Two minus one

I first saw them right before Max's first birthday- kid-sized overstuffed armchairs. You can ever personalize them! This past summer, about mid-June, I decided to get the kids matching chairs. So cute!

I almost ordered them on Saturday, Oct 23, two days before Ellie died. But, as anyone who knows me can testify, I am a horrible secret keeper (and present secrets are the worst!). So I didn't order the chairs that day, I thought I should wait until closer to Christmas.

A couple of weeks ago, I decided to still order Max his chair. I knew it would be sad when just the one chair arrived. And it was. Today when I put his chair together (yeah that's right, I couldn't wait until Christmas...) and sat it in the playroom at the end of the bed, all by itself, I thought, there should be two. Max's chair is chocolate brown. Ellie's was going to be pink with brown ribbing. Dave and I can just picture them sitting in their chairs watching "Wonder Pets" together in the morning. Ellie would have sat in her chair, so proud, looking all around and slapping the arm of the chair. She would probably be dressed in warm footies, her feet wouldn't touch the floor so her legs would have been a-kicking... She would have loved it, but probably not as much as we would have loved watching her sit in it.

Without her

Sometimes it just hits. Like driving straight into a brick wall, full force. Except I'm pretty sure that wouldn't hurt as bad.

Tonight I was rocking Max and reading "Hop on Pop" before bed. When mid-story it hit. Ellie is dead. She is not coming back. My baby got sick and I couldn't make her better. She is gone. I don't get to hold her anymore. I can't take care of her anymore. Ellie isn't just at my parent's house. She won't be back. I have to stay here and keep going without her.

Even though we have been "living" for 34 days without her, it's like I am feeling her absence for the first time. It's a new heartbreak every time. It hurts more than it did the day she died. I wonder if that day will always just seem like a bad dream or if it will ever feel real. This is almost worse than five Sundays ago, when it all started. At least now I am sure she's not suffering. Now, it's just us that hurts.

And nothing can make the hurt go away. Tonight, nothing helps. Pictures, videos, her blankies, her giraffe... nothing. Even my new friend, Valium, won't make it go away. It's here. She's gone but the pain is here. That's a shitty trade. We arrived at the hospital with a beautiful baby girl and left with a huge hole in our hearts that nothing will ever be able to fill.

Sometimes I swear we must have done something to deserve this, to feel like this. What could we have possibly done to deserve such a punishment- to be without her for the rest of our lives?

Tonight, I wonder if you can actually die of a broken heart, because sometimes I think I am going to just quit breathing. Like my body is just going to stop working, like it doesn't want to be without her either...

"Why's it have to go from good to gone.

Before the lights turn on

and you're left alone..."



Look how pretty my girl was...



Angel Girl

Elle Belle,

I miss you. I just miss you.

Love you forever and ever,

Mama

Changed

Beautiful, beautiful girl

Dear Kohls, Please do not place the toddler boys pjs with the pink baby girl pjs. I don't want to have to hold my breath while I shop for Max's nightwear. 

Dear Cash-Register-Traffic-Control Lady, Please do not look at my stroller full of merchandise and ask where my baby is. Do not tell me that there are usually a lot of babies out doing their Black Friday shopping but not this year. Don't ask me where they are this year. Don't ask me where my baby is again. Because you don't want the truth.

Dear Old Navy, Please remove all cute little girl's clothing from your stores so that I may one day return to your retail location.

Dear Target, Please take all pink or purple clothing, especially the small ones, any tiny Christmas pjs, socks and Santa dresses and put them in a trailer outside in the parking lot. Please add all pink lullaby singing seahorses, pink & purple tea pot sets, frilly dressed dolls and pink ride-upon cars. Thank you.

As I looked around at all the happy, crazy shoppers today at the mall, I realized I'm not like them anymore. Yes, I survived shopping today. But it was really hard. I looked around at all the things I would have bought for our little girl to enjoy on Christmas morning, and it hurt. It was sad. I wonder if it will feel like this every year from now on, if it will hurt like this...
I think it will. I don't see how it could not. This year it's the Santa dress, but next year it will just be something else. Next year, dolls. The next year, princess dresses and tiaras. Then arts & crafts supplies. In ten years, little earrings & bracelets. It will always be something. There will always be something missing. Ellie will always be missing. We won't ever be like we were before. We are forever changed.

Thankful...

I love this picture of you- It's so you. Cute, adorable, squeezable.

My Sweet Girl,

Happy first Thanksgiving. Even though I just spent the entire day without you, I still can't believe you weren't here for your first Thanksgiving. Remember the little "Thankful for Mommy" outfit we bought at Kohls in early September? That day when you and Maxer were both throwing fits? I took it out of the closet today and looked at it. You would have been so adorable in it. Especially with your turkey hair bow that we picked out on our girl's night out with Ma and Grams. I clipped your bow to my shirt today.
I hate that in order to be close to your body, we had to go the cemetery. The cold, freezing cemetery. We should have spent the day chasing you around Grams & Gramps and trying to keep out of the way of the big kids. I should have laughed when you spit out the mash potatoes I tried to feed you. We survived today, but it was so obvious that you weren't there. We decorated Christmas cookies- I made sure to decorate some angel and bell cookies with purple and pink frosting just for you.

It's very easy to be mad at what we are lacking right now. It would be so easy to say we have nothing to be thankful for this year. And there is a part of me that feels that way. You have been gone for 32 days, we have an autistic two year old, a kitchen floor that is ripped apart and an oven hanging out in the middle of the floor. But truly, we have a lot to be thankful for.

I am so thankful that you are my daughter. 
I am thankful that you were here for those nine months and nine days. I am thankful that I get to be your Mama and that I could hold you whenever I wanted to during those amazing nine months.
I am thankful for your smile, your fuzzy head and chunky thighs.
I am thankful for your silly giggle and your "hey look at me" holler.
I am thankful that I don't think you suffered that last horrible day.
I am thankful for all those doctors and nurses that tried so hard to save you.
I am thankful for the smell of you on your giraffe. It's fading fast, but it's still there. 
I am thankful for Maxer. I am especially thankful for those times when he lets us into his little world. 
I am thankful for the hugs and cuddles we get from Max.
I am thankful for his amazing laugh and big smile and one dimple.
Sadly, I am thankful for the Wonder Pets. That stupid show made you just as happy as it makes Max.
I am thankful for your Dada. I don't have to tell you- you know how amazing he is. He has taken really good care of Maxer and me since you left. I am definitely thankful for Dada.
I am thankful for our families. They have kept us from completely losing our minds, kept us fed, and kept us company. They have done the things that we can't bring ourselves to do yet.
I am thankful for our friends. For their daily calls, for their meals, for their visits. Thankful that they listen to me talk and talk, even if they are sick of hearing it, they never say anything. I am thankful that they let me talk about you as much as I want- I want to talk about you.

I would give anything, ANYTHING, to have you back. I won't say that I want you back for just one more hug or cuddle, because that's not true. I want you back forever. I want millions of kisses and snuggles. I want all of our dreams and hopes for you back. We are sad without you Peanut. It's nearly impossible without you here. But tonight, I am going to be thankful for what we do have left and we did have with you.

I am thankful for you baby girl.
I love you forever,
Mama



LOVE



How

Today is November 24th. Exactly one month ago, it was October 24th. Exactly one month ago, Dave and I signed consents for the surgeon to try one more thing. It was about this time of night. It was the last thing they could try. They needed to put an extra cannula in her left groin to try and get more blood out. The doctor told us the biggest risk was that her leg would be permanently swollen. The doctor casually mentioned that wouldn't be that big of a problem IF she survived. Those words were like a slap in the face. We knew she was sick. We knew it wasn't good. But did he need to say that?

They wouldn't let us be in there with her. There wasn't room. They needed to concentrate. I didn't want to leave our girl. She was so tiny. We went down the hall to the room they set up for us. And we waited. We waited for them to come tell us the worse thing a parent could ever hear...

Its been one month since we were there. How is it possible that we were at the hospital with our girl one month ago fighting for her life? How is it possible that she has been gone for a month?

I keep busy- or so it seems to me. I mostly wonder around without any real focus or purpose. I remember once when I was in elementary school a teacher asked a student, "what were you thinking?" He said, "nothing." She said, "you are always thinking something. Unless you are asleep, your mind is never off." Well, I have to say, I disagree. I seriously think that my mind has just been shutting off. There are times when I am seriously thinking nothing. I am scared to think. Right now the thoughts that come are frightening.

The first two weeks after Elle died, I didn't really think about our time in the hospital. It was easy for me to think about our happy healthy girl. Then I went through a time when I couldn't think about her at all. My head just wouldn't go there. Now, when my mind starts going, it's all the bad stuff. It's the hospital. It's the tubes, the machines, the oozing, the swelling, the discoloration. It's the look in the doctor's eyes when he told us she would not survive. It's leaving her unrecognizable body on a big white hospital bed- all by herself. It's the bags of blood, the hospital band on her wrist, her 6 month picture taped to the heart monitor screen. It's the look on the ECMO tech's face when she squeezed more saline into Ellie's small body to keep her alive while our families said goodbye. It's the look on my Dad's and brother's face when they first walked in the room and say her destroyed body. It's her cold, stiff, unidentifiable make-up covered face in her small white casket.

Strangely, I don't see these images as a moving pictures. I don't see them as they played out in front of me. I see them as still images. Some of them I see as if I was standing on the other side of the room. I don't even know how to explain it. It's like I saw pictures of a child dying and I am recalling them. But these are my memories, my nightmare.

Fortunately, or maybe not, I guess I haven't decided yet, but I don't remember some parts of that day. I don't remember walking back into Ellie's room after I said I wanted to hold her one more time. I don't remember calling my mom and telling her to come back to the hospital to say good-bye. I don't remember them taking out her breathing tube. I just remember what her mouth looked like after it was out. When I think about Ellie I do not see her face.

In two hours, it will be Thanksgiving. It should have been Ellie's first. In five hours, it will be exactly one month since the doctor looked at us and said "I'm sorry." I wonder how long it will be before this feels real. I wonder how long it will be before I am not scared to go to bed. One year ago, Ellie was all snug and safe in my belly. Her feet were surely lodged under my ribs. I want that back. Not this nightmare. I wonder, how? How did this happen to us?

My Sunshine

You Are My Sunshine
My only sunshine.
You make me happy
When skies are grey.
You'll never know, dear,
How much I love you.
Please don't take my sunshine away

The other nite, dear,
As I lay sleeping
I dreamed I held you in my arms.
When I awoke, dear,
I was mistaken
And I hung my head and cried.

You are my sunshine,
My only sunshine.
You make me happy
When skies are grey.
You'll never know, dear,
How much I love you.
Please don't take my sunshine away.

 

Love you Baby Girl!

A lullaby, a butterfly and a sunset

Before we took our sweet girl off life support, I asked her to send us signs so we knew she was ok and that she was still with us... She listened to her Mama and her messages to us have been undeniably present.

Ellie died at about 3am on October 25. That night (the 25th) Dave and I were getting ready for bed upstairs in our room. It was about midnight. My mom was downstairs getting ready for bed, everyone else had gone home for the evening and Max had been in bed for hours... Let me first say that each time we put Max in his crib to sleep we start the CD player on his dresser. It plays the eleven lullabys all the way through and then stops. We have been doing this since he was about three months old... So Dave and I were getting dressed and all of a sudden we heard the music in his room start playing, playing very loudly. I went down to Max's room, opened his door and saw he was sound asleep in his crib. His alarm clock was flashing midnight. I turned down his music and went into Ellie's room to check her clock. Her clock was not flashing, neither were the two in our bedroom. Max's music has never once turned on by itself, and never turns on that loudly. It had to be our girl. I think she was checking on her big brother....

After Ellie's burial, I didn't want to come back into the house. I felt like it was taking a big step in accepting she was gone forever and in moving on with our lives. I was literally scared to walk through the door. I bent down to pick up the garage door opener left on the step by the officer that stayed at our house during the services. As I bent down, I noticed a small piece of cardboard. I picked it up and realized it was a piece of her poster boards that had fallen off. It was a small butterfly. I feel like Ellie left it there for me. It was her little way of telling me it was ok to come in the house...

Last weekend, I was complaining to Dave that Ellie hadn't sent me a sign in awhile and everyone else was getting them. I was having a hard afternoon & evening- really missing my girl. About 5 minutes later Dave told me to look out the window. The sky had turned all pink, purple and blue. It only lasted a couple minutes and then it was gone... But a few minutes was all I needed. I knew those colors were meant for me.

Ellie showing Mama that even though she's not here, she is still with us

There are more stories like that. A lot more. Its sounds weird but we see her little personality coming through in these signs. Some are sweet, some are mischievous. I never used to believe in this kind of stuff but now, they are so obvious, I have no choice but to believe them.


Our little goofball

Thank you little Peanut. Keep those signs coming. Mama and Dada need them. Can't believe it has already been four weeks...

All things pink and purple

As soon as we found that our Turtle was for sure a girl, we went to Babies R Us and bought the pink bedding I had been eyeing since I was pregnant with Max. I was soooo excited for all the pink and purple about to come into our lives!



"What?! We're having a girl?!"

I love having a little boy- they do the strangest things. The dirt, rough and tough play, cars, baseball all have their perks. But let's be honest, girl clothes are so much more fun to buy! I would have been happy with a boy too- we just wanted a healthy baby, but when I got confirmation that I was going to get my daughter, I almost jumped off the ultrasound table. As a mother, I was so excited to have a daughter. I have a close relationship with my mom and wanted the same thing with my little girl. Add in all the skirts, dresses, leggings, tights, hair bows, headbands, little shoes... I was giddy!

My mom went and bought GIRLY clothes within two hours of finding out it was a girl!

These were the first GIRL clothes I bought for Elle.

It was about this time last year when we turned the small room upstairs that we were using as an office into Ellie's nursery. My mom and I had carefully picked out the paint to exactly match her bedding. We talked and talked about how to make her room girly and pink without being obnoxious. Then my mom, grandpa, Dave and I broke out the brushes and started painting pink! Dave and Gramps carefully measured out pink stripes. Over time we added her expresso colored crib, changing table & nightstand. I painted letters sage green to spell out her name. We bought small white butterflies to put on the wall above her crib. And one of my favorite accessories- a pink jeweled nightlight. Before Ellie was even born, her closet had started to fill up with small frilly dresses, pink fuzzy pjs, flowered hairbows and little purple shoes.

When Ellie died, I not only lost my child, my baby, I lost my daughter. Her and I will never go get our nails done, never go shopping together for a prom or wedding dress. I will never teach her to put on lipstick or go with her to get her ears pierced. I won't get to give her the "becoming a woman" talk, or explain to her that sometimes boys are just stupid. 

Before they unhooked Ellie's life support, my friends and I painted her nails pink. Unfortunately, the polish was so light and her skin was so dark, they just looked white. So the last time we saw her body at the funeral home, I painted her nails bright pink. Not exactly what I had pictured as her first manicure. I also bought her her first neckalace and bracelet. The funeral director placed the neckalace on her before putting her in the casket. I tried to put the small pearl bracelet on her wrist on but it was too swollen. Instead I wrapped it around her fingers, next to her nuk. A pearl necklace is something you should buy your daughter for graduation, not to bury her in. I had big plans for us, big huge mother daughter plans. Now it's me here, with two boys...

I miss the pink and purple. I miss my baby. I miss my daughter.



As soon as I found at she was for sure a girl, I bought this pink tutu for her first pictures



A loss for words

Absurd. Bizarre. Ridiculous. Surreal. Ludicrous. Unbelievable.... It's hard to find just the right word.

It all happened so fast. In just 25 hours we went from having a perfectly healthy baby girl (or so we thought...) to telling the doctor it was ok to unhook her from her life sustaining machine. It's something you think can never happen to you.

When Ellie's intensivist and surgeon sat down to tell us there was nothing else they could do for her and to ask if we wanted CPR, I think I actually let out a laugh. Not a big belly laugh but a short "HA." When I used to try and understand how my patient's parents felt when they got this awful news, I always thought I would crumple into a sobbing, hysterical pile on the floor. But I didn't- I laughed. I even told the doctors it felt like we were talking about how to best treat a broken finger... tape or splint?? It was the most surreal, strange- I don't even know how to describe it- moment of my life. It's like we were standing over on the other side of that cold, empty room watching ourselves speak with the doctors. It almost felt like I was watching certain parts in slow motion.
It's crazy how easy it was to make the decision to withhold CPR. Well, it was one of the hardest decisions we ever made but we knew what the right answer was immediately. We knew we had put her body through so much already, she was already unrecognizable, we knew she was already gone. We knew CPR and electrical paddles would only put her little body through more trauma, and in the end, nothing was going to save her. It's crazy that we so easily made such a horrible decision. It's crazy that we even in the position to make such a decision.

It's ridiculous that as a 27 year old, I planned a funeral for my 9 month old and that my husband and I have toured most of the nearby cememtaries. It's unbelieveble that we have written an obiturary for our BABY. 

Sometimes I pause, look around our house and wonder what the hell happened to our life. Instead of spending my days running to Target, the co-op, and frantically trying to get chores done between feedings and naps, I try to track down an autopsy report for Ellie, schedule Max's autism therapies, and research how to start a charity in Ellie's name. I feel like my life has turned into a Lifetime movie.

The other day, the Minnesota Department of Health called. All deaths caused by an infection are reported to the state. The lady needed to ask me some questions regarding Ellie's death and then asked if I would be willing to answer some questions for a current study they were conducting on the new pneumococcal vaccine. I, of course, was more than willing- who wouldn't want to help someone else from being in our shoes. I answered all of her questions and at the end she said, "Thank you for your time Mrs. DeRoma. As a token of our gratitude we will be spending you a $20 gift card to Target. Thank you and have a great day." Seriously?! How weird is that? As compensation for answering questions about my dead daughter, they are going to send me a gift card to Target?! "uhhhh.... ok....." was all I could say to her. That has to be the most bizarre conversation I have ever had in my life.

I'm sure it's all going to start feeling more real soon, but now, it just seems like this strange, bizarre, never ending dream. Who starts out a weekend at the Children's Museum with their kids and ends their weekend by giving a doctor permission to turn off life support on one of those same kids?! Who has to bury their perfect nine-month old?! Like I said, there just aren't words for this. Absurd, bizarre, ludicrous, ridiculous, strange, surreal... none of them are good enough... messed up... screwed up... effed up... those seem to fit a little better...

Elle at swim lessons on October 18th. I had no idea how different our life would be just one week later...

October 29th.

Like I said... effed up...

Just Because...



Just because I smile, doesn't mean I don't miss you.
Just because I laugh, doesn't mean it's not killing me.
Just because I shower and put on something besides pajamas, doesn't mean I wouldn't give anything to hold you.
Just because I get out of bed in the morning, doesn't mean I can bear another day without you here.
Just because I chase Max through the tunnels and down the slides at the indoor park, doesn't mean I'm not thinking about you the entire time. It doesn't mean that I don't remember you were with us last time, the night before Max's birthday- less than two months ago. It doesn't mean I don't remember you sat in the stroller, ate pears, and smiled and laughed at me when I was shouting at you from the top level.
Just because I do a couple loads of laundry, doesn't mean I'm not replaying those last horrible hours we had with you.
Just because I'm not crying, doesn't mean I'm not biting my lip to hold the tears in.
Just because I open the curtains to let the light in, doesn't mean I don't despise it for shining.
Just because I say I'm ok, doesn't mean I am.
Just because the world keeps going on around us, doesn't mean we want it to.
Just because we had to let you go, doesn't mean we wanted to.

I'll like you forever.

I'll love you for always.

As long as I'm living

my baby you'll be.

This place

People keep saying I can't imagine what you are going through. They're right. Unless you've been to this horrible place, you don't know. Its like a roller coaster you can't get off of- up and down and around, over and over again. It's like we woke up one day and were living someone else's life in a place faraway from home.

It's sad here. Sometimes the sadness is raw like a skinned knee. Sometimes it seems like the sadness and hurt is starting to settle in. I think I can actually feel the pain starting to sink into my bones, it's making itself at home.

It's angry and rageful here. The anger is like waves, sometimes they aren't so big but other times they beat against the shore with the force of a hurricane. The only difference is here, you don't know the storm is coming, it just shows up without warning.

It's exhausting here too. All the sadness, the anger, they take up a lot of energy. My mind is tired from trying to figure out where how we got here. Since you aren't ever hungry here and your thoughts are so loud they keep you from sleeping, your body is tired too. The aches, headaches, upset stomach, shaky hands and blurry eyes make normal tasks that much harder to do. I feel like I am always making through sand with concrete boots on.

Sometimes its happy here. Something will distract us for a moment and we might laugh or smile. But usually guilt shows up then. How could we possibly be happy or smiling without her? How could we enjoy anything when she is not here to enjoy it with us? Thankfully, Max is here. Max makes us happy.

Sometimes its peaceful here too. I know my girl is safe and happy where she is. I know nothing bad can ever happen to her again. I know she will be waiting for us when we finally get to be with her again. Generally, I feel like we gave her everything we could- I don't feel like we have ever taken our kids forgranted. I have always known that anything can happen at anytime, you need to make the most out of every day you have with your babies.

But sometimes regret shows up here. I should have taken more pictures and videos. I should have just put her in bed with us those nights I wanted to sleep next to her. I should have kept nursing her longer, maybe she wouldn't have gotten so sick. I should have known how sick she was earlier and done something about it. I should have let them turn off the ECMO earlier and save her small body from further damage.

I'm still not quiet sure how we got here. I don't like it here. We want our old lives back. This place isn't good. I don't like going to bed at night because I don't like waking up here in the morning. I want to wake up tomorrow in our old life. Our perfect life. Somehow we got a one-way ticket to the place where no one wants to go.

Father's Day 2010

Too easy

A diaper bag with two different sized diapers, wipes, changing mats, extra change of clothes for Mr & Miss Puke & Poop, extra burp rags, epi pen & Benadryl, toys, hand sanitizer, bottle, formula, water, sippy cup with water, Cheerios, puffs... two blankies, one Georgie, one Canon, two nuks. Once I had everything gathered then it was time to begin the dressing process. Two coats, two pairs of shoes and two hats. Plus one nuk hook.
Usually by then at least one child was crying. I'd take the diaper bag and stuffed animals out to the car. Get Max out the door and scoop up Elle. While making sure Max didn't wander off, I would wrestle Ellie into her car seat. After she was situated with her blankie, nuk and toy, it was Maxer's turn. He, of course, had to assist in the buckling process. Once his nuk, Georgie, Canon & blankie were in place, I climbed into the front seat. Then I got out of the car and ran into the house to get the car keys- I always forget the car keys- and whatever else might be necessary that particular day- Tylenol, teether, Mylicon... Back into the front seat, turn around and practically climb into the back seat to get Max's animal off the floor and Ellie's nuk back in her mouth. As I turned around I realized I had the single stroller in the car and needed the double stroller. So out of the car one more time to take the one-seater out of the back and throw the four-hundred pound two-seater in... Finally, after one more animal retrieval and nuk finding mission we were on our way... to the co-op. That's it. Not some big four week excursion. Just going to pick up some rice milk, mish mash and soy cheese.
Taking an autistic toddler and nine-month old out for even a quick errand by yourself is no small feat. You have to be prepared for every possible diaper, puke or hunger disaster. Max needs things to go pretty much the same way every time we run an errand or there will be screaming. Don't even get me started on loading the kids into the strollers, the actual shopping and checking out at the cash register....By the time we got back from one short trip to the health food store I was exhausted. 

Today the pharmacy started in with the harassing "come pick up your meds" calls. So I threw Max's shoes and coat on, and grabbed my wallet and his animals/ "friends." His diaper bag pretty much stays in the car because we don't go anywhere now. I put him into his seat and handed over his friends. I did come back in to get the car keys and then we were off. We got to CVS, parked, I took Max out of the car, we walked in, got our meds and left. That's it.

I miss everything about her. EVERYTHING. I even miss the extra work that it took to run a simple errand by myself. I love the craziness of being a mom. Some people might take pride in making a big sale, performing a surgery, whatever- I liked the sense of accomplishment I felt after taking two kids under two to run errands by myself. Its a lot of work. I miss that. I miss the chaos and noise. I miss the extra work of our baby. Its too quiet and simple now.

Elle Belle~ I miss you puking on my shirt two seconds after I get out of the shower, I miss changing your disgusting overflowing diapers. I miss your snot nose and the drool marks you left on my shoulders. I miss trying to cram your stuff into the diaper bag with Max's. I miss your dirty laundry and stinky pudgy toes. I miss your sticky half eaten puffs and grubby mashed banana covered hands. Mama misses you Peanut!



State Fair= two single strollers





Double Stroller= small bus



Hmmm



K. Holly Photography


This picture, taken about a month before Ellie died, seems to be eerily indicative of what was to come. And it wasn't the only thing.
A week and a half before Ellie died, we were told that Max likely had autism. Max was having a particularly bad day with a lot of tantrums and I needed a break. I asked my mom to come stay with the kids so Dave and I could just go have dinner. Last minute, I decided to being Elle with us. I'm not sure why I wanted her to come but I just wanted her with me. She loved having the complete attention of both Mama and Dada. All smiles, giggles and making eyes at the waiter. She showed off all her tricks- "Ellie is soooo big" with arms in the air, asking for more, clapping her hands. That was one of the only times it was just the three of us.
The week before Ellie died, she was having a hard time sleeping in her crib. She would wake up crying and just wanted to be held while she slept. Usually I would try to get her back to sleep in her crib so she didn't develop any bad habits and so I could get some chores done. Don't get me wrong, I would love nothing more than to hold my babies every time they sleep, but its not always realistic. But for some reason, that last week, I just held her. I just brought her downstairs and cuddled up with her on the couch until she woke up. Just me and my peanut all snuggled up together...

January 15, 2010



Feb 15, 2010



Where is my ten month picture? Today I should have had to wrestle Ellie to sit still and not eat the piece of paper while I took her ten month picture. It shouldn't be like this. It shouldn't just stop at the nine month picture. I can't believe she been gone for only three weeks. It feels like an eternity. I never even spent a night away from her. I used to start missing her before she woke up from her nap. I can't believe we have to live the rest of our lives without her. A mother should never have to be without her baby. This isn't right. None of this is right. What happened to our perfect lives? Where did my perfect girl go? Where is my ten month picture?

Just us

They were moving all around us. There were at least seven of them. Each so concentrated on their task, they barely noticed I was there. They just climbed over me so they could get done what they needed to. One kept adjusting the settings on her ventilator. One was frantically trying to get in as many medications as possible, on whatever line was available. Two were checking yet another bag of blood products. One was on the computer, trying to keep track of everything being done and put into her. Another stood on her left side with a large needle trying, unsuccessfully, to get yet another line placed into her groin. One stood next to me, moving the pulse oximeter probe from extremity to extremity, trying to get it to work on her cold grey fingers.

I knew they were there. But I felt like it was just us. I sat up by her head on her right side, laid my head down next to hers, held her cold hand, tucked her blankie up next to her face, closed my eyes and sang her "Baby Beluga" over and over again. It was all I could do for her. So thats what I did. While the craziness swirled around us, I did my best to make sure my baby girl knew I was there. I hope she knew I was there, because thats all I could do for her.

Today we went to the cemetery and made Ellie her first snowman. Because that's all we can do for her.



It even has a goofy smile like our peanut





Ellie's snowman next to her grave. We hung bells and some other things in the tree for her.

 

My Little White Whale

Elle Belle,
We got our first big snow fall today. Several times today I imagined you sitting in front of the sliding glass door staring at the sudden change in scenery. You would have been so curious. I can just see you sitting there, pounding on the glass with that inquistive look on your face. You would have looked back at me to make sure that I was seeing the same thing you were. I would have taken you outside in your heavy coat and striped stocking cap so you could feel the snowflakes falling on your face. The fresh blanket of snow is beautiful, like you. Normally, I would be so excited about the first big snow. But today it feels like its suffocating me.
Tonight I just want to be able to go upstairs, take you out of your crib and cuddle with you in the rocking chair. You'd snuggle right in. I'd rub my face on the top of your fuzzy little head. I want to breathe in your sweet baby smell. I want to look down at you and smile at how cute you are in your warm snuggly footies with your blankie tucked up by your face. I want to feel your weight in your arms and sing you your little lullaby. Its not fair that I can't do that. I wish you were here sweet girl. We miss you soooo much...

"Baby beluga in the deep blue sea,
Swim so wild and you swim so free.
Heaven above and the sea below,
And a little white whale on the go.

Baby beluga, baby beluga,
Is the water warm? Is your mama home,
With you so happy?

Way down yonder where the dolphins play,
Where you dive and splash all day,
Waves roll in and the waves roll out.
See the water squirting out of your spout.

Baby beluga, oh, baby beluga,
Sing your little song, sing for all your friends.
We like to hear you.

When it's dark, you're home and fed.
Curled up snug in your waterbed.
Moon is shining and the stars are out.
Good night, little whale, good night.

Baby beluga, oh, baby beluga,
With tomorrow's sun, another day's begun.
You'll soon be waking.

Baby beluga in the deep blue sea,
Swim so wild and you swim so free.
Heaven above and the sea below,
And a little white whale on the go.
You're just a little white whale on the go"

I love you baby girl!



Cuddling with Dada before bed. Six days old.



She's Everywhere

Target. I know many people share the same love of Target as I do. As a mother of two, I used to be at Target at least once a week, if not more. In the last three weeks I have been at Target three times. Three times ago, was about three weeks ago. We loaded the kids up in the car and made a "quick trip" to Target. We all know Target is never a quick trip. You can guarantee that at least one thing you didn't plan on buying will end up in your cart... After stocking up on wipes, diapers- sizes 4 and 5, formula and baby oatmeal, we headed over to the grocery section. Max was started to get a little orneryy so Dave and I decided it was time to divide and conquer. Dave and Max went in search of Clorox wipes, while Ellie and I hunted for animal crackers. I can vividly remember our smiley girl sitting in the cart. Max could be heard laughing from a couple aisles away and I leaned in close to Elle and said, "Your brother is silly!" She gave a little squeal, bounced up and down and returned to pounding on the animal crackers. Out of the corner of my eye, I spied a box of Milano cookies. Mmmm, I thought, I think I need these...


The second to last time I went to Target was 17 days ago. Dave, Max and I went to make the hardest purchases of our lives. We bought one stuffed Curious George, a stuffed horse that played a lullaby, two books, a birthday card and a pair of fuzzy pink footy pjs. All things we needed to bury our baby girl. The pink pjs were next to tiny Santa dresses. Before Ellie was even born, I wanted to dress her in a little Santa dress, tights and a Santa hat on her first Christmas Eve. I lost it. Instead of buying that cute little Santa dress, we had to buy warm fuzzy jammies to bury Ellie in.
The stuffed horse was the one and only present from Max to Ellie. We asked the funeral director to pull the cord and start the lullaby before closing the casket lid. The stuffed Curious George was actually a replacement for Max's. We put Max's Georgie in the casket with Ellie, she always had this strange obsession with it... Don't tell Max... he never noticed the difference.
"We Love You Through and Through" and "God Gave Us You" were the two books I picked out. I wrote a message in each one and read them to her before we placed them in her casket. "God Gave Us You" is about a mama bear telling her cub the story of his birth. At the end, the cub asks his mama if she ever wished that she'd had Samuel the Seal or so and so. The mama reassures her cub and says, "no, we wanted you. because God gave us you." I felt like that book was the perfect "last story" for Ellie. Obviously her death and this pain is the worst thing anyone could ever experience. But I wouldn't trade those nine months with her for anything, even if it meant we wouldn't have to hurt like this. God gave her to us for a reason, we wouldn't have wanted it any other way.
The last thing I bought was a birthday card. A one year birthday card for our little girl. I wrote a birthday message to our beautiful Ellie and we put it the casket with the rest of things.

The last time I went to Target was tonight. We put Max into the car next to Ellie's empty car seat and headed out. After Max was settled into the cart, we made our way back to baby section to get diapers, only the size 5's this time. I couldn't even look at the baby clothes section- it was used to be the best part of my beloved Target. My chest was tight the entire time but I was ok until we went down the cookie aisle. That's where I saw them, the Milano cookies. It all came back in an instant... my sweet peanut smiling at me while she bounced up and down. Sometimes it just floods back in an instant, its like getting hit by a train.
As we were checking out, I spotted a woman I used to work with in high school. She was always the nicest, kindest lady. I used to babysit for her little girls who are now teenagers. We stood there catching up and that's when it happened. I've been dreading it. She looked at me and said, "so do you have any other kids besides Max?" "We used to have a 9 month old daughter," I said. "She died about three weeks ago." The words came out of my mouth so easily, it made me want to throw up.

Our girl is everywhere. Even Target is brimming with memories of her.

Our bright light

As Max ran down the hall towards Dave in the bathroom tonight to brush his teeth, it was glaringly obvious that she was missing. We always got the kids ready for bed at the same time. Ellie should have been there tonight. Usually she was crabby at this time of night, but as soon as we went upstairs to get ready for bed, she was usually pretty happy until she decided she wanted her bottle. She liked our little routine.
I know she would have been crawling by now. She was so close. She'd push herself way up on her hands and occasionally, accidently, get up on her knees. She'd pivot this way and that way on her tummy. Ellie was so anxious to get into whatever was going on, that I know she would have gotten sick of rolling everywhere by now and started crawling.
I just know that she would be chasing Max down the hallway. Dave said she'd probably stop half way down the hallway and give us a goofy smile. She would be so proud of herself and she would want to make sure that we noticed how cute she was. And of course, we would.
Today was the first morning that I had to get Max up by myself and be here alone for breakfast time. Max is always crabby in the morning and a lot of times breakfast is a huge disaster- his hunger is always known! Ellie would sit in front of the fridge and happily play with her farm magnets until I put her in the high chair where she would demand "mo-mo" (more) puffs. Today, after a small fit, Max ate his breakfast quietly. The silence was deafening. Dave at work, Max in his own world to my right and Elle's empty highchair to my left... I have never felt so lonely in my entire life. Ellie has left this incredible hole in our lives.

A friend mentioned to me what an effect Ellie's life and death has had on so many people. I guess I can't say I'm surprised. We have always known how amazing she was and I knew that her life was going to be different than the rest of us. Everyday I wonder why. Why did this happen to her? Why did this happen to us? I'm not sure there is an answer to this question. But I do know that we are going to make sure that people never forget our beautiful baby girl. Ellie was so happy, so full of joy. She liked to make people smile. She knew she made people happy and she liked to do it. I feel like its our job to keep spreading joy and happiness in her memory.
Dave and I are so grateful for all the support we have received from people. Our friends and family have been amazing. People we haven't talked to or seen in years have sent cards and offered many kind words of support. Almost complete strangers have provided us with support. We wouldn't be able to keep going without everyone. Even the simple "just checking in" note reminds us there are people out there that care. Its sad to think that it took Ellie's death to cause such an outpouring of support. But I think in some way, all the love and kindness we are experiencing, is Ellie's doing. I think its her little way of taking care of us right now.

Ellie's absence is paralyzing. She was such a bright light in our lives. But even though its not the same light, I can still see it shining.



Right after the first time she rolled over. I miss that sweet face soooo much!



It doesn't matter

Maxer,
Little man. Do you know how much we love you? You are so cute. Your big blue eyes, your one dimple and wild and crazy hair. Long legs and cute little butt. You crack us up- you always have. Daddy and I worked so hard to get you and you have defintely kept us on our toes. Its funny but I can hardly remember our lives before you. You are my first baby. You taught me so many things about being a mom, being selfless and you taught me how to look at the world differently. I'm pretty sure most moms say the same things about their first baby. Becoming a parent is the most incredible thing you can experience- its indescribable. But you taught me to see the world differently because you see the world differently than most people.
The day Ellie died we watched a lot of home videos. Afterwards, Daddy and I were talking in the kitchen and we both noticed how much you changed in the last nine months. Of course you got bigger and more handsome (or sand-some, as you say...), but we saw you retreating into your own little world. When we brought Ellie home from the hospital you were really starting to talk and you would play with us. Now, you talk but not like you did then. And you don't really play with us anymore. Its like Mommy and Daddy were watching you slip away from us. It scares me to think that you could keep shrinking away from us. We still get lots of hugs and cuddles ("cu-cus") from you but you don't hardly let us read you stories anymore.
In the next couple days, some ladies from the school district will send us some paperwork.
That paperwork is going to say you have autism. Its going to say that you have trouble leaving your world and coming into ours. Its going to say that you will have to work harder than most kids to make friends and have fun playing games. Its going to say we will have to work really hard if we want you to keep up with kids your age. Its going to say that some of the things we love most about you- your quirky routines, the way you climb into small tubs & drawers, and your incredible memory, are actually signs that something is wrong.
But what its not going to say is how much Mommy and Daddy love you. We don't like that some things are going to be harder for you. We hate it. I hate to think that you would ever be without friends- you are an amazing little guy, who wouldn't want to be your friend? It scares me to think that you might not be interested in making friends. I fear that you are lonely trapped in your little world. You seem happy- I don't think you are lonely. But the thought that you wouldn't even be able to tell me you are lonely, breaks my heart. Because even if you stay trapped in your world of patterns and routine forever, you won't ever be by yourself. We will always be here. And we love you no matter what.
I also want you to know that we loved Ellie so much. I know you don't understand what has been happening around here the last couple weeks. But I have this huge fear that somewhere in the back of your mind, you think we just got rid of Ellie. Because I left the house with her and when we came back she wasn't with us. Part of me is glad you are so young and oblivious to the world around you because I don't think you miss Ellie. I think you know she's not here and thats it. But I am sad you missed out on a relationship with her when she was here. I am sad you never got to say goodbye. I am sorry that you don't understand why Mommy is so sad. But I need you to know that we wanted, more than anything, to bring Ellie home with us that night. Mommy and Daddy didn't pick this for Ellie.
Max, right now- you are our reason. I get out of bed for you. No matter what that paperwork says, you are our boy and we love you. Just like its doesn't matter where Ellie is, she is our girl and we love her.
I love you Max.
Mama

The Park

Twenty one days ago. These pictures are only twenty one days old. I was pushing both kids in the swing at the same time when I took this picture. I remember thinking, life doesn't get any better than this. This is what I always wanted. It was a nice day, the kids and I had been out running errands and stopped to play at the park. When we were going through fertility treatments, I would look at moms with their babies at the park in the middle of the day, so happy, and I hated them. I wanted so badly to be them.

Twenty one days ago, I looked around at those moms and thought for the first time- I was one of them. I was a mom that was lucky enough to be at the park with her babies in the middle of day during the work week. There couldn't be anything better.

Today, the weather was unbelievable- thanks Elle. But I knew it meant I had to go back. Max deserved it- he's been through a lot the last couple weeks, was stir crazy and it wasn't fair to him to stay at home. By the time we were pulling out of the driveway, my chest was tight. By the time we got to the first big intersection, I thought my lungs were shrinking. Half way there, I thought my throat was starting to close. All the noises around me started to seem faraway. My hands shook when I unhooked Max from the car seat. 

I knew it was there. The slide that she liked me to slide her down and then let her sit and play at the bottom. The swing where she sat next to Max. And I looked at those things. But I don't think I saw them. 

My friend asked me today how I am getting up each day- like how I literally sit up and put my feet on the floor and propel myself down the stairs...

I don't know...

The human body is an incredible thing. The nurse in me, says this is shock. My body has taken over. My mind, my heart, have no say right now. I can get up, take Max to the park, plant tulips at the cemetery so they will bloom for Ellie in the spring, go to lunch and hang out with my family. I can have conversations and get Max into pjs. But I feel like I have no control over it. Max needs some sort of mother...

My mind- I'm not really sure where it went. I have no attention span and poor short term memory. My heart- I don't know where that went either. The last few days I feel like I have a hard time thinking about Ellie. I am having a hard time picturing her face, her hands, her feet and goofy smile. All I get is flashes. Flashes of her- that is all I have right now. When I look at pictures or videos of her, I have a hard time concentrating on them. Its like my mind doesn't want to think about her. Its avoiding her. My heart though, it wants her back. Anything, any part of her.

My chest feels tight all the time. Its always hard to breathe. If I didn't know better, I'd think I was drowning. Its strange how heavy and weighed down you can feel, yet so empty.

Empty. Empty highchair, empty car seat, empty crib, empty bouncy seat, empty clothes hamper, empty arms. Empty.

Mercifully, there were no babies at the park today. A pregnant mom stood next to me while our boys ran across the bridge and made small talk. She rubbed her belly and mentioned that it was going to her third baby. I thought- I used to have a baby- twenty one days ago, I had a baby too. She was beautiful and if she was here, like she was twenty one days ago, you would smile at her and mention how cute she was... Pretty soon her son ran off and that mom moved to the other side of the park with the rest of them. I found myself staring at them and once again, hating them. Those happy moms that take their happy, healthy, alive babies to the park in the middle of the day.

Ellie~ I just want you back peanut. Mama just wants you back.