The NICU: Riley in Daddy's Arms

Wordless Wednesday

NICU Haunting

John has been rising and leaving home around 5 am each Sunday for the past month.  A local college has scheduled John's IT services every Sunday morning through the end of the year. The reason is to prevent disruption to staff and students.  It's a challenging schedule but he is happy to take work when it is available.


He came home mid-afternoon and was greeted by the usual excitement by the boys who knew their fun was just beginning as they prepared for an afternoon swim and Riley's birthday celebration.  

My boys spend the afternoon together.

Clearly, something was bothering him beyond the early rise and hard work he had just put in.  


"What's going on?" I asked.


"I just spent the day in the NICU." John answered.  "Today I was scheduled in the nursing area of the college and started with the fully functioning teaching NICU."  

Of all places to land on the anniversary of Riley's traumatic birth which began our journey with two months of the NICU.  What an uncanny, cruel circumstance to land him in one of the most distressful places of Riley's young life on the actual birthdate.


How strange life can be.  If you recall, I actually chose to post a picture of Riley in the NICU yesterday having no idea where John actually was at that moment.

Ready for his birthday dinner wearing giraffe print.

If you gotta wear a bib - it should be really cool.
My favorite bibs are birthday gifts sewn by Ms. Jeanine and Ms. Wendi.

We are all special... by Stacie Wiesenbaugh

Carnival Ride - Submission to "Butterfly Dreams" Disability Carnival Ride

My subject haunts me.  I cannot get it out of my head and I cannot resolve it.  Possibly it is the reason I blog. 

Do I blog about special needs, yes.  However, my original motivation to blog was not the special needs by itself and the Carnival Ride it put us on.  My motivation to blog was to communicate beyond my little family that special needs does indeed need support beyond the family.  Why must I communicate this?  I share our experiences because our community abandoned us.  Perhaps, I thought in my naivety, I could now help those just outside some other special needs circle to understand this special needs status a little more thoroughly.  Yes, certainly naive.

Maybe I simply do not understand Community. 

I looked it up:

COMMUNITY    com·mu·ni·ty: noun, often attributive \kə-ˈmyü-nə-tē\

1 : a unified body of individuals: as

a : state, commonwealth

 b : the people with common interests living in a particular area; broadly : the area itself <the problems of a large community>

 c : an interacting population of various kinds of individuals (as species) in a common location

d : a group of people with a common characteristic or interest living together within a larger society <a community of retired persons>

 e : a group linked by a common policy

 f : a body of persons or nations having a common history or common social, economic, and political interests <the international community>

 g : a body of persons of common and especially professional interests scattered through a larger society <the academic community>

2 : society at large

3 a : joint ownership or participation <community of goods>

 b : common character : likeness <community of interests>

 c : social activity : fellowship

d : a social state or condition

Pausing from my task, I discovered this video on my facebook page:

http://www.godvine.com/Baby-Squirrel-Gets-Help-from-an-Unlikely-Place-217.html

Did our community intend to abandon us?  No, likely not.Like the squirrel there is a community just beyond reach... watching.  And eventually one or two of the watchers step up and make a difference.

But the day happened.  One day John and I were a couple with friends, careers, extended family, volunteerism, activities involving many more people beyond the two of us.  The next day my healthy pregnancy ended with Riley suffering an in utero Grade IV brain hemorrhage.  No neighbor was available to help me to the hospital as I knew I was in far too much pain to take myself.  I took a taxi.... one very late, lost and English free taxi. John rushed to meet me while no one he worked with was available to pick up the slack and he continued to field emergency pages throughout our own emergency.

Where was our community?

Here we are perhaps 24 or more hours beyond the emergency c-section holding Riley for the very first time.  It took a nurse 45 minutes to arrange all the tubes and wires to make this happen.  I believe this to have been arount 3 am on Aug. 30, 2002.  Santa Monica Hospital NICU.

Our community was myself, John and now a very ill child.

That was our community and today we are four. 

This is the community you trust and rely on.  This is the community that will be there for each other regardless.  We are not completely isolated, we do stretch a little beyond this especially with our mom's around and it changes shape a little.  This however does not change my feelings of abandonment.

Please forgive me reader if you are disturbed by my perception of community.    My experience has brought me to this conviction.  How do I move beyond this limitation and should I?  Am I now capable of being part of a larger community?  Is not this the reason I post this little niche blog?  I am reaching out to a more extensive community, yet I reserve a complete picture.  It is now clear to me that community is a blog subject that I must pursue and I hope that you will understand that this blog is also about the healing process.  This is my attempt to be community for those other special needs families who need it as well.

I invite you to defend, argue or share your thoughts on community with me.  This is my experience and I cannot present it as more than I believe it to be.

It's A Mad World

We are all special.... by Stacie

Please visit Butterfly Dreams to view more submissions on Community.  I do hope they are far more positive than mine.

Touch of a Child

Touch sooths us.  Touch is a physical display of our love.  Touch is painful.  The human body aches for the touch of another.  The touch of my son brings an array of emotions rushing through my mind.

A NICU parent learns within moments that our gentle touch overwhelms our preemie child.  My first reach toward Riley received quick warning from the nurse guarding Riley, "You must touch him firmly."  This is my baby.  He has been through so much when only hours old I needed to convey my love.  My first gentle touch met with shudders through Riley's 4'8" body.  The NICU parent learns very quickly our touch must be firm from that very first moment.  It is the firm touch that our child needs.

We are all special... by Stacie Wiesenbaugh