Hirschsprung's Disease

So.  My son has Hirschsprung's Disease. 

You know, for the past 10 months, I have "known" that he has HD.  It actually hasn't been until very, very recently that it sort of fully occurred to me that he has a "disease". I know.  You're like...DUH! It's in the title! I don't know.  I can't explain it.  I knew it...but, I clearly didn't...."know" it. 

I am asked fairly frequently "How's Titus doing?".  I always sort of hesitate because I'm not entirely sure how to answer that question. 

He's happy!  He's so handsome!  He's snuggly and smiling!

And.....

I think people don't really want to hear about poop. 

I think they ask, and want to hear "He's Great! Thanks for asking!"

Or, they ask....I share a little more than they clearly felt like hearing and they'll say, "Well, but, at least his surgery went well.  So everything else will work itself out."

I don't ever really know how to respond to that statement, because, I think up until really just quite recently that was sort of how I was feeling, or hoping.  I think I was looking at HD as a physical anomaly - that he was born with a physical impairment and the surgery fixed "that" and now it will just take time and everything else will "heal" or "learn" or....something I've never really been able to put my finger on. 

Hirschsprung's, I've learned....(oh....did you notice....I took the "disease" part off of it again.  huh.)...anyways.  I've learned that HD has a lot to do with mother's intuition.  At least so far.  A whole lot of what is going on with Titus is kind of hard to explain.  It sounds gross more than really concerning.  He has been very close to very sick so many times I've lost count.  It happens so fast.  He seems fine in the morning and by later that day....something is wrong.  He's distended.  He's clammy.  He's feverish.  He's fussy.  He's refusing to eat.  He's visibly uncomfortable.  That's combined with us never really knowing what to do...do we irrigate right now?  Do we wait it out and see if his body can get some poop out?  How much poop is enough?  Oops!  Now it's swung in the opposite direction and he can't keep any poop in and he's had so much poop leakage that his bottom is so sore and raw and rashy that now I'm afraid he'll get another kind of infection.  Is the fact that he doesn't want to eat and struggles to swallow things related to HD or is it totally something unrelated?  Additionally, the one food he wants to eat - yogurt - isn't great on digestion! BUT, he's not gaining weight fast enough (HD related) and so we are desperate to get him to gain weight and will just let him eat all the yogurt he wants if it will at least make him gain weight and get bigger and stronger.  Ugh. 

I feel insane. 

Anyways.  It has just recently really hit me that this is a DISEASE.  It isn't going away.  It is a lifelong condition.  His diet needs to be drastically high fiber (which he won't touch with a ten foot pole!).  He will ALWAYS have bowel issues.  Potty training and obviously particularily poopy training is going to be HORRIBLE.  (And the fact that I am dealing with the joys of potty/poopy training right now with Susanna and KNOWING that Titus' will be SO. MUCH. WORSE. and WON'T be any fault of his own has me absolutely overwhelmed right now).  AND...that there is a distinct possibility that he could still need to have a pull-up and/or accidents quite long on into school years has me just heartbroken and embarrassed for him and defensive already for dealing with people who don't understand that this is a DISEASE and not a matter of his will or a power struggle or a need for "tough love" or us being lax or....whatever.

This is not something he can "learn" away. 

This is not something that he can "grow" away.

YES!  He is so much better than he was when he was a newborn!  YES!  He hasn't been hospitalized since his surgery!  YES! He is finally making some gross motor gains - sitting up on his own, commando crawling! 

But.  (sigh)

He tends to swing back and forth from 2-3 days of not pooping and getting significantly distended and visibly uncomfortable - so we irrigate if he doesn't poop - then he swings to 3-4 days of continual poop - basically the inability to keep anything in.  That's where he is today...and for the past several days. His little bottom is so raw it breaks my heart.  I can't imagine how that must feel for a wee little person who can't stand up to get the weight and pressure off of his sore bottom.  (I have him stand on my legs while I hold his hands for as long as he wants everyday)

(This is so rambly.  You must want to shoot yourself in the head by now!....welcome to my poor husband's world! :)

Tonight, for some reason, I typed in Hirschsprung's Disease on Facebook and up popped 3 different groups/communities.  I literally stood here in my kitchen and started to cry! (OK....I need you to know that the word "popped" up there one sentence ago was originally typed "pooped".  I can't get away from it!  My world revolves around poop and my fingers just auto type it!)

I'M NOT ALONE!! 

I'M NOT CRAZY!

I'M NOT HOVERING!

I'M NOT INVENTING PROBLEMS!

I cannot even express the sense of relief I felt just reading other people talking about the same things that we are going through and questioning about Titus.  Just a HUGE sigh.

And then...I started looking online at other sites and now I'm a little overwhelmed.  Sometimes you can have too much of a good thing.  Reading everyone else's questions and situations and stories was a little more than I could handle.  It made the DISEASE portion so real and so...forever. Silent little whispery questions in the back of my mind were there...typed OUT LOUD by some other mother somewhere else in the world. 

So.  That's how Titus is doing.  That's how we're doing.  I'm sure that tomorrow I'll wonder WHAT IN THE WORLD was I doing by typing all that out and posting it in my blog.  But....this blog....originally...was to be a chronical or a written testimony to my life with my children so that I wouldn't forget the events, the feelings, the daily events - good, bad, ugly and beautiful - in the midst of the "chicken with my head cut off" that is my life with my blessings.

I don't know how to end this.....I guess that's fine.  Because I am coming to understand that there isn't an "end" to this story...it's just Titus' story and our life and Praise God, it goes on!