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