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...

Back to Blogging

Let me clear the cobwebs and blow off the dust and get this blog back up and running! I've been away for a while. School happened. Long days at work happened. Life happened. And my blog, on my 'to do' list, kept getting put off until it no longer had top 10 status. But the truth is, I have missed it. Greatly. So on this day, home sick and unable to tackle any 'to do's', I reconnected with my old friend; my blog.


So many months have passed between posts that it is difficult to even know where to begin. Life has changed in so many ways that it is almost unrecognizable to last year's version. And amazingly, among all of this change, one thing has remained the same: Coulby. Sure, his face has matured, he has lost some teeth along the way, he is a little taller and starting to read now and refining his Wii skills, but he is still the same miracle that he always has been. He still amazes me each and every day, as I watch him grow and mature into his future self. And he is still kicking Citrullinemia's a** and defying all odds. That's my boy!


Coulby has had his fair share of illness since the start of school, with numerous stomach bugs, colds and other assorted viruses, and (*knock on wood*) has been home to get through them all. My little boy, who has been stuck with needles and pumped full of fluids and meds and pushed to meet daily protein and calorie requirements every single day of his life (except for his first three days in this crazy world) and whose doctors were only "cautiously optimistic" at diagnosis, is...well...thriving; living! And living a pretty normal life at that. I cannot help but be amazed every time I reflect on Coulby's life. It is difficult, and downright painful, to remember the days of rushing Coulby to Hopkins at the first possible sign of illness. If he so much as hiccuped and spit up as an infant, he was whisked off to the ER to make sure some illness was not threatening to elevate his ammonia. And in those early days, when his immune system was not as strong as it has become, he did spend many sleepless nights hooked up to IV's, battling the body's natural defenses against illness that, ironically, threatened his life. Illness is still a threat and nothing to be taken lightly, but now I know Coulby can and has taken on these battles at home. And that is ultimately one thing every parent of a child with a UCD hopes for.


Coulby is strong. He takes on life without trepidation. Lives life to the fullest and accepts his disorder and all that comes with it, even when it draws him away from being carefree and innocent. I admire him most in those moments. When he has to stop playing, or take time away from fun being had by his peers, to drink formula or eat precisely weighed out food to meet his daily needs. Because it is then that I know my free-spirited Coulby wants to just do his kid thing, but switches gears just long enough to deal with the reality of Citrullinemia as a part of who he is. For those who do not witness this in their own child on a daily basis, it is hard to understand why it is so admirable. But it is. Truly.


I wish I could draw upon even a quarter of Coulby's amazing self. I know I would be better for it. His strength. His steadfast determination. His delight in life. His unreserved, loving nature. I do my best as an imperfect adult scarred by reality to teach not only Coulby, but both of my children, all of the knowledge I have to offer them. But I have found that my children teach me far more than I ever thought possible when I stop and take time to observe to them. To listen to them. To admire them!

There goes my baby...

Everyone told me time would fly by. That he would grow up fast. Not to wish the days away because they would be over before I could blink. Of course I half listened. He was an infant and I would rock him to sleep only to have him pop his eyes open the second his sleeping body hit the crib. I knew it would be like that forever. Sleepless nights that left mama and baby exhausted and in tears were something I got used to. Bottles and wipes and diapers and snacks and extra changes of clothes and toys were permanent decorations in the house and car. I carried him on my hip most days and it was a perfect fit, not to mention an upper body workout. And then, one day, he put himself to sleep with no rocking necessary. He decided that nighttime was made for sleeping. Sippy cups replaced bottles, underwear replaced diapers, clothes got bigger and toys more high tech and expensive. And that perfect fit? It is sadly no longer. I should have listened.

Coulby started first grade at the end of August and I am lamenting his infancy. The adjustment to knowing my oldest is now a first grader has been way more difficult for me than sending him off to either preschool or Kindergarten. Why? Well, look at him! He is a little man! I swear he grows right before my eyes!

I guess I just never thought this day would sneak up on me so quickly. There were times when Coulby was a baby that I was not even sure I would send him to public school. The thought of exposing him to so many illnesses terrified me. My plan was to protect Coulby's health and keep my sanity intact by secluding him from any and all threats. I would have done him such a huge injustice in doing so. He loves school. It suits him.

Now I repeat the advice given to me because my baby is growing up way too quickly for my liking. And every time I pass it along I want to roll my eyes because I know how it sounds; that it is meaningless to the sleep-deprived, frazzled mother with a baby on her hip. But I say them anyway because eventually, for all of the mama's out there, these words ring true.

Just a Reminder...

I woke up this morning to the sun shining and the promise of another great beach day. And while I know to appreciate every day that I have in this world, not just the ones that I have on vacation, I fall into the same rut as the rest of us. Knowing that I have it good and taking it for granted. Knowing that I have a life full of miracles and not quite making the most of them every day. Do not get me wrong, because I DO count my blessings every time I look into my sweet boy's eyes. I know what I could be missing if things had gone differently at the beginning of his life. But it is human nature to take for granted what you have...until it's gone. So I posted this quote as my Facebook status for the day, not knowing how poignant the words would be by the end of the day: "Stop acting as if life is a rehearsal. Live this day as if it were your last. The past is over and gone. The future is not guaranteed." ~Wayne Dyer

And today could be your last. Life can be over in a flash. In so many different ways. I have vacationed in the Outer Banks of North Carolina every summer for the last 18 years, with my parents as a child, and now with my own children. Every summer I know going into the ocean that there are great risks in doing so. Sharks (*shudder*), rip currents, rogue waves. And I do take those risks seriously. I do respect the ocean. But I, like so many, believe that nothing will happen to me. Because I am careful. I am aware of the risks. That makes me invincible, right? I think that is human nature to conjure those thoughts.

I believe that the couple I watched die on the beach today probably believed the same things. Yes, I said I watched a couple die in front of me today. And I am forever changed for it. I did not know them. But they were loved by someone. They were parents. A sister. A brother. Friends to someone. To many, probably. And they went into the ocean to swim. Such a simple mission that ended in such tragedy. I watched as strangers swam out in an attempt to help strangers swept out by the power of the ocean currents. I watched as lifeguards plunged into the ocean to save lives. I watched as four people were pulled to shore, two gray and lifeless. And I watched as teams of paramedics worked for ten minutes straight trying, to no avail, to resuscitate a man and his wife. Two lives taken by a rip current. In an instant. Life is so fleeting. And these are moments that remind me of that truth.

I was deeply disturbed by what happened today, not just because of what I witnessed, but because I know it could have happened to anyone. To me, even. We were out in the ocean today too. WITH the kids! (As an aside: They do wear life vests whenever they are even near the ocean...by far the best investments we have ever made!) But I guess today was not my time. So now I will take the events of today with me for life and use them to count my blessings. To be thankful for every day that I have. For all of the people in my life.

How to Save a Life

"Mommy! Come here! I have to show you something!" he shrieks in excitement. I prepare myself for the "mommy reaction." You know, the act-like-it-is-the-coolest-thing-ever reaction you give your kids when they do something they believe no one else has ever done. In that one moment my kids can feel like a king or queen. Love it! Anyway...I follow Coulby, who is practically skipping with excitement, out to the garage and, pointing with enthusiasm, he says,"Look! Look what I found! It's a hummingbird!" No way! Not again. But there it was. This tiny little thing covered in spiderwebs from beak to wings just sitting on the garage floor. This is the second hummingbird to find its way into the garage this summer. Not quite sure what they think is so appealing in a garage full of clutter and spiderwebs, but whatever. Coulby was ecstatic that he had found this hummingbird and that we were going to save it.

I scooped the bird up gently and carried it into the house. Not sure if it was on its way out of this world, I told the kids that we could try to give it hummingbird nectar to help it fly again. The bird was so still in my hand, and its eyes were closed. But the second I started trying to get the spiderwebs off of its wings, it came to life and took flight in my kitchen. Kind of a drowsy flight, but it managed to perch on the top of the window. By this time the cat was trying to get in on the action, so I got the bird in my hand yet again and held it closed this time. Coulby really wanted to hold it, and I was a little hesitant, but the look on his face was one of such excitement that I couldn't resist. He was so gentle with the bird and tried to pet it while Caroline looked on like a little mama, talking to the bird so it knew it was okay and that we were going to save him (or her...not quite sure).

We managed to get the hummingbird to drink some nectar (Pennington pre-made is the BEST!) and when I took it outside and opened up my hand, it took flight. I watched it fly high into the sky until it disappeared in the distance. And while I loved getting the opportunity to hold this feathered friend, let my children hold it and recharge its energy, I hope he does not come back to visit.

This was a bright spot in the weekend for the kids and myself. That and the fact that Coulby is getting through another illness at HOME! He started complaining of a sore throat around last Thursday, was waking up in the night Thursday night into the early hours of Friday morning, and had started with decreased appetite somewhere in between all of this. There was obviously something going on, but we did not know what until late Friday afternoon. I had thought nothing of the sore throat until little reddish bumps resembling bug bites started popping out on Coulby's ankles, the bottoms of his feet and around his hands. He had the telltale sores in the back of his throat, common to Hand, Foot and Mouth disease. UGH!!!!

So I know it sounds horrible to call it a disease, but that is how it is is referred. And it is running rampant in the childcare center where I am working. It started in the infants room (and yeah, that is where I am...of course!). Despite my greatest efforts to clean and sanitize absolutely EVERYTHING in the room about a million times, it still managed to make its way up to the school-age classroom upstairs. Go figure. And of course Coulby would get it. I kind of anticipated it and hoped for it to bypass my little man, but no such luck. While most of the babies have had fevers along with the bumps and sores, Coulby never presented with fever (whew!) We are about 4 days in and he seems to be getting better, despite a continued decreased appetite. Hopefully that will pick up again soon. Really that has been the most stressful thing about this illness. That and his restless nights. But the eating thing is always worrisome.

I do feel lucky every time Coulby gets sick and can stay home through it all. I know that things could be way worse. While it is no fun for Coulby to be sick, and it usually means less sleep for all of us, at least he is home. Lost sleep is easy to remedy, and a small price to pay for Coulby's good health.