The Malachi Group

It is impossible to try and explain what life is like with our little angel messenger. Impossible. Yet, so many ask, and painfully so many judge without knowing. I am more than willing to share details. Most are not interested in the long of it and there really isn't a short of it. To follow is my best attempt at a concise description of life with Malachi.

Here's the thing; there is the good group of Hirschsprung's patients and the bad group of Hirschsprung's patients. The good group has an operation and goes home never to return with complications of any kind. The bad group has an operation or two, gets sick a few times a year and needs to be hospitalized, and magically everything settles out by 3-5 and, voila, couldn't be better. And then, there's Malachi. They have actually created a group just for him. No joke.

Did you know that Dr. Aiken has consulted with at least 9 other (at last count) Hirschsprung's experts around the country on Malachi's case. Did you know that not a single one of them can explain why his body is doing the things it does?  Did you know that his care is specialized to the point where registered nurses simply ask what supplies we need and then leave us to it, barring an IV mind you. Well, now you do.

The best way I know how to say it is this; he is always maintenance and often times extremely high maintenance. We never know from day to day, even minute to minute if he is going to:

* drink enough formula to stay hydrated and thriving (a good portion of which happens through the night, his colon has always been a night owl and there's no training the thing, we promise we've tried)
* be able to tolerate solid food (hence the bottle still at 2 years old)
* sleep at any semi-predictable time
* start hurling profusely and violently every 5-10 minutes for hours or days
* need an irrigation
* be portable, by this we mean able to go anywhere which is entirely dependent on all of the above and below
* need to go to the hospital
* have enterocolitis which is a nasty bacterial infection of the intestines (colon) that kills people and is caused by the Clostridium difficile (C.diff) bacteria
* and so on and so forth, yada, yada, yada, you get the point

We live life dictated by his colon and that is all we can do. Unless of course we want a sick and hospitalized little boy, then we could do whatever we want and whatever everyone else thinks we should be doing. For now, we choose him and the Lord blesses us to each have what we need because we are willing to make the tough choices.

Did you know that each time he has a good spell and we get ready and excited to resume pre-Malachi activities, he gets really, really sick? It's uncanny and seems impossible. That, my friends, is life with Malachi; impossible. And yet, we do it well enough that he thrives and so do the rest of us. Perhaps it is actually true that nothing is truly impossible, it's just how you choose to look at it. Perhaps.

Here's to hopes, prayers, blessings, crossed fingers, candles lit by my dear devoutly practicing Catholic grandma and grandpa, meditation offered, and everything else that I forgot to mention specifically; here's to all the good that has been and continues to be offered on our behalf. We hope for a blessing of  complete resolution by age 3-5, but we will choose best for him as long as necessary.

And here's to all of you that choose to support rather than judge, it means the world to us!

Questions are always welcome!