Friday, December 31, 2010

Time marches on

It's December 31, 2010. New Years Eve Day. The last day of 2010. Tomorrow will be 2011. A new year.

This time last year, we were anxiously awaiting the arrival of our baby girl. I was begging my doctor to have mercy and induce me early. Ellie was pressed against a bundle of nerves causing my legs to alternate from numbness and tingling to extreme pain. But, I was so excited to meet our my daughter. I knew she would be perfect and beautiful.

2010 was to be an amazing year. And until October, it was. Max was turning into a hilarious, smart little boy. On January 15, Ellie arrived and was the dream baby. She was so easy going and happy. We couldn't ask for anything more. It was definitely stressful having two kids under two, but I wouldn't have had it any other way.
When October hit, everything fell apart. We learned Max would need special education classes and our hearts broke when our perfect little peanut was ripped from our lives. It was so unexpected, so sudden, so horrific- we never saw it coming. There is nothing that could ever prepare you for such a tragic thing and as far as I can tell, nothing that can make it better.

Everyday, I still can't believe she is gone. We have been trudging through this "life" without her for over two months now. There is a part of me that hates the sun for continuing to rise every morning. I hate that people keep going about their business, like nothing ever happened. I hate myself for doing this too. There is laundry to be done, errands to be run and a toddler to feed, wash and entertain. I may not like it or want it, but time marches on. Even without her.
To me, tomorrow represents that no matter how I feel or hurt, life is going to keep going on without our blue eyed, chunky thighed, silly, goofy girl. 2010 was the only year that Ellie ever saw. 2010 was the Year of Ellie. As painful as 2010 has been the last couple months, I don't want to leave it behind. I don't want to leave my girl behind.

Wednesday, December 29, 2010

Just Breathe


"Did I say that I need you?
Oh, Did I say that I want you?
Oh, if I didn’t now I’m a fool you see,..
No one know this more than me.
As I come clean.

Nothing you would take,..
everything you gave.
Hold me till I die,..
Meet you on the other side..."
- Just Breathe, Pearl Jam

Tuesday, December 28, 2010

I survived


Christmas Eve Morning
 I can honestly say that the best part of Christmas this year, is that it's over. I survived. We knew we didn't want to be home for Christmas this year so we planned a trip to Duluth. Thankfully our families agreed to forgo the usual Christmas activities and travel to Duluth with us. Besides opening some presents, some Christmas lights, stockings and Ellie's little purple Christmas tree, there wasn't much "Christmas." It is hard enough to get through every day, but to add in all the traditional Christmas stuff, just seemed too overwhelming. And really, this year, I didn't even miss it. Without Ellie, nothing will ever be the same, so why keep doing everything else the same?

A couple people mentioned that going to Duluth for Christmas would be a nice escape from all the stress we've experienced lately. Ha! Yes, going to Duluth was an excellent distraction. I think it made Christmas as bearable as it could be. There were different things to look at, to do and to occupy our minds. We had our families around continuously for support. But the two things that are causing me the most pain, won't ever go away. They are two things you don't get to escape from. Autism and the death of a child.
Max's mind doesn't work like most other people's. He has no interest in opening presents and the mere suggestion of it seems to stress him out. He won't even sit on the floor next to us while we open presents. Even if he did desire to open them, he wouldn't know what to do once he had them in front of him. He doesn't understand how to play with most toys and wants nothing to do with anything new, this includes new toys, places and people. Fortunately he did really well being in a new environment. But it took a lot of work to make sure things went smoothly. Certain foods, toys and activities all have to be readily available to Max to ensure happiness. I am constantly assessing Max's mood and looking for anything that could be a trigger to a meltdown. Thought must go into everything. Relaxing is a relative term. Autism doesn't take a break just because it's a holiday or because you go out of town. In many respects, it's more obvious, more work and more stress. It's situation like this that make Max's differences very obvious. And it makes me very sad.
The pain we feel from losing Ellie is always with us. It doesn't matter where we go, what we do or who we are with. It is always there. Being in Duluth, made me think of all the things we would never get to do with her. We will never take her on a trip and show her all the amazing beautiful things out there in the world. Duluth is the place where Dave and I went to college and met. It's hard to be up there and know we won't ever bring her up there and show her where we met, which dorms used to be ours or take her to eat at Pizza Luce where Dave used to work.
Even though Duluth is full of amazing, happy memories, they don't distract from missing her. I see here everywhere I go. We stayed at a condo right on the lake. The weather was incredible, especially for Duluth, and the lake was so calm the first two days. We watched the sun rise the last morning we were there. It was pink and simply beautiful. As I watched the sun climb through the clouds, I couldn't help thinking it was Ellie. It's hard to explain but it's moments like that when Ellie seems so close yet so far away. I know Ellie will always be with us. But when you can't see your baby, touch them, smell them or hear them, they feel so far away.
So yes, going to Duluth for Christmas was a nice distraction. But certain things just can't be left behind. We will forever carry Max's autism with us. And losing a child is like carting around the biggest, heaviest, bulkiest piece of luggage you can ever imagine. I hate lugging it around. But in some ways, the pain, it makes me feel closer to her.



Saturday, December 25, 2010

All I Want For Christmas

IS YOU

There are no words. No early morning Christmas pictures. No piles of presents. No "excited dance." No dolls or cute new dresses. No Christmas morning snuggles. No Christmas Day dress.

It's been exactly two months since the worse day of my life. I miss her so much. I feel so cheated. We didn't even get one Christmas with our baby girl. Ellie would have LOVED all of the Christmas excitement. Instead of watching our beautiful, perfect baby girl tear into presents, all I have is her two blankies and a framed picture.

I couldn't care less that it's Christmas. It doesn't even matter...


Merry Christmas Little Peanut! I love you and wish, more than anything, that you were here with us.


I miss you Silly Little Peanut!


Friday, December 24, 2010

"merry" christmas

My beautiful baby girl,

Tonight is Christmas Eve. It would have been your first. Instead, it's our first, without you. This was one of the days I'd been dreaming about all year. You and Maxer would have been the perfect ages for Christmas presents, forced pictures with Santa, cookies, stockings... I can picture you in your Santa dress, white ruffle butt tights, little shoes, red hair bow. I just know you would have loved every second of our typical Christmas Eve celebration. You would have torn into your presents without hesitation and had a mouthful of wrapping paper most of the night. We would have seen your "excited dance" throughout the night as we moved from dinner, to presents, to Christmas pjs. You were so perceptive and would have sensed the excitement in the air.
Nothing was typical about tonight. In fact, we did presents last night. For that I am thankful. I couldn't imagine trying to fake it tonight. Max has no interest in Christmas. He isn't anywhere near understanding the Santa concept, won't watch Christmas movies, won't let us read Christmas stories and wants nothing to do with unwrapping presents. If Max had interest, we would have faked it. But without you, Peanut, I just don't care. I just want to survive. Christmas Eve used to be my favorite night of the year. Now it will never be the same again. From now on, there will always be someone missing.
I would give anything to have you here with us. Tucked safely in bed, all snuggled up on your side with blankie and giraffe, dressed in Christmas footies.
Exactly two months ago, we were standing at your bedside praying for a miracle. For whatever reason, we didn't get it. I can't believe it's been two months. It seems like forever since you've been gone. It seems like forever since I've held you close and smelled your sweet baby smell.
Exactly a year ago, you were tucked safely inside my tummy. I remember coming home, putting Max in bed and talking with Daddy before we went to bed. We were so excited for what next Christmas would bring. I remember not sleeping very well that night, we were getting so big and you kept kicking me all night. I remember thinking I couldn't much bigger, and neither could you- the "Inn was full." I never thought, for even a second, that we would be where we are today- so vacant. I suppose most people would say heaven is the best place to celebrate Christmas. But "most people" don't matter. I'm your Mommy, I want you here, with me. With us.
Maybe tonight I will put another cookie on Santa's plate and maybe tomorrow I will get my Christmas wish and wake up from this nightmare.
I love you Ellie!
Mama



Milk & Cookies for Santa, Carrots for Reindeer.
A lit purple candle for Ellie.
Thank you so much Kaelin, Brett and Kerri!



Ellie's spot. Her Christmas with the stuff for Santa & candle. Hopefully her Christmas lights are shining bright.


Tuesday, December 21, 2010

Fear

I've always been a scaredy cat. Scared of every noise, the dark. I have always been convinced that someone would break into the house or that if someone was late it surely meant they were laying somewhere in the ditch, dead. Yes Dad, I blame you and your crime lab job. Also, listening to the police scanner at bed time doesn't really help either :) I was always sure something bad was going to happen.

Max was born with very severe reflux. He had a couple incidents within the first few days of his life where he turned blue, the special care nurses were called to see him at birth. Very scary. He had several of these episodes during the first three months. I was super protective of him, only left him with certain people and didn't even like other people feeding him. He has always seemed like he needed to be watched over a little more closely.
Ellie, on the other hand, seem perfect from the get-go. Some seemingly run of the mill childhood illness but she always seemed a little more "hardy" than Max. Maybe it's the whole first vs. second child thing... But I was oh-so wrong. Ellie was the one that needed extra protection. I was much more easy going about letting other hold her, feed her, etc. Max has his issues, but Ellie's took her life. And I didn't even know it was coming.

What happened to Ellie is every parent's worse fear. To have to bury your baby is unspeakable. Before Ellie died, I of course got nervous every time they started to get sick. Being an oncology nurse, every time I saw a bruise I thought "its leukemia." The worry was there but I knew (or thought I knew) that I was just being paranoid. When Ellie's was in the ER that day she got little pinpoint bruises all over her body- a common sign of leukemia. I remember feeling stupid as I asked the doctor if she could have cancer. He shook his head and said, "I don't think that is what we are working with here..." Even then, I thought, that stuff doesn't really happen to people I know. Something that bad won't actually happen to my child.

Well, it does. It did. Bad things happen for no rhyme or reason. We will never know why Ellie's spleen died, causing her to be so susceptible to infection. We were told it's the "shittiest kind of bad luck."

Now, my fear is almost overwhelming. Max has a milk allergy but hasn't had an issue since we diagnosed him. On Friday, he broke out into hives from something he'd never had a problem with. My heart pounded the whole time. I got out his epi-pen. In my mind I was seeing the ambulance coming, the paramedics run in and take another child from me. Before, his hives would have worried me but I would have given him Benadryl and watched him.
Last night, Max wouldn't sleep. He's been coughing for two weeks and his reflux is flaring up. He was laying in bed with us and I just kept tearing up. Max's sippy cup was sitting on the nightstand right next to Ellie's. Fifty-seven days before I had been laying in bed with Elle, snuggled up almost the same exact way. My mind just kept saying, "we can't go through this again. we can't lose another one." I asked Dave, "what if there is something wrong with him?" Dave said, "there isn't." That's what he said Ellie's last night. And there was.
I called Max's awesome pediatrician and he thinks Max has a sinus infection. But we did get Max scheduled for an abdominal ultrasound and lab draws. What happened to Ellie was a fluke- or so they think. But just because they don't have a reason this happened, doesn't mean there isn't one. I need the piece of mind to know Max is ok. Well ok for now.
I am now painfully aware that anything can happen at anytime. No one is safe. You have to take advantage of every second with the people you love because you never know when they could be taken away from you.

Sunday, December 19, 2010

Tug of War

Tug of war. That's what it was like. That's what it was like when Ellie was in the hospital and it's what it was like on friday. Two seperate "teams" pulling in different directions. 

On friday, my mom and friend Jodi went with me down to the hospital to meet with Ellie's doctors. My anxiety started to go up as soon as we neared the parking ramp. It's a new parking ramp since I worked there, so the only time I was in there was when we walked our parents to their car a few hours before Ellie died. Dave and I went out to get a sweatshirt and I took a picture of Ellie out of my wallet so the nurses and doctors would know how pretty she was. I remembered crying at seeing her diaper bag, seeing her empty bottles and diapers, all normal baby things- baby things that Ellie had no need for at that time.
I felt ok until the doctor brought in his laptop and opened up the powerpoint presentation- the first slide said, "DEATH REVIEW: ELLIE." I couldn't stop looking at it- there it was, literally in black and white. We met with her infectious disease doctor, Dr Pozos, who saw her at St. Paul and intensive care doctor, Dr. Kurachek. Dr. Kurachek did not take care of Ellie but did her case review. He interviewed over 20 people involved in Ellie's care, including ambulance personnel, nurses, resp. therapists. He used that information during a case review with ICU staff and during an ECMO case review. Both doctors were so kind, caring and compassionate.
During the review, the doctors talked to me like a nurse. They presented a lot of information in a time-line which was very helpful to me. My memories from that day and night are fleeting, blurry and very confusing, to have the day broke down in that fashion helped me better understand how things played out. They told me what blood products she received, and what antibiotics she was on. I never doubted that everyone did everything they possibly could to save Elle, but it was good to see it written out. However, it was nauseating to see how bad her labs were and to see written down what meds she was on.

Here's the overview: At some point in Ellie's life (most likely in-utero) the blood supply to her spleen was cut off. This caused her spleen to die and be non-functional. There was never any indication that Ellie did not have spleen function. Without spleen function you are very susceptible to certain infections, especially as an infant. Ellie contracted a very common bacteria that her body was not able to fight. It was a pneumococcal infection, which causes ear infections, sinus infections, etc., it is an illness you are vaccinated against; however, the strain that infected Ellie is not included in the newest PCV13 vaccine. Either way, without a spleen, Ellie would not have likely developed antibodies against the strain, even if she had been vaccinated.
Once the infection had taken hold of Ellie's body, it was too late for us to do anything. Her immune system went into overdrive trying to fight the bacteria. It's like when you get a cut on your finger and the area around it gets a little oozy, red and swollen. That's what happened to Ellie on a full-body scale. Her vessels started to leak fluid into the tissue, which caused blood flow to her organs to be compromised. Her body depleted itself of it's clotting factors, which is referred to as DIC. It is a very hard condition to combat. Once Ellie's body got so far down this road, there was just no way back.
We discussed why ECMO didn't work for her. ECMO is a heart-lung bypass machine- basically a pump. ECMO works well if you have a problem with your heart. But if you are a patient like Ellie, and your vessels are leaking, it isn't going to work. The team kept pumping fluid & blood products into Ellie's body but since it was all leaking into the tissue, they weren't able to remove it and put oxygen back into the blood. The cycle couldn't be completed.
The doctor mentioned that one thing that came out of Ellie's case review was if there should be criteria established for not offering ECMO to a patient. When the doctors explained the chances of survival for Ellie on ECMO we were told that without it, her chance of survival was zero. With ECMO, it was still very low- around 1%. As her parents, we had no choice- we had to take that one percent. She was just nine months old, had never been sick before. We would have never forgiven ourselves if we didn't take that chance. The doctors knew all along how sick she was, they knew she had little to no chance of surviving- even if she did, there would have been significant brain, kidney, etc. damage. But as Dr. Pozos said, "the hardest thing for us to do as doctors is take away a parent's hope." By putting Ellie on ECMO, we can say that she literally was given every possible chance. The flip side is, if we hadn't put Ellie on ECMO we would have an more time with her while she was alive. When they were hooking her up to the machines, we couldn't be with her. It was several hours. Who knows how long she would have lasted without ECMO, but we could have had some time before she looked so awful. The doctors said she probably would have looked similar to the way she did at the time of her death even without the ECMO. But even if we had to watch it happen before our eyes, we still would have been holding her. She wouldn't have been alone.

It's like I was two people on friday.
I was Ellie's mom... A mom sitting there listening to doctor's explain, blow-by-blow, how our perfect girl was taken from us. I asked if they thought she was in pain or if I'd nursed her longer, if that would have saved her. I asked if I should have brought her in earlier, maybe that would have saved her. But they don't think she was in pain, extended breastfeeding would not have been enough and there was no way to know how sick she was, therefore, no reason to bring her in earlier.Our meeting did take away a lot of my guilt surrounding those issues. It was something I had to do as her mom, to make sure everything was done for her. And I think it was.
I was a nurse. I saw and understood the severity of Ellie's illness, early on, from a medical standpoint. When Ellie was in the ER and PICU, they told me most of her labs and I understood them. But at the review, it struck me in a different way. To see it written, made them seem even worse. As a nurse, I asked what medications she did or didn't get. As a nurse, I saw that Ellie really never had a chance. I am thankful that I am able to understand what happen to Ellie on a physical level. It allows me to trust that the doctors and nurses made the right decisions.
It was like that when Ellie was in the hospital. Part of my brain knew how sick she was and how unlikely it was to survive an illness of that magnitude. But the other part of my brain (and my whole heart), the Mom half, kept thinking "she'll be fine. this couldn't be happening to my baby."

Generally, I think the meeting was helpful to me. But one thing has stayed at the front of my mind... I know we had to give Ellie that 1% chance of survival that ECMO provided. How could we not? That's the Mom half of me. The nurse half, that half says, I should have seen how sick she was. I should have refused the ECMO and taken what little time I had with her. Hindsight is 20/20. I know this. But still.

It's a constant tug-of war.... Mom vs. Nurse... Could have vs. Couldn't have... Should have vs. Shouldn't have...The what might have been vs. The what is....



Ellie- 24 hours old.

Love.

Thursday, December 16, 2010

Held

"To take a child from her mother while she prays is appalling."

Tomorrow I have a case review with Ellie's infectious disease doctor and the head of the ICU. He will have her autopsy, her medical records and a PowerPoint presentation that he used for her peer case review. I have to go back to the hospital. A place I used to love. But is now the place where the worst thing that has ever happened to me, took place. My memories of the day Ellie died are fleeting, blurry, confusing, terrifying. I barely remember leaving the hospital but I do remember walking out of the door and feeling like all the oxygen had been sucked out of me. I left a part of my heart there that night. We left in the middle of the night, in the darkness of night. Tomorrow I will return in the middle of the day. I am so scared of how it will feel to walk through those doors- my arms just as empty as they were the last time I walked through them.

I'm not sure what I am wanting out of the meeting tomorrow. Part of me feels like it's my job as her mom to look through all of the documents. They are about her. It's hard to think that there is information about Ellie out there that I don't know. It's not going to be easy, to see all those reports with her name on them. I remember the first time we took Max to the emergency room- it was so weird to see his name on the wristband. I noticed Ellie's chart sitting on the desk that night we were there and it made me catch my breath. At only nine months we hadn't really seen her name written that many times and to see it on a chart was like a slap in the face. I'm used to being on the other side of that chart. It's not supposed to be your child's name on the ICU chart. That night the nurses kept giving me that look- I know what that look was because I've given it, I've seen co-workers give it. The "your child isn't going to survive this but I don't want you to know yet" look. I remember telling Dave, "I wish they would quit looking at us like that. I know how sick she is."

I can't believe that the week before Christmas, I am meeting with a doctor to go over Ellie's autopsy. It's sickening.

This song has been a big comfort to me the last couple of days...

Held by Natalie Grant

Two months is too little.
They let him go.
They had no sudden healing.
To think that providence would
Take a child from his mother while she prays
Is appalling.
Who told us we'd be rescued?
What has changed and why should we be saved from nightmares?
We're asking why this happens
To us who have died to live?
It's unfair. 
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we'd be held.
This hand is bitterness.
We want to taste it, let the hatred numb our sorrow.
The wise hand opens slowly to lilies of the valley and tomorrow.


This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we'd be held.

If hope is born of suffering.
If this is only the beginning.
Can we not wait for one hour watching for our Savior?

This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we'd be held.

Wednesday, December 15, 2010

Eleven Months

Elle Belle,
Happy eleven month birthday! I bet you would be into everything by now. All over the place. It would have been nearly impossible to get my 11 month picture of you. I probably would have been able to put that crazy hair in a pony tail by now- right before you died, we were already able to put a little flower barrette in it. I actually found the barrette you had in your hair at the Children's Museum the day before you died, I thought we had lost it. Yesterday at Kohls I opened the storage compartment in the stroller and there it was. A little tiny black and white flower shaped punch in the gut. I tried to remember what you were wearing that last day, and I can't- it's gone. I hate myself for not bringing the camera to the museum with us that day. I usually bring the camera everywhere- I practically stalk you kids, like some wildlife photographer trying to capture some never before seen footage. I would give anything for some pictures of that last day, when we were so unaware of the misery that awaited us the next day. Even if you were sick that day, you didn't show it. I can remember you sitting on the floor, smiling while I waved the pink and blue scarves over your head. Do you remember playing peek-a-boo? You kept giving me that goofy smile.

Tonight Grams, Gramps, Ma, Dada, Max and I took all of the toys to the Toys for Tots warehouse. We stayed to help sort and box toys for awhile. It was nice to do something in honor of you. Maxer even had fun putting toys into the bins. Afterwards I rode with Ma because Dada took Max home to sleep before we were done. So Ma and I stopped at the cemetery to see your lights- Dada said they were on when him and Max drove by. We walked through the knee high snow over to your spot. Remarkably, your wreath, small pink Christmas tree, marker and the light solar panels were not hardly covered with snow. I thought they would be buried under at least a foot of snow, like everything else. Your little spot was perfect.

I hate that you're not here. We should be preparing for your very first Christmas. It shouldn't be like this. I miss you so much little Peanut. Nine months isn't long enough. You would have changed so much in the last month and a half. I bet you would be jabbering like crazy, maybe pulling yourself up to stand. You would be into the Christmas tree every time I turned around and have half the presents already unwrapped. But there would be no way I could be mad at you because you would just look at me, scrunch up your nose, squint your eyes, grab onto your toes and just smile. You were so cute and you knew it, and you knew you could use it against us. I miss that. I miss everything.
It's going be a hard next month. We have to have Christmas without you, enter a new year- one that you never saw, and in exactly one month we will celebrate your birthday. And even though it's going to kill us to be without you on that very important day, I promise we will make you proud. I have been doing lots of planning. But I need you to help us get through this next month. Send us signs, send us strength and love and peace. Send us your light baby girl.

Happy eleven month bday Peanut!
I love you!
Mama


Ellie's gift: The load of toys before we delivered them.


Dada and Max sorting toys

Silly girl


Love you forever and ever. And ever.


Tuesday, December 14, 2010

Cracking

It's only a matter of time. I'm going to crack. There is only so much fake smiling, laughing and living you can do before you start to lose it. It's all getting to be too much. I feel like I'm too young for all this stress- I'm almost 28 but feel like I'm edging on eighty. Lately, it's hard to stop the tears. I can't see a picture of Ellie, something of hers, a commercial with a baby in it, without crying. I miss her so much- that doesn't even touch it. "Miss" isn't strong enough. Every day, every single day since she died, it hits several times a day. I might be looking at her picture or doing something totally unrelated, and it hits- Ellie is dead. Dead. I hate that word. It's such a cold, harsh word to describe such a warm, beautiful, perfect girl.

I can't stop crying, I can't eat, I can't sleep, I can't focus, and I am angry. When I am able to pull myself off the couch, I feel like I am just wandering. I can't follow any TV show- I don't even have enough attention span for the news. The only thing that does keep my attention is my anger. People say "hate" is a strong word. Yes, I know. And I can tell you with certainty, I hate presents. I hate wrapping paper. I hate Christmas music- I kind of always have, but this year- it makes me want to scream.
And while we are on the topic of hate- I hate people that whine about their kids. And how their kids spilled their peas, or how their kid said a bad word. Or how tired they are because their kid didn't sleep. Seriously people?! Get a real problem! I'm tired too. But not because I've been up all night cuddling my sweet warm chubby baby. I'm tired because I'm up all night thinking about how my baby's body, which is probably cold, is buried 15 minutes away underneath a bunch of snow. I'm tired because I can't keep from thinking I should have done something more, I should have saved her. I'm tired because I don't like to close my eyes because all I see is her face, all swollen, purple and oozing. Next time I hear a mom complaining her baby was up all night, I'm going to lose it. I just want to scream at them. I want to tell them to be grateful for that extra time they have with their child because the last time I saw my baby awake was when I handed her to the nurse as they prepared to intubate her. If I had any idea that was going to be the last time I held her, in that body, I would have never let her go. I would not have left her with strangers. How could I have left her with strangers?...... If you are going to whine about your kids, don't do it around me. I feel like the world is closing in around me. Losing Ellie is more than I can handle. I read somewhere, "empty arms are so much heavier than arms holding a child." It's so true. I feel the weight of Ellie's abscense.
And this week, Max started at the Early Childhood Education building. He's been meeting with his teacher at our house for the last two weeks, but it's different to take him to the school. It's hard taking him there, knowing I am taking MY son to special education classes. I have a special needs child. That's a tough pill to swallow, especially if you already have a sore throat. We started down this road just before Ellie died. I feel like I am failing Max because I haven't done hardly any research on therapies or diets, or anything. I'm not sure if this is the right program for Max. Between two and three is the most critical time to begin therapy for autistic kids. Max is just barely two and I feel like if we don't get our lives straightened up Max is going to suffer. Max has a great teacher and everyone at the school seems wonderful, but I am terrified of making a mistake that could affect him so greatly.

Tomorrow the flooring company is coming to fix our floors. Before Ellie died, our refridgerator leaked underneath the laminate flooring, destroying it. They were supposed to come fix it the day she died but we put it off. Since we waited to have them come, we got black mold growing over what we discovered to be absestos covered linoleium... sure why not?... Right now our dining room sub-floor is covered with misc. rugs, cardboard and duct tape to protect Max's feet from splinters. Normally I would be esctatic to get the floor fixed and get back to the way things should be. But things aren't going to be normal again. When the floor got ruined Ellie was here, now she is not. We should put the highchair away tonight. We will have to move everything out of the dinig room anyways so they can fix the floor. But I feel like I'm betraying Ellie. I don't want her to be up there in Heaven looking down at us, and think we are forgetting her because that will never happen. I'm not sure I'll be able to put it away, or let it be put away.  Tomorrow the floor will get fixed but Ellie won't. It isn't logical, it doesn't make sense, but because of that, I hate our floor too. It might just be the floor that finally makes me crack.


Ellie was always so anxious to get her hands on Max

Ellie's 1st trip to the zoo. She was about two months old.

Exactly on year ago. Dec. 14, 2009.


Sunday, December 12, 2010

A Candle For You

Peanut,
Tonight we light a candle for you on the porch on the table next to your little purple Christmas tree and beautiful picture. A lot of other people lit candles to remember you too, baby girl. After Ma, Kerri & Kaelin left tonight, Max was in bed and Dada was outside with the snowblower, I sat next to your picture and candle and read you a story. I don't know how many times I've said it already or how many more times I will say it before I get to be with you again, but I miss you. I want you back. We shouldn't be apart. I dread the next couple weeks- without you, nothing is the same. I hope you can still feel how much we love you because even though you aren't here with us, we love you just the same.
I hope you can see all the candles around the world lit for you and all the other little angels up there- I bet it's beautiful, just like you.
Missing you,
Mama

Saturday, December 11, 2010

Shatter


"how many times can i break 'til i shatter...?"

Friday, December 10, 2010

Powerless

After an agonizingly long checkout at the scrap booking store where the cashier interrogated me on the use of my purchase (what are you making? a memory box for my daughter. oh fun! i bet she will love it! oh but it looks like some of this stuff is for you... well its all technically for me... how old is your daughter? she WAS nine months old. oh, well she is going to love it. She's dead. silence......), I headed home. Only to be cut off by an ambulance and fire chief truck going full speed lights and sirens. I ended up having to follow them practically the whole way home. Ever since that morning I had to carry Ellie out to the waiting ambulance in just her diaper, covered in puke, the sight of police, ambulance and fire sirens, makes me anxious. 
It all comes back. I can see the police officer walking through the door while I am bouncing Ellie to keep her conscious. The blank stare on her face. When she would open her eyes, they didn't seem to focus on anything, it was like she looked right through us. I think about those moments now, and I pray that she wasn't suffering. It kills me to think that she was in pain. I see her pale, cold little body all alone on the big white stretcher while I sat next to her on the bench holding the big oxygen mask to her face and the paramedic started hooking up machines.  I remember the driver asking the medic in the back with me, "Code 2?"... "Better go Code 3," he replied. I remember the paramedic trying, unsuccessfully to get an IV started in her dehydrated, collapsed veins while we all bounced around in the back. He told me, if she got any worse he would have to put one in the bone of her leg. 
I remember Ellie looking at me with big scared eyes a couple times. Looking right at me. She had to be frightened. I remember not being able to help her. I just wanted to hold her and make everything better. I feel like I failed her that day. I know I had no choice, I had to hand her over. I have never felt so powerless in my life. As a nurse, I've been in emergency situations, but when it's your child, your baby, that came from you, it's different. I wanted to do something- there's no way they would let me. Plus, it was my job to be her mom, not her nurse. But to sit there and watch it all unfold, practically in the slow motion, was gut-wrenching. It's like that nightmare you have every once in awhile. You are being chased or attacked and you open your mouth to scream for help and nothing comes out. 

Today, it's been hard to get the bad thoughts out. Especially after the lights and sirens... so I wanted to see our Ellie. Our healthy, happy, smiley, silly Ellie. This video is from the one and only Girls Night Out Elle had with my Mom, Grandma and I. It was way past her bedtime but she was happy. She loved it. On the way home she was so tired, she got a case of the giggles- I guess not giggles, belly laughs. It was hilarious. I would give anything to go back to that...


video

Thursday, December 9, 2010

In the stars...

Tonight Dave and I went to the cemetery to check on Ellie's Christmas lights. We left the car outside the gates and walked towards her spot. The cemetery starts at the top of a large, gradually sloping hill. Once we got to the stop of the hill, we were able to see her lights, wrapped around her tree, twinkling in the darkness. We wrapped two nets of white lights around the truck of the tree. They aren't tightly secured to the tree, so to me they look like a soft, fuzzy cluster of stars.
As we stood at her gravesite, I was struck by the peaceful beauty of the night. The sky was mostly dark, with dark pinks and purples on the horizon. Large pine trees silouettes surrounded us. Not a cloud in the sky, thousands of stars sparkled high above.
On our way back to the car, we stared up at the vast sky, and I asked Dave where he thought Ellie was. He pointed to a star in the sky. I agreed. But really, I think she's everywhere. I think she's in every star, in the wind, the rain, the sunshine and clouds. It's strange, but now that she's not "here" with us anymore, I see her everywhere.

Which reminds me of a picture Dave took of Ellie through the window this fall... You really can see her everywhere- even in the trees...


Wednesday, December 8, 2010

"Brave Little Soul"

The Brave Little Soul by John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," she asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through her suffering and God's strength, she unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.


The last few weeks I have been wondering if Ellie was only supposed to be here for those nine months and nine days. I wonder if the plan for her was only to be here just a short time. Of course, this isn't what I want. If I could have it my way, she would be here with us everyday and every minute until Dave and I were old and went ahead of her. But obviously, we don't get our way. Maybe, we aren't being cheated out of everything we think we are. Maybe we weren't ever supposed to get to celebrate her first birthday, first day of kindegarten, see her in her wedding dress, love her children. I still feel cheated, don't get me wrong. A parent should never bury their baby. It doesn't take away all my questions about why- why did it have to be Ellie? Why did it have to be our daughter? Why couldn't we get at least get one Halloween, one Thanksgiving, one Christmas, one birthday? But somehow, right now, in my mind, it's a little bit easier to accept Ellie's sudden death if I look at it as part of a bigger plan. We have definitely seen how Ellie has unlocked the love in people. We have received an incredible outpouring of support and unexpecting kindess, especially from distant friends and complete strangers. I always knew there was something special about our Peanut. Maybe it was because she was a "brave little soul."


Is that a halo?


Tuesday, December 7, 2010

Little Stinker

In the two months before she died, Ellie was starting to get pretty hilarious. At about seven months, babies start to get their little personalities, and wow, Ellie was developing into quite the little girl. Even at just nine months, I could see she was going to be sweet yet a little on the naughty side. Ellie pretended to be shy but was definitely a ham. She had a little sense of humor and would have been into everything! My mom jokes that Ellie was going to be the little girl girl on the playground chasing the boys with holes in her dirty tights, her hairbow hanging on by a strand. I'm sure there would have been multiple calls from her future teachers saying, "Ellie is very smart and well behaved, but very chatty." Ellie radiated joy, happiness and light, but she was goofy and was definitely going to be out little stinker!


Our little ham

Our sweet girly girl


Our "up to no-good" girl, she figured out how to swing in her jumper


Our stinker- rejoicing over her control of the Max's Georgie


Our comedian


Monday, December 6, 2010

Six Weeks Gone

Six terribly long weeks have passed since I've held my sweet girl. It's been six weeks since I've smelled her sweet baby smell. Six weeks ago, we had to leave our baby's body with complete strangers in a strange place in the middle of the night. Six weeks ago, we went from living a ridiculously idyllic life to living a complete nightmare.

Six weeks ago was a line in the sand. Everything will now be defined as before Oct 24 & Oct 25 and after. Before, we were so ignorantly and blissfully happy. We had no idea what was headed straight for us. Now, "the after," we are painfully aware that nothing is safe. Six weeks ago, we not only lost the most beautiful little girl, but we lost of our sense of security. Parents always worry that something will happen to their children, especially mothers, but the worry is usually unfounded and for nothing. A parent should never have to look down at their child's unrecognizable body, cluttered with tubes and bandages, and tell the doctor it's ok to turn off the machines- that she's ready to go now. Six weeks ago, it all changed.

As we sat in the porch the other night, we noticed how beautiful it was with the fresh coat of snow and twinkle of the few lights on the small purple Christmas tree. Our lives should be perfect right now. It doesn't get any better than two safe, warm cuddly babies asleep in their cribs, a twinkling Christmas tree and white dusted pine trees. Now, the lights and the pretty trees make me mad. Tonight, while we were out running errands, I saw a many Christmas trees all lit up in the porches of houses we passed by. I didn't know those people in there, but I don't like them. Any of them. I bet they were sitting on their couches enjoying the view of their horribly perfect tree. Six weeks ago, we were like them. Now, we aren't. Now we are different.

Seven weeks ago, we had it all. I could snuggle Ellie all I wanted. I was laughing at her crazy hair sticking up all over the place and her chunky thighs poking out from under her dress. I was listening to her holler at Max to get his attention. I was watching her figure out the world around her. Now, we are trying to figure out the world around us, without her.

It's been six weeks, and every day, every minute, I still can't believe she's gone. I still can't believe our lives have been turned upside down like this. I can't believe that six weeks ago, our Ellie was snatched out of our lives forever.

I miss you Peanut.

Mama and her koala bear

Sunday, December 5, 2010

Signs of Peace

After we spent some time at the Toys for Tots warehouse packaging up toys, my mom and I headed over to the cemetery to check on something special we set up there for Ellie. Dave and I found solar powered Christmas lights, so yesterday we went to the cemetery with my parents to wrap them around her tree. Today, we went to see if they were going to work once they were all charged up- and they did! Dave and I want to go out there one night to see how they look in the darkness.

The cemetery we picked for Ellie is beautiful. It's a memorial garden so there are no monument type headstones, only flat ones. There are rolling hills and a lot of large beautiful trees. Ellie's spot in tucked in between some large pine trees. Today everything was covered in a fresh coat of snow... so peaceful and serene.

While we were there today we saw a hawk gliding above us and it reminded me of the day we buried our sweet girl. It was so obvious that day that Ellie wasn't far away...

The three days before Ellie's funeral were very cold, windy and rainy- actually it was the equivalent of an inland hurricane... But the day of her celebration was beautiful, blue skies and a slight breeze. We all gathered around Ellie's small casket, nestled beneath three pine trees. As Pastor Paul began to read, my husband noticed an eagle hovering high above in the sky, right over us. It stayed there for several minutes, and then it just disappeared. I'm sure it was our Peanut showing she was ok.

The eagle (and an airplane...)
After the service, we handed out balloons to everyone. At her funeral service we wrote messages to Ellie on small pink and purple heart-shaped tags; we tied those to ribbons on the balloons. We counted to three and sent our messages up to heaven. All but three balloons drifted away in a pink, purple, green and yellow mass.

Three balloons got caught in three seperate trees. A green balloon, a yellow balloon and a purple balloon. The green balloon was the one my mom released. The next day the balloon had popped but the paper hearts are still in the tree.


Ma's Balloon (Ellie's Grandma)
The yellow balloon was the one my grandma released. Her balloon stayed inflated for at least a week, her messages are still there too.
Grams' balloon (Ellie's Great-Grandma)
The purple balloon was my balloon. I know this because I wrote her note the night before and glued pink gemstones on the tag and they glistened in the sun.
My balloon and message to Ellie
My balloon stayed in the tree for several minutes and then slowly floated away, all by itself. At first I was upset that my balloon and message hadn't stayed at Ellie's gravesite, but I now think Ellie wanted my message up there in heaven with her, and it went seperately so Ellie knew which one it was.

  I really don't think it was a coincidence that the three balloons left behind represented the three generations Ellie left behind.
Four Generations- at Ellie's baptism, less than two weeks before she died
I found Ellie's burial service to be very beautiful and left knowing that she was at peace. I swear Ellie was there with us that day, comforting us and showing us that she was alright. Thank you for that Little Peanut!

Saturday, December 4, 2010

Pieces of You

My dear Ellie,

Almost all of your things are exactly where they were the night we came home from the hospital without you. Your sweater is on the back of the chair. Your high chair is still in its place in the dining room. Your port-a-crib is still set up in the porch, filled now with your funeral programs, things we've brought back from the cemetery, gifts. Your bottle drying rack is still on the counter, the bottle racks from the dishwasher, sitting on top. Even though these are just things, they are your things. They are pieces of you.

The last story I read to you is still sitting next to the nighstand in your room, right where I left it before I put you in your crib that last night. Your thermometer is sitting on our dresser, I just don't want to put it away yet. Your sippy cup of water is still on my nightstand. The last time you took a drink out of it, you must have had sticky medicine on your lips, because I can see you little lip prints on the top. Everytime I see it, I remember giving you a sip out of it and then you snuggling back into my chest. Some people might think that it's crazy I haven't put that cup away yet, but I don't have you so I want any little piece of you that I can keep. It's the same reason we haven't cleaned your little handprints off the bathroom mirror. You can't hardly seem them, but they are there and we know it. And I just can't bring myself to wash them away.

In my mind, I know just because we put away your stuff, it doesn't mean that we love you any less. But my heart feels like with every toy, book, cup or sweater of yours that gets put away, we move a little further from you. At first I couldn't bear to look at your things but I couldn't bear to not look at them either. Now, I like that when people come into this house that don't know you are now an angel because it looks like a baby lives here. I'm worried that once your things get put away, it will be like you weren't even here. Of course, we will always know you were here. We will always have your pictures and your favorite things out. You will always be in our hearts.

I know eventually we will have to put some of your things away but right now I like them out. I love the reminders of you. To me, your room is a peaceful, it doesn't make me anymore sad than I already am. Honestly, I don't know if I will ever be ready to make your nursery into someone else's room or office. That was made especially for you, I want it to stay that way.

I miss you so much baby girl. My heart aches to snuggle you and rub my face on that fuzzy head. I am going to go curl up with your blankies and hope I have another dream about you. Thank you for coming to see my in my dream last night- it was amazing.

I love you Ellie Lauree. Whether your sweater is on the couch or put away in a closet, I love you. Whether your bouncy seat is in the bathroom or in the storage room, I love you. Whether your car seat is in the backseat or in the basement, I love you.
Mama loves you!


All tucked out after playing in the kiddie pool


Love those hands- one finger was always sticking out in a different direction than the others.


Friday, December 3, 2010

Permanent Detour

Today would have been a perfect pj day. Snow falling, cold house.... Some holiday movies, I would have cuddled with Ellie on the couch during nap time instead of doing chores. Or maybe I would have snuggled for a little bit and then put her in her crib so I could wrap presents. There would have been Christmas lights twinkling on the tree in the porch and on the stair railing. Most of the Christmas shopping would already be done and I would have the cupboards stocked with supplies to make all sorts of Christmas treats. I had been fantasizing about this Christmas season since I found out I was pregnant with Ellie. A two year old and almost one year old- the perfect ages for Christmas. The excitement over presents, the family gatherings, the cookies...
Instead I got Max dressed and forced myself into jeans and a sweatshirt. Instead I wrestled a screaming two year old at the post office while I tried to buy stamps so I can get Ellie's thank you cards in the mail. I had to rummage through the empty cupboards to make Max lunch. There are no twinkling lights on our big Christmas tree or the railing. There is a small purple Christmas tree on the porch and a candle in the front window.... Reminders of our girl.

Plans are a funny thing. Really they don't even matter. You can do everything the way you "should" your whole life, make all the right choices and have all your ducks in a row. But in the end, you don't have control over much. I didn't think life could get much better. Yes, we had a hard time getting pregnant but really once the kids were here, I didn't really even care about that. I felt like we did everything we could possibly do to ensure that our happiness was permanent. But life happens. Things that aren't fair and sometimes you just get kicked in the ass, over and over again. In the last two months, Max was diagnosed with autism, Ellie died, our fridge leaked and ruined our kitchen and dining room leaving behind black mold and don't even get me started on the asbestos. All of a sudden we are being shoved down a whole new path, a permanent detour. None of this is what we planned.
I like to know whats coming, I like to plan and organize... yes I like to be in control of my life. If you do "A" and "B" then you should get to "C." Well apparently life doesn't work like that. To say that's a hard lesson learned is a vast understatement. But I gotta say, I don't think we are without some control. I think you always have a choice. I didn't pick this for our lives, but I can pick how we will react to it.

Our plans... Man, I  miss that face.


What life gave us...


What we do have control over.


Thursday, December 2, 2010

Mommy

Today I talked to the intensivist who reviewed Ellie's case. What an amazing doctor, even over the phone he was wonderful! He had some autopsy results and wanted to share them. Ellie had what is referred to as functional asplenia- meaning she had a spleen but it didn't work. They think either early in life or, mostly likely, while in-utero, the blood supply to her spleen was compromised. Her spleen died and was basically ineffective- it didn't function. He said there was no indication to assess her spleen in her past and without that, there was no way to know her spleen was "broken." I will be meeting with him in the next couple weeks to further discuss her autopsy results and look over her charts.

I told the doctor I still feel a lot of guilt. I had a gut feeling something was wrong and never pushed to find out what it was. I feel like I could have stopped her from dying. After all, I'm her mother, that's what we do- we are supposed to protect our babies from harm. Without missing a beat, the doctor said, "You feel guilty because you are a mother. You feel like that because you are a mom that loved her baby. Even though you could not have prevented this, you will feel like you could. You would feel guilty if you were outside with your child on a perfect sunny day, a freak lightning bolt came out of the sky and struck your child. You would feel responsible. Because you are a mother. Dad's are shattered too when a child dies but it's not the same. The connection between a mother and child is almost indescribable."

Doctor was right on. My brain knows I shouldn't feel guilty. My heart hasn't got the memo yet.



Ellie's pink & purple tree and specially decorated Christmas wreath at the cemetery
 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

On a much brighter note, Max said MOMMY today! Intentionally! To me! Looking right at me! AND he said, "bye bye daddy!" This is a huge deal for Max. He has never referred to us as anything. He has never said Mommy before to me. Ellie said "Mama" a lot. After she died I didn't think I would hear that for a very long time. That was a much needed and appreciated gift from him today!



Little Man


Wednesday, December 1, 2010

Bundle of Joy

When the home care nurse came for Max's newborn jaundice check she kept saying over and over again, "what a little bundle of joy." It drove me crazy. As obnoxious as that phrase is to me, it is true. Babies are little squishy bundles of joy. And Ellie was no exception.
From the beginning, I described her as the "dream child." She was so easy-going, good natured, funny, cuddly, sweet... Ellie was so curious and observed everything around her. It obvious that she got so much enjoyment out of the world around her. Ellie, in her short time here, taught us to find joy in the world around us, especially the little things.

I have a huge fear that people will forget about Ellie. Her time here was so short and by next summer, she will have been gone for longer than she was here. I am scared people will quit talking about her and get sick of listening to us talk about how amazing she was. I worry that soon all we will have left is pictures and videos...

It sounds cliche but Ellie really was a bright light in our lives. She literally lit up a room with her goofy smile and infectious laugh. You couldn't be in the same room with her and not smile. Our girl isn't ever coming back to us, but I know that it doesn't mean her light has to quit shining.

We are in the process of starting a charity in Ellie's memory. Our mission to keep her light shining and to spread her joy and happiness to as many people as possible. Apparently, starting a charity is a rather lengthy and irritating process that involves the IRS and lawyers... sigh... so it will be a little bit before we are ready to officially establish the charity. But we wanted to do something in the mean time...

So tonight we went to Target with our parents, siblings, nephew and grandparents and went on a huge Toys for Tots shopping spree using some of Ellie's memorial money. It's really hard knowing we don't get to buy Christmas presents for Ellie- we never got to, but I think it would make Ellie very happy to know what joy other children will get from those toys. Thank you so much to everyone that has contributed to Ellie's memorial fund. Ellie's light has been reflected in many people's kindness and because of that light, so many kids will be very happy on Christmas morning.

Little Girl~ we miss you so much and would have loved, more than anything, to be buying Christmas presents for you tonight. We hope it makes you happy up there in heaven to see all those presents that will bring so many kids joy. We promise you won't let people forget about you. We won't let your light burn out. Thank you for teaching us what's really important in life. Thank you for being our little bundle of joy.
Love you baby girl, Mama

15 carts full of joy and happiness!


This is for you Elle Belle!


We all picked out at least one things we would have bought Ellie for Christmas


Our bundle of everlasting JOY