Lemonade

I have a serious problem that some of you may be able to relate to... I can't say "no".  It really drives my poor husband up the wall.  I'm that super volunteer that drives herself mad.  I over schedule myself.  I complain when I've had no time left for myself.  I smile a lot.  The truth is I love doing things for others.  I love seeing new things and meeting new people.  It makes me happy to give to others and accept nothing in return.  That's why I can't say "no", I like saying "yes".

The past two weeks have been over scheduled due to my "yes" addiction.  I have grades due so my work life has been in overdrive.  I volunteer to be the leader of my daughter's girl scout troop.  I took a group of high school students to Ronald McDonald House.  I volunteered to work the school's fall festival.  I volunteered to attend my daughter's field trip. 

On top of all that, my husband and I are coordinating two days worth of diagnostic testing for Katie's preschool for this week and had to fill out 5 forms of questionnaires, find her birth certificate and print a current picture off, get her new glasses ordered and then picked up and call the four doctors who left me voicemails...  that's when I had a melt down.  I'm not writing this to make you feel sorry for me.  I don't feel sorry for myself.  I put all this on myself.  I'm treating this like a AA meeting for Yes-aholics :) 

My meltdown happened last Sunday.  I was trying to print Kate's picture off and the printer wouldn't work.  Isn't it funny how the simplest, silliest things that go wrong set you off?  You'd think I was attack by a Grizzly, not an HP, but hey, I lost my cool.

The following day I had Ronald McDonald House night.  I was excited for this.  It's my favorite volunteer activity.  We go to the house, usually with about 8 students, and cook for about 40 families.  We had a big family style cuisine planned- spaghetti two ways, pasta con broccoli, baked ziti, garlic bread and a Rich and Charlies salad.  I had about 8 bags of food ready in my classroom and about 15 minutes left to go before we left when a student came in to deliver the news that no one could go.  My jaw dropped and I panicked.  Now, I don't want to dwell on the student thing... I still to this day don't know what happened but for the sake of argument it was outside my control.  We've been volunteering at RMDH for several years now and this has never happened so I'm not blaming the kids... but I still was in a state of stress.  How can I cancel this late and have 40 families who spent their entire day at the hospital watching their sick children hooked to machines? 

I packed up all the food in my car.  It was raining and gloomy.  My first thought was that I'd drop off the food so they'd at least have something to cook.  My second thought was that was ridiculous.  I don't even want to cook after having a day of fun... right about then the rain stopped and the sun peeked through.  Call me loony but a giant rainbow shined down from the heavens.  Yes, I'm for real. :)  It was like God telling me that I have to do what I can.  My mood lifted and I thought "YES, I will cook the entire meal myself".  I can't do anything about someone else's choices.  I can only control my own and I chose to do the best I can with the time and resources that I've got.  And you know what?  I was like a trained chef.  I had two ovens going, meat cooking, mushrooms sautéing, pasta boiling and dishes washed all at once.  I'm telling you...sign me up for the Food Network because I rocked that kitchen (ok, I'm just kidding about that because if they actually called me you know I'd say yes!).  In an hour and a half I had a feast set out for the families.  I was so proud of myself.  Folks, I made lemons out of lemonade and it tasted delish :)

So after my week of torturing myself...I'm trying to say no more often.  I started at the girl scout neighborhood meeting.  They needed a Rockwood employee who could drive the biodeisel truck to haul all the camping goods around the state (not only do I fit that description, I'm in the same department as the biodeisel group).  I hung my head low and said no in my head... it was a start.  Saying nothing is like saying no, right?  They also asked for a person to run a club at the high school to promote student awareness for others with disabilities.  I'd love to do that!... but I didn't reply.  I mentally had to restrain my hands from typing a yes email and I still think about how fun that would be... but I didn't say yes. That's no, right?  Ok, so I'm working on it... it's a start.

The rest of my week is filled with more things I volunteered to do and I don't mind one bit.  I figure that life is short... why not... within reason.  right?  I hope your week is as fun and frantic as my own...Now, I'm off to plan my next activity.  Have a happy fall week my friends and I'll see you at the next meeting!

Gratitude

Today I entered an essay contest about my journey towards understanding williams syndrome.  My cousin, a writer, encouraged me to share my story and I'm glad she did.  It helped me reflect on my journey, so far, and it has made me feel so much gratitude towards a group of women who have helped me along the way.  This blog post, modified from my essay, is dedicated to them...

Every parent has dreams that their child will have a lucrative future- one with a successful career, families of little grandchildren at play, that they will always be healthy, happy and well adjusted. Then reality hits you. It hits you hard. You get a diagnosis that your child may never have those things. That they will most likely never drive, never marry, never have a career, never move out of your house, never have children, never be completely healthy and worry free. Let me tell you, that’s hard to hear.


Upon the diagnosis, I spent a lot of time contemplating this new reality and trying to make sense of it all. When Katie was first born, my mind was clouded with confusion, denial and anger. I saw a child hooked to machines, who didn’t smile, who wouldn’t nurse, who cried most of the time. I saw a broken child.

I soon sought after help and found myself in a support group on Facebook where I met other mothers who were in my shoes. They taught me that this new world is one of unparalleled beauty. They taught me to see the joy of having a child with special needs. They walked me through my lows and celebrated my daughter’s achievements with me. These women have taught me that all those dark, early emotions were only natural ways of handling the shock.

It took a group of strangers to show me that my daughter is all I had wished for and more. Today I know that my “broken” child is perfection. She may need a little help, such as glasses to see and braces on her feet so she can walk, but despite all of those obstacles, she takes life’s challenges in stride and with an eager zeal to succeed. Katie didn’t smile until six months old, but since the first grin, you can’t wipe one off her face. Her smile is the most infectious, mood lifting thing you’ll ever see. She is the sweetest little person in the world. If I come home unhappy and stressed, her giggle and a hug is all I need to feel whole again. She has taught me all about blessings and finding the beauty of love in unexpected places.

Without that community of women, I’m not sure I would have found the balance that I have today. Sharing my life with them has taught me about the value of a community. As I matured in thought, I was inspired to marry my “typical” life as an anatomy teacher and my “special” life as a mother by writing a blog named “Understanding Williams Syndrome”. I share the medical knowledge I have about Williams Syndrome with others so mothers, like me, can advocate for their children and understand what happens in their bodies. This latest project has helped me learn more about paying it forward. I now repay those women who have shared a powerful lesson of love with a powerful lesson of knowledge. My hope is that together we can make our family’s lives rich and fulfilling.

Through this journey, I have learned that life takes turns that you don’t anticipate but by putting trust in others, sometimes even complete strangers, and making the best out of your situation, you find yourself in a very powerful and unexpected place full of love. As an exhausted mother of a child with special needs, I still wish my daughter didn’t have these unique challenges. I still carry a little heartache over this reality. I still wish she didn’t have a more difficult life than most but, I wouldn’t exchange this reality for anything. I have learned that by understanding williams syndrome and sharing my experiences with others like me, life can be more rich and beautiful than ever before.

I'm not sure I'll even come in higher than last place on the essay contest, but I am sure that I have been blessed- with a beautiful daughter and remarkable support.  Although I haven't met these women face to face, I know that they care for me and my family and that I can rely on them for help.  That is just another one of the surprising blessings I have encountered on this journey through Williams Syndrome.

My Wish

Today Katie had an eye check up. On our way to the office there was a brigade of emergency vehicles keeping a frantic pace in our path. I should have known that when you pull into a doctor's office and there is a massive car fire that you should just turn around and reschedule. Yes, it's apparently hot outside and car fires are bad omens.

So, Katie needs glasses. Her eyes are falling out of alignment again and she's starting to favor her right eye. ugh. I, of course, was hoping for good news. I wished that she'd have perfect eye sight. I wish that all is good in the world and I don't need to worry. But here I am, worrying. I'm good at it.

My mind is full of positive thoughts. I know that it's not the end of the world. I know that she has trouble seeing sometimes. I know that things could be worse. I know that she'll look cute in glasses. I know that they will help her learn and develop. I know these things.

My heart doesn't feel them, though. I have a little case of the heartbreak. I just wish she didn't have to deal with all of this. I wish I didn't have to worry. I wish I felt like my head tells me too. I know that there are many others out there that have much greater tragedies. But I can't help how I feel.

I was holding it all together until I heard "My Wish" by Rascal Flatts on the radio...

"and if one door opens to another door closed,

I hope you keep on walkin' til you find the window.

If it's cold outside, show the world the warmth of your smile,

but more than anything, more than anything,

My wish for you is that life becomes all that you want it to.

Your dreams stay big, your worries stay small.

You never need to carry more than you can hold.

And while you're out there getting where you're gettin' to,

I hope you know that someone loves you and wants the same things too.

yeah, this is my wish"

That's when I realized, that my heart break wasn't because she needs glasses. My heartbreak is because today is just another reminder that I have to work hard to make her wishes come true. I have to be her advocate. I have to help her feel right in this world and I have to help her navigate through it all.

So, what it all boils down to is that I wish the best for her because I love her... that is where my mind and heart agree.

Tightrope

All summer I've felt like I'm walking a tight rope and navigating it is a guilt ridden process. I'm always feeling guilty about something. If I go out and have fun with the kids, I feel guilty that the house is a wreck. If I stay home and clean, I feel guilty that the kids are not getting much attention. If I want to paint a room and make it look nice and keep the kids occupied with a day of Nick, Jr. then I think as I paint of all the pediatrician warnings that tv will rot their brains. Grr.... the balancing act is quite a mind game.

Summer has taken on a very different meaning for me since having a child with special needs. Gone are the wide open days, where schedules were a thing of the past and when I could go weeks without knowing what day it really is. Now summers are about scheduling; about fitting in the fun around therapies, IEP meetings, doctor appointments, sporting practices and nap times. Lately it's felt never ending. Don't get me wrong; I'm grateful for the time to even schedule these things... let alone the time to play but being a stay at home mom is exhausting.

It's funny how people are such habitual creatures. Every summer I go through phases of thinking. I'm beginning to see a definite pattern in my "stay at home mom" time, aka summer vacation. I start out thinking how long the summer is and how I'll have plenty of time to check items off the to-do list. So we play. This is obviously my favorite time of summer :) This includes the portion of summer where we go on vacation.

When we return to a mound of laundry the height of Mt. Everest, I realize that the house is in shambles from all that play and it's time to get to work. That, coupled with around this time of summer everyone and their brother begins to ask teachers when they have to go back to work; like we really want to think about that! All it reminds me is that my summer is almost over and I haven't touched the to-do list. Then the schedule begins to pile up. Time to fit in all the doctor appointments, IFSP/IEP meetings for Kate, vet appointments and random other items on the to do list. After a couple weeks of that I feel so drained from running around with my head on backwards that I start having lazy days where I don't want to move off the couch. Then I start to get a view of the house and think, Lord, we have far too much stuff. So purging and painting begins. I clean out closets and rooms and make a giant donation/sale pile, paint a room, redecorate it and marvel in its clean, crisp airy feeling that I know will last a whole week, if I'm lucky! After about 3 weeks of all that work I realize that time is short and I won't get that time back that I used painting a wall that I could have used to take my kids to a museum or the zoo. Basically, I'm not so great at balancing on the tightrope. So, folks, I'm reentering the fun stage. I'm going to make the best of what summer has to offer. See you when school starts... and don't ask me what day that is, I'll have to recheck my schedule :)

A Hero

Our Donald

One year. It has been one year since we've lost our cousin Donald in the war in Afghanistan. It's really hard to believe. It's a funny thing, grief. It took several months not to tear up at the sight of a flag. My heart still swells with emotion every week when I say the pledge of allegiance at school. Not a day goes by that I don't think of him at some point. He is a hero.

Donald's Homecoming... a day I'll never forget

Donald has changed many of the ways I see things in life. I no longer look at a flag and see just a flag. I look at a flag and understand its meaning. Men and women have died for that flag. A person my family loves and values has died for that flag. I will never, ever take that for granted.

A flag flown by the fire department for Donald over the AB bridge

Another change is that the war is personal now. Before, I read about loss. Before I read about tragedy. Before I read about victories. Now I feel the loss. Now I feel the tragedy. Now I feel the victory. I've tried to make changes to my life in this past year to honor Donald's loss. I better understand the sacrifices that men and women face when deployed. I've sent countless care packages and even more letters abroad to send them the comforts of home. I've tried to encourage others to become involved and I've tried to teach my students the value of giving back to those who give all. I know it's not much, but my hope is that it makes a difference to someone.

Donald (far right) and his fellow Marines in Afghanistan

I encourage you to do the same. Send a package overseas. Write a letter to someone you don't know and thank them. Don't expect anything back. They are giving you more than you could ever possibly return. Just give them something. It's very easy. You can join an organization, like Soldier's Angels. You can donate to the USO or Fisher House. Or, like my choice, you can become "friends" with someone abroad at AnySoldier.

Donald has inspired many to care. All the charity that may result from his death will never amount to the wish our family has to have him back. We are proud of him. I'm proud to call him family. I'm proud to call him my hero.

Click here to view the tribute video I made for Donald after his death last year.

Summer Treasures

Digging for treasure

Our first week of summer is coming to a close and I am again reminded how precious my job is. Who else in the world gets to be a stay at home mom for two months out of the year and still have a full time job that they really love? Teaching is great :) This past week we have gone on many imaginary adventures...

We've been playing "treasure week" at home, building ships out of boxes and turning ordinary rocks into golden nuggets for the sand box.

For our second week of summer we're calling it bug week. What better way to kick off bug week than to see them first hand... an outing to the Butterfly house!

A pair of Paper Kite Butterflies... we spent a lot of time studying these.

Today was a scorcher of a day but we set out to Faust Park, anyway. I thought for sure it would be packed (like usual) but when we arrived, there was only one other family at the playground.

Katie at the playground

Ally has always been quite the cautious kid. She doesn't care for heights and is frightened by any tall slide. She has recently conjured up the nerve to go down the tall twisty slide (no tunnels, yet) and was dead set to show her new courage to me. Ally climbed the steps skipped across the platform and was stopped dead by the swinging bridge.

Navigating the scary bridge

But with much encouragement from myself and the other family visiting, she walked across the bridge. When she reached the slide it was too hot (oops, I probably should have checked that!) and then had to turn around and do the scary bridge again. Needless to say, our outing didn't start off on the right foot! After about 20 minutes up there we made our way to our favorite part of the park...

We headed into the butterfly house to cool down and look at some bugs. Ally was in her comfort zone here. For example, we were looking at a display of preserved butterflies and I pointed to a blue one and said "Look, it's your favorite the Blue Morpho!" She proceeded to correct me; I was looking at a blue hairstreak because the bottom of their wings are like a swallowtail's. My little miss smarty pants :) Makes her momma the science teacher proud!

Discovering

Once inside we looked for all the butterflies we knew. I particularly liked this one:

Anyone who knows me, knows I'm a sucker for trees. This butterfly is black and pink on the top of its wings but as soon as I got close with the camera, it camouflaged itself by closing its wings and fading in with the tree. Love that. :)






Speaking of trees, here's another one that caught my fancy:
A flower from the Chinese Lantern Tree

I like the botanical photos. Not only are they beautiful to look at, they're an easier subject to photograph... compared to a two year old who's learning to run and a 5 year old that's more interested in chasing down a painted lady.

I did manage to get the girls to sit for a picture on the butterfly bench. Although, Kate would rather look at her sister than me, I think that this picture captures the love she has for her big sister. Yes, they fight like crazy, but who with a sibling doesn't. They melt my heart when they love on each other :).

So that's our close to treasure week and kick off to bugs. Appropriately, Ally treasures bugs, especially butterflies, and I treasure these adventures with my girls.

Melmo

One of the most endearing things about my kids are the adorable words they say, or try to say for that matter. Lately Katie's vocabulary has been expanding like crazy and the little words she says are so stinkin' cute. Melmo (Elmo) is her favorite. She exclaims "Melmo!" every time she sees him on t.v., in a book or as a toy. She also says "Bapoo" when she needs a diaper change, lol.

Ally had her fair share of cute words when she was younger. She loves to hear stories of the funny things she used to say- like Dink. She used to ask for her pacifier or binkie by saying "Dink!" I remember the day when she said bink instead. Disappointment lingered in the air as I knew that cute stage would come to an end as she aged.

But at 5, she still says the cutest things. Her current craze is bugs. She wants to study and learn about them all the time. She loves butterflies but not the waps (wasps). The cicadas came out yesterday and she was fascinated. We walked up to a lilac bush and she found about 50 of them on there. Ally exclaimed "Mom, look! A spa-cada tree!!!" All day she talked of spacadas :) I guess that cute stage doesn't really end after all. :)

Countdown...

Countdown to summer... one more week until school is out and stress floats away like a balloon in the wind. I can't wait to be a stay-at-home mom again for two months. What a blessing.

Lately I've wanted nothing more than to just be home with my girls. Recently one of our little Williams syndrome babies lost his life and although I didn't know him, I feel a loss. I think about it often and I find myself just wanting to hold my children. It's scary because it's so close to home. I've been thinking back to all the feelings I had when Katie was in Children's hospital with congestive heart failure. It conjures up many memories.

Today, though, I can honestly say that Katie is so healthy, I don't find myself worrying too much about her. It's a relief to see her happy, medication free and growing. In the beginning, I wasn't confident that she'd have that sort of future. So, in the wake of a sad week for the WS family, I plan to count my blessings. I want this summer to be one of treasures.

We have plans of fun, educational exploration all summer. We will explore treasures in our city, with our friends and with family. We even have a big extended family vacation planned, a first for the Lohse's. Fun is looming... t minus 7 days!