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.

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