Elliott Arcile Reed

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

Monday, September 22, 2008

When Life Gets Too Hard To Stand...Kneel

This weekend was pretty jammed packed for me at least. Went to KC to Darci's bachelorette shower, it was very fun, went out for pedicures and supper at the GrandFaloon and then just went back to a hotel suite where all us girls just sat around and gabbed. Before we met up with Darci, her step-mom and sister took me to The Primitive Peddler...the store is amazing, so much cute stuff and basically I wanted it all. It is a home decor store and everything is antique looking. I knew that I would not be able to get what I wanted considering I wasn't driving and the stuff I liked was pretty big. Good thing that the rehearsal dinner for her wedding is in the same town ( I already warned Brian that I am going to do a little new house shopping when we go). There was a room sign that I loved, and it basically summed my life up right now....
When Life gets too hard to Stand...Kneel
That is so how I feel! I have been praying more in the last 6 months than I have in my whole life (up until the age of 18 I basically NEVER missed church...so that was a lot of praying too!). At first when we were diagnosed I was mad, mad at the ultrasound tech in Maryville for essentially missing it, mad at the doctors for giving us such a good prognosis and then taking it away at every ultrasound there after (Elli started out with a 90% survival rate based on organ involvement and lung to head ratio and by the next ultrasound was below 50%, and finally we stopped asking about survival and lung head ratio because it just made me more mad) mad at myself for being so cautious (I had no showers, purchased next to nothing, and did not decorate a nursery) and at times mad at God. Why would God do this not only to us, but to an innocent unborn baby. They deserve no pain, it isn't her fault that this happened, and yet she will have to endure so much just in order to survive. Why would God ever do this to a baby? I guess this is the million dollar question.However our pastor made an interesting point, it is so easy to blame God for the bad in our lives, but hard to credit him with the good. The fact is that God made man, man made choices, and the choices are reflected in every day life. If CDH is caused by some sort of chemical or something along those lines (a researcher on sheep thought that it might be a chemical used on farms...long time ago, not widely accepted) either way man made those chemicals. God gives us life, it is what we choose to do with that life that is up to us. It is not God's fault, it is no one's fault and every one's at the same time. It is called life and humans. I guess if I am going to stick God with Elli's passing, I will also have to praise him for giving us the doctors and nurses who know so much to have kept Elli alive for those precious, unforgettable, amazing 20 days. He gave life to the person that invented ECMO, to the surgeon's hands, to Dr. K's awesome brain and insight. Of course when Elli was taken from me to meet her maker, I was blaming God, not praising him, but now that I have time to look pack (and calm down) I can see that there were good things that he needed to be credited for. Holy cow how did I get way off on this tangent...sorry.
Anywho, the bachelorette party went well, and on Sunday we traveled to Lamoni Iowa to watch my nephew Aaron play football, he had a sack and a fumble recovery, and his team won! I am not sure what position he plays but I know it was on defense. It was so cute so see all those little boys running around. He plays on the 5th and 6th grade team, and they even have cheerleaders ( my school was small and there was no little league football and def. no cheerleaders that young). Afterwards we all went back to Brian's sisters house for her husbands birthday. I got the pleasure of reading about 20 books to my nephews (Kyle and Kevin they are twins who are 3). It was good to be around them, but it made me miss Elli even more. It was so cute Kevin came up to me and was patting my belly (we had told him that there was a baby in there and he had felt Elli kick a couple weeks before she was born). He didn't really say anything, but just kept patting it as if to say...where did that baby go that was in there, because honestly I sometimes do the same thing too.
I got a call from the breast milk bank in Ohio, I think that Children's Mercy is finally going to get that milk out of their freezers. I was told that I could donate my milk, but I just figured that most large cities had milk banks. Not the case, the closest is in Iowa, but I guess they don't accept out of state milk. Either way, I did a phone interview of my pregnancy and lactation habits...I passed so now they are sending me more paperwork and I will have to submit a blood test and then they will be able to take all Elli's milk and give it to sick babies. I am glad to know that it will get used, man I worked hard to get all that, I would hate to see it all thrown away.
I go to the doctor this afternoon to get released to go back to work. I know it has only been 5 weeks, but since we are moving at the end of the week, I wanted my follow-up appointment to be with Dr. F in Maryville since he has known my whole pregnancy history.
Sweet Elli-
Last night was excruciating, my heart literally ached with sadness. I miss you so much. Reading to your cousins made me long to hold and touch you even more. I could imagine you sitting there on my lap between those two ornery boy just watching their every move. It has seemed harder lately, knowing that things will be going back to "normal" Mommy will be going back to work soon, and daddy starting a new job. It is going to be so hard moving to OUR new house. You were supposed to be moving with us. It is going to be so hard going into your room and not seeing your beautiful smile. I had to leave the door shut when I was there last week, it was just too hard to see. Looking at your pictures helps, but those darn frames are so pointy when I try to hold them in my arms. Daddy misses you too, we love to talk about you and what might have been. I insist you would have been a girlie-girl always in dresses, but he says that he would have taken you hunting and you would love cammo. We could compromise...a cammo dress. I picture you in every stage of your life and it breaks my heart. Last night lying in bed missing you, daddy asked what I needed. I told him that I needed my angel to come back to me. I know that is impossible Elli, but know that I dream of the day that I will be able to come back to you, back to where we all ultimately rest...until then, say hi to Parker and Will I know that you three will be the best of friends. We miss you dearly sweet Elli, breathe easy!- Mommy

30 comments:

Lillian'sheart said...

I have yet to read a post of yours where I don't end up in tears.

I pray for you every day.

With love,
Laura Davenport

Grandma Reed said...

Cassi,
I too thought about Elli while you were reading to the twins. I think she was smiling down on you. I dream of her and there are never any IV's or tubes. I never thought about it but she is never crying in the dreams. That was a pleasure we didn't get to hear. No sounds. She is always smiling in my dreams.
I think she might have been a tom boy in a girly dress. A very loved little girl. She is and was very loved in the short time we had her here. I am sure Dave's sister Martha, Tara, Will and lots of babies in heaven are telling of their wonderful parents and the love they felt and look forward to seeing again. Life goes on and we live with the Hope of seeing them again. I love you Cassi. I love you all 3.

Amy AKA "Baba" said...

Ditto what Laura said.

You are an amazing mommy!

Amy

Fer said...

Dear Cassi... I type this with tears in my eyes. I don't know what to do or what to say to make you feel better. All I know is that I am here for you whenever you need me. You have my email address and you can write to me ANYTIME.

And about the question... WHY?... I still ask it sometimes, it's not fair... But God has a plan for each and everyone of us, we don't understand it, but I bet Elli does now and she is taking care of you from Heaven.

My Three Sons said...

Cassie, can you e-mail me at Studio213_kc@sbcglobal.net? You wrote something and I have a great idea.

Thanks,
Kaci

Craig and Andrea said...

Cassi,
Sometimes you just have to be mad! That's just the way it is. You are a loving mommy and you just want an answer. You keep asking why and you don't get one, so your MAD. But someday you will get that answer, it may not be tomorrow but it will come to you. I know how it is to be mad & want to know why - when Ryder was born I had alot of those mad at the world days.
I admire the strenth you two have individually and as a couple, you and Brian are both an inspiration to so many. All three of you are in our thoughts everyday, if you need anything we are always here.

Love, Andrea & Craig

Anonymous said...

Dear Cassi,

I too have not been able to read a post without crying. I think my co-workers think I'm crazy or something. :)

Your story is so much like my own. We had Parker's room ready before we knew about her CDH. Coming home to it without her was pure hell. I kept that door closed for months. At least 6 before I ever went in. And when I did go it it was because I found my husband in there at 3 in the morning holding her teddy bear and crying his eyes out. I loved and hated that room for so many reasons. When we moved to our new house and I had to take her room down I had a nervous breakdown. I finally managed to get through it and with each clothing item, shoes, blankets that I put away I cried my eyes out. I yelled and screamed and laughed and cried some more.

Seeing my niece and nehpew was so hard for me. It still is sometimes but they saved my life. I too find myself dreaming of the different stages of Parker's life. Her first word, her first tooth, her first day of school, her high school graduation, college, her wedding and her children. I hate CDH for taking those away from me and for taking them away from you.

I know that my sweet angel has taken your sweet angel under her wings and is showing her the in's and out's of Heaven. I know they are great friends and that they have a special CDH club. :)

I promise you from the bottom of my heart that one day you'll smile again and that you'll be able to laugh again. You are an amazing mother to Elli, Cassi. You are an inspiration to so many people!

Ashley and I always tease about what kind of girl Parker would have been too. He swears she would have been barefoot with overalls and riding the tractors with him and I swear she would have been a diva from head to toe. Much like Elli.

Imagine Elli with her wings and halo. What a sight, Cassi. It brings tears to my eyes.

I wish I could ease your pain but since I can't know that I am here for you whenever you need me. Your angel will forever be a part of my life and I thank you so much for that!

All our angels are breathing easy now....

Love you dearly,
Jes

kmm0305 said...

I had just dried my eyes from your beautiful post when I had to dry them again after Jes's amazing comment. You two have two wonderful daughters and are two awesome mommies yourselves; I'm glad that the one "good" thing CDH can do is bring people to meet who may have otherwise never have known each other. I know both of you will do amazing things to honor your angels.

Kristyn

Emily said...

Hey

Seems that you to are doing great and I can't wait to see your new house. Cassi I love how you just keep going on and on becasue when I see what you have wrote I get so excited and I just drop everything I am doing even if it takes forever to read. I know I'm a dork but sometimes I even go back through and read the things you post more than once.
Elli its so funny how mommy and daddy try and define wether you are in heaven shopping and getting pretty dresses or maybe you are hunting the deer and all those boys are so mad becasue you are much better than they are but I agree with mom and dad I think you are both You love the hunting but still can't wait to get all dolled up!
Well can't wait to hang out with you 2 again and I hope we can have lunch before you leave Cassi.
Talk so you guys soon!

Love
Emily

SalenaZarb said...

I love you Cassi and Brian!!! Know that my heart aches for you every single day! Please don't hesitate to call if you need anything! All of my love-Salena

p.s. good luck on your interview-they will be getting a great asset to their team!!! Hugs and prayers

nicole said...

Cassi dearest,
My heart totally aches for you. I understand your feelings of maddness and the anger towards God more than you'll ever know. When Kale began having his seizures (4 mos old) I thought my life was over. I never wanted to be a mom to a child w/ an illness. So many people would say "he's lucky to have a mom that's a nurse"
Well those words were not helpful at all, in fact they made it worse. Just as I thought things were getting better and I was finally able to get "used" to the seizures, we got the biggest slap in the face of all times. We got the diagnosis of autism (3 yrs old)
I can still remember very clearly sitting @ CMH when the doctor uttered those words. I thought my world was crashing down. I remember thinking why in the HELL would God do this to us.
It's been close to a year since that news, and I'm finally able to accept the diagnosis and move forward.
I look at you as a much stronger person than I ever was(& prob will ever be) and truly admire your strength. You & Brian have been such amazing examples to me and so many others.
I am really going to miss seeing your smiley face around SFH!

Love, Nicole

Vicki Jensen said...

Cassi,
I don't really know what to say except that I think Elli was a gift from God to everyone that followed her story. Her time here may have been short but she touched so many lives. I am grateful to you for sharing her with us all.
I know your angel is up there watching my little angel down here.

Vicki
mom to Jack
www.babyjackjensen.blogspot.com

Tracy Meats said...

Many continued prayers Cassi and Brian.

Hugs, Tracy Meats - mom to Ian (LCDH, born 4/3/04) and Wyoming State Rep for Cherubs.

Gina said...

Cassi,

You are the strongest mom I know and I am sure Elli is so proud of you.

Gina
Wyatt's mom

Leigh Creekbaum said...

Cassi,
It's been exactly 3 months today since our daughter, Grayton, lost her battle with CDH. She always stays on my mind, as does Elli on yours, and whenever I see a baby I think would be about her age, I just tugs at my heart. As someone put it so poetically, those "tugs" are Grayton putting her arms around me and squeezing.
Grayton was my husband and my first child just like y'all....oh, there are so many similiarities to our stories and I'd love to share Grayton's with you (you can email me at leigh_creekbaum@ml.com) because I definitely want to hear more about Elli. While I "traveled" with you and Brian via your blog, I'm sure there are plenty of things you could tell me about her. Don't feel odd because you tell everyone - I was at the grocery store tonight and the butcher mentioned that last time he'd seen me, I was pregnant. I think he asked me what I had (not sure), but I just preceded to tell him all about Grayton and how she was diagnosed at birth (which is why i didn't set up a blog) with a RCDH and I explained it to him. Can we say "TMI"? I'm sure he thinks I'm crazy...but he didn't seem like it and neither will anyone you share Elli's story with.
You are so right to take it hour by hour. I remember the first couple of weeks after I went back to work (I took off 2 weeks), all I did was read about CDH angels. Because the 6 weeks while she was in the hospital, I hadn't allowed myself to read or google anything about CDH, I caught up on everyone's trials and tribulations with the defect. I'll have to admit, I read more about the Angels than survivors - for some reason it made me feel closer to her knowing something about her Angel playgroup in Heaven.

I'm sorry if I turned this post to being more about me, but I'm just trying to tell you a little about myself and what I'm going through, and, most importantly, I'm here if you want to talk. For me (there I go again), I found the only people who really and truly helped me where other CHERUB or CDH moms be it survivor or non-survivor. Maybe you won't be that way, but if you find yourself wanting to talk, email me and we can exchange numbers.
By the way, I know everyone' probably told you this but it is true ---- it does get better. Before today, I'd gone about 2 weeks without crying....and I'm a VERY emotional person - just ask my husband :)

I am seriously praying for you and here for you if you ever want to share or talk or vent or......

Best,
Leigh
Angel Grayton's mom (RCDH 5/09/08 - 6/22/08

Emily said...

Cassi,
I have 2 ideas! Have you ever thought of being a patient advocate at a hospital, sounds like the perfect job for you. A nurse, a mom, a beautiful person with so much love to give. I was at St. Lukes with my oldest grandson for 4 weeks and the patient advocate was amazing. She made us feel so comfortable. Idea number 2! What about a picture book for children of families who have lost a child to CDH? I am sure this is very confusing and hard for a 2 year old and older who have lost siblings to CDH. There is so much you could do with this. This is coming from someone who always wants to re-write country videos. A singer has such a great song and the video stinks.
Yes its Emily's mom again.

Amy said...

Cassi,

Like a lot of others, I am wiping tears as I write this. My heart aches for you. There is nothing I or anyone else can say or do to make you feel better. It will take time to heal from your loss. I can say that Elli is watching over you and Brian and that she loves you both very much. I continue to pray for both of you.

Blog reader from KS and nurse at CMH South,
Amy S.

Raelyn Marie Turner said...

Cassi,
I have been follwing your blog for some time now, and I am so touched by your amazing spirit and your openess about all you have/are going through. Your posts bring tears to my eyes, and also some laughs! Elli is so lucky to have such an amazing mommy! There are so many other CDH families out there I have never even met...yet I feel such a connection with all of you! The fact is- CDH sucks...and I still get so angry at this defect every time I see my daughters scares. It isn't fair, and we all have to keep praying that hopefully someday there will be enough research to find out what is causing this to happen to these innocent babies and thier parents!

I continue to keep you and your husband in my thoughts and prayers!

Amanda Turner (Raelyn's mommy)
San Antonio, TX

creagray said...

Cassi,

Still thinking of you.

Rachael

mommy to Kaden, Brody and angel Ava said...

Cassi,
First of all I am glad you had fun this weekend...I am sure it was needed. I love the saying you posted. After I get done checking all of my favorite blogs I am going to see if they have that store online. I haven't sent the mail I have for you, but will try to get to it tomorrow.

Life is so confusing...especially when things do not go how we want them to. We too were mad at God when Kaden was born. We didn't understand why this would happen to us or Kaden. And like you, I have stepped back and realized all of the good things that came out of having Kaden and Ava. He has His plan and there is always good when you REALLY look at it. We both wish we could have our angels back in our arms. However, I read something...I think a poem, that says something along the lines of, now that our angels are in Heaven how could we take them away from that. It wasn't in those specific words, but made the same point. Yes, I wouldn't want to take Ava out of Heaven, but man, what I would give just to hold her, kiss her, squeeze her, smell her, and see her again. It is very much bitter/sweet, knowing that Elli and Ava are not in pain anymore, but not having them close to us either.

I wish that we lived closer. I would love to get together with you. My thoughts and prayers are always with you and Brian. If you need anything that I can help you with please let me know.

Always,
Amy

cbgricci said...

We continue to think about you 3 all the time. Take Care.

Love,
Colin, Brandi, & Grace Ricci

gma2be said...

My sweet girl,
Please remember that each one of lifes up and downs make us who we are. With the loss of Elli you have also gained something. A love so deep, memories forever, and compassion that will get you through this difficult time. I too have sad times, I miss Elli so much, (also dream of what gma time with her would have been) but I then think of the time I had with her and wouldn't trade it for anything. The joy she gave me in her short life filled my heart to overflowing. She was truly a gift from God and I am greatful for that. I look at the pics of my family on the livingroom wall with my plac in the middle "We are so Blessed", and how true. Some times its hard to see all our blessings, but they are always there waiting to be appreciated. You, Brian and Elli are some of my most precious blessings, and I am truly thankful to have you.
Love you dearly
mom

FaithCDH said...

Your posts are so beautiful and such a tribute to Elli. Everytime I see a picture of her I am absolutely amazed at her beauty.

Know that we all stand beside you during this time. You are not alone. We are only a few weeks away from Faith's 6 month passing.

Take care of yourself.

Amy Miles
Mommy to ^^Faith Grace^^

Dotty said...

thinking of you, your words are so precious. in tears now.
blessings

CDHi Admin said...

(((((((((((Cassi)))))))))) Elli has been on my heart for the past few weeks. If you need anything, please let me know. That's what CHERUBS and I are here for - to help CDH families. Even though I'm a grieving mom too, I never have the words to say when we lose a cherub... there just are no words. But I am here when / if you need to talk, we all are.

Dawn

The true struggle of a lesbian christian said...

Cassi,
Me and Andrea just wanted to let you know we are thinking about you! Whitney told us she talked to you and about your new job. We wish you nothing but the best there and it sounds like you got a pretty awesome deal there!!
I love reading your post even though I usually end up in tears like the rest! We are continuing to pray for you!
I love your little notes you include to Elli. When I read them I imagen her sitting in a swing in heaven just smiling as she watches you write to her. She sure is lucky to have such a pair of amazing parents!

Liz and Shane said...

We read your posts and admire how strong you are. Your words to Elli are precious and we cry each time. Thinking of you.
Liz and Shane

djbnas said...

Brian, Cassi, and Sweet Angel
I have been following your story since the post "Little Kick Boxer". I have been amazed by your strength. Your Angel taught me more about life in 20 days than I had learned on my own in 18 years. I, like the others, always find myself in tears. Thank you for sharing your story. Please know that you're in my thoguhts, and more important, my prayers.
Deedra

*super dude and super dog* said...

Hi Cassi and Brian,
Just checking in. I still have no words to comfort you or answer why this has to happen. All I can say is that you continue to be in our thoughts and prayers. Take your time in grieving and finding peace and take care of each other.

Rachel Dominguez said...

My heart is just breaking for you. I am sooo sorry you are feeling this way. I cried so hard reading your letter to Elli in this post. I just cant even begin to know how you feel.

You are always in my prayers.

Rachel
(Lee's Summit, MO)