Category: Anticipatory Grief
My family spent this past year and a half existing in a space between living and dying. My youngest daughter, Talia, was diagnosed with Tay Sachs shortly before her first birthday. The milestones that she hadn’t yet hit, like rolling over or sitting up, I now learned she would never reach. Her brain would be slowly overwhelmed with a buildup of lipids that were supposed to be slowed by a key enzyme that Talia was lacking. She would lose all of her remaining abilities — the power to move, to smile, to eat — until her body one day would no longer be able to function. Regardless of my parental or medical decisions, the outcome would be the same. She was a living child with a terminal diagnosis for whom death was certain, but the timing was not. We, her family, existed in a world adjacent to grief, separated from those joyously living in the present.
We lived the unique experience of anticipatory grieving. While Talia was alive, I tried to write about the lessons I was learning and reflect on the hidden blessings of our terrible knowledge. I could never complete this piece because of how I feared that anything I thought I had learned would somehow be immediately invalidated once Talia actually did pass away. I kept waiting to write; only now, two months after her death, can I look back and know that the time I had to prepare for her death provided an invaluable cushion to catch my fall.
To the outside world that didn’t know of her diagnosis, Talia appeared to be a calm, content, sleepy child with a wild mane of hair. She was all of this to me as well. Yet I carried the hidden burden of knowledge that each smile could be her last and that her “sleepiness” was due to her inability to hold her eyelids fully open. The disconnect between Talia’s happy baby appearance and the weight of knowing her true condition was one of many many issues I had to learn to deal with. It was a challenge for me to reconcile the image of her appearing healthy from the truth of her condition. Those around me struggled as well.
In the immediate aftermath of the diagnosis, I grieved deeply. I grieved the impending loss of Talia, but more so I grieved the loss of the image of the family I worked so hard to create. I grieved for the loss of innocence of my two other young children. I grieved for my own loss of innocence. As I grieved, I was also staring at Talia, a calm seemingly content child who would stay a “baby” forever, who didn’t know the world she had lost. She still wanted to be held by me, to nurse from me, to receive love from me. How could I do it I wondered? How could I pour my love into something that would leave me so soon?
For a time, I detached from Talia as though she were simply a ghost living beside me. I spent a few weeks post diagnosis staring at Talia and trying not to see the adorable baby in her. I tried to see her as nothing. I tried to separate and dedicate myself to not making any new memories with her. I wanted to keep her siblings away so that their bond wouldn’t grow stronger. I believed that any time spent loving her now would only make the loss of her harder down the road. In the end, this road only made me feel empty. In preemptively grieving Talia, I dehumanized her and therefore I dehumanized myself. The love I feel for her and the connections that my children would make with her build us all up to be deeper and truer human beings.
After finding the strength once again to focus on building experiences with Talia and our family, I tried to live only for today without fear of tomorrow. I tried my best to block out my fears of decline and enjoy each happy smile and well-earned laugh in an isolation chamber in my mind, separated completely from the other dark corners. This strategy also didn’t work. It felt false, like I was living in a state of denial. If I ignored what I knew to be true, then the fall after she was gone would be as hard as if I had never known anything was wrong.
The method that ended up finally working for my family and me was to look reality hard in the face, accept it and then move forward with the present and the future fully in focus. I loved Talia each and every moment of her life, and I made sure to capture every laugh and smile I could on camera knowing it may be her last. I allowed myself days where we were purely happy and her disease was far from my mind, and also days where the pain was so much that I took breaks from caring for her to maintain my own well being.
I forced those around me to take a similar approach. I didn’t let anyone around me get away with magical thinking, miracle wishing or rewriting of the past. I reached out to and accepted the support of a host of wonderful people from family to neighbors and great friends, while all the while insisting that they not sugar-coat our situation or indulge in false hope. I also made a point of refusing to be deified, knowing that the title of “hero mom” wasn’t one I wished to embody.
A large part of the reason I managed those around me in this hyper-realistic manner is because I was consciously training us all for the inevitable fact that this period of my life as the parent of a dying child was going to end at some point. I knew that I needed to protect myself and my family from the shift from caregivers to grievers and that maintaining normalcy in the face of the abnormal was the best way to do so.
Protecting my two healthy kids was also of paramount importance to me and I’m grateful to have had the time of anticipatory grief to help them understand death proactively rather than having to teach them that painful lesson in the immediate aftermath of loss. There are some parts of Talia’s illness that they understood with minimal questions, like the fact that she wouldn’t develop and would stay a “baby” forever. Explaining death was more abstract and only truly made sense to them after she was gone. I likened it to discussing pregnancy to a young child. Regardless of the evidence of the mother’s growing belly, it’s only after the baby is born that the child understands the true impact of the change. So too, even as my children saw Talia become stiller and more silent each month and we had discussions about how her body was shutting down, it wasn’t until she had died and was no longer in our home that they really understood her absence to be a permanent one. The time we spent talking with them helped ease the transition immensely, as did the fact that we did everything in our power to continue, hiking, playing board games, and laughing rather than focusing on dying. The more attention poured into them while we were “whole”, the more, I believe, we will survive as a family unit now that a part of us is missing.
I also used the time I had with Talia to run through post-death scenarios in my head. I had the time to prepare for what life would look life after Talia is gone. How I would answer the seemingly easy question of how many children do I have? How would we fill out family tree assignments at school? Time spent thinking about these questions didn’t stop the pain, but with practice these questions became normalized in my mind and therefore easier to answer.
I played a delicate balancing act of living for today, but not forgetting about tomorrow. If you knew your loved one would die in a year, you would want to live each day like it’s your last. I find that requires an emotional and physical energy that is impossible to maintain. I prefer to live each day as I did the day before, live as much in the moment as possible while also not forgetting that this moment will pass. The good and the bad times alike exist for only fleeting moments that morph into something new. The hell of sleep training a baby, for example, is a blip in the timeline of life, yet an excruciatingly long blip to live through. The time spent playing cars on the floor with your son at rapt attention is a fleeting moment all too soon to be replaced by the rigors of schoolwork or arguments about video games.
I learned to live simultaneous truths. My child is going to die/My child isn’t dead yet. My children are all forming a wonderful bond/That bond may make the pain of loss harder to overcome. It’s was very important for me to not allow myself to forget the reality of Talia’s situation but also not let myself get dragged down by it. I feel deep sadness but try not to allow that sadness to remove me from being present. My emotions rise, fall and transform. As they come up I acknowledge them, feel them and then let them flow through me knowing that something new will take its place. I can’t control what comes downstream, I can only try to manage the flow.
Category: Anticipatory Grief
If you had asked me how I felt when my 6-month-old daughter was diagnosed with a fatal disease and we learned that she would die in early childhood, I would have told you: I feel like I’m about to fall through the floor and I can’t believe I’m actually still breathing.
If you had asked me what I was worried about, I would have told you: I’m worried she is going to suffer, I’m worried about my older daughter, I’m worried my marriage can’t sustain this, I’m worried I’m going to fail everyone.
But if you had asked me what I needed, I wouldn’t have had an answer. I might have screamed at you, “How the hell do I know what I need?! I need this to be a bad dream from which I will wake up.” Or, “I need a cure. NOW.” If pressed, I would likely have said, “I need help addressing my feelings and my worries.” In short, I had no idea what specific help I needed or might need when the shock wore off (if it ever would). That’s because I had fallen into a scary foreign place with no preparation and no guide book. I was disoriented and felt powerless. I also didn’t know what to say or where to turn: not only didn’t I speak the language of this land, I didn’t know if there even was a language.
And herein lies the kernel of the challenge: In these early days after diagnosis, it is essentially impossible for parents to articulate what it is they need, beyond a treatment or cure for their child, because they don’t understand anything about where they are or what they need to do. They know only that they feel sad and afraid and worried and alone and lost. And as they arrive at new places along this path they’ve never travelled, such as a decision they have to make or a new plateau for their child, they are disoriented and word-less all over again.
I have learned from one of my smart and dear friends that in the business world this is called an unarticulated need.
It helps to understand what an unarticulated need is by looking at its opposites: for example, Thirst. When we are born, we learn early what thirst feels like. We understand it as a natural urge and our parents give us the language to say how we feel: “I’m thirsty.” We also learn that there is an immediate solution to this feeling, “I need a drink.” And then, as we get older, we even learn to be particular about the drinks we seek, as in, “I would like a Coca-Cola.”
We’re even taught how to respond to typical potential emergencies. We learn the Heimlich maneuver in the event someone is choking. We learn CPR. We learn how to respond to a fire: Call 911, walk to the nearest exit, or drop and roll.
By contrast, having your child diagnosed with a life-threatening illness is unnatural and extreme. Therefore, no one has taught us how to describe the alien feelings that arise. And no one has prepared us for how to respond to the emergency.
Courageous Parents Network is all about responding to that unarticulated need, about offering the support and help families need, even as they don’t know exactly what that is. We are founded, directed and staffed by parents who have cared for children with life-limiting illnesses. We have a sense of what parents need because we have been there. And now we’re learning how to actually frame what we offer so that parents who have been blindsided recognize the offering as help they seek, even as they don’t have the language to name it.
Part of this learning has involved talking with two different groups of people: 1) medical providers who work with families but have never had to ‘market’ their help (when a child is sick, parents know to seek out help from medical experts); and 2) marketing experts who know a lot about human behavior but have never worked with parents of sick children. (Side note: I am not talking about people who work in marketing departments at hospitals, promoting treatments and cures. Courageous Parents Network is interested in what happens beyond and on the edges of treatments and cures.)
We recently learned of 5 types of support that matter to people, which we thought would be interesting to share with our followers. Why? Because the more knowledgeable and articulate you can be about your experience as a parent caring for your child, the more situated you will feel and the better able you will be to advocate for your child. In short, we want to give you the language for the new land in which you are operating. These 5 types are:
- Emotional support: feeling understood and accepted no matter what you are feeling
- Informational support: being directed to learning or finding information
- Tangible support, practical support: accomplishing tasks (for instance, getting a ride somewhere or receiving a home-cooked meal)
- Self-esteem, affirmational support: feeling valued (for instance, at work, in family, in community)
- Belonging support: feeling part of something, a connection to a community
- from the Benson-Henry Resiliency curriculum for Stress Management and Resiliency Training (SMART). Benson-Henry Institute for Mind and Body Medicine at Massachusetts General Hospital.
Being an online community, we can’t offer help with meals or shopping or rides. However, Courageous Parents Network is committed to the other four of these five:.
- Emotional support – in videos, blog posts and podcasts, which feature the voices and perspectives of fellow parents, parents can see that their emotional challenges are shared by others and can benefit from the insights of parents who have gone before.
- Informational support – guides and videos provide practical coping tips and strategies from experts and fellow parents
- Self-esteem, affirmational support – through seeing the example of other parents who have done the hard work in this strange land, parents can imagine and believe that they can do it too; better yet, they can see the strength in what they are already doing. Courageous Parents Network celebrates all that parents do for their children. We are all about the validation.
- Belonging support: CPN is about helping parents see that they are not alone; rather, they are part of a large virtual group of amazing people who share similar struggles and triumphs. And at the concrete level, CPN unites parents in different states who share a commitment to advocating for palliative care and the needs of families and children.
So, what sort of support do you need? We hope we can help. Please be in touch. connect@courageousparentsnetwork.org
Category: Anticipatory Grief
Connie Yates’ final public statement last week, to her infant son Charlie Gard, shortly before he was taken off life support and died, was, “We are so sorry we couldn’t save you.” It is a parent’s natural instinct to do whatever is possible to save their child. However some conditions, diseases, situations are unfixable. These diseases humble us: progressive diseases that move too quickly (especially in young children), for which there is still no effective treatment in sight; or conditions that in their totality are too devastating, where life cannot be sustained without interventions that can be physically burdensome and, for some children, may cause physical pain, as it was for Charlie.
By dangling an unproven treatment (not even in mice!) in front of parents whose infant child was hanging on by a thread, the physician in the US all but ensured that at the end of the harrowing journey there would be emotional, psychological and spiritual suffering on the part of Charlie’s family and the medical providers tending to the child. A sense of betrayal, heartsickness, anger and bone-cutting grief.
Had the family never been offered the illusionary hope of life-saving treatment against all odds, they may have been able to focus on something very proactive that parents can do: give their child the best life possible for as long as the body and brain would allow.
Acceptance is not the same as being OK with the thing that you are accepting. And it is not the same as doing nothing. It is quite the opposite. Acceptance opens up the opportunity to reframe and focus on taking action in other ways that feel productive and empowering. Consider Sarah and Steve, a couple we have come to know (and love) at Courageous Parents Network. Their daughter Emerson was diagnosed in infancy with the most aggressive form of Gaucher Type 2. Steve and Sarah appreciated that when the doctor delivered the diagnosis, he gently also told them that there was no promising treatment nor research in sight, and that Emerson would likely die by age three. In his interview with CPN, Steve says, “There are stories where there is a miraculous discovery, but I think there is so much background of those miraculous discoveries, so much prior work that’s not ever highlighted in those stories…I felt that the best thing I could do as a parent is give her the very, very best life that I can in the time that we have.” Sarah adds, “The time that the research might take and the pain and suffering she might go through, and the unlikelihood that for her it would be the cure, we just wanted her to have the best life.” And so they focused on giving Emerson wonderful experiences: eating foods she liked, going on a horseback ride, sitting on the stream, feeling the sun on her face at the beach.
Sarah and Steve’s perspective was further honed through pivotal conversations they had with their daughter’s palliative care doctor who helped them decide that not intervening with aggressive medical interventions was, in their case, the most life-affirming thing they could do. In another video excerpt, Sarah shares: “[The physician] said that in the medical field there are lots of things that we can do and keep doing to keep a physical body going long beyond when it otherwise would, and some of them can be painful. He said, ‘You know, maybe you could think of it as what you’re doing is you’re actively protecting her from some of the things that could be done that wouldn’t be the right things for her.’ For me, this shifted [our] thinking in a way that was very helpful.”
Emerson lived happily and comfortably for 16 delicious, love-filled months. Since her death a little over a year ago, her parents are experiencing deep deep sadness, and they always will. But in the end Sarah and Steve have no regrets about the decisions they made for their daughter. Grief is not the enemy. It is an inevitable and natural part of the process. Regret is the enemy. It’s corrosive. It is the difference between clean pain and dirty pain. I fear Charlie Gard’s parents will be experiencing dirty pain: they will associate their son’s life with legal battles, a crazed media machine, and fighting for the hope of a treatment that was a cruel illusion.
One profound lesson of accompanying a beloved child on this journey is that hope comes in many shapes and sizes. Sometimes the best hope is not the hope to save our child but giving our child a comfortable life, well-loved.
Category: Anticipatory Grief
My husband and I have been married for 17 years and we have two children, as well as a baby in heaven. Our daughter, Sara, is fifteen years old, and at age two she was diagnosed with Rett Syndrome, a rare disease. My husband has a small business and works his own hours so that he can be here with us more and also so he can take time off when Sara is in the hospital or having a hard time. I stay home and do office work for him and his business.
Life with Rett Syndrome has had its ups and downs. Sara was born seemingly healthy with no hint of any problems. She was eight pounds and two ounces of pure perfection. She had soft, fair skin, bright blue eyes, dark brown hair, and little pink lips. She was born holding our hearts in her hands, we were in awe and in love with her. We brought her home and all was well for about four months. Then she started having reflux and projectile vomiting just about every time she ate. The doctors thought she was lactose intolerant and started her on a lactose-free formula which made me sad as I was still breastfeeding her. But the formula did seem to help. Around six months old, we realized that she wasn’t doing things she should be doing. Her doctor said that some babies simply take longer, not to worry. By eight months old, she was diagnosed with a global developmental delay and had started physical and occupational therapy.
We call the period of time between eight months and two years old the “doctor shuffle”. She started having muscle weakness and therapy simply wasn’t helping her. She was crying a lot and nothing seemed to calm her. It was really hard. During this time, we were being sent to so many different specialists for so many tests that yielded no answers as to what was causing our baby so many problems. We were finally referred to the Greenwood Genetic Center, and by the end of our first appointment, the doctor had an idea of what may be going on. He drew some blood from Sara and sent it for testing. A month later it was confirmed that she had Rett Syndrome. When the doctor called to give us the news, he made an appointment for us to go in and learn about the condition and what it meant. He told us to bring anyone who would like to learn more or just be there for support.
The day of that appointment is unforgettable. My hubby and I, Sara, her grandparents, and her aunt were there. We sat together in this big room with a group of doctors. They told us her diagnosis. Rett Syndrome encompasses the symptoms of Autism, Cerebral Palsy, Parkinson’s, Epilepsy and Anxiety Disorder… all in one. The doctors gave us a brief genetics lesson explaining there is no known cause of Rett Syndrome. They told us the symptoms and the difficulties she would face. They outlined the things she would struggle with and the things she would likely never do. Rett Syndrome causes seizures—sometimes mild, sometimes uncontrollable—scoliosis, muscle weakness and stiffness, feeding problems, weak bones, loss of skills, loss of hand use, loss of speech, apnea, hyperventilation, anxiety, tremors and more. They warned that these symptoms would start soon – and they did.
The doctors told us that Sara may live into her teens or early twenties, or she could pass unexpectedly without warning. They told us there was no cure, to take each day as it came and to treat issues as they arose. If we felt like we couldn’t handle all of this we could place her in a residential facility.
We left there feeling crushed and overwhelmed, uncertain of our daughter’s future – did she even have one? I immediately felt like I had lost my daughter, like I was grieving a death that hadn’t yet happened. In a way I was. I was grieving the loss of hopes and dreams for her. Walking her into class the first day of pre k, hearing about her days at school, hearing her say anything at all, watching her play at the park, sleep overs, first crushes, first dates, prom, sending her off to college, a beautiful wedding, her having her own children one day – all gone. Gone and replaced with endless doctors appointments with varied specialists and therapy appointments and praying she is still with us each morning.
Time went on and somehow we got through those first few weeks, then months, and now years after the diagnosis. We realized that while, yes, she has Rett Syndrome, she was still the same precious child that we had had before the diagnosis and all we could do was love her like crazy and do all we could to help her. Shortly after that unforgettable meeting, as the doctors told us, Sara lost the ability to feed herself, lost the few words she had and stopped rolling over. Now 15 years old, Sara has never sat up on her own, never crawled, or stood or taken a step on her own. She has had fourteen surgeries in her fifteen years. She had her feeding tube placement, gall bladder removed, hip surgery, and multiple back surgeries because she has severe scoliosis and the curve of her spine was so bad that it was squishing her stomach causing vomiting and also restricting her left lung and its growth. In 2009, we were told that she needed back surgery or we could “let nature take it’s course”. We opted for surgery.
They placed two rods in her back to hold up her torso and relieve the pressure on her stomach and lung until she was old enough and big enough to do spinal fusion. The surgery went fine, we thought, but one rod had gotten infected and had to be taken out. They then had to do a small surgery every six months to expand the rod a little because she was growing taller. Finally, in 2015, Sara was able to undergo spinal fusion surgery. There were complications with pneumonia and MRSA afterwards which kept her in the hospital for three weeks. She recovered and has thankfully been doing well ever since.
I think one of the hardest parts of life with Rett Syndrome is Sara not being able to speak. She can’t tell me what is wrong, if she is hurting and where, if she is tired, what she did at school, what movie she wants to watch or if she simply has an itch. The doctor appointments seem constant but we are thankful that there are specialists who can help her.
Sometimes it is hard for my son, Logan, as well. When Sara is in the hospital I always stay with her and he stays with his dad or his grandma. We miss each other a lot. We also can’t just get up and run out the door for a playdate or a trip to the park. Our plans revolve around if Sara feels up to going out, and is the place accessible? It is HARD. Logan is very understanding though. He may be let down a little, but he understands. He already has such a kind heart and loving personality. We hope that by him growing up with Sara, he will be a compassionate adult and realize that he is blessed and hopefully he will want to help others.
Rett Syndrome is a horrible condition that has caused many problems for Sara and complications for our family. Of course we wish it was otherwise. Yet, this child continues to defy the odds. Sara also has a lot in common with other typical fifteen year old girls. She loves to go shopping, enjoys school, likes cute clothes, loves music and movies, enjoys visiting friends and family, likes cute guys and is a shameless flirt. Despite all she has been through, she is a happy young lady most of the time. She is tough as nails, a true fighter, and the sweetest child I have ever met. Yes, she has days where she is fussy and cries, but most of time, Sara is content, smiling, and even laughing. She gives some fantastic hugs and kisses that melt your soul and turn the worst day completely around. I often tell her that her smile is so sweet that when God was making her an angel must have been walking by and He used the angel’s smile as His inspiration for her smile.
Sara has brought so much goodness into our lives that clearly outweighs the struggles and hard times. She is a blessing and a joy.
Toyna Hanna is mom to Sara, Logan and a baby in heaven. Sara, 15, was diagnosed with Rett Syndrome at the age of 2. Tonya shares their family’s story in the hope of others receiving an earlier diagnosis and leading to increased support and services.
You can follow Sara’s stories on her FB page, Love for Sara.
Category: Anticipatory Grief
My family celebrates Christmas. Until my daughter was diagnosed with her fatal illness, Christmas was only a joyful, fun, happy holiday for me. I loved the decorations, the carols, the cooking, I even loved the shopping. And I especially loved how family came together to sit, eat, share, give, take and be.
And then it happened: a month before Christmas 1999, we learned our beautiful 6-month old daughter Cameron had an incurable illness and would die sometime in the next 3 years. That first Christmas, 5 weeks after diagnosis, I was simultaneously numb and hyper-alert. Heartbroken and yet heart open. My daughter looked like a sugar-plum in her matching hat and sweater on her chubby little body and I wanted to eat her up to protect her from the ravages that were coming. And to protect myself from the pain that was coming.
In a photo of me on Christmas Eve 1999, where I am looking at Cameron, my maternal love and heartbreak are so evident in my eyes and expression: clearly it hurts me to look at this beautiful little person, my own flesh and blood, and know that she is going to have to leave, that she is going to be gone from me, and that I am going to have to let her go.
14 years later, it pains me to look at this photo. I am so sad for the woman in that photo looking at her child. If I could speak with this woman now – if the me of 12/24/ 2014 could talk to the grieving me of 12/24/1999 – I think I would say the following about Christmas:
There is no consolation for the fact that Cameron has an illness that cannot be treated. I am sorry for how scary and sad you feel about this, how deeply sad you are for Cameron herself, and I am sorry for the loss you are anticipating for yourself and the rest of your family. I see that the naive scales have fallen from your eyes about this time of year. Forever after, you will now understand that the Holidays really are NOT “the most wonderful time of the year.” You will experience the contemporary holiday music playing in the supermarket and malls and on the radio as cloying. You will reject the over-simplified message of Joy. You will have urges when you want to punch people in the face. You will see the unspoken sadness that so many carry but about which they do not speak, and you will feel a kinship with people who are grieving, especially during the holidays.
But with all of the losses that lie ahead for you, all is not lost. There is so much you will find. As you help your daughter live the fullest short life possible, you will experience profound kindness from others: your husband, your friends, your siblings, your parents, your in-laws, doctors, therapists and nurses. Because of this, you will decide that the virtue you value most is that of Kindness. You will look to practice this kindness with others, especially those who are grieving for their children, and you will discover profound community with these beautiful families. You will also discover that you love poetry. And you will discover Prayer, which will begin your relationship with God (an unanticipated relationship and one that is especially apt at Christmas time). You will also develop a personal relationship with the concept of Hope and you will come to believe that Light always prevails over Darkness. You will be well and your family will be intact despite Cameron’s physical absence.
Don’t ask me to explain how this can and will be so. It simply is. It is OUR lived experience—Yours and Mine. Ours. Trust Me. Trust Us.
Category: Anticipatory Grief
This is a phrase that I’ve heard so many times since my youngest daughter was diagnosed with Tay-Sachs Disease, a fatal, incurable genetic disorder. I understand that most people don’t know what to say, but frankly, I’m slightly irritated by this statement, and my internal response is always the same – what in the world am I supposed to do? Jump off a cliff? Run away? Start crying and never stop? Of course not! My actual response is usually something like, “I don’t have a choice.” When faced with life’s traumas, we can choose to survive and cope or we can lose it and become useless to everyone, especially our family.
The fact of the matter is that I am a wife and mother, and I have a husband and two beautiful girls who depend on me. I am not a superhero. I am simply putting one foot in front of the other. I am choosing to carry on. I am surviving.
When you take on the job of parenting, it is not on the contingency that your children are healthy and will live long, uncomplicated lives. You do it without conditions or restrictions. To suggest that parents of medically complicated children are stronger or more dedicated is unfair to the parents of healthy children who, if faced with the same situation, would certainly rise to the occasion. We don’t expect some kind of parenting award simply because we continue to get out of bed every day.
One can never know when life will throw you one of those curveballs that you never see coming. I think it’s hard for some people to fathom these things happening to them, but the undeniable fact is that it can happen to any of us. That’s what makes people like me so scary. I am a constant reminder that “this can happen to you!” Some people can’t handle having such tragedy right in their faces, and it’s easy for them to say “I don’t know how you do it” because they can assume that they will never have to know the answer to that (and I hope beyond hope they are right about that).
In reality, my days are not spent crying. I don’t have to “put on a happy face” before I leave the house. When you see me smiling, I can assure you it is sincere. Why? Because I have a daughter who brings me great joy. It’s true when they say that you can get used to just about anything. Her disease is no longer tragic and scary to me (don’t misunderstand, I’d give anything in the world if I could take it away, and some days are much harder than others). It is who she is, and I adore her. As another Tay-Sachs parent put it, her life will be short, but it will not be cut short. It will be complete with a beginning, a middle and an end, and it will be full of love and joy. No one ever said that a short life can’t be a good life, and her time here with us will not be downgraded simply because she will not get as many days as most. I have been given the kind of perspective that, unfortunately, only a terminal illness can give. I appreciate today and try to spend my energy focusing on the joys of life with my girls. I know that every single day I get to give both of them a kiss goodnight is a gift. That’s how I do it.
Category: Anticipatory Grief
My kids and I listen to country radio when we drive around. It’s been about two years now, so I’ve listened to a lot of country songs. And then, this past weekend, we went to the Grand Ole Opry, the “heart of country music”, old-style and new. I heard Country Music Hall of Famers, now in their 70s and 80s, sing some of their famous oldies (which were new to me, but familiar to many in the audience), contemporary pop-chart stars sing their current billboard song (very familiar to me, given that radio stations insist on replaying the same 10 songs every hour), and new songs from talent making their Opry debut. The voices were varied and rich and the songs different enough from each other, though, not surprisingly, they were all about love and relationships. As my teen daughters have observed, most songs are about love and relationships. But it’s a singular type of love and relationship that they’re about: romantic love, between young people experiencing first love or old married folk who are still rockin’ along in their rocking chairs. Rarely are they about the love a parent has for their child and NEVER EVER are they about a parent’s love for their young child who is living with and dying from an incurable illness.
On one hand, this is fair enough. Such a love doesn’t suit the standard country tropes of trucks, tractors, beer, cutoff jeans, Friday nights and Sunday mornings. Mostly though, it’s a pity, because there is no love more extraordinary, intense, constant and admirable than a parent’s love for their young child who is vulnerable, sick and dying. What an incredible feat it would be for a lyricist to turn their talents to this near-unspeakable subject and do it well?! I suspect, however, that no matter how beautiful the melody or words, such a song would never make the charts. Who would want to listen? Who could bear to listen? Even the parents who know this world too well probably couldn’t stand it. I would try. I don’t know how i’d do. The song would have to be so artful in its construction, capturing the dualities of sorrow and joy, loss and hope, fear and courage. It would have to make the unimaginable and unnatural suddenly accessible and knowable. I have never heard a song that has done this.
Here’s another thing that came to me at the Grand Old Opry (not for the first time but in a different way that really hit me over the head): a young child with an untreatable illness from which they are going to die doesn’t make any sense, at all. One of the acts at the Opry was a family of six beautiful and talented siblings, ranging in age from 14-21. These were the oldest six of TWELVE children, all from the same two biological parents. I went on the group’s Web site and looked at the photos of the 12 children. As presented and described on the site, these 12 children from one family are not only talented but also healthy and thriving and the parents are focused on their dozen’s ambitions and success. No genetic mutations or illness to be seen and no apparent indications from the older children that any mutations are lurking either. How to reconcile this with the number of parents I have come to know whose first-born child is diagnosed with a life-limiting illness in the first year or two of life? How to reconcile this with these parents’ agonizing over having other children? Of course, I can’t reconcile any of this because that isn’t how ‘It’ works. There is no rationale for why these children are born sick or have time-bombs lurking in their DNA. There is no meaning in the pain and heartbreak that parents experience when hearing the prognosis. S**t happens. Bad s**t happens to good people. We know this. The meaning comes in how parents respond. It is found in how they commit their lives and hearts to caring for their sick children with a blinding, unwavering intensity and love. If only country music could deliver us a masterwork about this to which we all would listen.
In the meantime, here are two songs:
1) Tomorrow’s Child, by Marcus Hummon, shared with his permission. I’m not entirely sure what it is about, but, in its lyrics and possibilities, it speaks to me.
2) And Taylor Swift’s Ronan, which is a compilation of entries from a mom to her son which Taylor turned into a little gem.
(If you are reading this and have a song you want to recommend to parents, about this sort of intense grief- and joy-laden parenting, please recommend it here.)