Our fears of the symptoms we were seeing from Abigail were confirmed a week ago today. She has an optic glioma on her left optic nerve (a tumor common in NF). It is causing neurological symptoms and has caused her vision to become worse.
The words to describe how I feel aren't there. It seems like it can't actually be real. But, I wake up, and there she is with her glasses. And, questions. Looking to me for security in something that she isn't sure about.
As we try to process all of it, Jason asked the perfect question, 'what is your biggest fear with it?' I thought for a few minutes. And, the thought has continued to go through my mind since then.
My fear is that this steals her innocence. She no longer worries only about the things seven year olds worry about. She also worries about losing all of her vision in one eye. And, chemotherapy. She wants to know if she'll always have to wear glasses, now. Can the tumor just go away on it's own? What will her friends think if she tells them? Will it hurt? Will they do surgery?
And, as I answer those questions, I find myself completely unable to say the words 'we could pray' because my bigger fear is that it will rob her of her childlike faith. What if I say, 'we could pray that the tumor goes away on it's own' and it doesn't. What does she internalize about God? How do I tell her that, from my experience, prayer doesn't seem to change much externally?
I realize as I think these things, that they're really me, projecting those things that have shaken my own faith, onto my daughter. If she asks those big questions, I don't have any answers right now. I just have bigger questions. Ones that scare me. Ones that I've been wrestling with for quite some time. Ones, that I fear, I will wrestle with always, this side of heaven.
I want words, to wrap up neatly, all the hard things in this world, for my children. I want to be able to give them concrete reasons that bad things happen. I want to point to where God is in all of them. I have none of those things. They don't exist. And, when you're on the outside, looking on other people experiencing hard things, it's easy to say, 'well, sometimes hard things happen, and we just don't know why.' But, when you're staring into the big brown eyes of you daughter, and telling her she has a brain tumor, that doesn't cut it. Nothing does. But, you promise to go into battle with her. To answer questions. To hold her when she's scared. And, you say the things you know are true, even when they don't feel even a little bit true. And, you pray that somehow, her little heart is protected for just a little while longer.
Showing posts with label prayer. Show all posts
Showing posts with label prayer. Show all posts
Tuesday, August 23, 2016
Tuesday, March 18, 2014
broken.
most of you who read this blog probably know, or have figured out that i'm a Christian. with that being said, there are still things that some Christians practice that are far beyond my comprehension, and that leave my heart breaking. some of them I have experienced myself, others I just know of.
one thing in particular is the tendency, of often well meaning Christians, to pray for people with special needs. i'm talking walking up to someone in a mall that uses a wheelchair, proclaiming complete healing, and then, if it doesn't work, telling that person it is a sin in their life, or their lack of faith that prevents their healing.
thus far, nothing like this has happened to us with our little. and big's disabilities are far less obvious. however, I wanted to share a story. I do so having no idea what this man's intentions were, and not at all saying they were that of the stories like I told above.
a few weeks ago I was at church. shilo had been in her gait trainer during music dancing a little, and I had just taken her out. when I stood up, my husband (who runs sound in the back) got my attention and signed to me that the man between him, and me, walking towards us wanted to pray for shilo. I had never talked to this man before, but knew a little bit of who he was. I immediately tensed up as he walked towards us, fearing he would pray for her Down syndrome to be cured. (you can read here my thoughts on this, and why I disagree with the idea).
I began silently praying to myself that God would give him the words to pray, and that he would see Shilo for the beautiful little girl she was created to be, Ds and all. the whole thing lasted only a few moments, and I don't even remember what he specifically prayed. I do know that it wasn't for her to be healed. and I do know that when he got to us, he immediately teared up and said, 'oh my goodness, she is just beautiful.'
he talked to my husband afterwards, and said that when he got to us that he was really sort of overtaken by her beauty, and had a hard time talking. I felt like God showed him, in that moment, that she was just a little girl, fearfully and wonderfully created, in His image.
I've realized having two kiddos with genetic disorders that there are things about the silent and hidden disorders that are hard. but, there are also hard things about the disorders that are obvious. many people tell me they are so sorry when they see that shilo has Ds. they see her as broken. as less than.
what people fail to realize is that in our family of four, there is not one of us who is more broken than the next. I bet if you picked apart our genes, Jason and I would have some crazy stuff going on too. but even more than that, the only thing that differs between shilo, and her extra chromosome, and the rest of the world, is that she wears her differences on an easy to see level. her almond shaped eyes give her away.
my eyes, on the other hand, hide the hundreds and thousands of things about me that are broken. the anger I struggle with. the fact that I often don't sleep well. my anxiety. oh my word the anxiety. there are so many things about me that aren't up to par with most of the rest of the world. but, when people see me, they think of me as average.
my goal in raising shilo is not to make her blend in. my goal, is for the world to see her as whole. complete. no more broken than any of the rest of us. most days, my experience is that she's less broken. she is content. she is joyful. she works hard. she is determined. she is not easily swayed by others reactions. she is forgiving. she loves big.
one thing in particular is the tendency, of often well meaning Christians, to pray for people with special needs. i'm talking walking up to someone in a mall that uses a wheelchair, proclaiming complete healing, and then, if it doesn't work, telling that person it is a sin in their life, or their lack of faith that prevents their healing.
thus far, nothing like this has happened to us with our little. and big's disabilities are far less obvious. however, I wanted to share a story. I do so having no idea what this man's intentions were, and not at all saying they were that of the stories like I told above.
a few weeks ago I was at church. shilo had been in her gait trainer during music dancing a little, and I had just taken her out. when I stood up, my husband (who runs sound in the back) got my attention and signed to me that the man between him, and me, walking towards us wanted to pray for shilo. I had never talked to this man before, but knew a little bit of who he was. I immediately tensed up as he walked towards us, fearing he would pray for her Down syndrome to be cured. (you can read here my thoughts on this, and why I disagree with the idea).
I began silently praying to myself that God would give him the words to pray, and that he would see Shilo for the beautiful little girl she was created to be, Ds and all. the whole thing lasted only a few moments, and I don't even remember what he specifically prayed. I do know that it wasn't for her to be healed. and I do know that when he got to us, he immediately teared up and said, 'oh my goodness, she is just beautiful.'
he talked to my husband afterwards, and said that when he got to us that he was really sort of overtaken by her beauty, and had a hard time talking. I felt like God showed him, in that moment, that she was just a little girl, fearfully and wonderfully created, in His image.
I've realized having two kiddos with genetic disorders that there are things about the silent and hidden disorders that are hard. but, there are also hard things about the disorders that are obvious. many people tell me they are so sorry when they see that shilo has Ds. they see her as broken. as less than.
what people fail to realize is that in our family of four, there is not one of us who is more broken than the next. I bet if you picked apart our genes, Jason and I would have some crazy stuff going on too. but even more than that, the only thing that differs between shilo, and her extra chromosome, and the rest of the world, is that she wears her differences on an easy to see level. her almond shaped eyes give her away.
my eyes, on the other hand, hide the hundreds and thousands of things about me that are broken. the anger I struggle with. the fact that I often don't sleep well. my anxiety. oh my word the anxiety. there are so many things about me that aren't up to par with most of the rest of the world. but, when people see me, they think of me as average.my goal in raising shilo is not to make her blend in. my goal, is for the world to see her as whole. complete. no more broken than any of the rest of us. most days, my experience is that she's less broken. she is content. she is joyful. she works hard. she is determined. she is not easily swayed by others reactions. she is forgiving. she loves big.
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, 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,
Wednesday, December 29, 2010
Complaining and Contentment.
I haven't posted any pictures for a few post, and I have lots, but they are for a different day. So here's a little peek: Abigail and Papa at her ballet performance.
Notice the date on this post is a few days ago. The thing is, I have started this post a few times, and then when I come back to reread it, it's just fussy. There have been some frustrating things in the past few weeks with doctors and prescriptions. And perhaps some would say that I have a right to be fussy about it.
The truth of the matter is that if I start fussing and complaining, the next thing I know I'm in the desert cursing the provisions of bread and meat, and clothing that doesn't wear out. And all of that just leads to more and more whining and complaining and leaves me in the desert even longer.
I often hear people say that it's fine to complain about things or to vent. I can't find anything in the Bible where that is the case. I only find things about rejoicing in the day the Lord has made, and rejoicing in the Lord always.
Please don't read that as saying if you are in a painful circumstance that you must just be happy. There is a huge difference between sorrow, righteous anger, and complaining. King David never complained about his circumstances when he was hiding from King Saul. He did cry out to the Lord, ask questions, and lament about the situation.
Complaining and fussing often stem from a false sense of justice, and are things that often could be changed by your own doing. Let's take gas prices for example. Everyone complains about how much gas cost. Most people would tell you that they can't do anything about it. You can. Drive less. Choose a gas efficient car. Go grocery shopping with a friend to cut gas in half. In technicality those things don't change the gas prices, they do however change the amount you spend on gas.
I made a conscious choice a while ago to do my best not to complain. I have found that since I stopped complaining about things I don't like about myself, I have stopped finding as many flaws, not only in my, but in others. I have even started to find the things I like about me and be able to tell other people what I like about them. This holds true for things like not complaining about my husband, my daughter, our finances, our house, and so on. If I choose to see the good in my husband, my daughter, and my life, I find myself enjoying a place of contentment.
I hope you noticed the beginning of this being about how I was writing things that were fussy. This post was mostly a reminder for me about why it's important to CHOOSE contentment over complaining, venting, and being fussy. I can always find a valid reason to complain. Finding a way to be content requires so much more of my sinful heart being transformed.
"I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through Him who gives me strength." Philippians 4:11-13
Still learning to be content in all things,
Monday, December 27, 2010
Another little one.
I have always had some sort of heavy draw towards people with special needs. I am not certain that I can even trace back how old I was when it started. I remember playing with the boy in my first grade class that was in a wheelchair. He could whip me at basketball. And as I got older I remembered being drawn to try to befriend the other kids who got made fun of for being in remedial classes, getting extra help, and so on.
I spent seven years from junior high until I graduated volunteering in the special education classrooms during my study hall. I also had a cousin who had Down's syndrome that I adored. She was just a bright, funny, happy, and stubborn girl who loved country music and people.
Nobody was surprised when I chose special education as my major in college. However, I quickly realized that although I enjoyed working with people with special needs, I had no desire to teach.
Since that time I have done respite care for families of children with special needs, had a nephew born with cerebral palsy, and am now walking the road of a child with special needs myself.
And as Jason and I find ourselves discussing kiddo number two, whether to pursue another child with NF, adopt domestically, older child or infant again and so on and so on; I have had one thought alone.
When we found out about Abigail and how old her birth parents were I was prepared for a little girl with Down's syndrome. I was almost shocked when the ultrasound didn't show it. We knew she still might have some other issues, but were a little unprepared for how things have unfolded. Don't get me wrong, had we known about the NF before she was born we would have only gone into the situation with more knowledge about NF. Abigail would still be where she is right now.
Since that time though I have learned a lot of new things about Down's children and have been more and more drawn to adopting a child with it.
We are told in Matthew 25:40, "Whatever you did for one of the least of these brothers and sisters of mine, you did for me." And hearing that in America, 90% of pregnancies where the child is found to have down's syndrome end in abortion, tugged on my heart making me feel like this is one of the least of these. Then I read how in other countries children born with down syndrome are put into orphanages. If they aren't adopted by the age of 5 they are then sent to mental institutions where a large percentage of them die in the first few years from neglect. And those that don't will live their lives hidden from the public. Societies, ours included, are throwing these children away. These children are the least of these.
So with each new thing I read and think about my heart feels like it's being drawn more and more to adopting one of these precious little ones. Jason and I have talked about it quite a bit. Much like I did with Abigail, I feel very much like we are "expecting." Don't get to crazy when you read that. We were expecting Abigail for three years. :) We haven't even so much as begun the home study process. We are at the very beginning where we are praying about the child God has for us.
I often wonder if I could handle two children with special needs. More doctors appointments, more therapies, so on and so on. Every time I think this though, I hear, "My grace is sufficient for you, for my power is made perfect in weakness." I know that to be true. With infertility, waiting on a baby, and hearing a diagnoses for Abigail, God's grace and mercy has grown with our need for it. And I know that if we add another child with special needs that His grace will continue to grow.
And as always our God likes to give us little presents, things that help us to know that we are hearing from Him, even if everyone around us might think we are crazy. So I will end with a little story that made my heart flutter and my eyes well up with tears.
On Thursday we had to stop by one of Abigail's doctors offices in Indianapolis on the way out of town. I ran in to pick up what we needed. As I am stepping on the elevator, a father and his daughter step in as well. His daughter has Down's syndrome. I smiled at them and said hello. The little girl (probably around 5) walked over stood next to me and grabbed my hand. She held it the rest of the ride up and as we walked through the hospital she talked to me. Her dad was slightly embarrassed, but I reassured him that it was fine. When I finally had to let go to part directions I could feel God impressing on my heart that He had planned that moment.
We would love if you would all join us in prayer as we await the amazing story that God will weave for our second child,
I spent seven years from junior high until I graduated volunteering in the special education classrooms during my study hall. I also had a cousin who had Down's syndrome that I adored. She was just a bright, funny, happy, and stubborn girl who loved country music and people.
Nobody was surprised when I chose special education as my major in college. However, I quickly realized that although I enjoyed working with people with special needs, I had no desire to teach.
Since that time I have done respite care for families of children with special needs, had a nephew born with cerebral palsy, and am now walking the road of a child with special needs myself.
And as Jason and I find ourselves discussing kiddo number two, whether to pursue another child with NF, adopt domestically, older child or infant again and so on and so on; I have had one thought alone.
When we found out about Abigail and how old her birth parents were I was prepared for a little girl with Down's syndrome. I was almost shocked when the ultrasound didn't show it. We knew she still might have some other issues, but were a little unprepared for how things have unfolded. Don't get me wrong, had we known about the NF before she was born we would have only gone into the situation with more knowledge about NF. Abigail would still be where she is right now.
Since that time though I have learned a lot of new things about Down's children and have been more and more drawn to adopting a child with it.
We are told in Matthew 25:40, "Whatever you did for one of the least of these brothers and sisters of mine, you did for me." And hearing that in America, 90% of pregnancies where the child is found to have down's syndrome end in abortion, tugged on my heart making me feel like this is one of the least of these. Then I read how in other countries children born with down syndrome are put into orphanages. If they aren't adopted by the age of 5 they are then sent to mental institutions where a large percentage of them die in the first few years from neglect. And those that don't will live their lives hidden from the public. Societies, ours included, are throwing these children away. These children are the least of these.
So with each new thing I read and think about my heart feels like it's being drawn more and more to adopting one of these precious little ones. Jason and I have talked about it quite a bit. Much like I did with Abigail, I feel very much like we are "expecting." Don't get to crazy when you read that. We were expecting Abigail for three years. :) We haven't even so much as begun the home study process. We are at the very beginning where we are praying about the child God has for us.
I often wonder if I could handle two children with special needs. More doctors appointments, more therapies, so on and so on. Every time I think this though, I hear, "My grace is sufficient for you, for my power is made perfect in weakness." I know that to be true. With infertility, waiting on a baby, and hearing a diagnoses for Abigail, God's grace and mercy has grown with our need for it. And I know that if we add another child with special needs that His grace will continue to grow.
And as always our God likes to give us little presents, things that help us to know that we are hearing from Him, even if everyone around us might think we are crazy. So I will end with a little story that made my heart flutter and my eyes well up with tears.
On Thursday we had to stop by one of Abigail's doctors offices in Indianapolis on the way out of town. I ran in to pick up what we needed. As I am stepping on the elevator, a father and his daughter step in as well. His daughter has Down's syndrome. I smiled at them and said hello. The little girl (probably around 5) walked over stood next to me and grabbed my hand. She held it the rest of the ride up and as we walked through the hospital she talked to me. Her dad was slightly embarrassed, but I reassured him that it was fine. When I finally had to let go to part directions I could feel God impressing on my heart that He had planned that moment.
We would love if you would all join us in prayer as we await the amazing story that God will weave for our second child,
Tuesday, December 14, 2010
"Tis the season.
As I was sitting at church on Sunday my mind drifted to Abigail, and where we are right now in life with her. It seems overwhelming at times, but I couldn't feel anything but hopeful. It's a season wrought with hope. And quickly I was reminded of where I was three years ago.
It was the worst Christmas I can remember. I was extremely depressed, and was begging God for a baby. I specifically asked God to bring me a Christmas miracle. When January rolled around and we hadn't gotten that phone call yet I sunk even lower. I was at the point where I was trying hard to let the desire to be a mama just die. But March came, and with the melting of the snow my heart seemed to soften a little too. And in April I sat praying one afternoon and heard God tell me to pray that our Abigail would come now. So I prayed, and called and asked others to do the same. The rest of the story is that in May we were chosen by Abigail's birth mom, and in September she was born.
However it wasn't lost on me that in December, when I was praying for my Christmas miracle, Abigail was being conceived. What I thought would be a miracle, and what it actually ended up being, were different, but beautiful none the less.
And so as I sit here during this season of advent, "expectation" I find myself unable to do anything but hope. I feel the hope that was born over 2000 years ago. I hope for the return of my Savior. And I hope for another miracle for my little girl.
The official update is that we went to the neurologist this morning and all signs point to a plexiform neurofibroma (although the doctor couldn't technically diagnose it because the MRI didn't make it clear). These specific type of tumors are much harder to deal with than regular neurofibromas. So for this reason we will be consulting with a surgeon to see if we can have it removed early. We also will have the added weight of having to cover whatever cost of this procedure and appointments ourselves. Our insurance will not pay for it because it is out of state and considered elective. However the doctor we are seeing is the best of the best and world renown for removing plexis. So we will figure out the finances for it.
Leaving you with the theme of the last six years of our lives, hope,
It was the worst Christmas I can remember. I was extremely depressed, and was begging God for a baby. I specifically asked God to bring me a Christmas miracle. When January rolled around and we hadn't gotten that phone call yet I sunk even lower. I was at the point where I was trying hard to let the desire to be a mama just die. But March came, and with the melting of the snow my heart seemed to soften a little too. And in April I sat praying one afternoon and heard God tell me to pray that our Abigail would come now. So I prayed, and called and asked others to do the same. The rest of the story is that in May we were chosen by Abigail's birth mom, and in September she was born.
However it wasn't lost on me that in December, when I was praying for my Christmas miracle, Abigail was being conceived. What I thought would be a miracle, and what it actually ended up being, were different, but beautiful none the less.
And so as I sit here during this season of advent, "expectation" I find myself unable to do anything but hope. I feel the hope that was born over 2000 years ago. I hope for the return of my Savior. And I hope for another miracle for my little girl.
The official update is that we went to the neurologist this morning and all signs point to a plexiform neurofibroma (although the doctor couldn't technically diagnose it because the MRI didn't make it clear). These specific type of tumors are much harder to deal with than regular neurofibromas. So for this reason we will be consulting with a surgeon to see if we can have it removed early. We also will have the added weight of having to cover whatever cost of this procedure and appointments ourselves. Our insurance will not pay for it because it is out of state and considered elective. However the doctor we are seeing is the best of the best and world renown for removing plexis. So we will figure out the finances for it.
Leaving you with the theme of the last six years of our lives, hope,
Friday, December 3, 2010
Praying for monkey.
The other day I heard Abigail coming down the steps. The next thing I knew it was quiet. I peaked around the corner and she was sitting on the step rocking her baby and patting her back.
I have an incredibly compassionate daughter. I am often blown away at how sweet she is with her baby dolls and stuffed animals. She sometimes even hugs and kisses inanimate objects (like our blue car). She is a little girl with a very big heart.
She also has begun to pretend all the time. She cooks when we cook. She likes to dress up, wear a purse, go shopping, drive her car, and about a million other things. It's fun to get to see your kids act things out. It gives you a small glimpse of how they view life. Sometimes I see things that make me realize I might be doing okay as a mama. Sometimes I get a reality check and realize I have some things I need to do differently.
In general Abigail is just becoming more aware of things. She is interacting more, and remembering (and retelling) more. This past week she was sitting on the potty and looked down and saw a few of her cafe au lait spots. She asked, "that?" I told her it was called a cafe au lait spot, but we just call them her chocolate chips and pretended to eat one. She later showed her papa and told him it was her "chochit chip." There is both joy and sorrow in having her realize she has spots on her. She is not self-conscious yet, so it's nice to tell her about the spots before she is old enough to experience the teasing from them. It's sad to know it is something that she may not always be comfortable with. I hope and pray that we tell her how beautiful she is enough that these spots won't matter some day.
A few weeks ago we got a hand me down cozy coupe car from her cousins. She LOVES it. However when she got in it the first time and told me she was going to the doctor I felt a small sting of pain. She is really good at pretending with her doctor kit. She knows what everything in it is for. It's pretty cute most of the time (although if you are her patient it's a bit more like getting beat up). I just can't help but think at the same time that if it wasn't for the combination of asthma, NF, and the incredible amount of time she spent with "common illnesses" the first two years (it seems to have slowed down) she would not be as great at it. I mean really, what two year old knows what a blood pressure cuff is, and that it squeezes your arm. But she is pretending what she knows. Driving to the doctor, and getting checked out.
But probably the biggest blow has come this past week. As we continue to wait (impatiently) to find out more from the doctor about the tumor in her leg, she continues to have a little bit of pain and an inordinate amount of itching (very common with NF, and NF tumors). She has started telling me that her stuffed animals and baby dolls have boo-boos on their leg or that they itch. It is such a "normal" part of her life that it is acted out in her pretend play. There is nothing that tugs at a parents heart like seeing their child act out their medical issues.
Like I mentioned above though, there are moments in her pretending that I think we might be doing okay as parents. And even though their is sorrow in watching her pretend her monkey has a boo-boo on his leg, I can't help but overflow when I watch the scene unfold:
Abigail, "Muhnee boo-boo, leg. Swatch."
Mama, "Monkey has a boo-boo on his leg and it itches."
A, "Uh-huh. (Hugs monkey to her) Sowwee muhnee boo-boo. (Kisses him) Pway. Jeyuh, boo-boo, swatch, amen."
Sometimes she asks me to pray for her animal, but most of the time she does. And whenever she is in pain or extremely itchy she asks Jason or I to pray.
So even if I mess up lots as a parent (and I do), I am so glad that the thing she has picked up on is that we can always go to Jesus. He is the author and perfecter of my faith, and He is using a sweet two year old to grow it in ways I never would have imagined.
Thankful for the trials of life that draw me closer to Him,
I have an incredibly compassionate daughter. I am often blown away at how sweet she is with her baby dolls and stuffed animals. She sometimes even hugs and kisses inanimate objects (like our blue car). She is a little girl with a very big heart.
She also has begun to pretend all the time. She cooks when we cook. She likes to dress up, wear a purse, go shopping, drive her car, and about a million other things. It's fun to get to see your kids act things out. It gives you a small glimpse of how they view life. Sometimes I see things that make me realize I might be doing okay as a mama. Sometimes I get a reality check and realize I have some things I need to do differently.
In general Abigail is just becoming more aware of things. She is interacting more, and remembering (and retelling) more. This past week she was sitting on the potty and looked down and saw a few of her cafe au lait spots. She asked, "that?" I told her it was called a cafe au lait spot, but we just call them her chocolate chips and pretended to eat one. She later showed her papa and told him it was her "chochit chip." There is both joy and sorrow in having her realize she has spots on her. She is not self-conscious yet, so it's nice to tell her about the spots before she is old enough to experience the teasing from them. It's sad to know it is something that she may not always be comfortable with. I hope and pray that we tell her how beautiful she is enough that these spots won't matter some day.
A few weeks ago we got a hand me down cozy coupe car from her cousins. She LOVES it. However when she got in it the first time and told me she was going to the doctor I felt a small sting of pain. She is really good at pretending with her doctor kit. She knows what everything in it is for. It's pretty cute most of the time (although if you are her patient it's a bit more like getting beat up). I just can't help but think at the same time that if it wasn't for the combination of asthma, NF, and the incredible amount of time she spent with "common illnesses" the first two years (it seems to have slowed down) she would not be as great at it. I mean really, what two year old knows what a blood pressure cuff is, and that it squeezes your arm. But she is pretending what she knows. Driving to the doctor, and getting checked out.
But probably the biggest blow has come this past week. As we continue to wait (impatiently) to find out more from the doctor about the tumor in her leg, she continues to have a little bit of pain and an inordinate amount of itching (very common with NF, and NF tumors). She has started telling me that her stuffed animals and baby dolls have boo-boos on their leg or that they itch. It is such a "normal" part of her life that it is acted out in her pretend play. There is nothing that tugs at a parents heart like seeing their child act out their medical issues.
Like I mentioned above though, there are moments in her pretending that I think we might be doing okay as parents. And even though their is sorrow in watching her pretend her monkey has a boo-boo on his leg, I can't help but overflow when I watch the scene unfold:
Abigail, "Muhnee boo-boo, leg. Swatch."
Mama, "Monkey has a boo-boo on his leg and it itches."
A, "Uh-huh. (Hugs monkey to her) Sowwee muhnee boo-boo. (Kisses him) Pway. Jeyuh, boo-boo, swatch, amen."
Sometimes she asks me to pray for her animal, but most of the time she does. And whenever she is in pain or extremely itchy she asks Jason or I to pray.
So even if I mess up lots as a parent (and I do), I am so glad that the thing she has picked up on is that we can always go to Jesus. He is the author and perfecter of my faith, and He is using a sweet two year old to grow it in ways I never would have imagined.
Thankful for the trials of life that draw me closer to Him,
Tuesday, November 30, 2010
and again why we pray.
Okay first of all if you haven't yet please read "Why we Pray." It proceeds this post and will help you follow the whole story a wee bit better. I'll wait here until you get back.
Welcome back. So the rest of the story goes something like this. We first found out about NF in May of '09. Abigail was mostly diagnosed (this is a little complicated to explain) in October of the same year. I'm not sure how long it lasted, but I spent many months...probably close to a year in a sort of fog. Every new spot, cry, and bump on her skin sent my head into a spin. I sat worrying about all of the worst things that could happen. I'm sure it didn't help that in that time period she was also diagnosed with asthma and tested for leukemia. None the less, I felt like someone had screwed up my whole world. And like the Israelites, even after seeing God touch my daughter's body, I still wavered crying out to God, "Where are you? Did you bring me into parenthood only to take the little girl you blessed me with in the first place?"
But somewhere in there I began to not just speak it, but really believe that God was still who He said He was. He was still good. He didn't give this to my daughter. It happened simply because of the sin that is in our world. When man fell in the garden, death, disease, pain, and suffering were introduced into being. Fast forward quite a bit and you can look around and see the effects of sin coming into the world. One of those effects is the disorder neurofibromatosis.
Somehow though, almost miraculously, over the last six months I have found peace. I have begun living again, and even with lots of crazy things still happening, new little things coming up, and three MRI's since June, I have been fine.
The honest truth is that it's still painful. Not knowing how much suffering my child will endure, but knowing that she will most likely experience pain is grueling. But over the last year and a half God has strengthened me. I feel like I can endure whatever comes because I know He is there.
"The Lord gives strength to his people: the Lord blesses his people with peace." Psalm 29:11
He also does all things at just the right time. If they had found any tumors in the beginning of our journey I would have possibly had a mental breakdown. That is not an exaggeration. But on Wednesday when we got the preliminary results of Abigail's MRI and found out that she has a tumor I felt strangely peaceful.
I have spent time grieving. It is sad to me that the pain she is experiencing in her leg (and most likely her back from compensating) is because of something being in her leg that shouldn't be. The incredible itching she has in her leg is also from it. But I have not for one moment questioned God. My faith has not wavered.
We still do not have a more precise statement from the doctor yet. But it is most likely that the tumor is congenital. It has always been there. It has been the reason for lots of little things going on with her.
I have sat over the past week of knowing and wondered if we hadn't prayed if she would have ever walked. I don't believe Abigail's healing rest on my shoulders, and hope that it doesn't depend upon my faith (or she is in trouble). I do believe that our God is good and wants to hear from us. He wants us to pray, ask, talk, and cry out. He doesn't always answer the way we had hoped. But He does always answer. And for that reason we will continue to pray.
*Just so you all know we have waited to share so we had time to process before going completely out there with all of it. We still do not have all of the information yet, and will not share things until we are ready.*
Please join us on our knees for our daughter,
Welcome back. So the rest of the story goes something like this. We first found out about NF in May of '09. Abigail was mostly diagnosed (this is a little complicated to explain) in October of the same year. I'm not sure how long it lasted, but I spent many months...probably close to a year in a sort of fog. Every new spot, cry, and bump on her skin sent my head into a spin. I sat worrying about all of the worst things that could happen. I'm sure it didn't help that in that time period she was also diagnosed with asthma and tested for leukemia. None the less, I felt like someone had screwed up my whole world. And like the Israelites, even after seeing God touch my daughter's body, I still wavered crying out to God, "Where are you? Did you bring me into parenthood only to take the little girl you blessed me with in the first place?"
But somewhere in there I began to not just speak it, but really believe that God was still who He said He was. He was still good. He didn't give this to my daughter. It happened simply because of the sin that is in our world. When man fell in the garden, death, disease, pain, and suffering were introduced into being. Fast forward quite a bit and you can look around and see the effects of sin coming into the world. One of those effects is the disorder neurofibromatosis.
Somehow though, almost miraculously, over the last six months I have found peace. I have begun living again, and even with lots of crazy things still happening, new little things coming up, and three MRI's since June, I have been fine.
The honest truth is that it's still painful. Not knowing how much suffering my child will endure, but knowing that she will most likely experience pain is grueling. But over the last year and a half God has strengthened me. I feel like I can endure whatever comes because I know He is there.
"The Lord gives strength to his people: the Lord blesses his people with peace." Psalm 29:11
He also does all things at just the right time. If they had found any tumors in the beginning of our journey I would have possibly had a mental breakdown. That is not an exaggeration. But on Wednesday when we got the preliminary results of Abigail's MRI and found out that she has a tumor I felt strangely peaceful.
I have spent time grieving. It is sad to me that the pain she is experiencing in her leg (and most likely her back from compensating) is because of something being in her leg that shouldn't be. The incredible itching she has in her leg is also from it. But I have not for one moment questioned God. My faith has not wavered.
We still do not have a more precise statement from the doctor yet. But it is most likely that the tumor is congenital. It has always been there. It has been the reason for lots of little things going on with her.
I have sat over the past week of knowing and wondered if we hadn't prayed if she would have ever walked. I don't believe Abigail's healing rest on my shoulders, and hope that it doesn't depend upon my faith (or she is in trouble). I do believe that our God is good and wants to hear from us. He wants us to pray, ask, talk, and cry out. He doesn't always answer the way we had hoped. But He does always answer. And for that reason we will continue to pray.
*Just so you all know we have waited to share so we had time to process before going completely out there with all of it. We still do not have all of the information yet, and will not share things until we are ready.*
Please join us on our knees for our daughter,
Friday, November 26, 2010
Why we pray.
At nine months old Abigail couldn't/wouldn't put weight on her legs. If you held her up to a standing type position she would stick her feet straight out. If you put her in the exersaucer they sort of just dangled. We had just found out that she had NF1. I had known for a while she wasn't putting her legs down like most babies did, but kept it stored away for "just in case." So I mentioned it at her nine month check up. The doctor thought it constituted further investigation, and ordered an MRI. Insurance denied it. 
So at this point we were stuck trying to figure out what to do. Our pcp could appeal to our insurance company. We didn't have an appointment with the NF clinic until October (this was July). Or we could apply for a state insurance specifically for children with special needs that MIGHT cover it. I felt so helpless to figure out what was going on with our baby.
I was reading in James one night and had to stop at this part:
"Is any one of you in trouble? He should pray. Is anyone happy? Let him sing songs of praise. Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up." -James 5:13-14
I immediately felt like God was asking me to be obedient to His word. I didn't feel like He would or wouldn't heal her. Just that His word said to have the elders pray. So we did. And a few night later our pastor and his wife and children, as well as two of the elders and their families came and layed hands on Abigail, anointed her with oil and prayed. I could feel God moving. I didn't know what He was doing, but knew that He wanted to show Himself.
Before they all left our pastor's wife held Abigail up and she put weight on her legs. I was astonished, and wasn't certain if I believed it. I couldn't get her to do it again and thought it was probably just a fluke.
The next day we were playing at a friends house whom I had told all of the previous too. I was showing her how Abigail couldn't put weight on her legs, but instead all she kept doing was standing on her legs. I was nearly in tears as I watched it happen.
Over the next few months Abigail began to crawl finally, pull herself up, and eventually walk. With each new milestone I never forgot that God healed her. We didn't know if there was a tumor somewhere He had healed, if the leg issues were from her low muscle tone, or if we would ever know what He had healed. We simply rejoiced at our God's ability to perform miracles. And I still look at her sometimes, standing, dancing, jumping, and (making an attempt at) running and know that God did something, and has something awesome planned for her life.
There is more to this story....so you will have to stay tuned.
Tuesday, November 23, 2010
What do you ask for?
As I sat reading in Psalms this afternoon I could feel my heart stirring. I love the way David writes so truthfully; how his emotions are so much like mine floating up and down with each new twist and turn of events. I also relate because I express my thoughts and emotions much better by writing them down.
After I layed the Bible down I sat there thinking and trying to pray. I say trying because with each fleeting thought all I could come back to was 'I don't know what to pray.' I don't know what to ask for on behalf of my sweet girl going into tomorrow. Peace, comfort, and mercy are almost always at the front of it. But beyond that what else do I ask for.
I can pray that they don't find anything, but in reality they might. I can pray that if they find something God is able to be glorified by our response as well as Abigail's response throughout her lifetime. I can pray for answers.
I then sat and thought about what do I ask for my friend's children with special needs? I generally pray whatever it is they ask for; healing, comfort, peace, and so on. But what if I ask for the wrong thing for my baby. What if I should be asking only for the strength to walk through, but I am asking for answers. And certainly there are no "wrong" prayers. God wants us to ask for things.
As I sat there thinking though, the sweet little prayers that Abigail prays flowed through my mind. They are often something like this, "Jeyah, Guy, boo-boo, help. Sarah, boo, ahhh! Mamal atar, cupcake. Noo noo ding ding. Amen."
I doubt very much of that made sense to any of you. But as her parent, I know what she is trying to say. I know what she is asking for, and I love that she just tells Jesus things. Sometimes her prayers are even more simple than that. I was then reminded of yesterday morning. We woke up to rain. Abigail loves to go outside when it's raining. By the time we ran our errand yesterday morning it had stopped. She asked me if I could make it rain and thunder. I responded by telling her that mama couldn't do it, but she could ask Jesus. She stopped as we were walking into the store and said, "Jeyah, rain, thunder. Amen." Last night as I was sitting on the couch and it began raining Jason looked at me and said, "Is that thunder?" I couldn't help but find the beauty in it. My sweet little girl asked Jesus to make it rain and thunder during a time of year where we are often seeing snow. And it did just that.
So after thinking all of this through I decided to try to pray more like my daughter. My prayer going into tomorrow is simply this, "Jesus, Abigail. Amen."
What do you pray for you children?
After I layed the Bible down I sat there thinking and trying to pray. I say trying because with each fleeting thought all I could come back to was 'I don't know what to pray.' I don't know what to ask for on behalf of my sweet girl going into tomorrow. Peace, comfort, and mercy are almost always at the front of it. But beyond that what else do I ask for.
I can pray that they don't find anything, but in reality they might. I can pray that if they find something God is able to be glorified by our response as well as Abigail's response throughout her lifetime. I can pray for answers.
I then sat and thought about what do I ask for my friend's children with special needs? I generally pray whatever it is they ask for; healing, comfort, peace, and so on. But what if I ask for the wrong thing for my baby. What if I should be asking only for the strength to walk through, but I am asking for answers. And certainly there are no "wrong" prayers. God wants us to ask for things.
As I sat there thinking though, the sweet little prayers that Abigail prays flowed through my mind. They are often something like this, "Jeyah, Guy, boo-boo, help. Sarah, boo, ahhh! Mamal atar, cupcake. Noo noo ding ding. Amen."
I doubt very much of that made sense to any of you. But as her parent, I know what she is trying to say. I know what she is asking for, and I love that she just tells Jesus things. Sometimes her prayers are even more simple than that. I was then reminded of yesterday morning. We woke up to rain. Abigail loves to go outside when it's raining. By the time we ran our errand yesterday morning it had stopped. She asked me if I could make it rain and thunder. I responded by telling her that mama couldn't do it, but she could ask Jesus. She stopped as we were walking into the store and said, "Jeyah, rain, thunder. Amen." Last night as I was sitting on the couch and it began raining Jason looked at me and said, "Is that thunder?" I couldn't help but find the beauty in it. My sweet little girl asked Jesus to make it rain and thunder during a time of year where we are often seeing snow. And it did just that.
So after thinking all of this through I decided to try to pray more like my daughter. My prayer going into tomorrow is simply this, "Jesus, Abigail. Amen."
What do you pray for you children?
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