I was standing at the bus stop discussing the latest Walgreen’s deals with our next door neighbor and I told her that there was a huge Huggies deal and I was SO excited because I was able to stock about 25 packs (enough for roughly 6 mo of Kyleighness) for less than $150!  Now, this was not actually my neighbor but the person who babysits her kids and we talk on occasion.  She said to me, with a little bit of snittyness I might add, “Are pull-ups included because he doesn’t wear diapers anymore”.  I am sure she was just proud that he had potty trained but I know there was an undertone of “What’s wrong with Ky that you aren’t trying to potty train her?”

Our neighbor’s child is a full year younger than Ky.  He is still very baby like in his actions and speech.  He is cute as a button but still very much a baby.  When I look at Ky now… she is not.  She will be FOUR this coming year.  She speaks in sentences and ponders life.  She orders her brothers around and demands explanations.  She can be reasoned with although at times she is, like every 3.5 year old, unreasonable.  She is smarter than most, I would venture to guess.  I choose to see my daughter, not as the child who cannot be continent, cannot hold her own stool, has the inability to keep herself hydrated, or consume enough calories to live.  I see her as this amazing miracle.  This beautiful person who we have fought so hard for.  I rarely think about things that WERE without also seeing how wonderful and miraculous those times were.  So even in looking at the “horror” of her life I see beauty, wisdom, grace and miraculous things.

But that single comment and the tone with which it was said was like a dagger.  It hit me without me even seeing it coming.  I had no idea what to do with it once I did see it.  It wounded me.  I realized… that day was one day closer.  To Kyleigh realizing…. that she is not normal.  What will I do when that day comes?  How do I explain to her the reasons why she cannot wear those big girl Ariel panties that she loves so much.  Instantly this glass house that I have created around her illness, that it is positive and good things have come from it and we have been shown miracles and and and…….. it all came crashing down.  How can I ever explain this to her and make it positive?  I can’t.  There is nothing positive about it.  There is no hope for a cure, no meds to coincide, no treatment plan that we haven’t already tried, no surgery that will help, no doctors to consult… I have nothing to give her.  I have nowhere to go and no one to seek help from.  That hurts.  A lot.

Just today, Ky had her morning poop.  Yes… she usually has one a day, unless her meds are off or she is sick… in the late morning.  (these are all things that are very commonplace to talk about in a family with an IA kid… I apologize if they are TMI for you…)  I went to reach for the wipes on the changing table and of course… nada… I go to the armoire… none there either.  I try and send Ross for a new box… hah!  Yeah right.  I really miss my Owen to grab things for me in a pinch situation.  So I left her laying there, half covered in poo (you IA moms KNOW what I am saying here!) and went running to the stockpile room to retrieve new wipes.  I came back and Kyleigh was sitting in the crab position on all fours trying not to put her bum down and get the changing table cover messy yet she was covered… she had poo from end to end and in the course of her panic had peed all over everything.  I could see it in her face… the look of panic.  She had NO idea what had just happened that she peed on herself and her own changing pad.  She was upset and in a way scared because she did not understand it all.  I was upset because I have no conception of how to try and explain.  We both cried.

As I put her in the bathtub I kept thinking… its becoming so painfully apparent now that she is not normal.  Soon she is going to know too and all of the “shadow of doubt” or hope or whatever you want to call it will be shattered.  Right now, Kyleigh believes that she is perfect… and to me she is, but how do you explain to her that she is not perfect in the “eyes” of the rest of the world… and that this problem, this issue, is somehow abnormal.  I worry about people and their painful glances as they realize that an almost 4 year old still wears diapers.  I think about words that are unintentional and just as painful nonetheless.  I am NOT prepared.  I am not prepared to hold my daughter at night when she cries because she wants to be like the other little girls at school.  I am not prepared to watch her run from the school and tell me about kids who said hurtful things.  I am not prepared to try and explain to people in the outside world what is “Wrong” with Kyleigh without also horrifying them.  (because up until now our world has consisted of 90% medical people and they all at least understand the physiology of it all)  I am not ready to accept that this is how it has to be for her.  The surgeries, the hospitals, the years, the meds, the long hours, the monitors, the pumps, the research, the tests, the doctors, the appointments, the traveling… I can do that.  Those things are things I know.  Those things I am ready for.  Another doctor, another hospital, another diagnosis… I can handle that.  This… I cannot.

To be honest with you, there is nothing in the world that has ever SCARED me about this child and I have finally found the one thing.  I find myself aching and paralyzed with fear at this moment that we are one day closer to THAT DAY when she realizes that she is not like everyone else.

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