Saturday, November 22, 2014

The Stars Above



Hello again. We are still here and we are healing and moving through the wide range of emotions that still come up on a day to day basis. After 7 years of sharing Mia's story very publicly through this blog, Facebook, and other various social media it was time to take a break. It has now been almost 12 weeks since Mia made her transition and we're starting to emerge from a much needed time of rest and reflection.

Mia's story is far from over and there is more to share, and much more coming. I am beginning to write my first book, and while this first one won't center completely on our life with Mia, her story will certainly be woven throughout. She is my inspiration for the writing and we are both very excited about it! The book is more related to my Health Coaching practice (you can read more about that here), and will be a practical guide to help anyone who is facing challenges in life both big and small, and looking to reclaim the health and happiness that is our birthright. Stay tuned for more info!

In the meantime, there is a very special story to share about Mia's memorial in New York. First, the memorial held at the Queen of the Most Holy Rosary in Bridgehampton was an incredible experience. We were surrounded by friends, new and old, family who had traveled far to be there, and the undeniable presence of Love coming to us from each and every one present. We are honored to have so many gracious and beautiful people in our life.

There were pictures of Mia everywhere, as well as signs Francesca had made for Mia's hospital room when Mia was first born and then taken to the hospital here in Boston. It's hard to capture the full presence of Mia but she was still felt fully!





On the evening of Mia's Memorial in Bridghampton, there was one of the most stunning sunsets that most had ever seen, and on the east end of Long Island that's saying a lot. Our friend Diane captured this beautiful shot of the sky over the water.


The clouds rolled in after that and covered the sky in darkness. With friends and family that had stayed around after the memorial we went down to the beach to light lanterns and send them off in to the sky for Mia. Our dear friends Rachel and Skip brought the lanterns and one by one we sent them into the heavens and to Mia.











As the lanterns made their way higher and higher into the air, the dark cloud covered sky was lit by these little beacons of light. One by one the lanterns disappeared as their fire burnt out, but as each lantern was extinguished they were replaced by stars, as the clouds rolled out and the once dark sky was illuminated by thousands of bright twinkling stars. It was a true gift from Mia. She was right there with us, shining her own light for all to see.

There is so much in our lives to be thankful for. Mia taught us the importance of gratitude and appreciation.  We can easily get bogged down in the details of life but give thanks for this moment, for the experience of love in your life wherever it is and however it shows up. May you all have the happiest of Thanksgivings and we'll be seeing you soon!

Wednesday, September 03, 2014

Memorial for Mia Bella Friday, September 5, 2014



We will be having a celebration of Mia Bella's life this Friday, Sept 5th at her school, which she adored.

Boston College
Campus School
Lynch School of Education
Campion Hall Rm 197
235 Beacon St
Chestnut Hill, MA 02467

The party will begin at 1:00pm and it will be a PARTY! We always said that we wanted to celebrate the life Mia lived when she passed, and make it as happy of an occasion as we could.

We will have food, music, and there will be a time for people to share their feelings and remembrances of Mia Bella's incredible life.


The Campus School is right on Beacon St, but please park in the BC parking garage which is just east of the school on Beacon if you're heading toward Boston.

We are asking if you would like to contribute something to please give a donation to our fund for Mia or please donate to the Campus School. The Campus School is an amazing place, filled with brilliant and caring teachers, therapists, nurses, aides and staff.

Campus School donation info here: Campus School Donation information.






IMPORTANT: If you're using GPS make sure you use Chestnut Hill as the city and NOT Boston.

Please call the Campus School with any questions @ (617) 552-3460

Link to Google Maps BC Campus School



Tuesday, September 02, 2014

Mia Bella Zingarelli February 10, 2007 - September 1, 2014


Mia Bella made her transition last night at around 9pm. She was in her favorite place in the world, her mother's arms.
She went peacefully, and without pain. We watched as she took her last breaths and then she was gone.
I don't have many words right now, other than to say besides being completely heartbroken and beyond words missing our little angel, we are happy that she is at last complete again and at peace.

After my last blog post yesterday, Mia began to decline. She required more and more breathing support just to survive and her lungs were failing without it. We could not let her continue to struggle, as she has for so so long. Mia was tired, and she was ready. Fitting that she chose Labor Day to go.

The picture above is from a couple of years ago at the incredible Boston College Campus School where she loved to go and learn and discover. That is how she went, in Francesca's arms with me by her side, and our parents surrounding the three of us.

Thank you to all for the outpouring of love and support that you have given us not only in the last few days, but all of Mia's precious life. She made the world a better place and all that knew her have been forever changed.

We are having a memorial service near our home in Massachusetts on Friday, and probably another for our friends in New York who cannot make it. We're still sorting it all out. Details to follow.

Thank you again.

Love,
Noah

Monday, September 01, 2014

Labor Day


Thank you so much to our amazing community and network of friends, family, and beyond. It is incredible the reach that the internet allows, bringing people together and making it so easy to help and support one another. We are eternally grateful for the support we have been given, not just in the last few days but throughout all of Mia's life. Whenever we have needed it, you have all been there for us and it has made all the difference. 


Mia had an OK night. They are trying to ween her off of the ventilator, but her oxygen level began to desaturate and they had to raise it back up. She had a fever of 101 but beyond that no major episodes.

I spoke to the nurse this morning from home and both Mia and Mom are resting. They lowered her oxygen support to 60% and she seems to be tolerating that level so we'll see how that goes. Her temperature has come into a more normal range and she hasn't needed any Tylenol.

She's on quite a large dosage of morphine to keep her sedated, as well as other drugs to help with the pain. It breaks my heart to see my little girl in this state. I miss her bright eyes, her smile when I walk in the room, her yelling at me when she has a dirty diaper, and her incredible lust for life and wide-eyed curiosity of all things.

I know that that is all still there, somewhere below the haze of medications, wires, tubes, and monitors. I pray that we will see that little girl emerge from this again. If nothing else Mia is a fighter, and her lesson of strength and courage is beyond description. She inspires me to show up, to see the beauty of this life even when it seemingly knocks you down and drags your around. We have learned the most important lesson you can from this little being of light - that we are here to love unconditionally. We came from love, we are love at the very core of our being, and we are here to love and care for one another. That's it. Nothing else truly matters.



Thank you all for you support. We feel loved and want you to know that you are loved by all of us.

Enjoy the final days of summer and carry Mia in your heart and continue to pray for her recovery.

Love,
Noah, Francesca, and Mia

Friday, August 29, 2014

Summer's End

As we sit bedside at Children's Hospital, once again I'm realizing that Mia's blog has suffered as the business of life takes over and posting updates to things like Facebook make it easy to fill in the gap. 

But the quiet time sitting bedside as we watch for even the slightest improvements in Mia's condition make for good reflection time. 

I was going to post some pictures of Mia in her hospital bed, hooked up to wires and tubes and breathing apparati, as she is right now but it didn't feel quite right. 

What she, and we need right now is love and happiness sent our way, not worry and fret, as a picture of her here at the hospital would only show a moment in time and not the bigger picture. 

The truth: Mia got incredibly sick, and if we hadn't gotten her to the hospital last night and instead tried to manage this at home as we usually do she probably would have died. 

An angel came into our home last night, a new nurse we had never met before who was just coming to meet and greet, to potentially take a few shifts as one of our home care nurses. She saw how Mia was struggling, jumped right in and starting doing some respiratory therapy with her. She asked, "Why isn't this child in a hospital? They could treat this infection much faster with IV antibiotics." 

By that point Mia had gotten much worse, really struggling to breathe and it was clear what had to be done: the ambulance was called. I'm confident Francesca and I would have reached that same conclusion sooner than later but I hate to think that by that time it may have been too late. We both have been so sleep deprived in the last week that we weren't thinking with the clearest minds. 

Divine intervention truly. 

She's improved a lot since last night but still has far to go. Her blood pressure is too low, her heart not strong enough to keep it high without IV medication and her lungs are still clogged with pneumonia. They had to stop her normal diet, which is the one thing keeping her metabolic condition and seizures in check. But they're slowing getting her back to where she needs to be. We, and the doctors are hopeful.  

So with that said I thought I'd post some pics of our little summer vacation from a couple of weeks ago, a great time spent with family and friends. I'd rather you see Mia in this way, more smiles and love being what's needed here than worry or comcern. Thanks for reading, it feels good to write and connect again. 

















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Friday, October 04, 2013

Off to School



Well we're back into the full swing of school and fall activities after a very relaxing summer. 
Mia missed an apple picking class trip due to being a bit under the weather last week but she is feeling a lot better and has been to school everyday this week!
Today she wasn't quite feeling it and I think she wanted to just stay inside under the blankets. Can't say I blame her as the nice weather we've been having is going to give way to the first fall rains later today. 
Mia has moved up a grade and has a brand new teacher. We're very excited to see all the fun things they have planned this year!

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Sunday, February 10, 2013

Mia is 6!!


It's hard to believe that 6 years ago today we welcomed Mia Bella into this world and our adventure began but here we are! In the beginning we used to celebrate a week of her life, then a month - each one a milestone for us as we had no guarantee of just how long we had with her. We still don't, as life is never guaranteed, but as weeks turned to months and months to years we kinda forgot the doctor's grim predictions as birthday after birthday proved that Mia's will to live was stronger than anything.
February 10th is usually a big celebration around here with family and friends but today it was just the 3 of us due to the nor'easter that dumped close to 2 feet of snow, canceling the travel plans of Mia's grandparents. Mia's amazing nurse, Rachel and her husband did manage to dig out and come over for some cake.

Even though we've gone from celebrating her birthday from months at a time to the more traditional annual event, Mia Bella continues to inspire and amaze us every day. Her spirit is stronger than ever and her will to live is never ending. Today and every day she teaches us to count our blessings and they are many.

Happy Birthday Mia! 2/10/13