Theme: Siblings
From the time that their sibling is diagnosed with a serious illness, any other children in the family will need support. New concerns and anxieties are present for both children and parent(s). Being aware of these and talking about them right from the start will help to create an environment that fosters good communication and strengthens relationships.
This Guide will help you to anticipate your other child(ren)’s reactions to their sibling’s illness, understand how to respond to and support the siblings, and prepare for potentially difficult conversations with siblings and others.
Theme: Siblings
Siblings of children with a serious medical condition need support. Within this infographic you will find some commonly expressed worries, concerns, and feelings from siblings of all ages, and ideas for how to respond.
Theme: Siblings
On July 20th, 2019 my husband Chris and I were married. Our daughter, Alayna danced the night away with us. Little did we know that 3 days later our lives would be forever changed. The day after the ceremony Alayna woke up covered in severe bruising and on July 23rd was hospitalized after we learned her platelet count was only 7,000 (normal range is around 250,000-450,000).
After numerous tests and a bone marrow biopsy, it was confirmed that Alayna had Severe Aplastic Anemia, a rare disease that occurs in 1-2 people per million each year. Her bone marrow was failing. It was not producing enough red cells, white cells and platelets to keep her alive. She would need transfusions of blood and platelets weekly. It was a crazy whirlwind of emotions in just 3 days – I always say it was like being on cloud nine from the ceremony to just crashing and burning. I couldn’t eat or sleep but I had to keep in mind that I had the most wonderful 3 year old little girl who was always looking up to me for guidance and reassurance. I really struggled mentally because Alayna couldn’t understand the severity of her disease but I had to keep a smile on my face. This disease could potentially kill her if we didn’t act in a timely manner with a treatment option. We just kept telling her she had “bad blood” but we were going to figure out a way to make it better.
After countless sleepless nights of research, we understood that if Alayna had a matched donor for bone marrow, it would cure her. The other drug treatment options might set her in remission, but they also came with a bigger chance of a relapse. The doctors caring for Alayna explained that a sibling would be the best, most effective match but the chance of a 10/10 matched sibling was only about 25%.
Alayna has a 1 year old brother, Mikey. At the time, we decided to get him tested to see if he was a match for Alayna. Mikey went through a series of blood tests as well as genetic testing to make sure that if he were a match, the Aplastic Anemia was not genetic. Thankfully, we did find out Alayna had the idiopathic (no known cause) form of Aplastic Anemia, not the inherited form.
I reached out to an awareness group on Facebook right away and tried to soak in as much as I could from others who have gone through the same scenario. I remember reading stories of families who had children who needed bone marrow matches and how they had many siblings and NONE were matches. It was unsettling to hear. After all, Alayna only had Mikey. For some reason though I had this ‘mother’s intuition’ that our little Mikey would be his sister’s superhero. I didn’t get my hopes up whatsoever, and I kind of kept it to myself that I felt in my heart he was going to somehow be a 10/10 match for her. I remember when I was pregnant with him, I found this sign for Mikey’s room that read “Little Boys Are Just Superheroes In Disguise”. Looking back, I thought to myself, “maybe that was God telling me that Mikey had a mission to save his big sister?” Mikey is also the complete opposite of Alayna. He is very laid back and a “go with flow” type. Whereas, Alayna is a caring, but sassy little girl who wants your attention. I tried to make light of the recent circumstances one night talking with Chris, telling him that maybe this is why Mikey’s so laid back, maybe he’s thinking in his head “Don’t worry sis, I got you”. It brought a smile to both of our faces.
Finally, after about three weeks, we sat down with one of the doctors to go over Alayna’s labs as was usual but I remember cutting him off and asking if the results were in yet for Mikey. I will never forget his grin when he said “Oh yes, Mikey is a perfect 10/10 perfect match!” Goosebumps covered my body and my eyes started to tear up. This was our silver lining to our storm. I couldn’t believe it. We then decided to move forward with the transplant. As scary as it was to move forward, for our family the benefits outweighed the risks. We knew with Mikey as a perfect match that it was in Alayna’s best interest to move forward with the transplant to give her a full and healthy life.
Although Alayna didn’t act or look sick (thankfully), her body was beginning to take a turn for the worse. She became neutropenic and required daily injections to boost her bone marrow to produce the cells necessary to help her immune system. She was at risk for catching a minor illness that would have the potential to kill her. I remember reading a lot on my Facebook group and just in general research of Aplastic Anemia how others have passed because they caught something their body couldn’t fight off either while they were recovering from a transplant or during one of the other treatment options. I remember thinking to myself if Alayna passed from an illness or a bad side effect from the medicines while going through with the transplant, I personally don’t even know how I would be able to go on. I think that when people have kids, it’s like having your heart walking on the outside of your body. It makes you vulnerable but we still have to make decisions for their future like it’s no big deal. But with this decision, her life was literally in our hands and just the whole “unknown” of the situation made it very difficult to handle for both Chris and I.
As we approached the transplant day, I began to get excited but also extremely anxious and scared as I thought about the conditioning treatment Alayna would have to go through. She would have to go through chemotherapy and I worried about all of the side effects from all of the other medications pumping through her little body. We were going to have to make her sick to make her better. I again started to worry about the risks of infection but I prayed and I asked others to pray. I felt confident in the medical staff but also that it was all in God’s hands at this point.
Eight short weeks from the day of the diagnosis, Alayna had her transplant. It still boggles my mind how we wrapped our heads around everything that was happening in such a short time. Mikey underwent his harvest 24 hours prior. He handled it like a champ and didn’t even need pain medicine. They were able to get enough marrow through both of the backs of his hips. We like to say Alayna was “reborn” on September 24, 2019 at 3:40pm. After all, it was her second chance at life. She stayed in the hospital a total of 31 days and was then released to the Ronald McDonald House where she lived with Chris, Mikey and myself until she reached 100 days post-transplant.
While Alayna was going through everything, I found that writing in a journal became really therapeutic for me. I was able to keep something for Alayna to look back on as well. Alayna did amazing through the whole process and so did Mikey. After all, a lot of our attention had shifted to Alayna’s needs. The doctors had prepared us for setbacks but Alayna thankfully never had any and her blood counts were looking amazing too. Since everything was going so well, I wanted to turn my personal journal for Alayna into a book of hope and courage for other families who are facing the same predicament. The book, “AlaynaStrong” is self-published, and I hope that other families facing the same diagnosis find it as a good resource to understand the process. I also wanted parents to know that it’s okay to be upset. It’s okay to be mad, but it’s not okay to stay that way.
Alayna just celebrated her 1st year post transplant. We decided to make the anniversary a time to celebrate both kids. We call it “Alayna Mikey Day”. Alayna is thriving with Mikey’s cells which is AMAZING! We are forever grateful to Alayna’s medical team and of course, our little superhero, Mikey. We can’t wait for when Mikey is older to explain how important he truly was for his big sister and all of us. I know at the time he didn’t have a say in the situation but I’m sure once he realizes it, he would do it all over again no questions asked. He is the most loveable little boy.
Ashley’s book “AlaynaStrong: An Unexpected Journey Through Aplastic Anemia” is available on Amazon.
Theme: Siblings
Hear from a panel of siblings during this In the Room event to gain insights into the fears and worries that siblings carry, the things that helped them (and those that didn’t), and how loving a brother or sister with medical complexity shapes them.
This session is moderated by Dr. Wendy Plante, who for over twenty years has worked with siblings of children with illness and disability and their families and has been involved with research and training to address siblings’ needs.
Theme: Siblings
In previous stories of my younger sister Lauren’s cancer diagnosis and eventual passing, I’ve used a metaphor I call Emotion Beach. Since she was born in December and would pass 10 years and 10 days later, just before Christmas, the entire month has double red flags posted warning of viciously choppy waves of emotion.
Almost as if it was foretold in a mental farmer’s almanac, right on time, December and this season brings an increased intensity and volume of my grieving thoughts. To be honest, it’s playing out right now as you read this. I’ve gone months without having an urge to write about these feelings, and suddenly a grief switch flipped, propelling me to write this piece.
I was in a therapy session earlier this year and was prompted with the question, how much weight does the grief of Lauren’s death carry?
I compared my grief to lava flowing from a volcano. In the immediate months and years, the lava was molten and completely volatile. The anger, depression, and numbness of loss were white hot and I burned myself and the relationships around me. During this stage, I developed a nasty habit of avoiding stressful emotions to a fault. My protection against the lava was burying negative emotions.
As time passed, the lava began to cool and set into place where it had spread. The coping habits I had developed were my default now, and I continued to avoid stressful emotions and bury negative ones. This behavior pattern would have consequences academically, professionally, and personally – things I’m still working to rebuild. However, the grief-stricken lava didn’t burn my finger to the touch anymore. I could bring up Lauren conversationally and feel joy, not sorrow.
Whatever negative emotion, habit or experience took place in the aftermath was forever frozen in place. Today, I must admit, my bad habits still exist. But now, perhaps because of time, therapy, or getting older and collecting more experiences, I now have the clarity to see them for what they are and actively try to counteract them. Grief has forced me to consider new realities and the uncomfortable truth that we are approaching the threshold of Lauren being gone for a longer amount of time than she was here.
My grief has changed. I can talk at length about the joy and kindness Lauren brought into the world just as much as a minute-by-minute run through of her final hours. My relationship to grief has shifted from being a burden to an appreciation and quiet respect for how far I’ve come in my journey. This is true for almost everything related to Lauren and her passing.
That ‘almost everything’ is the key though. One aspect that I’m certainly not at peace with is Lauren showing signs she is with me. We naturally cling to the idea that our deceased loved ones are at peace, free of any pain and watching protectively and lovingly over us. It’s a comforting thought and helps soothe the sting of relearning how to live life without them.
The thing is, I don’t believe I’ve ever had a sign from Lauren.
That’s not to say I don’t believe those who have passed can give us signs, I desperately want to believe that. I’m just of the mindset that I won’t believe it to my core until I see it and I simply don’t think I’ve seen it.
People around me seem to be getting signs from her. Her twin even encountered a medium at the grocery store. Most of the signs however seem directed at my mom. She has told me about hearing Lauren in her head and how Lauren provides one liners and quips about her day-to-day experience constantly. In the beginning, it would make me feel frustrated, and I worried my mom was struggling worse than I thought. That concern then turned to polite dismissal when she’d bring it up because whether it’s real or not, it’s a coping mechanism. Who am I to judge?
Like I said earlier, I have a propensity to avoid negative emotions. One form that takes is an intense skepticism about the afterlife. I take away literal interpretations of what I see. Lauren died in front of me so therefore she is not experiencing life as we know it and cannot interact with me.
I’m more likely to believe that Lauren being able to send me a message is an impossibility. I go back and forth on what I think she experiences right now, or even if she does. Maybe my skepticism is a coping mechanism, maybe it’s fear. I simply do not know the truth.
After exposure to the suffering that accompanies someone battling terminal illness and death, I’d like to think the afterlife is a reward to soothe that pain. A chance to connect with past souls, examine your lived experience and try again if you choose to do so. As a place that provides explanation and reason to the suffering that accompanies the unexplainable.
Maybe that’s why I haven’t seen anything yet. She’s too busy enjoying the warmth of something I can’t comprehend here in my body. Maybe it’s not that elaborate at all and she simply stopped existing. No pain, no feeling and no experience because she is nothing anymore.
It’s possible that by writing a story centered around my feelings about a lack of a sign from Lauren, that it will be the very thing that initiates a chain of events that leads to a powerful sign from Lauren. It’s also entirely possible the absence of a sign is the sign itself.
And maybe the signs are not coincidental license plates or address numbers connected to her. Maybe she’s not controlling the radio, so it just happens to be her favorite Taylor Swift song (Mean). Maybe we simply connect dots that do not really have a connection.
BUT what if there was never going to be a sensible sign because I am the sign itself. You are the sign too. The sign is employing the empathy, kindness, and grace she showed me and everyone she knew. The sign is going above and beyond for a stranger just because you can. If that’s the case, it’s been hiding in plain sight this entire time. I hope as you ride your own waves on Emotion Beach, you catch a sign that brings you solace and comfort for your person too.
Theme: Siblings
From the time that their sibling is diagnosed with a serious illness, the other children will need support. As the family dynamic shifts, new worries are present for both the sibling and the parent.
During this In the Room event, Dr. Plante discusses common challenges experienced by siblings and provides guidance on helping siblings navigate the complications AND joys that show up as a result. This conversation also highlights sibling strengths and resources that can help siblings feel seen and supported.
Theme: Siblings
There are moments when time collapses on itself. Perhaps that is what trauma does –it pulls my attention through time, obscuring the present moment with images and sensations from the past. Four years ago Alden was four-months old. Laying on his safari themed playmat, he was beautiful and content; but, he seemed not to see the bright and enticing toys hanging above him. Holding my breath I shook a rattle inches from his face. He turned his head, slowly. Then placing the rattle in his hand, I smiled as he reflexively grasped it; but he did not look at it. Moments later I winced when it dropped from his fingers and rolled away.
It was the middle of May, in 2020, when I brought Alden into his primary care doctor with my concerns. The pediatrician said he was fine. My motherly instinct intuited something the doctor did not, and on Memorial Day I brought Alden directly into the hospital where we received the life-changing news that he had been born with a rare brain malformation.
Today, I find myself lying on the floor of the nursery, next to another little miracle, Blake. He is almost exactly the same age now that Alden was when we learned Alden would live with severe disability. Blake makes soft sounds, as his legs dance in the air before his eyes. He looks at his toes with curiosity, and then swipes the air in an attempt to grasp them. It is truly awesome to witness his cognition and coordination develop with seemingly unprecedented speed.
Having spent hundreds of hours in physical therapy appointments with Alden, it is surreal to witness this new baby do something simple, such as bring his hands together at midline around a dangling toy, with such ease. It’s breathtaking. It’s worth celebrating. And, the juxtaposition is jarring. Despite softening with the years, there is a sense of loss again as I revisit my first memories of being a parent of a child with disability, when expectations did not align with reality. More than anything, I am acutely aware of just how hard Alden must work to move, and play, and communicate each and every day.
When I pick up baby boy Blake, here in June 2024, my hands suddenly feel into the past. Without my permission, I can sense the weight of Alden. In my mind’s eye I am holding his infant body. I can feel the way it stiffened, rigid against me; and I can feel my budding understanding that something was not quite right.
I place Blake in a bouncy seat and notice the smooth eye movement with which he tracks my movements as I walk around the room. I know this is one of the subtle developments that I tried to explain was lacking to the primary care doctor when she dismissed me as an anxious mom. I was anxious, and for good reason. By observing Blake develop week after week, it is
increasingly obvious how correct my instincts were. There is an uncomfortable clarity of what I sensed was missing, as I see and hear this baby’s movements and cooing sounds.
I have heard other parents of children with disabilities refer to their child’s developmental milestones as inchstones, smaller but very much measurable. We prefer the term Aldenstones, a completely unique unit of measurement. While there will continue to be moments when comparison steals our attention, we will honor each child’s story on its own terms, finding amazement in Blake’s Blakestones and Alden’s Aldenstones alike. My husband and I feel so lucky to have another child, to guide another journey. Alden’s disabilities and life-limiting conditions have absolutely changed the way we parent. We have
unsubscribed from conventional measurements of success, and found ways to cultivate gratitude. There are so many doctors appointments and so much to stress about. But we also celebrate more.
We trust that we will (in all likelihood) have one son who walks, talks, eats orally, and will someday become independent; and we will have one son who does not. Alden, our forever nestling. No doubt, each child has challenges ahead. These challenges, and the way each tests us as parents, will be quite different. But, interestingly, many of the joys will be the same – the joys of laughter and family, the joys of music and sweet treats, the joys of snuggles and bedtime stories. I take a good deal of comfort in these shared joys.
Theme: Siblings
It was on a Thursday, in our living room, when the phone rang. It was my son’s sixth birthday and just as we were preparing to leave for Chuck-E-Cheese the doctor called. A scan earlier in the week had revealed my daughter’s cancer had returned, spreading throughout her bones. He said words like: ‘metastatic disease’ and ‘resistant to treatment’. Words I didn’t understand. Words I would learn to never forget.
Two weeks later, I packed our car for her treatment in another state. I came inside to tell him goodbye, making promises I didn’t know I wouldn’t be able to keep. “Mommy has to start staying in a hospital with Izzy far away. But it will only be for just a little while and then things will go back to the way they were before.” But it was not just a little while and things did not go back to the way they were before. Weeks turned to months turned to years and she died nine years later. On a Thursday. In our living room.
People often say it must be hard for him now that she’s gone. I smile and nod, accepting their sentiment. But all I think is how hard it was for him when she was alive. All I think is that he grew up never knowing if his mom would be home and came home from school never knowing if his sister would be well enough to play. All I think is that he learned to read and write and tie his shoes while I sat in a hospital bed with a bucket for his sister to throw up in. All I think is that our lives were saturated in trauma and chaos and fear for all those years. And that it only went when away when she did. All I think is that it’s so unfair, but I can’t fix it for him anymore than I could fix it for her.
We do the best that we can with what we’ve been given. And we teach our children to do the same. The one with the diagnosis and the one with no choice. We tell them both the truth: that life is cruel and unfair. But we tell them the whole truth: that life is beautiful and sacred. We show them that to be fully alive means to experience all of it.
After my daughter died, I had another conversation with my son. I told him that I would find a way to be okay and that I would do it for him. He looked me in the eyes with the heart of someone that has known only selflessness and said: “thank you – but I want you to find a way to do it for you.”
There are some things we cannot teach our children. Things they can only find in the absence of what should have been. For my son, where security and innocence should have grown, resilience and compassion blossomed in their place. And while I would give anything to make our story something that it wasn’t, how dare I take from him what he cultivated from what it was.
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Molly is a Writer, Speaker, and End of Life and Grief Coach in the Indianapolis area. She spent a decade in Pastoral Care before spending the next decade caring for her daughter throughout her cancer journey. She has combined both experiences to help others navigate unimaginable journeys. You can find her writings and teachings on IG at: the.grief.writer, or online at: mollymattockscoaching.com.
Theme: Siblings
Children’s literature can offer a gentle and developmentally appropriate way to address complex topics – such as death and grief – with children.
Through narrative frameworks, imagery, and relatable characters, children can better understand the natural cycle of life and how to cope with difficult emotions. Reading books with trusted adults can facilitate conversation and strengthen relationships.
This event included a conversation with children’s librarians Sylvia Tag and Thom Barthelmess and professor Marie Eaton on how caregivers, clinicians, librarians, and teachers can integrate literature into the lives of young people to tackle difficult topics with care. Joining them was mom, Sarah Casey, a life-long lover of books of all kinds, who believes strongly in the power that stories have to connect, guide, and help us make meaning throughout our lives.
Theme: Siblings
Welcome back.
Now that we’re in the thick of winter, the constant 72º and partly cloudy weather here on Emotion Beach doesn’t sound too bad, does it? (When you create the analogy, they let you control the imaginary weather too.)
As a refresher, I left off in the fall with a comparison to what my experience has been like as the older brother of Lauren, who passed away from pediatric cancer in 2017 days after her 10th birthday and days before Christmas.
Given these circumstances, there’s pretty much a daily red or double red flag posted outside of Emotion Beach warning of viciously choppy waves of sadness, grief, and anger during the month of December.
While it’s expected that anniversaries and the painful memories that surround them would be difficult, there have also been plenty of unexpected difficult days that I’ve encountered along this journey.
One situation, or question rather, has stumped me more times than I’d like to admit and is a guaranteed metaphorical double red flag.
How many siblings do you have?
Before the fateful day of Lauren’s passing, the answer was glaringly simple. I have three younger sisters. Duh. Since that day however, I’ve wrestled mentally with how to answer. Do I say three, validating Lauren’s existence, but baiting myself into having to explain that she passed away and risk follow-up questions? Do I say two, making it easier and technically true, but linger with my answer internally hours after being asked?
As a way of coping, I’ve clung to literal interpretations of words surrounding how to describe Lauren’s passing. For example, to the disdain of my family, I was referring to Lauren in the past tense mere hours after her passing.
Currently, I live in a state of conflict with how to answer the sibling question. There is a side of me that wants to agree with the extremely literal interpretation. I have two younger sisters who are alive, therefore I have two younger sisters. At the same time, the other side of me knows deep down I will always have three younger sisters and Lauren will always be a part of my family regardless of her position in life or death.
This example, a single wave on Emotion Beach, illustrates the many mental hoops that I have to jump through to answer something as small as quantifying the size of my family. The size and scope of grief is immeasurable and the way I view the world and interact with it are vastly different because of it.
Witnessing Lauren fight courageously for two years, always believing she would eventually be okay, and watching life slip away from her body wildly reshaped what I view as important or worth emotional investment. Things like high school crush dramas or gossip amongst co-workers are trivial in my mind because I have seen and been through exponentially greater emotional events. I know the true meaning of grief in all its depths. The lesson was magnified even further since Lauren was the first ‘real’ experience I’ve faced with the death of an immediate family member.
Another thing Lauren taught me without ever actually trying was the power and infectiousness of a relentlessly positive attitude. She did this through:
- Her smile and kindness to the hospital staff and nurses in the face of a week-long chemo treatment.
- Her inclusion of my Aunt Kathy and Uncle Jerry on our Make-A-Wish trip or my siblings and I being included in her gifted experiences because she was always thinking of someone else.
- The seemingly impossible wisdom she held knowing the position she was in at the age she was and handling it with the grace she did.
I’ve tried taking these lessons and acts of kindness Lauren showed in her limited time and reflecting on them in my own life. The core idea is to approach any situation with a level head and an empathetic heart. And always remembering that you might not know the source of someone else’s anger and pain.
Maybe it’s something as simple as flashing your lights instead of honking when the car in front of you won’t move. Maybe it’s something bigger. That’s for you to decide. The only thing to keep in mind is that an act of kindness can open a lifetime of opportunity.
Theme: Siblings
Hello! My name is Connor Graver and I am a 22 year old finishing my Bachelor’s degree in Political Science in the Chicagoland area. The consequential event that put me on a collision course with CPN was the diagnosis and eventual passing of my younger sister Lauren to pediatric cancer in 2017.
If you’re a regular CPN reader, my last name might look familiar as I am the son of fellow CPN blogger, Amy Graver. I have a niche goal and area of expertise that I am excited to stoically provide to CPN: it’s the sibling experience of a life threatening pediatric disease. Siblings can come in countless combinations which entail different social dynamics and norms. For the Gravers, I am the oldest along with my younger sisters Claire and twin sisters Lauren and Emma.
For my first post, I want to elaborate on a seemingly insignificant and arbitrary moment – a moment that has since come to represent the chasm of before and after in my life.
It’s myself, the summer before I entered high school, sprawled across our family room couch playing Madden 15 on my Xbox 360 -not a care in the world.
That’s it.
Within minutes, I’ll receive a call from my Dad frantically explaining that Lauren’s checkup went awry and he’s coming home to pack a bag for the hospital. We hang up and I divert my attention from the game in front of me. This phone call and moment will be the snowball that triggers the avalanche of diagnosis, treatment, recovery, pain, triumph and heartbreak that defined Lauren’s courageous two year battle.
I grip this moment so tightly because I would come to realize it was the immediate and sudden transition from childhood to adulthood, although that wouldn’t be clear until the dust had settled. My perspective and world would never look the same again as I was forced into roles and responsibilities I didn’t want but had to do for my family.
I was forced into the role of make-shift parent since one would have to be with Lauren at the hospital during extended stays for treatment. Unlike my sisters, I wanted and needed to know every detail of Lauren’s treatment as a way to cope and handle what was in front of me.
As a result, I struggled socially — feeling years ahead of my classmates’ emotional maturity. I began battles with depression and anxiety that last to this day. All of these consequences stemmed from Lauren’s diagnosis, and I still feel sheepish saying I struggled because I wasn’t the one fighting the disease.
From the start of this ordeal, it’s as if a wave machine was turned on without ever planning to turn off. Each day, hour and emotion that arise is unique and different but flows like the rest. In years past, the water was considerably more choppy with waves like “Will Lauren survive?” and the subconscious rip current of the start of my depression.
Later on there would be the crashing and high tide of her passing and the aftermath of that.
So as I sit here, now as a regular at the Emotion Beach (to take this analogy to the next level), I’ve learned not to fear the waves or even fight the waves but to sit back, observe and enjoy. Silver linings I never would’ve expected will start to show, just like this opportunity to write to you.
We’ll talk again in December.
Theme: Siblings
The mother and father of a 21-year-old medically complex son and his 13-year-old brother talk about what they admire most about their two boys. For Alex, the brother – it’s his empathy. For Frankie, it’s what a fighter he is.