Ode To Valentine's Day

The most important things are the hardest to say, because words diminish them. ~Stephen King

How can a day symbolize love? Do chocolates and cards adorned with hearts and flowers and jewelry and lingerie encompass what love is all about? Red and pink are the colors of love? Valentine's Day confuses me. There is nothing in this world that can possibly say enough, cost enough or be enough to convey "I love you" from one person to another. You do not have to agree. This is strictly my opinion, after all.

I have not always felt "Bah humbuggy" about Valentine's Day...the day of love. My husband proposed to me on Valentine's Day way back when. He has given me flowers, taken me out for a nice dinner, given me gifts and cards and stuff like that in the past too. And I have liked it all. But now I kind of see it as a commercial holiday where people almost feel obligated to buy something that says "I love you." I prefer a homemade card with non-Hallmark sentiments written inside. Once my husband (then my boyfriend) made me a bowl of strawberries...he cut each slice into a heart shape. Each slice! Do you know that I would take that over jewelry any day? And when we were in high school he made me this heart in ceramics class and filled it with wax to make me a candle. Those are the Valentine's Day gifts that hold the most meaning for me. They need no words. Words would diminish their meaning.

For all of the hopeless romantics out there, celebrate on! Valentine's Day can be fun. I am just saying that there is more to it than its superficiality. Sometimes it really is better to say nothing at all.

Winter Wonderland

Winter induces that comatose-like state only achieved after self indulgence. You know, that feeling you get after you leave an all-you-can-eat restaurant? Or right after Thanksgiving dinner? Yeah, you know it. That slow, sluggish, lazy state of being. And I hate that feeling! I like to be busy and move around and feel productive. By the time the first daffodils start peeking through the ground and the first buds begin appearing on trees, I am in danger of losing my sanity after spending a long Winter indoors. Okay, okay, a little dramatic, I know. Let me just put it on record that I am not a big fan of Winter. Too cold. Too many layers of clothing. Kinda dreary. Short days. Chapped lips. Dry skin. Cabin fever. The whammy: too many germs! I would not say that I hate Winter, but I.DO.NOT.LIKE.IT!

With the huge blast of Winter weather that has so graciously dumped mid-thigh-high snow (yes, I am short!) across Maryland, the comatose state has graduated to delirium. The kids have been cooped up in the house for days on end...hence the delirium. I have cleaned up the same toys about a million times. I have broken up the same fight about two million. I have bundled and unbundled each kid in layers of snow clothes I do not even know how many times now. I have watched 'The Incredibles' the whole way through about 2 times a day. I hear shrieks and cries and squeals and "Mommmmyyyy!" in my sleep. I am edgy and jumpy and irritable and wound up tighter than Coulby's bongo. And at the same time, I am also finding humor in it all. Because at a certain point, everything becomes humorous. I have to laugh...that or I will cry!

How many days are there until the official calendar start of Spring? Of course I do know that it does not mean all of the cold weather magically dissipates on March 20, but at least it is Spring. But since there is still snow on the ground, and snow falling from the sky as I type, I did break out the camera and my new macro lens (thanks, dad!) to try to capture the anatomy of a snowflake. So far no luck. Have you ever really studied a snowflake? Caught one on your sleeve and looked at its pattern? I would love to have that permanently frozen in a photo.

So now that I have professed my undying love for snow and Winter and cold (ha), I should emphasize that Coulby is healthy and home to enjoy the snow. Ultimately, no matter the weather, that is the most important thing. I complain, but I am also celebrating that I am stuck at home watching the snow come down rather than having to watch it from a permanently-stuck-shut hospital room window. I will gladly trade productivity for laziness; my sanity for delirium. If it means all of my family is home, happy and healthy, bring it on!

Getting into the Groove...

...literally and figuratively speaking! My blog has kind of fallen by the wayside lately. Giving in to being lazy and putting it off are the only excuses I have for my lag between posts. But here I am! Back again! And really, I do not have anything new and exciting to report...which is always good in our UCD life. I like it boring. I like it monotonous. I like saying, "Nothing," when someone asks what is new. It means Coulby is healthy, stable and, most importantly, home.

Coulby is having a great Winter (knock on wood!). While he has brought home colds and nasty viruses accompanied by fever, and one VERY persistent virus that he so graciously passed on to all of us, he has been metabolically stable. *Celebrate!*

Coulby's last several Hopkins appointments have gone well and yielded nice, low ammonias and fairly stable amino acids. A few minor adjustments to his diet and medication and he has been good to go. We have been managing to get all required protein and calories into him each day without too much of a struggle. Because we increased the one medication a little bit, Coulby can really taste more medication than formula now, and lets us know it. He will very firmly tell us, "I hate my formula because it tastes nasty!" It makes me feel badly because I know how awful it is, and I do not want to give him something so gross, but he has to have it. There is nothing I can do but tell him that I am sorry he has to drink it, but it keeps him healthy and home. Coulby seems to get that.

Coulby is doing well in Kindergarten, although he has a VERY short attention span and LOTS of energy. It makes it difficult for him to complete every task and stay focused. He loves going to school though. He is disappointed on the weekends when he asks if it is a school day and I say no. I get the, "Ohhhh, nuts!" A Coulbyism. I like that he is excited about school...how long will that excitement last? I do not think he will be getting on the bus to go to high school so happily and willingly.

So things here have been fairly quiet...not literally. Two kids can make a lot more noise than I ever imagined. Especially a brother and sister quarrelling! We have more and more of that in our house. I feel like I should be wearing black and white with a whistle around my neck! But when Coulby and Caroline play well together, it is so much fun to watch and hear. Their make-believe worlds sound like a great escape from reality.

Now that I am back in the world of blogging, I am going to make it a point to post more regularly. (Do you hear that, Mindy?) My main goal behind establishing my blog was to educate those unfamiliar with UCDs. To raise an awareness by telling Coulby's story. And I still believe in that. So look for more posts soon. Until then...

'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...

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.