It seems strange to feel at peace with all that's going on in my world. But i have found a fragment of it, even in the chaos. I know that the Lord is with my little family, even when i feel all alone, I'm not. Watching my belly move as Hope wiggles made me realize something today. Her brain is only need to make her physical body function. It controls physical movements and thoughts. She doesn't need it inside me. Her physical world is controlled by my body connected to hers right now. All function goes through me, she has no need of the pieces of her that are missing, she is safe.
Now don't get me wrong, that doesn't mean she's just laying in there, because i can tell you for a fact she's not! We even have an ultrasound picture of her sticking her tongue out! Her spirit is what most prominent with her right now. I am so blessed to be carrying a child with a spirit as brave and strong and special as this little girl. I carry right now, not only my spirit, which is bruised and battered from this world, but hers as well, that is untainted and whole. Without her strength, added to my weakness, and the arm of the Lord to lean on, I'm certain I wouldn't be able to walk this path.
I can see that while I have been grieving her death, i should have been celebrating her life, just as i did with all my girls. She may not make a huge mark on the world, like i hope her sisters do. Her make will be important just the same.
Tuesday, September 16, 2014
Thursday, September 11, 2014
today
Mary kisses my belly everyday when she leaves for school, and just about anytime she is near me. She kisses her little sister that she won't get to later. It breaks my heart, and makes me so happy at the same time. She loves this baby, unconditionally, knowing that she won't get to stay and yet praying every night that the Lord with make Hope's brain better so she can live with us.
Last night, a woman from the Intermountain Organ Donation came to talk with us. It was one of the hardest things I have ever done. Ranks up there with talking to the mourtuary. How do you make the decision to let a team of doctors cut your baby open and take their organs? It's grusome and morbid. But. What if it saves another mother from having to talk to the moutuary? Having to deciede weither to bury her baby, or have her cremated? No mother should ever have to live through the lose of a baby. It kills a piece of you, one that nothing can bring back.
I love Hope, with all my heart, and I wonder somedays if this is God's way of showing me I can have emotions. I've hidden them, or not felt them for so long, part of my own mental illness probably. I feel now. I feel such extremes that I think i will tear in to a million little fragments.
I am constantly in awe of the people who are willing to walk this path with me. Who don't care that I'm a mess and prone to tears at the stangest things. Who will let me laugh when i need to, talk when I have to, and cry when i must. Those people who have given money to help us, who have no idea that some days, that's what has put gas in the car or bought food for the girls. The financial strain is killing us, along with all the emotional and physical crap added on.
The end seems so far away, but is coming too fast for me. Her birthday is the day she will die. The end only brings more pain.
Last night, a woman from the Intermountain Organ Donation came to talk with us. It was one of the hardest things I have ever done. Ranks up there with talking to the mourtuary. How do you make the decision to let a team of doctors cut your baby open and take their organs? It's grusome and morbid. But. What if it saves another mother from having to talk to the moutuary? Having to deciede weither to bury her baby, or have her cremated? No mother should ever have to live through the lose of a baby. It kills a piece of you, one that nothing can bring back.
I love Hope, with all my heart, and I wonder somedays if this is God's way of showing me I can have emotions. I've hidden them, or not felt them for so long, part of my own mental illness probably. I feel now. I feel such extremes that I think i will tear in to a million little fragments.
I am constantly in awe of the people who are willing to walk this path with me. Who don't care that I'm a mess and prone to tears at the stangest things. Who will let me laugh when i need to, talk when I have to, and cry when i must. Those people who have given money to help us, who have no idea that some days, that's what has put gas in the car or bought food for the girls. The financial strain is killing us, along with all the emotional and physical crap added on.
The end seems so far away, but is coming too fast for me. Her birthday is the day she will die. The end only brings more pain.
Wednesday, September 3, 2014
No crib
Lilly wants to know when we will set up Hope's crib. It's a very simple question from a loving big sister, and it tears my heart into a million pieces. Her's is the simple belief that this baby growing inside mommy will be coming home to live with us. I try to tell her, and her bigger sister to, that Hope will not be strong enough to come home, that her birth defect will mean that she will only live a very short while, all of it in a hospital. That even though we can feel her kicking and squirming and rolling around inside, once she is born, she will go home to heaven and wait for us to get there.
It's harder this time, explaining to them the death of this baby. The one we lost last year they never saw on the ultrasound screen, never felt move. One day mommy and daddy said a new baby was coming, and shortly after, the baby had died and gone to Jesus. They accepted it, with sadness but knowing that the baby was fine and Jesus was baby sitting until we could get there.
They have seen Hope, felt her move, they read her stories and have a list of things they want to do with her. Her death is something incomprehensible to them, but that's only fair as it is to me too.
Mary knows that Heavenly Father answers prayers, knows with all the faith of an innocent 6 year old heart. She prays daily for Hope's brain to be healed so she can come home. While I know that God is a God of miracles, where do i place my faith? There is no earthly cure or treatment for Anencephaly. It is always fatal. Only a divine miracle can save my baby, but if it's not in his plans, then there is no amount of prayers that can change that. Only prayers for strength to carry on, and try to breath.
There will be no crib set up at our house, but just maybe, we can get the bassinet out.....
It's harder this time, explaining to them the death of this baby. The one we lost last year they never saw on the ultrasound screen, never felt move. One day mommy and daddy said a new baby was coming, and shortly after, the baby had died and gone to Jesus. They accepted it, with sadness but knowing that the baby was fine and Jesus was baby sitting until we could get there.
They have seen Hope, felt her move, they read her stories and have a list of things they want to do with her. Her death is something incomprehensible to them, but that's only fair as it is to me too.
Mary knows that Heavenly Father answers prayers, knows with all the faith of an innocent 6 year old heart. She prays daily for Hope's brain to be healed so she can come home. While I know that God is a God of miracles, where do i place my faith? There is no earthly cure or treatment for Anencephaly. It is always fatal. Only a divine miracle can save my baby, but if it's not in his plans, then there is no amount of prayers that can change that. Only prayers for strength to carry on, and try to breath.
There will be no crib set up at our house, but just maybe, we can get the bassinet out.....
Saturday, August 16, 2014
Balloons and Hope
It all seems so surreal, this making memories with my unborn daughter. Today we went on an adventure to Nordic Valley to a balloon festival. What a beautiful setting, and it was so nice to hear Mary and Lilly giggling uncontrollably. it's been so long. And I was out, in the sunshine, surrounded by people, and didn't break. I meet a woman who told me Hope stands for H-hope O-overcomes P-pain E-ends. So many ways to put the emphasis, but still give a small ray of peace to my broken soul.
Ellie will be moved Monday. As she is no longer in my care, but is a ward of the foster system, I won't be able to go with her, or see her off. I don't know when i'll get to see her again. It's up to her guardian ad lid-em, and case worker. I have been branded a horrible mother and had a judge take away my baby. all because i can't get her the help she needs. If she had cancer, or and addiction, or anything else, i could. But my baby is Mentally Ill. and no insurance will cover treatment. after all, it's all in her head right? it's ripping me apart, all the murk that is clouding the waters. She is telling stories of sexual abuse, pointing fingers at the one person who would never hurt her, and ripping our family to shreds in the mean time. I know that something must have happened to my little one, i just don't know who did it. all i have done her whole life is try to help her be safe in her own mind. maybe now, away from me, she can.
One daughter lost to a mental illness, one i'm loosing to a brain defect. How can such things happen in a world where balloons still go up, and bring such joy? How does the world keep going, when i can't even breath?
Ellie will be moved Monday. As she is no longer in my care, but is a ward of the foster system, I won't be able to go with her, or see her off. I don't know when i'll get to see her again. It's up to her guardian ad lid-em, and case worker. I have been branded a horrible mother and had a judge take away my baby. all because i can't get her the help she needs. If she had cancer, or and addiction, or anything else, i could. But my baby is Mentally Ill. and no insurance will cover treatment. after all, it's all in her head right? it's ripping me apart, all the murk that is clouding the waters. She is telling stories of sexual abuse, pointing fingers at the one person who would never hurt her, and ripping our family to shreds in the mean time. I know that something must have happened to my little one, i just don't know who did it. all i have done her whole life is try to help her be safe in her own mind. maybe now, away from me, she can.
One daughter lost to a mental illness, one i'm loosing to a brain defect. How can such things happen in a world where balloons still go up, and bring such joy? How does the world keep going, when i can't even breath?
Wednesday, August 13, 2014
Hope will die...
Make memories they say, memories of Hope. Memories with the big kids and the baby, so when the baby dies, you have them. When the baby dies. How do you come to terms with a sentence like that? Your baby will die. Period. No other way, no other choice, no Hope. Ironic what we choose to name her, when in the end we will loose her. Hope will die. If i say it enough, will i believe it? probably not. Can i change it? no.
Mary has the faith of that proverbial mustard seed. Jesus and Heavenly Father answer prayer, and the will answer hers. She prays daily that Hope's brain will heal and she won't have to die. How do i teach her about the NO answers to prayers? How do i not have that faith? How can i know with out a doubt that the Lord is there, and listens, and know that there are some prayers that can't be answered? I know that He can do miracles, but i don't know that he will do one for me.
That means that at Christmas time, instead of cuddling my new daughter, i will be picking out an urn for her remains to rest in. Hope will die. How can that be real? How can I go on, mother my little ones, pray for my big ones, and be a wife for my poor dear husband? He is in pain, and i have nothing to offer him. No strength, no insights, no words of comfort. Only the one sentence of pain, Hope will die.
I haven't missed the irony of the loss of Ellie to the state either, due to a brain defect, due to mental illness. I haven't come to terms with that either. Another day for that maybe. For today, we took Hope to the movies with Mary's Girls Scout troop, to see Rio 2. Horrid movie, so boring, and the baby just doesn't like the smell of popcorn.
We will make memories, it's all we can do, and in the process, wounds and scars that will never heal.
Mary has the faith of that proverbial mustard seed. Jesus and Heavenly Father answer prayer, and the will answer hers. She prays daily that Hope's brain will heal and she won't have to die. How do i teach her about the NO answers to prayers? How do i not have that faith? How can i know with out a doubt that the Lord is there, and listens, and know that there are some prayers that can't be answered? I know that He can do miracles, but i don't know that he will do one for me.
That means that at Christmas time, instead of cuddling my new daughter, i will be picking out an urn for her remains to rest in. Hope will die. How can that be real? How can I go on, mother my little ones, pray for my big ones, and be a wife for my poor dear husband? He is in pain, and i have nothing to offer him. No strength, no insights, no words of comfort. Only the one sentence of pain, Hope will die.
I haven't missed the irony of the loss of Ellie to the state either, due to a brain defect, due to mental illness. I haven't come to terms with that either. Another day for that maybe. For today, we took Hope to the movies with Mary's Girls Scout troop, to see Rio 2. Horrid movie, so boring, and the baby just doesn't like the smell of popcorn.
We will make memories, it's all we can do, and in the process, wounds and scars that will never heal.
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