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

My Wake Up Call...What Will Yours Be?

I finally went to the doctor.

For myself.

Not sure when the last time was that I did that.

Thankfully, I'm rarely sick.  At least not sick enough to need a doctor.  Also, through my journey with raising children, I have found that I am preferring a natural approach to health whenever possible, so you'll find me treating a sinus infection with a concoction of vitamins, herbs, steam, rest, etc instead of turning to antibiotics.  I believe that chiropractic care and massage therapy can help heal a body.  I tend to be distrustful of pharmaceutical products and lean towards natural/homeopathic remedies.  So really I often just don't have a need for a doctor.

But there have been some very significant changes in my personal life in the past 6 months, and I'm feeling the effects (affects?  I hope no English majors are policing me!) of them.  I decided to try a new doctor, someone I know from church, and hope that I would like her and work well with her.  I need someone that I trust, someone tolerant of me declining most vaccines, someone tolerant of me wanting to research literally everything, you get the picture.

So I went.  And I loved her :)  But I didn't necessarily like what she had to say.

In the past 6 months my husband went from being a stay at home dad to being employed overseas for a year.  I went from being a working mom to being a stay at home mom.  I weaned my youngest from breastfeeding (I have been continually breastfeeding for over 8 years, even breastfed through pregnancies and tandem nursed my children).  Connor was admitted to the hospital twice and is now facing a new diagnosis (a neuromuscular disorder not related to 22q).

In other words, my life is haywire.

No surprise, I've gained some weight.

I told you all that this blog would be a real life journey of a very normal person, well here I am!  I also have ups and downs, times of great focus and success and times of near failure, times when I run marathons and times when I sit on the couch with a bag of potato chips (I prefer tortilla chips actually).  This blog is about persevering through those periods and remembering to focus on MY health, MY sanity, not just my children's.

Connor's 22q isn't going anywhere.  But I am.  I'm going for a run tonight.  One step at a time, I'll get myself back on track.

I've already gotten a few messages in response to this blog, people who have told me they are appreciating this "wake up call".  Well, let's do this together!


Sweat away the frustrations!

Feeding your mind, body, and soul (and sweet tooth!)

So let me start this post with a confession.  I am by no means an expert at any of this.  If you came here for expert advice, I will be happy to point you to smarter people.  If you came here for motivation, I'm your gal.  If you came here to see a real person living real life and doing the best she can (which means failing sometimes), I'm definitely your gal!

Let me also say that I'm a smart person.  Sure sure, I have a college degree, but that's not what I mean.  I mean that I have basic logic and basic research skills.  I *KNOW* what foods are good for my body and what foods are bad for my body.  That part isn't hard.  I even *like* the taste of many fruits and vegetables.  I'm even a good cook and am very good at sneaking healthy foods into my kids (they have no idea how many vegetables are in their spaghetti sauce!)

But I also tend to be lazy.  And I often fall into the trap of being out and about taking Connor to doctors over an hour away (which means I have to plan 2 hours to get there to account for traffic, parking, and time from parking garage to the actual registration desk, plus arrive 15 minutes early, the whole deal)  So a 30 minute appointment means I'm away from home for about 4.5 hours (2 hours there, 30 minutes with dr, 2 hours back)

It is too easy to swing through the drive through.

Or hit up the hospital cafeteria.

And don't even get me started on my coffee addiction.  Not just black coffee either.  Dang it, why can't I just drink my coffee black??  And WHY did McDonalds have to put their iced coffee on sale for $1 any size all summer anyway?????

I go through phases where I really focus on my nutrition.  I know that good food feeds more than just my body, it fuels my mind and even my soul.  I FEEL BETTER WHEN I EAT GOOD FOOD.  So why is it so hard to do?  So I'll get off track and after a while I'll start to really hate myself.  I don't like how I look.  I don't like how I feel.  It's amazing to me how fast it rubs off on other areas of my life too.  My nice clothes start to get tight, so I wear my more comfy clothes.  If I'm wearing my comfy clothes, why care about doing my hair or makeup?  Why put on cute heels when flip flops are just as good?  Suddenly I'll wake up and realize exactly what's happening.  And I'll vow to change it.  And usually I do!  I will set some simple rules and then reward myself for sticking to them.  As I start to feel better I'll add some more rules.  I try not to deprive myself.  So my rule will be something like "1 fruit with every meal"  Then "1 vegetable with every meal"  (and those both have to be something in addition to what I was already having, so if I was having spaghetti I don't get to count all the veggies I added to the sauce, I have to have an extra veggie and an extra fruit)

It's true that the small steps really do add up.

But what to do about the half day long appointments?  I haven't gotten good enough to plan ahead and pack food.  But I will make deals with myself.  Something like "if I choose the baked chicken, I will let myself have the coffee."

I will put a plug in here for ViSalus and Beachbody.  If any of you know them, you'll be shocked I just wrote those two products in the same sentence (they're competitors).  I've tried both products and I loved them!  It's a perfect solution for days when you know you'll be out for hours and you want to avoid the drive thru.  Make a shake before you leave, put it in a cooler with ice, drink it half way through the day, you'll make it home still satisfied and knowing you got something much healthier than any drive thru or cafeteria!  (you still have to feed your kid though!)

My confession to all of you is that I'm writing this partly to motivate myself to get back on track.  My husband has been gone out of the country for the last 5 months and I got laid off from work 4 months ago.  I'm definitely struggling to find a good routine for both fitness and nutrition right now.  But this is my pledge to put these rules to work and get focused again!  My next race is in only 26 days, it's a short one (Mud Ninja, only 5K and 20 or so obstacles) but I'm sure will still challenge me, so I'd better get focused!!!

Here's my obligatory picture for today, I got 2 miles in on my elliptical before I was interrupted by a phone call from our insurance case manager.  45 minutes later when I got off the phone (with the billing issue still unresolved...sigh...) it was time to get ready to take Connor to an appt, so I never finished my last mile.  2 is better than none, right?