one of the nicest surprises to come out of blogging about our experience with jonathan, is that not only is it very healing, but i've learned that the blogosphere holds an entire support group-like network of moms like me who have walked a similarly devastating path and who cling to the promises of our Lord for comfort and healing. (ask any of them...it works.)
we blog about our experiences and then we go searching for blogs like ours in order to glean anything we can in order to learn and grow from each other. we spend time encouraging each other through our blogs by commenting and sending emails. and while there is no doubt each of us would do just about anything to give up our membership in the "mothers who have lost a baby" club, i would say that for the majority of us, if we have to be members, then we are going to make the best of it.
so i am honored to be nominated by lori at lori does maryland for the beautiful blogger award. i already follow lori's blog regularly to be encouraged by someone walking an even more difficult road than i, and who does it way more gracefully than i ever could. thanks lori for your beautiful blog!
i'm also happy to share a few blogs with you that have encouraged me on my journey. the common threads, of course, are that we have all lost a baby within the last couple of years, and we all love the Lord and trust in His purposes for our losses. i hope you will visit them and pray for these wonderful women:
shelley at the talbotts
lindsey b. at our hope endures
katie at our little piece of paradise
katy at in hannah's honor
amanda at blessings 4 life (just said hello and goodbye to her precious caroline a week ago.)
rachelle at hailey's hope
molly at the pipers
and angie at bring the rain
(the last two are very well-known blogs.)
*****
speaking of networking, a couple of nights ago, i had the privilege of meeting the momma of joshua, who is due in april and has been recently diagnosed with trisomy 18. over a mexican dinner with a mutual friend, we shared the terrible moments of learning something was wrong, making the decision to carry to term, birth plans and DNRs, holding jonathan as he died, and other depressing subjects that no one should have to discuss when speaking about their child. however, in spite of the mostly dreary subject, there weren't many tears at all. our conversation was very comfortable and was actually punctuated with laughter here and there. i don't think anyone would have guessed that our main topic was preparing for the loss of a baby.
but then, the common thread we shared was our faith in Christ.
He gives us the strength we need to get through something like this.
He gives us hope, reminding us that we will see our babies again one day.
He gives us the courage to move forward in life; to be able to smile and laugh in the midst of difficult circumstances.
He comforts us, so that we might comfort someone else who needs it.
...and we can't imagine life without Him.
please consider praying for sweet joshua and his family.
2.28.2010
2.24.2010
i'm back...
(ahhhh.) hear that? that's me, taking a nice deep breath after returning home from a much-needed vacation.
and no, i didn't go to a white-sand beach and lay around in the warm sun, reading a good book while kate and greg splashed in the water nearby. that would only be a few-minutes drive for us from where we live anyway (don't be jealous.)
pictures from last summer
instead, i, by myself, headed north to visit a good friend in washington DC. DC, as in, where there was lots and lots of snow on the ground. i didn't even have the proper shoes to walk in something like that. but the point of the trip was to spend time with my friend, christy, and to enjoy a few days relaxing and hanging out with no real itinerary or agenda to accomplish. it was the first time since our journey with jonathan began that i felt like i've had a real break. to not have to worry about anything except where we wanted to eat out for dinner. it sure was nice to get away for a few days.
i should have known it would be cold there because the morning i arrived at the airport to leave, our flight was delayed a bit so our plane could de-ice. how do you de-ice a plane in florida? apparently you move it out of the shade and into the sun. seriously. so after a half-hour in the sun, the plane was ready to go.
christy's house- check out the snow.
it wasn't my first time in DC, so we didn't do the whole tourist-thing. but we did spend half a day on friday walking around some of the monuments as best we could since the sidewalks were covered in ice and snow. it was windy and freezing. we even had an obama sighting. well...ok, it was probably just michelle. we don't know for sure, but it was a police escorted motorcade of several SUVs coming from the white house as we stood watching on the hill at the national monument. and it sure does make my story more interesting to say we saw an obama. (i looked it up...the president was in vegas on business on friday and michelle was in DC.)
the white house in the distance
we spent the rest of the morning in the holocaust museum (amazing and awful) and popped into the smithsonian for a bathroom break and a cup of coffee before we caught the VRE to old town-alexandria for the rest of the day.
the virginia railway express...way better than the metro
on king street in old town, i was expecting to see a bunch of boutiques and cafes that i couldn't afford, so i was secretly excited to see a ross and other outlet stores in the middle of it all. needless to say, we did a little shopping. christy and i bought the exact same pair of shoes that could either be really cute or really ugly (the vote's still out.)
unfortunately for me, they look much cuter in a size 8 than they do in a 10.
while i was there, we visited king street two more times as well, and had sushi and chicken satay for lunch one day, and then sandwiches on another day.
some other random things about my trip included eating out mexican two nights in a row, hitting the gym for a serious workout because of the mexican food, girls night with some of christy's friends, movie night, another sushi lunch, and more shopping.
my five bowls of salsa. heaven.
that's right. i love my salsa.
anyway, all that said about my trip, the best part was spending time with christy. she was a fabulous hostess and when we weren't out and about, we had the best time catching up. she's one of those treasured friends that brings up jonathan before i do, asks me questions about him, and lets me talk freely and openly about him. and when we weren't talking about jonathan, we talked about how blessed we are and how great our God is, in spite of the difficulties we've both struggled with recently. it is truly refreshing to be around someone so positive and encouraging.
"As iron sharpens iron, so a friend sharpens a friend." ~Proverbs 27:17
speaking of encouragement, she also "encouraged" me to get a fabulous pair of casual boots to wear over jeans while i was there. i needed them. you know, for proper footwear in the snow. now, i almost hope it stays cold enough a little longer here in florida so that i can wear them a few more times before i trade them in for flip-flops.
2.16.2010
more about last week's opportunity
after receiving a blog comment and a couple of other inquiries about what i actually spoke about last monday regarding suggestions to help a grieving patient, i decided to write about it.
here is most of what i spoke about:
first and foremost, i was very appreciative of the opportunity to be able to share my story and that the hospital was genuinely interested with learning how they can improve communication and care concerning a grieving patient.
monday was also jonathan's 4-month birthday, so it was a privilege to be able to share my story on that day.
i gave a little background of when jonathan's story began unfolding. you can read that here if you are new to this blog.
when jonathan was born, the nurses helped take pictures and video of it so that greg wouldn't have to. they also taped our families meeting jonathan.
here is most of what i spoke about:
first and foremost, i was very appreciative of the opportunity to be able to share my story and that the hospital was genuinely interested with learning how they can improve communication and care concerning a grieving patient.
monday was also jonathan's 4-month birthday, so it was a privilege to be able to share my story on that day.
i gave a little background of when jonathan's story began unfolding. you can read that here if you are new to this blog.
i talked about our visits with our specialist, dr. thorp at sacred heart hospital in pensacola, and with our genetic counselor, beth allen. on that dreadful day right after i had the amnio done, we met with dr. thorp and beth right afterwards to discuss the ultrasound findings and our plan of action. it was a very emotional and tearful meeting for us, as you can probably imagine. but i will always be so, so grateful that after we told them of our plans to continue the pregnancy, they both immediately expressed their full support. my regular OB, dr. esses, was also 100% supportive.
i have heard so many stories over the last several months of patients who did not have their doctors' support even though it was their personal choice to continue the pregnancy. and i am sorry for each one of those stories. to not have our doctors' support would not have changed our minds. but i tell you that in that moment, already full of devastation upon realizing the impending death of our child, it would have been doubly devastating to hear anything other than words of support from our physicians. so i am very, very thankful for our doctors.
i have heard so many stories over the last several months of patients who did not have their doctors' support even though it was their personal choice to continue the pregnancy. and i am sorry for each one of those stories. to not have our doctors' support would not have changed our minds. but i tell you that in that moment, already full of devastation upon realizing the impending death of our child, it would have been doubly devastating to hear anything other than words of support from our physicians. so i am very, very thankful for our doctors.
our first contact with sacred heart emerald coast began with a meeting with our social worker, dawn, a few weeks before my original induction date. i did not know what a social worker did in a situation like ours, but after meeting with her, i sure was grateful to have her as a liaison to the nurses for us. i did a lot of worrying about how jonathan's delivery day would go down, and it was all for naught. of course, i believe that God orchestrated all the details into place, but i would have felt a lot less anxious the closer i became to d-day, had i met with dawn earlier or had known this service was available to me. although my situation was rare, i have already become aware of two more trisomy cases after mine in which the baby has or will be born at this hospital. this service to the patient is invaluable, but in my case i was not aware of the service early enough. once a patient receives a poor prognosis, this should be a next step; therefore, suggestion #1 was that this service be available to the patient immediately after diagnosis.
i then got to brag a bit about the care we received once we arrived for jonathan's birthday. here are most of the points i made:
i've mentioned on this blog before how great our nurses were. they made us feel comfortable from the moment we walked into our room.
speaking of the room, we were given the huge delivery/post-partum room at the end of the hall so that we would be mostly away from other moms and babies during our stay. sadly, our room had a card placed near the entrance of the room that depicted a leaf and a raindrop on it which apparently lets the staff know that our visit to the hospital is not under the happiest of conditions.
if you ever see this on a door in the maternity ward, pray for those inside.
one of the nurses set up all of the keepsake items we had brought as a beautiful display in what would have been jonathan's bassinet.
our social worker, dawn, had ordered a "gemma bear" blanket and presented it to us as an incredibly thoughtful gift. it's embroidered with the words "child of God."
when jonathan was born, the nurses helped take pictures and video of it so that greg wouldn't have to. they also taped our families meeting jonathan.
after jonathan passed away, the nurses helped greg give him a bath. they were so gentle with him and treated him with such care. (and when i first heard of anyone doing this for their baby once the baby had passed away, i felt kind of uncomfortable about it and wasn't sure if we would do it. but it became the most natural thing to do for him. it was our chance to be parents to him and care for him, even after death.)
our day shift nurse, jessica, stayed past the end of her shift to see us through jonathan's birth and passing. our social worker, dawn, came back to the hospital after going home to tend to her family and stayed till about midnight helping us take handprints, footprints, etc. of jonathan. i was just too tired to help, so the nurses wound up doing most of this for us. here were these educated nurses doing menial things for us such as stirring powder and water together to make clay molds for us. it was way above and beyond any job description, i'm sure.
that night, after the funeral home came to take jonathan, my arms never felt so empty. it was then that our night nurse, deja', gave us a donated teddy bear from build-a-bear. at first, i thought we'd give it to kate as a gift to remember jonathan. well, this past christmas, greg surprised me by having the recording of jonathan's heartbeat placed into the bear's chest and a recording of kate saying, "i love you jonathan! miss you!" into the bear's hand so that when you squeezed these parts of the bear, the recording would play. this bear has become a very important keepsake for us and it was incredibly thoughtful of our nurse.
a week or so later, we received a sympathy card in the mail signed by some of the maternity nurses.
there are things i'm sure to have left out that were done for us in the name of kindness. but as you can see, we were extremely well taken care of and everyone went above and beyond their duties to care for us. it was so much more than we could have asked for.
my other suggestion was since there have been other trisomy cases come about recently, it seems to me that there needs to be some sort of perinatal hospice program available in the local area. unfortunately, jonathan did not live long enough to come home with us. but at one point in our journey with him, we were told there might be a chance that he could survive up to a month if he made it to full-term. (this was before his heart and kidneys got so bad.) our decision, based upon the significant information we had regarding his heart and kidneys, was to not put him through surgery, but to give him comfort care only. (that alone requires a post of it's own for further explanation.) if he had lived long enough for us to bring him home from the hospital, then we would have needed perinatal hospice. currently, it is not available to sacred heart emerald coast patients like it is to those who live in pensacola.
after we took turns speaking, those attending the class were able to ask us questions or make comments. several people in the class participated in this part. overall, the response was very positive.
i would say that the central idea that all of us on the panel agreed on was, what you say and how you treat a grieving patient makes a huge impact on the situation, either good or bad. it is basically common sense that kindness and sensitivity to the patient during a sad time has the power to bring a little light into some very dark hours.
i walked out of there with a headache from holding back tears as i spoke, but otherwise i felt very good about the experience. i also feel that if the Lord brings about another opportunity to talk about our journey with jonathan, then it might be easier the next time around. i won't be seeking it out of course, so we'll just wait and see what happens.
i would say that the central idea that all of us on the panel agreed on was, what you say and how you treat a grieving patient makes a huge impact on the situation, either good or bad. it is basically common sense that kindness and sensitivity to the patient during a sad time has the power to bring a little light into some very dark hours.
i walked out of there with a headache from holding back tears as i spoke, but otherwise i felt very good about the experience. i also feel that if the Lord brings about another opportunity to talk about our journey with jonathan, then it might be easier the next time around. i won't be seeking it out of course, so we'll just wait and see what happens.
2.15.2010
love
greg and i celebrated valentine's day a day early, on saturday night. i joke that we've been married long enough now that celebrating on the actual day isn't important anymore. and we don't buy each other gifts. now we just enjoy anytime we can be alone and go out for a nice dinner. so that's what we did.
by now, greg and i have experienced some of the best days of our life together (getting married, the birth of our babies) as well as the worst (jonathan's diagnosis, burying our child.) we have also, by now, most likely seen the very best of each other as well as the worst. and while it's easy to love someone in the good times, we still choose to love each other during the not-so-good times.
this kind of love is worth more than diamonds or gold.
*****
God truly knows all my flaws and short-comings, and He knows all the things about me that i'm not proud of. yet, he still loves me in ways that is above anything even my husband can offer me. i looked up the hebrew concordance for this verse and came up with this further interpretation:
what a beautiful picture of how great the Father's love is for us. this kind of love is worth more than anything this world has to offer.
long before i was married, i completely bought into the commercialization of valentine's day. i guess what i'm saying is that i had unrealistic expectations of what "romance" was supposed to look like. i mean, was i the only one not getting diamond earrings on valentine's day when the commercials made it seem that that's what you were supposed to get? no one ever "went to jared" for me. of course, i'm not saying that there's anything wrong with buying chocolate hearts and jewelry for your special someone, but after being married for a few years, i have come to realize that fancy gifts on valentine's day does not define the health of your relationship.
by now, greg and i have experienced some of the best days of our life together (getting married, the birth of our babies) as well as the worst (jonathan's diagnosis, burying our child.) we have also, by now, most likely seen the very best of each other as well as the worst. and while it's easy to love someone in the good times, we still choose to love each other during the not-so-good times.
this kind of love is worth more than diamonds or gold.
*****
"The LORD your God is with you,
he is mighty to save.
He will take great delight in you,
he will quiet you with his love,
he will rejoice over you with singing."
~Zephaniah 3:17
at least three times this past week, i have come across this verse. one of those times, it was sent to me by a friend via email. i love it when that happens; i don't believe in coincidences.
i particularly love the fact that i happened to study this verse during the week of valentine's day. i tend to only think of valentine's day as something shared between couples in love and never have i thought of it as a time to celebrate the love my God has for me.
He rescues and delivers me.
He takes great pleasure in me.
He gives me rest with affection.
He serenades me with songs of rejoicing.
john macarthur's bible commentary says:
"As a bridegroom rejoices over his bride, the Lord will exult over His people with gladness and song, resting in quiet ecstasy over His people in whom is His delight."
john macarthur's bible commentary says:
"As a bridegroom rejoices over his bride, the Lord will exult over His people with gladness and song, resting in quiet ecstasy over His people in whom is His delight."
2.11.2010
a new perspective
my speaking opportunity on monday went way better than i thought it would. i am not a natural public speaker at all and i usually shy away from such things. in fact, the thought of speaking to a large group nauseates me. there is only one thing worse...skit night. if you have been on a church retreat of any kind, you know what i'm talking about. i would rather slam my finger in a car door than participate. but i knew that monday's opportunity was something that i should do, even thought i knew it would be hard for me, especially emotionally.
on the panel, it was myself, another mom and a grandmother taking turns speaking about our experiences of loss to a room full of nurses, chaplains, and social workers who were there for training on grief. my sweet friend lindsey came with me since greg couldn't make it. she had participated on the panel last year and added a few helpful suggestions as well.
our stories provided four unique perspectives on the loss of a baby.
there was a mom struggling with infertility and miscarriages.
the grandmother lost her grandson unexpectedly just 6 hours after he was born to an undiagnosed heart defect.
lindsey lost her precious gabrielle at 22 weeks.
and then there's me, who prepared for months for the death of my baby.
even though our stories were very different, i was reminded that any experience of loss, whether it was a 6 week old pregnancy or a full term baby, is totally and completely devastating whether its expected or not. i confess that i tend to minimize my loss with jonathan when i compare it to someone who unexpectedly loses a full-term baby. and on the other hand, it was mentioned that sometimes people downplay miscarriages because the baby is so small and undeveloped, or that the baby hasn't hit that magic number of 20+ weeks. too many of my friends understand from experience that there is suffering even in the earliest of losses because the bond between mother and baby begins immediately.
as you know, statistically speaking, jonathan should have been a miscarriage. i used to think that that would have been easier to deal with rather than meeting him and then having to say "goodbye" just 40 minutes after saying "hello."
last week, a dear friend who is familiar with this sort of loss said something to me that really helped me to look at my loss through different eyes. she said that she actually felt a little jealous that i got to meet my baby before he died. you see, my friend did not have that option. because i know my friend's heart, i know she said what she did to encourage me and to help me find even more good in my circumstances. until that point, i had only thought of my loss from my own perspective and not from someone who had experienced something similar.
it made me realize that knowing even the most basic things about jonathan was a blessing and has greatly contributed to our memories of him that i would not have had he not survived as long as he did. like being able to know his gender and to name him. to feel him move and kick. to indulge his food cravings. to know his habits, such as his waking and sleeping patterns. to bond with him.
i know plenty of people who, if given the option, would take a miscarriage over enduring a lengthy pregnancy destined to end in death. i can't say i blame them. but now, i've come to realize that i had the incomparable blessing of being able to meet jonathan. to hold him. to watch him open an eye. to feel his heart beat. to kiss him. to tell him i love him. and to let him go when it was time.
and i wouldn't trade it for a minute.
so back to monday. yet again, God was faithful. thanks for praying for me! i was very comfortable speaking about my experience and about jonathan. there were a few tears here and there, but seriously, can you blame me? it was so, so good to talk about him. healing, in fact. the best part was getting to talk about what a blessing he was and continues to be to us. sometimes, i just can't get over how crazy that sounds. not ever in my wildest dreams did i think i would be boasting about the wonderful blessing of carrying a baby so sick that he died 40 minutes after he was born. i'm sure it sounds completely preposterous to some people. i tell you, only God can turn something so terribly devastating into something to be thankful for. it's at times when i'm starting to feel down about what i've gone through that He shows me i actually had it pretty good. and only He can make me realize something like that.
"You have turned for me my mourning into dancing; You have loosed my sackcloth and girded me with gladness" ~Psalm 30:11
on the panel, it was myself, another mom and a grandmother taking turns speaking about our experiences of loss to a room full of nurses, chaplains, and social workers who were there for training on grief. my sweet friend lindsey came with me since greg couldn't make it. she had participated on the panel last year and added a few helpful suggestions as well.
our stories provided four unique perspectives on the loss of a baby.
there was a mom struggling with infertility and miscarriages.
the grandmother lost her grandson unexpectedly just 6 hours after he was born to an undiagnosed heart defect.
lindsey lost her precious gabrielle at 22 weeks.
and then there's me, who prepared for months for the death of my baby.
even though our stories were very different, i was reminded that any experience of loss, whether it was a 6 week old pregnancy or a full term baby, is totally and completely devastating whether its expected or not. i confess that i tend to minimize my loss with jonathan when i compare it to someone who unexpectedly loses a full-term baby. and on the other hand, it was mentioned that sometimes people downplay miscarriages because the baby is so small and undeveloped, or that the baby hasn't hit that magic number of 20+ weeks. too many of my friends understand from experience that there is suffering even in the earliest of losses because the bond between mother and baby begins immediately.
as you know, statistically speaking, jonathan should have been a miscarriage. i used to think that that would have been easier to deal with rather than meeting him and then having to say "goodbye" just 40 minutes after saying "hello."
last week, a dear friend who is familiar with this sort of loss said something to me that really helped me to look at my loss through different eyes. she said that she actually felt a little jealous that i got to meet my baby before he died. you see, my friend did not have that option. because i know my friend's heart, i know she said what she did to encourage me and to help me find even more good in my circumstances. until that point, i had only thought of my loss from my own perspective and not from someone who had experienced something similar.
it made me realize that knowing even the most basic things about jonathan was a blessing and has greatly contributed to our memories of him that i would not have had he not survived as long as he did. like being able to know his gender and to name him. to feel him move and kick. to indulge his food cravings. to know his habits, such as his waking and sleeping patterns. to bond with him.
i know plenty of people who, if given the option, would take a miscarriage over enduring a lengthy pregnancy destined to end in death. i can't say i blame them. but now, i've come to realize that i had the incomparable blessing of being able to meet jonathan. to hold him. to watch him open an eye. to feel his heart beat. to kiss him. to tell him i love him. and to let him go when it was time.
and i wouldn't trade it for a minute.
so back to monday. yet again, God was faithful. thanks for praying for me! i was very comfortable speaking about my experience and about jonathan. there were a few tears here and there, but seriously, can you blame me? it was so, so good to talk about him. healing, in fact. the best part was getting to talk about what a blessing he was and continues to be to us. sometimes, i just can't get over how crazy that sounds. not ever in my wildest dreams did i think i would be boasting about the wonderful blessing of carrying a baby so sick that he died 40 minutes after he was born. i'm sure it sounds completely preposterous to some people. i tell you, only God can turn something so terribly devastating into something to be thankful for. it's at times when i'm starting to feel down about what i've gone through that He shows me i actually had it pretty good. and only He can make me realize something like that.
"You have turned for me my mourning into dancing; You have loosed my sackcloth and girded me with gladness" ~Psalm 30:11
2.08.2010
4 months and a unique opportunity
today i am celebrating jonathan's 4 month birthday by getting to speak in a public forum about my experience. i was asked to participate on a parents' panel for a training seminar at sacred heart hospital on the emerald coast (where both kate and jonathan were born.)
not only will the experience be a blessing for me to get to talk about my sweet boy, but it's an opportunity to offer suggestions to hospital staff about what they can improve on. i must say, i truly appreciate that sacred heart cares enough to strive to offer the best care to their patients, and that they really do want to know where they can improve on their service.
i am also pleased to say that in both of my experiences giving birth there, even with one being happy and one being bittersweet, that there isn't really much room for improvement. this hospital is the best of the best (even their food is good!) and i've mentioned previously how wonderful all the nurses are. so because i don't really have many suggestions to offer, i have chosen to focus on what they did right when jonathan was born because then i will have more to speak about.
however, needless to say, this will be a very emotional day for me. it's the first time i will be telling my story (outside of this blog, of course) since jonathan passed away. please pray for me that i'm able to even get the words out, and that my experience will be helpful to the hospital staff in caring for patients in my situation in the future.
thanks as always for remembering my sweet boy on this day.
not only will the experience be a blessing for me to get to talk about my sweet boy, but it's an opportunity to offer suggestions to hospital staff about what they can improve on. i must say, i truly appreciate that sacred heart cares enough to strive to offer the best care to their patients, and that they really do want to know where they can improve on their service.
i am also pleased to say that in both of my experiences giving birth there, even with one being happy and one being bittersweet, that there isn't really much room for improvement. this hospital is the best of the best (even their food is good!) and i've mentioned previously how wonderful all the nurses are. so because i don't really have many suggestions to offer, i have chosen to focus on what they did right when jonathan was born because then i will have more to speak about.
however, needless to say, this will be a very emotional day for me. it's the first time i will be telling my story (outside of this blog, of course) since jonathan passed away. please pray for me that i'm able to even get the words out, and that my experience will be helpful to the hospital staff in caring for patients in my situation in the future.
thanks as always for remembering my sweet boy on this day.
2.01.2010
how to help a grieving friend
i recently came across an awesome blog series on this topic written by molly piper, john piper's daughter-in-law. molly and her husband lost their 2nd baby unexpectedly at 39 weeks. her series about it, if you visit it, is a very indepth and insightful how-to guide for helping a friend after losing a baby. i was reminded of three things in particular after reading it:
1. i have the world's greatest friends.
2. everyone who desires to be a friend to someone who has suffered such a loss could probably use some tips on the best way to do this, especially if they have not had a similar experience.
3. even though i have been at the receiving end of such kindness, i still need to be reminded how i can help someone else.
our situation was a bit different from molly's, having known jonathan's diagnosis for almost 5 months prior to him being born. we knew with the condition of his heart and kidneys that he would most likely not survive without a miracle. we also knew deep down in our hearts that it was part of the Lord's plan not to heal him on earth but in heaven. therefore, we grieved for him even before he was born, and again after he passed away. so in collaboration with molly's post, i've taken my own experiences as well as other ideas i've come across while reading books and other blogs, and written my own post about it.
***please note, my goal in writing this is not to be critical, but to offer some encouragement to those of you reading this who are friends or loved ones of someone who has suffered a great loss. our situation was a bit different from molly's, having known jonathan's diagnosis for almost 5 months prior to him being born. we knew with the condition of his heart and kidneys that he would most likely not survive without a miracle. we also knew deep down in our hearts that it was part of the Lord's plan not to heal him on earth but in heaven. therefore, we grieved for him even before he was born, and again after he passed away. so in collaboration with molly's post, i've taken my own experiences as well as other ideas i've come across while reading books and other blogs, and written my own post about it.
how to help a grieving friend:
1. saying something is better than saying nothing at all. there are still a few people we know who have yet to say anything to us about jonathan, even though they were fully aware of his diagnosis in june and his death in october. it's quite awkward, understandably, for both sides.
it's been a little hurtful but i'm trying to be understanding about it; mostly because i, too, have been on the other side of this, wondering "do i say something or will it make it worse?" additionally, since i have been in that situation before, i know that it's not black and white. there are all sorts of factors i thought of when trying to decide what, when, and how to say something to someone who had experienced a loss. only now, being on the "wrong" side of this awkward situation, can i assure you: if you're not sure what to say, saying "i don't know what to say other than i am sorry for your loss" or "i just want you to know we've been praying for you" is a great place to start. if face-to-face contact is too much for you, send a card or an email, even. grieving parents want their child to be acknowledged because he means the world to them, even if he is yet to be born. and we want to know that our friends care about us and are praying for us. to not say anything at all might give the impression that you don't care.
however.....
2. use scripture carefully and avoid flippant greeting card-type responses. it may seem in conflict with #1 above, but it's true: even the most well-meaning scripture reference or famous (infamous?) quote can be hurtful. they can minimize the person's loss and undermine her feelings of grief. thankfully, we didn't hear it much, but occasionally someone might say to us, "everything happens for a reason", "God won't give you more than you can't handle" and "jonathan must have been so special that God needed him in heaven." whether the scripture or quote is true or not (i'm quite sure that the God of the universe does not need anyone or anything), sometimes such a response can make the person's suffering seem like an open and shut case. as if by saying something like this will fix everything and help the grieving person to just move on with her life.
again, i am talking to myself here. in the past, i might be the one to say something like that. my condolences were always genuine, but i admit, probably sounded a bit flippant to my friend. honestly, i don't like knowing my friend is suffering and there's nothing i can do about it. so i offer a verbal band-aid. and i have come to realize that the band-aid was more for me than for my friend. what my friend needed was for me to empathize with her, not offer words lightly. of course, i understand it's all completely well-meaning when these words are said to me too, but i just want to emphasize that there is nothing you can say to make it all go away for your friend. once this is understood, i think that the pressure to say something to "help" will be alleviated and it will be easier to understand what she really needs to hear: "i don't know what you're going through, but i'm here for you."
as far as scripture is concerned, the ones that spoke most to my heart and brought me great encouragement were ones about God being near to me and providing peace, love, and comfort. it was far less about His will, His purposes, the ultimate good, etc. because, quite frankly, i was not ready to embrace those truths for awhile. God's Word is living and active and has amazing power to heal a broken heart. but just be aware that your friend's heart may not be in a place where she can receive it yet.
3. it's OK to ask questions after your friend receives a poor prenatal diagnosis. however, it is important that the questions are sensitive to the situation. while i was pregnant with jonathan, we welcomed questions because we understood his disorder was so rare. it's just natural for people to be curious about the disorder, why we made the decision to carry him, what the doctors say about it, etc. we wanted people to know, especially so that they could anticipate and discern how to pray for us. however, avoid asking your friend when she is going to have another baby, especially while she is still pregnant with a baby not expected to survive. unless she is a super-close friend, this question is more appropriate several months after your friend's loss.
4. there is no timetable for grief. i've found that some people tend to think of losing a baby as not as difficult than losing an older child, parent, etc. perhaps they feel that way because the time spent with the baby is much more brief and therefore there is not as strong a bond.
however, a loss is still a loss, and people grieve differently. i feel that even though i only had 32 weeks, 4 days, 19 hours and 40 minutes with jonathan, there is also the great loss of not being able to experience life with him; to not see him grow up over the years, get married, have his own family, etc. there is much anguish in "what could have been." there is certainly an empty hole in our hearts and in our family where jonathan should be. it's not something that is easy to recover from, or that someone ever can.
therefore, the best way to help your friend is to understand that she is still grieving, whether it's been a day or a year or 10 years. she will have up days and down days. judging her by her depth or length of grief, or putting unrealistic expectations on her will only cause more harm than good. grieving is a hard place to be already and the last thing your friend needs is added pressure to "get better." instead, come alongside her by praying for her and letting her know you remember and you care (Romans 12.)
5. understand that grieving is hard work. whether she's expecting a loss or has just experienced a loss, just know that your friend is tired. scatterbrained. unorganized. possibly not her fun-loving self as much anymore.
the week that we got jonathan's diagnosis and the week after he was born and then died were obviously the hardest two weeks of my life. i couldn't sleep at all, and had to take sleep aids for those two weeks. for the six months or so that followed his diagnosis, i couldn't focus at all because my thoughts only revolved around one subject. thankfully, i have not had to take any other medications, but keep in mind that your friend might also be exhausted from pain meds, antidepressants, and more. there is just no way a normal person can function the same as before after experiencing such devastation. sure, your friend might seem to have it together just fine in public. but privately, she may have experienced a moment of grieving, and only by the grace of God was able to still make herself presentable in public. and that might just be her major accomplishment of the day.
6. offer specific help. when we first learned of jonathan's diagnosis, greg and i were zombies and could barely function outside of walking aimlessly around the house or vegetating on the couch. my mother immediately came to stay with us and help us with kate for a few days. my friends demanded to bring meals and we had plenty of offers to keep kate for us when necessary.
it was not just wonderful, it helped us survive that first week.
throughout the rest our journey, we continuously had offers of help. my friends did something for me that was invaluable: think for me. they put themselves in my shoes and anticipated what i would need before the need even arose. by the time we learned that i would be induced with only a couple of hours notice, kate had a place to sleep that night, emails were sent out and phone calls made on our behalf, food was brought to the hospital, and friends dropped everything (including work) in order to be available to us. one of my friends bought a head of cabbage for me (some of you know what i mean by that) and the day before the funeral, one of my friends even went out and purchased spanx underwear for me so that i could squeeze into my funeral outfit. seriously. (now those are good friends!) so anticipating your friend's needs and preparing for them in advance is something that is incredibly helpful, especially for someone who can barely think for herself.
7. meals are the way to a friend's heart. we were blessed with meals for more than a month after jonathan died, and they were some of the most amazing gifts to us. i don't like to cook much anyway, and especially not after experiencing such a devastating loss. i just don't think i could have processed the steps necessary to complete a meal. i am so, so thankful i didn't have to! it was a wonderful ministry to our family.
some tips on bringing meals:
i. first see if there is someone in charge of a meal list (from church, etc.) speak directly to them so that you don't make your friend think more than she has to. if not....
ii. don't just ask if you can, insist on bringing a meal. if given the choice, she might turn it down so as not to create a hardship for you. if you really want to, then she really won't mind if you do.
iii. ask ahead of time what type of foods to bring or not. there may be allergies to certain foods, or there may be too much of a certain food (ie, lasagna) that has already been brought. i'm not picky about this, and thankfully my family will eat about anything. but just something to keep in mind for your friend.
iv. bring meals in containers that don't have to be returned, ie, aluminum pans, ziploc storage containers. a grieving friend is too tired and scatterbrained to try to remember what dish goes to who. it's also less work for the meal preparer, in my opinion.
this reminds me of when we brought a meal to friends who had lost their baby almost a year before we lost jonathan. i brought everything to them in disposable pans, etc. except for the bamboo tray i carried it on. she kept trying to remember to bring the tray back to me. then, after jonathan died, she offered to bring a meal and told me she even had a "special tray" to bring it on. "keep it," i told her. "or better yet, burn the tray!" because we joked how the tray was cursed and we didn't want to keep passing the tray back and forth or give it to anyone else. sometimes you just have to make light of things.
v. when you bring a meal, keep in mind that it may not be a good time for visiting. you'll just have to feel out the situation yourself whether or not your friend desires company. again, people grieve differently, so don't take it personally if you get the vibes that you need to drop the meal off and leave. greg and i didn't mind people staying and visiting, but we didn't feel like crying with anyone. so a friend sent an email out to those on our meal list that our house was a "no-cry zone." and thankfully we didn't have any violators. i say that with a smile and appreciation.
vi. tell your friend not to worry about thank-you notes. the last thing she needs to worry about is writing more thank-yous. she has probably already written a hundred by now anyway. it's not that she's being rude, because trust me, she appreciates you and the meal very much. you probably already know this, so why bother her with a piece of paper?
8. pursue her. include your friend on group outings, playdates, etc, just like before. i know from my experience that i was usually too exhausted or overwhelmed to initiate any get-togethers with my friends. i practically depended on them to invite me and then remind me of any gatherings before they happened. i didn't always return phone calls or emails. but i did appreciate each and every one of them. also keep in mind that she may turn you down, but don't take it personally. it takes a lot of effort to "re-emerge" into life as she knows it after a loss. things are different and that's just the way it is. for me, sometimes there is guilt in having too much fun. or, it's almost a burden to go somewhere where there will be a large group of people and wonder if i have to tell someone new about what happened to jonathan.
for example, i just joined a large women's bible study at church. at first i worried about participating in a group icebreaker exercise, like having to tell the group what my name is and a little bit about me such as how many kids i have and what their names are. because my name is lauren and i have TWO kids, kate and jonathan. kate will be the only one you see though, because jonathan is with Jesus. ....it's just not fun to say those words even though they are true. i know i don't have to always mention jonathan, but for now it seems as if i am dishonoring him if i leave out that detail.
my friends have done a great job (without even being asked) of gently informing new friends and aquaintances about jonathan so that i don't have to. that's right, i am glad they are talking about me behind my back and i invite them to continue to do so. :) i definitely feel more comfortable in large group settings because of this. this might just be me, though.
9. after a loss, talk about and remember their child. i truly believe most grieving parents want to celebrate the memory of their child long after a loss, and they like to do it by talking about him/her.
i have to talk about jonathan to someone at least once a day. most of the time the conversation is only between God and me, but his name has to be said or it feels like my heart will explode. this is also why i continue to blog about him.
with my really close friends, i feel completely free to bring up jonathan, and i think that they also feel free to bring up jonathan. that's what makes them so special. they get it.
so don't hesitate to talk to your friend about her baby. ask how she's really doing, and spend a few moments remembering him. it doesn't have to be a cry-fest or anything. but it only takes a few minutes to lift your friend's spirits the rest of the day.
something else that means a lot is knowing that friends and loved ones visit jonathan's grave and sometimes even leave flowers. it is such a wonderful, thoughtful gesture. i also have a sweet friend who lets me know each month when the 8th rolls around that she's thinking of me, praying for me, and she takes the time to encourage me on that day.
10. there is enough grace for all of us. my final thought is that, after saying all of the above, i know it's not all about me, me, me. as much as it hurts to lose a child, i know i'm not the only one who is experiencing some sort of pain. therefore, i work hard on remembering that just because someone does not do or say something i think they should, doesn't mean that it's wrong or that they don't care. God is very generous with grace for those who are suffering. that grace, being a gift without expectation of recompense, is something that we should be willing to share freely with others, specifically when dealing with people and situations that are often not easy or pleasant. i am very thankful for this, having been on the receiving end much more often than the giving end of grace.
*****
of course i'm no expert, so i'd love it if you left a comment with any further ideas, thoughts, or introspections to add to this post.
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