It's a Heart Matter

We've been preparing for the Congenital Heart Walk of Pittsburgh. The walk was today and over 500 walkers came and raised over $55,000.00 for Congenital Heart defects. Our Mended Little Hearts team raised over $10,000.00 and had over 100 walkers! (AMAZING!)

Why we walk:

CHD (Congenital Heart Defect) is the #1 Birth Defect. 

It affects 35,000-40,000 babies born every year

And CHD is Grossly under funded. (Advocates like the Adult Congenital Heart Association and Mended Little Hearts are trying to change this!)

The Children's Heart Foundation provides research grants to the brilliant minds out there who are finding answers and cures. Money that is critical to their success. We need more research and more research money to save more lives!

Advocating and Raising Awareness is vital to CHD's! Again....Raising awareness and advocating saves lives! And raises more money...which saves more lives!

Today was all about raising money for those 3 National organizations. EVERY SINGLE DOLLAR goes straight to CHD's. Every dollar raised will directly impact our CHD Warriors. 

My Clan with Dr. Stephen Cook

Did you know that as children with CHD's grow into adulthood it's imperative they are followed with their Cardiac care by a doctor who specializes in Adult Congenital Heart Defects? Their hearts are NOT like "typical hearts" and a typical Cardiac doctor won't be able to provide the best care! Dr. Cook is the Children's Hospital of Pittsburgh's Adult Congenital Heart Specialist. 

My Heart Warrior, Little Baer (Who btw....looks pretty darn irritated at me in this picture. haha)

He was born with an AtrialVentricular Septal Defect. (A hole in the Center wall (Septum) of the heart which encompasses all 4 chambers.) His repair was done at 3 months old. He still has a subaortic membrane, which is causing subaortic stenosis. He will require another open heart surgery, at some point. 6 mths? 1 year? 2 years? The timeline is unknown. A lot of the CHD world is unknown. It's all about waiting and patience. And faith and prayer. 

 My Big girls:

Always there to support us in our journey is Goldilocks and her girlfriend (Which...btw has no name. she needs a name....I have the 3 baers and momma baer and papa baer and Goldilocks. She can't be the big bad wolf..cause she's just to sweet. haha) They donated an autographed Penguins hockey puck of theirs to raise money for the walk! How cool is that?

 My dear friend Patty. She runs the Children's Heart Foundation, PA Chapter. 

I must say, Patty has been an amazing friend. I specifically remember her reaching out to me during a hard period for me and asking if I was ok, only because she knew me and knew I wasn't alright at the time. I love her! Her dedication inspires me! I wish we didn't live on the opposite ends of a huge state. :)

Laura and I! Laura is a Cardiac Social worker and is one of my very first contacts with Children's Hospital. She has been such a supporter and friend through our process of building our group here. We laughed and shared how it was so nice to see each other "out of work" when we had some time to chat. 

Me and "She who is yet to be named" acting silly! 

Oh Baby Baer is finally growing some hair. Now if we could control it! 

Mama Baer and Goldilocks. I love this girl! she really has become an amazing woman and I'm so proud of her!

She has had a lot on her shoulders as a big sister through this journey. She has shared the CICU waiting room with me, stayed at the hospital with me, helped me hold her baby brother while the nurse.s poked and prodded him. (Even though she HATES blood and drool haha) And even braves all the events with us (Even though there are always clowns.) She learned all about the medical stuff she needed to know (And a lot she didn't)

CHD's don't affect just one person. for every little heart that is born with a CHD there are moms, dads, sisters, brothers, grandparents, friends, and so many others. 

All of these people came out today to support, donate, walk, raise awareness, and enjoy their day with friends. Families they have met along the way who are just like their family now. 

We are all out there trying to do what we can to Save lives!

When we chartered our group in October 2009, I had no idea where it would lead us. We really had 10 people....who made up EVERY.SINGLE.PERSON we knew that knew about CHD's. And finding those 10 people was tough. Now we are a part of this massive "family" of hearts. 

To find out Information on the 3 AWESOME organizations you can go here:

Mended Little Hearts

Mended Little Hearts of Southwestern, PA

The Children's Heart Foundation

The Adult Congenital Heart Association

and a few others from today that you might be interested in! 

Our super great friend Danielle over at Jameson's Army

and

Zachary's Mission

Three years in Holland

Three Years in Holland.....Life is Good

Three years ago today, if you had ask me where my life was going I would have said Italy. Pregnant with my 3rd child. Papa Baer and I were excited and ready for our new trip. I was working full time, taking care of brother baer and basically just living life. No where important to go. Nothing really special to do. Just daily routine life with children, a home, jobs, and bills. I never gave a second thought to anything but the ordinary. And then came the landing....

St. Patricks Day 2009.

Trenton was born on St Patricks Day morning. Amazing and perfect. I heard the delivery room nurse talking to the doctor.... Physical markers for Trisomy 21. What?...I'm waiting. The doctor tells me they "believe" he has Down Syndrome. Well, I think to myself. You must be wrong. He's perfect. I'm searching his face. Looking at him. Trying to figure out if I see it. Do I? I don't know. Are they just being cautious? Why are they saying these things. I don't see it.

Looking back, I'm not sure what I was thinking I was going to see. Other then an amazing little baby. But whatever it was I didn't see it. I spent the next few hours loving him and holding him and looking at him. So beautiful, so innocent. So amazing. How could this Down Syndrome thing be true? He didn't look defective...or strange. And certainly not like a child with Down Syndrome. Psst...They are probably wrong.

Then came the Dr to tell me they were taking him for a "quick look" at his heart. Children with Down syndrome have a 50% chance of a heart defect. So, they wanted to "rule it out" Well...I think, if you must, but first off he doesn't have Down Syndrome, and so it's just plain old silly, but go ahead.

1 hour passes...then 2....then 3...We are starting to get worried. Why aren't they bringing back my baby? Then 4 hours...After asking numerous nurses, Papa Baer goes to investigate. Then 5 hours...They won't let him see him, or tell him anything. NOW I'm getting mad.

Then comes the final blow...

The Cardiologist from Children's comes in. He starts talking and my head starts spinning...I remember my sister taking Brother Baer out. That's about all I remember. Other then real pain. Pain in my heart. Pain in my head. I can't wrap my head around what he is saying. I can't remember the defect. I can't pronounce the defect. Oh lord, I think....this can't be happening. He asks if I have any questions? Oh God I think, I didn't even understand what you told me, how can I ask questions. Open Heart Surgery? Is there another way? (Knowing the answer) No, there's not. No way except STRAIGHT DOWN THE MIDDLE OF HELL I'm thinking.

And then he left. And here we were. With a tiny, perfect little baby in our eyes. With a world of problems in other peoples eyes.

So, I cried. I cried and cried till I couldn't cry anymore. I was sorry, I was scared and I was full of guilt. What had I done wrong? What did I do to deserve this? And how on earth was I ever going to get through it?

Looking at that tiny little perfect prince in my arms. All I could think of was whatever it takes, whatever we have to do, we will do it. Whatever he needs we will do. Just please God don't take him away from me.

And so Papa Baer and I found ourselves right smack dab in the middle of Holland. Without a map, without knowing the language. Without the smallest clue of what this strange land had in store for us.

Settling in....

As time went on we started to settle in in Holland. It was an ok place. not too different I'm thinking. A little extra Dr appts and some new friends to meet. But...we can manage. Are people staring at me I think on occasion? Do I fit in here? With these "other" people? All my friends are back in Italy.

Then people started showing us around. :) Like spectacular tour guides they came from all around. Who knew Holland had so many people? Hmm....I had no idea. And they are all so nice...and happy? How are they so happy? What's their secret? Are they in denial? Are they lying to me? Why the happiness? But each time I saw their faces I would immediately feel at ease. Each time they spoke of happiness I felt better.

Living here in Holland the past 3 years hasn't been easy. But, from the talks of my friends in Italy, it's not always a Rose Garden there either. I guess you never know what to expect from this journey, regardless of where you live. Somedays are great. Some days aren't. But in reality Holland isn't that much different. We have an awesome place here. I wish more people would visit us. See the sights. Enjoy their time. Life may be slower here, but it's filled with unconditional love.

I'm sometimes jealous of my Italian friends. But I'm happy. Believe it or not life is good. I wouldn't change my journey or my landing in this strange place. I was thinking last night how far we had come. How far we had to go. How everyday is a reminder that life isn't about the destination but about the journey.

Little Baer is the sunshine of my life. His smile is infectious. He can light up a room with that amazing smile and laugh like no one I have ever seen. His hugs are the greatest. He finds beauty in things that others would skip over and ignore. This land called Holland has made me a better mother. Has made my children better individuals and better siblings. Has made Papa Baer a better father. Little Baer changed the course of our lives in astounding ways. Nothing can ever change the fact that we came to Holland on this unexpected trip. But nothing would ever make me want to go back.

Christmas Morning

Christmas morning, 1979.
I was 9 years old. This day, this moment in childhood sticks out in my mind almost more than any other event in 40 years. My mom had worked so hard on this day. It wasn’t a glitzy elaborate event. Handmade ornaments were hanging from Christmas tree, surrounded by multi colored glow from the lights. Handmade garland made from cut outs of fabric, sewn together and stuffed, then strung together perfectly was hanging from the ceiling between the living room/ dining room areas in our base housing at Camp Pendleton, California. My mom, my sister, and my step dad lived in a modest 2 bedroom home there. As most military families we were not wealthy or even well off. My parents struggled to pay the bills and to provide for our family. But, at 9, not of that was even apparent to me. I walked out into the living room from my room to see what Santa had left me. I was wearing pajamas made for me by my grandma back east. The excitement was caught in a picture at the very moment I saw the presents.
I received 4 gifts that year. An Andy Gibb poster, an Andy Gibb puzzle and the two things that were the pivotal weapons to groom me into the person I am today. A Gerber Baby Doll that my mom had saved Gerber labels from my baby sister’s baby food and mailed in and received for free. She was dressed in a white gown, hand sewn, her eyes closed when you laid her down and she was beautiful. I loved her. She was mine to love forever. The other item was a handmade cradle for my baby that my step dad had crafted and my mom had painted white. In the cradle was a pink bedding set. The blanket and pillow were also handmade for me by my mom. It was the greatest Christmas ever. I cannot tell you many details about other years. But this Christmas….it was different.
Why this Christmas stood out in my mind didn’t become clear to me until much later. You see, all I ever wanted to be was a mom. That’s it. I never as a child inspired to be a doctor or a lawyer or anything other than a mom. I was to have 2 boys and 2 girls. They would all be beautiful and perfect. I would dress them in expensive clothing and match them to each other. Dresses for the girls, adorable pant suits for the boys. They would be smothered in love every moment of everyday. I would lavish them with everything they ever dreamed of having. I was going to marry an amazing handsome man, maybe a doctor, or maybe a prince, and would spend my life caring for my family. We would be the envy of the suburban neighborhood we were going to live in. We would go to church of course, every Sunday in our Sunday best. And I would chat with the other moms about all the amazing things my children were doing this week. And we would watch the children laugh and play together. Then we would go to grandma’s house for our Sunday dinner and the cousins would all play together for the afternoon. During the week I, of course, would volunteer for charities. Giving back would always be important. Maybe saving animals or the homeless would be my calling. That would be my life. An important one, a fabulous one. A mother, a wife, a volunteer, making a difference in the world. That would be me.
Two lessons came from that day. One, was there was no such thing as Santa Claus (well….I saw my mom in the mall at Spencer’s gifts buying that Andy Gibb puzzle before Christmas and it came from Santa DUH!) The second lesson was that dreams do come true.
Although I must confess that God answers prayers in his way and on his time. This life I lead 29 years later. The life of a mother, of a wife, and of a volunteer is not anywhere close to being that princess perfect life I dreamed of. You see my dreams never had words like Atriaventricular Septal Defect, Bicuspid Aortic Valve, Congenital Heart Defects, Down Syndrome, Autism, Mood Disorder, Oppositional Defiance Disorder, or Expressive Language Disorder. My dreams never had me spending nights in a hospital standing a vigilant guard by my child’s bedside. Watching the monitors and praying for sleep and no PVC’s. Nor did my dreams have me spending my days learning about chest tubes and Pacemaker wires. I also didn’t dream the 10 therapy appointments a week that we attend. The multiple Autistic meltdowns of epic proportions weren’t on the agenda either. None of these things were in my planning when I planned out my life but alas here we are....Here I am. A few other things weren’t on my list of dreams either. But through it all one thing remains true. God does not call on the equipped. He equips those who he calls. And God is the one who makes the choices for me in my life. I am simply here, doing God's work. Blessed to be the one he has called and equipped for this journey. I love my family and my life. And those beauitful babies that God has sent me!