Day 7 - I believe in James...

On Day 7 I believe in my husband - Evie's Daddy (James is what other folks call him...) 

Evie and her dad are two peas in a pod.  They are the same person - no joke.  They think the same things are hilarious and they have the same taste in music (not sure what that says for James, but they have some pretty awesome dance parties anyway). 

James can also motivate this kid more than anyone else.  He is thoughtful in how he encourages her and what he proposes, and his impact is great.  James is the one who proposed the non-traditional therapy of Tae Kwon Do - something that has made a world of difference for Evie.  He is the one, through his charm, I suppose, who has Evie eating healthy and working out  - something important for her development.  He is also the one who taught her to pedal a bike and pump her swing - something that brings her great joy.  He is also the one she loves to hang out with - this weekend they were building togehter - and the one she turns to when she needs to feel safe.  She is a daddy's girl that is for sure. 

So today, and everyday for that matter, I believe in my husband James. He has been a great support and advocate for Evie and I am lucky to be on this journey with him.

Day 4 - Pink shoes!

I want to end the week with a light post — today I believe in Nike. Why, you ask? Because Nike has solved a huge problem in our house.

For years I have been searching for “cool shoes” for Evie, a pediatric stroke survivor who has hemiparesis. She is at that age where she wants what the other kids have but, to her great dismay, Crocs, Uggs,Twinkle Toes and Flip Flops do not accommodate a brace, nor are they safe for someone with her balance issues. Her tennis shoes were never cool enough and it was always a battle to get her to wear them when everyone else was prancing around in their fun footwear. Not only did it lead to tense mornings, but it made me a little sad – I too would be upset if I had to wear the same shoes everyday – especially if they were as unexciting as her shoes were.

The answer to our problems came in that bright orange Nike box. Evie loves these shoes! And who wouldn’t? They are comfy, they are easy for her to get on and off and they are PINK!! They are also wide and accommodate her foot brace beautifully – but that is not Evie’s concern, as you can imagine. The only thing that makes me a little sad? The Easter Bunny got all the credit for my incredible find….

So Nike – I believe in you! Thank you for your bright pink Nike Free Runs, which make our mornings less stressful and put a smile on my daughter’s face.

Day three - shake your booty!

Okay, follow me with this one. I believe in the power of a laughter and a sense of humor. Don’t get me wrong – there is nothing funny about the situation that Evie is in – it is very serious, I know that. But the only thing that has kept me going at some points in the last four and a half years is humor.

I was very fortunate to marry a very fun and funny guy and, luckily, our children are both very funny little people as well. There is a lot of laughter and silliness in our house – random dance parties, inside jokes and tickle fights are daily.

Because of who I am and who my husband is, we hope that Evie won’t take this all so seriously when she is older. She must take her health care seriously, we know that, but all of the other junk – the questions, the stares, the set backs, the challenges – that can benefit from some lightheartedness. She is not a victim. She is not to be pitied. Being angry or upset takes a lot of energy which, quite frankly, is better spent laughing and enjoying this one life you have.

 I hope she strives to be a “glass half full” type of person instead of seeing all of the bad which can be overwhelming at times if you let it.

I believe that laughter and a sense of humor is an important quality that we must encourage in Evie. Hopefully it help her get the most out of life and her relationships with other people. And with that, I’m off to “shake my booty” as we say at our house…

Day 2 - the hardest person to believe in...

Today I want to share a struggle I have with this whole “believe” theme. Believing in myself. Believing in my instincts.

My daughter, Evie, had an episode this past weekend that scared the heck out of me. Unresponsive. Unsteady on her feet. Couldn’t talk. No color to her face. Gray/blue lips. I instantly thought, “she’s having another stroke!” I rushed her to the ER. They ran some tests and determined that she was ok and most likely had a seizure. I was so thankful.

But as I sat there and watched her sleep I started second guessing everything I did that day. Maybe we should have stayed at home and waited it out. Maybe I overreacted. Maybe I wasted people’s time. Maybe people think I’m crazy….

But then I spoke to a mom more experienced and wiser than me. She reminded me that I know what I’m doing. I know my daughter. Thankfully it wasn’t serious, but it could have been. And so what if people think I’m crazy.

Her words reminded me that being a mom to a stroke survivor isn’t easy. There are no right answers. We are forced to make decisions which we maybe aren’t comfortable with or we aren’t trained to make regarding the care of our children. But we have to keep making them knowing and believing that we know our children better than anyone and those decisions are best for us no matter what the outside world thinks.

So this is something I’m going to work on. Believing in myself. And trusting that the choices I make are right for us. And If that makes me crazy, so what?

Day one of 2012 streak~

People tell me how lucky Evie is that I am her mom. How lucky she is to have parents that push her and help her succeed. How lucky she is to be born into our support system of family and friends.
But that isn’t the case. I am the lucky one. Her dad and our family and friends – we are the lucky ones.

Pediatric Stroke Survivor on a Mission

Since the day this little girl was born she has been on a mission. Her diagnosis at six months old of right-side hemiplegia due to in utero stroke made that mission clear to the rest of us, but she was already well on her way. Her spirit and determination are evident in everything she does. I have never, ever, ever in her entire life (all 4.5 years) heard her say “I can’t do that.” She may not do it the way you and I would, but she gets it done – and she does it all with a smile and pure joy for life. She loves everything about being on this earth and you can’t feel sorry for someone that lives her life that way.
So what has she taught us all on this little mission of hers? She has taught us that believing in yourself and believing in others is the most powerful gift you can give yourself or someone else. That gift can take you places you never imagined you could go and lead you to accomplishments beyond what is expected.
I believe in Evie. She believes in herself. And even better? She believes in me. Now you can see why I’m the lucky one?

Paying it Forward

So what am I doing for my Streak for Pediatric Stroke this year? I’ve decided that I am going to pay forward what my little one has given to me. I am going to “believe” in something or someone everyday for 31 days (I won't be posting on the weekends - that is family time!).

 I imagine this will take many different forms – praising those who are doing well, encouraging those who are going through a difficult time, expressing what people mean to me…. But I’m going to find creative ways to get it done (with a smile!).

Today? Well, I think you can see above who I believe in today. I believe in Evie. I believe her mission is far from over and she is going to do big things. And I believe she will continue to change my life.

The streak is complete!

Did you think I gave up that close to the end?  Think not!  With family in town I didn't have the chance to update the blog the last few days of May - but I did it!  And I plan to continue this active streak for the rest of the year. 

So, what have I learned?

• I need to accept limitations.  Everyone has them - I do (as in - don't run EVERY DAY) and Evie does too.  It's not a sign of weakness or something that needs to be fixed - it is what it is.

• BELIEVE.  I know I said everyone has limitations, but you can get a lot more done than you could ever imagine if you believe it.  The power of positive thinking....

• Alone time makes you stronger.  My mind felt clear and I felt empowered with just that thirty minutes of "me" time.  I will not feel guilty about it any more.

• Love is the most powerful thing in the world.  I love my daughters with all of my heart - in a way I couldn't have explained to you four years ago, and I will do anything in my power for them. 

• God chose me to be Evie's mom.  I don't know why, but I am so, so glad he did. 

• And, finally, Evie is going to do big things.  I know every parent says things like that - as they should - but I have seen big things already.  She loves a challenge....

Butterfly on her shoulder...

Thanks for following me on this journey and I think I might just continue this little blog to talk about my experiences raising Evie.  This has been therapeutic in a way.

If you feel inclined, share the story of Evie and pediatric stroke with someone today.  And... who wants to streak with me next May?!?

~Jana

Day 26

What a day!!!  Work was... well.... it wasn't fun - I'll say that. 

I got my sit ups in after Delaney went down for the night - couldn't do many push-ups - the arms are burning, which is a good thing.  Is it just me or is the instant side effect to having a child getting fat arms?!?  Why the arms?  I find myself avoiding anything sleeveless with these chubby arms I have right now... argh!

We have been having trouble with Evie and headaches lately.  She has complained at least one day a week for the past month.  Are they real?  How do you tell?  For right now we are keeping track of the days and times and making her lay down immediately when she complains (sometimes that will cure them instantly :)), but it does concern me quite a bit.  We probably need to get a referral to a new neurologist - one that specializes in kids like her.... 

I hope you all have a fabulous weekend.  Only four more days left in the streak!!

~Jana

Day 25...

My streak is suffering due to a crazy work schedule.  Didn't get home until 11 pm tonight so there was no running for me - and I had to rush to even get my sit-ups and push-ups in before the clock hit midnight!! 

I actually feel awesome right now it is merely the work schedule that is keeping me from getting out there.  I can't seem to drag myself out of bed in time to run in the morning when I am up half the night working...  If I can just get to Saturday it should all settle down... at least for awhile...

The struggles of being a working mom are crazy and I am feeling it even more right now.  The only reason why I saw Delaney tonight was because she woke up for a bottle - I didn't see Evie at all...  I feel robbed after nights like that - but I will make up for it in the morning with some quiet snuggle time with both of them - I can't wait for this weekend!!!

How is everyone else's streak going?!?  We are in the home strech - less than week left. 

~Jana

Day 24

Had a work function that kept me out late so I had to settle for some sit-ups and push ups.  Man! I am weak!  You would think lugging a little on around all the time (and I mean ALL the time these days - she won't let me put her down) I would be a little stronger...  I have to get this body back into shape!

We got a note in the mail today from Evie's preschool teacher and I wanted to share what she had to say about Evie:  "It has been such a privilege getting to know you these last few months.  Your love of life and determination have been an inspiration to all of us..."

That pretty much describes her - despite her challenges and struggles she really does truly love life. 

This morning we went through everyone coming to town this weekend and she concluded by saying "I want all of these characters to watch me ride my bike."  She was right - they are a bunch of characters, but we are so glad they will be on their way shortly. 

~Jana

Day 23

I'm back!!! Slowly but surely I jogged for thirty minutes tonight!  I am very pleased to be back out there and I hope to continue for the next eight days.

I am trying to get a lot done at work this week as we are having LOTS of family in this weekend for Delaney's baptism.  It will be so nice to see family.  It is difficult to be so far away from everyone and there are days I feel like we should pack up and head closer...

Have a great Tuesday everyone!

~Jana

Day 22...

We did a lot of yard work today - planting flowers and hanging planters.  I also did 20 push ups and 20 sit ups.  Thought I might get to run today, but I really don't want to push it.  One more day of rest on the joints I think.

Evie pointed with her right hand today to show me something without being promtped!  Sounds small, but its a big deal to us!!!

~Jana

Day 21...

It was actually a beautiful day today! Nice change from all the rain - although I hear more is coming.  Evie and I went out for a long bike ride/walk.  We are working on learning to pedal her bike.  I have to get her going with my hands, but she can do it pretty well! 

Running may happen tomorrow... the knees are feeling almost normal! :)

~Jana

Day 20...

Stretched with Delaney tonight.  She is very flexible as you can imagine! :)

I'm a little disappointed in myself, but once I get feeling back to normal I am going to run again!

~Jana

Day 19

Stretched again tonight. Planning to walk tomorrow night and Saturday and hopefully run on Sunday.

Tonight was rough. Evie was very emotional about her night brace. Saying she was scared and that she didn't want to wear it. Normal kid stuff. But then she did what I have been dreading. She asked me "why?". Why does she have to wear a brace. Wow. I am hardly ever at a loss for words but I didn't know what to say. She is only three so there is no need for details, but I am absolutely sure she has heard me discuss her stroke.

So I told her that we work really hard with her therapists and doctors and wear these braces because they will help her run and jump much better and if we do all this now, when she is bigger like Marli (we always use her aunt as the example of an adult) she won't have to wear braces all the time. She seemed convinced and put on the brace without a fight.

I know more and more questions are coming but I have no clue what I am doing and the right way to answer. I'll do my best!

The streak continues!

~Jana

Day 18

Happy to report I am well on my way to healthy! Knees are feeling almost back to normal today!

I stretched again today with Evie.  She is keeping the stretch well in that right foot and we are also working on stretching through her shoulder - her right arm appears shorter than her left b/c she can't extend it out all the way.

Evie and I had such a good afternoon even though it involved new braces.  I love having our girls days - just wish so many of them weren't for doctor visits...

I thank everyone for their advice.  I think I was way too ambitious with my streak and I have decided that I will get some new running shoes this weekend and challenge myself to running at least 3 days a week with a nice walk on the days in between... 

Thanks for your support everyone!  And remember to spread the word about pediatric stroke.

~Jana

Day 17

S-T-R-E-T-C-H-E-D tonight.  Evie was not in the mood - she complained of a headache all day - so it was just me.  I got a lot of feedback from my runner friends - thanks guys!  I think I will go get fitted for some new running shoes this weekend.  Until then- I am going to stretch and maybe do some yoga for my streak so that my joints will heal.  And thanks to Jess for her always insightful and honest views on Evie - you are such a great example for her!

Evie is picking up her new orthotic tomorrow.  She has to wear a brace during the day and a brace at night.  The day brace is designed to prevent "toe drop" and keep her achilles stretched - a lot of kids like her have to eventually have heel cord lengthening surgery - which we have been told is very painful - so we are doing our best to prevent that.  The night brace will just keep her positioned well and stretched throughout the night... 

It is always a difficult balance I face.  There are days she doesn't want to stretch (like last night) there are days she doesn't want to wear her brace and although she hasn't said it yet, I imagine there will be a day she doesn't want to have therapy.  I have spoken to many moms about it - how much do we force our kids to gain abilities on their weak side when they can do everything - in a different way - with the "good" side.  There are programs where they cast the "good" arm forcing a child to use their weak arm in the hopes of rewiring the brain.  But, what affect does that have on their self-esteem when they suddenly can't pull up their pants - which they could do the day before....  I'm not sure.  I do know that making her feel like she needs "fixed" is not the answer. 

So... what is best?  Working hard to maybe "lessen" her disability by giving her some use of her affected side or letting her learn how to navigate in a world with just the abilities she has?

I  know that quitting therapy is not an option for me.  I see improvement everyday with her therapies so I believe it is beneficial.  Will it give her full use of her weak side?  Probably not.  Will it give her enough use to help her navigate in her world?  Absolutely. 

The other reason it isn't an option is selfish on my part.  I would rather "make" her do her therapy and wear her braces, see all these doctors now and do all I can then face a 20 year old Evie who is mad at hell at me for not doing more. 

I promised Evie long ago I would do everything in my power to help her and that is one "streak" I have never broken....

~Jana

Day 16...

Folks - its not going well at all.  My knees and ankles are killing me and I can barely walk let alone run.  I am living on ibuprofen.  I have no idea what the heck I did.  I am not an athlete by any means, but I have always been able to engage in physcial activity with no problem.  I hate saying this out loud but.... am I getting OLD?!? 

Enough of the sob story - I am sure there are days that Evie hurts like heck but keeps going.  I often wonder if she is in pain every day or what her affected side feels like.  I have heard from some older kids that it feels like your limb is "asleep" all the time.  Whatever it feels like, you wouldn't know it by meeting her.  She is the happiest girl in the world most days and she is always finding something fun to do. 

So... what did I do for Day 16?  I stretched for 30 minutes.  Stretching is very important for Evie, so her and I sat in bed and stretched our legs and heel cords and arms....  I feel like a failure - from running to walking to yoga and now stretching?!?  I have to get back out there.
Day 17 may entail a trip to the Doctor....

~Jana

Day 15...

Rain rain go away!!!  It is a dreary day here in the Bluegrass - but I put on my gear and headed out, after a day break.  I was in tears my knees hurt so bad, so after a quarter mile I headed back home.  I don't know if I need to see a doctor, or if I am just that out of shape - but it was killer!

So I decided to do some yoga with Evie.  She put on her new workout gear (can you believe they make running clothes for kids her size?!?) and we got to it right there in our living room:

Let me tell you all - she is pretty good at it! 

I am hoping that I am still just a little worn out from a crazy week of fundraising, and that this is not an injury.  I need to get back to running!!

I hope you all are having a good weekend and I hope your streaks are still alive and going strong!

~ Jana

Day 14 :( :(

We had a very successful event last night!  Raised over $7,500.00 for CHASA!  But, my body is suffering...  I can barely walk - let alone run.  So I am taking a day of rest.  I will make it up with a two-a-day or through the first of June... I promise! :)

Today is a sad day for our CHASA family, as one of our families had to say goodbye to their survivor way too soon.  My heart aches for this family.  Say a prayer for them as they go through this hard time, hug the ones you love and remember how lucky we all really are.... 

~Jana

DAY 13!!

Strikes for Pediatric Stroke is all I did today (after I was done with work at noon).  Therefore, I did not do any running/walking today.  I figure I will be up and down the 40 lanes of the bowling alley at least 40 times tonight - so I think that will be plenty of physical activity for my streak - and it is ALL about Evie and the children of CHASA so I know it qualifies there.

Here is a photo of the set up before people arrived:

Purple purple everywhere!  You can still donate by following the link to the right...

~Jana