as Memorial Day 2015 draws near

Two years ago I blissfully held my month old baby and watched my crazy almost two year old run around enjoying the weather. Little did I know that my life would change dramatically in less than two weeks. My daily worries consisted of “how many outfits should I pack incase Colbey Raye blows out?” Or “can’t my children nap at the same time for once so I can do laundry!” And maybe “okay, watch one more show on the Disney Chanel so I can rest a moment…” Little did I know that in just two weeks those worries wouldn’t even cross my mind again! For a very long time at least. This month of May, as old memories pop up on my time hop app I cannot help but get a sinking sick feeling in my stomach. Why? Because honestly, I will never forget those first weeks in the hospit, I will never forget the way I felt the way I still feel. My hands are shaking as I type, my stomach hurts with sorrow and my head is full of all of the thoughts and feelings I had to go through two years ago. It is similar (in my mind) to how one would feel if they had lost a child and the sadness hidden inside coming out as the day drew near. Colbey Raye is still with me!! And I am so so thankful for that. She is perfect, and loved, and treasured so deeply. But the child I thought I gave birth to two years ago, is not the child I am raising today.
Memorial Day brings on a lot of memories for me. It used to be a weekend spent with family and friends enjoying some relaxation and remembering those who have served us near and far. Barbecuing, sun, family and friends. But 2 years ago that changed for me, and the memories that consume my Memorial Day are both sad and joyful.

Memorial Day 2013 changed my life forever. It still amazes me how one day, one moment, can change a persons life forever. Almost two years ago on May 27th I had to let go of the child I thought I had. I had to let go of the child I wanted, the dreams I had created and the memories I was hoping to make as she grew. I had to let go of my baby and embrace the unknown. At just 6 weeks old I had to let go of the little precious girl I had and embrace a fragile, weak, regressing baby that I feared would not make it through the night. I cried over what I then thought was a loss, and held on so tightly to that baby that I didn’t sleep for over 72 hours. Little did I know that the “loss” I felt at the time was actually a gain! In loosing my “imaginary” child who I had dreamed about I infact gained the greatest blessing I could have ever imagined! I gained Colbey Raye, the real, true, sweet, perfect, social, friendly, stubborn, independent, Colbey Raye! The one God created, the one who has loved and been loved by so many! My dreams couldn’t have created such a perfect girl.   

  

   The memories (I had created for my girls) of a best friend for Austyn Jayne did change that day, 2 years ago when we did not know what to expect from Colbey Raye. And as they create their own memories, their own bond and their own stories together I can see the true love they share for one another! Will they be best friends like I had hoped? Maybe! 

  

  
Once again, my memories of Memorial Day changed dramatically when Colbey Raye underwent her second brain surgery in 2014. A surgery that would impact her life forever in both positive and negative ways. Again we (especially Colbey Raye) would have to undergo loss, again we had to plunge into a world of unknows, again we had to “let go and let God.” And again God showed us how glorious He can be. Her hemispherectomy has left her with no use or function of her right arm, but she is seizure free!! All that the surgery has “taken” from her has been replaced by amazing acomplishments we would not have seen otherwise. It’s hard being the one to “choose” your child’s fate, it is hard to choose the lesser of two evils when it come to your child’s health and wellbeing. But no matter the loss, the gains have been exponential! Two brain surgeries and our Colbey Raye can talk, not well, not in sentences but she can say an array of words! She can get from point A to point B, not by crawling or walking but she can get where she needs to go scooting on her little bottom! She can take a joke, laugh when things are funny, she can tease, sympathies, sotialize, and she can comprehend what we say to her! She can communicate with hand gestures and head nods, pointing a words hear and there. I thought I had dreams for her, but it turns out she has dreams of her own, and nothing makes me happier than seeing her push so hard to achieve them. She is a fighter, and although I struggle when seeing her get left in the dust by other children, or watching her sit at the bottom of the stairs wishing she could run up there and play with her sister, I love how hard she pushes herself to a hive her dreams.

   
   It is hard, it is a challenge daily to accommodate her needs, it is time consuming and tiresome! I am human, I break down, I cry, sometime a feel like giving up! It is true. It is harder than I imagined, but it is more amazing than any dream I could have drempt! I guess through this all, what I am trying to say is that through all the hard time and continued struggle we have been blessed tremendously with the sweet little person that Colbey Raye is. I prayed for this girl more than anything else in my life and she is here! We are just 2 days away from Colbey Rayes one year hemispherectomy anniversary, and what an amazing year it has been! She is learning new things all the time! She puts a smile on my face daily! And she has created so many memories that I will never ever forget! Here is to another Memorial Day full of hard and happy memories, sad and sweet memories, old and new memories.

   
   

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