Hi again!  Sorry for the inability to access this website for a few days.  My dear friends, the Arnolds, host this site as a ministry to our family and the server had some technical difficulties.  Dave Arnold's business is www.churchhub.com if you ever want someone fantastic to design a website for you - or your business!  He created this site and he is a neat Christian fellow. 

So we are in full "sleep training" mode at our house!  Thanks for all of your great ideas.  The two I took to heart were putting the boys to bed earlier (altho they were going to bed at 7:30 (casey) and 8 (cody).  But getting up at 5am still wasn't giving them enough sleep.  A great sleep book talks about how (although it's counter intuitive)...kids sleep longer when they go to bed earlier.  So we're trying that.  So far, both boys still rise at 5am but I think it takes awhile to create new habits.  The bummer is Don doesn't get home often until 7pm so that negates any time with the boys.  But we'll give it a shot. 

The other thing was a few of you mentioned leaving the boys in their sleep space even though they are awake - and not going to them to get them out of bed.  This is impossible with Cody because he can't be left alone.  He'll eye poke, bite himself, make himself throw up, etc.  But for Casey it is possible.  The two days I've tried it he simply screams non-stop - which he's always done when we try to get him to fall asleep on his own.  This morning he cried for 45 minutes in his playpen (Don and I both went in to let him know we hadn't abandoned him) and then he pooped out and fell asleep from 6-7:30am.  So I see that it can be done - IF I'm able and willing to let him cry it out.  I'm not a big fan of crying it out - and normally wouldn't - but we just can't do the 5am get-ups anymore.  Cody simply needs more sleep than that - especially since he doesn't nap anymore.  And Cody often can't fall asleep till 10pm so it really leaves him with a sleep deficit to get up at 5am.  So leaving Casey in his crib when he wakes up (with toys, a bottle and binkie) freed me up to go lay with Cody and bridge him back into sleep the few times he woke up from 5am on.  For Cody, it's just a fact of life that he will need help getting back to sleep whenever he stirs.  He simply isn't capable of putting himself back to sleep.  His body has no sense of self-regulation.  It has to do with his neurological problems - kids with neuro defects just don't sleep well.  They don't fall asleep easily and they can't stay asleep easily.  Their brains just don't talk to their bodies well.  So even though Cody is dead tired, he will try to crawl to the door and come out to the playroom.  All that to say - by letting Casey stay in bed and *hopefully* learn to put himself back to sleep in the early morning - it will at least allow me to go be with Cody and help him sleep a little later.  I, of course, won't get any more sleep past 5am!  But with Cody, Don and I have pretty much resigned ourselves to no sleep.  We have tried melatonin, but it never worked for Cody.  Our pediatrician suggested using benedryl on nights when Cody just can't fall asleep - he said many kids take it every single day for allergies and it can't cause any harm.  I just don't like the idea of drugging him to sleep.  But on nights when he's up till 10 or 11pm, we may give that a shot. 

Tomorrow is a big fun day for me.  I'm having 4 other moms from the area who have kids with infantile spasms over for lunch.  I'm calling it a "mommy hero" lunch. I have no agenda other than to try to serve these amazing women who, like me, are walking the road of seizures with their children.  It is a healing balm to talk to someone else who is in your shoes - and that's true for any trial we go through.  For moms with kids who have seizures, there is a particular isolation you feel because so few people know that horror on a daily basis.  So it will be nice for us 5 moms to come together and share our thoughts, fears, victories, and challenges.  I can't imagine being in better company - especially on mother's day weekend.  If I could, I'd fly them all to a spa somewhere and have them pampered (and me too!) for the weekend.  But alas, in lieu of that I will at least give them something to eat and time to be able to be real about what we're all facing.  I have big dreams -- and have prayed a lot over how the Lord could find a purpose for the pain of what we've been through with Cody.  I knew my life was pretty isolated - I can't get out much and I don't have much time to serve.  But I knew one thing I could do - I could take 2 hours and reach out to those who are going through seizures with their little ones.  I am praying about how God might expand this ministry...and I can't even envision how since I am so strapped for time.  But I'm sure He can find a way to make this ministry to other "seizures moms" bigger than my little lunch.  At the least I hope us moms can meet every other month - and hopefully we can expand our roster as we hear of more women in the area dealing with infantile spasms.  Perhaps there's a Bible Study in our future together?  Or who knows.  It doesn't have to be some "huge" thing....but I do want the experience I have with this illness to serve those who are just having their children diagnosed.  I've thought of having Children's neurology dept. just hand out a little card to any mom whose child has just been diagnosed with i.s. saying that I'm available for a chat or support if they desire it.  But again, having the time will always be my biggest obstacle.  Perhaps this will always just be us four moms - or perhaps they wont' even want to continue meeting!  But I know all I have to be is available for whatever God wants.  He'll figure out all the details.  Someday - when I'm out of the trenches of babies & toddlers and have a better grip on our life and the kids are older - I'd love to do more for other moms.  Maybe a "special needs" ministry from our church.  Or a "special needs" Bible Study.  Or a respite day for parents of kids with seizures.  I don't know.  But I'm trying to dream big.  For so long after Cody was diagnosed, I felt all my dreams die.  I felt like I'd been given a life sentence of pain and sorrow.  But as I emerge from that haze and am trying to begin living again...I am looking for ways to build new dreams.  So we'll see where that takes me.   

I've always been a big fan of pursuing dreams as far as you can.  When I was in college, I dreamed of working at a television station.  I got to do that as soon as I graduated.  That fueled a new dream of wanting to move to Los Angeles and try to make it as an actress.  I did that too.  (Obviously) that didn't work out since you've never seen me in a movie or TV show!  Although I have had many laughable small parts on soap operas (General Hospital, Young & Restless, Loving) and have done a bunch of commercials.  I was even the "Taco Time" girl!  Haha.  I have a pretty funny reel of bad TV I've done!  After hating Los Angeles and the acting lifestyle, I moved back to Seattle and decided the new revision of my dream was to try to do on-camera work as a reporter.  Instead of acting, I liked the idea of being myself on camera.  That dream came true and I was a TV reporter for years and years.  I got to interview celebrities, travel all over, sky dive, bungee jump, fly with the Blue Angels.  I even wound up anchoring the news! 

So my whole life, I've been a big dreamer.  All of my dreams didn't always come true, but it was the pursuit of them that mattered to me.  And it was interesting watching my dreams change shape and form over the years.  I'll never forget meeting Don and getting engaged.  I was still on TV and was fantasizing about the awesome life I'd have.  I'd still work - he'd rodeo - we'd have children and I'd "retire" till then were in school.  On our wedding day our theme was "let the fairytale begin" - that's what I even put on all of our thank you cards.  There was a photo of Don and I leaving the chapel surrounded by bubbles and applause and written above was "and they lived happily ever after." 

And here I sit 5 years later.  Making an entry on a website for my catastrophically ill baby boy.  My dream now consists of trying to eek out a couple of hours every other month to build some kind of ministry with other special needs moms.  My other dream is that one day I'll see my son healed, this side of Heaven.  Crazy how dreams change.  Crazy how you have to build dreams no matter what God allows in your life.  He promises us a future and a hope.  He promises abundant life.  It may not look like what we planned.  Or what we had once.  I struggle every day with finding a new dream.  And not hating that this is my life.  But with God's help, I search for His new path - a path that doesn't involve TV, rodeos, or a fairytale.  It involves, instead, making "beauty from ashes....strength from fear....gladness from mourning...peace from despair."  That's in the Bible somewhere.  And it's the supernatural transaction God promises.  He'll give us beauty for ashes.  Strength for fear.  Gladness for mourning.  Peace for despair.  I count on that.  And I nurture this little dream of mine that God will somehow redeem these years in the furnace of seizures and hospitals - and that He'll create something out of it that will help people - and glorify Him.  If not, what's the point?

love,

Shawna