Diagnosis #3.

There are just some days where you need to get everything out.

It's one of those days. Today is Diagnosis Day, the day that I first felt my world shatter into pieces. The first time I screamed and raged against God for doing this to my baby, to my family. The first time I felt so completely broken that I couldn't see beyond the death of my child.

It's also Eleanor's six month birthday. My rainbow baby.

I remember the anguish. The feeling of my heart being ripped out from my chest.

This balance, between extreme happiness and extreme pain, is so difficult to walk sometimes. I sobbed this morning, after my babies left for daycare. Because while I'm celebrating my daughter's half-birthday, I'm also mourning the day we found out our little boy would die.

I hate this club. I wish I had a silly little two year old to chase around, who pokes at both of his sisters and whips off his diaper at a moment's notice.

It feels like reality shifted that day, it feels like the day that everything in life really started to go wrong. Our blessed life took the wrong path, and it led to disease and loss and heartbreak.

I'm just heartbroken still, I guess. I don't think I'll recover. I don't think that I'm meant to recover from this at all. I think that the joy that I feel exists in the whole pieces that are left - the cracks are there to remind me to embrace the joy and the love.

I'm still angry with God. I don't even know if He exists anymore. Sometimes, I feel like I can see his presense in life.. but then I feel that ache. The hoarseness in my throat from screaming in agony and denial, the ache in my pregnant knees as I knelt in a chapel and begged God to spare her life and just let her PLEASE WAKE UP, the betrayal that I felt when another diagnosis came on my son's birth/death date.

I feel like it's all connected, in a macabre fashion. I don't know - I'll never know. I just need to get it out. I need to cry and look at my life in the reflection of my tears and remember that, no matter what, we've been blessed.

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.

Frustrations

I'm trying to work out my frustration. Excuse me, while I figure it out narratively.

Four years ago, we purchased a lovely little home. I was hoping it'd be our forever home. It's not quite in the best neighborhood, but, you know. It's cheap and adorable and I was tired of waiting to buy a home. I thought - hey! We can be cool urban parents!

Since then, I've buried my head in my own optimism. I love my house; my neighbors are wonderful. The others ones, though? I've had a drive-by shooting just one house away; four people shot three houses away at the gas station on the corner. Today, a woman was shot in the chest as she tried to protect her teenage kids.. seven blocks from where I am sitting.

I can't take the dog out without pepper spray. I can't let Amelia go outside barefoot -- needles, broken glass, unidentified human substances.

The neighborhood is built on limestone -- so water pours in through the hundred-year old foundation and bubbles up from the floor. It never quite floods, but it never quite dries out.

It's a beautiful house. Original floors, beautiful built-ins. A staircase to flaunt on prom night.

Plus, prostitutes and drug dealers screaming at each other at all hours. It's never just quiet -- screaming, fighting, barking, or the THUMP THUMP THUMP of someone's bass. Oh, and gunshots -- weekly if not daily.

I can't do it anymore. I just can't. However, I'm stuck. I'm stuck -- after Henry died, I pulled back from reality. I would have died if not for Jason and Amelia. I didn't do ANYTHING except for manual labor - to keep my mind from wandering. I didn't take calls, I barely paid my bills.. I just sat there and smiled blankly. The only thing that made my heart beat? Amelia's smile. I went a bit crazy - she's go so much stuff, I just kept on buying her things to make her happy.

And now, I'm maxed out. I'm behind on my mortgage. I've lost one of my credit cards and can't access my account to begin to pay it. I'm terrified of talking to people sometimes - especially the bank. They ask why -- and then I sob uncontrollably. I can't let that happen to myself again. I just don't know what to do at this time. I closed one bank account (Wells Fargo) because they consistently charged me fees -- $1300 in a matter of months. That's two and a half mortgage payments for us!

My bank card was duplicated, somehow. Someone went on a shopping spree at the Office Max in Monticello. I'm heartbroken - and financially broken. I feel like these thin walls that separate my family from the violence in this neighborhood are closing in on me. I want out -- now. I just want to pack my daughter up and move someplace where I can breath again - where she CAN go outside barefoot. Where I don't have to worry about a drug dealer crashing up onto our boulevard and taking one of us out (or one of our cars -- again. Yeah, that's happened, too).

I just want a safe place for my daughter to play. A place that we can go outside and breath.

I'm looking at rentals -- and my credit isn't too good. What's the use in paying $60 to be denied? Especially $60 that I don't have for another week or so -- whenever my bank gets back to me about my fraud petition.

I can't breath anymore. I'm lost, and I just want to wave a magic wand and fix everything. I don't know where to turn for help. I don't even know how to go about asking for help.

I found a new interesting fungus in the basement last week. I'm starting to wonder if Henry was doomed because of this house? Exposure to some century-old chemical, or spores from the constantly-wet basement? I'm scared that staying here will get us sick.

I don't even know if I should publish this. I'm just at the end of my rope -- I want my girl to be SAFE. I throw myself on her at every firework and gunshot. I walk into my house and my anxiety skyrockets. I've lost Henry - I'll do anything to keep Amelia safe. I just don't know how to clean up my own financial mess.

I just posted a link on my Facebook - One Less Second Grader, found here. It's a piece by Angela. She's been an amazing guide and friend since we lost Henry.

I agree so much. I wish I could go back to when I only felt happiness for other people. Birth announcements, pregnancy photos, first steps, first first firsts..

There's a sick sort of jealousy that seems to bury itself into the forefront of my brain - it's nothing that I want or relish. It's not a jealousy of the kids - no!

It's more like.. a jealousy that people can walk around in life without knowing this pain. So many can walk around in a safe bubble, where babies don't die. Where a single pregnancy test means a happy baby nine months later. It's seriously a bubble - you can't really understand what is inside until you pop it, and then there is no return to normal.

My bubble popped. I check Amelia for breathing every few hours. I don't sleep well. I have terrors of car accidents, stray bullets, falls. We went on a Ferris Wheel and I nearly broke down - I kept on seeing the possibility of her falling. One of my babies died; the other can, too. Of course, I will do anything to prevent harm. But I know that I can't hover and bubble wrap her -- I have to let go. It's seriously an exercise in restraint.

When I see families with two kids - especially a daughter and a baby boy - I die a little. I wanted that for us so badly. I wanted us to be a family. I wished and prayed so hard for a miracle. I begged every morning, to a faceless god. In the shower. Driving to work.

It probably sounds horrible, and bitter. But I promise you that I am anything but - I do feel a warmth towards the announcements, and a relief that your bubble hasn't been popped yet. I don't wish this on anyone. These things just tend to tip me towards my own sadness, my darkness.

Who is the New Katie?

This journey has changed me. I wish I could describe it - but, I can only convey each day's challenges and the reactions to them. I can't tell people how my soul feels like it's been twisted and wrung out. I can't describe the anxious, nervous, bone-scraping feeling I get trying to communicate with other people now.

I have a tribe that I can talk to - sort of. I have one person in my tribe that I can communicate with incredibly effectively. And my husband, of course. But when I have to talk to strangers, I get -- itchy in my bones. I slip into the plaster mold that I've constructed for myself in the last few years and just get through the interaction.

I probably look completely weird, and utterly fake. Otherwise, I get caught off-guard -- by simple things. Silly things. The other week, I was at a social function with friends. We were seated at a table with strangers. Initially, I was terrified - but I quickly relaxed and realized any conversation would be centered on the function, and not on getting to know each other on a personal level.

Somehow, "How many kids do you have?" flew out of someone's mouth and *thunked* through my throat and into my heart. Like a well-placed arrow. I panicked, and said one.

Then I sobbed inside of my emotional plaster cast, because I felt like I betrayed my boy. I wanted to be strong enough to say that I have two children -- but this would lead to more questions, and I wasn't emotionally prepared to open up to strangers that evening.

I know, one day at a time. But it's frustrating.

Henry's Heaven

I've been having a tough week. I spent the entire weekend with my girl, which is fabulous.. But, in the between moments, when she's napping or elsewhere, there's this feeling of swallowing sadness.

I'm full of it, and yet I keep on swallowing this feeling down. How much can one person hold? It feels like this infinite pool that just absorbs it all.

I feel it even as I tickle my little monster, and as I roar as mommisaurus. It's always there.

There used to be a time that I thought that, maybe, it would go away. But now.. It's only been a year, but I don't think that the drowning ever ends.

I named a star. For Henry. It's actually a double star -- two stars locked in a dance of gravity, shining as one. One star is his shining light - the other is the pieces of ourselves that he took with him when he left us.

http://palebluedot.whitedwarf.org/stars/6859813

Ticking By

There are days that I go through the hours without thinking. And then it hits me - my son is gone. There's no changing this. I'm having a rough week.

I can't believe it's been over a year since we saw his face. I don't want to believe that time has passed at all; I despise that clock for taking me, second by second, further away from the last moment I held my boy. I can smile and say that it's okay, just to get me through, but it's not. It's not okay.

I'm angry at the world today.

Shadow

I used to think that maybe our souls were like shadows. More specifically, like shadows from Neverland – Peter Pan’s shadow. 

I imagine my own shadow is more translucent now as I struggle to connect with others – more than just the shallow passing words. There is a cannon-blasted hole where my chest should be, the emptiness echoing with every chime from my still-beating heart. That’s the hole that you left behind. My heart beats on, because it must, but there is no fixing this ragged, ugly space left behind. This desperate, yearning, sacred space.

I'm feeling all used up today. Crinkled along the edges, wilting. 

Lessons

I'm lying here in bed, worrying about how long my grass is right now.

Seriously. It can wait until tomorrow. The last few days with my girl have been wonderful.

Today is a gift. Embrace it, enjoy it all you can. Make as many happy memories as you possibly can. Feel joy, and spread joy.

I feel like I'm learning these life lessons more and more now that I realize how fragile life is - how so much can change in an instant. I'm doing my best to dedicate my life to making sure Amelia's beginning is good. That she is good.

We were at a lovely wedding tonight. There were speeches read by the bride and groom's siblings.

Each speech was expressing thanksgivings for having a brother/sister along for the ride. For having a best friend and guinea pig.

Yeah, I kind of melted. I cried. The newly married the couple are wonderful people who will be very happy, that I have known for a very long time. It was beautiful.

But I still felt such sadness that Amelia wouldn't get that. And fear, too.

Anyways, it's much to late and surprisingly difficult to organically blog on my phone.

Advice

I think of myself as a very steady personality. I'm not volatile, I pretty much go with the flow and maintain a happy face. It's my heart that has it's good and bad days. I've realized that I really need to take care of my heart first, before I try to keep up a social facade.

I read this today, from The Carson Project (http://www.facebook.com/thecarsonproject) "When I let you know I'm having a bad day, that I'm grieving and I just can't make it, I can't worry about how you take that. My healing depends on it. My healing depends on my honesty. My healing depends on who I am and what I am, and if I can find my own truth.."

That completely rang true for me. I can't worry about how anyone will take my truth. I have to be completely honest about it, and I can't let my pride stand in the way of my healing. By telling people I'm fine, it's like I'm giving them permission to rip out my stitches. And then I'm recovering for days after, trying to emotionally limp through each and every day. 

That's the best advice I can give anyone these days - be honest. Be honest with yourself, and then with everyone else. Don't hide your grief or your pain for anyone's benefit. You need to learn how to live with it. You need to crawl before you walk - and grief is such a burden, you really need to learn to balance it in your life and on your shoulders. 

Amelia was picking dandelions in the back yard (don't worry, we have a ton, ha!) and making wishes. I asked her what she was wishing for today - she said, "my sister!"

Oh, how my heart clenched. She then made wishes for her baby brother, but a lot more for her sister. She's been talking more and more about Henry lately. She likes the idea of having someone to play with any time. 

Whispers

I've been toying with the idea of a tattoo since Henry was born.

I remember laying in the hospital bed, looking out the window at the trees. Sparrows flew in and out of the branches during breaks in the light rain. I watched the rain and the birds every time they took Henry from me - either to check his stats or to pass him to a family member. When he wasn't with me, it was hard - I was completely drugged up, and I stared our to keep from crying. We had no idea how long we would have with him.

Since he's been gone, I've seen sparrows as little messengers of love from him. Little loves - kind of in the same fashion that people say that a found penny is a penny from heaven. I went to my tattoo artist, put down my deposit, and she drew up Henry's Sparrow. It's beautiful, and it's one of the few tattoos that I have that will have color. It's going to be a watercolor tattoo. I love the style, and it's kind of perfect for him - washed away but still making an impact.

Yesterday was rough. I was mad. I felt cheated that Jason couldn't celebrate his second Father's day as a father of two - that Amelia would someday feel as lonely as I feel without a sibling. I want her to connect with someone, to have someone to look out for - and to look out for her. I want her to have a sibling in every sense of the word. I know how lonely life can feel without it.

So, I was going to drop Amelia off with grandpa, and walk over to the tattoo parlor by his house. I was going to throw my money down and just do it. Damn the consequences, forget the bills to be paid and the mortgage, the broken side door, the broken windshield, groceries.. I didn't. I played along with life's little game and just went with it. There's so many bills that we're behind on, so many more responsible places to waste our silly money.

But this morning, Amelia called to me from her room. She was in there, getting ready for the day (her responsibility is to get her jammies off and into her laundry basket), and she yelled, "Mama! Do you got your birdie tattoo yet?"

I need to be absolutely clear - I've never taken her with me to see my artist. She's never heard me talking about Henry's Sparrow. I've never said it out loud near her, she's never seen the draft - she should have absolutely no knowledge about this. At all. I couldn't breath for a full minute. I just told her that no, I did not have that done yet.

In the car, I finally asked her where she heard about the birdie tattoo. First, she said Zack - because everything is Zack. Then I asked her again, and she said, "Baby Henry, he's happy."

I lost it, internally. I try so very hard to keep it together for her. But my eyes filled and my heart swelled as I replayed her words in my head. He's happy. He's happy. Mind you, she thinks that the opposite of sickness is happy. But still - he's happy. I wonder if he came to her last night. I.. I just don't know. I'm floored.

Maybe she won't be as lonely as I thought. She might not be able to look out for him, but he can look out for her - and through her, Jason and I.

Because now, my end goal is to get my tattoo started. My artist moved, I'm going to email her and set up a time. This is for me, and for Henry.

I've been melancholy over the past few days. It hasn't been dragging me down; but my mind is in the past. We attended Charlotte's memorial last weekend. A year to the month from Henry's memorial.

Life is funny sometimes - both funny, ha-ha, and the bang your funny bone type. Sometimes I start to see how everything is connected, and then I start grasping at those connections to find that they are as fine as spiderwebs. These connections fall apart before I can even grasp at them.

I saw this statement in a store over the weekend: "There will always be a reason why you meet people. Either you need them to change your life, or you're the one that will change theirs."  I'm starting to believe in this again; almost beginning to acknowledge my heart's belief in God again. It's been a hard road, but the belief is returning slowly. It hurts, too. Like when your foot falls asleep? That pins and needs sizzling sensation, but in the soul.

It started when I had a dream about my grandfather. He was playing with two kids - my son, and little Charlotte. Henry looks like Jason, but he has my eyes - the shape. They're as blue as Amelia's. He has my hair, the curls, but the impossible white that will eventually turn to brown. A lot like his sister's hair. He has a dimple in his left cheek. My little boy is chubby and elfin and perfect in Heaven. His friend, Charlotte, is playing with him - so much like her brother plays with Henry's sister. Charlotte looks so much like her brother - but her hair is brown and curly/wavy, like her mama's. Her eyes are a little more green than brown, but still. My grandfather was playing with them, they were in the background of the dream -- but they were there. I woke up with a smile.

It was a nice dream.

But back to religion and belief - I don't know how I would have made it through the last year without my dear friend, and a wonderful group of women that I've met because of our loss. My dear friend, Charlotte's mommy, and I never really connected before - our husbands are great friends, but they moved away before I got to know her. They moved back just in time for Henry's memorial. And then, this winter, they found out about baby Charlotte, and her diagnosis - so similar to our Henry's!- and we were able to listen, and understand. Now I count her as one of my dearest friends, a bestie, and I can't imagine life without her and her family. They've become part of our family.

These connections? They feel like God to me.

I feel bad for not writing a post for Henry's birthday/anniversary. His first year in heaven. I was distracted - we found out my mom has cancer on that same day. I was a mess.

Now, for happiness. I had a discussion about happiness with a friend over the weekend; about how we're promoting it endlessly. It seems to me that there needs to be some clarification for our children: happiness is in the moments. It's not a static state of being. Our children need to be free to acknowledge all of their emotions, not just the ones that please us. It's something I'm trying to teach Amelia -- she enjoyed her day at the carnival this weekend, but she got scared on a ride she tried out. She screamed her head off until they let her off the ride. We didn't shame her in front of the other kids - instead, we gave her hugs and told her that it was all right to be scared sometimes, that everyone gets scared. We told her that she was very brave and we were proud of her for trying the roller coaster (kiddie coaster; she was just tall enough and begged to do it - maybe next year!). I'm doing a 100 Days of Happy project on my Facebook; but I'm not trying to be happy all of the time. I'm sharing things that make me happy for the moment (it's probably going to be 95% Amelia and Jason!), but I'm going to try to be very clear that my end result is just to be able to acknowledge my emotions when I am happy.

I'm trying to live fearlessly; except when it comes to my daughter. That's a different type of fear. I'm living fearlessly for myself.

Mother's Day

I'm being bombarded with Mother's Day commercials and propaganda.

This is the best and the worst day of the year. I get to celebrate my children, while mourning for one.

In just under two weeks, it'll be Henry's first birthday. I realized that earlier this week, and it took my breath away. My mind suddenly started flashing images of what should have been. Jason and I should be planing his party, renting out a space, holding his chubby little fingers as he takes his first toddling steps. Amelia should be busy teaching him to be naughty and how to get cookies for breakfast. We should be elbow-deep in diapers and having family snuggle time. We should be laughing, crammed into our little house, full of love.

Dammit. Dammit. Dammit.

Being in a completely different place may be helping. I've got wonderful support, but my chest still aches. My arms ache to hold him. I hold babies all the time - but none fit the space where Henry was supposed to be.

We're going to make bandanas/headbands for the Faith's Lodge 5k next weekend ( http://tinyurl.com/walkforhenry ). I chose a bright yellow color, to remind myself that he's here, in the sunbeams. I try to imagine him snuggling with my grandparents in heaven - but I just keep on visualizing what he would have looked like today. His hair would be brown, and his eyes would have started to turn to green. He'd actually start to look more like Jason, but his hair curling would curl like mine used to - so unlike his big sister. And this is why I can't breath anymore. My chest aches, my arms ache.

I don't know how Mother's Day is going to hit me. I've been dreading it since we first learned of his diagnosis.

Nights like this I can't handle.

Every night this month, I cradle Henry's urn and cry. I think it's the Easter story that everyone rejoices in.

Even if there is eternal life, I am spending the rest of my earthly one without a piece of my heart. Every night I've been sobbing, hoping for a miracle - a ghost, an angel, a saint - anyone to tell me that it's all true; that it's going to be all right.

I wish so hard at these times. I wish so hard that my heart breaks again, and again, because I know it's so silly and stupid.

Holding the Memory

I'm feeling very driven today.

Now that I'm in a different work environment, I feel like I'm healing more. I'm absolutely crying less - significantly less in the last four weeks. But I'm still nervous about our year anniversary. I don't want to lose it. I want to keep my son's memory in a happy corner of my heart. I don't want the sharp sting of tears to mar the beautiful day that we were lucky enough to meet him.

I want to celebrate that day; I'm yearning to celebrate his memory.

Now. As to how - it's a Wednesday. May 21st. I'm almost thinking a benefit, or a fundraiser - something to financially benefit the organizations who helped us so dearly. Without Now I Lay Me Down To Sleep, I would NEVER have these gorgeous photos of my son. I wouldn't have thought to take any. And Faith's Lodge.. goodness. I can't begin to explain how much we started to heal there.

I just don't know how to organize anything like a benefit. What would we even do? I'm overextended as it is; do I dare take on more? I feel like I can. All I need is a good binder. I'm nervous about asking for donations; asking for help. I'm not one to ask a lot. I pride myself on being self sufficient - much like my toddler, I can "do it myself!"

I want to do this - but I don't even know where to start. Any ideas? Anyone?

Church

I keep on looking at churches. There's one that I've promised to visit, a number of times, just to check it out. Sunday comes -- and I just can't. It's not that my faith is shaken - I'm not quite an atheist yet - but.. I'm angry.

I see people talking about God's plan. I hear the opposite side, that God doesn't have a plan, s/he is just our creator and best friend, laughing with us in the good times and crying with us in the bad, but never leaving our side. To this I say - yeah, sounds nice.

Then I start thinking about miracles. Just how much do you have to pray for a miracle to happen? How much do you have to believe? I prayed for my son, I cried and screamed and begged. We didn't get our miracle. Why? Were we not good enough? Weren't we nice, generous people? That's enough to make you hate whoever it is that is in control.

And then I'm told, 'everything happens for a reason.'  Bull. I didn't sign up for this.

I still feel like there's.. something. I don't know, I'm not pretending to know. But if this force of the universe is really in control? Smiling benevolently on some and not others? Then I'm angry. I'm engraged. Honestly, I think this relates back to my Mary rant from December.

This is why I've been avoiding church. The anger has been building, and I've finally acknowledged it. I'll probably lull myself into believing that my own God is just someone to hold us while we're falling.

But I'm still angry, and hurt. I'm coping much better now, but apparently my heart is seeking to place blame somewhere, still.