We belong to a unique club of parents – when our children were born, or very young, we grieved and celebrated at the same time. We celebrated this beautiful child. Yet we grieved for the “healthy” child we were hoping for. We grieved for the parenting experience we were expecting. We simultaneously learned about how disability would impact our families for the rest of our lives. There were no baby or parenting books to show us the way. We leaned on other parents who have been where we are.
We all mourn differently. And the mourning we experience is prolonged. The initial diagnosis is akin to a bomb exploding in our soul. We rebuild after that. I like to think of it as kintsugi, the Japanese art of repairing broken pottery with gold. As much as my son’s original diagnosis of Down syndrome stung, he has made me better in every way. Same goes for his immune system deficiencies, his hearing loss, and the many other medical complications we deal with. I am more empathetic, caring, knowledgeable, and understanding because of him. I am better because of him and the people I now know because of him. Many of my peers in similar situations feel the same way. It’s hard at times, but we would never change our children. We just try to change the world around them. On the good days, our lives can feel like a perfectly imperfect piece of pottery, its cracks filled with shimmering gold.
If only life were as simple as a kintsugi analogy.
What happens when we run out of those precious metals to piece our broken hearts back together with? What happens when we feel like we’re fixing our insides with mud that won’t dry. We put ourselves together only to fall apart over and over again.
That’s where I am now. Caring for 3 children, one who has a disability, is challenging but manageable. On top of that I have an ailing loved one in a difficult, hopeless situation. It is a painful, tangled web. I know I’m not alone. In a year where the Center for Family Involvement is highlighting the power of hope, we want to acknowledge how complicated hope can be. Not all situations offer hope. Sometimes things are not going to get better, they are going to get harder. Sometimes we must simply enjoy someone while they are on this planet with us, knowing that time is fleeting.
I surveyed CFI staff to find out how they cope when the hard times last months or even years.
EMBRACE THE JOY
Eternal happiness is a fallacy. It is impossible for us to be happy all of the time, even if everything is going perfectly. It is unnatural. Contentment, on the other hand is achievable; being OK with where you are and what you are doing. When times are tough, acknowledging and honoring that is important.
What we can do is embrace the joyful moments when they come around. A child’s laughter. A ridiculous joke. A warm embrace. Savor those moments. Be content knowing you are doing your best.
SHARE YOUR STRUGGLES
When you or someone you love is ill or having a hard time it can impact every part of your day. Grief can be debilitating. But when that grief carries on for months and years, we have to carry on. We put on a brave face, yet everyday tasks can be challenging. Focusing on work can take every ounce of our being, even if we love our job. There are days when we go through the motions like an emotional zombie. Sitting through meetings with a fake smile.
It’s important to let a couple of people know what is happening. Your boss might notice performance issues, she will be more understanding if she knows the root of them. Confiding in a friend can help relieve some of the stress. Lean on family if you can.
TALK TO YOUR CHILDREN
Our children are highly receptive of our emotions. They know if we are upset. Explain to them what’s going on in a way they can understand. This is especially important if it is a situation that will end with death. They need to be prepared for that in an age appropriate way. When my children see me crying, they immediately know why and offer me hugs and empathy because I have explained to them what is going on. When our loved one passes, they will be as ready as they can be.
FIND A HEALTHY OUTLET
Chocolate, wine, shopping, and binge-watching TV might feel better in the moment. But many of the things we look to for comfort can do more harm than good, especially when this is an ongoing challenge.
Look for things that can truly bring you relief. I physically crave running when my situation worsens. It helps me breathe, even if I have to stop to sob. Brisk walking is a wonderful outlet. Think about what what will make you feel better. Perhaps a cup of tea, a chat with a friend, mediation, music, a nap. If nothing healthy sounds good to you, that’s OK too. But try to retrain your body and mind to seek something stress relieving during tough times. Replacing harmful habits will help you in the long run.
SLEEP
Never underestimate the power of sleep. Go to bed early when you can. Take a nap when you can. Everything else can wait. If you have a loved one who wakes you every night, you have every reason to crash whenever you can. Explain to your partner that you need this now.
PREPARE TO POWER THROUGH
Dawn Peifer-Snow is the CFI’s Family Engagement Specialist as well as our Blind/Visual Impairment Specialist. While on bedrest, pregnant with her daughter, doctors gave her a grim outlook on what might happen if the baby was born in the next two weeks. When she arrived a day and a half later doctors told Dawn her daughter would likely never walk, talk, sit up, or eat on her own; she would most likely need full care around the clock.
Peifer-Snow recalls, “Surviving those days and feelings? I remember feeling like the wind had been knocked out of me for a moment. I remember taking a deep breath, thanking the doctor and walking with my mother to the elevator. Once inside, I collapsed to the floor in gut wrenching sobs.”
After that moment, she collected herself and headed to the NICU to be with her baby. She doesn’t remember feeling any more sadness. She just did what had to be done: learning, nurturing, using monitors, administering CPR on more than a few occasions, enduring surgeries, learning her daughter was blind, later learning her daughter was on the autism spectrum.
Peifer-Snow powered through and her daughter is now in high school, thriving. She had another daughter amid all of this and found strength in seeing the sisters’ bond grow. She says, “On the days I struggled I just allowed myself that day or sometimes days to do what I needed.”
FINDING FAITH
While Peifer-Snow watched her daughter defy the odds and prove so many doctors wrong, she experienced the opposite with her stepdaughter. Over the years Peifer-Snow and her daughters grew close to another family and eventually married and blended into one. When her stepdaughter was 12, they learned she had a degenerative condition that would take her life by her early 20s. (She passed away last year at the age of 18.)
In both situations, Peifer-Snow says her faith in God helped her cope. “Seeing God’s blessings at work were extremely helpful; to see the lives that were brought together due to the circumstances, to see the lives {her stepdaughter} impacted and touched were helpful. To hear laughter was the best… We found comfort and peace as a family at a place by a river and would stay there a lot. Lots of music, and a lot of silliness and laughter.”
Not everyone worships the same God or even believes in God. But that does not mean faith cannot help us. Having faith in the goodness of people can bring us comfort. Difficult times can introduce us to new friends and new strengths within ourselves. It can prepare us to help someone else one day because we have a greater understanding of the delicate balance of life.
ASK FOR HELP/TAKE A BREAK
“We coped by doing family projects to take our mind off the stress – yard work, building, painting, rearranging furniture. We coped by helping others, we coped by taking breaks and mini vacations when we needed them,” Peifer-Snow says. She recommends turning to friends, family, and/or attendant care for help. “Sometimes space is needed, sometimes drawing close is what is needed; being ready to go with the flow and trusting the pieces will fall into place is important.”
USE 10 YEARS FROM NOW AS A REFERENCE POINT
We can get so caught up in the day to day that we can’t see the forest for the trees. If you’re having a hard time making a decision, try to put yourself a decade into the future, looking back thinking about what matters. Chances are skipping that PTA meeting or even taking a leave of absence from a group won’t feel like a big deal down the line.
My father, one of the hardest working men I have ever known, taught me early on that skipping a day of school or work is good for the soul. He would tell me, “When you look back on life, what will you remember more, having breakfast with your dad when you should be at school? Or having near perfect attendance?” Reflecting on my 40+ years, I don’t regret a single day off or time spent with friends. But I do recall more than a few meetings that were a complete waste of my precious energy.
MANAGE YOUR ENERGY
As a society, we tend to be overly focused on time – making time, saving time, taking time. New research from Harvard is indicating that time management is futile, it is our energy that we need to manage. According to the Harvard Business Review, “The core problem with working longer hours is that time is a finite resource. Energy is a different story. Defined in physics as the capacity to work, energy comes from four main wellsprings in human beings: the body, emotions, mind, and spirit. In each, energy can be systematically expanded and regularly renewed by establishing specific rituals—behaviors that are intentionally practiced and precisely scheduled, with the goal of making them unconscious and automatic as quickly as possible.”
Examine the things in your life that are draining you. What can you change? What can you do to energize yourself? If you have a friend or acquaintance whose name makes you cringe when you see a call or text from them, how can you minimize interaction or cut ties? Review your obligations and cut back where you can. Limit contact with family members who upset you and utilize email if you must communicate. Examine what you are eating and drinking and make changes to improve how you feel.
When your mind and body are pushed to the extreme for an extended period of time, you need to take measures to preserve your energy where you can.
NURTURE YOURSELF
A mother shared with me recently how her child’s diagnosis affected her on a cellular level. In the 11 years since her child was born, she says she went from feeling young and vibrant to someone aged beyond her years.
Not only does chronic stress age us, it can cause insomnia, weight gain, weight loss, digestion problems, heart issues, and more. Stress affects each of us differently. The only consistency here is that long term stress and the anticipation of stress affects us all.
That is why it is critical to take care of ourselves first and foremost. The metaphor of giving yourself oxygen on an airplane before you assist your loved one is overused because it is spot on.
We often use caring for our loved ones as our reason to NOT do all of the things we should be doing for ourselves. It’s time to change that and use them as the reason we ACTUALLY DO those things. Eat right, sleep, exercise, take a break. They are a necessity not just for us, but for those we are caring for.
FIND TIME TO APPRECIATE YOUR LOVED ONE
From the moment we get a diagnosis – everyone’s focus is on fixing this human being. Doctors and society equate disability with something wrong that we need to fundamentally change. Granted, in many cases medical intervention is necessary. Treatments and therapies can help improve the quality of life. We can lose sight that our loved one is a person who needs our affection just as much as our advocacy.
Because of this, we are often robbed of enjoying our children or loved ones. We talk to parents who have barely cuddled their newborns. We hear about children who spend most of their free time in therapy instead of at the playground.
It is OK to say NO. It is OK to draw the line. Cut back on therapy. Set boundaries. Create family time. Enjoy each other. We don’t need to fix everything. Sometimes we just need to live, to be.
EXPRESS YOUR GRATITUDE
For those of us lucky enough to get help and emotional support from others, be sure to let them know you are grateful. It might be a while before we have the energy to return any favors, but acknowledging their kindness is often all that is needed.
Rebecca Stickler is our Regional Network Coordinator for Blue Ridge/Western Virginia. She is also a mother who is taking classes and finishing her degree. She leans on her children to get it all done. “My kids have really stepped up and helped. It’s like pulling teeth some days, but they recognize they need to help…. I am trying more just to appreciate them. ‘Catch’ them doing something good and telling them, or I will leave a post-it note in their room somewhere. I also mention the good stuff they are doing when I am talking with a friend and know my kids are in earshot.”
Remembering to show our love to all of our loved ones when most of our attention is focused on the person in need is important.
BEWARE OF “THE OVERS”
While sleep is important, too much sleep can be a sign that you might need help. Same goes for exercise and many other coping mechanisms. Our Mental Health Specialist Patrice Beard points out that, “over-sleeping, over-eating, over-drinking, etc. can be a sign of depression and needs to be recognized as such.”
BE GENTLE WITH YOURSELF
Beards says, “I talk with so many people who are so hard on themselves for what they say and/or how they reacted to a loved one or situation because of the grief/stress they are going through. Sometimes we are our own worst critic. It is not the end of the world when we fall short. “
LET GO OF GUILT
It is not your fault. You are doing enough. While we cannot control how we feel, we can learn to let go. A therapist I worked with stressed the importance of acknowledging our feelings, to be present in them, to understand them, to recognize why we are feeling that way, and then release it all. When guilt does creep in, remind yourself: it is not your fault; you are doing enough.
BRACE FOR SECONDARY GRIEVING
Many of us get over the initial diagnosis and fully accept our situation. Then circumstances change and we are emotionally sidelined all over again.
Our Rural Outreach Specialist Lisa Richard has seven children, two of them have Down syndrome. She shares, “Once I got over my intense depression I was all in and quite honestly was cool with my children and who they were. Their limitations, their challenges, even people looking at them since I have two, (ha!). What I was not prepared for was the grief that would revisit me as they got older.”
Richard found it difficult to see her typically developing children do things like start driving and head off to college and have her children with disabilities wanting to do the same. She says, “It was a different grief seeing all that I knew might happen, actually happen. Watching {my oldest daughter} get left behind was something I did not anticipate and no matter how much I ran interference and tried to make sure she went to prom and had parties, there are just certain things she was not able to do or at least not do on the typical timeline. I still hope she will date someone and have her own place, but watching her stand and see all of her siblings passing her by was/is sad.“
BE GENEROUS WITH FORGIVENESS
“Grieving impacts behavior – both mine and those around me.” Valerie Abbot, the CFI’s Learning Community Coordinator shares. “We all react in different ways to what is happening around us, especially when we are searching for an ounce of control or influence in a situation where we have so little. Forgiving ourselves and others for things we said or did in the heat of the moment, or when we felt lost or overwhelmed is often exactly what we need to do to start breathing again, to move forward.”
SEEK PROFRESSIONAL HELP
“If grief is overwhelming your life for a substantial amount of time (say 4-6 months) and nothing else seems to be helping, it’s always best to seek professional help,” Beard, our Mental Health Specialist says. “It doesn’t mean you have to be on medication; or maybe you do (for short or long term) depending on the situation. There is absolutely no shame in that. Support groups are wonderful as well. There’s something so special about sharing with others who know your walk.”
SEEK VIRTUAL SUPPORT
Sometimes finding time to talk to a therapist or attend a support group feels impossible. That’s when online resources can be invaluable.
“Understanding the Stages of Grief” is a tremendous resource for parents whose child receives a diagnosis.
And, of course, we highly recommend the CFI’s Family to Family Network of Virginia. We match parents and caregivers with one of our family navigators who has been through a similar situation.