Day 9: Family

My family has been through hell.

It seems like it started with Henry. My son, my only boy. Carrying him was both the best and worst time of my life. We were so excited for our boy to join our family - and then ripped apart when we found out that he just wouldn't. I still can't think about those months. I remember screaming, sobbing. I have to block it out to function.

I remember his little breaths, his warmth in my arms. I remember the fear as his feet and hands started to lose color. I remember the terror as he passed. That's when I disconnected fully with life. I've been disconnected since, once finding sparks of connection with my girls, and sometimes my husband.

I can't connect with my family. Even after we've lost another child in our family - my sweet, amazing niece. P was the smartest kid her age - I was always so blown away by her intelligence. And her heart - she loved so fully.

God, I miss that kid.

But I digress. Even though I've had a taste of what my brother and sister in law are going through.. I can't connect with them. Really, with anyone. I feel like my eyes glaze over most days, and I just flutter along the top of issues. I used to be an extrovert - now I retreat to small places, small groups. I don't do well in large groups, or in deep discussions. I can exchange pleasant conversation, but that's it. Let's talk about the weather some more, because it's a mindless topic and my mind is too damaged to focus properly.

My attention is absorbed on my children, so that I don't have to function. If Eleanor cries from across the room, I'm able to escape anything to get to her.

I'm beginning to worry that I won't ever be able to connect to people again. I have so many friends; but I've lost that pull with most of them. I've lost the ability to concentrate. I've lost my sense of time.

I want to feel again -- all the time. Is it normal to only feel with my surviving children? I look into their eyes, and it's my salvation.

It's been 871 days since Henry breathed. Two years and nearly five months.

Capture Your Grief: Day One

Day One – Sunrise

I watched the darkness this morning, and as the trees were gently revealed by the first hints of light, my mind moved to my son. Henry. I was nursing my rainbow, Eleanor, and thinking of her big brother that caused her to become. We were so thrilled when we found out about Henry. We were completing our family. Amelia would have her sibling, and we’d have two wonderful children to raise and laugh with through our days.

But then, Henry’s brain didn’t form as perfectly as the rest of him. In fact, it stopped right around the five week mark. He had a condition called Holoprosencephaly, and it would cause his death. His brain never developed the mechanisms necessary to support his life. But, he had me.

I was his life support. My body kept him growing, kept him alive.

As the edges of each leaf became visible, I cried. Big, slow tears. Bittersweet tears. When he left us, after only fourteen hours, I didn’t know how to survive it. I didn’t think it was possible. I disconnected. 

My only connection to the world was Amelia, and strangely, my anxiety. I kept worrying about others. How was Jason doing? My family? How did they see me? 

I still feel the disconnect. Like I go through the motions, and glaze over everything. I'm just.. floating through life. I only feel the connection when with Amelia, and now, with Eleanor. I feel the connection with Jason, when we have time to actually talk. I've lost the moment. It doesn't feel like real life. 

It really doesn't feel like real life. I feel like I'll still wake up. I'll wake up, and Henry will be fine. Persephonee will be laughing with a gap in her mouth where her baby tooth fell out. Chris would be publishing his third book. I'd be chasing a toddler while wearing my newborn and joking about giving one of them away. 

Sometimes, it feels like if I try hard enough, I can get back to that alternate reality. One where we haven't lost so much. Henry in 2013. Persephonee this year. I don't want to lose any more, and I'd do anything to have these two back. 

Amelia started doing a preschool night at Bobbi's church, on Wednesday nights. She likes it. But last night, she asked about the concept of death. It's so hard, because there's so much I want to explain to her.. but I can't. I try to explain it in simple concepts, and I try to keep from saying that Heaven's a great place. I don't want her to ever want to go there. It's a restful ending, not a carnival filled with games and cotton candy. 

The sun rose, and the day seemed dull. Eleanor fell asleep, and was snuggled in her bassinet. I sat on the edge of the bed, watching the still morning. Without my kids, I don't know what I would do. I would feel this numb all the time, and I don't want to live like that. 

Dreams.

I had a really messed up dream last night.

If I write it down, it won't torture me in my head any longer. Right?

Somehow.. how is it that all dreams I have pick up in the middle? I don't do beginnings in my subconscious, I guess. My mom, sister, and I were following this wicked woman through a fun house/warehouse/ikea from hell place. She had something of ours. I think it was something of Persephonee's.

I only say that because I felt an urgent need to get it back, but not for myself. I can let things go for myself -- but I felt like it was for my brother and sister in law. It was something that they should have, perhaps not needed. Like P's shoes. Something.

The first place was dark, but not bad. Second stage was pitch black and our phone flashlight apps would crash/never start. In that area, a huge bat dove towards me. I caught it at both wings, and tried to free it through an open warehouse door into the night. But there was some sort of force field that killed the bat as it tried to escape. That angered me - something innocent to the evil woman's scheme shouldn't have to die.

The third stage was a horror-movie Ikea, or general department store. We found grave stones -- my sister found Rob and Henry's. But.. you could open the stones. She opened Henry's and picked him up. She snuggled him, and offered him to me to hold again.

That's when I knew it was hell. Because I knew that I wouldn't be able to let him go again. I knew that whatever you wanted most in life would be there, to keep you from going back. It's like Orpheus and Eurydice. I feel so guilty for not at least trying to hold him - but I knew, I knew I would have to give him back again -- and it would be even worse. I don't think it was really him at all in hell - but just an image to draw me in further. Oh, my boy. I wish I could have you back.

I woke up choking on my tears. I don't even know if we succeeded with our 'quest'. My arms just ached to hold him again.

Disney

It's been one month since I last laughed with Persephonee.

One month today.

My sister and I took the kids to see Cinderella this afternoon. I wasn't prepared for how emotionally beaten I'd be after this movie. It was gorgeous, and Amelia was enchanted. She looked at me in compete wonder when the pumpkin became a carriage. I don't think I've seen such an amazed look on her face before - it took my breath away.

Thank you, Disney, for that moment. And because this movie embodied my niece.

Have courage, and be kind. That's Persephonee.

When even the happiest families find tragedy and despair -- that's us without her.

When pain and grief become tender beautiful memories - someday.

Persephonee was a princess. She loved surprise parties, teaching, playing. She was so much like Anna in Frozen! I want Amelia to emulate her, while choosing her own path.

Even while I cried, I was so thankful for this moment, Disney. Because my daughter, my nieces and nephew, they love the magic that you create. They are inspired and transported at the same time. It's amazing.

We never got to take all of the kids to Disney World together. It was supposed to happen, once everyone got old enough. Our brilliant, happy family was going to storm the castle and create fantastical memories.

It never happened. It will, but we're missing a key player.

We'll go, eventually. Once life allows us to settle and smile -- and once we save the daunting amount! -- even if it's bittersweet.

When we go, we take her with us. Her spirit will ride in the Dumbo carts, the teacups. In every surprised look and giggle. In every tear we, the adults, feel sliding from our eyes. In the joy of the park.

Thank you, Disney. My daughter's amazement at cinema magic today was just the beginning.

Bargaining

Here's the thing.

Last Sunday night, my niece collapsed. She's five and a half. A beautiful soul.

I got the call, made arrangements, and raced to the hospital. I was worried, but not terrified. Not until I walked in.

It was bad. Her throat just.. closed up. She was too long without oxygen. The doctors told us, about 4am on Monday morning, that her chances of surviving were minimal.

We all broke down. We didn't have anything else to do. I saw this shining light just a few hours ago, she was so proud of herself. It seems eerie and wrong. I still feel like I'm in a really odd, horrible dream.

We kept vigil at her bedside, so many people who love her, and my brother and sister in law.

We held her hand, kissed her, read her stories, kept her favorite movies playing constantly.

And then the time came to give her away.

I didn't realize that this would hurt worse than Henry. I didn't suspect. I'm back into my emotional coma, doing my best to function and get through each situation.

Per was my niece, and a week ago she was running and laughing with Amelia. She'd just had ice cream and was teaching Amelia something or other.

I spent a good amount of time in the chapel on Sunday night. I cried, and begged. I couldn't imagine a world that would allow our family to lose two children in two years.

Losing Henry should have been our "dues" -- our token for ensuring the safety of the rest of our children. It shouldn't happen again, worse than ever. Senseless.

The odds aren't against us. 8 in a million with Per. But.. why did it have to be our family again? Why did it have to happen to my brother? He's the man I've admired for years for his endless patience and limitless love for his girl. Ever time I saw them together, I'd just marvel at their interactions. He never raised his voice, and she clung to his every word.

I'm just so angry. And betrayed. And broken. It doesn't seem right. It shouldn't have happened to them, to us.

It shouldn't have been our family. It shouldn't be my vibrant niece in the little white casket.

Love your babies, your friends, your family. Give in to chocolate milk at bed time. It's true that the odds are in your favor -- but they're still odds. It can happen to anyone.

And - don't take that as a threat or me trying to fear-monger.  But the truth is, you NEVER know. None of us do, or will. So love while you can. Enjoy the wind, the grass between your toes, and every cloud in the sky. And know that it's enough.