| February, 2008 |
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Feb 1, 2008
Here is my latest attempt to keep Casey from scratching his cheek all night - hahahha. He looks like the Michelin Man! The recipe? Two hand towels and duct tape! Necessity breeds invention. I think it's working because his cheek is better today. He's such a trooper - he doesn't even mind. Fell right asleep with them on. Kind of stared at them for a bit, but didn't get them much of a second thought.
And this next picture is my dear friend Kerry who came over today to pamper me. She knew times have been tough and brought a tablecloth, ribbons, candles, lunch - and served me well. Then she gave me a foot massage! Now that's service!! As you can see, Casey liked the foot soak as much as I did!
Feb 6, 2008 Hi there! Wow - this week has been a whirlwind. Both boys have colds - which means lots of seizures, sleepless nights, snotty noses, screaming and such. Casey wakes us up screaming for a couple of hours - and just when we finally get back to sleep - Cody wakes up with a hacking coughing spell or huge seizure! Just when I was about to tear my hair out from even more sleep deprivation than we had prior to these colds --- I got the FANTASTIC NEWS! We were approved for emergency overnight respite by the state!!! What an answer to prayer - 8 hours a night for 2-3 months. I had to find the providers, the state pays them. They will stay overnight in Cody's room and attend to him so we can get some precious SLEEP! It took a lot of doing, but we got it! Our neurologist note helped a ton. Whew. It doesn't start until the week of the 18th, but it's a light at the end of a very dark tunnel! Casey woke up at 4:30am today so I'm blurry eyed. Cody followed promptly at 5am. The day is soooooooooo long when you get up at that hour. I had to laugh at myself - by 7am I had done a laundry list of things already - changed poopy diapers, fed both boys, read to both boys, put casey down for a nap, gave cody all his meds, sent out 4 emails to the school district, the list goes on and on. I kept singing out loud: "I am Mother, hear me roar!" If you're old like me, you remember the Helen Reddy song, "I am woman hear me roar." Yeah, I sang it to that tune but changed teh words. I'm embarrassed to say I actually saw Helen Reddy in concert back in "the day." Yikes. That dates me! That was back when Delta Dawn was a big hit. Don went to Oregon with Cody last weekend to visit his folks - and I got to spend some alone-time with Casey who is growing up SO fast! Right now he's sitting next to me in a high chair holding a Zwieback cracker in 1 hand and a sippy cup full of water in the other! He thinks he is SUCH a big boy! His cheek is mostly healed up. Another answer to prayer. We got lots of cuddle time over the weekend - we worked on crawling - it was great. That's our news for now - thanks for checking in! with love, Shawna Feb 10, 2008 Hi all - would you believe I tore a ligament in my foot last night? Of all the luck. I was in the E.R. till midnight. I fell down a stair - in too big a hurry to get the kids from those who were watching him because we were late. So I'm icing it every 2 hours and keeping it elevated. Poor Don has had to take up the slack this weekend. Our nanny is putting in more hours this week too. Good grief! That's it for now - I've got to try to hobble over to the stove and rustle up some dinner! love, Shawna Feb 11, 2008 Well my foot is feeling much better after 2 days of icing and elevating. What a drama. My night in the E.R. was interesting. A saturday night in the E.R. from 9 - midnight can only be described as "a circus." Don dropped me off and came back home with the boys - and I took a cab home. In between, I sat in a wheel chair in the waiting room while the "crazies" came in and out. Next to me was a teenager who'd eaten magic mushrooms. He kept falling asleep so they made him stand up. And he was standing inches away from me. And he kept teetering as he fell asleep - like a giant tree that had been cut and was waiting to "timmmmmmmmmber!" I waited for him to fall over on top of me. I could tell he was most sorry he'd eaten those shrooms. Oh, to be young and stupid. I finally got my turn and was thrilled to get the X-ray report that there were no broken bones. Until Dr. Applegate said, "well a severly torn ligament is worse than a break or a sprain." Well, wouldn'tchaknow.....just my luck. Don and I had tried to go out for a Valentines Day celebration at our church's Sweethearts dinner at a nice restaurant. It was a great evening until I tried to go down the fateful stairway on the outside of our church's Lodge. And that - was the end of the fun! But I have to say, less and less often do I go to what I call "the dark place" when bad stuff happens. Used to be, if something horrible happened, I'd immediately go to my "Thanks a lot, God!" place. I don't do it anymore. I think I've just realized that life is a series of horrible things happening in some way or another. Finish one horrible thing and there's another one waiting around the corner. I don't mean that in a macabre way - but in a realistic way - in a healthy way. The Bible's pretty clear that life is full of pain and sorrow. It's how we navigate through the pain and sorrow that matters. And it's about finding random joys and moments of laughter amidst the pain and sorrow. In that emergency room, I tried to practice the sacrifice of praise. Now, mind you, I was teetering on the brink of the "dark place" which is why I started trying to find things to be grateful for. I sat in the waiting room 2 hours. It took another 2 hours to get x-rayed & discharged. I had to take a taxi home and begin to figure out how and who would take care of my kids all this week. It was a '10' on my stress scale....especially the "how do I take care of my kids" part. Of course Cody's off school this whole week for mid-winter break. So I sat there in the E.R. thinking, "Shawna....you have to spin this somehow...you can't go down the dark path. So how can we do this? What good can there possibly be IN this?" As I looked for it, it showed itself as it always does. The attendant who was mopping the floors peered thru my room's curtain and said, "I've never met you or seen you before but I know lots about you!" I appreciated his bubbly, goofy-ness in the midst of this depressing scenario. "Is that right?" I replied with a sly grin. "WHAT is it that you think you know, sir?" He put his hands on his forehead as if he was reading my mind "I know that your right foot is cold....and I know you came in with two socks and now you only have one sock!" I looked down and then laughed. He held up my missing sock which I had taken off my hurt foot and left on the floor of the waiting room. "YOU ARE PSYCHIC! YOU SHOULD HAVE YOUR OWN TV PROGRAM" I said. He laughed and threw the sock my way. Then the Dr. came in - an old guy - had to be in his late 60's - and he simply stopped with a huge grin, said "APPLETON HERE" and said, "ARE YOU THE YOUNG LADY WHO HAD SOME SILLY FALL?" "guilty" I said. "Look, I have a disabled child who I carry everywhere plus a baby who I carry everywhere. PLEASE NOTICE THE LOOK OF DESPERATION ON MY FACE AS I TELL YOU IIIIIIIIII HHHHHHHAAAAAAAAVVVVVVVVVVVEEEEEEEEEEE TOOOOOOOOOOO BBBBBBBBBBEEEEEEEEEEE AAAABBBBBBLLLLLLLLEEEEEE TOOOOOOOOOO WWWWWWWWAAAAAAAAAAAAALLLLLLLLLLLKKKKKKKKKKKK," I screamed. He laughed. He asked me some very thoughtful questions about my disabled son - even asked his name. I could tell he felt bad and he said "we'll get you walkin, promise!" Suddenly I felt better. I liked his jaunty attitude and big cheesy smile. My spirits continued to lighten. I had a bad migraine from the pain in my foot (go figure) so I yelled out "is anyone out there?" A grumpy deep voiced man said "yes." I said - "do you work here?" I heard "yes." "I have a headache." "I'm sorry." "I need drugs." "I gotcha covered" and he came in with headache help. Now I realize I'm paying through the nose for these services and that these people are being paid to be nice to me. But I decided to be grateful for their cheerful care. I praised the Lord for having health insurance to pay for this debacle. I praised the Lord that this wasn't something more serious that I was admitted for. For a husband who immediately became a rock and pitched in. And a husband who ran out to the taxi as it pulled up in our driveway at midnight and pretty much carried me inside. He had a huge grin (theme of the night) and told me to lay down on the couch because I needed to ice my foot. Don is great in a crisis - that has been proven many times over in our marriage. I love the way he takes charge and always stays positive and level headed. I'm the opposite. I panic, shout expletives, claim the worst, and freak out. He put a bag of frozen spinich on my foot and put it on top of a bunch of pillows and then he put in a video for us to watch. "you don't have to stay up with me - it's 1am! Go to bed! The boys will be up at 6am!!!" "I want to. You're my wife. You don't feel good." So we watched an old episode of Grey's Anatomy together (my guilty pleasure TV favorite). Then he spent the next day doing dishes, taking both boys to church so I could have a break, helping me walk and ice my foot - he was awesome. He stayed home from work till 9am today and took Cody to school (which I think he secretely loved....he would be a good Mr. Mom). So yes....I have much to be grateful for. I have friends pitching in all week. Cody's part-time nanny said she'd pick up the slack time. I'm learning so much about this crazy life we lead. It's all about perspective. I could have sat there in the E.R. (like I was tempted to do) and feel like I had been jinxed again - why me? - life sucks. Or I could joke around - laugh about my bad luck - and see the beauty in the nice people and my servant-hearted husband and friends. Now mind you, this torn ligament threw my life into a tailspin. I literally can't take care of my own kids. I felt my world crashing around me when I fell - my words were instantly "I can't be hurt! I have to take care of the kids. I CAN'T BE HURT!" So this was no small thing to deal with. And it still isn't. I'm hobbling around in a fair amount of pain. This week is nuts having to scramble for help from people who are already probably burned out helping me. It'll cost me a bunch more in nanny money which we don't have. Don was extra-worked. Satan knew he could get me with this one. But for ONCE, I didn't let him steal my mojo. I started to praise and be grateful from the beginning and it's still keeping me afloat. For me, this was a big victory. My sick, fleshy, feelings-driven personality didn't win. Now THAT'S a miracle! Okay, enough about my injury. Time to go to bed. Cody's had 2 horrible seizures today plus dozens of little ones and there are probably more to come in the night. Gotta sleep while you can. We'd love prayer for his schooling situation - I won't go into detail except to say that we are trying to change his placement and would love prayer for him. He's lost all of his picture communication skills since starting public school and we need to figure out what to do. He's regressing, he's more stressed because of it, his negative behaviors (like eye poking especially) are flaring. Not a great time for him. Thanks much - have a good Tuesday! Shawna Feb 13, 2008 Hi all, I'm much more mobile today - whew. Compared to what the E.R. Doc told me to expect, this has been so much better. I can walk around pretty well with this aircast on - even carry the baby - and even carry Cody! I think God may have given me a boost in the "foot healing" department. Seriously. The Doc, ("Appleton, here") said it was a bad torn ligament - but this recovery has been quite more speedy than he anticipated. There's a huge blue bruise where my toes used to be - but that's okay. So..............what did I do tonight as my right foot healed? I leaned down and grabbed the gigantic box of dish detergent out of the cupboard, and proceeded to drop it on my left foot! Right on the toe - and right on the pointy edge of the box. I thought I'd broken it for awhile - ever get that pain so quick and severe that you think you're going to throw up? yeah - that kind. But it's getting better finally. WHAT IS MY DEAL??????????? I better stay away from moving vehicles and not walk under any ladders or I'll kill myself. Good seizure day today. Altho Cody is having such troubles sleeping. Last night he stayed up till 11:30pm, then got up at 2:30am, 3am, 4am.....probably some medicine side effect that's surfacing out of the blue. And he can't nap during the day. He tried so hard - lays there in his bed and closes his eyes for so long - but just can't get to sleep. Poor thing. His eye poking it totally out of control. He tried to make himself throw up a dozen times today. He's regressed so much in school and now that he's not understanding how to communicate with his PECS system, his negative behaviors seem to escalate more every day. He's off school for mid-winter break and the down-time doesn't do him any favors. I am still working hard to advocate for him in the school system - please pray for me. It is stressful and difficult to say the least. And I see my son regressing before my eyes. It is heart breaking. Please pray for him to have access to the very best education for him. Whatever that means. This 3rd year of his life is so critical - he's still able to build new neuropathways and turn around some of his developmental delay. But not if he keeps regressing so. I'm learning more than I ever wanted to know about "special needs law" and advocating. My plate was full to the brim before school issues came along - now I am stretched beyond what I thought I could be. Yet -- God is giving me strength for the day. I keep waiting for life to get easier, and it doesn't. As my friend reminded me, when you have a disabled or special needs child - this is what you get. A lifetime of fighting. A lifetime of battles. Fighting Dr's. Fighting the school system. Fighting people's perceptions and judgements. Fighting for sleep, for your marriage. Fighting the financial drain of medical bills. Fighting the state to get respite or benefits. She helped me remember that you can't die for each fight. You have to commit to the marathon. Every fight can't be all or nothing. Every separate battle can't take the life out of me. It helped me put things in perspective. I have to breathe. I have to rest. I have to ask for help. Mostly, I have to allow the Lord to carry this burden because I can't. But turning it over to Him - ah - that's the tough part. Cuz then I have to trust Him with it! And what if He doesn't do things my way? What if things don't go my way? Then what? Isn't that why we all hang on to stuff? Because to hand it over to Him would mean *maybe* it won't go the way we want it to? *Maybe* we'll have to settle for what He wants? Yet -- isn't what He wants supposed to be what we want? I have it so backward. I want God to get in line with my desires and what I KNOW is right. He's probably waiting for the same. So until one of us gives in (gee, wonder who that will be?) it's a tug of war - an arm wrestling match. And to quote a bad church billboard, "when God seems distant........guess who moved?" I keep saying, "come on, God, let's go! Make this mountain move! You can't want THIS! This is horrible! THIS can't be Your will!" All the while I'm making my phone calls, reading my important books, making lists of things to do. And He's probably just saying, "Get out of My way, Shawna! I'm trying to do something here and your ceaseless striving is circumventing it!" So often, when we give something over to Him we expect it to change. But often it doesn't. There's the rub. The circumstance doesn't change - but we do. And that's His business. Making us holy. It's the old adage about the grain of sand in the oyster. With enough pressure and irritation, the oyster turns that grain of sand into a pearl. Without it, it would be a crusty dusty speck of sand. With the adversity - it becomes a gem. There comes a time with a child like Cody where you come to that crossroads - "he's not getting any better." You grapple with that question. You ask where God is. It reminds me of a friend who has a child much like Cody - a challenge in so many ways. Her counselor said, "how do you do it? How do you manage this life of yours? How do you survive when your child never changes?" Her answer was............"she's not the one that needs the changing.......I am." love, Shawna Feb 18, 2008 Hi there - Mondays are hard, aren't they!? Especially after such a beautiful Northwest weekend. I went to my frend Paula's in Stanwood this weekend. She has a farm and 2 Bearnese Mountain Dogs. I'm sure I misspelled that! I took Casey - just to get out of the house and the routine for a day. Don stayed home with Cody. She gave me a hair foil, rubbed my gimpy foot with linament, bought me a People magazine (the sign of a true friend who really knows me!) I even got to watch cable TV - and got in a half hour of E! "Hollywoods Biggest Meltdowns" which kept me entertained. Thanks, Paula - for the yummy salmon dinner, the yummy breakfast, the cowboy caviar, and for going shopping with me and holdingg Casey the whole time so I could shop! You are loved - I can't believe you gave up your nice-weather weekend to serve me. Casey's cheek is "back." Went to the dermatologist for the 10th time today - it is shiny red and wet. It had healed almost completely. So I'm back to the night time vigil of keeping his hands away from his face. Ugh. Speaking of night time - Cody was up until 3:30am last night! Thank heaven my mom was in town and stayed up with him. Don slept in the nursery (no, not in the crib....on a mattress on the floor!) and I slept with Casey and intermittently came out to check on Cody. He just couldn't/wouldn't sleep. He finally slept from 3:30am - 7am. Then got up and no nap all day. He hit his head during a fall while I was at Paulas and got a huge lump on his forehead and that's all it takes to induce a weekend of seizures. He had 4 horrible ones sunday and 3 today. So I think that's what kept him up last night. Poor kid. I feel so sorry for him. Thankfully our overnight respite starts 3 nights a week next week. And in the meantime mom volunteered to stay up with him a few days this week. Poor Cody's also just a circus of negative behaviors. Friday alone he tried to make himself throw up over 50 times! Eye poking is out of control. He had to wear arm restraints all day which is just a bad deal. But I had to cook, go to the bathroom, etc. and he literally can't be left alone without them on or he will hurt his eyes or throw up all over the carpet. I ran to the bedroom when Casey was crying during a nap and didn't put the restraints on, and there were two huge pools of vomit on the floor when I returned - covering his stuffed animals, toys, etc. GROSS. Have you heard of a book called "The Shack?" It's been recommended to me by at least 5 people now so I bought it but haven't started it yet. I can't wait, tho! I'm still in the midst of re-reading "When I Lay My Isaac Down." It's about coping with loss. Here are a few of my favorite exerpts so far. The author has recently gone through a terrible tragedy involving her son. ---------------------------------------- "I find myself angry, often hurt, always broken - but the bottom line of my heart is this: Lord, where would I go if I turned away from You? If I didn't have You, I would have nothing. I have nowhere to turn, so while I'm pouding Your chest with my hurt, pain and anger, please know that I am still facing You, still leaning into the warmth of Your embrace, not sure I can trust You, but knowing You are all I have. If I left You, I would be completely aimless and lost. So while I feel devastated by what You have allowed to happen, I still cannot resist pressing into the comfort of Your strong arms. I am angry that I am not resisting You more, because I know You could have stopped this thing from happening - but I have nowhere else to go." ------------------------------------------- "We recognized that everything trivial was just that - trivial. Spilling a full cup of coffe on white carpeting was not a big deal. Running out of ink in the printer when an important letter had to be in the mail immediately was not a huge issue. The great debate over the new flooirng in the church sanctuary was not a matter worthy of gigantic amounts of emotional energy. compared to the "elephant" in our lives, everything else was less significant. It felt good to realize that "sweating the small stuff" was a ridiculous waste of time and energy. Having a measuring stick in our lives that helped us understand the difference between what was inconsequential and what was important proved to be freeing." -------------------------------------------- "My son is my personal "Isaac." God seemed to be asking me to lay down my "claim" to him in complete trust and submission, even though everything in my mother's heart was screaming, "there must be something I can do to spare my son, to spare my own heart this crushing grief! This can't be happening" But it was happening. And my own heart's desires were what I was being asked to sacrifice on the altar. I also recognized that I had a large amount of personal pride. High expections for my child's future, natural desires to have a "normal" family with holiday reuniions that included grandchildren opening presents around our Christmas tree. My "Isaac" was also a big pile of expectations that suddenly weren't going to materialize. Would I honor God by continuing to love and trust Him in these utterly unthinkable circumstances, or would I spend my days trying to direct and outcome that was so clearly beyond my control? In Radically Obedient, Radically Blessed, Lysa TerKeurst writes: No One understands the concept of offering it all to God better than Abraham...when God commanded Abraham to lay his only son on the altar...I am sure Abraham fully expected to plunge the dagger through Isaac. It would be an end...the death of a dream. Yet, Abraham was willing to give up the son he loved to the God who loved hm more, and God blessed him....Abraham walked away having experienced God in a way few ever do. God wants to know if we're willing to give up what we love to Him who loves us more. He desires for us to open our fists and trust Him with absolutely everything. The key is to fully engage our hearts in understanding "The God who loves us more." I kept wondering, the God who loves us more than WHAT?" It took me awhile to speak the answer out loud. He's the God who loves us more than we love our Isaac. Slowly it dawned on me that one of my initial steps in making a heart sacrifice was to internalize the belief that God loves me even more than I love my son. The high value of our Isaac is what makes the sacrifice so demanding, because we don't know ahead of time if we'll get our Isaac back. He lets me decide if I will make laying my Isaac on the altar an act of worship, where I lift up my heart in total trust in Him and release my grip on the object of my sacrifice. ---------------------------------------------- (Shawna back now) - I just LOVE these passages. Especially the last one. Releasing my grip on Cody - what a concept. Believing that God loves Cody more than do? Unthinkable to this pea brain of mine. Believing God loves me more than I love Cody? Impossible. Yet all true. And all the key to surviving this without going crazy because I can't fix it.
love, Shawna Feb 22, 2008 I can't believe how this week has flown. My mom was here to visit - which always is nice cuz she sleeps with Cody giving Don a full night's rest! Course poor mom is up with him till all hours and then back up at 6am when he wakes! Yesterday Cody went back to school after almost a 2 week break. Boy he had a hard time here at home. He needs so much stimulation daily it's hard to keep him from going nuts when he's at home all day. I'm still a bit gimpy and still in my "air cast." But I'm so grateful I've been up and walking from the day after I fell! Poor Casey - he is in that attachment mode. The minute he turned 7 months, he would not let me put him down. He won't go to anyone else. It's quite the new drama. I love it that he's so enamored by me - but at the same time it is exhausting! I used to be able to put him in his exersaucer to play for a bit while I answered emails or cooked - now he'll have none of it. Still has the gooey red cheek - I fully expect it will still be there when he's 18! Still the most stubborn case of eczema the Dr.'s ever seen! Every single time I've gone off the beaten path and used a naturopathic remedy - or some other recommended "sure thing" that someone emails me about, it seems to irritate it even more. So I keep going back to the medicated lotions the Dr. gives me - at least it goes away for awhile - even tho it always comes back. I use all perfume and chemical free detergents and bath products. I can't trace it to any specific allergy. All his other eczema patches go away with little or no effort - but this one just won't stay gone! I know it's weird to pray for an eczema patch, but I can't tell you how frustrating it is to wake up all night pushing his hands away from his face. He won't sleep swaddled or with gloves on. I pinned his arm to his side and that wakes him up. I even put the michelan man towels around his arms with duct tape but that keeps him awake too. Besides, all he has to do is scratch his cheek against the sheets or blanket to irritate if his arms are confined. It's driving me bonkers. All that to say, if you think of it, pray for this little raw red patch, would you?
Poor Cody had 3 humongous seizures within 1 hour today. I think they were the worst I've ever seen - full on screaming and wailing, turning blue, eyes rolled back in his head, lasting what seemed like forever. He is conked out as I write this - what a trooper. Makes the eczema issue seem like a walk in the park! Our overnight respite starts next week!!!! YAHOO! Oh boy do we need it! That's my good news for the week. Cody's part time nanny, Shoshannah is taking the night shift. She is a brave soul! Those youngsters - they have way more energy than us old folks! Boy did I find a gem in her - the boys love her and she loves them. She's always on time. She reminds me to give Cody his meds. She takes Cody on fun outings. She bundles up Casey and takes him outside to look at the tall trees and flowers. And best of all, I actually like having her around the house! She's good company. She's 18 so I've taught her some of "my generations" standards - like I introduced her to the joys of "Everybody Wang Chung tonight" as well as "Raspberry Beret." I told her there is indeed a "Grease 2" movie. And she gives me cool CD's like the theme songs from Grey's Anatomy so I'm hip and happening. And her mom treats us to the yummiest soup, muffins, Valentine cookies. Their family has sent us a blessing in Shoshannah. That's for sure. And we tell her so every day!
Here's a picture of how I start my day every day - both crazies in side-by-side high chairs! Tons o' fun at 6am!
Feb 25, 2008 Poor Cody's had some whopper seizures lately. This is the 2nd day this week we've had to use diastat (rescue med.) Today he had the best day too - he made it all the way through school (8:30a-2:30p) and when he got home he was SO smiley, alert, attentive - made great eye contact. I was in the BEST mood seeing him so giggly. Then at Fred Meyer - BOOM - HUUUUGE seizure. Brought him home and another one hit. Then one more. It is so disheartening when he's having such a good day and these seizures come along and rob him of it. It makes me MAD. He is passed out. Casey, in the meantime, is sitting next to me in his highchair with a teething cookie in one hand and a cracker in the other. He is SO excited when he gets praise that he takes a bite and looks immediately to me to hear "GOOD JOB BIG BOY!" Then he takes a drink from his sippy cup (which gets an even bigger reaction!) and he instantly looks to me for the "WAY TO GO BUDDY!" He BEAMS with any shred of praise or affirmation. He's so darn cute it breaks my heart! Our overnight respite started 3 days this week - Cody's nanny Shoshannah is doing it. Last night was miserable. Because Cody had diastat at 6pm, he got up at 1:30am and then again at 5am. We were up all night. I'm not sure this is what she bargained for - NO sleep! We are both zombies sitting here at 8am. She is such a good sport. That's our news for now - happy Wednesday! Shawna
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