“My Life Turned Upside Down”, cont’d

So back to the hospital we went, not ever knowing what to expect when we got there.  A constant state of unknown.  Not a good place for a control type person like myself.  By the time we arrived, they had finished an array of testing including the spinal tap.  They explained to us that they were ruling out some possible causes for my daughter’s decline, internal bleeding, meningitis, and so many more that I can’t even remember.  What they did know at this point was that after carefully examining smears of her blood, she had distorted and irregular shaped red blood cells causing the anemia.  Without getting too technical, basically the spleen acts as a “filter”, treating these cells as abnormal or old and breaks them down, causing the red blood cell count to drop.  Since red blood cells carry oxygen through the body it also drops oxygen saturation.  Frightning.

They explained that they would have to keep monitoring her counts closely, and that a blood transfusion may be needed.  There were two possible causes of this condition;  Infantile Pyknocytosis which is a rare form of hemolytic anemia in newborns.  The cause of this condition is unknown, and usually resolves on it’s own around 4-6 months of age.  Or, Spherocytosis, a more serious  life-long disease of the blood, in which red blood cells are shaped like spheres causing anemia, and at times requiring transfusions.  It would take a year for us to get the final diagnosis of Infantile Pyknocytosis.  A very long year.

In the meantime, my husband and I underwent genetic testing, and keeping vigil at the hospital.  After a few days, she did indeed need to have a blood transfusion.  Of course my worries multiplied with this news, even though I knew she needed it to survive.  What if she contracted something from the blood?  We’ve all seen the sad stories on T.V.  My head was a constant tornado of scenarios and “what if’s?”.  I again had to place my trust, and my daughter, in the hands of her re-assuring team of doctors.  That’s right, I said team.  This condition brought so many doctors to look at her case, not to mention the crowd of students and interns that usually followed them.  All asking questions, wanting to learn.

She received the transfusion, and started to improve dramatically.  She “pinked” up, and was getting stronger.  Now we had to wait and see if her new batch of red blood cells level would stabilize.  After a week, we were headed home.  I was elated and almost paralized with fear at the same time.  Even though I hated leaving her in the hospital every day, at least I knew if anything happened, she was there, with the best nurses and doctors at her side the second she needed anything.  She was hooked to monitors telling you at a glance what her heart rate, and oxygen levels were.  How would I know all of this at home?  How would I be able to sleep without worrying that something would happen while she was sleeping.  Fear, fear fear.  The symptoms that I was told to look out for didn’t help ease my fear at all.  I had to watch her to see if she started to seem lethargic and sleepy.  Aren’t all newborns sleepy?!?!  Check the whites of her eyes for yellowing, again, not easy on a newborn.  Check fingernails and palms of the hand for pinkness.  So tricky with a baby that isn’t able to communicate.  How was I going to do this?

We also had to go get her blood drawn regularly.  For the first few days, everyday.  Then every other, then once a week, etc.  Her little tiny heels had so many cuts in them.  You can still see the scars today.  I’m so grateful to one technician at the lab we went to.  Drawing blood from an infant is somewhat of an art, and she was the best.  So calm, and quick.  When she would see me coming, exhausted with my daughter and toddler son, she would drop what she was doing and help me.  If someone else working started to take us to the back, she would say, “It’s o.k., I got this one.”  And I would thank God every time I saw her face.  Then I would go back home and wait on pins and needles for the Doctor to call with the results.  Every day.

After only a few days at home, things seemed to be going o.k.  I was starting to get into the routine of it all.  Then, I got the call.  “We have your daughter’s blood count for today, and it seems she’s going to need a little more “hand-holding” than we thought.  She needs another transfusion right away.  Come back to the hospital and go to the emergency room.  We’ll work on getting her admitted.  Hopefully this will be the last one.”  All I could say was o.k.  I felt like I’d been hit by a truck again.  My son was calling for my attention, and the doctor was still on the line.  He was trying to keep me calm even though I wasn’t saying anything.  “Everything will be fine”  he kept saying.  Fine?!  How is everything going to be fine?  How did this happen without me noticing?  She didn’t seem to show any of the signs I was told to look out for.    We are headed back to the hospital.

I hung up the phone, and tried to concentrate, all the while my son is pulling at me, “Mommy, Mommy!”  My throat was hard, swallowing back tears as I called my husband at work.  He was on his way home immediatley.  My next call, my Mom of course.  She was at work as well.  Now the tears can’t be held back anymore, and all I remember saying to her was ” Mom, I’m so scared!  I’m so scared! We have to go back.  I’m so scared.”  I can’t even remember who came to take care of my son while we left.

The ride to the hospital was silent.  I sat in the back with my daughter, staring and quietly crying…again.  We arrived and went to the emergency room as directed.  Even though they knew we were coming, we wound up having to wait for 7 1/2 hours until they had a place for us. They were all very kind, but all I kept thinking is, my baby needs blood and we’re just sitting here!!  They finally put us back in the Neonatal Intensive Care Unit, for which I was grateful.  We knew all of the staff there already.  They were all surprised to see us again.  We stayed while she received the transfusion, it was very late at night and we didn’t leave until the early morning hours.  It was hard to leave her again, but we had to get home to my son.

Once she stabilized again, she was discharged.  Home again, and more of the same.  Blood draws, waiting for results, obsessive checking of her skin color, fingernails, eyes.  I would go into a silent panic anytime she seemed to sleep a little longer than her usual routine.  One morning, I couldn’t wake her up.  I tried to remain calm as I did everything I could think of to get her awake, diaper change, clothing change, everything.  I couldn’t get her to become alert, and she had even skipped a feeding.  We called the doctor right away and they sent us to our local hospital for blood work.  Her levels came back slightly low, but they weren’t concerned.  Turns out she was just having one of those sleepy infant days.   Day in and day out this was my life.  I don’t think I slept soundly at all in that first year of her life.  I spent many nights laying in bed staring into her bassinette.  I would reach in an touch her, just because.  I lived in a kind of daze most of the time.  My mind never really 100 % in the moment.  When the blood draws slowed down to once a month, and longer we would have to go back to C.H.O.P. to have it done.  They would take a little more than when her heel would be pricked, because they would also look at it under the microscope for abnormal cells.  I dreaded it.  Everytime we went, it took me right back to the time we spent there.  All the worries were fresh on the surface again.  Not to mention, they would draw from her arm now.  The technicians were wonderful, gifted people.  But, that doesn’t make it any easier to hold your screaming child still in your lap while they find a vein.  My husband was amazingly strong and positive through everything, but he came in the room with me the first time they did that, and he had to leave.  He never came in the room with me again.  It was too hard, especially the older she got.  She would be smiling and happy one minute, and then look at me screaming with an expression of “why Mommy?” on her little face.  She would try to turn and put her arms around my neck, but I had to hold her down to keep her arm still.  I would try to hum “You Are My Sunshine” in her ear to calm her.

I also have to mention that the Hematology department shared a floor with the Cancer department.  I can’t tell you how my heart ached seeing the other families there for blood tests, whose situations were so much more grave than ours.  What results would they be getting from their child’s blood work?  Heartbreaking.  My husband and I would come home completely wiped out.

As time went on it was looking more and more like it was resolving on it’s own.  A few weeks before her first birthday we finally got the official diagnosis of Infantile Pyknocytosis.  Hard to express what that day felt like.  Of course complete joy, but I have to say it was a cautious joy.  I wanted to hear that this would never re-occur, but I quickly learned that never is a word that doctors rarely use.  Since the cause of this condition is unknown, they won’t say that it will never happen again, believe me I tried to get them to say it.  What they did say is that they would be completely shocked to see a re-occurance, and that they hoped to never have to see her again.  But of course if we ever noticed any symptoms, we should have her checked.  There’s those pesky, vague symptoms again!  If you know me, you might still catch me looking at her fingers and eyes closely.  Whether this is just habit or something else, I don’t know, but I catch myself doing it.

The most important thing about this story is that my daughter is now a healthy, active little girl.  She’ll be five years old in two weeks.  Time seems to have gone by in the blink of an eye.  She is beautiful in every way.  She’s shy, but don’t let that fool you!  She is stronger and smarter than I’ll ever be, which I believe is what got her through that whole ordeal.  She was sent to me for a reason…many reasons, and she makes me a better person every day.  I am eternally grateful.

My hope is that by my sharing this, I may be able to help someone else who may be experiencing a similar situation.  Even if it’s only by acknowledging the multitude of emotions that one may experience in these types of situations, thereby validating them in some small way.  Sometimes you can only process them all after it’s  over.  I hope they are able to find their own peace.

I also have to mention how grateful I am to the amazing people in the nursing and medical field.  I don’t know how they do it on a daily basis, and I have the greatest respect and admiration for them all.  They are angels to me.  I made a promise to myself that someday when my children are a little older, I will go back to the hospital to volunteer.  It is a promise I am determined to keep.

This series of posts was difficult for me to write, but I’m so glad that I did.  I’ve given it all it’s own place.  Now, it’s time to move on, clear away the rest of the daze that was remaining and become truly present again.  Back to living, and soaking in every moment with my “little sunshine”!

“A Deafening Silence”

I have been wanting/needing to write about one of the most difficult times in my life for the past 5 years.  The time during which my daughter was seriously ill.  It feels like what I’ve heard described as post traumatic stress disorder.  For anyone that may read this and doesn’t know me, I’m so happy and grateful to report that my daughter is now a normal healthy 5-year-old, but the scars left behind for me are deep and in some ways not fully healed.  I’m hoping that purging these memories from my head and heart onto this blog will help to clear them away.  By giving them a place of their own, out of my head, I can then let them go and move on.  Needless to say, it’s been difficult to figure out where to begin.  So I’m just going to start.  These post will come in parts and pieces.  And maybe, just maybe my words will be a comfort to someone who may be going through something similar.

It’s 3 am, and my alarm is blaring.  I was already awake, not much sleeping going on these days.  I lay propped up on my couch and feel the burn of my c-section incision as I try to turn and get up.  The house is quiet, as my husband and 2-year-old son sleep soundly on the second floor.   The alarm was set you see, because my baby girl is not here to wake me for a feeding, and I need to pump.  She is in the Neonatal Intensive Care Unit, and I’m alone.  The silence is deafening.

I had her home with me for one short week before she became so ill and we had to take her to the hospital.  That is a post for another day.  But for one week I had her with me in my family room at 3 am, making those tiny sounds that an infant makes.  All of her things are around me.  Pink gingham blankets, diapers, nightgowns, binkies.  But she’s not here and the silence is deafening.

I gather up all of the gear for my pump.  I’m determined to keep up my production for when she’s well enough to nurse again.  The hospital is so supportive, and they feed her with my milk that I bring daily.  I believe so strongly in the health benefit of breast milk, and her doctors encourage me and help to make that belief even stronger.  I have never felt more helpless in my entire life, and this one thing gives me my only sense of contributing to her wellbeing.  I’ve been able to get through these pumping sessions most of the time without crying, but tonight it seems impossible.  I sit there with only the sound of the  rhythmic, moaning pump, and the tears begin to flow, and it seems that with the flow of tears comes the flow of milk.  I would gladly give my own life to make her better, and it seems there’s a strange symbiotic relationship between my sorrow and my abundant milk production.  It’s as if the more I give, the better her chances may be.  It’s what I hang on to anyway.   The sound of the pump is deafening.

I finish up and carefully prepare and label the bottles to take to the hospital.  And as I do after every pumping, I call the hospital just to check on her.  The nurses are so kind, and will speak to me as long as I need.  There are no changes.  I’m so grateful that she is in such good hands.  But they are not my hands.  I hang up the phone.  The silence is deafening.

I make it back to the couch and try to get comfortable to sleep.  It most likely will not happen, but I try.  The alarm is set again for the next session.  I lay there and remind myself that I am fortunate to be surrounded by my extremely supportive family and friends, and my ever-loving husband, and my darling son.  They would all do anything for me.  But they can’t give me what I need.

I need to hold my baby girl.  I need someone to tell me that she’s going to be o.k.  I need to know that I will have her home, in my arms again waking me at 3 am.  I need the doctors to tell me that they know what is wrong with her, and that they can help her.  But they can’t, they don’t know that yet.  They won’t say it.  And when I ask, the silence is deafening.

So I’m alone with the heavy thoughts in my head.  And tomorrow, I’ll spend the day at the hospital.  And I’ll pray that it will be the day that she is well enough for me to hold her.  And I’ll wake again to pump, alone, in silence.  It’s the only thing I can do.

“I’m Not Ready!”

Yesterday I registered my baby girl for kindergarten.  I actually got teary eyed and felt nauseous on the way there.  I know, I’m a little nuts but I really couldn’t help it!  She’s my last one, not to mention my shadow.  In fact she is a “mini me”.  It’s actually fascinating.  She is so much like me even in tiny details that it makes my husband just shake his head and laugh.  She wants to be an artist, a teacher, a mommy, and a chef with her own restaurant.  She loves to read books and the library, and I’m just waiting for when she begins to read and write for her to blurt out that she wants to be a writer too.  All the things I want to be when I “grow up”!  Her favorite color is yellow, which was my favorite color all through childhood, seriously, and I never told her that.  She’s very shy and observant, and smarter than I’ll ever be.  Most of all, she’s my little partner.  Already at the tender age of 4 1/2, she’s already my friend.

I guess my sadness comes from the fact that I know this will someday change, and she may not “like” me for a little while, and probably rebel against every part of herself that is like me.  I dread the day.  The growing up is beginning, and this is the first of many times that I will have to let go.  I’m just not ready, and I’m sure it’s safe to say that I’ll probably never be.

I am truly happy for her though.  She couldn’t be more excited about going, and I know she’s ready for it.  I can also comfort myself with the fact that she has her big brother(and best friend) to look out for her.

I never experienced such heartache and joy simultaneously until I became a Mother.  My niece told me to listen to a song by Taylor Swift called “Never Grow Up”.  I did…with a box of tissues!!  It says it all.

“Can You Ever Return to Neverland?

Wendy: Where do you live?
Peter: Second star to the right, and then straight on till morning.
Wendy: They put that on the letters?
Peter: Don’t get any letters.
Wendy: But your mother gets letters.
Peter: Don’t have a mother.
Wendy: No wonder you were crying.

from: Disney’s “Peter Pan”

As parents we walk a tight-rope with our kids on so many different issues.  Trying to find the balance.  Lately, I’ve been wobbling more than usual on one in particular, being the fun parent or the practical parent. Of course there are times when I’m a little bit of both, and times when it’s obviously more important to be one or the other, but in general I think I tend to be the practical.  Now that I say practical, I’m not sure that’s really the right word.  I guess it’s more like care giver, or nurturer. I would like to be the fun Mom more, but it doesn’t happen.  I get lost in the details of things, like making sure the packed lunch has a favorite snack in it, or trying to squeeze in baking a batch of healthy cookies for an afternoon  snack, or making sure the play room looks like an inviting place to play.

You can count on the fact that while I’m busy doing these things, someone is asking me to play, or do something else, or generally dis-satisfied with something.  Here’s where the mental debate comes into play.  Should I be spending more time playing, instead of trying to perfect the things that I think make them happy?  What will they remember more, the fact that I made them cookies, or the time I played with them?  Of course it’s the time playing, but will the little things matter as much in the end?  I don’t know. But while I’m feverishly making those cookies, or putting the smiley face note in the lunch box, I’m having dreamy visions complete with “Leave it to Beaver” setting and music, of my kids  reminiscing on their childhood’s saying, “Remember how Mom used to put those notes on our napkins, and make us cookies, and fix our toys so nice!  She was the best!”  Then I get jerked back into reality with another whine of, “Mommy, when are you going to be done?”

Sure these things are nice, but are they as important as I make them up to be in my head?  Probably not.  I actually think that sometimes I give them more importance, to create an escape of sorts, because sometimes I just don’t want to play.   There, I said it.  I don’t really enjoy it most of the time.  I’m really not that good at it.  It’s like the classic movie of “Peter Pan”,  (which I love by the way) and I’ve grown up, never to return to Neverland.  Pretending is now a chore…the horror!  Ahh, I’m feeling like such an awful Mother as these words are being pounded out!  I’m sure I’m not the only one out there, but still, who wants to be that no-fun- Mom?

Once again I guess it all comes back to that balance thing, but it’s not easy.  How do you find the balance?

The Journey of Journaling

Last night I came across some old journals of mine.  Such an interesting read!  All kidding aside, I wanted more.  I’m famous for starting tons of journals and keeping up with them for a while, and then stopping.  That right there kind of says  a lot…starting and not finishing.  Not that journals are ever really ‘finished’, but you know what i mean.

There was one in particular that I had started just two weeks before i found out i was pregnant with my first baby, that was so insightful for me.  I didn’t want it to end.  It was like reading a great book that you don’t want to be over.  I found it especially interesting that I was on such a roll of real insight, and then everything stopped as soon as i knew i was pregnant.  I was so excited and completely enveloped by my baby that everything else just stopped.  It’s of course only natural for that to happen a little bit.  I’m so busy with nurturing others that i forget how nurturing it is for me to journal.  I guess i’ll just have to continue on in that journal, just 6 years later!  I’ll of course fill in that gap with the most important tidbits i can recall, and then continue with the present.  If nothing else, this journal will be something to share with my children someday.  Everything will become clear to them after reading it, i hope.  I may even share an excerpt or two in a separate blog, we’ll see.

The other journal that was so great to look at was one that i decided to write during my second pregnancy.  Something in me knew before it was ‘official’ that i was having a girl.  I thought it would be nice for her to have one day, maybe when she is having a child of her own.  I thought it would be interesting to compare pregnancies, and for her to know the thoughts and emotions i felt while carrying her.  I think also that when i became pregnant the second time, i realized how much i had forgotten from the first.  I wish I had taken the time to do the same then as well.  Live and learn i guess!  But that journal too, was not finished.  The end of my second pregnancy was stressful to say the least.  I was put on restricted activity due to early labor, and we were moving all at the same time.  I think i packed the journal, and never got a chance to unpack it!  I will revisit that journal as well. So much to add.  Some of it will be painful to re-visit.  My daughter was very sick when she was born, and spent a lot of time in the hospital.  The most difficult time of my life by far.  I’ve been wanting to write about that for a long time, but haven’t had the courage to yet…I will.  When i look at her now, healthy and 4yrs. old, i often get overwhelmed with emotion.  Many life lessons learned there.

Well, off i go to start filling in those blanks.  I hope I keep learning on the journey of journaling, and this time I’m determined to keep going.

“My Runaway Heart”

A few weeks ago, my 6 1/2 year old decided he was going to run away from home.  Why you ask?  Well, horror of all horrors, I wouldn’t let him watch a movie!  I know, i’m a terrible Mother.  The whole thing was quite comical, but did have many layers of good lessons for both of us.  I’ll get to the lessons later.  The comedy went down like this:

We were enjoying a leisurely dessert of ice cream on the deck, when”L” asked if he could watch a movie when he was finished.  I decided against it because he had already watched his limit of T.V. for the day.  Apparently, that was more disappointment than he could handle, so after much begging, he declared that he was running away.  I pretended not to hear that for a little while, but it became obvious that it wasn’t going to work this time.  I began to explain as simply as I could that it just isn’t safe for a 6 yr. old to travel alone.  Well, my son had a well thought-out answer for everything I threw at him!  Seems he’s quite the debator (one of the traits i fear he inherited from me…paybacks!)  “L”, “I won’t fall for any tricks Mom, if a stranger asks me for help, or wants to give me candy, I’ll run as fast as i can!”  Me, “Well, what if you get lost?” “L”, “I’ll take my chalk and leave a trail!”  Oh boy, I’m in trouble.  He’s determined!  This debate went on for a good 30-40 minutes.  During this time, he was inching his way off the deck into the yard.  The funny thing is every few minutes he would ask permission to go!  “So Mom, can i go now?”  At least he was using his manners, right?!?!

I finally decided that I was going to have to let him try, or he’d find a reason to want to run away the next day, and the next until he tried it.  I would follow him of course.  So I took a deep breath and said, “Well, you seem to really want to go.  Will you at least give me a hug & kiss goodbye?”  Now, “L” is not the huggy type, so to my surprise, he walked over a little teary-eyed and gave me a hug and kiss!  I know, this is all so dramatic, but just wait, it gets worse!  Then, he said he needed to get something to take with him…he went inside and came out with his baggie of Silly Bandz!!!  No pictures, blankie, favorite keepsake…Silly Bandz!!  I had to try not to bust out laughing!  On the inside, I was a bundle of nerves.. he’s really going to do this!

Off he went into the backyard around to the sidewalk.  During this whole time, my 4 yr. old was listening very intently.  My kids are very close, and I think it’s safe to say, best friends.  Well, the second he left the yard, “J” burst into tears….DRAMA!  Now this is making me even more emotional!  I quickly whisked her inside to explain that we were going to watch him from the window, he’d be fine.  Now it’s starting to look like a scene from a movie.  “J” runs to the front door sobbing and holding her dress up to her eyes to blot the tears, “L, I don’t want you to go!”  (Really, I’m not making this up!)  With that, he hears her crying.  He was only a driveway away.  He comes running to the door, “J what’s wrong, what happened?  Why are you crying?”  “J” keeps sobbing, “Because I don’t want you to go!”  “L”,  “I’ll be fine, J, I won’t get lost I promise.  I’ll be back.”….”J” keeps sobbing.

Through all of that, he was unaware that I was peeking out the window.  I was trying to comfort “J”, while keeping an eye on him the whole time.  Finally, he made it 3 houses down the street to where I could barely see him.  I grabbed “J” and started outside to get a better view, and get into the car if I had to.  Just as I get outside, I hear the ice-cream truck. (a very rare occasion in our neighborhood)  As I look down the street toward “L”, here comes the truck toward him.  Well, the driver must have thought “L” was coming to tag him down, and very quickly pulled the truck over to the curb.  It was perfect.  “L”  FREAKED!!!  All I see is him turn around screaming, “MOMMMMYYY!” and running faster than I’ve ever seen him run home.  I was of course heroically waiting in the driveway to comfort him!  “Mommy, there was a truck with 2 men, and they were gonna take me!”

Could the timing of this been any better for my son who had an answer for every scenario I threw at him?  My heart ached for how frightened he was, but at the same time, I had to try not to laugh!  The whole scene was kind of comical!  I would love to know what the ice-cream man thought!

I think it’ll be a long time before “L” decides to run away from home again.

Now to the lessons.  “L” obviously realized the dangers of being 6 and alone on the street.  I think he also realized on a 6 yr. old level how much he’s loved, protected, and safe at home.  Even without an extra movie, he’s got it pretty darn good.

As for me, I’ve had so many emotions about this for weeks now.  I couldn’t help but feel the aching tug at my heart.  Since the day they are born, they are constantly pulling away from us.  Striving for independence and confidence, to be their own little person.  It all comes in stages, and each one hurts a little more.  Weening, starting school, first run away attempt.  I was having flash forwards the whole time.  The first time he drives on his own, going away to college, and hurt of all hurts for a mother, finding another woman to love and getting married.  Each time these things occur they tug at my heart, and I’m sure take a little piece with it.

Then I realized too, how much he needed me to let him go.  He longed for me to say it was o.k.  “Mom, can I go now?”  I guess my job is to give him the tools, and character to be o.k.  And he will.  For every tug or piece missing from my heart, he will fill it with something more.  Becoming a great person.   Going away, but coming back with more.   Someday I hope that he has a fulfilling life, happiness, someone to love him back, and if he chooses, a family of his own.  My heart will then be overflowing.

“Tiny Fingers”

I was having one of those “off” days yesterday.  You know the kind, things just seem out of whack, you don’t quite feel yourself, yet you can’t put your finger on the exact thing that’s causing it.

I was in my stay at home Mom shoes yesterday, didn’t have to be at my store.  I’m so fortunate to have those days at home, yet every mommy task was pulling at me.  I was muddling through.  Then it changed with the help of some tiny fingers.  My baby’s fingers to be exact.  Mind you, she’s four, but still my baby.  After a very typical lunch, she decided to lay on the couch for a few minutes.  “Mommy, will you snuggle?”  She didn’t have to ask twice!   I closed my eyes to relax.  Her tiny fingers began to gently touch my face.  “Mommy, what’s that spot?, Why do you have lines there?, Will you give me Eskimo kisses?”  Of course she was pointing out all of the imperfections on my face that i usually obsess over, but it didn’t matter.  Her tiny fingers were like little injections of energy and sweetness.  Each one made my smile a little bigger, till we were giggling!  Finally an Eskimo kiss, her favorite.  That ten minutes changed my day.  Her tiny fingers.

I smiled more the rest of the day.  This is why I’m here.  I am blessed:)