22k(ilograms) for 22q...FINAL WEIGH IN!!!!

It's time!!!

Today is the final weigh in for the first 22k(ilograms) for 22q challenge.  How'd you all do?  My sincere desire is that it was so much more than just a numbers thing for you, were you able to learn something about yourself in the last month?  Did you find the benefit of setting aside time for yourself, no matter what chaos life threw at you?  Did you face an obstacle--be it a chocolate cake or a sleepless night--and find a way to overcome it?  Did you find a way to focus on a healthier lifestyle, and maybe find ways to sneak in some 22q awareness?

This was my first month back as a single mom after my husband headed back overseas again.  The boys are in school.  There's been a lot of change this month.  I also struggled through some life decisions of my own, my husband returns to America (for good) the end of January, and unfortunately returns to no job.  What are we going to do?  Who is going to work?  What will our income be?  I evaluated several options and decided that I want to go back to work.  So I've spent the past couple weeks searching and applying for some jobs.

I've never been unemployed before this year, and I've never faced rejection in the job market.  Anytime I wanted to change jobs, the job I wanted was available to me.  I thought I had found a great job, a job that was a good match for what I WANT to do, not just what will pay the bills.  But I got a rejection email today.  I won't lie, that didn't feel good!  Not all is lost, I have plenty of other applications in, other opportunities to apply to, and I'm certain that the right path will become available for us.  Somehow.

But here's the difference...I didn't medicate my disappointment with food!  That's always been my go-to.  Stress, failure, disappointments, they can all be dealt with through food.  I've always been an athlete, so it didn't matter that food was my vice, I stayed healthy anyway.  But now that I'm well into my 30s, I'm finding that my metabolism doesn't work that way anymore.  Neither do my joints!  I can't work out at the level I used to, which means I really can't eat the way I want to.

SO...  Drum roll please...

My final weigh in is X-7!  (3.175 kilograms)

I'm pretty happy with that!  Just like the title of this blog, I know that this is a marathon, not a sprint.  I know that healthy living is not about crash dieting, depriving myself, or running myself into the ground.  It's about making better choices the majority of the time.  Being active more often than not, even if it's just a walk.  Or maybe some planks at the bus stop while waiting for kids to get home!

So...report in!  Tell me not just what your weight is now, but what you've learned this month!  Give me some examples of challenges you've faced.  I'll begin to tally everyone up tomorrow and post the total :)

Challenges, successes, and...sleep?

I knew last week would be a challenging week, and it certainly was!

Physically

Emotionally

Spiritually

I feel like I got a good wallop!  Not many people have seen this picture, but you're all my friends, right?  There is the small fact that this is a public blog, but oh well, what do I have to hide?!  LOL!  This is a picture of me at about 6am Sunday morning after a string of long difficult days!

See!!??  I'm just as normal as the rest of you :)  I can look normal...sometimes...but often it's just an act! So when you meet me in person, I will probably look more like this:

This is me (in the black and blue, second from the left!) with some other 22q moms during a pre-conference social the night before the 22q conference at Nationwide Children's Hospital kicked off.  This was one of the long nights of the past week, this particular night I didn't get home until 11pm, yet I had to leave the house a little after 6am the next day to get to the conference!

The conference was a wonderful opportunity to get the latest research on 22q, but since I attended the Cincinnati conference just last month, I had heard much of the information already.  Thank goodness I had, because it had been such an exhausting week!

Earlier in the week consisted of some difficult overnight babysitting for a friend's medically complicated son, a very long and emotionally taxing Neurology appointment for Connor, a school picnic for Ian, a newspaper interview and photo session, some volunteer time with A Kid Again (a local group for children with life threatening illnesses), gymnastics for Connor, and then--just for fun--Gavin started throwing up on Thursday.  Ack!!  Then the conference social Friday, the conference itself on Saturday, and then Sunday.  Oh Sunday...usually my day of rest, but not this week!!  Sunday we spent the entire day at Kings Island, an amusement park near us that was hosting a fundraising event for A Kid Again.

Here are my 3 boys and Connor's best friend at the fundraising event this weekend!

So, how did I do with all of that and my weight loss journey?  I did okay.  Not great, but okay.  I have been gaining and losing the same 2lbs for the past 10 days, it's been very frustrating to see the scale go down then back up then back down again.

I'm ending this week at X-6lbs.

Considering this is week 3, that's not bad!  But considering I was as low as X-7.2, I won't lie, I'm frustrated!  But at the same time, I know that I can't expect weight to just drop off without me having to work for it.  Overall I'm doing better with diet than I was previously (especially this summer!) but I'm not getting as many workouts in as I'd like to.  I also have been tracking my sleep and realizing that it's way too variable.  The best way to get a body to adjust to a new metabolism to encourage weight loss is to get stabilize everything possible.  That means as close as possible to the same number of calories, the same nutrients, the same calories burned, and the same hours slept.  Yeah...that's not happening!

So my plan this week is to do my best to get myself onto a better sleep schedule while continuing my focus on healthy eating and getting in a workout whenever I can.  I'm trying to remind myself that a workout doesn't have to be running 3 miles, it can be crunches in bed right after my alarm goes off, arm circles while cooking dinner, lunges while putting away laundry.

How are the rest of you doing?  Is anyone else experiencing the same up and down fluctuations I am?  Does anyone have any thoughts on how to counter this?  I'm looking forward to hearing from the rest of you!  Report in everyone!!!

Slipping is not falling and does not mean give up!

When I reported in on Monday night, I mentioned that I was at X-5, but had been at X-7 until a weekend where I was a little less careful.

Well, I'm happy to say that as of today (Wednesday, actually it's after midnight, so it's Thursday now!) I'm officially at X-7.2!

BAM.

Take THAT!

So yeah, I had a little slip, 2 steps forward 1 step back, but I didn't get discouraged, I set my focus again, and kept chugging along.

And, I have a mini-success to share!  Connor had a long appointment at Cincinnati Children's yesterday, and for many reasons it was a bit more of a stressful trip than usual.  Yet when I left my house at 6am, I left with a Shakeology in hand, not an over-priced calorie-ridden store-bought coffee.  When I ate lunch in the cafeteria, I enjoyed a Ceasar salad (with some ranch dressing, but not even half the packet it came with!), I didn't stop for food on the drive home even!  THEN at a picnic later that night, I had a single glazed pumpkin donut hole after eating a meal of the healthiest food choices I could find (considering it was a putluck style picnic!)  I had a treat, but I kept it small and avoided the temptation of all other treats.

And now I'm being rewarded with X-7.2!!

We'll see what happens the rest of the week until Monday's weigh-in.  I'm still struggling with some girly issues, so I'm expecting to see a bit of weight fluctuation for a few days, but that's normal for me.  I have a big dinner social Friday night that I need to try to be good at, but I have faith that I can do it!  Lunch is being provided for me Saturday (at a conference) and Sunday (at a fundraising event) so I'm going to do my best to plan ahead and stash some healthy snacks in my purse to help me avoid the temptation of any bad food.  A little pre-planning goes a long way!

Now to end this post with a cute picture of Connor, because...why not?!  He loves to color and is quite good at it!

Week 2, are you still hanging in there?

I've heard that it takes 2-6 weeks for something new to become a habit.  This is crunch time people, these next weeks are the times that will decide if you are in this for real!  Are you dedicated?  Are you ready to make some serious changes?

My name is Samantha and my week 2 weight is X-5!

WOOHOO!

That's great, but unfortunately I was as low as X-7 until I fell to temptation of some good food this weekend and wasn't able to go on any runs (although I did walk several miles)

This is the boys at Charleston Falls, a park near us with trails through the woods.  We walked at least 2 miles, and a lot of it was up and down steps and rocks.  

Also this tends to be my heavier time of the month on any given month, lovely how all this female stuff works, isn't it?!

But, I am going to try my best to lose those 2lbs and more this week!

I did get 2 runs in this week, and I downloaded a cool new app on my phone that tracks my run as I go.  It counts off the miles for me while I'm running, then sends a run overview to my Facebook page for me!  It's been fun to play with it, but it drains my battery really fast.

This is me all flushed and sweaty at the end of a 2.6 mile run this week!  

This is going to be a difficult week, I'm going to have to get creative with exercise.  Today I started babysitting a friend's 2 year old who is very medically complex.  I was able to sneak away from a shower, and he napped through an interview and photo shoot I did for our local newspaper, but otherwise I wasn't able to go on a run or walk.  Tomorrow (Tuesday) Connor has a big appointment with his new Neurologist at Cincinnati Children's.  I have to take my friend's 2 year old with us, and we have to leave at 6am, so it'll be a busy morning!  Then in the evening there's a picnic for my oldest son's gifted school.  *IF* my friend picks up her son in the afternoon, then I can hopefully squeeze in a workout at my church before the picnic.  Then Wednesday my day should be more free until evening when we have speech therapy then Awana at church, there shouldn't be any problem with me getting a run in in the morning I hope.  Thursday is the same, I'm busy that night (babysitting again, different family this time!) but the morning should be free.  Friday the boys are off school and we're heading to Columbus for a 22q conference, so probably no running that day.  Saturday is the conference, so no run, but Sunday we're going to King's Island, a local amusement park, for a fundraising event so I should get in plenty of walking all day.

Whew!!!!  And I thought I was busy when I was a working mom!  Somehow I'm just as busy as a stay at home mom!

How are the rest of you doing?  Keep encouraging each other, you can do this!  Are you starting to feel better at all?  Noticing any changes?  I'm already seeing some clothes fitting just a bit easier now, which is a welcome change!!

Week 1 results!!!!

It's Monday, which means the end of week 1.  Time to report in!!

My name is Samantha, and my weight is X-2.2lbs  :)

Congratulations to Becky (X-2.4), Dan (X-5), and Fiona (X-2).

That means, just the four of us who have checked in as of now, have already lost 11.6lbs, or 5.26 kilograms towards our goal of 22 kilograms!  And it's only week one with only 4 people responding!!!

You guys blow me away :)

But more importantly, I hope that you are blowing yourselves away!   You should feel really proud for this initial accomplishment!  We all are facing a lot of personal challenges, but somehow each of you found a way to focus on YOURSELF this last week.  I'm really proud of you all :)

So, let's focus on this next week now!  Does anyone have any plans for exercising or eating better?  Is anybody trying any specific program, or are you just winging it?  I'd love to see some more of you sharing your daily activities *and* challenges with me!  Let me cheer you on, let me be your shoulder to cry on too.

Here's to week 2!!

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5k for 22q!

Happy to say I can report that I have achieved 5k for 22q!

A 5 kilometer race AND 1.3 kilogram weight loss!  1.3 kilograms down, 20.7 kilograms to our goal of 22k(ilograms) for 22q!  I've had several people ask me about the shirts I wear when I run, I'm getting the word out there, one run at a time.

I've been having some shin splint problems and Achilles pain, unfortunately this is pretty typical for me.  I've been doing a lot of icing and wearing a splint at night trying to help it.  I also took several days of rest this week, focusing instead on my diet since I couldn't run.

But not today!  Today I ran a race!  Just a 5k, nothing big or long, and I didn't try for any specific time. I ran with my oldest son, Ian (age 8) for part of the race, and both of us had a lot of fun!

How's everybody else doing?  Anybody take up some new exercise?  Anybody working on changing their diets any?  I've been drinking Shakeology every day to ensure I'm getting the right nutrients.  In addition I've been eating some rather tasty salads, made with lots of baby greens, sometimes topped with chicken sometimes with sauteed mushrooms and onions.  I've also been working on adding more water into my day, I realized I had let myself turn into a camel!  But now I'm drinking at least 40oz of plain water, which is still under what I need to be drinking, but it's definite progress.

Along with drinking, I'm sad to report that McDonald's ended their summer-long any size iced coffee for a dollar special.  But, I'm also happy to report that McDonald's ended their summer-long any size iced coffee for a dollar special!!  Huh?  That's right, I'm sad, but I'm happy.  I thoroughly enjoyed drinking them all summer, but my waist line is showing it!  Do any of you have a food or drink that you just love, even if you know if's horrible for you?

Monday is when the first reports are due from everyone!  I'll post then and you can all add your results to the comments.  But please tell me about your progress!

My name is Samantha, and my starting weight is X

I'm so happy!  I had no idea if anyone would think my 22k(ilograms) for 22q was a good idea or not, I had no idea if I'd get anyone to join me, but today it officially kicks off and I have 12!!  That means only about 4lbs each to meet our goal!!

Now, since today is the day it starts, our next "weigh in" isn't until *NEXT* Monday.  That means we still have all week to recruit more people!  Is it possible to double our numbers you think?

So here's what I'm envisioning.  This isn't just about us getting healthy (although that's the main objective!) this is about us getting healthy WHILE spreading word about 22q!  So post about this on your Facebook pages!  Tell friends what you're doing!  Maybe each week when you share your progress, include a fact about 22q.  If you are working out, wear *something* that says 22q on it (your zoo shirt, a Dempster Foundation shirt, even a plain white t-shirt that you took a black marker to and wrote something about 22q!)  It doesn't have to be fancy, it doesn't have to be expensive.  Post pictures of yourself wearing that shirt and working out.  Walk your dog with that shirt on, mow your grass with that shirt on, somehow make 22q part of this journey.

If you take pictures and you want to share them, post them on my son's Facebook page and I will share them!  If you haven't liked his page yet, head over there and like it, then start posting pictures of your workouts!

Has anybody done anything yet?  Has anybody made some changes they want to share?  Post in the comments!  Tell me what you ate today!  Or tell me what you *didn't* eat today!  Did you pass up a second piece of pie at that Labor Day picnic?  GOOD FOR YOU!!!

I did 2.89 miles with my dog, Ruby today.  It was *hot* and she wasn't feeling it today, she made me stop in the shade a few times and I ended up cutting the run short because of it.  I guess dogs have bad days too, right?  Look at poor Ruby in this picture!!

I was hoping to get in another 1 mile walk with the kids tonight, but things kind of fell apart after dinner, so I declared early to bed for everyone.  Is it a full moon or something?

22k for 22q, who's in?

It kicks off Monday!!  Spread the word, the more the merrier!  (if you have no idea what I'm talking about, see my previous post!)

I wasn't able to get much exercise in today because I had two sickies at home.  Gavin had a fever last night and Connor woke up with a cough.  Thankfully both of them were just fine at home today, no fever for either of them, and although Connor continues to cough and have little voice, he was acting fine most of the day.  So it's back to school for both of them tomorrow!

They're sick, can't you tell?  Crazy kids.  

There was a time that a small sickness like this would knock Connor down for *weeks*, it still amazes me to see him handle it fine!

So we only got in 1 mile today, but I did it fast!  I didn't time myself (I wish I had) but it was definitely a quick mile.  Ian and Connor rode their bikes, Gavin rode in the jogging stroller.  Ruby the dog ran with us (as usual) but I tried her with just a regular collar (vs the head halter she usually wears) and that was a mistake.  She hates the halter (it squeezes around her snout if she pulls) but she doesn't run well without it.  Since I'm pushing a jogger, I can't have her pulling at all.

I did pretty well with food today.  I had a Shakeology early this morning then I made Connor and Gavin some home made French toast for a late breakfast (whole wheat bread, 2 eggs, 1 cup of almond milk, and cinnamon)  I did put some syrup on it, and it wasn't even good syrup :(  I was really good at dinner, had a salad made with fresh baby spring greens with baked chicken and fresh Wisconsin cheese grated on top.  Then I experimented with some egg plant after dinner, a neighbor gave me some and I put some in a soup I made, the rest I tried with different spices tonight.  Turned out pretty good!

How is everyone doing?  Did anyone get in any exercise today?  Remember that *anything* counts!!  Did you mow the lawn?  Walk the dog?  Tell me about it!!

22k(ilograms) for 22q

I mentioned a challenge in my last post.  I was hoping to pique some curiousity, but I'm going to need some help!  In order to make this challenge work, I need to spread the word!  Share this link with others and get them involved!

Some of you may have heard of the International 22q Foundation's 22k for 22q event.  The idea is that you run, walk, bike, or swim 22 kilometers to spread awareness and fundraise for 22q.  It's a great idea!  Sign up for a couple local races, or form a team and sign up for just 1 local race then add your kilometers together.  Wear a 22q shirt and get some pledges from friends and family.

I thought I'd do a spin on that.  22 *kilograms* for 22q.  What do I mean?  I mean let's all band together and support each other while we work towards making ourselves healthier.  In doing so, we make ourselves better equipped to face the challenges of raising a 22q child.  22 kilograms is about 48.5lbs.  I would love for a couple dedicated followers to join me in pledging to lose a combined 22 kilograms in the month of September.  If I get 10 people to do it, we only need to lose about 4.8lbs each!  Totally doable!  If you all spread the word and we get more people joining us, I might just get to add a zero to that number and make it 220 kilograms for 22q!  Wouldn't that be awesome?!

Here's how it will work.  If you're "in", if you want to do this, then reply to this blog post with the following:  My name is <name> and my starting weight is X.  *Everyone put X as your starting weight!*  Then each week on Monday we will report in with:  My name is <name> and my weight is X minus ___"  So if you lost 2lbs you'd say "X minus 2".  That way we're not ever saying our actual weights ;)

I'll tally it up each Tuesday and post the results for the week!  We can all encourage each other in the comments (trust me, I can be quite the cheerleader!)  If you found some new recipe you like post it!  If you decided to start working out, tell us about it!  Hopefully we'll all feed off the positive energy!

I've gotten a bit of a head start by finding some routes around my neighborhood that I can run or walk.  This is from a webpage called Map My Run which has lots of neat features that I'm still learning.

Here are some pictures from some recent runs or walks I've done too!

So, who's in?  Who wants to do this with me?  When's the last time you did something *for yourself* that also helped your family?  It's time to think about yourself and your own health, if you commit to it you'll find quickly that it's positive for everyone!

Recharging the soul!

This is a long post, and it has a lot of pictures, you have been warned!!  But I promise it's worth the read.  Special needs parenting is a HARD thing to do.  Really hard.  It is *SO* important to learn to find balance in this journey, or you won't survive.  Sure, you will be ALIVE, but you won't be *living*.  Or your marriage won't last.  Or you'll quickly get depressed.  That's no way to LIVE.  I want to LIVE my life.  Here's how I'm doing that.

I haven't blogged for a month.  Not because I was lazy, quite the opposite actually.  But because this month was all about my husband.

Daddy's Home!!!!

After being gone for SIX months, daddy came home!  It was ah-mazing!  But only for 30 days.  So we made the best of those 30 days!  After a few days at home having fun around town, we headed to a hotel in Cincinnati for a 22q conference!  

If you haven't met the 22q bus yet, you're missing out!!!

After the conference we said goodbye to the boys (who were left in VERY good hands!) and Jim and I headed to JAMAICA!!!  You see, we got married 10.5 years ago, we were both young and we never got to honeymoon.  Then we started having babies.  In the 10 years we've been married, we've lived in 5 houses (which is impressive considering the last 6 years have been in the same house!), 2 states, and 2 countries.  The boys are now 8, 6, and almost 4.  It's been craziness.  We *needed* this.  With him being gone for the past 6 months, the timing was perfect.  

Jamaica was...awe-some.  It was the perfect mix of fun and relaxation.  

And don't forget the food!  Breakfast and lunch every day at the resort weren't anything that amazing, but WOW the dinners were fantastic!  I literally stuffed myself every single night!  

 This is tuna that friends of ours caught on a deep sea fishing tour!  They brought it back to the resort and asked the chef to cook it for us.  It was the best tuna I've ever had!!

We stayed at Sandals Montego Bay, and one of the things that I really liked about the resort is that they have a dress code.  By day it's beach casual.  But at night everything becomes very classy and elegant.  So I had fun dressing up!  (sorry for all of the "selfies" lol!)  

Don't worry, I have plenty of couples pictures too :)  

 Can you tell we had a GREAT time???  I mean really, just look at us!!!

This trip was exactly what we needed.  To be alone together, to recharge our exhausted souls, to remember what it was like when we were dating (not that we ever dated in Jamaica!)  

And when we got back, we kept it up!  Just this time with the kids.  First, Connor had a HUGE 22q awareness event!  He was nominated as a Home Run For Life Hero by Dayton Children's Hospital in conjunction with Blue Cross Blue Shield, so he was honored during a Dayton Dragons baseball game! It was a big deal.  He was interviewed for a radio spot, there was a newspaper article about him, his story was in the program the day of the game, we were given a fancy suite, and he was introduced on the field between innings where a video was played about him and he got to run the bases while everyone cheered him on.  I was truly blown away by the generosity of everybody, and I took full advantage of the opportunities to spread 22q awareness every step of the way!  Here's some of the info that was written about him!

Home Run For Life

In that link is a short video with his story and pictures of him, plus his sweet little voice at the end!  I could listen to that all day :)  There will be more pictures and more video from that day, but they aren't available yet.  Suffice it to say that the entire event was just out of this world!  A friend who was at the game texted me later and said "I guarantee you hundreds of people googled 22q from their phones right there at the baseball field tonight"  I sure hope she's right!  

After the excitement of that, we all packed up and headed to Michigan where our family is.  After all, they hadn't seen Jim in 6 months either!  The trip was wonderful!  We relaxed on the beach of Lake Michigan, rode bikes around Mackinac Island, rode horses at my mom's house, and rode a dune buggy on the sand dunes!  

After coming home it was time for school to start!  We're so proud of our three BIG boys!  Gavin is in preschool, Connor is in first grade, and Ian is in third grade!  Here's to a wonderful school year for everyone!

Whew!  And I'm not done yet!  There's still MORE!  Just this last weekend we had an opportunity to attend a fundraising event for A Kid Again.  A Kid Again is an organization that does "adventures" for kids with life threatening illnesses.  Every adventure is for the whole family, and every one is just amazing!  A wonderful man named Tim Riger was doing an ultra run and raised over $5000 for A Kid Again!  We went out to watch him finish his run (some people were out there the whole time!) and there was a news reporter there.  I was asked if I wanted to say a few words, so I did!  Here's what you get from me with 30 seconds notice on a hot day in the woods, no makeup, no script!  HAHA!  In the editing they ended up not mentioning that Connor has 22q, but that's okay, the point was that Mr Rieger did something amazing for some wonderful kids.  Check out the video and article!

A Kid Again ultra run

Here's a picture of the boys that day (my three boys plus a friend who came with us!)  

Like I said, it's been quite a month!  Unfortunately the month has to end, and daddy has to leave again, but we'll make it, just like we did the last six months.  

Which brings me back to why I started this blog.  How do I keep my sanity while raising three boys, one with 22q, alone for the next six months?  

I run.  

Obviously there wasn't much running that happened this last month.  And that's fine with me.  I may have gained a few pounds, and that's absolutely fine with me too.  None of that is important.  What was important was that I enjoyed my husband and my children.  But now it's back to taking care of *myself*.  

Today I ran 2 miles then later I walked 2 miles with the family.  It wasn't far, and I can already feel it in my shins.  But I needed it.  I also started a diet overhaul today, something else that I desperately needed to do.  Now it's time to set some goals.  Right now my next race is a fundraiser run for A Special Wish Foundation, who granted Connor his Wish in 2011.  All of the boys are running it with me!  Well, okay, Ian is running it with me, Connor and Gavin will be in the jogging stroller and I'll be pushing them!  More information to come on that, I plan to do some good fundraising for BOTH A Special Wish AND The Dempster Family Foundation!  Here's some info about the race:

Special Wish Run

Now a 5K race isn't far.  I could run that easily today.  And I won't be running that one very fast since the boys will be with me.  So I have my eyes open for another race sometime this Fall.  One that I can really *run*.  If anyone reading this is from the Dayton area, if you know of a good race, please tell me!  I'm back on track people, give me a few weeks and I'll be ready to go!  

Be sure to check back on this blog later this week, I've got a challenge in mind for you followers.  I really hope I can inspire some of you to work on recharging your souls, maybe we can support each other!  

The best laid plans...

Don't you just love how you can plan things, sure that you have covered every possible detail, then life laughs at you and throws you a curve ball?  Yep, that's been my last week and a half.

First some good news.  Connor had an opportunity to do a radio spot for 22q awareness.  He did fantastic!  He and I were interviewed a while ago and a script was written for him.  We practiced it together and when he was in the sound booth he did great!  I haven't heard the edited version yet, if I figure out how to upload it here I will definitely share it!!

The sound booth was a little intimidating, but the staff did a great job making him comfortable!!

We also were given tickets to a Dayton Dragons baseball game.  We had a lot of fun!  The boys and I love going to Dragons games, they are so family friendly!  We wore our awareness shirts from the Dempster Foundation and had 3 people talk to us about them.  Awareness success!

Connor had several appointments, and they were a mix of good/bad.  He saw Genetics and Developmental Pediatrics.  From a 22q perspective, Connor is doing fantastic.  But he is struggling with a neuromuscular problem that isn't related to 22q, it looks like Charcot Marie Tooth syndrome, which is in the umbrella of muscular dystrophies.  It's not a good diagnosis, and it bothers me on a deep emotional level that he would be hit "twice", first with 22q then with CMT.  His Geneticist reminded me that having 22q does not make him immune to anything else bad that can happen to him.  While I know this, it still feels...unfair.  We don't know *for sure* yet that he does have CMT, but his symptoms and his tests are pointing us that way.

On some level it's like starting over with the grieving process all over again.  It's been over 5 years since he was diagnosed with 22q, but this CMT diagnosis is new.

And for the last 6 months (including a good portion of the tests and evaluations for CMT) my husband hasn't been here.  He's off doing some very important work in a different country.  While we are able to talk every day, I wish I had him physically by my side for some of these appointments.

I want my partner back.

Hard to believe it was 6 months ago that we hugged daddy goodbye!  

There's also a bug working its way through our house.  Or perhaps 2 different bugs.  We're experiencing some tummy issues and some cold-like symptoms.  I woke up this morning feeling like razor blades were in my throat.  2 days ago I spent the entire day nauseous.  Gavin has been coughing and Ian has been spending a lot of time in the bathroom.

This isn't what I planned.

You see, my husband comes home in about 24 hours for 30 days of vacation.  24 hours.  We haven't seen him in 6 months, and we get sick in the days before he comes back.  If this guy Murphy and his stupid law could leave us alone, I'd be eternally grateful.

About 12 hours after Jim comes home I am supposed to be leaving for my next race.  A race I'm not exactly ready for.

But I will run.

It might not be pretty.  Assuming Jim's flight comes in on time, I am not likely to get much sleep at all the night before the race.  And if the flight is late, even less sleep.  I will have 3 very excited little boys, a very tired husband who will be thrilled to see us all, a whole lot of luggage to take care of, and possibly a late night dinner out as a family for the first time in 6 months.  Assuming he wants to eat, that is.  Total travel time to get home is 45 hours for the poor man.  

But I will run.

I will run because it's good for me.  I will run because overcoming obstacles is the point of this whole "marathon".  I will run because I can.  I may go slow, I may be sore later, but I won't be sitting on the couch all "woe is me".  Connor doesn't get to give up.  He's running his own "marathon" with 22q and now with CMT.  He can't throw in the towel and say "never mind, I didn't get enough training in, I'm going to sit this one out."  Nope, he wakes up each morning and laces up his running shoes and faces life.  So I will get up Sunday morning, lace up my running shoes, and run.

Oh, and as a "welcome home" bonus for my husband, I got my hair done!!  That's bound to put any woman in a better mood, right?

Is "exercise" a dirty word for you?

The words "exercise" and "work out" conjure up some unpleasant images for some people.  "I only run if I'm being chased" "I don't have time to exercise" "I don't like to work out" "It's too hard/too expensive/too time consuming"

It's time to shift some paradigms.

Unless you're training for something specific, this can be your workout (the grass needs mowed!):

Or how about this (picture taken at Columbus Zoo!):

Or this!!  (This is Connor, by the way, he's 5 in this picture!!  The kid's not afraid of anything!)

No matter the season!

Being healthy doesn't have to mean expensive gym memberships, fancy workout clothes, restrictive diets, or forcing yourself to do something you don't enjoy doing.

I enjoy running.  Sure, not every run, sometimes I literally negotiate with myself the whole run "If I run to that tree ahead, then I'll stop and walk"  But in general I feel better when I run.  Right now I am a single mom, my wonderful husband is out of the country doing very important work, sacrificing a lot for his family.  So I can't go for runs very easily.  He bought me my elliptical which I have put to good use.  But the majority of my exercise comes from just having fun with my kids!  We're constantly on the go and always looking for an adventure.  We dance together, we throw balls in the yard, we go for walks, we hike into the woods to catch creatures (newest additions to our menagerie include a larval mud puppy and a teeny tiny praying mantis!  Permanent members include 1 dog, 3 cats, 2 rats, and 1 fish)

So, what do you enjoy?  Do you like to dance?  Then crank up the radio and have a dance party in the living room!  Do you like to bike ride?  Invest in a bike trailer and take the kids with you!  Do you enjoy the peaceful solace of an early morning walk?  Set your alarm a bit earlier and enjoy that quiet time.  Do you love nature?  Then learn to geocache and head out as a family!  When your 22q child is at speech therapy, walk around the building several times.  When you're stuck in a waiting room, walk around talking to your child about things hanging on the walls.  When you have an hour in between appointments, go to the hospital's park and swing WITH your child!

Baby steps really do go a long way.

Turn those frustrations into drips of sweat

I wanted to scream, but I was home alone with 4 boys (my 3 plus a friend's son).  Many adults frown on other adults screaming in the vicinity of children (and if you don't frown on that, I'm concerned for you and any child near you!)

I couldn't scream.  I wanted to go for a run, but remember those 4 kids?  Yeah, I couldn't just leave them home alone either.  I wanted to eat some junk food, but thankfully had none in the house and the prospect of taking 4 kids to the grocery store sounded unpleasant.

So I plastered a smile on my face and cleaned my kitchen.

Please tell me I'm not the only one who cleans when I'm frustrated?!!  I find it to be a good stress reliever.  Although I have to really bite my tongue, because I often find myself getting angry about the messy house while I'm cleaning it.  I have to remember what I'm really angry about.  And it's not the house.

You see, managing a special needs child could easily be a full time job.  I could put in a solid 40 hours a week just doing appointments, therapies, phone calls, emails, records management, and insurance.  Then there's that little thing call *parenting*.  It still has to be done.  Go figure.

And oh right, I have 2 other children.

And a husband.

I am immensely grateful for the medical professionals in my son's life.  I really am.  I recognize just how much knowledge they have, how hard they work, how my son is not their only patient.  But while I acknowledge that, I simultaneously do everything in my power to ensure that my son IS the MOST IMPORTANT patient.  I understand that policies and protocols exist, but at the same time I DON'T FREAKING CARE about them.  I want what I want because it is what's in my son's best interest.

As you can imagine, I have quite a few run-ins with medical staff :)

Through this journey I've learned that you really catch more flies with honey, and since our options for medical care are limited, I can't go around burning bridges.  So I'm always polite.  I apologize for "bothering" them.  Until they tick me off, then I remind them that I PAY THEM.  If I get really ticked off, I threaten to pull my son from their care and take him to a closeby competitor hospital.  That tends to get people's attention.

I'm just a mom.  A mom who wants her son to succeed in life WITH his 22q, not DESPITE of it.

So I call Patient Advocates sometimes.  I work with the Clinical Concierge.  But just as often, I send praising emails.  If a staff member is exceptionally helpful or even just friendly, I try to remember to send an email.  If I get a survey card or phone call, I mention at least one person that has shown genuine compassion.

So after spending a good portion of the day today dealing with various "issues" I was very ready for a workout tonight.  I didn't get to it until 10pm, so it was a shorter workout than I would have liked.  But something's better than nothing, right?

Here I am...10:30pm...sweaty from a quick workout, a "hope" necklace, and a 22q shirt.  And a little less frustrations than I had before I started!

Let me tell you a little about my kids...

Ian is 8.  He's gifted, not just in the typical every-parent-thinks-their-kid-is-smart way, but in the "Mrs Block, we'd like you to consider grade skipping your son" way.  (we chose not to, for anyone who is interested)  Right now he's watching Myth Busters (again, he's seen every episode), earlier today he was watching the old Star Trek movies (The Search For Spock), just yesterday he was researching how fast impulse speed is.  Along with giftedness comes a little "weirdness".  And what a fun combination that is to try to parent!

There's a lot of sweetness in this child, along with his crazy smart brain!

Connor is 6.  He has 22q, but most people don't know a thing when they first meet him.  If he's wearing his hearing aids, they of course see that.  When he starts talking I sometimes get some raised eyebrows or sideways glances.  When they realize how old he is, that's when the questions usually start.  But often it doesn't get to that because Connor doesn't stay still long enough for anyone to notice.

See that "spark" in his eyes?  That is your warning!  There's a spit-fire personality here!

Gavin will be 4 this Fall.  He is as different from his brothers as he could possibly be.  Calm, quiet, he approaches life much slower and with much more caution.  He sleeps well, which is something his brothers still haven't mastered.  He thrives on one-on-one time, even if it's something as simple as grocery shopping!  And while at that grocery store if he asks for a donut, and I say no, he says "aw man!" and that's the end of it.  No crying.  No whining.  No tantruming.  (hmm, blogger is telling me that is spelled wrong, is it a made-up mommy-word?)

Calm, serene, cautious.  That is Gavin.  

These 3 boys are the light of my life and the reason for my exhaustion.  

Yep, no trouble makers here! 

Take today for example.  It's Sunday.  We usually go to church around 9am, eat breakfast at the cafe, go to the 10am service, wander around the connection center for a while after service, and make it home sometime after noon.  But today Connor's friend invited him to go swim at his grandma's house.  So a quick detour on the way to church to drop Connor off then we were on with our day.

And what a day!  After church and the requisite (and very necessary for me!) socializing we headed home.  I napped.  Ian watched some Star Trek.  Gavin played quietly with his trains.  Then Gavin napped.  Then I did some cleaning.  For a little while I sat in a lawn chair and watched Gavin play outside.  It was so wonderful!  No stress, most of the day I had no idea what time it was even.

Then Connor came home.  It was 9:30pm.  He came home exhausted!  And immediately started fighting with Gavin.  "No you didn't!"  "Yes you did!"  "Don't call me that!"  "I'm not sharing my pizza!"  "That's my water!"

DEFINITELY no trouble makers here!!

Let me be clear, Connor is a great kid, but the stage that he and Gavin are in is really difficult for both of them.  Gavin would like nothing better than to be an only child, to have his mommy to himself, to have hours every day to be alone playing with intricate toys.  It's just his personality.  Connor is like a mini tornado, running through life leaving a trail of devastation (and happiness, and giggles, and dozens of friends) behind.  He makes friends at Chick Fil-A play places and excitedly plans play dates 5 minutes after meeting them.  He rides his bike recklessly (and falls and leaves skin behind but could care less!).  Toys are not safe in his presence, pieces are lost, hinges are broken, wheels inexplicably fall off.  As you can guess, those two personality types tend to clash once in a while.

Not surprisingly, I decided that a nice couple miles on the elliptical are in my future tonight.  It's late, I know, but I enjoyed a lazy day, so I better hit up the elliptical and sweat away the frustrations of my 3 crazy kids!



All photos courtesy of Winter-Freire Photography