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…
my eyes hurt
i kept wanting to write yesterday, but felt if i did, and said things were going well, something bad would happen. josh usually takes the kids to church wednesday nights, i kept amelia home with me last night. around 7:30pm, i was thinking we were out of the woods. but then josh called at 7:45pm.
josh-we are on our way home from church already(it ends at 8:15).
me-why? oh know. what happened?
josh-wilbur’s teacher came to get me, he was a total basket case, crying, saying his eyes hurt.
me-oh great. he has pinkeye too? now he has to be home another day. wonderful!
josh-we’ll be home soon.
they arrived home shortly after the phone call ended. wilbur came bouncing in the house. i wanted to check his eyes.
me-wilbur, are your eyes okay?
wilbur-yes.
me-were you crying at church because they hurt?
wilbur-yes.
me-do they still hurt? where do they hurt?
wilbur-this one(his left eye) hurt right here, on the outside.
me-did the other eye hurt too?
wilbur-no, just this one.
me-it doesn’t hurt anymore?
wilbur-no. there was something stuck in it. like a crumb. it came out.
me-when did it come out?
wilbur-in the van, on the way home.
me-so you are fine? your eyes are fine?
wilbur-yes.
me-next time there is something stuck in your eye, don’t just start crying saying your eyes hurt. raise your hand and tell your teacher, using your words, not tears, that there is something stuck in your eye. your teacher can help you get it out.
Filed under children, family, parenting | Comment (0)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)and we’re home
and i’m exhausted. really. i really am.
things went well. amelia did great. much better this time around. two years ago she was a basketcase. couldn’t lay still. couldn’t fall asleep. couldn’t stop crying. today, she was perfect. thank you Lord!
our arrival
visiting with the fish in the waiting area
starting to relax, waiting to get hooked up to the machine, watching the wiggles on disney
all hooked up, 28 little buttons all over the head, and one on the heart
getting sleepy
the doctor should have the results in a couple of days. i’ll let you know.
thanks for your prayers!
oh, and Jesus? yeah, right there by our sides. the whole time. providing His perfect peace.
Filed under children, parenting | Comment (1)and we’re up
it’s early. 4:30 now, but i woke up at 3:20. amelia needs to be sleep deprived for her EEG so i needed to wake her by 3:30. and josh kept her up till almost midnight. they ate swenson’s around 10pm and watched tinkerbell. she started falling asleep towards the end so they played Wii fit. yeah, at 11:30pm. we’ll all be exhausted tonight! yet in the midst of my sleepiness right now, i can’t help but wonder how this would have worked if she weren’t living with us. would someone have quietly walked into her room, lifted her shade, whispered to her, and rubbed her back to help her wake? would they have carried her heavy seven year old body down the stairs in the dark? would they have started the tinkerbell movie at 3:45 in the morning. and eaten a bagel with her at 4:15? we may not always do a wonderful job as parents, but i know we always try our best. i am so thankful she’s with us. i’ll keep you posted on the rest of the day.
Filed under adoption, children, 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