Too much. Too loud. Too vocal. Drawing attention. Advocating loudly. Never satisfied.
In the space of a few weeks, these words became loud in my mind. Back to school meant lots of conversations, text, and e-mails. Needs. Disagreeing with people, and working really hard to come across diplomatically. My mind bent over gasping for air while trying not to throw up. Not because it was bad. Or, received poorly. But, because advocating is hard. And, scary. Necessary. While invoking fears that if things are pushed too hard, too loudly, or we just take up too much space, my children could suffer the repercussions. Part of me wants to apologize for speaking up at all. Making waves. I can feel it. It's too much space out of a whole lot of kids with needs. We're not staying in our area.
A trip to the park buzzing over the excitement of a new swing. One I can roll a wheelchair up on, and watch her lean back and smile in the breeze. I pull up, and immediately feel all the blood rush to my face. They've built a swing. A whole separate area for kids with disabilities. I can't believe it. How did this happen? So I speak up. I arrange meeting and have hard conversations. I listen, and try to understand. I tell them what I want, knowing the cost is astronomical in a Midwestern city that has lost its' factories and is struggling to survive. And, I know, I'm taking up too much space in the financial agenda of a city.
We're out. Little is excited. She makes her noises. Grunty and screechy. Over and over. It's loud. People move away or stare. They don't know how to respond to it. She's just communicating. We're used to it. But, all of a sudden, I know. Too much space. We are occupying more than our share of the noise level.
Sunday morning. Front row during worship because that's where little wants to be. She can see all the instruments. The singers. There's room to dance. And, a few times, she makes her way on stage and just sits there, watching everyone, dancing, and sometimes even singing. I breathe deep and purposeful to slow my heart, thankful I can't see anyone behind me. She darts quickly to make an attempt at grabbing the guitar, and I sprint on stage and grab her. This sort of thing repeats a few times, amidst her other antics of trying to get me to hang her upside down, do flips, and use me as a jungle gym. I can feel it. Sweat is starting to pour out of me. We're taking up more than our share of space. Drawing attention away from the things people want to be focusing on.
I drop little off at Sunday school, and slink into the back of the church. The weight of the past week of advocating, and feeling too much settles in. I'm self conscious from the worship time, and uncertain whether bringing her in for it, no matter how much she begs, is truly the right thing to do. Our pastor stands up, talks a little about the set up of Sunday school, who goes where, when. And, out loud, in front of everyone, welcomes my daughter by name to be part of worship as she sees fit.
The tears are no longer staying just behind the surface. They spill out onto my cheeks. I'm reminded how long it took for people like little to be allowed any space in society at all. Their space used to be one that hid them away. Gave them less area than was theirs. Took a family, an education, self worth, outdoors, human interaction, dignity, and at times, their lives.
It's okay for her to take up more space now. To grab back what was denied so many before her. To loudly declare that she is alive, and has worth. This is her time. Her place. And, we will be here, taking up more than our share of space.
Showing posts with label Jesus. Show all posts
Showing posts with label Jesus. Show all posts
Saturday, August 18, 2018
Sunday, December 17, 2017
riff raff
A few weeks ago a woman, a stranger, showed up at my door needing help. The story is not entirely mine to tell. But, I can tell you that the entire interaction between the police department and her left me breathless. I am quick to stand in the gap for someone being mistreated. And, that's the role I jumped into.
At the end of the interaction, one of the officers came back in my home to caution me against allowing riff raff in my home. The woman I helped had just been taken from my home by ambulance with hypothermia. The whole thing felt surreal. But, those words echoed through my soul for days to come. Every time I remembered them, a lump welled up in my throat. Riff raff? Really, a human, in need of help, and what you saw was riff raff?
Tonight, I sat with my family to read a chapter from the Jesus storybook bible. We light our advent candles, I read a story, we all read together Mary's song from Luke, then listen to a related song while the kids draw their interpretations of some part of the story.
Tonight's story caught my breath though, and the image of a woman in my living room flashed through my head.
"You see, people thought shepherds were nobodies, just scruffy old riff raff.
But God must have thought shepherds were very important indeed, because they're the ones he chose to tell the good news to first."
When Jesus came, the first people God was like, 'hey, come look at my son' to were the riff raff. They were the woman left in abandoned houses to die. They were the homeless men and women we avoid eye contact with because we're uncomfortable. They were those with cognitive delays that make us uncomfortable with their incoherent shrieks, and unabashed willingness to touch strangers.
I don't think it's because they had nothing else going on. I think it's much more likely that Jesus' family were seen as riff raff. Unwed mother. Physical laborer for a father. Very few people are going to show up to worship the king of riff raff. Unless you go and find others in that some lowly position. They'll have ears to hear. They'll have eyes to see. And, they'll have no qualms falling on their face in worship since they aren't worried about position and reputation.
Blessed are the poor. The riff raff. The outcast. They're the first ones that God showed up to tell about His son. They're the ones with the kind of life position where they are most willing to leave their job on a hillside to find Christ. And, He seems to seek them out to make certain they know how loved they are by Him. Even if so many people around them fail to see their worth.
At the end of the interaction, one of the officers came back in my home to caution me against allowing riff raff in my home. The woman I helped had just been taken from my home by ambulance with hypothermia. The whole thing felt surreal. But, those words echoed through my soul for days to come. Every time I remembered them, a lump welled up in my throat. Riff raff? Really, a human, in need of help, and what you saw was riff raff?
Tonight, I sat with my family to read a chapter from the Jesus storybook bible. We light our advent candles, I read a story, we all read together Mary's song from Luke, then listen to a related song while the kids draw their interpretations of some part of the story.
Tonight's story caught my breath though, and the image of a woman in my living room flashed through my head.
"You see, people thought shepherds were nobodies, just scruffy old riff raff.
But God must have thought shepherds were very important indeed, because they're the ones he chose to tell the good news to first."
When Jesus came, the first people God was like, 'hey, come look at my son' to were the riff raff. They were the woman left in abandoned houses to die. They were the homeless men and women we avoid eye contact with because we're uncomfortable. They were those with cognitive delays that make us uncomfortable with their incoherent shrieks, and unabashed willingness to touch strangers.
I don't think it's because they had nothing else going on. I think it's much more likely that Jesus' family were seen as riff raff. Unwed mother. Physical laborer for a father. Very few people are going to show up to worship the king of riff raff. Unless you go and find others in that some lowly position. They'll have ears to hear. They'll have eyes to see. And, they'll have no qualms falling on their face in worship since they aren't worried about position and reputation.
Blessed are the poor. The riff raff. The outcast. They're the first ones that God showed up to tell about His son. They're the ones with the kind of life position where they are most willing to leave their job on a hillside to find Christ. And, He seems to seek them out to make certain they know how loved they are by Him. Even if so many people around them fail to see their worth.
Sunday, July 24, 2016
Truth
I didn't want to go to church today. I love being there. The body I'm part of almost always makes me leave feeling encouraged. But, I'm feeling a bit raw right now, and did not want to go because I knew what I would do. And I did.
This summer has been full. Appointments mixed with some fun things. But, the appointments have all felt heavy. This week we have two appointments. The following week we have an appointment. The following week we have an appointment. The following week Asher has surgery. And, in that mix, we're working on preschool and IEP stuff for Shilo. And, Abigail goes back to school. And, Jason has had so little time off. It's all just sort of building up. Which, in and of itself leaves me feeling overwhelmed.
But, the surgery is, quite honestly, the thing that is always right there at the front of my mind. I'm not any more nervous about the surgery than I have been others, my kids have had. I think he'll do great. I think he'll recover. I don't think there will be complications.
I don't want to do this. I don't want to drive to the hospital, and sit in a small room pre-surgery with a hungry baby. I don't want to sit in the waiting room for hours, while a nurse rounds every hour telling us how it is going. I don't want to see the healthy, active toddler I handed off, in pain, and with tubes and wires. Most of all, I don't want to hand him off. I don't want to give him to a doctor. I don't care how great she is. I don't care if she's done this surgery lots of times. I want to be anywhere but at the hospital, giving my third child over, for a major surgery. I'm tired of major surgeries. I'm tired of surgeries. I'm tired of doctors. I'm tired of diagnoses, and medical, and all of it.
So, as we sang this song today, I sobbed. And, during the sermon, I cried some more. And, at the end, when there was prayer, I sobbed again. I don't know when hard things will end for us. Perhaps, never, this side of heaven. I don't have anything great or beautiful to end this with. The things I might usually say here, while still true, are not how I feel at this moment. I want to be honest. And, I want people to know that it's okay to struggle without having the answers. It's also okay to let your friends struggle without trying to give them the answers. Sometimes, things are just hard.
I will leave you with a few pictures because it's been a little while since I've shared any.
Asher nursing while Shilo snuggles.
Fourth of July fun!
This summer has been full. Appointments mixed with some fun things. But, the appointments have all felt heavy. This week we have two appointments. The following week we have an appointment. The following week we have an appointment. The following week Asher has surgery. And, in that mix, we're working on preschool and IEP stuff for Shilo. And, Abigail goes back to school. And, Jason has had so little time off. It's all just sort of building up. Which, in and of itself leaves me feeling overwhelmed.
But, the surgery is, quite honestly, the thing that is always right there at the front of my mind. I'm not any more nervous about the surgery than I have been others, my kids have had. I think he'll do great. I think he'll recover. I don't think there will be complications.
I don't want to do this. I don't want to drive to the hospital, and sit in a small room pre-surgery with a hungry baby. I don't want to sit in the waiting room for hours, while a nurse rounds every hour telling us how it is going. I don't want to see the healthy, active toddler I handed off, in pain, and with tubes and wires. Most of all, I don't want to hand him off. I don't want to give him to a doctor. I don't care how great she is. I don't care if she's done this surgery lots of times. I want to be anywhere but at the hospital, giving my third child over, for a major surgery. I'm tired of major surgeries. I'm tired of surgeries. I'm tired of doctors. I'm tired of diagnoses, and medical, and all of it.
So, as we sang this song today, I sobbed. And, during the sermon, I cried some more. And, at the end, when there was prayer, I sobbed again. I don't know when hard things will end for us. Perhaps, never, this side of heaven. I don't have anything great or beautiful to end this with. The things I might usually say here, while still true, are not how I feel at this moment. I want to be honest. And, I want people to know that it's okay to struggle without having the answers. It's also okay to let your friends struggle without trying to give them the answers. Sometimes, things are just hard.
I will leave you with a few pictures because it's been a little while since I've shared any.
Asher nursing while Shilo snuggles.
Fourth of July fun!
Monday, February 1, 2016
Holding hope.
'that nothing grows on
but time still goes on
and through each life of misery
everybody's got a hold on hope
it's that last thing, that's holding me.'
some days, my hope lies strictly in heaven. the knowledge that all things will be made right gets me through. everything here seems too hard.
some days my hope lies closer to now. that things might not always be this hard. that here on earth, even, I might experience great things.
some days, I pour out my hopes in words to a God I still don't understand. I step out and take that chance that maybe this will be the time the words I speak change something. but, at very least He's listening.
everyday, in our hallway, I walk by hope. she used to sit in our kitchen window. then on a shelf behind our couch before we moved. and, in the midst of all the really hard things over the past years, at some point, her hand fell off. I glued it back on. then, she disappeared (with some help from little) behind the couch until we moved it out. her hand was gone. missing. no more.
but, that other arm, still clung tightly to the balloon with the word hope. it was held high above her head. like she still believed there were things to hope for. reasons to hope.
day after day, she stands there. atop the shelf. beneath her another tiny sign with the word hope. the one I found when we were waiting for Abigail. those three hard years. and when I walk by them, I think of my friends who recently had miscarriages, who have lost littles, or who desperately want to be parents, and aren't yet. and I stop, and plead on their behalves. because that is hard. so very hard. and holding onto hope during that. yeap. just all of it is hard.
and I look up at her, right above. my sister gave her to me when we were waiting on Abigail. but, for some reason, she doesn't remind me of the pain of waiting. she reminds me that even with hospital stays and looming surgeries, seizures, scoliosis, and the future of tumors, that I can still hope. I can hope in a God who will redeem all things. i can hope that things won't always feel like i'm in a battle. i can hope for peace. a little girls to walk. to find out all of the things going on with Asher. that big's NF will continue to stay mild. that when we walk through hard things, our marriage will remain strong. we will learn over and over what it means to remain faithful.
in my brokenness, missing parts of me that I've tried to glue back on in hopes that other people might not notice, i'll continue to hold up my banner of hope.
but time still goes on
and through each life of misery
everybody's got a hold on hope
it's that last thing, that's holding me.'
some days, my hope lies strictly in heaven. the knowledge that all things will be made right gets me through. everything here seems too hard.
some days my hope lies closer to now. that things might not always be this hard. that here on earth, even, I might experience great things.
some days, I pour out my hopes in words to a God I still don't understand. I step out and take that chance that maybe this will be the time the words I speak change something. but, at very least He's listening.
everyday, in our hallway, I walk by hope. she used to sit in our kitchen window. then on a shelf behind our couch before we moved. and, in the midst of all the really hard things over the past years, at some point, her hand fell off. I glued it back on. then, she disappeared (with some help from little) behind the couch until we moved it out. her hand was gone. missing. no more.
but, that other arm, still clung tightly to the balloon with the word hope. it was held high above her head. like she still believed there were things to hope for. reasons to hope.
day after day, she stands there. atop the shelf. beneath her another tiny sign with the word hope. the one I found when we were waiting for Abigail. those three hard years. and when I walk by them, I think of my friends who recently had miscarriages, who have lost littles, or who desperately want to be parents, and aren't yet. and I stop, and plead on their behalves. because that is hard. so very hard. and holding onto hope during that. yeap. just all of it is hard.
and I look up at her, right above. my sister gave her to me when we were waiting on Abigail. but, for some reason, she doesn't remind me of the pain of waiting. she reminds me that even with hospital stays and looming surgeries, seizures, scoliosis, and the future of tumors, that I can still hope. I can hope in a God who will redeem all things. i can hope that things won't always feel like i'm in a battle. i can hope for peace. a little girls to walk. to find out all of the things going on with Asher. that big's NF will continue to stay mild. that when we walk through hard things, our marriage will remain strong. we will learn over and over what it means to remain faithful.
in my brokenness, missing parts of me that I've tried to glue back on in hopes that other people might not notice, i'll continue to hold up my banner of hope.
Thursday, April 16, 2015
myself, when i am real.
a year ago I was starting to feel it. the wounds were scarring over nicely, and the pain had diminished. I could look at pictures of our past few years without crying. I could pray. that was a big one for me. the feeling that God had abandoned me in a hospital room for three months was fading.
but, everything backed up again with the birth of my son. I've spent the months asking why, and knowing i'll likely never get an answer. the distance returned. the trust diminished. I can happily spit out the things people want to hear so they aren't uncomfortable, 'we are just so thankful that he's here and okay.'
and, it's true. I am thankful. but, i'm also angry. and sad. and frustrated. and I want more than anything to know God. to feel Him. to think He might be hearing me when I ask for things. but, not just hearing me. responding to me. wanting to give me good things. no more hard please. I need a big long break from hard.
the past few weeks have been wrought with ugly parenting things with my big. I never see them coming, and I have no idea if we are doing anything right when these things hit. so tonight, I climbed up the ladder to her bed, and laid next to her. I sang to her. she sang to me. she talked about things that seem so small from my adult world. they're significant to her. so I listened.
then, she rolled over, sucked her thumb, and rubbed her lambie between her fingers. I rubbed her back and silently thought. or prayed. or maybe those two things are one in the same. I thought about how angry I am about hospital stays. how I just keep cycling through the same things over and over. and, maybe, she's angry about hospital stays too. but, she's six. and she doesn't know exactly how to say that. so it looks different than it does for me.
I thought about how I can go to God over and over again, with my ugly thoughts, and my frustrations with Him, and how He doesn't ever seem to lose his temper. He just lets me be angry. and I pictured him rubbing my back as I fall asleep at the end of a day where I have spent the whole day stomping my feet and yelling at Him. how He always seems to be there when I look back at things, right in the middle of it all, sustaining me. and I told Him that I was trying. trying to figure out who He was. and that I would continue to seek, pursue, and run after Him, even on the days where i'm not sure how I feel about Him. and I told Him that was really hard for me because I was afraid that He might abandon me. get angry and decide i'm not worth the effort. or that He already had.
I eventually kissed big on the head and told her she was my favorite six year old in the whole world wide. and I thanked her for singing to me. the song she sang, was a kids song, by an artist named Justin Roberts. lots of his stuff is really silly. but, for some reason, she picked a song from one of his c.d.'s that is taken from old testament stories. specifically, this song was taken from job. as if her lips were singing a soothing balm to a broken heart.
'where were you, when I laid the earth's foundation?
where were you, when I set the stars in space?
and they all sang together.
they all sang together up in space.
allelu, allelu, alleleuia.'
(if you want to hear the whole song, this is not him singing it, but it has the words with it)
someday, all things will be made right. maybe, i'll even get to see the bigger plan that played into the last three years being hard. but, for now, this doesn't wrap up neatly. things are hard. and, I don't want to act like it's all okay. I struggle. if you struggle too, that's okay. if you're tired of hearing pat answers, and warding off those who blame you so that they can continue to believe that really hard things are from a lack of faith, come join me in. it's hard here. but, there are lots of really good days. and laughter abounds because I use sarcasm to get through the hard ones.
but, everything backed up again with the birth of my son. I've spent the months asking why, and knowing i'll likely never get an answer. the distance returned. the trust diminished. I can happily spit out the things people want to hear so they aren't uncomfortable, 'we are just so thankful that he's here and okay.'
and, it's true. I am thankful. but, i'm also angry. and sad. and frustrated. and I want more than anything to know God. to feel Him. to think He might be hearing me when I ask for things. but, not just hearing me. responding to me. wanting to give me good things. no more hard please. I need a big long break from hard.
the past few weeks have been wrought with ugly parenting things with my big. I never see them coming, and I have no idea if we are doing anything right when these things hit. so tonight, I climbed up the ladder to her bed, and laid next to her. I sang to her. she sang to me. she talked about things that seem so small from my adult world. they're significant to her. so I listened.
then, she rolled over, sucked her thumb, and rubbed her lambie between her fingers. I rubbed her back and silently thought. or prayed. or maybe those two things are one in the same. I thought about how angry I am about hospital stays. how I just keep cycling through the same things over and over. and, maybe, she's angry about hospital stays too. but, she's six. and she doesn't know exactly how to say that. so it looks different than it does for me.
I thought about how I can go to God over and over again, with my ugly thoughts, and my frustrations with Him, and how He doesn't ever seem to lose his temper. He just lets me be angry. and I pictured him rubbing my back as I fall asleep at the end of a day where I have spent the whole day stomping my feet and yelling at Him. how He always seems to be there when I look back at things, right in the middle of it all, sustaining me. and I told Him that I was trying. trying to figure out who He was. and that I would continue to seek, pursue, and run after Him, even on the days where i'm not sure how I feel about Him. and I told Him that was really hard for me because I was afraid that He might abandon me. get angry and decide i'm not worth the effort. or that He already had.
I eventually kissed big on the head and told her she was my favorite six year old in the whole world wide. and I thanked her for singing to me. the song she sang, was a kids song, by an artist named Justin Roberts. lots of his stuff is really silly. but, for some reason, she picked a song from one of his c.d.'s that is taken from old testament stories. specifically, this song was taken from job. as if her lips were singing a soothing balm to a broken heart.
'where were you, when I laid the earth's foundation?
where were you, when I set the stars in space?
and they all sang together.
they all sang together up in space.
allelu, allelu, alleleuia.'
(if you want to hear the whole song, this is not him singing it, but it has the words with it)
someday, all things will be made right. maybe, i'll even get to see the bigger plan that played into the last three years being hard. but, for now, this doesn't wrap up neatly. things are hard. and, I don't want to act like it's all okay. I struggle. if you struggle too, that's okay. if you're tired of hearing pat answers, and warding off those who blame you so that they can continue to believe that really hard things are from a lack of faith, come join me in. it's hard here. but, there are lots of really good days. and laughter abounds because I use sarcasm to get through the hard ones.
Monday, September 16, 2013
grace.
i go through these periods where i become sort of stuck on one idea or concept. what does that really mean? what does that look like when done right? right now, it's the idea of what grace really is: especially in relation to who God is, and how He offers grace to all of us.
so i've been reading, and just reminding myself over and over all day, for me, for abigail, for jason, for the strangers who say things to me that make me want to lose my mind: grace. grace.
i don't believe that grace means that disobedience gets a free pass. instead, i think that when my big gets in trouble, and has to sit out playing with friends, i can hold her and tell her i'm sad, too, that she doesn't get to play.
and grace doesn't mean that when i lose my temper with abigail i don't need to try to reconcile with her. i need to apologize. and then i need to forgive myself and move on. because dwelling on my mistakes is not grace.
in reading lots of verses on grace the one that stuck out to me is 'when sin increased, grace increased all the more' (Romans 5:20). i've been thinking through this and what it means. and i quickly looked around at the church body i belong to, and felt it.
i love my church. it is full of a very diverse group of people sunday morning. black and white. young and old. recovering addicts, people with histories of felonies, middle class, upper class, and the not so middle or upper class. but, the thing i love the most, is that every person there seems to outwardly live their own mess. i'm not talking about walking around bragging about the things we do that we shouldn't. i'm talking about people who know each others struggles. people who are honest and say, 'i've started drinking again, and got pulled over for a dui. i need some prayer. some love. some help.'
but, the biggest, and greatest thing about our church is that with every ounce of my being, i can feel the grace. i think the 'sin abounding' thing isn't meant to be taken as increasing your sin. i think, as i look around, the places where grace abounds more, are those places that are full of real people. honest about sin. spilling it out abundantly.
and when i am in a place where grace abounds, it is like a fog that rolls in and out, around and through, taking with it the sin part and leaving behind only the grace. the sun shining down burning off the sin making grace glitter and illuminate on each person-like the dew that's left on the grass after a fog.
i just have to take my shoes off and walk around on it. to feel it. i have to bend down and look closely at the way the light reflects off of each drop. and i have to try to take pictures of it, zoomed way in, as to show every detail. to know, for myself, that the beauty i'm experiencing is real. is there anything, so marvelous, so remarkable as grace.
as i've searched, and searched, i've read through story after story that tries hard to explain grace. but, alas, they do it know justice. because the moment i think i might know it, something bigger and more beautiful takes place. and i have to continue to search, and pursue. hoping my journey leaves those around me being touched by the overflow of grace i'm discovering.
for from His fullness we have all received, grace upon grace. John 1:16
so i've been reading, and just reminding myself over and over all day, for me, for abigail, for jason, for the strangers who say things to me that make me want to lose my mind: grace. grace.
i don't believe that grace means that disobedience gets a free pass. instead, i think that when my big gets in trouble, and has to sit out playing with friends, i can hold her and tell her i'm sad, too, that she doesn't get to play.
and grace doesn't mean that when i lose my temper with abigail i don't need to try to reconcile with her. i need to apologize. and then i need to forgive myself and move on. because dwelling on my mistakes is not grace.
in reading lots of verses on grace the one that stuck out to me is 'when sin increased, grace increased all the more' (Romans 5:20). i've been thinking through this and what it means. and i quickly looked around at the church body i belong to, and felt it.
i love my church. it is full of a very diverse group of people sunday morning. black and white. young and old. recovering addicts, people with histories of felonies, middle class, upper class, and the not so middle or upper class. but, the thing i love the most, is that every person there seems to outwardly live their own mess. i'm not talking about walking around bragging about the things we do that we shouldn't. i'm talking about people who know each others struggles. people who are honest and say, 'i've started drinking again, and got pulled over for a dui. i need some prayer. some love. some help.'
but, the biggest, and greatest thing about our church is that with every ounce of my being, i can feel the grace. i think the 'sin abounding' thing isn't meant to be taken as increasing your sin. i think, as i look around, the places where grace abounds more, are those places that are full of real people. honest about sin. spilling it out abundantly.
and when i am in a place where grace abounds, it is like a fog that rolls in and out, around and through, taking with it the sin part and leaving behind only the grace. the sun shining down burning off the sin making grace glitter and illuminate on each person-like the dew that's left on the grass after a fog.
i just have to take my shoes off and walk around on it. to feel it. i have to bend down and look closely at the way the light reflects off of each drop. and i have to try to take pictures of it, zoomed way in, as to show every detail. to know, for myself, that the beauty i'm experiencing is real. is there anything, so marvelous, so remarkable as grace.
as i've searched, and searched, i've read through story after story that tries hard to explain grace. but, alas, they do it know justice. because the moment i think i might know it, something bigger and more beautiful takes place. and i have to continue to search, and pursue. hoping my journey leaves those around me being touched by the overflow of grace i'm discovering.
for from His fullness we have all received, grace upon grace. John 1:16
Wednesday, June 19, 2013
heaven.
some of these things may come across different than how i mean, but i think it's important for people to hear this.
there are lots of things about Down syndrome that have changed over the last thirty plus years. we no longer institutionalize people with Ds. matter of fact, lots of them are being mainstreamed in school, and some even go on to college. there are people with Ds getting married. the beliefs about Ds are slowly shifting, and people are learning that it is not the horrible, life sentence that people once viewed it as.
when we set out to adopt a kiddo with Ds, i was prepared to push hard, and show the world that our child could fit in with everyone else. we would push hard in and out of therapies. we would have the same expectations for obedience that we do with big. we would be a family that showed the world how great Ds is.
i have had to be kicked in the gut a few times to realize these were all my thoughts and dreams. i have had to come to accept that shilo may live with us the rest of her (or our) life. she may have significant delays physically and be on the more extreme end of cognitive delays. please note that nowhere in that paragraph do i say that these things are true of shilo, just that i had to accept that they were possibilities.
we have no idea what the future holds for our little (or our big for that matter). but, i have come to realize something. this story, it's not about me. i can kick and scream, whine and fuss (and i have), that this was not what i envisioned when i tried to be obedient to God's call. matter of fact, i think i believed i deserved a child with Down syndrome and no other complications, to some degree; like adopting a kiddo with Ds meant that i got one of the 'easy' cases.
but shilo isn't one of the 'easy' cases. matter of fact, she is on the more extreme end medically at this point in her life. but, with deepest honesty, i can't imagine a more perfect little for our family. we are all head over heals in love with this little girl. she has revealed to me ugly parts of my heart i didn't know existed. she has shown me that while her 'special needs' may be glaringly obvious to outsiders, mine are there too. i just have the opportunity to hide mine.
for a long time, i envisioned heaven as a place where there would be no more Down syndrome. i have to apologize for that. i hope in heaven there is no more 'normal.' no more sorrow over things like extra chromosomes, and no more woe is me. because the idea of spending eternity with my little, and her not having an extra chromosome, well, that looks more like hell to me.
don't get me wrong. i'd take away the heart surgery, the hypothyroidism, and the other medical junk faster than you can imagine. but the Down syndrome, and even the cognitive delays, i'll leave those intact. certainly in the garden of eden, where everything was perfect, God envisioned a beautiful little girl with almond shaped eyes, and short chubby hands. i can't for one second believe that when He made the perfect place for mankind, that He didn't already have a plan for a person with an extra 21st chromosome. it was the fall that lead to the medical things that can come along with it.
and perhaps, when He created the same garden, He also saw a dark skinned girl with chocolate chips everywhere, and one loan freckle in her right armpit. and it was good. until that fruit was eaten. and then it became the marker for scarier things that could come. but, when all things are made right, i hope that my big still has her chocolate chips. and her freckles. she wouldn't be my big without them.
there are lots of things about Down syndrome that have changed over the last thirty plus years. we no longer institutionalize people with Ds. matter of fact, lots of them are being mainstreamed in school, and some even go on to college. there are people with Ds getting married. the beliefs about Ds are slowly shifting, and people are learning that it is not the horrible, life sentence that people once viewed it as.
when we set out to adopt a kiddo with Ds, i was prepared to push hard, and show the world that our child could fit in with everyone else. we would push hard in and out of therapies. we would have the same expectations for obedience that we do with big. we would be a family that showed the world how great Ds is.
i have had to be kicked in the gut a few times to realize these were all my thoughts and dreams. i have had to come to accept that shilo may live with us the rest of her (or our) life. she may have significant delays physically and be on the more extreme end of cognitive delays. please note that nowhere in that paragraph do i say that these things are true of shilo, just that i had to accept that they were possibilities.
we have no idea what the future holds for our little (or our big for that matter). but, i have come to realize something. this story, it's not about me. i can kick and scream, whine and fuss (and i have), that this was not what i envisioned when i tried to be obedient to God's call. matter of fact, i think i believed i deserved a child with Down syndrome and no other complications, to some degree; like adopting a kiddo with Ds meant that i got one of the 'easy' cases.
but shilo isn't one of the 'easy' cases. matter of fact, she is on the more extreme end medically at this point in her life. but, with deepest honesty, i can't imagine a more perfect little for our family. we are all head over heals in love with this little girl. she has revealed to me ugly parts of my heart i didn't know existed. she has shown me that while her 'special needs' may be glaringly obvious to outsiders, mine are there too. i just have the opportunity to hide mine.
for a long time, i envisioned heaven as a place where there would be no more Down syndrome. i have to apologize for that. i hope in heaven there is no more 'normal.' no more sorrow over things like extra chromosomes, and no more woe is me. because the idea of spending eternity with my little, and her not having an extra chromosome, well, that looks more like hell to me.
don't get me wrong. i'd take away the heart surgery, the hypothyroidism, and the other medical junk faster than you can imagine. but the Down syndrome, and even the cognitive delays, i'll leave those intact. certainly in the garden of eden, where everything was perfect, God envisioned a beautiful little girl with almond shaped eyes, and short chubby hands. i can't for one second believe that when He made the perfect place for mankind, that He didn't already have a plan for a person with an extra 21st chromosome. it was the fall that lead to the medical things that can come along with it.
and perhaps, when He created the same garden, He also saw a dark skinned girl with chocolate chips everywhere, and one loan freckle in her right armpit. and it was good. until that fruit was eaten. and then it became the marker for scarier things that could come. but, when all things are made right, i hope that my big still has her chocolate chips. and her freckles. she wouldn't be my big without them.
when most of us say that we long for things to be made right one day, we envision heaven being filled with people like ourselves. i have begun to pray that heaven will be full of the beautiful differences, that we have decided are mutations. i pray for almond shaped eyes, and low set ears. i pray for brushfield spots and lisch nodules. perhaps when God says He will make all things new, He is talking about the minds of those of us who believe that we are what 'being made new' will look like.
Tuesday, May 7, 2013
a pursuing papa.
shilo has a preference. some may refer to it as a slight obsession. she only wants her mama. i can be literal feet away from her while papa is holding her, and there will likely be tears, and an attempt to leap from his arms towards me.
when she finally is back in my arms she gives me a hug, then sits up and smiles. repeat around ten times. two minutes. two hours. doesn't matter. she missed her mama.
this would make sense if jason was a horrible papa. but, he isn't. he loves snuggling. and she hasn't always felt like this. it was an all of a sudden one day thing, where she decided that she really only wanted mama. when he kisses her goodnight, she turns away. if he tries to put her down for bed, she cries before he ever makes it up the steps. she. just. wants. mama.
as this scene was playing out for the billionth time the other day, i had a moment where i was reminded of another Papa like this. no matter how much shilo cries, turns away, and searches out someone else to fulfill her needs, her papa will continue to hold her while she cries, and meet those needs. she doesn't understand this yet, but with time, she will.
no matter how much i mess up, fall short, and try to pursue something other than my Papa, He will continue to hold me and love me. we have been all over the place in the last year, God and i. i have been super angry. baffled. bitter. unbelieving. disheartened. through it all, He continued to be right there. He held me even though i cried about it. He listened to me even though He wasn't the one i really wanted to talk to. He stayed right there pursuing me.
i'm pretty thankful for the amazing earthly example that i get to see of my husband loving my daughters, the way God loves us.
 |
| attempting to reach mama. |
when she finally is back in my arms she gives me a hug, then sits up and smiles. repeat around ten times. two minutes. two hours. doesn't matter. she missed her mama.
 |
| shilo's elated smile when returned to mama. |
this would make sense if jason was a horrible papa. but, he isn't. he loves snuggling. and she hasn't always felt like this. it was an all of a sudden one day thing, where she decided that she really only wanted mama. when he kisses her goodnight, she turns away. if he tries to put her down for bed, she cries before he ever makes it up the steps. she. just. wants. mama.
as this scene was playing out for the billionth time the other day, i had a moment where i was reminded of another Papa like this. no matter how much shilo cries, turns away, and searches out someone else to fulfill her needs, her papa will continue to hold her while she cries, and meet those needs. she doesn't understand this yet, but with time, she will.
no matter how much i mess up, fall short, and try to pursue something other than my Papa, He will continue to hold me and love me. we have been all over the place in the last year, God and i. i have been super angry. baffled. bitter. unbelieving. disheartened. through it all, He continued to be right there. He held me even though i cried about it. He listened to me even though He wasn't the one i really wanted to talk to. He stayed right there pursuing me.
i'm pretty thankful for the amazing earthly example that i get to see of my husband loving my daughters, the way God loves us.
Saturday, April 20, 2013
here.
i sat in the lobby of the children's hospital with shilo, and clumsily held her and pushed her feed at the same time. it was cold and flu season, and we had just finished an outpatient appointment. i did not want to sit in the crowded cafeteria surrounded by germs. i didn't want to sit on the chairs where others had sat in the lobby. so i found a little ledge, and sat and fed her. i was pretty oblivious to others around me, mostly because so many people stare (even in a children's hospital) when you are feeding a kid with a g-tube.
out of nowhere a woman approached me. she smiled and said she had been talking to her husband and noticed me from upstairs (they have a balcony type overlook).
'my daughter has the same thing. they are going to put a g-tube in too. that's why i noticed you.'
i talked to her for a little bit. her daughter had just had her av canal repair, and was getting ready to get a pacemaker. she would get a g-tube down the road as well. or at least that was the plan.
there has been a lot between there and here.
here is ugly.
here is hard.
here is waking up to a facebook update that says, 'sofi esta con Jesus.' and gasping. and crying. making a meal, and wishing i had the right words to make the pain less.
here is asking again, the same questions i have been asking for a year now. about life. about death. about children. about healing.
here is knowing the truth, and saying the truth, even when i don't feel it.
here is holding on tight to the fact that, 'He will wipe every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.' revelation 21:4
here is longing for that day. not for my own sake. for the sake of a family who have lost part of their hearts. their little. their sofi.
out of nowhere a woman approached me. she smiled and said she had been talking to her husband and noticed me from upstairs (they have a balcony type overlook).
'my daughter has the same thing. they are going to put a g-tube in too. that's why i noticed you.'
i talked to her for a little bit. her daughter had just had her av canal repair, and was getting ready to get a pacemaker. she would get a g-tube down the road as well. or at least that was the plan.
there has been a lot between there and here.
here is ugly.
here is hard.
here is waking up to a facebook update that says, 'sofi esta con Jesus.' and gasping. and crying. making a meal, and wishing i had the right words to make the pain less.
here is asking again, the same questions i have been asking for a year now. about life. about death. about children. about healing.
here is knowing the truth, and saying the truth, even when i don't feel it.
here is holding on tight to the fact that, 'He will wipe every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.' revelation 21:4
here is longing for that day. not for my own sake. for the sake of a family who have lost part of their hearts. their little. their sofi.
Wednesday, April 10, 2013
we experienced a miracle.
a year ago right now, i lived in what felt like to me, some level of hell. day in and day out was spent in the corner of a dark picu room. i would hear, 'heart surgery' and then the next day all hopes of that happening would be shot because someone changed a medicine and shilo went down hill.
i felt, deeply, that God had given us this little girl, and then quickly ran fleeing the opposite direction. it felt like some sort of ugly and cruel trick. why, why, why, would He call us to adopt a child, and then have us end up living like this. there was no good explanation. and so i sat. and i became bitter.when we got home, i would love to say it was better. but i came home to a child who was constantly hooked to a feeding pump, an oxygen tube, and was on so much medicine we had to get up multiple times every night to give it to her. she was also being weaned off of narcotics, and had days where she cried a high pitched horrid cry. all day. the little baby who had smiled for the first time just days before being hospitalized just laid there. she didn't smile. she seemed completely uncaring that we were even there.
home was more work than ever before. i was a hot mess. i yelled at abigail a lot. i felt more alone than i did in that hospital. jason and i just made i through the days, and at the end of the night, we crashed so we could do it again the next day.
and the nights. they were some new level of hell. i didn't sleep well. i would wake up confused, not knowing where i was, how old i was, and then it would all hit me, and i felt this ugly guilt from what had happened over the last months of our lives. i felt like i had ruined us. and satan was quick to confirm that thought.
slowly, slowly, slowly, things improved. she came off of meds a little at a time. she didn't need oxygen all the time. she started smiling again. she didn't have to be hooked to her feed pump so much. we didn't have to get up at night time. i yelled less. i got more sleep. life began to feel better.
i won't pretend that i now have happy thoughts and feelings about that time in our lives. it was hard. i hated it. i still am working through moments of bitter, and confusion about why that needed to be. but the last few months have shown me something i would have adamantly denied before hand. we experienced a miracle. the fact that shilo is here, with us now, smiling, loving, and full of life, is a miracle.
not so long ago i got a phone call from my mom. my uncle had, had a heart attack. he was in the hospital awaiting triple bypass surgery. while his situation was certainly different than shilo's, i couldn't help but notice the similarities as the days went on. he aspirated, ended up with an infection, was intubated, and passed away. shilo had an infection, aspirated while being intubated, worsening the infection, went into heart failure, and she's here.
as i sat at his funeral, i felt, for the first time, like maybe, just maybe, God had heard my prayers all those days in the hospital. He definately didn't give what i asked for at the time-a quick trip, back home, a baby who could still eat-but she's here. and our lives would be less without her.
i recently met another mom of a child with Ds while at an outpatient appointment. her daughter had an av canal-the heart surgery shilo had. after surgery, she has had to be re-intubated multiple times. they couldn't figure out what was going on. finally. finally, they found another hole in her heart, that needed patched. she had that surgery monday, and thus far is doing okay. she still has a road ahead of her.
shilo, when she went in for her av canal, had an extra asd that nobody knew about. it hadn't been visible on her echos. it hadn't even been noticed during her first heart surgery. but the surgeon noticed it when fixing her av canal, and repaired it as well. i didn't know, until recently, that sometimes, those extra holes aren't caught, even during surgery. sometimes, kids continue to struggle, and nobody can figure out why. sometimes, it's not caught in time. and i'm blown away that my little, with her fixed heart, is currently playing with her sister in their room.
it may take me the rest of my life to get all the small bites of what God was doing during those long months in the hospital. but, what i can clearly say now, one year later, is that we experienced a miracle. for that, we are thankful.
Monday, March 25, 2013
killing dreams.
most of us are familiar with the idea of the 'american dream.' you know, the idea that we are all able to attain a life with prosperity, having nice things, raising awesome kids, and retiring to be able to take awesome trips, and spend time with grand kids.
our family bucked most of that idea a long time ago. we don't want a big house, fancy cars, and lots of stuff. we want time together, laughter, and willingly give up lots of things in order for me to stay home with our kiddos, like a second car, a cell phone, new gadgets, new clothes, and so on and so forth. we're pretty content with it though. i'll take playing candy land, teaching my children, and watching shilo sit alone for the first times over trendy jeans and a car payment any day.
before abigail came, when she was but the name that God gave to us, and a lingering desire, there was a theme for her life. there was this one word that God gave us over and over to cling onto for her. hope. her middle name means hope in hebrew. learning to hope when we waited on a baby, grew my faith. learning to hope in the face of a diagnoses that leaves scary words rumbling through your head from day to day, has grown my faith. watching strangers pour out their love, support, and financial support as we got ready to have a tumor removed from our daughter's leg, made us have hope, and it would be impossible to have anything less than faith as we watched 30,000 dollars pour in in less than a month.
since the birth of shilo though, i have had a harder time putting my finger on what exactly it is that i'm supposed to be learning. there has, again, been hope and faith lessons. but that never quite feels like the lesson at hand. there have been a lot of lessons in learning to trust, even when things look different than i had thought or hoped. but i still don't quite think that's where the lesson lies. so i'm going to back up and be honest about some things.
first of all, i have sort of said this a few times on here, but i want to make this clear; when we chose to adopt a child with down syndrome, it looked much different in my head than what it does in reality. a really cute kid with some cognitive and developmental delays was totally doable. i had pictures of being able to tell people that lots of people with down syndrome grow up to become independent, some go to college, some get married, and some even own their own businesses. sometimes i wonder if we knew then all that would come ahead if we would have made a different choice. maybe. i don't know really. i can't imagine a different choice, because it would mean shilo wouldn't be here with us. and i can't, knowing my daughter, say i wouldn't have wanted her. because i want her. and in reality, there are lots of parents, dealing with typical things who may not have had children, had they known what life was going to be like. there is grace in the not knowing.
my struggle from the very beginning was in the fact that i didn't want to fall in love with her. she had heart defects. and ohs can have not great outcomes. what if i fell in love and things went horrible. but fall in love i did. and about the time where i felt like things were going to be okay, they suddenly weren't. and most of you already know the story. hospital stay. nearly died. ohs. home. life changing. and everyday since then has gotten a little better. a lot easier. and my love has grown exponentially for my little. i think the being scared to fall in love thing is pretty common, judging by the song written by matt hammitt after he found out his son had a congenital heart defect.
we were in the hospital a year ago right now. she lived. she's here. she great. and she has way more going on than we ever would have guessed. i don't love writing out all my children's labels in one place, but for the sake of this post, i will. down syndrome, coarctation of the aorta (repaired), av canal (repaired), a second asd (repaired), cor triatriatum (repaired), pulmonary hypertension, hypothyroidism, congenital mixed hearing loss (deaf in the right ear, severely hard of hearing in left), epilepsy, significant developmental delays, and a g-tube due to dysphagia.
now, i still think my daughter is very intelligent. just this morning she signed a two word sentence for the first time ever. 'kiss baby.' that's pretty amazing at sixteen months, espeically when you spent quite a few months in the hospital. none the less, at some point the pride i had that my child could grow up and do all of the things i wrote above smacked me in the face. what if she is also severely cognitively delayed? what if she can't ever live independently? what if she lives with us the rest of our lives?
and this, this, is where my lesson became obvious. because as i wrestled through these questions, i learned something. thirteen years ago i gave my life to Christ. i said i wanted Him in control. and i do. and most of the time that doesn't bother me, or scare me, or any of that. but i didn't realize until our little came along that i still held on to the idea that our children would grow up, move out, and we would get to have all sorts of fun in retirement.
so at thirty, i've been working through the idea that it's possible, that i may be parenting the rest of my life. it isn't just shilo. our big could have any number of things come up and take away some of her ability to function. when we adopt again, we could end up with a child who has more needs than the two we already have. we may be in this thing for a lifetime. and suddenly, i was reminded that my life is not my own.
i believe that God called us to adopt. i believe He chose the two girls we have in our home, to be our daughters. i have found peace and comfort in the idea that my life is not mine to plan. i do not need to look forward to retirement and all the great stuff that will come. i need to look at today, and all the great stuff that is. the future will be what it will be. and no amount of trying to think it out, plan it out, and perfect it, will cause it to actually be, perfect.
so i accept where we are. because i'm more than willing to kill any dreams i have left in order to be who God has called me to be; a mama to two amazing beings. the american dream is a deception, a lie, and a thief of today's joy.
i choose, instead, to live the dream that God has for me.
our family bucked most of that idea a long time ago. we don't want a big house, fancy cars, and lots of stuff. we want time together, laughter, and willingly give up lots of things in order for me to stay home with our kiddos, like a second car, a cell phone, new gadgets, new clothes, and so on and so forth. we're pretty content with it though. i'll take playing candy land, teaching my children, and watching shilo sit alone for the first times over trendy jeans and a car payment any day.
before abigail came, when she was but the name that God gave to us, and a lingering desire, there was a theme for her life. there was this one word that God gave us over and over to cling onto for her. hope. her middle name means hope in hebrew. learning to hope when we waited on a baby, grew my faith. learning to hope in the face of a diagnoses that leaves scary words rumbling through your head from day to day, has grown my faith. watching strangers pour out their love, support, and financial support as we got ready to have a tumor removed from our daughter's leg, made us have hope, and it would be impossible to have anything less than faith as we watched 30,000 dollars pour in in less than a month.
since the birth of shilo though, i have had a harder time putting my finger on what exactly it is that i'm supposed to be learning. there has, again, been hope and faith lessons. but that never quite feels like the lesson at hand. there have been a lot of lessons in learning to trust, even when things look different than i had thought or hoped. but i still don't quite think that's where the lesson lies. so i'm going to back up and be honest about some things.
first of all, i have sort of said this a few times on here, but i want to make this clear; when we chose to adopt a child with down syndrome, it looked much different in my head than what it does in reality. a really cute kid with some cognitive and developmental delays was totally doable. i had pictures of being able to tell people that lots of people with down syndrome grow up to become independent, some go to college, some get married, and some even own their own businesses. sometimes i wonder if we knew then all that would come ahead if we would have made a different choice. maybe. i don't know really. i can't imagine a different choice, because it would mean shilo wouldn't be here with us. and i can't, knowing my daughter, say i wouldn't have wanted her. because i want her. and in reality, there are lots of parents, dealing with typical things who may not have had children, had they known what life was going to be like. there is grace in the not knowing.
my struggle from the very beginning was in the fact that i didn't want to fall in love with her. she had heart defects. and ohs can have not great outcomes. what if i fell in love and things went horrible. but fall in love i did. and about the time where i felt like things were going to be okay, they suddenly weren't. and most of you already know the story. hospital stay. nearly died. ohs. home. life changing. and everyday since then has gotten a little better. a lot easier. and my love has grown exponentially for my little. i think the being scared to fall in love thing is pretty common, judging by the song written by matt hammitt after he found out his son had a congenital heart defect.
we were in the hospital a year ago right now. she lived. she's here. she great. and she has way more going on than we ever would have guessed. i don't love writing out all my children's labels in one place, but for the sake of this post, i will. down syndrome, coarctation of the aorta (repaired), av canal (repaired), a second asd (repaired), cor triatriatum (repaired), pulmonary hypertension, hypothyroidism, congenital mixed hearing loss (deaf in the right ear, severely hard of hearing in left), epilepsy, significant developmental delays, and a g-tube due to dysphagia.
now, i still think my daughter is very intelligent. just this morning she signed a two word sentence for the first time ever. 'kiss baby.' that's pretty amazing at sixteen months, espeically when you spent quite a few months in the hospital. none the less, at some point the pride i had that my child could grow up and do all of the things i wrote above smacked me in the face. what if she is also severely cognitively delayed? what if she can't ever live independently? what if she lives with us the rest of our lives?
and this, this, is where my lesson became obvious. because as i wrestled through these questions, i learned something. thirteen years ago i gave my life to Christ. i said i wanted Him in control. and i do. and most of the time that doesn't bother me, or scare me, or any of that. but i didn't realize until our little came along that i still held on to the idea that our children would grow up, move out, and we would get to have all sorts of fun in retirement.
so at thirty, i've been working through the idea that it's possible, that i may be parenting the rest of my life. it isn't just shilo. our big could have any number of things come up and take away some of her ability to function. when we adopt again, we could end up with a child who has more needs than the two we already have. we may be in this thing for a lifetime. and suddenly, i was reminded that my life is not my own.
i believe that God called us to adopt. i believe He chose the two girls we have in our home, to be our daughters. i have found peace and comfort in the idea that my life is not mine to plan. i do not need to look forward to retirement and all the great stuff that will come. i need to look at today, and all the great stuff that is. the future will be what it will be. and no amount of trying to think it out, plan it out, and perfect it, will cause it to actually be, perfect.
so i accept where we are. because i'm more than willing to kill any dreams i have left in order to be who God has called me to be; a mama to two amazing beings. the american dream is a deception, a lie, and a thief of today's joy.
i choose, instead, to live the dream that God has for me.
Saturday, March 9, 2013
small miracles.
there are moments, small brief wrinkles in this thing we call time, where one realizes they are witnessing something miraculous. the moment a child is born. looking back on something that very easily could've ended tragically, but didn't.
some pray for large miracles. healing. reconciliation with someone, that seems impossible. conception to happen after a long stretch of infertility. we sit at the foot of God and ask for the things we want. often, we ask over and over in hopes that if we just repeat ourselves enough, we will be heard. it's very similar to how my four year old interacts with me some days.
i don't often ask for huge miracles. i have before. and like many others, i can look back at events, things that line up, even walking out of the hospital last may with an alive little, and know that i experienced a miracle. but, for the most part, my request are small and infrequent.
except one. every day. sometimes more than once in a day. i ask. i ask in the morning. i sneak in after my girls are sleeping and ask at night. i will keep asking, over and over until i get a yes. because i want this for my little.
Jesus, please heal my little's inability to eat by mouth. i just want this one thing for her. i can handle deaf. i can handle seizures. but, i really want her to be able to eat.'
for most people, the process of eating starts with learning to breathe, suck, swallow. shilo did that. and then she couldn't anymore. and if you forget how to do that, your body has a harder time with those next steps because they build on the first.
and a few nights ago, as i was rocking a little, she was sucking her tongue. we have noticed this occasionally, and know that she did it a long time ago, before our tragic months where she lost the ability. and when i hear it, my heart quickens, and i hold my breath. 'could this be something? could she be relearning to suck?' and then the next time i try to feed her nothing has changed. i am unsure what any of it means, but because i've gotten good at being long suffering, i choose to hope.
and for the last four nights, i have tried something as she is drifting off to sleep. something, that if she does it, would bring about hope in a bigger way. something, that for so many parents might feel like an annoying habit to break, but to us, it is nothing short of a miracle, albeit small.
there is some chewing. some playing, but as her eyes get heavier and heavier, i hear a sound. a sort of smacking that can only be made by doing one thing. sucking. on a paci.
some pray for large miracles. healing. reconciliation with someone, that seems impossible. conception to happen after a long stretch of infertility. we sit at the foot of God and ask for the things we want. often, we ask over and over in hopes that if we just repeat ourselves enough, we will be heard. it's very similar to how my four year old interacts with me some days.
i don't often ask for huge miracles. i have before. and like many others, i can look back at events, things that line up, even walking out of the hospital last may with an alive little, and know that i experienced a miracle. but, for the most part, my request are small and infrequent.
except one. every day. sometimes more than once in a day. i ask. i ask in the morning. i sneak in after my girls are sleeping and ask at night. i will keep asking, over and over until i get a yes. because i want this for my little.
Jesus, please heal my little's inability to eat by mouth. i just want this one thing for her. i can handle deaf. i can handle seizures. but, i really want her to be able to eat.'
for most people, the process of eating starts with learning to breathe, suck, swallow. shilo did that. and then she couldn't anymore. and if you forget how to do that, your body has a harder time with those next steps because they build on the first.
and a few nights ago, as i was rocking a little, she was sucking her tongue. we have noticed this occasionally, and know that she did it a long time ago, before our tragic months where she lost the ability. and when i hear it, my heart quickens, and i hold my breath. 'could this be something? could she be relearning to suck?' and then the next time i try to feed her nothing has changed. i am unsure what any of it means, but because i've gotten good at being long suffering, i choose to hope.
and for the last four nights, i have tried something as she is drifting off to sleep. something, that if she does it, would bring about hope in a bigger way. something, that for so many parents might feel like an annoying habit to break, but to us, it is nothing short of a miracle, albeit small.
there is some chewing. some playing, but as her eyes get heavier and heavier, i hear a sound. a sort of smacking that can only be made by doing one thing. sucking. on a paci.
small miracle indeed.
Monday, February 25, 2013
choosing to remember.
a year ago, i was awake. all night. holding and swaying, singing and praying. exhausted and frightened i held a little. all night. last night i turned on the same playlist that i listened to then. beautiful peaceful music played. holding and swaying. singing and praying. exhausted and thankful i held a little. she molded into the crook of my elbow because that's where she belongs. her little eyes fluttered. her body relaxed, her breathing became rhythmic.
 |
a year ago today, multiple doctors and nurses rushed in a hospital room. they resuscitated a tiny little girl, breathing for her with an ambu, and pumping her chest with their hands to keep her heart going, and blood flowing through her little body. they put a tube down her throat to breathe for her. and it stayed there for a long time. her mama sat and tried to think of words to tell a three year old about her sister dying. there were tears. there were doctors who seemed so heartless. there was the constant rushing in of nurses and respiratory therapist to use the ambu again. there was non-stop beeping. there were lines and cords, plugs and wires.
and somewhere, although it didn't feel like it at the time, there was some small whisper of hope. of future, life, and laughter. of smiles some day, and milestones to meet. of a sister who loves fiercely, a papa who swoons, and a mama who can't get enough.
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| the ambu was always close by, and got used quite often. |
it is amazing the difference a year can make in the life of a little. we are thankful beyond words that we have a sweet little who is still here with us. smiling. loving her sister. and smitten with her mama and papa.
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| more sitting practice. |
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| wearing the pirate hat her sister made her (i have no idea why it's a pirate hat). |
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| playing with her sister. |
'every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.' james 1:17
shilo. gift from God. one year later.
Friday, February 15, 2013
february.
i stand in the kitchen watching the large snowflakes fall from the sky, and i think of the line from a nichole nordeman song, 'wrapped in blankets white, all creation, shivers underneath.' i can hear my big giggling in the other room, and my little loudly proclaiming, 'dadadadada!' and, even those happy noises make me feel guilty. i don't even try to stop the tears. they are around for a little while.
when i woke up i could feel the lies creeping in immediately. the grew bigger and bigger, threatening to swallow me. and i know over the next couple of weeks that i'm going to be fighting hard with myself to let go of all that i want to hold onto tightly, believing that if i just hold on tight enough, it really will change the past. i can somehow go back and undo that one decision that left us living separately for months, and nearly took my little's life.i text jason and ask him to pray for me. and, as always he reminds me of all that is good about me. but, the good doesn't erase that one moment in time.
Wednesday, January 16, 2013
things that are needed.
i have waited quite some time to share this first story. i could not, for so many reasons, put these words out there for the world to read. i have fear that someone will read them and use them as fuel in a fire i'm not interested in being part of. please do not use my words for that. and do not respond with hatred or malice for the one who originally said them. the way we change others is love. but they need to be shared so you can understand something bigger. so read the story, but please don't comment on that one small part of what i'm trying to share here.
jason, shilo, and i sat in an emergency room. shilo was sick. there were lots of things going on around us. a doctor walked in. the attending doctor, not the residents or fellows who had been caring for her. she asked a few questions about health and history. i answered. and then this, 'did you know, before she was born, that she was going to have down syndrome?' i could feel my heart beating faster and louder at the question. i knew that lots of people had been asked this question. and i knew that if followed with a yes, there was often an inquiry of why one didn't abort. i spoke confidently. 'she is adopted. we intentionally set out to adopt a child with down syndrome.' deep breaths. deep breaths. 'oh! how noble of you to adopt a child that is such a, such a....i'm trying to think of the right word. such a burden.' i didn't respond. i couldn't respond. she walked out a few seconds later. jason tried to convince me that she was attempting a compliment. i tried hard not to find her and tell her that i didn't want her to take care of my daughter if she saw her as a burden.
you need my daughter with down syndrome. you need people with special needs, disabilities, cognitive delays, and physical limitations. they are not a burden.
i could tell you about how people with special needs often end up with siblings in a service field. i could share this story with you to show how they develop compassion in others. i could tell you how our daughter with down syndrome, in ways we never could have predicted, has knit our family together closer with each breath she takes. but this is not why we need these people.
we need people who are different than us, who have limitations, and who are often seen as a burden to society, to realize what it means to be human. first corinthians 1:27b says, 'God chose the weak things of the world to shame the strong.'
when we take out those who's abilities don't hit the standards everyone else does, we become the people of babel. let's build a tower so that nothing bad can ever happen again. we can keep out the things of the world we don't want to happen. no tragedies here. no drunk man crying on my sidewalk because he witnessed his dad get hit by a car. no little girl lying in her bed right now who could have a tumor looming and we don't even know it. we have conquered the world and have rid it of all things deemed 'uncomfortable' to look at, hear about, or think about. yes, our world is perfect and we can move on to greater things. we, as a people, are perfect.
but, ridding our world of the weak things will prove only to do what those who are weak already do: it will shine a great light on our own weaknesses. it will remind us that walking, talking, breathing, and living may not always be easy, and it may not always be possible. it will take away the miracles that are found in everything.
it is a miracle when two people come together at just the right time, and somehow,that 25% chance of becoming pregnant, takes place. nine months later, a child is born. 46 chromosomes all intact and accounted for. no more, no less. all genetic material is present, all organs work correctly. they roll over, sit up, crawl, and then walk. they learn new things every day, and grow up and start the cycle over again. truly miraculous.
it's also a miracle that jason and i can come together at just the right time, and our bodies cannot procreate like they were designed to. it is a miracle that my oldest daughter has more than one disorder in her body, and still is able to live each day doing things typical four year olds do. it is a miracle that my little had five heart defects, and each one played off of another in a way that if that other hadn't been present she would have died within minutes of birth.
i know our world works hard on finding cures, fixing things, and medicating away uncomfortable. some of that is right. some of it is needed. but we also need those uncomfortable things. we need to be reminded that some things are unfixable, and some incurable. somethings that might seem like a burden, will bring about great insight into a world that is only common and ordinary without them. and sometimes, those things we see as burdens are born with the most beautiful, almond shaped eyes, and the kinkiest curliest hair, that one has ever seen. and sometimes you fall hard and fast in love with them, even if it means your life might have days of hard and ugly. and sometimes, when you look back at things that seemed hard and ugly at the time, you might even be thankful for things, like the miracle of not getting pregnant.
jason, shilo, and i sat in an emergency room. shilo was sick. there were lots of things going on around us. a doctor walked in. the attending doctor, not the residents or fellows who had been caring for her. she asked a few questions about health and history. i answered. and then this, 'did you know, before she was born, that she was going to have down syndrome?' i could feel my heart beating faster and louder at the question. i knew that lots of people had been asked this question. and i knew that if followed with a yes, there was often an inquiry of why one didn't abort. i spoke confidently. 'she is adopted. we intentionally set out to adopt a child with down syndrome.' deep breaths. deep breaths. 'oh! how noble of you to adopt a child that is such a, such a....i'm trying to think of the right word. such a burden.' i didn't respond. i couldn't respond. she walked out a few seconds later. jason tried to convince me that she was attempting a compliment. i tried hard not to find her and tell her that i didn't want her to take care of my daughter if she saw her as a burden.
you need my daughter with down syndrome. you need people with special needs, disabilities, cognitive delays, and physical limitations. they are not a burden.
i could tell you about how people with special needs often end up with siblings in a service field. i could share this story with you to show how they develop compassion in others. i could tell you how our daughter with down syndrome, in ways we never could have predicted, has knit our family together closer with each breath she takes. but this is not why we need these people.
we need people who are different than us, who have limitations, and who are often seen as a burden to society, to realize what it means to be human. first corinthians 1:27b says, 'God chose the weak things of the world to shame the strong.'
when we take out those who's abilities don't hit the standards everyone else does, we become the people of babel. let's build a tower so that nothing bad can ever happen again. we can keep out the things of the world we don't want to happen. no tragedies here. no drunk man crying on my sidewalk because he witnessed his dad get hit by a car. no little girl lying in her bed right now who could have a tumor looming and we don't even know it. we have conquered the world and have rid it of all things deemed 'uncomfortable' to look at, hear about, or think about. yes, our world is perfect and we can move on to greater things. we, as a people, are perfect.
but, ridding our world of the weak things will prove only to do what those who are weak already do: it will shine a great light on our own weaknesses. it will remind us that walking, talking, breathing, and living may not always be easy, and it may not always be possible. it will take away the miracles that are found in everything.
it is a miracle when two people come together at just the right time, and somehow,that 25% chance of becoming pregnant, takes place. nine months later, a child is born. 46 chromosomes all intact and accounted for. no more, no less. all genetic material is present, all organs work correctly. they roll over, sit up, crawl, and then walk. they learn new things every day, and grow up and start the cycle over again. truly miraculous.
it's also a miracle that jason and i can come together at just the right time, and our bodies cannot procreate like they were designed to. it is a miracle that my oldest daughter has more than one disorder in her body, and still is able to live each day doing things typical four year olds do. it is a miracle that my little had five heart defects, and each one played off of another in a way that if that other hadn't been present she would have died within minutes of birth.
i know our world works hard on finding cures, fixing things, and medicating away uncomfortable. some of that is right. some of it is needed. but we also need those uncomfortable things. we need to be reminded that some things are unfixable, and some incurable. somethings that might seem like a burden, will bring about great insight into a world that is only common and ordinary without them. and sometimes, those things we see as burdens are born with the most beautiful, almond shaped eyes, and the kinkiest curliest hair, that one has ever seen. and sometimes you fall hard and fast in love with them, even if it means your life might have days of hard and ugly. and sometimes, when you look back at things that seemed hard and ugly at the time, you might even be thankful for things, like the miracle of not getting pregnant.
Thursday, May 24, 2012
pain.
not long before shilo was admitted i came across a place to enter an essay to be considered for addition to a book. the essay was to be about one word that comes to mind with adoption. i was unable to write because we were admitted to the hospital, but i have thought about my one word over and over again. i go back and forth on wanting to put it out there for fear that people won't understand what i mean, but certainly there are other families that feel the same way. so here it is.
eleven times in the past three years i have handed my daughters off to someone else who was much more capable of caring for them at that moment than i was. i have no idea how to administer anaesthesia. i don't know how to run an mri machine. i am most definitely incapable of performing any sort of surgery. every time i hand them off i cry. and every time the people who take them assure me they will take good care of them. i have no doubt of that. it's just that trusting someone else with your child's life is painful. and adoption is born of this same essence.
adoption is something that if i had one word to sum it up, it would be 'pain.' (most) people adopt after experiencing the pain of not being able to conceive children. even though we are very much at peace with having every one of our children come through adoption, there is still something painful about not being able to create life like so many other people around us.
for a birth parent, the knowledge that raising their child, would be best done by someone else, causes great amounts of pain. it's beautiful. it's selfless. it's painful. society can judge, they can question. but they can not erase the image i have of both of my daughter's mothers, with tears running down their cheeks as they walked away from their little girls. and one of my little girls has a birth dad who's heart was also ripped out with making this choice.
and for my big girl (and likely some day my little as well), there are questions, thoughts, conversations, that rip my heart apart as i watch the pain seeping out of her. lots of adoptees come to terms with the fact that being placed for adoption was done in love. but it doesn't take away the pain that for some reason their first family was unable to raise them.
but the thing with pain, is that our God, He loves to redeem. He often will pick up the ashes and make something more beautiful than you could ever imagine. He does not waste the suffering and pain that come with adoption.
as a result of the pain of not being able to conceive, we have two of the most amazing little girls. i could not have envisioned the beauty that would radiate from my daughters. they bring about a kind of joy that starts in your toes, and moves up quickly, making every part of you feel like it will burst.
as a result of placing their children with us, our daughter's birth families have been able to make great choices, and change their lives so that they are able to still be an important part abigail and shilo's lives. going back to college, getting new jobs, becoming more stable. even making choices to live for, and follow Christ.
and as a result of adoption both of my daughter's (despite our parenting deficiencies) will understand the way Christ adopted us much better than i ever will. they will be able to directly relate how adoption means belonging, just the way you are, to a family that loves you.
yes, adoption is pain. and it is out of that pain and brokenness that we often can find beauty.
eleven times in the past three years i have handed my daughters off to someone else who was much more capable of caring for them at that moment than i was. i have no idea how to administer anaesthesia. i don't know how to run an mri machine. i am most definitely incapable of performing any sort of surgery. every time i hand them off i cry. and every time the people who take them assure me they will take good care of them. i have no doubt of that. it's just that trusting someone else with your child's life is painful. and adoption is born of this same essence.
adoption is something that if i had one word to sum it up, it would be 'pain.' (most) people adopt after experiencing the pain of not being able to conceive children. even though we are very much at peace with having every one of our children come through adoption, there is still something painful about not being able to create life like so many other people around us.
for a birth parent, the knowledge that raising their child, would be best done by someone else, causes great amounts of pain. it's beautiful. it's selfless. it's painful. society can judge, they can question. but they can not erase the image i have of both of my daughter's mothers, with tears running down their cheeks as they walked away from their little girls. and one of my little girls has a birth dad who's heart was also ripped out with making this choice.
and for my big girl (and likely some day my little as well), there are questions, thoughts, conversations, that rip my heart apart as i watch the pain seeping out of her. lots of adoptees come to terms with the fact that being placed for adoption was done in love. but it doesn't take away the pain that for some reason their first family was unable to raise them.
but the thing with pain, is that our God, He loves to redeem. He often will pick up the ashes and make something more beautiful than you could ever imagine. He does not waste the suffering and pain that come with adoption.
as a result of the pain of not being able to conceive, we have two of the most amazing little girls. i could not have envisioned the beauty that would radiate from my daughters. they bring about a kind of joy that starts in your toes, and moves up quickly, making every part of you feel like it will burst.
as a result of placing their children with us, our daughter's birth families have been able to make great choices, and change their lives so that they are able to still be an important part abigail and shilo's lives. going back to college, getting new jobs, becoming more stable. even making choices to live for, and follow Christ.
and as a result of adoption both of my daughter's (despite our parenting deficiencies) will understand the way Christ adopted us much better than i ever will. they will be able to directly relate how adoption means belonging, just the way you are, to a family that loves you.
yes, adoption is pain. and it is out of that pain and brokenness that we often can find beauty.
Saturday, November 19, 2011
the emotions of the last few days.
Shilo is currently sleeping, Jason is back home to get some work done and hang out with our daughter, and I am choosing not to hold sweet one right now because she tends to desat when she gets upset...so I'll wait until they do vitals again and then comfort her instead of being the one who causes it.
Anyway, I thought I would share a little more of the personal and emotions side of things here.
First of all, I wasn't sure what to expect when we got here. There are so many stigmas that go with children with Down syndrome that I was ready to defend our choice to knowingly adopt Shilo. But that hasn't been the case at all. While I have had lots of saintly comments, 'wow two children with special needs, y'all are just amazing' I think it's good to clear up right away that we aren't amazing or saintly. We wanted to be parents. And without Abigail and Shilo we wouldn't be. As far as special needs go: raise your hand if you have a biological child with special needs. Now raise your hand if you got some sort of choice about it during pregnancy. Right. Nobody else gets to choose. So why should I be able to say, 'yes, I'll take a Caucasian baby, brown hair, green eyes, and perfectly healthy please?'
I also believe that If I'm going to be willing to step up with my beliefs about being pro-life then I should also step up to the plate of helping those Mama's who choose life. For some that might mean coming alongside single parents. For some it might mean stepping up and taking in those kiddos who's parents loved them enough to choose life and make certain that they had a great one by placing them for adoption. I can't write passionate post about not aborting children with Down syndrome and then hope everything just works out in the end for whomever ends up in that situation.
'If one of you says to him, "Go, I wish you well; keep warm and well fed," but does nothing about his physical needs, what good is it?' These verses are from James 2:16. We are called to have the works that back up our faith. If I say, go have your baby with Down syndrome, and enjoy your life, but am not there to help out in some way I am a liar. Well wishes do nothing to help in the midst of the situation.
All that was to bring us to the first doctor conversation I had in the NICU at University of Kentucky hospital. It will forever be etched in my heart as a moment that God ordained with great joy.
Jason and I arrived here on Tuesday at around 1 in the afternoon. We sat next to Shilo (who still didn't have a name at that point) and stared and rubbed and kissed and sang. After about an hour a doctor pulled us aside so he could give us all of the going-ons with our little girl. He went through what all she had going on medically and then with the biggest smile said, ' She has Down syndrome. We know that. But she will be great. She is great. Where I am from [India] we don't have this sort of care for these children. She will do just fine.' It went on, but the conversation about her actual diagnoses was all positives of why her life will be great and how many opportunities she will still have in life if we don't limit her. I still tear up thinking about it.
Every interaction we have had with nurses here has included a story about a friend, a niece, a cousin, somebody they know that has Down syndrome who is just this awesome joyful person whom they have strong affectionate feeling towards. Not one person has questioned the logic of what we are doing. Not one person has mentioned that she should have been disposed of while in the womb.
We are so grateful for our Shilo and the joy she will bring to our family. We believe ALL children are a blessing from the Lord.
Enjoying our children with different chromosomes than most,
P.S. While I'm not going to make any sort of public push for assistance, we have had lots of people wanting to know how they could help. So I added our paypal info at the side as well as the charity that we would love for people to donate to. :)
Anyway, I thought I would share a little more of the personal and emotions side of things here.
First of all, I wasn't sure what to expect when we got here. There are so many stigmas that go with children with Down syndrome that I was ready to defend our choice to knowingly adopt Shilo. But that hasn't been the case at all. While I have had lots of saintly comments, 'wow two children with special needs, y'all are just amazing' I think it's good to clear up right away that we aren't amazing or saintly. We wanted to be parents. And without Abigail and Shilo we wouldn't be. As far as special needs go: raise your hand if you have a biological child with special needs. Now raise your hand if you got some sort of choice about it during pregnancy. Right. Nobody else gets to choose. So why should I be able to say, 'yes, I'll take a Caucasian baby, brown hair, green eyes, and perfectly healthy please?'
I also believe that If I'm going to be willing to step up with my beliefs about being pro-life then I should also step up to the plate of helping those Mama's who choose life. For some that might mean coming alongside single parents. For some it might mean stepping up and taking in those kiddos who's parents loved them enough to choose life and make certain that they had a great one by placing them for adoption. I can't write passionate post about not aborting children with Down syndrome and then hope everything just works out in the end for whomever ends up in that situation.
'If one of you says to him, "Go, I wish you well; keep warm and well fed," but does nothing about his physical needs, what good is it?' These verses are from James 2:16. We are called to have the works that back up our faith. If I say, go have your baby with Down syndrome, and enjoy your life, but am not there to help out in some way I am a liar. Well wishes do nothing to help in the midst of the situation.
All that was to bring us to the first doctor conversation I had in the NICU at University of Kentucky hospital. It will forever be etched in my heart as a moment that God ordained with great joy.
Jason and I arrived here on Tuesday at around 1 in the afternoon. We sat next to Shilo (who still didn't have a name at that point) and stared and rubbed and kissed and sang. After about an hour a doctor pulled us aside so he could give us all of the going-ons with our little girl. He went through what all she had going on medically and then with the biggest smile said, ' She has Down syndrome. We know that. But she will be great. She is great. Where I am from [India] we don't have this sort of care for these children. She will do just fine.' It went on, but the conversation about her actual diagnoses was all positives of why her life will be great and how many opportunities she will still have in life if we don't limit her. I still tear up thinking about it.
Every interaction we have had with nurses here has included a story about a friend, a niece, a cousin, somebody they know that has Down syndrome who is just this awesome joyful person whom they have strong affectionate feeling towards. Not one person has questioned the logic of what we are doing. Not one person has mentioned that she should have been disposed of while in the womb.
We are so grateful for our Shilo and the joy she will bring to our family. We believe ALL children are a blessing from the Lord.
Enjoying our children with different chromosomes than most,
P.S. While I'm not going to make any sort of public push for assistance, we have had lots of people wanting to know how they could help. So I added our paypal info at the side as well as the charity that we would love for people to donate to. :)
Saturday, October 15, 2011
Heartsick.
Before you read any further in this post please go read this blog entry. It's beautiful isn't it. I read it tonight, and it seemed like a good jumping point for some thoughts I wanted to share.
What seems like forever ago, we were waiting on a baby. God had told us that He was bringing us a little girl and her name should be Abigail. During that time period, I watched a neighbor girl have her fourth, fifth, and sixth kid (she has eight now). I also watched her not doing much parenting, and leaving it all to her oldest, who was around nine at the time her sixth was born. I became slightly indignant and made certain to let God know how unfair it was that someone who didn't want kids kept having them, and someone who did couldn't.
On a warm day my husband, our dog Maggie, and I were our for a walk. Some friends were outside. They told us that they were pregnant, with their second. During this time in my life the announcement of someone being pregnant always left a little sting. However, this particular pregnancy was unexpected, and they seemed a little more exasperated than excited (they did eventually become excited, and they definitely love this child). I was both heartbroken, and pissed.
I came home that day and went to my bedroom. I sobbed as I told God just how unfair He was being. I let Him know just exactly how I felt about people who didn't want to be pregnant having multiple children and on and on. I carried on with my little fit for a while before I just layed there and cried. God allowed me to cry and whine for a while (much longer than I allow it from my daughter).
And then,tenderly and firmly, God let me know a couple of things. He first let me know that He could make it so that I could get pregnant. That wasn't too hard for Him, and was something He would be more than willing to do. He also clearly let me know that IF I got pregnant, it would not be the child He had promised us, and it wouldn't hold the same promises as our Abigail.
I won't say that the wait wasn't painful from there. This was revealed to me at the very beginning of our process so we still waited over two years from that point before we heard about Abigail. However, there was something about knowing that God really did have a plan that instantly took the bitterness away.
Like the blog I posted above talks about, it's really easy for me to look in the rear-view mirror and see how smooth that all was. A long wait ended in a beautiful relationship with Abigail's tummy mommy, and one truly amazing little girl. Our lives have been so full and rich, not only just being parents, but learning so much from God, as the result of getting to be Abigail's parents. The trip felt scary, and I white knuckled it for sure, but here we are.
And like anycrazy person along for this ride, we have decided to travel that same scary road again. Most people would think that the second time around wouldn't seem quite so bad. You know where most of the bumps are, and you know what the end result is. I, at least, have been trying to tell myself that.
In reality though, I am just trying to keep from feeling the pain again. Silly, I know. So last night as we watched a show together, and a couple finds out they are chosen to adopt a baby, I felt it. That ache that sat in my chest while we waited for Abigail. That feeling of longing for my child, and knowing that all I can do is buckle up, and hold on. I have been fighting it for a while, but couldn't control it any longer last night.
The truth is, despite that I have been on a very similar road, and despite that I can scoop up the most beautiful results in my arms, and kiss her repeatedly until she says, 'no sank you mama,' I am scared. I spent three years walking around with that pain. It just sat there, day in and day out. Sometimes it got worse, but it never went away. And honestly, I don't want to feel it again. I especially don't want to feel it again for three years.
It's that feeling of being heartsick, the feeling of hope being deferred; the reason that Abigail's middle name is Tohelet. 'Hope (Tohelet) deferred makes the heartsick, but a longing fulfilled is a tree of life.' Proverbs 13:12
I don't want to live heartsick. Yes, it's different this time, because I already have my first Tohelet upstairs sleeping right now. That doesn't make it easier. So we have buckled ourselves in, my knuckles are white, and I have tears streaming down my face. But somewhere in me, just like before, I know that one day, I will get to look back, and realize that this road wasn't so scary. And the company, the smiles, and the conversations I will get to have with the driver, will make the memory of this road even sweeter. There will be much laughter and celebration when we arrive at our next destination as well.
Longing for our next child,
What seems like forever ago, we were waiting on a baby. God had told us that He was bringing us a little girl and her name should be Abigail. During that time period, I watched a neighbor girl have her fourth, fifth, and sixth kid (she has eight now). I also watched her not doing much parenting, and leaving it all to her oldest, who was around nine at the time her sixth was born. I became slightly indignant and made certain to let God know how unfair it was that someone who didn't want kids kept having them, and someone who did couldn't.
On a warm day my husband, our dog Maggie, and I were our for a walk. Some friends were outside. They told us that they were pregnant, with their second. During this time in my life the announcement of someone being pregnant always left a little sting. However, this particular pregnancy was unexpected, and they seemed a little more exasperated than excited (they did eventually become excited, and they definitely love this child). I was both heartbroken, and pissed.
I came home that day and went to my bedroom. I sobbed as I told God just how unfair He was being. I let Him know just exactly how I felt about people who didn't want to be pregnant having multiple children and on and on. I carried on with my little fit for a while before I just layed there and cried. God allowed me to cry and whine for a while (much longer than I allow it from my daughter).
And then,tenderly and firmly, God let me know a couple of things. He first let me know that He could make it so that I could get pregnant. That wasn't too hard for Him, and was something He would be more than willing to do. He also clearly let me know that IF I got pregnant, it would not be the child He had promised us, and it wouldn't hold the same promises as our Abigail.
I won't say that the wait wasn't painful from there. This was revealed to me at the very beginning of our process so we still waited over two years from that point before we heard about Abigail. However, there was something about knowing that God really did have a plan that instantly took the bitterness away.
Like the blog I posted above talks about, it's really easy for me to look in the rear-view mirror and see how smooth that all was. A long wait ended in a beautiful relationship with Abigail's tummy mommy, and one truly amazing little girl. Our lives have been so full and rich, not only just being parents, but learning so much from God, as the result of getting to be Abigail's parents. The trip felt scary, and I white knuckled it for sure, but here we are.
And like any
In reality though, I am just trying to keep from feeling the pain again. Silly, I know. So last night as we watched a show together, and a couple finds out they are chosen to adopt a baby, I felt it. That ache that sat in my chest while we waited for Abigail. That feeling of longing for my child, and knowing that all I can do is buckle up, and hold on. I have been fighting it for a while, but couldn't control it any longer last night.
The truth is, despite that I have been on a very similar road, and despite that I can scoop up the most beautiful results in my arms, and kiss her repeatedly until she says, 'no sank you mama,' I am scared. I spent three years walking around with that pain. It just sat there, day in and day out. Sometimes it got worse, but it never went away. And honestly, I don't want to feel it again. I especially don't want to feel it again for three years.
It's that feeling of being heartsick, the feeling of hope being deferred; the reason that Abigail's middle name is Tohelet. 'Hope (Tohelet) deferred makes the heartsick, but a longing fulfilled is a tree of life.' Proverbs 13:12
I don't want to live heartsick. Yes, it's different this time, because I already have my first Tohelet upstairs sleeping right now. That doesn't make it easier. So we have buckled ourselves in, my knuckles are white, and I have tears streaming down my face. But somewhere in me, just like before, I know that one day, I will get to look back, and realize that this road wasn't so scary. And the company, the smiles, and the conversations I will get to have with the driver, will make the memory of this road even sweeter. There will be much laughter and celebration when we arrive at our next destination as well.
Longing for our next child,
Tuesday, August 2, 2011
That moment.
I have come a long way since that first time we heard about NF. My fears rarely overtake me anymore. I can get through the day without NF being a thought in my head most days. And even on the days I think about it, it is much less overwhelming.
Every now and then I have a moment where it all smacks me in the face at once. The feeling doesn't generally linger long, but just enough to make me feel like shuttering a little. The other morning as I was getting Abigail dressed I noticed a new cal spot on her and some more freckling. In the grand scheme of thing, these mean nothing more than 'she has this disorder.'
But for some reason that morning I was sitting in a doctor's office at Riley again watching the resident counting her cals. I was listening to him tell us this big word over and over again, and talk about tumors. I was hearing him try to reassure us that she would be fine, but feeling like I just needed to get the hell out of there. The moment passed quickly, but took me a few days to completely shake that feeling of dread and terror that comes over me when I remember hearing neurofibromatosis for the first time.
In all of those moments though I keep coming back to knowing that God has something specific planned both for Abigail, and for us being Abigail's parents. Her coming to be our daughter just lined up so perfectly that there can be no other explanation. And we had sat and discussed, read, and researched numerous special needs before Abigail was born. We talked about HIV, Down's syndrome, cerebral palsy, and drug and alcohol exposure. We discussed autism and on down the list of things I have dealt with as I have worked with numerous people with special needs. Never once did NF come up. Neither of us had ever even heard of it.
So while I wasn't surprised that we somehow managed to end up with a kiddos with lots of special medical needs. I had this nagging feeling that the having a child with NF was something that God lined up for some unknown reason. I wasn't sure if we would ever even find out here on earth.
Last night I sat next a little girl on the couch at the home of a family from our church. This is a large family (I think they have 9 kiddos at home) who had just had a baby. I had brought a meal and was holding their new sweet little one. I asked the little girl about the band-aid on her arm. She replied very nonchalantly she had an MRI that day. When I asked why she told me she had a bump on her head, and then proceeded to pull up her shirt to show me the 'brown spots' that she also had.
I nearly fell off the couch (and had to quickly remind myself I was holding a baby). I didn't know what to ask next because I wasn't sure how much the family new. The mom proceeded to tell me that the dad has been diagnosed with something called neurofibromatosis a few months ago.
I knew immediately in my heart of hearts that we were chosen for Abigail to walk through NF hand and hand with this family.
In a church of around 100 people, there are two families who are dealing with a disorder that is statistically 1 in every 2500-3000 people. Unbelievable. I thought again about sitting in that doctor's office a little over two years ago. This time it didn't bring that sense of dread and doom though. This time it brought that feeling of seeing God's hand at work in the lives of every last person, lining things up perfectly to bring himself the glory!
Enjoying seeing things from a different view,
Let the little children come to me...
I am going to share with you the words Abigail prayed at dinner the other night. Jason and I were stifling laughter and she squeezed her eyes shut and thanked the Lord. (I'll give you the Abigail version and the interpret for those who may need it).
Jeyuh,
Sank you fow Abigail. Sank you fow Mama. Sank you fow Papa. Sank you fow my gina. Sank you fow my cheek. Sank you fow helping my mouf not huwt. Sank you fow Mama's wing. Sank you fow Papa's wing. Sank you fow dis big sing of food Mama made. In Jeyuh name, Amen.
Jesus,
Thank you for Abigail. Thank you for Mama. Thank you for Papa. Thank you for my vagina. Thank you for my cheek. Thank you for helping my mouth not hurt. Thank you for Mama's ring. Thank you for Papa's ring. Thank you for this big thing of food Mama made. In Jesus name, Amen.
Not certain why the chicken le blanc we had for dinner that night made her think of her vagina, and be thankful for it, but who am I to hinder my little one from going to Jesus with her thoughts.
Laughing a lot,
Jeyuh,
Sank you fow Abigail. Sank you fow Mama. Sank you fow Papa. Sank you fow my gina. Sank you fow my cheek. Sank you fow helping my mouf not huwt. Sank you fow Mama's wing. Sank you fow Papa's wing. Sank you fow dis big sing of food Mama made. In Jeyuh name, Amen.
Jesus,
Thank you for Abigail. Thank you for Mama. Thank you for Papa. Thank you for my vagina. Thank you for my cheek. Thank you for helping my mouth not hurt. Thank you for Mama's ring. Thank you for Papa's ring. Thank you for this big thing of food Mama made. In Jesus name, Amen.
Not certain why the chicken le blanc we had for dinner that night made her think of her vagina, and be thankful for it, but who am I to hinder my little one from going to Jesus with her thoughts.
Laughing a lot,
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