9.20.2013

Feeling the Love

Alessandro and I cannot explain how lucky we feel to have so many friends and family members support us every year during Walk MS. 

I am lately feeling especially grateful as we are at a point where we are struggling a bit with the ineffectiveness of his past treatments and the frustrations that come along with that.  We are hoping now more than ever for a new treatment that will work for him.  The importance of our fundraising efforts during Walk MS each year was seriously reinforced for me the other day. 

We attended a small "Thank You" reception put on by the Michigan Chapter of the National Multiple Sclerosis Society for top fundraisers and supporters.  Leading neurologist Paula Dore-Duffy was on hand to tell the group exactly what happens to the funds we all raise.  Dr. Dore-Duffy received a grant through the National Multiple Sclerosis Society (NMSS) to conduct a study on a strand of stem cells that she has identified and isolated in her laboratory.  The stem cells she identified are called human fat pluripotent pericytes. She proposes that human fat pericytes have clinical potential for use in cell replacement therapies to treat people with MS. These pericytes could help regenerate some of the damaged myelin, potentially reducing symptoms.  The cool thing about pericytes is that they can be produced quickly and ethically (for example, from fat cells left over from liposuction) unlike other stem cells you may have heard about. 

She is able to conduct further studies on this unique stem cell only because of the grant she received from the NMSS. She informed us that federal government grant funding for drug treatment studies is very limited right now, and that without funding through the NMSS and other organizations like it, so many research projects would go unfunded.  The money we all raise each year during Walk MS directly supports Dr. Dore-Duffy's research and other research projects like hers.  And you never know which research project will be the key.  

Alessandro asked her how soon she thought this therapy could be put into the works if it turned out it had potential to be successful and she said quite soon.  Here's to hoping. 

But more importantly, here's to action.  Team Alessandro has raised $12,427 dollars this year!  In the past 4 years, we have raised nearly $45,000.  The fundraising numbers always meant new hope and new treatment to me, but they took on a new meaning this year.  Alessandro has been having so much difficulty this summer, and he is switching to yet another new treatment.  Don't even get me started on how the insurance won't cover one of the treatments his doctor wanted to try.  I think this is as good of a place as any to be honest about what it means to live with a serious disease, so I may be posting something soon about the difficulties we've been having lately.  (Sorry, it can't always be food and games around here).  

Anyway, I came here to write about Team Alessandro's efforts this year, to thank each and every one of you who has helped throughout the years, and to ask you to help Team Alessandro reach its goal of raising $13,000 this year. We are so close.  Fundraising for this year's Walk MS ends on September 30th, and you can make a donation online by clicking on my personal fundraising page here.  $5, $20, $50...anything you can give would be much appreciated.  If you have already donated this year or in years past, we thank you so much and feel so lucky to have your support.  

This year's Walk MS took place on May 5, 2013 in Detroit.  I hope you enjoy these special pictures of our friends and families, and especially of our precious nieces and nephews.  


















And finally, this year's team pic!


9.16.2013

Contemplating Meatballs



Alessandro and I were sitting eating leftover spaghetti for lunch today.  It's his mom's famous recipe.  I served him 4 meatballs knowing how much he loves them. 

At one point during lunch, he started talking about how Dexter has "just gotten so stupid."  He thinks it's the acting.  He's just not impressed.  

I sort of snapped at him.  "Why do you care so much about Dexter?  Why are you letting it bother you so much?" [This was about the fifth time he has complained about the quality of Dexter in the last month, and I just couldn't understand why a television show should get under his skin enough to warrant so much of his attention].

Changing the subject, he said, "I'm glad I went for that 4th meatball."

"Huh?" I said. 

"I've been debating whether or not to eat that 4th meatball and I finally decided to do it and I'm glad I did."

"How exactly did that debate go for you in your head?"   

"Well, I was thinking:  Wow, I really enjoyed those 3 meatballs.  They were really good.  I bet that 4th meatball is just as good.  But, I don't know if I want to have 4 meatballs sitting in my stomach.  I'm not sure if I'm gonna suffer any type of blow-back from eating that 4th meatball or not.  I'm not sure if it's gonna be worth it."  

"Seriously?"

"Yeah.  I did a cost-benefit analysis and decided to go for it.  I'm glad I did.  It was good."  

"I think you may need to stop analyzing things so much. You want to eat a 4th meatball, eat a 4th meatball. You watch a television show you don't like, stop watching the show.  Don't let it bother you."  

"Yeah, maybe," he said.  "I'll think about it."  


Looks like I've got a contemplative one on my hands. 

9.07.2013

Our Saturday Mornings: Eastern Market


For us, Saturday mornings mean Eastern Market.  It's where we spend a couple of hours each Saturday morning, Spring through Fall, and some Saturdays in the Winter when we're feeling brave. 

I've talked to many people lately who say they want to come down to Eastern Market on a Saturday, but for whatever reason they just don't ever make it.  They have to work, or they have errands, or life gets in the way.  The market draws nearly 40,000 people each week.  If you've been wanting to get to the market lately, get here to see what all the fuss is about!  

For now, I'd like to share with you what our Saturday trips look like if you're interested.  

* * * 

I like to start any trip to Eastern Market with a coffee from Germack followed by an almond croissant from Patissiere by Matt Knio



 




One day, my sweet little niece Ava was even waiting at Germack for me!




She likes the coffee too!  

While we snack on our croissants, we usually wander over to Eastern Market Antiques and think about all of the stuff we're going to buy for our future home. 


And the things we aren't going to buy.


Then we go wandering in the Sheds, usually with a handful of items in mind that we want for the week. 

Sometimes, we treat ourselves to the best smoked salmon in town made by MaCohen's


These fine folks are so nice!  And the prices are right.  You can get a filet that will provide 3 meals for only around $10.  Smoked salmon makes for a very easy, fast, weeknight dinner.  Just shred the salmon, toss it into pasta, add thawed frozen peas and a bit of heavy cream if you're into that sort of thing, and bam. Tasty, fulfilling dinner.  We also like to add this smoked salmon to scrambled eggs in the morning. Yum. 

Some of our other favorite vendors and treats come from Slow Jams (fresh, all natural jam made in small homemade batches), Perkins Pickles (delicious pickles and Chow Chow, which is pickled red cabbage, garlic, carrots, green tomatoes and spices), Corridor Sausage (all-natural sausage made in exciting flavor combinations, such as garlic and juniper, apple and sage, and lamb and fig), and Love's Custard Pies (get the chess pie.  Just do it.)  



There's also a vendor that sells all houseplants for $1.50!  And they're so beautiful. 


I bought a tiny little plant from here a year or so ago (check it out here on our kitchen table last year) and it has grown into this beast, which is about 3 feet tall. 


Every plant we have in our house is from that same vendor.  Some of them are featured here in last year's apartment tour and here in my terrarium project

Aside from food, plants and antiques, we also often enjoy the best fresh lemonade you'll ever have, along with karaoke

There's no shortage of things to do at Eastern Market and Al and I never get sick of going.  In fact, on our way home today I said, "I always have so much fun with you at the market!"  And I bet you and your family would too!

Just in case you plan to come soon, here are a few tips:


  • In order to beat the rush, get their either before 9:30 a.m. or after 1 p.m.  
  • Bring a backpack and handled bags.  The pack makes it easier to carry all of your goods and the handled bags can be used for fragile stuff, such as plants and peaches. 
  • If you get an iced coffee from Germack, try one of their many flavored simple syrups.  Today I had ginger honey and, according to Alessandro, it made my coffee "interesting." 
  • Bring cash! There's an ATM in the Welcome Center, but it doesn't always work. 
  • There's more to Eastern Market than the sheds.  Make a day out of your trip and visit surrounding stores, such as Detroit Mercantile, Signal Return PressRocky's, Milano Bakery and DeVries.
  • And lastly, always take the time to take a selfie with your boo.   








7.04.2013

Happy Fourth of July, From the D!































*Pics of Ford Fireworks taken on 6/24/13 from the comfort of our living room*

6.20.2013

Independence

Alessandro recently got a scooter.  


We have had it for only a few weeks, but it has already changed both of our lives dramatically.

The words really should come from Alessandro's mouth about how it has helped, so I won't even attempt to do it justice here.  But I did want to note a couple of important events, moments and milestones we have already experienced.

On June 2, 2013, four days after Alessandro got his scooter, he exercised his new-gained independence in a big way.  It was a Saturday morning and I was out of town for work.  It was a nice day and he decided that he wanted to go to Eastern Market.  So he went on his own.  Just him!

He got on his scooter and off he rode to EM.  It took him only 6 minutes to get there on his scooter, which is about how long it takes to walk there from our place. Sure, he had a few hiccups along the way, like dropping his wallet on the way there, discovering it only at the moment that he went to pay for something, riding back over his tracks to find it, running into a couple who told him that they found his wallet and looked at his license to find his address and walked to our apartment to turn his wallet in!, returning to the apartment to get his wallet and then heading back up there.  Whew.  But he was on a mission.  And his mission?  To get me flowers.

*      *      *

That same night, we walked to St. Andrew's for a concert, which is about a 15 minute walk from our place.  The walk there and back was so special and is a moment I will cherish and remember for a long time.  Previously, whenever we walked somewhere of distance, I would push him in a wheelchair, only get to look at the top of his head, and would be sweaty and tired by the time we arrived at our destination.  He couldn't see me at all, and would have to turn his head around if he wanted me to hear what he was saying.  Eye contact, exchanged glances, smiles and expressions tend to get lost in those circumstances.  But not that night.  Al was on his scooter, I got to walk comfortably beside him, he had control over his movements, and we got to look at each other while we walked and talked. What a novel concept!  It was a freedom neither one of us had felt in a long time and it was pretty cool.

June 2, 2013 - Leaving the Devendra concert at St. Andrew's


A few days later, Alessandro got a little more ambitious and decided to go to an afternoon Tiger's game by himself.  I was in court for a speeding ticket that day (dang!) so I couldn't go with him, but I met up with him at the game when I got out of court, which was just in time to catch an inning and a half of baseball.  I got to walk home with him, which is quickly becoming one of my favorite things to do. It's the little things, people. 

June 6, 2013 - Al's First Solo Tiger's Game

I don't really know many perfectly mobile people who would go to a Tiger's game by themselves.  Alessandro, on the other hand, didn't think twice.   He's nothing if not impressive.  

6.17.2013

Just Because: A Lesson from Ava

Anyone who has children, nieces or nephews, or other kids in their lives, knows how these little ones manage to instill invaluable lessons upon us when we least expect it.  Lessons about unconditional love, finding joy in the simple things, endless curiosity and beyond.  The other day, Ava shared a lesson of simple kindness through a wonderful, inclusive gesture.  

I walked into my sister's house and was greeted by Ava who was doing a project by herself in the living room.  She had stacks of white paper and markers on the table and said she was making something for school.  She asked me if I would help her draw some pictures, but I assumed it was a homework assignment so I told her I didn't think I should. "That would be cheating right?"  My sister overheard me and said, "That's not a homework assignment.  She's just doing that on her own."  When I looked closer at her project, I saw that she was making greeting cards.  A lot of cards.  For every one of her classmates.  "22!" she said proudly.  



I asked her why and she said, "Just because."  It melted my heart.  I gave her a big hug and a kiss and told her how nice she was. And when I started to look at her work, I could hardly handle the cuteness. 


She made a list of all of her classmates, separated by "Grils" and "Boys" and crossed them off as she completed them.  


She drew fancy pictures of flowers, animals, cars, rainbows and beyond.



And on the inside she wrote a personal message.  She wished that each of her classmates had a spectacular, awesome, super or great weekend.  Simple as that. On one of the last cards that she made, she used the adjective "hopeful."  



She even made one for her teacher.



She eventually enlisted Maya's help and quickly discovered that Maya was good at drawing "ninja scenes," so she asked Maya to do a few cards for the boys.  I also helped with a picture or two and went through her list with her to make sure she got everyone.  That picture Ava is drawing on the left in the pic below was meant to be an octopus, but as you see it didn't really work out.  So she wrote "Octopus" above it just so that there was no misunderstanding.  


I loved that she decided to use her free time that day to make cards for all of her classmates.  Not just for the girls, or her best friends, or the person she sits next to, but all of them.  It reminded me that you don't need any reason in particular to do something kind and generous.  

Sometimes, thinking like a child isn't a bad thing. 


P.S.  More Maya and Ava.