Friday, October 21, 2011
Sunday, October 16, 2011
The good stuff.
Life is all about balance, it seems. Finding that perfect balance of good and bad, happy and sad, love and hate...it's what we humans strive for. We crave it. And, at the end of the day, I think we all hope and pray that the scale tips a tiny bit to the good side. Last week was hard for me. Although I did my absolute best to put that new diagnosis out of my head and just move forward, I'm still human. In the dark of the night, words haunt you. For the past few days, those words have haunted me.
Today, I took a step back and really thought it through. The words "brain bleed" haunted me. The words "cerebral palsy" haunted me. The word "stroke" still haunts me. "Shunt failure" will ALWAYS haunt me. Still...they are only words. I need to achieve a balance!!
So, tonight was the first time PeeWee's sang for the year. To be 100% honest, I dread the performances. I can remember when Gracie was really little, watching the kids up there singing. I would smile and giggle and daydream about when she was old enough to sing with them. My daydreams didn't include me having to stand next to her and tell her to stand up, stay still, don't jump, etc. That's what I do though, and I do it gladly. It was our choice to have her be in the club. It would have been much easier to just have her sit it out until she could stay still and pay attention. She has an 80% injured brain though, so whether she'll ever really be able to sit still is kind of up in the air!! We wanted her to be with the other kids her age and be a part of the activities of the church. She gets so much out of it, too!!
Last year, she stood up there with the other PeeWee's every performance, and never uttered a word from the songs. It looked like tonight would be the same. The kids got through the first two verses of the song and she never even tried to sing (though she knows every line). Then the third verse started and she got excited and jumped up and down and said, rather loudly- "This is my favorite song!!" Then it happened. She sang. "He invites me to His bakery table. His banner over me is love." Yes she said bakery. It's ok, I'll take it.
I almost made it, but I didn't. I had tears streaming before we got off the platform, and had to go to the ladies room to just sob for a few minutes. You know those wonderful, POWERFUL, cleansing, HAPPY tears? Some more words that haunted me?? "She may never talk again." Well, tonight....she sang.
Balance. Tonight, it's tipping toward the good stuff.
Today, I took a step back and really thought it through. The words "brain bleed" haunted me. The words "cerebral palsy" haunted me. The word "stroke" still haunts me. "Shunt failure" will ALWAYS haunt me. Still...they are only words. I need to achieve a balance!!
So, tonight was the first time PeeWee's sang for the year. To be 100% honest, I dread the performances. I can remember when Gracie was really little, watching the kids up there singing. I would smile and giggle and daydream about when she was old enough to sing with them. My daydreams didn't include me having to stand next to her and tell her to stand up, stay still, don't jump, etc. That's what I do though, and I do it gladly. It was our choice to have her be in the club. It would have been much easier to just have her sit it out until she could stay still and pay attention. She has an 80% injured brain though, so whether she'll ever really be able to sit still is kind of up in the air!! We wanted her to be with the other kids her age and be a part of the activities of the church. She gets so much out of it, too!!
Last year, she stood up there with the other PeeWee's every performance, and never uttered a word from the songs. It looked like tonight would be the same. The kids got through the first two verses of the song and she never even tried to sing (though she knows every line). Then the third verse started and she got excited and jumped up and down and said, rather loudly- "This is my favorite song!!" Then it happened. She sang. "He invites me to His bakery table. His banner over me is love." Yes she said bakery. It's ok, I'll take it.
I almost made it, but I didn't. I had tears streaming before we got off the platform, and had to go to the ladies room to just sob for a few minutes. You know those wonderful, POWERFUL, cleansing, HAPPY tears? Some more words that haunted me?? "She may never talk again." Well, tonight....she sang.
Balance. Tonight, it's tipping toward the good stuff.
Tuesday, October 11, 2011
The hard stuff
Sometimes life is just plain hard. Today was one of those days. I was trucking along at work, loving my job, but still counting down til I got to get home to my family. As I do everyday. My phone rang and I saw the 585 area code. I recognized the number as Gracie's neurologist, and knew immediately that she was calling about the testing that Grace had done at the beginning of this year. She is honestly one of my favorite people, so I look forward to our monthly phone conversations. She also agrees wholeheartedly with me about trying every non medicine intervention before going to medicine, so it makes it easier to get along with her.
We chitchatted for a few minutes, as always. She wanted to know all about kindergarten and Sunday School. She asked how John and Josiah were. She asked me what color my hair is--- I had mentioned I was coloring my hair the last time we spoke, and she remembered. See why I like her? Then she took a deep breath and I knew it was coming. THE HARD STUFF.
Grace had an IQ test back in the summer. The results were used to help get her into her class at school, so I knew they weren't great. Dr. Hughes said that for a child with Gracie's history and extent of brain damage, they would EXPECT a score of between 10 and 15. Grace scored in the low 70's. Isn't that amazing? It's awesome!! However, average is around 100. SOOO...I had to hear a word that I hate. I had a whole post about it not so long ago. "Grace is considered functionally mentally retarded." I wanted to scream. I wanted to tell her how crazy she was, that those test scores mean nothing. I wanted to tell her that my daughter can hold her own in a conversation with adults, she has a huge vocabulary, and she can remember the words to songs after hearing them once. I wanted to cry...and I did. I walked outside and around the corner, sat down in the grass, and I cried. Then I regained my composure, went back inside and thought about what she had said.
"She should be on the other end of the scale."
"There is no logical or medical reason why Grace functions so well with so little working brain."
"She's doing awesome. Her score went up 23 points in a year."
That word that I hate? It's just a word. It doesn't mean anything. Just like when autism got thrown at us, I have to realize that these diagnoses are just terms used to describe what we already know. What we do with them is what matters. I could throw in the towel and give in it. Or I can look at the bright side...She's smart as can be, but it's almost impossible to test her. She's way above and beyond whats to be expected of her!! She's gained over 20 points in one year!!
So that's where we are today...same girly as always. Mommy is just struggling with the hard stuff.
We chitchatted for a few minutes, as always. She wanted to know all about kindergarten and Sunday School. She asked how John and Josiah were. She asked me what color my hair is--- I had mentioned I was coloring my hair the last time we spoke, and she remembered. See why I like her? Then she took a deep breath and I knew it was coming. THE HARD STUFF.
Grace had an IQ test back in the summer. The results were used to help get her into her class at school, so I knew they weren't great. Dr. Hughes said that for a child with Gracie's history and extent of brain damage, they would EXPECT a score of between 10 and 15. Grace scored in the low 70's. Isn't that amazing? It's awesome!! However, average is around 100. SOOO...I had to hear a word that I hate. I had a whole post about it not so long ago. "Grace is considered functionally mentally retarded." I wanted to scream. I wanted to tell her how crazy she was, that those test scores mean nothing. I wanted to tell her that my daughter can hold her own in a conversation with adults, she has a huge vocabulary, and she can remember the words to songs after hearing them once. I wanted to cry...and I did. I walked outside and around the corner, sat down in the grass, and I cried. Then I regained my composure, went back inside and thought about what she had said.
"She should be on the other end of the scale."
"There is no logical or medical reason why Grace functions so well with so little working brain."
"She's doing awesome. Her score went up 23 points in a year."
That word that I hate? It's just a word. It doesn't mean anything. Just like when autism got thrown at us, I have to realize that these diagnoses are just terms used to describe what we already know. What we do with them is what matters. I could throw in the towel and give in it. Or I can look at the bright side...She's smart as can be, but it's almost impossible to test her. She's way above and beyond whats to be expected of her!! She's gained over 20 points in one year!!
So that's where we are today...same girly as always. Mommy is just struggling with the hard stuff.
Sunday, August 28, 2011
Moments in time...
Gracie's 5th birthday is VERY quickly approaching! Last night we were sitting in her room, chitchatting with the lights off. I asked her what kind of cake she wanted for her birthday party and who she would like to invite. She said she wanted a big cookie, "like the one you made for Chad, my mommy." Which I found especially funny, because she only heard about that cookie, it got eaten before the kids got a piece. She wants me to decorate it like Mickey Mouse...guess I should have taken the cake decorating class at church last month!!
Anyway, then I asked who would like to invite. She said only one name, a child from her class at school. He has hydrocephalus like Gracie, but he doesn't talk and uses a wheelchair. He's also one of our absolute favorite little people in the world. I told her that we would definitely invite him, and she clapped her hands and did her special Gracie laugh. Then she got really quiet and said " He doesn't get to play with all of the other kids. Like I didn't used to. But he's my best friend because I love him. Except for brudder." (Then she pushed Josiah off the bed, but we'll pretend it was a completely sweet moment!!!)
It's moments like those that make my heart swell with love. Love for my baby girl, and love for my Jesus. Whom I have not given as much praise and glory and attention as I should lately. HE and HE alone took such a devastating experience as a childhood stroke and is turning it into something good. He's opening a 4 year old heart up to see the world and people the way they really should be seen. To treat people the same, no matter what. To have compassion....
Anyway, then I asked who would like to invite. She said only one name, a child from her class at school. He has hydrocephalus like Gracie, but he doesn't talk and uses a wheelchair. He's also one of our absolute favorite little people in the world. I told her that we would definitely invite him, and she clapped her hands and did her special Gracie laugh. Then she got really quiet and said " He doesn't get to play with all of the other kids. Like I didn't used to. But he's my best friend because I love him. Except for brudder." (Then she pushed Josiah off the bed, but we'll pretend it was a completely sweet moment!!!)
It's moments like those that make my heart swell with love. Love for my baby girl, and love for my Jesus. Whom I have not given as much praise and glory and attention as I should lately. HE and HE alone took such a devastating experience as a childhood stroke and is turning it into something good. He's opening a 4 year old heart up to see the world and people the way they really should be seen. To treat people the same, no matter what. To have compassion....
Wednesday, August 17, 2011
The "special" teacher
Gracie graduated from Pre- K today. Wow, what an amazing accomplishment from the little girl who wasn't supposed to even leave the hospital in 2009. I was sitting here tonight, thinking of all that she has done and learned this year, and it brought tears to my eyes.
A year ago, Grace had her final PT/OT session with the girl who came to our house. Gracie absolutely loved her. She loved their play time. I remember one day they were trying to learn to use scissors, and Grace scared the living daylights out of everyone. Yesterday, her occupational therapist told me that scissors were pretty much "mastered." Mastery of a skill....alot of parents probably don't even notice things like using scissors. To us, it's huge. So, to all of the occupational therapists out there...thank you.
Last September, we went to parent teacher night at her school. Part of that included "open gym"- which meant that the physical therapy rooms were open. Grace fell about 500 times that night, and could not even keep herself upright on the therapy ball. Today, she bounces across the room on it like Tigger. So, to all of the physical therapists out there...thank you.
At the beginning of the school year, Grace still aspirated pretty regularly. She asked everyone, "What's your name?" Her h's were p's. Her name was Dace. Today, she very rarely ever chokes, much less aspirates. Our cat now hisses at her...and that sure does sound better than what she used to say. Her name is not only Grace, but it's G-R-A-C-E. Spelled out. So, to all of the speech therapists out there...thank you.
A year ago, Grace could not sit still for a minute. She couldn't remember anything past Twinkle, twinkle little star. She had a hard time fitting in with other kids, because she didn't understand like they did. She wouldn't sit still even for half of a story. She didn't know her ABC's, colors, numbers, animals, etc. Today, she knows and does all of these things.
A special education teacher is a very SPECIAL teacher indeed. Every day, that person CHOOSES to go to a classroom with kids that are "different". Some of them hit. Bite. Some are non verbal and that teacher can never be quite sure what they are getting...or not getting. Almost all of them have the energy of 24 "normal" kids. That teacher loves those kids though, loves that job, that CALLING- and does it day in and day out. And the kids learn. They are like sponges, and before long, parents like us are amazed at the things their children know. AND so, to all of the special education teachers out there...thank you. What you do is important. What you do matters, forever. What you do changes lives.
Happy pre-K graduation, girly-bug. We are so very proud of you!!
A year ago, Grace had her final PT/OT session with the girl who came to our house. Gracie absolutely loved her. She loved their play time. I remember one day they were trying to learn to use scissors, and Grace scared the living daylights out of everyone. Yesterday, her occupational therapist told me that scissors were pretty much "mastered." Mastery of a skill....alot of parents probably don't even notice things like using scissors. To us, it's huge. So, to all of the occupational therapists out there...thank you.
Last September, we went to parent teacher night at her school. Part of that included "open gym"- which meant that the physical therapy rooms were open. Grace fell about 500 times that night, and could not even keep herself upright on the therapy ball. Today, she bounces across the room on it like Tigger. So, to all of the physical therapists out there...thank you.
At the beginning of the school year, Grace still aspirated pretty regularly. She asked everyone, "What's your name?" Her h's were p's. Her name was Dace. Today, she very rarely ever chokes, much less aspirates. Our cat now hisses at her...and that sure does sound better than what she used to say. Her name is not only Grace, but it's G-R-A-C-E. Spelled out. So, to all of the speech therapists out there...thank you.
A year ago, Grace could not sit still for a minute. She couldn't remember anything past Twinkle, twinkle little star. She had a hard time fitting in with other kids, because she didn't understand like they did. She wouldn't sit still even for half of a story. She didn't know her ABC's, colors, numbers, animals, etc. Today, she knows and does all of these things.
A special education teacher is a very SPECIAL teacher indeed. Every day, that person CHOOSES to go to a classroom with kids that are "different". Some of them hit. Bite. Some are non verbal and that teacher can never be quite sure what they are getting...or not getting. Almost all of them have the energy of 24 "normal" kids. That teacher loves those kids though, loves that job, that CALLING- and does it day in and day out. And the kids learn. They are like sponges, and before long, parents like us are amazed at the things their children know. AND so, to all of the special education teachers out there...thank you. What you do is important. What you do matters, forever. What you do changes lives.
Monday, July 25, 2011
Neurology appointments, ASD, and kindergarten bus assignments....
This past week was busy!!! On Tuesday morning, Gracie woke up with a fever of 104.9. Of course, this also happened on the HOTTEST day of the year. Temperatures rose to 101 with a heat index of 108 (from what I heard). I am a self proclaimed sun worshipper. I love the heat. It's funny how things like seizure disorders can change a persons outlook on something. I still love the sun, but on those hot, hot, HOT days, we pretty much stay inside now. Back to the fever though....any temperature over 101 warrants a pediatrician visit with Grace. So, we went to see her doctor and came straight back. Her throat was bright red, but the rapid strep came out negative. Dr. Roessler was quite sure she had an enterovirus--- the only thing that worried him was the increased chance of seizure activity. We went home and Grace had her tylenol and fell asleep on the couch. Her fever came down a bit too quickly, because she seized in her sleep. It is so scary to watch a child seize. This time, we were able to wake her up within about a minute and she pulled herself out of it. She was very post-ictal for a about an hour or two, and then she started to perk up. A call to her neurologist left us needing to go to Wegmans to pick up an emergency drug for the duration of the illness. It's called Klonopin, and it's one drug that I hate the very idea of giving to her. There are tons of side effects from it...and it just doesn't sit right with me that people pay $5 a pill for the stuff. HOWEVER, sometimes the good has to outweigh the bad, and it did control those seizures. She had another seizure at Wegmans, but again, she pulled herself out of it without any rescue drugs. Thank God.
We already had a neurology check up scheduled for Friday, so we kept that appointment. While we were there, we discussed these seizures- but also other behaviors that we see. Her neurologist said that Grace is hyper focused on some areas- to the point that distracting her is not just hard, but might be literally impossible. There are things that just bother her so much that her brain gets stuck on them and just does a loopdeloop, right back to it. It's hard to explain in words. For example, she recently saw a cartoon with a child that had to go to the hospital. She will ask about that show at all hours of the day, almost as though she is just fixated on it. Some behaviors that the doctor saw herself and others that we described caused her to officially place Grace on the Autism spectrum. It's quite typical for kids with TBI's to show these symptoms, and while it puts her on the charts, it does not mean she is "autistic". These are behaviors that can get better or worse over time, and we just have to watch and wait! What does all this mean to us? Pretty much nothing, LOL. She's the same Grace we walked into that appointment with!!
That afternoon when we got home, I got the mail and in it I found this-
Oh boy, did the tears ever flow!!!
We already had a neurology check up scheduled for Friday, so we kept that appointment. While we were there, we discussed these seizures- but also other behaviors that we see. Her neurologist said that Grace is hyper focused on some areas- to the point that distracting her is not just hard, but might be literally impossible. There are things that just bother her so much that her brain gets stuck on them and just does a loopdeloop, right back to it. It's hard to explain in words. For example, she recently saw a cartoon with a child that had to go to the hospital. She will ask about that show at all hours of the day, almost as though she is just fixated on it. Some behaviors that the doctor saw herself and others that we described caused her to officially place Grace on the Autism spectrum. It's quite typical for kids with TBI's to show these symptoms, and while it puts her on the charts, it does not mean she is "autistic". These are behaviors that can get better or worse over time, and we just have to watch and wait! What does all this mean to us? Pretty much nothing, LOL. She's the same Grace we walked into that appointment with!!
That afternoon when we got home, I got the mail and in it I found this-
Oh boy, did the tears ever flow!!!
Saturday, July 2, 2011
Kindergarten
I'm very happy to report that Gracie has been accepted into the special needs 12:1:1 kindergarten class!! This has been a HUGE concern and now a HUGE burden off of my shoulders. As I have previously blogged, I had always planned to homeschool. After the stroke, I knew I would end up having to send her to school for therapy. It broke my heart, absolutely broke it.. Then she not only showed tons of progress, but she just blossomed!! My girl adores school. As a matter of fact, short of a week break this week, she will attend ALL summer long!!
I started to get nervous about kindergarten back in February/March. The district we were living in has very minimal special needs programs. Although Gracie has done above and beyond what any doctor or teacher ever expected, she does still need special help and a careful eye. She still falls a lot, and she still loves to take off and just run when she gets bored. ADHD at it's bests? Nope just a stinking traumatic brain injury. We recently moved back into the district I went to school in ( all those years ago in the Ice Age, LOL)-- and luckily it is bigger and has more funding. We moved late though, and so the CPSE ( Chair person for Special Education) wasn't sure of she'd be able to get Gracie in to the 12:1:1. Which is what she needs--- the special attention on a small class, with an emphasis on continuing to get all of her therapy and learning to play well with others. Gracie still plays by herself more than with other kids. Recently, she has begun to sit near other kids while she plays, and that's a huge step in the right direction. She gravitates to younger children and babies though, or she just sits all by herself to play with something. No interaction with the other kids near her.
Anyway, I got a phone call this week to tell me she was accepted. I'm so excited for her to get the type of education that she needs....also a little sad to see her go off for 7 hours a day....
I started to get nervous about kindergarten back in February/March. The district we were living in has very minimal special needs programs. Although Gracie has done above and beyond what any doctor or teacher ever expected, she does still need special help and a careful eye. She still falls a lot, and she still loves to take off and just run when she gets bored. ADHD at it's bests? Nope just a stinking traumatic brain injury. We recently moved back into the district I went to school in ( all those years ago in the Ice Age, LOL)-- and luckily it is bigger and has more funding. We moved late though, and so the CPSE ( Chair person for Special Education) wasn't sure of she'd be able to get Gracie in to the 12:1:1. Which is what she needs--- the special attention on a small class, with an emphasis on continuing to get all of her therapy and learning to play well with others. Gracie still plays by herself more than with other kids. Recently, she has begun to sit near other kids while she plays, and that's a huge step in the right direction. She gravitates to younger children and babies though, or she just sits all by herself to play with something. No interaction with the other kids near her.
Anyway, I got a phone call this week to tell me she was accepted. I'm so excited for her to get the type of education that she needs....also a little sad to see her go off for 7 hours a day....
Thursday, May 12, 2011
Sticks and stones...
I can not stand what PEOPLE have done with the English language. I can NOT stand the way words are taken, given a new meaning or a negative connotation and then used to hurt others. I simply can not stand it.
You know that old saying, we all know it, we have all said it at some point, I'm sure!! " Sticks and stones may break my bones, but words can never hurt me!" Usually said in a sing song voice, often by a child who then leaves the room to cry. What does God say about our words?
Proverbs 18:21 " Death and life are in the power of the tongue:"
Luke 6:45- " A good man out of the good treasure of his heart bringeth forth that which is good; and an evil man out of the evil treasure of his heart bringeth forth that which is evil: for of the abundance of the heart his mouth speaketh."
Our words do hurt people, even those who seemingly don't understand. Three weeks ago, Gracie was called a retard. She didn't even hear it, and even if she had, she doesn't know what the word means. I know though. I knew what that child was implying about my little girl. It's in these times that as a parent, we have to just take it in and make it our secret hurt. My flesh wanted to take that child aside and give a little lesson on what the word means. My flesh wanted to find the child's parents and ask them why in the world their child is saying such hateful words!! Thankfully, this was one time that I could not let that flesh win, so I just took it. I realized last night though, that those words were sitting right on top of my heart. I didn't take Gracie back to the class that it happened in for three weeks. That's how the words hurt her. Though she had no idea what was said, she missed out on one of her favorite times of the week three times. In reality, that's MY failure, I know. I'm not mad at that child or the child's parents...just myself and the devil. Me for letting him get to me. And him, just because I hate him!!!
Recently, I posted this on Facebook- "
Oh and by the way, the word retard is a verb...
Sunday, May 8, 2011
Ladies Tea
Yesterday, we had the 1st Lighthouse Baptist Church Ladies Tea!! What a BUSY, fun day!! It started early, at around 4:30 am. Saturday's is bus visiting day, and I TRY to get up early and pray for all of our kids and workers on Saturday mornings. Then, we headed to the church for an extremely quick meeting and off we went. The tea was to begin at 1pm, so at 12 noon we had to wrap things up and head home. We got gussied up (as good as it gets in an hour) and off we went.
We arrived right on time and got our corsages. Gracie's promptly fell apart, LOL. She has inherited mommy's allergies, so that was probably for the best, anyway. The church looked absolutely beautiful. Some of the ladies lent out their tea cups and saucers and other antique items.
We were served a very yummy lunch, which Gracie enjoyed much more than I had expected. Actually, she really enjoyed the melon and croissants, but hey, that's something!!
We then went upstairs for the wonderful teaching portion. Gracie didn't sit completely still the whole time, but neither did I!! Halfway through, she turned and asked me if Josiah was sick. I told her no and tried to explain to her quietly that he stayed home because it was just for ladies. She said "brudder usually comes to church with me though." About 10 minutes later, we were praying and she was fiddling around, so I told her to bow her head to pray. The next thing I know I heard: "Jesus, help brudder get better so he can come with me to church. Amen." No matter what you accomplish in life Grace, if you keep that loving heart, Mommy and Daddy will always be SO proud of you.
She didn't want to turn and look at me, but I just love the old fashioned effect of this picture!!
Dessert was yummy! Gracie tried the one with the green and cracked me up. It was mint, something her taste buds are just not ready for yet! However it was yummy to my adult taste buds....they all were. Hmmm, Weight Watchers meeting on Tuesday evening anyone?
After dessert, numbers were called and the winners got to take home one of the tea cups and saucers with a potted plant. Gracie was so excited when her number was called. However, she decided to give her prize to Miss Bea. Here they are together.
I might be biased, but isn't she beautiful?? (Both of them!)
Mrs. Hack gave Gracie another flower to give to her mommy. ***Life lesson 427- Always think of others when it comes to gifts. Mommy has much much more than she needs.
The theme was Precious Memories, and oh how precious every little memory is!!
Saturday, May 7, 2011
Opening the prison doors
That theater has been my own personal prison. Two years ago, I made the choice to go in there and shut myself in and not come out again. It's somewhat safe in here. I get to choose who comes in with me, I get to kick people out as I please. If the conversation turns to something I don't want to hear (like the word die), I can put my hands over my ears and chant "I can't hear you" over and over. This is my theater. It's comfortable here too. The seats are cushy, the programming is great (it revolves around my kiddo's-what's better?), and I even brought God in here with me. WHY LEAVE??
Somehow, recently, my good friend anxiety allowed the panic to start setting in again. It's been small doses, comparatively. My comfort level has been significantly diminished though. This time, I have seeked out some Godly counsel (novel idea, huh?). I embarrassed myself in front of about 50 of my closest friends a week and 1/2 ago- and decided right then, THIS MUST STOP. My mom is leaving for Florida in a week. I should be going with her. I love Florida. My kids love Florida. They love my Grandpa, and he's not getting younger. Gracie talks about my aunts that live down there like she sees them everyday. I want to go. Why am I not? Are you ready for the most RATIONAL thought I've ever had? There's something about going to Florida that makes Gracie sick. We had come home from Florida about 2 weeks before the stroke, and then we had JUST come home from Florida when she had the huge seizure last year. I know, I know....my thinking is about as illogical as it gets. I KNOW this, I just can't get past the fear.
Somehow, recently, my good friend anxiety allowed the panic to start setting in again. It's been small doses, comparatively. My comfort level has been significantly diminished though. This time, I have seeked out some Godly counsel (novel idea, huh?). I embarrassed myself in front of about 50 of my closest friends a week and 1/2 ago- and decided right then, THIS MUST STOP. My mom is leaving for Florida in a week. I should be going with her. I love Florida. My kids love Florida. They love my Grandpa, and he's not getting younger. Gracie talks about my aunts that live down there like she sees them everyday. I want to go. Why am I not? Are you ready for the most RATIONAL thought I've ever had? There's something about going to Florida that makes Gracie sick. We had come home from Florida about 2 weeks before the stroke, and then we had JUST come home from Florida when she had the huge seizure last year. I know, I know....my thinking is about as illogical as it gets. I KNOW this, I just can't get past the fear.
So, you've read this far and you're probably wondering why in the world I felt the need to blog about this! Well, first of all- I am a writer. This is what I do. I love to talk, but when it comes right down to it, I would much rather write my feelings down than talk about them. Second, as I said before, I embarrassed myself in front of about 50 close friends a couple of weeks ago. What happened? Our church has a new outreach program called the Great Commission. The idea is to board one of the church buses and drive to a neighboring town and basically blitz the whole thing with tracts, witnessing and soul winning as the opportunity arises. I was SO excited for the first one. The church was supplying a nursery and everything. I packed the kids a snack, went to the church, and dropped them off in the nursery. I got on the bus, still excited as can be. By the way, I'm a bus worker.
I ride the bus.
Every week.
With lots of kids.
They're loud.
Sometimes, they stink.
I LOVE IT.
So, being on the bus was not going to be a problem for me. I got on, sat down, and suddenly couldn't breathe. I felt my chest tightening and feet burning, and thought "Are you kidding me?" I had to get off the bus, right then and there. I knew immediately what the problem was- I had no way to get back to that church if anything happened. we would be half an hour away, ON A BUS. I was fine just as soon as I was back in control of the situation, driving the car behind the bus. Not before I hyperventilated and about clotheslines our Pastor and associate pastor trying to get off it.
So, those are reasons one and two. Reason three? I'm not the only person that anxiety and panic happens to!! Believe me, I am in no way an expert on how to get rid of these things, but I thought I could share what has worked and is working for me.
1. I know I made light of this earlier, but it is no light thing. It's the most important thing in the world. Check your salvation. I'm not for making anyone doubt there relationship with Jesus, but please do know that you know that you know that you're saved.
2. Keep busy, but don't over extend yourself. I think this should just be a rule of thumb, but we all do it. Today was a big day for the ladies of our church, we had our very first Ladies Tea. We are also right in the middle of our HUGE spring bus program. I am involved in the bus ministry, I have personal stuff going on, I am now working a per diem job, and of course, I have my family. I made a conscious choice NOT to help with the tea, instead to just enjoy the day with my mom and daughter. Would I have liked to help? Of course!! However, there just wasn't the time or energy for me to do so.
3.Get enough sleep and exercise. I'm not going to say an exact number of hours of sleep, everyone is different. For me, I need around 6 hours at night to function completely normally. A tired brain is an over reactive brain.
4. Pray, praise and sing. It might sound cliche, but it works.
5. Know your triggers!! Obviously, my goal is to be "normal", but in the meantime, I'm not going to purposely put myself in situations I know will start my panic. Slowly work your way back to your "normal".
6. Arm yourself with the Word of God. I'm all for Bible memorization, but in this case, I am going to suggest finding one verse that fits you and helps you. Memorize it. Write it down and carry it in your purse, put it on your dashboard, etc. Using just one or two verses over and over is not only comforting, but it also helps keep you from becoming overwhelmed. My verses are Isaiah 54:7, 8 "For a small moment have I forsaken thee; but with great mercies will I gather thee. In a little wrath I hid my face from thee for a moment; but with everlasting kindness will I have mercy on thee, saith the LORD thy Redeemer." and Psalm 27:13, 14
"I had fainted, unless I had believed to see the goodness of the LORD in the land of the living.
Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD."
"I had fainted, unless I had believed to see the goodness of the LORD in the land of the living.
Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD."
I will conclude with that, but I will update on how I'm doing with my anxiety. Thanks to all who take the time to read this, and especially pray for us. I love you all!
.Pitch black
In July of 2009, life came barreling at me full force like a locomotive out of control. One of my very favorite songs goes, "My life Lord, is Yours to control." Well, as a joke, I started to sing "My life Lord, is out of control." Things were happening left and right, and I truly had no control over any of it. I am a self confessed CONTROL freak! Unfortunately, the panic attacks came back during this time. They came back with a vengeance. I had the very worst one to date in the summer of 2009. I was sitting in my parents living room, nursing 5 month old Josiah. Suddenly, my ears began to ring and my arms felt like they were on fire. I had no idea what was going on, it felt like a heart attack.I yelled for my mom to come get him, and I tried to go outside. Before long, I was completely hyperventilating. My head hurt so bad I thought I might be having a stroke, yet my chest was so tight I knew for sure I was having a heart attack. My mom called 911, and when the ambulance got there, the men thought I was having a drug overdose!! They kept asking me what I had taken and I kept telling them just some Tylenol. Then I couldn't get into the ambulance, the thought of being stuck in there almost killed me. That's when one of the men took someone aside and said " I think she might be having a panic attack. She needs to go get checked out though." Sure enough, that's what it was. I did go to the hospital, and they suggested a slew of drugs. I politely declined, although I did take the Benadryl, seeing as I was itching so bad that I was quite afraid I might be left with no skin!!
The panic attacks once again followed the same pattern. That one was the worst of the worst, and then slowly but surely they settled down again. Strangely enough, I had only one true panic attack after Gracie's stroke. It was three days later, and the neurosurgeon had come in and told me she would be having the shunt replaced within the next couple of days. I had not yet left the hospital. My mom told me to go over to the RMH, play with Josiah and take a little nap. I did just that, and I fell sound asleep nursing him. When I woke up, he was twitching beside me. Just a little infant spasm. I immediately thought he was having a seizure and then I was immediately and completely convinced that I had rolled on him (even though I woke up a good 2 feet away on the bed). I can remember picking up the phone and calling my mom at the hospital, screaming and crying. By this time, Josiah was completely awake and perfectly fine. It had finally hit me though, that my baby girl had had a stroke. That she was lying in a hospital room, hooked to every machine imaginable, in a coma. She had to be on top of a pretty much freezing cold blanket, and yet she was still burning to the touch. The truth of the situation hit me like rough waves of the sea, and I fell on my knees and wailed like an animal. I had no choice but to just force myself to regain my composure and go back to the hospital, I had Josiah. So, that's what I did. I swept the gigantic purple elephant in my life back under the rug and went back to the hospital.
The panic attacks actually got better after that though. I realize now, it's because instead of a once in a while burst of panic, I became generally anxious all the time. Anyone who has followed this blog knows the struggles I had after Gracie came home. Yes, my fears were normal and somewhat justified (in our human minds)- BUT they are just that...FEARS. Fears that should have been dealt with inside of me. I've been living this past year and a half in a world separate from everyone else. Oh, I do my best to be happy and joyful, and most of the time my happiness is real. I still live in my own little shell of a world though, that world where in my quiet moments I sit and wonder when the other shoe is going to drop. It's like living inside a darkened theater. When a person first walks in, she stumbles to find a seat. It seems PITCH BLACK. Before long though, our eyes adjust to the darkness, and it seems normal. Well, somewhere along the way, I adjusted to this darkness inside me, and it began to just feel normal. Every so often though, someone will come in or out of the theater, and the light will stream in. In those moments, I'm reminded that I'm still in here, with the lights turned dim, hiding away in my little theater.
To be concluded....
The panic attacks once again followed the same pattern. That one was the worst of the worst, and then slowly but surely they settled down again. Strangely enough, I had only one true panic attack after Gracie's stroke. It was three days later, and the neurosurgeon had come in and told me she would be having the shunt replaced within the next couple of days. I had not yet left the hospital. My mom told me to go over to the RMH, play with Josiah and take a little nap. I did just that, and I fell sound asleep nursing him. When I woke up, he was twitching beside me. Just a little infant spasm. I immediately thought he was having a seizure and then I was immediately and completely convinced that I had rolled on him (even though I woke up a good 2 feet away on the bed). I can remember picking up the phone and calling my mom at the hospital, screaming and crying. By this time, Josiah was completely awake and perfectly fine. It had finally hit me though, that my baby girl had had a stroke. That she was lying in a hospital room, hooked to every machine imaginable, in a coma. She had to be on top of a pretty much freezing cold blanket, and yet she was still burning to the touch. The truth of the situation hit me like rough waves of the sea, and I fell on my knees and wailed like an animal. I had no choice but to just force myself to regain my composure and go back to the hospital, I had Josiah. So, that's what I did. I swept the gigantic purple elephant in my life back under the rug and went back to the hospital.
The panic attacks actually got better after that though. I realize now, it's because instead of a once in a while burst of panic, I became generally anxious all the time. Anyone who has followed this blog knows the struggles I had after Gracie came home. Yes, my fears were normal and somewhat justified (in our human minds)- BUT they are just that...FEARS. Fears that should have been dealt with inside of me. I've been living this past year and a half in a world separate from everyone else. Oh, I do my best to be happy and joyful, and most of the time my happiness is real. I still live in my own little shell of a world though, that world where in my quiet moments I sit and wonder when the other shoe is going to drop. It's like living inside a darkened theater. When a person first walks in, she stumbles to find a seat. It seems PITCH BLACK. Before long though, our eyes adjust to the darkness, and it seems normal. Well, somewhere along the way, I adjusted to this darkness inside me, and it began to just feel normal. Every so often though, someone will come in or out of the theater, and the light will stream in. In those moments, I'm reminded that I'm still in here, with the lights turned dim, hiding away in my little theater.
To be concluded....
Friday, May 6, 2011
When darkness falls, part 2
That night in the parking lot, I had my first of many panic attacks. Now, some of you might be laughing right now. Some of you might think that panic attacks are just a weakness. I've heard it all. "You had better pray more." "Check your salvation." ( Like the song says, I was there when it happened, I ought to know.) My favorite one ever- " Jesus lives inside you, you're making him have a panic attack right along with you. " Thanks. Now I have panic attacks and major guilt. LOL. During this time, darkness really fell on me. It was like a black cloud that just hung over me. I tried everything I could to get rid of that overwhelming sense of complete helplessness and hopelessness. I read the Bible, (I actually read the entire Bible out loud to Gracie by the time she was 3 months old, LOL) I read other good books, I prayed, I cried. I didn't talk much about it though. I never allowed myself to think about all of the possibilities. I kept up appearances too. I always knew that people would visit us at the NICU on Saturday's, so I would make sure and brush my hair and teeth and get out of my pajamas that day. I will never forget the day our Pastor's wife came to visit me on a Tuesday evening. She is a busy mom, and that was the only day she had that week. She walked in, took one look at me and said, "You ARE human!!" I was in a ratty old jean skirt, my college sweatshirt that has seen many better days, my hair was thrown in a pony tail, and worse of all- I had been crying. Over the past 2 years, I've gotten much better about crying in front of people, but I HATE to do it. Hate it!! When I cry, the whole world knows. My eyes get red, my nose is like a clowns, and I make the most awful noises.
So, it was in those days that the panic attacks started. We had to leave the hospital every night. I would walk around the house, trying to find something to do, trying to make an hour pass so I could call and check on her. As days went by, I would let 2 hours go. We worked our way to three hours by time she was about 8 weeks old. Sometimes, in the middle of the night, I would call and the phone would just ring and ring. The nurses do the "busy work" at night, weighing the babies, giving baths, etc. I knew this, but again, rational thought did not exist at that point. I immediately thought that there was something wrong with MY baby. They knew it was me on the phone and didn't want to tell me. Crazy right? My heart would start to beat like crazy. So hard I could hear it. Then my legs would start to tingle and before long actually burn. Next would start the itching. My whole body would itch to the point where I would scratch and make myself bleed. This would continue until I could finally get in contact with someone at the NICU. This continued for the months she was in the hospital. Then, like a magic wand was waved over me, Grace came home and my panic attacks stopped. Just like that.
To be continued...again!
So, it was in those days that the panic attacks started. We had to leave the hospital every night. I would walk around the house, trying to find something to do, trying to make an hour pass so I could call and check on her. As days went by, I would let 2 hours go. We worked our way to three hours by time she was about 8 weeks old. Sometimes, in the middle of the night, I would call and the phone would just ring and ring. The nurses do the "busy work" at night, weighing the babies, giving baths, etc. I knew this, but again, rational thought did not exist at that point. I immediately thought that there was something wrong with MY baby. They knew it was me on the phone and didn't want to tell me. Crazy right? My heart would start to beat like crazy. So hard I could hear it. Then my legs would start to tingle and before long actually burn. Next would start the itching. My whole body would itch to the point where I would scratch and make myself bleed. This would continue until I could finally get in contact with someone at the NICU. This continued for the months she was in the hospital. Then, like a magic wand was waved over me, Grace came home and my panic attacks stopped. Just like that.
To be continued...again!
Thursday, May 5, 2011
When darkness falls
I've never been one that was afraid of the dark. I can remember packing two or three face masks with me when I left for my first year of college. Every night, I would turn off every light I could, put a face mask on, put my little satchel of lavender junk over the face mask and go to sleep.
When John and I first married, we would have many late night "quarrels" over darkness. He would get up to get a drink, go to the bathroom, or eat a bowl of cereal at 3 am (who does that?)- and LEAVE the lights ON. I'm talking the hall light, the dining room light, the kitchen light. He could be as quiet as a mouse and yet still wake me up because of all the bright lights! He'd come back in our room and I'd remind him to turn off the lights and he'd always say" but I'm already back in bed!." It became a little joke with us...."John can sleep on a dime, Michelle needs the home sublime."
Then came Gracie. I was in the hospital with her for three nights, because I had a rough birth, they made me stay that extra night. Then the most unnatural thing in the world happened- we went home and left our beautiful baby behind. I can remember walking in the door that first night, and walking around our tiny upstairs apartment. The first thing I did was gather all of the phones we owned and put them on the stand in front of me. I was not allowed to sleep in my own bed for two weeks, because they didn't want me rolling. So, to the couch I went, feet propped up and the house phone, my cell phone, and John's cell phone right in front of me. John would sleep in the uncomfortable chair or on the floor in front of me, just to be in the same room. That first night, I got as comfortable on the couch as I could and John walked through the house and turned lights off. He got to the last lamp, at the end of my feet, and I started to hyperventilate. I mean, full out, breathe in a paper bag, hyperventilate. "Turn it back on, turn it back on!!" I cried/yelled to John. He turned it on and sat down on the couch with me. I curled up next to him, and fell asleep crying, clutching the phone in my hand. Thus began my fear of the dark. From that night forward, I have slept with some sort of light on. It doesn't need to be a bright light, or even a night light....just some kind of light. Darkness fell on me in that moment, and I allowed it to have it's very grip on me for quite some time. I remember the very moment that I realized I was in his power. We had left Gracie for the evening nursing switch, and I couldn't find my parents. (We sold our car 2 days before she was born. We had planned to buy a new one, but then we just didn't have the time.) They were going to take us home. I called my mom's cell, and she didn't answer. I was sure that something had happened, the nurses couldn't get through to my cell, and so they had called my mom. Completely irrational thinking, I realize. I stood there in that parking lot and BEAT on my poor husband. Just like something you see in a movie. He stood there and took it, and when I finally got it all out, he held me tight as I cried and cried. Then we saw the lights of the car, coming toward us- I looked up and felt blinded. I'd like to say I won a victory in that moment, but I did not. My daughter's entire NICU stay was one struggle after another, and many times, I allowed the darkness to win in my heart.
To be continued....
When John and I first married, we would have many late night "quarrels" over darkness. He would get up to get a drink, go to the bathroom, or eat a bowl of cereal at 3 am (who does that?)- and LEAVE the lights ON. I'm talking the hall light, the dining room light, the kitchen light. He could be as quiet as a mouse and yet still wake me up because of all the bright lights! He'd come back in our room and I'd remind him to turn off the lights and he'd always say" but I'm already back in bed!." It became a little joke with us...."John can sleep on a dime, Michelle needs the home sublime."
Then came Gracie. I was in the hospital with her for three nights, because I had a rough birth, they made me stay that extra night. Then the most unnatural thing in the world happened- we went home and left our beautiful baby behind. I can remember walking in the door that first night, and walking around our tiny upstairs apartment. The first thing I did was gather all of the phones we owned and put them on the stand in front of me. I was not allowed to sleep in my own bed for two weeks, because they didn't want me rolling. So, to the couch I went, feet propped up and the house phone, my cell phone, and John's cell phone right in front of me. John would sleep in the uncomfortable chair or on the floor in front of me, just to be in the same room. That first night, I got as comfortable on the couch as I could and John walked through the house and turned lights off. He got to the last lamp, at the end of my feet, and I started to hyperventilate. I mean, full out, breathe in a paper bag, hyperventilate. "Turn it back on, turn it back on!!" I cried/yelled to John. He turned it on and sat down on the couch with me. I curled up next to him, and fell asleep crying, clutching the phone in my hand. Thus began my fear of the dark. From that night forward, I have slept with some sort of light on. It doesn't need to be a bright light, or even a night light....just some kind of light. Darkness fell on me in that moment, and I allowed it to have it's very grip on me for quite some time. I remember the very moment that I realized I was in his power. We had left Gracie for the evening nursing switch, and I couldn't find my parents. (We sold our car 2 days before she was born. We had planned to buy a new one, but then we just didn't have the time.) They were going to take us home. I called my mom's cell, and she didn't answer. I was sure that something had happened, the nurses couldn't get through to my cell, and so they had called my mom. Completely irrational thinking, I realize. I stood there in that parking lot and BEAT on my poor husband. Just like something you see in a movie. He stood there and took it, and when I finally got it all out, he held me tight as I cried and cried. Then we saw the lights of the car, coming toward us- I looked up and felt blinded. I'd like to say I won a victory in that moment, but I did not. My daughter's entire NICU stay was one struggle after another, and many times, I allowed the darkness to win in my heart.
To be continued....
Wednesday, April 20, 2011
A letter to my children
I started this post two months ago, when my own personal health crisis was looming over me like a dark cloud. It was put on the back burned, but as I reread it, I realized the truths in it that I do want my children to see. This is the "beginning" of this post. John is writing the portion to Josiah, and I will post it when he finishes.
Dear Grace and Josiah,
Over the past few weeks and months, I have thought long and hard about the people that I personally look up to and seek advice from in my daily life. I hope that in daily conversation, I talk about these people enough that you will know the impact they have had in my life. In case I have failed in that respect, I wanted to write about a few of them on here. There will be many people that I miss, but these are the people that I LOOK TO. Some of these people, don't even know that they are in my short list of "wise counsel", because they counsel me with their daily life.
For both of you,
Your Grandma and Grandpa. Grace, we have a long running joke that you love Grandma more than me. That used to bother me. It really got my goat, girly bug! It doesn't anymore, though. It's still a running joke, but just that. Your grandma is your best friend...and I can understand that , because she is also my own. She loves you, more than anyone else (besides Mommy and Daddy, of course). Josiah, there is no denying the bond that you share with Grandpa. As a 9 month old baby, you spent more time with him than anyone, as we spent our days in the hospital with Gracie. I'm so glad that you get to have this relationship with him now, I pray that you will always be able to remember that special love the two of you have.
For Grace-
Everybody should have people that he or she looks up to, learns from, and especially that she can get Godly advice from. I hope that as you get older, you will be able to realize that Mommy does just this with these three ladies. There are so many others that I could put on here, but these three stand out for reasons I want to explain. I want you to learn to look for qualities in people, because it's not often you find it all in one person!!
She was your very first Sunday School teacher and that right there says enough. You, my dear, were a pill even before the stroke!! For the first few weeks, she had to actually carry you around with her and teach the entire lesson with you on her lap. Mommy was in the nursery a lot at that time, and I would peek through the glass to see if you were ok. She would tell me to stay on my side and "be quiet! She can hear your voice, you know!" Then, when Daddy came to check on you, I'd say "Oh she's just fine!" as though I hadn't been staring at you all morning. Far beyond being your Sunday School teacher though, she has been MY teacher. This is the first quality that I pray you will seek when you look for your "people". Someone that you can easily learn from. A long time ago, I posted about someone who is always busy, yet never too busy. I want you to look for people like that. People that seem to always have their hands full with important projects ( and by important, I mean of importance to more than just that person)-yet will drop it all to help a friend. Look for people who will keep you accountable. Accountable to yourself, your Bible, your Lord. Over the past three years, through good and very bad times, she has done this for me.
The second person I am thinking of has not been "in" our lives much at all since you've been born. However, she has had such a great impact on my life that I still look to her often. A few years back, there was a slogan WWJD. Once it blew up, it became almost a joke, but in all reality, it was a good idea. As Christians, we should stop what we're doing from day to day and just ponder... What Would Jesus Do? The second trait that I am going to tell you to look for in a "friend" or "hero" is whether that person points you to Christ. With their lips, their attitude, and their everyday life. Does he or she make you stop what you're doing and wonder what Jesus would do in the situation you are in? I have watched this lady as she has completely surrendered her life to the will of God, and her willingness has changed me. Look for that-- that the way someone lives their own life makes you want to change yourself, for the better. There is something to be said for silent strength, and that is what I am able to get from this person. This lady gave a devotion at a bridal shower while I was pregnant for you, and words she said have stuck with me for the past 5 years. By writing them here, hopefully they will stick with me forever. She said, " (Insert bride's name), (insert groom's name) will make mistakes. Love him more because of them. If you can do that one simple thing, love him more, you will be fine." I have lived for the past 5 years, trying to abide by that one simple rule. Look for people who love others. I don't mean that love the best dressed child at church...but the ones who easily will wrap her arms around the dirty bus kid. The people pictured below will never know this side of Heaven the lives they have touched. What's more important though, is the hearts they have helped change. Like ours.
The last person I will picture for you has probably taught me the most important lesson in my life. One that if we can get down, especially early on, will make our entire life happier. She has taught me how to GIVE. Over the years, she has given of herself, as she has FAITHFULLY prayed for our family. Though she can barely walk, she has spent hour upon hour upon her knees, talking to Jesus on our behalf. I want you to look for that- someone whom you KNOW has a prayer life. Someone who regularly goes to God for other people. Over the course of the last 5 years, I have learned what it means to give your all. The Bible tells the story of the widow who gave her two mites, and because it was ALL she had, she has been recorded as giving more than anyone else. Look for someone like that. Someone who gets her daily strength from the Lord, and then goes out and gives so much of herself that she has to go back the next day and the next day and the next day to get more.
Dear Grace and Josiah,
Over the past few weeks and months, I have thought long and hard about the people that I personally look up to and seek advice from in my daily life. I hope that in daily conversation, I talk about these people enough that you will know the impact they have had in my life. In case I have failed in that respect, I wanted to write about a few of them on here. There will be many people that I miss, but these are the people that I LOOK TO. Some of these people, don't even know that they are in my short list of "wise counsel", because they counsel me with their daily life.
For both of you,
Your Grandma and Grandpa. Grace, we have a long running joke that you love Grandma more than me. That used to bother me. It really got my goat, girly bug! It doesn't anymore, though. It's still a running joke, but just that. Your grandma is your best friend...and I can understand that , because she is also my own. She loves you, more than anyone else (besides Mommy and Daddy, of course). Josiah, there is no denying the bond that you share with Grandpa. As a 9 month old baby, you spent more time with him than anyone, as we spent our days in the hospital with Gracie. I'm so glad that you get to have this relationship with him now, I pray that you will always be able to remember that special love the two of you have.
Everybody should have people that he or she looks up to, learns from, and especially that she can get Godly advice from. I hope that as you get older, you will be able to realize that Mommy does just this with these three ladies. There are so many others that I could put on here, but these three stand out for reasons I want to explain. I want you to learn to look for qualities in people, because it's not often you find it all in one person!!
She was your very first Sunday School teacher and that right there says enough. You, my dear, were a pill even before the stroke!! For the first few weeks, she had to actually carry you around with her and teach the entire lesson with you on her lap. Mommy was in the nursery a lot at that time, and I would peek through the glass to see if you were ok. She would tell me to stay on my side and "be quiet! She can hear your voice, you know!" Then, when Daddy came to check on you, I'd say "Oh she's just fine!" as though I hadn't been staring at you all morning. Far beyond being your Sunday School teacher though, she has been MY teacher. This is the first quality that I pray you will seek when you look for your "people". Someone that you can easily learn from. A long time ago, I posted about someone who is always busy, yet never too busy. I want you to look for people like that. People that seem to always have their hands full with important projects ( and by important, I mean of importance to more than just that person)-yet will drop it all to help a friend. Look for people who will keep you accountable. Accountable to yourself, your Bible, your Lord. Over the past three years, through good and very bad times, she has done this for me.
The last person I will picture for you has probably taught me the most important lesson in my life. One that if we can get down, especially early on, will make our entire life happier. She has taught me how to GIVE. Over the years, she has given of herself, as she has FAITHFULLY prayed for our family. Though she can barely walk, she has spent hour upon hour upon her knees, talking to Jesus on our behalf. I want you to look for that- someone whom you KNOW has a prayer life. Someone who regularly goes to God for other people. Over the course of the last 5 years, I have learned what it means to give your all. The Bible tells the story of the widow who gave her two mites, and because it was ALL she had, she has been recorded as giving more than anyone else. Look for someone like that. Someone who gets her daily strength from the Lord, and then goes out and gives so much of herself that she has to go back the next day and the next day and the next day to get more.
Giving is NOT about money, but about love.
Monday, April 18, 2011
How we're doing
I am a bad blogger. A bad, bad blogger. It has been almost 2 months since I've posted!
Here's just a little snapshot of what's been going on-
-Grace has become addicted to Wonder Pets. And I am smiling about that. Yes, smiling. This is coming from the mom who was convinced that the TV was the devil and her kids would never watch it. I'm still on the fence about that, BUT it is huge that she can sit still and watch an episode of a cartoon. HUGE.
-She continues to do well in school, and has been approved to continue school straight through the summer. Kindergarten next fall looms over me like a huge black cloud. I had always planned to home school my kids, but I want her to get what she needs, especially for kindergarten and first grade. Unfortunately, what she needs includes a lot of individual attention and continuous physical, occupational, and speech therapy. So, it looks like she will have to go to school. It scares me. I mean if people that know exactly what is wrong with her and how injured her brain is don't always understand and have patience with her, how much harder will it be for an outsider?
- She had a seizure two weeks ago tomorrow. It was brought on by a UTI, and it was very scary. We were already in Rochester for a dental appointment, and when we arrived in the ER, they immediately treated it as shunt failure. That didn't even happen when she actually had shunt failure!! As a result, her seizure meds have been changed again. She is now on only Keppra and vitamin B6- just in higher doses. It's been almost 2 weeks since the switch, and to me, she seems happier. :)
- Josiah started big boy Sunday School! Since his tubes were placed in February, he has had a word explosion. I didn't even realize he might have been behind in speech, but now he talks all day! Love it! They continue to be the best of friends, although these days, he does like to try and tackle her.
***Please pray for Liam. He is the son of a friend, around Josiah's age. He is BaTTLING leukemia, and at this point has not walked in five days. His parents faith is strong, but they could really use our prayers.***
Here's just a little snapshot of what's been going on-
-Grace has become addicted to Wonder Pets. And I am smiling about that. Yes, smiling. This is coming from the mom who was convinced that the TV was the devil and her kids would never watch it. I'm still on the fence about that, BUT it is huge that she can sit still and watch an episode of a cartoon. HUGE.
-She continues to do well in school, and has been approved to continue school straight through the summer. Kindergarten next fall looms over me like a huge black cloud. I had always planned to home school my kids, but I want her to get what she needs, especially for kindergarten and first grade. Unfortunately, what she needs includes a lot of individual attention and continuous physical, occupational, and speech therapy. So, it looks like she will have to go to school. It scares me. I mean if people that know exactly what is wrong with her and how injured her brain is don't always understand and have patience with her, how much harder will it be for an outsider?
- She had a seizure two weeks ago tomorrow. It was brought on by a UTI, and it was very scary. We were already in Rochester for a dental appointment, and when we arrived in the ER, they immediately treated it as shunt failure. That didn't even happen when she actually had shunt failure!! As a result, her seizure meds have been changed again. She is now on only Keppra and vitamin B6- just in higher doses. It's been almost 2 weeks since the switch, and to me, she seems happier. :)
- Josiah started big boy Sunday School! Since his tubes were placed in February, he has had a word explosion. I didn't even realize he might have been behind in speech, but now he talks all day! Love it! They continue to be the best of friends, although these days, he does like to try and tackle her.
***Please pray for Liam. He is the son of a friend, around Josiah's age. He is BaTTLING leukemia, and at this point has not walked in five days. His parents faith is strong, but they could really use our prayers.***
Wednesday, February 23, 2011
Procedure today
Some people have a life verse from the Bible. I have a life chapter, LOL. Of course, I do love to be different. It's amazing though, that every time something is going on in my life that causes me fear or distress, I can go to Psalm 27. He always shows me something there! Today, He has led me to verse 6. Sometimes, it truly feels like a sacrifice to be joyful, but God asks us for sacrifices of joy, and for us to still sing praises to Him. Even though I am scared today, I will continue to sing praises to the One who already knows the outcome.
If you have read this blog in the past, you know that Victory in Jesus is very a special song to me. I've decided that I will sing this song today, to remind me that He is always victorious.
A note about the procedure that I will have today. It is called a LEEP procedure, and I have had them done in the past. This isn't the first time I've had abnormal cells, it's just the first time I've had them along with elevated blood tests. Previously, the abnormal cells were rated a stage 1 abnormal, and these ones were rated stage 4. The procedure I will have done today is not painful, but does cause pain afterward. I will not need to be sedated, just some local anesthetic will be given, and I'm sure I will be wishing for more once the pain sets in!! The oncology doctor will be right there to test the cells they get, and they will remove all abnormal cells they see right then and there. Then he will test those cells and I will get all of the results, hopefully by Friday. Thanks for praying.
If you have read this blog in the past, you know that Victory in Jesus is very a special song to me. I've decided that I will sing this song today, to remind me that He is always victorious.
A note about the procedure that I will have today. It is called a LEEP procedure, and I have had them done in the past. This isn't the first time I've had abnormal cells, it's just the first time I've had them along with elevated blood tests. Previously, the abnormal cells were rated a stage 1 abnormal, and these ones were rated stage 4. The procedure I will have done today is not painful, but does cause pain afterward. I will not need to be sedated, just some local anesthetic will be given, and I'm sure I will be wishing for more once the pain sets in!! The oncology doctor will be right there to test the cells they get, and they will remove all abnormal cells they see right then and there. Then he will test those cells and I will get all of the results, hopefully by Friday. Thanks for praying.
Saturday, February 19, 2011
More than I can handle??
"There hath no temptation taken you but such as is common to man: but God is faithful, who will not suffer you to be tempted above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear it."
Have you ever noticed that when people are going through struggles and trials, this verse gets quoted a lot? Or actually, misquoted and misinterpreted a lot? Over the past two years, so many well meaning people have said to me, " God promises not to give us more than we can handle", or even better- "Whatever happened to God not giving you more than you can handle?" I'll be honest here. There have been times when I've gotten alone with God and asked Him why. Why was my daughter born so early? Why did my daughter have a stroke? Why does my girl have a hard time walking? Why might I have cancer? Why, why, why??? Is this sinful in and of itself? Asking God why? No, I don't believe so. I mean, Jesus, the sinless One, asked that question why. He asked God why He had forsaken Him. My sin is self absorption. It's not the why, why, why- but the me, me, me!
So back to the verse above. I'm not even sure whether physical illness is included in temptation, but for now I'll just pretend that it is. This verse was written to saved people, God's children. So, I don't take this verse to say "Michelle, I won't give you more than you can handle." I take it to say(very loosely interpreted, LOL) "Michelle, I've already given you more than you can handle on your own. Remember Me. Talk to Me. You can't handle it on your own, but together we can get though it, and your faith in me can be even stronger. I will make a way for you to get through this."
I have been singing this song for the past couple of weeks, quite often. I will just continue to trust God's heart.
God is good!
Have you ever noticed that when people are going through struggles and trials, this verse gets quoted a lot? Or actually, misquoted and misinterpreted a lot? Over the past two years, so many well meaning people have said to me, " God promises not to give us more than we can handle", or even better- "Whatever happened to God not giving you more than you can handle?" I'll be honest here. There have been times when I've gotten alone with God and asked Him why. Why was my daughter born so early? Why did my daughter have a stroke? Why does my girl have a hard time walking? Why might I have cancer? Why, why, why??? Is this sinful in and of itself? Asking God why? No, I don't believe so. I mean, Jesus, the sinless One, asked that question why. He asked God why He had forsaken Him. My sin is self absorption. It's not the why, why, why- but the me, me, me!
So back to the verse above. I'm not even sure whether physical illness is included in temptation, but for now I'll just pretend that it is. This verse was written to saved people, God's children. So, I don't take this verse to say "Michelle, I won't give you more than you can handle." I take it to say(very loosely interpreted, LOL) "Michelle, I've already given you more than you can handle on your own. Remember Me. Talk to Me. You can't handle it on your own, but together we can get though it, and your faith in me can be even stronger. I will make a way for you to get through this."
I have been singing this song for the past couple of weeks, quite often. I will just continue to trust God's heart.
God is good!
Friday, February 18, 2011
A post about me
So, a couple of weeks ago, I started to have quite a lot of pain in my right side. It was pretty bad, but tolerable for a few days. Then, it got so bad that I drove myself to the ER, during a snow storm. I FULLY expected that it was a kidney stone, I have had them before and it is exactly what it felt like. The doctors there took a few blood tests, then sent me for and ultrasound. As I had suspected, she immediately found a kidney stone on the right side. However, she then moved to look at the left side. I've seen that look on a sonographer's face before, the day I was told that Lily's brain was only partially formed. Knowing that I'm not pregnant, I really wondered what was going on in my body. The lady, who had been quite chatty with me before, was suddenly silent. She finished the ultrasound, and sent me back to my room.
Within a few minutes, the ER doctor was back. He wanted to send me for a CT of my abdomen. I asked him what was wrong and he said the ultrasound had showed a large mass on my left ovary. I've had PCOS for years, so this didn't bother me too much. The CT was easy and before I knew it, I was back in my room. That wait was miserable. The doctor finally came back in and told me he wanted to admit me, for an immediate hysterectomy. I was in shock and said no way! He told me that the mass was 16.7 centimeters and had cut off blood flow to my left ovary. The chances of cancer were high and they needed to remove it immediately. I asked if he knew for sure it was cancer, and of course, they had done no biopsies or anything. So, I said I was going home and that I would call my own doctor. I had a ton of instructions and I had to sign papers stating that I wouldn't hold the hospital responsible if anything were to happen.
Fast forward a few days. Gracie got sick and was put in the hospital in the midst of everything. On the Monday after my ER visit, I went to my regular OB/gyn. He wanted to do an in office needle biopsy and blood work. The Ca-125 came back high. So, we sat on pins and needles again. On Sunday night, I was feeling perfectly fine, just a little more drained than normal. Suddenly, I realized I was bleeding, quite badly.On that list of instructions, number one was to return to the hospital with ANY bleeding. So, off I went. I got there and it was BUSY!! They stuck me in a room, put an IV in me and then did nothing. Finally, the same doctor I saw before came in. He ordered a blood pressure check- both sitting and standing. Wow. What a difference an hour can make! When I got there, my BP was a very normal 117/68. At this point the sitting BP was 89/56 and the standing was WAY lower. The nurse, who knows me as "Gracie's momma", looked quite concerned, and got me back in the bed immediately. I had to go for a CT with contrast, so I drank some NASTY stuff, and then I was basically knocked out from morphine. I woke up about 4 hours later to the doctor calling my name. I barely even remember having the CT scan or anything. I do remember when he injected the iodine into my IV, because I was mortified. It gives you a warm, fuzzy feeling all though your body...AND it makes you feel like you wet your pants!!! When I did wake up, the doctor had every intention of admitting me to the hospital. I even had a room number. Then I told him I was scheduled to see a specialist the next morning, and he sent me home. He said that it would be 2-3 days before I couldsee him inside the hospital, so he would send me home with strict orders to make my appointment.
Anyway- I'm tired of typing, so here is the condensed version- the hospital had to give me 2 units of blood. The next morning, I found out that the mass had gotten 6 cm smaller. The doctor did a needle biopsy and was able to get clear fluid from it easily. This test came back with level 3 precancerous cells, and the Ca125 came back higher than the first one. I also had a level 4 pap smear, which means abnormal cells there as well. This coming Wednesday, I will go in for a LEEP procedure. The doctor will go in and get scrape the abnormal cells out. Those will then be immediately tested, with both a radiologist and oncologist standing by. The specialist I see is about 95% sure that there is cancer there and he will need to remove the entire cervix. I'm going to be honest about how I am. I'm tired, in pretty constant pain, and scared. I have hope though. "Why art thou cast down, O my soul? and why art thou disquieted within me? hope thou in God: for I shall yet praise him, who is the health of my countenance, and my God."
God is good!!
Within a few minutes, the ER doctor was back. He wanted to send me for a CT of my abdomen. I asked him what was wrong and he said the ultrasound had showed a large mass on my left ovary. I've had PCOS for years, so this didn't bother me too much. The CT was easy and before I knew it, I was back in my room. That wait was miserable. The doctor finally came back in and told me he wanted to admit me, for an immediate hysterectomy. I was in shock and said no way! He told me that the mass was 16.7 centimeters and had cut off blood flow to my left ovary. The chances of cancer were high and they needed to remove it immediately. I asked if he knew for sure it was cancer, and of course, they had done no biopsies or anything. So, I said I was going home and that I would call my own doctor. I had a ton of instructions and I had to sign papers stating that I wouldn't hold the hospital responsible if anything were to happen.
Fast forward a few days. Gracie got sick and was put in the hospital in the midst of everything. On the Monday after my ER visit, I went to my regular OB/gyn. He wanted to do an in office needle biopsy and blood work. The Ca-125 came back high. So, we sat on pins and needles again. On Sunday night, I was feeling perfectly fine, just a little more drained than normal. Suddenly, I realized I was bleeding, quite badly.On that list of instructions, number one was to return to the hospital with ANY bleeding. So, off I went. I got there and it was BUSY!! They stuck me in a room, put an IV in me and then did nothing. Finally, the same doctor I saw before came in. He ordered a blood pressure check- both sitting and standing. Wow. What a difference an hour can make! When I got there, my BP was a very normal 117/68. At this point the sitting BP was 89/56 and the standing was WAY lower. The nurse, who knows me as "Gracie's momma", looked quite concerned, and got me back in the bed immediately. I had to go for a CT with contrast, so I drank some NASTY stuff, and then I was basically knocked out from morphine. I woke up about 4 hours later to the doctor calling my name. I barely even remember having the CT scan or anything. I do remember when he injected the iodine into my IV, because I was mortified. It gives you a warm, fuzzy feeling all though your body...AND it makes you feel like you wet your pants!!! When I did wake up, the doctor had every intention of admitting me to the hospital. I even had a room number. Then I told him I was scheduled to see a specialist the next morning, and he sent me home. He said that it would be 2-3 days before I couldsee him inside the hospital, so he would send me home with strict orders to make my appointment.
Anyway- I'm tired of typing, so here is the condensed version- the hospital had to give me 2 units of blood. The next morning, I found out that the mass had gotten 6 cm smaller. The doctor did a needle biopsy and was able to get clear fluid from it easily. This test came back with level 3 precancerous cells, and the Ca125 came back higher than the first one. I also had a level 4 pap smear, which means abnormal cells there as well. This coming Wednesday, I will go in for a LEEP procedure. The doctor will go in and get scrape the abnormal cells out. Those will then be immediately tested, with both a radiologist and oncologist standing by. The specialist I see is about 95% sure that there is cancer there and he will need to remove the entire cervix. I'm going to be honest about how I am. I'm tired, in pretty constant pain, and scared. I have hope though. "Why art thou cast down, O my soul? and why art thou disquieted within me? hope thou in God: for I shall yet praise him, who is the health of my countenance, and my God."
God is good!!
Friday, January 28, 2011
Opthalmology update
So, we went back to the local eye doctor yesterday. She has an appointment in Rochester in April, but I have been seeing far too much squinting and head tilting to wait that long. She has needed to have her eyes dilated so that he could get a good look at her optical nerves, but since the seizure that was a no- go. Things like that can increase blood pressure, cause a child to pass out, and then a seizure can occur. I talked to her neurologist about it though, and she said that those chances were very slim and that I should go ahead, because we need to find out about the condition of her eye. I agreed wholeheartedly....but that didn't make me any less worried!!
I explained to her that the man was going to put a drop in each eye and that it was going to hurt and make her vision blurry. She was nervous, but ok. Then he came in (an assistant, not the doctor), and I asked him how long it would take to wear off. His answer- "Sometimes two minutes, sometime two days. Now hold her down." Um no. My already unstable on her feet child can NOT have blurry vision for TWO DAYS. That's unacceptable!! So I told him I'd like to wait and talk to the doctor about it. He was visibly annoyed...oops. The doctor came in and told me he was planning on using the fastest acting eye drop on her, and that her vision should be mostly normal by the end of the night, and then back to normal in the morning. He also apologized for the other man- he had been standing right outside the door. I held her down while he administered the torture drops, and we went out to play for a while. Oh my, she was like a drunken sailor. Her vision being blurry upset her at times and made her giggle at other times--- she was just off the wall.
Finally, it was out turn to go back in. She hates bright lights, and he has to use a very bright one ( think flood lights) to see her nerve. So she squirmed and cried and kicked the chair. MY CHILD IS STRONG!!! I could barely hold her, but he did get an "ok" look.. Here's the surprise. Her nerve looks perfect. Her eyes are both farsighted, at 150- but he said that it's normal for a child this age and he wouldn't give glasses for it. So, now we are both left wondering about the visual field cut. Since her nerve is perfect, the field cut is unexplained. However, she definitely turns her entire head and strains her eyes to look at anything from a distance. Thankfully, yesterday he was able to see her do it. Now he knows what I'm talking about and that I'm not completely crazy. The only thing he can think of is that she started doing it when she first began to get her vision back and so her brain has trained her head to turn to look farther away. It's definitely not the definitive answer I wanted, but I guess it's better than something being terribly wrong in her eye. So, we will just keep an eye on it and if it gets worse, she will go back, but otherwise, we are good for 6 months.
Some pictures from yesterday:
I explained to her that the man was going to put a drop in each eye and that it was going to hurt and make her vision blurry. She was nervous, but ok. Then he came in (an assistant, not the doctor), and I asked him how long it would take to wear off. His answer- "Sometimes two minutes, sometime two days. Now hold her down." Um no. My already unstable on her feet child can NOT have blurry vision for TWO DAYS. That's unacceptable!! So I told him I'd like to wait and talk to the doctor about it. He was visibly annoyed...oops. The doctor came in and told me he was planning on using the fastest acting eye drop on her, and that her vision should be mostly normal by the end of the night, and then back to normal in the morning. He also apologized for the other man- he had been standing right outside the door. I held her down while he administered the torture drops, and we went out to play for a while. Oh my, she was like a drunken sailor. Her vision being blurry upset her at times and made her giggle at other times--- she was just off the wall.
Finally, it was out turn to go back in. She hates bright lights, and he has to use a very bright one ( think flood lights) to see her nerve. So she squirmed and cried and kicked the chair. MY CHILD IS STRONG!!! I could barely hold her, but he did get an "ok" look.. Here's the surprise. Her nerve looks perfect. Her eyes are both farsighted, at 150- but he said that it's normal for a child this age and he wouldn't give glasses for it. So, now we are both left wondering about the visual field cut. Since her nerve is perfect, the field cut is unexplained. However, she definitely turns her entire head and strains her eyes to look at anything from a distance. Thankfully, yesterday he was able to see her do it. Now he knows what I'm talking about and that I'm not completely crazy. The only thing he can think of is that she started doing it when she first began to get her vision back and so her brain has trained her head to turn to look farther away. It's definitely not the definitive answer I wanted, but I guess it's better than something being terribly wrong in her eye. So, we will just keep an eye on it and if it gets worse, she will go back, but otherwise, we are good for 6 months.
Some pictures from yesterday:
She thought it was hysterical when I told her that the thing in the middle is the way a phone used to look "Mom, you're a silly willy nilly willy!"
"Grace what do you see?"
"A hot balloon"
Which sounded like " a dead baboon" with her mouth crushed up. So funny.
"Oops, Mom I fell. Where's the floor?" After her eyes were dilated.
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