Sayin' It Out Loud

I often step back and think of what it must be like for other people with me having MS. I know. Silly. As if I do not have enough on my plate, I often think about how MS impacts the people around me.

When I was a little girl, we belonged to a pool in town.  Every day in summer, we would go to the pool until what felt like evening.  It was a blast.  I still have great memories of full days of sunning and swimming. 

There was a family who belonged to the pool with a mom with MS.  I did not know what MS was - I was a young girl. I remember being sad as I watched this woman deteriorate into a wheel chair.  I remember hearing grown-ups say MS - not even knowing what they meant and having no idea that I would ever know MS.

Forward, almost 20 years later, and I was diagnosed with MS.  I have to admit my head went right to this woman.  I don't even know if I was fearful of becoming that woman, or fearful because I would never want anyone to be sad for me. As I type, I still do not know.

I do know that I have thought of her many, many times in the last 13 years. I remember when I first started doing daily shots, I used to say to myself "I will swim." After I had kids, I started saying, "I will swim with my kids" as the needle stuck.

I don't think she would be offended.  Even though she could not swim, she has offered me strength.  She showed up.  She was not afraid to go to the pool. She did not stay home.  At the time, there were not therapies to keep her swimming, running, or dancing. Maybe her course would have responded to the current therapies that I take.

Tonight, I finished a video I made for work. I made a video for the graduating eighth grade class. It took me HOURS.  A whole lot of hours.  I put the video on my TV to have a final viewing. I could not help but dance.  My kids and I danced. I did the "Limbacher-Jig" as my Kappa sisters would say. I even tried some of the new cool moves I am too old to know.

My daughter said "You are a good dancer!"
I said "Thanks!"
She then said "You are a good dancer for someone with MS" I half-laughed.  She is 6.

I thought I have more work to do. 

I have to teach her, through my actions, what MS does and does not mean.  That is does not mean you have to stop doing the "Limbacher-Jig"

That is does mean you should make more time to do the "Limbacher-Jig" because you can!

It means I should not set limits. It means I should talk more about MS with my kids. As open as I am, it means I need to share more. I need to calm the little fears, in all of us, that creep up. I need to show up.

As I sit here, my daughter pops in and says "Limbacher-Jig - that rocks!" At this moment, I am just a good dancer who can swim with her kids.  And that is enough.

Garden Party

This year, we are determined to have a garden.  When we lived in our old house we had raised garden beds filled with vegetables.  The peppers were HUGE and the tomatoes were fantastic. There is nothing like the feeling of making a tomato sandwich with a freshly picked tomato.

So, after being in this home three years, Michael decided to move forward and build a raised bed and start planting.  Michael along with his trusty helpers, Michael and Maddie, picked out a huge variety of vegetables. Some that I did not even know existed!

As you can see he positioned the garden in the back of the house in front the back wall that is not finished. Great sunny spot - and close enough to the house that we will not have deer munching on our salad!

I know it is just a garden, but in many ways it is another example of our family getting back to the basics.  We needed to get back to the basics. This year, we have been tested at times. Boy, have we been tested.  But the simple act of being together and watching Michael and the kids plant and care for the garden is rooting our family deeper than any tomato plant.

THE Kitchen

There are a few plus sides to Michael being out of work. Give me a few minutes and I will get one.  No, truthfully, all joking aside, this has been a good time in our lives.  It is nice to see him being him.  He is able to breathe again. And, between looking for a new job, he is building our kitchen. 

Not everyone builds their own kitchen. In fact, I cannot even count on one hand the number of people I know who have. My grandfather - my Dad's Dad. There. End of list.

In my mind, Michael building our kitchen is so obvious.  It feels like a "right of passage" in this home. It feels like we are honoring the families that came before us.  And, most importantly, he knows what he is doing - and we know what we want.

Let me be clear..this is NOT something I would recommend.  I would not tell my friends this is a great idea.  I would not be shouting "go for it" to anyone. Too long, too stressful, too many decisions.  There are much easier ways to get the job done.

So here it is SO FAR!  Not done, but getting done. 

The cornerstone, I think, is our vintage Munson Slate sink (see previous post).  We saw this sink at an antique/renovation home store years ago.  We called the next day to see if we could get it and it was gone. Gone in the way you want it so bad and cannot believe you did not even have the chance to want it so bad.

The seed had been planted. Michael scoured the internet and found one in New Hampshire at a romantic antique joint "City Girl in the Country." So Michael loaded Maddie in the car and they set off to get the sink. Hours later, the sink had arrived home and we knew it would be the foundation for our space. 

Our inspiration for the space comes from a renovation magazine I have looked at so many times I can practically guess what is in their cupboards. We are building an antique red kitchen - and I am in so deep that there is no turning back.  It may not be the choice for everyone, but it makes sense in this space. Real good sense.

We have recruited "cheap labor" as my Dad calls himself.  Grape soda is all it takes to draw him in.  He used to ask me if we were going to "flip" this house.  I say, we are way past the flip stage - that is for tv shows on HGTV. I actually think my Dad likes helping as much as we like having him help.  And if he doesn't, he does a darn good job of acting like he does. 

The funny thing is at every stage it feels like it has always been like this.  When another thing gets finished there are no fireworks shooting off, no fanfare.  The upper cabinets look great flanking the sink, and the oven has already baked a mean flour-less chocolate cake. The transitions that could have felt awkward seamlessly change.  It is a lesson far beyond the kitchen.  Life moves, things change, make it seamless, don't get caught up in it, breathe.

Our antique hoosier cabinet we bought last year from an estate sale sits in the front part of the kitchen

Walk away from the CRAZY

OK, this has nothing to do with this post

but here is a sneak peek at our sink

There is a lot more built - next post

KITCHEN UPDATE!!

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It has been a long week. Between work, kids, home, and sports it has been a lot to keep straight. Then throw in a visit from a favorite MS friend, optic neuritis. It makes the challenging more challenging. It makes me have to choose. Time to choose between the events and priorities that I can't miss or I will be sad and those that I need to miss and will be sad. The choices are not easy.

It is difficult to explain optic neuritis. My eye hurts - 24/7 - when I wake up it hurts, when I go to bed it hurts, and in between it hurts.  It hurts when I move it and it hurts when I don't. The vision is off. When isolated the colors are markedly different.  It is almost like there is a grey screen over the eye and I get a blurry half glimpse of the true technicolor. But eyes are funny.  They compensate for one another. So when both are working the differences and losses are not as obvious. I think that is true of many things.  We compensate. I do more because I can. And I pray that they day does not come when I can't.

The kicker to make it better is that I have to go on a lot of steroids. Not the easiest. They make it difficult to sleep - a lot of late night tivo watching! They make it easy to cry - a good amount of teary moments. And they make it easy to get annoyed - a fine amount of cut it out you are bugging me moments! But they make it better. So I take the bad with the good.

I missed a fun, crazy reunion with my Kappa sisters this weekend. Thirteen years after graduation, these events are even more special as we not only remember the past but catch up on the present. I will have to wait until next time. I saw my son hit a double in baseball and my daughter run on the soccer field. Those things can't wait until next time.

I received a call this week from a woman whose child goes to my daughter's school.  She asked if she upset me because I was not my "usual friendly" the last time I saw her. If truth be told - I cannot actually remember who she is.  I have to be at events with hundreds of parents and kids as chair of our PSO. Believe it or not, I don't remember everyone.  99% yes. 1% no. She is in the 1% no category. She may not have made an impact in person, but her call certainly did. She was right. I am usually very friendly. I also know that I am very thankful and appreciative and very hands-on. I was taken back. About the same time as her call, the planets aligned and my steroids kicked in. Yes, she made me cry. I cried because I know I was not unfriendly to anyone - even the gal I cannot remember. Maybe she did not know all that I have been going through. Maybe she did not even care to know.

I have run her call in my head over and over. I have decided to walk away from the crazy. Her crazy reminded me that we cannot judge someone without walking in their shoes. We cannot put expectations on other people - A lesson I sometimes have to be reminded of.  And we cannot put expectations on our self.

I am not usually good at walking away. In fact, I don't remember a time that I have walked away. This time I must to be true to myself.

Snack Closet

Maybe our home has been under renovation so long that the not-so-normal is oh-so normal. Michael caught this moment when Michael and Maddie were out on the deck having a popsicle. It is not every house that staging is a place to hang out!

And speaking of moments, I have mentioned that we have had a kitchenette in part of our home while the main kitchen is under construction. Our kitchenette is a small room with our washer and dryer, refrigerator, double sink, cabinets, counters, microwave and a variety of important appliances - a foreman grill, skillet, griddle, and toaster oven.  The appliances that Amercian's can't live without.  I often think, while I am doing the dishes by hand, that this would be a luxury-size space if I had an apartment in NYC.  That is the dream - and I am sticking to it!

So Michael's friend comes over to play last week. It is a rainy day and the two boys are having a mad Mario wii tournament.  They are munching on bag snacks - the ultimate kiddy treat! His adorable friends says to me..."Can I have another bag of Doritos from the snack closet?" I burst out laughing! Seriously, a snack closet! How funny to think that this little guy will go home and say - you will not believe they have a snack closet! All this time I have been thinking this kitchenette would be a hit in NYC - and it took a 9 year old to bring me to reality - I have been feeding my family out of a closet!

Thank god the real kitchen in going to be bigger than the closet! Worth the wait.....

Dear Maddie,

I wrote my daughter a note today. I could have been writing it to myself. Today was her first day of soccer.  For all of the bravado this little gal has - she sometimes has a hard time. Kinda like me. 

It started out this morning.  She was crying and scared to start soccer.  We did not force her to play. In fact, she asked us to play. Many of her friends play. We sat out the Fall session and opted for a Spring start.  The disadvantage is that she is joining an existing team.  We picked up her uniform this morning when Michael was playing.  She came home and excitedly got herself dressed.  I thought it was going to be fine. It started out fine.

She started the practice drills - she got a ball in the face. It went downhill.  Like crazy glue that will not peel off your fingers, Maddie clung to me with tears streaming down her face. 

Her coaches were fantastic. Her brother was so super supportive. Her entourage of fans - my mom, dad, Michael, Michael and I all tried to work magic and calm her down.

It would have been easy to leave. I felt it was not ok to leave. I told Maddie she did not have to play. She did not have to have fun. But she did have to support her team.  As long as she was here - with her red shirt on - she was to support her team. She could stay on the side lines - but she needed to be there for the team.  I told her we would come back each week so she could support her team - and when she was ready...if she was ready..she could join the game. 

It broke my heart.  I could have been telling myself - you do not need to go to the overnight gymnastics camp, you do not need to go to the 4H weekend, you do not need to go to the 8th grade dance with Mark what's his name - but you might, just might, miss out on some fun. I could be telling myself - if you think this is scary get ready because soccer is the least of your worries. So kick now with all of your strength - to show you have it in you for the real challenges.

Try as they might - she did not want to go in the game.  But right towards the end - the coach's daughter Maddie came up to my Maddie. She said "Hi Mini Maddie, it's ok."  This adorable 3rd grade girl made my Maddie smile. The coach allowed his Maddie to take my Maddie on the field. They held hands and ran together and kicked the ball. My daughter - though she could not realize it - had a glimpse of her future Maddie-self being strong.  This 3rd grade Maddie showed me a strength I did not have at that age. I am thankful for her today.  She finished the game and the coaches had her lead the line of handshakes. 

I came home and wrote me gal a note.  I put it on her bed where she would find it. It may seem beyond her years - but she is beyond her years.  She carries a lot in her heart - like me - and I know that it is a lot sometimes.  She read the note all by herself - and she thanked me. Not once, but many times.  I did not do it for thanks - I did it because I know how she feels. I know how scary it is to be brave and fearful all at the same time.


My dear Maddie,


I am proud of you for trying today. Sometimes things are scary - but real courage comes from trying and getting in the game. All my love, Mom xoxo

Happy Easter - almost

Easter Egg Roll - 2010

The minute Maddie sees the Bunny she pops her shades on like she is on the red carpet.

Happy Easter! Big news on the cake front..This Takes the Cake has been taken over by The Cake Spot.  As you know, I am a cake person...we are a cake family. My mom found out about the new cake place when she was driving by.  She decided to order a cake for us as part of our Easter celebration.  She tried to make it a surprise but decided to tell.  She loves surprises - but also thrills in telling the surprise - so it is sometimes a half surprise. Sometimes I am not sure if I am still supposed to act surprised. It is as much fun watching her joy as it is having my own.

My mom went to pick up the cake before Easter.  My phone rang.  She called to tell me about the cake.  I am not sure if she was adhering to Oprah's no phone zone pledge or if the cake was just so shocking to her that she decided to pull over and call.  I am going with the cake was too shocking.

I know.  Cake is cake - right? Not really.  I do not want to trivialize this but cake means different things to different people.  My mom gets flashed back to her New Bedford days. Of her dog Saxie sneaking the surprise cake under the dining room table. Of birthday celebrations, creme horns, and memories of her old whaling home on Pope Street. Of birthday celebrations and family. Of cousins and laughter.

None of those celebrations had kelly green frosting (yes, her words!) and orange and yellow frosting writing a wild version of Happy Easter! None of those cakes had roses in florescent.  None of those cakes looked like a Mexican Pinata.

Tomorrow we will eat the "new" cake.  We might miss our old cake. We might in our hearts, by reminded of other celebrations that we have enjoyed cake together.  And deep inside, we just might feel sad that you can never go back...and we may realize it is much more than cake.

Happy Easter!