Sad birthday--posted late due to lack of internet

Happy (sad) birthday my little love, Aquila. Mommy misses you with a deep and aching pain. i try to imagine your impish little 2 year old self bouncing through this small farmhouse house that smells of woodsmoke.... but even my imagination is fleeting. i wonder what you would think of the green moss covering the trees...if you would enjoying making dough ornaments with your sisters... if you would be chasing after the kitties... i wonder so many more things about you than i know. i knew you for such a short time- and yet here i will pine for you the rest of my life. how unfair it all is Aquila....
i am posting this today, on the two year anniversary of the day i laid you in the ground.

one day i will be a good blogger

one day i will remember to update my blog on a regular basis...one day i will be on top of everything---NOT
We have been busy finding and buying the perfect farm house....
here is what we found

We should be moving into our own little house in the woods before December is underway...
and little Willow is making big progress

guest post

we have a friend and her son living with us here in Oregon. She asked me if she could write a guest post, so here it is:

On Anger...
Let me tell you about the Liz I know

I have heard and seen people comment about how Liz (and other moms with Hb losses) is "angry and bitter". These people, sometimes even family and friends, say things from "Im worried about you, your blog is so angry!" all the way to "You are just an angry woman, bitter and mean, who cannot get over their loss, and who wants to frighten others". While a few are well meaning, none seem to understand what is actually going on, and don't get to see this family in action, daily.

They misunderstand that her blogging is often a way to work through hurt, pain and confusion. It is not a window into daily life, but a type of therapy. When there is no place for grief or hurt in the hustle and bustle of daily life, the internet becomes the sole outlet for this much needed expression. Its a way to have your feelings validated, to know others have been there, or are there to see you through, and to share your story with other moms in hopes of saving a life.

People also forget that the loss of a much wanted baby is not something you "get over", the hurt never goes away. When you add the fact that it was a death due to someone elses gross negligence, and that person continues practicing, unpunished, like nothing ever happened, the injustice is a wound nearly as painful as the loss. I liken it to losing your baby to a drunk driver- but this driver doesn't even get a ticket, and goes on to make a lot of money by driving cars while intoxicated, and promoting drunk driving to the public. Imagine that! How would YOU feel?

But as justified as her anger is, she is simply NOT an angry person and does not live life in bitterness. I don't know how she does it, but Im here to tell you that she handles this tragedy with much grace, and lives as normal a life as anyone.

This is Liz, today:
Liz is very smart, full of energy and ideas, determined, very organized, deeply loving and a true Christian that lives her convictions. This is a mom who is devoted to her family, cares for her friends, sacrifices to help strangers, and loves with the force of nature. A nurturer, a friend, a partner; she gives 110% to all. Each and every day is full of smiles, laughter and love, even when things aren't going well. Indeed, its when things are at their bleakest, the strength of her character shines through. She is a great wife, amazing friend, and a wonderful mom who is there for her kids. Always present, both physically and emotionally, they want for nothing and are some of the happiest, most positive and well behaved children I have ever met.

Aquila is never far from their minds, and she is always mentioned with love. Random comments about Aquila pop up, like flowers, out of daily life: "I bet she would have had hair like Sebastians!", or "We are making a garden for her every house we live in", or "I think Aquila would be buddies with Jack (my son)", etc. Not a day goes by that she isn't thought of, or talked about, by all. Imagining the kid she would be today is part of remembering her.

Between schooling, playing, cooking, and the other routine things, there is just not much time left for anger. My son and I are living with them right now, So I see Liz every day, all day- the good, the bad, and the funny. I'm not saying she's perfect, she is a human like all others, just that positivity is what makes up day to day life at the Paparellas. The justified ire she has for dangerous midwives, and those who champion such causes, is reserved for online activities, it doesn't spill over into family life.

I hope this clears up some misconceptions people may have. I should never have to see such a wonderful person in tears, fearing the loss of loved ones because they think she's become "angry". I'm not exaggerating when I say that there is no one else out there that will stick by you, and support you the way she will, all without a second thought. She deserves the same.
Stacey Westover

still life: spoken word blog round up

Angie over at still lifew with circles and also still life 365 has come up with another amazing prompt. i want to thank her from the bottom of my heart for this spoken blog round up. hearing the voices and seeing the faces of these woman whose blogs i have been reading for so long was monumentally moving. i hope mine contribution can measure up.
here is my video

time and grief

time marches on. the days pass. when your baby dies-you are sure that time will stop- should't it stop? Shouldn't the world cease it joyful spinning,if only for a day, a week, a year?
you cannot fathom 2 years away. time without her too terrible to contemplate.

yet- the weeks creep by,pages relentlessly turn.

i am left with so much more of missing Aquila than i ever had of simply loving her. all the time i had to get to know her was hidden under my flesh her near my heart.It seems like, on days like these, she was just figment of my imagination- a private dream. She doesn't matter to the world anymore. To most she is merely something i should have gotten over by now. something that i am just stubbornly refusing to let go of.
No one says her name, hardly even me. I want to have her be part of normal conversations, but it so pains almost any audience- that whatever normalcy i tried for falls flat and heavy on the floor.

as my chaos slows after the move, i am left with deep and heavy sorrow. i miss her so much. How many ways can i say it? There should be a million words to describe the many ways that grief feels..like snow for Inuits.

sorry

i apologize for being the worst blogger ever. i have been very busy. we arrived in Oregon exactly two weeks ago today, after staying in Oklahoma for a month to spend time with family. We are staying in a rental house in a suburb of Portland while we look at properties to buy in the country.

This land is so breathtaking and beautiful. i LOVE the overcast/drizzle/GREEN. i guess my English Grandmother's genes shine through in the climate. I don't miss the brown/HOT climate of Texas one bit. There are people i miss dearly though....

Here we are making new friends. Everyone we meet is so friendly- except for the few 'Portlandia-style' hipsters that can be found almost exclusively in downtown Portland.
here is a very cute video of my water-loving baby girl
willow's bath

my rainbow - one year old

one year ago my darling rainbow baby Willow was born, 9 weeks early. I had a chorio infection and she had to come out. She was a tiny little plucked chicken, with no butt and sticks for limbs. She had tubes and wires and IV's. she could not breathe or eat or poop or cry. modern technology did it all for her, bringing her from certain death to life.

Now, today she is one year old and thriving. She crawls and cruises. She says a few words and plays several games. she loves chocolate. tonight she will have a huge slice of chocolate cake all to herself.

Willow brought joy back into our house and we are all madly in love with her. Thank you Lord for bringing us Willow!

to the oregon midwives

a little bird told me yesterday that some of you have been talking about me...that some of you are very distressed that i am coming to your fair city. Some of you are worried i might shake things up, and topple your stauts quo-

thanks for making my day!

i hope any crappy cpms or unlicensed "midwives" are shaking in their boots at my arrival. I have great plans to change Oregon's midwifery situation to something that benefits mothers and babies- not woman who are too lazy or ill informed to get a real education or license.

if you refuse to get a license- i have no respect for you
if you have dead babies under your belt- i have no respect for you
and if you keep yourself in business by emotionally manipulating your clients - i have no respect for you

i also am not afraid of you- you have no power over me....


see you soon !

the move

We sold 3/4 of all our possessions. We packed everything we owned into one large POD and one small cargo trailer. Then, we loaded up 6 kids and 6 pets and said goodbye to the house where Aquila died. I honestly can't say i will miss it one bit. I will however, miss several good friends in Austin.
On Monday night we filled up a local BBQ place with our friends. It was bitter sweet- seeing them, and also knowing i would not see them again in one place like that.
Goodbye Austin. Farewell to the stain of Faith Beltz and Centrevida that cling to the city like skunk spray. Farewell to 110 degree days.

I am on to greener, cooler pastures, and new adventures. I am working on a series of projects that i will reveal as they become more presentable.

of course, it's like the old phrase- where ever you go, there you are--- except for us it is ' where ever we go, there she is not '
i miss her so much

But, babies die in the hospital too......

this has been the number 1 thing said to me over the last 20 months. i just read a breakdown of the stats that is truly phenomenally presented. please go over to 10 centimeters to read why saying "babies die in the hospital too!" is utterly ridiculous.
http://www.10centimeters.com/friday-fallacy-babies-die-in-the-hospital-too/

family vacation, Paparella style

so, since our foster kiddos are no longer with us it is time for the Paparellas to search for greener and colder pastures. Unable to make a decision about where to move, we decided to go on a 3 week adventure across the country, sampling what there is to be had. Along the way we met many friends and had many mishaps and adventures. here are some pictures....

we saw so many beautiful things and met so many wonderful people, but i think i was most won over by the ocean.....

wouldn't you be???


can anyone guess where we are moving?

exclusively breastfeeding the premature infant

I have breastfed all of my babies, except for my adopted daughter (who i pumped milk for), my step son, and of course Aquila. So having successfully nursed three babies through 2 years old, and pumping for 9 months for Ruby, I had no doubts that i would nurse Willow.

After losing Aquila, then having the frightening experience of almost losing Willow, i was determined that i would breastfeed her. For me breastfeeding is my normal as far as mothering goes. nothing is less normal than burying your newborn, and nothing is normal about delivering your child at 31 week gestation. So, upon Willow's early arrival i craved a taste of normal. I was plagued with the memories of my breasts engorged and leaking with no baby to nurse.

Due to the chorio infection and days of IV fluids, and on having been 31 weeks gestation it took 5 days for me to get my first drop of milk.

first milk- 5 days postpartum

i pumped every 2 hours for 20-30 minutes those first 5 days, weeping because i thought my milk would never come in. I thought, “how dammed ironic is this? here i am with no milk for this living baby, when 9 months ago i was overfilled with milk for a baby that needed no nutrition.”
luckily though, Willow was not put on milk till i had produced some, and i was able to keep up with her through a rigorous pumping schedule.
Willow was on a C-pap for the first 10 days of her life. for those ten days i was "allowed" to hold her for three one hour sessions a day. she was not able to nuzzle at all, as the equipment was finikey and would pop lose. she also was still having A's and B's which also made it hard to move her to much. so, for three hours a day i would sit, with my little Roo inside my shirt.

Finally, she was able to step down to the nasal canula , which allowed her to have her first nuzzle session, where to my surprise she latched for a few sucks.

willow's first nuzzle

she was moved down the nasal cannula and then down to no breathing equipment two days later. this made it possible for me to hold her anytime i wanted and once every three hours, while she recived her feeding from a gavage tube she could attempt breastfeeding.

And here entered the biggest fight of the NICU -exclusive breastfeeding.
See, i wanted to leave the hospital with Willow exclusively nursing.... But, as the lactation consultant told me that was never going to happen. every baby born at 31 weeks left the NICU on bottles. period. babies typically leave the nicu at 36-38weeks gestation and breastfeeding is too hard at that age. bottles are easier.

i researched and tried everything suggested that was allowed. my he is that in this post i can help someone else struggling with breastfeeding their preemie. information is hard to find and all over the place. and it seems that when one method (bottle feeding ) is the standard, you are paving your own road to deviate from that path.

i struggled for 3 weeks with breastfeeding before throwing in the towel and giving Willow bottles .

We went home 5 weeks after birth, but almost would have went home 4 weeks. see, one of the neonatolgists agreed that i could take her home still on gavage feedings, so that we could learn breastfeeding at our own pace at home. Willow was having no other problems at that point. However, the three other neonatologists ganged up on me and changed the whole plan, going as far as to threaten to call CPS if i took her home.
One thing you must know is having a baby in the NICU is not like any other time you might have a child in the hospital. you cannot call in another doctor for a second opinion (they are all partners and will not go against each other), and you can't transfer care to another hospital. and if you argue with their recommendations, you can get social services called on you.
my argument was simply this--- there was no benefit to introducing a bottle. And, at the same time there was no harm in letting her go home on the gavage tube- babes go home on gavage feedings everyday (babies with special needs that make them unable to feed well). I am a very competent person, who had proven my understanding of everything explained to me and many things not explained o me. i also had approval from my insurance for daily nursing visits to check the tube and anything else. at the time my husband wrote this blog post . that was after the first neonatologist told us we were going home and set everything in motion for discharge. then she was off for 5 days in a row and the other neonatologists decided that their control issues were more important than working with my family. so, i broke down and gave her bottles . She had no problem with the bottles and we went home 4 days later.
for the next two weeks we worked on getting her off the bottles. unfortunately she still wasn't getting a sufficient amount of milk from the breast so we used an SNS . we had to use the SNS for about 4 weeks before she could get enough from the breast. i pumped every 3-4 hours through all this. it was exhausting and draining, but i could see a light at the end of the tunnel.

during this time we visited a private lactation consultant who diagnosed Willow with a bubble pallet. this was causing (and continued to cause) most of her problems breastfeeding. She could not effectively nurse on one side till a few months ago. so i only nursed on the side she could do and pumped the other. i still continue to pump, not because i have to, but because i donate and wanted to continue. i have donated around 2000 ounces so far !

So- after all the hard work- Willow breastfeeds great. And you can get here too!

tips and links for breastfeeding in the NICU and beyond:

*as soon as possible hold your baby skin to skin , also called kangaroo care.

*As soon as possible let the baby nuzzle the breast. Preemies are VERY sleepy and have very little energy for feeding, so don't overstimulate them by rocking, singing etc while they are trying to nurse.

*Get comfortable. Use the crossover hold . Cradle hold will not give you enough control over their tiny and wobbly head, and football hold tends to 'drown' them and make them aspirate. Use pillows to bring baby up to you. Boppys suck for preemies. Just roll up blankets and fit them where you need them. Try doing reclined nursing this really helped us.

*get a scale. Get it now. The NICU has plenty- ask for one to be stationed in your baby's area. Weigh baby before a feed and directly after (don't change the diaper first!) the grams gained are equal (almost exactly) to CC's of breast milk. *this is s very effective method of judging amount taken in*. You can find out how much you baby needs per feeding here , but you neonatologist will tell you also. When you come home from the NICU , rent a scale. Google breast milk scale rentals for your area. It is worth every penny for the piece for mind of knowing your baby is or is not getting enough.

*If your baby is not getting enough, invest in an SNS. They really work. My NICU gave me one for free when I asked.

*Have your baby's mouth checked for tongue ties and pallet issues.

*Stay at the hospital if at all possible and try to be there for every feeding you can to practice nursing.

*If your baby doesn't get enough in a feeding – you must pump to maintain supply-especially in those first 6 weeks. This is crucial. When you have a preemie- your pump is your other baby.

* ask about cup feeding

*If your baby has no other problems medically except for feeding, ask about the option of going home on gavage. Studies have shown that it is not risky for the baby.

*If nothing works, give a bottle, get baby home and try everything in the comfort of your own home (with a scale!). You will amazed the difference in your breastfeeding once you are not in a stressful place like the NICU.



Pumping tips:

*start pumping right away.

*Until your milk comes in pump every 2 hours for at least 20 minutes.

*Once it comes in do not pump less often than 8 times in a 24 hour period.

*If you are having problems with supply try power pumping. It works wonders!

*You can take a 5 hour stretch of sleep at night, but you must make up for it by power pumping. I watched several moms lose their supply because they would not pump to sleep (which is fine) but would not make up for it later. Just remember you wouldn't be sleeping for 5-8 hours strait if your baby was home. Your breasts need that stimulation in those early weeks.

on people's opinons on grief that does not belong to them

tonight i watched my recorded episode of 'Secret life of the American teenager' . i have watched every episode since the beginning, as i have now fostered 4 teen moms, and they all insist on watching it..
and well (embarrassment) now i can't.stop.watching....

i was very very upset that the writers decided to have one of the main characters deliver a stillborn baby girl last week. Not that i don't think media should portray the reality that some babies die--but that i know that a TV show cannot carry the weight that is baby-loss. I dread the episode when Adrian 'gets over it' ....

but anyhow, tonight's episode is supposed to be fast-forwarded to two months after Mercy's death. Adrian is depressed and angry.She will not leave the house and is eating all day long. Everyone on the show is worried about her, and trying to make her better.

watching this i am wanting to scream at the screen- 'WHAT SHE NEEDS is to talk with another mom who has lost her baby! What she needs is all of you to back the F off her case'
and what the writers had her say struck me. She said " i am so sick of hearing about how everyone is worried about me.it is such a burden. it is so heavy on top of the burden of losing my baby!"
I thought YES - this is it!

all the advice and judgment that has been handed to me over the last almost 18 months is a burden. Well meaning people (and some not well meaning people) seem to just jump at the chance to decide how i should carry my weight- and seem to have no filter for telling me.

I do not care if you think we should have waited to have Willow.
I do not care if you thought, or still think i was not or am not dealing with my grief appropriately.
I do not care if you do not like that i am angry.
I do not care if you think we shouldn't foster, or move or do anything 'rash'.
I do not care if you think i should or should not sue my midwife.
i do not care if you think anything about what i should or should not do in MY life.

do not add your burden onto this weight i have to carry. you may think you would do it differently, or better than me--- but really you should just be thanking God that you do not have to try.


*note- there are many people i have asked for advice- i am not talking to you. i am mostly talking about people who have said ugly things. if you are worried i am tlaking about you- just ask. i don't bite. promise.

goodbye

yesterday we said goodbye to our foster children.i will miss them terribly. i am unsure at this point where they will be , as the whole case is a grand mess right now- but hopefully they will continue staying with mutual friend of mine and the birth mother's. My house is so oddly quiet (even with 6 children).....

blogroll

i have been added to the Stirrup Queen's Completely Anal List of Blogs That Proves That She Really Missed Her Calling as a personal organizer.
http://www.stirrup-queens.com/a-whole-lot-of-blogging-brought-to-you-sorted-and-filed/
this is a great resource for those hurting from baby loss, infertility, those fostering or adopting etc. please go check it out.

right where i am project : one year, 5 months- from Gabe

this was Gabe's take on Angie's project.

One year, 5 months.
by Aquila's daddy-


There are some days that I don't think about my daughter being born already unconscious for several minutes in a rush of blood. Or my toddler boy explaining with wild eyes that his baby sister died coming out. Or my wife devastated. Or the chicken bones that were thrown in the kitchen trash by one of the wonderful families caring for us when we were grieving. Or our basset hound who swallowed the chicken bones and had to be euthanized. Or any of the sharpest pains I felt at that time.


What I have now is the space that is left, where I used to believe that if you did good, if you trusted, that Nature would protect you and your family. I feel anger now, and hatred, mostly at myself. Holding my wife's hand as she had contractions that were too strong, as she had way too much bleeding, not saying, “fuck this we are going to the hospital”. Trusting birth, trusting my midwife who in turn was trained to trust birth. Not remembering my own family's experience with a critical eye.


I was born unassisted by any professional care provider. My mother labored with her best friend and my father with her, in an AirStream trailer in the late-August Texas heat. In her circle of friends in the back-to-nature movement in the seventies, there were a few other couples that did this. One of them did not transfer to the hospital in Johnson City until hours later than they should have. Their daughter was born with severe brain damage. Life didn't bring her (the daughter) any happiness, and she killed herself about three years ago.


So I ask myself, why did I keep on trusting birth? Why did I believe in a supernatural aegis of protection? Did I think my family was more special than her parents? Really, I never thought about it, except to be afraid of not knowing what might happen or not being able to control it, and so responding to my fear I would prostrate myself further to this way of thinking. It would decrease my self-examination and in so doing give myself a reassuring rush of comfort, like a hit of opium. I did that during my wife's labor. Here's a cool rag honey, it will all work out. I should have been defending her and our daughter. My family doesn't need me to think happy thoughts, they need me to protect them.


Now I have this space where faith used to be, not at all convinced that it was ever a virtue. I detest the supernatural explanations for things that used to satisfy me, and I miss the feelings that they used to give me. I sit in the audience at my family's church, which I saw as pleasant and innocuous but not a path to truth before Aquila died, now finding myself powerfully put off by messages everyone else takes as endearing. For example, the sermon where the pastor described climbing up a small but steep hill with his young son holding onto his back, feeling alarmed at one point about their safety but getting through it, and his son's explanation to Mom upon returning home, “No, Mom it wasn't scary. Daddy was there.”


Yes it was safer that Daddy was there, and I don't propose we all raise our kids in gerbil balls. Neither to I propose we try to explain to our toddlers that they could die horribly at any moment. I'm still dealing with my oldest daughter's terrors at night that her parents might unexpectedly die. I would like them to go on not worrying about it when they are children. But I can't bring myself to have faith again like I had as a child. From where I sit, there is no Nature, there is uncaring, insensate nature, that brought us into this world by a self-emergent network of interactions that favored self-propagating networks of interactions, and any old thing could let it all slip away.


I feel anger at irrationality, especially if it hurts kids, like anti-vaxer conspiracy theories, or the reckless narcicism of unassisted child-birthing. I was an anti-vaxer. I was against the hospital birth model before. I feel disgust at the sentiment that death is okay, a natural part of life. We are fortunate enough to be here, and we cease to exist when we die. So how could dying ever be okay? Why is everyone so at peace with 100,000 people dying of old age a day? Or so ecologically conscious all of the sudden that 100,000 deaths per day is a small affair. People believe that there is a Natural Order of Things. Things Happen For a Reason. “Gott mit uns.” Oh, sorry, that last one was the motto of the S.S. God is With Us. They wore that on their belt buckles.


That's where I live now. I lost my trust and faith and got anger and hate. But I've had my spring, too. The things that hurt and terrified me before, that I would have to watch my children realize one day how bad it was all going to hurt, to see them suffer their own losses, to leave them to bury me and their mother, I used to stop thinking about and soothe with comforting beliefs and magical thinking. Now, in the absence of anything to believe in, I feel free to dream of a world without those terrible things, free to plot the victory of humanity over all the terrible facts of our existence. Because if nothing is Meant To Be, then that means our suffering is just a relic of chance, how we got here. We have no divine protection, but then the specters of disease, suffering and death don't either. And so I have dreamed.


I wish I could have been man enough to wake up and look at the world on its terms before this. I looked away and my baby girl died. I try so hard to not hold despair in my eyes when my kids ask me about what things will be like when they grow up, but instead hold onto that hope for them in the world, hope grounded in fact. I want so badly to make that world for them. I go back and forth between wanting to change careers, be a research scientist and find novel disease finding drugs and other therapies, and just doubting the idea that a man so prone to inaction that he watched his daughter die in the womb is what the leading edge defending humanity needs right now. Would she want me to go out and defend the rest of the world after I didn't defend her, or would she have nothing to say, because she never knew me and I just trusted somebody else and let her die?

right where i am project : one year, 5 months

Angie , over at still life created this project. For grieving mothers to talk about where they are in their grief now. Because grief does not ' go away'. people like to say it "gets better over time". maybe it does with the loss of a grandma or a dog. But the loss of a baby does not go away. it does change though.
i am certainly in a different place now than last year, or even last month. My grief ebbs and flows it changes daily.

angie said
"I have read about this happening to other people. I remember from my early days reading about it with people years out. When their real life peeps into their online diary, and then have things held against them. They went private or password protected or went anonymous with a new blog name. I don't know how to deal with it, because I never thought I would care or not be able to just ask someone if they were reading my blog. I don't want to ask now and draw attention to my blog, and on the other hand, it feels like a violation if someone is reading about my emotions on a day to day basis. And that is just it. In the beginning, I didn't care if people read because I knew that grief was trumping everything. Now that people expect me to be normal again, I can't quite figure out why I ever thought telling anyone about my blog was like a good idea. And yet, I have come to rely on this space. So, that is the awkward grief place I am at now. I don't mind if people in my day to day life comment, or let me know they are reading, it is the awkward place of me not knowing what everyone knows. If they read here, they know way more about me and my weird hiccups in life than I know about theirs. It feel unsafe sometimes. It makes it sound like I dwell in grief, but this is the place I process that part of my life. And it is so important, I can't give it up. Blogging is strange, because the temporary feelings become permanent, and little dalliances with the annoying take on the gravitas of epic angers. Nothing is ever permanent with emotions. Nothing, except people can pull up a specific blog post and say, "But you feel like this.""

and what she said there is so how i feel (i bolded the points that really hit the nail on the head). Grief is such hard, dirty work. there are several people in my life (many who are actually family) who have taken what i write on here and stabbed me with it later...or taken my words and silently judged me..or gossiped about me with other people in the family. what i have to say to those people is ' shame on you.' it is so blatantly obvious that you have never been through anything resembling what my family has been through. If you had you would never take my words here and twist them or use them as weapons.

Why is it our society at large says the only way to acceptably grieve is quietly, alone, or with your therapist? Other than that, any negative emotions must equate to mental instability. Well, i have news for you---- this is dirty , real work i am doing.it is not pretty. i refuse to pretend to be pretty to appease your discomfort. What happened to Aquila was wrong. i have every right to be sad..to be mad... to be indignant at the whole mess. i was robbed. i was cheated. i am mad. i am STILL MAD.

But that in no way means i don't love my kids, or my husband.,,that we don't laugh or play.. that life does not go on.

So where am i right now?

i am coping. i cope by keeping busy. when a still moment comes i feel myself suffocated with self-pity. so i keep those moments as rare as possible. i focus on others instead of me. We have two extra (very time consuming children) here in the house. i find that keeps my sorrow put away. I just have less time to wallow..to picture the little dark haired impish girl running through the house. Even typing this opens the floodgates. so, that is why i still blog...even after all the crap thrown at me for it...i blog to be near her. this is the little compartment she fits in.

please: if you do know me in real life, and you read this- say something. just hello, i read at least...

sad news.

today i heard of another baby dying last night in a homebirth. it was a friend of a friend's attempted HBA2C. i am so sick of homebirth midwives taking clients who are clearly high risk and then saying things like ' babies die in the hospitals too '.

prayers sent for a family of 4 who should be a family of 5........

a sweet sweet little girl needs a home

baby Maeve has lost her family. you can read about our family and her here
she is back to waiting for a mama and a papa to claim her my heart is broken and i can't stop crying. please pray hard for her parents to find her!
go here if you think you might be her family!

the closest Willow can get

to playing with her sister....playing with a locket of Aquila's hair...

On fostering, some thoughts

we get a few comments anytime we step out of our house. one of course is "my, you have your hands full!"

yes, yes we do.

another is "how many kids do you have now?"
the answer on good days is "8 in the house" which i say to circumvent the whole "i have a dead child" talk...which i rarely have the time or emotional energy to get into. The answer on bad days is "umm..i don't know?"

but my least favorite comment is "oh, I thought about fostering, but I just couldn't do it. I just couldn't let them go."

i never know what to say to this one. I cannot figure out if these people are insulting me , or themselves more. See i take it as they are in a way saying i must be quite cold-hearted to be able to 'let them go'. like i do not get attached or anything. Or else, they might be saying they are too selfish to consider the needs of child that is not their own over their own emotional needs.
well for each train of thought i have a response-

i am not cold hearted. i bond with and get very attached to every child we have, even the teenagers who mouth off and then steal from my wallet..of the baby who won't.stop.crying.... or the toddler who hits me strait in the face. They don't have to be "mine" for me to love them like they are mine.
i see it like this--- imagine you have a sister. she gets very sick and can no longer care for her children. they are your nieces and nephews. you take them into your home. would you treat them differently than your children? would you hold back your love from them? would you not fully support them returning to their mother when she is able to care for them?
I don't see my foster children as "my' children, but they are children i love. i claim them.

and about the other side of it. i have a dear friend Toni who says "fear of heartbreak is the stupidest reason ever not to love a child" Amen Toni.
Fear of heartbreak is the stupidest reason not to love anyone. we were made to love.

happy Mother's day

another day without my baby girl Aquila. Last year, without a baby in my arms, church was torture. this morning, i look forward to praising god for the one i will be holding.

But, i will still be missing my forever baby.....

the situation we are in

shortly after Willow's birth i was ready to pack up and move away...to Kentucky...how random does that sound??
I have always wanted horses as long as i can remember and grew weary of Texan summers mixed with red hair and freckled skin years ago. I wanted a farm where the kids could run and i could fulfill my lifelong dream. Added to that was the constant reminder of my daughter's death when i am showering , or sitting in my living room. i am afraid to go to any parent type groups or LLL meetings, for fear of running into someone who knows my story, or worse yet someone who wants to go on and on about how wonderful homebirth is. My biggest fear is running into someone who had Faith Beltz as their midwife. i don't think i could deal with it. So we became recluses. And i began planning our move.

Trouble is my plan was not God's plan (at least not yet). God's plan was that i take on two children near and dear to my heart to keep them from getting swallowed up in the system. to give their mother a chance to get it together. So for now we sit, and wait.
Kentucky is on hold, and i am holding, holding....

and God is daily reminding me that serving him is not about what is easy, or benefits us, or makes us feel good. Serving him often means forsaking our selves, our needs, our desires.

i just keep chanting---- this isn't about me...this isn't about me....

the Paparella brood is officially on Facebook

yep, it is official. The Paparella brood has a fan page- please come on over and 'like' us, so you can hear more about our crazy life and even see more cute pictures!

an open letter to the NICU staff

today we all went to the NICU reunion, held at the park near by the hospital where Willow was born. Seeing all those familiar faces brought back a lot of memories and clarified some things for me. so now 7 months later i want to tell some people some things --- i know some of the NICU staff still read my blog, maybe they will pass this along to the rest....

Dear NICU nurses and doctors.
First off, thank you for saving my baby's life. Without the staff and life saving equipment of the NICU at Seton hospital my daughter would not be here today.
There is one particular Neonatologist, one lactation consultant, and 4 Nurses who were so unbelievably kind and supportive to me. They went over and beyond their jobs and treated me like a human being. I will never forget you women. Thank you from the bottom of my heart for giving light to such a dark, scary time.

To the other doctors and nurses who cared for my daughter-
Realize when you go into work everyday and care for those babies- they are someone else's children, not in any way your own. Don't get into pointless power struggles with the parents over things like lotion or feeding choices. you will not be raising these children. Do your job, don't take over their's (parent). When you search for your patient's parents blogs online and find them, don't say nasty things about them behind their backs to other nurses and doctors. They will hear about it all.
This is probably one of the hardest things they have ever had to do. Their brand new baby is struggling to breathe, eat, grow. You have no right to judge them for how they process this.
Some of us want to spend every waking minute in there holding our baby. Some of us can't get to the NICU very often due to families, jobs ect.
You have no right to judge us about these choices. Some of us want to exclusive breastfeed. we don't want our babies getting bottles. We are not freaks. please don't treat us this way. some of us don't want to breastfeed at all. we are not bad mothers. please don't treat us this way.
Everyone is not like you. everyone does not parent like you. Your judgment does our patients a disservice, and i truly hope you reflect on my words. I heard the things you said about me, about other parents. I felt you annoyance and disdain for me. i heard about your "tattling" on me to the doctors. Despite your opinion, my daughter was growing just fine with me holding her all day. It has taken me 7 months to put it into words just how yucky you made me feel day in and day out. had it not been for your co-workers i would have lost my mind.

the further out

the further out i get from Aquila's death, the more my grief becomes hidden. i talked with a woman at church today about Aquila, and she talked about her miscarriage.
she was crying, i was not.
what is wrong with me that i can discuss my daughter's death and not cry??? but then, some random thing sets me off? This poor woman must have thought i am batty or made of stone.
I miss my baby girl so much, every day....i just don't want to share her with everyone i meet anymore..like her story is just too tragic. there are not any happy times, or wonderful memories. She died before i met her. Someone i loved and trusted completely failed me and failed at the job i entrusted her. I couldn't even hold my daughter for days. i never saw what she looked like before death changed her.