Our Brave Little Soul

It's almost like an out-of-body experience...
To watch your child go through enormous amounts of suffering, day after day.  Knowing our boys have a medical condition that will shorten their life is surreal in it's own way - but to see them become so fragile and teeter between bad & really bad....  It's like stepping out of our body.

I know very well that we could lose Aidan & Ty at any moment, and watching Aidan struggle for so long now, it doesn't seem real.  For the longest time the boys' health was good, stable.  We still hold onto hope for Aidan to go back to his smiley self, we hope for relief and comfort.  All the while, we are scared by some of the things we see - and it's those moments where we step out of ourselves.

We have to be there for Aidan.  Let him know that we are doing all we can - to love him, to care for him...  We can't be bogged down by fear or sadness or uncertainty.  But those feelings are there.

Aidan has had a very rough couple of days.  There has been many moments where we thought 'This is it... This has to be it...'  But we don't want it to be (the selfish part of us). Jason and I have thought long and hard about what we can do to provide Aidan comfort.  It's very scary for us to have to turn to certain comfort meds, because we know what it implies... The selfish part of us wants him here with us forever.

I can't imagine my life without Aidan.  Can't imagine my life without any of my boys.  But Jason and I both don't like to see Aidan like this.  The suffering just isn't fair.  I'm starting to forget how he was, and that makes me so, so sad.  I always want to remember my Aidan as the smiley, happy little man he has been for his whole 3.5 years!  My greatest hope is to see 3+ more years of his make-your-heart-melt smiles!

We know that in Heaven he will run, play, talk, walk... But he'll do all those things without us & that breaks our hearts. Hurts my heart to know he will be without his Mama.  What do children in Heaven do without their Mommy's and Daddy's? Yet seeing him so fragile hurts us immensely, too.  We are torn to say the least - but above all we just want Aidan pain free & happy again.  Above all, we'd rather Aidan be free in Heaven then hurting here on Earth.  Still, a very hard concept for a parent to wrap their head around (aka the out of body experience).

Jason and I ask ourselves all the time, Why does Aidan have to go through so much suffering?  He never did a single thing to deserve this?!  Why must he go through this?  We ask, and we don't get answers back...

But, I did have a blog reader send me the following message (thanks Jen).  In some ways it helps - to know that some wonderful things come out of our little Aidan's battles...

The Brave Little Soul

By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" 

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." 

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" 

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love.

 Priorities became properly aligned. 

People gave from their hearts. 

Those that were always too busy found time. 

Many began new spiritual journeys, some regained lost faith - many came back to God. 

Parents hugged their children tighter. 

Friends and family grew closer.

 Old friends got together and new friendships were made. 

Distant family reunited, and every family spent more time together. 

Everyone prayed. 

Peace and love reigned. 

Lives changed forever.

 It was good. 

The world was a better place. 

The miracle had happened. 

God was pleased.

Aidan unlocks the love in people's hearts.  He gets his strength from God - and it's no wonder he is so very strong.  I've always said he is the strongest little guy I know.

Aidan is creating many miracles and is changing many lives. We have to keep that in mind.  His purpose here on Earth is so very important.

I'm so unbelievably proud of him.  

And so incredibly blessed to be his Mama.  I love you my sweet Aidan.

Some of my favorite mobile pics I snagged from my phone...