Tuesday, March 24, 2009

This post is not about us....

This post is about our friends. And I feel like supporting them is more important than what I had intended to post tonight.

I know a lot of our readers also follow the blog of Riley's former roomie Carter. I check their blog everyday and celebrate their successes and my heart aches for their struggles. We have spent many many hours with these fine people and they became like family to us. We celebrated and worried over each others children as if they were our own.

So it pains me to read her blog post today, and of the struggles they are dealing with. While we also deal with struggles daily with Riley, our day to day routine is no where near as complex as theirs. Riley has lots of meds and reflux and vomiting and that little thing called an ostomy we must care for...but he will eat. These people struggle EVERY DAY to get their child to eat. We've been there and it's helpless and tiring.

However not only are they struggling to get him to eat, it would SEEM that they are struggling with the opinions and attitudes of people around them, and having people be upset with them for not having time to do things. Truly...I wish I could speak to those people in person because WAKE UP AND SMELL THE VOMIT PEOPLE!!!!!!!!!!! Carter may be home, but they are BUSY. Once these babies go home, the "work" and the "struggle" is NOT over. Doctor appointments EVERY week...clinic appointments at Duke which is HOURS away on a regular basis, medications to keep track of, feeds to keep track of, vomit to clean up...the list is never ending. And it is SO sad that in order to express frustration, you feel like you must defend yourself because certainly SOME ONE is going to take you as ungrateful. NO people like them are NOT ungrateful. They are tired, and stressed out and worried about the health and well being of their child, who YES thankfully IS with them when he very well easily could have NOT been, but they are at their wits end just the same. If you haven't been there, you cannot know how upsetting all these things are. And even if you HAVE been there, unless you have experienced the same issues with your own child, you cannot judge. Riley has issues, but they aren't Carter's issues. I can appreciate the stress of weigh-in's and some issues. But not the feeding issues. Our issues with feeding deal with tolerance, not getting him to eat it. So I don't even pretend to understand what they must be going through. I just know from my own experience it gets tough. and it gets overwhelming. and people do not understand why you get nervous when it comes to weight and weight checks, and when you tell them your baby has reflux, you are not talking about just a little milk dribbling out their mouth after eating. These doctor appointments are not like the "well baby" appointments you took YOUR child too. An ounce gained or lost on the scale can make or break your day cause its THAT important for our little ones. And blood work and special tests...this is NOT just a finger prick. The screaming babies do over shots?? These kids BARELY whimper at those because it's NOTHING compared to what they have endured.

I don't know why I felt the need to rant about all that. Probably because I have always been VERY defensive over people I care about most. Probably because when I read their post, it saddened me so much that not only are they struggling with the issues they HAVE to deal with (carter's feeding issues), but their pain is ALSO being increased from people they know. If those people HAPPEN to be some of the ones that check in on Riley from Carter's blog, my only words would be....don't exclude them from invitations, invite them, but if they cannot make it, just accept it. If you are someone who TRULY cares about them, that won't be hard to do.

Brad...Kellie....I just want you guys to know that I am in AWE of all you do in a day to help Carter. Your strength and determination to see him succeed should be applauded. I am so sorry that people around you are causing you additional stress and turmoil and I just want you to know that we support you and are SO proud of all you guys are doing and trying to do, in carter's best interest. You are more than welcome to bring him to our house to vomit any time! We won't even be upset if you arrive late and leave early ;o)

Comments will not be accepted for this post. If you feel the need to comment to me directly, you may do so by email. If you would like to support Brad and Kellie, please comment directly to them, via their blog.

I will share some news about Riley tomorrow. Just say a quick little prayer that his belly will be tolerant for tonight. That is all.


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