Germs, BE GONE!!

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

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

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

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

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

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

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

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 want...you 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!

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...