Friday, September 30, 2011

Today is Children's Growth Awareness Day!

Today is Children's Growth Awareness Day. It's not the most popular day, not on any calendar you buy, there's no specific colors to wear, promotional sale at your favorite store or traditional family gathering to celebrate the day. Children grow, right? It's not something you wonder about or worry about when you are trying to conceive or carrying a child to term. "We're hoping for a boy. We want a girl. As long as the baby is healthy we don't care if it's a girl or a boy." These are the things you hear from pregnant couples. But what about when the baby is not healthy, what about when the fetus isn't growing right? No, children's growth is not something you think about, unless that is, you have the child that doesn't grow or grows too much and too early.

In our case, we have the child that doesn't grow. Well she grows, but not like that of what is normal for a child. This isn't something that we are just realizing, we learned there were problems early in our pregnancy. Like all the unexpected, you are hit when you least expect it... thus the term "unexpected"...I always seem to forget that part. Our unexpected came during an early ultrasound when the ultrasound technician calls my doctor into the room. That, by the way, is never a good sign. Well, I have never considered myself "normal" or that of a person who fits into a mold, but apparently my pregnancy wasn't normal either. My placenta was much too big and the baby much too much for Goldilocks finding what is just right. So after second opinions and doctors' visits back and forth in town and with specialists in Birmingham, I had what you call a "high risk pregnancy" complete with bedrest and biweekly doctor's appointments to closely monitor the growth and development of the child within me.

My placenta was way too big, you would think that would be a good thing...more to give the baby nourishment, right? But no, only a small portion of it was working to nourish and feed my baby girl. The rest of my placenta was nothing but dead tissue which threatens our pregnancy with the question of if and when it might quit working completely. On top of a clearly defective placenta, the umbilical cord delivering the all too important life to my child is missing a vessel. That would be a "double whammy" in the game show world which gave us 50/50 odds through our entire pregnancy of "if" my child would survive to birth or after and what kinds of problems she would have if she even "made it" at all.   

Well she made it to 33 weeks when the she was delivered by cecarean section. No, I never went into labor, she was delivered after she had quit growing for over a month within me. The c-section was to save her from the womb that was supposed to protect her. A decision was made that modern medicine could nourish her better in a nursery than in my body...Thank you Modern Medicine!

August 13, 2001 my McKenzie was born at 33 weeks, yet was the size of a 24 week baby, at 1 pound 8 ounces and 12 1/4 inches. Unlike most moms' deliveries, mine was a scary one in an operating room with a doctor and a few attendants for me and a team, yes a team, of doctors and attendants waiting to assist my child with whatever complications she may have upon birth. My small, breech baby was pulled from my medicinally paralyzed body and wisked away to a room beside us while we waited and prayed to hear a newborn cry. Finally, it was heard and simutaneously, tears escaped our eyes. My baby was brought to my side for a quick glimpse of a beyond small body wrapped up in a blanket with big bulging eyes. I didn't get to hold her, I didn't get to touch her...I got a quick glimpse before she was rushed to the Newborn Intensive Care Unit (NICU). 

McKenzie was not just a premie, but a micro-premie and would spend 67 days in the NICU. Growing in a plastic bubble of a isolette with air quality and tempurature control, bilirubin lights and wires monitoring every vital function. The NICU came with daily weigh-ins, oxygen, feeding tubes and a glossary of new terms that only doctors, nurses and parents of NICU children know. My daughter spent 67 days there of which I spent 6 nights at home and the other 60 nights at the Ronald McDonald House and then at a nearby aunt's home whle each day sitting next to her isolette and having to ask permission to briefly hold my daughter.

We brought her home that 67th day in premie-sized blue dress that was much to big for her 3 pound 13 ounce body. She weighed 13 pounds on her first birthday, and while most premies "catch up" by the time they are two, our McKenzie didn't. McKenzie is now ten and I am asked countless times if her and her seven year old sister are twins because she is still so small for her age. In the past ten years, there has been early intervention with occupational therapy, physical therapy and speech therapy. There have been countless x-rays for bone age and skeletal surveys and visits to her pediatrician, geneticist, endocrinologist, gastroenterologist, ENT, cardiologists and opthomologists to monitor, assess and treat her growth and development. She has had 5 years of growth hormone injections six days a week, 3 ear surgeries and an oral surgery. She has had her records sent to doctors in New York, France and England with a few growth disorder diagnoses given, researched and taken away. We have even traveled to Chicago to see a specialist of one diagnosis, only to tell us that wasn't it either.

So we still do not have a diagnosis, but we continue to monitor, research and follow up. It's not that we have to have a "diagnosis", a name to call her growth disorder, but when you know what you are dealing with, you know what to expect. You know to expect scoliosis at 5 years old, or that the growth hormone shots will not increase her growth any more than her not having them, or what may be around the corner for her as she matures. Many children with growth disorders have problems in puberty and medical problems that don't show up until they are adults. It would be nice to know what we may be looking forward to, but at this point we will just get the unexpected when we least expect it. 

We know that we are blessed beyond measure. There are many parents that don't hear the first cry in the delivery room, there are many that never bring their baby home from the NICU and there are far more worse problems that not growing well. There is nothing wrong with being "small", "petite" or "little" and in no way with mine and my husband's heights would we expect our child to be six feet tall. At her growth rate now, we are looking at McKenzie reaching somewhere in the four foot range, which is fine with us, but does come with it's own challenges which she will continue to overcome as she ages.

I'm a different kind of parent because of McKenzie and the medical history she has had. I have her growth chart in my wallet for whenever a doctor would like to see it, meals have always been accompanied with pleading and bribery to get her to eat more, I never stop my child from indulging in fatty foods and treats, I can take in any pair of pants with just a few stiches of thread or a couple of safety pins. I get irritated when other people treat my ten year old like a baby, when other children her age pick her up like a baby and I get tired of having to justify that my child is in-fact ten years old. I use the internet to research terms like wormian bones, blue scelera, idiopathic short stature, small for gestational age, inter-uterine growth retardation, double vessel cord, abnormal placenta, tongue tie, dwarfism and all the disorders that are related to them. I can see "syndromic features" on other children and wonder if their parent has a doctor that has recognized and educated them and I can relate, sympathize and empathize with the mother who has found out she doesn't have the "normal" pregnancy. I am the parent who will ask countless questions at doctors appointments and has learned that we as parents are our child's only advocate. I am the parent who will repost the Magic Foundation's Children's Growth Awareness Day poster on my facebook wall and my blog because I know that growth has less to do with a measurement and more to do with a child's health.


Tuesday, September 27, 2011

A Stick, Some Thread and a Dead Bug

A Stick.
My 7 year old, always full of drama and creativity, brought a stick into the house. Bringing a stick indoors in nothing new, as I am used to finding rocks, leaves and sticks because there's always a collection being made for some unknown reason to me. After emptying countless rocks from both of my girls' pockets collected from their previous school's playground, I assessed that I really did owe the school a couple of bags of rocks...though I never did follow through with delivering any. Unlike the smaller sticks I am used to finding though, this new addition was about 4 foot long and I thought nothing about throwing it out the door back outside. Later, the stick mysteriously returned inside the house. I picked it up and as I began to repeat my actions from earlier in the day, I was stopped with the "Mom" whose tone draws into two syllables to let me know that what I'm doing is not appreciated. "I'm gonna make a fishing pole out of that" she says. Great, a fishing pole, that's exactly what I want to trip over, or have the dogs get a hold of in the house and chew into a mess of splintered pieces on the floor. I hand her the "fishing pole" and hope this little craft project is forgotten soon so I can throw away the stick once more.

Some Thread.
Later, my daughter is in the trunk which doubles as a coffee table and houses my sewing notions. It's not uncommon for her, or anyone in my house to be rifling through here as it's the one place you can usually find scissors when the household ones are missing from their supposed home. Which explains why I believe at this point I have no sewing scissors left either. I ask her what she is doing and she respond that she needs thread for her fishing pole. A piece is cut and I realize that the craft project is still underway and not forgotten. Later the stick emerges with tread tied to one end and my daughter curiously wondering what she will use for a hook.

A Dead Bug.
Well, I haven't seen or tripped over a stick in a few days and I had seemed to forget about the stick and the fishing pole until it re-emerged from it's hiding place to go on the river with us on Nana and Papa's boat this past Sunday. But now, along side the fishing pole which is propped up against the kitchen counter is a ziplock baggy with a large dead bug in it. What is this for? Well, bait, of course!

We head down to Nana and Papa's with our bathing suits and of course a fishing pole in my daughter's hand which in fear of Papa, she leaves outside of their house. We pack up for a day on the river and head out of the house to the boat, but the fishing pole has vanished from where she had propped it up. Well, unfortunately Papa did not realize it was a fishing pole, he thought it was only a stick, and had carried it down to the garage to later take to the brush pile. Once again, my daughter retrieves her fishing pole and heads to the boat with it and the baggy with a dead bug.

By now the thread is tangled, but it has a "hook" made with a toothpick broken into shape and taped on with clear scotch tape. I can't get the thread untangled, despite her most desperate plea. Nor can I figure out how we are gonna put the dead bug on a toothpick covered in scotch tape. I open the baggy to release the dead bug, whose time in the bag is unknown to me, but is obviously a long time due to the stench of it. Holding my breath I give up and tell her I have no idea how to get the bug on the hook. My only advice to her is to throw the bug in the water and let the fish come to it where she can use the fishing pole to hook the fish. Everyone agreed as no one wants to deal with the nasty smelling bug or the fictitious fishing pole any more.  She throws the bug in the water and stands at the side of the boat holding a stick with a piece of thread tied to it and a scotch taped toothpick dangling in the water.

She's not serious, right? She does know this won't work, right? Right, she knows...she's pretending. I sit there watching her and smile at the creative imagination of my child. She knows it won't work, but when reality fails her, imagination triumphs. I am suddenly ashamed. I tried to throw away my child's imagination, I wanted her to forget about her imagination and my dad tried to move her imagination...all without realizing we were doing it. And I wondered, if that was what happened to my own childhood imagination. The imagination that had an imaginary friend named "Yellow" who lived in the woodpile behind my house growing up. The imagination that spent summer days perfectly content sitting in the branches of a pear tree for countless hours. The imagination that would color the side of a box with blue waves, sit in my boat in the living room floor watching tv and staying out of the shark infested waters of the carpet beneath. What happened to that imagination? Did it get forgotten, hidden, moved, or thrown away like we tried to do my own daughter's fishing pole? Was it time, disappointments, growing up or the seriousness of adulthood that squashed the imagination? It's probably a culmination of all those things, and lets face it, we can't play pretend all the time. Talking to an imaginary friend now would probably get me some serious anti-psychotic medication and a padded room, climbing a tree would give me bruises and maybe a broken bone or two and sitting in a colored box in the living room won't pay the bills. But I am thankful that through my child's creativity, I can remember my own and maybe it will help me to not quash her creative imagination with every stick, rock or leaf I find laying around the house. It's funny how while we raise our children they can remind us who we once were and had forgotten. It's funny just how much you can learn from a stick, some thread and a dead bug.

Monday, September 26, 2011

Breast Cancer Awareness Month

Breast Cancer Awareness Month is in October, but when you are waiting on results from tests on a lump in your own breast, awareness is everyday. No matter how many times you tell yourself "it's probably nothing," and try not to focus on the unexpected "pebble" that was thrown into my pond on Wednesday of last week, reminders are everywhere redirecting my mind back to the unknown. Today is Monday, day 6 of my "lump in my breast awareness week", and in the past 5 days there have been reminders of breast cancer everywhere:

It's in the table set up at a local event by a boutique specializing in bras and accessories for women who have had breast cancer, lumpectomies and mastectomies.

It's when I'm getting ready one morning and CMT plays Martina McBride's video "I'm gonna love you through it."

It's when a car pulls in front of me on our main roadway and the license plate is a personalized breast cancer awareness tag with the pink ribbon logo on it.

It's every time I see my husband reach to scratch his arm, because that's what he does when he is worried about something.

It's in the check out line at Winn Dixie where they have new, bright pink, eco-friendly, reusable breast cancer awareness shopping bags ready for purchase.

It's in the intricate design of a silk head wrap on a woman as I wonder if she is wearing it to cover the side effect of chemotherapy. 

It's in the child passing by me at the youth football game wearing last year's bright pink cheer leading t-shirt with "Go Fight Cancer" on the back.

It's when I am folding clothes from the laundry and putting bras away in my dresser.

It's while wearing a bathing suit, on the river, on a beautiful Sunday afternoon.

It's when I am putting away the contents of the pink tote given to me at the mammography office.

It's in every pink ribbon and every cancer commercial on tv.

It's everywhere. 

And then this morning my husband calls me at work when he receives the report in the mail for me..."Believed to be benign (not cancer)" are the words he reads and instant relief comes over me. These are the words I was waiting to hear. Though I would have gladly taken a "Confirmed benign," "Definitely benign" or "Positively benign" instead of "Believed to be benign," I am guessing for legal and liability reasons the report has to always leave an opening for error. As for now, I will take "believed to be benign" to settle my my mind until my next mammogram recommended in 6 months. We now have all the measurements and details of my "pebble" on file which will be closely watched from this point on. 

As I was also told I have fibrocystic breast disease in my appointment last week, which is not uncommon, this will probably not be the only "pebble" I will have to deal with. There will be plenty of mammograms in my future and with them will probably be many more days of waiting for results afterwards. I hope the waiting will be easier and the results always as favorable. 

But as my "breast cancer awareness week" comes to a close I can't help think that even as I type this:

Someone just found a lump in their breast
Someone is having a mammogram
Someone is having an ultrasound
Someone is waiting for results
Someone is being told it is cancer
Someone is telling her family she has cancer
Someone is having chemotherapy
Someone is having radiation
Someone is having a lumpectomy
Someone is having a mastectomy
Someone is looking at a surgical scar
Someone is sick from the side effects
Someone is wrapping her head with intricate designed silk
Someone is dying because a pebble was found in her breast
Someone is crying because breast cancer killed their mother, grandmother, sister, daughter, aunt, niece, friend...
Someone is grieving because they are in the ripple of a pebble that was thrown into their pond and changed their life.

For Someone, Breast Cancer Awareness is EVERYDAY... and today, my prayer is for her and all those around her that are caught in the ripple effect caused by a pebble being thrown into her pond.

Saturday, September 24, 2011

The Pebble

Not Expecting...
Wednesday morning I walk into the doctor's office and survey the waiting room of mostly couples: women with robust bellies sitting with men, most of which look like they would rather be anywhere but here. I sign in feeling quite happy that unlike the others here, I am only at the ob-gyn's this morning for a routine yearly exam and am not one of the pregnant women here. As I wait, I reminisce on when I was the pregnant one in the waiting room. How in my first pregnancy, one that was very complicated, I was always nervous in the waiting room anticipating what news of my baby's growth and development I would receive in that visit. I remember sitting in the waiting room the dreadful morning of my second pregnancy hoping that the doctor would tell me the bleeding that morning wasn't my worst fear. In my third pregnancy, I would pray in the waiting room that I wouldn't get any news that this perfect pregnancy would be complicated like the first or lost like the second. For my pregnancies, the waiting room was a scary was the calm before the storm.  But today I was only here for a routine exam. Today I was relaxed in the waiting room knowing that I would be out of here in a few minutes and on my way to work. Today I forgot that the unexpected happens when you least expect it.

"There's a pebble..."
The "yearly" is not the most favorite part of being a women. I normally make jokes about it to brush of the embarrassment and discomfort of the medical fondling and always-cold forceps. I am just meeting my examiner and she is making small talk and complementing the nail color from the manicure and pedicure I had only a few days before. Of course, my gown has the "opening to the front" and it's time to lie back. As she is conducting the breast exam she is still making small talk like a hair dresser in a salon. "No, I don't know the name of the nail color, it's just something I picked out at the shop" is all I remember saying before she stops on my left side and says "There's a pebble." She questions me if I had known about the "pebble" being there, asks about family history and tells me "it's probably nothing" but that she wants me to have a mammogram to be sure. Well something about the "pebble" conversation made the other half of the exam fade into the background as I lay there thinking that I am 34 and need to have a mammogram.

The Mid-Evil Torture Machine...
Luckily, I can have the mammogram done just downstairs and they can take me right now. Excellent! I don't have to be scheduled, I can get it taken care of and be done with it. That's how I like it, short, sweet and done with no waits. I am riding down the elevator, not thinking about the pebble and the ripple effect this one particular pebble can cause, but instead dreading the mammogram. The mammogram is the only reason I dread getting older and turning 40 someday. Age 40 is the milestone birthday when you have to start having mammograms, right? Other milestone birthdays you become legal to drive, purchase cigarettes or alcohol, but 40 is when you get the pleasure of placing your breast into a mid-evil torture machine and have it squeezed into a pancake while you have to hold your breath. Yes, that is the timeline and image I have had in my head about this moment. It has to look something like a waffle iron without the waffle ripples in it, but it's about to have me in it and I was supposed to have about 6 more years before I had to have this done. Thankfully, everything I knew about the mid-evil torture machine was a lie. Maybe a few years ago the mammogram was the torturous experience that we have had engrained in our mind since we started wearing bras, but thanks to modern medicine the mammogram was painless. We now have this amazing thing called the "digital mammogram" and Yes, it is painless! Kind of feels like I'm playing an opposites game with the words "mammogram" and "painless" but I am telling the truth was painless and nothing to be dreaded if you have never had one before. There may be a teensy tiny little amount of discomfort, but there are no waffle irons or pancake squeezing involved. Seriously, I have shoes that are more uncomfortable.

Because I'm not 40...
Well after the mammogram, I'm escorted to a "snack room" to wait while a radiologist looks at my images.Yes, a snack room, complete with coffee, cokes, and snacks. I grab a Dr. Pepper and a 100 calorie snack and begin to text my husband about what's going on. "What does this mean, I don't understand" he texts. Apparently he doesn't know what a pebble or a mammogram is. So I text "there is a lump in my breast." Wow, I look at the screen and see the words in black and white in front of me..."there is a lump in my breast." Something about calling it a pebble made is sound less scary. Pebbles are pretty right? Remember the rock polishing machines as a kid, where you put an ugly stone in and it comes out all pretty and shiny? Pebbles are not lumps, pebbles are not the c-word. I just realized the denial I was in as I went through the motions of the morning exam. The technician comes back in and tells me that the radiologist would like me to have some more tests while I'm there. Because I'm not 40, the radiologist wants me to have another mammogram with a higher intensity lens. Because I'm not 40, the radiologist wants me to have an ultrasound too. Suddenly, I kind of wish I was 40 and am not here doing this. But because I am on the younger side of 40, this is protocol for someone my be very thorough when there is a pebble.

I get a pink bag...
 Aside from the reason I was there, the office and staff are above any doctor's office I have ever been too. It was easy to thank them for their sensitivity and kindness because of the hospitality I was given. If you took the pebble, mammogram, and ultrasound out of the visit, it would have closely resembled what I image a spa to be. So after all the close ups of the additional tests, I get a pink bag to take home with me with "goodies" inside. I guess it's kind of like a souvenir from the morning: a pink tote with a white ribbon on it with a pink cup, pink pen and pink bottle of hand sanitizer in it. I walk out to my car passing others entering and exiting the building and thinking about the pink bag in my hand. Somehow this pink tote feels like a breast cancer bill board and I'm wondering if everyone who sees me holding it thinks I have breast cancer....Now I'm wondering if I do have breast cancer.

What if?
When you throw a pebble into a pond, you get a ripple of waves. My first wave of emotion hit me when I got in the car and placed my purse and pink bag on the seat next to me. I know it's probably nothing, but What if. As I drive home to see my husband and replay the morning with him, I am overcome with the overwhelming emotions of what the pebble has brought with it. I cry on the way home, wiping my tears as I drive, trying to "have faith," "be optimistic" and "stay strong." I'm literally cliche-ing myself home. Knowing that it's probably nothing, but What if?

Day 4 of the Ripple
Well that was all on Wednesday. I called Thursday to check on the results and was told they normally take 5 days to get back. 5 days? 5 days of the unknown to me is worse than my initial perception of the mid-evil torture machine. Oh, and of course there is a weekend in there, so I won't have my results for probably 7 days now. Well it's 8:14 am on Saturday, Day 4 of the Ripple from my pebble and though I try not to think about the pebble and the what if's, I woke up and had to share about my pebble. Because this week, my pebble is in the back of my mind, my husband's mind and my family's mind. I am an optimist, I am also a Christian that believes in healing, but I am also a woman with a lump in her breast and emotions and fears that are valid and real and that don't make me any less of a Christian or optimist. Right now I am a little scared. Right now I know the odds are in my favor, but I also know that 1 in a statistic is not a's a person who thought it wouldn't happen to them.

Friday, September 23, 2011

Why A Blog?

Why a blog?
I have no idea! Will anyone read it? I have no idea! Is what I have to say important? Depends upon the day, the mood and the situation. I grew up as a "journal-er", and I guess it just never grew out of me. I have all these words that I have to get out or at times I feel they will explode inside my brain. And my brain never's always life.

Why the name "A Journey Through Adolescence"?
Growing up, my words always came out in poetry. I have a stack of handwritten and typed pages, scraps of memo pads and the occassional napkin or two that I had to scribble the words out onto. If I didn't get them out of my head, they would keep me up at night or haunt me just the same. I always had this quiet dream of putting them all together in a book of some form. Thus the reason some of pages are typed....but I just never got around to really getting them all typed up in a neat clean computer file and going through the task of investigating and risking the disappointment of attempting publishing. That said, I thought I would name the book "A Journey Through Adolescence" because most of this "stack" is from my preteen through early adult years. But now at 34, I'm convinced we never get through adolescence. Our life is this journey and we are constantly growing, experiencing and learning. If you're not, than you really need to be doing something other than staring at a computer screen reading my words. Anyway, we are constantly learning and there are those times where I have mistakenly thought that "I have it," "I understand,"or "I've arrived" only to get thrown the next lesson I had not expected or even realized I needed to learn.

A friend of mine posted on facebook about not having her game-face on...I commented with "If you can't find your game face, put on a catcher's mask....that way you'll be ready for anything that gets thrown at you." I read my words back thinking, "Wow, that was pretty good, that's a good thought." The next day I was hit with a curve ball I didn't see coming. We are constantly getting hit with those "curve balls". That's life. I intend to share a little of mine with you here. Here is "A Journey Through Adolescence"...