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.
Lilypie Angel and Memorial tickers
Monday, October 24, 2011
Saturday, October 22, 2011
freedom
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.
Thursday, September 22, 2011
images from today's ultrasound
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.
Monday, September 5, 2011
personal choices without handwriting on the wall
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.
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.
Thursday, August 25, 2011
12 hour growth spurt
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.
Sunday, August 7, 2011
iPieta app and today's readings: faith
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.
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.
Wednesday, August 3, 2011
a new trisomy family needs prayers now
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.
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