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7.25.2016

Pondering an Unexpected Coincidence

I just returned from Mended Little Hearts's third annual CHD Symposium and am, overall, energized and excited about the things that are coming.  I saw friends of old, met lots of new people, helped shape conversations about the needs and desires of the larger body, and made suggestions that people indicated were helpful and spurred potential chance and work in various areas.  I was feeling like a catalyst for good and for change and was so excited that I felt well enough to go and that I had two wonderful women to carpool with so I was able to make the trip.  We are making plans to expand our local group with me taking on a larger role and potentially even a coordinator position depending on how the current leadership votes.

The odd part came when I recognized one of the speakers as someone I had attended school with, who was part of a group of people that had managed to make middle school and high school very difficult for me.  The speaker spoke about a topic that I wanted to ask further questions about, but I couldn't do it.  In that moment, I again felt like a teenager and all I could do was hope that the person did not see me in that room of 122+ attendees and speakers and, if they did, they did not recognize me.  I considered emailing the person, but I became concerned that even emailing might reveal my identity.  I thought long and hard about what to do, but it came down to this.  Medical care is all about trust.  You must trust the providers, procedures, medications, devices, etc. every aspect of care when it comes medicine.  This is doubly true when it comes to your children.  And I simply cannot trust this person.  I cannot trust that they will not remember me; that they would not do something to spite me. I realize that this says more about me than it does about them, but it doesn't change how I feel.

At the same time, they may very well be a different person now than they were in high school, so there is no reason to destroy the trust others have placed in this person over actions they made when they were a teenager. And although I do not trust this person, I remember that they are smart, and I can trust that.  So, I will not cut off an avenue of treatment for Mira simply because I had a bad experience with someone in high school.  So I will not reveal who they are.  And I will not reveal this person's actions to Mira.  If Mira should come across this person in her care as an adult and feel she can trust them, that will be her decision to make.  I will not make it for her.  But for the next 13 years, while it is my decision to make, I will look for an alternative way for her to benefit from the topic without having to directly contact the speaker, whether by using Mira's own care providers as go-betweens, or finding another solution.

But in the meantime, this unexpected coincidence has left me pondering.  If there are no coincidences, why did this happen?  Why did this "safe space," this place where I have found meaning and purpose, become sullied by the taint of old high school memories?  Maybe it's something as simple as an opportunity to let go of some of this emotional stuff that's still hanging on. Honestly, though, I'd have rather it just stayed buried.

5.03.2016

Value

Something I haven't been sharing on here recently is my health struggles.  Beyond the depression and anxiety, last October or so I began to have back problems.  I have had different types of back problems throughout my life, but this time, they have been much worse.  Between x-rays and MRIs, doctors have found any number of things that could be causing the pain, but so far nothing has helped.  On top of that, my doctors think I may have fibromyalgia, which would explain the fatigue, body pain, brain fog, word recall and memory issues.

Because of these myriad physical issues, I have been out of work from my primary job since mid-March.  Unfortunately, I am nearly at the end of my employer's ability to wait and hold my job for me while I get better.  I have four appointments in the next week to try to come up with some new avenues to consider, but I've got a deadline to be back at work in order to keep my job, and I don't think I'm going to make it.  I am terrified.  Having a job to return to has been both a safety net and one of my motivations to get better.  I love my job.  I want to go back.  Work gave me a sense of purpose.  I was helping people.  I was good at it.  It helped push me forward through my therapy and depression last year, knowing my work family was waiting to warmly welcome me home.  Now, I have to face the very real potential of the loss of this motivation and safety net.

This week, I was forced to admit that my mobility is much more limited than I wanted to believe.  My doctor wrote me a prescription for a wheelchair, which arrived yesterday, and I received my handicapped parking permit today.  My pain medications render me unfit to drive.  If I know I have to drive, I don't take them, but then the pain renders me useless for much of anything.  Now that I have the wheelchair, doing the occasional errand or getting to doctor's appointments is easier because I don't have to walk or stand, but lifting that bugger into and out of the car (sans pain meds) means that, at best, I can only do two errands a day.  I have been unable to ferry Mira around to school and gymnastics, do laundry, make beds, load and unload the dishwasher, clean the house, etc.

Phil has really stepped up, and he is positively amazing, but he is burned out and exhausted.  He has to do not only most of the work a single parent would, but take care of me on top of that.  He has earned all the "good hubby" and "good daddy" points that exist and then some.  Lord knows he has lived up to the "for worse" part of our marriage vows these days.  But I hate watching the light die in his eyes.  I hate seeing how tired he is from trying to do it all.  And I hate that I feel powerless to help.  Instead, I feel like a giant time and energy suck.  Spending my time trying to mentally overcome physical pain just results in physical, mental, and spiritual exhaustion.

Because I feel as though I am of no use to my family or myself, I have begun trying to figure out what makes me valuable.  When I was growing up, I struggled to make friends and often felt inadequate or worthless, but I knew I was smart.  I knew I was good at school and nothing those people ever said about me could take that away.  I measured my value with every "A," every "summa cum laude," every advanced degree I could achieve.  I had value, and I knew it.  I could see it.  It was tangible and measurable.  Now, I am very likely about to lose my favorite job in the world and may no longer have the ability to do a vocation for which I am still paying off student loans.  As I stare at the approaching precipice of job loss, I am trying to determine what else gives me value.

Sure, I can provide love and hugs to my family, and with my wheelchair, I can now contribute to more chores around the house.  But does what I have to offer offset what it takes for them to care for me?  Sure, Mira loves me, and I can give her only the things a mom can, but is she going to resent me because I can't go out and play, or run around, or do all of the things I used to do with her?  I set a goal to complete half-marathons in honor of Patrick.  Ultimately, with enough training and weight loss, I may be able to do them in a wheelchair, but I feel like a failure for having been unable to complete this small gesture to honor his memory.

So, what makes me valuable?  The easy answer is I am a child of God; that God saw fit to create me gives me value.  That helps me spiritually, to some degree.  It reminds me that I have a purpose, and I am here for something, but it still doesn't tell me why I matter.  Why should Phil stay with me?  Yes, he made a promise, but people do that all the time.  Now that I am no longer an equal partner and participant, why should he stay?  All I do is make his life exponentially harder.  He reassures me that he's in it for the long haul, and I try to believe him.  But, unless I can figure out a way to feel valuable without needing his reassurance, I'm going to end up sucking him dry, and it will be a self-fulfilling prophecy.

I think one of the reasons it is so difficult to figure out why/how I am valuable is that I have always used the measuring tools of the "powers and principalities."  Can I work?  How much do I earn?  Am I attractive?  Am I capable?  Am I able/fit?  These are not the reasons I want to value people, and now that I have no value under these standards, they are certainly not how I want my worth evaluated.  So, here's the list of characteristics that I have that I think give me value.

1)  I'm strong.  I've been through a lot of stuff and I am still going.  I haven't given up.
2)  I'm empathetic and a good listener.  I know lots of people who either are going through or have gone through rough times.  I provide support by helping them feel heard and, when asked, helping them problem-solve or come up with a plan to overcome issues.
3)  I'm funny.  This one took me a long time to figure out, mostly because my brother was SO funny, I couldn't see my own skills until I was out and about on my own.  I can make people smile.  I can usually get Mira to come out of a frump and turn things around to "find the fun" as Joy says in Inside Out.
4)  I'm a great planner.  Even with my foggy, forgetful memory, I have managed to use alarms on my phone, post-it notes, and any number of other coping tools to keep myself on track even when basic word recall fails me.  Mostly.
5)  I try.  The other day, it was clear that Phil was done.  He was beyond done (still is, I imagine, but this was a pretty low level).  So, the next morning, I got up and got Mira ready for school.  It took every ounce of energy I had and left my body weak and my pain level around an 8.  But, I knew that I would have the rest of the day to try to recuperate, and it allowed Phil to sleep in and get a little bit of rest before starting his day.  It's not a lot, but I am working hard to show my appreciation and make sure Phil feels valued for everything he's doing.

This is not a complete list--I'm hoping I can still find more value in my existence.  And, if you have additional thoughts (whether for me specifically or for people generally), please share.  But, it's a start.  It's enough to keep me going and feel like I have earned my place in the world for another day. I am still very angry and frustrated that all of this is happening and that I have zero control and absolutely no idea where all of this is going.  But I am doing my very best to use it as an opportunity to learn.  Because I'm smart.  Ooooh.  Look at that,  I get to put that one back on the list. :)

4.06.2016

A New Low

Today was our annual trek to Detroit to get Mira's semi-annual echo and follow up with her pulmonary hypertension specialist.  For once, I wasn't feeling nervous and waiting for the other shoe to drop.  On the way there, I was sure it would be a regular visit, and we would hear the same thing--everything is stable.  No change.  When we got there, they wanted her to have an EKG in addition to her echo.  No biggy,  She's had that before.  After the wires were in place, the tech printed the page. She looked at it strangely and printed another one.  Then she did it again.  I was a little concerned at that point, but not too much.  They took her to the echo room and then said that they wanted Mira to do a 6-minute walk test after the echo.  Something new, but not wholly unexpected.  My memory told me it thought we had talked about this last year.

The echo went well, and Mira did amazing sitting on the bed by herself, not needing to hold anyone's hand.  The echo tech left and was soon replaced by one of the cardiology big wigs, Dr. H., who had helped care for Patrick.  He introduced himself (we're guessing he didn't remember us, which isn't terribly surprising), he took a few pictures, and then left again.  By this time, I was starting to get concerned.  We were placed in a room and waited for her regular doc.  When he arrived, the news was actually good.  Better than good.

The echo issue was really a non-issue.  They noticed that she has a right aortic arch instead of a left aortic arch.  We're pretty sure we already knew that from when Mira had her CT scan with contrast at 6 months.  But, even if this is new information, it just means Mira is more rare--only .01% of the population has it.  It doesn't really cause any problems, so it was just a notation for the record.  But, the good news--the best news, really--is that Mira's pressures didn't just remain stable.  They decreased!!!  Mira's arterial pressures had been running in the 50% range (for normal healthy people, it should be around 20%) since her surgery at age 1.  Today, Mira's pressures were running in the 40-45% range.  Although not a huge change, it is downward movement, and after four years of no movement, I wasn't sure it would ever go down, so this was amazing news!

She passed her six-minute walking test, and we go back to her local cardiologist in six months.  The takeaway--just keep doing what we're doing.  Finally some good news.  I SOOO needed this.  Thank goodness that Mira's pressures have reach a new low!

2.21.2016

Time, Forgiveness, and Holding On

Facebook was showing me memories from today in years past and, as often they do, this one included an adorable picture of Patrick at the doctor's office.


Looking at the date, I calculated that he would have been 28 months old in just over a week.  28 months old.  And I began to wonder, what would he have been doing?

When Mira was 28 months old, I was newly pregnant with Patrick, and she was in the hospital getting her tonsils out.  Would he have needed that?  Would he be walking and laughing and playing with his sister, or would he still be struggling to sit up due to something we thought looked like a twist in his spine that never got fully evaluated because of everything else that happened?  Would he have had a full head of bright, curly red hair like his daddy, or would it have darkened to brown like his sister's?  How many more hospital visits would we have had?  How many more snuggles, smiles, and family hugs?  How is it that these memories feel like both forever ago and only yesterday, but the actual time of two years seems wrong?

My life is so different.  Different both from what it was and what I had imagined it would be.  Every day feels like a new hurdle to climb, but then again, so did every day we were dealing with two medically needy children.  If Patrick were still here, life would not be easy.  We would still be stressed.  We would still be struggling to get by.  That doesn't change that I still wish he were here.  It also doesn't change that when he was here, I often wondered if life would be easier if he were gone.  The answer, of course, was no.  Not really.  Some things got easier, but much of life got harder.

The truth is, no matter what you are struggling with, life will not be easier if it is gone.  It will just be different.  A new struggle will come.  New stressors will arrive.  You will wonder if you did the right thing.  You will second-guess every choice you've made.  It's human nature.  What I am learning--I think--I hope--and what I am trying to do, is forgive myself.  Life is hard enough without emotionally beating myself over the head.  And, what the heck.  Maybe if I write it down, I will actually believe it.  It certainly can't hurt.

I forgive myself
For assuming that it wouldn't happen to us.
For thinking I would be able to handle whatever came along.
For being angry that I didn't get what I wanted.
For wishing things were other than the way they were.
For thinking thoughts that should never be spoken.
For thinking life could or would be better, easier.
For forgetting to take care of myself.
For forgetting to take care of my marriage.
For forgetting to take care of my daughter.
For forgetting that we are not the only ones grieving.
For feeling too much, not enough, or nothing at all.
For forgetting that grief is different for everyone.
For being angry that life goes on.  Without him.  Without me.
For wanting to leave.
For wanting to give up.
For wanting to die.
For wanting everything to have meaning and purpose.
For looking outward instead of inward for solutions.
For forgetting to ask for help, both physical and spiritual.
For being weak.
For not being true to myself.
For being me.
For being human.
Because I cannot ask others to do what I cannot ask of myself.

Hold on.  Tomorrow will come.
Hold on.  There is more love, joy, and laughter yet to experience.
Hold on.  There are memories to remember.
Hold on.  There are sorrows others need to share.
Hold on.  The sun will rise again.
Hold on.  The Son will rise again.

1.18.2016

2016 Word of the Year

have an orchid that a friend at work gave me when I first returned to work after Patrick died.  It lived at work for a while and then had a few different locations in our old house (oh yeah--we moved last year, but that's for a different blog post), but it either got not enough light or the kitties attacked it, and then we moved it to the new house.  That I haven't killed it yet is amazing in and of itself, but whether as inspiration or a good omen, it decided to open it's first flower on the 31st.

See, as is my tradition, I spent part of December 31 figuring out my word for 2016.  My brother-in-law suggested "better," and given how 2016 started off, that might have been a good choice.  Instead, however, I was drawn to "bloom," as in, bloom where you are planted.  The orchid's decision to flower that day is probably what sealed the deal, but part of why I chose it is because I want life to be about more than just making the best of a bad situation.  I want it to be about finding a way to shine and show off my best self no matter what situation I'm in.

Having chosen my word, I have spent the past few weeks trying to figure out ways to move forward on projects and begin to "bloom" myself.  I forwarded my manuscript to an editor to move forward on getting my book published.  I started selling Jamberry nail wraps on the side to earn money for said editor as well as take a step outside my comfort zone and talk to people.  As an introvert who prefers writing to talking, my first home party was terrifying, but it was filled with friends, which was a big help.

And sure enough, as I have moved forward, my orchid has taken off as well.

Seven blooms with roughly 10 more buds left to open!!  I try to look at my orchid each morning, but particularly on rough mornings, as a reminder that I can do this.  I can show my best self and let the world see the fruits of my internal labor.

May this year give you the opportunity to find your best self and let others see what is most beautiful in you. 
#Bloom2016


1.17.2016

Owning Words

Marlo Thomas has written two books called The Right Words at the Right Time, which are compilations of essays by famous people about things others told to them that stuck with and really helped them.  In my own life, I have kept waiting for something like this.  Something to hep me get through all of this stuff the last few years.  And in the midst of my grief and trying to return to normalcy, people have been generous with their words and compliments.  

Phil calls me awesome all the time.  We even have a saying in our house:  awesome looks like tired.  So, if we are looking pretty run down, it must be because we are being awesome.  But the truth is, I don't feel awesome.

The other morning, as I fought through anxiety, hyperventilating, and the feeling of a heart attack, I spent my whole drive to work saying, "I must go to work.  So not drive into the ditch.  I must make it to work.  Do not drive into the ditch."  Later in the day, my mom called me and I was telling her about my morning and she said, "I did call you at work didn't I?"  My mind exploded a little as I realized what I had accomplished.  She called me amazing, and I probably was, but I didn't feel amazing.

I have been called brave and inspiring.  I have been told I'm strong, tough, spectacular, incredible, marvelous, and a multitude of other beautiful, well-intentioned compliments from a wide variety of people.  And I knew what they were trying to tell me.  They were acknowledging all I have overcome.  And I am grateful.  I needed each and every one of those compliments.  Unfortunately, I couldn't own any of them.  None of them felt right on me.

Until a few days ago.  A friend was talking to me and he told me:  There is no question you are resilient.  The moment he said it, something clicked, the lights went on, and the heavens opened.  Like a key that finally opened the lock, at last I had a word that represented overcoming my struggles that I could finally wear comfortably and proudly.  Yes!  I am resilient.  

It was a word that spoke to my own actions and abilities.  I did this.  I worked for it.  It wasn't a big boastful word, but it had substance and authority.  Like finally finding a pair a jeans you want to wear everyday and that also make your butt look good, I was so excited I just wanted to take the word out and show it to everyone.  

Look at me!  I'm resilient!  I'm still standing!  I survived!

So, if you're like me, and struggle to receive or own a compliment, don't give up.  There is a word out there for you that will feel like a second skin.  Keep looking for it.  And in the meantime, know that everyone who pays you a compliment you aren't ready to own just wants you to feel as special as they already know you are.  You are loved.