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