Monday, January 9, 2012

Saturday, January 7th, 2012

A note from Mommy:

I know I have blogged about this in the past to some extent but it is still something I am not quite sure how to handle.

On Saturday, Peyton accompanied us on a multitude of errands - pet store, optical shop, Jiffy Lube, grocery store and Home Depot.  While Travis went off to look at non-fun stuff like a blanket for the water heater, Peyton and I headed to the paint area.  Along the way, a Home Depot employee stopped us and asked if he could give Peyton a sucker.  I agreed and Peyton was super happy.  On we went to the paint area and picked out a sparkly pink paint for her bed.  The whole time she kept insisting that we had to hurry and find Travis to show off the sucker she had gotten.  As Travis headed to the check out line with his purchase, the same Home Depot employee found us again.  He asked what was on Peyton's neck (she was wearing her HME) and I responded that it was a tracheostomy.  He then asked if we were familiar with their Saturday morning program for kids.  Apparently they have a different project each week that the kids work on and take home with them and he thought she would love coming.  He then handed me the project from earlier in the day and said, "We normally don't give these out, but she is such a special girl." 

As I thought about the experience later, I went back and forth in my mind about what happened.  Peyton is special for many reasons and not all of them are related to her syndrome and the physical anomolies that go along with it.  But at times, I think that is what she is recognized for.  It is ironic to me that we try to have her live as "normal" a life as possible, but in many respects society seems hell bent on calling attention to all her differences - positively and negatively both.  Earlier the same day we were eating at Village Inn and I noticed lots of stares, mostly from elderly patrons.  When I mentioned it to Travis he said, "Well they probably haven't seen any kids like her before because they probably died at birth" to which I responded "or those kids were institutionalized".  Both are true.

But as I was considering the long term effects of her being singled out so often in public situations, I also considered the fact that people probably notice her for other reasons besides the medical ones - we just don't realize it.  Because one thing about Peyton is that she is a social creature - she loves people and she is not shy.  I am struggling with the best way to describe her to those who may only know her via the blog but the best word is probably "alive".  When Peyton is strolling down the aisles of Home Depot or at the table at Village Inn or anywhere else - you notice her because she is so animated and alive!  She is not the kid hiding behind her parent - she is out in front singing, dancing, skipping, talking and interacting with her with all those who come in contact with her.  So I still think I am doing her a diservice by assuming she is noticed just for her tracheostomy or her hearing aids because in all reality she is probably noticed just as much for her winning personality.  In the end, it is that winning personality that she will need in the tough years to come.  I am so grateful that she is such a charmer, because she is helping to dispel myths people may have about children like her.  She is one of the cutest ambassadors for those encountering a trach for the first time and hopefully making the path way a little easier for those kiddos with trach who are to come behind her.  So whatever the reason the Home Depot employee approached her, I am just so glad he did!

1 comment:

  1. Hi, my name is Monica and our 9yr old daughter Ashlynn was trached at birth. She has severe micrognathia, microstomia, Nissen fundoplication, gtube, glasses (astigmatism corrected in 2004 with surgery only to relapse), hearing aides, 6 mandibular jaw distractions, 2 tmj reconstructions w/Matthews device for tmj ankylosis, and 1 rib graft (ribs to mandible), multiple hospitalizations due to trach infections and respiratory infections (pneumonia and RSV) over the years. She too is LIFE - outgoing, beautiful, persistent, perseveres, happy, always dancing, friendly, caring, a true miracle.
    We just got word from ENT yesterday that we get to start capping trials!!! We are so excited AND nervous, with so many questions. Thank you for sharing your blog -- Peyton is bBEAUTIFUL!