First Birthday

Well Chloe turned One year old yesterday... wow. Already one full year since Chloe entered in the world! I feel like it hasn't been that long. so much has changed since December 4th 2011. we were prepared  to bring home our newborn baby girl after a few short weeks in the NICU because of being 6 weeks premature and after she had surgery for her stomach... but we didn't know God had something else in mind. As I reflect on the past year.... the changes that really stuck out at me... and these changes will be the same things I will think about when the new year rolls around:
we have moved to our very own place
Travis was hired on full time at his factory job
our Daughter was born

Our Daughter went to be with Jesus
I found comfort in the Lord for the first time since being a child

I became a Holiness woman

I've learned to cook new things

and most important
GOD GAVE US EACH DAY

Chloe's birthday was amazing! I had a dinner with friends and family. I cooked/fried ( with the help of my wonderful sister in law Tamara ) small bite sized chicken for the very first time. I did it all by memory of watching my mother make it while we visited my family over thanksgiving. Travis sadly had to work but plenty of left overs were saved for him! Getting to be around everyone was so comforting... It meant the world to me to have them over to chat with and to just sit there and watch others converse. On the lonely nights I have, I will always think of Chloe's birthday and how every came together because of her and to be there for me and Travis. I was reminded of the people who care. After the long evening I went on facebook. I hadn't been on facebook most of the day, and reading all the comments and post about Chloe.... It was hard to hold back tears that came to my eyes. I needed the good stern reminder that I am NOT alone with this. There is always someone who will be there and willing to talk to me when I need them.

The mind can be your worst enemy at times and the devil gets in there and can make you think some stupid stuff sometimes. All I can do is ask God to help me because when I start to think about Chloe I feel like I am all alone and there isn't any one there. I love the reminders I get and I do need tho's reminders that Its okay to be sad and cry and that there is always someone who will be my shoulder either in person or over the phone or online. and at times I forget that I need to take advantage of that. For me it is so difficult because I have it stuck that I need to be strong and I can't handle to cry around anyone its hard to even cry around Travis.

I have so many people tell me that I am strong and courageous and brave.... I love hearing that and I thank each and every single person who has ever gave me a compliment like that! But... Ill let you in on a little secret ... my favorite thing to be called isn't strong or any of those words.... my favorite thing to be called is a Mother, Mom, Mommy, Momma... I love seeing comments with those words! I am a Mommy! I can't wait to to heaven and see Chloe waiting for me and when she sees me I will get to hear her for the very time yell out "MOMMY!" I can't wait for that day! 

It is a couple hours past Chloe's Birthday and everyone left a while ago and *most* of my apartment is picked up... as I write to you all I can't help but to feel bittersweet. I am so happy I made it through the day and I am so happy for everyone who came over..... I'm really overjoyed!!! but I am sad because This isnt how I ever imagined Chloe's first birthday would go. I couldn't wait to see her eat her first birthday cake and open her presents. To see her eyes when she first taste the frosting on the cake and hear that first rip of wrapping and looking too see the colors of a new toy. Then.... I can't help but wonder what Chloe's birthday was like in Heaven! I'm sure it was beautiful! I can imagine she probably had butterflies everywhere and I think would have had baby pink roses every also because those would be her favorite just like Mommy. My sweet angel... now she is the one who is strong. She was perfect in every way  and she is living in the most perfect place and she is probably perfectly happy.

One thing else I want to add.... I love thinking about this when ever I am sad...
I think about Mary up in Heaven... I love to think about her playing with the babies and children and about her playing with Chloe. I love to think about her holding Chloe and giving her hugs and them smiling at each other. It is something I find so comforting.

I would love to stay up and write so much more but I really don't want to over do it, and my eyes are heavy and tired from all of the excitement of the day.  

Bless you all!

1 Samuel 1:27

For this Child I prayed; and the Lord hath given me my petition which I asked of him

Standstill

Me and Travis have decided to stop trying for another baby. There are lots of people who try for years, but me and Travis... we just can't. It is so emotionally hard. I was 14 days late, and we were unsuccessful.  It is emotionally draining. I feel like I haven't stopped crying since last night.  I am so emotionally drained.  Chloe passing away took a lot from me, and with each unsuccessful month it feels like a little more is being took. I guess I'm just having a time of sadness/depression, I don't know. When you are trying to get pregnant it seems like everyone else is getting pregnant besides you, and I feel like if we stop maybe some of that anxiety will go away, this anxiety that I feel like no one understands. 

In  a previous post I wrote about how I feel like I'm stuck in the house all time, I still am. And I think it is making things worse. I feel like a burden when I want to go out and do something. I don't like relying on other people so much and if I rely on Travis then I'm taking away from his sleep for work. I just feel like no one understands.  I miss holding my baby in my arms.  I miss seeing her big blue eyes and feeling her little 41/2 pound, body on my chest while I held her. That was her favorite place to be. I miss how whenever I talked to her, she would stare right at me, and when I stopped she would look around for me. I felt like a mother. All I want to be is a mother.  

The only person who truly  understands is the Lord

Here is a good question,

How do you move forward when you feel like you're not moving at all.

Psalm 31:24

Be of good courage, and he shall strengthen your heart, all ye that hope in the Lord

Baby Easton

In honor of EB awareness week, I would like to share Baby Easton with you.

Easton is such a beautiful little boy. He has been through so much in such a short amount a time. He has endured more pain than the average person, and yet he can open his eyes and can still Give his mom a smile. What a sweet boy

Here is Eastons story-Wrote by his family

( Taken from http://www.facebook.com/SupportBabyEastonFriedel ) 

Baby Easton was born August 23rd, 2012 at Auburn Memorial Hospital and immediately his parents knew something was wrong. He was missing skin on most of his limbs, covered in scary, deep red, open wounds. He came out screaming violently, his weak five-pound, fifteen-ounce body shaking because of the unbearable pain. Auburn Memorial hospital had never seen a case like this so he was transferred to Crouse, where the doctor had only seen 2 in his entire career. Baby Easton was unable to even take a pacifier for comfort because the friction of it against his skin left his lips blistered immediately...so they had to put in a feeding tube and his mom will have to pump instead of nursing him. His pain was eventually controlled with a combination of morphine and Tylenol, and he is on antibiotics to try and prevent infection from his many open wounds. He is getting new blisters from being cleaned after he goes potty...and needs to be medicated to tolerate the pain of cleaning him up. Changing his bandages is also extremely painful and calls for more morphine   The drs are talking about moving him from NY to Cincinnati Children's hospital.  He is the worst case they have ever seen.

Easton has three older brothers, Logan, Carter, and Blake, and has two loving parents, Jared and Danielle. One cannot even begin to imagine what the parents must be going through. The shock of his diagnosis; the uncertainty of what his future holds; the heart wrenching pain and feeling of helplessness at seeing their newborn baby hurting and not being able to hold him, nurse him, comfort him, or take away his pain.

Easton's father works in a factory and doesn't make much over minimum wage. The factory he works at will be closing within a year and he will be without work unless he transfers with the company across the country from NY to OK. He is taking a week or two off to help his wife as they transition home and learn to care for baby Easton and their 3 other boys. His mom will not be able to work and her days will be dedicated to loving Easton and his 3 brothers, and the arduous and extensive care Easton's illness will require.

His parents need to concentrate on caring for their fragile baby. I pray we can help relieve some of this financial burden so their sweet boy can have the medical supplies he needs to help ease that pain and try to keep his blistering under control, healing, and uninfected as much as possible.

Easton has EB Simplex Dowling Meara 

 Information From DEBRA website (www.DebRA.org):

EBS-DM is a generalized form of EB simplex. This type of EB is probably the most severe form of EB Simplex.

Infants are often born with widespread grouping of blisters on the face, trunk and limbs. Blisters on hands and feet often eventually cause confluent keratoderma (thickening of the skin). In many cases these calluses form complete thickening of the palms and soles. If the thickening is severe enough it may limit the range of motion of a joint. In such cases, consultation from a surgeon may be necessary to determine the best course of treatment.

Heat may exacerbate blistering. Milia (tiny cysts on skin) may be present after blisters have healed. Nail thickening and discoloration is a common feature.

Blistering in Dowling Meara EBS can involve organs including the oral cavity, gastrointestinal tract and rarely, the upper respiratory tree.

Electron microscopy shows clumps of keratin filaments, which are not seen in other forms of EB simplex.

Mutations are usually in the genes encoding K5 or K14.

Since EBS-DM is the most severe form of EBS, the widespread blistering may lead to death in infancy. However, blistering tends to become smaller and less problematic for most patients as they grow older.

Since EB varies in severity these manifestations may or may not be experienced by the individual affected.

Baby Easton

Chloe Shirts!

I am going to start selling Chloe Shirts again! I have had lots of people asking about them so I think now is a good time to start selling them again! 

Last time we sold 75 shirts! I want to sell at least 50 shirts but I would love to sell more than 75! therefore, I am going to take a PRE-ORDERS on Chloe's Shirts. This will NOT cost you anything until the official sale starts.
Send me an Email at JEBChloe@Gmail.com with how many shirts you would like!
 The shirts will cost $23 for sizes SMALL--XLARGE  and about $25 for sizes 2XL-4XL
that include shipping.

For Local orders I will not charge you shipping if you ordered from me or a family member.

100% of the funds will go to an EB Charity. Our last sale went to benefit the P.U.C.K fund. I am not sure if I want to give this round of proceeds to the P.U.C.K fund again or if we will pick out a new EB Charity to benefit! I will tell you as soon as a decision is made!

I still have A LOT to do with the shirts, so prices and sizes, are subject to change.

  

More Info to come.

 

I never wanted this day to come.

Hello Everyone, Sorry it has been so long since an update, but I have wrote ideas down, typed unpublished post, and talked to my self about what I should say all night long, and honestly, I think I was holding out for this Day. (Sept 24th)

Before I get heavily into this, I want to first say, this is going to be a lengthy post, I already know that it will be. I like to ramble one about different things and also because it has been entirely to long since I have updated.

So I'll start off with the good things!

About three weeks ago, me and Travis moved into our own Apartment! I am so thankful! Moving has been something I have been praying for so long about and have wanted so much! The Lord made us available to move the the perfect time. When I moved to Kentucky I moved in with Travis and his Mom Sandy. I'm glad for that because my Mommy was all the way in Indiana, and my "move" to Kentucky was a "spur of the moment" kind of thing. I came to KY expecting to only stay for about 2 weeks, to meet Travis in person and visit with my brother, sister-in-law and nieces. After I met Travis, I didn't want to leave, the thought of leaving him, just made me hurt, and feel depressed, so we got the bright Idea, LETS GET MARRIED!  ANYWAYS, about two months after we got married, we found out I was pregnant! At the time Travis was having hard time finding a job, and I think it was a blessing because I was so sick. Once he started working again not very long after that, it was so nice to have his Mom around and to get to know her... well before we knew it, I was going into labor before I was even 30 weeks, so I was put on bed rest, and Its another reason I was happy to have his Mom there, because I knew if something happened, She would be there ( if she didn't have to work that night ). Going on, Once Chloe was born, She was a lot of support for us, while we dealt with the NICU, being away from home and everything...after 3 months and 20 days, the past 6 months we have been healing and we just couldn't afford our own place yet. In August Travis got hired on full time and about 2 weeks later he we were offered our own apartment in the next building. So we have been in our new apartment for almost a month now and it has been wonderful. I am happy that it is not far from Sandy. Its been really hard since I moved to Kentucky not to have my Mom around. My whole life I lived in the same house with her, and I remember when ever I needed her, I would say "MOM BACK PORCH NOW! I NEED TO VENT!"  We would always sit in the back porch because it was more private, and they way it was set up, with a window, you could always see if someone was coming into the area, or leaving. anyways, I really miss her. I know that I can call her anytime I need too, But there isn't anything like having your Mommy around to hug. That I why I am thankful My mother in law Sandy is still near by.

For example a couple days ago, Me and Travis got inside the storage building. He was getting things out and I was just looking at all the the baby things we had in there. It seemed like a never ending supply of baby girl clothes! Well I opened up a box that  I though was only going to have some winter clothes in it, and when I opened it there was a few items of Chloe's. I picked up a few items and I found the first skirt Chloe ever wore. It may not seem like much, but it is really important to me, because I only wear skirts. The skirt is a preemie size, and I remember the day I put it on her, I matched it with a blue onesie and I had to fit her broviac line inside the skirt also. I remember after she was dressed.... this little preemie skirt was loose on her! She was so tiny! I held the skirt close to me, and my emotions just about had, Thankfully Sandy lives right there, and I was able to just walk over to her apartment, and cry my eyes out on her shoulders, and she cried with me. I am Thankful I have a good mother-in-law! It seems a stereotype that your not supposed to like your mother-in-law, but I love mine, and Travis loves his!

Another good thing is that I found Chloe's first bottle! I have been looking for it for months now so I could add it to her box, and I thought I lost it.I found it while me and Travis was in the storage building, along with a few other outfits and onesies, and hats she wore. It was so wonderful! I am so happy I found her bottle!

Okay for the best news of all ( have to save the best for last right! )
WE ARE GETTING CHLOE A TOMBSTONE!!!!
Thanks to The butterfly fund and Amy Childers Photography, They helped raise donations of $2,000  for us to get Chloe a tombstone! The Butterfly fund put up on facebook, and then Amy got a hold of it, and helped put the word out! I am so thankful to each and every single person that made a donation! Me and Travis have been saving our change to be able to get Chloe a tombstone, and honestly... I thought the day wouldn't come for a very long time. I can't believe that it is going to be a reality for us before we know it!
We still need to make an appointment with the funeral home to look at what they can offer, and my sister in laws went to the local festival, and there was a booth set up marketing tombstones and they got information for me, and talked to them and asked questions. So I have some pamphlets I need to read, and research!

I am so happy to be able to get Chloe a tombstone. When I found out about all the donations that were raised I cried! I was so happy. The days following after hearing about this is when my emotions started to really set in. I started thinking about getting her a tombstone, and it hit me, I shouldn't be picking out my daughters tombstone! She should be picking out mine! I should be picking out dresses for her to wear to church and bows for her hair!
A PARENT SHOULD NOT PICK OUT THEIR CHILD'S TOMBSTONE!
It just makes me extremely sad. I DON'T want to see her name like that. I really don't. It was so hard seeing her name in the newspaper for her obituary, and even then, the only time I should see her name in a news paper is for an achievement or something! I just get so.... depressed thinking about it.... but I am happy to be able to finally honor her! to give her something she deserves!
Also I have been thinking a lot about her birthday coming up in December.... Her first birthday.... I just don't want to face it. I want to help my baby blow out her candle on her first birthday.  I just can;t believe that it has almost been a year since she was born. This year has flown by.

I have been really depressed the past few days... I want to do things, but at the same time I just want to sleep. I don't know why I have been so depressed, this is honestly the most depressed I have been since Chloe passed away. I want to be strong for my family and to show them that If I can handle this, than you can to. Also I feel like I have to be strong for Travis, He is different from me, so he has been handling his grief differently, and I just want to be strong for him so when he needs me, I can be there for him. His job is also making things that much harder also. He works 12 hours a night, 7 days a week, and a day off here and there, and I feel like we have no marriage because we hardly get any time to be with each other. Its so hard to explain just how I really feel, and its extremely hard to talk to anyone about it because its so personal and its not easy. I can't just think "oh it will be okay" because most of the time, I feel like it will never be okay. A part of me isn't with me, and everybody is different I don't grieve like everyone else. I've never had to grieve before in my life. I don't have my license yet, and our only vehicle is Travis' truck. So I am always home, I can't decided I want to do something and just get up and grab my keys and go, and I know that in time I will be able to do that, but it has taken a toll on me. I can't handle being home all time, and cleaning every single day. I know I am a wife, but after a couple weeks, it makes you go insane, and it's something no one will understand fully because I am me, and I am my own person. I am at home all the time, and your mind is your worst enemy. There is so much about Chloe that I think about everyday that just breaks me down. I think about how I will never get to hear her talk, to hear her say "Mama" or "Dada", I won't ever be able to hear her tell me she loves me. I won't ever see her take her first steps, eat with a fork, go to school, and so on and so on.  And I am home all day long, and my emotions build up until they blow over. 



Thats not the only thing that has been troubling me. Me and Travis have been trying for another baby for about 5 months now, with no luck. I so badly want to be a mother, It is in my DNA to be a mother, I was made to be a mother. It is so hard to look a pregnant woman or hear about another woman finding out she is pregnant, with out being a little hurt. and It is hurt that I feel because It makes me want to hold my baby girl, it makes me want to be pregnant again, and it's always a reminder of something that I want so dearly in my life. Its a strange emotion that only a few people will understand unless they have lost a child, had a miscarriage  or can't have children. I have talked to a couple friends who have lost their children because of EB or miscarriage, and they have or is still experiencing the same emotion.  I know I may get judged on that but, its something that I have to overcome, and I someday will, I pray that I can one day way up and feel differently  but until that day, it is something I have to cope with and figure out. 


I am sorry this blog post have taken so long to get up, I just had to find the right words to use, and sometimes when I would start blogging I would end up crying and I stopped after that. My emotions are what they are and they are and I feel like when I blog I think about the people who may be reading this but I'm tired of that I want to let out how I feel without fearing that someone is going to talk about me. My Life is in a rut, and I want to let out how I feel to try and move forward, I need to be honest about my emotions.

I will one day be okay.


Keep us in your prayers.


Psalm 37:5
Commit thy way unto the Lord; Trust also in him; And he shall bring it to pass

Chloe's first bottle

Chloe in the little yellow skirt I recently found

I found this pink dress also. I love this picture.

One of my favorite pictures

Travis prepped for my C-section 

after I had my C-section, in recovery from my Epidural and surgery 

My Bella

SO something exciting happened for us! We got a new little addition to our little family. Her name is Bella! She is a Chihuahua-Shih tzu mix, only 7 weeks old!

I fell in love with her the first time I saw her and I KNEW I had to have her, I talked to Travis about her, and the next day, by the Lords blessing, I was able to get her!

I think she is really going to help me with my grieving. I have all this love I need to out pour on my Baby Chloe, but she isn't here with me, so with Bella, I can take that love I have built up inside, and give it to her. Until our next Baby, My little Bella is going to be my baby to love on.

She is doing very good with her training, Im pretty happy with where she is at right now, She is still having lots of accidents, but she is getting better, slowly but surely. We love her so much. She is still so little and shouldn't get too much bigger! She is loving her toys to chew and she LOVES to snuggle! I am so happy and so thankful I have her!!! I love her! 

I need a little Heaven.

 

Unpublished

I've been wanting to post a blog update for a while, and I type something out but I can't seem to push that "publish" button. So I'm going to try and tell what my unpublished post have been about.

My first unpliblished post was about all the things I would give...
I would give everything that I have, The clothes off my back, too my last crumb of food. I would give everything to be able to have my sweet baby girl back.... but when I think like that... even tho it seems so humbling... Its selfsish. I don't want to take her away from Jesus, and heaven. I don't want to take her away from all the other EB children, and all the children who are up there, I don't want to take her away from her cousin Timothy, or take her away from all those beautiful angels. I don't want her to have to deal with EB, blistering, skin tearing, a chance of skin cancer, G-tubes, more blood transfusions, I don't want to watch her be old enough to under stand that she may not live another day.

Another unpublished post was about all the anxiety I have had the past week maybe two weeks. I sit in bed trying to go to sleep little things make me think back to December 2011 though march 2012 and my heart starts racing and I get this overwhelming feeling comes over me. During those months, when I would get that feeling, all I had to do was pick up a phone and call the nurses and I would know she is doing okay.
I'm thankful for my friend I met a church Jeanette, We started talking about the Lord and with talking about him, somehow I mentioned Chloe, and started talking about her and I told her about this feeling and she gave me a good reminder that I call on the Lord any time also, and I know Chloe is okay. And I thought more about that and the Lord is there for me, and time, day or night, and I know that Chloe is resting safly in the hands of the Lord and am so thankful that the Lord has helped with grieving for the Loss of Chloe.

I have good days and bad days. and Today started off as a bad day. I woke up and I was so sleepy still and  I was missing Travis because he had just left for work. I laid in bed for a couple minutes grabbed my laptop so  I could listen to some encouaraging music, and I started thinking about Chloe, then it made me want to watch her awareness video, and I just lost it after that. I started crying. and my heart felt so heavy. I wanted to crawl under my covers, stay in  my pajamas, and never come out. I honestly wanted to stay there and cry all day and be depressed. And if you know me, I am far from letting depression get the best of me. Thankfully my mother in law walked in and first asked "You okay" and I just laid there and shook my head no.. then she asked if i was having a bad day and I shook my head yes... and she said something about if I wanted to go to the store, and she was going to get dressed.... and that was my motivation. Getting up and getting out. And I'm glad I did. I was able to go to the Chiropractor/physical therapy and he reminded me that emotional stress is the worst thing on your body.

So thats how I have been. I try so hard to be strong for my family, I guess to show "Hey I'm Chloe's Mommy, look at how good I am doing, If I can do it, so can you!" But at times I am not strong, I am going to have my weak days. But I know that the Lord will help me though it all. And I haven't cried like I did this morning in so long. So it felt so good to let it out.

Psalm 22:19

But you, O LORD, be not far off; O my Strength, come quickly to help me.

Psalm 119:28
My soul is weary with sorrow; strengthen me according to your word.


Matthew 19:14
But Jesus said, Suffer little children, and forbid them not, to come unto me: for of such is the kingdom of heaven

Missing you

On the 4th of this month, Chloe would have turned 6 months old. It is extreamly hard to belive that it has been 6 months since I had her, since I first saw her little face and gave her, her first kiss. I have days where I think about Chloe and all I can do is smile and laugh about how adorable she was and how she had a personality all her own. I love thinking and laughing about how because she had such big eyes she would look so worried, it was adorbale, We would have her sitting slightly up and she would sit there and fold her hands together and look around.  She was so grown up.

But then there are other days... Days like today... where I started to think about her, and all I could do was cry. and I have to take a few deep breaths and gain composer again. I feel so empty at times without her... Its hard to explain... I had a baby, a beautiful baby girl. And on her 6th month birthday, all I could think about was all the smiles I'm missing, hearing her laugh, talk, walk...and grow up.... It makes me so sad.
But

When I get to go to heaven, where there is no time, and I get to spend eternity with all her giggles and smiles and talking and pure love. I can't wait for that day. Until then I cry out to Jesus and ask for strength. I feel so tired sometimes. I know that other who are going through the same as me will be able to understand this. I've read others talking about the same feeling of pure exhaustion of grieving.

On the 4th I also went through her box of things. It was hard with a few items, but it helped a lot. I feel like my memory of her is getting better... I dunno how to explain it, maybe others understand what I mean... It just seems like when I think about her, my memories are more vivid and I remember a lot more of the days I had with her. Its a blessing I will say. I am thankful for that. Its helped my faith.

2 Peter 3:8
But, beloved, be not ignorant of this one thing, that one day is with the Lord as a thousand years, and a thousand years as one day.

John 14:26

But the Comforter, which is the Holy Ghost, whom the Father will send in my name, he shall teach you all things, and bring all things to your remembrance, whatsoever I have said unto you.

Her signs and notes

outfit I dressed her in after she passed away

prints after she passed away

prayer clothes

Chloe's memory box. Laptop ontop to show size

Made by: Kathy's Glitter Kreations, From Lewis and Debbie

bracelets and measuring tape that was used to measure her belly

From the small casket that the hospital gave us. 

I made this in Memory of Chloe. Butterflies are made from her funeral memorials

lock of her hair. It fell out of the ribbon, but thats okay

This has a very special story.