i have wanted to write a blog about a sweet little girl named lia. her family blessed us with things to auction when abigail was having surgery. and they could relate to life with medically stuff; because they lived it as well. and now, they are in need of help.
however, there are some perimeters around what can be said, and what can't. and i was having a hard time figuring out how to say it all. but, then, my friend, lezlie, wrote a post about lia. and so, instead of trying to hash it all out again, i am asking, please, go read the post. pray for this family, and donate if you are able.
a story about lia.
thank you all!
Tuesday, August 28, 2012
Sunday, August 26, 2012
the ugly guilt.
i had just spent 96 days living in the hospital with my infant. my emotions were still pretty raw. my heart and mind were still working on wrapping themselves around the last few months of life. i had been through highs and lows i didn't know existed. the first few weeks were me trying to figure out how to explain to a three year old death, and praying i didn't have to explain it. once that large sweep of emotions passed, i settled into my position as warrior, fighting for my daughter.
that description might sound odd to some. sure, we were at this amazing children's hospital, and yes, they had kept my daughter alive. but once the super scary part was over, there were doctors with different opinions, wanting to do different test, try different routes, and i was the only consistent in her life. a new week meant a new doctor on service. we had four different residents in our stay in the picu. i was the one who knew everything, her meds, her allergies, her history, and where we were to be going.
but all this was done. i was now standing in a grocery store for the first time in three months. it was overwhelming for lots of reasons. i couldn't remember where things were, and there were so many other people there. i looked up to see someone familiar. we aren't best friends-more acquaintances. we've had quite a few conversations. we added one more.
i don't remember what all was said in the conversation. at that point all i kept hearing, from everyone, was 'i couldn't have done it.' 'i don't know how you did it.' 'you are amazing.' but that's now what she said. she spoke to my heart in a way i didn't know i needed. she said she had been following the story, watching it unfold on facebook, reading post, and praying. and a few small tears fell down her face as she talked about how amazing it was to watch us step up to the plate and fight for one of the least of these.
i still cry when i write about it now. while we still aren't interested in the praise and glory people like to give us, she spoke what our hearts were about when we signed up to adopt a child with Down syndrome.
for whatever reason, the last few weeks have been the first time since our stay i have really felt the weight of all that happened there. while we were inpatient i didn't have time to focus on the craziness of it all. i was trying to focus on shilo, and abigail, and jason. i took care of myself just fine. but i didn't have time for deep reflection. i didn't have the emotional energy. but now, i have time. and whether i want to or not it all seems to be pouring over me.
the honest truth, that i have admitted to only jason thus far, is i needed to be reminded that day in the grocery store, that i did a great job of being shilo's voice. the large amount of guilt that i still feel over shilo getting sick overshadows any patting myself on the back i might want to do. i know exactly how it happened. and despite being intelligent enough to know better, i go over it in my head, and know exactly what to do differently to prevent the whole hospital stay.
but no matter how much i go over it, i can't prevent it. i can't undo it, and i can't get back those three months of life. so i, instead, cry, when i see pictures of shilo taking a bottle. she should still be able to take a bottle. i can barely click through the pictures from the hospital, with tubes, a swollen little, and the almost visible lie, lingering in the room, telling me that if i had just.....then she wouldn't have ended up there in the first place.
we are working on learning as much american sign language, as we can, as quickly as possible, to communicate with shilo more. so i often youtube songs from church to try to be able to sign to her there. i sit in the back row so we don't draw attention, and shilo watches, mesmerized as i make a clumsy attempt at signing to her. anytime we sign, it almost always brings a smile to her face.
so today, even though i sat in the back, more people came in after me, and rows of chair were added behind me. i very self-consciously signed to her anyway. and i received an e-mail later that contained this, ' I was really touched this morning watching you signing and loving on Shilo. '
the honest truth is i feel like i have failed shilo. i feel like she would be much further along, she would be g-tube free (and eating baby foods well), and that she would have already had hearing aids, if i had just done a better job protecting her from getting sick. but every time i begin to live in the guilt, someone comes along and says something simple, plain, and beautiful. and with it, i know, that God chose me to be shilo's mama. it doesn't take away all the guilt, but it does remind me that i am doing some things well. and that is a much easier place to rest. and i pray, with time, i will wade through all of the pain, and guilt, and come out on the other side with some new amazing perspective.
that description might sound odd to some. sure, we were at this amazing children's hospital, and yes, they had kept my daughter alive. but once the super scary part was over, there were doctors with different opinions, wanting to do different test, try different routes, and i was the only consistent in her life. a new week meant a new doctor on service. we had four different residents in our stay in the picu. i was the one who knew everything, her meds, her allergies, her history, and where we were to be going.
but all this was done. i was now standing in a grocery store for the first time in three months. it was overwhelming for lots of reasons. i couldn't remember where things were, and there were so many other people there. i looked up to see someone familiar. we aren't best friends-more acquaintances. we've had quite a few conversations. we added one more.
i don't remember what all was said in the conversation. at that point all i kept hearing, from everyone, was 'i couldn't have done it.' 'i don't know how you did it.' 'you are amazing.' but that's now what she said. she spoke to my heart in a way i didn't know i needed. she said she had been following the story, watching it unfold on facebook, reading post, and praying. and a few small tears fell down her face as she talked about how amazing it was to watch us step up to the plate and fight for one of the least of these.
i still cry when i write about it now. while we still aren't interested in the praise and glory people like to give us, she spoke what our hearts were about when we signed up to adopt a child with Down syndrome.
for whatever reason, the last few weeks have been the first time since our stay i have really felt the weight of all that happened there. while we were inpatient i didn't have time to focus on the craziness of it all. i was trying to focus on shilo, and abigail, and jason. i took care of myself just fine. but i didn't have time for deep reflection. i didn't have the emotional energy. but now, i have time. and whether i want to or not it all seems to be pouring over me.
the honest truth, that i have admitted to only jason thus far, is i needed to be reminded that day in the grocery store, that i did a great job of being shilo's voice. the large amount of guilt that i still feel over shilo getting sick overshadows any patting myself on the back i might want to do. i know exactly how it happened. and despite being intelligent enough to know better, i go over it in my head, and know exactly what to do differently to prevent the whole hospital stay.
but no matter how much i go over it, i can't prevent it. i can't undo it, and i can't get back those three months of life. so i, instead, cry, when i see pictures of shilo taking a bottle. she should still be able to take a bottle. i can barely click through the pictures from the hospital, with tubes, a swollen little, and the almost visible lie, lingering in the room, telling me that if i had just.....then she wouldn't have ended up there in the first place.
we are working on learning as much american sign language, as we can, as quickly as possible, to communicate with shilo more. so i often youtube songs from church to try to be able to sign to her there. i sit in the back row so we don't draw attention, and shilo watches, mesmerized as i make a clumsy attempt at signing to her. anytime we sign, it almost always brings a smile to her face.
so today, even though i sat in the back, more people came in after me, and rows of chair were added behind me. i very self-consciously signed to her anyway. and i received an e-mail later that contained this, ' I was really touched this morning watching you signing and loving on Shilo. '
the honest truth is i feel like i have failed shilo. i feel like she would be much further along, she would be g-tube free (and eating baby foods well), and that she would have already had hearing aids, if i had just done a better job protecting her from getting sick. but every time i begin to live in the guilt, someone comes along and says something simple, plain, and beautiful. and with it, i know, that God chose me to be shilo's mama. it doesn't take away all the guilt, but it does remind me that i am doing some things well. and that is a much easier place to rest. and i pray, with time, i will wade through all of the pain, and guilt, and come out on the other side with some new amazing perspective.
Thursday, August 23, 2012
...and the saga continues.
yes, my friends. it's another chapter in our hearing aid story. if you haven't already read about it you can go back and read the first and second parts to catch up. the piece of paper had now been halted to prevent someone from paying for something that should not be paid for.
in my first post i mentioned that the doctors thought that bone conduction hearing aids are what would work best in bringing shilo some degree of hearing. so i found a local doctor who said they could do them (if you remember, she can't do them-at least not what is needed for a very small child). however, shilo's left ear is slightly better than her right. she still can't hear us, but the testing showed less loss in that ear. so the doctor we saw locally said she thought she could bring shilo's hearing up into the normal levels. normal. i was SHOCKED. shilo has what is called mixed hearing loss-so it's both conductive and sensorineural hearing loss. from what i understood, with the degree, and the mixed loss, we would never see normal with her hearing. so we had a mold made of her ear and the hearing aid was ordered.
monday we had a follow up e.n.t. appointment for post ear tube placement. we knew they would schedule some sort of imagery testing to see if the conductive hearing loss is something that could be surgically repaired. and we knew he would be the doctor that sent the referral for her bone conduction hearing aid. so i asked him about the bhe (behind the ear) aid we had ordered. he said, 'if you try to bring her hearing up to a normal level, it will be extremely painful for her. she will never have normal hearing. she needs baha (the bone conduction aids) on both sides.
i left monday with my head spinning. two different e.n.t. doctors, and an audiologist at riley all said bahas. one audiologist said bhe. i talked it through with jason, and a few other people, and still just felt really uncomfortable with what our best choice was. do we walk away from the person giving us some hope of normal hearing? was she spewing rainbows and sunshine onto a situation because that's what she does? was she choosing the bhe aids because she would benefit monetarily if we chose to go with those (the other three specialist will not be doing her aids so they gain nothing from whatever our choice is). i don't want rainbows and sunshine. i want the truth. and if the truth is that a bhe aid will bring her to the same level of hearing as a baha, then why would we go with a hearing aid that is tons more work (remoldings every time her ears grow-which is a lot on a small child. feedback issues. so much more work) instead of the one that we can use and will stay the same as she grows.
so at the end of the day i decided to send an e-mail out to my father in law. he's an audiologist. he works at a v.a. hospital, which is obviously different than pediatrics, but he's smart, and i know he will give it to us straight. and he did. it turns out that we are going with the baha aids. i wish i had known in july what i know now. i would have already had a referral and our appointment would have been much earlier.
so it looks like shilo may get to hear by her first birthday if all things pan out well-and she will have an mri in early september to see if they can figure out what caused the conductive hearing loss. i also get to figure out how to make a diplomatic attempt at saying to private audiologist-what were you thinking? because two e.n.t. and two audiologist have all said the same thing-the opposite of what you are telling us. are you going to continue to stick with what you originally said or do you want to change your story?
i know that some doctors either believe that patients are uninformed or think that patients should take what they say as 'word.' we believe that information and intelligence are available, and that we will make the choices we believe are best for our daughters, even if it means fighting with a doctor who made a really poor call.
in my first post i mentioned that the doctors thought that bone conduction hearing aids are what would work best in bringing shilo some degree of hearing. so i found a local doctor who said they could do them (if you remember, she can't do them-at least not what is needed for a very small child). however, shilo's left ear is slightly better than her right. she still can't hear us, but the testing showed less loss in that ear. so the doctor we saw locally said she thought she could bring shilo's hearing up into the normal levels. normal. i was SHOCKED. shilo has what is called mixed hearing loss-so it's both conductive and sensorineural hearing loss. from what i understood, with the degree, and the mixed loss, we would never see normal with her hearing. so we had a mold made of her ear and the hearing aid was ordered.
monday we had a follow up e.n.t. appointment for post ear tube placement. we knew they would schedule some sort of imagery testing to see if the conductive hearing loss is something that could be surgically repaired. and we knew he would be the doctor that sent the referral for her bone conduction hearing aid. so i asked him about the bhe (behind the ear) aid we had ordered. he said, 'if you try to bring her hearing up to a normal level, it will be extremely painful for her. she will never have normal hearing. she needs baha (the bone conduction aids) on both sides.
i left monday with my head spinning. two different e.n.t. doctors, and an audiologist at riley all said bahas. one audiologist said bhe. i talked it through with jason, and a few other people, and still just felt really uncomfortable with what our best choice was. do we walk away from the person giving us some hope of normal hearing? was she spewing rainbows and sunshine onto a situation because that's what she does? was she choosing the bhe aids because she would benefit monetarily if we chose to go with those (the other three specialist will not be doing her aids so they gain nothing from whatever our choice is). i don't want rainbows and sunshine. i want the truth. and if the truth is that a bhe aid will bring her to the same level of hearing as a baha, then why would we go with a hearing aid that is tons more work (remoldings every time her ears grow-which is a lot on a small child. feedback issues. so much more work) instead of the one that we can use and will stay the same as she grows.
so at the end of the day i decided to send an e-mail out to my father in law. he's an audiologist. he works at a v.a. hospital, which is obviously different than pediatrics, but he's smart, and i know he will give it to us straight. and he did. it turns out that we are going with the baha aids. i wish i had known in july what i know now. i would have already had a referral and our appointment would have been much earlier.
so it looks like shilo may get to hear by her first birthday if all things pan out well-and she will have an mri in early september to see if they can figure out what caused the conductive hearing loss. i also get to figure out how to make a diplomatic attempt at saying to private audiologist-what were you thinking? because two e.n.t. and two audiologist have all said the same thing-the opposite of what you are telling us. are you going to continue to stick with what you originally said or do you want to change your story?
i know that some doctors either believe that patients are uninformed or think that patients should take what they say as 'word.' we believe that information and intelligence are available, and that we will make the choices we believe are best for our daughters, even if it means fighting with a doctor who made a really poor call.
Saturday, August 18, 2012
VACATION!
so last week we spent our time in the beautiful appalachian mountains of virginia. we stayed in a cabin in natural tunnel state park. we've been to other places that we like, and even go back to. this, by far, was one of the best accomodation wise, and felt extremely relaxing. they worked with us for shilo's oxygen delivery and with the special ups delivery we had to get because our home health delivery company flubbed up our stuff and we didn't have enough supplies for the week. they were super friendly about it as well.
okay, moving on from the advertisement section, here is our week in a few sentences. we hung out in the cabin when it was rainy. we hiked in the mornings. we swam in the afternoons. we cooked around a campfire. we saw deer, turkeys, blue taled 'stinks' (abigail's word for skinks), and stunks (abigail's word for skunks, and a much more fitting one). we went down to the natural tunnel and got to see a train going through. we rode a chairlift. there were two sets of bunkbeds in abigail's room, and one naptime we all four slept on a different 'bump' (also abigail's word). we tried out shilo and abigail sharing a room, and it went so well, we made it official at home too. we had lots of down time as a family, and just jason and i after the girls were in bed. we definately came back feeling refreshed. i'll throw in a few pictures from the week (the two of our whole family were taken by stranger, and we have a digital slr, so they aren't the best shots, but we are still glad to have some with all of us), and leave you all booking your next vacation here as well. okay, maybe not, everyone else seems to like beaches, but if you like the mountains.....
this is all i will add. and just a little disclaimer because someone always asks. shilo is still technically on oxygen. we had a borrowed pulse ox and had just seen her pulmanologist the friday before, so we used it some, but didn't need it much.
okay, moving on from the advertisement section, here is our week in a few sentences. we hung out in the cabin when it was rainy. we hiked in the mornings. we swam in the afternoons. we cooked around a campfire. we saw deer, turkeys, blue taled 'stinks' (abigail's word for skinks), and stunks (abigail's word for skunks, and a much more fitting one). we went down to the natural tunnel and got to see a train going through. we rode a chairlift. there were two sets of bunkbeds in abigail's room, and one naptime we all four slept on a different 'bump' (also abigail's word). we tried out shilo and abigail sharing a room, and it went so well, we made it official at home too. we had lots of down time as a family, and just jason and i after the girls were in bed. we definately came back feeling refreshed. i'll throw in a few pictures from the week (the two of our whole family were taken by stranger, and we have a digital slr, so they aren't the best shots, but we are still glad to have some with all of us), and leave you all booking your next vacation here as well. okay, maybe not, everyone else seems to like beaches, but if you like the mountains.....
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| notice shilo watching her. i fear for our future. |
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| mama and abigail snuggles. |
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| in front of the tunnel |
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| enjoying my little. |
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| we did a night outside where we took turns doing a 'dancy dance' (from yo gabba gabba). this is abigail doing the snorkel. |
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| papa and abigail helping shilo dip her toes in the water. |
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| smiling at mama bouncing her. |
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| this is what abigail did while jason and i enjoyed.... |
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| this view. |
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| an attempt to get a picture with them both. abigail was not in the mood. |
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| the tunnel from up high. |
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| at one of the highest points in the park. |
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| abigail did this slide, one time. she didn't like it, but we were proud of her for being brave enough to try. |
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| snapping green beans with mama. |
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| shilo had been looking forward to relaxing in the hammock as well. |
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| practicing head control (and rocking it). |
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| super cute. super onery. |
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| papa and abigail playing cars while it was raining. |
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| this is how abigail 'hiked.' it goes much faster this way. |
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| she was afraid of the water the first day, and by the end of the week was swimming around 15 yards on her own. |
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| some more outside dancing (i'm sure our neighbors thought we were the cool family). |
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| shilo enjoyed her time at the pool. |
this is all i will add. and just a little disclaimer because someone always asks. shilo is still technically on oxygen. we had a borrowed pulse ox and had just seen her pulmanologist the friday before, so we used it some, but didn't need it much.
Tuesday, August 14, 2012
a piece of paper
last week we went on vacation. it was fantastic. and hopefully in the next few days i will write a little more and post some pictures. but today's post, is once again, dedicated to the process of helping shilo hear.
i wrote a post here about the ridiculousness that has been trying to get shilo's hearing tested and get her hearing aids.
so a couple of weeks ago, jason, shilo, and i met with an audiologist. i called their office multiple times before hand (like a crazy mom-don't judge me, you'll understand as you read on) to make certain they understood that we weren't needing regular hearing aids, but bone conduction aids. they understood. they could do those. great. because i definitely don't want to waste my time seeing someone who can't help, and for my child to have to go even longer without being able to hear.
so anyway, we meet with the audiologist. i didn't love her. i didn't hate her. she would do. i was annoyed that she obviously hadn't looked over her file until the five minutes before she called us back to talk to us. but, she did say she thought that it might be possible for her left ear to be aided with a normal (very high power) hearing aid. she doesn't do bone conduction hearing aids (enter a long string of horrible words for the woman who said they could do them). so we got an ear mold and made a follow up appointment for yesterday.
so let me explain a little further before i talk about yesterday's appointment. first of all, shilo can hear nothing. okay, i guess, from what they tell us, that if we were at an airport, it's possible she could hear an airplane taking off. but as far as voices, music, toys, there is nothing. secondly, shilo's hearing aids are covered by our states early intervention program. her insurance would cover them as well, but by being part of early intervention, and having them done, we also have had a parent advocate, and a deaf role model on board in helping our family learn sign, and things that are important for a child who is deaf (that i, as a hearing person, had never thought of).
so yesterday, i load abigail in the car with a promise of game time on my kindle fire during the appointment. i am feeling emotional because there is a very real possibility that my daughter will hear for the first time. how cool is that.
we arrive at the office and walk in. the office manager (the one who assured my they could do bone conduction hearing aids) says, 'oh didn't you get my message?' ummm....i was on vacation, and i checked messages upon arriving home, but no, didn't get it. apparently there is a paper that i haven't signed yet, and then our doctor needs to sign, and then we have a ten day wait period before i can get her hearing aid.
they have her hearing aid in their office. it's sitting there, waiting on a piece of paper in order for me to be able to get it. i held it together as we walked out the door.
abigail started crying because she didn't understand why we were leaving (and why she wasn't playing the kindle). shilo is puking on my shoulder. i am standing in the parking lot losing it. i had hoped, i had longed, and i had looked forward to my daughter hearing. and my heart felt like it had, had all the screwing with it could take. i considered going back in, and telling them i would just write the damn check for the thing because my kid needs to hear. yes, it's 'just a delay.' we will eventually get the hearing aid. but, my daughter is nine months old. she has significant cognitive and developmental delays, and she can't hear. we aren't even certain that this hearing aid will work for her (and are waiting on a referral to another doctor for her bone conduction aid for the other ear).
someone implied not too long ago that the reason jason and i have taken the whole deaf thing so well is because she is adopted so we aren't as disappointed, you know, because 'she's not our own.' let me make known that as a family who loves music and books, it is extremely sad to me that MY DAUGHTER, MY OWN CHILD, can't hear. it's hard to know that even with aids, she likely will never have full hearing.
as i laid her and abigail down for a nap today, and sang a song to them, i started crying again. she was supposed to be able to hear me today. i was supposed to enjoy her learning to respond to her name, watching me as i sing, and smiling at me. instead she looked at the wall because she had no idea that there was noise coming out of my mouth.
i am not certain how to fix our system of red tape, referrals, testing, re-testing, and stupid missing signatures. i do know that there is something extremely wrong when all that is standing between my nine month old getting her hearing aid, or not, is a piece of paper. one that i'll sign a hundred times just to make sure she gets what she needs.
i wrote a post here about the ridiculousness that has been trying to get shilo's hearing tested and get her hearing aids.
so a couple of weeks ago, jason, shilo, and i met with an audiologist. i called their office multiple times before hand (like a crazy mom-don't judge me, you'll understand as you read on) to make certain they understood that we weren't needing regular hearing aids, but bone conduction aids. they understood. they could do those. great. because i definitely don't want to waste my time seeing someone who can't help, and for my child to have to go even longer without being able to hear.
so anyway, we meet with the audiologist. i didn't love her. i didn't hate her. she would do. i was annoyed that she obviously hadn't looked over her file until the five minutes before she called us back to talk to us. but, she did say she thought that it might be possible for her left ear to be aided with a normal (very high power) hearing aid. she doesn't do bone conduction hearing aids (enter a long string of horrible words for the woman who said they could do them). so we got an ear mold and made a follow up appointment for yesterday.
so let me explain a little further before i talk about yesterday's appointment. first of all, shilo can hear nothing. okay, i guess, from what they tell us, that if we were at an airport, it's possible she could hear an airplane taking off. but as far as voices, music, toys, there is nothing. secondly, shilo's hearing aids are covered by our states early intervention program. her insurance would cover them as well, but by being part of early intervention, and having them done, we also have had a parent advocate, and a deaf role model on board in helping our family learn sign, and things that are important for a child who is deaf (that i, as a hearing person, had never thought of).
so yesterday, i load abigail in the car with a promise of game time on my kindle fire during the appointment. i am feeling emotional because there is a very real possibility that my daughter will hear for the first time. how cool is that.
we arrive at the office and walk in. the office manager (the one who assured my they could do bone conduction hearing aids) says, 'oh didn't you get my message?' ummm....i was on vacation, and i checked messages upon arriving home, but no, didn't get it. apparently there is a paper that i haven't signed yet, and then our doctor needs to sign, and then we have a ten day wait period before i can get her hearing aid.
they have her hearing aid in their office. it's sitting there, waiting on a piece of paper in order for me to be able to get it. i held it together as we walked out the door.
abigail started crying because she didn't understand why we were leaving (and why she wasn't playing the kindle). shilo is puking on my shoulder. i am standing in the parking lot losing it. i had hoped, i had longed, and i had looked forward to my daughter hearing. and my heart felt like it had, had all the screwing with it could take. i considered going back in, and telling them i would just write the damn check for the thing because my kid needs to hear. yes, it's 'just a delay.' we will eventually get the hearing aid. but, my daughter is nine months old. she has significant cognitive and developmental delays, and she can't hear. we aren't even certain that this hearing aid will work for her (and are waiting on a referral to another doctor for her bone conduction aid for the other ear).
someone implied not too long ago that the reason jason and i have taken the whole deaf thing so well is because she is adopted so we aren't as disappointed, you know, because 'she's not our own.' let me make known that as a family who loves music and books, it is extremely sad to me that MY DAUGHTER, MY OWN CHILD, can't hear. it's hard to know that even with aids, she likely will never have full hearing.
as i laid her and abigail down for a nap today, and sang a song to them, i started crying again. she was supposed to be able to hear me today. i was supposed to enjoy her learning to respond to her name, watching me as i sing, and smiling at me. instead she looked at the wall because she had no idea that there was noise coming out of my mouth.
i am not certain how to fix our system of red tape, referrals, testing, re-testing, and stupid missing signatures. i do know that there is something extremely wrong when all that is standing between my nine month old getting her hearing aid, or not, is a piece of paper. one that i'll sign a hundred times just to make sure she gets what she needs.
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