changes

A new year often represents changes for all of us. Some make resolutions to lose weight, pay off debt, spend more quality time with loved ones, or quit addictions. I've never been one for resolutions, because when I "fall off the wagon", which I ALWAYS do, it would be too tempting to say "Well, maybe next year." Instead, I am constantly trying to improve on myself (and believe me, I have PLENTY to improve on!) and I don't put time restrictions on it. That way, when I mess up, I know that tomorrow is a new day. I always have a list of things I want to change, which gets to be overwhelming sometimes. I'm always trying to be more financially responsible, lose weight, and spend my time more wisely all at once. (Nope, that's not the whole list, just the ones I'm willing to admit to at the moment.) I keep saying that I'll just try working on one thing at a time until I've made it routine, then work on the next, etc. Am I the only one who is impatient? I want everything perfect NOW. If I just do one thing at a time, I might be ringing in 2012 before I even make a dent in my list! I wish you all the best of luck in attaining your goals, whether they're New Year's Resolutions, or just something you'd like to improve on one day at a time. 


Tate will have some big changes very soon. His surgery is in just 12 days, and I'm sure there will be some adjustment period for us. I am looking forward to seeing how God uses this in Tate's life. I don't know if that will be anytime soon, but I know He has a plan. Thank you for loving him, supporting him, and praying for him. And thank you for carrying on with us into 2011. 


If you missed Tate's front page news article today in our local newspaper, the Winston-Salem Journal, you can view the article here.

letting my secret out

Tate's surgery was originally scheduled for January 21st. We booked that date back on November 17th. It was so far away... it was like a light at the end of the tunnel, but it was far enough away to seem like maybe it would never really happen. I guess that's my secret... hoping that it would never really have to happen. This has been such an emotional rollercoaster for the last few months. After 3 years of everything going smoothly, we figured that the possibility of eventual eye removal was just something they have to tell you so they don't get sued. 


I know God will take care of us. I know people are praying for us... for peace, for comfort, for God to carry us through this. We had the absolute pleasure yesterday of meeting David and his family. They showed us that it will all be ok. Things will be normal again. A different kind of normal, but our new normal. I KNOW that with my brain. But my heart... it feels like it's breaking into a thousand pieces. I just want to make it all better. Not by having my son's eye surgically removed... I want him to keep it and still be pain-free. When I first told him a few months ago that we were going to have to have his eye taken out so it won't hurt him anymore, he said "Please, Mommy, don't let them take it out. I want to keep my eye, but I want to be able to see out of it!" That's what I want for my son. I haven't lost my mind, I know that isn't going to happen. I know that we will go through with the surgery, his pain will finally be relieved, and we'll get used to caring for him a little differently. It just SUCKS. Can I say that without worrying that people might think I'm not strong enough? I know that in the grand scheme of things, losing an eye isn't a huge deal. It's just an eye, it's only one of his eyes, his condition won't spread to other parts of his body, and it's not life-threatening. But he's my kid. And it sucks. When you're a mother, your whole world is turned upside down. As a mother, you love your children so much that sometimes it physically hurts. You are responsible for this beautiful work of art that God has given you to care for. He does not belong to you, he belongs to God. But God has entrusted you with this precious child, and you are there to love him, protect him, and raise him in a Christian home. And no matter what, you NEVER want to see him hurting. I wish this hadn't happened. But I think I know one reason why it has. It has forced me to lean on God more than I ever have in my life. I have needed God, been on my knees in His presence, talked to God, leaned on Him, collapsed into His loving arms more than ever before. I know God has more purpose in this than bringing me closer to Him, but God amazes me with the way He always gives us that bright side. When things seem like they can't get any worse, He shows us that His hand is always in it. And for that, I'll always be thankful. 


In other news, it looks as if Tate's surgery is being moved up. For those of you praying for a cancellation, THANK YOU! I got a call from the hospital this afternoon telling us to prepare for January 12th. I was crying on the phone with the receptionist who called me (they're probably getting used to that by now) but I was relieved to know that my son's pain would be eased a little sooner than we originally thought. I called Todd at work to tell him... he seemed glad to hear the news. I remember saying, "This is good, right?" He said "Yeah, of course." I asked him, "Then why am I crying?" That's when I realized what my secret was. This rollercoaster journey went from surreal to very real in a flash. Hold on tight, it's about to get crazy. 

a glimpse of our new normal

When I heard about a local family who had gone through an enucleation (eye removal) with their young son, I passed my number along so that I could ask them some questions. There is something about being able to sit down and chat with someone who has been through what you're facing that is SO much better than just reading about it on the internet. Kim called me the weekend before Christmas and we talked for over an hour. We decided to get our families together so we could meet her adorable little guy, David. We thought it would be best for Tate to keep it casual by just getting a couple of pizzas and letting the kids play. We were so excited to finally get to meet them tonight! 


We showed up with dinner a little after 7 (a little late, since Todd's piece of junk car decided to break down on his way home from work!), and we sat down to eat. The kids were kind of quiet during dinner, but by the time they were finished eating, it was like they were all old friends. They ran off to play while Todd and I chatted with Kim and Rob. David lost his eye from retinoblastoma (cancer) when he was 2. He didn't get his prosthetic eye for several months afterwards because of the chemo and radiation he was undergoing. He is such a sweet boy, and so smart. He told us all about his prosthetic eye. It happened to be cleaning time while we were there, so we got to see how that works. Here are a few of the photos I took tonight:


David takes his eye out by himself.

It was quick!

The prosthetic eye isn't a ball-shape like you see in the cartoons. The underside is concave, so it's more like a really thick contact lens. They're made of acrylic. They're also hand-painted. It's amazing.

Still smiling!

And it's back in! David takes his eye out, but his mom puts it back in for him, with the assistance of some eye ointment and mineral oil to help it go smoothly. What a cutie!

They only take his eye out when it's irritating him, like when he gets an eyelash or something in it. There are telltale signs like redness around his eyelids or David rubbing his eye. (Kim warned us that when David rubs his eye, it will often get turned upside down!) A wash with warm water and Ivory bar soap, and a squirt of eye ointment and a little mineral oil on the back, and it's ready to slide back in. It had been a couple of weeks since they had to take it out last. The general rule is "Don't bother it unless it's bothering you." We looked through some photos of David before and after his surgery. His "before" photos were just pitiful. He had so much pain before his surgery, that he didn't even need pain medications post-op. I wonder how Tate will do. 


I felt better than I expected about the whole thing. Everyone was waiting to see how Tate would do, and I was worried about how I would do! We talked a lot about God bringing us through trials, and always giving us enough strength to handle whatever it is that we're dealing with. There have been times that I have just wanted to throw a good old-fashioned temper tantrum and say "This is it, God! This is my limit!", but I know that He will carry me through these times. It's okay to grieve and cry and struggle, but in the end, we will lay it as His feet, and He will pull us through. Only God knows the plans that He has for us, and I know He has big plans for Tate! He has a reason.  Jeremiah 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."

All of the boys enjoyed meeting David and his family. Jake and Noah weren't afraid to get a super close look at David without his eye in. They both said later that they were surprised that the eye wasn't a ball shape, and that it didn't bother them at all to see David without his eye. I think Jake was more surprised than anyone that it didn't bother him. He was pretty nervous about it beforehand. Tate was really clingy to Todd while David took his eye out. He was facing away, but Kim said she saw him peeking some. I thought it would be best to tell Tate about David ahead of time, and that we'd get to see his super-cool eye, but I think he needs to get more comfortable before he's ready to really watch. We plan to get the kids together again soon to play, and they assured us that they're there anytime Tate decides he's ready to see what it's like to have a prosthetic eye. Tate might have his own before he decides he's ready to see it! :) 


I talked to Jake and Noah when we got home, so I could answer any questions they might have. We talked about why David had to have his eye removed, and we talked about the bone growing in the back of Tate's eye. Jake and Noah both have a newfound sympathy for Tate. It might keep them from wrestling around with him so much. For a day or two, anyway. The boys decided that they didn't want to bring Tate's sick eye home from the hospital, that they'd rather donate it to science (um, yeah... good plan!). We prayed for David and Tate, and the boys went to sleep. 


As far as Todd's car goes, we'll worry about that tomorrow. We're praying that it's something that isn't too expensive to fix since our funds are pretty much tapped out between having to use our emergency fund to replace our washer and dryer and the medical bills rolling in. When it rains, it pours, but God always provides. Philippians 4:19 And my God will supply all your needs according to His riches in glory in Christ Jesus.

puppy dog patches

I think I mentioned a while back that I ordered a cute little puppy dog paw print eye patch for Tate, per his request. Have I mentioned that he's refused to wear it? Yes, in perfect stubborn-4-year-old style, he has refused to put on his hand-picked eye patch. I'm not delusional, I know it's a big change. I have only encouraged him to wear it so far for a few minutes each day so he can get used to it... after all, he'll be wearing it quite a bit here in just a few weeks. We got cloth patches to avoid irritating his skin with the Orthopads or other similar sticky patches. You can tell him all day that he'll be cool like a pirate, but still no dice. 


I blogged yesterday about being concerned about his sensitivity to light. We did start him back on the drops, and put a call in to the doctor's office to see if they have any advice on the issue, or if we can even move Tate's surgery up under "emergency" circumstances. I have a hard time feeling like it's an emergency, because it seems like more than half of his day, he is playing and having fun with his brothers. I do know he's in pain, even through those times, because of the way he's constantly messing with his eye, pushing his fingers into it, and leaning on his palm with it. But until it's affecting daily life, I don't know that it really constitutes an emergency. Not that it matters today... the surgeon is on vacation until next week. Maybe we'll get a call then that they can work him in... I definitely worry about it some days more than others. 


ANYWAY... back to my point. Yeah, I tend to get off track sometimes. Since no one seems to have any good advice on dealing with light sensitivity, I thought this might be a good time to enforce patch-wearing... figuring that if anything helps, that will. So I explained to Tate last night that I expected him to wear his patch for at least 15 minutes today. I told him that I want to help his eye not hurt from the light. He complained complied, of course. I put his patch on him at 11:30 this morning. We watched Jake play Epic Mickey on the Wii. I had to hold Tate's hands for a while, because his instinct is to pull it right off. After a few minutes, he wanted me to let go of his hands, which I did. And he was fine. He didn't mess with it, except to adjust it a little. I bribed rewarded him with brownies, and he got to help me make them. He kept his patch on during this adventure, so in typical photographer-mom fashion, I snapped a couple of quick photos for your enjoyment. 

He really had to summon his Spidey strength to stir that brownie mix!

Please ignore the bed-head. It is still Christmas break, you know. So you want to know how long Tate wore his patch? TWO HOURS! Then he came to me right after he pulled it off and said "Mommy, is my 10 minutes up yet?" I really need to teach that kid how to tell time. Maybe later. :) 

it's worth a shot...

Ok, so a while back, we made a conscious decision to stop giving Tate his eye drops that were prescribed to treat his glaucoma. They seemed to have become ineffective, as we were told they probably would, because he was still having pain despite the drops. The drops seemed to be doing more harm than good... he hated getting drops because they would sting his eye so bad. His eye got SO red afterwards... it was awful. So we stopped giving them to him. We didn't consult the doctor first, but at this point, we knew the eye was being removed soon, so we didn't sweat it. 


Fast forward to today... he has been having a lot of trouble with light sensitivity, which can be caused by a few things, from what I've been reading, one of which is glaucoma. He also has been having pain much more regularly. As I've mentioned before, the pain can be caused from a few things that all have to do with the degeneration of his eye... his glaucoma, the band keratopathy (calcium deposits on cornea), or the calcium formation in the back of his eye, which has formed a bone. We assumed the bone in the back of the eye was the cause of most of the pain (sounds like it would be, right?), especially since the glaucoma drops didn't seem to be helping. But Tate actually asked for his drops today... he informed me that he should be getting those drops every day (if only he felt that way about his pain medicine!). Well, it wouldn't be the first time we let the 4-year-old call the shots. As soon as he said it, I got the drops out...  I don't know how much it will help, but it's worth a shot. And I'm proud to say that he took them like a champ.

finally!

So Tate was having some swelling and some pain this morning... enough to actually voice it. Although this is always a dead giveaway that he's hurting... 

He presses the palm of his hand into his eye and leans on it that way. That's what helps to relieve the pain for him. This is what I noticed first this morning. So I asked him if he was ok... he said his eye was hurting. Not a good sign. His baseline of pain is quite a bit higher than you or me, so if it hurts enough for him to complain about it, it REALLY hurts. I offered him the bubble-gum flavored chewable Tylenol that he picked out at the store last week. Of course, he refused it. I finally got him to try one (his dosage is 3). He chewed for a few seconds, then made the face of disgust (completely intentional on his part. I really don't think he minds the meds, it's just one of his control issues). It was actually kinda cute. :) It took quite a bit of deal-making to get him to take the other two, but finally, he chewed them up (after I served them to him on a spoon out of his oatmeal bowl, per his request.) I asked him a little while ago if his eye was still hurting or feeling better... he said it was feeling better. I asked him if that meant that the medicine helped, and he said that it did. Yay! Hopefully this is a breakthrough that he will remember. 


Here are a couple more photos from this morning... 




Not feeling too good... :( 

He still managed a smile for me though! I just love his sweet face... 

Thank you for praying for my boy! I hope you all have an amazing Christmas! We'll be spending time with family, enjoying His blessings, and celebrating Jesus! Merry Christmas!

less than a month...

The big day is less than a month away now. I called to see if we could move up the surgery because Tate has had so much more pain lately. Of course, they are booked up through February, so we're keeping our date of January 21st. We have been added to the call list though in case of cancellations. I know there are several of you praying for a cancellation - thanks for that! Seems likely this time of year, right? If we do get to move it up, it would be a scramble... that scramble that we were trying to avoid by planning it out... of getting Todd's mom down here to help with the other boys, working out our work schedules, etc to accommodate a different surgery date, but if it relieves Tate's pain sooner, it would SO be worth it. 


Tate is a tough little guy, and he is back to rarely admitting to pain. Some days are better than others, but overall, Tate's pain is showing through in his moods. He's really irritable these days, and who can blame the kid? I can be pretty irritable when I'm sick or in pain - just ask Todd. :) So I'm picking my battles. It ought to be interesting to see how my inconsistency in parenting adversely affects us down the road. Many of you know that Tate has always been stubborn... he only has a couple of things in his control, and he likes to KEEP control of those things... what he wears  (or won't is more accurate - things with collars, buttons, and sometimes, bears!), and what he eats (again, won't eat is more appropriate here too - but this list changes daily). We have gotten past some of the issues with clothing, but on the days he doesn't feel well, it comes back with a vengeance. He's the first 4 year old boy I've ever known to care about what he wears! I discovered yesterday that the reason he won't eat green beans anymore (one of his previously favorite foods) is because of a certain song about beans that my older boys taught him. I had to explain that the song isn't talking about green beans. Oh boy. Haha. And on one recent particularly pitiful day, yep, he in fact DID have pudding for breakfast. He turned down his regular favorite (Gogurt) and when I saw that sad look on his face, I blurted out "How 'bout chocolate pudding, kiddo? Would that make you feel better?" It was SO worth the little smile on his face. I may not be Mom of the Year, but if pudding for breakfast helps my little man feel better for now, then I'm ok with it.


Some days are better than others for me, too. It's been an emotional rollercoaster. I've forgotten everything from the kids' dentist appointments to birthday parties, and most days, I'm surprised that I can form a coherent sentence. I know that part of this is the chaos of the holidays mixed with stress from what is coming up next month, but I had a huge To Do list for Christmas break, and with my increasing inability to stay on-task, not much is getting done. There are several things I want to have done before Tate's surgery, because I plan nothing but lots of cuddle time with my boys for at least a week or two afterwards!


Thank you all for the prayers. I know God is hearing them all, and we can certainly feel the love. Thank you for caring about us!

mixed emotions

I feel SO scattered these days. Within a day or two of my last post, our washing machine quit completely. We had to replace it, and went ahead and replaced the dryer, too. Not that we didn't enjoy running our jeans through 3 70-minute cycles to get them dry... we'll miss those days. So yeah, spending several hundred dollars just a couple of weeks before Christmas kinda stunk. But man... I LOVE doing laundry now. You know... when I have time and all.


Tate hasn't been feeling too hot lately. If you spend 5 minutes with him, you can tell he's feeling pretty puny. I have had lots of people asking about him lately, and we certainly appreciate all the prayers. Keep them coming. We have a month until his surgery, and his eye seems to be going downhill fast. I thought I'd add a couple of photos to show you what I'm seeing... keep in mind, although I'm a photographer, it's NOT easy to take a photo of a 4 year old's eye... especially when he pretty much never opens it anymore.


This first one was taken on November 15th...

The next 2 were taken on December 17th... shows the degeneration occurring over the last month...

I can't tell you how much this breaks my heart for my sweet boy. I know he's in pain. He squints all the time, and the light really hurts his eyes, too. He's had several moments in the last week that he's been in tears from the pain, but most of the time, he tells me that he's fine. I can tell that he's not, but I just keep remembering that we don't have much longer, and this trial will be behind us. The doctor has told us that we can give him ibuprofen to take the edge off the pain, but Tate refuses to take any meds. And when a stubborn 4 year old doesn't want to take meds, it's pretty much impossible to make him. We've tried every trick in the book. So please keep praying for him. Please pray that his pain is lessened, so that he is comfortable while we wait for the surgery date to approach. I never thought I'd say this, but I'm READY for this surgery. It has to be better than this.


There is something I've dreaded to add to my To Do list, but it's gotta go on there. I need to call the insurance company to see what we need to expect as far as bills go from his surgery and prosthesis. I like surprises, but not this kind. We have to budget for this, and I have to get an idea of where to start. We took Tate to a world-renowned specialist in Michigan in August, and we're STILL getting bills from that. I think we've hit somewhere just under $2k now (out of pocket), and he was only there a few hours, didn't have surgery, and didn't stay in the hospital. We thought we had seen the last of the bills from that visit a couple of months ago, but had a surprise in the mail today to the tune of $805. Yep, 5 days before Christmas. Awesome. So this time, I'm going to ask them to spell it out for me beforehand. One thing I want to be very clear about.... every penny is more than worth it to make my little guy feel better. I'm not upset about having to pay it. I just want to be prepared. Some of you know that we've been on the Dave Ramsey Total Money Makeover Plan since February. We've made a TON of progress in the last 10 months... but we're hitting about a $5000 setback from what we expect between these 2 medical bills. Having to replace our washer and dryer just before Christmas didn't help either. It's SO frustrating to bust your butt to get ahead, then hit brick walls. But I know we'll get through it. God will provide, He always does.


It's almost Christmas, when we celebrate the birth of our Savior. We celebrated my oldest son's 10th birthday today. We have so many blessings, so many wonderful friends, so much to be thankful for. I have been really distracted lately, and I have some days that I just want to crawl back into bed and sulk all day. I'm grateful to have friends who pull me out and keep me going. I have SO many emotions, I feel like I'm all over the place. I'm happy, sad, anxious, nervous, worried, excited, overwhelmed... so I apologize if you call/email/facebook and don't hear back from me right away. But don't give up. I still need you. Thank you for being a friend. (insert Golden Girls theme song here).

complete chaos

Did you know that Christmas is here in just 24 days?!? I haven't finished my Christmas shopping, I'm working at the airlines all this week and next week (a rarity, I know), and I have like 6 photo sessions to edit and 3 more to shoot this week. I'm sleep-deprived (I work til 2am, in bed by 3am, up again at 645am), I'm worried about my little guy, my house looks like someone broke into it, and I haven't had time to unpack from our Disney trip OR Thanksgiving trip to Ohio. Even if I did bother to unpack, the spin cycle on our washing machine has to be started by hand because the motor has all but completely gone out in it, so laundry takes ALL. DAY. LONG. And with 5 of us, it piles up quickly. Alas, we are running out of clean clothes, so I'll have to choose soon... sleep, but smell like dirty socks, or wear clean clothes but have bags luggage under my eyes. Looks like more sleep-depravity coming right up!