Food for thought...

I love words. Mixing and matching words. Creating sentences. Organizing thoughts in writing. But what I love most is when words come together in just the right way to make a statement that leaves an impression. A quote. I LOVE great quotes. And when I came across this one, I felt like sharing. I find comfort in these words. Hope you will too!

"When we long for life without difficulties, remind us that oaks grow strong in contrary winds and diamonds are made under pressure."
~Peter Marshall

Where did the school year go? And how is it June already?

So Coulby is no longer a Kindergartner and will enter the world of a big first grader at the start of the next school year. Whew! First grade? And 6-years-old? I cannot believe that time has

gone by so quickly. Coulby woke up from sleep last night and came to lay beside me in bed. He slid into bed next to me and I swear when he stretched out alongside me he was as tall as me already. Guess that is really not too hard to fathom considering I am only 5'4". Or I thought I was until I was at the doctor's office the other day and the nurse declared me 5'3". Either I am shrinking or I have never, ever been 5'4" and have been under the misconceived notion that I was an inch closer to the sky than I really am. Whatever. So anyway, Coulby is tall and growing up and is not my little Kindergartner anymore. I say goodbye to yet another school year and wonder how I got left in the dust.

And now it is time to kick off summer break. It is a little different a kick off this year with me working full-time again and with...hmm...the upheaval of life. In so many ways. And speaking of working full-time again, this working mom thing takes a lot of getting used to. I still think being a stay-at-home mom is one of the toughest jobs in the world, but being a working mom is kinda hard too. Kinda really is not the word. It is damn hard! Difficult in different ways than staying at home with your kids is difficult. I am getting into a groove though, and really, I am finding that I am actually getting more done now than I did as a stay-at-home mom. How is that possible? I guess because I know I only have two days a week to get things done, along with a handful of hours each evening after work. I have to get it all done in that little bit of time, so even when I am dead tired, I push myself just a little bit more to do it. And I am exhausted. But I am also okay with that. Caroline is liking school. Coulby is looking forward to going to mommy's school this summer. And I am liking the paycheck. So it is a good change for all of us. Just a little different, that's all.

Coulby finished up the school year having had a pretty good go of things both academically and with his health. I mean, he did get sick a lot, and many of those times were back to back illnesses that almost drove us to our breaking points, but overall he was healthy. The fact that he did not end up hospitalized as a result of every illness is huge. Yeah, the February hospitalization was tough, but Coulby got through it and was not in and out of Hopkins as a result of every cold and cough that he encountered. I hope that his experience in first grade will be the same. He does have a scheduled Hopkins appointment on Tuesday, so he starts summer break off like that, which will hopefully yield good numbers. (*Fingers crossed*)

I am not sure what this summer will bring, but I hope for good things. Like swimming and ice cream and bumming it at the beach and cookouts and cold drinks (preferably of the adult kind, but whatever). This summer will be different, but I do know that "different" is not always bad. I hope that the kids, and myself for that matter, will find "different" to have positive implications.

My life turned upside down...sideways...inside out

April 29, 2010: If I allow myself, I will live the moment all over again. A moment in time when such a simple thing as a phone call sent me hurdling into a world I never knew existed within the world. A world in which an enzyme slacking on its job can upset a seemingly simple internal human cycle. A UCD world. Six years ago today I crossed the threshold, only looking back to grieve the loss of the world I knew. Being honest with myself, I still do sometimes. Think about what could have been. And then I look at Coulby. Having been diagnosed with Citrullinemia at 4 days fresh, he has never known any other existence. And he smiles. Laughs. Plays. Pretends. He is happy. Content with the life he has been given. Citrullinemia and all.

*May 5, 2010: I started this blog on the 6 year anniversary of Coulby's diagnosis and could not finish it. Not because my emotions overcame me. Not because I found it difficult to talk about how my life was turned inside out by Citrullinemia. But because it is truly a task to convey what it feels like to go from having a seemingly "normal" newborn to one who is diagnosed with a potentially fatal disorder. Those who have never experienced this just have no idea how it feels, to no fault of their own. My hope was to recap that day in such a way that everyone, UCD families or not, could experience what I felt. And I just do not know if I can do that. Taking a break from the post does not seem to have sparked any creativity.

I remember a lot about April 29, 2004, but I can honestly say that certain details are blurred. I am not sure if that is my way of protecting myself from feeling the despair all over again, but my brain was overloaded that day with words not even remotely close to those existing in my vocabulary. Coulby was so tiny and perfect. So innocent. And he was a pincushion. 4-days-old with an IV in his tiny veins. I did not know if he would make it through the night. I did not know if he had any chance at a normal future. I did not know if he had suffered any brain damage. Everything that I ever thought I knew or had any control over ceased to exist that day. And it has never, ever been the same since.

Coulby has grown into the most amazing little man. He has fought his battles and overcome all of them with grace and a smile. He goes to public school (something I was not sure he would ever do), he has gotten through illnesses at home, he can eat anything as long as it is in moderation, he laughs, he plays, he talks (a lot...and loudly), he walks, he writes his own name, he spells small words, he comprehends...all things that a 6-year-old little boy should do. He has come a long way from the screaming 4-day-old baby hooked up to an IV and wires. And I have come a long way from the new mom whose world seemed to rip apart at the seams in an instant. While this is not necessarily the life I would have chosen for my baby boy, it is the life he has been given; I have been given. And I draw from his strength to keep me going during the best of times, and during the worst of times. Coulby is my hero. My little miracle. My inspiration.

Perspective...

"There's no such thing as simple. Simple is hard."
~Martin Scorsese


And what a tough pill to swallow in a world where the main objective is to make everything more simple. Simple ready-in-minutes meals for the active family. Super absorbent paper towels for quick and simple clean up. Online banking for fast, simple bill paying. Simply put, we go to so much trouble to make things simple for ourselves that we forget what it takes to put the work in for the ultimate outcome. I am not immune to wanting my life to be simple. It just isn't. When Coulby was born, simple redefined itself in my world. My life pre-Coulby now seems simple. My life when Coulby is healthy and metabolically stable seems simple. But in the times when every day is a struggle to keep up with what he needs to thrive, I realize how not-so-simple life truly is. And how not-so-simple his every day is, living with Citrullinemia. The last week has been one of those reminders that always snaps me back into reality. HARD! You would think that after (just days shy of) 6 years of living this UCD life that I would not get such whiplash every time we hit the metabolic wall. But it happens every time. Every. Single. Time.

Okay, so usually I allow myself to ignorantly believe that once we get through March, all of the nasty germs that kids spread back and forth to each other will kind of dissipate. And I know that must sound ridiculous to most, but it is my attempt to will away any illness from touching Coulby after the long Winter of colds, stomach viruses, flu, fevers...you get the point. You can imagine my disappointment when Coulby was sick, yet again and in April no less, with a stomach virus not so long after the last round that he so graciously shared with all of us. The stomach virus that landed him in the hospital for a 4-day stay from hell. *Shudder* I do not even like to think about it. Brings me back to a very bad place, mostly for Coulby, but also for myself. So anyway, Coulby was sick yet again.

He started not feeling well about a week and several days ago. Just not eating. Saying his stomach hurt. No details, but going to the bathroom a lot. Throwing up if we tried to push food on him to meet his daily protein and calorie requirements. The poor kid was just sick and there we were trying to force food and drinks on him from sun up to sun down. It does not make me feel good to say that. For all of Coulby's life I have mourned not being able to take care of him while he is sick the way a mom should. The way my mom always took care of me when I was not feeling well. Coulby might as well have me saying that 'sick' is a non-existent word in his vocabulary. That he might as well scratch it out because he cannot be sick. Not like other kids.

The not eating or wanting to drink anything other than water went on for about a week. Literally, we were just waiting for the moment when we would have to bring Coulby to Hopkins. I always wonder how long he can possibly go without meeting his metabolic requirements before he gets into trouble and needs medical attention to pull him out of it. It is scary. And I really believe it is that fear that makes going through each and every illness so stressful. It is that fear that people do not understand. And the struggle that no one can understand is having a sick kid and still having to get him to eat. What do you feed a kid with a stomach virus? A picky eater, no less. Do you want to eat anything when your stomach hurts? Now you see why I say that when Coulby is sick, life is not simple. Not at all. For the most part, our daily routine in caring for him has become second-nature. But we are reminded of the smallest things that we do every day to keep him alive and well when he is sick. Because that balance gets so thrown off and we so desperately try to gain it back.

Coulby finally met all of his protein requirements today for the first time in well over a week!! This is blog-worthy. And if you are a parent of a child with a UCD, you know why. Because it is that opportunity to kind of breathe again. To live again. Coulby is finally asking for food. And drinking milk. And tormenting his sister with a vengeance (ah, sibling rivalry). Coulby is back! Oh how sweet it is!

And now I can resume life under the illusion of simplicity. Go through the motions and slip into our "normal" routine again. Into the daily rituals that usually seem so simple, but become so hard when we are thrown a metabolic curve ball.

Here we go again...

My camera usually tags along wherever I go, and out of the hundreds of shots that I take, I usually only end up with a handful (if that) of photos worth sharing. Coulby is not the most cooperative subject, so I have to be quick with the camera if I want a decent photo of him. I have found that calling his name and snapping off a shot when he turns to respond is my best plan of attack. Hence the photo accompanying this post. This photo of my sick boy. Yeah, I said sick boy. As in he does not want to eat anything and throws up every time we try to push something on him. So what do we feed a kid who does not want to eat but HAS to get so much protein and so many calories and so many ounces of fluid in every day?


Honestly this week has been such a test of patience. I am failing miserably. It does not help that patience is not a virtue I am blessed with. Then to have to maintain patience with Coulby when he does not want to eat anything, and I mean ANYTHING, well...it is just next to impossible for me. And I know that he did not ask for any of this. This life that he was given: always having food pushed on him, always having to drink his concoction of formula and medicine, having monthly blood draws at Hopkins and enduring hospital stays when illnesses cannot be managed from home. The poor kid has been through so much in his short life.

Here is to hoping that after four days of not feeling well, Coulby will start to rebound and get back on metabolic track. It is emotionally and physically draining to be a parent of a child with a metabolic disorder any day, but especially when he gets sick. My impatience comes mostly from my fear of Coulby becoming hyperamonemic, with the possibility of brain damage, and ending up at Hopkins, confined to a bed with an IV in his arm for several days. I know that people cannot really know what this experience is like unless they live it, but I always hope that by blogging, those who do not live with a UCD day in and day out can at least learn what it means for those of us who do. And for those who do, I have the utmost respect for you because I know exactly what it is like!