SHARING WISHES FOR 2015

I found this article in Psychology Today Magazine and want to share it with all of my followers caring for their children with a chronic illness. Everyday we should think of these suggestions for them and their family.

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My New Year’s Wishes for the Chronically Ill
Seven New Year’s wishes that I hope come true for those with health problems.
Published on December 27, 2013 by Toni Bernhard, J.D. in Turning Straw Into Gold

As we reflect on the year that’s passing, it’s not unusual to formulate wishes and resolutions for the new year. I’m not much for resolutions anymore (I wrote about this last year in “Top 10 New Year’s Resolutions that Nobody Will Keep”), but I do have hopes and wishes for me and for my readers.

May your family and friends be attentive when you talk about your illness, your limitations, and your disappointments.
There is nothing as exquisite to me as the feeling that I’ve been listened to and that I’ve been believed when I talk about what my life with chronic illness is like. I wish for all of you to have that experience. At the same time that I hope your family and friends are attentive listeners.

May you accept with grace that some family and friends may never understand what you’re going through.
Some people can’t handle being around the chronically ill because it triggers their own fears about illness and mortality. I’ve worked hard not to take it personally when family and friends “go missing,” because it only makes me feel worse physically and mentally. With as much grace and courage as I can muster, I let those people slip out of my life. I’ve done this with a couple of close relatives. It was hard at the time but, in the long run, it’s better for me to work on being content with my life as it is than to be around people who are uncomfortable or in denial about my illness.

May you find a doctor who will work with you as a partner in your health care—especially one who isn’t intimidated if you’re more of an expert on some aspects of your illness than he or she is.
In this internet age, it’s not unusual for people with chronic pain and illness to be the experts on their condition. I, for one, certainly have plenty of time to study my illness online! I’m fortunate that my GP welcomes learning from me and is open to experimenting with treatments. So long as what I suggest doesn’t run the risk of making me worse, he’s generally willing to try it.

No matter how hard a day is for you, may you keep your heart open for life’s beauty—the sight of a beautiful cloud in the sky, the sound of a favorite piece of music, the feel of warm water on your skin, something silly on TV.
Some days, I feel so sick that the only “beauty” I can find is a silly movie on TV, but that’s okay. Sometimes a good distraction soothes you just enough that your heart can open to let in even more of the many pleasures that life has to offer.

May you find a measure of peace and contentment despite your health challenges.
This is a hard wish for me to fulfill at times. Some days, things just fall apart. I cry out that all I want is my health restored, and I’m simply not able to see past that burning desire. The good news is that we can start over each time this happens. We can have our little pity party (they can be so cleansing) and then say: “Okay, this is my life; let me see what I can make of it despite my limitations.”
Sometimes I forget that even those in good health face tough times and have their share of difficulties and limitations. They may be under stress at work, or bogged down by familial responsibilities, or worried about a relationship. Each person’s life is a unique mix of what I refer to in How to Wake Up as the 10,000 joys and the 10,000 sorrows that make up this human existence.
I point this out because I think it’s valuable to keep in mind that we, the chronically ill, don’t have a monopoly on suffering. The key to finding a measure and peace and contentment in life is to understand that it’s inevitable that things will be unpleasant at times—even overwhelming—and not to identify with those tough times as a permanent part of who you are. In other words, you can have a good cry…and then start the day anew.

May you learn to treat yourself with compassion, beginning by recognizing that being sick or in pain is not your fault.
Learning self-compassion takes practice. A good starting point is putting aside any self-blame you may be experiencing. You’re in a body and bodies get sick and injured and old. It happens differently for everyone, but it happens. No blame!
I include many self-compassion exercises in my books because they’re my personal “go to” practices when I’m at a loss for how to cope. To practice self-compassion, I often speak silently to myself, using whatever compassionate words fit the moment: “It’s so hard to feel sick and in pain all the time”; “My sweet body, working so hard to support me.” 

Lastly, I wish this for all of you in the New Year:
May your suffering ease.
May you find joy amidst your sorrows.
May you be at peace.

© 2013 Toni Bernhard http://www.tonibernhard.com
Thank you for reading my work. My most recent book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow.
I’m also the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers. 

A MIRACLE FOR NATALIE

In response to The Daily Post’s writing prompt: “Secret Santa.”

There was a prayer that I cried out to God a million times for my son before he was delivered from his hell here on earth and his spirit left his body to find a place where all of his scars had been erased, where there is no illness, wounds, or misery where he resides today.

That prayer was for peace and a day to be pain-free. Today these words would be for his cousin, my niece, who suffers each day with all that comes with her torments she was born with.  She is sweet and  so beautiful.  If there could be a magic wand that I could wave over her golden blonde  hair and speak some strange words and conjure up twenty-four hours to know how life would be without Ehlers Danlos, Osteogenesis Imperfecta, or her physical deformities, that is what I would do.

There are millions of children waking up each morning in pure agony and they are never aware that we do not.  They are our forgotten soldiers, fighting through each moment to make it to another day.  They are bullied, ignored, pushed aside, and given up on by our medical and school systems.  It is a dream of mine that we will find a better way to care for them and their families within my lifetime.  Until that happens, I continue to pray for my miracle.

https://dailypost.wordpress.com/dp_prompt/secret-santa/

DIFFICULT CHOICES

With each passing day Alex’ illnesses were becoming more complicated. As a mother it was my duty to protect him, to help him to be the healthiest boy that he could be and allow him all of the experiences that he deserved. My thoughts are not always popular with other parents in the same situation. But I do not regret one decision that was made on his behalf. Although, that does not mean that I did not feel some overwhelming guilt at times blaming myself for allowing this procedure or that surgery. Isn’t it true that we all play the ‘what if’ game? Now, when I am able to look at his life as a whole, my husband and I made the most informed medical decisions possible at the time.

The first time that my limits, or lack of the same, on Alex’ activities came in question was at a second grade Olympic Games Day. He excitedly signed up for a running competition. Of course we signed the permission slip. Yes, he did need his inhaler and he was one of the last ones to come in. But he won a ribbon for participation that made him proud. It was when a teacher took it too far and demanded that he run around the playground until he was told to stop that raised a red flag on his competence to join in physical activities at school. He did not have his medication with him (a rule at the school) and eventually fell down beginning his second pass around. After that, Alex was excluded from many of the PE exercises.

When he was at home he ran and played with all of the other children. He rode bikes, skateboarded, ice skated, climbed trees, and hiked taking time out when necessary to use the inhaler or take some medication. As he was getting older, his requests came with more dangers attached. There were weekend stays in the mountains with his best friend’s parents cabin, overnight trips with the band, a two week student exchange in Mexico, and local parties. The decision to permit these outings is difficult for any parent. But when faced with the fact that your child has physical problems, it is made more challenging. Alex was in Junior high school at that time and we chose to make a pact with him that we would attempt to say yes to as many things that we could as long as he never was without all of his medications, the parents of the other children knew his problems, and carried a paper with emergency numbers including his doctors’ phone numbers. Yes, again. He did end up in the hospital for an endoscopy at times, even for a particularly rough asthma attack. These things happen. Alex remained compliant with our rules.

High school was a whole different world. The opportunities that we would never think of stopping our older son from doing now was facing us head on with Alex. First, there was driving. That is giving up so much of a parent’s control. Well, we did make that pact. Ok. He got his driver’s license and his uncle’s cute blue bug. I am watching the video in my head right now of that day. His smile went from ear to ear. Then there were cruises with the school, girlfriends, driving himself to the doctor’s appointments and allergy shots, his trip to Europe with the senior class.

Not long after his graduation, Alex began applying to colleges everywhere in the United States. He had played the clarinet since the sixth grade and he wanted to continue his education in music. This was tricky for us. We knew that there would be some time before he would be accepted to a school and we would use that time to prepare ourselves, and him, for this transition. My husband and I made it clear to him throughout his life that he could do whatever he wanted to do. He believed it.

While Alex filled out school applications and attended auditions, we were preparing in other ways. The most important thing on our list was to make sure he had a required surgery before he left. He had GERD since he was nine years old. By now he had been through a multitude of endoscopies for dysphagia (when food would get stuck in the esophagus), ulcerations causing bleeding with blood transfusions, and biopsies to watch for any changing of the cells.

The next was to have all of the medication for the time he would be at school. Alex was diagnosed with narcolepsy when he was seventeen. He had been driving home when his car went off an embankment of the 118 Freeway.   Manuel and I were told by the police that they had never brought up a single person alive from that area. They also informed us that Alex was not drunk or on drugs. Of course, we knew that. He had been tested for sleep apnea three times without a diagnosis. Now he was sent to a neurologist to be tested for narcolepsy. Finally, we had an answer for his sleeping disorder. This meant another drug, Ritalin, in his laundry list of meds to take. He would also have to lug his breathing machine with him wherever he went, along with all the liquid medications necessary for the use of the machine.

The letters started coming in. Three colleges had accepted him. The one he chose to attend was The Boston Conservatory. When asked why, he would tell us it was because they only chose two clarinetists that year, and it was the best school to go to for what he pictured his future to be. But, I knew that his girlfriend had her own letter of acceptance from Brandeis University that was just a train ride away. Well, it was done. He did his part, now it was our turn to do ours.

The surgery was scheduled. We bought the extra health insurance for him at school made sure that he would have a private room downstairs to accommodate his ‘tilt-a-bed’, the breathing machine and all of the paraphernalia that he required. That was almost unheard of for a freshman.

The day came when Alex and I boarded the plane to see him off to start his next chapter of life as an adult. I left behind some relatives and friends (even some acquaintances) in disbelief that we would not only approve of his move to Boston, but to encourage him and help him in every way we could. These were his hopes and dreams for his future and we loved him enough to let him go to be the person that he was meant to be.

The one thing that you learn along the way is that It never gets easier. There will be many more choices and decisions to be made.