Saturday, September 24, 2011

Never Is a Promise




This is another song I feel a strong connection to.  To me, it's an honest answer to someone claiming that they know what you are going through and how you're feeling.  I find myself UBER glad that there are more people who don't have to live this loss than not.  I wouldn't wish this journey on anyone, but at the same time, it's a journey of love and it's mine!  I will walk with pride!



Never is a Promise by Fiona Apple

You'll never see the courage I know
Its colors' richness won't appear within your view
I'll never glow the way that you glow
Your presence dominates the judgements made on you


But as the scenery grows I see in different lights
The shades and shadows undulate in my perception
My feelings swell and stretch I see from greater heights
I understand what I am still to proud to mention, to you


You'll say you understand
But you don't understand
You'll say you'll never give up seeing eye to eye
But never is a promise and you can't afford to lie


You'll never touch these things that I hold
The skin of my emotions lies beneath my own
You'll never feel the heat of this soul
My fever burns me deeper than I've ever shown to you


You'll say "don't fear your dreams"
It's easier than it seems
You'll say you'd never let me fall from hopes so high
But never is a promise and you can't afford to lie


You'll never live this life that I live
I'll never live the life that wakes me in the night
You'll never hear the message I give
You'll say it looks as though I might give up this fight


But as the scenery grows I see in different lights
The shades and shadows undulate in my perception
My feelings swell and stretch I see from greater heights
I realize what I am now too smart to mention, to you


You'll say you understand
You'll never understand
I'll say I'll never wake up knowing how or why
I don't know what to believe in
You don't know who I am
You'll say I need appeasing when I start to cry
But never is a promise and I'll never need a lie

Basket Case



I was driving home last night from my good friend's birthday celebration and for some reason I was WAY deep in my head about Trey so I decided to seek some music therapy via my ipod.  I selected a playlist, but ended up listening to Sara Bereilles and heard this song for the first time.  I think EVER Baby Loss Parent can identify with this song.  I didn't sing along last night, I just listened...





Lyrics | Sara Bareilles lyrics - Basket Case lyrics

Tuesday, September 20, 2011

Matters of the Heart



So LL has to go to a Pediatric Cardiologist on Friday to have a heart murmur checked out.  Part of me isn't worried, as she probably has the same thing I do.  Every few months, I am going about my normal day, my chest will suddenly hurt when I take a breath.  I slowly breathe through the discomfort and in moments it is over until another few months passes.  I have never had treatment for my irregular heartbeat but it is noticed and monitored when I am under medical care.  Trey also inherited an irregular heartbeat from me, though that was the least of his problems.  So, I am pretty much in good spirits about this development, until the wheels in my head start turning...

All of the ultrasounds of our daughter that were taken by the neonatal specialist whose main specialty was neonatal cardiology.  I am sure he was chosen to take care of us during our pregnancy due to all of the heart complications that Trey had.  He spent LOADS of time searching every nook and cranny looking for any abnormalities, whether Trey had them or not.  He also listened to her heartbeat from different angles.  I bet we have more pictures of her heart than any other body part.  He also looked for other signs of CHARGE such as a clef palate or deformed ear.  We were beyond relieved every time he told us that everything he was seeing in her was healthy.  So you can imagine my surprise when, with all the time he spent looking at her heart, that a murmur could be missed.  Maybe they can't tell about stuff like that in utero?  Maybe the murmur is so minute, that it was impossible to detect, even with the best medical equipment.  Maybe the murmur has developed since the last ultrasound.  These are the thoughts that run through my head, but the last one ESPECIALLY scares me.  

Our daughter hasn't presented with any breathing difficulties or chest pains, yet who knows what's coming.  Trey's CHARGE diagnosis slapped us upside the face and downside the other.  

I remember the panic in the midwife's reaction that I had not yet been seen by the neonatal cardiologist after suspicions of a heart problem arose.   I remember the two hours I had to lay on the ultrasound table in pain (that I would later learn were contractions) while one neonatal cardiologist after another came in to look at Trey's heart only to not be able to see all four chambers of his heart.  I remember the flood of tears as the head NC Specialist telling us the extent of his heart problems, that it was so serious we were going to have to go to a special hospital for further testing, although I am sure I have blocked out the name, it was THAT severe.  I remember scouring the internet with my husband that night looking for ANY information on the heart condition that Trey had, which was also blocked out when CHARGE was diagnosed.  I remember the brave face I put on when I went into work and tried to explain to my co-workers why I had missed the baby shower they were supposed to throw for me the day we were at the NC.  Then I remember the next day...being admitted six weeks from my due date into the hospital.  I remember the specialists checking Trey's heart rate more frequently than my contractions were.  I remember wondering if their visits were THAT frequent, why didn't they just take him out of me via C-Section.  I remember him not breathing when he was born and screaming at everyone in the room to make him breathe.  I remember never seeing him without breathing equipment.  I remember the doctor telling us about CHARGE.  I remember hoping for machines to slowly not be needed anymore as we waited for a bed at the children's hospital.  I remember the day they called us and told us he was being transferred and I remember being told by the Dean of Medicine of the children's hospital telling us "I'm afraid you haven't been told the whole story", yes, I quoted him.

So this brings me to Friday's appointment, I am going solo as John did the two month shots.  For some odd reason, I can't talk to Trey about this one.  I know he is with her, always looking out for her, but he can't change the wheels that are already in motion in her physiology.  I suppose Friday I will ask for his strength, it just hurts so much to reach out to him, when his heart... had so many problems (I won't EVER say his heart was weak).  

So for now I exhale, and hold onto hope that our little girl's murmur is nothing more than what I have and that she WILL grow out of it as the pediatrician says.  Bless her little heart!

Sunday, September 18, 2011

Friday Rainbow Baby Blog Rodeo



LL has officially joined the family Georgia Tech tradition!  In the last month she has also been working on her signature smile which shown brightly as she donned her Yellow Jacket fan-ware!  She's very happy to be a Ramblin' Wreck From Georgia Tech and she's cutest, most precious fan I have ever seen!  She's too young to attend the games with Mommy, Daddy, and Uncle B, but she is DEFINITELY ready to wear our colors and talk to/yell at the TV while the game is on, just like her Daddy!  They say the first color babies see is red and she was VERY fussy during the last two Georgia Bulldogs games (they're colors are red, white, and black).  I am sure that by watching the Tech games, she is rapidly developing her recognition of yellow!  GO JACKETS!!






Wednesday, September 14, 2011

Missing him a lot today...

Kissing You

Pride can stand a thousand trials
The strong will never fall
But watching stars without you
My soul cries

Heaving heart is full of pain
Oooh, oooh, the aching
'Cause I'm kissing you, oooh
I'm kissing you, oooh

Touch me deep, pure and true
Give to me forever
'Cause I'm kissing you, oooh
I'm kissing you, oooh

Where are you now
Where are you now
'Cause I'm kissing you
I'm kissing you, oooh
 
- Des'ree

Saturday, September 10, 2011

Confessions of a Working Mom

Three weeks ago I went back to work and was GLAD to do it.  Some people are surprised to hear me say this, surprised there were not tears shed over her going to the sitter's, surprised I didn't blow up the sitter's phone checking on my daughter the first day.  And yet others were relieved to hear me say that I was happy to be back at work, it made them feel better that they felt the same way when they went back to work.

It's not that I don't like or want to be home with my daughter, it's just that when you spend 9 months plus maternity leave eating, sleeping, and breathing for your baby, a little separation gives you a piece of yourself back.  I am also not a home body, I get cabin fever easily so I started running out of field trips that Lorelei and I could go out on.  The first month with Lorelei was rough but took a turn for the better right around the time I went back to school to set up my classroom.  Maybe it's coincidental, but when I started setting up my classroom for the first week of school, which I would be missing on top of pre-planning due to maternity leave, something clicked in me that I was better able to handle her finicky nature which was good for both of us.  Getting back in my career element interrupted my perception that I was forever attached to her.  I was able to step outside Mommy role, if only for a few hours and step back into my career role, an adult role, which actually allowed my Mommy side to recharge making  me MUCH better for her, (not that Mommy role ever ceases...)

When the career ball started rolling, I found myself again, outside of being a Mommy, a role I am blessed to have and wouldn't trade for the world. Of course I feel guilt about wanting to be away from my daughter, but I have found that it is human nature.  Some people can spend every waking (and sleeping) moment with their kids, and do, but as for me, I need the "me" time away so that I can fill my "Sharon" bucket.  With my bucket full, I can dive into my time with my daughter before and after my work day is through.  Though I didn't call every hour checking on my daughter, I rushed out of work to go pick her up and take her home to snuggle.  She did well for the sitter, which I had faith that she would, and we were both happy, which is the most important thing.

I doubt I'll EVER be a stay-at-home mom (Summer breaks for don't qualify me as a stay-at-home-mom), it's just not for me, but I would if it would benefit my child(ren).  I do worry about how many smiles and coos I am missing, the hours I don't get to watch her precious face and movements as she sleeps.  I can never get that back, but I am convinced that she realizes this and gives extra smiles and coos after I pick her up to give me a synopsis of what I missed.  I hope that one day she realizes that Mommy is in a career that she LOVES, and that she will want to follow in my footsteps and choose to go to college, earn a degree in an area that interests her, and start a career that she loves.  But for now, I am content to give her my best when I am with her, yearn for the time when we are together again, and enjoy my career and my daughter and the happiness they both bring me.

Friday, September 2, 2011

The Sins of the Mother


Last weekend I was all set to write about my first week back at work and Lorelei's first days at daycare (which incidentally went well, no tears from me and she loves her babysitter) when I was hit with a bombshell. John and I were talking about the difference between having our two children.  Obviously our rainbow baby is home with us and Trey never came home so life with her is WAY different than our life without Trey.

We got to talking about the day we signed the papers for Trey's life support to be turned off.  I remember that day so well.  We were both standing at the window of his NICU private room and the view couldn't be worse, the roof of the adjacent building with all its glorious scenery.  I remember asking him if he wanted to be present when Trey passed on and he asked me the same question.  I replied that I did not want to watch my son die and to that he said that his place was with me.  We left, but waited down in the lobby for his mom to come, but she never did.  We left at 5:30, the time designated time the machines were to turn off and Trey would begin losing his life.  I was worried that he would be alone when he died and felt extreme guilt about leaving him to die alone.  We got home and waited for the call from Trey's doctors that he had passed but we were pleasantly surprised when the phone rang and my dad was on the other end.  He told us that Trey passed peacefully and that John's dad, step mom, my parents, and my aunt had stayed with him until he passed.  I was so thankful he was not alone, yet the guilt of not holding his hand as he grew his wings will forever haunt me.

In discussions that came later, my husband would tell me that he didn't want to be there when Trey died because he had watched him "die" (code) numerous times the night he was born as the doctors tried to get him stable, which my husband never actually told me the number of times that happened.  Little did we know, the hour and a half they spent trying to get him stable would end up killing him.

That brings me to last weekend when John told me he actually wanted to be there when Trey died.

My heart dropped, the tears poured out, and the guilt mounted.

I know it was his choice to take care of me and be with me during this difficult time.  That speaks volumes abut the kind of wonderful husband he is.  But I couldn't help but feel that if I had been little less of a coward, afraid to see my son die, my son would've had his daddy with him when he journeyed to Heaven.  I feel like I deprived my son of that by making John feel that he had to be with me instead of where he truly wanted to be.  I could've handled it if he had told me his heart's true desire to stay with Trey.  I would've encouraged him to be there, I would've waited for him in the lobby.  It would've brought me peace to know he was there with his son.

This bombshell shadowed my weekend in tears and heartache.  I apologized to Trey and my husband profusely but my heart still remains heavy with this knowledge.

My husband is an amazing man who showed the ultimate sacrifice in letting his son go and leaving with his distraught wife instead of staying to say good-bye to his baby as he died.  Honestly, I feel like the crappiest wife ever for letting him do that.  I know him well enough to know that sometimes in emotional situations, he doesn't give me the real answer right away, he gives me the tough guy answer and later on I get the real answer.  I should've asked him again, or asked him if he was sure, maybe I did, but I didn't push hard enough.

God bless him for what he did and I hope Trey can forgive me for taking his daddy away from him in his ultimate hour of need.