The Fear that Never Goes Away

Fear is a feeling that I knew but had never experienced in such big doses until King Diaper.  And once you become up close and personal with this emotion on a daily basis, it seems to have a hold on me in a way that I just can't shake.  Its real and is connected to something very tangible.  Our son.

During our time in the NICU, I cannot tell you how many times he was bagged due to breathing difficulties.  I have seen him turn shades of grey and blue that make my stomach turn.  I've watched nurses and doctors work on him for such a long period that the nurses came back multiple times to give me updates while his little life hung in the balance.

He was the child with one nurse caring for him 24 hours a day while cranked up on the vent and nitric. And yet, now he is at home in our care.  For those 6 months, the doctors and nurses were our life line to our child.  Every nurse that he had has a story and something real attached.  I could probably tell you something about every nurse that helped save his life and bring him home.  I will forever be grateful.  Even on long frustrating days when I just didn't think I could do it any more, I am still grateful for all that this incredible team of people did.

So, why the fear?  Well for starters, a cold isn't just a common cold in our house.  King Diaper breathes and rattles in ways that would scare most parents at times.  It scares me.  He coughs to the point of gagging and veins popping out of the sides of his neck as he strains.

And in the back of my mind, I can still see that sick little child in his plastic box being bagged by nurses as the alarms went off.

Life if a regimented thing for us.  There are medicines, and breathing treatments.  So days it a cage match to get the mask on his face.  He rubs his medicine laced yogurt or applesauce in his hair and screams.  And, there are uneventful days.

Since Labor Day, we've been battling a cold that isn't getting better.  And now, we are onto yet another specialist - a Pediatric Pulmonologist.  How is that for a mouthful?

I try not to live life in fear.  I do enjoy those uneventful days where life is normal and happy and there is little coughing and need for decongestant.  But, that two year old boy is still sleeping with an Angel Care monitor during every nap and at night time.  When he finally moves to a big boy bed, I don't know if I can let go of that thing.

For the first 3 months that we were home, the three of us slept in the guest room with a crib next to us.  Every time his monitor would go off, I would jump out of bed waking up next to his bed wondering how I could get up that quickly.

Every night as I tip toe to bed, I go in a feel his back just to be sure that he is breathing.  Sometimes, I go back in the night.

I suppose every parent has fears and worries.  Maybe if I asked other parents, it might lessen my worries or make mine seem more normal.  I'm not sure.

And while the list of doctors is long and the visits are often, I'm thankful.  They continue to be my safety net that helps me to navigate through a frightening parenthood.  I hope that one day these fears will turn loose.  As he grows older, it may make me hold on too tight to a little boy that needs to be normal - running around, getting dirty, playing with bugs and chasing kids on the playground.  I can't protect him from everything.  But, I can certainly try.