Sunday, November 13, 2016

Strengthening Marriage: Being the Kind of Spouse I want to Have

I was recently asked to write a talk about marriage.  Although my blog has focused mainly on parenting when sick, I thought it would be appropriate to post my talk here as well, as a parent-child connection is not the only relationship that can suffer when mommy gets sick. 

In terms of marriage and people with disabilities, neurologist Richard Senelick, wrote an article discussing the struggles married couples have when facing disability.  He said, “Disabilities break down the basic structures of relationships. Roles may be reversed overnight…. The disability places increasing demands on the relationship.

We’ve certainly seen a role reversal here as my husband has had to take on so many additional duties in the home, with the kids, and in caring for me.  It has added stress to our lives and has made me feel inferior in regards to being an equal partner in our marriage.  I’ve had to look at other ways I can contribute and other things I can do to help my husband and continue to build our relationship. 

The following is geared towards everyone that seeks to improve their marriage relationship, not just the sick and disabled.  Yet, I’ve appreciated the opportunity to take a closer look at things I can do to improve my relationship with my husband, despite my current state of health.


Maintaining a Strong and Healthy Relationship with Your Spouse

  

Henry Eyring has said, “There is no more important commitment in time or in eternity than marriage."

And yet, life sometimes gets in the way.  I know there have been many times in my life where after dealing with work, kids, school, extracurricular activities, house, laundry, church responsibilities, and more, that my poor husband is the last person to receive my attention.  Currently, with my illness, my time of feeling “good” is so limited, I have to be so picky about what my priorities are and how I spend my time, as I can only do so much in a day.  

So amidst our chaotic lives, how can we make marriage a priority and how can we strengthen and maintain a good relationship with our spouse?

A piece of advice often given to those who are single is to be the kind of person you want to marry.  This advice shouldn't end once we've found our companion, however.  

We should strive to be the kind of spouse we want to have.  


The golden rule most certainly applies to marriage.

So what is the kind of spouse do we all want to have?  I have thought about this a lot the past week, and have come up with a rather long, yet I'm sure not all-inclusive, list of things I seek or treasure in my spouse.  Thus, I know these are the things I need to work on for myself, as well, in order to improve my marriage.

1.      I want to be a spouse that is kind.  Why is it that we are often kinder to strangers than we are to our own family whom we love?

2.      I want to be someone who takes time for and listens to my spouse.  We need to go on dates, share the exciting and mundane details of our days and, with the age of electronic devices in full force, put down our phones and have quality conversations and connections with no self-inflicted distractions. 

3.      I want to be a spouse that shows empathy and seeks to understand.  We may not always have the same opinion or point of view, and that’s okay.  But we shouldn’t discount our spouse’s point of view because it isn’t the same as ours.  As Stephen Covey has counseled, “Seek first to understand, then to be understood.”  

4.      I want to be someone who is quick to recognize my spouse's accomplishments and show gratitude for his actions.  So many of the mundane daily tasks in our lives may start to seem commonplace—but don't let them go unnoticed!  Show gratitude often.  I'm amazed at how much more willing I am to cheerfully serve my family when I know they recognize and appreciate my efforts. 

Additionally, if we can focus on the positive things each other is doing, it helps us to avoid dwelling on the things they aren't doing or we wish they would do-- which only leads to negative feelings and frustration.

Linda Burton said, "The nature of male and female spirits is such that they complete each other.  We are here to help, lift, and rejoice with each other as we try to become our very best selves.  Barbara B. Smith wisely taught, ‘There is so much more of happiness to be had when we can rejoice in another’s successes and not just in our own.’  When we seek to “complete” rather than “compete,” it is so much easier to cheer each other on!”

5.   Along these same lines, I want to be someone who apologizes and also forgives.

Linda Burton posed a question that helps put this principle in perspective.  She asked, "When was the last time I chose to be happy rather than demanding to be ‘right’?"

Steven Snow said, “Unnecessary pride can dissolve family relationships, break up marriages, and destroy friendships. It is especially important to remember humility when you feel contention rising in your home. Think of all the heartache you can avoid by humbling yourself to say, “I’m sorry”; “That was inconsiderate of me”; “What would you like to do?”; “I just wasn’t thinking”; or “I’m very proud of you.” If these little phrases were humbly used, there would be less contention and more peace in our homes.

6.   I want to be someone who thinks often about the needs of my spouse and how I can help.  While I may not be able to physically help him with every trial, sadness, or stressor in his life, I can always, always pray for him.

7.      I want to be someone that is happy and strives to make my spouse and others happy. 

Gordon B. Hinckley said, "Life is to be enjoyed, not just endured."  I also love Russel M. Nelson’s recent talk where he said “we can feel joy regardless of what is happening—or not happening—in our lives.”  We can be happy, even if life is not going the way we planned.  That is certainly a lesson we have learned in our family this past year, and I am so grateful for my husband who helps me smile and laugh every day.



Take care of yourself so you can take care of your spouse.


In addition to concentrating on these areas of improvement, there are two other principles of focus that I feel are important for a strong marriage.  The first is to take care of yourself.  I know this sounds counter-intuitive when talking about marriage, but I would assert that if your basic needs are taken care of, it will be easier for you to take care of the needs of others.

Barbara Smith said, "The state of our health affects every facet of our life—our feeling of personal well-being, our approach to work, our social interactions—even our service to the Lord.” 

One of the bumpiest times in my marriage was after our twins were born.  They were preemies and slow to eat-- you'd just finish feeding and changing them both when it was about time to start over. They were colicky and screamed for hours every night.  They got RSV (a respiratory infection) early on which had lingering effects for almost a year after.  And it seemed like they never, ever, EVER slept at the same time or for more than an hour or two at a time.  Thus, we also rarely slept and merely coexisted in a state of constant exhaustion.  Needless to say, the frazzled ends of our patience tended to ignite much faster than should have— not because we didn’t care about each other, but simply because our basic needs (particularly that of sleep) were not being met.

These is a well-known health theory called Maslow's Hierarchy of Needs.  Imagine a pyramid with five tiers or levels.  The bottom level is your most basic physiological needs-- such as food, water, and sleep.  The second tier is safety, then friendship and belonging, esteem and respect, and at the very top is self-actualization, or feelings of fulfillment-- something we all want to achieve.



The premise of the theory is that it is hard to reach a higher level of the pyramid until the needs on the lower levels have been met.  For example, if you were hungry enough, I imagine you would be willing to risk your safety (in the second tier) in order to obtain food.  Similarly, how much harder is it to give or receive kindness, patience, love and compassion when you are hungry, tired, and stressed?

Jeffrey Holland has said, "Fatigue is the common enemy of us all--so slow down, rest up, replenish, and refill."

If we take the time to take care for ourselves through rest, a healthy diet, exercise, and mindfulness, it will enable us to better attend to our marriage.  We can also help our spouses do the same-- which may mean giving them time to exercise or encouraging them to refresh by getting out of the house to spend time with friends, focus on hobby, or walk the aisles of Target alone without any needy children.

Trust in the Lord


Of course, despite our best efforts, we can’t fully eliminate stress or exhaustion in our lives.  But Todd Christofferson has assured us that, “Much that is good, much that is essential--even sometimes all that is necessary for now--can be achieved in less than ideal circumstances.”

So that is where my final words of advice come into play: “Trust in the Lord with all thine heart; and lean not unto thine own understanding.  In all thy ways acknowledge him, and he shall direct they paths.” (Proverbs 3:5-6)

Trust in the Lord
Source: http://www.crosscards.com/cards/scripture-cards/trust-in-the-lord-tulips.html

We are told that we can do all things through Christ.  Moroni 7:33 says, "If ye will have faith in me ye shall have power to do whatsoever thing is expedient in me." 

Marriage is ordained of God. He wants us to be successful, and He has promised to help.  Pray for and with your spouse.  Rely on your Savior as you strive to strengthen your relationship with each other.  In so doing, we can follow the proverb “Thee lift me and I’ll lift thee, and we’ll ascend together.”


Sunday, October 9, 2016

Happy (?) Anniversary: A year with POTS

This week marks the one-year anniversary of being crippled by POTS (Postural Orthostatic Tachycardia Syndrome).  Although I’ve suffered from health problems for much of my life, everything changed dramatically last year after I passed out in Disneyland and never fully recovered.

The day before my life changed!

In most connotations, the term “anniversary” is thought of as a happy occasion.  Wedding dates, years at work, or even time dedicated to a cause are all reasons to celebrate.  Even the anniversary of my mother’s death, which was an extremely heartbreaking occasion, we have used as an opportunity to celebrate and remember my sweet mom.  We order a cake from her favorite bakery, look at pictures of her, and reminisce about fond memories.  Although I miss her so much, it’s been renewing to use that anniversary to celebrate her life, rather than mourn her death.

As my one-year anniversary with POTS has been approaching, I have had a sense of increased anxiety and dread.  The meaning of chronic illness has set in more deeply.  I have moved through the stages of grief, once again, as the profound realization of the long-term loss of my life as was (and as planned for the future) has settled on me.  

I have thought a lot about the last year that I have spent in bed.  This is not an accomplishment I wish to celebrate.  However, I cannot look back over the past year without also recognizing the tender mercies that have been shown to me and my family.  And so, in this anniversary week, I choose to push down the waves of despair and, instead, focus on and celebrate all the good that has come into my life or been accentuated this past year. 

1.      God has a plan for me.  This concept has been made known to me multiple times in my life and has become evident again this year.  Ten years ago we lived in another state, hundreds of miles away from any of our family.  We loved it there, yet after a few years, and with no forethought of leaving, I had a distinct prompting that we needed to move closer to home.  Although I was not at all happy about the idea, we followed the impression and moved our small family back to Utah. 

Over the past decade I have seen numerous examples of why we needed to be here—most of which have included being close to family and meeting people that have influenced our lives for the better.  Additionally, this move and associated events have put us in a situation that has better prepared us for this year’s changes.  

Just months after our big move, my husband admitted that he was not happy with his new job.  I was also not happy.  Earlier that same year I had started my own curriculum company, but was working at it part time as the kids were napping or asleep at night.  It was gaining a lot of traction, and I just didn’t have the time I needed to commit to work and to the kids.  However, we were both dedicated to the fact that we didn’t want to send our kids to daycare if we could help it.  With a lot of thought and prayer, we took a huge leap of faith.  Even though my business was not yet in a position to support us financially at that time, Kelly quit his job and made a career change to become a realtor so that he had more flexibility to be home with the kids as needed.  I started working full time, expanded my business, and even hired on others to help.

It was a struggle, and there were many times that we wondered what in the world we were doing.  Over the years I have often questioned my decision to give up being a full time, stay-at-home mom.  However, I have always felt that we were on the path we needed to be. 

This past year has been incredibly hard figuring out my priorities and how to continue to juggle spending the time with my kids and managing my business with my limited time, energy, and abilities.  In addition to having some great people pick up the slack for me at work, I have been blessed to be able to work a bit from bed.  The bigger miracle, however, is that Kelly is home to help with the kids.  While I can spend a few hours a day on my computer, I am certainly not able drive my kids to school and activities, make their meals, or do a lot of the day to day care they require. 

What a tender mercy, and how obvious the hand of the Lord in our lives!  He knew what our predicament would be at this time and prompted us to make the changes years ago that would make life sustainable today.  I can’t imagine what we would have done this last year if Kelly wasn’t available to take care of me and the kids!  I’m grateful for the constant reminder that the Lord has a plan for us (even if we don’t always know what it is!).

Chillin' in bed with my cute kiddo!


2.      I have AMAZING people in my life.  I could write pages and pages about this and provide so many specific examples of the HUNDREDS of kindnesses that have been shown to us by others.  Referring back to blessing #1, we have felt guided to each home and neighborhood we have lived in.  It has become quite obvious to me all the amazing people we have met and the associations and friendships we have made.  I have been in awe over and over again by the out-pouring of love and support from my sweet neighbors, friends, and family.  Being sick in bed is a lonely place to be.  Yet I can’t believe how many people have stepped in to bring meals, cards, treats, flowers, words of encouragement, etc, etc, etc.  It’s amazing how even a text of from a friend just checking in can buoy my spirits.  Although I have always striven to befriend and serve others, my small contributions seem unworthy of what we have received in return.  I know this is not a typical scenario for many people in similar conditions, and I am beyond grateful for the good hearts of so many incredible people that I am lucky enough to call friends!

3.      Swimming.  As we met with my doctor repeatedly last winter, he reiterated the need to exercise and the benefits of swimming (horizontal positioning with lessened effects of my enemy, gravity).  At the time, however, there was no way I could make it to a swimming pool, actually swim, and make it home again—it was just out of the question.  So we started discussing putting in our own pool.  Despite my initial hesitancies, having a pool has been a source of joy in my life.  Although I’m not able to swim with my kids often (due to the commotion and my lack of robust processing skills), I’m grateful that it has brought fun family time to our house all summer, especially where I could not get out to take my kids on exciting summer adventures.



The pool has been great for me physically.  When I first started swimming I would swim a lap, float for a few minutes, swim a lap, float.  Now, on good days, I can swim for 30 minutes straight (not fast or hard, by any means, but still a great accomplishment).  Any amount of muscle tone is great to help increase my circulation, and I have noticed the positive effects.   

Additionally, the pool has brought as much emotional strength as physical.  My happy place used to be riding my bike around a nearby lake, getting the exercise endorphins, and taking in the vistas of the reflective water with a gorgeous mountain backdrop.  It was hard to give that up.  But I now have a new happy place!  Floating in our salt water pool, gazing up at the beautiful evening or night sky with no distractions has truly brought a sense of zen into my life.  Although I’m currently going through withdrawals now that we have closed the pool up for the winter, this has been a huge blessing in my life.

4.      Renewed Hobbies.  I have always been a go-getter and a person that needs to feel productive.  One of the hardest things about my illness has been my inability to get up and do things.  However, being stuck in bed has also brought about new (or renewed) opportunities.  I have picked up some old hobbies that I haven’t had time to focus on for a while, such as writing (for myself, not just for work), crocheting, and listening to audiobooks.  I shouldn’t mention the hours I also spend on less productive phone apps such as Netflix, Facebook, or Candy Crush, but I am, nonetheless, grateful for these forms of mindless entertainment and distraction when my body and brain aren’t capable of much else.  Additionally, Facebook at least gives me a glimpse into the outside world and keeps me in touch with all the amazing people I never get to see anymore.  So while I’d rather be out of bed doing other things, I’m grateful for these hobbies and distractions that have kept me sane this past year.

5.      My husband is incredible!  I can’t create a list of blessings without including my amazing husband.  Although he was previously used to doing more home-based tasks than a lot of men I know, he has had to take on so much more the last year—including all of child chauffeuring, cooking, housework, laundry, bedtime routines, and much, much more.  Not only is he taking care of the house and kids, but he’s had the extra burden of caring for me as well. 

Mr. Amazing putting kids to bed.


I think back to what a na├»ve college student I was when we got engaged and married.  I knew Kelly was a good man and that I loved him, but I had no idea how incredible he really was.  Once again, the Lord was watching out for me then and now!  I’m grateful for my extraordinary husband and his tireless work to help me and our family without complaint.


Obviously my life is not perfect, we don’t often have all our ducks in a row, and there’s a lot of things I still regret missing out on.  However, despite the dread I have been feeling about the anniversary of my illness, there is still a lot about my life that I can celebrate!  And despite the long length of this post, this is just a small part of a much larger list of blessings.  Just writing this all down has, indeed, filled my heart and changed my views as I’ve taken a closer look at everything that is going RIGHT in my imperfect life.  I have an awful lot to be thankful for!  Happy Anniversary!   

Sunday, September 11, 2016

I Can Do Hard Things (Accepting the Adventures I'll Never Have)

I have been feeling awfully nostalgic lately.  I somehow feel homesick, even though I am home and surrounded by my family.  I think it is a mixture of a few things: 1) My youngest kids (twins) started kindergarten last month—reminding me how fast time is going by.  2) Those darn Facebook memories keep popping up in my feed to remind me of “better” days that were not all that long ago.  (Although, I really do love seeing the Facebook memories, especially because my twins as toddlers were so stinking cute.)  3) I am coming up on my year anniversary of being homebound and often bed bound with POTS (Postural Orthostatic Tachycardia Syndrome).  


When I got sick last year, I never imagined that a year later I wouldn’t be back to my old self.  Even though I knew what the prognosis was, I was sure that I would be the one to defy the odds and see a miraculous cure (note: over a 7 year Mayo Clinic study, only 18% of POTS patients recovered).  Yet, here I am, a year later and not a whole lot better--I have seen improvement, but still very disabled. 

I feel like everyone is in the fast lane of life—my kids keep getting older and bigger without my consent.  Yet, I am stuck in the slow lane, also getting older (and bigger, as weight gain is an unfortunate side effect of taking steroid medications and being fairly sedentary).  It seems that I am going at snail’s pace with my hands tied behind my back just trying to keep up.

The days are long, but the months fly by.

I know when looking back at the past there is a certain element of seeing through rose-colored glasses —I mostly remember the fun times and happy moments.  The years of infertility followed by postpartum depression, sleepless nights being up with colicky babies, and the countless mom fails of my past seem to have dimmed and blurred a bit.  It somehow doesn’t keep me from looking back and longing for what once was. 

Just a few weeks ago one of my aforementioned Facebook memories popped up reminding me that six years ago I ran the Hood to Coast 200-mile relay race.  I remember it being so hard, but feeling such a rush of accomplishment.  In all honestly, I never really enjoyed running, and I probably wouldn’t do the race again whether I was healthy or not.  But the point is, I was physically ABLE to do it.  I could push myself physically, even though it was hard.  I miss that!


That same year I pushed myself to do a lot of things I had never done before.  For example, I went on a four day back-packing trip to the floor of the Grand Canyon and back out.  Other than childbirth, this was one of the most physically taxing things I’ve ever done (which has a lot to do with a sprained knee, a rainstorm turned blizzard, and a 12 hour hike the last day up steep, muddy/icy trails in said blizzard—great story for another time!).  But I was still able to push through and do it!   

That year has been officially dubbed our “Year of Adventure.”  We worked hard, played hard, and accomplished a lot of goals.  My husband and I went to Hawaii and body boarded, rode bikes down the volcano, snorkeled with sea turtles, zip-lined over the rainforest, and hiked O’heo Gulch past the seven sacred pools and through a bamboo forest to reach the amazing waterfall at the top.  (It really was as magical as it sounds!)  We took our kids to Disneyland.  We went hiking and went on weekly family bike rides around a nearby lake.

I’m saddened to think that there is a very real possibility that I may never be able to do these things again.  The many future adventures I’ve dreamed of may never come to fruition—and after almost a year, I am just now beginning to grasp that reality.
I can still remember vividly one of the family bike rides we went on a few years ago.  My daughter was probably 6 or 7 at the time and on her little purple one-speed bike.  It was several miles around the lake trail we were on and by the half-way point she was more than ready to give up.  Well, at that point you really don’t have much of an option.  Whether you go forward or go back, you have to keep riding because that’s the only way to get back home.  I went slow with her and we took a lot of breaks.  I’d say to her, “Repeat after me: I am strong.  I can do hard things.”  She would look back and say.  “I can’t do it.”  So I would repeat myself again until she finally repeated me as well, and we eventually made it around the lake and back home.

“I can do hard things” has been a family and personal motto for many years now.  As a former fitness instructor, “I can do hard things” often meant pushing my body to its limit and then going beyond.  Any exercise enthusiast knows the only way to become strong is to break down your muscle and let it rebuild.  When you feel the weakest is often when you are making the greatest gains.

Although the five words have stayed the same, this personal mantra has taken on a very different meaning in the past year.  “I can do hard things” in the past has generally meant pushing myself physically.  But the game has changed and I can no longer test my physical limits.  (There IS no pushing through anymore; attempting to do so just means kissing the floor after I’ve collapsed because my body ceases to cooperate.)  Forget the adventures, I can no longer even do most of the mundane things I used to do, like go to the grocery story, pick up my kids from school, deep clean my bathroom (okay, I don’t miss that one!).

Right now, “doing hard things” means NOT doing hard things.  It means letting go of all the things I want to do, and being content with the things I can do.  

As I look back on all my fun memories from the past, I feel homesick for what was as I am still coming to grips with the reality of what is.  I have to admit that my life isn’t all bad now-- I recognize that I have a many things to be grateful for.  It’s just different, and sometimes accepting “different” is hard.    

Some days I feel closer to acceptance than others.  Some days I echo the words of my daughter and say “I can’t do it.”  But then I pick myself up off the floor (literally), and remind myself that emotional and spiritual strength builds the same way as physical; when you feel at your weakest is often when you are making the greatest gains.  So although I am not always successful in my daily battle with POTS and with life, I know I can accept and even be happy in my circumstances because... I know I can do hard things. 

Thursday, July 28, 2016

Burns and Beliefs: Lessons My Kids Learn from My Illness

In Utah the 24th of July is a state holiday-- Pioneer Day.  A day to remember and celebrate our ancestors and pioneers that crossed the plains to settle the Salt Lake Valley.  In terms of celebration, it's really just another Fourth of July-- parades, BBQs fireworks-- the whole shebang. 

Prior to my illness (autoimmune disorder and POTS), my husband and I loved to entertain.  Our house was often the central location for celebrations, parties, and last minute BBQ's.  But, it's hard to try and coordinate anything these days, as I never know if I'm going to feel good or not.  And, even if I do feel good, I can't both prep for a party AND attend the party.  Even if I just attended, I would still have only have about a 30-60 minute limit, until my body tells me it's done.  This has obviously put a damper on our social life.  And, while that is definitely something that I miss, it is certainly not my biggest problem.

This most recent Pioneer Day (just earlier this week) I was faced again with the crippling reality of the things I DO miss the most.  We opted not to host any parties, just our own small family.  My husband pulled the propane fire pit into the driveway so we could roast marshmallows.  We followed that up with some small fireworks, including sparklers.



My kids, especially my five year old twins, were loving the sparklers.  They were getting especially creative in their ninja fighting stances while wielding the flaming sticks.  We had given them all the safety tips, and they were doing a great job.  Unfortunately, they were in their jammies and bare feet because their parents (mom fail!) didn't have the foresight to have them put on shoes.

I'm sure you can see where this is going….Long story short, part of a sparkler fell and my cute boy, Jack, ended up with a third degree burn on the bottom of his foot.  (I'm now wondering why I have not previously questioned the sanity of  taking a short stick burning at 1000° with sparks flying everywhere and handing it to a young child…)


My poor boy started screaming and shrieking like I have never heard before.  It was awful! 

Now, one of characteristics of my condition is that I overproduce adrenaline.  Noise, light, movement, and stress all contribute to my over-stimulation and adrenaline surges.  Even without provocation sometimes, my adrenaline will shoot up.  When it hits a certain level it actually puts me in a seizure-like state.  I collapse to the ground and start shaking and jerking uncontrollably and become unable to talk or communicate -- often for anywhere from 20 minutes to two hours.  At one point these massive episodes were happening 6-8 times a day.  Fortunately now, with medication and a lot of life modifications (i.e. I never go anywhere or do anything), it's down to a few times a week.   

Well, I was already hitting my limit for the evening when the accident happened.  As you can imagine, I quickly hit overload.  I'm usually the calm one in an emergency, but I turned into a mess.  I couldn't do anything.  I couldn’t run to my son.  I couldn't help him.  I had to rely on my husband to scoop him up and rush him inside, grab some ice, collect his wallet, help move everything out of the driveway so he could back the car out of the garage and take Jack to the hospital.  The whole while Jack was screaming like a banshee.  And, I was helpless.

Not only helpless, but a liability.  My husband could see I was about to crash.  He was worried for me, but had to leave.  He yelled to our teenage son, Andrew, to help me into the house.  I stumbled inside in a daze and somehow made it to my room before crashing.  It was devastating.  Not only could I not go to the hospital with my son, but I had just left the rest of my kids, who had also viewed this traumatic scene, to fend for themselves. 

I could hear James (Jack's twin) upset in the other room.  I couldn't help Jack, and now I also couldn't comfort James or my other children either.   The overflow of stress and emotions did not help my physical situation.  I was so angry-- angry at myself for not making my kids put shoes on, angry at my illness, and angry, once again, that I couldn’t be the mom that I wanted to be-- that my kids needed me to be. 

In the past year, I have grieved a lot over my situation.  I will feel like I finally hit a point of acceptance of my circumstances-- where I am able to appreciate all the many blessings I do have and feel happiness and joy again.  But, then something comes along to regurgitate those feelings of saddness, anger, and inadequacy and I have to fight my way back to peace.

It's been a few days since this incident and I've fortunately been able to regain some perspective.  (It helps that my son is doing well and healing nicely).  I've had a lot of time this last year to reflect on my inadequacies as a mother and wife.  This most recent incident has brought those thoughts to my mind again.  Here are some of the questions I've asked myself and some of my conclusions:

  1. Before I was sick, did I always feel like the best mom?  Was I always the mom I wanted to be?  When I look back through my rose colored glasses at my pre-sick self, of course I think I was a better mom then.  But, if I'm totally honest with myself, the answer is no.  I'm not sure that there is any mom in this world, sick or not, that doesn't feel some kind of inadequacy.  For some reason being a mom comes with a load of love and a load of mom-guilt.  I may not be the same mom that I was before, but perhaps there are other ways that I have improved.  I know that I certainly cherish the time I have with my kids more.  I try to take time to listen to them, snuggle with them, sing them songs, and give them hugs-- because those are the things I can do right now.

  1.  What will my kids learn to appreciate?  It's so easy to take things for granted when everything remains the same.  You often don't appreciate something until it's lost.  I think I have an interesting perspective because I am a mom that became ill in my mid-thirties, but I also grew up with a mom who became chronically ill in her mid-thirties.  So, I can see both sides.  I know what it is like to have a chronically ill mom.  I remember times when I resented my mom's illness.  I was upset when she didn't come to my vocal competition or a dance performance.  However, I also remember the things that she did attend, and I remember how much more it meant to me that she was there.  I knew it was hard on her and a sacrifice for her.  While I am sure there will be things my kids resent because of my limitations, I hope that somehow this can also help my kids gain a better appreciation for life, for the things we CAN do, and for the sacrifice of others.

  1. What are my kids learning from this?  As parents we don't want our kids to ever have to face hardships or trials.  And yet, it is those hardships and trials that mold us into the people we are.  In addition to my current illness, I have suffered from trials such as endometriosis, infertility, post-partum depression and the loss of my mother.  While, I wouldn't choose to go through any of those experiences again if I had the choice, the lessons I have learned from each of them have been invaluable.  I have learned compassion for others that may be suffering similarly.  I have received service and kindness from others that has made me want to serve and show kindness in return.  I have learned to rely on my Savior in times when there is no one else that can help.

So, as I lay shaking in my room a few nights ago with Jack in the hospital and my other children in distress, I later learned that my oldest son had stepped up to the plate.  He took James onto his lap and comforted him.  They said a prayer together that Jack would be okay.  And, he stayed by James's side until I had recovered from my episode and Jack had returned from the hospital.

Despite not being a fan of life's teaching methods sometimes, I'm grateful that my kids are learning about compassion, patience, sacrifice, and many other good qualities that will serve them well in this life. 

I may still choose to be upset about my limitations at times, and I may not like the extra stress it puts on my family and kids, but I have to equally acknowledge that the greatest trials bring about the greatest growth.  So, not only will I learn and grow from my current trials, but I am hopeful that my kids will too.

Monday, June 20, 2016

Guest Post: Jessica's Story (a mom with POTS)

The following is a guest post by Jessica, a fellow "mommy who can't dance" that I met online through a POTS facebook forum. Reading her story, I see so many parallels to my own.  Wondering what was wrong with me and why couldn't just push through, especially when I am used to doing hard things.  Going from an active life to learning to accept imposed limitations.  Focusing in on what is most important in life-- family.

Not to give away the ending, but I just love what she wrote: "POTS didn’t ruin my life, but it definitely changed it, and not only for the worst.... Without it we may not have the reverence and gratitude we have now for good days or the gentle grace we have for bad ones." 

Words of wisdom, in deed!  Without further ado, here is Jessica's Story in her own words:



Lucky for me, there’s a darling little chocolate shop next-door to my favorite children’s consignment shop. Even luckier: it was a few days after Valentine’s, and the shop had a surplus of heart-shaped delights on sale! My 14 month old daughter, not-quite three year old son, and I popped in for a treat after searching the bins for second-hand shoes while my four year old was at preschool. I bought us a few truffles and found a table in the loft. We sat to watch the Seattle drizzle fall from our cozy perch. I wanted to enjoy the moment, but instead I was feeling weird again. I was a little nauseated; my head felt funny- like I might faint. The next morning I took a pregnancy test (though we were good about our birth control) just to see if that might be it.

Weeks of feeling this way turned into months. I could barely get through the days caring for my three very small children. My limbs were always heavy, and the slightest exertion left me totally out of breath and dizzy. I tried to take naps but could barely come-to once I had to get up. I was constantly short with my children and then apologizing: “I’m so sorry I wasn’t patient with you. Will you please forgive me? Mommy just isn’t feeling well…”

I would cry most nights. I constantly wondered, “Is this just how it feels to have three kids? Do all moms feel this way, but I just can’t take it? Maybe I just need to work harder at being a ‘good mom’...”

One night, my little girl was sick. She woke up crying, and I knew she needed a new dose of Tylenol. I ran downstairs to get it, and after I had drawn up the medicine I fainted into a chair. I could feel that I was going to go down. Once I was down, I roused quickly and called to my husband. I felt strange and sick for a few days.

Another night around that time, I got up to help a kid, and by the time I had kissed away the bad dream and laid back down, I could feel my heart slamming in my chest. By that point, I was pretty used to that sensation, but I noticed that my heart beat was alarmingly uneven. SLAM, SLAM, SLAM, pause… SLAM, SLAM… pause, SLAM, pause… SLAM, SLAM, SLAM. “Honey!” I said. My sleepy husband said, “What? Are you OK?” “Feel my heart.” “Woah,” he said. “It’s stopping!” “Yeah…” We were both worried. The doctor was too. “See,” she said. “This isn’t just you having a hard time with three kids. Something is wrong.”

…..

It was a beautiful May day. The endocrinologist’s 15th floor office waiting room looked out over my beloved city. I was nervous to meet the new doctor, but excited to maybe get some help. As had become normal for me, I felt awful: light-headed, exhausted, pain in all my joints, especially in my neck and shoulders. I would often hug the walls when I walked anywhere.

I remember my first round of orthostatic tests. The doctor had me lie still on my back on the exam table for about ten minutes. When he returned, he took my blood pressure and pulse. Then he had me slowly stand up while he took my BP and pulse again. “I’m feeling really dizzy,” I said. “OK. I won’t let you fall,” he answered. “Huh,” he said after a minute. “Your heart just did a very strange thing. Your pulse went up over 50 beats a minute when you stood up. That is not supposed to happen….This could be POTS, and you don’t want that.”  I was at least relieved to know that there was a real diagnosis for all the misery I’d endured for 6 months

I know now, three years later, that he was right. I don’t want POTS--and that is what I have. There is not currently a cure for POTS (Postural Orthostatic Tachycardia Syndrome), and little is known about it. My doctor helped me get started on a treatment plan, and eventually, we brought in a neurologist who also helps manage POTS. But, “manage” is all we can do for now.

…..


My life before POTS feels like a dream now. In my younger days, I was a professional ballet dancer. I know what it’s like to have a body that can perform to the extreme levels of physical ability.  When I had my babies, I did drug-free, vaginal births. I was the fun mom, always having guests, big parties, and epic outings. With POTS, I was struggling just to get basic housework and errands done. I needed help with everything. I hired help for cleaning and cooking. I used grocery delivery services.

I went from constantly having plans and seeing friends to being a hermit. Family members helped with childcare when they could. My kids started having way more screen time and, even as young as they were, soon understood how to spot whether or not mommy was having a “bad POTS day.” It was most difficult on my oldest son because he could remember what things were like before, and he was afraid I would die. Thankfully, POTS will not kill me, and he eventually believed us!

I was a very high-functioning person before POTS came along, so the fall was long and hard. I was forced to endure a crash course in accepting help and, even more difficult, still loving and valuing myself. That therapist I had reluctantly began seeing became one of the best parts of my treatment plan, and I HIGHLY recommend that anyone dealing with chronic illness make counseling a part of her new life.

It was difficult for me to talk with people about my illness; I didn’t want to become a burden, and I didn’t want to be marginalized. I was afraid people would begin counting me out without asking. But, I had to be honest. I backed out of my responsibilities one by one and left many casual friendships to rust. I couldn’t be everyone’s go-to girl any more. I learned to really love my relationships that were truly equal and restorative. I lost so much, but there were gains too.

Saying “no,” just about killed me at first, but I learned to accept my new state of affairs and used the word more and more often. The value of “no” is all the “yes” it can free up! By saying “No” to my desire to keep up on my housework and people-pleasing, I was able to keep saying “yes” to my children. People would often ask, “Why don’t you just get a nanny?” If I had been bed-ridden all the time, I might have had to do that. I may yet need to do it in the future. But, I had enough health in me to still be MOM. I let other people do the things that just anyone could do, so that I could be there for my kids. I couldn’t take them on outings, even just down the street to the playground, but I could cuddle, listen, read, draw, play cars, mold play-dough, and do anything else seated! It was very painful and clunky, but eventually we all (me, my husband, my friends, my church) adjusted.

…..


 We were on the last stretch of winding road on our way to our annual church camping trip. I was thinking of baby names. Being pregnant again sounded like a crazy, crazy idea. It had been about 18 months since my diagnosis, and things were finally feeling stable. Not great, but stable. “I just can’t shake this feeling of wanting a fourth kid,” I finally blurted to my husband. “Oh. Wow.” he said. Yeah, I knew what he meant! We had always wanted 4 kids, but POTS just made it feel impossible.

After that weekend of camping, talking with my dearest friends and family, we decided to talk to some doctors. They all said, “sounds hard, but not dangerous.” That was all we needed. About 11 months later, Bran was born. From the end of my third trimester until he was 8 months old, I was basically symptom-free! The break from POTS was amazing, and the baby is even more so. There are so many of my dreams that have had to die; I was so glad we were able to still say “yes” to that dream of one more baby to love.

When the POTS symptoms began to return, I was surprised by how hard it hit me. But, at least this time I had some training under my belt in adjusting, grieving, and accepting. Throughout my life, writing has been a great solace and continues to be so now. POTS didn’t ruin my life, but it definitely changed it, not only for the worst. I may have never realized how much I truly love writing, and we may not have the reverence and gratitude we have now for good days or the gentle grace we have for bad ones.

I keep a blog at jeskybera.com. Here are some more articles I’ve written to help those who may also be suffering from upheaval, particularly those dealing with chronic illness.

More of my story:
The Beginning (More about the decision to have Bran)

Coping with chronic illness: (articles by Jessica)


Friday, May 27, 2016

Why Mommy Can't Dance

Spanish-style music was playing in the background.  It was unusually hot for October, but I could feel a slight breeze on my cheek.  The nerves in my limbs were twitching like they wanted to get up and run yet felt like they were being held down by cement.  My eyes were closed, but I could see lights dancing and swirling like waves of fireworks in my head. I vaguely heard a man walk by and comment in my direction, “I guess you can have too much fun.” 

This was me—sprawled out on a table in the wine garden at Disney’s California Adventure Park.  It was the nearest place I could get to after exiting a ride with my kids and sensing I was going to collapse.  It felt like I was in a dream. I had no perception of time or the fact that I had been non-responsive for over two hours.  

The paramedics that huddled around me were prodding me and asking me questions, but they seemed so far away and I was just too tired to answer.  Too tired to open my eyes.  Too tired to move my leg that had fallen asleep some time ago.  In the back of my head I could hear a frantic voice whispering, “Something is very wrong!”  But at that moment I was just too tired to even care.

Little did I know that this incident was the beginning of an illness turned disability that would change my life. 

Postural Orthostatic Tachycardia Syndrome (POTS)
So what was this mystery illness? Postural OrthostaticTachycardia Syndrome, also known as POTS.  As my doctor explained, upon standing my heart rate increases much more than is normal.  While this is a defining characteristic of my condition, it is not just my heart rate that is altered.  POTS is a dysautonomic disorder.  It affects the autonomic nervous system, which controls our bodily functions that we don't usually have to think about, like heart rate, circulation, blood pressure, breathing, digestion, temperature, hormone production, etc.  POTS can be triggered suddenly by a trauma or viral infection, as it was in my case. (I’d had a sore throat for a week and been under a lot of stress from work as we embarked on our family vacation.)

While many of my symptoms are present all the time, they are amplified when I'm sitting up and even worse when standing.  Because of poor circulation and low blood volume my brain suffers from not enough blood and oxygen. My symptoms include brain fog, dizziness, migraines, chest pain, nausea and other gastric issues, temperature control problems, and extreme fatigue and lethargy.  I get overstimulated quickly-- movement, light, and especially noise really affect me.   Additionally, my body overproduces adrenaline, causing intense tremors and muscle spasms. 

Overnight I went from being a relatively healthy, active person to someone who could barely get out of bed.

Chronic Illness Affects the Whole Family
I have always been a go-getter and an overachiever-- from dancing 4-6 hours a day and attaining valedictorian in high school to an adulthood of teaching group fitness classes, owning and operating a small business, and being a wife and a mother of four.  To lose my mobility and functionality was devastating.

This condition was not just life-altering for me, it affected my whole family.   I could no longer take my kids out for the adventures we loved, like going to the children’s museum or hiking in the mountains.  I couldn’t go to important events like music concerts, dance recitals, or preschool programs.  And the day-to-day limitations were even harder to accept.  I could no longer make dinner, help kids with homework, or get them ready for school or bed.  I oftentimes could not even get myself out of bed without collapsing. (My husband has found me on the bathroom floor more times than I care to admit.)

I was battling to come to grips with my new reality. But I was not the only one.  My kids were also struggling to comprehend why I couldn’t do what I used to do. 

Our family has a tradition of taking turns sharing good news and bad news each night at dinner.  The nights that I could make it to the dinner table, I noticed a trend in the news my kids shared.  My four-year-old twins started repeating the same news night after night.  “My good news is that I love mommy.  My bad news is that I miss mommy.”  Even my 10-year-old daughter would say, “My good news is that mom was able to come out for dinner.  My bad news is that mom is still sick.”

I have vivid memories of a meltdown my daughter and I had one evening as she was preparing for her dance recital.  She came into my room so I could do her hair, yet I couldn’t even sit up on the edge of my bed long enough to do it—let alone make it to the recital.

Over the holidays, one of my twins rushed into my room so excited for me to come see the Christmas tree he had helped decorate in the basement.  After five minutes of him tugging on my arm begging me to come, and me trying to explain why I couldn’t simply get up and walk down the stairs, we both ended up in tears. 

These are just a few of many examples.

Mommy Can’t Dance
As a mom, it is no fun to feel physically awful, but it is worse to know that your kids are suffering too.  I hated that my illness was affecting my children.  I needed a way to help them understand that my illness and inability to do things for them or with them in no way affected my love for them.  Additionally, any chronic illness brings with it feelings of helplessness for the patient and the loved ones.  I wanted my kids to find ways that they could feel helpful and loved.  Thus, the book Mommy Can’t Dance was born. 

While this book is near and dear to my heart, I recognize that I am not the only mom struggling with chronic illness.  I hope this book can help other mothers and children that are similarly struggling.

Mommy Can't Dance

Available at:



Support Dysautonomia International
In an effort to further the advocacy and research on POTS, the illustrator and I are donating all proceeds of the book Mommy Can’t Dance to Dysautonomia International a 501(c)(3) non-profit founded by patients, caregivers, physicians and researchers dedicated to assisting people living with various forms of dysautonomia. 
http://www.dysautonomiainternational.org/

Happy Endings?
While I wish I could write a fairytale ending to my personal story, that is simply not the case.  I have found a few medications that have helped, and I continue to pursue additional treatment options through trial and error.  Like many others who suffer with chronic illness, I understand that this may be a lifelong condition.  However, I refuse to give up or give in, and I hope to someday report that mommy can dance again.