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Blog Introduction

This blog is the story of how my husband and I faced the illness and death of two of our children. Each blog post is essentially a chapter in the story, so in order to truly understand it, you are going to benefit by starting at the beginning.
I hope you find our story touching, and in some way find comfort and hope through it as you face your own storms in life.

Monday, February 20, 2012

Silliness and Self-preservation

The days moved on, and we began to have a life that somewhat resembled normalcy. Michael was an energetic two year old who always kept things lively and interesting, while Matthew grew and continued to wrap his sweet ways around our hearts.  The two of them together were an interesting combination;  Michael full of vim and vigor, running everywhere and full of non-stop action, while his brother, weak from the disease that ravaged his body, would sit in an infant seat and watch his brother with eyes fixated on the embodiment of all he would never become.  I would chase Mike round and round the kitchen table in a game of "catch me if you can", while Matthew, seated in his infant seat, would visually trace every move.  I would occasionally make a sudden break from chasing Mike and run up to Matthew as if I was going to "get him".  He would burst out with the greatest little giggles and laughter ever heard.  In spite of his physical limitations, he was content to simply be included in the game. That child had the sweetest spirit residing inside his frail body.  He was just the sweetest.

Michael loved Matthew as fully as any two year old could love a baby brother.  On more than one occasion, when I couldn't find Michael in his usual places of play, I would find him with his brother...in the crib.  Michael would sneak in during Matthew's nap time, crawl up and into the crib, scramble over his brother, and together they would be lying there; Michael pointing up to the animals that hung from the mobile suspended over the crib, or showing his brother a stuffed animal he found to be especially interesting. Matthew just lay there, soaking it all in, mesmerized by this big brother who was undoubtedly telling him the world's greatest secrets. I wasn't happy that Matthew's nap had been interrupted, but I couldn't be upset with the incredible show of brotherly love being displayed.  Michael loved his brother with nothing held back.  He had no idea what Pompe's disease was, or that his brother would soon be gone.  He lived in the moment, free to love without reserve.  I wished I could have experienced that as well, but I knew too much and had to be content with whatever moments of joy I could salvage.  Michael's antics with his brother helped make those moments happen.

We didn't take very many photos of Matthew.  I suppose part of it was because we were busy with the two kids, plus, bonding with Matthew had been an issue from the start. Having permanent reminders of his presence, then his loss, was something I just didn't know if I wanted, or could handle.
There may have been an underlying part of me that wanted no remembrance of the pain we were facing again. Our minds are ingenious when it comes to escape and self-preservation.  They recognize better than we do how much we can handle emotionally at the moment.  We store and lock memories away that are too painful for us to deal with, or would be too traumatic for us to face full force. Those memories and feelings don't go away though.  They are stored up for a time, only to be dealt with at a later date.  I was oblivious to this mechanism of self-protection my own mind was performing for me.   I did not know I was suppressing a lot of my feelings, especially anger.  Only once did I ever allow myself to verbalize any feelings of anger toward God.  One evening when I was home alone with the kids, I was holding Matthew, praying once again for him to be healed, and feeling the guilt of "inadequate" faith.  I began to cry, and in that moment I told God  I thought His plan for my life stunk, and I wanted a different one.  I don't believe I was so much angry, as I was hurt, and I wanted Him to know it.  I thought I was handling our whole situation just as normally as anyone else would; and maybe I was. But my date- my confrontation with all the bottled up emotions and feelings, would catch up to me at a most unexpected time, in an unexpected place, and in an unexpected way.

 The lack of photos is something I regret to this day.


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