I Did Not Choose This Journey.

Since my son died almost 15 months ago, I’ve been on a journey.  I didn’t choose this journey.  It began because the Life Path I was on came to an abrupt halt, forcing me to abandon everything familiar and comfortable and find a new route.  A solo route, of sorts. 

You see, my son was my constant companion, the surest compass I’ve ever known.  His life and everything surrounding it may have been full of chaos and unanswered questions, but I was never surer of my purpose as a human being than when I was caring for my beautiful boy.  Every day I was needed and my energy and efforts were specific and direct.  I was caring for my child, in essence keeping him alive.  He could not survive without my constant care, and I was blessed beyond measure to be able to provide that for him as long as I did.  Every morning he awoke to face another day was a humbling experience for me, his mother.  He was leading me through this life, silently guiding me without ever saying a word.  He needed me, yes.   But oh, how I needed him!

The moment he slipped away, although still in my arms, I could feel the change.  My whole world shifted in that moment.  The clarity and sureness of my soul’s purpose suddenly became clouded, like a dense fog slowly rolling in, making it nearly impossible to see. 

I don’t know what to do now, where to go from here….where am I going?  How am I supposed to get there?  How will I find my way?  I don’t even know where I’m going…..what if I don’t want to go??  I walked out the doors of the hospital without my son and my new journey began.  But I had just been stripped of my compass!  What was I supposed to do? 

It felt as if someone had blindfolded me, spun me around in circles and then shoved me out the door and said, “there’s Life….go and live it.  Good luck, you’re on your own!” 

So now I’m here.  I’ve been on a trek…this journey that was forced upon me, I’ve been trying to figure it out, to find my way.  It took me several months to even gather the courage to open my eyes and attempt to peek through the fog.  The air is so thick it sometimes still threatens to suffocate me.  I’m trying to adjust to so many changes… it’s been hard. 

Moving forward into unchartered territory has been somewhat petrifying. Some days I’m still not sure if I’ve even moved at all. I look around me and wonder if I’m in the right place….where am I supposed to be?
— Crissy Dixon

 I’m not lost.  No, I know exactly where I came from and how I got here.  The roads that led me to where I am today have been well-traveled and paved with more Love and Beauty than I know how to describe.  But Pain and Anguish were always traveling not too far behind me.  I knew they were there, could see their reflection in the rear-view mirror. 

As time went on I could feel the gap closing, the distance getting shorter and shorter between us.  I tried to speed up, oh how I tried to lose them!  But like a car running on empty, it wasn't long before I had to pull over and accept the fact that I couldn't go any further.  I had to leave the car behind and start on this new journey on my own. 

It’s terrifying, most days.  Too scared to walk, I began by crawling.  Some days, even that wasn't possible.  Some days, the best I could do was curl up in a ball and wait for another day to pass, for Strength to come and find me and urge me along. 

All along the way I never lost sight of Hope.  I knew that Hope was always somewhere ahead of me, clearing a path for me for when I was ready. 

Today, there are days where I can walk swiftly, powerfully putting one foot in front of the other while I take in the beautiful view around me.  On these days I am amazed at the wonder and possibility that could be lying around each bend in the road. 

On these days I feel my son, my compass, guiding me like he did when he was here in my arms.  I need these days to get me through the rest.  I need these days to help sustain me when I’m in a ball on the floor crying out for everything that once was. 

I can handle crawling blindly through the fog because I know Hope and Strength are out there just beyond my sight, I can still feel them.  I can still feel him, my son.  He is still my compass after all, and I need him now more than ever because really, my journey has just begun.

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I Will Keep Trying.

So, I want to start out by saying how humbled and excited (and nervous!) I am to be writing for the BTG family!  When Ashley asked me to contribute monthly to her amazing blog, I think I said eeek!! about 9 different times before I said yes.  I am honored that she asked me, and I’ll try my best to not make her regret it.

I guess I should start off by trying to introduce myself a little.  I’ve narrowed it down to 4 main things you need to know right off the bat:

1.       I love my kids.

2.       I love Pearl Jam.

3.       I love penguins.

4.       I am addicted to tootsie rolls.

Clearly, these are all very important things……but the first one on the list is by far the most important to me.  I am a mom, a single mom to two beautiful kids, Aubrey and Connor.

My children are my heart; they are my world, my everything.  Eleven months ago, my world was shattered.

I am a mom of two, but I can only hold one of them in my arms. On December 23, 2013, my beautiful blue-eyed boy died from an undiagnosed degenerative brain disease. He had just turned 6 years old.

Let me back up a little bit….

In 2006, Aubrey {my sweet girl} was born.  She changed my world forever---she gave me the gift of being a mother, something I never knew I so desperately wanted to be until I became one.  She’s my BFF and I am so grateful for her.  Then, just 16 months later……her baby brother was born!  Connor was born “seemingly normal” but my mother’s heart told me something wasn't right.   At around 3 and a half months old, it became clear that I was right.  Connor refused to eat anything and was losing weight so we took him in to the hospital to get a feeding tube placed.  It was there that they performed a swallow study that showed that my sweet boy was aspirating---everything he was swallowing was going into his lungs.  He was strictly tube-fed from that day forward.   And then the real search for answers started….my sweet baby boy had every test known to man done, never resulting in anything but “normal”.  Every test essentially came back normal, except that his MRIs showed his brain was atrophying (shrinking).  I took my beautiful boy to the MAYO clinic, and to New York to one of the top neurologists in the nation for diseases of the basal ganglia (the part of his brain that was atrophying most), but we never received any clear answers.  He was labeled as having “a neuro-degenerative disease, coupled with an unspecified movement disorder”.  Vague, right?  The frustration of not knowing could become maddening if I let it……so I tried not to let it.  I tried to just be.  I tried to just love more and worry less.  I really tried.  But I never stopped fighting, or searching.  I never stopped trying.

He was beautiful.  He was perfect.  He was my soul mate and I miss him so much.

My days and nights were spent caring for my sweet boy’s every need.  He required suctioning, through his mouth and nose, approximately every 20-30 minutes during the day, and every hour to two at the most at night.  He couldn't sit up, hold his head up, or go to the bathroom on his own (yay for liquid glycerin suppositories!).  My sweet boy never walked, talked, or even formed a real smile, but oh how his eyes could speak to me!  He could tell me more with one quiet glance than he could have with any amount of words.  Holding him in my arms, I was truly holding a little piece of heaven.  He is the closest thing to heaven I will ever experience here on earth, and oh how I miss that.

Which brings me back to today----the present.  Today, I miss my son.  Today, I struggle to remember how to breathe.

There are days when I truly don’t know if I can do it----I don’t know if I’ll be able to breathe without my sweet baby boy……11 months without him seems like so much longer.  But I’m still here…..and I’m still trying.  Every day I am trying to move forward in a world that is missing part of my soul.  I’m trying to move forward when all I want to do is go back!!  I have my sweet girl and we are doing it together---together we are still living and loving and trying our best.  We laugh together, cry together and remember our sweet boy together.  She misses her little brother, “her Connie”.

I miss my perfect little soul mate.  We are still here.  We are still trying.  We are still breathing.  That’s all we can do.

This year has been the most painful year of my entire life, but I am so grateful.  I am beyond grateful for the 6 beautiful years I had with my son. 

Taking care of him was my greatest privilege and I’m so lucky I was chosen to be his mom. My daughter gave me the precious gift of being a mother, and my son gave me the gift of being a better human being. He taught me more about life and love in 6 short years than I could have learned in a million lifetimes.

I am so blessed.  I am blessed with a family that loves and supports me, and with friends that are like family.  I see so much love and beauty around me----despite all the pain and sadness I feel----there’s so much beauty in this life that I can’t help but be grateful.  I am grateful I can keep trying, no matter how hard it seems.  I am grateful for HOPE and FAITH and LOVE, and for light that shines through on my darkest of days.  I am grateful I’m still here……I’ll keep trying. 

That’s all I can do.

Follow Crissy on her BLOG