Tuesday, August 10, 2010

A Million Things To Say...Everyone wants to know....Miss you Little Lady

So....I am not even sure where to begin. I have been asked several times over the past few weeks if I was going to "talk" about what happened on that sad Sunday. So here goes....We woke up that morning like any other day. She was sitting in her bouncy...playing I might add. She was actually okay the entire weekend. I had been on the phone with all of her doctors in the past week...discussing the Glenn and her reflux situation. They all told me I seemed a bit anxious and she continues thriving so let it be. On Friday, they had changed her formula to Elecare, which is a prescription to see if it would help in the healing of the esophagus from the terrible reflux. It's strange because in the week before her death I kept telling ray that we could not let her sleep through the night that she had to eat. Ray kept insisting that I not bother her and to let her get her rest.
So back to Sunday....She looked okay and I went to change her pee-pee diaper and she started to cry, well she sort of had a raw diaper rash from the new formula that was causing her to have diarrhea. So I did not think anything of it. She cried maybe 2 minutes and then stopped but I noticed she was a bit grayish and she looked terribly weak in that instant. I called for ray and told him that I wanted to bring her in just to be safe. No crazy breathing ...NO NOTHING!!!

We got to the hospital and there was really no rush. They basically took their time registering us and doing the normal routine...Sat's ( that were 86) weight and height. They were walking us down the hall to the kids ER and she was up on my shoulder kicking around. We got into the room I flipped her to the cradle hold, she looked at me and coded. I screamed for the nurse and just then the doctor made the corner. They tried to resuscitate her but were unable to do so. A regular and cardiac autopsy is being performed.

So there it is. I hate to replay those events in my head. In fact, I cannot even remember the funeral...that horrible experience is the last vision that I keep playing over and over. I just cannot believe that for doing GREAT one day it is all gone. In that moment I felt so helpless. I am sure you have no idea what I am saying and all you can do is say "I feel terrible" but the truth is No one should have to endure the pain of loosing a child. I guess some people never know what to say and they always end up saying the wrong things.

"you should be thankful you have Madden", okay well she was my child too. "Luckily she was a baby and you did not have to bury your five year old", okay but that still does not make it easy.
There are so many more that I could say but it does not make a difference. It does not make me any happier to release the pain.

Everywhere you go there is always a reminder. In Madden...every time I look at him I see her. God I miss her. All of the stages of grieving hit me all at once. I get so angry to sit here and watch my 3 year old cry and ask us why we gave her away...there is no easy explanation. He does not understand..in fact I do not understand. I can still hear her cry, see her laugh. It is just hard. It seems that every time I see a baby girl around her age it tugs my heart. I know they say it is not supposed to be easy but there is no words to even begin to explain.

For the 87 days she was here she was my everything. My hope, My dreams, my inspiration and strength to go on. I would continue going every night on no sleep if I had to. She taught me so many things about life. Life is so short for fighting and selfishness. It is hard to imagine in that moment that God already had a plan from the time she was conceived. I hate that plan but maybe in time I will See why. I just think about who she could have become and who she really looked like. It is all just gone in the blink of an eye.

I am very proud of the things I have done and the awareness that has been raised for congenital heart defects. She came into this world with me and left with me. As the priest said during her service, "Ray and Jennifer are not angel makers, they are Saint makers. Mia Grace touched more lives in 87 days than many touch in 87 years. For in my eyes she is a Saint. She brought together a community and taught many about hypoplastic left heart syndrome and the importance of congenital heart defects. In my eyes she is a saint."

It makes me incredibly happy to hear him say that but my heart is broken and I want her back. There needs to be more hearts like Mia's to bring awareness in this word and help people to realize they should live for today and HOPE for tomorrow.

We miss her so much it hurts but hopefully in time the hurt will heal and we can understand. Ray and I are going to keep the Mia Marrone Heart Foundation open and do an annual fundraiser for parents who's children have congenital heart defects and need assistance. I feel this is what she would have wanted. I plan to change the blog up a bit and discuss events with the heart foundation and to talk about grief and living through this complex journey.

We have had so many messages, cards, phone calls and we are happy to see how many people have reached out in support for us. It means so very much. We just need time. Time to cry, time to grieve, time for our other 2 wonderful kids, time for one another.

The funeral and burial were so nice, if that is even crazy to say. She looked so beautiful. You just never think you are gonna end up in an office at 30 years old buying a family tomb.

So in darkness there is light and it makes me happy that I was even able to have her for 87 days. I just wish I had her for a lifetime. It was always in the back of my mind that things could go wrong, as with any CHD child but I never thought it would be me. Guess no one ever does.

I just hope she knows how much we love her and miss her. It makes me proud to be able to show Cole and Madden how much of a hero and an inspiration their sister was. It brings tears to my eyes that I know this will be the last blog entry about her. It also makes me sad how quickly everyone will forget her. Not me....never. I have to tell you that I have gotten so many e-mails and messages telling me how I was an inspiration to them and they were so proud of the journey I decided to create for Mia but in retrospect...what parent would not have. The decisions I made were what any courageous mother would do for their child.

I miss your smell and your sweet smile in the mornings and the way you and Madden laughed at each other. But mostly, I miss who you were and I know you could have done great things for the heart community and the wonderful compassion I know you would have shown others for just simply being alive. Mia Grace I promise to keep your legacy alive and take care of others through your foundation. I am even going to try to get a job with LOPA because I value the importance of organ donation. Without you I would have never known. You have opened my eyes to a whole new world, one with a lot more compassion and selflessness and I thank you my love. It is so strange how the greatest song can turn terribly sad in an instant. I think of you everytime I hear Temporary Home.

So with a heavy heart and my closing entry about Mia...I love you baby girl and I miss you dearly I know your doing big things in heaven. Take care of all of your heart buddies and keep them free from hurt. We love you so much...Mommy, Daddy, Cole and Madden.


  1. I'm so sorry. About what people say... I went thru a very bad accident recently and people "at leasted" me constantly. at least it wasn't worse, at least you were alone, at least at least at least. I googled compassion, and one of the first hits talked about how saying "at least" and the other things you mention are not at all compassionate and leave the listener actually FEELING WORSE. It minimizes your experience and makes you feel as if you do not have the right to feel the way you feel. So know that people who say these things haven't a clue about true compassion. Please know that that is THEIR weakness and that YOU have absolutely every right to feel exactly as you do. And please don't make this the last post about Mia. Please write about her again, as you remember different things about her. We want to hear about Mia forever more.

  2. I am so sorry about the loss of your beautiful baby girl. Praying for you all to find peace in your devastating loss one day. Thank you for sharing your story.
    Heart hugs,
    Jenny (mom to Aly- HLHS)

  3. Wow! That was an amazing blog that must have been so hard to write. I cannot imagine the pain that ya'll are going through. It breaks my heart to think of all the children that are so sick from the moment they are conceived. Meeting you and hearing this story has opened my eyes to the fact that every single second counts. Thank you so much for sharing your story. Your family will remain in my prayers.
    ~Susan Hebert

  4. Thank you for sharing your story. My heart is broken for you, Ray, Cole and Madden. You all continue in my prayers. We've met far to many HLHS babies who have become angels seemingly too soon and I will never forget any of them. Please know that Mia won't be forgotten either. She remains a precious reminder of the fragility of life and how we must cherish each moment. May God heal all of your hearts...


  5. Jenn, great job on the blog. I'm sure there was a lot of grief in writing it as there is every time you think of your sweet baby girl. I know words cannot console you and your family, just keep in mind that God makes a special plan for everyone with an important purpose in everyone. Mia's plan was to bring a community together to learn about CHD's-and that is exactly what she did in such a short amount of time. Rest in Peace Mia Grace and fly high with your tiny angel wings. We know your the most beautiful SAINT in heaven!

  6. I am so sorry for your loss.

    Hannah (Mom to Cora, HLHS)

  7. I am so sorry for your loss.

  8. Jenny, Ray, Cole, & Madden....
    Mia will never be forgotten. Sometimes please say the strangest things. May be with the best intentions but it does not come out right at all...
    She has captured the hearts of many peoples hearts. Your blog is beautiful. I cant stop crying.. I wish I could take all the pain away from all of you. Mia is a SAINT with the most beautiful Hot Pink Angel Wings! I <3 u and ur famil and thank u for Mia <3 Hugs!

  9. Beautifully done! Mia is a hero as well as a SAINT! You and Ray are very brave and I thank you for allowing me to follow your journey. I wish peace for your family and I look forward to watching Cole and Madden grow. I love you!!

  10. I have a 2 year old daughter with HLHS and I just want to tell you that us heart moms WILL NEVER forget our heart angels. MIA WON'T EVER BE FORGOTTEN!!!!


  11. Hi Jennifer and Ray- have read your blog and it is really uncanny how similar our stories are -

    I had twin girls on April 7, Kaira and Krisha. Krisha was diagnosed with HLHS in the 20 week scan and although she was in the hospital for almost 2 months, post Norwood, she seemed to be doing quite well after she came home. Just like you we also shifted house during this time. We had her home with us for 3 weeks, but one day out of the blue she passed away, on a Sunday, just 3 days before she turned 3 months. She was perfectly fine one minute and the next she coded, in my arms at home. Tried CPR and rushed her to the hospital but she didn’t make it. We did not want to go in for an autopsy so don’t know exactly what happened. At her funeral I really felt that she looked so beautiful and peaceful, she is on my mind all of the time and I try and replay my time with her, wonder how she would have looked as she grew up, so sad for Kaira not knowing her sister, the list goes on and on. It is so difficult to get back to doing things we usually did, meeting friends, going out – don’t know when or how we will get there. Our babies will be missed and be with us every day of our lives. I wish you and your family lots of courage to get through this and our babies must be together, looking down upon us.

    Take care, Karishma

  12. I just came across your blog searching for the heart necklace in memory of your precious daughter. I am blown away by your journey and this post. My heart aches for you (and the other families that have endured such a loss). I have a 2 month old son that was diagnosed at birth with Tetralogy of Fallot with Pulmonary Atresia. He was taken from Gulfport Memorial to Ochsner in New Orleans where he underwent open heart surgery 12 days later. Little Asher is on the mend now, but has more surgeries to endure. It has been an overwhelming journey, but God has been our strength through it all. I admire your transparency and strength. You are an encouragement and your faith an inspiration. I pray for God's comfort and peace to cover you and your family during this holiday season. May He continue to use Miss Mia's powerful testimony for His glory...
    Many Blessings,
    Anna Griffin

  13. My prayers are with you and your family. I have also lost a son, Chase, to HLHS. He was here for only 107 days. I know what you mean when you say that it makes you a better person. Like you, I am so thankful for the amount of time that God allowed us to spend with Chase. Those moments with him will always be cherished by my husband, myself and our older son. I will be buying one of the necklaces to honor my son and every other child who has this defect. May God be with you and comfort you in the years to come. If there is anything I can help with or if you'd just like to talk, please feel free to send me an e-mail at Lindalou7898@aol.com.
    Linda Weaver

  14. I just got done ordering my necklace and ive been crying all morning with how this all hits home with me. Im 17 years old and i am a teen mom of a baby boy, Tyson, who was born with HLHS. He was born at UCSF on September 19, 2010. This is the hardest thing ive ever had to deal with in my life. Tyson has gone throught the norwood and glen procedures so far. Hes doing really well and seeing stories like yours makes me feel not so alone. Being a parent of a child with life threatening Health problems is one thing, but to be 15 and pregnant hearing the words that my son has severe severe heart disease at 19 weeks pregnant was the most difficult part of my life. to decide to go on with the pregnancy or abort for all the what ifs. i chose to not play god and continue with what i felt my son wanted. I thank God everyday for the miracle he has given me. my heart hurts for you and all the other parents and families that have lost a loved one to HLHS. im now in my senior year of high school and even though i feel so disconnected with the levels of maturity at my school and wiser than most my age, i know god does everything for a reason and he would never throw anything at me that i couldnt handle. and that, is what i was you to believe<3 i love you guys and i love Mia<3 &Everytime i will see my blue heart necklace it will remind me of her and my son. Thank you so much. my email is erinnmack5@yahoo.com i would love to hear back from you and any others that would like to talk.
    -Erin McDaniel