October

October is pregnancy and infant loss awareness month. This month mean so much to me because not only is it awareness for that, but the last week of October is EB awareness week.

 

I want to talk about pregnancy and infant loss.

 

When it comes to infant loss, everyone knows you are pregnant and in most cases, everyone is expecting a healthy baby to arrive. When the baby is born, the baby could be as expected, completely healthy, or the baby could have more complications. There are many reasons as to way a baby may pass away, such as: SIDS, Genetic disease or disorders, infections, heart defects, prematurity, car accidents, and even shaken baby syndrome, to name a few. No matter the reason, losing a child is a very difficult process to go through. one day you seem completely fine, then suddenly you are crying because you saw baby clothing while getting groceries at the store. There are lots of triggers to a bereaved mother that no one understand besides a fellow bereaved mother. Those around the bereaved who do not understand and make the mother feel as if she is forced to do things she is not ready for will only make her grief and depression worse. Take time to listen to the mother, there are silent things she endures every day that she may not discuses so she can appear strong, so she can try and be happy, so she can move foreword and not dwell.  What ever her reason may be take her feelings into consideration. If talk of babies make her uncomfortable, try not to bring up the discussion of babies, as this will only make her focus more on her own baby. Go at Mommy's pace. When she feels ready to talk about babies, then let her speak and get the emotions out. Letting Mommy talk is the best thing for her. When a bereaved mother talks about her loss, its much more then her just sharing her emotions, she is acting as a voice for the baby, and not letting him go forgotten. For a bereaved mother, talking is so more complex then what anyone understands. Its not a conversation that will be forgotten later that day. The conversation is her being the voice for her baby, she is letting emotions go, she is healing, and also experiencing new emotions. She will likely reflect on how the conversation went later on, so be carful on your words, as something you say innocently, she may find offensive, and that may be part of the grief process.

 

Pregnancy loss is a silent grief that not many people will know the mother is experiencing. I never knew the heart ache of a miscarriage until this week. I got to positive pregnancy test then a few days later miscarried the baby. I was 4 weeks along. While still very early I do not know what it would be like to lose a baby that is further along, but because of losing Chloe, and this early miscarriage, I have an idea of what it may be like.  when you get to hear the baby's heart beating for the very first time, it becomes so real, and being able to see the baby on the ultra sound, you see this little being growing inside you. Its the most amazing thing in the world in my opinion. Most people will tell their immediate family about the loss, some do not especially if the woman has a history of miscarriages she may not want to get the families hopes up until she knows the baby is thriving. if she miscarries, she is left with the empty feeling of loss, and what could have been. She can share that grief with her family, but if she choose not to tell anyone then she is left with this silent sorrow that no one knows she going through. When I saw that pregnancy test say I was pregnant I wanted to tell all of my friends and outside family that I was expecting on Chloe's birthday. that would have put me at ten weeks along if I counted correctly. Even though I miscarried very early, what if I had carried the baby till 9 weeks and was getting ready to announce the pregnancy. With all the support that surrounds me, I may not have even been able to mention the pregnancy publicly as compared to it being very early. I would have been alone, and without the support of my EB community family, and my distance friends. While everyone can send me messages or talk to me over the phone or in person, I may seem like I am happy and getting along just fine, but deep inside I am hurting and grieving a loss of a small little life. 

 

You could walk into a room and see 20 women smiling, they could look like they have not a care in the world, but statistically 5 of those women, have had a pregnancy or infant loss. You may not see it on their face, they may not show any emotion related to grief. They hide it very well, but inside their heart is grieving a life that you may never knew about.  One in four women have a pregnancy or infant loss I am one in four. If I take a look at Me compared to my in laws (not counting the one who is currently pregnant) In us four woman I am the one. I am the one who has had the infant loss. It isn't no ones fault that this is happened to me. It is not the statics fault this happened to me.

I believe that  God as a plan for all of us, even the little babies who go to heaven. We may not see it or understand it right now, but if we live right and serve the lord like we are to, we will one day be able to know that reason. I like to think that Chloe's reason of being here then going back to heaven was to get me and my husband to give our life to the Lord. She motived us to pray and go to church. She has helped give us a reason to strive for heaven even more now so that we can see her one day. 

The first few months of a loss, everything seems hopeless, and even years after, if another loss is experience things may seem even more hopeless, but we have to remain strong and keep our faith in the Lord strong so we can heal, and one day when Gods timing is perfect, we will find our hope when God sends a little healthy miracle.

 

 

Psalm 113:9

⁹ He maketh the barren woman to keep house, and to be a joyful mother of children. Praise ye the Lord.

 

 

Luke 23:29

²⁹ For, behold, the days are coming, in the which they shall say, Blessed are the barren, and the wombs that never bare, and the paps which never gave suck.

 

 

Genesis 25:21

²¹ And Isaac intreated the Lord for his wife, because she was barren: and the Lord was intreated of him, and Rebekah his wife conceived

 

(barren=infertile)

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