Sunday, September 30, 2012

From the Trenches

I write to you today from a dark cold place. The past week has caused me to reevaluate my whole life, and where it shall go. We are back in our home away from home at Children's of Alabama. James David had shunt revision #10 this week. Before this he was doing amazing. Making strides in his eating and social skills. (I've never seen the boy eat so much. I was so ecstatic!) Then, as it often does, everything changed seemingly over night. My happy go lucky and dare I say "normal" two year old turned a complete 180 degrees.
Wednesday, what we thought was a stomach virus turned into the most symptomatic shunt malfunction we've had so far. Surgery went well, but I could see the stress in his neurosurgeon's eyes really just not knowing what to do with the little boy he and his staff (my co-workers) have come to love. Nothing he tries seems to work, and its not his fault. James David's body just doesn't cooperate with his efforts.
Thursday, tiny man perked up and we went home! :)
Friday, 4 am brought more vomiting and lethargy... All morning was spent in the ER with tests run and doctors and nurses swarming. James David had them scared, and that made me terrified. All I could do was hold him. They finally got him stabilized and admitted. They still don't know whats wrong.
Saturday and Sunday, he has his good moments, but he won't take hardly anything PO (by mouth). He's fussy and he sleeps a lot, but he still manages to put a smile on everyone's face. I have finally given in to the fact that a g-tube will be best for him. We are hoping to get it placed tomorrow. Going from a full-time breastfeeding mom when all I could do was feed my son when he was born to having to rely on a machine to supply him with nutrition is one of the hardest decisions I've ever had to make. I grieve the thoughts of cooking dinner for me and my son or being able to treat him with snacks after school. No matter what I try to give him, he just looks at me and says "Mommy, no." and I don't understand this...
I'm worthless right now. I barely eat. I barely sleep. I just stare and cry (and creep on facebook). I've missed all my classes and have fallen way behind in my studies. I just cannot focus. I'm realizing now that Med School is impossible for me, no matter how badly I want it. I love the Brain and CNS so much! I'm so insanely passionate about it! Its amazing and complex and just miraculous. However, I cannot do medicine, and be James David's best mommy. It's not in the cards for me. I'm at my wit's end...

Tuesday, September 4, 2012

Hydro... what? That's something with water right?

September brings a lot of things. It brings fall with cool weather and changing leaves. Classes start back, and it brings college football. But you all don't need me to bring your attention to these things. You're living them with me. One thing you probably don't know is, September is Hydrocephalus Awareness Month. Please don't stop reading here. The love of my life was born with this. It effects our everyday lives, and it could yours one day too.

*DISCLAIMER: I am not a medical professional, nor do I pretend to be. This blog contains information in my own words to help educate my family and friends on my son's condition. For medical advice on hydrocephalus, please seek a neurosurgeon. For more information on hydrocephalus you can explore The Hydrocephalus Association.

What is hydrocephalus? " Hydrocephalus is an abnormal accumulation of fluid—cerebrospinal
fluid, or CSF—within cavities called ventricles inside the brain." Also know at "water head" or "water on the brain". It is commonly treated by the surgical placement of a shunt. (A medical device consisting of 3 parts: the ventricular catheter, a small tube inserted through the brain into one of the ventricles; the reservoir and valve, a hard, small piece placed under the skin on the outside of the skull where the valve regulates the drainage of CSF based on inter-cranial pressure and where neurosurgeons can "tap" the shunt to check the flow of CSF and test for infection; last is the drainage catheter (a peritoneal catheter in James David's case), the longer catheter that drains the CSF from the valve and redirects it to another part of the body where is is reabsorbed. However, shunts are not a "cure", but a mere treatment for hydrocephalus. Shunts can malfunction, and may possibly need to be revised. Another, newer treatment for hydrocephalus is an Endoscopic Third Ventriculostomy (ETV). This is where neurosurgeons place a hole into the bottom of the third ventricle to all CSF to communicate more freely between the ventricles. This as well is not a "cure" for hydrocephalus, and can also fail and need to be revised when the hole in the ventricle grows back together.

Our story: We were aware of James David's hydrocephalus (as his other medical conditions) before he was born. We were told there was almost a 100% chance he would need to be shunted after birth. The days following his birth his head circumference continued to grow...
At five days old our amazing, wonderful neurosurgeon made the decision to shunt James David. We were told of all the risks and benefits of a shunt, and that there was a chance it would one day have to be revised. Little did we know that just a week and 2 days later this would become our reality and send us down a road no one thought we would ever travel. To date we have had 8 more revisions totaling to 9 revisions. My kid is rare ;)  My precious son doesn't play by the rules. He writes his own book. Compared to other kids I've seen in shunt failure, James David barely shows symptoms. He is tricky.
James David's known shunt malfunction symptoms:
  • Insomnia
  • Fussiness
  • Anorexia
  • Swollen spinal closure
  • Head Banging
  • And sometimes, but not always, Swollen, Full fontanel.  
 Hydrocephalus effects our everyday lives. Every headache, tempertanturm, spit up, anything constitutes panic on my part. However, it does not slow my tiny man down. Other than slightly delaying his speech, my little man is showing no side effects of his condition. He is still the smart, funny, determined, little man he has always been. We hope to bring light to this condition. How common it is. How it effects those with it. And to help support research for a CURE.

Wednesday, August 29, 2012

Things on my mind...

A few thoughts for the night...

Because I love Will Smith, and he speaks some serious truth.
the sandlot
James David watched this movie for the first time tonight, and he LOVED it. Now if I could get him to poop, my night would be complete :)

Tuesday, August 28, 2012

Normal? Yea, right...

Normal: adjective; conforming to the standard or the common type; usual; not abnormal; regular; natural.

This was some of my notes from chemistry today:
I really despise how lonely I am. I'm friendly. I really am, but for some reason I must seem unapproachable. I have nothing to talk about with my peers. I haven't seen the latest movies or been to the social functions. My life is filled with bills and baby and doctors and responsibility. How can I talk about something I don't know? When my mind wanders past my daily tasks, I find it in foreign countries amongst the poverous, or down alleys and city streets. I don't aspire to see France or the extravagant places of the world, but instead the pits and scum. I find beauty in mere human life. I see it in the eyes of an 8 year old girl raising her five younger siblings, while her mother prostitutes to feed them. I see beauty in pure human life, and that's all I wish to continue to see.
Yep, I'm weird, abnormal, odd, queer, unusual, and whatever other synonym you can come up with. This writing was provoked by the thoughts coursing through my brain when people chose not to sit next to me in class. Why? I've always been different than my peers, and I've never really understood why. I did today. I've lived more. I have depth. I've seen things, experienced things that my classmates can't even fathom. I don't understand how to communicate with them, nor them with me. Shallow casual conversation just isn't in me. I can't change who I am, and I don't want to. I'm going to change the world one day (not arrogance, just fact). They aspire to be the biggest hit at the next frat party, and I aspire to provide clean water for Sub-Saharan countries.

The hardest part comes when I'm thinking about my future. School and the here and now, I can handle being a little lonely. But will I find love? How do you love a woman who has a disabled child, and wants to go to Med School, and then wants to travel the world and take care of poor people? I want someone who hurts for them like I do. Who is willing to chase the stars with me? If I decide to be a rich state-side neurosurgeon, or a Tanzanian orphanage director, or a Humanitarian aid worker, or whatever I do. Serious stuff, right? Yea... welcome to my mind :)

I'm weird, World. Period. I spend my days taking care of James David where my two main questions are did he eat today, and did he poop today? I like reading, and Will Smith, and Star Wars, and museums. My dream job is cutting at peoples brains in a third world country. I know I'm odd, but its what makes me me and I love me. :)

Monday, August 27, 2012


The newest decoration in my apartment.
Single-mommydom: The place in which all single mothers live. The one where you sacrifice all for your child. Where you cook and clean and bathe and play and read and tuck in 24/7. Where at the end of everyday your hair is always a mess and your clothes are stained and you smell slightly off. But despite all the adversity, you get to experience all the love and adventure that makes it all more than worth while :)
Today is James David's 2nd birthday! However, you would not have known it by the way today went. It did not start with a delicious chocolate chip pancake breakfast, but to a mom rushing out the door because she's running late, and trying to force her tiny man to drink his pediasure. There was no day to spend together. No hoorah at the zoo, or anything else spectacular in little boy world. Instead, little man went to school where he got to be the line leader all day! :) Mommy went to school, and then to work. I battled insane traffic and picked up a very tired little man (apparently little boys don't nap on their birthday). He slept on the way home. Then we opened up all his birthday toys! My living room has been transformed. We set up tents, and railroad tracks, and barns. My apartment has been turned into little boy world. After not eating dinner, (if you've been keeping track that comes to a big ole total of NOTHING that he's eaten today) we settled down to go "Night Night". I had it in my mind that I would tuck him in, and tell him all about how he came into the world. A special journey for a special little boy. How perfect God created him. However, after an hour of hysteria, and vomiting three times, I found myself curled up in a firetruck bed with my little man, his sleepy little face finally resting. Its moments like those that are my saving grace.
I realized in that moment, staring down at my son as I have so many nights since he was born, and felt nothing but unconditional love. I knew that although my day wasn't perfect, or as adventurous and fairytale as I would have wanted it to be, it was MINE. I know that one day James David will be proud of him mommy for following her dreams. One day I will give him something that will top all the chocolate chip pancakes and zoo trips he could imagine. So Happy Birthday James David. Mommy loves you more than you know.

Monday, April 30, 2012

Pleasantly Placid

Placid: pleasantly calm or peaceful; unruffled; tranquil; serenely quiet or undisturbed

These last few days have been truly amazing. I have seen a side of my son that I have not seen in a very long time, and, quite frankly, was afraid I had lost. Not only has he become a connoisseur of all foods, he has become a master at sign language. My son is pure genius. I'm certain of it (as every mother is :)) Last Friday James David's daycare borrowed a ZipZac and put him in it. He took right to it. He enjoyed being able to get around without having to be face down all the time. He was so excited that he was giggling and dancing and kicking his legs all around. He was absolutely precious. The only thing right now that we are having issues with is poopy. Every night he poopies in the bathtub. He loves his bath. He just cannot understand why I have to drain the water and make him take a shower with me. He's so upset and its just something he can't control. But hey, if that's my only little-man complaint right now, I would say things are going pretty stinking well. 

On the mommy front, however, things are not so peachy. I'm having quite a bit of trouble trying to find a new job. Right now I'm spending more money than I make. That is no bueno. I've been doubting My car started making a terrible,  awful noise on Thursday. The moment I heard it, my heart sank. It ended up being over $700 in repairs. Mommy just can't catch a break. The only thing really keeping me going is the man sitting next to me. Without Jonathon, I would crumble. I love him more than I think I even know. 

An exciting note, Guess who's going to Chicago to meet some family?? This girl! That's right, after much ado, I am finally going to be meeting some of my beloved's family. My mind is all a flutter with emotions about this. What if they don't like me? What if they do like me? Will this just be another family I fall in love with only to have them torn from me at a moments notice? Or will the be the family I become a part of? The ones I will spend countless Thanksgivings and other holidays with? Who knows... but it will be a memorable experience. That is one thing I am certain of. :) 

For now, I'm just taking it day by day. Even more so, minute by minute. My days are full of ups and downs. One minute I'm worrying about money, and the next I'm staring into the eyes of one of the two men I love feeling nothing but bliss in this world of trials. There's nothing more I can do than to live in the moment. I'm just rolling with the thunder. 

Thursday, April 19, 2012


Motherhood:the state of being a mother. (Although this is a very blatantly obvious definition, it is suitable, because you can't descride being a mother, you just have to be one. )

Do you ever have those days where you just don't feel like going on? You feel as if your whole world is crumbling around you, and you panic. You're chest tightens, you can't breathe, and you just want to huddle into a little ball until you disappear. To just cry and cry and cry until you can't anymore. Today was one of those days. And then it wasn''t.

Everything was wrong today. I won't even go into detail. Then something amazing happened. A little boy brightened my fear ridden world. The moment I walked into daycare and his blue eyes locked on me, I froze. He opened his sweet little mouth and melted my heart with just the simple word, "HEY!"

Today we played in the floor together, and read books. He ate like a starving child. Since he's started eating he has so much more energy. We crawled around and played "Monster Baby". (A game where James David growls at me and I shriek in "utter terror."). There was the ever eventful bathtime. Full of splashes and more Monster Baby. After bathtime was mommy's favorite time. He took his meds like a big boy and we had snuggle time. He drank his sippy cup in my lap and gave me hugs and kisses and loves. He is the sweetest little snuggle bug. And then it was bed time. :)

It amazes ,me how I can love one little boy so much. He has no idea how much he means to me. How much he affects my evryday. I will never be able to thank him enough for the whole new world he has opened to me. The marvelous wold of motherhood.

Wednesday, April 11, 2012


Just a reminder: This blog is more of my journal. I keep it so that people will know whats going on in our lives and to help me vent. Please read, digest, enjoy, whatever... but do not comment. If you have something you feel you MUST say, send it to me in a private message and I'll be happy to read it.

Adversity: (n) adverse  fortune or fate; a condition marked by misfortune,calamity, or distress:

Easter weekend was pretty bring around our home. I worked most of the weekend, and the rest of it was spent going back and forth between family members houses doing the same ole mundane things. James David has a new word, "toes". That was pretty exciting. We also discovered he has pretty much no interest in chocolate (like most other things edible, with the exception of cheese.)

Sunday evening I noticed a little knot behind James David's right ear. He did not like it when I touched it! I gave it a few days assuming it was probably a swollen lymph node. Over the course of Monday and Tuesday he became very snuggly and would just lay on my chest and watch TV when we were home. They said he was doing very good in school, though. So, with the knot still behind his ear yesterday afternoon, I took him to his pediatrician.

As I assumed, it was a swollen lymph node, but his white blood count is normal, indicating no sign of infection. It's probably just his body reacting to his surgery a few weeks ago, and should go away in time. YAY! I like getting good news. :) Unfortunately, the good news was followed with not so good news. James David has lost another pound. This puts his total loss at 1 1/2 lbs in the last 6 months. At 19 1/2 months old my son only weighs 16 lbs and 5 oz. He is plummeting off the charts. He was given an antihistamine that is known to help increase appetite, since he is already drinking 3 Pediasure a day. We also have an appointment to see a nutritionist and scores of blood work to have done. There's talk of a feeding tube. On a worse note, I also noticed that James David's head looked "normal" yesterday instead of its regular concave shape in the front. Meaning his fontanel was fuller. Meaning that his shunt was not draining as well as it needed to be, hence the snuggly-ness and spacy-ness. It was better this morning, but it tends to fluctuate. I'll be keeping an extremely close eye on that like always.

After the days events we went home and did one of James David's favorite things in the whole wide world. He took a bath. We played and played with his new bath boat and sailor. Laughing and splashing and having the time of his life. Just him and mommy. As I played with my son, seeing his slightly swollen head (occasionally keeping him from laying down in the water), counting his ribs as he crawls around the bath tub, I just looked at him in amazement. Despite his adversity he is still having a marvelous time just playing.

 I looked at him and was taken back to the ultrasound room at UAB's Maternal Fetal Medicine clinic. Where they told me about Spina Bifida. All those appointments where they switched their stories from he would only live a few hours to telling me how non-severe his case was. Which they were right, his legs function is phenomenal. But what they didn't see coming was his Hydrocephalus. Sure they knew he would need a shunt, but I remember being told how rare multiple revisions were and that statistically my son should be A-OK. Eight shunt revisions later I just want to look at those doctors and be like, "What the hell?" Nobody could have saw this coming though.

Its times like these I just want to take my son and run far, far away. Protect him. Take him somewhere and start over, but that is foolish because no matter where I take him, his health will remain the same. I want to scream and break things I get so angry. Why can't he just be allowed to be happy and healthy for more than a few minutes? I want to crawl up and cry. Sob. Scream. But none of these things will fix anything. If I breakdown, I don't know if I'll be able to get back up. So I keep my big girl pants on. I work two jobs and put off cooking and cleaning and anything else I can to spend a much time possible (as little as it seems) with my son, because deep in the back of my mind I wonder how long I truly have. I'm bracing for the new doctors and the new tests and I'll take whatever is thrown my way in stride. It's part of life. No matter how much we dislike the rain, we need it to grow, and that's where the love comes in.

Tuesday, April 3, 2012


1. something or someone belonging to or associated with me

Today I dealt with selfishness at its finest. It all started when I slept in. It was great, but so not worth the rush. So after dropping James David at daycare and speeding and aggressively driving all the way across the state (or at least it felt that far), I groggily stepped out of my Sebring, and begrudgingly headed into one of my least favorite places in the world, Blount County Courthouse. 
My parents filed for divorce September 2009, and everything still isn't settled. I have watched the people who raised me turn into children all over again. The very people I thought I knew, who I have known since birth, I no longer know. So instead of working my marvelous job, I sat in the courthouse waiting and waiting to testify about who is the best parent, who did what to the carpet, and who does the washer really belong to? That time never came. After 6 1/2 hours of waiting, they issued a continuance. So I get to spend another long day, with no pay, back in my favorite place in July! yay...
James David has a new favorite word. Replacing the word "shoe" is, you guessed it, "MINE!" Everything is "mine". The teddy, the shoes, the remotes, me. Everything except his supper. My stubborn little boy got force-fed yogurt for supper tonight. That was the highlight of my day. HA!

So now as the night winds down, and I sit here to reflect on the day, I think about the immaturity of the day. So many people, young and old, fighting for things that are "mine". Yet, I can't help but think about all the things that truly are mine, and be grateful for them. I am truly blessed to have a home, food, family, and love. (See I'm not all negative ;))

Monday, April 2, 2012


Realization: (verb)
1. to become conscious or aware of (something)

Today I had a realization. I was standing in the hot kitchen at work talking about James David with a coworker. He's had surgery recently and a brief battle with constipation. Because of these he has lost some weight, and he is already very under weight for his age. Describing to her how I can count his ribs, how no matter how hard I try he won't eat most of the time, how I'm not sure what will come next (a feeding tube?), she looked at me with the most serious look on her face. Her eyes locked with mine and she simply asked, "How do you do it?" In that moment, I felt as if someone could really see me. The sounds of the noisy kitchen around me silenced and all was still. She made me think, and I replied honestly to her, "I have no idea." I really don't. I just wanted to cry. This chick got it. At that moment I felt her, and she felt me. Day to day is a struggle, a blessing, an adventure, a mystery, a life all rolled into one.

I feel like no body really sees me. That's why I chose to write this blog. Refreshing it. A brief look everyday into our lives. I don't want comments. Message me privately if you must. But no more being transparent. Today I realized that I am much more than most see. I'm more than the struggling mom at Ruby Tuesday. There are words and thoughts inside me dying to get out. So here they are! :)