Sunday, September 7, 2025

Sunday, September 7, 2025

Tonight's picture was taken on September 8, 2009, the day that Mattie died. I wanted to capture Mattie's precious foot. Mattie's death was not peaceful, instead it was traumatic. Fraught with intense pain, gasping for air, and his bed looked like a crime scene for five to six hours. There wasn't enough pain meds that could be injected into his IVs. Which was why, Mattie's doctor eventually prescribed a lethal dose of propofol to aide in his death. When I tell you this will live within me forever, I am not kidding. While the propofol was being injected into Mattie, I was holding him in my arms. Within a minute, his body went limp and the monitor behind me flat lined.  FLAT LINED.....The most horrific sound a mother could ever hear! 

Quote of the day: The reality is that you will grieve forever. You will not 'get over' the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same. Nor should you be the same nor would you want to. ~  Elisabeth Kubler-Ross

Tomorrow, September 8, will mark the 16th anniversary of Mattie's death. 16 years! How on earth is that possible!? Mattie has been dead twice as long as he has been alive. Truly it is too much to bear, and anyone who thinks a mom gets over the traumatic loss of her child is 100% wrong. I know my friends wanted me to return back to the way I was after Mattie died, and I suppose within their reflections they were trying to give me hope. But the reality is this..... platitudes, niceties, and the Disneyland view of the world doesn't work for bereaved parents. 

The only way to help a grieving mom, is for you to find the inner strength to sit with her in this grief. It means hearing over, and over, and over again her stories, her fears, her tears, and her sadness. Frankly it is a place that is hard to be in and the depths of this loss are truly overwhelming for most people. I say this because I lost many close friends over the death of Mattie. My life was too much for them, and as one friend told me, her family encouraged her to end our friendship after 15 years because it was making her sick (knowing what happened to Mattie). 

I went back to my blog posting from September 7, 2009, the day before Mattie died. I copied and pasted a portion of the blog below. What surprised me was reading my words from 16 years ago, they truly struck me. These words hit me emotionally, because it transported me right back in time and I could feel the fear, despair, and depression in my words. That blog posting brought me to tears. When I wrote it, I did not know Mattie was going to die the next day. In retrospect, since I reported that Mattie's nurses came in to say good-bye to him, I should have put two and two together. But I didn't! Maybe I just couldn't! With Mattie's journey we had two modes.... fighting for a cure and then helping him die. There was no time in between to process anything, to find equilibrium, which I think made it very hard to transition from a cure to death. 

At the end of the blog posting, I mention that we were gifted a family beach trip in September of 2009. Honestly if I did not write about it, I would NEVER have remembered that gift. The gift is a blur to me, but what that gift tells me now is even Mattie's treatment team did not think Mattie's cancer was going to metastasize six weeks off of chemotherapy. I think they thought we would have more time together before a cancer recurrence. 

Before leaving you with my words from 2009, I feel it is important to state that one of the things that comes through in that blog post is the incredible support community that surrounded us. Mattie had the BEST nurses! They became our family for 14 months and the blog comments from friends highlight how thousands of people walked this heart wrenching journey with us. To those of you who have been with me since 2008.......... THANK YOU, for those of you who are just tuning in, thank you for joining my Mattie blog family. 

BLOG POSTING from ---- September 7, 2009 

Our day started out with a sad scene. Mattie's fish, the special gift my parents got Mattie yesterday, died! I knew this was an ominous sign today!

Mattie had a very difficult start to the day. His blood pressure has been dropping and is dangerously low, and he had a coughing fit, which left him gagging and unable to catch his breath. He was deathly scared, and when Dr. Shad and Kathleen (Mattie's outstanding HEM/ONC nurse) saw him, they mobilized into action. In reality what happened next moved so fast, it was almost a blur. Mattie was in minutes being pumped up with pain medications and Versed (for anxiety). Now that I can reflect on the morning, I am so thankful we are in the hospital. Because Mattie couldn't possibly be cared for humanely at home based on the symptoms he is presenting. It is ironic that Mattie seemed to know this, and had a better feeling for his condition and his decline than us. Once Mattie received all this medication, he asked if I could snuggle with him, which I happily did. However, Mattie is being kept in a comfortable state, so therefore he really isn't talking and spends a lot of time sleeping. The Mattie we knew is NO longer!

Dr. Shad came to the hospital early because she felt that the end was near for Mattie. She stayed at the hospital all day, and we had a great deal of support from the HEM/ONC nurses (Kathleen, Tricia, and Miki). This whole scene of watching Mattie slowly dying is heart wrenching and at the same time surreal. How can my healthy, active, bright, and spunky son be dying? I see it happening, but it is SO hard to accept!

We spent a great deal of time today monitoring Mattie and also talking with him. In fact, when everyone was visiting, we had solemn moments, but also moments of laughter. Laughter because Mattie was a very humorous fellow! Kathleen told me that the nurses love Mattie, but they also love us. That Mattie has left a legacy, and his love will always live on within us. Mattie did not go to school this past year, but in a way he went through the hardest school of all. The school of cancer, which shows you the most vulnerable and raw sides of life. In fact, it has left me so raw, that I emotionally am not the same person anymore.

Mattie's nurses all came in tonight at their shift change to kiss and say good-bye to Mattie! It was very touching. Kathleen told me that even though Mattie isn't awake, he can hear us, and that he worries about us and is holding on because he knows we do not know how to say good-bye to him. So tonight, we mustered the energy to talk with Mattie together. We told him we loved him, were proud of him, that he did a great job fighting the cancer, but now he is in control and can decide when he has had enough and wants to rest. That we will be okay, and that we will always, always love him. We told him that we couldn't have asked for a better son, and that he was going to a place where he would be at peace, able to run and play, and meet up with family members and friends who love him but whom he has never met. My sign off tonight, as it always is to Mattie was, "Una Moon loves Mooshi Moo." Mattie coined the nickname, Una Moon for me, and he is my Mooshi Moo.

It is hard to say how long Mattie will be with us. It could be hours or days. But it is no longer weeks! His whole disease has been one crisis after another. His cancer required three major surgeries, 11 months of chemotherapy, and intensive physical therapy. However, there was NO break between treatment and recurrence. In addition, even death is not an easy process for Mattie. It has hit him hard and hasn't given us the chance to talk as a family. This year has left me shell shocked, questioning everything about life and the future, and the true purpose for our lives. Mattie is being kept comfortable, which is a blessing, because the sounds coming out of his body and lungs are frightening. I doubt we will sleep at all tonight! I am saddened that Mattie will be unable to go on a planned beach trip that the Lombardi Clinic arranged for us on September 13 through the Foundation, Believe in Tomorrow. It wasn't meant to be clearly. One thing I do know is I hate Osteosarcoma with every fiber of my being. I have seen Mattie suffer way too much this year, and this suffering will always remain a part of us.