Monday, July 28, 2014

Peer Companion Training

This past weekend I had the honor of attending a Peer Companion workshop hosted by the Florida Chapter of the Tears Foundation. If you've never heard of Tears check them out, I was able to spend the day with 10 amazingly strong and beautiful women who, like me, are the unfortunate 1:4 women who have experienced infant and pregnancy loss. In our small group there were moms of multiple miscarriages, moms whose babies were born still, moms who lost due to incompetent cervix, trisonomy, strep B and vein of gallen. All of our stories different yet each of us still aching for our little ones who don't get to be with us. All of us wanting to help break the silence and be support to those who every day are added to our 1:4 club. 

Some of us were young, some were older. Some with other children, some who never got to keep theirs. Some many years from their loss and others more recent. Some pregnant, some hoping to be. Some who had met before and others total strangers. Eleven women different in so many ways but bonded by one commonality; our beautiful babies. 

We shared our babies, our pain and our hopes. There were tears yet there was lots of laughter. There were new friendships made; bonds that will last over many years as we all work towards our shared goals. We were all there to be trained to help others who are just starting their grief journey. Each of us wanting to be able to be the safe shoulder to cry on when the world is full of darkness and all hope is lost. To be that rock for others when their world is crashing down. And to be the calm voice when they feel like they are going crazy. 

Being with these women was incredibly rewarding. You feel an instant connection. We could have spent days together and still had so much more to talk about. I truly didn't want the day to end. I found myself in a conversation with two other moms and I heard myself saying how exciting it is to talk to someone who truly gets "it." And I realized how odd that sounded. Excited and baby loss don't belong in the same category, yet it's so very true. When you find someone who gets "it" and you on that deep, I've been there and know how you feel level, it is exciting. 

I left this weekend feeling refreshed and inspired. Since Avery I've wanted to do good. I want to bring some positive out of an absolutely awful situation. Becoming a peer companion is just one of the first steps towards that. I am so thankful for this workshop, these relationships I've built and for the Tears Foundation for making it possible. I see many more things coming in the future for me to reach out to the community, support other families of loss and do to is to hp break the silence. 

"Out of the ashes of our hopelessness comes the fire of our hope." - Anne Wilson Schaef

Tuesday, July 15, 2014


I don't know if I've really shared this with many but I need to get it out. 

The night of June 11th, the night before Avery passed, I had this overwhelming fear that something bad was going to happen. It was time to get ready for bed and she was falling asleep in her bassinet and I just sat there crying uncontrollably. I told my husband how I was so afraid something bad was going to happen to her. I just remember feeling so strongly that something bad was going to happen. I was so worried and full of anxiety. 

He calmed me down. We talked about how it was normal to be nervous. We talked about how we were doing everything we could to help keep her safe and to help her thrive. I chalked up my anxiety to just that; first mom worry. Adding to the anxiety, I told myself I was extra worried because he was going back to work the next morning. I was nervous about my first day alone, worried because she was actually really fussy earlier in the night which we hadn't experienced with her before that point. I wrote off the fussiness as gas because she had finally nursed so good that night that I didn't want to interrupt her to burp. 

That night, I couldn't sleep much. I was up constantly checking on her. At 5 I was absolutely exhausted and finally slept fell asleep for more than 15 minutes. I woke up just an hour later to Eddys alarm clock going off for work and my world falling apart. My fears were realized at that moment. 

Needless to say, this has been something I've struggled with. I feel so guilty for ignoring my instincts. Did I subconsciously know that something wasn't right?  They say always trust your instincts. But when you are a new mom, your nerves are always on edge. There is no user manual with exact, step by step instructions. You can read every book written and still worry insistently. How can you really separate the two? Internally I battle this. If I would have listened to my gut, would Avery still be here? But what would I have been able to do differently? She wasn't sick, she wasn't injured, she was perfect. If I would have called our pediatrician, they would have thought I was crazy.  I know this logically but emotionally it's so hard to separate when that feeling was so strong and my fears actually came to fruition. 

Clearly, now when I feel worried about something, it's hard for me to shake. There is ALWAYS that thought on the forefront of my mind that maybe I'm not just being uber paranoid, maybe it's not just worry, maybe there is ACTUALLY something to worry about. Maybe whatever it is I'm freaking out about is legitimate and I need to do something about it. It's a losing battle because I AM uber paranoid now, everything scares the hell out of me and I am terrified Harper will leave us too. How am I to really know what's paranoia and what's instinct?

This week I've had that awful anxious feeling again. I have that feeling that something is going to happen to Harper. And to be honest, I feel like I am going to explode. I am on edge. I cannot relax unless she is right there in front of me. And it is making it so difficult to let her out of my sight. I don't want to leave her and I cannot stop worrying the whole time I am away from her. It's stomach churning, heart beating out of your chest, years ready to fall in an instant, ready to jump out of your skin, hard core anxiety. 

It's so hard to manage. I have a job, I have other responsibilities and I am sure all this anxiety is just because our routine is different this week (and last) because her normal sitter (my aunt) is out of town. But she is my absolute top priority and I can't help but worry that it's my intuition kicking in again. 

Do I really sense something is wrong? 

Am I just overly cautious now? 

How do you know? 

How will I ever win this battle?

I don't just don't know...

Sunday, July 13, 2014

Fears with Parenting After Loss

I understand being a parent is full of fears, but when you've gone through the worse, your world is opened up to the awful realities of all that can and so often does go wrong. My pregnancy after loss, PAL as it's referred to in the loss community, was full of so much more anxiety than I would have thought possible. And having her here finally is an ever changing cycle of fear, anxiety and worry.  Just when I think I've got a handle on my fears with Harper, she changes and we enter into a new phase of her life and in turn more fears.

With my pregnancy, I was so afraid I would miscarry. Every twinge sent me into a panic. Every time I went to the bathroom I was afraid to look, afraid it would all end. I had no spotting with Avery so when it happened with Harper, I just knew I would lose her too. 40 weeks seemed way too much to bear and I knew something that so many don't...there is no magical "safe zone." But slowly, so incredibly slow, the weeks kept passing and thankfully, Harper kept growing. 

As the weeks passed, my miscarriage fears turned into fears that she wouldn't develop as she was supposed to. I was terrified we would be told there was something wrong, something that would take her from us; trisomy 13, anencephaly, triploidy, failure for organs to develop, this list goes on and on. I was anxious as we went in for our 20 week anatomy scan. The thought of the doctor using the god awful phrase "incompatible with life" scared the hell out of me. I actually think I was holding my breath unintentionally through the ultrasound, I got dizzy and lightheaded.  I almost passed out right there on the ultrasound table. But thank God, we were fortunate, her scans looked healthy. Phew... 

The sigh of relief from her scab was short loved however. And my fears then went to stillbirth. I know far too many beautiful mommas who were forced to go through hours of labor only for their sweet baby to enter this world as silently as they left it. Beautiful, perfect babies gone. No warnings, no time to prepare. Futures cut short, worlds turned upside down. 

As soon as she started moving, I did kick counts...constantly. If I didn't feel her moving for even the shortest period of time, I was panicking. I was gobbling down candy to try to wake her up and running for my Doppler to listen for her sweet heart beat. Every day, I lived in fear that she would leave us. And I lived in that fear for the last half of my pregnancy. 

Then the real test of my nerves came, she was here and healthy but I was absolutely, positively, scared to death that something would still happen. After all, we left the hospital once with a healthy baby only to have our world completely turned upside down within days of the doctor saying she was perfect. I was so afraid I would wake up to that same horror again. I would lay awake and watch her sleep, sleep with my hand on her chest, I refuse to sleep unless she has a breathing monitor on and on more than one occasion, as she was sleeping in my arms, I truly thought she stopped breathing. It was absolutely awful. 

As she gets older, her risk of SIDS decreases. Part of me feels I can breathe a little easier and the other part of me thinks statistics are crap. I've already won the unlucky lottery. Avery's risk was almost non existent. She was so young for this to happen, we took all recommended precautions and yet, she's not here. So eve though SIDS risks decrease greatly after 6 months, I still worry. A lot. And now, she's decided to start rolling over in her sleep. She's started wanting to sleep on her stomach. And again, I'm scared. 

I keep wanting to hit the one year mark so quickly. But I realize that I'm always going to have a new worry or fear. As she grows, she will always be at risk for something. There are so many awful things in this world. I'm always going to fear. And being a baby loss mom, my fears are amplified. I know what it's like to hear those awful words, to plan a funeral and to have to live every day missing a huge piece of your heart. 

There is no easy way through these fears. You must face them, live with them and try as much as possible to get passed them. Prayer, education and support from other loss parents and from friends and family is what's helping me get through. I'm realizing that I just have to enjoy and take each day we have with Harper as it comes. 

Friday, July 4, 2014

'The Bag'

I wrote a few months ago how after almost 2 years the police department called for me to come pick up the personal belongings they had left from Avery. Thanks to some great friends, we didn't have to go in ourselves. And all that there was left was a small gift bag-contents unknown to us.  Since the day we picked it up, it had sat at the top of Harper's closet (our house is small and her closet had the most room). 

Today, I decided I would start packing up some items Harper isn't using anymore to take to a consignment shop. In the top of her closet, right next to 'the bag,' were some extra baby towels and washcloths we had never opened. I knew I should have waited for Eddy or even gotten a stool but I was being lazy so I jumped and hit he washcloths so they would fall to the ground. Down they fell. What I didn't expect, and really I'm like 0% athletic so I really should have kno it would go right, was that I also hit 'the bag' and it came flying down as well. 

I froze, afraid to look. Afraid the mysterious contents would have spilled out. Luckily, they hadn't. The bag landed perfectly upright but with the top open. Unluckily leaving the contents on display for me. Now I don't know if I was just shocked or I am just a glutton for punishment but I immediately reached into 'the bag.' I could tell just by looking into the top of 'the bag' what it was. It was a baby hospital blanket. 

My heart leapt. I thought I left the blanket and hat that we had for her when she was born at the hospital. I'm not the type to remember those type of things when I'm ready to take my baby and get home. Even though I said I wouldn't, I forgot Harper's too. The excitement was short lived. 

As I unfolded the neatly folded blanket, it felt odd. It was stiff, not soft like one we would have wrapped her and held her in for hours when she was born. And then I saw them, the stains, and I realized this wasn't a blanket from when she was born. It was the blanket they wrapped her in that awful day in the emergency room. There are small stains of blood that I imagine were when they were trying to start IVs and other lines. 

With this blanket in my hands, I can almost see the scene playing out. I've read the hospital reports, I know what they tried as the desperately tried to save her. And just like that, I'm a fly on the wall in that ER room. I can see it all happening. I'm reliving the nightmare all over again. 



Why, why would they give this back to me? 

I panicked. I immediately folded it up and placed it back in 'the bag' and put it right back at the top of the closet. I forced my memory to stop replaying the scenes from that day. 

This blanket, really? What am I supposed to do with it? I can't throw it away, it's literally the last thing she touched, it's the last thing we saw her wrapped in. But seriously, it's not like that's really a memory I want to pull out of her memory box years down the road. It's not something I want to show Harper and she learns about her big sister. 

This was seriously NOT how I saw my morning going. Not that I should be surprised. Just another day in the life of a grieving SIDS mom.  Just when you think nothing else can get to you...BOOM! 

It's only 9:30 and I am completely ready for this day to end. 

Thursday, July 3, 2014

2nd Birthday

Avery's 2nd birthday and anniversary came and went. This year I honestly was in a fog during that time. I wanted to show her how much we love and miss her. It at the same time, missing her is still exhausting and I really wanted to just get it over with. I know that sounds horrible. But I think I just wanted to prevent that this wasn't happening...again. Again we were buying pink decorations, balloons and having a cake made for our daughter who isn't even here. It's so unfair. All I want is to be stressed out over wrangling her, invites, family, friends, good, presents-all the craziness that planning a birthday party entails. But instead, I plan a memorial birthday, slightly worried that people will think we are crazy and that nobody will celebrate with us. 

But once again we were beyond blessed with all of the friends and family that came to celebrate her birthday with us. We sent balloons to her in Heaven and had a beautiful cake for her. This year everyone chipped in to have her name included on the new Angel of Hope monument being placed an hour north of us. Her grave was beautifully decorated by my best friends yet again this year. It really was a beautiful day.

For her birthday week we encouraged many to perform RAOK in her memory from the 6th - 12th. Once again I was blown away from how far Avery reached people. From the west to east coast of the US, Canada and in between, we heard from those, who even though they had never met Avery, were touched by her story. Finding positive focus during such a hard week really helped me through. 

The 12th was once again the worse day, well actually it really was the 11th. There is something about knowing that on that day just two years before, she was still with us, still in our arms. It's still so hard to wrap my head around how fast things can flip upside down. Nothing is guaranteed. Life is not predictable. And that day is the ever constant reminder of the fragility of life.

Now we enter another year without her. More holidays, more family events, more emptiness. This year I will strive to bring more good into this world, to keep her legacy going and to be the best mom to my two beautiful girls.