my little girl
well, not exactly sure how to feel about the results of the EEG. i spoke with a nurse from our neurologists office yesterday. she shared that the results were ‘normal’. i thought that would mean the epilepsy is gone. but it doesn’t. it means that the epileptic activity wasn’t there during the test. it could have been there before the test. it could have been there after. it could be there right now. there’s no way to know.
because it didn’t show up during the test, we are supposed to wean amelia from her meds. she takes 4mL total, every day. 2mL in the AM, 2mL in the PM. the plan is to remove 1mL at a time, for two weeks at a time. the whole process should take 7 weeks. then, no more meds.
she could still have epilepsy.
she could start to have seizures again.
this scares me. makes me want to freeze time and stay right where i am. she’s safe from her seizures here.
but i can’t freeze. the Lord is calling me to move forward. He’s telling me to trust Him. and because the future of amelia’s epilepsy is uncertain, i have to trust Him more to move forward, than i do right now. and that’s what He wants from me.
“trust in the Lord with all your heart, lean not on your own understanding. in all your ways acknowledge Him and He will make your paths straight.” proverbs 3:5&6
we had a beautiful day today, my little girl and i. we spent the afternoon at church for a service project for the girls program she’s in there. it was a busy time, making placemats and encouragement cards for people at our local homeless shelter, and making ornaments for the angel tree dinner our church is hosting. her pictures on the placemats weren’t so lovely. her words on the cards were misspelled. but her heart was so big and sincere. i am so glad that at such a young age she’s learning about those less fortunate. and she’s learning how to share Christ’s love with them.
read like this: let the people praise and…
come on
really? are you kidding me? remember that saying, “be careful what you ask the Lord for. He just might give it to you?” remember me wanting to have real joy today? well, to help me along, He allowed the following.
phone-ring ring
me-answering the phone-hello
person on other end of the phone-ah yes, mrs. smith? hi, this is the nurse at xyz school. amelia’s teacher just brought her down to the office. we think she has pinkeye. you’ll need to come get her.
me-oh. i just sat my boys down to eat lunch, i’ll be there in a few minutes.
this is at 11:45. orville and wilbur need to finish eating, brush their teeth, go potty and leave by 12:25 so orville can be at school on time. and i am supposed to go to the grocery store, finish four loads of laundry, bake 4 dozen cookies, prepare dinner for the in-laws, and take amelia to the doctor?
really? really? Lord, really? yeah, really.
i called my mother-in-law.
me-hi. amelia’s school called. they think she has pinkeye.
MIL-oh no.
me-do i need to take her to the dr. for this?
MIL-probably not. they might be able to just call in a prescription for you.
me-are you still willing to come over tonight?
MIL-yes.
me-i don’t think i can do this.
MIL-yes, you can. call the doctor.
me-thank you.
got off the phone. called the doctor. it’s 12:05 and they are closed for lunch from 12-1. perfect!
got the boys ready for school. picked amelia up from school. took orville to school. went to the grocery store. decided a campbell’s supper bakes meal would do. yes, even for the in-laws. left the grocery store. called the doctor. they probably can call in a prescription and if not, they’ll let me know.
come home. call my mother-in-law. tell her about the doctor. tell her about my blog from this morning. tell her about the joy. she laughs. out loud. and it makes me thankful that i have her.
so here i sit, at the computer blogging. the dryer is almost finished, only two loads to go after that. i don’t need to bake 4 dozen cookies because i can’t go to the cookie exchange. i’m eating leftover pizza. amelia and wilbur are playing with legos. i would like to start pulling out my hair. but, God just tugged at my heart. “who’d be caring for amelia if you weren’t? do you not see the joy in that?”
thank you Lord.
oh, and what’s next?
Filed under Jesus, children, family, parenting | Comments (2)back to normal?
well, since there’s no such thing, i guess not. will have wilbur home from school today. he’s fine this morning, but still had a fever last night. oh, that darn 24 hour rule! orville will go, but he has a stuffy nose. poor little guy. it’s so hard when they are so little. he can blow, but not well on his own. wilbur has the stuffy nose too, and a bad cough. and amelia is stuffy as well. and she woke up with red eyes. she said she was rubbing them a lot in her bed. and that they had some ‘crunchies’ on them, but daddy helped her and wiped them off. i decided before we left for school that she needed drops. big drama! but the eyes looked much better after the drama ended. and mommy was able to gently explain the importance of obeying(keeping your eyes open for drops), even when we don’t want to obey. what do i find myself saying all the time?? ahhh, the joy of parenting.
the joy of laundry, four loads. the joy of vacuuming, the upstairs only, because i did the downstairs yesterday. the joy of dusting, haven’t done that in awhile. the joy of grocery shopping, at least it’s only with one kid while the other two are in school. the joy of baking 4 dozen cookies for the cookie exchange at mother’s club at church tomorrow. or should i find joy in buying 4 dozen cookies?? the joy of preparing dinner for the in-laws, which i really am happy to do. especially because they are watching the kids so josh and i can go to amelia’s school conference. and they are watching them earlier than we need them to so josh and i can go out to dinner together before the conference. but, my mother-in-law has become a gourmet cook in her all-the-children-out-of-the-home-days, so my all-the-children-in-the-home-days produce inferior meals compared to hers. and please know, this is all coming from my brain and my insecurities. she’s never said anything bad about my cooking. it’s just that i know chicken and noodles from the oven doesn’t sound as cool as something that has been sautéed or poached.
wow, i am really not feeling the joy today. the sarcastic kind, yes. but not real joy. to my Lord i go.
“bring joy to your servant, for to You, O Lord, i lift up my soul.” psalm 86:4
“the Lord is my strength and my shield; my heart trusts in Him, and i am helped. my heart leaps for joy and i will give thanks to Him in song.” psalm 28:7
Filed under Jesus, children, family, marriage, parenting | Comment (1)strange day
it’s been an odd one. went to church this morning since i knew i’d be home with the sick kid tonight.
we always go at night. haven’t been in the morning in a long time. felt strange. but oh, the message was so good. we studied 1 corinthians 6:12-20. these verses stood out to me the most, 19+20, “do you not know that your body is a temple of the Holy Spirit, who is in you, whom you have received from God? you are not your own; you were bought at a price. therefore honor God with your body.”
our pastor said this, “we belong to God, our Lord, by creation and by salvation. we need to keep our bodies healthy so we can honor him mentally, physcially, sexually, spiritually. nothing about us is an accident, we are fearfully and wonderfully made. psalm 139:13-16 says, “for You created my inmost being; You knit me together in my mother’s womb. i praise You because i am fearfully and wonderfully made; Your works are wonderful, i know that full well. my frame was not hidden from You when i was made in the secret place when i was woven together in the depths of the earth, Your eyes saw my unformed body. all the days ordained for me were written in Your book before one of them came to be.”
oh, how amazing. God knew, as He was forming me, that my body would be infertile. and yet my body is still a wonderful creation. and God knew, as He was forming amelia, that her body would develop epilepsy. and yet, her body is still a wonderful creation. Lord, i praise You because i am fearfully and wonderfully made. and i praise You because my amelia is fearfully and wonderfully made.
after church, i headed to our local Christian bookstore. had a coupon and wanted to get some things for the kids for Christmas. this was at 10:30am. found out they don’t open till 1pm.
got home a little before noon. kids still in jammies. amelia coloring at the dining room table. wilbur resting on the couch. orville building legos. josh working on tonight’s lesson for our Sunday school class. he had already done most of it during the week, but his computer had some issues and he lost it. at least for the time being. so, he had to start over. the kids slowly got dressed, one by one. then the wild came on disney channel. instead of starting lunch, we had popcorn. oh, Sunday afternoons.
at 1, i headed back to the store. on the way, i heard a message by crawford loritts. he was talking about what Jesus says about storms.
mark 4:35-41 “that day when evening came, He said to His disciples, “let us go over to the other side.” leaving the crowd behind, they took Him along, just as He was, in the boat. there were also other boats with Him. a furious squall came up, and the waves broke over the boat, so that it was nearly swamped. Jesus was in the stern, sleeping on a cushion. the disciples woke Him and said to Him, “Teacher, don’t You care if we drown?” He got up, rebuked the wind and said to the waves, “quiet! be still!” then the wind died down and it was completely calm. He said to His disciples, “why are you so afraid? do you still have no faith?” they were terrified and asked each other, “Who is this? even the wind and the waves obey Him!”
here’s what i jotted down in the car, some of what dr. loritts had to say. why are you afraid? why do you want to run? don’t hide from the storm. LOOK AT IT! God allows the storms. they are often the things we fear most. He allows them so when they are over, we look at Him with awe and wonder. even the disciples did. “Who is this? even the wind and the waves obey Him!” it’s not the storm that is the problem, it’s the unbelief in our hearts. He controls the storms. He controls everything we fear.
i thought of amelia’s epilepsy. the fear that if it comes back, we’ll have to go through the seizures all over again. the fear that if it comes back and we can’t control it, we could lose her. i thought of my dear friend who is going through a hard time in her family. oh, she is being so tested. but, beyond the test, you can see God refining her, making her more like Himself. and it is beautiful.
while sending this friend an email tonight, i said the following…“strange night and day ahead of me. so comforting to know God already had this planned and He’s gone ahead before me. wow! that just gave me chills. i pictured Jesus walking through the halls of the hospital and opening the doors that we’ll be walking through tomorrow. it’s like He’s saying, “I am here. just take the next step. keep going. I’ve already cleared the way.”
“tis so sweet to trust in Jesus,
and to take Him at His Word;
just to rest upon His promise,
and to know, “thus saith the Lord.”
Jesus, Jesus, how i trust Him!
how i’ve proved Him o’er and o’er!
Jesus, Jesus, precious Jesus!
o for grace to trust Him more!
i’m so glad i learned to trust Him,
precious Jesus, Savior, friend;
and i know that Thou art with me,
wilt be with me to the end.
Jesus, Jesus, how i trust Him!
how i’ve proved Him o’er and o’er!
Jesus, Jesus, precious Jesus!
o for grace to trust Him more!”
Louisa M. R. Stead, c. 1850-1917
fever? or a seizure?
amelia started feeling sick monday night. she felt warm, didn’t have much of an appetite, so we gave her some tylenol before bed. tuesday morning she woke up dizzy with a temp of 103.3. more tylenol. resting on the couch all day. and watching little girl movies, mary poppins and ariel’s beginning. her fever broke mid-day and was down to 99.2. then before bed, it shot back up to 102.3. she also developed a cough and stuffy nose. this morning her temp was 102.9 and she couldn’t stop coughing. i called the doctor. the doctor found nothing but a stuffy nose and a temp of 100. they suggested a decongestant, tylenol, and rest. but, what about the EEG?
talking with a friend yesterday, i wondered why this sickness came at this time. tuesday i was supposed to have lunch with josh. today i was supposed to have lunch with another friend and then watch the boys in a program at their school. tomorrow the EEG. and life as usual. “maybe God doesn’t want her to have the EEG on thursday,” my friend offered. “oh, maybe He doesn’t. maybe thursday isn’t the right time,” i said. why? hey, i don’t know. most of the time what He does in beyond me. that’s why He’s God. right?
maybe He wanted me to have some alone time with amelia. she’s such a joy when the boys aren’t around. i think because it’s not as loud and there’s no one else for me to have to share my time with. and maybe He wanted me to have something to do today because while i was taking amelia to the doctors, my friend that i was to have lunch with was getting induced a week before her baby is due. and maybe, well, who knows.
i called the neurologist’s office. they transferred me to an EEG tech. she said even if the fever is gone, and the stomach is fine, the coughing and stuffy nose will make it hard for amelia to rest and even fall asleep, to have the testing done. on top of that, she’ll need to be sleep deprived, but she needs to sleep so she can get better. i will call in a bit to reschedule the EEG, and i’ll let you know when it is. thank you so much for your prayers and well wishes.
here is ameila forcing a smile before bed monday night. yes, those are m&m’s on her plate. i let her have some halloween candy, even though her tummy hurt a little.
now for the explanation of the title of this post. amelia was with me yesterday when i picked the boys up from school. the teacher wilbur has for pre-k is the same one amelia had. she is the teacher who was with amelia when she had her first full seizure two years ago. she knows our family, and our story well. so when i picked wilbur up, this teacher just looked horrified.
me-”oh, he didn’t behave well did he?”
teacher-”no.”
me-”oh no, he didn’t?”
teacher-”oh, no wait, he was fine. but i think he told me something that maybe he wasn’t supposed to tell me?”
me-”what?”
teacher-”that amelia had a seizure.”
me-”no, oh my. no, she didn’t. she woke up with a fever.”
then i remembered that in the morning he was asking me what sissy had. “a seizure? a theater?” “no buddy, a fever. sissy has a fever. ”
here are the kids with our favorite teacher on amelia’s last day of pre-k(may 2007).
and finally, the boys had a trip to the dentist monday. wilbur has been before, but this was orville’s first time. wilbur went first and was so big and brave. he did such a great job! his great behavior showed his brother there was nothing to be afraid of. then orville did a great job too. he had a scared look on his face most of the time, but not a tear was shed.
they got to pick some treats when they were finished. and they made their mama proud. they also made me think that maybe we’re doing a pretty good job. maybe they had good behavior because we’re teaching them too. and maybe they weren’t scared because we’ve made them feel secure. just a thought.
Filed under Jesus, adoption, children, family, parenting | Comment (0)epilepsy
it is with a heavy heart and a good dose of fear(though i want that human emotion to go away) that i write this post. on december 1st, 2006, amelia was diagnosed with epilepsy. she had seizures daily, and often multiple times a day, for about 3 months following her diagnosis. her medication kicked in and she has been seizure free since then. praise God!
when she was first diagnosed, we were told she’d need to be on the medication for two years and then she could be retested to see if the epileptic activity in her brain was gone. so this thursday, october 30th, she will have an EEG.
we’ve been through this before, two years ago. but, at that time had no idea what a life with epilepsy would be like. the seizures were horrendous and life as we knew it totally changed. i can’t tell you how many times we woke to a loud noise in the middle of the night to find amelia face down in the hallway, or on the bathroom floor. i can’t tell you how many times wilbur, 3 and a half at the time, had to yell for us because “sissy was shaking.” i can’t tell you how hard it was to drop her off at school in hopes that she’d be okay. and i can’t tell you how scared i am that we might have to go through it all again.
i am praying, and would like to ask you to join me. i want to pray for healing, but more importantly, for God’s will in my little girl’s life. if it’s His will she be healed, i’ll take it. if it’s His will she not be healed, i’ll take it. but, i’ll need even more prayer then. for strength and for peace.
here she is, december 1st 2006. and now, october 2008.
He was with us then. He is with us now. and He’ll be with us thursday.
“for God has not given us a spirit of fear,
but a spirit of power,
and of love,
and of sound mind.”
II timothy 1:17
“fear not, for I have redeemed you;
I have called you by name; you are Mine.
when you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
when you walk through the fire,
you will not be burned;
the flames will not set you ablaze.
for I am the Lord, your God,
the Holy One of Israel, your Savior.”
isaiah 43:1-3
odd and ‘evening’ numbers
tonight i am feeling really grateful. for many things. i thought i’d jot them down. it’s a good way for me to remember them. and it’s good to share what we’re grateful for.
-amelia accepted Jesus as her personal Savior today. we’ve talked about this quite a few times and she’s always said she did while she lived in her foster home. but today when we talked about it she said she wasn’t sure. i asked her if she’d like to pray about it. she asked if we could at night. i told her we didn’t have to wait. so we didn’t. my heart is overflowing as i think about it. and i can’t help but think, if she would have stayed in her birth home, that she may have never had the opportunity.
-while amelia was doing some ‘homework’ from her church binder, wilbur expressed that he’d also like to have a binder when he’s in the program his sister is in. i explained that he couldn’t because the program is just for girls and he’s, well, a boy. then i explained a little about the boys program, which he’ll enter in 1st grade. i told him they do cool things like, go camping and hiking, and build wooden cars. orville chimed in and said, i want to go camping too so i can find snakes and butterflies.
-orville has been saying all kinds of cute things lately. like, wait a second guys. or i can’t see the driveway from my window because the roof is blocking it. or amelia’s stuffed dog can’t wear a collar because our dog shelby doesn’t have one.
-amelia is learning about odd and even numbers in school now. she just can’t seem to get even right. she keeps calling them ‘evening’ numbers. and, she got frustrated with me tonight because i was teaching her the right way to say pumpkin. it’s pumpkin, not punkin.
-josh made the dad from amelia’s dollhouse go to the bathroom on the roof. amelia was just beside herself laughing.
-orville, at bedtime prayers, thanked Jesus for our ice cream with prinkles(sprinkles). amelia thought he said ice cream with pickles.
-i was able to share a very deep and personal thing with a friend today. i asked her to take it to the Lord in prayer. i know she will. and i know she’ll take it very seriously.
-the Lord is once again using sara groves to speak to my heart.
“hello Lord, it’s me Your child–i have a few things on my mind–right now i’m faced with big decisions, and i’m wondering if You have a minute–right now i don’t hear so well and i was wondering if You could speak up–i know that You tore the veil so i could sit with You in person and hear what You’re saying–but right now, i just can’t hear You–i don’t doubt Your sovereignty–i doubt my own ability–to hear what You’re saying and to do the right thing–and i desperately want to do the right thing–right now i don’t hear so well and i was wondering if You could speak up–i know that You tore the veil so i could sit with You in person and hear what You’re saying–but right now, i just can’t hear You–somewhere in the back of my mind i think You are telling me to wait–and though patience has never been mine–Lord I will wait to hear from You–right now i don’t hear so well and i was wondering if You could speak up–i know that You tore the veil so i could sit with You in person and hear what You’re saying–but right now, i just can’t hear You”
-amelia, when starting to pray earlier, said we should thank God for Jesus, mary, moses and their horse. i asked her if she meant Jesus, joseph, mary and their donkey.
-saturday we went to a local farm for a fall festival with some friends from church. we had a good night together as a family and got some great pictures. i love great pictures!
-amelia turned 7 on Friday. can’t believe i have a 7 year old! she used great manners at her party, said thank you to everyone without being reminded, and seemed genuinely grateful.
-i slept really well last night.
-when questioning the Lord on certain things, He reminds me He’s given me some answers already. He reminded me today that He is the best father. He allows me what i need, what He needs me to have.
-it’s alyssa and scott’s 1 year anniversary today. i love being friends with you guys!
-i get to go on a field trip with my boys tomorrow.
-part of amelia’s church homework included her explaining “why and i here?” to me. her immediate answer was, because you adopted us, because you wanted me. the question was getting at something more profound than what 7 year old can answer, but i think her take on it was extremely profound. her being adopted is a good thing in her eyes.
-my mother-in-law is amazing. not many people can say that. but i can. and i say it often. we got to spend some time together, just us, on Sunday. and it was fun.
-i get to go to bed now. in my big, cozy bed. and i love it.
-i, Lord willing, will get to have another day tomorrow. and if He grants it, He’ll walk through it with me.
Filed under Jesus, adoption, children, family, music | Comments (4)