Dear CHD, I Hate You.

"I hate you CHD."  There, I said it.    

CHD has taken more from me than I cared to give.  Naturally, I think you can understand.

Three letters, when I see them I can't help but feel resentment and digsust.  It's been 5 years and yes, I'm still bitter.  CHD is the reason my little girl is no longer here.  It's the reason that we as a family have Sunday cemetery visits, family photos that include a framed picture of a missing little girl and an annual Birthday party without a guest of honor.  I may always be a pissed off mom when it comes to CHD.  The highs and lows that the past 5 years have brought have been nothing short of unpredictable, trying and yet at moments filled with pure and utter JOY.  I know the joy part might throw you off but I have to explain so you don't think that I've absolutely lost it.

CHD has taken one of THE most important things from me that could ever be taken.  My child.  When you have to bury your child what follows is a total living nightmare.  I really can't explain it to you but if you've ever had the unfortunate experience yourself then you understand.  It's like time stands still, Heaven and Hell collide and you're stuck in this place where Faith and Fury completely fight for control of your heart and soul.  You're sad, looking for answers, angry, desperate for relief from the ache in your heart and confused as to why God could do this to you.  You question your Faith, your reason to live and then in the midst of it all it's like you go completely numb because your mind and body can't continue handling the waves of grief it has been receiving. 

5 years in, I can tell you you will always miss your child and sometimes all of those feelings from the day they left, they come rushing back.  Let them.  You will be able to breathe again, you will be able to smile again even if through tears.  Our children aren't meant to leave us first.  Time passes no matter how hard we will it not to and the feelings start to change and in my case, I had to funnel that anger and grief into something tangible that made me feel like I hadn't lost my little girl entirely.  I had to hang on to her.  (I promise, the JOY part is coming.)  And so I advocated.

As much as I hate CHD though (the JOY part comes in here) I owe my healing to it.  For 5 years I have prayed, cheered, cried, grieved, championed and advocated for some of the most brave, determined and courageous children I've ever known.  The heart community, truly saved me.  The one thing that nearly tore me and my family apart, brought me back to life.  While I am bitter that my baby isn't here, I am overjoyed when YOURS does well.  My heart is truly full to know these kiddos and to see the extraordinary things they are capable of.  I have been blessed to witness the true fight of a champion, of a WARRIOR!  I've cried when you've cried, I've been blessed enough to be in that waiting room and I have THE BEST friends I could ever have asked for.  These are the GIFTS that CHD has given to me.  While I'd trade them for one more minute with my daughter, I cherish these gifts because that trade, isn't possible.  I think my daughter knew I'd need it.  I see how tired all of you mom's are.  I know that you would all trade CHD away if you could, I know you would take your child's pain, endless procedures, pokes and prods.  I know the hospital stays are so hard on you and your family and I know that sometimes you feel completely alone, discouraged, frustrated and downright angry.  Don't give up.  CHD gets its butt kicked from mom's like you, like us and from kids like OURS.

Each year, February 7th - 14th we emphasize CHD Awareness.  Ok, the whole month of February.  We post fervently including facts, statistics, personal stories and our family struggles in the hopes that others will see the challenges CHD has presented for our children, for our family.  We hope that it moves them to be more "CHD aware" to know what to look for when they or someone they love is expecting or to donate towards research.  What people don't see because other than a scar it isn't visible to the eye is the HOPE heart mom's carry and the FIGHT these kids have inside them.  Rock That Scar.  Post.  Advocate.  Tell your child's story.  CHD has a group of determined heart mama's with some crazy strong kids in tow, so look out.  I won't stop raising awareness and not just during this special heart week.  I won't stop because my daughter deserves an advocate, she deserves her mom and CHD doesn't get to take that from me.

The Only Thing That's Missing...Is You.

Dear Sweet Sophia,

This Summer has been such a crazy time for us.  Your first annual Help Us, Help Hearts event went better than we could have possibly imagined.  We have such great family and friends and they all showed up to show us how much they love you.  It is still overwhelming to think of the people who know you, but have never met you that are willing to go the extra mile for you.  We are so thankful for that.  Our hearts are so full of love for your supporters and because of you we have learned the true meaning of giving.

Summer is always a difficult time for us.  I still remember so vividly the day we came home from Cleveland without you.  It was so warm out.  I hadn't been outside really in almost 2 weeks and I remember that we had the car windows open.  As we got on the expressway your Daddy went to roll the windows up and I told him to leave them down.  I closed my eyes and put my head back against the seat and let the warm Summer air hit my face.  You were gone and my heart was so heavy but the air felt so good all around me, it was comforting somehow.  When the warm Summer air blows to this day, I love the way it feels.  It's as if somehow it's you, giving us a warm hug to let us know that you are alright.  I still close my eyes sometimes and think of you the way that I did that day.  Swaddled so tightly and smelling like my little girl the last time I held you.

Your brother will be 6 in just a couple of weeks.  I can't believe how the time has passed.  It makes me sad to think he and Maryn are growing up without you.  He told Daddy the other night that he just wants you for his Birthday.  He would be willing to give up his Lego sets and Pokemon cards if you could just come home.  I smiled at his gesture because he has such a caring and kind heart and then we struggled to make him understand that we would give him anything he wanted but just couldn't make that happen.  He wanted to be your big brother in the worst kind of way.

Your sister is still a quiet soul.  She is growing up right before our eyes into the most beautiful young lady.  You looked so much like her when you were born and we often catch glimpses of you in her smile and laugh.  She is so helpful and caring, always doting on your little cousins and we can see what an amazing sister she would have been.  She sings to you each time we visit on Sunday and even made you your very own song.  I hope you hear her sweet voice when she sings it before your headstone on our visits each and every Sunday.  She tends to your flowers and picks out the weeds each week and gets very annoyed with Anthony when he tries to copy her song to you, it has now become a little bit of a joke.  We make sure each week that Maryn sings first.

Tonight, Maryn stayed up a little later.  Anthony fell asleep in your chair and she asked to stay up to watch Beauty and the Beast.  After getting approval to stay up she emerged from her room with her Belle dress on and danced with each song in the living room.  She asked Daddy to dance when Tale as Old as Time played and in that moment I pictured what you would have looked like in that dress taking turns with Maryn, dancing with Daddy.  My heart broke.  There are so many moments when I wish so badly you were here.  To hear you giggle and smile as you would twirl and dance in your "Belle" dress like your sister, I would give anything.  It's so unpredictable, our grief over losing you.  It can be a woman at the checkout making faces at her baby in a car seat, a mother's voice calling her daughter who coincidentally is also named Sophia, a song, a smell, a warm Summer breeze.  Your memory strikes me at the oddest times making my spine stiffen and my eyes well up with tears.  The one thing you must know is, you are so greatly missed, each and every day.  A day will not pass without you entering our minds.  You were a part of this family and will always be.  We will do our best to share your life and the amazing impact you left on ours.  We thank God for you but miss you like crazy.

Love,

Mommy

Help Us, Help Hearts...

It has taken some time to get here but FINALLY!!!  We are able to announce our Help Us, Help Hearts Charity Event.  After a couple of months planning, meeting with the Clinic and getting this website complete, we are ready and so excited to raise money for the little heroes at The Cleveland Clinic Children's Hospital waiting for their transplants.  Something you should know about these heart kiddos; they actually have more heart than anyone you will ever meet :)  Innocent kids that are braver than they should have to be but still manage to smile.  We should all take a cue from these courageous kids!  Their parents have a different struggle.  One where the worries as a parent take their toll but they put on a brave face for their child.  We have been so privileged to get to know some of them and can tell you they are also the inspiration behind what we are doing because we have been where they are and know the worry, fear and desperation all too well.

There is so much hope at The Cleveland Clinic Children's Hospital.  Caring Physicians and staff that are dedicated to saving lives.  Dedicated to fixing or replacing hearts, giving the pediatric patients of Cleveland Children's a chance at life, these kids have so much to offer this world!   People have asked Tony and I why we are doing this, because our daughter died.  At the end of the day we know that Cleveland Children's did all they could to save our daughter.  We were inspired by them and what they do for families and other patients.  They recognized that Sophie was a champion, a fighter, a little girl - OUR little girl and gave us respect and dignity when it was time to say goodbye.  They fought for her.  It makes my heart swell with pride that we were led to do this for Cleveland Children's because of our beautiful baby girl, Sophie.  As hard as it is to live each day without her, I know that her life is making a difference for so many kids, so many families like ours.  As her parents we will make sure that Sophie leaves her mark on this world in a way that can truly impact heart patients and their families.  We plan to raise awareness and to make sure these little heroes are heard.  Thank you so much for being a part of what we are doing!  We hope to see you on June 2nd!

Details for our upcoming event can be found here.