Perspective

Today we have a guest post from CCA Mom, Liz Anderson. Her words ring true and we think you will truly enjoy her thoughts on "Perspective."

We all have our stories and our struggles; some of us as patients, others as parents, some as siblings, and others as supporting family and friends.  Especially in the beginning or in the midst of some new test, procedure, visit to a doctor, or surgery, we all feel like our experiences are the most dramatic or the most complicated.

With each new challenge or procedure, we can all get that drowning feeling. It overwhelms us every time, only to look back after-the-fact and think about how we have overcome that obstacle, and although we know there are more, we can continue to thrive each time.

Everyone views an experience or lifestyle with their own unique perspective, and those new to the experience can feel like they have so far to go. Thankfully, perspective tends to change over time, which in essence, allows us to move along with our medically and socially complicated lives in a smoother fashion.  I remember when Nathan was born, so many doctors visited us to tell us about all of the things that we would be able to “fix” about him as he gets older.   “Fixed,” was the word they used, as if he were broken.  Dave and I clung to each other, nodding our heads, still in shock, and truly believed every word these doctors told us. We were new to this entire world, and we had nothing else to base our opinions on, but the advice of doctors who were out of their realm with this rare infant in their nursery.  We told ourselves, “It would be ok.  It can be fixed.”   But to tell you the truth, we really only told ourselves that because we were in complete shock and totally clueless. Truly, all of these opinions, all of these thoughts and feelings, really boil down to one subjective word...Perspective.  At that time, we had none.

“The best view comes from the hardest climb-- Unknown”

Isn’t that the truth? I spent the first two years of Nathan’s life researching all of the procedures available and at what ages they could be performed.  I read medical journals and poured over research studies.  Admittedly, I was completely obsessed over all of the details involved with them, that it took my focus away from raising my little boy. Then, Nathan started having more procedures to his palate and eyes after an infant jaw distraction.  After seeing my baby in pain, seeing him struggle to come out of anesthesia, learning more about the complications involved with being put under anesthesia, and watching what other people went through with their children during surgeries, I decided to take a step back from obsessing over the details.  My perspective changed, not from what anyone said to me specifically, not from someone’s thoughts on the best surgical method, but by holding my child’s hand and watching him overcome that pain, coming out of that rough time stronger and more equipped to conquer the world.

Fast-forward six-and-a-half years, seven surgeries, hundreds of appointments filled with numerous procedures and expert opinions later, and now I’ve got a child with his own perspective; opinions I did not think about when he was an infant. He is helping our whole family to grow and once again widen our tunnel-vision a little more to include his input and thoughts, which, at times, are starkly different than ours.  Hearing his thoughts helps me to understand and appreciate others when they share an opinion that may differ from mine.  Hearing him speak so confidently about his own body and his struggles with surgery, made us stop in our tracks and realize that this is his journey, and we are just the drivers. That is the beauty of the scope of perspective, and how each new piece of information, feeling, and experience helps to mold us and deal better with the challenges that we know will certainly come our way.

Unfortunately, perspective can be a double-edged sword. With all of the message boards available on Facebook and social media, diverse opinions are available to support or shut down absolutely every current practice or belief in the craniofacial world and any other conditions that so many people are dealing with.  I have always appreciated those open forums through these boards, but they certainly can become overwhelming, especially when members start to argue over a point that can throw a new parent into a tailspin, not knowing which end is up.  While we with young children all truly appreciate the support from those who have trudged ahead of us, there can sometimes be this attitude of “you haven’t seen nothin’ yet,” or “at least your kid hasn’t had to …., “ The worst is “It’s not in your child’s best interest to…..”  

I must admit, that I’m guilty of this, on many counts, at least in my mind.  I remember having come home from the hospital with Nathan after his cleft palate repair.  He was eight months old and came home with an NG tube up his nose for feedings and hundreds of stitches in his mouth.  He couldn’t sleep well, he couldn’t breath easily, and he bled for days.  I would have to hold down his little arms while he screamed at the top of his lungs as we had to keep putting the NG tube back up his nose that he had pulled out for the ninetieth time that day.  Needless to say, it was an overwhelming time in our house.

At the same time, I specifically remember a friend posting on Facebook that her son cried in the doctor’s office when he got his two immunizations, and that she did too, knowing that the shots had hurt.  Her heart was completely broken.  I imagine now, that if you walked in the room at the moment I was reading that post, you would have seen fire coming out of my ears.  It made me angry and bitter that her biggest problem at the time “merely a shot.”  It took every part of me not to type a nasty comment back telling her how much worse it could be and that she should just suck it up.  But, I came down from my anger, and I thought to myself that our perspectives are so different. That experience for her was awful, just as my current one was.  She didn’t need me to tell her how much worse it could be;  she just wanted us to listen and relate.

And I also know that many of you who read about our palate repair at that time, would have thought the same thing about me -- that this too shall pass, and it will all work itself out in the end. That’s perspective helping us to change and grow, and there are some times when we just want to be heard for the sake of being heard, and we want someone else to say “Yes, this is hard.  Yes, this is a very difficult decision.  No, there is no correct and perfect way.”  And what a blessing it is when that happens! In those times when we don’t have much perspective and our tunnel vision is in full effect, a healthy support system like the Children’s Craniofacial Association (CCA) is paramount for helping us to grow, change, and learn from the oh-so-stressful experiences that we are having either ourselves or with our children.

At an early stage in Nathan’s life, I wove myself into an incredible support system of moms in the same place as me and a few steps ahead in their craniofacial journey.  I became an active member of CCA and I saw how others handle their pain.  I learned that life can be a complete and utter JOY, all without being explicitly told what to do by any of them.  I watched, I read, I cried for them, I prayed for them.  As a family we continually discuss what these other people are dealing with together, and how we will feel when we are in that same boat.  I have been held up by these mothers and CCA members, and was allowed to let my perspective evolve and change, and I am so appreciative of all of it.  I don’t know where my family would be without these amazing people in our lives, and how differently we would look at living a life with a medically complicated path.  I do know for a fact that we would feel alone, confused, and probably overwhelmed.  I also know that our son is young, and we still don’t have the “best view.”  We have more hurdles to get over, more mountain to climb, and more bumps in the road.  But now, our ever-changing perspective allows us to  know that when we are in the thick of whatever is plaguing us at the time, that we can find someone, somewhere in this group to help us take a step back and gain the perspective we need to trudge through, and  eventually, we can become someone that new scared parent looks to when they are in need for a fresh and necessary, broadened view.

Motivate your Kids to Get Off the Couch this Fall!

Today's guest post is from Amy K. Williams. Amy K. Williams is mother of two and a former social worker, specializing in teen behavioral issues. Parenting is her passion and she is especially involved in spreading the word about positive parenting techniques.

It can often be difficult to motivate a child to go outside, especially in this day and age. According to a recent study, only one in three kids in the United States are physically active every day. The challenge can be even more daunting if the child has a medical situation and might not be able to see why time spent outside can actually be good for them and their recovery. It is always best to speak to the child’s doctor, however, to see just how much physical activity they can safely handle.

Depending on the age of the child, parents will want to pick an activity that is as age appropriate as possible. For those kids on the younger side, for example, going to the gym or an extended run might be a little too much for them in the immediate future. However, more structured activities, such as an easy soccer game, swimming or a bike ride will be just what they need to coax them out of their shells. The games should be tailored to who they are both physically and emotionally.

Of course, the best way to help a child who is often cooped up indoors recovering is to be a role model. Children of all ages look up to their parents, and will often try and mimic them as much as possible. If the kids see mom and dad outside enjoying the fresh air and sunshine, they will be much more likely to get up off of the couch and join them. Once the kids get into the habit of being outside and physically active with their their parents or on their own, they will be totally hooked!

Kids are social creatures by nature, and never want to do anything alone. While the presence of a parent is key, the parents should also focus on setting up playdates with friends and encourage outdoor play. Even if a child is somewhat reluctant to do something that could be physically demanding, they will be much more likely to participate in the activity if they see their friends around them having a good time. Some gentle cajoling with peers will be all the motivation needed.

Limiting screen time will also be a great way to get a child outdoors. Even for kids who are recuperating from surgery will find themselves distracted for hours on end by an endless cycle of television and surfing the internet. By cutting off their access to electronics after a certain time period, such as an hour or two, the child will be much more likely to venture outdoors and play instead of whiling away the hours being bored and listless inside.

According to the American Academy of Pediatrics, kids should get no more than two hours of screen time each day, so parents needs to give their couch kids alternatives to these passive and unhealthy pastimes. Playing around at the local playground with friends or even just walking the dog with mom and dad are great ways to spend time outdoors instead of staring at a computer screen or television. To keep that temptation away, all electronics should be in a central location that can be monitored by each parent.

By simply working with a child, they can come out of their shells a little bit and more fully enjoy the world when they are not inside recuperating. Even for kids that have had surgery or face certain medical issues, outdoor exercise is essential for their emotional and physical well-being. Come up with fun and different activities, Parents, because you play a major role in getting the kids outside, and following our advice can make it that much easier on the whole family. Once the kids are outside, they will love the exercise!

#FlashbackFriday: Self Care for the Caregiver

By Jeannie Ewing 

This post written by CCA mom, Jeannie Ewing in November 2015, is an important read for all those parents, spouses, uncles & aunts, guardians, and special friends out there taking care of people suffering with chronic medical issues. CCA salutes all of you for your dedication and love. And now, without further ado, here are some ways to show yourself some love. 

***

I think every caregiver knows that “we can’t care for others until we first care for ourselves.”  It has become a cliché of sorts in the caregiving community, and yet we are so poor at implementing it ourselves.  The head-heart connection is somehow lost upon us as we move from one crisis to the next, just barely keeping our heads above the water.  It might be helpful to list tips on self-care, but we all know we need to eat right, drink more water and less alcohol, quit smoking, sleep at least eight hours per night, and exercise daily.  What more can be said?

Self-care begins with self-love.  If we truly possess self-worth, then we are willing to prioritize loving ourselves back to health.  It’s no surprise that caregivers are more susceptible than the populace to divorce, chronic disease, and substance abuse.  So how do we rise above that statistic and overcome the odds?  Quite simply, it begins with believing we are worth caring for and then extending love and mercy upon ourselves.  

When we love ourselves, we recognize the signs our bodies use to communicate that we need to slow down or even stop completely for a while.  It may seem impossible to do this when you have a medically fragile child, but it’s paramount to be tuned in to our inherent needs before they get wildly out of control.  For some of us, managing stress can be as simple as taking five minutes away from everything and sitting in silence.  For others, it involves meditation and still others may take a fifteen minute walk in nature.  No matter the means, the point is that we must prioritize loving our bodies and minds so that they can be renewed and energized to tackle the next catastrophe or stress-inducing frustration.

Take time today to find five, ten, or fifteen minutes to do something that refreshes you, makes you feel alive and awake, and draws renewed strength for you to offer yourself more fully to your loved one.  

Jeannie Ewing is a writer, speaker, and grief recovery coach.  She is the co-author of Navigating Deep Waters: Meditations for Caregivers.  Jeannie was featured on NPR’s Weekend Edition and Tony Agnesi’s radio show Finding God’s Grace.  For more information on her professional services, visit her websites lovealonecreates.com or fromgrief2grace.com.  

Text Copyright 2015 Jeannie Ewing, all rights reserved.

Image Copyright 2013 “Balance” by realworkhard on Pixabay and edited in Canva by Jeannie Ewing.

Caregiver Grief & Joy

November is National Family Caregivers Month. Over the course of our lifetime, many of us will find ourselves taking care of a loved one with a disease or disability who may need temporary or long-term assistance with daily activities. Being a caregiver, or what is often referred to as a "care partner," can be fulfilling by offering the opportunity to provide a loved one, friend, or neighbor with needed help and reassurance. However, this role can also affect the life of the care partner in significant and often challenging ways. Today, we have guest blogger and CCA Mom Jeannie Ewing here with a little more insight on the topic. You can see her previous post on caregiving here. 

Most caregivers freely talk about what they have learned and how enriched their lives are because of their medically fragile children.  We share with others about how we have positively changed despite challenges, and people listen to these stories of overcoming adversity.  But what do we do about the sometimes hidden grief that lurks around the corner every day?  We seldom admit that we are overwhelmed, struggling, and entirely depleted.  It’s far too awkward to mention this to our family and friends, and yet the grief is present and needs to be acknowledged.

Caregiver grief often differs from other types of grief, because it is chronic rather than acute.  Unlike a sudden death, caregivers grieve over the course of time due to the reality of facing mortality on a daily basis.  The grief can sometimes conceal itself as physiological maladies or psychological diagnoses (most commonly depression and anxiety), but the source of these manifestations is often unresolved grief.

We must remember that grief isn’t merely sadness and differs from depression in many ways.  Grief is the collective experience of memories, emotions, hopes, and dreams that collide in a way that produces different responses in each individual.  Grief can be complex and difficult to describe, but essentially it includes both sorrow and joy.  We might lament the child we dreamed we would have had as we face the reality of his or her medical condition while at the same time feeling grateful for being blessed with someone who has taught us so much about love and life.

Essentially it’s important to be authentic in our encounters with others who aren’t caregivers.  Naturally we want to accentuate the positive aspects of caregiving when conversing with non-caregivers, but the real, raw struggles are equally valid to acknowledge and discuss.  Chances are, people will admire you for being emotionally transparent and perhaps may be able to relate to you on a deeper level.

Find one way today that you can connect authentically with someone in your life: perhaps a long-lost friend, an extended family member, or a neighbor.  Write a short note in a card, offer a lunch date, or call to talk (and listen) for a while.  You will feel revived and refreshed, and the other person will feel loved, as well.

Jeannie Ewing is a writer, speaker, and grief recovery coach.  She is the co-author of Navigating Deep Waters: Meditations for Caregivers.  Jeannie was featured on NPR’s Weekend Edition and Tony Agnesi’s radio show Finding God’s Grace.  For more information on her professional services, visit her websites lovealonecreates.com or fromgrief2grace.com. 

Text Copyright 2015 Jeannie Ewing, all rights reserved.

Image Copyright 2015 “Flower” by PixelAnarchy on Pixabay and edited in Canva by Jeannie Ewing.

Self Care for the Caregiver

November is National Family Caregivers Month. Over the course of our lifetime, many of us will find ourselves taking care of a loved one with a disease or disability who may need temporary or long-term assistance with daily activities. Being a caregiver, or what is often referred to as a "care partner," can be fulfilling by offering the opportunity to provide a loved one, friend, or neighbor with needed help and reassurance. However, this role can also affect the life of the care partner in significant and often challenging ways. 

Today, guest blogger and CCA Mom Jeannie Ewing shares more on Care Giving to honor the special caregivers in our CCA Family and the cranio community worldwide.

I think every caregiver knows that “we can’t care for others until we first care for ourselves.”  It has become a cliché of sorts in the caregiving community, and yet we are so poor at implementing it ourselves.  The head-heart connection is somehow lost upon us as we move from one crisis to the next, just barely keeping our heads above the water.  It might be helpful to list tips on self-care, but we all know we need to eat right, drink more water and less alcohol, quit smoking, sleep at least eight hours per night, and exercise daily.  What more can be said?

Self-care begins with self-love.  If we truly possess self-worth, then we are willing to prioritize loving ourselves back to health.  It’s no surprise that caregivers are more susceptible than the populace to divorce, chronic disease, and substance abuse.  So how do we rise above that statistic and overcome the odds?  Quite simply, it begins with believing we are worth caring for and then extending love and mercy upon ourselves. 

When we love ourselves, we recognize the signs our bodies use to communicate that we need to slow down or even stop completely for a while.  It may seem impossible to do this when you have a medically fragile child, but it’s paramount to be tuned in to our inherent needs before they get wildly out of control.  For some of us, managing stress can be as simple as taking five minutes away from everything and sitting in silence.  For others, it involves meditation and still others may take a fifteen minute walk in nature.  No matter the means, the point is that we must prioritize loving our bodies and minds so that they can be renewed and energized to tackle the next catastrophe or stress-inducing frustration.

Take time today to find five, ten, or fifteen minutes to do something that refreshes you, makes you feel alive and awake, and draws renewed strength for you to offer yourself more fully to your loved one. 

Jeannie Ewing is a writer, speaker, and grief recovery coach.  She is the co-author of Navigating Deep Waters: Meditations for Caregivers.  Jeannie was featured on NPR’s Weekend Edition and Tony Agnesi’s radio show Finding God’s Grace.  For more information on her professional services, visit her websites lovealonecreates.com or fromgrief2grace.com. 

Text Copyright 2015 Jeannie Ewing, all rights reserved.

Image Copyright 2013 “Balance” by realworkhard on Pixabay and edited in Canva by Jeannie Ewing.