Sunday, June 17, 2018

It's Father's Day

To those of you who grew up without a father or with an abusive father: celebrate how strong you are.  You learned early that life wouldn't be easy and yet you survived! 

To those of you who are raising kids without a father:  You are enough!  You don't need the father of your kids to be a great mom!  Hang in there, you've got this!

To those of you who have an amazing dad: Celebrate him! You have a gift that is worth celebrating.  Your dad helped make you who you are and that is amazing!

To those of you who have lost your dad:  It's okay to grieve.  It's okay to celebrate.  Do this day your way, with no guilt.  You are amazing.  Losing someone that important is hard.  Hang in there and you will be stronger in the end. 

To those of you who are great dad's:  Way to go!  Keep it up!  Those kids need you, no matter how old. 

To those of you who are dad's to someone else's kids:  You are amazing!  Those kids are better off because you are in their life.  It's okay to be celebrated by them, even if they choose not to celebrate their biological dad.  Don't feel one ounce of guilt that he isn't there, instead just celebrate the gift you have been given.  He made his choices and you made yours and you are in a much better place than he is. 

Friday, June 15, 2018

Who Writes This Stuff?

I started this blog introducing my girls.  Although the dynamics of our lives have changed quite drastically over the last several years, my family is still my biggest joy.  So, let's begin the reintroductions.  But this time, I'm going to start with me...

I have always tried to be invisible.  This blog helped me realize I didn't have to be.  It also helped me find joy in the everyday.  Then I got bogged down with life, feeling like nothing ever changed for the good, struggling in the day to day because I was facing what seemed like insurmountable grief.  Simultaneously I began a journey with physical illness.

I was also trying to compartmentalize my life way too much.  I had a public blog about my family, a homeschool blog, a girls scout blog, a private blog detailing some struggles MJ (aka Butterfly, Milah, Miracle) was having in her teens, a secret blog detailing the abuse I had endured and was processing through.  Way too many separate things for me to juggle.  But my life was also that compartmentalized.  There were people who only knew me through the girls and people who only knew me through homeschool.  Most of those people didn't know about the struggles MJ was having battling an eating disorder and even less knew anything of the abuse I had suffered.

So, I just shut down and quit everything that wasn't essential.  Including blogging.

Almost every human being has been through grief.  Mine was especially hard to process because there were so many losses, one right after another.   I broke my foot.  MJ had a brain injury.  I lost a man who had been a father to me most of my adult life before I was able to tell him how much he meant to me.  Then I lost the woman who was a mom to me since sometime in high school, his wife.  Thankfully, I realized and shared with her how much she meant to me before it was too late.  Then I reconnected with my dad, a man who had married my mom and adopted me when I was 4.  We lost touch when he and my mom divorced when I was about 6.  We reconnected and less than two years later he was gone as well.

So very much grief hit me all at once. One thing piled on top of another.  I shut down.  I stopped accomplishing anything.  I couldn't get rid of anything because I was so scared I would get rid of the wrong thing and my life would fall apart.  But the holding on to things is what made my home and life a shambles.  Ironic, isn't it?

Last spring, we were forced to move and I was therefore forced to drastically downsize.  I gave away and threw away 3/4 of my belongings.  I still have too much stuff and I'm working on getting rid of more.

And the illnesses... it seems there was one diagnosis after another.  First, I was told I had an autoimmune disease, not entirely specified but likely Systemic Lupus Erythematosus, SLE.  I slowly adapted to that and all the symptoms that began showing in my body; the fatigue, the hives, the sensitivity to sunlight, the all over achiness, the vitamin D deficiency, the potassium deficiency, the recurrent kidney infections, etc.  But then some of my symptoms didn't really fit Lupus so they added another probable of Sjogren's Syndrome, SS, and I began dealing with other symptoms, mostly related to my heart; swelling feet and hands, shortness of breath, water retention, but also dry eyes and mouth like nothing I could have imagined. Not long after, I also developed Secondary Raynaud's.  Secondary Raynaud's doesn't just make your extremities cold like primary Raynaud's.  It also causes the nerves in your extremities to misfire.  I end up with blisters on my hands and feet after hours of nonstop nerve pain.  Not fun.  And then the diagnosis of arthritis.  Kind of to be expected given all the injuries I had in the past.  I settle in and think this is all I have to deal with, until this past winter.  I was diagnosed with encephalopathy.  That is a post of its own for another day.  Suffice it to say, it sucked the wind out of all of us.

Oh, and I never really told anyone that I have two mental illnesses. I have DID and cPTSD.  Both stem from trauma as a child.  cPTSD, or Complex Post Traumatic Disorder is caused by early and repeated trauma by a caregiver and is characterized by all symptoms of PTSD plus an inability to form identity and sense of self.  It also includes feelings of hopelessness, worthlessness, and helplessness.  DID, or Dissociative Identity Disorder, is caused in much the same way and at its' most basic description, it caused me to be unable to fully form a single self.  Plus, most of my physical problems can be linked to childhood trauma.  People who have DID or cPTSD are more likely to develop autoimmune disease because of the way the body processes ongoing stress at such a young age. And the encephalopathy is likely a direct result of repeated head trauma as a child.

So, here I am, realizing I'm back to blogging for now, putting everything out on the same table, no more compartmentalization.  But I'm also not committing to daily or weekly or any specific schedule.  I can't handle that kind of expectation right now.  I will do what I can.  I will write when I find words.  It won't always be pretty, but it will always be truth.

Wednesday, June 13, 2018

Bits of Good

Angelica's surgery went well. 

Yeah... that's all I've got. 

Friday, June 8, 2018

Long (and Long Overdue)

We are having a bit of a rough time.  Honestly, it seems we can't catch a break.  We had a very difficult 2017 but things started looking up at the end of the year and for the first few months of 2018, I thought we were on an upward curve.  The upward curve didn't last and I now recognize it for what it was, a reprieve.  A much needed reprieve that I am very thankful for.  A necessary reprieve to allow us to catch our breath.  But that has ended and we are back to struggling. 

A bit of history, since it's been years since I have written out my thoughts here...

This time last year, MJ and I were officially homeless but staying with Angelica while she recovered from brain surgery. Angelica was facing a looming deadline to move by the end of July because she was no longer a student at NCU due to the time needed to recover from the surgery.  We were, collectively, $11,000 in debt and none of us were capable of working; Angelica for obvious reasons, MJ because of mental illness, and me because the autoimmune diseases I was just becoming acquainted with when I stopped blogging so long ago have overtaken my body making daily living a struggle. 

Angelica and I rented a house on August 1.  MJ decided to move to MN and live with us mid September.  So, no longer dealing with homelessness.  Our car broke down in August.  A friend bought us a car in December.  Angelica's brain is healing, she was able to work again, skating again, and anticipating going back to school when the neurosurgeon signs off, likely this coming January.  We have paid down approximately $3000 of the debt.  It's a start.  MJ went to a hospital that helped her immensely and was able to hold down a job for about 2 months after getting out. 

So, rightly I thought we were on an upward curve but the roller coaster of life has taken some unexpected turns over the course of this last month and we are once again holding on trying to survive. 

Angelica fell about a month ago and hurt her ankle so badly that she needs surgery, scheduled for this coming monday.  She won't be able to work for at least two weeks, possibly as much as two months.  She will need intensive physical therapy once her foot heals enough to begin.  She won't be off crutches for four months or more.  She works retail, y'all.  So she's on her feet all day.  Going back to work anytime soon isn't in her best interest.  But she will.  Because she has an amazing work ethic.  Because she has a sense of responsibility for family like no one I have ever known.  Because she is the only one of us currently able to hold down a job. 

If her foot doesn't heal properly, her skating career is over.  The dreams of reaching the olympics shattered.  Did I mention she was skating when she fell?  That she was working on a new jump and landed so horribly that she tore two ligaments in her left foot?  Did I say that the doctor said a minimum of four months before she can get on the ice, minimum of six before she can really begin training again?  Possibly longer before she is back to her pre injury level? 

Did I mention that last year at this time she was recovering from brain surgery that kept her off the ice for three months?  Odd isn't it... that foot surgery is going to take longer to heal than brain surgery... Well, not completely, but as far as skating goes it is.  You see, her brain is still healing and the anesthesia for her foot surgery could set her brain healing back by as much as three years.  Three years, y'all.  I don't think she knows this yet so if she reads this post I will be dealing with a meltdown.  Sorry Angelica. 

Add to that the list of things we need to buy for her healing, while she isn't working, just keeps getting longer.  Saran wrap for bathing to keep the foot dressing dry until it is removed, minimum two weeks, possibly four.  That's a lot of saran wrap people.  An iwalk crutch, to minimize misalignment and other possible muscle strains while she is recovering.  A shower stool because she can't even accidentally put pressure on her foot after surgery.  Compression socks.  That's $250.  One week of pay.  That she won't be earning but we still need. 

MJ is also dealing with her own struggles.  MJ has DID and cPTSD.  She is struggling to survive, has only been able to hold down a job for a few months at a time before spiralling downward and needing to quit and be hospitalized.  She has been through so much trauma, more than most people can imagine.  If you can imagine, I'm sorry.  I'm sorry because if you understand, you or a loved one has lived it. 

We are trying so hard to keep her stable enough to stay out of the hospital until we can get her back into a hospital that specializes in dealing with her disorders.  A last minute plane ticket will cost us about $500.  I spent 5 months basically begging family and friends on social media to help with finances last time she was hospitalized there.  I can't do that again.  I don't have the emotional strength.  I set up a paypal account when she was strong enough to work.  She was hospitalized a few weeks ago for about a week... a hospitalization that added to her trauma rather than helping her heal.  Plane tickets to get to and from that hospital depleted all she had been able to set aside.  I have no idea where the plane tickets are going to come from this time. 

That leaves me.  In addition to the Lupus, Sjogren's, Secondary Raynaud's, and arthritis, I am now dealing with encephalopathy, a big word that means brain damage. I was officially diagnosed in March but we've all be noticing symptoms since fall. They can't tell me what caused it or even anything more specific to call it.  They have a most likely scenario of CTE, but they can't confirm that while I'm still living so we stick to encephalopathy.  A big word that means I am slowly losing my mind.  A big word that means I can't remember things.  A big word that means I struggle to express my emotions, or rather struggle to not express them, to control them, to express them in socially acceptable ways.  A big word that says I am confused easily, tired often, and live with a constant headache.  A big word that says it's only going to get worse from here.  Encephalopathy that is likely a result of the years of abuse I suffered as a kid.  Abuse that left me with cPTSD and DID as well.  But I have learned to manage those symptoms and process through the memories of trauma. 

So here we are, trying to navigate multiple illnesses and trying to dig out of debt, trying to be thankful for where we are and look ahead with hope. 

I know people who would say that all these things are because of sin.  That if we managed our money properly we wouldn't be in this place.  But here's the thing, we were managing our money and yet barely surviving financially when the girls medical issues drained my accounts and necessitated using credit to cover basic needs and expenses not covered by insurance.  That's not bad money management.  It's just bad luck. 

I know people who say that if you are serving God, His blessings will follow you and where I believe that, I have come to realize that His blessings don't look the same for all of us.  I can't be judged by how I measure up to you because I didn't start where you did, and we haven't walked the same path. 

I know people who would say that I, we, are sick because of sin or lack of faith.  My sicknesses and MJ's sickness are a direct result of the sins of others, not ourselves.  Angelica's is just  because we live in a fallen world and sometimes bad things happen.  Our sins didn't put us here and repentance of some imagined sin or lack of faith won't fix everything. 

I have faith.  Scads of faith.  I have seen God do miracles.  I have seen Him heal people.  And I have seen Him choose not to do the miraculous even when asked.  His ways are not always understood here on earth.  I asked Him to heal me of the problems that stem from my childhood for two decades and then I realized it's just not something He wants to do yet.  Maybe soon.  Maybe not till I see Him in heaven.  And that's ok with me.  Because I know that even if I don't understand, His plans for me are good and I choose to be content knowing that He cares for me. 

So, here I am, hoping this downward turn doesn't turn into a downward spiral.  Hoping that we will begin heading up again.  I don't know if I'm back to blogging or if I just had this one thing I needed to say, but I'm here today. 

Wednesday, July 20, 2016

Snapshots Through A Keyhole

Five years ago our little family had the opportunity to spend a few days in the home of a friend.  It was the first time we had met face to face.  Something she said in our many talks was that we all really only saw each other in a limited way, like snapshots through a keyhole.  That stuck with me.  I mulled over it and thought about the truth revealed in so many ways in our lives.  It seems the more transparent we become through the use of social media, the less we know about ourselves and the less connected we are to the people in our lives.  

My life has become both more complex and more simple in the five years since.  And I am returning to writing.  Here, in the form of random thoughts put out where the world can see but few people ever will.  I am also writing a book.  Actually I am the "ghost writer" as I am working with a published author under his name in a series he already has an established readership.  In that book, I will tell so many "secrets" about my life, the ugliness that I have tried to shelter everyone I know and love from finding out.  

My life has changed and therefore this blog will also change.  My girls have grown.  So has our family.  The autoimmune diseases I battle have more of a front seat role in my life than before.  Miracle is no longer plagued with problems from her brain injury although she still has many struggles.  I likely won't post much about that here as that is her story, but sometimes with permission I might.  Angelica is off at college and no longer a daily part of our lives.  I have welcomed another family into our lives, thinking of them as my daughter and grandchildren.  

I am still me but I will be less edited here, more likely to share the ugliness in an attempt to find the holiness that God says lives within me.  As a part of that process, I am attempting to combine all of my blogs as a way to take down the walls and stop hiding who I am from those around me.  

Saturday, January 23, 2016

#ButYou'reNotThatSelfish

I want to die.
This isn't a new feeling necessarily.
I have battled crippling depression and suicidal ideations most of my life.
But it's the first time in a long time I've struggled to talk myself out of it.
19 years to be exact.

You see, 19 years ago, I looked down at my little angels looking up at me and realized they needed ME.  And it wasn't just that they needed someone to take care of them, but that I was the person they needed.  Right then and there I made a commitment to not end my life before they grew up.

There have been a couple of times I have struggled in the last 19 years, but I always could look at my girls and find the strength to go on.

Not right now, though.

And it's not that I think they don't need me anymore.
I know that I know that they always will need me, their mom, to be there ready with my love, guiding them through the next step of life.  Usually that's enough.

Not right now, though.
I'm tired.
I want to ....
.... quit....
.... curl up in a ball....
.... sleep...
.... I keep trying to find a word that I can put in the place of "die" to lie to myself just long enough that I will be OK again.  But nothing fits.  Nothing is quite right.  Nothing, that is, except die.

So, I broke down about a week ago and told a friend just how much I'm struggling.
And that's when she said it.  "But you're not that selfish."

So, let me tell you why I AM that selfish, and why that's a good thing.

I don't want the last thing I do to be viewed as selfish.
I don't want to be remembered for causing someone that much pain.

And because of this, I will fight to find the strength to face another day.  I will struggle to come up with a word that is a good enough lie that I believe it until I can be OK again.

Because #IAmThatSelfish.

Friday, May 30, 2014

My Day - #462-470

Miracle's home.(#462) Angelica went to pick her up before watching the girls this afternoon. (#463) The plan was for Miracle to stay upstairs and get some things done while Angelica babysat.  Busy Bee would have none of it.  Busy Bee wouldn't let Miracle out of her sight.  She was so excited to see her. (#464) So Miracle babysat the girls today and Angelica came upstairs.  

There were lots of bumps and bruises today.  First, all four girls went to the splash pad, which we do almost every day without incident now that summer is here.  Today, however, the little girls bumped into each other and Doc lost a tooth.  As in, came out of her mouth and we can't find it.  The good part is that it was a baby tooth, likely ready to come out. (#465) Doc was quite upset about it all.  Then they came home and watched movies before heading to the park to play.  I love summer! (#466) As soon as they came back in the house, Doc bumped into the wall and has a knot on her forehead.  She is a little wobbly but passed all the neurologic tests they would have run at the hospital. (#467) Both my girls having neurologic issues when they were younger came in handy because I have watched the doctors do a neurologic exam so often I knew what to do and what to look for. (#468)

Now they are both making lists for camp next week.  And enjoying each other's company. (#469) And Miracle is dyeing her hair again.  You would think after such a long week we would all be headed to bed.  But it feels SO GOOD to be together again. (#470) I don't think any of us want to waste a moment of this weekend.