Parker's Birthday Letter

This is Parker's birthday letter that is going in his baby book. My plan is to write one every year. I can't believe he turned 1!!


Dear Parker Jay,

On the one year anniversary of the day you changed my life, the day you changed all of our lives, I want to tell you yet again just how much I love you. You are the best thing I have ever done. You define me and give my life meaning. You, with your cure-all belly laugh and your smile that is so wide I could drown in it, you, have given more to me than I could ever give to you. You have made me a mother. You have taught me to live in the moment – let go of the past, embrace the future but soak up every ounce of the now. You have taught me it is more than ok for things to be imperfect. You have taught me that it is better when I do not have control. I am a stronger, nicer, and happier because you are mine.

I am not the only one. You are surrounded, SURROUNDED by people who would literally walk on fire to be with you. Your father, for example, has booted me from my position as his best friend. You two are inseparable. He loves you and you have him wrapped around your little finger so tight that he has actually lost all hope of recovering. Your Nana and P-Daddy and Grandma and Grandpa dropped everything they were doing when you were born to be with you. They cry when you cry and are happy when you are happy. They make idiots of themselves making silly faces and noises to make you laugh. You have infused your spirit into their lives and taken over their hearts. You have aunts and uncles, great grandparents, cousins, friends, great aunts and uncles, second cousins who eagerly wait for holidays and special visits, who LOVE to see your sweet face and who brag about you to anyone who will listen. You even “get” people you have never met! You start these precious conversations with total strangers waving and smiling at them relentlessly until they give in and laugh. You have caved even the grumpy medical school professors who look physically to rigid to smile. You are so loved Parker Jay. I hope you always always feel it in the core of who you are. You are perfect to so many people.

I love how you cross your feet when you are eating. I love that you are scared of Tickle Me Elmo and come to find me when someone turns it on. I love that stop by my lap every once in awhile when you are playing to lay your head down. I love that you know what is yours and what isn't, but want it all anyway. I love the way your breath smells in the morning adn the way your hair always sticks out everywhere. I love the way you laugh and I love the way you throw temper tantrums. I love the way you love life.
You are so passionate and so strong. I know right now you are passionate about holding onto the keys when we need them to open the door, or holding the lap top by yourself, but I just know that one day your passion will mature and you will change the world. I just know it.

I have waited my whole life for you. You gave birth to me as much as I gave birth to you. Thank you, thank you for doing such an good job raising me. I will spend the rest of my life trying to return the favor.

I love you with all of my heart.

Love,
Mom

a glimpse into our crazy life...

In the words of my favorite character on TV, Golden Girls' Sophia Patrillo "Picture it"...it was 2:30 am this morning....our apartment. We were all sound asleep until Parker woke up crying, wanting "milk milk milk". It is unfortunate for him that he has two nut cases for parents.

Because we were so soundly sleeping, we were also deep in our own dreams. Jon was dreaming that Parker's cd that plays all night in his room had been replaced by a cd featuring the sound of a crying baby. He dreamt that Parker had woken up, but every time he fell back asleep, the cd of the crying baby woke him up again.
I was busy dreaming that I had lost the ability to tell time.

So poor Parker wakes up and instead of being the caring and attentive parents we usually are in the middle of the night, rushing to meet his needs as quickly and efficiently as possible so we can all go back to bed, we carried on this conversation:

Parker: "WAAAAAH WAAAAAH"
Emily: "I dont know what to do! Is it morning? Am I supposed to go get him?"
Jon: "Its just a tape, go back to sleep. I can't take it out now"
Parker: "WAAAAAAAAAAAAH WAAAAAAAAAAAAAAH WAAAAAAAAAAAAAAAAH"
Emily: "I don't know if it is time to go get him. Is he hungry?"
Jon: "I can't turn it off!!!"

Poor poor Parker Jay....after a minute or two we figured out that he was awake and he, I am happy to say, got his milk and went right back to sleep. It wasn't until late this afternoon that Jon and I put together the pieces of what happened!

I LOVE JON HEBDA!!

I love Valentine's Day!

Photo and video editing at www.OneTrueMedia.com

WALK ON BUDDY!!!!!

PARKER IS WALKING!!!

I was sitting on the couch at Thad's house, feeding Stephan in my lap.  Parker was holding onto the coffee table in front of me saying "ma ma ma" which is actually "milk milk milk" not "mama mama mama".  Anyway, all of a sudden, a little bald head darts across the living room!  I realize Parker has let go of the table and taken off for behind the couch.  

"YOU'RE WALKING!!!!!" I screamed - completely scaring him.  He crashed, slamming his face into the door frame of the back door leaving him with a HUGE goose egg on his forehead and a swollen knot on his nose! He screamed bloody murder for like 30 minutes!  I thought he broke his nose.  Even still - I kept saying "I'm so proud of you!"  "You did it!!".  

What a great moment!  Aside from the crash landing, it was perfect technique if I may say so myself! 

Congenital Heart Defect Awareness Week

Today is the first day of Congenital Heart Defect Awareness Week! I have posed several posts on statistics, history of pediatric cardiology, and our own experiences with Congenital Heart Defects. This cause is really important to my heart. I wanted to share some news from our Mended Little Heart coordinator, Jaime. This is her email:

Mended Little Hearts has been working with the American Heart Association so that they understand how the CHD Community feels about the lack of awareness. Today, they put a ticker the top of the their national website (www.americanheart. org) about CHD Awareness Week. It links to info about CHD, and that page has a link to Mended Little Hearts. Not only that, but they sent a press release to all of their affiliates about CHD Week and about MHI and MLH. It is fabulous!!! This is huge compared to what we had in the past--very huge.

Obviously some huge steps :-) I have not heard word about the tv campaign adds but will definitely let everyone know if that works out!!! Right now, AHA only donates 1 cent of every dollar to CHD!!! Things could be SO much better with a little awareness. I don't need to spit off more statistics for why this is true. I do want to post a poem written by a mother, Stephanie who has a daughter who has gone through 3 open heart surgeries and is still hoping for a complete repair.

While I feel sooooo blessed that Parker's heart is completely repaired, it still makes me sad that there are so many families living day to day with fear! I think this poem by Stephanie expresses what life is like for these families.


You passed me in the shopping mall...
(You read my faded tee)
You tapped me on the shoulder...
Then asked...`"What'a a CHD?"

I could quote terminology...
There's stats that I could give...
But I would rather share with you...
A mother's perspective.

What is it like to have a child with a CHD?

It's Lasix,aspirin,Captopril....
It's wondering...Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held him...(I'd waited so long)
It's knowing that I need...to help him grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking his sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths,x-ays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do his nails look blue?
It's cringing inside... at what he's been through.
It's dozens of call to his pediatrician...
(She knows me by name...I'm a mom on a mission)
It's winter's homebound...and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching him sleeping...his breathing is steady...
It's surgery day...and I'll never be ready.
It's handing him over...( I'm still not prepared...)
It's knowing that his heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying...it's hoping...that he'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected...
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching him chasing...a small butterfly...
It's the moment I realized...I've stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

And no...we'll never be the same...
It's changed our family...
This is what we face each day...
This is...a CHD.

Parker sat through Church!!!!!!

IT's A MIRACLE!!!!! I have spent Sunday after Sunday in the church cry room with this boy! We have not gotten so far as the First Reading before we headed off! He squirms, cries, throws things, pulls random people's hair, and causes general chaos and destruction for an hour. Sure, I could leave him in the nursery, but you know I am neurotic and would never leave him with a stranger!
Anyway, today, just seven short days after turning one (my how the wheels of maturation are turning now!!) he DID IT!! We let him have some space and gave him his own seat in the pew! He played quietly with his toys in his lap during the reading, ate a snack during the homily, stood quietly in between us on the kneelers during Communion, and smiled at everyone who walked by! It was AMAZING! I am so excited! Jon and I had decided to really make an effort this Lent to refocus, re center, and reconnect to God and our Spiritual lives together. It was such a blessing to be able to participate in Church this morning. I feel like I am starting out this season on the right foot!! THANK YOU PARKER!!!!!