Special Needs Spotlight || Jackson

Hi! I’m Claire, wife to amazing, kind, Kevin and mama to the three most amazing kids I could ever imagine: Jackson, Charlie, and Adele. Charlie and Adele are about to turn 4 (!!) and Jackson’s 6th birthday was in May. Unfortunately, we had to say goodbye to sweet Jackson on January 22nd of this year, and our lives have been forever shattered. Jackson had a very aggressive brain tumor on his brainstem called a glioblastoma, which his doctors (and my husband and I) believe was part of a larger syndrome, BMMRD. Jackson loved robots, birds, Star Wars, his brother and sister, and his dad and me so very much, we all miss him more than words can tell. Miggy, thank you so much for sharing our story today.

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Miggy: Claire thank you so much for being here today and sharing your sweet son Jackson with us as well as your tender journey. Jackson passed away as a result of what you and geneticists believe is a rare genetic syndrome called BMMRD. Let’s start at the beginning, Jackson was born healthy and remained healthy the first 3 years of his life, then what happened? What were some of the first signs and symptoms of Jackson’s condition and how did you cope in those early weeks and months?

Claire: A few months before Jackson’s third birthday we noticed that he was bleeding when he would use the bathroom. The bleeding kept increasing, until his first colonoscocpy, 1 month after his 3rd birthday, when they found that he had four very large colonic polyps. The GI team that we were assigned to at that time was completely unfazed. They wanted to repeat the colonoscopy the next summer, and it was during that summer that my gut started to tell me that something was very wrong. The repeat showed 4 more polyps, some of which showed precancerous changes. My son’s doctors continued to be pretty calm; they referred us to genetics, but, looking back, it was quite clear that they were not expecting his case to develop so terribly. This period was actually the hardest one for me, prior to Jack dying, of course. I felt so concerned for my son and so very concerned for his health, but everyone around us was acting like everything was fine. It was just me, and my husband’s physician, that thought something terrible was about to happen, and that was a very lonely and isolating place to be.  

Miggy: Can you please educate us about BMMRD? What are some of the signs and hallmarks and how did it affect Jackson’s and your day-to-day life? Is it always fatal?

Claire: BMMRD stands for “Biallelic Mismatch Repair Disease”, it used to be called “Turcot Syndrome”, “Lynch 3”, or “CMMRD.” Functionally what this means is this: each of us has millions and millions of cells in our body, that divide to repair our tissues. Each time a cell divides there is a chance that its DNA can gain mutations and normally cells are very good at recognizing and fixing mutations. In BMMRD, the mutated DNA is not efficiently fixed and the cells can become cancerous. BMMRD usually presents with colon polyps, bone marrow failure, or a glioblastoma brain tumor (although other areas can be affected as well), these are areas where cells “turn over” frequently, which leaves lots of opportunities for something to go wrong. BMMRD is genetic, but in Jack’s case they’ve been unable to find the gene that caused it. Because of that, we have no way of knowing if our other two children will be affected. Before Jackson was diagnosed with the brain tumor, BMMRD affected him very little. He was so happy and active, and for all intents and purposes, his life looked completely normal. At age 4.5, when he was diagnosed with the brain tumor, BMMRD affected him a lot.  Initially, he had surgery, spent some time in the ICU, had an eye that permanently turned in, had daily radiation for 7 weeks, and was immunocompromised. Around four months after surgery, things really evened out for a few months; treatments were easier and his visible health was good! Unfortunately, on August 27th of last year we found out that the tumor was back and he required a second surgery. After this surgery and with the tumor progression, he lost the ability to use one arm, a lot of his leg movement, and was just generally sicker.  

Miggy: Most parents think, “I can’t even imagine…” in regards to their child passing away, yet this is your reality. How did you come to grips with this reality and how to do cope day-to-day?

Claire: This is truly the most unbelievable thing either my husband or I have ever experienced, or thought we would ever experience. The amount of pain is just extraordinary. Jack had great comedic timing, and he knew how to give meaningful compliments, he was kind, and such an old soul.  Missing someone like that, someone like HIM, is just the very worst. As far as “coming to grips with it”, truthfully, I’m not sure I have. All day long my brain does a reality check on itself; it’s like an undercurrent of “something feels wrong, Jackson’s dead, is that actually happening?” Over and over, all day, every day. Coping is made possible by a few different things. Charlie and Adele are the most motivating factors for living life every day.  Kevin and I both have strong faith, which is the only reason we believe we are able to keep functioning. But then, also, there’s this: when it’s difficult for me to pull it together, or when this all just feels like way too much, I close my eyes and truly focus on what a gift it was for me to mother Jackson. What a gift it was, to have him, even for such a very short time. That helps the darkest moments the best, just really holding tight to the fact that I wouldn’t change one single moment of our journey, if it meant not having Jack. I’m so grateful that I was given a front row seat to his journey.

                              

Miggy: Now that your son has passed away, what is the best way people can approach you and your family about this? Is there something you wish other people knew so as to be more sensitive/helpful as you and your family grieve the loss of Jackson?

Claire: Oh Miggy, this is such a hard one, because everyone grieves differently, but here is my answer. I like to talk about my son. I like to talk about him when I’m happy, and I like to talk about him when I’m sad, and when I’m too sad to talk? I want to hear you talk about him.  If you knew us during our journey and chose to walk alongside us and hold us close during the one of the scariest times of our lives, then truthfully, there’s very little you can say that would be “wrong.” Some of my nearest and dearest are blunt, some ask questions, some tell stories, most say that they “don’t know what to say,” but all of them have made it clear that they love us and care for us and are here no matter what. So they can really do no wrong. However, if you weren’t involved when things were bad, and you had the chance but stepped back, I think the opposite is likely true. At least now, at 7 months out, I’m not sure that there’s much you can do or say that would be comforting or helpful. If you’re new to our journey, and didn’t know us when Jackson was sick, just ask questions and don’t be afraid to say his name! My biggest, simplest, pieces of advice, though, are these: 1. Speak from a place of love, rather than from a place of trying to fix this terrible situation. 2. When in danger, when in doubt: just ask! My dear friend texted one night and said: “A few weeks ago you said it was still getting worse every day? Does that still hold true today or are things less heavy? I wasn’t sure, so I wanted to check with you.” That was such a kind, brave and thoughtful text to receive.

Miggy: Will you tell us something you love about Jackson? A special story, a personality trait or just something others might not know.  

Claire: It’s really hard to pick a single story about Jack. I think one of the things that made him so unique and special to us was his light. He had a way about him that was calm and peaceful. Anytime he came into a room it seemed like things were more relaxed and easy. There was a bright peace about him that was so unique and precious.

Nine days before Jackson died, he got his wish to become a Jedi and to defeat Darth Vader.  An amazing group of volunteers put together an afternoon where he, Charlie and Adele, and a few cousins and friends, were all trained, by Luke Skywalker, to become Jedi.  Near the end of the training, Darth Vader invaded and Jackson got up and chased him out of the room.  This is one of my sweetest memories of the last month of Jack’s life (although there are so many!). Barely able to walk, yet ditching the wheelchair and the help to protect us from Darth Vader. Such a sweet memory.  

Miggy: Claire, as you share Jackson’s story what do you hope people will take away from it?  Is there one overarching message or lesson you learned from being Jackson’s mom?  

Claire: The Monday after we found out that Jackson’s polyps had precancerous changes I was in a really weird headspace. I was having trouble thinking and concentrating; I was just really distracted and worried. I was at the grocery store with my three little loves, and my card was declined! A total stranger behind me, a young woman with a beautiful little boy in her cart, paid for my groceries. She said all of these kind things about watching me with my kids, and paid for my groceries. Still, two years later, I get chills every time I think about. She thought she was paying for the groceries of a mom who was having a hard time financially, she had no earthly idea that she was making the day of a woman whose whole world had just been rocked. I think of her, so often, and the example she showed to her son, to my kids, and to me. Just be kind. Be kind when it’s easy. Be kind when it’s hard. Be kind when the people around you don’t deserve it. Be extravagant with kindness. Kind people have changed so many bad, hard days, into good sweet memories by just showing up and doing their thing.  The sweet lady in Aldi was just the first, but there were many, many more throughout Jack’s battle with brain cancer that chose to be kind and as a result have made such lasting impact.  It has been a pleasure to watch the kindness of others. I hope I can live out this kindness in honor of Jack, to spread some of that bright peace to others.

Miggy: Lastly, I just wanted to ask if there’s anything else you’d like to share with us–about BMMRD  your son Jackson, your family, terminal illness, or love?

Claire: Loving a child who is dying is probably the most precious, sacred thing I have ever done or ever will do. In our culture, there are so many pressures on parents and on parenting.  Parenting a child who is dying means you dodge so much of that. You aren’t worried about his grades or his sports ability, his sleep habits or his ability to be independent—you really do get a rare opportunity to just love him. To sit with him and soak him in. To let him fall asleep in your arms. To make him two desserts, and to tell him over and over and over what a GIFT it is to be his parents. I am so very grateful for that time, and for the gift of knowing what a blessing it truly is to be a mom.

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Claire, I am speechless. Thank you. Thank you. Thank you. I will never forget this spotlight and some of the many, amazing insights you shared as well as your sweet son Jackson. I know these thoughts and words have come at a huge price, a price you gratefully paid to know and mother your son Jackson. It was an honor to read and share your words. There are too many nuggets of wisdom to go over all of them, but two that really stood out to me were: The fact that the best way to navigate your pain is by focusing on the gratitude for having been Jackson’s mother and “Be extravagant with kindness.” Sending all my love to you, your family and in memory of Jackson.

Thanks as always to my kind and generous readers. It’s because of you that I continue to find amazing people like Claire to share these amazing stories of love. The special needs spotlight are stories of love. As always if you or someone you know would like to share your story please email me at thislittlemiggy at gmail dot com.

Have a lovely weekend.

XO,

Miggy