As long as...

A family friend recently asked Curt if he was looking forward to having a boy or a girl.
"Well, it doesn't really matter!"
She laughed and then said something that a person hears a lot when they are expecting:
"Yeah, i guess so. As long as the baby is healthy!" Curt, without thinking blurted out, "Actually, that doesn't really matter either." She looked a little taken aback and then Curt tried to explain why he had said that. "Well, i know what you mean but... We've had 6 children born to us. They were all "healthy" and "perfect". Seven years after Darren was born he was diagnosed with epilepsy. At three, our daughter Sadie was diagnosed with a rare hormonal deficiency called diabetes insipidus. There are no guarantees in life and although we don't want them to be in pain or suffer, we wouldn't trade them for any other two healthy children in the world." When he got home that night he brought up the conversation with me and how he had surprised himself with what he had blurted out. "But Jess, it's true." Yeah, it is.
"As long as they are healthy..." what?
-then i'll be happy?
-then i'll be thankful?
-then i'll know that the pregnancy was "worth it"?
-then i'll know that they will have an easy life and not worry?
not true.
Jesus,
My children are in your hands. I give them back to you. With their strengths, with their frailties...."as long as they belong to you...then I'll know that they have been *fully delivered*.

Nothing can separate us from His great love...

Had a dream about the kids last night. (For those of you who don't normally read my blog, you will need to know, for the sake of the dream, that i have a son with epilepsy and a newly diagnosed 3 year old with "partial central diabetes insipidus")
Was on a long journey to get help for the sake of my children.... sleeping in shallow ditches and hiding from the enemy at night. When we got to where we were going, it was a large open field we waited in. Darren and I were the focus of the dream at this point. We were sitting on a long, wooden bench. Behind it was a curtain where thieves were stashing stolen items. We were surrounded by thieves and robbers and they were a part of where we were coming for help. A loud speaker announced that Darren was buying something. A Daniel Boon lid for something we didn't need or want... 40$ (everyone around laughed.) We were shocked. We didn't ask for, nor want that item, nor want to spend that on a worthless item. The loud speaker announced that we were paying 50$ so our change was going to be one dollar! We were being cheated...over something we didn't even ask for. I took the kids to the "cashier/receptionist" to clear things up. It was confusing... and they didn't want to listen or help. As i was dealing with the lady, Ellie, my 6 year old pointed out a little boy who was standing by the doorway and said to Sadie, "Look, that boy is about your size." As my back was turned, trying to deal with Darren's issue, Sadie went over to meet him. I turned around and a crowd of people were sweeping out the door... and her with them. I asked the lady to wait and ran to get Sadie. When i came out the door, everyone was gone, Sadie was so tiny and in a hospital gown, smiling and gliding towards a nurse in an open doorway. I sobbed, knowing that she was going to die and yelled out "no!"... The nurse was kind and brought me along with Sadie, but when i went through the door Sadie was "gone"...all there was left was to find out why...the dream went on with the process of brain scans, extremely detailed pituitaries with salt crystals floating out of holes along it's scaly length, conversations with doctors with Wesley in my arms and the other children standing...waiting....
Today a package came with the kids' math books for next year and in the package was also a CD that I had ordered because of a song i had heard on our local Christian radio station. I put the song on repeat as i did laundry and sobbed. God's timing is perfect. He knows the fear of a mother deep in worry, who feels "robbed" by illness. Just a timely reminder from God that we are not separated from Him, even in our sorrow, even in our worry, even in our work. He is in the middle of it with us. We belong to Him. Here are the lyrics...I also added it to my playlist.
Not angels,
nor demons,
no power on earth or heaven
Not distance,
nor danger,
no trouble now or ever
Nothing can take me from your great love
Forever this truth remains
I belong, I belong to you
I belong, I belong to you
Not hardship,
nor hunger,
no pain or depth of sorrow
Not weakness,
nor failure,
no broken dream or promise
Nothing can take me from your great love
Forever this truth remains
I belong, I belong to you
I belong, I belong to you...

Thinkin' Straight

Darren has never seemed to have problems with side effects from his anti-seizure meds before, and usually the weakness after a seizure fades within a day or so but this last one was the worst one I'd ever seen. He's been tired yesterday and today. He's in a great mood... but tired... finding it hard to concentrate. When Curt came home, he laid on the couch and let the little ones smother him with "wrestles" and questions. Darren pulled up a stool by Curt's head and started complaining about his frustrations today. I could see the worry in Curt's eyes but this is what he said to Darren.:

Curt: Well, if you're feeling like that, maybe it's time for a little test to see if you're thinkin' straight....If i have 3 gophers and i shoot 2 of them, how many gophers do i have?

Darren: One!

Curt: Wrong. I have 3 gophers, two are dead and one is alive. You're right! You sure aren't thinkin' straight today boy!!

Darren's face melted into a smile and Carrie giggled and repeated the answer, thrilled with a new joke to catch her Grandpa with. (Carrie and her Grandpa have a "knock knock" joke that has been going on for years. The one where you ask them if they will forget you in 100 years and then you say "knock knock" hoping that the other person will say "who's there" and they will have "forgotten" you already?.... Anyways, No one will say "who's there" It's always "Hi Grandpa!" or "Hi Carrie" in answer to the prompt "knock knock".) Finally a fresh joke to test if Grandpa is thinkin' straight.

Today is a day of...

Today is a day of...

Waking up to the sound of a seizure.

Carrying an 11 year old muscle-bound farm boy to the living room couch only to hear him fall off the couch 2 hours later tight in the grips of another seizure that turns him blue.

A 9 year old girl witnessing her hero in confusing pain, wide eyed and not responding.

Curt only needing to hear "I need you." before answering "I'll be right there."

Staying home to make chili, banana bread, coffee and biscuits to stave off the heartache.

A synthetic hormone finding it's home so that a 3 year old girl can have the best day of her life since Feb.

Grampsie visiting by divine providence.

Baseball practices with Gramps and Curt.

Dairy Queen ice cream with Grampsie.

Curt selling horses.

Kids scrubbing out the old swimming pool and filling it with warm water and bubbles.

Sunshine.

Clean floors.

My son waking up...finally.

Staring into the eyes of my Heavenly Father who knew this day was going to come and sent 3 encouraging cards through faithful servants in the mail yesterday for me to read over and over and think about how much He cares too.

Joy in the Morning!!

I gave Sadie "over the counter" antacid (Diovol) the past 2 days. Probably more than she should have had but she's also had more vomiting/"D" than she should have had. The Pediatrician said that the Diovol should help to reduce the acidity of her volatile tummy so that it could heal up. I'm so thankful for a simple solution if it will help!! Last night, Sadie stayed up and ate a whole muffin! I know it's *small* sounding but after so long of not eating, it was shocking to hear her say "I'm HUNGRY." I didn't have to bribe her to eat by promising water. She wolfed it down and then settled into bed with me and slept the whole night. She didn't get up and ask for water till the morning when i woke up around 6 to the sound of her crying at the drink dispenser of the fridge. We had locked it the night before. She would not eat breakfast but at lunch ate a whole hot dog. Wow! I'm so relieved. So is Curt. He has been beside himself over Sadie. Waiting to see if the drinking problems will improve with an increase in appetite and eating. So thankful to friends for praying. So thankful to God for comfort, and another reminder that these little ones are not mine alone. They are on loan from His mighty hand. God, help me use my moments to point them to you so that they know where to turn in times of worry and doubt. On a side note: The pediatrician said that many of the anti-nausea act "on the brain" which tells the tummy to settle down but doesn't relieve what is happening in the tummy (eg. Gravol) which is the reason the problems keep re-appearing. He said that others can cause problems with diarrhea. (Pepto Bismol!) We had only given her the one dose of prescription meds. we were given in emerg. to take home to settle her tummy (so that she could keep water down) and that did nothing for her. We tried Gravol and she was very zoned out and, like the other medication, the vomiting returned full force as soon as it wore off. Thank God for an end to the 11 day fast and vomit festival! So thankful! Another thing to be thankful for is Darren. After his seizure the other morning, he threw up and got a wicked headache. I was scared that we were going to go through the same thing with him. I thought he had the flu and that i would have to be on the phone with his Neurologist about how to keep down the anti-seizure meds. He's never had the flu since he was diagnosed over 3 years ago. I e-mailed family and asked them to pray for that situation and I went upstairs with a dose of antacid and his morning medication for his epilepsy. He also needed Tylenol as sometimes the seizures create horrible "waving" headaches and he had one bad. The medicine stayed down and he didn't throw up again. Maybe the seizure created the nausea (which has happened before but not to that extent). Regardless, of physically why it happened that way, it is another answer to prayer in the nick of time. "WOOT WOOT!" ( ...as the teen generation likes to say.) So Happy!

Bad nights

Most nights I'm glad to see the pillow and sorry to see the sun peeking in behind the blinds. Last night was long. I tried to dole out the water in smaller increments to Sadie as she seems to drink it 16 oz at a time if i let her. I wanted the antacid the Dr. told us to give her time to do it's job without being diluted and flushed right out. She was sad that I made her wait between 1/4 cup intervals all night. Big red teary eyes staring at me. "Can I Please have my water now??" And even so, we went through almost 8 cups by morning. That is less than usual though. I don't want to limit her water as that is really all she's been taking in...just don't want her to drown her poor tummy into vomiting it all up. She got up this morning and promptly drank an 11 oz cup of water before any of us could stop her. On top of those continual interruptions of sleep (so that she could be doled out another 1/4-1/2 cup of water) her diaper had to be changed a couple times, we had to change the sheets once as the diaper leaked, and Wes had his normal nighttime wakings.... And then, i heard something on the monitor. Curt didn't think i was right, but i went upstairs to Darren's room and he was caught under all the blankets having a seizure. I stayed with him till it was over and he took the heaving breaths that mean he is going to fall into the arms of the deepest sleep I've never known and then i just went downstairs and put on my clothes. Sadie just came to me complaining that her new diapers we bought her won't stay up. Where is my chubby little potty-trained 3 yr old? :( Her weight is so low. I'm hoping the Dr. will call regardless of test results this second time around. I need help getting her back eating and to health. I'm at a loss and this is getting scary.

Counting

My sister Paige blogged the other day about counting her son's first steps. She had reached the number 66 while counting and her question was "Do I quit counting now?" Counting those chubby legged steps is so exciting. Throughout life we count up... to things like those 66 steps. The amount of years we were married, the number of meals we've made, the number of times we've moved etc. We count down to babies' due dates, Christmas celebrations, holidays birthdays etc. I've counted years that have passed since horrible events and years into the future to see how old I will be when my youngest is 10. The other day my son Darren had another seizure. As i watched him fade from chaos into sleep with wide-eyed non-responsive calm in between, the thought struck me... "This is something I don't want to count anymore." I'm done... but he's not.

Epilepsy

The other day my husband got a call from work that someone had fallen at his workplace. I rolled my eyes. "So are they suing?" This happens every now and then and people want to sue because they fell over the curb, or slipped on a slick of wet in the front doors...whatever. I find it frustrating that lawsuits seem to be the order of the day. As the day and story unfolded though, it became clear that she hadn't really just fallen. After paramedics had come and they had taken eye-witness accounts, a seizure was suspected. My husband and his father realized that they may have "the fall" on their video surveillance and pulled it up. When they told the paramedics that they had footage they were eager to see it. I was curious as well. Today I asked my husband to play it for me. Our son has epilepsy. All the children were in the room and wanted to see the footage as well, especially our son. Although he was diagnosed with epilepsy 3 years ago, he is not aware during his seizures. Only the rare foggy memory of post-seizure questions from us are held onto. "Are you okay Darren? Do you know what just happened?" And even then, the seizure has so depleted his strength that he is answering through a half-sleep that he does not recover from till morning. He's never had one in the day before. Never in public. Only in the middle of the night. We use a baby monitor to hear him. Curt finally found the clip and played it. She walked around the store and then came back near the surveillance camera. Suddenly she doubled over 90 degrees and then again suddenly went down on her face...her hands did not shoot out to protect her fall. Her legs were bent at the knee, her waist was still bent and she lay un-naturally like that while two other customers immediately came and tried to turn her over and help her, calling for the cashier. With the jerkiness of the camera surveillace system I could not tell "movement of the seizure" but i could tell the positioning of her body. It took about 10 minutes for paramedics to arrive and she still had not gotten up. One customer covered her with his thick winter coat. Everyone gathered around, staring helpless. I could almost hear the conversation... "What happened? Did she trip? Is she okay? how come she won't get up? Should we turn her over?" As a mother, it was my son I was watching... my son...