our trisomy journey- God's gift of jedidiah joseph

speaking at HB 954 committee hearing

2012-02-24T22:05:00.001-05:00

i went down to the capital today and spoke to the committee hearing HB 954. it was the first time i spoke publicly about jedidiah and it was both incredibly hard and incredibly healing- just being able to share his story.
i was the last to speak and had to cut john just a little short on a nursing session when they called my name. i was SO ultra nervous, but the chairman was really understanding and kind- he even commiserated with me when john spit-up ALL over my pants during my testimony.
i wanted to share my notes on my talk. i did expound on a few points- mainly in answer to some of the previous speakers- but here are the nuts and bolts of it...

Good afternoon,
My name is Elizabeth Arendale and I am Jedidiah’s mom. Two years ago my husband and I conceived Jedidiah. When I was 19 weeks along we learned via ultrasound that our son had many many markers that indicated he had trisomy13- a diagnosis that we were told does not support life. During the same hour that our dreams were dashed we were also counseled to terminate our son’s life- since he was going to die anyway.
I immediately began surrounding myself with my support system- the friends, family, and strangers even who were to help me carry this impossible load. I started a blog to keep my friends and family up to date. At one point Jedidiah’s blog was getting 75,000 visitors a week. People as far as China, India, Russia, Australia, Holland, Lithuania, Brazil and many other places were logging in to follow our story. I like to think these visitors fell to the contagion of hope. Parents who dared to hope. Parents who dared to love in the face of death. They sent us many notes of encouragement and they offered up many prayers for our intentions.
Jedidiah defied the odds and was born eight days after his due date on November 5th 2010 at Emory University Hospital right up the road in midtown. We knew he was a fighter when he survived the first night, and the next night, and the next. The following Monday he was released and we joyfully took him home. His siblings loved him deeply. They took turns holding him. And true to siblings gave him a nickname- calling him Jedi and Jedi Joe. They got a chance to meet their brother. To love him. They also witnessed their father and I unconditionally loving Jedidiah despite inconvenience and sorrow. This is the gift Jedidiah gave to us and continues to give us.
For 13 days and 4 hours we got to hold him and love him. Early November 18th he passed away peacefully in the same bed he was conceived in- my husband and I holding him and whispering words of love to him. Not many people can say they were surrounded by love from birth to death. At his funeral that Friday there were so many people - so many who came to hold us up.
Looking back to that day in the ultrasound room I am so thankful I didn’t heed the advice of the perinatologist. While at that time an abortion seemed like an easy way out it I knew instinctively it would have given me a lot more pain than joy. It would have given me a secret pain that I wouldn’t have been able to gather support for. My family and I pray for mothers in the situation we faced- Mothers who are scared and confused. Mothers who want to say yes but feel like they can’t- that it’s not an option. Once during one of these prayers, Jedi’s big brother, my 8 year old son said “if they say no they would just have the sadness and not have the good times.” And that is true. I now believe the easier way out is letting nature take charge. We have a grave to take our tears to. My son has a place of rest- fitting for a Jedi. An abortion would have taken that- and much much more away from me, and it would have claimed to be the easier way out.

and i had this thought on my drive home- too late- but i need to write it down here so i don't forget.
i have heard stories from older mothers- mothers who have a stillborn child. they mourned the loss of their baby, but added to the grief were the actions of the doctors and nurses- how they whisked the baby away thinking that it would be easier on the mom if she didn't see her own baby. they made this decision for the mom- thinking of her best interest. the medical world has only found out within the past few decades that mothers have an easier time of grief if they are allowed to hold and be with their babies.
i can't help but think how in the future we will look back on these years and think "i can't believe we used to think that abortion would be an easier option, a way to bypass the heftiest part of grief."

a mii for jedidiah

2012-01-13T10:41:00.000-05:00

the kids made a mii for john and samantha said "hey- why don't we make
a mii for jedi?"
i think it is just so cute! and looks like him don't you think?

jedidiah's playground

2011-12-31T14:21:00.000-05:00

chris' parents dedicated the playground at their church to the memory
of jedidiah. here are a couple pictures of the final assembly. i
think it's just such a beautiful and thoughtful gift and i hope the
kids get alot of wonder filled play out of it.

introducing john cornelius

2011-11-22T23:35:00.000-05:00

after what seemed like weeks of prodromal labor...
he decided a quick entry would be appropriate.
here is the short and sweet-
departed home @ a little before 5 pm(AKA "rush hour")
arrived at hospital @6:15
made it into an l&d room @6:33
john cornelius entered the world screaming at 6:45
below you will see me texting with his dad earlier today. yes- his
contact name is "ice ice baby"- but that's purely for an "in case of
emergency" situation. his contact name used to be "better than
chocolate" and he lived up to that name and some today.

thank you for your kind messages, thoughts, and prayers

2011-11-19T19:37:00.002-05:00

i have received so many sweet messages over the past three days and i'd just like to say thank you!

i was really hoping to not go into labor and have to be in the hospital for jedidiah's feast day. and friday night at about 10 i sat back on the couch and gave out a sigh of relief. it was a nice day of remembrance. we looked at pictures and shared our favorite memories.
and this morning one of my first thoughts was that jedidiah was giving a thumbs up to "dolphin"- like, "it's almost time for you little brother. you'll love them, and they'll love you. give them a hug for me- ok?"
i love those little gifts. sentiments of love shared by the community of saints that are bound together beyond borders of time, space, and infinity.

counseling

2011-11-16T08:38:00.001-05:00

i was raised in a family where it seemed the motto was "stiff upper
lip, nose to the grind stone". in a way it was good- things kept
moving. they had to at the risk of falling apart.
it was difficult to step out if line and ask for help because that
would mean stopping the machine.
so it has naturally taken me awhile to ask for help this past year.
ask any one of my siblings if it's easy to ask for help. guaranteed
they'll say "it's not easy" no matter what temperament they are.
i started seeing a counselor a few weeks ago. i admit being fearful
of post partum depression. i was fearful of that after jedidiah
died. so my fear drove me to ask for help. i was referred to a
catholic counseling service north of atlanta. and as i drove home
from my first session i felt kind of bummed. i risked opening myself
up- yet again(exhausting)- and i didn't get anything practical(what i
was expecting). i needed tools, advice, a "here's what you do in
*this* situation" type game plan. but when i came back through the
door and met the kids it occured to me. i don't need tools. i need
time and space. when i came back through the door i was ready to be
needed. ready to be the short order cook, boo-boo kisser, bottom
wiper, and shoe finder. and another thing occured to me. the last
hour at the counselor's was all about me. me and no one else. i
wasn't being needed. i had the time and space to open up and feel.
at home i revert to "stiff upper lip, nose to the grindstone" type
mentality. i can't step out of line and open up to my feelings or the
machine will break down. being needed constantly while grieving is
difficult and exhausting. i think what scares me the most is the
amount of "neediness" is going to shift big time soon. i'll be going
from having the youngest child in my care being a rather independant
and mobile 3 year old to a VERY dependent newborn.

so please pray for me during this time-as the anniversary of
jedidiah's death approaches- that i may have the grace for whatever
God sends me, that i may have the grace to ask for help, and that my
family will grow in holiness through it all.

more pics from jedidiah's birthday

2011-11-09T04:59:00.000-05:00

christina took these with her phone. she has an app that surprises
you with whatever filter, flare, or style it happens to choose.

jedidiah's birthday

2011-11-05T22:59:00.005-04:00

we went to first saturday mass this morning at st. monica's. father joseph concelebrated with father jack and it reminded me of jedidiah's baptism and confirmation- how they concelebrated those special sacraments. max and henry got to serve mass and it said for our family- a gift from christina and mike.
after mass we headed home for breakfast and to load the bikes and stroller in the van. a little before noon we headed out to conyers. i kept up with our "caravan" via text. fr. kevin, christina and mike, and my mom and dad were all heading towards conyers along with us.
we ended up out at honey creek woodlands at about the same time. i was so surprised to see joe whitaker there. he's the steward that helped us choose jedidiah's plot and is such a sweet and caring soul.

we hiked out amongst the changing leaves and crisp air. within a mile everyone was itching to shuck their top layer. the sun had warmed up and it hardly felt november. i remembered that while i was in labor a year ago- the weather outside was acting so squirrely. it was warm, then windy, then REALLY cold, then sleeting, and i think snow was reported on brasstown bald. it was such a weird surreal day. but then the following monday when we brought jedidiah home it was beautiful! sunny, warm, delicious. today was alot like that i think. and chris said as we hiked "it could be ALOT colder today".
we walked with mike's brother, gene's family. his gene's mother in law is buried not too far from jedidiah. while we visited at jedidiah's grave my dad presented me with a painting done by a friend and artist. it was so beautiful and seemed full of symbolism. i was touched with gratitude. after spending some time by jedidiah's grave we headed over to gene's mother in law's grave to pay our respects.
we had a little lunch at the picnic shelter and then headed back. i just kept thinking how beautiful it was to be able to have the hike in and out as a buffer- a way to prepare our souls for the memories and experience of the sacred space of our loved one's graves. hiking out we could gradually re-awaken ourselves to the pace and expectation of the living world. but for the hour we were out at the burial grounds it seems like time was frozen in a beautiful nature preserve.
we said goodbye to joe and headed west on 20 towards georgia tech. we decided to attend the saturday vigil mass at the catholic center where father kevin is stationed as chaplain. on the downtown connector we drove past emory midtown- the hospital where jedidiah was born. all day today i had been keeping up with the labor of a mom via a message board i am a member of. my heart immdiately went out to her. in that hospital- she labored with the same doctor on the same day as jedidiah's birth- except she was expecting twins!
at mass the second reading held the soothing words that father kevin used in his letter- and when the tech student read the words he and i exchanged knowing glances. "we do not grieve as those without hope".
after mass we headed out to dinner with my parents. and now we are back at home. AND-i returned to the good news that the twins were born safely and mom and babies are all doing nicely.

i have to edit this post to say thank you to all of you again. i will never tire in saying my thanks to every one of you. i just checked the page views from last year. november 2010 this blog got 49,550 visits. and it reminded me of the many beautiful notes i received from readers while i was in labor. those notes helped me more than i can say. and the continued support and prayers are gifts that i feel deep gratitude for. thank you friends. every year i will have masses said for "friends of jedidiah"- and know that you number among them.

happy birthday jedidiah

2011-11-05T00:32:00.000-04:00

most babies are learning to walk on their first birthday.
you are learning to fly.

be not afraid conference

2011-10-24T19:26:00.003-04:00

my brother spoke at the be not afraid conference in charlotte last thursday and so i got a ride up with him for the day. the conference was all about educating the support network of moms, dads, and families who are affected by a poor prenatal diagnosis. tracy winsor asked fr kevin to speak on grief within the arms of faith. she was especially touched by his letter he wrote upon learning of jedidiah's death. so he kind of used the letter as an outline and branched off from there.
one of the mom's came up to me after the talk and shared that her own brother- a protestant minister- told her she was sinning by grieving the loss of her baby boy. that since he was in heaven, her tears were somehow offending God. my heart ached for her. it still does. i am SO blessed to have the family that i have. sometimes i take it for granted. she spoke with father kevin afterward and i think got some healing and consolation from his words.
i also met a mom who recently lost beautiful twin girls who happened to share a heart. they died in august when they were 12 days old- and i have to repeat how beautiful they were. just gorgeous! we talked a bit about our experiences and i can't speak for her but it was healing for me to be with her. to just be with other moms that have experienced an infant loss- it's healing. you don't have to explain yourself, apologize, or guard yourself against insensitive comments.
i only wished i could have stayed for the rest of the conference. but friday was mary jane's fifth birthday and i wouldn't have missed that for the world.

freedom

2011-10-22T11:28:00.002-04:00

this is from the book "interior freedom" by jacques philippe

it is natural and easy to go along with pleasant situations that arise without our choosing them. it becomes a broblem, obviously, when things are unpleassnt, go against us, or make us suffer. but it is precisely then that, in order to become truly free, we are often called to chooses to accept what we did not want, and even what we would not have wanted at any price. there is a paradoxical law of human life here: one cannot become truly free unless one accepts not always being free!
to achieve true interior freedom we must train ourselves to accept, peacefully and willingly, plenty of things that seem to contradict our freedo. this means consenting to our personal limitations, our weaknesses, our powerlessness, this or that situation that life imposes on us, and so on. we find it difficult to do this, because we feel a natural revulsion for situations we cannot control. but the fact is that the situations that really make us grow are precisely those we do not control.

images from today's ultrasound

2011-09-22T13:01:00.000-04:00

everything is good. fluid is good. size is 58th percentile at 4.2
pounds.
i took all the kids(everyone but mary jane- she saw him at 13 and 16
wks). some of the older kids have asked questions about the health of
"dolphin" so I felt it necessary to have them all come and have a look-
see to allay their worries.
and he is head down- which is nice. for the past four weeks he ha
been head up- kicking my cervix. after a few hand stands in the pool
monday night i felt his kicks higher up and my ribs didn't feel so
tender. so- hopefully he'll stay put.

personal choices without handwriting on the wall

2011-09-05T18:49:00.003-04:00

during jedi's birth chris and i had to make decisions without alot of information. we had to make decisions without a clear and similar trailblazer ahead of us.
on the "living with trisomy" site there are alot of great people and ALOT of great information. BUT.
every child with trisomy is different. every symptom of the disease that is collected and stacked against the little one is so unique both in the combination and the severity. so it was difficult to decide alot of things. they don't exactly publish a "what to expect when you are expecting a trisomy blessing" book.
decisions like...
- what's the best way to deliver? what do we look for in a care provider?
- should we sign a DNR?
- what further tests should we have run?
- should we get an amnio?
- when he is born how aggresive should we fight to help our little guy live?
- should we intubate?
- should we do lasix?
- should we risk him dying in an mri machine just to see how his brain is?

i could go on. and there is no one you can really ask. and if you ask anyone with personal experience they can really only tell you what they did with what they had(which is probably alot different than what you'll be given).

when we found out that jedi had holoprosencephaly and i posted on facebook about it several people chimed in saying "oh, i know a kid with that and he's 9!" and when we found out that jedidiah had tetrology of fallot and i posted that on facebook i heard that "sean white had that when he was born". and i wanted to say- "well, that's just a TINY sliver of the pie- there is so much else going on affecting multiple systems."

the very BEST advice i got when pregnant with jedidiah was from tracy winsor from "be not afraid". she is so great and sensitive when dealing with mothers who are carrying a baby given a poor prenatal diagnosis. one night at almost 11 pm i was pacing in front of my house with her on the phone in charlotte- i asked her "tracy, how will i know what to do? how will i know how hard to fight?"
and she said, "you'll know when you hold him. if he opens his eyes. if he cries. if he fights, you fight."
and i took that visualization to bed with me- every night for weeks. and she was right. i knew. those first few moments were doubtful. he wasn't breathing. he was getting darker and darker. and then he opened his eyes and started crying. and we knew he was a fighter. we knew that we owed him tests to find out more on how to help him. we knew that not deciding before birth was the best decision we could've made. leaving it open for God to decide and for us to follow.

and keeping myself open to God's will. had i felt called to an induction- i would've done it. had i felt called to an amnio- i would have done it. but i really felt called to leave it all up to Him. and no one can tell you God's will- you have to dig deep- find time for silence to listen and turn it over to Him.

12 hour growth spurt

2011-08-25T08:02:00.000-04:00

who else thinks this growth spurt is kind of ridiculous big?
first pic is from yesterday morning. i am 26 weeks and a few days.
second pic is from last night?!?!? yes, last night.
i could. not. stop. eating. yesterday.
wonder what is going on... wish i had a womb-cam.
in other news i have my first appointment with the practice who is
going to deliver "dolphin" later today. and yesterday i found myself
really excited for the first time in a LONG time about an appointment!
with jedidiah i always felt apprehensive- kind of a protective stance
before appointments. "what are we going to learn this time?". ioften
couldn't sleep the night before- and them i felt tight all day until i
was through.
and even with this baby. the first appointment when we got an
ultrasound too was a very anxious time for me. and even after the
ultrasound showed nothing wrong i still didn't look forward to
appointments. i think i just hated the practice. they made me feel
like a number, someone to bill. i prayed and prayed to know who i
should deliver with. i couldnt go back to dr.tate- he is such a
skilled doctor and so caring too. but he only delivers at emory
midtown and i couldn't go back there and see some of those nurses.
then after going back and reading frances' birth story i recalled how
much my midwife stood by me- she delivers at a different hospital-
which importantly isn't emory midtown. and i feel peace with this
decision. a deep peace and an excitement that i haven't felt in a
long time.

iPieta app and today's readings: faith

2011-08-07T22:52:00.003-04:00

i was scrolling through my iPieta app last week, showing father kevin what all it has to offer when he stopped me in the "veritas" section.
there are lots of sections located under the veritas tab- catechisms including baltimore, imitation of christ, writings of saints, the summa, ecumenical councils, papal writings, and much more. in one section called "bible commentaries" he pointed out something called "catena aurea". it's a bible commentary that first has the bible excerpt- but then after that it has what jerome, augustine, john chrysostum, hilary, raban, bede, theophylact, and many other early church fathers had to say about the reading. he said it is a great tool for a new priest to use when writing homilies. i think it's a great tool to use period.

so- on to today's reading and the relevance it has in my life right now(especially since saint jerome helped me out some)
today's reading was matthew 14:22-33 in which Jesus walks across the wind tossed water toward the disciples in the boat. jerome said that "while the Lord tarries in the top of the mountain, straightway a wind arises contrary to them, and stirs up the sea, and the disciples are in imminent peril of shipwreck, which continues till Jesus comes...The military guards and watches are divided into portions of three hours each. when then he(matthew) says that the Lord came to them in the fourth watch, this shews that they had been in danger the whole night."
and john chrysostum says: "teaching them not to seek a speedy riddance of coming evil, but to bear manfully such things as befall them."

while i was pregnant with jedidiah God's presence and strength and grace were tangible, palpable. but the days after and since jedidiah's death have been a struggle. a test.

the imitation of Christ says "does it matter much, if at the coming of grace, you are cheerful and devout? this is an hour desired by all, for he whom the grace of God sustains travels easily enough. what wonder if he feel no burden when borne up by the Almighty and led on by the Supreme Guide! For we are always glad to have something to comfort us, and only with difficulty does a man divest himself of self."

so i keep trying to have faith past what is my experience now. have faith that God still cares. He is there on the mountain while i am in the boat. not because He doesn't care. but because he wants me to "man up" -to wean me from the teat of constant consolation and see if i can stand on my own.

i'm such a baby. i want the consolation. i want the affirmation of grace within me. but just because i don't feel it does that mean it's not there? and since it's not tangible or palpible does that mean God thinks i'm ready to be weaned? i think i need to trust that decision and go with it.

a new trisomy family needs prayers now

2011-08-03T21:58:00.002-04:00

they live here in atlanta and are about 19 weeks along with a baby girl who has been diagnosed with trisomy. i have added their blog to my blog list on the left. they are such a precious family and just by reading her blog i have found that she has had alot of the same feelings i had during my pregnancy with jedidiah. the mom's name is katie and i have a really strong feeling she'll be needing your prayers.

raising kids

2011-08-02T07:00:00.000-04:00

chris was clicking around the channels last night and on one channel
there flashed a preacher who asked his congregation, "have you raised
children?"
and i said to chris, "we haven't raised a child.". thinking how funny
it was that we were currently raising 6 and have been at it for years
it seems. but we have yet to successfully raise a child to the age of
18. although we are getting close. henry will be 12 on thursday!
he looked at me and said, "we have raised one."
and i thought dumbly that he was talking about henry.
"what?!?! he'll only be 12 he's hardly a man!"
"we have one kid that my job is complete with. it depends on your
definition of what it means to 'successfully raise a child' is."
have i mentioned that i love chris?

trisomy adoption

2011-07-30T18:32:00.000-04:00

children who have trisomy 13 are waiting to be loved. waiting to be adopted.

For those interested in Adopting a Trisomy 13, there are several on this page.
https://www.facebook.com/pages/Trisomy-1318-Adoption/226252684078396

if you are TTC- trying to conceive or just a woman of birthing age

2011-07-20T16:13:00.002-04:00

i guess this is kind of a PSA of sorts.
but in anatomy and physiology last semester we learned about the divisions that the human egg undergoes. as well as the divisions of the sperm.
and then this information i learned in a book called "fertility, cycles, and nutrition" : that 95% of trisomies are because of problems arising during egg cell division(the mom).
AND further- proper amounts of folic acid are needed for healthy egg cell division.

so ladies, put that ALL together and it comes out as this...

birth defects like downs syndrome, trisomy 18, and trisomy 13 arise long before conception. they arise as your body busily goes about making eggs. we shouldn't begin to take prenatal vitamins when we find out we are pregnant. we should be taking them everyday between marriage and menopause, switching to a menopausal supplement after that.

i didn't want to bring this up at first because when i first put it together i dealt with some guilt- knowing i was the one who possibly caused jedidiah's genetic defect. i didn't want any other tri moms to feel guilty. but i realized that it was just short dark moment, and that it shouldn't stop me from possibly preventing future babies' problems.

this cake

2011-07-20T09:26:00.002-04:00

fellow ICANer, robin, sent this image to me this morning.
i thought it was cute.

20 weeks

2011-07-14T09:56:00.000-04:00

wow- what a difference a few weeks makes! things are going good.
i was scheduled for a 20 ultrasound but canceled the appointment
because i didn't feel the need- AND- i am
not satisfied with my careprovider so i am shopping for another.
he is kicking alot and

changing the label- trisomy awareness video

2011-07-12T09:52:00.000-04:00

a dream this morning

2011-06-14T09:18:00.001-04:00

i had a dream that we had our baby boy("dolphin") as the girls call him. it was an uneventful birth. we actually went home without him*. the home we were in at the time was a LARGE rambling house owned by my sister-in-law. everyone was living there. we needed to furnish our room so i went to this store that was like like a homoginized home depot/walmart/linens and things. i bought new underwear, a bathmat, some sheets, and a ceiling fan. when we arrived back at the house i saw my sister-in-law's boyfriend walking around the pool- it was FULL of kids. like i said, everyone lived there. so we drove around to the front yard where they had just built a pool and that pool was full too! we pulled up short of the pool and all of the sudden i got this terrible feeling in my gut. i needed to find my mom. and i wanted chris too.
i ran around the house and found chris. together, we then found mom- she was in kevin's room and he was taking a nap. at the foot of his bed kids were playing cards. regina was talking on the phone sitting next to his bed. i wanted privacy but more than that i wanted to ask a burning question.
"what's going on with our baby?"
"he passed a clot this morning." she said and looked away.
"and?"
"well, there was part of his outside skin that didn't form on the outside, it stayed inside."
while she said this the ridge of her nose started turning black and melting down her face. she turned to me and said, "the skin came out with the clot and... and... and he died."
i've gone to sleep crying quite a few times. i've never woken up crying like i did this morning. well, actually sobbing was more of what it was like.
we got an ultrasound on this kid. the lady said that nothing is wrong as far as she can see. we didn't agree to any more tests- because we knew that tests don't serve to take away ALL your worry. you're still going to worry. you're still going to doubt they did the test right. you'll doubt they turned over all the stones.
chris held me. i listened to his heart but i couldn't go back to sleep. everytime i closed my eyes i went back to that place. part of me wanted to find a mirror back in my dream. convinced that if i looked in it i i wouldn't see myself. convinced that in my dream i was someone else.

frankie's little flower moment

2011-06-13T13:54:00.000-04:00

yesterday i had all my sister's kids over here for the day. so that would be 13 kids running around. in the evening, after a dinner that i botched(ran out of flour for the dumplings so it was more like chicken 'n cornbread bc i used cornmeal), frankie started throwing a fit. i took her upstairs to our quiet room and was firm and calm. we weren't going downstairs until we read a couple books. my hope was that she would fall into much needed sleep, but calming her down was also a priority. she kept trying to negotiate. her little 2 year old mind making me bite my lip to keep from laughing.
"NOOOOO!!!! i don't WANT to read a book!"
then later
"we can go downstairs AFTER we read a book. ok mommy?"
"yes. after we read a book."
"NOOOOOO!!! mommy! AFTER we read a book we can go downstairs."
"sure, after we read a book we can go downstairs."
she kept going around in circles not agreeing with me but using words that were in agreement.
i am not sure how the subject got to jedidiah but she said, "dedidiah(that's how she says his name) died after we went to church."
"we brought jedidiah to church after he died- yes."
"i don't want dedidiah to die"
"yeah i don't either"
"i want you to hold him in your tummy again."
"and I want you to hold him in YOUR arms again."
she smiled.
i said, "guess who is holding him now."
she looked at me.
i said, "mama mary."
"NOOOO!!!(she was still a little bit in her fit) i don't WANT her to hold dedidiah!!"
"ok, well mother teresa can hold him."
"NOOOO!!! dedidiah is a BOY!"
"ok, so Jesus can hold him?"
"yeah"- she smiled.
then she said "where is daddy?"
"he is sitting in his chair."
"i want him to die so he can go hold dedidiah."
that reminded me of the little flower- how she wished her mother would die so she could go to heaven. i thought it was so touching- she wanted someone she knew jedidiah loved and knew here to hold him.
all this talking about jedidiah is new for her. she couldn't really put into words her thoughts back when he was alive and even when he died. but i knew she was storing it away- and would bring it back out when understanding and knowledge merged.

one year anniversary of naming of jedi

2011-05-27T18:33:00.001-04:00

on the way to huntsville last memorial day i was knitting the
beginnings of jedi's blue blanket. we didn't know what gender he
was. in fact the wednesday after memorial day was to be our first
ultrasound- the ultrasound that first let us know everything was not
ok. on our way to huntsville we talked over names. i already had the
middle name picked out. i wanted joseph and i was waiting for chris
to pick a nice first name. chris said he liked the name jed. so i
said "what about jedidiah?". i remembered seeing that name on bumper
stickers in san diego when we lived there. so it was decided. if he
was a girl we were going to go with charlotte rose.

it's hard to remember what life was like before jedi had something
wrong. how his future extended before us. how we dreamed of him
growing up with the kids- learning to ride a bike, dig for worms, and
climb trees.
my first ultrasound with dolphin (the name given the current womb baby
by his older sister mary jane) i sat on the table and looked up at the
tv screen on the wall. it took me back to the peri's office and all
those "abnormal" boxes the ultrasound tech kept checking with jedi.
there was about one or two boxes she checked "normal".
although i never cried during any of jedi's ultrasound i burst out
crying there on the table with dolphin- and they hadn't even turned on
the machine!
chris grabbed me some tissues. ultrasounds now no longer mean the
same thing. they used to be all cute and "we get to peek in at our
baby this thursday!" and "we're going to find out what gender our baby
is tomorrow!"
no, now when i hear about someone getting an ultrasound i kind of hold
my breath. i pray that whatever learned in that room- good or bad-
comes with the adequate graces.

peace,
elizabeth

st. jedidiah, pray for us!
http://trisomyjourney.blogspot.com

baby in a bubble widget

2011-05-25T13:11:00.002-04:00

i'm not sure why the baby floating in the bubble on the top left looks like a 6 weeker. this baby is almost 14 weeks and has ALOT more detail than a 6 weeker.
i'll try to upload some ultrasound pics later.

a baby

2011-05-19T17:29:00.000-04:00

and it's a boy!
and he's due right after that anniversary of jedi's death- so i come
to you all, yet again- begging your prayers. i still and navigating
grief. i don't LOVE the term rainbow baby. i don't like how people
think of other children purely as a bandaid or a salve. i REALLY want
this baby to stand on his own- be his own person, but right now there
is still a shadow and pretty big shoes to fill. will i EVER see this
baby as he is on his own? or will there be a nagging comparison?
will i find pure joy in being able to nurse and sling this baby-
without the shadow of loss in not ever being able to do that for and
with jedi? i am not sure. all this is so new to me.

six months

2011-05-18T14:57:00.001-04:00

today is jedidiah's hevenly half birthday. we went to mass and
grandma and grandpa peek took us to chick-fil-a afterwards. tonight
we will have cake.
i think the date that has been on my mind the most is the date that
changed our lives. coming up- june 1st. the day of our first
ultrasound.

peace,
elizabeth

st. jedidiah, pray for us!
http://trisomyjourney.blogspot.com

my first dream

2011-04-08T09:25:00.000-04:00

i had a dream about jedi last night. my first dream ever. i was
holding him kind of on my hip. and he was able to hold his head up
and look about. it was a holiday- Christmas i think -and i was busy
and running around. i stopped to think of when i last fed him-and
that he must be hungry. i looked at him and felt a pang of guilt-
forgeting to feed him.
i remember one of my last thoughts before i went to sleep last night
was remembering how I used to have to set an alarm for feedings. he
very rarely complained and i just wanted to save him the effort- even
small efforts were very taxing.
what a gift! thank you God for a little taste of heaven!

from italy

2011-03-24T15:35:00.001-04:00

our trip to italy was such a renewing time. it was hard to leave te
kids for so long- but they'll be reaping the rewards of having parents
who love each other and are willing to take time for each other. i
loved being able to simply walk down the old cobblestone streets and
hold his hand. i loved experiencing new and different, familiar and
tasty culinary delights at quiet meals with him. i loved the
strolling through museums, skiing the dolomites, and cruising the
autostrada-all with him.
here's us under michelangelo's duomo at san pietro's.
click here to link to the blog about our italian trip.

shielding children from suffering

2011-02-24T23:01:00.001-05:00

"Even suffering is part of the truth of our life. Thus, trying to shield the youngest from every difficulty and experience of suffering, we risk creating, despite our good intentions, fragile persons of little generosity: The capacity to love, in fact, corresponds to the capacity to suffer, and to suffer together."

--- Pope Benedict XVI

nov 18th feast day

2011-02-23T11:49:00.003-05:00

the day of jedi's death is the feast day of st. rose phillipine duchesne. the reason i know this is because a sweet young lady has asked me to be her confirmation sponsor- the name she picked was st. rose duchesne since her feast day was jedi's death. so my mom, in her classic fashion, has crossed the world using phone lines and stamps to find more information about this saint. i really think the internet would blow her mind but she insists on doing things the old fashioned way.
so i got a letter from mom today- a loose leaf wide ruled piece of paper with a quote from st. rose phillipine duchesne written in my mom's beautiful nun-taught cursive.

"the world was saved by the Cross. those who spread teh gospel preached only the cross. and solid virtues flourish only in its shadow. the necessity of carrying the cross and of living as a follower of Jesus Christ in toil and tears prevents the return of so many brothers who have wandered from the truth. we do not want a religion that is sad, they say, or one that requires suffering; we want pleasures. they want paradise without paying the price of suffering, but can they give lie to the gospel?"

or deny humanity? the mere fact is- life is hard. i will never understand the christian's who believe in "prosperity gospel"- the message that if you are a true follower, then God will bless you abundantly with good things and riches and nothing but ease. and should you, for example, fall ill with cancer that would show the world that you were not a true follower- that God had turned his back on you.
the whole things seems SO UTTERLY illogical. suffering is humanity. God's only son wasn't spared suffering. as a matter of fact He was given a huge piece of suffering pie- a bigger piece than most everyone i know- AND, He didn't even deserve it!
so skating through life- expecting no suffering- expecting God to come swooping down to smooth the way isn't a very christian belief. it's definitely not the message Christ preached.
i still sit in awe at the paradoxical lessons God is always teaching. it's odd that i find comfort when the cross is preached. such a prickly, uncomfortable, burdensome, unattractive message. but it's so comforting- we are ALL in this together. together with Christ.

running away

2011-02-13T21:49:00.002-05:00

i wonder if mother teresa ever wished she could run away. i bet not.
i do sometimes. the only thing that stops me is the deep feeling inside that it won't solve anything. it won't take the pain away. it will always find me. it seems that the only place i can keep the pain away for any length of time is to be busy beyond my ability.
it's hard to have patience for kids who freak out about a cup being slightly too far away at the table. or kids that freak out and cry when they find out that the last stamp was used without their knowing.
i just want to say- "it's my turn. it's my turn to cry- to freak out and blubber on about things not being the way i want them to be"
sometimes i wonder how much of their freaking out is because of jedidiah or collateral damage or because they are kids and kids freak out about things alot.
i'm hoping that our trip to italy satisfies my desire to run away. i don't like feeling this way.

white noise

2011-02-11T23:32:00.002-05:00

there was a time, right after jedidiah had died, when we took the van to get cleaned at the automatic wash. towards the end of the wash when those loud jets were blowing on the car- i just wanted to stop, freeze there in the loudness- the noise all around me, blocking everything out.
i was reminded of that when i laid back in the hot tub at the gym. i propped my feet up on the seat and just floated there- my ears below the water, listening to the jets. i closed my eyes and then i could remember jedidiah. so clear was the memory. i watched him flex and bend his wrists the way he did when he was cold during diaper chages. i looked at his eyebrows raise as he tried to track something above his head. i remembered the weight of his tiny head in my hands. the soft feel of his skin, his cheek, his silky hair. it was so nice.
my day is constantly full of noise, action, 'to do' lists. i never really have time to sit and remember him. but i know i need to work that into my schedule.

the biggest struggle as of late

2011-02-10T16:55:00.003-05:00

what to do with my fertility?
every time my fertility comes around i am faced with thoughts that overwhelm.
another baby would feel like an inferior replacement right now. i know pregnancy is 9 months and i would have time to adjust to the prospect but i simply am not ready. just being fertile is a painful reminder. i had a baby three months ago! i shouldn't be fertile yet! but i am and why i am is why i am not ready to put my fertility to use. so we abstain during the fertile time- and wait for clearer thoughts. the thought of a baby stands on it's own- without thoughts of inferior replacement.
will that ever happen? will i ever think of pregnancy and childbirth the same again?
whenever i see a pregnant woman i don't have that joyful feeling inside me as much as i used to. i now see her and think how maybe she is carrying a secret burden that her body belies.

little reminders

2011-02-06T18:49:00.001-05:00

we were away all weekend- having a little family getaway to ski up in
the smoky mountains of tennessee. we went hiking this morning and got
on the road to come back in time for 5:30pm mass at st monica's. we
got to mass a little late- and look what was on the ceiling of the
narthex.
samantha pointed it out and mary jane belted out "it's jedidiah's
balloon!!!".
the matching balloon is now crumpled on the floor in my room but this
one was a nice little reminder.

protecting myself

2011-02-03T08:50:00.002-05:00

during jedi's pregnancy it began. i started cautioning the kids to "be careful", "get down from there", "don't skate so fast or you'll fall".
i kept thinking to myself- "i'm already on a cliff- a trip to the emergency room for a broken femur would push me over"
that attitude made the world "all about me". instead of fostering the kids sense of adventure and zeal for life, i was trying to push them into a more convenient shape. something that wouldn't burden me as much when i shouldered it.
this sentiment goes to levels deeper than "taming dare devil kids". it goes to other levels- not reaching out to help someone in need- not being open to God's call, the challenge of the spirit- not trusting that God will provide if i just say 'yes'.
my pastor, fr. jack has given some great homilies over the past few weeks. the one i'm referring to isn't posted on the link because it was a weekday mass homily.
i can't remember the exact words but it was something along the lines of not worrying so much about this or that detail. this world is passing- fleeting- so very temporary. and i am putting too much stock in all that is dust.
the ONE thing i need to think about is "what God wants me to do right NOW!"
i get so caught up in "what if" situations- economic and governmental collapse, invasion, slavery, poverty, war, famine. but when i think of fr. jack's words it doesn't bother me much anymore. what does God want me to do NOW?
get up and make breakfast. live. love. say yes.

yesterday's jedi hike

2011-01-25T14:07:00.003-05:00

we hiked to jedidiah's grave yesterday. in our hiking party we had all the kids, christina and her daughter marianna, aunt denny, uncle father kevin, and grandma&grandpa(in the golf cart).
we met up with a friend and her daughter from church.
it was a beautiful day with temps in the low 50s and not a cloud in the sky.
father kevin said mass and gave good homily focusing mark 3:22-30(the gospel of the day.

turn off the radio down on the left before watching the video.

a weekend to celebrate life

2011-01-23T14:52:00.000-05:00

right after the prolife march we headed to a neighborhood north of
atlanta and set up camp at a hotel with a nice pool and complimentary
breakfast.
it was neat to see all the jedidiah hoodies moving about the halls.
saturday morning we packed into a room for mass.
the last picture at the bottom is of my niece, nora, and a painting
she completed as a gift for me.

The prolife march

2011-01-21T15:59:00.000-05:00

it was so nice for my family to be together again for this cause.
especially touching was being able to walk with father kevin. it's
hard when i think of how temporary his r&r leave is.
i shared jedidiah's story with many people. and that made me warm,
despite the cold. the more people who know him- and know that life is
SO very beautiful, no matter how long it is, nor what is accomplished-
the easier the grief is.

several people expressed desire to order their own sweatshirt. email
me at Arendale(at)charter(dot)net. if you'd like one of your own.

another bed for jedi

2011-01-17T11:14:00.000-05:00

mary jane made another little bed for jedi. she makes one
periodically. it's usually when i am deep cleaning our bedroom.
today she gathered all te stuffed animals together and brought his
christmas stocking over and laid it beside his bed.
i poured mj and frankie a bath and began to put away his bed while
they were distracted with the water. the most touching part about his
bed was this angel doll i found, holding a baby.

uncle-father kevin is home!

2011-01-14T12:50:00.000-05:00

sharing memories

2011-01-14T12:49:00.000-05:00

gathered around his laptop, looking at pictures and telling stories.

a new year

2011-01-04T12:25:00.003-05:00

new year's eve was hard. i wasn't expecting it. i made it through christmas with only a brief period of tough grief only to be blindsided on new year's eve. chris and i sat watching the sparkly ball drop in times square on tv. the children were all asleep. i just began crying- out of the blue. it may have been something said by the announcer, i'm not sure. but i thought about how jedi's WHOLE life- from conception to death was held in 2010. how we are leaving 2010 behind and embracing all that is new and hopeful. 2011! but i wasn't so excited. i wanted to hold on to 2010 for a bit longer. i wasn't ready to let go. but let go i must. i feel like a donkey who can't be coaxed forward- digging in my heels, throwing my head back so i can keep remembering, keep living, keep inhaling jedi.

i'm in such a fog. i went to confession last night and i honestly didn't know what to say. i'm VERY far from perfect so i KNOW there was alot i could say. i have just been so numb and in a fog- i can't sit and be recollected. forget searching my day to find what i have done wrong, i can't even name one thing i have done right! so i just knelt there and mumbled and cried and sniffed- thankful for the screen between the priest and i. and he quoted scripture- paul- "in my weakness i am made strong". so beyond this fog, above it, the same God that gave me chris and the kids, that ensures i have oxygen to breathe and eyes to see, He is making me strong. i do not feel it at all. i don't feel the strength coming. but i must trust past the feelings- for feelings at times may be deceiving.

a diaper fit for a jedi

2011-01-03T21:11:00.000-05:00

another mom

2011-01-02T02:32:00.002-05:00

please pray for this girl.
i'm not sure if this is real, but if it is- i'm so sad that she's having to turn to yahoo answers for advice! it reminds me to be so very thankful for the gift(it is in fact a GIFT!) of faith and for the support of all my family and friends.

children's grief

2011-01-02T02:10:00.003-05:00

mary jane and frances talk about jedidiah every day- multiple times a day. they play with his bear. they see the balloon on the ceiling and ask "is that jedidiah's balloon?" (yes, it's still up there;).
i found it unsettling one night to witness the girls playing at funeral in my room. i was knitting and they had jedidiah's bear wrapped in a blanket. they called it "the box". they then took a rug and covered "the box" and said "now the box is under the ground". then they pulled the bear out and played some other game with it.
i thought, "how morbid!". but then, kids do that. they play to understand. the copycat mom and dad so that they can learn how to behave. but they are also very lighthearted beings. mary jane and frances' play reminded me of ring around the rosey. that song and it's origin is a testament to a child's view of grief. life happens- and then they turn it into a song and game.
this afternoon we went out as a family. it being naptime, frances naturally fell asleep. when we got to our destination i unbuckled her and was about to slip her onto my shoulder when she woke. she was wide eyed and alert so quickly, it shocked me.
"jedidiah's in heaven. jedidiah's in heaven. jedidiah's in heaven."
she repeated this over and over.
i asked, "did you see him?"
she smiled, "yes".
"did you hold him?"
she smiled bigger, "yes".
the children are helping me grieve just by grieving in their own unique way- we are all together on this journey.

birth and death

2010-12-28T14:28:00.004-05:00

i typed up the details of jedi's death awhile ago. i just needed to do it for myself. i've never experienced death first hand. and nobody really talks about it so i wasn't sure what to expect. i may post it- just because. because i don't think it should be taboo. i don't think it should be something you don't know anything about until it happens. it would have been beneficial- i think- to have known at least a little bit of what to expect.
as a mom- i prepare so in depth for birth. but when preparing for death there are almost no sources of information out there. other mom's blogs were beneficial to a point- but didn't really go into detail either.
i think what shocked me the most was the eerie similarity to birth. how your whole body is tingling and alert. you stand on the edge of the earth. looking forward, you see yourself and the new life you will lead. looking back you see your life, how it was- how very different it was.
i think if i were to change anything i'd change the mortuary we used. it felt so wrong handing jedi's body over to absolute strangers. i watched a pbs special on netflix called "a family undertaking" and i longed to have that as an option. chris wasn't comfortable with handling body preparation at home- but i think once we experienced how wrong dealing with strangers felt it gave us a different perspective.

baby's first Christmas

2010-12-23T18:09:00.000-05:00

i really wanted a stocking for jedi so we headed to the store. The
selection was vast but all of them weren't right. a few of the kids
wanted the baby blue "baby's first Christmas" stocking- and while that
sounds quaint but lofty I wasn't feeling it. we went to the yarn
section and got some yarn- chunky so it wouldn't take long:)
when it was finished mary jane wanted to buy toys and candy to fill it
with. i told her that he didn't have a body right now- that he flys
and floats like the wind. but i think i will let her pick out
something for him:)
samantha had a philips lightbulb of an idea. she proposed that we
write notes to jedi and since st nicholas lives in heaven he could
leave the toys and take the notes back up to jedi.
i think that is a fabulous idea.

pieta

2010-12-21T18:13:00.000-05:00

chris made me open an early Christmas present a few weeks ago. he
went and bought the two of us tickets to rome. he felt we needed
something to look forward to.
i am so excited to go- i've never needed a passport for a trip before.
there is one thing i want to see when i am there. michelangelo's
pieta. there is something so moving about the image of mary holding
her son's limp lifeless body. it touches me. sometimes instead of
cracking open my pieta prayer book i just stare at the picture on the
cover. i just think of her. how she must have suffered. the
catholic church calls her the coredemptrix- and i can totally
understand that now. how much of a role her suffering played-how much
of a role OUR suffering plays in the salvation of others. we are one
body. one body in Christ. our suffering is His.

another cs lewis quote- on photographs

2010-12-15T19:04:00.000-05:00

"it doesn't matter that all the photographs of H.(his deceased wife)
are bad. it doesn't matter-not much- if my memory of her is
imperfect. images, whether on paper or in the mind, are not important
for themselves. merely links. take a parallel from an infinitely
higher sphere. tomorrow morning a priest will give me a little round,
thin, cold, tasteless wafer. is it a disadvantage- is it not in some
ways an advantage- that it can't pretend the least resemblance to that
with which it unites me?
i need Christ, not something that resembles Him. i want H., not
something that is like her. a really good photograph might become in
the end a snare, a horror, and an obstacle."

cs lewis-
a grief considered

i highly suggest this book to anyone who has experienced the loss of a
loved one. only 76 pages- i wish it were longer, but it is so good
just as it is.

forgotten stash of videos

2010-12-14T18:29:00.003-05:00

i was feeling down- sad because i felt that we should have taken more video of him- when i found a forgotten stash, taken by my sister christina's iphone. if you are expecting a baby that won't live long- have someone take as much video as possible! i sit and watch these videos over and over sometimes. and having videos of different situations is nice.

his cleft lip left mouth breathing as his only option. so his mouth would become dry quickly. if left dry for too long, ulcers would form. so we would routinely sponge some water onto his lips. sometimes he would open his mouth really big and then clamp down on the sponge- the result was a big gulp of water! his eyes would widen and you could tell he liked it.

the burial

2010-12-13T17:06:00.002-05:00

jedi's coffin was made of pine wood by my dear friend maryann marshall's husband, joe. he did such a beautiful job- i hated to mar the work with crayons and markers but i felt that it would be a good theraputic step to have all the kids write messages of love on the coffin. the cousins stepped in and it was so good for me to see them all huddled together- to read their messages- he was their cousin. they accepted him without a blink. he was one of them. it will be a memory that i cherish for a long long time.

i love this picture

2010-12-11T23:37:00.002-05:00

this picture really sums up the past few months- i really feel like we've leaned on each other so much and that has brought us closer.

the joy and the pain

2010-12-11T19:06:00.003-05:00

i haven't blogged very much recently. i've thought about why and agonized over it.
on one hand i need you all's prayers.
on the other, i don't want to scare anyone.
the grief i'm feeling can be overwhelming at times. overwhelming-and nasty- and messy- and i'm scared that if i blog openly about it i may cause a future mom to make a decision she may forever regret.
i think my 8 year old son max could sum it up perfectly.
we were sharing thoughts about the first joyful mystery. my thought was- "i bet mary was scared. i mean, gabriel said 'be not afraid'. why did he say that? she must have looked scared. she must have been confused. but the important part is- through her fright and confusion- she said 'yes'- 'be it done to me according to thy word'."
then i told them, "daddy and i were scared. and confused. but we said yes. let's pray for women out there- women who are scared and confused and want to say yes but feel like they can't."
then max said, "but if they said 'no' they would just have the sadness and not have the good times."
amen max, amen.
thank you God- for sheltering me through so i could experience the good times.
thank you for my parents- who raised me to never ask "why me?" and always ask "why NOT me?"

quote from cs lewis

2010-12-06T12:20:00.000-05:00

susan mailed me a book a few days-
i love cs lewis- and this book makes me feel like he is my companion
on this journey. written after he lost his wife- it is called "a
grief observed"
This quote particularly struck me-

"if a mother is mourning not for what she has lost but for what her
dead child has lost, it is a comfort to believe that the child has not
lost the end for which he was created. and it is a comfort to believe
that she herself, in losing her chief or only natural happiness, has
not lost a greater thing, that she may still hope to 'glorify God and
enjoy Him forever'. a comfort to the God-aimed, eternal spirit within
her. but not to her motherhood. the specifically maternal happiness
must be written off. never, in any place or time, will she have her
son on her knees, or bathe him, or tell him a story, or plan for his
future, or see her grandchild."

another part of the human dilemma-
my maternal humanity stuggles with the soul within.

2010-12-05T15:25:00.002-05:00

2010-12-05T15:25:00.001-05:00

one month birthday

2010-12-05T15:25:00.000-05:00

we went to visit jedi's grave today to remember him.
the mile hike through the nature preserve was just what we needed to
prepare ourselves. we talked and walked. the older kids ran and
collected sticks, rocks, leaves.
it was cold and windy but our hearts were warm- being together and
remembering his sweetness.

the balloon on the ceiling

2010-12-04T22:42:00.000-05:00

it's there every morning i wake up. it came free from it's string
soon after we brought jedi home an has been on the ceiling since. he
used to like to look at it up there. part of me wants to retrieve it
and take it outside and set it free. but with all the vanishing
evidence of jedi- i kind of want to keep it around.
wednesday night i met up with the father of a newborn that was in need
of milk. i handed him a bag full of litle frozen milk packets. i
didn't think it would be hard- and it wasn't, but it was another
physical reminder of our bond- gone. i got the sweetest message from
the baby's mother- along with a picture- it lifted my spirits to be
sure.

i am trying to get back in shape. but part of me feels guilty for
trying to burn off his babyweight. this is a whole new world of
mother's guilt that i am feeling.
if i am having a good day and something makes me laugh- i feel bad for
having a good day.
these thoughts are only there for a split second before i banish them-
but they still occur often enough.

essential oil massage

2010-12-03T15:27:00.000-05:00

scroll down and pause the ipod player- you HAVE to hear the cute little noise he makes when i stroke his forearm:)
i love this video! my sister, regina, shared it on youtube and i had to post it for you all.
the essential oil blend that we used as a belly rub when he was in utero was made by my good friend maryann marshall. she specially formulated the blend to be beneficial for optimal DNA development. the scent is all over his blankets and i made sure to store them in big ziploc bags so that his scent remains strong on them.

~ You wouldn't cry for me today ~ by mandisa

2010-12-01T15:00:00.000-05:00

denise, thank you for sharing this song and slideshow with us. the kids really loved it! they were all saying "i want to go there!!!"

i asked God for...

2010-11-30T19:18:00.000-05:00

"I asked God for strength that I might achieve. I was made weak that I might learn humbly to obey. I asked for health that I might do greater things. I was given infirmity that I might do better things. I asked for riches that I might be happy. I was given poverty that I might be wise. I asked for power that I might have the praise of men. I was given weakness that I might feel the need of God. I asked for all things that I might enjoy life. I was given life that I might enjoy all things. I got nothing that I asked for, but everything I hoped for. Almost despite myself, my unspoken prayers were answered. I am, among all men, most richly blessed."

-unknown

i found this poem on an old folded piece of paper. my oldest sister, a carmelite nun in south dakota, sent it to me a long while ago- perhaps when it didn't hold as much meaning for me. i read it during my last hours of labor. it was nice to feel her so close when she is so far away.

what attracts me

2010-11-30T15:48:00.003-05:00

i look at pictures of him every day. it helps that i have a bunch on my phone's memory. i find my eye always being pulled first to his eyes. his soleful eyes. i can read alot in my kids' eyes. joy, sorrow, comfort, illness, health, pain, fatigue.
after his eyes i am drawn to his mouth and nose. then to his hands, particularly his pointer fingers. then the lay of his legs. then to his right foot. these are all the things that made jedi jedi. his special little attributes- i am drawn to them- they are magnetic to me.
they are the parts of him that endeared me to him. that made me so want to fight for him. that made me want to comfort him and hold him.
my body has finished the bulk of healing. my womb is whole, my breasts have stopped giving milk. but my mind is still stuck in a time two weeks ago. in a rare moment of quiet here at the house my mind immediately zips back to that time and i'm caught off guard with feelings and memories that bring a lump into my throat that is too big to swallow back down.
i miss him- and while it's a messy sea of sorrow i would not trade any of it for a life without knowing him. every little and big inconvenience of the pregnancy and post partum period has been so worth knowing him for those 13 days.

midnight feed

2010-11-29T18:17:00.002-05:00

the world has turned and left me here

2010-11-29T17:07:00.003-05:00

the world has turned and left me here
just where i was before you appeared
and in your place an empty space
has filled the void behind my face
-weezer

life seems to have just picked up where we left off. school, work, trash day, laundry, shopping, etc. my breasts have stopped giving milk. my womb is finishing healing. chris went back to work. christina returned home with her family. the kids are my main distraction. but if given any time to myself with idol hands i just get caught up in memories. my arms ache to hold not just any baby but him.
it has only been three weeks and three day since he was born and it feels like to the outside world it never even happened. i packed away all the pump stuff, all of his feeding tube stuff, all the sponges we used to moisten his mouth. proof of his physical presence is slowly being put on a shelf.
grief is so strange. sometimes i descend into this pit of day dreaming and wish the kids would parent themselves and leave me to my dreaming. sometimes i feel good and merry and we are all laughing and i look at myself and think "why am i having a good time? my son died less than two weeks ago." but i know that thought only can come from an evil dark place so i don't entertain that for very long. sometimes i just want to stay in bed.
sometimes i am scared to have another baby because i am scared that i will react negatively toward the baby- because it's not jedi.
i went for a long walk saturday night. i startled a bird in the path. it was dark and the bird flew out and landed on the street. a car came and as the bird took flight it hit the front bumper and landed in the grass not far from me. it flapped and flopped and soon was dead. i felt so terrible. i felt it was my fault. and it was the second time in less than two weeks that i had watched one of God's creatures die.

video- jedi one day old

2010-11-29T11:00:00.003-05:00

an attitude of gratitude

2010-11-25T20:01:00.000-05:00

this morning i was able to attend mass and thank God for jedi's short
but wonderful life.
now i thank all of you- my prayer warriors. you knocked and knocked
and our Lord listened.
i am pretty sure jedi is thankful for your prayers as well- so
thankful that he's ready to pay back with interest. don't be afraid
to cash that in. i'm not shy about asking him to go before the throne
of God on my behalf. i ask multiple times a day.

a week ago

2010-11-24T21:48:00.003-05:00

at around nine i sat in a steamy bathroom with little jedi. he began sounding congested at dinner and i thought some steam treatment would help him out. after 20 minutes of steam and a quick diaper change i brought him downstairs to be warmed up by daddy. i then headed back upstairs to pump. i chastised myself because it had been 5 hours since my last pump session and i knew that my milk production would suffer if i wasn't pumping often enough. i made a mental promise to myself and jedi that i would pump every two hours the next day and that would surely get us back on track. the day was wrapping up and i wasn't ready for it end. the kids were sleepy- all except frances who just woke up from a two hour nap- from 7-9 pm. i had wanted to say a family rosary with them all cozy in their beds, but they needed to get to sleep and i still had alot to do.
i had wished that i brought jedi upstairs with me, but he needed to be with chris- keeping warm. his temp earlier when the hospice nurse came over was 94 degrees under his armpit. she tried to comfort me by telling me i needed to add a degree. i still didn't feel good about it. i felt like time was rapidly ticking away and i was moving slow as a tortoise. i drew up three 27 mL syringes of milk for his night feeds. i measured, bagged, and labeled the remaining milk and put it in the freezer. it was about 10:30 or 10:45 before i headed back downstairs. i laid his midnight syringe next to chris and sat on the couch to watch whatever chris had on the tv. i complained to chris about how everything takes forever. the pumping, the washing, the measuring, the storing. i whined a desire to simply breastfeed my son. and i was tired.
a little before midnight jedi made a weird noise. his breathing sounded like a "meow". i got up from the couch and was over by chris lifting jedi from his arms. i sat on the ground with him and felt a stabbing in my heart. i knew this was it. i tried to suction jedi. i got alot of mucus up. some of it was pinkish brown. chris and i sat on the couch together with jedi. franky watched us cry and hold him. she began to worry- hugging me and kissing me. chris made her a snack of granola and yogurt. we talked about possibly needing morphine. chris got the hospice notebook out- but we decided against calling anyone in. we didn't see any signs of him being in pain and we didn't want strangers milling about during this time.
i wanted desperately to go upstairs to our room- all of us. before we headed upstairs i took jedi's feeding tube out. the optomistic side of me figured that if it was just congestion i could always replace it before three. there was no way he was going to get his midnight meal- his breathing was too labored. but as the feeding tube came up, it brought a good amount of fluid up with it. i placed my hand on his chest and pressed very slightly, and more fluid came up. his breathing improved immediately- but only for a little while. i looked at his face without the breathing tube- so sweet and innocent. i wanted to take a picture. but every picture was no good- out of focus, bad lighting. his eyes were glittering. he looked at me. my love just poured out all over him. i wanted to take his place.
i held him close and headed upstairs. chris followed, bringing franky. i placed jedi on his sheepskin- propped up because he always breathed better that way. i laid my head next to his, kissing his cheek where the feeding tube used to be taped.
franky crawled up on the bed- on my side farther from jedi. i held her with one arm. chris laid on jedi's right, i lay on his left. chris switched off the lamp. franky was asleep in five minutes. i transplanted her to the bed on the floor and came back to be with jedi and chris. i slipped my hand under his blanket and held his foot. i loved holding his rocker foot as he slept.
i closed my eyes and listened to him breathe. i knew without asking that chris lay awake as well. i could hear gurgling in his throat. it seemed to get closer and closer, rising up and up. his breaths came farther apart. in the dark i began to say the hail mary quietly inside. the redundancy of the last lines of the prayer didn't escape me. chris got up resignedly and turned the lamp on. we talked to him-encouraging him to go- to not be the fighter anymore. we professed our love. we cried. we held our breath. he continued to fight. i became aware that touching and stroking him just stimulated him too much- just kept him tied to the earth and struggling. i knew where he was going and what was awaiting him so reluctantly i pulled my hand away. i didn't want to draw it out for him. there were so many times when we thought he was gone, then he would gasp and breathe with gurgles again. once during a long pause i thought he was gone and i reached out to touch him, he gasped and i cried. i felt so bad for startling him.
after the longest pause, we knew he had left us. i laid next to him and cried. i looked at the clock and it was close to after two. chris asked me if we should get the kids up. i told him to let them sleep. they would have time to mourn in the morning. chris switched off the lamp and went to the bathroom to take a shower. i could hear his sobs from the bedroom. on my back i lay looking at the ceiling and talking to jedi. where before death i wasn't sure he could hear me, now i knew without a doubt that his hearing was perfect. so perfect i didn't need to talk.
i thought- "jedi, do you hear your dad in there? ask God to shower peace down on his soul." and that is how his intercession for our family began and still continues to this day.
st. jedi, pray for us!

going shopping

2010-11-23T18:46:00.002-05:00

on the way home from mass this morning i had to stop and get a few things for the house. i am still receiving meals from gracious people- so thankfully i didn't have to buy LOTS of groceries, just some stuff for the house. the publix by our house knows us. they know my kids. we know quite a few of their employees by name. but they don't know me-know me. so one day they see me shopping pregnant, and the next they'll see me not pregnant. they've seen me like this twice before and have gotten used to me wearing my newborns in slings- so i can almost hear them say "oh! you had your baby! ..... where is he?"
ugh!
so to avoid this scenario i went shopping at the new kroger next door. i felt a pang of guilt. like i was being unfaithful. but i rationalized that i was just doing this for the time being- i can't run away from this forever. i told chris of my kroger shopping plan on saturday and he thought it a good idea. he told me he was going to look for a new job because he didn't want to have to go back and explain to a bunch of people. then he calmed me down by saying he wasn't serious about another job- he likes his current job.
he said "you don't have to face everything all at once. just take your time."
good man.

cuteness

2010-11-23T12:32:00.000-05:00

samantha: did jedi know how cute he was?
aunt christina: yes
samantha: he looked in a mirror?!?!
aunt christina: no. he knew because he saw us looking and smiling at
him.

fr. joseph's homily

2010-11-21T23:51:00.002-05:00

so many people were touched by my brother's homily at jedi's funeral mass.
thanks to dan doherty for recording it.
he also recorded the complete mass.

the existence of God

2010-11-21T18:33:00.003-05:00

many of you know that i have been in school during my pregnancy. i am collecting credits in pre-requisites for nursing school. i hope to ultimately become a midwife. this semester i am taking anatomy&physiology. we have touched on many aspects of biology over the last few months. so while i was learning from prenatal ultrasound and various specialists- not to mention google, i was also learning via lecture and textbook.
when we learned about cellular mitosis- how cells divide and reproduce themselves- my faith in God obtained a clear confirmation. the cell- so small. it holds all the mapping and information it needs to carry out it's purpose and reproduce itself. during mitosis the strands of DNA are photocopied and the copies go live in the new cell. at this pivotal moment- if the very slightest most intricate detail gets screwed up- then everything goes haywire. cancer, leukemia, mitochondrial disease, trisomy.
life is SO very fragile. and we're supposed to believe that somehow by some miraculous series of events life just came to be? the big bang became single celled organisms, became tadpoles, became fish, became amphibians, became apes, became us????
so half of jedi's cells had three of the 18th chromosome. and he lived for 13 wonderful days. and God is the only one who could have thought life into existence. there simply is no other explanation. no other way. there is divinity at work.

jedi's journey

2010-11-21T09:40:00.001-05:00

this slide show was put together by my nephew, kolbe.
thanks kolbe!

the most painful and the most joyful

2010-11-21T00:58:00.002-05:00

is the scent of him. when i returned home thursday evening after
being away all day, i saw his sheepskin and i embraced it. i was not
prepared for the powerful effect the lingering scent of him had over
me. i barely finished inhaling when my body began shaking with sobs
so strong and fierce. only after a few seconds could i no longer
smell it because my nose was stuffed.
and now, whenever i walk past the sheepskin in our room i take a big
breath in. i know it's going to be painful- but i just can't not
smell it.
the vividness of memory that his scent evokes is just too good not to
experience. i'm scared that over time his memory will become less
clear, harder to summon.

the medical mindset- you are your child's best advocate

2010-11-21T00:17:00.001-05:00

you may even be your child's ONLY advocate.
i will start this post by saying that i received great care at emory.
the staff was very helpful- always mindful of my needs, often before i
voiced them. for that i am grateful.
the basic humanitarian needs of jedi? we kind of had to fight for
those. i will list as much as i can recall- all this for parents who
may face the similar challenges.
jedi didn't wear a diaper for his first twelve hours of life. not
that I minded. it afforded me more skin to skin contact, and i wasn't
the one doing the laundry. i found out later that this happened
because he wasn't even in the computers. that makes sense looking
back. i don't recall them checking his temperature, how many wet
diapers he had, or how often he fed.
at some point during the first night we began to realize what we were
up against. we called the neonatal nurse practitioner and asked for a
cardiac consult. we wanted a current echo of jedi's heart. the
moment she came into our room i noticed jedi wasn't breathing. she
asked chris to give her the oxygen- which she promptly shelved. she
did not attempt to help us. i was confused and told chris to give
jedi to me. i massaged his chest, flicked his feet, rubbed his head,
and talked to him. he began breathing.
before i kindly asked her to leave she said, "you are just going to
have to keep doing that. sometimes it's better if you just let them
go."
and that- that my friends- is what is cozily called "comfort care".
as soon as she left i told chris to hand me the oxygen. soon after
she came, the neonatologist came in. she wanted to get some things
straight. our request for a cardiac consult confused her. while we
came into the birth without any real solid plans regarding the care of
our son- it seems that it was predecided that we would withhold all
medical aid from him. yes, we were offered that option- highly
suggested that option. but chris and i- talked it through and decided
that we couldn't withhold medical treatment based on a prenatal
sonogram. we wanted current clearer pictures- so we could make an
informed choice.
while she was in the room chris decided to ask her why jedi was having
apnea episodes.
"because he has a chromosomal condition. his chromosomes are not
correct in the cells of his body". the neonatologist was telling us
how these trisomy babies just don't do well and there is no use to
poke around trying to find out how to help them. i told her that
maybe they don't do well because a majority of the doctors and nurses
exposed to them withhold care. that maybe they'd do a little better
if they were given a little bit of help.
later, when the nicu charge nurse came to visit we asked her the same
question about the apnea.
"i don't know, but i'll find out."
"good answer", chris said- relieved that someone was taking us
seriously.
we finally got the cardiac consult when the cardiologist came in that
morning.
chris' main comment was "why does it have to be all or nothing? just
because we aren't going for heart surgery, why does that mean we
should sit on our hands and not do anything for him?"
my main complaint was "why can't 'comfort care' be a cafeteria type
thing? why can't we put an asterisk next to it and define it
ourselves? why don't they ask us what we want comfort care to mean?"
ultimately we wanted comfort care to be this for jedi-
clean diapers
oxygen if he needed it
food- and the ability to get it in his body.
last but not least, love
the feeding tube came about the time we notice the tide turning. some
staff started to realize what we wanted. some remained in their
autopilot "comfort care" mode.
the nurse who came in to set the feeding tube just stood there
watching him have an apnea episode in his bassinette. she requested
him to be in the bassinette for the feeding tube placement. i asked
her "is he breathing?"
she said matter-of-factly, "no".
"babe, just get him!" chris said.
i pulled the bassinette closer to my bed and took him out- rubbed,
flicked, talked- and he began to breathe again.
another nurse came in later. i honestly can't remember what she was
talking about because after she called jedi "it" three times, i just
stopped listening and stared out the window. thankfully chris kept
listening.
once the tube was set- they put him on a feeding schedule that we
didn't know would surely starve him to death. his diapers began
showing uric crystals that the nurses called "brick dust" because
that's what it looks like in the diaper- rust colored dust. my friend
michelle was trying to score some donor breastmilk and texted me
asking how much jedi needed. i told her what he was taking and she
exclaimed how inadequate that was. we requested a bump up in his
feed. they didn't suggest it- we did. it just felt so strange. in a
normal baby they would have been all over any opportunity to up his
feeding. but since jedi was slated to die, why keep his tummy filled?
at the hospital chris was a strong and steady advocate for jedi. he
calmly and matter-of-factly would tell them just what we wanted them
to do. i have never cared more for him than i did during the times he
stood strong for his helpless son. such love- such passion. i felt
so proud to call him my husband.
and taking jedi home- felt so good to leave and be able to surround
him completely with love and deep and true comfort care*.

letter from afghanistan

2010-11-19T23:04:00.000-05:00

he sent it this morning. my dad printed it up and read it as a eulogy at jedi's funeral mass.

Blessed Liz,
I am so grateful for your example and love, your faith and your trust. Many speak of the heroism it takes to come to Afghanistan, particularly in these circumstances; but throughout these last two months and more, you and Chris have been the heroes to me. Thank you for the witness you allowed yourself to be to so many. It is so easy (and so much more desirable at times I think) to want to just close the door and take care of one's own life and responsibilities. I feel that pull over here so much...so many do suffer the lack of faith in their lives, and the guidance it brings--but I struggle myself just being away from you all. Yet the Lord has called us and put us in a place and time that allows us the choice--will we take up our cross and be raised up, or will we succumb to the selfish urges to hole away and hide, and nurse our wounds in selfish resentment?
Thank you for the choice and the statement of life you have made--not in contrast to abortion, but in contrast to the carelessness and sterility with which the handicapped are treated, especially when their viability hangs in the balance. Please God many will find your blogs and your story and renew their thoughts of purpose and meaning to life, and begin treating others in their lives with dignity and beauty. I cannot wait to walk with you on January 21 in Atlanta. God bless and keep you in the calm and peace of His heart and hand!
As you move through this time, though you have already had the opportunity to plan so much and prepare in advance, I do not believe that you can ever prepare for the pain of the loss of a loved one, because we don't really know how deep the love we have is until we lose them....and as C.S. Lewis said, "The pain now is a part of the love then; the minute we choose to love, we choose the pain." So it is in direct proportion. And though St. Paul says, "We do not grieve as those who have no hope", he does not say "we do not grieve"--just not as those who have no hope. You will be graced, as you have been, in order to bear this cross--but cross it may yet be. When its weight and burden catch you, when the pain of the wound surprises you and you feel the rush of sorrow, know that it is not contrary to faith any more than love is contrary to faith--but in the midst of the hurt and the tears, cling to the promise of faith, the promise of the Resurrection!
I love you so much Liz!
I continue to offer prayers on you and Chris's, and the kids behalf. Know that you are loved so much from over here--and I cannot wait to see you soon! Hugs and more hugs!
His unworthy servant and yours,
Fr. Kevin

in lieu of flowers

2010-11-18T18:05:00.002-05:00

please donate to be not afraid.
it's a wonderful outreach that helps parents who choose to carry to
term a pregnancy that has received a poor prenatal diagnosis.
tracy has been such a beautiful help- taking calls from curious,
stressed out, joyous little me even into the wee hours- always had a
listening ear and loving advice grounded in faith and experience.

the correct information for donating is-
Make checks payable to St. Mark Catholic Church, "Be Not Afraid - Baby Jedidiah" in the memo.

Send to:
St. Mark Catholic Church
14740 Stumptown Rd
Huntersville, NC 28078

funeral information

2010-11-18T16:38:00.000-05:00

jedi's funeral mass will be held at the catholic church of st.
monica's in duluth, ga at 11:00am tomorrow(friday 11/19).
a reception will follow soon afterwards in the hall next to the church.
we will meet up at honey creek woodlands- a green cemetery in conyers,
ga- at 2:00pm for burial.
all are welcome to come celebrate the life of jedi with us.
what a gift!
i am still overcome by immense gratitude.
everything happened so beautifully- his birth, the thirteen days he
was with us, and his death. i am just so thankful for the whole
experience of him.

st jedi, pray for us!

2010-11-18T09:26:00.001-05:00

sweet jedi died last night.

eleven days

2010-11-16T22:43:00.000-05:00

today started rocky. during a diaper change he spit up. he's never
spit up so i wasn't prepared. i ran to te bathroom and got a suction
bulb and cleared him out but not before he aspirated a little. so, i
really began to worry about his lungs being rattley- they sounded so
bad.
he is a fighter- and with a little help from daddy's steamy shower and
some eucalyptus oil on the blankie, not to mention some timely
suctions- he cleared up nicely.
lesson of the day is- do not attempt to change his diaper within an
hour after a feed. the compression of his stomach will cause the spit
up/aspirate/suction cycle.

and jedi got to participate in his first family rosary tonight.
samantha asked if we couldn't pick back up on the nightly family
rosary routine. it was nice- i don't see why not:)

"he's a little miracle!"

2010-11-15T17:47:00.001-05:00

from the hospice nurse today after she listened to his heart and lungs.
"he sounds so clear. And his color looks better every time i see him."
i asked a few questions- my primary concern was feeding tube
placement. It has sounded a little off for the last day or so. i
have to really hold it in place when i feed him or he cries. i think
he's growing out of the old placement and i'm going to have to find
the new placement soon. i am curious about what his weight is now.

but all these good reports- wow! how wonderful are Your works O Lord!

kid speak

2010-11-15T03:37:00.000-05:00

we have our whole family under one roof. it was nice to be able to
adjust to having jedi home while the kids were so wholesomely occupied
at the lakehouse- but i had been anxious to see how we'd do all
together again.
last night the kids took turns holding him.
"he's such a little gift", i said.
samantha, while holding him, said, "what's that saying about little
packages?"
"the best gifts come in small packages?" i offered.
"yeah."
"no",max chimed in. "he's a big big gift in a small body."

beautiful quote

2010-11-14T14:34:00.000-05:00

The passage is from Marilynne Robinson, a Pulitzer Prize-winning novelist:

"The ancients are right: The dear old human experience is a singular, difficult, shadowed, brilliant experience that does not resolve into being comfortable in the world. The valley of the shadow is part of that, and you are depriving yourself if you do not experience what humankind has experienced, including doubt and sorrow. We experience pain and difficulty as failure instead of saying, I will pass through this, everyone I ever admired has passed through this, music has come out of it, literature has come out of it. We should think of our humanity as a privilege."

Infant of prague novena

2010-11-14T13:01:00.003-05:00

through a series of uncanny and coincidental events and happenings i have felt called to intrust jedi to the Infant of prague.
i just did a search online for the Infant of prague novena and it turns out that it's a novena to be said every hour for nine consecutive hours. so i begin this today- asking for the grace to be the best mom for jedi i know how to be and asking for the gift of days for jedi-so his uncle can look into his eyes and feel the quiet strength of God.

INFANT JESUS OF PRAGUE NOVENA PRAYER

O Jesus, Who has said, "Ask and you shall receive, seek and you shall find, knock and it shall be opened," through the intercession of Mary, Your Most Holy Mother, I knock, I seek, I ask that my prayer be granted.
(Make your request)

O Jesus, Who has said, "All that you ask of the Father in My Name, He will grant you," through the intercession of Mary Your Most Holy Mother, I humbly and urgently ask your Father in your name that my prayer will be granted.
(Make your request)

O Jesus, Who has said, "Heaven and earth shall pass away but My word shall not pass away," through the intercession of Mary Your Most Holy Mother, I feel confident that my prayer will be granted.
(Make your request)

This novena is to be said each hour on the hour for 9 hours

jedi's birth

2010-11-13T16:14:00.006-05:00

thursday night chris' work had an earnings call- the end of a financial quarter- so he joined some co-workers for a drink after work. once he made it home my contractions started becoming timeable. they were roughly 10-12 minutes apart. we watched tv for awhile until i got tired of timing the contractions.

i decided to head upstairs and try and get some sleep as this was probably the night. i drank a half-glass of red wine and read the girls to sleep. i texted my doula and told her to get some rest. i slept well until about 2:30AM when the contractions began to wake me up. i timed a few- they were 6-7 minutes apart at times. sometimes they would space to as much as 12 minutes apart. i went ahead and got up. i packed some last minute things and called dr. tate. i got his nurse practitioner and since we were expecting our 7th and we were more than 45 minutes from the hospital she suggested we go ahead and drive in. i called regina to come over and stay the night with the kids and she arrived within 15 minutes.
we were on the road by about 3:00AM and the contractions were not fun in the car. in the reclined front passenger seat i would assume a hands and knees position with my face toward the rear of the car. thankfully we were there by about 4:00AM. we parked and loaded up with our most important bags. we must have parked in the farthest lot from labor and delivery as we walked a good mile of hospital hallways just to get to where we needed to go. once we checked in at labor and delivery we had to follow a nurse who was a competitive speed walker in a past life. she slowed to a jog when she perceived i was having a contraction. in the room i was hooked up to the monitors for the initial strip.
i texted my doula to announce our arrival at the hospital, i changed into my gown, and prepared for the blood draw. i'm not the easiest stick. my claim to fame is the time the american red cross turned me away because they couldn't locate a vein. so my doctor got me on the phone and we discussed placing a heplock- in case of emergency they didn't want to be on a heated treasure hunt for a vein. the nurse called in the nurse anesthetist to place the heplock. supposedly they are really good at finding veins. well, at least jim was. all the drama with placing the heplock completely scared all of my contractions away. the nurse checked me and announced i was 5-6 cm dilated. margaret arrived as well as my doula. we kind of chilled in the antepartum room for a bit until we were moved to a l&d room. my family arrived and began their wait in the outer room.
so we tried various things to stimulate more contractions. nothing working. i searched inwardly for reasons why my labor may have stalled. i found that i was scared. that my body was ready to go- but once the heplock drama happened and stalled my labor, my mind took over and prevented labor from proceeding. i needed to get my brain out of the way so my body could do it's job. i typed up this post and submitted it to blogger. i needed prayers in a bad way.
people started flooding my inbox with sweet comments, messages of hope, and statements of faith. at times i became so overwhelmed with gratitude and love that i would start crying- this would bring on the strongest contractions- better than pitocin! it was just very cathartic- and once my emotions started flowing i began to open up and allow.
at one point i was sitting in the bathroom and i kept thinking through one statement. "i believe in God, the Father Almighty, Creator of heaven and earth."
i mean- GOD! He created heaven and earth for pete's sake! and i'm worried about what's going to happen with my birth??? i kept repeating this statement from the creed- whenever i felt doubt. it was my mantra that would help me through the next 10 hours.
at about 1:00PM doctor tate broke my water. no gush- no nothing. i knew my water was low, but not that low. it worried me. he also announced that i was closer to 7 cm. i took a nap and focused on readjusting my mind. i decided that i needed to get over whatever walls were in my way and get this show on the road. doctor tate suggested that if labor didn't pick up he'd spray some pitocin in the air and that might just be enough. i was NOT wanting to get hooked up to pitocin. i wanted to get over and meet my fears head on- spurred by my own strength- not pushed forward by some foreign synthetic hormone. i just thought that it would be against my will and i would not be mentally prepared for pushing and beyond.
at about 3:00PM- the hour of divine mercy- my contractions returned. they became a little stronger but never became closer. i spent alot of time on my own during those hours. i needed focus. i needed freedom to cry and to open myself up- become vulnerable, so i needed privacy. i retreated to the bathroom often- taking a shower once- but mostly just buying space for myself.
i'm not exactly sure what time things started feeling close. i think i remember dusk in the window- so it must have been soon after sun down.
during one contraction as i was leaning on the bed and my doula was doing the hip squeeze thing- imagine my hips being a clothespin- it felt right to bear down a little bit. so i did. and also with the next contraction. they were still really spaced out- like 7 minutes or so. at one point someone said, "you can't have the baby while you are standing by the bed." so i climbed into bed. we adjusted the bed so the head was nearly perpendicular to the foot of the bed. i was facing the back wall with my upper body supported by the head and my lower body in a kneeling position. i told my doula that i felt like he was right there. she told me to feel for him. i did and i was correct- he was right there! t
his is when my contractions spaced out to what seemed like forever. if i had to guess i'd say they spaced a good 15 minutes apart. my legs got tired so i had the bed flattened again and laid on my left side. teams were preparing- the room was filled with people. the rest of the room remained dark but for a spotlight that was switched on above the foot of the bed. doctor tate was suiting up. each contraction, i believed, was the contraction that would bring jedi out. i pushed through one contraction and then felt relief- i thought i was done, i thought his head was out- but i was wrong. it was confusing. this labor and delivery was VERY atypical for me.
i kept expecting the crazy out of control transition that i'm used to. i asked my doula what was going on. we both felt like this labor was the gentle labor that jedi needed. jedi didn't need hard contractions. jedi didn't need transition. jedi didn't need chaos.
at one point i just had this overwhelming feeling- i felt that i was soon going to see the face of God. i tucked my chin and pushed as hard as i could. it was so unbelieveably hard to push him out! max was 10 lbs 4 oz and 23 inches and he was easier to push out!
i finally gave one last push and out he came. i sat up to receive him. he was light gray and covered in creamy lanugo. i needed to hold him. they suctioned him a couple times and then handed him to me. i began massaging him and talking to him, encouraging him to breath. the nurses threw a sheet over my lower half. chris brought father joseph and father jack into the room. i felt everyone staring at me- silent. i could hear a pin drop. i just kept rubbing him- willing him to breathe. i'm really not sure how long this lasted. chris, afterwards, said that it was the longest 2 minutes of his life. i cannot accept that. it had to be longer. i'd say 5?
i looked up at my brother and thought "begin the baptism now! what are you waiting for?"
jedi began to breathe. i began to breathe. i sighed. what a relief! i held him close. the baptism began. i asked for oxygen for jedi. my sister, margaret- our pediatrician- suctioned him because his breath was rattly. halfway through the baptism he began to cry. he opened his eyes. these are two things i didn't expect at all- having read other trisomy birth stories. my brother finished the baptism and confirmation- he blessed us and then left the room so my doctor could work on the afterbirth. since my contractions were so spaced my uterus wasn't clamping down well enough. i lost a good amount of blood. i cut the cord and soon after received a shot to aid my uterus in clamping down. i held my boy close the whole time. they kept bringing warm blanket after warm blanket and piling it on top of us to get us warm. i was just on cloud nine. so blissed out. he was sweet and had a cry that was high and loud. he was small and soft and warm. so very warm against my chest. i savored every minute.
someone asked, "what time was he born?" we looked up at the clock and it was 10PM so we guessed probably 9:30. the kids came in soon after. henry came in almost oblivious, like he had shown up to a party or something. george came tearing into the room and immediately requested his own hospital gown. mary jane wanted to see jedi, same as samantha. franky was just wide eyed and a bit freaked out at seeing me in my current condition. samantha was pretty shaken up at jedi's constant crying. they all left within a few minutes and we had to bring samantha back in when jedi had calmed down. it was good for her to see him in a calmer state. next were the grandparents. their visit was just as brief as the kids.
once everyone had left chris held jedidiah so i could get to the restroom. i felt faint from the loss of blood and lack of nurishment during the last 12 hours. once i was back in the bed i passed out for a few minutes. my first meal was a turkey sandwich on a hamburger roll and pineapple pieces. i was halfway through with my meal when jedi stopped breathing for the first of many times that night.

tests

2010-11-13T10:19:00.000-05:00

several people have asked me if we had tests run to confirm the
prenatal diagnosis- since we didn't have an amnio. we roomed in the
first night, waiting and watching- holding our breath. when the sun
rose and jedi was still with us we felt we owed it to him to check and
see what, if anything, we could do to help him fight. chris
accompanied him to get an echo of his heart and an ultrasound of his
brain. he also had blood drawn for a genetics test called FISH- the
results of which wouldn't return until the following sunday morning.
the brain scan came back positive for semi-lobar holoprosencephaly.
the prenatal diagnosis based on ultrasound was alobar
holoprosencephaly. the ECHO supported the prenatal diagnosis- truncus
arteriosis amongst other things. one thing that brought us some
relief was that the truncus wasn't ductal dependent. the truncus
wasn't relying on the ductus(the bypass passage that is open in unborn
babies and closes within 24-48 hours of birth). so after the ductus
closed jedi wasn't going to experience a rapid decline in reaction to
it's closing.
saturday evening a geneticist visited our room. he did a physical
exam of jedi and asked us several questions. based on his findings he
suggested a diagnosis of either trisomy13 or trisomy18.
the neonatal physician came sunday morning and shared the FISH test
results. she said the test was inconclusive so they sent it on for
further testing. but what they did find out was that jedi was more of
a trisomy18 mosaic.
i will attempt to explain mosaicism. they took 60 of jedi's cells.
they looked at the amount and number of the chromosomes in each cell.
each normal cell has two of each of the 23 chromosomes. trisomy means
there are three chromosomes. the number(13,18,21) following the word
'trisomy' is refering to which chromosome is tripled.
so they took 60 of jedi's cells and looked at the makeup. 30 of them
were found to be trisomy18. and the remaining 30 were found to be
normal-having 2 of each of the 23 chromosomes.
so it's a better diagnosis- genetically. but looking at ALL the
tests, the good genetic news doesn't change the heart news. and
anything invasive and aggressive, like a heart surgery, would likely
kill jedi. truncus surgery on a healthy child is very difficult- and
it's actually not one surgery but a series of surgeries.
so those are the findings-
he is doing good today- praise God!
he continues to tolerate his feedings. he is breathing nicely. his
color fluctuates- but we are finding it's positional. he doesn't like
being upright against my chest. He likes to be laying propped up on a
lap or cradle held. he continues to open his eyes to look around at
the world around him. he likes faces and lights- much like a normal
baby.
as always- thank you much for your prayers and support. the meals
have been great and leave my caretaker little sister free to do other
things around the house- not to mention taking care of her own 4 month
old!
she is super awesome and i thank God or her every day. and thanks,
mom and dad, for not stopping at 10 children- but being open to eleven:)

the lakehouse

2010-11-12T15:18:00.000-05:00

the arendales rented a lakehouse on lanier for the week and are
keeping the older kids. it used to be a ranger station so it's got
lots of land for the kids to roam. some are fishing off the dock
now. some are collecting acorn caps to make whistles. chris is now
playing horseshoes on the sand that is in the background of this
picture below. the front and back decks are nice and shaded. it's
just so peaceful.
their cousins are over- helping in this transition. we decided to
bring jedi up for a visit- some fresh air and sun is doing him good.
i will not stop marveling at the family that God has surrounded us
with. their support means so much to me.

snackin' at the lake

2010-11-12T15:10:00.000-05:00

one week old!!!

2010-11-12T03:32:00.001-05:00

and he is blessing us with normal baby behavior- crying because he is
gassy!
he slept ALL day yesterday- saving up his energy so he could complain
about something i ate!
a week! one week old! what a miracle, wrapped in a blessing, inside
a gift. i am so utterly thankful.

and to thank God- because i am starting to learn that this is the
paradoxical way He works- i will ask for more:)
uncle father kevin comes back for his two week break in january. on
the phone a couple days ago he said it was something like 60 days from
then.
i am daring to dream, daring to hope, daring to ask God to allow jedi
to meet his uncle.
won't you join me in thanking God by asking for more?

2010-11-11T13:26:00.000-05:00

we had a wonderful night! the apnea monitors went off for no reason over and over again until chris and I just decided to take them off.

i am there now. more accepting and more at peace with letting go. if jedi passes at night in our bed, the bed he was conceived in- so be it. peaceful, serene, and surrounded by love. i slept SO well. the peace that filled my heart came from the knowledge that God's timing is perfect. that he cares for us so intensely- i need not fear.

my milk has come in really well- so well that I skipped the 4am pump session. it's amazing how sleep or lack there of can affect me so greatly.

today he has done well. he sleeps so peacefully and when he's awake he is a calm observer. he doesn't cry much. he kind of calls out briefly when he's annoyed. when the food is coming too fast or when my stethescope is too cold. in the hospital he sounded like a screaming eagle- kind of a wild call. but now it's just a single yelp or two. i like to think it's because i am so attentive- but it is likely because he is getting weaker.

chris was so attuned that he suggested the drops of breastmilk in jedi's mouth was what was making him congested. so we started giving him little sponges soaked with water to keep his mouth from drying out- and he hasn't gotten congested since. thank you, daddy. plus chris got a neat little humidifier that is directional so jedi slept with it on low and aimed at his face all night. it worked beautifully.

thank you for your continued prayers and support. the meals and gifts have been incredible and such a help!

again- i have to say how very helpful our families have been through this time. without them we wouldn't be able to enjoy fully this brief time with our little jedi.

henry and jedi

2010-11-11T07:51:00.000-05:00

mj and her jedi

2010-11-11T07:50:00.000-05:00

an arendale family portrait

2010-11-11T07:47:00.000-05:00

The parking lot

2010-11-10T18:30:00.000-05:00

on our way home from the hospital monday we drove past the parking lot
on the corner of spring and 17th. the same parking lot in the blog
post "praise God" where we waited with uncle father kevin for the
minibus's flat tire to fixed. i kind of felt a connection through
time and space with him at that moment in our drive.
he called last night and said that he'd been trekking all over the
afghani countryside, visiting the soldiers in other bases- bringing
them Christ. he had this feeling that he just wanted to get back to
his home base- to sleep on his airmattress instead of the hard cots
that gave him shoulder cramps. once back to his homebase the feeling
didn't leave. he said he felt down and a little depressed and finally
realized that he didn't want to be at his home base- he wanted to be
home, with his family. i want him home too. i miss him and know that
the distance eats at him.
i ask God to sustain him. keep him strong so as to fulfill His
mission- whatever that may be.

2010-11-10T18:21:00.001-05:00

2010-11-10T18:21:00.000-05:00

this am

2010-11-10T09:14:00.000-05:00

co-sleeping between his two mamas.

Five days

2010-11-10T07:11:00.000-05:00

what a long night last night was. just before bed jedi stopped
breathing a couple times. he just turned dark. i massaged him, spoke
to him, prayed. he finally picked back up. even with the apnea
monitor on my sleep was patchy.
his breathing now is shallow and eratic. he looks tired. when he was
having those episodes last night and i had him revived i whispered to
him "thank you for coming to visit me. i am so honored to be your mom."
i am. every thing i do for this least of His people, i do for Him.
massaging his eyes to work the eye boogers loose, moistening his mouth
with a tiny wet sponge, massaging his tiny body with oil, feeding him,
changing his diaper, keeping him close and warm, drinking water and
eating enough food so that i may produce enough milk for him- every
action of mine in these last few days have been for and about him and
i have never felt so complete.
chris is so in love. he holds jedi and does his night feedings
through his exhaustion with such a tenderness. he talks to him, even
though at the hospital, jedi failed his hearing test. andchris has
been there, in a special way, for me. he is such a strong support. i
thank God for him.

a big family

2010-11-10T00:26:00.001-05:00

an email from my big sister. our families have really come together to make this an easier time on us.
my older sister felt called to send this email out to the family

What a blessing a BIG family is....Thank you Mom & Dad for the gift of life & teaching us all the true meaning! We have all filled in nicely where we have been needed. Even those who aren't near, we feel your spiritual assistance.

Thank you all for your selflessness! I love each & everyone of you so deeply & I thank God for giving me such great siblings, parents, & Aunt!

Love to all,

Regina