Elliott Arcile Reed

Elliott Arcile Reed
6 lbs 8 oz 19 3/4 inches

Tuesday, October 21, 2008

Shoot...Miss TMI

It's about time...finally updating the blog and getting to desperately needed chores. This weekend I finally made the time to clean up our yard...we were looking pretty trashy with so much junk sitting outside our front door from moving. Stuff we didn't know what to do with we just left out in front of the house in this old "flower" bed. I quote the word flower because really it was a trash bed with two nasty bushes. I dug out the bushes and put in several items and plants that we received at Elli's visitation and funeral. Here's my handy work!
I love this little statue of a baby sleeping in Angel Wings. We received it in loving memory from our softball team that we played with in Maryville. We played co-ed softball for 3 years, so much fun, one thing we will defiantly miss living up in Iowa. Thanks Bridget, Stuart & Tiffany, Mooney, Laura, Becky P, Becky C, Jeremiah, Shelia, Julie C, Marge. & Jill.
We got this praying Angel from my parents, we picked it out because we thought it looked so innocent just like Elliott was.

This is jumping around a bit, but that is how the pictures uploaded. This is several decorations at Miss Elliott's grave. The pumpkin of course is from mommy and daddy. The sorghum on the pole is from Grandma Teri and Grandpa Aaron. You can't see it very well but there is a purple Angel Wind chime hanging from the Shepard's hook from Brian's cousins Craig, Andrea, Ryder and Cheyenne. The tiny white pumpkin ( used to be painted purple but washed off) is from Shana, a girl that goes to my sister's before and afterschool program. The rest of the decorations are from Elli's Aunt Staci. It was so incredibly bittersweet decorating Elli's grave for Halloween. It actually made me pissy the rest of the day. It seemed for lack of a better word, Dumb to decorate a grave when I SHOULD be decorating a room or picking out a Halloween costume for Elli. I think it would have been funny to have Elli be a monster for Halloween instead of something super girly or pink, while she would be cute as a butterfly or princess, I think a little monster would be even cuter, so in my mind she is the cutest scary monster ever!

Here is the front "Elli Bed" I love the bark, it was donated by my mom since I was too much of a cheap skate to buy it myself, but it looks AWESOME! Even Brian was proud of my handy work. All of the plants are mums. Two were from our friends Brian and Diana Schmitz and Eric and Beth Hornbuckle. The other was from a family friends Curt and Sharron Husz.

We also received these two markers from my parents and they were set up at Elli's Visitation. This one says:

If Tears Could Build A Stairway

And Memories A Lane

I'd Walk right Up to Heaven

And Bring You Home Again

Our Hearts Still Ache with Sadness

And secret tears still flow

What it meant to lose you

No one can ever know

The little rock with Elli's name and an Angel picture on it is also from our softball team, Thanks guys! Oh and yes, those pumpkins are real. I am a super dork and spray paint them clear so they don't rot as fast once it starts frosting in the mornings. Brian says they look kind of fake but I think it makes them look cleaner...who knows.

This little plague is what the Angel is looking down at. We received it from friends of mine that I worked with at St. Francis Hospital...Thank you so much Andrea, Melissa, and Ambrose...We love it and it is such a true quote.

And now for what the title means....I made three people cry today. Let me back up for a second. I have been doing more orientation at my new job and there are three of us doing it. The other two are girls about my age, one is going to be a CNA and the other a Unit Secretary. Anyways, we had to tell a little bit about ourselves, and when it was my turn, I didn't really mention the last 3 months other than I had just moved. The questions got progressively more personal and then the dreaded question...."Do you guys have any kids" (both of the other girls each have children but are not married, so they assumed me being married at least had one)

I knew this question was going to come up sooner or later at work, and I am sure that they were thinking that I was an idiot because I didn't answer right away, I mean it's not like it is a trick question or something that I would need to ponder but I just stared back at them for a moment. Then all the sudden I gave a fairly detailed explanation of the last 7 months of my life. Well...20 minutes later and 4 crying women, I had told Elli's story to 3 complete strangers. A simple yes but she is in heaven would have sufficed, but for some reason I felt compelled to tell them almost everything. We spent another 15 minutes talking about Elli and CDH (the nurse doing the orientation had never even heard of it and she has been a nurse for 20 years!...I hate that). I am sure that those girls are thinking OMG, TMI (oh my gosh, too much information)

Brian has been so busy with harvest, basically working constantly trying to get the crops out. So far we are done with beans and working on corn. He actually got home fairly early today because it rained today. It was nice to get to see him before I was crawling into bed. He looks so cute in the tractor, I will post a picture later. Oh my camera is dead, officially. I cannot get it to charge up, I don't know if it needs a new battery or what, but it hasn't worked since we were at Children's Mercy.

So much going on and time is flying by. I don't get to start actually taking care of patients until next weeks some time, so I will keep everyone updated on how that goes. I know it has been a while since I updated, but just couldn't seem to make myself sit down and type so sorry this is so lenghty, guess I need to get some stuff out. Still checking up on all my CDH babies though, so far so good for all them. Also, I had a great lunch and afternoon with Liviana, her mom and brother and sister last week. She is so cute, you would never be able tell the she battled CDH. It was so nice to see a healthy baby survive this terrible thing.

~Hey Sweet Elli~ Can you believe that you have been away from mommy for 6 weeks. It feels like an eternity since I got to smell your sweet baby smell or feel you angel soft baby hairs, but I got to do both of these things the other day. Some of your amazing nurses sent us everything that we left behind in Kansas City. In the box was several items, a plaster replica of your foot and hand, the clothes they put on you for mommy to hold you after you were already gone, the blankets they wrapped you in, your binki, one of your little stuffed animals they used to position you, all the things that were hanging in your room, and even your blood pressure cuff. I know it sounds weird, but I sat on the living room floor and just smelled all of it. I can't believe how much the blood pressure cuff smelled like you. The other stuff didn't really, because you were not in the little onesie very long. I couldn't believe it Elli, but it was a preemie outfit. I guess Mommy never realized what a little girl you were. In the box was also a memory book with a lock of your hair in it. I wanted to stroke and kiss every hair under the piece of tape, but didn't want to ruin it. Elli, I am so mad. I don't want all that stuff, I want YOU, and I cannot figure out why you are not with me. Sorry that I don't visit your grave everyday, but that too makes me so sad and mad. It makes me furious to know that you are just a few feet below me, but I cannot touch you. The dirt there on the ground is so dirty, you are prefect and I hate that that pile of dirt is what is being displayed. There is still no headstone either. I feel so annoyed that I have to decorate a grave when I should be dressing, and decorating you. Your daddy and I have been racking our brains trying to figure out what we did wrong to dissever all of this, to have a beautiful baby suffer in pain with this disgusting defect. To have you ripped from our lives, to never know the sound of your little feet on our newly refinished hardwood floors. To have to live in constant wonder of what would have been. To have the eternal ache in our arm and hearts. To want so badly to have other children, but live in fear of losing yet another baby. To try to justify in our minds why this had to happen to us. To have to rely on your Sugarbear to cuddle with because you are not here. To know that this will happen to other families and babies, and know there is little we can do to help. To never hear you call out for your mommy and daddy. To always think of you when we are at a wedding and the father daughter dance comes on, knowing that daddy will never have that moment. And to Always miss you. I wonder if you miss me too, Elli. I wonder if when I get to heaven if you will still be a baby and I can raise you for eternity, be a part of all that was taken away from me, or if you will be all grown up. I wonder if you will recognize me, or if I will have changed too much for you to notice me. I think of you always, every day. Elli, I hate the rainy days, they make me remember the day you were taken from us, that drive home was 3 of the worst hours of my life. My body was drained, physically, emotionally, and spiritually. I feel like I am getting filled back up, but it is still so hard for me Elli. I don't know how I am supposed to rejoice in a Lord that would make you suffer for days and they take you for his own. I am still certain that I need you more than he does. I don't care that heaven would be boring without young people. Or that people say "oh she was too beautiful for earth". I beg to differ. You were too beautiful to be taken away, I wanted to show your beauty to everyone I ever came in contact with. It amazes me how pretty and tiny your little features were. I love to think about your perfect skin, nose, lips, and eyes. I can't believe that your daddy and I were able to make such a precious little girl, luckily you got most of your looks from mommy! Well sweetie, it's getting late. I am going to head to bed and most likely dream of you which is what I spend most of my nights doing. Daddy sends his love and kisses sweet Elliott. Breathe Easy~ Mommy


Kaden and Angel Ava's mommy said...

First of all, yes my ticker works. I wonder what is going on with yours???

Second, your letter to Elli brought tears to my eyes as I feel your pain. I am understand exactly where you are coming from. I also understand your fears of having another baby. Whatever comes your way, you will be blessed. I remember somebody saying to me after Ava passed that they never understood why God would give anyone a sick baby and then take them away. He then said after reading our blog that he can see that we would rather have had the chance to be with Ava, to love Ava then to have never had her at all...which is soooo true, as I am sure you understand completely. With that being said, I also understand the complete confusion about why things happen and why to certain people. I feel very blessed though that God brought Ava and Kaden into our lives as I feel that we are/were the right parents for them. I would not have wanted them to have any other parents and I would never trade them for any healthy child, which I know you would say the same. You and Brian were the best parents for Elli, that is why God chose you guys. He knew that she would receive the love and support she needed for the month she was here on earth. He knew that your love was meant to be given to Elli. I don't think either of us will completely understand why everything has happened the way it has but I do think that Elli and Ava have taught not only us as parents lessons that we would never learn otherwise, but they have also taught many, many others lessons they may have never learned.

I am sure this is getting pretty confusing and not making much sense, saying that I really need to go to bed. I should have kept it simple and let you know that I do completely understand where you are coming from. My thoughts and prayers continue to be with you. Sorry this comment is so long.

My Three Sons said...

Your a wonderful mother and it is okay to be mad. I cannot understand why God does the things he does but I know that I will make myself crazy trying to figure it out. I know Elli is looking down on you and she misses you dearly. I'm sure she will wait for you to raise her once you meet again. I love what you did with your yard. You don't have to go to the grave everyday to visit her. From the looks of the pictures, she is right there in your flower bed.

Take care and thanks for the update. I still check in often to see how your doing.

Grandma Reed said...

My heart still breaks for you and us. When I found out how bad Elli's CDH was I was mad at God too. I wanted the miracle of her to be well. But that wasn't to be and if I were to dwell upon the why's and stay mad, I'd miss out on so much more. It is easier to accept what is and trust in God. I watch you with my son and am so glad you are there for him. You two seem so right for one another.
I miss you both terribly and know there is nothing I can say or do to make the hurt go away. Don't dwell on the hurt too long but count your blessings. Elli was a wonderful blessing that we will see again. A husband who loves you is a blessing.
I better get to bed. I have been teary all day. Just know that I love you. I love you all 3.

cbgricci said...

Thank you so much for the update, as I still think about you all 3daily. It is my daily routine now to check your blog and then all the other blogs of CDH babies. Elli is so lucky to have you and Brian as parents. God chose well. Oh,your flower bed looks wonderful! I am also glad to hear work is going well. There are thunderstorms right now in Omaha, so maybe Brian will be able to snuggle with you today :) Best wishes always!
Take Care, Brandi Ricci

Fer said...

Dear Cassi, again, your letter to Elli brought tears to my eyes. I am so sorry that I cannot describe it with words. You have a friend in me, even though we haven't "met" you know you can count on me. You have my email and you can talk to me whenever you want as I am here for you.

Kyler's Mom said...

Hello Cassi,

I am Kyler's mom. And yes Kyler does have an Uncle Sonny. I take it you know of him? I kind of feel weird because I feel like I know you more then I really do just because of your awsome blog. I have been an avid Elli fan. You are the one who has actually inspired me and led me to the blogging world.

I work at Northwest Missouri Cellular and know both you and Brian from when I worked in the front office. When I heard about you baby Elli my heart broke for all of you. I now watch and fallowing many other CDH babies as well. I know I hear a lot of CDH mom's say they want to bring awareness to CDH. I want you to know that you are doing a good job at that and I am tryng to help. When I tell any friends and family about my new blog the story always starts with me fallowing Elli's blog and her battle with CDH. I have introduced CDH to many who had not heard of it before.

I really enjoyed you post today and love your pictures. You are so strong and I can not imagine all you have been through. You deserve mother of the year.

Stay strong! You have more people praying for you then you know.

Kyler's Mom - Christy

creagray said...


Your comments made me think of this poem:

Do not stand at my grave and weep,
I am not there, I do not sleep.
I am in a thousand winds that blow,
I am the softly falling snow.
I am the gentle showers of rain,
I am the fields of ripening grain.
I am in the morning hush,
I am in the graceful rush
Of beautiful birds in circling flight,
I am the starshine of the night.
I am in the flowers that bloom,
I am in a quiet room.
I am in the birds that sing,
I am in each lovely thing.
Do not stand at my grave and cry,
I am not there. I do not die.

You don't have to go to Elli's grave to be near her, but you know that already. I think of you and Brian and Elli often.

I admire you for your stregnth and honesty, you are a wonderful mother and a strong woman.


shana said...

dear cassie its shana thanks for noticing my present to elli and i hope you love it i love you guys love shana

casau said...

cassi and brian,, you dont know me but i wanted to tell you guys what an inspiration you guys are! i havent had this terrible CDH in my life and i only learned of you guys and CDH thru a distant friend. it is horrible! Cassi,, i dont find any!!!!!!! fault w/ you being mad! I AM MAD! A nurse of 20 YRS!!!!! thats a SHAME! i cried at my desk when i learned of Elli's passing. what a FIGHTER, and beautiful baby she was!!!! i also find it inspritional all the support, strenght, and belief that all of the families have(and keep)for one another even though you guys dont know each other! keep strong and keep the faith!!!

Anonymous said...

your post brought tears to my eyes. I wish you were closer so I could hug you. You're right...you should be picking out a halloween costume for Elli and not decorating her grave.(although it looks great)
It's is so hard to understand and comprehend the Lord's plan. But I do know, that through your journey with Elli, you guys have brought awareness of CDH to tons of people. People all over the world have united in prayer and faith.
Your Elli will never be forgotten.

Miss you tons!

Jenni Halley said...

I was trying to think of something to say to make you feel better. Then I remembered that nothing anyone says can really make the pain go away when you've lost someone you love so much. I have blogged for a long time, and I have to say that you have a beautiful way with words, and I am happy to see that you are getting your feelings out. I like the way you write to Elli and tell her how you feel.
I had a miscarriage early in pregnancy between my two daughters. My loss doesn't even compare to yours, but I have always worried that I am the only one who remembers that baby. It made me think of that baby when I read of you telling your new co-workers, and I was thinking that telling that story was real, it let them know that Elli is real and that your pain is real. It let them know the kind of person you are and the loss you have endured. And no doubt it let them know how much you love her. So complete strangers or not, you got to tell Elli's story. We each have a story that starts and ends. We are heartbroken when they end too soon, like with Baby Elli or little Abby Neff or like my husband Brian. I try to remember that my story with Brian isn't over, that I will one day see him again and spend eternity with him, that our story will really someday end like a fairy tell when we are in Heaven. I know that will be for you too. Until then, take care of you and Brian, and keep sharing the love you have that brought Elli into this world and loved her to Heaven.
Many blessings now and always.

Alex & Ingrid Houchin said...

Hi Cassi and Brian,

Thank you so much for your wonderful comments. Our most heartfelt thoughts go out to you and Elli. What a wonderful little girl and she was such a fighter! There are no words to describe what you must be going through. We admire your strenght,you are such an inspiration to us all!
We will keep you in our prayers.
Ingrid, Alex & Alina

shay said...

omg cassie and brian i am soo in tears right now i a m crying my head off those letters you right to elli brings tears to my eyes 24/7 omg i miss baby elli so much i never got to even see her but i wish i did i no i love her thow theres pictures all over my room that say i love elli or angle elli and i now how many pictures there are in my locker that says baby elli my heart belongs 2 u
and how much i miss her oh it makes me wish that she was still here i alawys do i go and see her grave and want to cry and cry i start balling when i go i love u guys love shana lana michael bailley chad and chelse we love u
expecially shana and lana lol we love cassie brian and ANGLE ELLI

Mary T said...

Hi Cassi~

Thank you for updating Angel Elli's blog. I love what you did with her garden, it looks awesome.

I read this on one of my little caringbridge friend's site and thought I'd share it with you.

Telling It Over Again.

In each re-telling there comes a little bit of healing,
a little more acceptance of the reality of our loss.

In each re-telling there comes another acknowledgment,
of the uniqueness of the personhood
of our precious missing child.

In each re-telling there comes a little less uncertainty,
a little more internal peace
of the finality of their death.

In each re-telling there comes a greater recognition,
an important affirmation of the memories we hold dear.

In each re-telling we seek a patient audience, who'll graciously accept our need to tell them one more time.
(c) Miriam Blake 1997.

Share your story of Miss Elli with everyone. Continue to spread CDH awareness.

I enjoy reading your updates and your letters to your sweet baby girl, Angel Elli.

Just wanted to let you know you, Brian and Angel Elli will ALWAYS be in my thoughts and prayers. You are all AMAZING.

May you be blessed with Angel Kisses everyday from your precious little Angel Elli.

Love you,

Dawn T. said...

Elli and both of you are still in my thoughts and prayers. Please know that we're here for you if you need to talk, cry, vent, etc.

I wanted to let you know that there is a new CDH blog ring for families affected by Congenital Diaphragmatic Hernia. We would be honored to include Elli's blog.

This is a service to all CDH families to help us keep up with CDH blogs and to support and encourage families that need it. You can view it on our blogger blog at http://cdhsupport.blogspot.com/

As you can see, it does not list CHERUBS or any CDH group and it is free to join. You can click on Previous and Next and surf from CDH blog to CDH blog.

You can add it to any blog - myspace, blogger, wordpress, live, etc. Make sure to add your CHERUBS site blog to this as well!

To join, go here: http://www.ringsworld.com/cdhblogsring/join.html

I hope you have a wonderful weekend!

President & Founder, CHERUBS
mom of Shane (1/28/93-9/11/99), LCDH x6, vent 1.5 yrs, oxygen 2 yrs, trach 2 yrs, Mic-Key feeding button, deaf 6 yrs, sight impaired, ASD, pulmonary sequestration, hypospadius, recurrent pneumonia and blood infections, hospitalized off and on his entire life, lost to gastropleural fistula - loved matchbox cars, Sesame Street and books, walked, signed, was a happy little guy!

Millie said...

Hello, I am new to your page, and although I don't understand about CDH or losing a child, I do understand having a sick child and wondering what we as parents could have done for our kids and us to deserve something like this. My son Colin has Hypoplastic Left Heart Syndrome (HLHS). He was born without the left side of his heart. He has had eight surgeries, four of them open heart. I'm not here to talk about him, :), but wanted to let you know you are not alone. I have the same feelings of "why". As for other children, I have two older girls, and then Colin, and had another girl after him. I was scared to death something would be wrong with her, but she is perfectly healthy. Like I said, I don't know much about CDH, if it is a hereditary thing or not, but you can't stop living your life, and I wouldn't think that Elli would want you to either. She will still be a big sister, and the precious little one would have her very own angel watching over her. God bless,
Millie and Colin-HLHS

Elizabeth said...

From another Mom of an angel...I put all of my daughters blankets and things in a ziplock bag with a piece of acid free paper. It has been almost 9 years - and if I go to that bag and open it - I still can smell her.

Still it brings tears but I have more good days now and it does get easier. Time and your love never ends. Ever.