Friday, December 30, 2011

A Day In The Life

Pack the bag for the road trip.
Get up early, and cry as your baby cries because you can't nurse him.
Try to give him water from a sippy cup when all he wants is to cuddle up next to you and go back to sleep.
Get on the road and make small talk because both of you are scared, and mindless chatter makes the time pass more easily.
Follow a nurse to the room that will start everything, and absently clutch your baby a little closer to your chest just in case someone tries to take him before you're ready.
Go through his awful medical history AGAIN.
Discuss how "routine" this will be, while simultaneously reading the list of possible risks that "never happen."
Marvel at your baby's disinterest in the IV being placed in his arm, and smile politely at the nurse who compliments him on being such  "good boy" and all you can think is  he's been through so much that puncturing his skin with a needle is nothing.
Hold him while they administer the medication that puts him into an instant state of deep sleep.
Hand him over to a stranger (and hope, silently that for just these two hours that this person could love your baby as much as you do.)
Walk. Out. Of. The. Room. And immediately understand the saying, "the decision to have a child is to accept that your heart will forever walk around outside your body."
Go to a waiting room and pretend that you are interested in the magazines or the latest internet story.
Pace back and forth and back and forth and back and forth.
Steal glances at your spouse every once in awhile and catch him doing the same thing.
FINALLY the pager buzzes and you get to go back...

But WAIT!  What does "back" mean?  What are we going "back" to?
Sure it was a "routine" test, we don't know the meaning of that word anymore.
We know what it's like to watch your baby slip away from you.
What if after I make the walk down this endless hallway, the baby I see is not mine?
What if he doesn't make the scrunchy face anymore?  What if he doesn't remember our games we play?
What if something went wrong...again?
But, no, this is crazy.  It's a ROUTINE test.  You're making it all up in your head.  But, wait...you look at your husband and see your fears mirrored in his eyes.
Deep breath...there he is...and there's that SMILE.  
It's MY baby.  HIS eyes, HIS smile, HIS reach for Mommy.
Thank you, Thank you, Thank you!!!
Hold him to your chest and realize how very lucky you are in that moment.
And that moment is all we need, because it's all we will ever have.

Friday, December 2, 2011

Special Needs Family

What do you do when your world turns upside down?  When one morning you wake up and realize that black is white and stop means go? How are you supposed to feel in that moment when you learn that sometimes things don't go just as you planned?  That dreams change, and lives shift.  That finding out you are pregnant doesn't  mean that you get to have a baby.  That having a child may not always mean what you think it does. 

We have this preconceived idea of what parenthood should look like without even thinking about it.  Life can be so obliviously happy and carefree when we get to assume certain things.  For example, we assume that having a baby will be "difficult" but at the same time we have visions of bassinets and bicycles, prom dates and graduations.  We figure we can handle the "difficult" parts, such as sleepless nights and getting them to eat their vegetables, because we have these other good things in our future.  These assumptions are important because they are what make life great.  They are what keep people hoping and living for tomorrow.  But, these are also the things that are lost and mourned when life takes a turn that you weren't expecting.  Assumptions are luxuries, and ones that you won't find in the home of a "special needs" family.

I say family because it's not just one of us who has special needs.  It's true that our youngest son has the challenging medical history, but he isn't the only person affected.  We have other children, and their needs matter too.  It's vital that we know the extent of our son's medical needs, his medications, his therapies, his appointments.  But it is equally important that we remember that today is "red" day at preschool, or that our oldest son wants to be reminded to take his Papa's guitar for show and tell.  We must also  be aware that while other children are giving thanks for their friends and families that our 6 year old daughter gives thanks for hospitals and doctors because they "saved" her little brother.   My husband is just like any other man wanting to protect his family and control any situation that may cause us harm.  His needs are knowing that we appreciate everything he does for us, and helping him to realize that it takes all 6 of us protecting each other,  that no one member of our family can do it alone.  My needs are relief from constant fear, and the realization that my life cannot be lived for someone else.  As much as I love my son, I need to be reminded that my life matters too.

Special needs families don't think about where to take their next family vacation.  They think about IF they ever will, or IF they'll all be there to enjoy it.  They remember what it was like to dream about bicycles and prom dates, but they now jump for joy at the sight of adapted walkers and a single look of acceptance.  Their diaper bags are so full of medical equipment that they find they have no room for diapers. However, despite the loss of assumption, the shift in dreams, the change in life's path, I think you will find that special needs families are genuinely happy.  We have a greater understanding of what it means to cherish the moments we are given.  We see the futility in planning one's life, and instead learn to roll with what we've been given.  This is not to say that there isn't anger and pain along the way, it's just that when our lives turn upside down...we simply learn to walk on our hands.

Wednesday, November 30, 2011

The "Not So Lost" Sheep

I am not a religious person, and I never have been.  As you can imagine, this statement doesn't win me a lot of friends.  But, I don't feel "lost" or "uncertain" about my spirituality. I absolutely believe in the greater good, in something bigger than myself, and above all else, I believe in love.  The problem is, until this past year I kept looking for "it" where most people do, in church.  This is not to say that people cannot find peace and happiness in a church.  In fact, I have great respect for religion in that it has the ability to bring out the best in some people.  It provides comfort and strength to people when they have nowhere else to turn.  It just doesn't happen to be where I've found mine.

I try not to get wrapped up in the idea of heaven and hell being real, but I certainly think about it from time to time.  I think that I, like most people, would like to believe that heaven exists.  Of course everyone would like to believe that losing a loved one can result in something positive.  And, I will admit to having read, "Heaven Is For Real" and taking great comfort in the author's idea of heaven.  I absolutely believe in the existence of Hell, because I've been there.  For me, it isn't a fiery underworld dictated by a fallen angel.  It's being thrown in the face of  your biggest fear, and the feeling of helplessness and powerlessness that goes with it.  And as awful as it is to realize that you are experiencing what no one would argue is indeed "hell on earth", it also happens to be the very thing that brought me to my current state of spiritual peace. 

This is where my belief in love above all things comes into play.  When I felt lost, with nowhere else to turn, and I was begging and pleading for someone to tell me "why", I got an answer that I didn't expect.   I will never know the "why" of any situation, but somehow that doesn't seem all that important anymore.  I don't believe that there is some vengeful, wrathful god handing out punishments, deserved or otherwise. I feel that examples such as these are the reasons that religion sort of loses me. I believe that life just happens, and it's what happens DURING the tough times that give you strength and peace.  It's the people around you, lifting you up and giving you a portion of their own inner strength that keeps you going.  PEOPLE are what matter, and their love and support during times of great pain is more spiritual than any sermon I have ever heard.  For me, "God" is making a warm meal for anyone who just needs to know that someone cares.   It's hearing words of encouragement from those around you when all you can see is despair.  It's offering money, food, services, or just an ear when someone truly needs it.  I believe that there is nothing that we can do as human beings that means more than loving each other.  No rules, no judgements.  Just love.

Many of you will see a parallel between my beliefs and parts of religious belief, and I wouldn't deny that for a second.  I welcome ALL support and ALL prayer.  It makes me feel good to know that people would take time out of their day to pray for ME.  Because prayer is important to them, and they take comfort in it's power and ability to restore their faith.  What could ever be wrong with accepting that?  So, I say thank you for your prayer.  Thank you for sharing your faith with me.  It matters to me because YOU matter to me.  And I will never be lost as long as I have you.

Monday, November 21, 2011

Good Day

Sometimes you just know when you're going to have a good day.  I think today was that day for me.  Well, I'll let you be the judge.  I "woke" up, or rather got out of my bed because you can't really call it sleep when you get up every hour and half, can you?  But, at least I was able to get up, right?  Anyway, I noticed that my youngest (aka, my little pain in the derriere) sounded particularly crappy.  As in, he was hacking up a lung and his chest sounded like he was breathing through water.  This is usually a pretty good sign that we will be making our monthly trip to the Hilton/Blessing Hospital pediatric unit.  However, instead of freaking out, I just gave him his medications, let him do his therapy, took a shower, and packed a bag before heading to the clinic for what I was sure was going to be my one-way ticket to the hospital.  

I picked my daughter up from preschool and gave her the little bag I had packed for her to play with at the doctor's office.  She said, "Mommy, are we going to see Dr. Minnick or is Eastie going to the hospital today?"  I told her that it may end up being both.  She just shrugged and said, "Ok, did you pack my Mobigo?"  When I informed her that it was in the bag along with all the games that go with it, she said, "Thanks Mommy!  You're the best!  Now I will have something to play while the doctors fix Eastie."  She then began telling me a story about school and asked one of her questions in that way that only a 4-year old can.  "Mommy, how big is Daddy?"  I found myself feeling grateful that I had such an easy-going, happy little girl.  She wasn't phased at all that our routine would be interrupted, or that she would have to sit in a doctor's office for what has proven time and time again to take hours upon end.  She was just happy to be talking to me about her day. 

The day got better because not only did Easton NOT end up in the hospital this time, he also didn't have to have any blood draws or chest x-rays.  This NEVER happens.  I had packed a bag for both of us in anticipation of at least a three day stay, and instead I was going home!!!  Yay!  I got home, put Easton down for a nap and made lunch for Morgan.  Just as I finished doing that, a friend from my children's school called and said that Logan had hit his head at recess.  I wasn't phased at first because they are always really good about calling when a child gets hurt at school.  But, as I listened to more of the story I realized that we were probably dealing with a concussion.  Really?  So, instead of taking a nap while Easton and Morgan slept, I called my Dad to watch them while I picked Logan up from school and took him to the emergency room.  The doctor decided that after her neuro exam that the benefits of a CAT scan would not outweigh the risks of radiation exposure.  So, he probably has a mild concussion and we just have to watch him for the next week or so. 

So, see?  A good day.  Instead of spending the night in the hospital, I am home with my family.  Instead of all of the things that can happen with severe head injury, I'm simply watching for signs of a mild concussion.  And I noticed while they were examining Logan how nice it was to say that he was a typically healthy kid.  I got to answer "yes" to questions like, "Are his immunizations up to date?", and "no" to ones like, "Has he ever had any major illnesses?"  It was so nice to hear that come out of my mouth.  If you'll recall I had called my father to come sit with my children while I took Logan to the hospital.  He answered, said yes, and showed up.  That, in and of itself, is something for which to be grateful.  Not everyone has a Dad that will do that, or that is able to get away in the middle of a workday.   Also while we were waiting in the ER, Easton's neurologist called me and told me that because I didn't see a significant decrease in his seizures with medication increase that I could hold off going up on it this week.  He's still having seizures but I'm grateful to not have to go up this week. Even if we end up having to do that in the long run, today we don't!  And, if you think about it, TWO of my children DID NOT have to see a doctor today!!!

Plus, I don't know if you remember, but another amazing thing happened today...I showered. 

Monday, November 14, 2011

Honesty is the best policy

Honesty is the best policy, right?  I mean, that's what I tell my children.  My entire blog is based upon not being afraid to tell the truth.  And, I stand by this claim 100%...unless of course the persons reading this happen to be my husband or my children.  I am a woman after all, and sometimes it is probably just better to come up with a really good lie/compliment in order to ensure your allowance back into my house.

My propensity for honesty has actually gotten me into trouble throughout my life.  Of course there are those moments when I should probably just keep quiet so as to dispel any sort of awkward situation, and instead find myself all but standing on my chair in the middle of the room sharing my version of the truth.  But, recently  the trouble has been that I've noticed my children being entirely too honest about things...mainly me.  Here are a few examples:

1. "Mommy, when I get big are my boobies going to get long and fall down like yours?"  -Addison

2. Morgan:  "Mommy, is art a talent?"
    Me:  "Yes it is."
    Morgan:  "Mommy, does everyone have a talent?"
    Me:  "Everyone is good at something, so yes."
    Morgan:  "Oh well, anyway...when are you going to get a talent?"

3.  "You know, Mommy, you may think you are young right now, but you would be dead in cat years."  Addison

4.  Morgan and I once went into a public restroom and shared a stall.  This was our conversation:
     Morgan:  "Mommy, can you get my toilet paper ready right now?"
     Me:  "Ok, why?  You can just get it yourself when you're done, can't you?"
     Morgan:  "Well, yes, but you are gonna go potty next and I won't be able to throw it in the potty seat because your bottom is SO big and there won't be any room."

5.  I recently sang at a wedding, and I hadn't done so for many years.  I was enjoying the comments from friends and family praising the job I had done.  But, when you have children you should never worry about getting a big head.  They tend to fix that problem.
Me:  "Well, that was fun.  What did you think?" (to my son, Logan)
Logan: "Yeah, do you think it was the microphone that made it sound bad?"
Me:  "Excuse me?"
Logan:  "Well, I mean I've heard you do it at home and it was good.  I'll bet it was the microphone."

And while we're on the subject of telling the truth, men should know that there is only one way to answer the, "how do I look?" question. Here's the thing, if she thought for one second that she looked anything less than great in what she has on, she never would have come out of the dressing room in the first place.   You just smile and tell her she looks great.  EVERY SINGLE TIME!  It is never acceptable to give us your honest opinion when it comes to something we're wearing.  In fact, if a woman ever asks a question related to her appearance just let your mind sort of glaze over and pretend that she just told you that your favorite team just won the pennant.  Even if she says, "No, I REALLY want you to tell me the truth."  She is lying.  Go with the pennant, trust me. 

I'm ultimately going to stick with my original premise, that is, HONESTY IS THE BEST POLICY.  Unless of course you have ever inhabited my uterus, or if I have agreed to take your last name.  In either case, you still owe me.

Monday, November 7, 2011

Stinky Face

Have you ever read I Love You, Stinky Face, by Lisa McCourt?  Well, it's this little book of genius that I discovered yesterday and this is why it, along with a visit from my mom, saved me from a day of destruction.

Yesterday started out pretty well actually because I got up earlier than usual (because I'd actually slept longer than an hour) and worked out.  I then got to take a REAL shower because it was Sunday and my husband was home so I didn't have to wipe, feed, or yell at anyone while shaving.  After my shower, I decided to check out my facebook page while waiting for my son to wake up.  I was a little nervous that he'd decided to sleep in so late, but decided to write it off as the difference in time change and enjoy a few moments of peace.  While on facebook I noticed a fellow "mommy of an epileptic child" said that her morning was ruined because she was awakened by her son having a seizure.  I felt that familiar pang of fear at the thought of being awakened in such a way, and my mind flashed to the image that plays repeatedly in my head.  I read the responses to her post and noticed that she eventually wrote that now "things were better."  I couldn't help but think about that word, "better."  What does that mean in this new world we live in?

A few minutes later, my son woke up and I went down to get him out of his crib.  Instead of the silly smile he usually greets me with, he looked up at me slowly and saw this droopy-eyed far away expression on his face.  I picked him up and immediately assessed him for signs of a seizure.  No tremor in his extremities, no fever, no cough, no respiratory distress.  Not even a runny nose.  Ok, so what was the problem?  Fear gripped my heart further as I set him down and he didn't protest as I walked away.  This was not the same baby I'd put in bed last night.  Was it all starting again?  Was this something new?  Who should I call?

I ended up calling my favorite pediatric nurse and very trusted friend, Carla. I didn't know what I wanted her to tell me.  In fact, I don't think I was expecting her to say anything, but she knows Easton and she knows me and she knows the pain and fear associated with having a child who scares the crap out of you on a daily basis.  I just needed to hear a voice that I trusted.  Just talking to her made me feel a little better, and I decided to just watch him.  I called my dad because that's what I do when I freak out, and he came to stare at Easton with me.  It's just become part of our lives...staring at Easton.  My dad suggested that maybe he just had a headache or a stomach ache or something.  This hadn't even occurred to me because we don't "do" easy.  We don't just have "headaches."  I gave him Tylenol anyway and an hour later he seemed to perk up a little.  However, the damage had already been done.

At the first sign of something possibly being wrong, I began a mental checklist of all the things I would need if we ended up in the hospital by the end of the day.  I even went down and put on my best "living in the hospital" jacket because it's comfortable and has pockets.  I was so glad that I'd already showered because that would be one less thing I'd have to do in a hospital room later.  This is how I live.  Just when I think things are getting "better" something comes along to slap me in the face.  You can't live in a state of "fight or flight" every single day.  You can't be "strong" all the time, and so I wasn't.  I mentally shut down yesterday.  Easton began to act more like himself, and as he got better and better, I felt increasingly worse.  My head hurt, my stomach hurt, and I didn't want to do anything but sleep.  Unfortunately sleep doesn't happen either, so I just got through the day.  Sometimes this is all I can do.  Luckily, things were about to take a turn.  It wasn't a cure-all or a permanent fix to the problem, but it was just the band-aid I needed. 

My mom came and got me out of the house.  Just the walk to the car in the fresh air helped my mood a little.  We went to a restaurant and shared some comfort food, and it was amazing.  We then did a little mindless shopping.  I didn't need anything from the store, but what I did need was to not be in my house counting seizures for a few hours.  Then, just as we were getting ready to leave I found this little book.  I Love You, Stinky Face is a book about a little boy whose mother tells him she loves him right before bed, and he then proceeds to test the extent of her love by asking several "what-if" questions.  "But Mama, but Mama, what if I were a super smelly skunk, and I smelled so bad that my name was Stinky Face?  But Mama, but Mama, what if I were a big scary ape?  Would you still love me then?"  I read the whole book while standing in the checkout line, and began to cry.  Of course she would love him if he were a super smelly skunk.  Of course she would still care for him even if he were a big scary ape.  She would give his skunky-smelliness a bath, and she would make a big banana birthday cake to feed her hungry ape.  She would sit by his bed and hold his hand while he was ill, and stay strong for him even when she thought she would surely break.  And she would come pick him up, and take him to eat some super-indulgent food and do some mindless shopping just to scare away a crappy day.  And she would do this because she is his mother, and that's what mommies do.

I love you, Stinky Face.




Saturday, November 5, 2011

A Rough Landing

Well we jumped, and just as I'd suspected,  a parachute would have been nice.  We finished weaning the Keppra last Sunday.  By Tuesday he began having strange movements that were eventually identified as seizures.  They obviously weren't as dangerous as the first one, but they did warrant another trip to St. Louis Children's hospital via fixed-wing airplane.  However, this second time around was decidedly different from the first. 

The first time we left I had tunnel vision.  I was petrified, uncertain, shaky, confused, and pretty much on the brink of total meltdown.  This time I was a little more in control, partly because Easton's situation seemed far less dire and partly because I was involved in the decision making process.   While we were waiting for the transport team to arrive Easton was yelling at everyone who came into the room, pulling the iv pole over, and eating a popsicle.  This was a decidedly different scenario than his first trip.  We arrived at Children's safely and were taken to our room.  We had a roommate, and that can be interesting when you're trying to share a room and sleep with two babies and two families.  However, it was very nice to talk to someone who had some idea of where I'd been.  Our stories are very different, but the look in her eyes was oddly comforting.  We both live in a world of parenting that, thankfully, most parents will never experience.

At first we felt like the trip had actually given us a few more "answers" to our never-ending questions.  But, like all things associated with this roller coaster,  we had some unexpected discoveries as well.  We were told initially that the little jerking movements that our son had been making all day long, every day for the past 6 months were just "myoclonic jerks" and that they weren't harming him.  Hopefully he would grow out of them eventually, and we'd forget they even happened.  Then, while taking two of our other children to the doctor for a persistent cough, I received a call from the neurologist saying that upon further review of the EEG, they had come to a general consensus that the movements were, in fact, seizures.  I immediately felt that knot in the pit of my stomach.  The fear that sort of bubbles up all the way from the bottoms of your feet was returning full force.  My mind began racing with scattered thoughts and possibilities.  If you could have seen my thought process it would have looked something like this:

Ok, so if they are seizures and he's been having them every day all day long for 6 months, how could I have missed it?  What have we been neglecting to do for him?  Is he gonna need more medication?  Will I let them snow his brain again for something that doesn't seem to be doing irreparable damage?  Why has he been progressing so much physically and cognitively if these are seizures?  Do the docs really know or is this another guess?  What will I tell Jeff?  This will kill him.  I don't want to be the one to cause that look of pain on his face.  Maybe I won't tell him.  No, I have to tell him.  He's my partner, my teammate, my strength when I can't stand anymore.  He has to know. 


I actually probably missed some of the conversation with the doctor because these initial thoughts were kind of taking up all of the room in my brain.  I did tell Jeff eventually, and I had been right about his reaction.  He was also furious and confused, but mostly just hurt and I've seen that look on his face too many times in the past year.  I knew he wasn't mad at me, or at Easton, just at the whole stupid situation.  I also knew that nothing I could say would change how he felt at the moment, so I just picked up my baby, sat in the rocker with him and read an alphabet book.  I just let the tears roll silently down my face.  Now the jerking movements I felt as I held him meant something new and I couldn't deal with the pain that brought.  So, I just "ignored" them and finished the book.  I realized that our life is kind of like when you learn to go to the basement during a tornado or a bad storm.  You know that it's what you're supposed to do, but the truth is that the basement doesn't have any magical powers.  It doesn't guarantee that once you get there you are undoubtedly safe from any possible harm.  It's just your best option.  That's all the security any of us have.  My family is just a little more aware of that now.


Since then I've had time to clear my head and to think about my next move.  I could have stayed angry, but I don't have time to waste on being mad about something that I can't change.  I had to rally my support system, and remember that he's still here in this moment and that is something.  I've begun to look at alternatives to treatment for him that include dietary changes, homeopathic remedies, and pretty much anything else I can get my hands on at the moment.  I may not be able to change any part of the situation, and I even know that I cannot "save" him.  But, I will sure as hell die trying.

Sunday, October 23, 2011

Weaning Keppra: And other scary stories.

As we near then end of the Keppra weaning process, my anxiety mounts once again.  I'm posting this with the hope that 5 minutes, 5 days, 5 years from now when a mom is looking for ANY sort of information about the weaning process, she may somehow come across this blog and know that someone, somewhere has "been there."  It's so hard to find REAL information about seizures and the pain they cause because everything you read on medical sites is so sterile.  It doesn't give you any idea of the physical and emotional toll that living with seizures can present.

I think the most difficult thing about seizures is that they are so unpredictable.  Obviously the first one a person has is not going to be expected, but even a repeat episode can come with little to no warning.  It's such an "out of control" feeling.  I have never felt more helpless as when my son's body was jerking uncontrollably.  Doctors and nurses were whirling around our heads, giving medications, giving orders, and saying what I would eventually learn is the mantra for seizures, "we just don't know."   This initial shock to the system is also when one learns how to live with a constant knot in the pit of your stomach.

Unfortunately, it doesn't get easier from there because now you get to play the medication titration game.  They try all kinds of different combinations and cocktails of medications, all with the express purpose of shutting the brain down.  You then see the seizures start to subside, but you also see your child slip further and further away from you.  So, you tell me what I'm supposed to hope for at that point.  Do you hope that the meds work and the seizures stop only to realize that your child is now an unrecognizable shell of his former self?  I thought that weaning would be less stressful because we'd be getting rid of the awful drugs that make him so sleepy and lethargic.  Of course,  it's not easier.  In fact, I feel as anxious bringing him off of a medication as I did when we were adding them. The actual act of weaning makes him anxious and cranky and twitchy.  He physically can't stop moving long enough to fall asleep even though he's exhausted.  It breaks my heart every time he looks at me as if to say, "What is wrong with me?  Why do I feel like this?" I'm his mom, his comfort, and I can't give him an answer.  I can't take away his pain.

We have moved from three medications, phenobarbitol, topamax, and keppra down to just one.  Tonight is the last dose of Keppra, and the knot in the pit of my stomach has returned full force.   The questions play over and over in my mind:  What if I'm doing the wrong thing?  What if he actually needs this medication?  What if we make it all the way to the end and he seizes again?  What if we get rid of the thing that we think is holding him back only to find out that this was as far as he was ever going to go?  What if the jerking movements continue even in the absence of the medication?  He has made so much progress and we are grateful for every single thing he does all day long, but that doesn't mean that we stop hoping for him.  We haven't stopped dreaming that one day we'll get to chase him through the park, or watch him get his first hit in tball. 

Sometimes I feel like we are jumping out of an airplane, and we have a parachute, but it's only a picture of one.  It's like we are able to see what safety and security look like, we just aren't allowed to actually have them. So, tonight, as I give the "last" dose of medication I will be both excited and terrified.  And, parachute or not, we've got to make the jump.

Monday, October 17, 2011

My Re-Initiation into Womanhood

I have been pregnant and/or breastfeeding for over 8 years now.  This little tidbit of information is important to note as my most recent revelation has to do with something that is old and familiar but in an odd way, sort of new and pretty annoying...my period.  Now, 99% of the men reading this blog have already turned their computers off by way of dropping it on the floor in horror.  This is something I've never understood.  I mean, simply reading this blog does NOT mean that you are going to get anything ON you.  The male reaction to the word tampon is also ridiculous.  Why is it that at the mere mention of that word, they snarl their lip and back away as quickly as possible?  Here is the thing boys, we don't purchase them used.  I'm sure that, by now, any man with enough kahunas to continue reading after the word "period" has officially logged off as the buzzing in their ears has now given way to lightheadedness.  Why is that?  Why is this such a big deal?  Maybe this is my nursing background coming to light, but I just don't see why we have to get all hush, hush and freaked out about it.  I mean, to me, we're just talking about body parts, and I've never seen anyone get all twitchy over an elbow.  Knowledge is power people, just ask questions.

But, I digress.  The real reason I've been so overwhelmed by this subject is that I've actually had to deal with it lately! Eight years is quite the hiatus after all, an apparently there are a lot of "new" annoyances associated with periods that I know were not there when I was in my early teens. This must be the new and "improved" version.  Anyway, it is extremely annoying to workout everyday, eat right, and finally start feeling good about yourself only to be blindsided by an animalistic need to devour 8,000 calories in the next 5 minutes.  This is NOT a joke, men.  It is NOT a "craving" as that implies that someone simply WANTS to eat a specific forbidden food.  I am talking about the fact that I would have chewed off my own right arm to have a plate of nachos the other day.  And, don't even get me started on the fatigue.  Holy crap!  This is worse than pregnancy.  My husband tried to tell me the other night that he was "tired."  This seems like a harmless statement, but not when you're saying it to a woman who is re-learning what it means to have to pick your eyelids up of the floor.

And perhaps, just perhaps I may be a little more moody than I remember???  I'm sure that my darling husband would disagree or at least he would have until a few days ago when he said one of the dumbest things I've ever heard spill from his lips (and that's no easy feat).  I was nursing our son, and he was reading the paper.  First of all, how nice would it be to get to sit in a chair by yourself and actually READ something while children are awake?  Anyway, he says (without even looking up from the paper), "You know, son, when you're 2 we're cutting you off."  Once the smoke coming from my ears cleared the room, I believe my rant went something like this:

"Oh, wasn't that interesting, Easton?  Wasn't it amazing to hear such a unilateral decision made by someone whose boob is NOT in your mouth? I mean, you would have thought that HE was the one getting up with you 3-6 times every night for the past year.  And HE must have been the one pumping every three hours when you were sick, bawling his eyes out wondering if the milk he was working so hard to preserve was ever going to be given to you?  He must be the guy that's working with you every day, at least 5 times a day trying to teach you to drink from a sippy cup while juice spills all over his arms and frustration threatens to send him heaving the cup through the kitchen window!"

I think he got the point.  

Thursday, September 29, 2011

The Climb

"I can almost see it, this dream I'm dreaming.  But, there's a voice inside my head that says, 'You'll never reach it.'"

We all have our own crosses to bear, our own mountains to climb.  A friend of mine recently asked me when I was going to be posting a new blog, and I told her that I had tried to express some changes I've been experiencing but had started to write several times and just couldn't get it quite right.  Usually I just sit down and start typing, and am generally satisfied by the time I'm finished.  For some reason, I couldn't quite pinpoint exactly what I was feeling.  Leave it to one of my children to show me how.

I've noticed that my attitude is different.  Now, that's not a blanket statement.  I'm still a cynical, straight-forward, pain in the ass.  But, I have noticed that, lately,  my reactions to situations seem to have more of a "soft" edge.  I still react to things that have bothered me in the past, but with renewed perspective.  For example, houses with children in them are going to be dirty.  If you don't believe me just take a look at any of your old home videos.  You'll notice that your children can only do camera-worthy things when your house is trashed.  The kid will be standing there singing a rendition of  "Twinkle Twinkle Little Star" that rivals Sinatra, but you may not be able to distinguish which child it is because you haven't dusted in about three months.  You can go ahead and clean beforehand and fully charge your camera battery in preparation for what you are just sure will end up being your little genius' audition for Julliard, but the kid will inevitably end up in some sort of staring trance and may even drool a little.  You can't plan these things.  They just happen, and at one time I may have obsessed a little more about a messy house.  But now, all I can think of every time I see a stray toy is that it's a sign of LIFE in my house.  Don't get me wrong, I still go all ape-shit when someone leaves a trail of dirty laundry down the hallway, but the fuse is a little longer now.

Easton is in the hospital again.  This time we're in our local hospital for his respiratory issues.  My reaction to the announcement of this current hospital stay actually made me laugh out loud.   When the doctor told me that we'd have to head over to the hospital, my first thought was, "Do I have the good kind of chap-stick at home?"  This is hilarious to me because of all the things I could have been thinking in that moment, I was worried about what kind of lip balm I'd be using!  Anyone who has had an extended stay in any hospital knows that the air is very dry and it's almost imperative that you have a good tube of chap-stick.  But, really?  That's my reaction to, "Your child needs to be hospitalized,"?  Let me tell you, it absolutely IS the reaction you have when the word "crisis" has been changed forever. I now know what serious is, and this isn't serious.  It is slightly annoying, mildly exhausting, and occasionally troubling, but it isn't an "intubation, coma, near-death experience." 

Hospitals are the worst places on earth in terms of getting anything approaching a good night's sleep.  I'm extremely tired, and I'm sure I wouldn't like to keep this pace very long but every time I look over in that crib, a bright-eyed, ornery little boy grins back at me.  I would take 100 more visits like this one, if it meant I'd never have to see my child motionless again. So we pay a few more hospital bills, and we lose a little more sleep.  It's nice to be able to complain about such things.  The paths may be a little steeper and a little more treacherous than before, but the scenery along the way has been infinitely more beautiful.  I want to thank my children for changing my mountain.

"It ain't about how fast I get there, ain't about what's waiting on the other side...it's the climb."

Sunday, September 11, 2011

Tooth or Dare

Every mom knows that there are a few simple truths that we must accept as fact.  For example:

FACT:  If you have a particularly embarrassing story that you had hoped would NEVER be repeated while you were still alive, your 4-year-old is going to make re-telling it to the wal-mart cashier her top priority.

FACT:  If two or more children are sitting within spitting distance of one another at least one of them is going to inhabit the other one's "space." (and probably do a little spitting too, for that matter.)

FACT:  If you forget to pack an extra set of clothes one damn day out of the entire freaking year, THIS will absolutely be the day that your child pees, poops, or pukes all over themselves.

FACT:  If you lift up any one of the couch cushions in your house at any given time, you are likely to find at least three cheerios (even if you've never purchased any...cheerios can appear by spontaneous generation), an earring you thought YOU lost two years ago, and something that you "hope" is a raisin.  

FACT:  If you decide to be a "good mom" and encourage your children to brush their teeth, that's fine but just know that you are to blame for the new toothpaste wallpaper in your bathroom.

This last one is particularly disturbing to me.  I've tried and tried to figure out exactly how that much sticky nastiness can come out of that tiny little tube.  It's freaking EVERYWHERE!!!  It covers the sink, the wall, the toilet, the 4-year old.   I seriously don't understand this.  I don't think children should be allowed to have a mirror in their bathroom because no matter how many times you clean it as soon as you turn around, the toothpaste fairy spatters crap all over it again.  And of course it isn't a nice, minty smell that you may be able to stand for 5 seconds.  OH NO, it's that uber-sticky, glitter-clad, bubble gum nastiness that your children just HAD to have.  I have shown my children NUMEROUS times how to properly spit in the sink and rinse their toothbrushes out.  It isn't rocket science, and my kids are relatively intelligent beings.  So, I continue to ponder the reason for the incessant stickiness.  Do they not understand?  Do they have some sort learning issue I haven't yet discovered?  Or do they just hate me and like to see my face turn 6 shades of red on a daily basis?

Well, I think I may have recently discovered the answer.  Due to the growth of our family over the past couple of years, we have had to do a little room rearranging.  I used to have my own bathroom, and the kids shared a bathroom with their dad.  Now the adults share one bathroom, the kids the other.  A few nights ago, I was talking to my husband while he was brushing his teeth and I watched in horror as he finished up and walked out of the bathroom.  It WASN'T that my kids didn't understand.  It WASN'T that they had some sort of learning disability.  It WASN'T that they hated me so much...IT WAS GENETIC.

Friday, September 2, 2011

The Garden

One of the most beautiful places I have ever been is "The Garden" at St. Louis Children's hospital.  Part of it's beauty has to do with the hundreds of different flowers and plants, and the soothing water running through the middle.  But the thing that makes The Garden so unique is it's ability to provide therapy for the patients and families at the hospital.  If those flowers could talk...but that's exactly why it's the best type of therapy.  It's a place that you can go to feel every emotion that comes with having a sick child, and  you don't have to speak to anyone.  You are free to really FEEL everything on a very raw level. 

When Easton was in the hospital, I never left the grounds.  And while that may sound sweet and sacrificial, in reality it wasn't very healthy.  At times I felt crazy.  I didn't sleep, or eat and I rarely went outside to walk around.  The Garden became my sanctuary.  When we got bad news, and I couldn't handle it anymore, I would go up there and feel what I felt was stifled by the walls of the hospital.  I went there to cry and to scream, but also to smile and laugh.  And sometimes I went out there just to breathe.  I remember one moment when everything seemed to be falling apart, I went out there by myself and as soon as I stepped on that little path around the water, I was able to release a flood of tears. I called my friend Jamie, who unfortunately knew the pain of watching your child suffer.  I don't even remember dialing the number.  I just remember her voice on the phone, and then my voice as I yelled and screamed and pleaded for her to tell me how to deal with all of it.  She just listened and said all the right things, and I will be eternally grateful for that.

I remember going up there another time and seeing all of these children being wheeled around in wagons.  They were pointing to the flowers and laughing.  I was so angry that Easton couldn't do something as simple as ride the elevator up 1 floor to come out and enjoy the flowers with me.  And, I don't just mean "angry."  There were times that I was seething.  Every emotion was supercharged and lined with pain.  I also felt fear...  overwhelming fear that sucks the breath right from your lungs.

I remember then the first time they allowed us to take Easton to The Garden with us.  Jeff and I were so excited to get him out of his room, but even more so to share with him the only place that had allowed for true BREATHING in the past month.  We took the camera, and you would have thought that it was his first birthday!  We took about 20 pictures of him outside enjoying the air around him.  At the time I don't even know if he knew that he was outside.  But we felt like it was such a huge step forward that we pretended that he knew exactly what we were talking about.  We pointed out flowers and we showed him the fish.  We held him in the swing, and we showed him big rotating ball in the water.  That was 4 months ago.

Today, September 2, 2011, we didn't have to pretend.  We had to return for a follow-up appointment and between office visits, we decided to take him out to The Garden.  We pointed to flowers and he reached for them.  We showed him the fish and he stood alone, holding onto the bridge and laughing at the water.  We sat him next to the big rotating ball and he reached out and touched it with an ornery grin on his face.  I laughed at him, and marveled at the progress that he's made in 4 months.  This had been my dream such a short time ago.  I had begged some silent power to let me see him enjoy this place that I'd grown to love so much.  As I stood there feeling overwhelmed with gratitude and hope, I noticed the wetness on my face.  I guess there will always be tears in The Garden.

Sunday, August 14, 2011

Low Carb and Loving It

So, I've lost a couple of pounds.  Nothing amazing or earth-shattering, just enough that I'm not currently lying on the bed to button my jeans.  (Wonder what that little running bunny would think of me now???)  Anyway, I've been working out 20 minutes a day and watching my carb intake.  I, like every other woman I've ever met, LOVE carbs.   However, it's probably one of the most effective ways to lose a few pounds.  Having said that, I am NOT one of those people that will tell you that the modified meals that I've been eating are "just as good as the real thing."  Who do these people think they're kidding?  If it's fat free and sugar free, it's gonna taste something like flavored cardboard.  We all know it's the truth, no matter what we tell ourselves.

I recently saw fat free oreos in the grocery store.  What the hell is the point?  If I'm gonna eat an oreo, it's gonna taste like a freaking oreo.  Can you imagine wasting the few precious calories you get in a day on something that someone "tried" to make taste like the real thing?  No. And don't ever trust a skinny person when they tell you that this "new hamburger bun made entirely of wax paper" is delicious!!  They have forgotten what food tastes like, and are pissed because they haven't actually eaten in the past 10 years. 

The truth is, the weight-loss thing is not easy for all of us.  If you are thin, one of two things are probably true. You are either one of those people who just happen to be skinny despite eating 6 ding dongs for breakfast everyday (in which case you should probably sleep with one eye open), or you've been in a state of near-starvation for an extended period of time and are lying to yourself about the "deliciousness" of the newest rice cake.  I was once actually interested in how the whole vegetarian/vegan thing works and read a book about the types of foods they eat and why.  I was almost sold on the idea until one of them started talking about this "new cheese that looks and tastes like the real thing and ALMOST melts!"  Ummm, excuse me?  We have to get excited about cheese melting?  Sorry, but that is one thing that I fully expect my cheese to do.  If we are looking for ways to make it melt, it isn't cheese, and I'm not eating it.  So...vegan...out.

It's also difficult to stay on a diet during that one time of the month that you are likely to become ravenous, and dream of emptying every cabinet in your kitchen.  (If you are a man reading this and just became uncomfortable, get over yourself.  It happens, and there isn't anything you can do about it, so quit fearing it.  In fact, get out a book or two and educate yourself.  It would save me a LOT of exasperated eye-rolls).  Anyway, I hate it when people try to give me snacks that are going to get me through this time of immense craving.  "Here, try this sugar-free jello with cool-whip!  You'll love it! You won't even know it's healthy!"  Yeah, ok lady, you keep telling yourself that, while I go over to the refrigerator section and pour chocolate syrup directly into my mouth.

Needless to say, I may not be following the most strict diet available, but I do think it may be time to call that little energizer bunny and challenge her to a rematch.  I'll bet this time I'd only have to wear ONE pair of spanx, and only throw up half of my lung.  She'd be so jealous.

Friday, August 12, 2011

Sticky Situation

Why is my life so sticky?  About 8 years ago, I started noticing the beginnings of a strange sort of "gooiness" in my life.  I've decided that something being "gross" is very much relative to your current situation.  For example, I have known those women who wear gloves when they do dishes because the feel of the water on their hands is just "yucky."  Yeah, well let me tell you something about yucky, my friend.  Kids give you a whole new perspective when it comes to all things disgusting.

A friend of mine recently told me that she noticed something on the back of her neck.  She reached up to scrape it off and found it to be a dried on piece of some sort of food.  She has no idea when it got there, and is fairly certain that she was not the one eating it.  This is the perfect way to explain the "ickiness" of being a mom.  We are literally, a human kleenex.  I honestly can't remember the last time I had a shirt that DIDN'T have something crusty/gooey on the left shoulder.  And, I absolutely LOVE when a newly engaged friend flashes her sparkly diamond my way, because I almost immediately think, "That's awesome, wonder what it will look like with baby poop smeared on it."

It's like being a mom means that you no longer recognize a "right place" and "right time" to have the icky conversations.  My daughter went to the bathroom in a store once, and came out with a horrified look on her face.  Of course the stalls were full of other women, and she says, "Mommy!!!  Come look at my poop!  It's green, and it has a beard!!"  Yeah, great.  One more place that I can't shop anymore.  Thanks, dear.

We've all done the unthinkable as moms.  And if someone tells you they haven't done something absolutely repulsive as a result of mommyhood, they are either a) lying, or b) not actually raising their own children.  Here are a few of the gross things we've all done, but some are too embarrassed to admit (note: after 4 children embarrassment is sort of non-existent).  You know you're a mom if...

1.  You've ever given your child a 30 second spit-bath before meeting someone new.

2. You've ever lifted a child high enough into the air in order to stick your nose directly into their butt-crack to determine whether or not you need to change a number 2.  (note: mothers do this all the time, and we don't give it a second thought.  It's sort of like waiting for the turkey timer to pop up.  Just part of the day.)

3.  You've ever dropped your child's pacifier, picked it back up off of the street and licked it off before shoving it back into your kid's mouth. (a slightly germy, quiet baby is better than a screaming one.)

4.   You've ever pulled over on the side of the road, held your daughter up in a sort of squatting position and watched helplessly as she pees directly on your foot.

5.  You've ever smelled something exceedingly vile, checked every butt in the house and eventually discovered that it's the soured milk smell of your nursing bra.  Yeah, gotta change those things every once in awhile. 

6.  You've ever looked down at your hands after a really long, hard day and noticed something slightly yellowish smeared across your knuckle and tried to remember if you'd eaten mustard that day.  In all likelihood it is baby poop, but you figure that pretending it's mustard means that you can just wash it off tomorrow if it happens to be shower day.

These are just a few of the beautiful moments in a Mommy's life.  But, like anything else, we must take the good with the bad.  Sure, I have to wipe butts while eating, but I also get the biggest, squishiest hugs imaginable.  And to be honest, I wouldn't trade those for anything.  Even if they are slightly sticky.







Wednesday, July 27, 2011

The Mommy Bikini

Every woman comes to THAT time in her life.  You know, the time that you feel crampy and crabby.  No matter what time of day it is, you are bloated and pissed.  And pretty much the only thing keeping you from becoming homicidal is a bar of chocolate.  Yep, you guessed it...I'm talking about swimsuit shopping.

Is there anything worse than shopping for a bathing suit?  No.  There isn't.  It sucks and yet we have to do it.   Even if you don't EVER actually put it on, it is imperative that you have one sitting in the back of your sock drawer mocking you every time you open it.  So, we make ourselves miserable by going in and trying it on, which inevitably turns into an inner monologue of self-loathing.  Then we spend a ridiculous amount of money on the only one that didn't immediately make us throw-up in our mouths a little, and we tuck it away, tags and all into some corner of a dark drawer knowing full well that it will never again see the light of day.  I absolutely HATE swimming suit shopping.

So, I'm proposing that we open a new sort of bathing suit store.  First of all, bikinis will not be allowed and anyone who walks in and asks for any size that does not include at least two digits will immediately be punched in the face as they are escorted back out the door.  There will be a rack for the "new mommy", one for the "mommy to be", and of course one for the "mother of 4 or more."  This rack will only contain those swimsuits with a girdle sewn into the bottom, and stainless steel cups to hold the girls in place. You see, when 4 kids have been hanging off of them for the past 8 years, regular underwire just doesn't cut it.   This new store would NOT have any mirrors.  No one actually wants any mirrors around when they're trying on a bathing suit anyway, and if they do they have probably already been punched in the face.  And, there would be no need for self-loathing and promises to oneself that when you get home you will begin a strict crash diet.  In fact, this store would give you a free donut with every purchase.  That's right you single digit, swimsuit wearing wenches...bet you wish you'd asked for at least a 10 right now, don't you?

Yeah, that would be nice.  But, since it doesn't exist I will just stick to swimming with the short people in my house.  They don't judge me when I walk down the stairs in my purple (seemed like a good idea at the time, but now sort of resembles a certain dinosaur that I'd rather not mention) full body suit/tent.  They're just happy that I'm playing with them.  They don't care that there are a few more curves than last year.  And really, they shouldn't have a problem with it because it's totally their fault that they are there in the first place.  I still hate putting it on, and I still sort of walk/run to the pool and get in as quickly as possible.  But, it's easier to take when your 4 year old looks at you with all of her baby honesty and says, "Oh, Mommy, I LOVE your bikini."

Monday, July 11, 2011

Finders Keepers

I have a theory.  My thought is that there is a direct link between increased amounts of testosterone and not being able to find ANYTHING that isn't surgically attached to your body.  Obviously, men have this issue but I'm also convinced that all children are born with a little more testosterone than needed and eventually the females just replace it with estrogen.  At that time, they seem to be a little more adept at locating things.  I swear if the "lost" item isn't IN my husband's hand, he simply cannot find it. For example:

Jeff:  Do you know where my shoes are?

Me:  Did you look in your closet where we keep YOUR shoes?

Jeff:  No.

Me:  Oh, I see.  They weren't on your feet, so therefore they have magically disappeared.

Kids are no better.  The worst part about kids is that they KNOW that Daddy can't find anything either, so even if they are sitting right next to him, they will get up and walk a mile and a half to find me and ask me to find the lost item.  We have a rule that you are not allowed to ask mommy where something is until you have actively looked for it.  This does NOT include standing in one place and complaining that said item hasn't appeared in your outstretched hand.

My husband has his daily misplaced items which always include the keys to his car.  And that is a serious problem because he already lost the extra sets of keys to BOTH of our vehicles.  We do have an actual key holder right inside our front door, but putting them there would just be too sensible.  We must ALWAYS throw them haphazardly on some surface that the children are guaranteed to touch, and it can never be the same surface because then we would know where they are the next time we need them!  He also has his chronically misplaced items.  The man has had approximately 27 different pairs of sunglasses since I met him.  I've had three.  However, I believe the most ridiculous example of his, "I can't remember where my own ass is" moment was just recently.

We had just watched our oldest son win his championship baseball game.  He was so excited, and decided to talk to a few of his friends after the game.  I told Jeff that I was going home with my mom so that I could feed our youngest son before she and I left for a short trip to Springfield.  He arrived at Mom's a few minutes after we did, and sat down on the couch to use the computer.  After a few minutes, my Dad asked what our 4-year-old daughter, Morgan, was doing.  I looked at Jeff for the answer and he sort of just sat there for a second and then his eyes grew wide.  I SCREAMED at him to, "GO GET HER!!!"  He jumped up off the couch and sprinted for the door.  He had LEFT her at the ball field!!!!!

That's not the best part.  When he came back, he tried to blame ME for not TELLING him to get her.  Oh, right, jackass.  I forgot to tell you that we still have FOUR children.  Wait, did you also know that in order to continue living you have to breathe in AND out?  I mean, if these are the kinds of things I have to tell you then we may have a problem!  Of course Morgan was fine because she can make friends with a grasshopper if need be, and in fact she didn't even know we were gone.  When I asked her if she was scared, she told me some story about her flip-flop not staying on her foot. 

I'm not saying that I've never lost anything.  I've had four children, so my brain is mush.  What I do have is the ability to LOOK for things that are "lost."  Although, I guess if my theory is correct then he really can't help it. It's just the testosterone at work. So, fine...as if the female body doesn't have enough going on, I suppose we must come to terms with the fact that the uterus is also a  tracking device.

Thursday, July 7, 2011

Do these pants make my feet look big?

So I was in the bathroom doing my make-up, and my four-year-old daughter came in and started telling me a story.  (This, by the way, is the rule.  If Mommy is in the bathroom for ANY REASON AT ALL, someone under 4 foot is absolutely REQUIRED to join her.)  I have no idea what she was talking about, but I do remember that she was playing on the bathroom scale.  I happen to remember that detail because she paused, mid-sentence, as only 4-year-old children can and said, "Someday when I'm a big girl that number on here will go all the way to the top!! Then I'll be in the big numbers!  Just like you, Mommy!  You get to be in the REALLY BIG numbers!" Thanks kid, you're out of the will.

I thought about her comment for a moment.  First of all, why in the hell do women even OWN scales.  Seriously, we should never EVER purchase such a thing.  It's worse than a medieval torture device.  And secondly, at what point do we stop wanting to be in the "big numbers?"  I mean, the girl was rather devastated that the number wasn't going any higher and I can recall a time just last week when I decided to piss myself off by standing on the damn thing and thinking that it was most likely broken (as has been the case with every scale I've stepped on in the last 8 years.)  They just don't make things like they used to...

Anyway, I think I'm going to take a different approach to this "weight loss" thing.  I'm gonna take cues from my four-year-old.  It just makes sense.  She is beautiful, completely satisfied with the body she was given, AND she eats chocolate ice cream like it's her last meal.  The point is, I think in order to be successful at this I'm going to need to like myself FIRST.  As difficult as that may be, I'm pretty sure I've got the world's best teacher.  Just today she found a new swimming suit in her dresser, took it out, looked it over once and said, "I'm going to look SO cute in this."  With that kind of attitude, how could I possibly go wrong?

While in the bathroom with my daughter, I decided to make it a learning experience, as I often find myself doing for whatever reason.  It's probably just because I'm a mom, and I try to "teach" when possible.  As is often the case, there was definitely a lesson involved but I'll let you decide which one of us was the teacher. The conversation went something like this:

Mommy:  "Morgan, can you tell me what number is on there?  How much do you weigh?"

Morgan: "Well, I don't really know how much I weigh...but my feet weigh 40 pounds."

And this is why my 4-year-old is a genius.

Friday, June 24, 2011

Kanine Kabob

I'm an animal lover.  Well, ok maybe not an animal LOVER so to speak, but I don't drown kittens or anything.  I like seeing them occasionally, and I'll pet them if they happen to wander my way. We even had a dog that I loved very much, but that was before we had children to raise.  We made sure she went to a great home and I shed a tear or two when she left, so I think that qualifies as AT LEAST "animal enthusiast."   I mean, I have seen Marley and Me twice so that pretty much makes me the freakin' president of PETA, right?

Well, I may have to resign my position due to a little experience with a certain pooch who may or may not live through the next 24 hours.  You see, I've had sort of a "rough" patch in my life lately.  As in, I haven't slept in approximately a year and a half, my youngest son sent me on the roller coaster of my life, and I had to stop the one exercise I happened to like because you have to be at least coherent during daytime hours in order to go for a run.  The combination of all of the above have put me in, let's just say, a LESS than chipper mood. 

However, for whatever reason my son FINALLY decided that he was going to sleep an entire night. That, coupled with the fact that I have recently allowed myself to actually close my eyes when I hit the pillow, made me think that maybe, just maybe, I might get some adequate sleep.  And I would have.  If it weren't for one teensy little problem.  At approximately 4 am, one of my neighbors thought that it would be ok to let their dog outside.  That would have been fine if the dog had done his business and gone back in for the night. This, however, was not the case.  The damn thing began to bark and did so, unceasingly, until 7:30 am.

The first 30 seconds of the doggie serenade made me feel bad for the poor guy.  He just wanted to go back inside.  See?...animal lover!  But, yeah, that didn't last long.  I sort of immediately began plotting his slow and painful death.  Like maybe a little trip down to the river, for perhaps a sort of eternal game of "fetch."  (Don't get all self-righteous and huffy with me.  Like you haven't thought about such things at 4 am.)  So anyway, as I'm seething beneath the covers I look over at the clock and realize that this lovely creature has now kept me awake for 2 hours.  At this point, my genius husband begins to stir and realizes that perhaps there is something disturbing his beauty sleep.  I watch him clumsily head for the windows and close them.  Then he comes back to the bed, notices that I'm awake, and starts to move his mouth.  I stare at him in warning, so as to telepathically prevent him from asking the stupid question that I know is coming.  Of course, he misses this message and says, "Do you hear that dog?"  No, not at all.  Dog?  What dog?  Oh, you mean that incessant noise coming from the demonic flea bag outside the window?  I may have noticed it.

I'm guessing I'm going to have a little conversation today about maybe NOT leaving the dog outside all night.  I think if I present my case in a level-headed, calm manner, they will see things my way.  And if not, tonight it's Shish-Kadoggie.

Monday, June 13, 2011

What A Difference A Day Makes

We've all said it, "I just wish there were more hours in the day."  I'm guilty of saying it myself, but I now know that a lot can happen in 24 hours.  In the time it takes for the earth to make one rotation, lives can be changed forever.  It happens to be exactly the amount of time that it took for my youngest son, Easton, to go from being a happy, healthy baby boy, to suddenly becoming a shell of his former self as a massive seizure claimed his body. 

Adrenaline, pain, and fear of the unknown forced me to not only be awake for the full 24 hours, but also to be extremely hyper-vigilant. It was physically and mentally exhausting.  I asked so many questions, cried so many tears, and although it was the most horrific day of my life it eventually gave way to the most beautiful 24 hours I have ever experienced.

During our first couple of weeks at the hospital, we had tunnel vision.  We were concerned about one thing, and one thing only...the well-being of our son.  Eventually things began to look more promising and gave way to thoughts of mounting hospital bills, ongoing care possibilities, and most importantly regaining a sense of safety and security for our family.   Would we ever be able to recover from such a tragic event both emotionally and financially?  Had we managed to create any kind of  financial safety net for ourselves?   We were obviously going to do whatever was necessary to bring our son back to us, even if that meant we would have to fight little battles for the rest of our lives.  But, little did we know that back home, people had waged a war against our pain.  We didn't come home to a few soldiers shouldering all of the burden.  We had an army.

What began as a couple of people throwing out ideas to help raise funds, became a community working together to uplift and restore our little family.  A benefit was held in honor of our son, and was centered around a walk-a-thon in which hundreds of people signed up, donated money, and walked a specified amount of time.  The entire 24 hours was covered by at least one walker.  People made sure that not even a second went by without someone walking.  The symbolism of our friends and family coming together to each take a portion of our son's pain brought tears to my eyes all day long.  My husband was there for the first steps, and I was fortunate enough to be there for the last.  All along the way, we were accompanied by selfless, loving people who didn't give a second thought to donating their time.

The benefit was organized by a small group of women and men, and it ran like a well-oiled machine.  But, I know that each of them would tell you that it was due to the fact that so many people offered time, money, and donations of all kinds.  Every person that said they would be there, showed up.  Every person that said they would bake something, went above and beyond bringing in some of the most creative and delicious goods I've ever seen.  Every person that signed up to walk, brought their walking shoes and made it count. Needless to say, the benefit was a huge success.  It surpassed every person's expectations.  We will no longer worry about how to provide for our medical bills.  Our friends and family have made it possible for us to focus 100% of our attention on Easton's recovery.


Small towns can have their own issues, including silly arguments and taking sides.  But, on June 11, 2011 the walls came down. The barriers were broken, and friends and foes alike came together for a common cause. Like I said, a lot can happen in 24 hours.  I have never been more proud of my roots. The communities of Payson and Quincy, IL have proven that big city lights and big city attractions could never compare to a small town heart.

Wednesday, June 1, 2011

Be A Nurse

I. Am. A. Nurse.  Actually you could probably classify me as one of those annoying people  who knew from a very young age, exactly what I wanted to do with my life.  I can remember being as young as 5, playing with dolls and acting like I was their nurse.  I loved "taking care" of people, animals, rocks...you name it.  I know there were a few points along the way that I thought about other possible careers, but ultimately I never wavered from my original goal.

My Aunt Joanie is a nurse, and I remember overhearing her talk about her job.  I was fascinated by the stories she told, and always admired her confidence.  I WANTED that.  I needed to feel like I was making a difference too.  And that's exactly what nursing is...making a difference, no matter how small, in the life of another person.  I couldn't wait to get that RN behind my name.

I took sort of a non-traditional path to finding the right college for myself (my Dad loves that about me!) but I eventually ended up at Blessing-Rieman College of Nursing (BRCN) in Quincy.  Sometimes when you live in the same place your whole life you have the assumption that other cities will have "better" things to offer in the way of education.  However, BRCN is a nationally recognized school and more importantly does a great job of giving their students a solid foundation on which to build a successful career.  I'm glad that I had the opportunity to experience it.

Having said that, I only worked as an RN for a few years before deciding to be a stay-at-home mom.  I've definitely had moments where I miss nursing so badly that I give serious consideration to going back at least part-time.  However, I also have moments when I think that maybe I'll choose a different career path altogether.  It's moments like these that I've questioned becoming a nurse.  It's not that I didn't like the job.  Actually, I LOVED my job as a labor nurse.  There is something truly magical about being in the room with a woman as she gives birth to her child.  I could never describe it in words.  But, I think at some point during my years of staying at home, I wondered if I'd made a mistake in getting my degree and then only actually using it for a few years. (This of course doesn't count the calls from friends/family members asking their nursing questions!:) 

My recent life experiences have forced me to be several things at once.  At times, I'm Mom, Wife, Daughter, Sister, and Friend. While my son's illness certainly saw my "Mommy" hat, I also felt compelled to slap that nursing cap back on my head.  I knew what medications were being given, when they were to be administered, and I always asked why they were being given.  I knew side effects and half-life of each drug. I asked all KINDS of questions about his care, and offered my help when they would allow me to do so.  When we came home, I flushed his broviac line daily and performed sterile dressing changes as needed.  But  more importantly than my physical capabilities as a nurse, was my ability to use my critical thinking during the whole process.  I say these things not to brag about how great I am, but to express how truly grateful I have become for my education.

I had a bit of a disagreement with a resident about taking Easton's central line out of his leg.  The resident told the nurse to pull it, but I told him no.  I'm sure that wasn't exactly what he was expecting, but I knew that although infection is a risk with a central line, having access for the remainder of the anti-viral medication was higher on the priority list.  He argued that we had another access point in a peripheral vein.  But, again my experience told me that a 24 gauge IV in the foot of an 11-month old is not likely to make it for 12 minutes, let alone 12 more days!!  I agreed that he could remove the central line, but only AFTER he was successful in getting a more reliable access somewhere else.

In May of 2004, I graduated with my BSN.  Blessing-Rieman College of Nursing did a great job providing me with  the "who", "what", "when", "where", and "how" of becoming a nurse.  Seven years later, my son taught me "why."

Saturday, May 28, 2011

I Will Never Forget

As I sit here in the comfort of my living room, on a lazy Saturday afternoon, I get to watch my kids play in the rain.  I get to see them move on their own, with smiles on their faces, and toys in their hands.  I get to help them with the "problems" in their day...an untied shoe, a dropped sucker, a scraped knee.  I  now know the importance of being able to "fix" such things for your children.  And, I know that a day will come again when I will take the simple act of brushing my daughter's hair for granted.  But, right now, in this moment I have not forgotten that there is another world of parenting out there.  A place where parents don't have the answers and kisses don't fix boo boos. 

Living in a hospital full of sick children is sort of like living in a parallel universe.  You know in your head that somewhere out there parents aren't spending their days watching heart monitors and respiratory rates.  You know that the biggest obstacles for the day are running to and from grocery stores and ballgames.  But, it becomes extremely hard to remember that when you run into parent after parent with strain in their faces, slumped shoulders, and dark circles under their eyes.  Everytime you think that your day couldn't get any worse you get into the elevator with a mother who has been there longer, a father whose daughter used to be an athlete and now lays motionless in a shell of her former self.  It's heartbreaking and emotionally draining.  It physically pulls you closer to the ground.  You can actually feel the pain in the middle of your chest, and you ask again, "Why?"

I met two families in my stay at the children's hospital, and we shared several of those "been there" moments.  The difference is that I sit here at home while my baby progresses, and neither of them got to bring their children home.  Mothers here in my hometown discuss which teachers their children will have next year, but in that other world, my new friend/familiar stranger tells me how she plans to hold her baby as he leaves the world.  And people called ME strong?  You don't get that kind of strength by choice.  You get it because there is no other alternative. 

I'm not strong, and at times I even felt like a coward.  When my baby was struggling the most, and things were the most scary I stood at the foot of the bed and stared.  The doctor asked if I wanted to stand up next to him and hold his hand, and I remember thinking, "I should WANT to shouldn't I?  I should want to be there for him and touch him during this scary time."  But there comes a point where you are sure that you absolutely cannot take another second.  It is difficult for me to share these things because I'm ashamed of those moments.  Did I walk up next to him and take his hand?  Of course I did, but it wasn't because of strength.  It was because the alternative wasn't an option.  These are the moments that I remembered all of those people who were praying for us.  I recalled the encouraging words of our friends and family members, and I let THEM hold ME up.

For whatever reason, our current outcome is a good one.  It's difficult, but ultimately positive.  I do not take that for granted.  I know how lucky I am to be able to even share these thoughts with others.  We will continue to take steps forward.  We will continue to be fearful of falling back, but will celebrate the little victories along the way.  But, no matter how far forward we go, I will not forget the place from which we have come.  I will not forget the families who mourn losses, or the ones who continue to fight that impossible battle.  I promise today and everyday, that Kailey and baby Noah will not be forgotten.

Thursday, May 26, 2011

The Seventh Sign

So, I don't really even know where to start with this latest debacle in the Zanger family saga.  I guess the beginning is as good as any other place.  Everything I write about in this post was very serious and quite scary at times, but I have a feeling that it will take on a more humorous appearance, simply because all I can do now is laugh at the absolute ridiculousness of my life.

Jeff and I headed to St. Louis yesterday for Easton's appointment with neurosurgery and for a blood draw.  The first minor issue we had was that we left early enough to do the blood draw first, and waited in the crowded waiting room for about 20 minutes only to find out that they don't draw blood from broviac lines in the outpatient lab.  So, basically we sat in a room full of other germ-carriers (as this is now how I see human beings) only to be sent away.  We then went to our appointment with neurosurgery and decided to deal with the blood draw later.  When we got to the office, the doctor informed us that although he did see a malformation, it wasn't bad enough that he needed to put a shunt in his head at this time.  To which we replied, "Oh, that's good."  But, inside we were both thinking, "What the hell are you talking about????  We hadn't even considered that!"   After the appointment, a nurse was kind enough to come down and draw his blood from the broviac even though he wasn't her patient. (By the way, STL Children's is AMAZING)

Oddly enough these were NOT the most unfortunate events of the day.  If you live anywhere near the midwest, you can probably guess what was in store for us next.  We left St. Louis and drove directly into the heart of the worst storms I've ever seen in my entire life.  There were tornado warnings in absolutely every single county in MO, and I swear we drove through every one of them.  We eventually just decided to go into a Super 8 motel in Bowling Green and ask if we could come in for awhile.  This was not a case of "no room at the inn."  Those people welcomed us in, brought us blankets, and offered hot chocolate and coffee.  It was incredible.  They even reserved the bathroom for us because we were traveling with a baby and it was considered the safest place to be when the tornado came through.  I was seriously in awe of these people.

But, you really know you're screwed when you pull up to a motel and 10 people are staring out the window.  And, THEN you go into the "safe" room and an old hispanic woman is mumbling in the corner and you realize that she's saying a ROSARY!!  Yep, I figured it was the end.  Although, I felt pretty good about the woman being old, because I figured if she was the one praying we were probably getting the best direct line to the Big Guy. I can understand why she felt it necessary to whip out the big guns because these were some SERIOUS storms.  I'm not talking about a  "this will be fun, let's pretend we're Dorothy," kind of storm.  We're talking more of a "grab those ruby slippers and HAUL your ASS out of Kansas" kind of thing.  Of course, I'm freaking out the entire time that my son is going to start seizing in this motel, in the middle of tornado weather.  Luckily I did remember to bring his rescue medications in from the van and was ready to administer them at any second.  He, however, was much less concerned about the whole situation and SLEPT through the entire thing.  Apparently once you've been in a coma, tornadoes are sort of child's play.

Oh yeah, by the way, I forgot to mention that when we were driving through the storm before we stopped at the hotel, I began shaking violently.  Because I got FREAKIN' MASTITIS on the way home!!  Are you kidding me, right now?  If you've never experienced mastitis, it is an infection in your breast that is associated with breastfeeding.  The symptoms are a large knot in your breast that is extremely painful to touch and is warm and red.  You ALSO experience fever, fatigue, and chills that seriously should be called convulsions.  I couldn't even hold the hot chocolate I was trying to drink.  At this point all I could think of was the movie the Seventh Sign.  It's the one with Demi Moore, and she's pregnant with what may potentially be satan and as she nears her due date all of these insane things start happening in the world.  The line from the movie that kept playing over and over in my head was, "Will you die for him?"  I looked at Easton sleeping peacefully in his carseat and thought, "And today is your FREAKING birthday.  Is this some sort of sign?  I mean, seriously how much more can a person take?  So, I just looked up at the sky and said, "Dude, I'm pretty sure I've answered the 'will you die for him?' question several times in the past month.  Can we knock it off with boom booming, the funky looking clouds, and the exploding boob?"

Tuesday, May 24, 2011

Home

We.  Are.  Home.  Last night we pulled into our driveway just as we have done a million times before, but this time it was different.  I got out of the car, opened the back door and pulled my baby out of his carseat.  I stood there in that driveway and held him for a moment.  Tears ran down my face as I realized that at one time during all of the chaos, I had considered the fact that this moment may never happen.  I looked around at all of the familiar houses.  I enjoyed the cool, still evening.  I breathed in the smell of the lilac bush at the neighbor's house.  I resisted the sudden urge to return to my running regimen right then, because as soon as my feet hit the familir pavement, I was ready to go.

I finally came into the house and began crying again at the sight of my children's bookbags sitting on the floor.  Bookbags have never meant so much to me, but in that moment they represented two healthy, extremely capable children who have completed the end of their school year without my help.  I LOVED seeing the toys all over the ground because it means that my children were happy and playing.  They didn't have to think about what muscles to use when reaching for a toy.  They didn't have to concentrate on the fact that they were in a sitting position. These things that I had never even given a second thought a month ago, are now precious gifts.

We were terrified when we walked through the door.  And, we are still scared today.  But, somehow all of the normal tasks of a day make life so much more bearable.  I had to comb my daughter's hair this morning.  I had to shower (in my own bathroom!).  Easton seems to be more comfortable too, and even rolled over today which is a skill that we'd been working on in the hospital but could never quite master.

We didn't have to prepare any meals.  People continue to bring food and monetary donations.  I didn't realize how great the meals would be.  But, when you are so focused on watching every move your baby makes all day long, the last thing you think of is what kind of meal to prepare.  Luckily, we've got more support than any two people deserve.

I don't understand why all of it happened, and I still don't have any acceptable answers.  But, I can now see some of the beauty that has come from such pain and frustration. People who have never met are working together to create a sort of bubble of protection and giving around my family.  Children are bringing their piggy banks to school and emptying the contents in support of my son.  They are setting up their lemonade stands and advertising that all proceeds go to Easton Superman Zanger! And, we have learned to appreciate the "small stuff."  I LOVE the mess in my house.  I LOVE the smell of lilacs.  And I LOVE the familiar faces of my hometown.

Friday, May 20, 2011

Spoiled Rotten

I've always considered myself a sort of "tow the line" kind of mom.  I really do expect my children to behave in public and to be respectful, caring citizens.  I was the mom whose kids eyes would light up like it was Christmas when they got to have soda.  They know that we go to Wal-mart to buy things we need, not toys for them and they are ok with that.  However, this is the mom that I was BEFORE my world came tumbling down.  I have a feeling that things may change a little when I get back home.  I may give a whole new meaning to the word "spoiled."  Easton makes one little whimper and I pick him up immediately.  So, I'm just going to apologize right now for how absolutely ROTTEN this child is going to be.

I imagine myself using this experience as leverage several years down the road:

Teenage Easton:  "But, Mom, I just can't.  I'm so tired!"

Me:  "Oh, really son?  You can seize for 24 hours straight, be in a coma for 5 days, re-learn how to sit, talk, walk, etc....but taking out the garbage is just too much for you?"

Each good day we have brings more of these thoughts.  I imagine dealing with an incredibly spoiled, entitled,  'pain in the butt' child for years to come.  And each time I have that thought it is immediately followed by, "I pray to God that I get the chance to be that miserable."

Wednesday, May 18, 2011

Thank You, Merci, Gracias

How do you say "thank you"?  How do you tell the people around you that without their love and support, you would not have been able to continue breathing?  How do you make someone realize that your very existence is solely dependent on the fact that when you needed them, they were there?

My family has experienced tragedy, but I have a feeling if you take a look around Payson and Quincy, IL right now, it is not sadness that you would see.  It is strength, determination,  love, and devotion.  You would see complete strangers rallying around one another to lift up one broken little family.  You would see smiles as they read of the progress that our little superhero is making.  

Can you tell me what love looks like?  Many of us have been fortunate enough to feel it's effects, but I'm telling you that I have SEEN it.  It comes in the form of prayer and encouragement through text message, email, or facebook.  It takes the shape of a Superman shirt that covers the backs of so many kind people.  It walks for 24 hours straight in recognition of the struggle and suffering of one little boy.  It takes the shape of a friend who sets aside her own life for awhile and sits at the bedside, comforting a breaking mother.  It's family members pulling together to support and attempt to continue some sort of normalcy for our other children.  It's women leaving their own homes to come and clean ours so that we don't have to worry about such things.  It's care packages brought by several friends with everything we could ever want or need.  It's answering the phone and knowing that there is nothing you can say to make it better, but just listening as I scream and cry and tell you that I can't take it anymore.   It's smiling through tears as I tell you that we have made progress.

I could never even come close to thanking every person that has had a hand in making this nightmare bearable.  I can't quite wrap my head around the enormity of the situation back home.  What I can say is that I am extremely proud that I come from a place full of such big hearts.   I can say that through all of this chaos and pain, you have all played a part in allowing me to smile again.  Thank you from the bottom of my broken, but healing heart.

Tuesday, May 17, 2011

April 29th

On April 29th I got up and got the kids ready for school.  I went through all the motions of being  mother of four without paying attention to what  I was doing. I spent the day helping out with my nieces because my sister and her husband were out of town.  On April 29th, I had ice cream with all 7 babies.  My four children, three nieces, Jeff and myself walked to the nearest gas station and got cones as a special treat.  We had just been playing ball in the backyard.  On April 29th, the weather was nice.  The sun was out and there was a slight breeze. But, I didn't even notice.  On April 29th, I nursed my baby just like every other night before that, and was completely unaware of the fact that it may indeed have been the last time.

On April 29th, I still lived in my own house.  I was lucky enough to be frustrated with the fact that it was never clean enough.  I still got to read to my babies and kiss them goodnight before bed, and I took it for granted.  On April 29th, I had the luxury of complaining that the baby kept me up late at night.  I climbed into my own bed, in my own pajamas, and turned the light off in my own room.  I didn't take notice because it was just my life.  But that was on April 29th.

Somehow between the evening of April 29th and the wee hours of the morning on April 30th, everything changed.  My house is no longer the one in which I had been complaining about.  It's an institution with hundreds of other weary parents.  But for some of them, April 29th was February 5th or even October 3rd.  My bed is no longer the one that I share with my husband, but a pull-out vinyl chair.  I don't play ball in the backyard anymore, or go on leisure walks for ice cream.  Instead the games I play all have the very specific goal of bringing my baby out of his current prison.  I don't get to kiss my babies goodnight.  I call them on a cell phone from 2 hours away and sing the songs that I've been singing to them since they were infants.  I hear them cry on the other end of the line begging me to come home.  I tried to nurse my baby just like I all of those times I had taken for granted, but he doesn't remember how and he may never do it again.  I may have experienced my last feeding without even knowing it.  I now pump the milk out and pour it down his throat because he's lost the ability to suck and swallow.

I know that I can't change all that has happened.  I know that I couldn't have done anything differently to have erased the virus that took our lives from us.  But if I had the opportunity to go back in time, and if I could take what I've learned and change just one thing about all that has happened...on April 29th, I would notice.

Sunday, May 15, 2011

Anger is a Feeling Too

I blog to get my frustrations down and out of my head.  It helps to see them in print.  It's comforting and therapeutic.  But, I've found lately that what is coming out is all of the sentimental and sad parts of this ordeal.  In the spirit of true honesty, I feel that I need to write about the other component.  ANGER.  I'm not always so sweet and strong and loving...etc.  Sometimes I'm so pissed I can't see straight.

I ask 'why' almost every single minute of the day.  I see kids being pulled around the garden of the hospital in wagons.  They are pointing to flowers and smiling, and it makes me angry.  I don't understand why it's us and not them.  My niece was sick the same time Easton was, and it was most likely the same virus but she is fine and here we sit in this Hell.  Do I want other people's children to be sick??  Of course not.  And I love my niece, but that doesn't mean that I don't ask why.  Does that make me a bad person?  I don't know, but I'm willing to admit it as truth.  I hate it when a nurse comes in and talks about her kids at home.  She smiles and tells me some cute little story about her youngest getting into trouble, and it makes me WANT TO SCREAM!!!!  I want to yell, "DON'T YOU GET THAT IT COULD HAVE JUST AS EASILY BEEN YOU?!?!!?"  They've done countless tests, and have discovered that Easton doesn't have any immunodeficiencies.  There is absolutely no reason that it's him and NOT the little boy that I saw eating french fries in the cafeteria and watching the fish swim around.  So WHY??  WHY us?  WHY him? 

I also can't handle people telling me that they know how I must feel because they are mothers.  Being a mother does not make you know what this is like.  And telling me that your kid has been in the hospital before is probably not the best idea either.  We aren't talking about needing a little oxygen or being dehydrated and needing fluids.  That's sort of the "tball" of child hospitalizations.  We are in the BIGS.  I know people don't know what to say, and they are trying to make me feel better.  I so appreciate the love and support of all of those surrounding me, that's why I feel it necessary to forewarn anyone who may have the unfortunate chance of talking to me anytime in the near future.

This is the not-so-pretty side, but it's still real.  It's there, always lurking below the surface.  Sometimes it's more than I can handle and it comes out in the form of hatred.  I don't like this part of myself, but I also can't control it.  I feel everything on a supercharged level now, and that includes anger.

A Letter to My Baby

Easton,

Before I had you, I was already a busy mom of three young children. I, like most overworked mommies, was getting pretty good at complaining about the everyday "annoyances" and frustrations that plague every young mother. Then I became pregnant. Your Dad and I were immediately thinking about the expansion of our family. Would our house be big enough? Would we be able to handle four small children? We began to get very excited at the prospect of expanding our family. And then, eleven weeks later I miscarried. It was one of the hardest things we had ever faced. Bad things didn't happen to us. We were still naive enough to believe that we were somehow exempt from experiencing the unthinkable. It was a long and grueling process but we leaned on each other until the hurt became more bearable.

A year and a half later, we were setting up for your brother Logan's 6th birthday party and I didn't feel very good. I went to the doctor for some medicine and was totally shocked when the doctor said, "We have some other results from the tests that we ran. You are pregnant." Although the initial response was that joy of being a mother, I immediately put up my defenses because I couldn't bear the thought of enduring that kind of pain again. It took a lot of convincing by the doctors, but I was finally able to give myself permission to hope. Your pregnancy was very different from the others, simply because now I had experienced the pain of loss. I did everything I could to ensure your safe arrival. I still believed that I could control such things. I was diagnosed as a gestational diabetic and that meant giving up my normal diet, but that seemed such a small price to pay, considering it would mean bringing you safely to my arms.

You were born on May 25, 2010, at 8:32 a.m. You weighed 7 pounds 14 oz., and you were 20 inches long. My smallest baby by far, but no less beautiful and no less perfect.  At first we thought you looked just like Daddy, but as you grow you resemble Mommy and Morgan.  We've had our ups and downs with illness.  You had several ear infections and some issues with possible asthma.  At the time we thought we were really dealing with something difficult.  We had our share of "sleepless" nights and moments of frustration.  But, we also love every minute we get to spend with you.

You are such a silly baby.  You can be content for long periods of time simply playing by yourself, but when you decided that you want Mommy your patience becomes quite thin.  You scrunch up your face and sort of whine when I pass until I pick you up.  You LOVE ice cream, and you become very angry when someone has it and doesn't share with you.  You love to watch Curious Buddies and Brainy Baby.  In fact, if we happen to get in your way, you will maneuver yourself around us until you can see it again.

You have taught me so much as a mother.  I always knew that I loved my children with a passion that I could never express, but now that love has been tested and I've seen a glimpse of just how far it goes.  During your hospital stay I have laughed and cried, smiled and screamed.  I have BEGGED and PLEADED with anyone who will listen, asking them to tell me how to take your place.  I want to crawl into that bed and take over your suffering just so that you can get up and play peek-a-boo with Daddy.  I want your brother and sisters to be annoyed when you crawl over and mess up their game.  I want you to get dirty and get into trouble.  I want you to learn.  I want you to find love.  I want you to LIVE.  I don't know why they won't let me trade places with you.  It's ok if I never get to leave this hospital as long as you live the life you deserve.

It's terrifying to love someone this much.  It hurts so badly sometimes that I can't breathe.  But then there are those moments when no one else is in the room, and I turn on some music and hold you against my chest.  I sing to you and you look up at me.  I swear in that moment that I can see my little boy.  You're in there somewhere, and I promise you that I will be here when you come back.  I will endure the heartache and the setbacks just so that I can see that tiniest step forward.   You have a strength that defies logic, and you are teaching me everyday.  I am your Mommy, and I will be here every step of the way.