Germs, BE GONE!!

Today's events were rough enough that I returned to blogging.  I think it was really the compilation of this week's events just building up to the point that I reached my threshold of calm and collected, but whatever.  I did not realize it had been so incredibly long that I have been away and my return is overdue.  Had it not been my meltdown, I am sure something would have driven me to become reacquainted with my blog.  Having said all of that...hello again!!  Truth is, I have missed blogging and my absence has been a sad testament to my son's journey with Citrullinemia.  He deserves for the world to know what he lives with each and every day.  Some days are way easier than others, but each day presents some battle, big or small, from which he emerges victorious!  Today...well let's just jump right in!

Caroline has been sick since Friday, missing school Monday, Tuesday and Wednesday so far.  Coughing non-stop, fever, congestion, ear infection to boot!  It has not been a great week for her, and while I hate for her to be miserable and sick, the truth is...I am relieved when it is her and not Coulby.  I know how that must sound, but when Coulby gets sick it is a constant worry about whether he will make it through the entire illness at home or will end up bed ridden with an IV at Johns Hopkins.  Of my two children, Coulby is usually the one who gets sick more often, and with him having just gotten over having croup, I was relieved that it was not him who was sick again.  My relief was fleeting.

The school called me yesterday to tell me "Coulby is not quite acting himself" and to inform me that after drinking his medicated formula, he threw up.  Nothing major, just some clear fluid.  Oh, and his balance was off.  AND he chose to lay in the nurse's office rather than rejoin his classmates in indoor recess.  That's not my kid.  He LOVES indoor recess.  In fact, that is one of my tried and true bargaining tools in the mornings to get Coulby to eat breakfast and take his medication willingly.  You see, indoor recess means he can bring a toy from home to play with at school.  Yesterday he had painstakingly chosen a Hot Wheels car to bring to school and triple checked to make sure I had in fact remembered to put it in his backpack.  So yeah...I knew he must really not be feeling well to pass up his chance to play with it.  I picked Coulby up from school and let the worrying begin!  His symptoms matched Caroline's, but the day and evening went fairly smoothly.

Today Coulby did not have an appetite.  He would not drink anything other than water, which hydrates him but does not provide him with the calories his body so desperately needs when he is sick.  He has been gagging on his formula (although I did not really think much of that because he does that when sick or well).  It was this evening that threw me for a loop and pushed me over the edge.  Having a sick child is stressful.  Having two sick children is even more stressful.  But having two sick children, one of which poses a constant worry when sick...now that is the epitome of stress!  Take that existing stress after a long day, add Coulby vomiting, and my nerves were shot.  It was out of nowhere.  He's sitting on the couch one second, I bring him his formula, and the next second he is throwing up.  It was like just seeing his formula made him sick.  And he was shivering.  Fully clothed, wrapped in blankets and teeth-chattering shivering!  No fever.  And still had to drink a full cup of medicated formula.

This is where I had my meltdown.  I knew he still had to get his medication.  He had just thrown up and yet I still had to be the bad guy and force him to drink!  Who wants to drink something, especially something that tastes 1,000 times worse than biting down on a stink bug (not that I know from experience with a stink bug, but just imagining it makes me gag)?  Poor Coulby.  I hate Citrullinemia always, but especially on days like this!  I hate that he can't just be sick and lay around in his pajamas and not worry about eating or drinking if he doesn't feel like doing either.  I hate that I have to force drinks and medication and food on him when his belly can't handle it!  It just plain sucks!!!  And wouldn't you know that Coulby, after an hour or so and a lot of motivational talking from me plus a few chants of, "You can do this Coulby!" from himself, drank his formula like a champ...AND THREW UP!  IT JUST.ISN'T.FAIR!!!!!!!!  My poor sweet boy!  He tried so hard to motivate himself to drink his formula, despite feeling sick to his stomach, because he knew he had to.  And after all of that, he looked at me and said, "I'm sorry I threw up, mommy."  I hugged him close and told him it was okay and that he had done a great job.  I told him how much I love him and how sorry I am that he's not feeling well.  And I held back my own tears of sadness for him and anger that he has to suffer every time he's not feeling well. 

And I do feel angry.  I cannot help it.  I know things could be worse.  I know Coulby is still home despite being sick and I should be thankful that he is not at Hopkins right now.  But when I think of how hard he tries each and every day, and especially when he's sick, to take the medication he so detests...I get mad!  I just don't know what to do.  He is sick.  He doesn't feel well.  He needs his medication.  But the medication makes him sick.  If he throws up or if he doesn't get his medication, he might end up in the hospital.  It is a vicious cycle in which I am helpless!

So please excuse my temporary meltdown.  I guess I needed to vent a little to a world where most people don't quite understand what it's like to live with Citrullinemia, or any other metabolic disorder.  Please keep Coulby in your thoughts and prayers.  Pray that he will manage this illness from the comforts of home, away from inner city Baltimore and doctors and nurses and the painful invasion of an IV.  Updates to come!         

What I've Learned

People are funny. I include myself in this rather bland statement. Not "ha ha" funny. More like funny because their human nature makes them unpredictable. That kind of peculiar funny. Do you follow me, or am I making absolutely no sense? Maybe further explanation is required...

My mind was wandering the other day, as it often does, and I got to thinking about all of the people I have met or crossed paths with at different points in my life. Some I have formed close friendships with and we will forever be connected. Some became mere acquaintances. And then there are those with whom I have lost touch, re-connected, and either lost touch with again or formed steadfast connections. Funny how that works sometimes. Which brings me back to the initial "people are funny" statement. You think you know who will be the one person standing next to you through anything, and I mean ANYTHING in life: highs and lows, celebrating and grieving, moments of glory and shame, times of clarity and uncertainty. The one who will accept you for just what you are, no matter what. The one you could call in the middle of the night and know he/she will answer without irritability. That person who will take your hand when no one else will. But you never really know until your friends, family, acquaintances, co-workers, neighbors...you get the point...are put to the test. Because people are funny like that. And they will surprise you.

I speak about people in general, but more specifically, about people in my life in relation to being a parent of a child with a UCD. This encompasses those I knew before, and met as a result of, Coulby's birth and diagnosis of Citrullinemia. I can tell you that in the days of hell following Coulby's initial hospitalization at Johns Hopkins, I was surprised over and over again. Surprised by the outpouring of support; phone calls, cards, visitors, meals. Just the genuine care and concern that people had. But mostly surprised by who reached out. There were those that I knew, and always had known, would be there during tough times. But it was the people whom I would have never expected to be there that blew me away.

Human nature is to set ourselves up for disappointment. To put expectations on ourselves or someone else that are unrealistic or unattainable. In doing so, I was disappointed by several people in my life who were not there during such a scary, traumatic, stressful and helpless point in my life. But it is also human nature to judge, unfairly or otherwise. Judging sets us up for disappointment as well, but in ourselves and not others. This brings back memories of a woman I used to work with. She was gruff and seasoned in her job, which made her a bit of a know-it-all. Well, in my opinion she was a know-it-all, which is a judgment in and of itself. I was young and she always made sure I knew that she was far older and therefore wiser than myself. It was annoying. At that time in my life, I was almost always the youngest in the office, and I heard about it: "When I was your age (fill in the blank)," "I'm old enough to be your mother," "That was long before your time, I'm sure." Anyway, this woman was not my favorite person. But do you know who was one of the first people to call when Coulby was hospitalized? Yup...that annoying, know-it-all co-worker of mine! I NEVER would have expected her to call. I mean NEVER. It was shocking. And humbling. So much so that I remember it to this day. I will remember it always.

In this world of technology, places like Facebook can link us to all of the people we have ever met, or even come into contact with, in our lives. I have met some phenomenal people online. Other UCD families who share a story similar to my own and know exactly what it means to have those people you know you can count on. When these disorders threaten our children and life gets scary and crazy and often seems unfair, they are the ones who help us through it. I suppose that really goes for every facet of life, but especially a UCD life.

My hope for my children is that they have an abundance of people, in addition to myself, who will stand beside them through anything. I hope they form those steadfast friendships young and grow to appreciate the value of such. I hope that they, too, can be that to others. When I look beside me, I know who I will see. Do you? The people you expect to be there might disappoint you. Don't discredit the know-it-all co-worker. Expect the unexpected, because people are funny...