mother’s day 2009:  my first mother’s day with faithy.  she was 8 months old, doing great, and it was a perfect day.
mother’s day 2010:  faith was playful and healthy and happy and amazing.  may to october faith was at the height of her life.
mother’s day 2011:  my little girl is dead.  i’m a mother without a child.  what a horrible, horrible day.
mother’s day 2012:  the sun shines in our world again, hope amazes us in every way.

we had a fantastic day celebrating with our little princess at the Yankee game (even though they lost) but such a huge part of our lives is missing.  Faithy girl, our lives are not the same without you.  It is not my first mother’s day.  that honor belongs to you.  you made me a mommy and your mommy i will always be.
i am the luckiest momma in the world to have held you, loved you, called you mine. you and your sister are my everything, i love you both so much.

Posted: May 14th, 2012 under Uncategorized.
Comments: 1

In memory of Faith, we let some balloons for Easter.  We do this every holiday, but this time, all the balloons didn’t get stuck in a tree.  Its an impressive feat, one that should be celebrated.

Posted: April 13th, 2012 under Uncategorized.
Comments: none

Faith had a boyfriend named Matthew who has Hypoplastic Right Heart Syndrome (HRHS).  Faith had Hypoplastic Left Heart Syndrome (HLHS) so between the two of them, they had a whole heart.  Matthew’s mom, Marie, and I had great plans about Matthew and Faith’s Valentine’s Day, Heart themed wedding.  Matthew was a great walker, Faith was a great talker.  He was the ying to her yang, her soul mate.  When Faith died, Marie came and cried with me not only over the loss of my little girl but the loss of our mutual dream.

Children are not supposed to die but when they do, people handle it differently.  Some people become advocates for whatever monster took their child away to make sure it doesn’t happen again, other people can’t get passed their own broken heart to advocate, no matter how much they believe in it.  For me, I can’t bring myself to fight against the CHD monster.  My child is dead.  This is why.  My broken heart can’t fight for other children no matter how much I want to, no matter how much I believe in the cause.

But someone has to fight for future CHD babies and, in my world, that someone was Matthew’s mom.  Faith’s death hit home for Marie and whereas I couldn’t see past my own wounds, Marie felt the need to get PulseOx Screening mandated in our state.  She went on a crusade to get Faith and Matthew’s Law passed, requiring PulseOx screening for all newborns.  Approximately half of CHDs are not caught at birth, leading to potentially devastating results.  PulseOx Screening is a simple, non invasive test that would allow medical professionals to know if a child has a lower than normal blood oxygen level which would allow them to get treatment right away if needed.

Today, Marie and Matthew as well as Billy, myself and Hope (and a picture of Faith of course) went to our state capital to testify on the importance of this life saving procedure.  What an experience!  What an honor to both Faith and Matthew.  It was a little nerve wracking to get in front of the legislative council, I’ve never wanted to jump out of a seat faster!  I did it.  WE did it.  The PulseOx bill was met with overwhelming support by the legislative council.  We don’t know yet if this bill has passed but I really can’t see it not.  What a huge step towards protecting newborns and saving lives.

Marie, I am so incredibly proud of you and I know Faith is smiling down on all the amazing work you’ve done in her name.  I am so lucky to have you as a friend.  Thank you for advocating for our children when my heart is too broken to do it.  You are an amazing woman and both Faith and I (and Hope and Billy too) are forever indebted to you.  I cannot wait to see this bill become a law.

Posted: March 7th, 2012 under Uncategorized.
Comments: 1

Faith took forever to meet milestones.  She didn’t sit up until she was 9 months old, didn’t crawl until a year, didn’t roll both ways until a year, never got passed the “new walker” stage.  Hope on the other hand…is ahead of the game.  She rolled at 2 months, sat up at 5 and now, at just over 8 months, my little princess is crawling.  We’ve waited so long for this. Faith was a miracle in every way but we missed being able to celebrate these normal milestones and now, we celebrate these accomplishments with Hope.  She crawls just like her sister, one leg out to the side, kind of dragging behind, like a wounded soldier.  She’s got a big grin on her face when she does it, like this whole moving thing. We have a video of Faith when she first started walking and she’s got that same determined grin on her face, that same look of pride and accomplishment.  Hope shares her sister’s self pride and smile.  Hope truly is Faith’s little sister.Now to get my house child proof….Hope has already found about a hundred dustbunnies I didnt’ know we had and tried to eat them.  Nothing makes you feel worse about your cleaning skills then a baby :):):).

Posted: February 27th, 2012 under Uncategorized.
Comments: none

Faith is ALWAYS on my mind. Not a second goes by that I am not thinking of her and missing her and wishing she was here. But sometimes, Faith REALLY makes sure we remember her. Today is one of those days.

It started out this morning when I decided to take Hope to story time at the library. I used to take Faith every week and she loved it. It’s a 45 minute program of singing and stories and she would stand in place and sway back and forth — Faithy’s version of dancing. Before the program starts, thy used to have a bucket of books to read in the middle of the floor. Faith would, in her slow and careful way, walk to the bucket, get a book and slowly come back for me to read it with a big smile on her face. It would take her forever to make the trip and often times by the time she actually got to me it was time for the program to start and we wouldn’t ever get to read the story. When Faith died, the librarians came to her wake and her funeral, brought cookies, and, as a way to honor her, had a brick made in her memory. The library has a whole walkway full of these bricks that you can buy and have personalized with whatever you want and these ladies had decided to honor Faith with one.

Well today, we went to the library to start another adventure of story time and….the library group is on break until February. So that didn’t work out so well….but we decided to go visit our old librarian friends who we haven’t seen in months (I stopped by once before Hope was born). Well, they were soooo excited to meet Hopey, they couldn’t believe how much she looks like her sister and just how happy of a baby she is. Nothing makes a mommy prouder than when her baby is so easy going and smiley and happy to be held by anyone and just eating up all the love and attention. So we chatted for a while and they got their baby snuggles in and then called to find out about Faith’s brick. Well, it’s FINALLY in! Woo hoo! The librarian went out and found out where the brick was and took Hope and me to see it. It’s perfect. It says “in honor of Faith, a small girl with a big heart”. Could it be any more perfect????

So there I am, bawling my eyes out but so incredibly full of pride. My little warrior, changing the world. My little rockstar who will never be forgotten. Then I go home and check the mail. And what do we get? A letter from Boston Children’s Hospital thanking us for our toy donations in Faith’s memory. And the date on the letter? December 22, 2011. Amazing timing. It means the world to me that on a day that is forever Faithy’s, the hospital was thinking of her and honoring her as well. Amazing. And then I start bawling my eyes out AGAIN. And again, I am filled with overwhelming pride. My little angel, changing the world.

Think that’s enough? Not for my Faithy! My sister calls and asks me if I’ve read Faith’s guestbook on the blog here in a while. I’ve been working alot and just been overwhelmed with life and Hope and the holidays and all and haven’t really been on here but I THOUGHT I was up to date. Yeah, not so much. In the guestbook is a beautiful story by someone who received one of Faith’s toy drive donations. Debbie, thank you for sharing your story with me. I am sure you’re right, Faith is up watching over and taking good care of Jamie. Please update on her sugery, your family will be in our thoughts and prayers. As a mother of an angel, the most important thing for me is that people remember Faith. The toys from CHB meant the world to Faith, it made a really crappy situation….well…not so crappy. She loved going and picking out her prize and collecting her balloons. Your story makes Faith’s legacy live on. Thank you for that.

I’ve heard from other people at CHB that they have received a Faithy donation and each time I hear it, my heart swells with joy and pride. THIS is what Faith is all about. THIS is how I want my little girl to be remembered. That’s my Faithy, changing the world, one person at a time. If you have received a Faithy gift, please let me know. Nothing makes me happier.

Thank you Faithy for these unexpected signs. Your mommy loves you so much and will never forget you. Thank you for being you and for making this world and the next a better place. Heaven is surely brighter with you there. I love you baby girl. Now, always and forever.

Posted: January 11th, 2012 under Uncategorized.
Comments: 1

It’s been a year s.ince you had to go and we still miss you just as much as we did the day you left us. Last night I started having horrible flashbacks of last year…our night in the ER….your increasing puffiness….the repeated calls I made for help with no answers….that horrible car ride….the walk to the office….you turning blue and stopping breathing….your little soul leaving your body….the ambulance ride, the hospital…..loosing you. It all keeps coming back, flooding me  and threatening to suck me under into a sea of depression. I won’t let CHD win again and bring me down. I’m going to remain strong and positive and not go back there. Today, we remember. Today we ckebrate who you are and were. We watched your videos and talked about you and loved you. Today we lit candles and listened to songs that remind us of you and sent you balloons and laughed about you. Today we honored you. And we hope you’re proud. We love you Faith and miss you and will never forget you. Thank you for being ours.

Posted: December 23rd, 2011 under Uncategorized.
Comments: 1

Please wear PINK on December 22 to mark Faithy’s first angelversary.  If possible, please also send her some balloons, she really loved balloons!

Posted: December 15th, 2011 under Uncategorized.
Comments: 4

My Sweet Faithy,

One week to go and you’re gone an entire year.  I miss you just as much as I did a year ago.  It feels like an eternity and a split second that you’ve been gone.  The world keeps spinning, people get older, things change but yet, I still feel like you were here yesterday. Faithy girl, mommy misses you so much.  I am not ready for next week. I am not ready to say you’ve been gone over a year.  I am not ready for you to be gone at all.  A part of me still wishes I’ll wake up and you’ll be in the family room playing with your baby sister, teaching her how to make silly faces.  I can’t even imagine what you’d be like anymore.  Would you be walking the way you were so close to doing last summer?  Or would you still insist on being carried like you did right before we lost you?

A year ago this week, you were puffy and not sleeping well but you were still smiling and talking.  You would wake up in the middle of the night and want a drink but go right back to sleep.  How could we have not done anything?  How could that stupid hospital the night before we lost you tell me there was nothing wrong and to give you Maalox?  How could I have listened to them?

I can’t believe a year is almost here.  I have no idea what to do with myself next week when your first angelversary comes around.  How the heck am I supposed to mark this horrible day?  Last year on that day before everything went so wrong, I was out running errands and Grammy was babysitting you.  I renewed my license the day you died, what a horrible reminder of the worst day of my life.  This year, “Aunt” Suzanne is coming and we are going to send you balloons with the family.  We all miss you so much, beautiful girl.  You are just as much of our family today as you were last year and you always will be.

Mommy loves you sweet girl, please take care of all of us who loved you and continue to love you as we embark on the worst milestone any parent ever can reach.  We love you, have fun cloud hoping and don’t forget to watch Dora — I’m pretty sure the Dora Christmas Movie that you loved so much is on :).

Love,

Mommy

Posted: December 15th, 2011 under Uncategorized.
Comments: 1

Tomorrow I am making my second trip to Boston Children’s Hospital since losing Faith last December.  It’s bitter sweet for me, I am still adjusting to not having regular hospital visits as part of my life but I am so proud of the success of our toy drive in Faith’s memory.  As of now we have labeled and bagged 234 toys to donate to the children’s hospital tomorrow in honor of our little miracle girl.  When we set out to do this toy drive, I was hoping for 150 toys but would have been happy with 20.  It blows my mind how wide spread Faith’s reach truly is.  She was and always will be magical.

Thank you for loving our little girl and for keeping her memory alive.  We are once again overwhelmed with gratitude for the love and affection you gave to our little girl before she was here, while she lived on Earth and now that she flies with the angels.  We will never understand why this happened to us but the love of our friends and family is truly the silverlining in a perfectly impossible situation.

Faithy girl, please bring peace and strength to us tomorrow as we visit a place with so many memories for us, both good and bad.  But ultimately it is a place that gave us a year longer than anyone ever thought we’d get.  Faith, you are and always will be a fighter and we wouldn’t trade you for the world.  Keep up the good work protecting us all.  Mommy needs you more now than ever.  Please give us the strength to make it through the next couple weeks and figure out how the next piece of this crazy puzzle should fit.

We love you Faith!

Posted: December 1st, 2011 under Uncategorized.
Comments: none

I used to say “I’m the luckiest girl in the world” and mean it.  I had an amazing family, friends who keep me laughing, and a little girl who just amazed me more and more every day.  Now I have the same things but something is missing, SOMEONE is missing and it’s hard to consider yourself lucky when the most unlucky thing in the world happens to you.  But I am lucky.  And I am thankful.  Thankful for my family and my friends who continue to love and support me no matter how crazy I may get.  Lucky that they don’t push me out of the car and leave me as I learn to ride this crazy grief roller coaster life.

I am forever thankful for the time we had with Faith and wouldn’t trade her for all the healthy babies in the world.  She made me who I am, she taught me how to be a mommy, how to love unconditionally and to take time for the snuggles.  I am so lucky God chose me to be her mommy and even knowing how it all ends, I would do it all again to be with her.  I have no regrets with Faith (or at least minimal regrets).  I just wish my luck had run longer (like a lifetime’s worth longer) and that my little troublemaker was still here.

But then….she is still here,  She’s here in our memories and in our hearts.  One of my best friend’s four year old said to her the other day that she was tired of Faithy being an angel and wanted her to come back and play.  Me too, me too.  There is not much I wouldn’t do to make that happen.  Faith changed the world and the world is better for having had her here.  It amazes me when people tell me Faith visited them or their children or that they saw something and it reminded them of my little girl.  How lucky am I to have had been the mother to this little girl with the infectious smile and charming personality.

My life is and always will be missing a huge part.  I will never understand why my little girl had to go, why she couldn’t be one of the survivors, why she couldn’t live to be 100 the way I always said she would.  I don’t understand why other people’s children overcome seemingly bigger mountains or are given a second change at life and for my Faithy, in a blink of an eye we went from playing and snuggling to her leaving me with no warning.  God I miss her.

This Thanksgiving, I am so very thankful and so very lucky.  Thankful and lucky to have a new baby who, much like her sister, can light up a room with her smile and laughter.  Hope is such an amazing little girl, always giggling and drooling and talking away.  She’s so grown up already!  At 5 months old, Hope wants to move.  She snuggles but not like her sister did and you know what?  I’m thankful for that too.  She thinks she can crawl, she thinks she can sit, she thinks she can eat big girl food and as much as I want her to stay my little baby forever, I am so thankful and lucky to watch her thrive.  Faith was a baby for so long, Hope already is trying to leave her baby-ness behind and here I am, loving every minute of it.

I hope this Thanksgiving is gentle to all of you.  I look forward to watching my little turkey thrive and take in the world around her while remembering the one who came before her.  I love both of my girls and wouldn’t be me without them.  The next few weeks are not easy for me to think about but I am grateful have loved and to continue to love.  After all, I truly am the luckiest girl in the world.

Posted: November 23rd, 2011 under Uncategorized.
Comments: none