Wednesday, December 2, 2009

'Tis the season!

I have felt like a scrooge this year as the holidays fast approach. It's just been a chore to try to muster up any holiday spirit. This is extremely unusual for me, who usually drives myself crazy with Christmas cheer! Yes, I am one of those annoying people who coordinates wrapping paper and spends way too much time tying on bows and curling ribbon, and even goes to the extreme to make my own gift tags. No easy stick-ons for me! Not this year. I have minimal shopping done, have no ideas for what I am getting people on my list, and was thinking of just using gift bags instead of bothering with wrapping paper...the ultimate sacrilege!! So I forced myself to drag out the tree from storage today and lugged up the container of ornaments.

I have realized one thing in doing all of this: decorating a Christmas tree is truly an art! Do you realize this? If you have an artificial, pre-lit tree like me (even though I think real trees are way better), you have to test the lights. Are all of them lighting? Of course most of mine were not lit this year! Just par for the course. My hubby managed to get all of the lights on again minus two full strands that refused to cooperate. This took about an hour or so. And luckily the two strands are both at the bottom of the tree and scattered so they are really not that noticeable.

Then the garland has to be strung. I have trouble with this every year! I always end up having to tighten the garland in order to get it to cover from top to bottom. That means making the really annoying and very inconvenient circle around the tree, which is crammed into the only corner of the family room big enough to house it through the holiday season. I have to make sure there is equal room between layers of garland, otherwise the whole tree looks unbalanced. There is another 30-45 minutes.

The next step is to add the Christmas balls to the tree. I choose to use red each year because I think they ground the tree. Who really cares if the tree is grounded though, right? And my mom passed some Christmas balls on to me as well, so those have to go up after the red balls. This seems very important to make sure that the Christmas balls go up on the tree first. Come to think of it, I remember my mom always doing the same thing. She taught me to use the balls as filler and to tuck them deeper into the branches. Because really, you want people to notice the ornaments, not necessarily the balls on the tree, right?

After the lights have been checked, the garland is up and the Christmas balls are arranged, I can begin hanging my ornaments. I group a lot of mine. Parts of a series get put together, as do all picture ornaments. I have so many of the kids and our family throughout the years that it is fun to keep them close to each other so I can see how much the kids have grown. My favorite ornaments make it toward the top of the tree to avoid little hands, and those that I have less of an attachment to (and would not mind being broken) get hung on lower branches. This part of decorating takes forever, primarily because each ornament is kept in its original box and bubble wrap, etc. I know, I know: OCD! (Are you just now realizing this?)

Any ribbon gets strung on the tree next. This has to be done well so that it does not look like it was an afterthought. The ribbon has to be woven and twisted in between branches and still look natural. Again, just like the garland, there has to be even spacing between each row of ribbon. It just looks better. I actually doubled my ribbon this year. Red and silver. I used more silver and then scattered some red in there.

And to top it all off (literally), is the tree topper: an angel, star, etc. All personal preference. I use an angel. Voila! The tree is trimmed! Or decorated. Or whatever.

Am I the only one who makes setting up the Christmas tree such a process? Other than my mom? Sometimes I wonder. And worry. About myself, I mean. But you know, going through my OCD-driven process is part of Christmas. It actually helped me kick off the Christmas season in a most unscroogy way! I guess it is beginning to look a lot like Christmas...

Thursday, November 19, 2009

Rolling with the punches...

Life sure can throw some punches. Some are total knockouts...others just kind of take the wind out of you for a while. And then there are those times when you take the knockout and get the wind knocked out of you all at once. But what is the saying? You gotta roll with the punches? That is all we can do. Roll with them. Learn from them. Gain strength from them. And move forward.

I have found my strength in having Coulby. In having both of my children, actually, but especially in having Coulby. It is very painful to re-live those first few days of his life because I honestly did not think I would live through them. There was so much despair and uncertainty. I went through the motions every day, but felt mostly numb and alone in the world. It did not seem like life as I had known it, and me as I had known myself, would ever exist again. But in the darkest of hours I found my courage and my strength. And as time pressed on, I found that I was living; that I could survive. My experiences with my son have made me a better person. I appreciate the small things in life so much more now. I realize how fragile life truly is, and try with all of my might to find something positive in everything (even when I do not want to).

That does not mean that I never fall anymore. I did just the other day. Coulby seemed just a little "off," drained of energy way too early in the evening, having excessive behavioral issues in school, and just not having much interest in food or drink. All of the warning signs of imminent metabolic danger. After two nights of this, I let myself succumb to the worry and frustration of the situation. I felt the anger boiling up because something might have been about to happen with Coulby that could require hospitalization. I started to doubt my usually keen intuition. All of these things are those which I try to suppress. Because there is no point in allowing them to consume me. My husband and I both agreed that we needed to take the situation in hand and schedule an impromptu visit to Hopkins to make sure everything was looking okay with Coulby and his metabolic health. This was the punch that knocked the wind out of me.

I was already down when I got the knockout punch. My husband's uncle, only 48-years-young, died suddenly. Such a special person taken so young was just too much to bear. It seems that we are never given just one challenge at a time. And sometimes it seems like you will never stand up again. But we learn to do just that...somehow. Maybe not right away, but eventually.

Our family gathered together during our time of loss. And Coulby was seen at Hopkins today. His impromptu visit resulted in an ammonia of 25 (woo hoo!!) and a very reasonable explanation for his behavior. He has been fighting off a virus (at home, mind you...another woo hoo!) and also received the H1N1 vaccine. His already compromised immune system also had to react to the vaccine, and in doing both of these things at once, it caused his body some distress. Not enough to land him in the hospital, but enough to have potentially caused a metabolic crisis. By tonight he was fully charged and had regained some of his appetite. What a relief that was. And yet another reminder to me to stay strong even when I feel like I cannot.

The pain of losing a family member will not subside easily, and in all honesty, I am still in shock. But I will rely on my strength to start to stand up again and slowly accept things the way that they are now. I am glad to have known my husband's uncle and only wish he could have had more time with us here on earth.

Sunday, October 11, 2009

You ROCK, mommy!

I am reveling in the fact that my son actually thinks I am cool...for now. I know that very soon I will be old, uncool, out of style, boring, get the gist. So when Coulby looked at me the other day and said, "Guess what. You ROCK, mommy!," it made me stop in my tracks to say, with as much surprise as gratitude, "Thanks, Coulby!" Coulby's exclamation surprised me because I did not know he even knew that expression, and rendered me speechless because no one has thought of me that way in F-O-R-E-V-E-R. Those days of being cool seemed to be long gone. And now my son thinks I rock! I will take it while I can.

The ironic part about it all is that I think Coulby rocks! He is such an awesome kid, and I am not just saying that because he is my son. He just rocks. Coulby has endured more, experienced more, suffered more, and overcome more than most kids his age. And he has done it all with grace. And a little bit of attitude. I give him that because, well, he has earned it.

Coulby started kindergarten in August, and as much as I hated seeing him get on the bus to ride into the deep blue germ-infested yonder, I knew he needed that. My stomach got tied up in knots knowing that he would be in school all day this school year, and therefore exposed to a full day's worth of germs instead of only a pre-k 2.5 hours' worth. But Coulby loves school. I mean absolutely loves it! I knew my fears of germs and illness could not, no, would not, get in the way of Coulby's natural progression to the next step in his education. So off he went.

No one knows what it is like to have thoughts of kids coughing without covering their mouths, or sneezing into the open air, or wiping snotty noses with their hands and then touching everything around them, swirling through the brain. Thoughts of colds and flu, especially the hyped-up H1N1 virus. That is what I think about all the time. Protecting Coulby from all of that. Ways that I can teach him to stay clean and healthy. Ways that I can teach him to avoid everyone who appears to be ill. But how can I do that? I mean without putting the poor kid in a bubble?

Despite all of my best efforts to keep germs at bay, Coulby brought home a nasty cold several weeks in to school. He made it through that like a champ. Then on Thursday morning he woke up warm to the touch. His temperature was 101.2 and he complained of a stomach ache. When I told Coulby that he had to stay home from school that day, while masking my worry that kicks in whenever Coulby gets sick, he retracted his complaints of a stomach ache and said he was fine. He actually started crying because I would not let him go to school. That is how much he loves it! (We shall see if that lasts into the next several years when he is bringing home school work and studying for tests.) Coulby seemed to look a little more tired than usual, with puffy red rings under his eyes, but other than that, I would not have known he was sick. He was playing, talking, running around, and still had an appetite. Then I got a call. One of the kids in his class was confirmed to have H1N1. My stomach was suddenly full of butterflies.

My body went into overdrive after that phone call. Calls to the geneticist, calls to the dietitian, Internet searches on symptoms of swine flu...anything that I thought would help us get through this illness at home. And we did! Coulby had a fever for days that only broke yesterday evening, and has maintained his normal energy level during the whole thing. This has been another obstacle overcome, at home, by my brave boy.

And to this I say, "You ROCK, Coulby!"

Thursday, September 10, 2009

There is no such thing as easy...

...not in my world. My OCD-laden world. When did things get so complicated? How has planning a 3rd birthday party for my little diva grown so wildly out of control that there is no hope of reigning it in?

My mind works in mysterious ways. I get something in it and ba-da-bing there it is and there it stays. The idea grows and takes on a life of its own until it consumes my every thought and dream. I have to see it through before I can rest easy. And that, my friends, is how I have gotten into planning the party of the century for my baby girl (who is becoming less and less of a baby each and every day...sigh; sniffle).

Caroline is turning 3! 3. Have 3 years really whizzed by already? Whew! Where have I been? I always have such a good time planning for a party. I love to entertain (although being an exceptional hostess is not my strong point) and I LOVE attention to the smallest of details. I think it is the little touches that make a party a failure or a success. If you go all out for a party but chintz out on the cake, for example, people remember how much the cake stunk, not how awesome the party was. If you serve a meal fit for a king but serve it with paper plates and plastic ware, no one remembers how divine the food tasted. So I think you have to decide to go one way or the other. You cannot have both.

I started thinking about what I was going to do to ring in Caroline's 3rd year of life months ago, although no light bulbs came on until about a week ago. Passing thoughts of Caroline's upcoming birthday would come and go and then BAM! I got it! The idea that I have obsessed over since it came to me. I love gardening. Caroline loves to be outside; to play in the dirt, plant, find bugs. Why not combine our interests and have a garden party? Something girly for her that would include a focus on my most prized flowerbeds and gardens. Yeah, what a fantastic idea, if I do say so myself.

Ideas started small, but the more I thought about things and researched on-line garden party ideas, the more elaborate they became. Then my mom, another artistic mind, started giving me ideas that appealed to me. Before I knew it I had a list about a mile long of ideas and things that I would need to pull them off.

So what is the big deal? This always happens. I jump in with both feet and submerge myself. EVERY. TIME. Then I get overwhelmed until I feel a full-blown panic attack coming on. And I say I will scale down the next time. But I cannot help myself. I think I am just one of those people who loves to do it all, who wants to do it all, who complains about doing it all, and then does it all again! The end result is usually as close to my imagination's expectations as possible and I am always glad that I put forth just a little more effort.

So I have been spending each day doing something to plan and execute this garden party that I can visualize in my mind, and I only hope i can pull it off. I know my hubby is thinking I am insane, and my mom thinks I need to get a life, but believe it or not, I am excited about it. I only pray that we will have a good turn-out. That there will be plenty of guests able to enjoy the fruits of my labor; the creation of an idea that grew into an obsession.

Tuesday, August 25, 2009

There's no manual?

Okay God, I need some reassurance that I am doing this right. Because I often feel like I am failing miserably. Where are the instructions? How do I do this whole parenting thing?

I want to raise my kids to grow into respectable adults with good morals and a solid sense of self. To be comfortable with who they are. To accept their weaknesses and accentuate their strengths. Probably all of the same hopes that every parent has for their children. But I wonder if I am doing everything that I can to do help them move toward these hopes for their future. What if all of the mistakes that I am making far outweigh the things I do right? What kind of a man and woman would my children become then?

I think it is human nature to question our parenting "skills," if you want to call them that. I cringe when I think of all of the times I have lost my temper or not paid enough attention, or let my children down. All of these failures come flooding back to me when I feel scrutinized by others. Most of the time when I go out and about with the kids, they are pretty well behaved. I mean, there is always the usual whining for something that catches their eye, or the "I've had enough" antsiness (is that a word??) when I have lingered too long. But for the most part I do not have the kids that are running rampant through the store, picking up everything they see, throwing tantrums when they do not get what they know the kind I am talking about. We have all experienced that.

But the other day as I was shopping for a birthday present, I had the kids with me and they were starting to get bored. I knew I only had a limited amount of shopping time and it was almost up. (I should really set a timer next time.) We went down an aisle where there were a bunch of feather boas hanging and the kids zeroed right in on them. What fun! I let them each pick a color and wrapped them around their necks. Coulby was adorned in blue feathers and Caroline in pink. They were so proud of themselves and I thought it was adorable. They were giggling with each other and happily showing their boas off to an invisible audience as they walked to the aisle right across from me. I had them in plain view, only a few steps away. I was admiring their delight at something so simple when an employee, who apparently did not find it so endearing, walked right up to them and asked them for their boas. Immediately defensive, I walked--more like marched--over and held my hand out to take the confiscated boas from the woman. She gave me this stern tsk-tsk look as she stiffly handed me the boas. I was so taken by her obvious disapproval of my children's shrieks of delight and fashion show, and my mind quickly transitioned into the mommy overdrive that is ferociously protective of her kids. I wanted to say something and my mouth would not form the words. Nothing came out. I used my face instead to send her my message. Literally the epitome of "if looks could kill." I knew my words would not have conveyed my emotions nearly as well. I hung the boas up again, knowing that if I had bought them as planned I would always be reminded of the woman's contempt. Silly, I know, but I just could not bring myself to buy them after that.

When my blood had stopped boiling, I felt the tears stinging behind my eyes. I let that woman get to me; make me doubt my parenting. I do not know why, because not a moment before I had stood my ground with confidence. When I really thought about it later, I think my ego was bruised. Because someone disapproved of what I was allowing my children to do. We all have an ego, and I try not to let mine get in my way, but like I said before, we all question our parenting. It takes just one scrutiny to allow that uncertainty to bubble to the surface, and in that moment, our defenses are down and we are vulnerable. Our ego is vulnerable.

I shrugged this off as another learning experience. It was a reminder that we all do things differently, and some people are more prone to judging than others. The woman in the store was not right. She was not wrong. She was looking at things through her own eyes. And how she sees the world, and the world of parenting, is obviously not going to be the same way that I see things. Since Coulby was born, I have looked at a lot of things differently. I see the blessings in my life, and feel grateful for the smallest of accomplishments my children make. I know that each of thier days, and mine, could have been so different. And I allow my kids to experience all they can because they can. Even if it is just the simplest of things, like feeling feathers tickle their necks as they strut around wearing boas. How grand!

Tuesday, August 4, 2009

Road Trip: No Boys Allowed!

My ideal environment for writing is one of peace and quiet, but that seems to be a rare commodity anymore. With only two kids, you would think they could not generate that much noise. Oh but they do! My daily life is lived amongst shrill screeches and sibling fighting and very loud boy noises. I am a quiet person by nature, but I have been forced into this chaos, and I honestly think I have mastered the skills to tune out all of the background noise in order to preserve my sanity! Today is no exception. I am filtering out the above mentioned as I write. And now on to the inspiration for today's post...
I have never really thought about the fact that I got 2.5 solid years of one-on-one time with Coulby, and none with Caroline. Coulby had the advantage of being an only child for a while and had all eyes on him. So when I had the opportunity to do something with my daughter, just the two of us, I jumped on it. Well, it involved my hubby taking some time off from work to make it happen (thanks, honey!), and some babysitting arrangements with my dad (thanks, dad!), but everything worked out.
For years my grandmother has talked about having a family reunion for her entire side of the family, including those distant, distant relatives that are related somewhere along the line. She and my aunt finally made this dream come true when they helped organize a reunion in Nashville, Tennessee. I really wanted to go so that I could see family that I have not seen in years, but also because it was a chance for Caroline and I to have some real quality time together. Some girl time. So our road trip was planned. My mom and aunt and I would be traveling with Caroline on a 10+ hour drive. A girl's road boys allowed!
I am not sure what I expected from Nashville, but what I saw was not what I anticipated. It was beautiful countryside, a nice clean city, and the nicest people you could ever meet. Everyone was friendly. I really loved it! And Caroline was a perfect angel, enjoying every second of her girl's time and all of the attention she got wherever we went. My favorite part of each day was lying down beside her in the bed and watching her fall asleep.
We crammed so many fun things in to the time we had in Nashville. We had a nice dinner with family, a great day of shopping in Nashville's huge mall, a tour of the Gibson guitar warehouse (thanks to my uncle and his connections), a bus tour of downtown Nashville (including The Hermitage; president Andrew Jackson's house), an evening at the Grand Ole Opry, and a tour of the Country Music Hall of Fame. Nothing beat the time we got to spend with family.
I hope that I will get the chance to do something like this with Caroline again in the future, but I am just happy that I got to experience Nashville with her. And I have TONS of photos to prove it! I would like to plan a Christmas in Nashville at the Opry Hotel (which is exquisite and breathtaking), but that is a goal for the future. I think Coulby would really love it! And while I did not buy much in Nashville, I did take home some kick butt cowboy boots! How could I leave the heart of country music without a pair?

Thursday, July 9, 2009

A quiet Independence Day...

Independence Day is always one of my favorite holidays to celebrate. Because it is the ultimate American holiday and a great reason to party with friends and family. We have a tradition around here to serve ribs on the 4th of July, and this year was no exception. Richard's famous ribs are much anticipated and never disappoint. There were lots of sides to make your mouth water: homemade potato salad, pasta and green bean salad with fresh herbs, homemade rolls that mom has perfected and could sell worldwide, cole slaw...hungry yet? We had quite the holiday feast! And I got to put the flowers from my gardens to good use by creating a beautiful bouquet of wildflowers, topped off with an American flag.

While we did not have a fireworks show of our own, we watched other's shows from our front porch, and I captured a few decent (but not great) shots. Fireworks: the classic ode to freedom. The loud booms and bangs that result in beautiful colors in the sky and never fail to produce oohs and aahs from onlookers. I do not know how many times I have seen fireworks in my lifetime, and I never tire of them. What is the fascination? The kids enjoyed them this year, too. Coulby used to be terrified of fireworks! Even last year he was watching them from behind the safety of the windows. A year changes lots of things, and I guess he is a little bit taller, a little bit older, and a little bit braver!

The kids were so excited about "lots of people" coming over on the 4th, but we really had a quiet holiday. I guess because the 4th fell on a Saturday this year, many people planned their own celebrations. We had mostly family and a few friends come over, and it was actually nice to spend the day together without a huge crowd. We did miss our friends the Mooney's though. They were supposed to be here, but Corrigan ended up being hospitalized as a result of metabolic-related issues, and therefore did not make it. That was the only damper on our holiday. Poor little C was on my mind most of that evening. Maybe next year! He is doing much better now, but keep him and his family in your prayers!

As you can see, Coulby had a blast on the 4th and was so happy to wear his motorcycle shirt. My mother-in-law gave that to him so he had something with red, white and blue to wear, and he absolutely LOVES it because of the motorcycle. All boy for sure. Caroline got to wear cute pom pom hair ties in her pigtails...Gymboree has the cutest little hair things for girls!

I hope you all had a as great a 4th as we did, filled with lots of good food and company! Did anyone get some photos of fireworks? I would love to see them!

Sunday, June 28, 2009

Splashing into summer!

I love the smell of sunscreen! Not so much because of how it smells, but more for what it stands for: Summer. Sunshine. Days spent outdoors. Fun! And I love the benefits of sunscreen, too, although I think I appreciate those much more now that I am older than I ever did growing up.
It used to be cool to fry your skin in the sun to sport the best tan. Guess lots of us are not thinking it is so cool now that the sun spots have started popping out and the wrinkles are making their premature presence on our faces. But I have gotten away from myself. I really do love the smell of sunscreen, as well as all of the other classic smells of summer.
We have kicked off our summer by investing in a pool. Nothing fancy, just an Intex 18' above-ground pool. It seems like a good starter pool, and it is a good way to see if we get enough use out of it to invest in a nicer one. So far we have been swimming every day, so I guess we are on our way to bigger and better things in our future! The kids have loved it, especially Coulby, who is learning to swim with the help of a life vest. And what a great life vest! It is the perfect way for Coulby to be able to swim on his own without all of the safety risks. Now that does not mean I do not get in the pool with him. Of course I do. But it has really been great because he can stay afloat on his own and learn the basics of using his arms and feet to swim. Caroline has her own life vest as well, but is not quite as confident as her big brother, and mostly likes for me to hold her and walk around the perimeter of the pool with her.
Making the decision to buy the pool was tough because I was very nervous about having a pool with all of the risks it would pose to the kids. We really thought about it before we took the plunge (ha.). We invested in chain locks for all of the doors in the house so that there would be absolutely no way for Coulby or Caroline to slip outside to the pool unattended. It has been an easy adjustment to get used to all of the locks, although I do feel like we are living in some sort of compound. Now my nightly routine consists of locking the bolts and locking the chains x 4!
So the pool has been the highlight of the summer so far, but we have so much to look forward to! I do not know how the time has slipped away so quickly already, but the 4th of July is almost here, and that is always one of my favorite holidays to celebrate. It is such a classic summertime celebration, full of patriotism, good food and, most importantly, friends and family. I will be attending a family reunion at the end of July in Nashville, which will also be Caroline's first road trip. Right after that is our long anticipated beach vacation! And I guess after that the summer is basically over. Boo. We will be doing a lot of other little things here and there (like zoo trips, aquarium trips, lake trips, and get-togethers with friends). I just love the limitless possibilities of summer!
On another note, Coulby had a Hopkins appointment last Friday and we got to see our dear friends the Mooney's while we were there! Coulby and Corrigan had the hard job of enduring blood draws, but it was nice to share an appointment day. Both boys grew and pleased their geneticist and dietitian, which is always the goal! Coulby's ammonia was great at 26, although his amino acids revealed numbers that were a little too high, so we have set him back on track by decreasing his protein by the slightest bit. Coulby seems to be doing well, and overall, he had a great appointment. The high amino acids mean nothing more than a growth spurt that has come to an end, so nothing to worry about. It seems that the sun and swimming has agreed with him!
I hope you are all having a fantastic summer and getting into lots of fun! And don't forget the sunscreen! Oh that sweet smell!

Tuesday, June 16, 2009

Graduation Photos

I graduated...

(That is really not excitement...he was just yawning)

Pre-K down, K-12 to go!

My baby graduated...from pre-school, that is. Maybe not considered such a big milestone by most, but a HUGE one for my little man. I did not know if I would ever see the day that Coulby went to a public school, much less blossomed in one. I have watched Coulby grow into himself in the months since he started school, and it brightens my days.

I remember when Coulby was an infant and I declared that he would be home-schooled so as not to expose him to the germ-infested classrooms of the schools, just begging to make him sick and hospitalized. Most people thought it a great idea, although I must say that Coulby's geneticist and dietitian ALWAYS encouraged us to send Coulby to a traditional school environment. It would help with his socialization, they said, and would expose him to germs in order to build up his immunities. Coulby deserved the chance to go to a school with a teacher who was not his mom, and other students who would become his friends. I am so glad that my declaration to home school Coulby was not the path that I chose for him. I am glad that I gave him the chance he deserved.

I did not cry when the teacher introduced the graduating class of 2009 and the procession of boys and girls filed into the room, with Coulby bringing up the rear. I thought it dear when he spotted his entourage of fans in the back of the room and cried, "Look! There's Poppop! I wanna go sit with him." And I thought it very much in character that the only one whose hat was pulled so far down it almost covered his eyes was Coulby's. Guess who was the only one not singing along with the class? Coulby. He was more interested in sitting down, standing up, and waving hello to us as we tried to no avail to gesture for him to pull his hat off of his eyes and sing along. And that is Coulby. Always has been. You cannot fit him into a mold no matter how hard you try to squish and squeeze him in. Despite all of the times I find myself wondering how I am going to make it through Coulby's toddlerhood, much less his tweens and teens, I would not want to change him; mold him. I love that he is special, not to the point of being strange, but just special enough that everyone who comes into contact with him knows he is. They just know. That is Coulby.

This school year has been a mixture of ups and downs, but an overall success as far as I am concerned. I was so nervous to put Coulby into public school that I think my nerves made me cry more than watching Coulby walk into his classroom for the first time. Ashamedly, I anticipated the worst: germs=illness=living at the hospital during most of the duration of Coulby's first year of school. I was surprised...pleasantly. And reminded to keep the faith. Coulby was sick more times than I can even begin to remember during the past school year, and has been hospitalized for just two of those illnesses, one being metabolic related, and the other only to ensure hydration. TWO times! He endured the rest, including a stomach virus (which always landed him in the hospital as a baby) here at home. I got to take care of my sick boy from the comforts of home. Quite novel.

So way to go, Coulby! I could not be more proud of you! Of your accomplishments in school, but also of the person you are becoming. You are such a blessing and I know you will continue to touch the lives of everyone around you. My special boy.

Friday, June 5, 2009

The Shack

If I am honest with myself, I can admit that there are many things that I would change about my past if I could. The age old, "If I only knew then what I know now..." comes to mind because I think we, as humans, all tend to carry some regrets. They sometimes weigh us down. But I have also allowed myself to believe that some of the things that I would change if I could are the exact things that have made me who I am today. Out of regret comes knowledge. And if you are smart, you take that knowledge and use it to better yourself and those around you. If I was to say that I have taken my own advice for every regret I have, I would be lying. But the many regrets that I have chosen to use for good have made me better. A better mother. A better wife. A better daughter. A better friend and sister and acquaintance. Just a better person. I know that my past is what brought me here today.

I cannot describe myself as an avid church-goer. Many Sundays have passed in which a seat sat empty where I could have sat to worship. But I will not say that just because I do not worship in a church I am any less of a servant of God than those who gather under one roof. I am a sinner and I am weak in His presence, and I have a long journey to become the servant that I want to be, but I am trying. The journey that has led me to the Lord started when I was a little girl, attending the Catholic church with my parents every Sunday. I have lost my way many times as I have grown into womanhood, but I somehow manage to find my way back.

I remember when my husband and I, dating at the time, started attending church with his mother on Sundays here and there. The pastor is one of those who grabs your attention with his speaking voice, not because it is loud, but because it has an air of importance. You feel like you are commanded to listen, and the sermons flow from him with such grace and passion that they wrap themselves around you. I was amazed at how touched I was by his sermons, never having experienced such a grip in the name of the Lord. I guess maybe that was a turning point in my life, listening to his words. I always felt like the sermons were written just for me. They moved me in ways I had never been moved before, and I think it was then that I truly realized the Lord's grace. I am sad to say that I have not attended that church in a very long time, too afraid to expose Coulby to all of the germs in the church nursery, but I also know that I have to face my fears and let God do the rest. I know I must hand my fears over to Him. That is one of the things I am working on.

Then my husband and I were engaged and the same pastor mentioned above was to marry us. He required that we do pre-marital counseling prior to the wedding, to which I was agreeable, but had no idea what it would entail and how much I would take what I learned and apply it to my marriage. Looking back, I really think the counseling was one of the key pillars in what my marriage to my husband is today. We are solid, devoted, loving and faithful, with the Lord being the third party in our relationship. There was a biblical verse that our pastor asked us each to read and interpret, and I remember my naive and ignorant interpretation. The gist was that a woman should serve her husband. I, feeling very strongly about equality of the sexes, responded by saying that I felt like this was an unfair burden for a wife to be subservient to a husband. Shouldn't each person in a marriage get equal satisfaction? If the pastor could have, I am sure he would have clunked me upside the head (as in the V8 commercials) to wake me up! Instead, he listened to me without judgement, then listened to my husband, and only then proceeded to educate us. These two naive, dare I say dumb, young lovebirds needed the guidance that the pastor then offered: Marriage is not about subservience or dominance, but rather getting your satisfaction from satisfying your spouse. That was the light bulb moment for me (aha!) in which I got it. It explained everything...not just marriage, but a relationship with the Lord, and with any others in my life.

Now I have said it many times before, but I must profess again that I truly believe that my two babies are true miracles of God. All babies are. Having said this, I can also say that having Coulby could have shattered any relationship that I had with God. When he was diagnosed with Citrullinemia at 4 days old, I wept and let myself stray away from the Lord to ask, "Why him? Why me?," only to return to him in the same breath and pray that He wrap his arms around Coulby and heal his tiny broken body. In all honesty, "why" has been the hardest thing to keep at bay since Coulby's birth, because some times were so hard and I felt such despair that I could not focus enough to see all of the blessings we have been given. And I do count my blessings. Every day. I know what could be with Coulby, and how fortunate we are. And I praise the Lord, for he has wrapped Coulby in his embrace and breathed His life into him. Coulby might always live with Citrullinemia, and there will be many moments when it will seem unfair for him to have to suffer, but I have learned that those are the moments when I need to turn to God the most. I hope I can instill that in my children as they grow.

Now I am finally at the whole point of this post. I am an avid reader, and usually read books that are passed on to me by friends and family. My mother-in-law recently brought me a book and I added it to my stack of "to be read" books. I was in the middle of a book at the time, and when I was ready to read the next one, the cover of the book my mother-in-law had brought me caught my eye. It was not next in line, but it sparked my interest, and I began reading it: The Shack by Wm. Paul Young. This book has touched me in ways that I cannot even describe. It is almost as if I could follow the story like it was my own personal journey to the presence of God in my life. It opened doors that I did not even realized I had closed. A true must-read for anyone questioning their faith or longing for a better relationship with God or struggling with any aspects of life. A must-read for everyone! Best stated by author David Gregory's review: "An exceptional piece of writing that ushers you directly into the heart and nature of God in the midst of agonizing human suffering. This amazing story will challenge you to consider the person and the plan of God in more expansive terms than you may have ever dreamed."

If you enjoy reading, or even if you do not, pick up this book! You will not want to put it down! It is written so well, intertwining the story of a man struggling with his faith after he suffers a tragic loss when his young daughter is abducted and feared murdered, with the divine existence of God, even in our dark world. Reading this book is an experience in and of itself!

Tuesday, May 26, 2009

Memorial Day 2009...and a Hopkins update

Our Memorial Day was quiet. We chose to spend it quietly, with family. And it was nice. Some of the family came over for a late afternoon cookout, with Richard's famous ribs as the highlight of the meal, and the many sides to accompany them: potato salad, cole slaw, macaroni and cheese, homemade rolls (yum!), baked beans and corn on the cob. You know summer is quickly approaching when you start eating corn on the cob! It is one of the signs of warm weather and cookouts and vacation and no school. Let me tell you, the food was fantastic, but the company was better. It is just nice to get together with family like that every once in a while; to sit and talk and laugh and catch up. And then there were the drinks...
Now, I am not much of a drinker, but we did make some fruity Raspberry Fizz drinks: one shot raspberry vodka, one shot raspberry schnapps, 7Up and a fresh strawberry to top it all off. Man, it was good! Maybe too good. Like it went down too easily and tasted too good. But it was fun to try something new. I think that will become a new favorite at family get-togethers to come. Anyone second that?
Coulby and Caroline could not have been more excited about the family coming over, but were especially excited to wave their American flags (or Americal flags, in Coulby terms) around. They do not know the meaning of Memorial Day yet, but some day they will. We will teach them to honor our servicemen and women who fight for our freedom. And we will teach them how their own relatives have fought for freedom in wars fought long ago but never forgotten. There is honor in being an American, and I hope they always want to wave their country's flag so high!
I hope everyone else enjoyed their Memorial Day, and better yet, celebrated with family and friends like we did. Such moments are a blessing.
We ended our Memorial Day celebration to gear up for a Hopkins appointment today. Coulby had a routine appointment with blood draw this morning, and we are always tense until we get that ammonia. It was 44 today...breathe again! Although I like it to be in the 30's, I will take a 44. Coulby apparently lost some weight, which I found hard to believe with the new belly he is donning, but he did get a little taller. His caloric intake has been phenomenal (almost or just above 2000 calories a day!) and he has been eating like a champ. I think he probably suffered some weight loss when he was sick with pneumonia, but it seems he is well on his way to gaining it back. Overall it was a good check-up and we returned home, which is the outcome we always pray for.

Friday, May 22, 2009

Thers's no parenting manual?

I often question my parenting. Am I too laid back? Am I too hard on the kids? What do I do now? Am I teaching my children well? What if I screw them up? I suppose it is natural to have these thoughts as a parent, but they plague me because this is something truly important...okay, so I am the master of the obvious! But seriously, I want my children to grow up with good morals and manners, self-confidence but not arrogance, the ability to make good choices out of respect to themselves and others, compassion, ambition, sensibility, a drive to succeed (but not to the point where life is nothing but work, work, work!), an openness to allow their hearts to love...I guess pretty much what every mother wants for her children. And I am afraid to make too many mistakes. But where is my manual?

Working with preschoolers prior to having my own children gave me the experience I needed with young children, but could never have prepared me for having my own. No one could tell me what to expect when I was expecting, and honestly, I really did not want to listen anyway. I knew it would be an experience that I would have to go into alone, and that only becoming a parent and experiencing it firsthand would teach me what I needed to know. I only hoped that I could use some of what my parents have taught me that has helped me in my life and mold it into my own parenting skills. I guess I have done that, but it is not enough to put my mind at ease.

I know the world is a cruel place, although I love seeing it through my children's eyes. I love to see the innocence and the trust that only a young child can experience from lack of experience. That is never something I tire of. But I know I must do my part to prepare Coulby and Caroline for the world that is waiting for them, which is often not at all what I would like it to be. True, there is good in this world, and I have experienced and witnessed it firsthand. I want my children to be people who bring even more good into the world. Even just two people can make a difference. And I guess that is what bothers me so much. That I am responsible for guiding them into adulthood to become the do-gooders that I want them to be.

Every time I lose my patience I feel like I have let them down. When I am not paying enough attention to them, or when I do not seize a moment to enlighten them, or I miss a praiseworthy moment, I feel like I am letting them down. There are so many times when I have let an opportunity come and go and then I later wish I could turn back the hands of time. The reality of it all is that this is going to happen no matter how hard I try to keep it from happening. Because I am human. And I am a mother. And both of these realities are against me because neither humans nor mothers are perfect. Although some of us like to think we are! Ha!

I have learned that there is nothing I can do but try my best to be a good mother and person, and hope this will result in two kids who grow into a beautiful young man and woman. I see their personalities coming out more and more with each day that passes, and I see the person each is becoming. I smile when I get a "please" or a "thank you," or when Coulby or Caroline go out of their way to do something far beyond their years. I guess those are the moments to cling to. Those are the moments to build upon.

As I drove Coulby around on my father-in-law's newest toy, a gator, the other day, he looked at me with this smile on his face that just showed how pleased he was to be riding beside me; just the two of us. He said, "I love you, mommy," which made me just about break down in tears. Just the simplicity of it--that he was feeling that way at that moment and expressed himself without prompting or hesitation was enough for me to feel like maybe I am not doing such a bad job after all. Of course I am sure that one day I will hear the, "I hate you, mom," that so many mothers before me have heard, but I hope that it will be because I am making a decision that he will one day thank me for, realizing that it was in his best interest. I have been there myself with my own mother, who did not always make the most popular decisions, but always made them with me in mind, as I discovered later in my life. And how did she know she was doing the right thing then? I guess maybe she was winging it too, just like me. So maybe there is hope after all...

Monday, May 11, 2009

Illness Be Gone!

This is Coulby's new look...what do you think? He has been sick yet again with a cough, runny nose and an on and off fever for four days straight. Not fun. It seems like we have one healthy week for every three sick weeks. Not fair. Since Coulby had a fever even yesterday morning, we decided we should take him to see our local pediatrician. This was not something that required a rush to Hopkins (whew!), and in such cases we see the pediatrician and consult with the geneticist and dietitian.
Honestly I did not expect the pediatrician to be able to do anything for a persistent cough, so when my husband called and said the doctor thought Coulby has pneumonia, it took me a minute to process what he said. Coulby was given Albuterol via a nebulizer, and prescribed two antibiotics to wipe it out.
Of course I spoke to Coulby's geneticist about his diagnosis and prescriptions, and she seemed to think that from a metabolic standpoint, Coulby was handling this illness just fine. She was not concerned, therefore I was not concerned. It is just another illness to deal with, and we have had our fair share this season. I think we deserve a break! But I am thankful that Coulby is HOME through the whole ordeal and not in a hospital bed. Another blessing. I never thought my son would be able to weather so much from the comforts of home.
As for the photo, Coulby absolutely LOVES his new mask, and thinks it is cool that he can blow smoke "like a train." In fact, he keeps asking to "do his mask." At least it is a novelty for him...for now!

Tuesday, May 5, 2009

In Bloom!


Bleeding hearts

The last several days have been nothing short of depressing, with steady rain ALL DAY and all of the dreariness and gloom that comes with it. I really do not like the rain, but I do like the way it helps all of the world's most beautiful things to grow and grace us with their presence. My mood has been sour lately, in part because of the rain, and I have been struggling to fight away the doom and gloom. My allergies are flaring and I have a constant headache (you know the kind where all of the pressure sits right at the bridge of your nose?); my kids are going stir crazy being cooped up in the house all day, and we all know that means I am experiencing more hair-pulling moments than usual; and I really want to do some outside work and get my hands dirty.

You see, I have taken up gardening and landscaping in the last several years, and I really miss digging and weeding and planting. It relaxes me more than I ever thought it would. When I was younger I used to wonder how people could work in their gardens all day and plant and wear those ugly gloves and kneel on those silly gardening knee cushions. It seemed like such a dorky thing to do at the time. So I never envisioned myself actually enjoying it. Now it is my passion and I have joined the ranks of the dorky gardeners. I honestly think I could spend all of my days gardening. I kneel directly in the dirt because I cannot bring myself to use the knee cushions, and I have found that not all gardening gloves are ugly. I actually have a really cute pink pair, and I have seen some really great (and expensive!) patterned gloves. I have just been surprised at how gardening has taken a hold of me.

When we were building our house, I had no visions for future flower beds. But when Spring broke, I knew we would need some plants (and grass) because all that surrounded our home was dirt and lots and lots of rocks! So I went to Lowe's and purchased the first few plants for our home. When one of the plants almost died immediately after planting it, I dug out the mulch around it, gave it some TLC and water, and it made a comeback! I think that plant was the reason I got into gardening. Because I realized that I was capable of doing more than just killing plants.

And so it started. I found a nursery--a really nice nursery--and started buying more plants. It did not take long before I was a "frequent flyer" at the nursery. My beds have expanded and each time the weather breaks and Spring comes, I look forward to seeing the plants at their best. In their glory. In full bloom! Of course, I still find places to plant more and more to create new flowerbeds. I do not think I will ever get tired of planting and watching my plants grow.

So when the rain broke for a short time today, I jumped at the chance to get outdoors. The sun was not shining and it was not particularly warm, but it was not raining. Not a drop, nor a drizzle...nothing! It was so nice to get outside and breath the fresh air. And the kids were pretty happy, too! I wandered around the house looking at all of the plants in bloom, and realized that I have nothing to complain about or any reason to continue entertaining my bad mood. All of the beauty reminded me of everything I have to be thankful for. Almost every plant tells a story. The sedum were transplants from my (paternal) grandparent's house, dug out right before the house was sold after my grandparents were reunited in Heaven. The lilies came from there too. All of the azaleas were transplants from my parents, including one that came from my (maternal)grandmother's house. One of my mums was given to me at my baby shower when I was expecting Caroline. My burning bush started as a twig and came from my husband's late grandmother's home. And all of the lilac also started as sticks in the ground, taken from my in-laws' abundant lilac bushes. You see, my gardens are more than just plants to me. They have meaning, and in a way, I feel a part of my loved ones lost still live on.

If you have never gotten into gardening, try planting something this Spring. Even if just one plant. And something easy, like an azalea, sedum or a rhododendron. Take care of it and see how rewarding it is to watch it thrive and grow. You may find that you really enjoy it and want to add more plants. The best part is when next Spring rolls around, you will be greeted by new growth and blooms as a result of your two hands putting that plant in the ground. If nothing else, you will have positively contributed to the environment.

*Check out more of my blooms in my photo section along the right hand side of my blog page. I would love to see photos of your gardens!*

Sunday, May 3, 2009

5 years ago...

I remember how badly I wanted a baby before I was pregnant with Coulby. It was an indescribable emotion. Not like, "I think I am ready for a baby," or "It would be nice to start a family." It was more like, "I want a baby NOW!" My husband was a little less driven because we had not been married long before the plans for a family were set in motion. Despite his initial uncertainty about timing and diving into such a huge decision, my hubby and I were blessed to become pregnant right away and very excited to add a third member to our family of two.
I went through my pregnancy just like most other women do: with the usual excitement, uncertainty, anticipation...oh, let me just put it in "real" terms! I was excited and scared to death, in awe of what my body was capable of and horrified at how large certain body parts had become, loving preparing the nursery and wondering how we would afford everything for our baby (have you seen the price of diapers these days????), loving watching how my belly was growing with the life growing inside of me and looking forward to wearing clothes without elastic waist bands. I had a great first pregnancy...if I dare say, it was perfect.
On Saturday, April 25, 2009, all of these memories came flooding back to me. Of how badly I wanted a baby, of all of the emotions surrounding my pregnancy, and of how perfect my pregnancy really was. And of how horrific the aftermath became. How devastating it was to have such a great pregnancy only to find out there was something wrong with my baby boy all along. All of those emotions came back, too, as we celebrated Coulby's 5th birthday. If you had told me on April 25, 2004 that my life with my newborn son would consist of a medical vocabulary with Citrullinemia at its root, medications completely foreign to me, scales, a food values book, a daily log of my son's protein and caloric intake, and an unwanted familiarity with Hopkins and its staff, I probably would have looked pretty dazed and confused. And that is exactly how I felt when I was told these things only 4 days after we brought Coulby home from the hospital.
I really did not know what to expect in the years to come, or even if I could expect to have years to come with my son. The doctors at Hopkins gave us little bits of information at a time, and it always seemed that it could not get any worse until they gave us a new piece of information about Coulby's life with Citrullinemia. I think I walked through a daze for most of those days that Coulby spent at Hopkins as a newborn. He laid in a hospital bed hooked up to an IV and wires, wires and more wires when I was supposed to be holding him in the comforts of my home welcoming him into our family. I missed out on all of the newborn stuff with Coulby. That still saddens me, but I look at that time as a blessing, too. Because I can now look back and see how far we have come. How far Coulby has come. How he has grown and thrived and far surpassed what we expected from him as he laid in that hospital bed 5 years ago.
Celebrating Coulby's 5th birthday (and his daddy's 30th!...yes, on the SAME day) is a huge deal because I know where we could be based on what we were initially told about Citrullinemia. Coulby is a miracle. A true blessing. And he has taught me so much in the last 5 years. I see his strength and I hope that I can be that strong. I see his perseverance and I pray that I can overcome obstacles with such grace. I see his drive and I realize we have come full circle. It comes right back to my drive to have a baby; to have Coulby. He is driven in everything that he does in his young life. Honestly, while most people are trying to tame that kind of drive in children these days (like in the school system, as I have found), I encourage it and find ways for Coulby to channel it in positive ways. That does not always make my life easy as a mom, but I figure it will be worth all of the frustrations and hair-pulling moments. It already has been!
So I guess my blog today is to remind myself of how blessed I have been in the last 5 years to have Coulby in my life. I am reminded every day when I see Coulby learning something new, or when he tells me one of his fun make-believe stories (which are becoming more and more elaborate and detailed each day), when I watch him climb the steps of the school bus to go to school. Or when he sneaks into my room in the morning after daddy has gone to work and says, "Hi mommy, can I lay with you?",as he snuggles in beside me. My baby. Even though he is a big 5-year-old now, he will ALWAYS be my baby!
*Oh, and what better way to celebrate Coulby's 5th birthday than with a train cake? And I am not one to brag at all, but I made his cake! I do not take full credit, because I did get some ideas off of the resource of all resources: the Internet. I stayed up until 4:30 a.m. making that cake, and it was worth every second. Coulby loved it!*

Wednesday, April 8, 2009


Our last photo assignment was EMOTIONS, and Caroline gave me lots of photo opportunities to capture multiple emotions. This was by far my favorite, not necessarily because of the picture itself, but more because it captured her.

The photo was taken just minutes after she had woken up to start the day. Guess she was not quite ready to wake up, but she might have heard the morning bustle in our house just enough to be roused awake. I do not like those rude awakenings, either. It is far nicer to wake in my own time. At my own pace. Of course this is rarely the case anymore. I am usually up when Coulby decides he is ready to be up, and I wake up quickly. I digress.

So Caroline woke up tired on this particular day, and it got me to thinking how tired I am. Not physically exhausted, but tired. Tired of this cold weather. Tired of being indoors each and every day. Tired of waiting on Spring. Waiting on the weather to cooperate so I can get my hands in the dirt and plant. I am just tired. This is such a nice time of year, but the weather teases and taunts, with 70 degree days down to 30 degree days, all in the same week. Buds start to pop open, flowers start to bloom, and just when it seems we have made it through the last of the frigid weather, a cool front blasts through. And that ray of light gets dull again until the next warm day.

I know this is the pattern and then, at some point, it will get warm and stay warm, and the waiting will be forgotten as quickly as it settled in. It happens every year. I wait. I get tired of waiting. And then the wait is over. And Caroline's sleepy morning just reminded me of all of that.

Hopefully in the next few weeks I will be posting an entry on how lovely it is to feel the sun on my face and to put some new plants in the ground. Until then, I will wait until I am so tired of waiting that it must mean the debut of warm weather...

Sunday, March 29, 2009


What does it mean to serve and protect? Do any of us really know who have not taken that solemn oath to do so? Other than the families they leave behind every time they walk out the door, only to breath again when they return?
A lifeline for my little man, and so many others like him who live their lives with a UCD. The difference between life and death, health and illness, safety and risk. Take the time to learn about these disorders, if for no other reason but to become aware of something you never even knew was around you.

What does it take to walk the walk? To fill those shoes? Those are some mighty fine feet, my friends, and some shoes that have seen some action!

The latest photo assignment: SAFETY/RISK. I know, kind of a tough one, huh? But it is funny, because the more I thought about it, the more I realized that we live our lives each and every day with both safety and risk. Each and every one of us. It is just that some live with more risk than others, whether because of lifestyle choices, careers or chronic disorders, to name a few. And the chronic disorders and career examples affect my life every day, so they seemed the most obvious choices to use to complete this photo assignment. I did not have to wrack my brain to come up with something to photograph after all...I only needed to represent what I live with every day.
Where would you have pointed your camera if given this assignment?

Monday, March 23, 2009


Our latest photo assignment was MACROS. I was not sure how mine would come out, not having a macro lens, but after taking numerous photos of the same things from many different angles and with different lighting each time, this is what I came up with. The photo above shows some of my beach treasures from our last OBX vacation. I had some really great finds, but one of my favorites was this piece of green sea glass, unlike any I have ever seen or found before. I often wonder where these things come from, ultimately washing up on the shores to be found by someone lucky enough to spot them. And it saddens me that so many people just walk right by, never knowing what they might have found if they had only looked...

As I thought about what I would photograph for this assignment, I remembered this sand dollar that my brother had found at the beach...yes, during the same vacation in which I found the sea glass. It was a vacation full of incredible finds, really, because after 16 years of vacationing in the Outer Banks, we had never found an intact sand dollar or whole conch shells (we filled several grocery bags with conchs of all sizes). I really wanted to capture the beauty of the sand dollar and its incredible detail, including the sand that was still on it. Even without a macro lens, I still think it came out pretty good!

This bottle is so small and delicate, with great color and charm. It was a gift from my husband's late grandmother, and is actually one of my favorite things that I call mine. I am not really sure why, except that it has just spoken to me since I first unwrapped it. I appreciate the hunt for something unique, like this bottle, and the intricate details that make it so special. This photo does not do it justice...I wish I could have captured more of the detail in more clarity.
This was a fun and challenging photo assignment. All of them have really helped me to take better pictures and experiment a little more, with different settings and lighting and perspectives.

Saturday, March 21, 2009

For all the stay-at-home mommies out there...

I stay home with my kids. Because I think it is the best thing that I can do for them. And because I did not want to miss a thing as they grew up and started crawling, walking, talking. Making the decision to be a stay-at-home mom was difficult, because it meant giving up that life outside of the home and a second income. But it is the best decision I have ever made. Not because it is an easy job--in fact, it is the hardest job in the world. Well, in my humble opinion. So I find it comical that people think it must be wonderful to be home all the time. You know, with all that "down time" that I have to do what I want around the house. This is a tribute to all of you stay-at-home moms who know exactly what I am talking about...

I was due April 22, 2004 with Coulby. I was huge by the end of my pregnancy with him...turns out he was a big boy, especially for my 5'4" frame. So I looked huge and felt extremely uncomfortable and was ready to have the baby and move on. Not that I did not love being pregnant, because I actually did, but by the end I had, had it. Plus I had started dilating and was 100% effaced by mid-March, so I thought Coulby was going to make his grand entrance much sooner than my due date. He did not. He was born April 25, 2004. And that is when everything as I knew it changed. Drastically. Not just bringing-a-new-baby-home change, but bringing a new baby WITH a metabolic disorder into our lives. and it was then that I knew I had made the right choice to stay at home with Coulby. I would never have trusted anyone to meet the very specific needs that Coulby has. I would have been a nervous wreck. I was anyway! So this started my journey into stay-at-home motherhood.

That first year threatened to break me--my spirit, my sanity, my sense of self, my name it! Metabolic disorder aside, I went from being an active working woman with a second part-time job while working on my Master's degree, to being a mom. At home. Alone with an infant. Very little socialization. Very little time for me. Very little sleep. Often times it was too much of a hassle to try to go out anywhere. You know, packing up the bottle bag, the diaper bag, loading the baby into the car seat, and carrying all of these things to the car at the same time! (On a good note, this taught me how to carry all of my groceries into the house in ONE trip!) Coulby was a pretty good baby, but he had his moments! And those were the days that my husband would come home from work and would not even have made it to the door before I was handing him a crying baby, as I was crying. Oh, and when I really needed Coulby to nap, so I could get something done or take a nap myself, those were the days when he would hit the crib and scream in protest. I would pick him up again, calm him, go to lay him back in the crib, and the screaming would start again. And so it went: pick up, calm, lay down, screaming baby, repeat. On top of everything else, Coulby did have several hospitalizations in his first year, and we were always worried about him and keeping him healthy. I swore I would not make it through that first year. But I did. And by February 2006, I must have forgotten about all of the stuff with Coulby, because I was pregnant again!

Isn't it funny how we have a baby and then all of that infancy stuff disappears from our minds (sleep deprivation and all of its effects, early mornings, late nights, spit up, the bewitching hours, teething, diapers, drool...) so we can have another baby? I think if people really remembered all of the difficult things about having a baby, they would not go on to have any more children. I think it is the good things, like all of the firsts, and the toothless smiles, and the happy baby giggles, that we remember the most. Because the good things far outweigh the difficult. They make it worth it.

Caroline was due on November 1, 2006, and arrived October 29, 2006. I was amazed at how easy it was to bring her home. We got to experience all of the new baby stuff that we missed out on having Coulby and all of his medical issues. Plus Caroline was like a little dream baby. Quiet, content, just easy. And I had settled in to being a stay-at-home mom, too. I think that made the biggest difference in bringing her home. Coulby had to suffer all of my insecurities of being a new parent, as well as my adjustment to being home.

And now, I absolutely love being a stay-at-home mom. It is the hardest job in the world. Every day is new and unscripted. The day revolves around the kids and their moods and their needs, and some are not always fun. Nap times still do not always go smoothly, and I suck it up and say, "oh well," to any quiet time to myself. I spend much of my days chasing after Coulby to get him to drink formula, or rescuing the cat from the attacking children, or cleaning up Caroline's pencil wall art. There are toys everywhere, cleverly hidden in baskets that get dumped upside down, spilling all of the contents out. I pick up those toys about five times a least. I change poopy diapers (and sometimes they are the ones that make my eyes water), remind Coulby to use the potty before we leave the house (and he STILL has to go right when we get in the car or to a store!), try to squeeze time in to do mountainous piles of laundry, and put the "time-out" chair into use when my little boy pushes the limits (making me long for the days when all he could do was scream). I think in mommy terms now, and have accepted the "mommy brain" as part of the territory. I always say that I will be smart again...some day. I do not get out much and I have not had a "date" with my husband in forever, and i often wonder if I will know myself anymore by the time the kids are both in school all day every day.

But I also laugh. I laugh at my kids and the funny things they come up with. I laugh when Coulby makes up his own songs, or Caroline starts dancing to those songs. And even when she breaks open eggs on our counter or pours salt all over the table or pepper on my bagel and in my coffee. What else can you do but laugh? These kids are funny. They are not wallflowers that say "Yes, ma'am," or sit with their hands folded in their laps, never breaking a rule. They live!

My husband has the glamorous job (or so many people think), so a lot of time when asked what both of us do, I feel the limelight bypass me. And that is okay. Because I know what I do as a mom, and I know how difficult and wonderful and frustrating and fun it can be! Moms make the world go 'round, especially those brave enough to be stay-at-home moms. I applaud you all!!

Thursday, March 12, 2009

FAVORITE THINGS photo assignment...

Some of my favorite things are the first signs of Spring. This ladybug is a small reminder that Spring is on its way...I just hope it comes soon!

Coulby's passion right now is trains! Everything trains! He can find a way to incorporate trains into anything. In fact, his teachers at school say they often have to remind him that he cannot make his letters into train tracks, and that when he draws mommy's face, he should not include a train track that would look interesting, huh? Anyway, his train had to be added into my favorite things assignment. I did edit this photo, but the edited version would not upload. So this is what you get!

Snuggle time with Coulby is one of daddy's favorite things. This photo was obviously somewhat staged, but Coulby had come into our room that morning to lay with his daddy. This is exactly how he positioned sweet. When I asked them to sit still for a photo, they both closed their eyes.

Two of Caroline's favorite things: Books and Elmo!
The "favorite things" photo assignment made me think about all of my favorite things...and the list was endless. But I did not want the whole focus of the assignment to be on me and what I like, so I took a different approach. Everyone has favorites, so I took a photo representative of each of my family member's favorites. It was a fun perspective.

Saturday, February 28, 2009

Happy to be HOME!

Coulby is home! He was discharged from Hopkins yesterday and is happy to be home and reunited with his trains. The discharge orders were to make sure Coulby drinks lots and lots of fluids, and gets as many calories as we can get into him. And of course, he must drink his formula. So far, he has done well drinking his formula, with some resistance, but has been stubborn with eating anything. I do not think it is related to his illness at all--it seems to be driven more by his stubborn streak and need for independence. Coulby wants to be in control and make his own decisions, rather than having someone always telling him what he has to do. Has to eat. Has to drink. Has to get his medications. You get the point. I know this is typical 4-year-old behavior, but I also attribute it to the fact that Coulby has had no control over much in his short life. From the moment of his Citrullinemia diagnosis, most of his decisions have been made for him. Now he gets the chance to control some of that. Frustrating now, but something that will definitely help in his future.
Last night Coulby was reluctant to sleep alone, so he took over my place in my bed and slept with daddy. I slept in the guest bedroom in our basement, but do not plan to make a regular habit of doing so. We just figured that Coulby had a big last two days and needed a little extra TLC upon coming home. He slept through the night (minus the multiple times getting up to go pee), and most importantly, was fever free! I am not sure if I had mentioned earlier that the docs did say that Coulby has an ear infection that might have been contributing to his high fever. He also was/is fighting a virus that has been seen in the hospital and is characteristically accompanied by a fever for 4-5 days in most children affected. Anyone else noticing the potency of the viruses going around this sick season? Nasty bugs that seem to hold on forever! (no, my congestion has not dissipated yet either--it has been over a week now!)
This morning Coulby woke in good spirits with his usual endless supply of energy. I am sure not having a fever has helped in that department. You would never know Coulby just spent time at Hopkins, hooked up to an IV with a temperature alternating between normal and 103! A miracle, my boy! That is all I can say. And while it has not been fun to have Coulby sick with multiple colds and other bugs this winter, I am so amazed at how well he has weathered each one. God is good!
Thank you all for your prayers and continued support through our journey with Citrullinemia. You help us to stay strong when things get tough! Please continue to keep us in your thoughts as we work to get Coulby back on track and eating like a champ again.

Friday, February 27, 2009

My boy

Before I laid down to sleep last night, I talked to my husband, who told me that Coulby's ammonia was at 33 (woo hoo!), but his temp. was back up to 103 (boo!). He was awaiting a dose of Motrin. You would not think it would involve all that much to get a dose of Motrin into a kid with such a high fever, but when you are in the hospital, such a simple thing can take, literally, HOURS! You know, the order has to be written for the Motrin, then has to be sent on to be filled, then it goes through several more hands before it finally makes it into Coulby's mouth. It can be extremely frustrating! Unfortunately, as parents, we have no pull in speeding up the process.

Coulby arrived at Hopkins yesterday morning and did not actually get placed in a room until 7:30pm! I wish someone could tell me what takes so long! Especially when, at 3:30, my husband was told that Coulby would get into a room in an hour and a half. Then, around 4:45, it was that he would be in the room in another hour. No, you do not need a refresher math course-it just does not add up! AND Coulby went 2 hours not being hooked up to the IV fluids! Not good for a metabolic patient with a temp. of 103! Who dropped the ball there?? During all of this, Coulby's formula was supposed to be mixed and ready for him when he arrived at the PCRU (the floor on which he spends his hospitalizations). The orders for the formula had been written up around 4:00. Because things were not running smoothly in the ER (and yes, this is Hopkins we are talking about), the doc did not want anything more to be done for Coulby until he was at the PCRU. He wanted to ensure that things would run more smoothly and be done in a more efficient manner than had been in the ER. Coulby was due to get (2) 3 oz. doses of formula with meds. before bed time. This would make sure that he had some medication on board, since he was not getting them through IV.

So, when Coulby got to the PCRU (at 7:30, remember), there was no sign of Coulby's formula, and still no Motrin. By 8:37pm, Coulby still had not received any formula, and was ready for bed. There would be no way he would get 2 doses in before he fell asleep! I did not know what to do, so I called Coulby's dietitian at home. Not something I normally do. She had to call the PCRU to get them moving and figure out what had happened to Coulby's formula that she had ordered to be mixed. And then, miraculously, they found it! Coulby finally got his Motrin, which did in fact keep the fever down throughout the night. But the disappearing formula was re-mixed and Coulby was given one dose before bed. At least he got some of his medication on board.

The story continues...while in the ER, Coulby had a blood draw, from which they took a sample of blood to be cultured. This would help determine what Coulby was fighting and why he kept getting a fever. The nurses at the PCRU informed my husband that they would be taking a sample of blood to be cultured. Confused, my husband said this had already been done in the ER. There was no record of this! After some confusion, the blood was found--sitting in the ER! It had never been sent to be cultured. After solving yet another mystery, the blood was then sent off to its original destination to be cultured.

If you are confused, you can imagine how confused we have been! There are so many little things that seem to always happen when Coulby is at the hospital, and it is exhausting because we cannot let our guard down for a second! We learned that early on. But I would think that Hopkins, of all places, would have a much more efficient way of running things. As Coulby's dietitian said, they (they=those who dropped the ball with his formula AND kept Coulby off of IV fluids for 2 hours while in the ER!) need to get themselves together because they are compromising Coulby's metabolic health! He cannot afford to be the victim of such dumb mistakes. It really is frightening. The whole situation.

As of this morning, Coulby seemed to be himself, despite the hospitalization and the lack of sleep last night. It is kind of hard to sleep with people coming in and out of the room all night long. But his temp. had started to go back up at 99.1. His ammonia, on the other hand, was at 26! Some good news! The verdict is that Coulby can go home today as long as he can eat and drink AND keep it down. Ideally he will get about half of his normal protein intake. When I got off of the phone, Coulby had finished his formula (although it took him a little while), had several bites of Rice Krispies, and had drank several ounces of milk. Not great, but a start.

I will be heading to the hospital around noon if Coulby needs to stay another night. I am praying that he will find his appetite long enough to be cleared to come home. I think he would be much more comfortable here, surrounded by his family...and of course, his trains!

I am sure he would love any words of encouragement, so feel free to comment! I will pass them along to my little trooper!

Thursday, February 26, 2009

News from Hopkins...

Coulby will be spending the night at the hospital. I knew he was not feeling well from the second that he first woke up this morning just by looking at his face. On the way out the door to head to Hopkins, he was in decent spirits despite a temp. of 101. Coulby was still chatty and walking around and being his cute little self. But the fact that he had a fever again, after just coming off of an illness, bothered me enough to think he needed to have blood drawn and his ammonia checked.

Coulby arrived at the hospital with daddy, waited around for someone to finally draw his blood, and then had to wait some more to get the ammonia results. (Same old Hopkins routine every time.) In the meantime, his temp. had reached 103, so the Motrin clearly was not doing the trick to bring the fever down. They gave him some Tylenol (which, by the way, we NEVER give him because of the potential liver damage it can cause...he does not need anything else going on with his liver!), and that brought his temp. back down to normal after a little while.

While waiting for results of Coulby's ammonia, my nerves started to get the best of me, so when the phone rang and it was my husband calling, my heart started pounding a mile a minute! His ammonia: a grand 45!! I was relieved, to say the least. The doctors were going to let Coulby come home after about 6 hours of being hooked up to IV fluids (to hydrate him and get some calories into his body), and as long as he could eat something and drink his medicated formula. He downed a bag of Fritos, drank his drink, and then proceeded to throw up! A set back for sure.

I know that Coulby had been complaining about his stomach hurting since this morning, although he did not seem sick to his stomach at all. But he is the kind of kid who does not want to eat a thing when he is really not feeling well, and I think the Fritos and formula were just a little too much for his tummy. It was too late, though, because the docs agreed that Coulby should stay for at least the next 24 hours to continue to receive fluids and calories. They worried that we would not be able to get anything into him if he came home. It was a bummer for us, but I know it is what Coulby needs right now.

I will stay home with Caroline tonight while Coulby has his daddy by his side for comfort, and then (Heaven forbid) if he is there for another night, we will switch. It is always a balancing act. And these times can be very stressful, so please say some prayers for everyone, but especially Coulby.

I will be spending my night in a state of partial sleep, waiting for the Hopkins updates from my hubby. And I will be kneeling and praying for my brave boy. The house is definitely way too quiet without him!

Where is Coulby?

My house is quiet this morning. There is no shrieking. No whining. No train whistles or rhythmic "chug, chugs." Caroline is not crying because her big brother is not tormenting her. Because he is not here. He is at Hopkins as I am typing, in the ER, having his blood drawn. And probably getting an IV for hydration and calories.

As you know from previous posts, Coulby was sick last week. He was pretty miserable--stuffed up, fever, loss of appetite, and lack of sleep. We pumped him full of fluids, made sure he did drink his formula to get his meds., and treated him with Motrin to keep his fever down. Coulby made it through the illness, after passing it on to the rest of the family, and seemed to be getting better each day. We kept him out of school all week last week, and by Monday this week, he seemed to be okay to go back. Coulby absolutely loves school, so he was thrilled. And I was thrilled that he was feeling so much better. Asking for food, drinking willingly, and meeting full protein requirements again. I always feel like I can breathe better when Coulby is well.

Then he woke up this morning whimpering and whining. He whines quite often anyway, but something about this whine told me that he was not feeling well again. I felt his forehead, and it seemed like he had a fever again. Out of nowhere! One day he is on the mend, the next day he feels sick and has a fever again! How frustrating! I took his temperature, and sure enough, he had a fever of 100.2. I took it again, thinking maybe I had not gotten it under his arm very well, and I got the same read. I swear I just deflated right there and then.

Daddy seems to be the man of the hour when Coulby is not feeling well, and he managed to get Coulby to settle down a bit and stop crying. He put him in a nice warm shower, which seemed to rejuvenate Coulby, and he even looked better. I paged Coulby's treating geneticist, told her what was happening when she returned my page, and we both agreed that Coulby should be seen, especially with just "getting over" an illness and now having a fever AGAIN! Coulby and daddy headed out to Hopkins. When Coulby left the house, he was bright-eyed and chatty, so I felt good about that. But his head was warm, so I knew he still had a fever. I had hoped the Motrin would have kicked in by then.

So that is where we are now. Coulby just had his blood drawn about 20 minutes ago, and was a champ (as usual!). I am praying that even if Coulby is still sick, or getting sick again, that he will be able to come home and we can help him get well from here. Please say some prayers for Coulby. I will post more as I know more!