Expert Article
What About My Healthy Child? Am I Doing Enough?
A Counselor and Sibling of a Brother Born with a Type 4 Laryngeal Cleft Shares Her Personal and Professional Perspectives.
By Heather Bachman
MS, LPCC, and the Sister of Two Seriously Awesome Guys
Watching the big sister character, Via, in the movie “Wonder” was the first time that I saw an accurate representation of someone like me. When describing life with a medically complex sibling, Via said, “August is the Sun. Me and Mom and Dad are the planets orbiting the Sun.”
That short line in a movie, something most people probably forgot within seconds, was quite a head nod and “yep” in agreement moment for me. It was an accurate statement and honest visual that struck home and finally gave me the words to express a small piece of my experience as the big sister to a brother born with a laryngeal cleft.
My sibling journey started at such a young age and 4-year-old me had no clue. I thought what was happening around me was normal. Sporting a 90’s sticker badge of honor with the word “hero” stuck to my chest, I proudly walked the hospital halls to visit my little brother in the NICU.
A praying bear beanie baby always kept him company in the corner of his tiny plastic bed. Lying still, he was surrounded by tubes, machines and nurses who greeted me. I thought this was normal because it was my normal.
I knew no different other than first and foremost, this was my brother and I was finally a big sister.
My parents have shared that six weeks after Markus was born, we visited our friends in the hospital who had just had a baby. As we walked into the hospital room, I saw the mom smiling, lying in bed and holding the baby in her arms.
Confused, I asked,“Where are the tubes?”
The new mom in bed talked about taking her baby home the next day. My mouth dropped open. This concept shocked me and I whispered, “They get to take the baby home?”
At that point my parents realized that I believed what our family was experiencing was typical, something to be expected.
Before CaringBridge and social media, my dad would keep people updated via email. In one particular email, my dad wrote: “Now our normal includes things like feeding tubes, trachs, barely audibly raspy sounds, and visits that end in leaving our baby behind. These are all things that Heather now views as normal, too. Which is really messed up. (October 18, 1999).”
I became a sister for the second time when my youngest brother, Noah, was born. At the age of 11, I got to experience something completely different. Mom was in the hospital for only 1 day. Little brother Noah came home right away-no tubes, no machines, and no nurses greeting me by name.
Being a sibling is such a unique and special role.
Oftentimes it’s found that special people in our lives shape what we do with ours, and that’s exactly what has unfolded in my personal and professional life. The profession of child life and clinical counseling became my passion.
Being a sibling of someone with medical complexities comes with challenges and joys. During graduate school, I first heard the term ‘glass child syndrome’. Although not a medical diagnosis and origins unknown, this term gained traction in 2010 through a TEDx Talk by Alicia Maples.
Alicia shared that a glass child has a sibling “who requires ongoing attention and care, above and beyond what we would consider normal parenting.” These parents are consumed with the needs of the sibling and when looking at the healthy child, “they look right through us as though we’re made of glass.”
Just like Via in “Wonder,” Alicia Maples summarized an entire life experience in a phrase.
“So many times I have found myself trying to overachieve, overcompensate, and even in my teen years act out just to feel seen. I vividly see it in my old self. I even see it in my current self when packing up after visiting my parents. I typically (accidently) leave something behind but then joke “it’s just so you know I was here.”
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To no fault of my parents, I understand. Medical care cannot wait. Markus’ wellbeing cannot wait and often took priority with little to no room for flexibility.
Our plans are always written in light pencil, never ink. A play date scheduled with a friend who turns out to have a sniffle is cancelled. My events were not always attended by both parents because my sibling needed support or was in the hospital. I am so fortunate to have had a strong presence of multiple people who stepped up in our family’s lives to fill in the gaps. I have, and will continue to say this, the best two sets of grandparents who never let me feel alone.
As I’ve gotten older, I have connected with people who accept that as soon as we step into my parents’ home we wash our hands. They understand and embrace that life with me also means life with Markus. Raising a child is no small feat, and raising a medically complex child along with healthy children takes a literal village.
However, the joys are SO worth the challenges. Birthdays are so much sweeter as we don’t take a single one for granted. Graduations and accomplishments are equally emotional. Belly laughs are treasured. Time is truly precious.
I notice this theme throughout my life that seems to stem from growing up noticing the small things. Having a brother born with a laryngeal cleft has forced me to grow and molded me to be compassionate, understanding, and inclusive.
Having a medically complex child does not mean your other children are doomed (thank goodness). They can grow to be open, compassionate, and accepting advocates for a full life for themselves and their sibs.
Parents still may ask themselves that lingering question, “Am I doing enough for my healthy child?”
If you are even starting to ask yourself this, this tells me you are. There are many aspects of wellbeing, and seeking to gain additional insight, understanding and new ideas to support your healthy child shows you care.
I don’t think there will ever be a perfect presentation of ‘sibs of medically complex kids made simple’ as our space is so unique and ever changing.
In March 2017 I had the privilege to sit on a sibling panel with Don Meyer, the creator of SibShops, an international program developed for children and teens who have siblings with medical issues or any type of disability.
I was asked numerous questions by seeking parents including:
• How do we support our healthy kids?
• How do we not have them forget we care and love them?
• What can we do?
I spoke with my youngest brother recently, as his role of younger sib to Markus is different than mine of the older sib. Much of what he shared with me was similar to my thoughts and feelings. It was interesting to see how his perspective as a sib has changed from a little guy to now a 19-year-old.
What Can We Do To Better Support Our Healthy Kids?
From a Sibling Perspective:
Check In. A phone call, a facetime, an “I love you” text, a hug, a small smile and a “how are you, really” can significantly reduce a worrying mind. As sibs we understand that right now Mom and Dad need to focus on our brother or sister. When things are back to stable, a form of acknowledgement is then possible. My brother has spent numerous birthdays and holidays in the hospital. Sometimes my family could be together, but many times we were apart. One Christmas my brother was hospitalized in Ohio and my parents were there with him. My youngest brother and I were in North Dakota. That was hard. Words don’t make those experiences better, but at least we then know we are on each other’s mind and that our parents are thinking of us like we are them.
Share. Have that conversation with your healthy child and ask how much they want to know. Thoughtfully share developmentally what makes sense. Growing up, I wanted to know everything that was going on with my brother. Although not always helpful, I didn’t want to be left in the dark and wanted to be informed. My youngest brother was the complete opposite. He would rather know very, very little, just enough to have a vague idea of how Markus was doing. If kids aren’t ready to know, allow them the freedom to share that, and if they are ready to know, be ready for questions. If you don’t feel equipped to have that conversation, I encourage you to connect with a child life specialist. These professionals are specifically trained to merge the medical and child development world. You can also ask your own questions to a child life specialist to help expand your medical vocabulary in kid terms.
Sharing with your healthy child is important, but so is sharing within their world. I was unaware that my parents would notify the school and after school program what I was currently experiencing so that at least someone in that environment would be aware if I was more emotional or distracted than usual. In hindsight, this was helpful because I did not have to explain what was wrong multiple times.
Show Your Own Emotions. Bad things are supposed to hurt. Kids aren’t supposed to be sick. Families aren’t supposed to be apart. My parents were good at showing the emotion to a tolerable level where I knew what space to be in. Even if few words are being said, I could see it in their faces. It’s ok to feel sad. It’s ok to feel scared. It’s ok to ask questions. It’s also ok to be human and not have it together. And sometimes it’s one foot in front of the other and telling each other no matter what, we will be ok.
Hold Space. Be present without “fixing.” There are so many questions and unknowns. Bottling up the process of a laryngeal cleft, navigating the medical world and figuring out life itself makes growing up tricky. Glass child syndrome kids are more likely to say “it’s fine” when things aren’t just so they don’t add any more to their parent’s plate. We are more likely to grow up faster not because we want to, but because we have to. Glass children are more likely to experience anxiety, depression and PTSD. There are moments when I still struggle seeing the flashing red lights of an emergency vehicle and the thought comes to mind is it my brother. It’s ok to not have the answers but just hold space.
Give Yourself Grace. We sibs may not recognize it at a younger age, but you are trying to do the best you can in the moment. Balancing the health of your child, doctors visits, hospitalizations, school, rest, meals, jobs, your own emotions, relationships, therapies, the list is never ending. This balancing act is not for the weak. Find professional support for your child and also yourself if needed. Find your community. Find your support and love them hard. Give yourself grace. This is hard. We (sibs) see you and we love you.
From a Clinical Counselor Perspective:
Be Intentional. In the clinical world, there is a therapy modality called Parent-Child Interaction Therapy (PCIT). A key component of PCIT is an intervention that I love the most called “special time.” This is a 5-minute, uninterrupted intentional form of play between a child and a parent. The parent follows the child’s lead in play and engages in uninterrupted interaction and verbal praise. This time, although short, has shown improvements in a child’s ability to self-regulate and improve positive perceptions of oneself. As a parent, you are paying attention, and 100% present with your child. Nothing else, no distractions, just one on one and fully engaged. Five minutes, 300 seconds, can make a huge difference in feeling seen not only as a sibling, but as a child.
Find Support. You are not alone. The power of connection is irreplaceable in a place of uncertainty. For your healthy children, get them connected to your local SibShops. It’s typically held at a hospital by child life professionals and other trained professionals. I was lucky enough to attend the very first SibShop at Children’s Minnesota. For what truly felt like the first time, I was around kids like me who understood. This opportunity fueled a fire in me to pursue a child life education, a therapist career and become a first generation SibShop facilitator.
Take Care of Yourself. You can’t pour from an empty cup. Self-care looks different in different moments. Maybe in the healthy moments it’s allowing for a day away to rest and reset. In the not-as-healthy moments, it’s a walk to the Ronald McDonald House or a quick breath of fresh air outside the hospital walls. It is easy to become tunnel visioned in the here and now, but it’s also important to not neglect your own well-being.
It is a privilege to be a sib and to love my sibs as hard as I do. It is also a privilege to be in a profession where I am able to meet families exactly where they are. I encourage everyone to continue cultivating relationships and give yourself grace. We are all learning as we go and doing the best we can.
If no one has told you today, you are doing a good job.