| April 2007 "New Doctors and a New Home" |
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Wouldntchaknow...we finally get a weekend to get stuff accomplished...and poor little Code-man gets sick. We had our huge "to do" list that has gone by the wayside in favor of caring for the sick one. He woke up with a 102 degree fever and hasn't shaken it much, even with steady doses of motrin & tylenol. Of course, his seizures have spiked as a result. We high tailed it into the Dr. today (Sunday) and they checked him out and said his ear was a little infected - then they brought in the dreaded cathetar!!!! Oh my word, the horror. Poor cody got an enema courtesy of the gastro Dr.'s orders this morning (constipation issues) and a catheter this afternoon. He just can't catch a break. He screamed his way thru the cathetar but they did get what they needed to rule out a urinary tract infection and other stuff too. So they don't know what's wrong with him - just told us to try to keep the fever down and come back tomorrow if he gets any worse. Ugh. So it's been a vigil trying to keep him cool with wet towels, cold juice, meds....and he won't sleep so we are walking zombies. Just another day at the Graves house! haha. Sometimes I wonder why we ever bother to come up with a "plan" (i.e....install the clothes dryer, do laundry, fix the drawers, put my new Ikea desk together, etc.) God must laugh when he sees our "to do" list. Life is always throwing us curves and keeping us jumping. You'd think we'd be used to it by now but alas, we're not. I still complain. Pretty much non-stop. haha. Don and I are a good team, and luckily he's the kind of husband who takes his shifts with Cody when he's sick. He gives medicines, changes diapers, gives baths, and he even got to administer the ever-disgusting enema. Well, I was on "the other end" or "the good end" as Don refers to it. We've had to give enough enemas in Cody's short life that we have quite the system. We cut two holes in a hefty bag and stick his legs through...then off we go! Sorry to be graphic, but that's life with a child like Cody. Somehow Don and I muddle through these times...making bad jokes...falling asleep sitting up...searching for chocolate....today we even made a mad dash to Burgermaster after the Dr. appt. to grab a quick burger & shake to assuage our stress and sleep deprivation. Best burgers ever! From what I hear from other moms of special needs kids, I have it really good - many husbands just check out - or at best don't participate much. But Don has been 100% involved and an equal partner from day 1. For that I am grateful. I pray I don't get whatever Cody's got - since it's not so great for a pregnant person to have a high fever. That's life on our little acre today - hope your day has gone a smidgen better! If not, let me know and I'll be praying for you! :) Shawna April 3 We are fever free! Yesterday was a MUCH better day than the weekend. That fever came and left over the weekend, thankfully, leaving no residual trail of symptoms - a mystery what it was all about. But I don't seem to have caught it yet so that's dandy! Yesterday was pure bliss - Cody took a 4 HOUR NAP! And so did I! That is the first time in months I've allowed myself to lay down when he does - there's just been too much to do. But after the weekend of craziness with his being sick and us not getting any sleep - I just had to get some rest. I was heavenly. It's very rare that he takes that long a nap - usually they're 2 hours at most - so I think he was played out from the weekend. Course my nap came back to bite me last night when I tried to go to bed. I have been an insomniac my whole life - and if I nap even for a 1/2 hour during the day - it's impossible for me to sleep at night. So I don't think I fell asleep till midnight last night - which begins the "no sleep" cycle all over again. :) Just wait till baby #2 comes - my posts about no sleep will probably be written in hyroglyphics from my fingers falling off the keyboard! But we press on. Each morning Cody has the exact same routine - it is so cute. He rolls around for about 1/2 hour and I pull him up into bed with me (he sleeps in a giant play yard on top of a mattress on the floor.) Then he snuggles for about 15 minutes with me and touches my face, wraps his hands around my neck, smiles at me....makes little cooing sounds and giggles. Then BOOM - he is standing up on the bed. That instant transition is a tough one! He goes from zero to 90 miles an hour in a heartbeat! I put him down on the floor and he makes a beeline - every single day - for his high chair in the kitchen for breakfast. He finds it, turn to me and puts his arms up - and I scoop him up and put him in. Then he gets to dine on the breakfast delicacy of the day, which today was a 1/2 a banana, a protein drink, and 1/2 a carrot/zucchini muffin. As he's being weaned off this drug, his appetite is getting a little more normal, but he's still voracious most of the time. So I try to do breakfast in 2 shifts. Sadly, he starts his "regurgitating" frenzy after about 5 bites...and as I do more research on "rumination syndrome" I really think that at this point, it's just become a habit for him. I think a life long reflux issue created a habit of bringing food back up - and his stomach is just trained to do it. I told the Dr. it seems to happen "to" him rather than him creating it for some reason. The Dr. said that often happens over time...it becomes 2nd nature and the stomach develops almost a "tic" toward it. He described people with facial tics who don't really even know they're doing it - and don't necessarily want to do it - but it just "happens." We could sure use prayer for this problem. God is good to us - and Cody recovering so quickly from his bug has been a huge blessing. Yesterday he only had 1 small seizure so it seems those are back in line as well. We look forward to this Easter season - as God continues to reveal Himself to us through this journey with seizures and their attending difficulties. He is risen - and that gives us fresh hope daily. His fingerprints are on our lives...even in the difficult times. His touch is evident. Love to you all! Shawna April 5 Hi everyone! So is it just me, or is Sanjaya really starting to get creepy? For those who don't watch American Idol, that won't make sense. For those who do, it will make instant sense. He just grosses me out. I'm so sad Chris Sligh (or "mushroom head" as I preferred to call him) is gone. Boo hoo. He was awesome. I don't really have a fave among the rest. Altho Jordin is really starting to stand out to me. She's fresh, young, poised, and funky. So I may cast my vote for her. Cody is finally completely off tranxene (a tranquilizing drug) so his only remaining drug is Trileptol. He's seeming to perk up even more now that the tranxene is out of his system. We used it to bridge him through a bad seizure time about a month ago and it takes about a month to wean him off it once you introduce it. Quite a process. Today and yesterday he only had 1 seizure each day - what a blessing that is. I pray for more of the same! He's had great speech and physical/occupational therapy sessions this week too. He's using a spoon once a day (that's all I can take of flinging cheerios and applesauce!) He's got his pincer grasp down. So things are chugging along. I had my OB appt. today and he said things are chugging along there too! I have one more ultrasound in 2 weeks because the placenta was laying low last time. But all looks well so far! I keep humming my favorite Easter song. My favorite version is by Keith Green. Here are the lyrics to "The Easter Song" - I hope it gives you a fresh take on Easter this season! THE RESURRECTION SONG
Hear the bells ringing, they're singing
The angel up on the tombstone
Joy to the word,
Hear the bells ringing, they're singing
The angels, they all surround us and love, Shawna April 6 Happy Friday to you! It was SOOOO beautiful outside today. Sunny sunny sunny. Got quite hot in our new house - my first call monday will be for an air conditioning bid. haha. I'm actually serious. I can't live without it. Esp. being pregnant! Yesterday was so nice - my friend Gail came over for 3 whole hours and fed Cody plus took him for a long stroller walk while I took a long shower! I also got some phone calls made and some unpacking done! Thank you Gail!!!!! You are a life saver! Cody's had some horrible seizures overnight and today - I think from the final removal of the tranqulizer. I hope he gets back down to 1 seizure a day again - that was heavenly for us. Cody has surgery scheduled for Monday - an endoscopy. That's where they take a scope and put it thru his throat and into his esophagus, stomach and intestine. They look for any areas of damage from all his gastro issues. They also look for any structural problems that may be contributing to his constant vomiting. And they take biopsies of each area. Not looking forward to this at all! He's been sedated many many times - but never had a surgery before. Please pray for safety and success if you find the time, and for my nerves that day. Today we had class at his special needs school which is always a treat. I took a bunch of photos that I wanted to share but alas, our camera cable is still packed. As is much of everything else. Sigh. He hung out with his buddy Parker who is an absolute doll. There was a big table full of dirt for the kids to play in - a sensory activity. I took Cody over reluctantly - and as I expected - his hands were too lightening quick and he stuck an entire handfull in his mouth. Playing with trays of shaving cream was the other sensory exercise and yes - same thing. So for breakfast he had dirt and shaving cream. Probably not so nutritious, but lots of fun. :) Every time I'm around these other moms, I am better for it. In the midst of all they go through, Parker's mom offered to come over and babysit cody so I could take a break since I'm so pregnant. As if she doesn't have her hands full herself! But those are the caliber of people who are our peer group now. Moms who realize the toll this takes because they're living it out themselves. It's humbling. Life gets so myopic doesn't it?!? It's so easy to get wrapped up in our struggles and feel that we just don't have the time or energy to give away -- we're just going through too much ourselves. Parker's mom reminded me that going outside of ourselves isn't just a blessing to others...it's healthy! It gets our eyes off ourselves and our "plight" and onto others. I desire to live an "other" focused life - it's just so hard with the demands of taking care of Cody. But I was inspired today to find ways - even small ways - to serve others outside of my own family. One way I try to do this is to pray for everyone who visits this site. If you are reading this, know that I have prayed for you today. If you are on this site because your child has seizures, I have prayed for you with tears flowing. I understand your pain. If you are on this site because you check in regularly just to keep up to date on Cody...I am so blessed by your compassion and your "other" centerdness. I pray that I can be there for you in your time of need as well. Blessings to all of you this Easter! Shawna April 9 Yay - surgery is over! Cody and I just came home from Children's Hospital. Poor thing couldn't eat anything after 7pm yesterday so he was starving - only to arrive for an 11:15 surgery and have it postponed an hour! He was ravenous! We met with the anesthesiaologist, Dr., nurses, etc...put him in a little tiny hospital gown with bugs bunnies on it, started an I.V., and then I walked him down to the operating room where we said goodbye amidst my blubbering. They had me lay him down on the stretcher and hold him while they put on the face mask to put him to sleep. Horrible. Walking away from that room was so tough. Luckily my friend Kerry was waiting for me to scoop me up and dry my tears. She's been there herself with a child with leukemia. What a blessing she was to show up and see me through such a cruddy time. Luckily, the nurse popped back in later and said it all went well and he was in recovery! The Dr. told me that the procedure went off without a hitch - and all the biopsies (esophagus, stomach, intestine) were taken without incident. He said all his organs look perfect, no sign of reflux damage and no structural problems. That was a relief. With all his throwing up/reflux issues I half expected them to say his insides were in knots and needed surgery again! So....the good news is that this "rumination syndrome" is the only gastro issue we have to deal with. No hernias, no tumors, etc. Then they brought Cody in wrapped in a blanket sucking on his binkie where he snuggle in my arms and was monitored for quite awhile. After a bit he finally got apple juice and crackers and once he got those down, we were free to go home. He is doing great - no sign of pain - eating like a madman. It's the end of a day that has been very troubling. Last night and this morning, on top of having to go in for surgery, Don and I noticed a weird head tilting thing he was doing. He's be walking along, and his head would shrug down to his left shoulder. He'd do it over and over - then to the right occasionally. It looked just like the old infantile spasms...only he didn't trance out...he was walking fine and reaching out to play with toys while doing it. Still, we grabbed the camera and video taped them so I can send to the neurologist. No doubt we're looking at another dreaded overnight EEG to see if this is indeed seizure activity. Don and I saw him do this head thing a few times and just looked at each other - without saying a word - yet saying everything. Just when these seizures had gotten down to 1-3 a day (and small ones usually) - has another seizure type reared it's ugly head? Oh, I pray it isn't so. That means more hospital stays, new drugs, new side effects....and sliding backward when we were finally moving forward. In addition to those, he's had 6 fairly large seizures today which is highly unusual...I can only hope it's from the stress of the day. On a brighter note, we had a fantastic Easter - I hope you did too! Church was amazing as always and I blubbered my way through it. Each soloist was a good friend - and when my 14 year old buddy Austen got up at the end and sang, I lost it. Then we went to our friends house where 30 people gathered to continue celebrating the resurrection with a meal, an easter egg hunt, and lots of good hang time. Cody was doted on, loved, and at the end, he was prayed over for his surgery today. I just can't imagine a better holiday. I even got to hear one of my favorite songs at church, "My Redeemer Lives":
Who taught the sun where to stand in the morning?
love, Shawna April 12 Whew - so far - no more weird head bobs to the left or right since this past Sun/Mon! I am so relieved. I pray it was just a stress reaction to the surgery or something. And Cody's seizures are back down to 1-2 a day - small ones. So for now, I take a breath and say, "thank you God!" And thanks to those who found time to pray. I know our prayers on Cody's behalf are instrumental in his life. You'll never know how grateful we are to those who take time to lift him up. Post surgery has been just dandy - no complications. He's back to his little ol' self. In fact a friend took him out shopping (thank you Gail!) so I could do some housecleaning! He loves riding around in shopping carts and eating cheerios---looking and touching all the stuff in the stores. Yesterday I took him to my sisters (about 1.5 hours away) where I dropped him off and went to get a pregnancy massage! ahhhhhhh. SO needed and so nice. Then he spent the rest of the day with his cousins, aunt and grandma - even took a trip to the park! So that was nice. I'm frantically looking for a nanny for the rest of april/may since I'm barely able to lift Cody at this point in the pregnancy. For those who have been pregnant before, you'll identify with the ligament/pelvic bone pain you get around the 7 month mark. Well, when you lift 40 lbs over and over every day...it exacerbates it times a hundred! So it's becoming almost impossible to care for him full time. I pray the right person will come along - I've advertised in a couple of places and asked everyone I know so we'll see. I had a nice chat with my dear friend Kerry who accompanied me to the hospital for Cody's surgery - she and I talked about suffering. She knows it well as she lost her husband to cancer at nearly the same time that her young son was diagnosed with cancer. We talked about being a Christian and coming to terms with suffering....and how life sometimes seems to be a series of endless losses. She sent me these words from Thomas a'Kempis (who wrote them in 1427 AD! Proving there is nothing new under the sun!) I hope they encourage you as they have me. "Christ's whole life was a cross and martyrdom, and yet you seek rest and joy for yourself?" "You are twice deceived if you expect anything other than suffering and tribulation, for this whole mortal life is full of adversities and marked on every side with crosses. But the more the flesh is weakened by affliction, so much more is the spirit strengthened by inward grace." "Oh that you were worthy to suffer something for the name of Jesus. For the more we die to ourselves, the more we begin to live unto God." These quotes don't depress me...they inspire me. They remind me that when I chose to become a Christian - I thought God was kind of a Santa Claus whose job it was to "bless me" and make me happy. Many many years later, my walk with the Lord has changed and become more mature...also more truthful. It helps me so much to be reminded that we will never be content in this world - that suffering and trials are built into life because the world is imperfect. Heaven is the only place where nothing bad happens - no suffering, no pain. Good things happen and bad things happen on this planet, but God works ALL things for good acc. to the Bible. So in these crushing trials - the seizures, the surgeries, the deaths, the lonliness we all go through - He promises to redeem them for His good IF we let Him. Therefore it is my job to search for the ways He might be redeeming this pain for His glory. He will. It's a fact. He works ALL things for good. That doesn't change the fact that there is extreme pain...but it at least gives it a purpose. My friend Kerry chooses to allow God to redeem her excruciating trials in life by going to the hospital and serving those who also have suffering children, like me. Her trials gave her more compassion, more empathy, and awoke in her a desire to come alongside those who have loved ones who are suffering physically. What a beautiful redemption of what she's been through. I hope to find ways to redeem this furnace we've been in with Cody. I can't say I do much now...and it's a good excuse to think that we're too overwhelmed to "serve" others. But I don't want my tears to be wasted - I want God to start redeeming this NOW! :) Thankfully people like Kerry choose to find the ways God can work suffering for good in their lives. And because of that, I was not alone during Cody's surgery. I was sitting next to someone who had walked the road before me - who had left a beloved child on the operating table - left him to a team of people in blue scrubs who she'd never met. She too had come back to the waiting room in tears. And hoped and prayed that things would go smoothly. And because she's been there, she chose to be there for me. That kind of sacrifice makes the above quote true: "But the more the flesh is weakened by affliction, so much more is the spirit strengthened by inward grace." The weaker we become as a result of suffering, the more Jesus is manifested in us because we must draw on Him completely for strength. And that inward grace causes us to grow in character, compassion, and service to others. It's a beautiful thing. A hard thing, but beautiful nonetheless. love, Shawna April 14 Hi there! We've had a couple of nice days. Seizures have been small and infrequent and Cody's been smiley, happy and very loving! His little personality is really breaking through more and more every day for which we are thrilled! And he's quite clear on his preferences these days! I left him in his high chair for a split second to grab something in the kitchen and as I returned, he had apparently grown tired of the applesauce I was feeding him and reached all the way across our table to grab a piece of pizza wrapped in tin foil - unwrapped it - and was trying to eat the whole piece in 1 bite! He's also able to turn door knobs now so child proofing will be my next endeavor. I couldn't be happier about it! In this new house, there's much more room for him to explore his world and make choices for himself - he can walk pretty much anywhere and have the freedom he needs. And the more he does this, the more I see him doing things like learning to turn door knobs, wanting to go outside, reaching for pizza - all signs that he's realizing that he has the power to make choices and the ability to make those choices happen! That is great developmentally for him. Instead of the world happening "to" him, he can create things he wants. Don is on our church's men's retreat - which I'm so happy about. Although the physical toll of having Cody by myself all weekend is great - it's worth it to let Don get out 'with the boys' to do 'boy things' (whatever those are.) I'm sure they involve sports, talking about sports, reading about sports, hearing sermons about sports....you know....that stuff. He really loves the men of our church and rarely gets to spend time with his friends because our lives are so packed - so this is really good and I hope it will bless him. Plus, my friends have pitched in and Cody's buddy Carolyn is coming over today - who Cody LOVES. No sooner do I hand him over to Carolyn then he falls asleep on her lap. I call her the "baby whisperer." She has a way with my little one that is beautiful to see! That's our Saturday - hope yours is going well too! love, Shawna April 15 Wow how things can change on a dime. Don's away for the weekend on a men's church retreat which doesn't surprise me - things always seem to fall apart when one of us is away. Last night Cody was up all night having seizures. I literally didn't get 10 minutes of sleep. Each time he almost fell asleep, a new seizure would grip him and he'd turn blue from lack of breathing. I have no idea why this sudden change, but please keep him in prayer today if possible. I am a total zombie. He finally settled around 9a for a nap but no sooner did he fall asleep than a seizure woke him up. So apparently there is no nap taking today. Sometimes I wonder how we keep going on so little sleep - even on the best of nights - he tosses and turns and wakes up at least 3 times and needs to be put back to sleep. We had to miss church which I hate doing, but I didn't want to risk him having a seizure while in child care and freaking someone out. Thanks for reading and caring - and perhaps praying. with love, Shawna April 18 Hi all. Boy Cody has had a couple of just fantastic days! He had speech therapy yesterday and occupational/physical therapy today. Both times he was smiley, interactive, huggy, and very very interested in every toy, every swing...it was so much fun. Today he went on a swing that spins and he laughed so hard and for so long I thought I was going to go into labor laughing with him. I mean, HUGE guffaws for 10 minutes straight. Oh if I'd only had a recorder. You have to realize, that Cody didn't laugh for 6 months at one point in the last year and a half. and barely smiled. I had all but given up and figured he'd be in a trance his whole life. So for this mom, huge belly laughs like I got today are priceless - and I will never ever forget his face. He also rode a trike for the first time today! He's sat on them before but when you try to put his feet on the pedals, he takes them off and just has them drag while someone pushes the trike. But today, he put both feet solidly on the pedals and let his therapist push him all over the Center! Granted, he's not pedaling himself, he's being pushed...but he'll get there. I was THRILLED he kept his feet on the pedals the whole time!!! He really liked it, so of course, I will rush to Toys R us today to find one for him. By the way, still haven't seen any of those weird head nods to the side since about a week ago, praise the Lord! I think I can safely say they must not have been seizures, but perhaps a two day weird quirk. Whew! He's back to 2-3 seizures a day, small ones. So that's been nice too. My part time nanny started this week! Hallelujah! I actually had time yesterday to take a shower. And today I just finished making a kettle of home made vegetable soup. I'm caught up on bills. And my body is thanking me for not forcing it to wrangle & lift Cody all day long. He seems to really like Elizabeth and I think she's familiar enough with him now that I can be confident in leaving them alone. She's a neat Christian girl who lives down the road. She'll be with us until May 28th when Veronica takes over for 3 months. Baby is due July 8th (WOW) so things are moving quick! I have an ultrasound tomorrow because at the last one the placenta was laying too low so they're re-checking. Can't wait to see the little guy swimming around in there! We bought a jogger stroller for Cody and Elizabeth and Don both have taken Cody jogging - he seems to love it! So I have to say things are upbeat and happy around here. I have help. Cody really seems to be thriving here and his development seems to be picking up steam. Can't think of much to complain about today. :) with love, Shawna April 20 I have to laugh - I've spent the bulk of the week gathering medical records, evaluations, getting Dr. referrals, etc. so that we can get an appt. with the neurodevelopmental Dr. at Children's hospital. After literally hours of work gathering the info they needed + faxing it, they call in a chipper voice saying, "all right - let's get your appt. scheduled! Sounds like Cody could use some support in this area!" I light up and think, "great! I hope they don't want to do it next week, though, cuz we're slammed next week." She says..."okay, my first available is July 24th - how's that?" I laughed out loud and said 'wow. ummmm...I guess that's fine." Can you imagine? To get one appt. it's a 3 month wait. Same thing with a neurologist, gastroenterologist, etc. AMAZING. Good thing Cody's not dying! I'm sure they'd still say, "that will be 3 months until we can see him." haha. He's been having a tough time the last 2 days for some reason with seizures. He had 3 before 7am today! Not a fun way to start the day. and 2 more since. I can't figure out why - so just left to pray for them to pass. These are the bad ones where he kind of stops breathing. No fun. We're up all night with him because of them so we've gotten no sleep either. Glad it's the weekend! Cody has been waking at 5-6am and at least we can take shifts being the one to get up with him instead of it always being me. Boy is it a long day when he gets up at 5am and doesn't take a nap, which has been our week. Then he doesn't go to bed till 9pm despite our best efforts. But one fun thing today - Cody got invited to his 1st birthday party! It's for Neal, a little boy in his special needs school. She is a brave woman to invite Cody given the fact that he is a wild man and will try to rip down decorations, knock over the cake, pull the other kids hair....all with a smile on his face. :) Yesterday I had an ultrasound and the baby looks perfect! Placenta has moved into the right place, right amount of amniotic fluid, etc. She said he's 75th percentile and about a week bigger than is typical for this time frame. Ugh. Please not another 11 pounder!!!! She said he's about 3.5 pounds right now. I said, "are you SURE it's a boy?" (secretly hoping there'd been a mistake.) She pointed to the screen and said, "see that? ALL BOY." I won't say what body part she was pointing to, but you get the drift. Sigh. Gone are my last visions of Barbie and hair ribbons...sparkley lip gloss and party dresses. Replaced by snakes and snails and puppy dog tails. At least I have tons of clothes - and I won't have to change the nursery colors. And Cody will have a brother to look out for him. Most of all, I'm just thrilled there haven't been any complicatoins. Just2.5 more months to go! I just put up the curtains in the nursery + put up shelves for all the stuffed animals. The rest of our house is a shambles but the nursery looks great! We are going to try to get tons done around here this weekend - course that's always our mantra. We'll see how it goes. I'd much rather take Cody to the Spring Fair in Puyallup and go on the merry go round, ferris wheel, swings, etc. But duty calls. Darn. Hope you are enjoying the beautiful sun - happy weekend to all! Shawna April 21 Happy Saturday to you! I've been pondering the idea of "pain" this week. Certainly Virgina Tech's tragedy was a catalyst. More people who (like me) are daily asking God, "WHY?" "why me?" "why us?" Parents asking (like me) "why MY child?" Cody's seizures went crazy yesterday - 6 whoppers. And at his leg brace appointment, they decided to "up" his brace from ending at his ankle, to going completely up to his knee. I just HATE those braces - and he hates these new high ones. It will make it so much harder to hold him and manage carrying him. Plus, let's face it, they just look yucky and make me sad. So yesterday was one big day of me feeling pain...feeling the "why MY child?" statement creep in more times than I could count. Pastor John Bishop of Living Hope in Vancouver (our old church) had some good insights on his blog this week. Here's what he had to say about pain: ----------------------------------------------------------------------------- There are times like these when we see suffering, we see unbearable pain and immediately we say it isn't fair. We wonder where is God. I encourage you to cry out to God, to pray and to lament (complain). Most of the Psalms are Psalms of Lament. We serve a God who is big enough to talk to. He is strong enough to cry out to. He knows how we feel, so we may as well tell Him. Having to have all the answers isn't possible, let alone reasonable. Take a few moments and pray for those who are devastated beyond belief. As I watch the news, with names of real students and teachers, who all have families I can't believe it, yet I will choose to trust in the total control of God.
He (God) understands our deepest pain. It seems that so many people try to sort of "Christianize" pain and make it all OK. We act as if we can't feel terrible or sad or confused. Frankly, we all know it isn't OK. It hurts, it sucks, we really don't like going through it. The key to all of it is will I be real with God and will I allow my brokenness to draw me into His presence? It is all about will I trust God or not? Pain is the one thing in life that will never leave you where it finds you. It will either push me into His arms or cause me to step away from Him. Do we understand it? Not most of the time. Do we like it? I think not. God wants us to be passionately honest. He wants us to be real, He wants to in these precious moments where our hearts are broken wide open, be our daddy.
Once I can be gut level honest with God, then I need to hold on to His promise. When pain happens, we always will ask "Where is God in this?" When pain happens (and it will), here is the promise that I have held onto in my life more times than I can count: "The LORD hears his people when they call out to him for help. He rescues them from all their troubles, The LORD is close to the brokenhearted; he rescues those who are crushed in spirit." (Psalm 34:17-18) Be real with God and be rescued by God. His presence is all we really need, even though it doesn't feel like it is enough. I want to escape pain, but that isn't the promise of God. Read it again. The LORD (Yahweh) is close to the brokenhearted; he rescues those who are crushed in spirit." Simply admitting I hurt, telling him, praying, yelling, crying, lamenting will trigger the promise of His presence.
I wrote something in my Bible that I often have to come back to during times like these: --------------------------------------------------- This helped me. Especially the quote, "Pain will never leave you where it finds you." It's my choice to decide where pain will take me. Into a dark hole which I may never crawl out of? Or into the light of His loving arms. Into deeper relationship with him, with Cody, with my husband, with my friends. It's MY choice. I got up at 6am after a night of no sleep with a seizing child. I am tempted to let it ruin yet another day. To chalk one more day up to "this stinks. What a raw deal. I'm just going to be in a bad mood all day and let everyone know it." But what's the point? As John admonishes, I will choose to cry out to God that this stinks, this is a raw deal....and I will trust His promise that "He rescues those who are crushed in spirit." I will try to complain a lot less to those around me, and complain a lot more to God...knowing He can take it...and knowing it will trigger the promise of His presence. love, Shawna April 24 got to work in our church office today! That may sound like a small thing to some, but to me, it's HUGE. I worked there as the secretary for 2 years before I met Don. It was glorious. The most fun I've ever had. The most rewarding job I've ever had. Serving our church body - seeing them every day - working shoulder to shoulder with our Pastors - what a privelige it was. I can only volunteer 2 hours a week but it's my small attempt to get outside my own crazy world and try to serve...and focus on others instead of our family. It was so nice. Now that I have a part time nanny, my dream of serving again has been realized. Cody did great with her without me so it was a win/win. It was also great to take a shower, put some make up on, fix my hair, and wear something that wasn't drooled upon or barfed on! haha. I love love love my little Cody, but sometimes I forget there's life outside these four walls. So today was a huge blessing to me. He's still having more seizures than normal and I'm not sure why. We go into his gastro dr. tomorrow for a follow up to his surgery and I have lots of questions. Cody tosses and turns ALL night every night...and the more he tosses and turns, the more his seizures are exacerbated. I have a gut feeling it's stomach upset, gas, etc. I've taken him off all dairy and that seems to help. But every time he eats a darn vegetable he's up all night tossing. I don't want to eliminate veggies from his diet, so I have to ask the gastro dr. what to do with a child with such a sensitive tummy. I give him mylicon every night before bed but it doesn't seem to help. We had a great weekend -- we hired a sitter for 4 hours so Don and I could getaway for a date. We went down to the waterfront and got the perfect corner outdoor table at a bistro and just sat and talked, ate, talked, ate....it was so nice. And Saturday we drove down to the Spring Fair in Puyallup. I thought Cody might like the kiddie rides but -- couldn't really tell. Don had to go on them all with him since I'm pregnant and it was quite a site. They got on the kiddie swings and Don's legs practically dragged on the ground as they swung the toddlers around. Don's such a good sport - most of the other "riders" were kids only so he looked a little out of place but he never showed it. He was solely focused on Cody and trying to make it fun for him. I took pictures and videos...but never got so much as a smile from Cody. It was kind of sad, but that's okay. We decided to make the best of it. He went on a few more rides with dad...we ate burgers, elephant ears, and then called it a day. It was a nice outing and a nice time for the family to be together. So that's our current news - thanks for checking in! Shawna April 27 We just adore Cody's gastroenterologist! Saw him this week. Course I never thought I'd have need for someone called a "gastroenterologist" - nor did I know they existed! Dr. Wahbeh is a really cool dude - and gave us the great news that Cody's surgery biopsies all came out perfect! He has no structural flaws internally in any area. Whew. I was waiting for news of a tumor, or hernia, or who knows what! His gastro problems have plagued him so much I was fearful something was amiss. So we're left with the gross, disgusting "rumination syndrome" to contend with....and this crazy tossing and turning and writhing all night. Dr. Wahbeh said he's sure it's gas pain given my description and given Cody's gastro issues. Poor Cody. His little mixed up brain just can't regulate his body very well - so his digestive system doesn't function up to par. Plus his seizure meds create constipation (which we're always battling) and that causes more gas. He also doesn't chew his food as much as he should (another problem related to his brain) - so that creates additional gas. We have an appt. with a feeding therapist (again...who knew this expertise existed?) to try to sort out the chewing problems. And in the meantime Dr. Wahbeh put him on an all natural laxative to try to get his system running more normally to eliminate the gas. He was already on Miralax but he added "Senna" which somehow helps with gas as well. We'll see how it goes. We just want SLEEP! Don didn't sleep one wink - literally - last night from Cody's constant waking, pain, tossing & turning. Luckily it was my night to sleep on my own (we take shifts every other night) so I got some sleep. But when you're pregnant and making 3-5 bathroom runs in the middle of the night, sleep is hard to come by anyway! I'm just at that point where I have to sleep on my side and stuff pillows between my legs - never do get comfortable. So sleep here is definitely lacking for all of us! Cody's issues just seem to come in waves. Once we have one problem solved, another rears it's ugly head. So I guess our new prayer request is sleep - no tossing & turning for Cody - and for his tummy problems (including throwing up 50 times a day) to subside. I cleaned up barf-ola on the carpet (and on me!) all day long. I have to change his clothes too many times a day to count, as well as mine. It's really disgusting and difficult. The GOOD news, however, is that despite all his tummy upset, for some crazy reason we didn't see ONE seizure today! THAT is unheard of in our house. Usually when his tummy flares up, his seizures do. God must have known I couldn't handle the barf-fest plus seizures all in one day! So we're grateful for that. Tomorrow we install his beloved indoor swing from our ceiling thanks to our dear friends Kathleen & Larry. Larry's hauling over his 20 foot ladder to reach our cathedral ceilings - and Cody will be THRILLED! That will be fun. He misses swinging - today at his special needs pre pre-school class, he climbed right on the swing and wouldn't get off! He just loves that class - there's about 8 other s.n. kids with varying disabilities. Some have Downs, some autism, some have unknown developmental issues, one is a little person, and then there's Cody - seizure boy. Cody's favorite buddy is Parker, the little person. Parker is about as CUTE as a boy can get! And he seems equally fascinated by Cody. Parker sat by Cody during snack time and Cody kept stealing Parker's snacks. Luckily Parker has a great mom who kept saying "don't worry about it!" I was in a panic trying to control my octopus son who has no idea what "no" means. Cody rode a trike for about 20 minutes which was a fun sight - he doesn't get "pedaling" but sits there with his feet on the pedals while being pushed. He also got invited to his very first birthday party! Neal (another buddy from the s.n. school) is turning 2 and we are invited! Parker will be there too - no doubt clutching his favorite object - his little red fire truck. This class really warms my heart every Friday. These kids, each with their own quirks, are such a blessing to us. Cody's never really had any "friends" - we've never had normal play dates cuz he doesn't really play - nor does he much notice other kids. So this birthday invitation was a very sweet thing to receive. I told the mom, "do you know what your'e getting yourself into with this group of kids at your home?" We laughed. She's a brave soul! It may take both Don and I to make sure Cody doesn't rip her house into shreds! Luckily Parker is really smart cognitively so he'll get along great. These moms and I have become friends - and each child has become special to us. They have such tolerance for Cody who is like a bull in a china shop in this class - he towers above the other kids and has no regard for walking right over them. He just doesn't "get" that you walk "around" a person instead of right thru them. He doesn't get that you don't grab toys and food from others. He has no concept of 'no' or danger. He doesn't respond to his name. So as I chase him for the whole class and try to make sure he doesn't kill himself or anyone else, the moms pitch in and smile...patient and kind with my little guy. It's a nice cocoon for now. The real world isn't so tolerant of Cody's idiosyncracies....but this class is a haven. My new goal is to give praise for 5 things every night, no matter how bad the day was - and tonight they are: 1) for Cody's class, friends, and his birthday invitation 2) for all of you who take the time to read this site and keep up to speed on our crazy world. 3) for no seizures today! 4) for a fun swing going up tomorrow! 5) for a husband who is at Home Depot as I write this (at 10pm on a friday night when he could be in bed!) But he's getting the hardware for the swing. He is so committed to his son. That's our life at the moment - thanks for checking in! With love, Shawna April 30 Oh my word - what a weekend! Saturday we went to an epilepsy conference led by Cody's new neurologist, Dr. Senato. Very good - like him a lot. There was a Q&A time (and of course I asked 5 questions!) I had one more so I made Don ask it for me...and it turned out to get an insightful answer from him. Don asked, "isn't it depressing to see these children whose seizures just keep getting worse all the time?" His answer was, "yes. Terribly depressing. Sometimes I just go home and go into my child's bedroom and watch him sleep...remembering how lucky I am." I asked what kept him going in such a grueling profession full of loss. He said that he puts himself in our shoes and knows how much we parents endure. So he wants to help. I liked that. We see him for the first time this Thurs. And Sunday...Cody was in our living room and lost his balance...fell and hit about an inch below his eye on the wooden stair of our hardwood floor. There's no worse sound than to hear your child's head crack on something. He went ballistic and instantly, a huge black line appeared right along his cheekbone...kind of like a big varicose vein that kept getting bigger and bigger. The skin wasn't broken, but this black line was weird and spooky! I called the E.R. and they said to bring him in cuz that's indicative of a hairline fracture of either the cheekbone or orbital bone. YIKES! So we took him in and 2 hours later, they said it didn't feel like there was any bone chips but to keep watch on him for various symptoms. So Cody's got a shiner the size of a silver dollar! Consequently, his seizures, which had been zero for 2 days, skyrocketed to him turning blue 3 times yesterday and twice today...convulsing...passing out. Horrific. Any stress and his seizures just go nuts. So it was a tough two days. He just fell asleep on daddy's lap and I pray tonight give him relief from these seizures. He's such a trooper. He's been falling a lot more lately - legs covered in bruises and now a shiner. Course I told everyone today, when they commented on his black eye, "YOU SHOULDA SEEN THE OTHER GUY!" haha. gotta laugh or you'll cry, right?!? I think a helmet may be in his future altho it pains me to even write it. The more we crank up the dosage of Trileptol, the wobblier he gets. Such a tightrope - raising the meds to relieve seizures but not so much that they make him incapable of walking properly. So hard. So hard. The one silver lining was that Don's 2nd cousin Kerry (who is reading this today because she reads this site every day, bless her heart!) was working at the front desk when we walked into the E.R.! We hadn't seen her since our wedding 4 years ago, and lo and behold, she's checking Cody in. Kerry - you were a welcome sight in our panic! She told me she reads about Cody every day...what a devoted relative. And kudos to her for wading thru all my blathering! :) It's so much easier to trust the Lord on seizure free days! When these "blue" seizures happen - I just go straight to "what are You doing? Do you not SEE this? Why aren't You stopping this??" My relationship with God is sometimes so fickle. When things go well, I press in and feel all warm and fuzzy. When things take a turn for the worse, I shake my fist. I long for a deeper relationship - or perhaps a more mature one - where I accept whatever comes my way with equal trust. "He gives and takes away...blessed be His name." These hard core seizures cause such a visceral reaction in me that my "spirituality" goes out the window and is replaced by raw fear and anger. I suppose if only good things happened, my faith would never be forced to grow. I'd never be forced to wrestle with God over the "whys" of life. But our relationship would remain shallow. Kind of like a husband and wife who never argue. It may 'feel' easy - but there's no depth. Working and struggling through conflicted emotions - through moments of love/hate - deepens all relationships...and even more so my walk with the Lord. I take comfort in that. He can take my anger and my shaking fist. What He can't take is silence and withdrawl. I think God doesn't mind so much that we wrestle with Him...seem like His goal is to be included in our life moments - the good and the bad - rather than be shut out. I guess that's called intimacy. Pretty cool. love, Shawna
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