Battles against terminal illness, anxiety, and life!

Dear Braden,

Huuhhhh….whoooo….huh..whooo…the iregular pattern of your breathing is keeping me awake.  Sometimes it’s slow, then you breathe rapidly, and then you cough.  Oh,  how I worry.  I’ve been watching you for the past few days like a protective mother bear.  I’ve cradled you in my arms as your body limped and your fever spiked.  I soaked you in cool water as you screamed in such a way that it was nearly unbearable.  You’ve whimpered, you’ve cried, and you’ve thrown yourself down on the floor in protest.  The flu is getting the best of you, but you are refusing to give in. 

With every dose of Motrin or Tylenol, your fever comes down and you feel as if you can conquer the world.  “Watch my dance moves!” you shout.  You clear your throat, go “Me, me, me, meee!” and start to sing and dance around the living room.  This adorable two-minute burst of energy you display exhausts you.  You have cabin fever my little man.  You drove the lawn mower for twenty minutes today sitting on your dad’s lap and turning the wheel, and you came inside and fell asleep.  Today you tried to fight back and show the flu what kind of tough stuff you are made of.  I’m so proud of your determined spirit!

As your mother, I can only sit here and worry.  I have listened to your cough increase this evening.  I’ve heard your more labored breathing.  You have woken up every thirty minutes for the past few hours, and I have yet to figure out why.  I attempt to ask you why each time you wake, but you look at me like I’m speaking Greek.  A minute later you are back to breathing heavily.  I worry about pneumonia, your lungs, and what all of this means.  Something?  Nothing?  Parenting you is an amazing gift.  Loving you is beautifully painful.  Managing your health is scary as hell, takes extreme patience, and requires me to put up walls around my heart so that I don’t break into a heaping mess on some poor unsuspecting doctor.  How about you just not get sick again for a while?  This mom could use some sleep and peace of mind for at least a few weeks, ok?

So, in a few moments I’m going to turn off the light, close my eyes, and chase some elusive sleep.  My mind will race through my to-do list.  Then it will attempt to go to that forbidden place in my mind, and I will reel it back in for I just washed my pillow cases.  I do not need to stain them with tears.  I will toss and turn, count backwards, and finally imagine us all playing on the beach.  Then, just as I’m nearly asleep, you will cough and I will bolt up.  Sleeping with you, my sick baby, is not for those who wish to sleep peacefully. I will do my best to love and nurse you back to health, so we may all show off our fancy dance moves.  I love you sweet boy, and you will never fight alone.


Your Mom

On a different note, we lost another A-T angel today.  My thoughts are with their family.  That’s all I have.  I have nothing more in me to say.  I’m afraid there are no right words to say to a mother who just buried her child.  I wish that something I had to say would be comforting, but the only thing to help would be to bring her back.  If I could manage that, I would.  Alas, we are all standing behind her family in solidarity.  We fight for a common cause, our children.  We chase hope and a cure, so that we too won’t have to face their reality.  Please hug those you love extra tight tonight.



Comments on: "Dear Braden," (1)

  1. The loss of a child must be more devastating that words can describe. Losing one that has the same condition your child has…has to be a knife to the heart.

    If you are like me, even if someone offered to stay with Braden while he slept, you would still not sleep well, and hear every sound. When the boys were sick I used to be upset with the hubby that he could sleep through ALL of it. Then it dawned on me that I wouldn’t sleep well anyway. Ahhh the world and heart of a mom.

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