The good with the bad

This is proving to be an interesting season in our lives.  We are constantly discovering the complexity of life. Nothing is simple, and I think we are beginning to be thankful for that.  Would we prefer a simple life with no suffering? I think our answer on this is changing.  I used to work with children with severe handicaps at ChildServe, and I honestly hoped our children would never struggle or suffer like that.  I used to be ashamed to feel that way, but every parent wants the best for their child.  Now my perspective is changing.  What if our definition of "best" is no good?  What if the best for our children was suffering with grace and bringing joy in the midst struggles?  What if the best isn't free from hardship at all, but riddled with it? Maybe the best comes when they feel the joy and pain in life. 

It's still really hard to see Judah go through this, but he's such an amazing kid.  He was always smart and sweet, but the boy he is growing to be just blows me away.  He is wise and patient, he's brave and strong.  He just has this strength and depth from dealing with so much, and I'm so proud of him. Yes, it breaks my heart that he has this thorn to deal with, but I'm thankful for who he his and how God is using this pain to produce good in him.  

It's hard to give updates on Judah for some reason.  I get asked how he's doing, and I never know what to say.  It's just a weird question, because it's usually so mechanical.  "How are you doing?"  "Fine, thanks."  I always want to follow protocol with "fine, thanks."  If anyone has a book on what to say when the answer isn't "fine," I'd read it.  The truth is so much more complex than a passing question, ya know?  It's always awkward to answer with, "Well, today we went to the zoo, and Judah was so strong he walked through the whole thing while continuously seizing.  Despite barely being conscious for most of it, he was still inquisitive enough to make me read every informational sign there. He was so tired and hungry from all the seizures by the end, but I forgot the lunch I packed at home and that almost did the poor boy in.  When we finally got to a drive through to get him food, he could only have like one thing on the menu because he's on this crazy strict diet that may or may not be helping with his epilepsy.  Even though he didn't like his lunch, he sincerely thanked me for it with a huge smile on his face.  Later he had a drop seizure at the store that caused him to wail like a tornado siren for 20 minutes while the kind employees at Trader Joes threw stickers and frozen peas at him like they were life preservers on a crashing plane.  But then he amazingly stopped wailing because he was so excited and joyful to see a Hawkeye flag hanging on the wall.  Then we went to Joshua's work where my voice started cracking as I tried not to cry, and Judah sympathetically asked me what I was whining about.  And then tomorrow, we'll do it all again just praying Judah doesn't get another bruise or bloody nose, but knowing he will.  But we also know that he'll look up at us with tears in his eyes and tell us that it hurts, but he's brave. I feel like that's the story of his life right now: it hurts, but he's brave." So instead I just stand there stupidly for a few seconds and mutter something about still trying to figure out how to get these seizures under control. Anything but "fine" always feels kind of awkward, I don't know why.  I may not be good at communicating where we're at, but I know many of you deeply care for Judah and genuinely want to know how he's doing, so thank you for that.  

Thank you for all your support and prayers lately, we are so thankful.  If you think of it: this Thursday is International Epilepsy Day, I think it would be an awesome time for us all to pray for people around the world that have epilepsy.  

New Year, New Diagnosis

Happy New Year!  As soon as I had been unnecessarily honked at twice this morning, I remembered it was the new year.  New diets and having to go back to work/school today are making people grumpy!  Thankfully our van got a flat tire yesterday and our car wouldn't start this morning, so by the time I got on the road, I was too apathetic to care about all the crankies.  Dodged that bullet!

I have debated writing about this with myself for a few months now, but have come to a conclusion: I need to unload some weight.  Not just the New Year's dieting plans we all make, although that's on the docket too.  I'm talking about emotional weight.  I'm carrying around burdens that are too heavy for me.  We need people to walk with us, to pray with us.

This last year has been one of the craziest times in our lives.  I was working on my Master's degree, studying for the MCAT and applying and interviewing for medical school.  Joshua was working full time, maintaining the house, and wrangling two busy boys.  Judah and Asher both attended preschool as well as music lessons and gymnastics.  That was already hectic, and then Judah started having seizures again. They came back with a vengeance unfortunately.  We pursued many different avenues to try to figure out what was going on, and we have finally learned that he has Doose syndrome.  Joshua and I are both thankful to be able to put a name to what is happening to our sweet boy and the information that is coming alongside that, but are mourning what this could mean for him.  It is an 'intractable epilepsy' which means it's really hard to control the seizures with medicine.  It could spontaneously go away someday, or he could have it forever.  He's already started experiencing physical motor developmental delays, and those could become more profound. There's just so much we don't know. He's been having a few types of seizures, and they are all unpleasant for him.  The worst though is what is called a "drop seizure."  They usually only happen when he's sitting at the table for some reason, and they cause his head to slam violently on the table.  Can you imagine being only 4 years old and never know when or if you're going to face plant at full speed into your food?  We've had goose eggs and black eyes from how hard he hits the table.  I took him out to lunch today and forgot to bring his special padded place mat we made him.  He usually has his drop seizures when he first starts eating, so we hold him if we don't have the pad.  We had just sat down, so I hadn't gotten positioned to brace him yet.  He had a terrible drop seizure, and slammed face first into the table.  We both just wept there in the booth.  He deals with things a 4 year old should never have to.  He can't eat anything besides fat and protein to keep the seizures down and still they come.  Through it all he has had the most amazing spirit, but it's starting to affect him too.  We're now seeing fits of rage that are characteristic of children that face the uncertainty of when their next seizure will occur.  It's so hard to think about losing even a tiny bit of who he is, but we're facing losing so much more than that.  Today one minute Judah was telling me how there are 7 continents and the next minute he can't speak or move, his face goes devoid of everything and he begins to drool.  It's terrifying.

With all of that going on, we feel deflated.  I want to write a happy first update, but that's not where we are.  We are tired, sorrowful, and clinging to God.  Actually, I feel so deflated right now, I think I'm draped over Him as He goes about his business.

And so I'm resuming blogging because: writing down what is going on is a good way to process this all in itself, we want to keep our friends and family that are walking through this with us updated on what is going on, and honestly I want to chronicle this journey.  While there are some heart wrenching realities we are facing, we are at the same time witnessing abounding grace and beauty that only come during times of hardship.

We're asking our friends and family to be praying for us especially over the next couple of months.  We are facing some really hard decisions, and desperately need peace and wisdom.