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