Saturday, February 26, 2011

To try or not to try? That is the million dollar question!

I've been asked several times ever since Everett passed, "are you going to try for another one"? I think someone even asked me this the day of his funeral. I was told that people would say stupid things and to be prepared for that and we were for the most part. I do remember one of my grandmother's old friend's saying to me at the funeral, "don't worry honey, you'll have more children". I know she meant well by this statement but I couldn't help but want to yell at her, 'You have no idea how badly we wanted this child. You have any idea how much he meant to us, how much he will be missed and how he can never be replaced by another child', nor would it be fair to another child to do that. But I didn't say that. I just nodded and moved on.

I remember thinking throughout my difficult pregnancy that I was so glad this was our last child. We were finally going to complete our family. I also remember people telling us how lucky we were to have one of each. I honestly didn't care what the gender was of the baby, I just wanted our baby to be healthy. It was the same with Lilli. I have some metabolic issues I was diagnosed with in my early 20's and getting pregnant is not an easy thing for us. Both Lilli and Everett were conceived with the assistance of an amazing reproductive endocrinologist here in Indy. It took may months of fertility drugs, injections, ultrasounds, doctor appointments, hormonal roller coaster ride after hormonal roller coaster ride, and other invasive processes to get them. Then the pregnancy themselves took a toll on me. When I was on bed rest in the hospital, about a week and a half before Everett died, I thought to myself that this would be totally worth it in the end. And you know what, even with the circumstances that occurred, he was still totally worth it. If I could have the ability to choose the way things turned out, I would undoubtedly choose for him to be here with us and to not be going through what we have and will continue to go through. But I got to carry and fall in love with this beautiful red headed little boy, who wasn't so little, and who's long term legacy will go on to (hopefully) help so many other families in the future.

So when I'm asked the question, "Are you going to try for another", it's not that easy of an answer. I would love to have another child, or two if pregnancy was a piece of cake for me, but pregnancy itself scares the crap out of me. So does completely loosing my faith with physicians, people you are supposed to be able to trust. I put my trust in the people that were supposed to care for me and our son. I tried to advocate for myself and for Everett and no one listened. Would it be any different with a different doctor?

Dave and I met with a new Maternal Fetal Medicine Doc, in a different hospital system, for a pre-conception meeting. She looked through all 8 or 9 inches worth of my medical records before our appointment from my pregnancy with Everett. She assured me things would be completely different if we decided to get pregnant again. I got the feeling from her that she wasn't just telling us what we wanted and needed to hear. That she would actually follow through with her words.

We have a plan, we have a new team put together but I am not emotionally ready for that journey. I thought I would be by now and even gave myself a deadline. I came to a realization after much soul searching that a new member of our household shouldn't have a deadline on when to potentially arrive. I didn't want that big of an age gap between Lilli and whoever would come after and thought it was perfect with she and Ev being just about three years apart. Now that's just not an option. Our lives have changed and that is completely out of our control. How much of life is truly in our control? I'm learning that not much, if any, of it is. Although I still like to tell myself differently because it makes me feel better! :) I've decided to continue to let myself heal further emotionally before pushing the issue. I don't know when I'll be ready or if I'll be ready, but I think I owe it to myself and the next child to give myself the time I need before jumping into an already emotional process.

The six month marker of Everett's death has been the hardest, for me, by far. It makes me nervous for the one year anniversary, but at least we will be surrounded by friends and family who are planning to attend the inaugural Run 4 Everett. Things are coming together, slowly but surely, and I am pretty certain it's going to be a great event!

~Steph

Thursday, February 17, 2011

Ray of Light

It's late, and I'm tired, but wanted to put some thoughts down before they left my head. I had a super awesome day with my three year old today and I've been reflecting on just how lucky I am.

Lilli entered this world on her terms, no surprise there, a little over three years ago. My pregnancy with her wasn't as difficult as Everett's, but it wasn't worry free either. I remember hearing at one of my ultrasound appointments around 30 something weeks I was carrying too much amniotic fluid and they would "keep an eye on it", as this can cause a pre-mature rupture of membranes, thus causing early labor.

It wasn't long after this I was at home, on a Sunday evening, and my water broke. I remember being in the bathroom when it happened and saying, "oh no". Dave heard me and asked what was wrong and I told him. I was a bit panic stricken as I was only 34 1/2 weeks pregnant and we didn't even have our bag packed for the hospital (Dave told me we had plenty of time to get that done). It was just earlier in that month we had finished our birthing classes. We went to the hospital and my Dr. met us there. She informed me since I was past 34 weeks they didn't give steroids for the lungs and my labor wouldn't be stopped. They delivered me in the O.R., not because it was a c-section, but because it was closer to the NICU. Lilli came out relatively fast, only three sets of pushes! She looked bewildered as they put her on me for a brief moment, almost looked like she wanted to say, "what the hell just happened"? Her eyes were wide open and we remarked on what a good size she was for being early, 5lbs 14oz and 19 1/2 inches long. Lilli's lungs were a little sticky when she was born and had to be "jump started" with a bag shortly after she was delivered. Once they did that she thrived from there on out! She only spent a short 6 days in the NICU, although if you asked me at the time it felt like an eternity!

The first year was rough as she didn't start sleeping through the night until she was over a year old. She was diagnosed with severe acid reflux at only 2 months of age and we spent her first Christmas in the ER with the reflux was so severe she decided to stop eating because of the damage it had done to her poor little throat! We finally got on track with a GI doc, an ENT and a new pediatrician! She had to have tubes put in at 8 months due to chronic ear infections from the reflux pushing it's way up to her eustachian tubes repeatedly! She had horrible textural issues because of the damage done to her throat (would cough, choke and gag on foods), she aspirated on liquids unless they were thickend, and had to be given medication six times a day. We got her in with a very talented Occupational Therapist through an early intervention program here, who worked wonders, and the rest is history. All of this now feels like a blur.

Even with all this going on and all the pain Lilli was having she was a very happy baby. She smiled all the time and the more you smiled at her the more she smiled back. We were told at her old daycare that teachers would come into her room to visit her if they were having a bad day just to get a glimpse of that smile. It's the type of smile that would just melt you and make all your worries go away, at least temporarily. Lilli truly is beautiful from the inside out. It radiates from her, even at three years old. I know I'm her mom, but I'm also not the only one who has noticed this! :) Sure she has her typical three year old moments, lately more so than not, but she always returns to that smiley happy go lucky girl.

This evening as I was laying next to her, trying to get her to fall asleep, she wanted to tell me all about her evening (it was grief support group night for me). She was full of excitement and just so happy about her day, a total chatter box. She told me several times how she had "such a good day today". She would just smile and look at me with her big beautiful blue eyes twinkling at me. Then to top it all off, she told me I was her best friend. I should get that on tape now, as I know she will not feel that way when she gets older.

When we lost Everett, Lilli had a sense about her that seemed mature beyond her years, which scared me a little. Her normally boisterous voice would change and become soft when she talked about her baby brother and how sad everyone was at the hospital. She still does this whenever she mentions him. Dave and I are so grateful to have her in our lives and both had stated we don't know if we could get through this without her. She brings us back to some sense of normal.

I guess you could say Lilli is our "miracle" child. We spent many months of fertility treatments to have her and considering how her first year was, I think it's ok to categorize her as that. All I know for sure is I am so happy to be her mommy, and even on her crankiest of days, I wouldn't trade her for the world. She will never know how much I love her, that is until she has a little darling of her own. Lilli truly is our ray of light.

~Steph

Wednesday, February 9, 2011

Grief Sucks!

Do you ever wake up, or have a hard time falling asleep, with your mind just filled with stuff and find yourself going over and over the thoughts, not being able to shut your mind off? I have had that happen to me a lot lately. At least I know what triggers it, but still, it's annoying. These thoughts are the same ones that haunt me from time to time. They are the facts of our son's death that have become my life over these last six months. It really doesn't help that I have now had three vivid dreams, two just this week, that Everett was alive all to wake up to the realization that he's not. When he first died there was nothing I could do to escape my thoughts. My mind was my own worst enemy and it still is from time to time. All the events leading up to his death and then everything after kept playing over and over in my head like a broken record and there was nothing I could do to escape it. All I could do was cry at the horror. I kept asking myself things like, did this really happen? Did I really spend just about the entire year pregnant? Because in a flash, the results of what I went through all year long had been taken away from me, taken away from all of us.

I've had several triggers in the last couple of weeks that brought me back to almost full blown grief, like the kind of grief I had in the beginning. This is the kind that's hard to escape from and causes you to go from calm to pissed in two seconds flat. This week though, has been the pits. It probably doesn't help that Everett died six months ago today. While I am so thankful that time has given the illusion to have flown by these last six months, I wish I could go back. I wish I could have advocated harder for him somehow. I wish I had been listened to by my doctors. I wish he was here with us and not in Heaven.

In all my trainings I've had over the years, including my extensive crisis response training, I've been taught there's no right or wrong way to "do" grief, unless you are harmful by immersing yourself in risky behaviors or drug or alcohol abuse. And I know in the back of my head that on some levels I am normal. But at times, it doesn't feel normal. I guess that's because it's still so new. Let's see here, there are seven stages of grief, although some models show five:
1. Shock and Denial-been there done that!
2. Pain and Guilt-Check
3. Anger and Bargaining-triple check on the anger one!
4. Depression, Loneliness, Reflection-I seem to be floating in and out of this one, although spending less time in it than I did in the beginning.
5. The Upward Turn-working towards it!
6. Reconstruction and Working Through-again, working towards it!
7. Acceptance and Hope-somewhat doing this one, I have hope for the future, am focusing on the race, but can't think about Everett without pain and that gut wrenching feeling of missing him horribly, and I would hope no one would expect me too!

I think sometimes people mean well, but expect you to move on way sooner than you are ready to and especially when grief entails loosing a baby, the taboo subject no one wants to talk about. With the loss of that child comes the loss of so many hopes and dreams. It's not knowing what that child would have become, not getting to see them grow up, not even knowing what color their eyes were. Dave and I drove past a soccer field this fall and I had tears filling my eyes as I watched a bunch of teenage boys practicing for an upcoming game. I remember thinking I'd never get to see Everett do that, or play football, or anything else he might have been interested in. You think about those things when you are pregnant, or at least I do. I dream about what my children might be when they grow up. What kind of actives they would be interested in, that kind of thing. I knew Lilli, from the womb, would be great at gymnastics and her tumbling classes are proving that right. Everett had a really strong kick in the womb and I often thought he'd be great at soccer.

I am including the poem we had in Everett's memorial card at the funeral:

Million Times

A million times we've needed you,
A million times we've cried,
If love alone could have save you,
You never would have died.
In life we loved you dearly,
In death we love you still.
In our hearts you hold a place,
No one will ever fill.
It broke our hearts to lose you,
But you didn't go alone.
Part of us went with you,
The day God took you home.

I included this because it was true then and it's true six months later. I am not the same person I was before Everett left this world and I won't be. I am still trying to figure out what my new "normal" is. To any of my friends reading this or others who know someone who's gone through something similar, don't be afraid to speak my son's name, or another child's name who is gone. Don't be afraid you will upset me by mentioning him. It helps people to know that the child they loved so much and lost is remembered by others than just them.

~Steph