionally will take a trip to the normal grocery store but it’s become clear that it is not worth the hassle. I can now do all our grocery shopping while eating my lunch at work, on my phone app right before I fall asleep in bed, in the car waiting for train, ANYWHERE!   

During the winter months I have always dreaded the wet, slick linoleum floors at the grocery store even though my husband is gre

at at giving me a shout out for upcoming wet patches. I bet the majority of you have never thought about how the produce aisle is risky terrain!  From dragging a baby out in the cold, having my husband do all the work and the waste of precious time it took out of our evenings – it just was not worth it.

Next time you feel like grocery shopping from your couch, give Peapod.com a try and use the offer above.  I promise you’ll love it too.

var _gaq = _gaq || [];
_gaq.push([‘_setAccount’, ‘UA-24668346-2’]);
_gaq.push([‘_setDomainName’, ‘.squarespace.com’]);
_gaq.push([‘_trackPageview’]);

(function() {
var ga = document.createElement(‘script’); ga.type = ‘text/javascript’; ga.async = true;
ga.src = (‘https:’ == document.location.protocol ? ‘https://ssl’ : ‘http://www’) + ‘.google-analytics.com/ga.js’;
var s = document.getElementsByTagName(‘script’)[0]; s.parentNode.insertBefore(ga, s);
})();

meow

Our house has been crazy.  My son has a bad summer cold, cough and pink eye. He is also getting his last two teeth so he’s an uncomfortable drooling machine. Imagine doctor appointments, a needy toddler, screams over eye drops and frustrations over missed work {my husband gets the gold medal this time, since now he’s behind}.  I’m sad to report there is more. My mother-in-law had her knee replaced today. I received an entire year’s worth of contacts in the wrong prescription which led to phone calls and hassle.  My brakes are being redone after a verbal wrestling match over a bad attempt at round one of replacing them.  Oh, and I squeezed in an orthodontist appointment over lunch. That’s life and it’s only Thursday.

A few days ago I saw a bunch of Facebook posts about a kitten diagnosed with AMC. At first I giggled, it is kind of funny and bizarre. 

I got the link again through web alert searches I follow. In the past I read something about Arthrogryposis being called Curly Calf Syndrome but never gave it much thought. Once this link crossed my path again, I actually took the time to read it.

This sounds weird, but it made me really grateful. I am glad to be human.

We have doctors, therapists, family, splints, braces, casts, and the world cheering for us to succeed.  If this Tiny Tim critter crossed our paths, many would just say, “ehh it’s a cat, put it to sleep.”  I will confess that I would struggle with the same thoughts. I’ve watched a lot of episodes of Hoarders with crazy pet owners. Sometimes it’s best to let them go before they end up in the wrong hands, living in filth and found under a pile of junk. Cold, I know. I’ll blame TV for my icy heart.

Thinking about animals with AMC made me think of past operations and the fantastic care I received at Shriners Hospital in Chicago. The hospital staff taught me when an operation made me miss school. There was always someone around – perhaps a nice nurse, a friendly Shriner or maybe a crazy clown, someone to make me smile when I missed my mom and wanted to go home.

They let me pick out my favorite scratch-n-sniff sticker to stick inside my mask that would put me to sleep for an operation. The examination room ceilings were decorated in happiness. I can close my eyes and still see colorful posters with rainbows, horses and big fluffy cats.  I would lie on the bed and gaze at the posters while the vibrating saw cut off my cast. I remember it looking like a pizza cutter spinning super fast. It was not scary though. The doctor would show me how it wouldn’t cut my skin, reassuring me that it stops when it touches anything soft. The time they took to address my fears made me strong. Taught me to trust.

My memories of surgery, hospitals and therapy are happy. I was drenched with love, compassion and the riches of people eager to use their talents to better another life.  Remembering my childhood makes my bad week seem not so bad. Life is really good.

For those of you who have experienced an operation, therapy and/or the world of casts, braces and more…what’s your favorite memory?

var _gaq = _gaq || [];
_gaq.push([‘_setAccount’, ‘UA-24668346-2’]);
_gaq.push([‘_setDomainName’, ‘.squarespace.com’]);
_gaq.push([‘_trackPageview’]);

(function() {
var ga = document.createElement(‘script’); ga.type = ‘text/javascript’; ga.async = true;
ga.src = (‘https:’ == document.location.protocol ? ‘https://ssl’ : ‘http://www’) + ‘.google-analytics.com/ga.js’;
var s = document.getElementsByTagName(‘script’)[0]; s.parentNode.insertBefore(ga, s);
})();

OMG we’re pregnant

I always wanted to be a mom. I like kids and I think putting someone else first is good for the soul.  Without kids our lives would be centered on everything we want and need – which initially sounds delicious but eventually unfulfilling and empty. 

I anticipated the early years would be tough. My husband would have to do a lot to help. Deep down in my gut I felt it was worth a few rough years for a lifetime of memories. I hoped he would feel the same once it was all said and done.

It was St Patrick’s Day when I found out I was pregnant. I was happy. scared. mad. excited. terrified. giddy. I felt a million emotions during those first moments as the positive pregnancy test stared back at me.  Crap, what did we do?  Can we handle this?

I love the line from the movie from Juno, “That ain’t no Etch-A-Sketch. This is one doodle that can’t be un-did, Homeskillet.”

True that.

My pregnancy went well. Not knowing anyone else with my disability, I had no idea what to expect. I tried to be careful about not gaining a ton of weight.  I knew that would make things harder on my body and my arms with the crutches.

My biggest drama over the 9 months was a reoccurring fainting spell. The baby must have been cutting off circulation and it caused me to faint. The doctors first thought it was a blood sugar issue, a heart problem and even dabbled with thoughts that it was from a lack of protein. All the tests came back that I was perfect, so it is a mystery.  I lean toward a circulation issue because it always happened when I was sitting a certain way.  Regardless, it was scary.

I stopped walking without my crutches around the house because my back became sore. I think the pull of the belly caused me to move differently and it was pulling weird muscles. Once I exclusively used my crutches, my back stopped hurting.

I met with a genetic counselor in the beginning and they really didn’t know what to tell me.  She had no idea if my baby would have AMC but she said my odds were very slim.  I had ultrasounds every four weeks. 

Not a day passed where I ceased from whispering up a prayer that his forming body would be strong so he could make a fist, flex his ankles, jump, run and be a wild little boy.  I’ll never forget the first time I saw him sucking on his clenched fist in an ultrasound – amazing! So thankful.

My last two weeks came with major swelling. I know that’s common in pregnancy but for me it was extra bad. My feet were so tight I felt like the skin would crack. Wearing shoes became an awful experience. It took about a week after my son was born before it got significantly better.

My OBGYN was unsure about giving me an epidural and so I contacted my first doctor and Chief of Surgery at Shriners Hospital back in 1979.  It was amazing to talk to him and tell him about my life over the past 30 years. He anticipated that everything would go fine and there was no reason for a c-section unless the unexpected happens, which can be the case for anyone. He was pretty old (I’m guessing over 75) and pretty much retired but still helping out at the hospital. It was great to have the opportunity to talk and thank him for all he has done for me. Oliver was not even here yet and had already managed to trigger opportunities – making my life a bit sweeter.

On a Saturday night in the middle of watching Cops I went into labor.  Dr. Millar was right and it went perfectly. I personally was scared the whole time about delivery but with the epidural it was a breeze. Looking back, the 9 months of pregnancy were worse. Some girls love being pregnant, I was not one of them.  There is nothing fun about feeling tired, fat, emotional and having to wear elastic waste pants that come up to your boobs.  BELCH.

The first few nights and adjusting to life with a baby were rough but precious.  It was a wild ride of emotions and trial and error but that’s for another day, another blog post.  I need to go smooch my little boy.  😉

var _gaq = _gaq || [];
_gaq.push([‘_setAccount’, ‘UA-24668346-2’]);
_gaq.push([‘_setDomainName’, ‘.squarespace.com’]);
_gaq.push([‘_trackPageview’]);

(function() {
var ga = document.createElement(‘script’); ga.type = ‘text/javascript’; ga.async = true;
ga.src = (‘https:’ == document.location.protocol ? ‘https://ssl’ : ‘http://www’) + ‘.google-analytics.com/ga.js’;
var s = document.getElementsByTagName(‘script’)[0]; s.parentNode.insertBefore(ga, s);
})();

buttons

Kids love crutches. They always want to play with them and ask lots of questions. Most of the time my son Oliver has little interest in them, he is around them every day. He’s into trucks. He has pointed to my crutches and said “momma” so I know he gets that they are mine. He also points to diet Mountain Dew cans and says “momma” which makes me cringe. *addict

I anticipate there will be a day when he’ll ask more questions. There will also be a day when he is a teenager and will wish his mom was normal. Being different at that age is not cool and parents in general are lame at 13, so my odds are really stacked against me.

In the last few weeks he has become more observant. The other morning I was fixing his hair and getting him dressed before going to daycare. He grabbed my hand and stared at it. He poked my wrist where it is bent and then said “momma” and smiled at me. I almost cried. It was another sign he was getting older and his grin was so dang cute.

Oliver inherited a shirt with way too many buttons. It’s a total hassle and in my dream world we would use Velcro, seems much simpler if you ask me. This shirt is cute though and I like cute clothes. I’d give up food and running water if it meant another outfit. So I slowly tackled the buttons that morning while he was distracted by cartoons. That night I went to give him a bath and my husband left to run some errands. Here I was battling this shirt again and let me tell you, it was looking a lot less cute at 7pm on so many levels. After a day of drooling and playing outside it was wet and gross. I quickly learned that damp clothes are even harder to unbutton.

My son leaned against me and let me fight my way down the row of tiny little buttons. I was about halfway down when he looked at me with his big blue eyes and grunted, “momma stuck.” He seemed concerned for me and my battle with his shirt. During perfect moments like that, camped out on the floor next to the tub, it seems like he knows more than we think. I like to believe that God gave him a little reminder right before being born that he needs to be patient with his mom. Once and awhile he remembers and gives me the extra time I need. Good boy Oliver. Good boy.

Here is a video of a little puddle splashing. Not a battle worth fighting that day so I decided to join in. Enjoy! 

var _gaq = _gaq || [];
_gaq.push([‘_setAccount’, ‘UA-24668346-2’]);
_gaq.push([‘_setDomainName’, ‘.squarespace.com’]);
_gaq.push([‘_trackPageview’]);

(function() {
var ga = document.createElement(‘script’); ga.type = ‘text/javascript’; ga.async = true;
ga.src = (‘https:’ == document.location.protocol ? ‘https://ssl’ : ‘http://www’) + ‘.google-analytics.com/ga.js’;
var s = document.getElementsByTagName(‘script’)[0]; s.parentNode.insertBefore(ga, s);
})();

my dad

He often comes across as gruff. He says things like it is and doesn’t waste time trying to be politically correct.  He also might be viewed as a harsh critic. Since his approach isn’t eloquent or always tactful he can be mistaken as mean.  Hold on, I’m going someplace nice with this.  I promise.

It’s because he cares.  He wants those he loves to be their best, even though he isn’t perfect and it is a bit hypocritical at time. He sees what others can do if they would just try.

That’s my dad.

This was the case growing up. I can still hear my dad’s voice ringing through my head, “throw those crutches away and walk. Gotta use those legs if you want them strong.”

If my brother was outside helping my dad stack wood for the fireplace, I was pulled out there too. Maybe he stacked ten logs to my two but I was out there.

When my grandpa built me a standing board with arms to practice standing by myself, my dad would scold me to keep going when I wanted to quit.

If I was kneeling on a chair while drying the dishes he would be the one to tell me to stand up and use my legs.

My mom was the glue of the house. She took care of all the doctor visits, kept me company during surgeries, knew the things I needed, taught me how to put on my socks, and attended 18 years of therapy by my side. She was the nurturer, the helper and my friend.  I could rave about my mom for days. That’s another post.  A box of Kleenex.  Another day.

I think both roles are super important when raising a disabled child. I am scared to think what I would have become without the drive from my dad. I’d probably be lazy. I thought he was mean back then, he was pushing me too hard, he didn’t understand. 

As a kid, it was natural to gravitate towards the things that were easy.  I could have gotten used to having things done for me really fast.  I still like things to be easy.  Don’t we all? Accomplishing the things I was pushed to do was an amazing realization.  It took time and I had to find my own way but I did it.  There were also things I just couldn’t do. That was okay too, just the reality of life but at least I tried.

PT /OT visits, teachers, friends, pastors and my family all impacted me but my dad ignited my drive and zest to make things happen.  It was the key foundation for all the other people who met me down the road. One of my greatest gifts.

Everything I know these days seems to be from Facebook.  A friend of mine recently had this quote and I dug it.  In some weird way it made me think of my dad.  He probably didn’t think he was really making a big impact but I like to think he was wrong.

“If you think you’re too small to make a difference, you haven’t been in bed with a mosquito…”

var _gaq = _gaq || [];
_gaq.push([‘_setAccount’, ‘UA-24668346-2’]);
_gaq.push([‘_setDomainName’, ‘.squarespace.com’]);
_gaq.push([‘_trackPageview’]);

(function() {
var ga = document.createElement(‘script’); ga.type = ‘text/javascript’; ga.async = true;
ga.src = (‘https:’ == document.location.protocol ? ‘https://ssl’ : ‘http://www’) + ‘.google-analytics.com/ga.js’;
var s = document.getElementsByTagName(‘script’)[0]; s.parentNode.insertBefore(ga, s);
})();

summer camp

I was around 11 years old the first time I attended summer camp.  I remember thinking it was a long drive to get there but once we arrived I wished it could have been a bit longer. Spending two weeks alone with strangers seemed scary.

Easter Seals had two camps in Wisconsin when I was a kid. Camp Wawbeek and Camp Pioneer. {I went to the website and things have now changed. I’m going to stick with referring to what it was back in the day}

I found that Camp Wawbeek offered a lot of assistance and the majority of campers were in wheelchairs. We stayed in one huge dorm with beds lining the walls and the center was kept open for chairs to get through. I enjoyed my time at Camp Wawbeek but did not feel like I fit in. I was young and use to being surrounded by my “normal” friends.  It sounds awful but I felt like I was not disabled enough to “belong” and wanted a more challenging environment.

The next year I went to Camp Pioneer. I loved that it was more rugged.  There were several cabins and we were divided by age and gender. We did amazing things that I would have never done in the real world. 

Hoisted up trees to experience the thrill of a zip line course. Camped in the woods with nothing but our sleeping bags and the stars above. Went into town as a group to see the 4^th of July fireworks. Canoed to an island and spent the day swimming. Fished. Sang songs around campfires. Water balloon fights. Arts and crafts. Movie nights. Hiking (on smooth easy trails). Ropes courses. Going to attractions in Wisconsin Dells.

It was so good for me to be thrown into a sea of strangers. I had to make new friends. Learn how to ask for help and not have the comfort of my parents ready to swoop in and save me.

I made great friends who became my penpals throughout the year until we met again at camp.  If only we would have had Facebook it would have been so much easier. I can’t imagine writing a letter, buying stamps and walking to the mailbox now.  Ridiculous!

Every year camp wrapped up the season with a fancy dinner and dance. It was the highlight of the two weeks and everyone loved that night. Usually by then all of us girls had found some boy we liked and we would pester them at the dance.

I always crushed on the camp counselors. They were older and from other countries {Poor Vlad from Russia, I probably stalked him}. The foreign accents were the key my heart. *eye roll 

Camp allowed us kids a chance to grow and make friends with other kids who had disabilities. For two weeks we were the normal ones.  It also gave the parents a much needed break from raising a child with special needs and provided a chance for some quality time with their other children who may have felt overshadowed by the attention their special needs sibling often required.

Now that I’m a mom, the thought of my son going to summer camp sounds pretty good.  Quiet house. Me time. Sleeping in on the weekend. Well, that is after I let myself have a good cry on the ride home after dropping him off.  🙂

For more information please visit:  http://camp.eastersealswisconsin.com

var _gaq = _gaq || [];
_gaq.push([‘_setAccount’, ‘UA-24668346-2’]);
_gaq.push([‘_setDomainName’, ‘.squarespace.com’]);
_gaq.push([‘_trackPageview’]);

(function() {
var ga = document.createElement(‘script’); ga.type = ‘text/javascript’; ga.async = true;
ga.src = (‘https:’ == document.location.protocol ? ‘https://ssl’ : ‘http://www’) + ‘.google-analytics.com/ga.js’;
var s = document.getElementsByTagName(‘script’)[0]; s.parentNode.insertBefore(ga, s);
})();

take a picture, it lasts longer

My fellow AMC mom and Facebook buddy Sarah Kovac posted this video on her site. I loved it and wanted to share. 

 

Oddly we both watched this video and first connected with the staring girl. 

Maybe it is because like I shared, in my mind I am “normal.”  Who I am is all I know so it makes sense that there are days where I don’t feel different. 

At the end of this short clip, I also connect with the guy jamming {and I secretly would kill to be his friend…likes Radiohead, gets to do awareness videos..ummm awesome}. He is just waiting for the subway and rocking out. It’s no different from the guys sitting around with guitars and an open case to catch spare change or breakdancing to kill time. 

He doesn’t want to be eye-balled and classified by his wheelchair and Cerebral Palsy or in my case by my AMC. That is not what he is all about. It might impact how he lives, but there is so much more. 

I love that Thom Yorke from Radiohead is using his fame to bring awareness to the deck of cards he was dealt in this life.  I hope he does more.

var _gaq = _gaq || [];
_gaq.push([‘_setAccount’, ‘UA-24668346-2’]);
_gaq.push([‘_setDomainName’, ‘.squarespace.com’]);
_gaq.push([‘_trackPageview’]);

(function() {
var ga = document.createElement(‘script’); ga.type = ‘text/javascript’; ga.async = true;
ga.src = (‘https:’ == document.location.protocol ? ‘https://ssl’ : ‘http://www’) + ‘.google-analytics.com/ga.js’;
var s = document.getElementsByTagName(‘script’)[0]; s.parentNode.insertBefore(ga, s);
})();