Wednesday, May 27, 2009
All of a sudden, we heard a loud CLUNK that almost knocked Aggie off her feet. Then the thing stopped, no buttons would light up or anything. AAHHH! And of course Eldon was crying BEFORE we got on the elevator, so this didn't help! I pushed the alarm bell a few times.....
silence and more silence... so I picked up the emergency phone that connects to 911. After a few "hello, are you there? can you hear me"s I said "Apparently we are stuck in the elevator." "OK, help is on the way!" Of course in the background, Eldon is crying and Aggie is repeating "Mommy, when can we go? I want to watch Peter Pan mommy! When can we go mommy?"
Here I am with a crying newborn and a seizure waiting to happen... picturing myself trying to lift them up out of the emergency hatch at the top of the elevator! Boy, it was getting hot in there! Was it just me or was there no air coming in here?!
What could I do? I began making the best of waiting (and glad for my nerves sake I had Aggie's emergency meds right with us just in case!) We got out some books (thank goodness we had already checked out), and I read to Aggie for a bit while attempting to nurse a fussy baby.
We read and Eldon fussed and we read some more. Then without a bit of warning, the door opened and we were still on the lower level. I jumped a mile... I hadn't felt the need to be modest up until that very second! I was glad nobody was there waiting for us.
I walked out to the desk and none of the staff had any idea we had been stuck in the elevator. (I think we were only in there about 15 minutes- long enough!) Of course I told them, said if the paramedics arrived they would know why, and strongly recommended that somebody check out that elevator! A nice young man kindly carried my stroller up the stairs for us- I was not getting back in that thing!
So beware if you go to the library!
Let your gentleness to evident to all. The Lord is near.
Do not be anxious about anything, but in every situation, by prayer and petition,
with thanksgiving, present your requests to God.
And the peace of God, which passes all understanding,
will guard your hearts and minds in Christ Jesus.
They have had hours and hours of fun on this slip and slide too.
I'm not sure what happened to spring, but the kids sure don't seem to mind an early summer!
(By the way, now that I have little girls, I do wish they made more bathing suits like this one! When is this style going to come back already???)
Aggie LOVES computer time! Especially the game she calls "WHOO HOO!"
It is a puzzle game that says "WHOO HOO!" every time she puts a piece in the right place.
Even baby Marcus has learned to say "WHOO HOO" by watching her!
The girls got to go swimming on Monday at the Holiday Inn in Columbus. We had a ball- and Lorraine learned how to swim! She can now make it all the way across the pool and back with no lifejacket! We also had the joy of playing ping pong... Pam gave me and Quinn a good whoopin!
Lorraine had a fantastic weekend with her best friend Kathryn. Here they are sporting the newspaper hats they made with Grammy Pammy! They also made butterflies, and painted baseball caps, all while helping Grammy Pammy organize my house from top to bottom.
Peace and quiet AND a clean, organized house- definitely a reason for rejoicing!
Lord make my heart rejoice today. I know there will be some of the usual trials, but I know You are also here blessing and encouraging us. Open my eyes again to see Your gifts. Take my burdens Lord, and teach my heart to trust in You. Jesus, be my peace and my joy today.
Lord of all hopefulness, Lord of all joy
whose trust every childlike no cares could destroy
be there at our waking and give us we pray
Your joy in our hearts, Lord, at the break of the day.
Sunday, May 24, 2009
I know some people have been keeping up with this blog but you just don't know what to say anymore. I just want you to know I know that, and it is ok. I don't know what to say either. I don't like to be the person whose very presence reminds everyone of this huge sad thing, nor do I like Aggie to be that person. But we do, and we all feel a bit uncomfortable about that. We are in a time of trial, but even though it hurts we all know God is doing something here... we just don't know what it is.
This passage was both disturbing and comforting to me this week.
As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?”
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him."
While it is a comfort to know this trial has not come as a punishment, it is also a bit unsettling. If we were doing something wrong, there might be hope that we could figure it out and fix it, and everything would be ok again. If it has nothing to do with us but rather with some unknown plan of God... well, that is pretty scary to tell you the truth. I was actually quite comfortable imagining that I have control over where our life is headed, over what kind of family we would be. That is a hard illusion to let go of.
You know my heart Lord- I do not want to be made an example of! Nor do I want Aggie to be if it means suffering... I want a comfortable, normal life that I can pretty much control! If You are the one with the master plan, then that means I have no idea where this is heading. I am scared to trust you with her but I have no other choice.
You promise to do all things for the good of your children. You are her Father and You love her more than we do- Your Word tells us so. Display your works in her Lord. But please, Jesus, give me glimpses of it now and then!
Saturday, May 23, 2009
Sometimes it is good when other people give you the words to pray- I am praying this for Aggie, for myself, and for all of us who care for her.
"Cast all your care upon God, for He cares for you.'
Heavenly Father, You are indeed my Lord and God, who has created me when I was but nothing. In addition, You have saved me through Your Son. Now You have appointed me to this official responsibility and set this work before me. It does not proceed according to my will, and it is so great that it would otherwise weigh heavily on me and cause me great fear, that I of my own ability could find neither counsel nor help. Therefore, let everything be commended unto You, give me counsel and help, and remain faithful in everything, as you have promised. Amen.
Wednesday, May 20, 2009
Tuesday, May 19, 2009
I am so glad that God hears my cries and does not seem to get tired of my requests for strength, patience, safety for Aggie, and help of all kinds. He sent person after person into our lives this week with encouragement, help, and even meals! I do not know how we would be surviving without our friends and church family looking after us like they are. We may be way down at the end of our rope, but we are definitely cared for down here!
Monday we went with Josh's parents to Brown County State Park, and Aggie was more like herself than she has been in... I don't know how long. She is still having seizures, but on Monday they were short and less frequent, and she spent the day flitting around like a humming bird with her huge Aggie smile on her face.
a blessing of enormous worth to this weary family.
Could this be the new medicine kicking in or was it just a good day? Will the medicine keep working next week if it works this week? I don't know, and I almost want to guard against hope for fear of disappointment. But that is not right either, so I just pray constantly and keep on doing what is in front of me. There is enough work and worry to keep me busy today- but on this day there is also a joyful Aggie to flutter around with me.
Thank You Lord for that uneventful, normal day. My heart sure needed that.
Thursday, May 14, 2009
"A joyful heart is good medicine, but a broken spirit dries up the bones." We have a silly kids video from the 80s that puts this Bible verse to music, complete with a dancing clown that cheers a child up in the hospital. This is Aggie's most favorite song on this video and she typically cannot contain herself when it is on. Yesterday we were watching the movie and she had just had a couple seizures- her eyes lit up when she saw this song come on, but her brain was not able to keep up with the words so that she could sing along, much less dance. (She often has trouble finding words on bad seizure days- this seems to come and go.) She sat next to me and stared at the tv, then off into space.
As I saw that happening I felt the grief welling up again, but as I sat there with Aggie I felt the Lord encouraging me. Aggie has always been a playful joy-bringer, ever since she was a baby. She has always been the kind of kid who lights up a room, who starts a party everywhere she goes. She is going through a rough time now now, but the words are still true "A joyful heart is good medicine." Perhaps the joy and energy that normally comes from her can encourage her when it comes from other people.
As I think of this, I know I have seen it happen already. When daddy comes home every day, all the kids get excited, but Aggie ALWAYS drops what she is doing and runs with all her might to him, giving him the biggest hug she has inside. He likes to tease and play with the kids, and nobody appreciates teasing more than Aggie. And yesterday Katie came to play with the kids- yes, Aggie had four short seizures in the two hours Katie was here, but so what? She and all the other kids absolutely loved running and wrestling around with her.
That was good medicine for her and for all of us!
Lord, help me be a joy-bringer to my little girl today. Thank you for all the others you have sent into our lives to care for this family during this time, bringing us food and encouragement, playfulness and joy. As we all walk with Aggie through this valley, may we continue to remember Your promises and Your love for us that allows us to "rejoice always."
Monday, May 11, 2009
It was not exactly what we had hoped for (a quick fix!) but Josh and I are both comfortable with the way things transpired today. We will continue to lean on the Lord to face the challenges in front of us- one hour at a time.
I have a pile of unanswered emails and voice mails- sorry to those of you in my inbox... one of these days you will hear from me again, but for now I am going to bed! (after i get Eldon to stop crying that is!)
Now that the diastat is wearing off the seizures are coming back and getting worse. Yesterday and this morning she had a "melting" seizure that actually stopped her breathing and made her lips turn blue.
Apparently turning blue is common during seizures and usually they start breathing again on their own. (how comforting!) I am amazed that I slept last night (again proof that there is a God caring for us through all of this!)
We meet with the doc at 230 today. The folks at mayo told us if we can get her doc to call this an emergency they would be able to see her sooner. Please pray that help comes quickly one way or another. May God go before us.
Sunday, May 10, 2009
That morning while the kids watched cartoons I staggered into the office with my coffee and prayed and cried- Lord, I've got nothing. I have nothing to give these kids today, and there are needs everywhere I look. If there is going to be any sort of parenting going on today, any love or patience or joy or anything else, it is just going to have to come straight from you. Lord my heart is much too small for this job. Have mercy on my selfish self and carry me through this day.
Nobody but me fully understands what a miracle it was- but He answered that prayer and carried us through that day. "The Lord hears when I call to Him!"
This week has been full of lessons like that for me. Eldon is a joy though we are still getting used to a baby that actually cries! I am glad he allows me to multi-task- for example, this is Eldon "helping" me put away some clean laundry!
Marcus has now realized he is no longer the baby of the family and he is not happy about it. He often imitates Eldon's cries in hopes I will coddle him the same way! He still basks in the attention of his big sister Lorraine, who declares that he is the second cutest baby in the world (after Eldon- fortunately Marcus doesn't know what 'second' is- he just knows she loves him!)
I have no recent pictures of Seth because he hates having his picture taken most of the time and I am picking my battles wisely with him. He is in the mood lately to make everything a battle. Everything, that is, except eating up the attention given to him by the older girls at church!
And then there is Aggie, my dear Aggie.
Ever since she was diagnosed with epilepsy in the fall, there has been an undercurrent of sadness in our family that permeates everything we do. Sometimes her struggles are the loudest thing on my mind, sometimes she has good days and I almost forget about this trial. Like last weekend, she had three days in a row where she seemed to be doing fantastic, hardly any seizures, and the ones she had were so minor they were hardly a problem.
Then last Sunday her problems returned again. She has begun to have what we call "melting" seizures, where she slowly loses her muscle tone and will collapse to the floor if nobody is there to catch her. In the worst of these kind of seizures, she also has an in-between stage where is regains muscle tone but seems to be hallucinating or something. She gets very loud and combative, often tries to run or hit, but does not seem to know what she is doing and will not respond to anything you say or do for her (this is actually still part of the seizure.) She has to be forcibly restrained at this point until it passes, which last week often took several minutes. When it is over, she is completely exhausted and seems to have no memory of the wrestling match that just took place.
Last Tuesday she had five of these kind of seizures and several small ones in between. When she was not seizing she behaved very oddly- chewing strange things, emotional outbursts, etc. After a four minute melting/yelling seizure, we finally gave her diastat, an emergency medicine designed to "reset her seizure clock" (sort of like a computer reboot), used for extremely long seizures or "cluster seizures" (seizures that keep coming). The diastat kept her seizures away for two whole days, but they seem to be picking up again now. Those seizure free days reminded me of the nights after her MRIs as well- these strong meds do not seem to make her sleepy like most kids, rather she gets wild, uncoordinated, and very difficult to control.
That undercurrent of grief felt more like a flood this past week, as the burden of epilepsy seems to be getting heavier for all of us.
Two months seems like a long time to wait to go to Mayo- they will begin her testing July 15. I intend to go with her and Josh and Eldon while the other kids stay with grandparents. We do not know how long we will stay- it all depends on the results of the testing and what they intend to do for her.
In short, please pray for my little Aggie, and for all of us as we cope with the daily challenges!
Pray for her daily safety- these new seizures are a much greater concern. And please pray for me- I am surrounded each day by enormous needs and my heart is too small for this job! Pray that God would give me wisdom and love as I care for each of these children. I have already hit the bottom of my own resources and I know how desperately I need His strength and his grace every day. He is a faithful Father and He will provide.
and saves those who are crushed in spirit.
The righteous may have many troubles,
but the Lord delivers them from them all.