Childhood Cancer Awareness–First Day of School

Today was the first day of school, and I love watching the neighborhood kids take photos and hop on the bus for a new year of excitement and learning. Some may be going to a new building or starting at a different school. Some may connect with old friends or meet new ones. No matter what, it’s a happy day filled with joy and probably some anxiety.

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First day of school in our new house when the boys were 8 and 6.

Nick was diagnosed with leukemia in the summer, so many of his school friends never knew he was sick. Social media wasn’t readily available. We updated family and friends through the CaringBridge website, but when school came around, Nick only went on his first day. No one understood how ill he was. He had been accepted for the DDE program, since he wanted to be a technology teacher, but eventually he had to drop it as he couldn’t keep up with the work.

We hired tutors, but he was so fatigued, he struggled with motivation and learning. Shenendehowa School District was wonderful in that they gave him the basic requirements for homework, but the isolation and missing his classmates was very hard.

It was difficult for Stephen as well, since he and his brother would have been in middle school together. Instead Stephen went on the bus alone, and they missed all those possible memories together. When we lost Nick only two months into the school year, it rocked the school community.

Cancer changes the formative years of children. Losing a classmate is traumatic. Losing a sibling is life-changing and devastating. The ramifications don’t often show up until years later.

When a child with cancer attends school, they deal with side effects, possible infections from a compromised immune system, bullying, isolation, and misunderstanding. A child doesn’t have to look sick to have cancer, so it’s important to create empathy and educate students on what a child with cancer or any other chronic or life-threatening illness is going through. What an opportunity to teach compassion and make a difference in someone’s life.

Besides missing out on so many wonderful memories, the world lost the potential of Nick, someone who wanted to use technology to help others, who enjoyed working with younger children and making them smile.

Today I remember all the children who are no longer with us and their parents who struggle with those firsts every single year. And I send support and hugs to our children in treatment who missed their first day. I hope you get back to school soon.

Be aware that someone might be struggling more than you know. Show compassion and you might give them that reason to smile.

September is Childhood Cancer Awareness, but every day is the chance to be kind.

Childhood Cancer Awareness–Team Support

We have said that when a child is diagnosed with cancer, they become part of a family that they might not have wanted to be a part of, but it’s a family that makes the journey bearable.

Most familiesI know create a team name to unify their family, raise awareness, funds, and provide hope. It’s in our nature to rally for the underdog, the team that is beating the odds, and is determined to win.

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These team names and slogans a only a few of the hundreds of families just at The Melodies Center who pull together to make miracles happen. In addition to current research and safer treatment, families need emotional support. They need their team.

Every family handles cancer differently, but everyone needs to know they have a team in their corner who will remain with them through their entire journey. Family and friends who help take care of siblings, cook dinner, clean the house, mow the lawn, and be there with a shoulder to cry on.

Sometimes despite our best efforts, we lost one of our teammates and we are never the same. We miss Justin, Nick H., Reese, Markel, Nick C., Lucas, Maddie, Ben, Myles, and so many more. But our team never quits, because there are other children and teens who are still playing this challenging game of cancer.

The families who lose their child must not be forgotten. They are always a part of our team and still need support and love.

No matter what team you are on in cancer, everyone wants you to win, to have a child who is healed and will live a full life.

Please share your child’s team slogan if you have it on a t-shirt or the words. Inspiration often comes from our hardest moments, but our teams gives us hope.

Raise awareness for childhood cancer during September and all year long.

 

September-Childhood Cancer Awareness Month

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This is the last family photo we have of us together. It was Labor Day weekend 2008, and our family convened to share the love and laughter that has always carried us through hard times.

Nick had developed an infection, had appendicitis, and spent most of September in the hospital. It’s like a time warp. The world continued around us, people came and went, but we were stuck in this cocoon of uncertainty. I had always assumed Nick would survive, but with the heavy doses of methotrexate he had received, the infection became life threatening.

As a parent of a child with any life threatening illness, it’s very difficult to make the right decision. We were exhausted, scared, and not familiar with this disease. We had multiple doctors giving their suggestions and sometimes it was like throwing a dart. Nick continued to decline, but we still rallied surrounded by hope and the need to believe that he would be alright.

September is Childhood Cancer Awareness month. It’s one of my lowest months of the year, because my heart remembers how much Nick suffered. I didn’t journal much in that month and really I don’t want to remember the details.

It is 10 years since Nick battled cancer. Time doesn’t heal, and it doesn’t make it acceptable that I lost my oldest son. It doesn’t mean I’m over it or that I’m always OK.

10 years later, I’m living with Nick’s loss beside me. Sometimes the grief is a burden I have to carry, and it weighs heavily on me. Other times I can stand tall and walk alongside it and hold others up.

I share this because I want those who have lost their child to know that I am here with them. I will walk alongside them, so they know that some day they will be able to walk alongside their grief. Grief is chronic. It flairs up, it eases off, and then ruptures into painful boils, scabs over, and starts again.

I may never be whole, but I can live a fulfilling life. You might not believe it right now and that’s OK. I’ll be with you through this journey no matter what point you are at.

Taking action, raising awareness, demanding better treatments for our children battling cancer is the path of those who are on this journey with me. September is Childhood Cancer Awareness Month, but every day too many children are diagnosed.

Remembering Nick on Independence Day

July 4 is a day to celebrate independence and the freedom our forefathers fought for us to have every day. 10 years ago, it became the day Nick was diagnosed with leukemia.

I believe there is emotional scar tissue with trauma. As July 4 approaches, I feel lethargic, sad, and loaded down with the grief I work to overcome every day. My mind and body know what’s coming. Once July 4 starts, even though I don’t relive all the terrible moments of his cancer journey, part of my mind and body remembers it. The emotions find their way to the surface.

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July 4, 1999

But just as there is emotional scar tissue, there also is emotional endurance that fortifies me with a strong foundation to get back up when the scar tissue limits my ability to live life to my fullest.

 

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July 4, 2008–the day Nick was diagnosed

What gives me this endurance? Surrounding myself with family and friends who lift me up. Those who came the day we heard the news, took care of us when we had to say goodbye, and have supported us over the last 10 years.

They know when I’m faltering, when Stephen needs space, when Luke needs a distraction. I don’t have to say a word, because they know today is a very hard day, but we live it remembering an amazing, enthusiastic, and fun boy who was taken took soon.

Over the years, I have learned what I need to do to break up the scar tissue and provide self-care. Sometimes, I do really well, and I think yes, I can do this. When I think of Nick I smile and reminisce about my two energetic boys who were inseparable.

Other times, I’m flat on the floor, as another friend described it, and I can’t imagine going through the rest of my life without one of my sons to hold, talk to, and share his life experiences with. These are the times when my foundation of family and friends soften my fall and stretch the scar tissue until I can stand again.

I’m in a place today where I am searching for the good. I am grateful for Stephen and so very proud of him. He is doing what he needs to do to live with his loss, and I respect that. My husband is my biggest foundation and knows when he has to catch me. I try to catch him as well. We are continually learning what we each need and give one another the space to grow and grieve.

When I fall and take a hard hit, I give myself permission to reach out. I know I don’t have to be strong all the time. I’m not. I can’t be. Last month was one of those times, and I am grateful for my family and friends for saving me from falling off the cliff.

Losing a child is not an easy journey. Having a child with cancer is not easy either. It’s a road of ups and downs, fears and triumphs. Cancer steals more than our independence.

Today I wish everyone a Happy and healthy 4th of July. For those missing their children, have people to catch you when you fall. We are here for you. For our families currently battling, never give up and keep fighting. For everyone touched by a life-threatening disease, savor every moment and always have hope.

Much love to my boy.  We have lots of Double Bubble to give at the parade. Always in my heart.

Gillette Carnival is in Town!

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It’s that magical time of year when cotton candy, fried dough, and spinning rides are the highlights of a child’s life. The Gillette Carnival is in town!

The Gillette family has always donated a part of its proceeds to different charities. For the last two years, Nick’s Fight to be Healed Foundation has been one of the recipients. Their support is greatly appreciated as is the support of the Loiselle family who made this happen.

This year’s carnival is June 5-June 10 at The Town of Halfmoon park. The very best part of this carnival is on June 7, when it’s Melodies Center Family night! From 6-10pm, children battling cancer get a free pass on all the rides, which is donated by Gillette. They have a night of fun and not worrying about their treatment or how cancer has completely flipped their lives upside down.

Contact Courtney Hill at The Melodies Center if you and your family would like to go.

Gillette Carnival 2018 Flier

Their parents can take a break, because teens from Nick’s Round Table will be there to join them on the rides.

One of my greatest joys in forming Nick’s Fight to be Healed is hearing laughter and see smiles on our children’s faces. It’s takes more than medicine to heal a child and that is why we here. Gillette Carnival is making our job even easier.

For more information on the show, visit Gillette Shows

 

Family Connections Program

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It takes amazing doctors and medicine to physically heal a child with cancer. It also takes social workers, child life specialists, music therapists, art therapists, therapy dogs, and other forms of therapy to emotionally heal a child and their family from cancer. This isn’t a quick fix. During treatment, many programs are available when a child is inpatient or in the clinic. Nick’s Fight to be Healed Foundation, along with many other practitioners and fabulous foundations, provide distractions and stress-relieving programs. These are just as important to help a child, their siblings, and family live a fulfilling life after treatment.

This idea of connecting our families outside of the clinic and hospital has long been a wish for our foundation. With the guidance of Courtney Hill, Licensed Clinical Social Worker and OSW-C (Oncology Social Work Certified), this is now happening.

On Wednesday, March 7, the pilot Family Connections program will begin. Its purpose is to bring families affected by cancer, no matter where you are in your journey, together to build community, share thoughts, feelings, ideas, and connections.

Karen Patchell, board member of Nick’s Fight to be Healed Foundation, is a Baptiste-inspired Registered Yoga Teacher for children and adults. She began the Flow to be Healed program at the clinic in February 2017. Fun games and simple poses empower a child to develop tools that help them move and use breath and focus to take their mind off any distractions or discomfort. Yoga improves their self-confidence and heals mind, body, and spirit. Children and siblings will have their own separate yoga activity and then parents, caregivers, and older teens will have the opportunity to stretch, flow, and decompress. Remember to wear comfortable clothing! That’s all you need.

Janine Cammarata is co-founder and president of Nick’s Fight to be Healed Foundation. She started the foundation in memory of her son, Nick, who passed away on October 26, 2008. Janine is a published author and teaches journaling for healing and self-awareness through her Write to be Healed program. Journaling encompasses so many different art forms and topics from daily events, junk journaling, goal setting, tracking, and buckets lists. But it can also be transformative, life changing, as well as healing.

This program is open to everyone in your family. We hope you can take advantage of it. The next one is scheduled for April 4. Below are some FAQs you might have. Please let Courtney know if you can come, so we can have enough supplies for everyone.

It takes more than medicine to heal and together we are stronger.

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Dance Celebration

Oh what a night! Glen Sanders Mansion was beautifully decorated for Nick’s Fight’s 3rd Annual Dance to be Healed Celebration!

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Angie Silipigno, her girls, and Courtney Hill did an amazing job decorating the tables with red and pink leis, hats lined with hearts, fun eyeglasses, purple beads, with votives and mirrors provided by the staff. Red lights lit up the walls and photos of our families dancing from previous dances lined the room.

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The children and young adults looked beautiful and handsome. The little gals were very excited to get their hair done by Courtney and Jackie of Pixie Salon and makeup done by Ebony Muniz and Autumn Wright, and they twirled in their dresses and fancy shoes. Family photos were taken by Elizabeth Fox Photography. Many memories were made.

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Courtney of Pixie Hair Salon styling Maddie’s hair!
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Jackie of Pixie Hair Salon curling Regan’s hair.

For the third year in a row, Mo Haskins of Cool Cat DJ played music that kept the kids on their toes. Cameron knew every word to each song and danced around the floor interacting with everyone!

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Managed to get Cameron to stand still for a photo!

Ali was adorable! He is Nick’s Warrior for the run this year on September 30! Mark you calendars! His sisters Sara and Asma volunteered with Nick’s Round Table along with many other teen volunteers.

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Savannah and Maya hung out at the kids’ table doing activities.
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Nick’s Round Table Teen volunteers!
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This table was packed all night!

Little Lucas danced all night and learned the sprinkler and mashed potato dance. Abby and Regan were inseparable. I loved seeing Brittney, Kacey, and Kendra–incredible young adults giving back despite their journeys.

I enjoyed talking to all the families and am grateful many were able to come and feel the love of family. For those who couldn’t come, you were missed, but we will see you at upcoming events. When I peered around the room, I saw children at the craft table, others were at the Open Box Photobooth sponsored by Christina Primero. They ate quickly and stayed on the dance floor. Parents, Melodies’ staff, friends, and extended family connecting and supporting one another, enjoyed their time together. This is my favorite event!

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Joe Santoro, Lucas’ dad, and George Sisco, NFTBH Board member, Kendra’s dad are both getting in the spirit!

Thank you to all the generous sponsors: Maddies’ Mark who sponsored all the families, Play it Foreward for the photobooth, Maria, Lucien, and Nancy from Glen Sanders Mansion for doing a beautiful job, Elizabeth Fox Photography, and Out of the Box Photobooth.

 

The Power of a Parent’s Words

The heart of a grieving parent is never healed. We don’t know how we can live with such a tragedy until we are in it. So often we exist in a state of wishing to be happy and drowning in sorrow because of our loss.

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Justin-a warrior who we lost 1 year ago today.

Today marked one year since a beautiful and courageous young man lost his life to cancer. Justin’s mom is feeling the pain I felt nine years ago on Nick’s one year angelversary. We can’t take the pain away, but can only let her feel our love and comfort. Everyone grieves differently, but a parent’s grief is soul deep.

It was appropriate that today I shared my book about Nick’s journey at my book signing. Even as I feel gratitude for everyone who came and spoke with me, I feel sad, because my number one fan isn’t right here with me.

When I started Shimmer’s Eggs, it was a creative memoir about my boys’ lives. After Nick passed, writing this book was a cathartic journey for me to understand what it meant to no longer have Nick. Losing him changed the ending, and I would never have written the same book if he had lived.

I know this book helps others. It’s difficult to feel joy when there is so much pain. But as Justin’s mom wrote today, she has much to do and knows her son waits for her. Her words helped me tremendously today, even as she is hurting.

As much as I miss my boy, I also have much to do. I have hope and love to share. I know that whatever choices I make, and however I choose to help people, Nick would approve, because it comes from my heart.

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Nick, 2008

Thank you to everyone who holds me up and supports my mission and message. It keeps Nick’s spirit alive just as Justin’s amazing mother shares his beautiful spirit. They both are missed today and always.

3rd Annual Dance to be Healed

All it takes is one moment in time when someone opens their heart and gives all they have. The connection between a nurse and their patient can be life-long for a child battling cancer. That nurse is the safety rope that prevents a child from falling over the edge in fear.

When Abby Sayles’ mom mentioned to Abby’s nurse Matt that her daughter wanted to marry him a chain of events started that have cumulated into a night of Courage, Hope, Love, and Life.

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Abby and Matt at the Abby & Matt’s First Dance

This celebration is one of the most important events that Nick’s Fight to be Healed Foundation sponsors. It’s a celebration, a dance, and a time for families to dress up, be together, and forget about cancer.

We want you to be with us. This dance is free to all children and their immediate families who are currently battling cancer or have finished treatment. For a small donation, it’s open to other friends, families, and anyone else who wants to join in the celebration.

Special thanks to our fellow foundations and volunteers who are donating their resources to make this a night to remember: Maddies’ Mark, Play it Foreward, Cool Cat DJ, Outside the Box Photography, and Elizabeth Fox Photography. And a grand thank you to Glen Sanders Mansion, who is sponsoring the room and many fun surprises!

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Registration ends on January 29, so get your tickets today!

Dance to be Healed Registration

Annual Donation to The Melodies Center

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Nick’s Fight Board L-R: Liz Carr, George Sisco, Colleen Williams-Wright, Dr. Lucas (Director of Pediatric Oncology), Angie Silipigno (Child Life Specialist, Melodies Center), Janine & Lucas Cammarata, Jonathan Isaksen, Annette Romano. Not in photo: Karen & Mark Patchell, Ann Frantti, Angela Chieco & Susan Sukols

A heart full of love and time spent helping others is a good day. When we come together to share the fruit of our board and community’s hard work that is a fantastic day.

On Thursday, December 14, Nick’s Fight to be Healed Foundation donated $25,000 to the Child Life Specialist position at The Melodies Center at The Bernard & Millie Duker Children’s Hospital at Albany Medical Center. In addition, we donated $15,000 toward technology needs in the new teen technology room that is currently being built in the pediatric oncology clinic.

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Lucas Cammarata, Angie Silipigno (Child Life Specialist), & Janine Cammarata

Lucas and I, as well as Annette, have seen first-hand how important and vital the child life specialist is to the children and teens being treated for cancer. They balance the medical and emotional needs of each patient. Angie is the only child life specialist in the clinic. There are more on the in-patient floor, but Angie meets every single patient as they are diagnosed. That’s 90 new patients a year, but includes all the patients who come for treatment from the previous years and check-ups from the years before that! Approximately 900 children, teens, and young adults are seen at The Melodies Center each year! Angie treats every single one of them as if they were her own. She feels their pain, revels in their successes, and holds them all in her heart. She is a major reason why we work hard all year to raise money.

Nick’s Round Table has raised money for the Teen Tech Room, and it is another huge need that we can’t wait to have filled. Teens and young adults with cancer are often in a transitional part of their life. Some are going through puberty, some are starting college, some are starting careers or life with a partner/spouse, but suddenly they are thrust into a world where they aren’t sure where they fit in. A teen/young adult’s life has not only been disrupted, but displaced.

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Nick’s Round Table L-R: Becca Abel, Angie Silipigno (Child Life Specialist), Katie Kelly, Sarah Olsen, Brittney Decker, Grace & Claire Isaksen, Rob Saba (Dir. of Development, Grateful Patients and Families at AMC)

Having this teen/young adult haven will give this specific age group a space to decompress and connect to their life outside of cancer. It can be a space where they can bond with others in their situation and hopefully feel the support we have for them and every other child diagnosed.

It was a busy year for us with families in need. Over $25,000 granted in financial assistance, $2,400 in gift cards for patients and families, $9,000 for Family Hope Bags, $2,000 in Nick’s Comfort Bags. This doesn’t include holiday support, magazines, DVDs, video games, arts & crafts, and anything else that comes to our attention. The time and effort that our board and volunteers put into making this all come together cannot even be counted. Board member Karen Patchell visits the clinic once and sometimes twice a week with Chloe our therapy dog and also to do yoga. The children absolutely love her!

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Amelia & Bella love yoga!

I couldn’t be prouder and more thankful for everyone who makes up our foundation. It’s important to sit back and absorb our accomplishments this year and since the beginning. Nick Cammarata and Luke Romano are surely proud of all we have done in their names.

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Thank you to everyone, and we look forward to continuing our mission in 2018.

Dancing in the Woods with Family

 

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Family. They come in all packages and sometimes when you least expect them. I saw Dr. Joanne Porter who was Nick’s oncologist at the 34th Annual Dancing in the Wood gala for The Melodies Center at The Bernard & Millie Duker Children’s Hospital at Albany Med.

I literally hadn’t seen her in months, and it was like I had seen her yesterday. When Nick was diagnosed, she said she was married to us now. Whenever we have needed her, she has been there. That’s family.

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I had no idea that cancer survivor and extreme frisbee player extraordinaire, Matt Bissett, was going to be at the event! Turned out that his entire family was there including his beautiful wife. They were in the video along with three other survivors. It was like a homecoming and family reunion all in one. To see Matt healthy and glowing makes all the hard work worth it. This is why we do what we do–to make sure our children and young adults grow into healthy and positive adults. His family had a wonderful time and my heart grew watching them all dance.

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Having some of my tribe attend is always a plus. They already know how important the mission of Nick’s Fight is, but when you connect it to the larger picture of how many children The Melodies Center supports, the need grows. 900 children a year are treated there and this event is only one of the many that raises awareness and funds.

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Family grows and builds as we look past the diagnosis toward having fulfilling lives post treatment. Kendra Sisco and Kacey Sisco (no, not related, but both cancer survivors) are doing just that. Staying connected to the staff and organizations who helped them through the hardest times in their lives is essential. I’m very excited to be offering more opportunities for connections in 2018. But the fact that they support each other is fantastic and emotionally important. Staying connected in any family is hard and for our cancer families absolutely vital.

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Two of some of the hardest working people at the hospital, Rob and Angie don’t slow down when it comes time to gala and event hopping. They balance work, family, and fundraising to raise awareness and much needed funds. Part of our purpose for attending these events is to show our support and express how important their roles are. Angie Silipigno, Courtney Hill, and the nurses, and other staff who help our kids every day at the clinic are truly superheroes who go beyond what their job entails. They stand true to what they believe in–the patients who are battling.

This year’s event was a true testament to a group of people working together to make change, raise awareness, and celebrate life. We are fortunate to have family who keeps us going and understands what it means to keep dancing through the woods toward a happy and healthy life.

Holidays

Woke up this morning not really excited about Thanksgiving. Part of me wants to stay in bed and avoid the day. Why? I think back on my dreams. Nick visited. Reality hits. Oh yeah. Sadness. No matter how many years go by, sadness, regret, loss, and pain will always be there on a holiday.

I think about the families who are having their first Thanksgiving without their child. For the first two or three holidays, I set a plate at the table for Nick. I needed that space for him to know that we would always love him and he was remembered.

I also had a candle burning near a photo of him and my dad welcoming them. We have Thanksgiving at my sister, Michele’s house. She gave me that space and knew we needed it. That is key to being with grief, and I love her for that.

Then after a while I didn’t need that space. It wasn’t because I forgot Nick or got over the loss. Neither will ever happen. I learned that his place is within and around me. The photo and candle stayed adding a photo of Luke’s dad when he passed.

Now I think of Nick. I remember stories of him, his funny faces, and smile.

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His love of cream puffs and Grands. The joy all the kids felt being together. It’s not the same. It never will be. So on my holiday mornings, I spend time with Nick. I write to him. I be with him as he is now. When I can come the holidays like that, then I can be with what is. I can find joy in the moment, right now.

Just like I make sure Nick and I have that special time together, I do the same with Stephen, Luke, and my family.

If you are missing your child today or any loved one, give yourself the time to be with them. Take those precious moments to feel their light and let your feelings flow. Then be with those who are sitting around your Thanksgiving table and soak in their love.

Wishing everyone a peaceful Thanksgiving.