Thursday, February 6, 2014

Just another average night...

 
I have no problems sleeping. Once I am asleep I am out for the count, and I usually wont wake up till the alarm goes off. I am thankful I can stay asleep, but frankly, what I go through to get to sleep...no wonder I stay asleep,
I am emotionally drained.
Just when I lay down to sleep my brain clicks into this gear that is just exhausting.
last night was the worst night yet.
 
This March will make two years since Chloe has gone to heaven...I don't know yet how I feel about that. The newness of Chloe passing away has subsided....but the pain isn't gone, and I know that if it wasn't for Jesus and Travis and my family helping me by listing to me when I needed, I don't know how I wouldn't have made it this far. The pain I felt that night she went to heaven, is the same pain I feel today. Just because two years has passed, it doesn't mean I hurt less. I hurt the same....specially at the end of the day.
 
I'm not sharing this experience because I'm venting, or because I am just so sad... I want to share because maybe it will help me get passed it, and its something I've tried explaining, but cant get the words out right, or plainly have never felt comfortable to try and talk about. But I want to share, get it out there, maybe give perspective to how I feel on a daily basis, and how some grieving mothers may feel.
 ( I am only one person, I don't know how all the mothers to angel feel, I cant say that what I feel is true for all, but I know I am not alone, and I might know someone who feels this way but is more specific to what they are going through... I don't know, but I've learned that with whatever I feel, I have always been able to find one other person who felt what I felt.) 
 
In November of 2012 I started taking medication because I was depressed... I felt as if I didn't have a purpose any more because I didn't have my baby. I don't feel this way any more, but the devil tries to tell me everyday that I have no point because I don't have any living kids. I just say "Jesus loves you, for you. Jesus think about you too" over and over and over until Jesus makes the devil flee. I was on the medication for a few months, and it helped...some...but I didn't want to be dependent on it. I wanted God to help me. I slowly got my self off the meds, and after a few weeks of dizziness and nausea from withdraw, I was off them. The devil will again try and beat me down and tell me I need to be on those anti depressants again, and I just say "NO! Jesus help me because I don't want back on those I refuse to take them" To my knowledge I don't even have any left over anti depressants, and I am thankful for God making them disappear, because I know I had a few left, but they just vanished because I cant recall doing anything with them, and that is all Gods doing.
 
It was in spring I believe of 2013 that is when I got off the medication. I did okay through out the year, the best that I could with support and my normal grieving.
 
From thanksgiving till now as been harder, its entering that time when Chloe's birthday is about to happen, the time she was alive, and the time she went to Heaven. Maybe that's why I did so go from spring of 2013 till thanksgiving, because those went the months she was alive during. Also probably the reason why I started medication during the months she was alive, till after her Angel day.
 
But during all that with all those times, getting to sleep is still the hardest. I know I am now alone on that. Ive read from many mothers who have lost children that night is the worst for not only them, but their spouse and any other children they have also have trouble at night.
 
For the first few year I would say.... I would cry almost every night....some nights it was a waterfall of tears, and other nights it was just a sprinkle of rain. but I hurt the same no matter how much I cried. I think up until Chloe's first birthday, so the first 8 months... during that time span I had about 4 different dreams about Chloe passing away, the dreams were not even the same as what really happened. And one dream of us having another child who also went to heaven. Thank the Lord since her first Birthday, I haven't had that happen.
 
Most Everyone knows I have a cat named Dexter, and a little dog named Bella. I got Bella about 4 months after Chloe became an angel. Bella, just a dog, has truly been a gift from God. I got Bella as a puppy and she has really helped me in my grief and still does. I got Dexter on Memorial day of 2013, another amazing gift from God. Dexter has really helped me because over time me and him have made up our routine and he has learned to love me and trust me.
 
So my nightly routine is snugging Dexter, with Bella laying behind me. I talk to God and talk Dexter, and think about Travis.... and then my brain clicks into Chloe. Most nights I can think about her, and be okay... I let out a few tears, and just let my self miss her and grieve her. That in its self is exhausting. because my brain wants to think "Your only child..." or "what if you next child as EB" and "Will you even have more kids" I have to push those out and think about something else, Because I know that if I don't, my brain will think about the night that she passed away... specially knowing that March will be here soon....its occupied my brain even more because I try and prepare myself for that day. We went to her grave last year, and will do the same this year.
 
Last night my brain did something new. 
 
While I have honestly never had a full blown panic attack before, I can usually tell if something is about happen because my heart starts beat really hard and palpitates, and I just breath slowly to get my heart from feeling like its going to bust out of my chest, and I am fine.
 
Last night my brain triggered a panic attack
Its very uneasy for me to even type this out and know I'm going to post this. I want to address it though, let out, so that way maybe it wont happen because I've confronted it. Also send prayers that it doesn't happen again, because I don't think I could handle that happening all the way until March. Because My brain will calm down the day after March 27. Chloe passed away on March 24, but she was buried on March 27.... My Dads birthday.... but I've been able to handle that because I love my Dad a LOT so I am able to think about him and tease him and tell him how much I love him.
Any ways
 
My brain last night went in to Chloe gear, and I had a few tears over her, and then instantly it seemed like.... I was reliving the night she passed away, just before she passed. My brain remember what seemed like every thought I had then while I was holding her. "How will I tell my Mom and Dad?" and "How I will I be able to live with out her" also "What will happen once she passes away" then the big one "Was that her last breath... Chloe breath....  I don't want her take her last breath."
and then a panic attack happened. It was an awful feeling. I thought my heart was going to explode and I was so dizzy and I couldn't catch my breath. Travis as asleep next to me and woke up and held my hand and told me to take a deep breath.
 
I don't know why that happened. My the devil trying to mess with me? but honestly that's really not smart. Because those "how" questions all became answered. I was able to tell my parents, I just said "Chloe went to be with Jesus now"... hard to say but a simply sweet way to say it. How will I live with out her? The same way I did before, but with a new grief, one day at a time. What will happen once she passes? The UK NICU was amazing. GOD was amazing.
 
Once she passed away the hospital let me do my own thing, I wrapped her in a blanket, took her nasal cannulas off, and got on my knees and prayed. No one rushed me, no one said anything. then they took us to a little room with family and we all got to hold her and me and Travis got to spend time with her and give Chloe her last loving ons. After that, the nurses helped me cut a piece of her hair to keep, We made hand prints and footprints, I got to give her a bath and change her diaper, and dress her up... Everyone gave their last hugs and kisses....they brought in a little white coffin with a yellow blanket with a pillow bottom that I got to put her in... and I looked her.... they decided to let me and Travis carry her down to her morgue for the funeral home to come get.
 
 The Lord planned that out really well.... One of the funeral home directors was at the hospital with his wife who was staying there, and so he was able to take care of her. I still have the yellow blanket. When Chloe took her last breath, She took a big one, and went. I no longer could feel her pulse and I just looked at the nurse, and shook my head to have her come over, She listened for Chloe's heart, and shook her head and said "I'm so sorry.... I have to get the Dr." the Dr only confirmed what we knew. Even though Chloe passed away, that night honestly couldn't have gone better under those circumstances. All the family was there, as well as some Friends, with one of those friends being a Preacher who read from the Bible and Officiated for Chloe's Funeral. We had actually ran into a group of friends hours before Chloe passed away and was there when we got the phone call we needed to be with Chloe ASAP, they followed up and was able to make phone calls for us so that we could spend time with Chloe.  
 
Why my brain made me have a panic attack, I don know, and I don't care.
I'm not going to go medication EVER again. I don't want it, I don't need it
The devil can try and bring me down, but he has to flee in the name of Jesus
Chloe may not be here on Earth but I will see her in heaven
Will I hurt tonight and battle my grief, yes but, Ill call on Jesus and ask him to give Chloe extra sugars for me.  
 
 
Matthew 5:4
Blessed are those who mourn,
for they will be comforted.
 
1 Samuel 1:27
For this child I prayed; and the Lord hath given me my petition which I asked of him:
 
 
Isaiah 40:5
And the glory of the Lord shall be revealed, and all flesh shall see it together: for the mouth of the Lord hath spoken it









 
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Tuesday, July 9, 2013

Vent.

It has been about one year since Travis and I have really started trying for another baby. It has been a rough journey... I honestly feel like I am on my last ounce of trying before I decide to not try any more. I applied for my first job in the state of Kentucky today. It has been a little over two years since I have had a job so I am looking forward to working. I think after this month, if we still haven't conceived a child,  I will just focus all my time on working. I am not one to give up easy, but emotionally... Its just becoming to hard to handle. Watching as others are having children easily, and I sit here and think about Chloe... I just get depressed. Just typing this is making cry. I am happy for those people, and its nothing about them, just makes me want my turn now. I am trying so hard to be patient and wait on the Lord, but I am going to have these days when I just want to cry and cry and cry.
 
Travis also went back to work today after having a whole week off work, and that has really saddened me. We haven't spent a week together like that...since probably November or December.
 
I am tired of feeling this way. I want my joy that comes bundled up.  I look at pictures of Chloe everyday as they are hung up on the walls and I look at her and some days I just get so happy because of her beauty but lately I have been missing her so badly, and the pain makes me hurt all over, and I feel like no understands that. On those days I have no motivation to get out of bed. I feel like, What is the point when I have no child to get up too. I am not strong enough to deal with this Lord.
 
This past week with Travis home I didn't cry at all, and wasn't sad...but when he's at work... it seems like one or two times a week I am here at home alone and crying. I am not "giving up" on trying for a child... never will... I am just stopping the emotional wreck it causing me.
 
Then what if I do get pregnant. we have that chance of having another child with EB, and then my whole pregnancy will be a worry on that. Will this child be born with EB or not? Will I finally make it to a full term pregnancy or will the baby be premature again? Will there be months spent in the NICU again? Will we even be able to bring our child home?  Emotional wreck. 
 
I just want to have a baby... to be a mother... the only thing I have ever wanted to be.  
 
Yes I am Mother ... I feel like I have to be so defensive about this. I have been in conversations that included the words "IF you had kids, you would understand".... and it hurts... and being asked how our baby is doing.. tis the life of a grieving mother.
 
I just needed to vent a little.  
 
 
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Tuesday, April 30, 2013

Loser

So I have been thinking about posting this poem for a while... but just.. wasn't sure. I was thinking about saving it for my book, but then again, I wanted to share it in the present and not later on.
What inspired this was me thinking about how I tell about Chloe. When I get to the point of her story where she passes away, I choose my words carefully. Sometimes its too hard to say "she passed away" or simply "she died". I feel like those word are to mature for such a little child. I like to say "she went to heaven" or "she went to be with Jesus".  Those words seem to be more fragile, soft, and pure like Chloe was. Then I think about how other people may say it.
--I am going to stop for a moment and I just want to say, if you say this phrase, it doesn't offend me, it doesn't bother me. Its just simple something I cant get my self to say. It doesn't feel natural coming out of my mouth and the words again... are just to mature for a little baby. And if you are in someway offended, I am truly sorry it wasn't meant.--
To often I hear "he/she lost their fight to..."
There is just something about that word lost.
I got to thinking about how if you lost to something... that makes you a loser by dictionary definition.
So I thought about like this: Chloe lost her fight to EB. She was on the loosing side. She was a loser. 
I know we all know that two sentences are not true. but what about the first?
So it inspired me to write this poem
 
Am I a Loser?
On the day I was born when you first looked in my eyes you were on top of the world.
When you first held me in your arms and kissed my cheek, you fell in love.
So am I a loser?
Remember when you first told me you loved me while rubbing your belly, or when you first felt me kick, you were glowing.
So am I a loser?
when you first got to feed me you were so proud. And when my little hand grasped around your finger, we made a memory.
So am I a Loser?
Remember how hard we fought and how much we tried. The way you smile like it was all okay while you held back tears. You were so strong.
So am I a Loser?
When you read me the Bible and told me about Jesus, I could feel his arms softly holding me. You seemed so edified because you felt this too.
So am I a Loser?
Remember the night I first met Jesus, you cried so much. You held my little body and prayed just so you could praise the Lord.
Mommy Jesus told me he was proud.
So am I a Loser?
I have my perfect skin to hold my perfect body. Hair that flows while the angels sing to me.
I no longer have to hurt, I no longer have to cry.
So am I a Loser.
I watch you from so high above, But when you see that butterfly I sent that just for you.
There are so many other children here, we laugh and play and tell stories all day.
I am thankful I am here, no more suffering can come, Ill be waiting for you for the battle is finally won.
 
 
 
 
Matthew 19:14-15 
14But Jesus said, Suffer little children and forbid them not, to come unto me: for of such is the kingdom of heaven. 15And he laid his hands on them, and departed thence.
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Tuesday, March 26, 2013

One Year Already

Wow I can't believe that it has already been one year since Chloe went to be with the Lord. It does not feel like it has been that long already. It seems like the older I get the faster time seems so go by.  On Sunday we wanted to go to Chloe's grave and maybe release some balloons, but the weather here was yucky out so we didn't get to go like planed and Travis had to work that night also.  So for me it seemed like the day was already sad and depressing. But we were given a wonderful surprise.   Jessica Davis Thompson  Face-timed with me all the way from Louisiana to watch her, with the team of Tripps Troops doing a balloon release in memory of Chloe. It was so sweet it made me cry.  It made my day getting to watch that. After that I went to church and then hung out with my brother and sister-in-law and niece.    
A couple days ago I was crying and I called my mommy and I was talking to her and all I could think about was how I should have a 1 year old right now. How I should be teaching my daughter how to walk and to talk, and teaching her.  But I had to remember that she is in a better place. She is in the best place she could ever be and tonight I heard some good preaching and the preacher mentioned about Chloe and reminded me that She is a lot better off than I am here on this earth. 

The Lord has really blessed me this past year. He has helped me to be able to grieve in a healthy way and has helped me overcome a lot of emotions, that for a while was really hard to deal with. I had a lot of bitterness and envy in my heart that The Lord came by and took from me, and after that, that was when the healing really began.  but I always feel like I have so much to say until I go to write a blog post.  


Also I am going to announce here that I am currently trying to work on a book about Grieving and The Lord. Its going to be about Chloe, ( of course) and I am going to fully explain in there about my grief, the stages I went through and how the Lord was able to heal my broken heart.  I don't want to make money from this book because thats not what its about for me. I just want to be able to help someone who may be also going through a hard time of grief of losing a baby or child, or anyone for that matter. To many people get angry at God when they lose a loved one instead of thanking him for the time they had with that person, even if it was only a few seconds. 

But that is all for now. Love you and thank you for your time to read this! 







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Wednesday, December 5, 2012

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



















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Wednesday, October 31, 2012

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






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Friday, October 26, 2012

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

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