SSssssttttrrrrrrrrrrrreeeeeeeeeetttttttttccccccccccchhhhhhhhh

So, in my small group at church we have a saying for when times get tough and that is that God is stretching us. Well, if you have read any of my other posts, you would see that God has been stretching me like crazy! And now is no exception.

As most of you know, Isaiah got a sugar compound placed in his mitrofinoff to tighten it and hopefully rectify the leaking problem three weeks ago. It worked AWESOMELY! I was so excited and the doctor was hopeful that it may be a permanent fix. Then, yesterday it was almost like a flashback; Isaiah's mitrofinoff started leaking like we had never done anything to it! I mean, he was soaking clothes left and right. His teacher called asking us to send multiple sets of clothes when he comes back, b/c not only did they use all he had, but they also had to use a couple of things from other students as well. He just wouldn't stop leaking!

So, I called the doctor yesterday and last night he decided that he needed to see Isaiah today in the office. I took Isaiah up there and all I could think was that I really hoped that it would leak when the doctor came in, so he would see what I was talking about. Well, sure enough, as the doctor walked in, it was almost as though a geyser had blown it's top! In a way I was happy, but in a way I knew what consequences this could bring. Fortunately, though, the doc came up with an idea: he wanted to make sure Isaiah's bladder was completely empty and then see if it still leaked, hoping that maybe we just weren't emptying his bladder all the way. Well, he emptied it and after a little while it started to leak just a little bit when he got excited and when his belly was pressed, so we were sent home with instructions to keep an eye on it over the weekend and call the doc on Monday.

Well, today is my birthday, so my husband took me and the kids to a Japanese steakhouse that made Isaiah EXTREMELY happy! It was fun to watch his reactions to what the chef did! Then, when we left, it was like all of that excitement and fun disappeared when I found that his shirt was soaked as well as his pants under the mitrofinoff site. I wanted to cry. I text the doctor who responded with clear frustration with the situation, b/c he knows what risks a bladder augmentation on a child carries with it and has been trying everything he can to avoid it and every attempt he has made has failed.

So, long story short, he is going to get the surgery set up that we have been trying to avoid like the plague. I felt like I had been sucker punched and could do nothing about it. That's one of the most frustrating parts of this whole thing: the fact that you can't do anything to help your child, you know? I mean, I have a girlfriend who's son seems to be allergic to EVERYTHING and I wonder how in the world she deals with it. But, she can help him, by avoiding those things. Although, it's extremely difficult at times, it's doable. Here, I can't do anything, but watch and pray. I feel helpless and horrible. You've seen and heard how mothers are the ones that make everything better. Yet, here I am, watching my son get scheduled for yet another surgery (and not just any surgery, one that carries with it HUGE risks) and I can't take any of the pain from him, I can't take his place, I can't make any of it stop.

So, if you don't know Christ as your personal Lord and Savior, you may ask yourself: why would anyone want to serve a God that would do this to their child? I'll tell you, it's not easy. To be completely honest, I have been balling my eyes out the entire time I have been typing this. But, I'll try to explain it the best way I can. I have been through hell. I'm not talking about with Isaiah, I mean hell I brought upon myself through stupid decisions. And, although I wouldn't outright deny God, everything in my life and every one of my actions did. Even after I spat in His face, and kicked Him, and turned my back on Him and shoved that crown of thorns a little harder on His head, He NEVER turned His back on me. EVER. I look back and see so many places and times that His hand was covering me in MY stupidness. HE was covering ME when I was turning my back on HIM. I shouldn't even be here right now! I should be dead or at the very least HIV positive or severely handicapped by my stupidity, but He saved me. He thought I was worth it! Worth getting a nail hammered in both of his hands and feet. Worth having a crown of thorns pounded onto his head until the thorns had actually met bone. Worth getting beaten to within inches of His life. ME! I was worth ALL of that!

Now, I may not understand why Isaiah has to go through what he's going through. I'm no expert on God and His ways or thought processes. There is one thing I do know, though: everything I have ever been through, whether self inflicted or not, has brought me closer to Him and has made me strong enough to deal with and go through this with Isaiah. Yeah, I'm gonna cry along the way, there even times that I am going to wail, but I will tell you God loves Isaiah more than I could ever love him and I will NEVER give up on the ONLY ONE that has NEVER turned His back on me. I will NEVER give the devil another opportunity to have ANY hold in my life, no matter what I have to go through. It may seem tough, but the hope He gives me to know that I am not alone in any of this and that He is crying right along with me and hurting, b/c I am hurting is worth going through this and more.

Good times!

So, we went to the beach last weekend! I was so excited! It was totally free other than gas to get there and back, and food! Isaiah went with us, b/c we didn't feel comfortable leaving him with anyone with everything going on. Plus, we figured that he needed a break as much as we did!

We drove down after Richard got off work on Friday and as expected Isaiah was quiet the whole way. He loves watching everything passing in the window and at night he loves the lights. I was surprised, though that he fell asleep on the way! He normally is too nosy to fall asleep!

Saturday morning we went to the beach, it was the first time this year that Isaiah was allowed to get into the water and the first time he had ever been to the beach, let alone the ocean! So, I took him in with me and he LOVED it!!!! He was crackin up over the waves and birds! It was so nice to watch him enjoying himself. Then, when we went to take him out, I found that the chait tube that was JUST replaced was GONE!!!! When I told Richard what happened, him, his brother and sister-in-law realized that they just saw it in the water and thought it was a small squid and were afraid to touch it! After we finally stopped laughing over that, we looked for and found it again! Can you believe that?! As many pairs of my sunglasses are sitting at the bottom of the ocean and we were able to find (not once, but TWICE) a white chait tube in the ocean with white beaches!!!! When I saw it, I finally realized how pointless that thing is for Isaiah!

See, the chait tube is like a little rubber tube that goes into the MACE and coils up inside the bowels. Well, the part that coils up is rubber also and it's supposed to anchor the chait tube in the bowels. For Isaiah, that is a MASSIVE waste, seeing that he crawls on his belly all of the time and spends his nights sleeping on his belly! Meaning, that thing was bound to get yanked out at some point! So, our first day at the beach cost us another hospital visit, although we haven't gone yet, but it's coming as soon as his urologist comes back from vacation and finds out what happened! It's sad that we have seen that man so much that my daughter now has a song for him!

Well, the rest of the weekend rocked and Isaiah had a ton of fun! He was exhausted when he went back to school at the beginning of the week, but has been cracking up the whole time from what I hear! Good times!

It's been a minute...

So, I haven't written in a while. It's been crazy around here. Things have not slowed down with Isaiah at all and life doesn't seem to slow down either!

OK, so two Wednesdays ago I received a call at 9:30 in the morning to be at the hospital at 1pm that afternoon to get Isaiah's chait tube put in. The thing was that I also had an appointment set up to find out the damage I had done to my ankle just before leaving the hospital earlier this month. So, I was able to rush over there and find out that I had bruised my bones and that was why it's been hurting so badly. Fortunately, I didn't fracture anything, though!!! Then, from there I had to rush to the hospital for Isaiah and since I had the other appointment, I didn't have time to drop Isabella and Jeremiah off with anyone and Isaiah wasn't allowed to eat, so I had to sneak a couple of little snacks to Isabella and Jeremiah, so they didn't start screaming. Those of you who have children know that those little snacks didn't save me from anything!!!! Isabella and Jeremiah argued over everything! They were so crabby and what's funny is the fact that the one person that hadn't eaten anything was the only one that was quiet!!!! Isaiah didn't complain about anything! Well, with the other two complaining, every minute that passed felt like a hour! Finally, Isaiah was taken and I was able to take the other two to the cafeteria for some horrible pizza and cookies. I will tell you, though, it was so nice to sit there with the two of them and eat lunch. It's so awesome how they can make me smile and laugh even when I just want to cry. Their smiles and laughs really must be God's way of helping me forget how frustrating everything is.

Anyway, everything went fine in his surgery, but that night the tube kept trying to come out!!! I had to go to his doctor's office the next day and found out the doctor that did the procedure had put the WRONG tube in!!!! So, last Tuesday night I received another call to be at the hospital Wednesday morning to replace the tube. What was great was everything went well, but then AGAIN last night the tube started coming out AGAIN!!!!!!!! I will tell you that I have decided that chait tubes SUCK!!!! So, I've put a call into the doc and am now waiting to hear what he says this time.

Also, the mitrofinoff is still leaking like nobody's business and Isaiah has ANOTHER procedure set up for next Tuesday. The doc is going to put a sugar compound in to see if it will tighten the tube, so it will stop leaking, but he did explain that it's only a temporary fix. So, basically we are just trying to push off the huge, inevitable surgery as long as we can. You see, Isaiah apparently has to get a bladder augmentation (as well as redoing the mitrofinoff and MACE) and after studying up on it some, I found that doctors usually try to avoid doing it on small children, b/c basically what they are doing is cutting a hole in the bladder and putting a "patch" on it to enlarge it. Since the child is going to grow it raises the risk of the patch tearing away and causing really bad infections that can also be fatal. So, yeah, I'm kind of o.k. with the temporary fix!

A lot of people have said that they are amazed at how I can stay positive in all of this. Please understand that there have been a TON of tears shed, but the thing is that when you walk with Jesus Christ, He gives you peace to know that He's got the big picture taken care of. All I have to do is take Isaiah to the doctor visits and surgeries. The doctor's may be there, but God is the One in control. He's taking very good care of Isaiah and loves him more than I ever could. So, yeah, I'm still human and yeah, it DEFINITELY hurts to watch and go through, but I can have joy, b/c I have peace in Christ!

When I was single I went through some drama that I ate my way out of. I got up to 225 pounds. I started walking and was able to lose 50 pounds. It was so great! It was so simple, you know? If I felt like working out, I would change clothes, put my sneakers on and just go walking!

Then, I met and married my husband and 3 months later got pregnant with Isaiah and gained every last drop back. Since having Isaiah I have tried to get the weight back off, but I kept getting pregnant! Finally, when I had Jeremiah, I knew I could FINALLY get this done! So, I got a membership at a gym nearby and started working out at 5am, that got old and I quit that. Then, I started doing the p90x and have only made it 3 weeks. Then, Jeremiah finally got old enough to go into the childcare at the gym, so I started going to an aerobics class in the mornings, but then found out that the childcare setup was quite idiotic. Then, I dieted and so on and so on.

I was so jazzed, b/c I started out at 230 pounds and got down to 200!!! Then, this year hit. I have been so stressed out, exhausted and worn out from hospital stays. And, as I said, I eat my way through drama, so I have gained most of that weight back. It's become so frustrating that I keep trying to fight off the urge to just give up. Here's the thing, though, on December 27, 2002 I had to watch my father dying in front of me from a heart attack. He made it through, but that was the first time I found out what it meant for someone's eyes to become sunken. B/c of that experience, I decided that I don't want my children to have to ever go through that. UGH! Losing weight SUCKS!!!!!

Man, liposuction is looking better and better!!!!

I am NOT forgotten!

So, been off a couple of days. It's been crazy trying to get back into the groove of things! Especially, since we still haven't really finished everything we were in the hospital for. So, you know that the mitrofinoff (the tube to the bladder) is still leaking like crazy. I've been thinking the urologist was being kind of lazy, which seemed kind of weird for him, but then he had us come in during his lunch to try to address the issue. When we were there he finally explained what was going on:

The reason Isaiah's mitrofinoff is leaking is because when he had to put a Foley in (a catheter that has a little water balloon at the end to keep it from coming out) he accidentally put it too far, which isn't hard to do, and ended up going into the mitrofinoff and expanded the balloon in the mitrofinoff (which I knew, b/c he told me when it happened). That means that he accidentally expanded the balloon in the small tube that only a small catheter could fit in and now it's stretched out. So, he is hoping that it will contract back down on it's own, b/c if it doesn't surgery will be required. He explained to me that if it doesn't fix itself it means that he will have to redo the surgery and at that time he will just do everything over again, the mitrofinoff, the MACE and now he will do a bladder augmentation as well, b/c either the mitrofinoff is messed up beyond repair and/or his bladder is too rigid to hold his urine.

Now, it seems like, although it still sucks for Isaiah, that it would at least fix things, but here's the thing: a few months ago we had talked about doing a bladder augmentation and so I researched what that meant. I didn't like what I found. A bladder augmentation will be the biggest surgery by far that Isaiah will have ever had to go through. It is also that riskiest, by far. And if I remember correctly, it will mean that Isaiah will be in surgery for about eight hours! To give you an idea, my c-sections took about 30 minutes to an hour, Isaiah's shunt revisions and replacements took (at the most) two hours, the mace and mitrofinoff took about two to three hours when done at the same time.

But, the length of the surgery isn't what bugs me, it's the risks involved that scare me. See, if this doesn't go perfectly the first time, which I have yet to see a surgery on him that has, the complications could range anywhere from an infection to a ruptured bladder and that last one just doesn't sound nice at all! The last time it was on the table as a possibility, it felt like the weight of the world was lifted off my shoulders, when it was decided against. And now it's like BAM! Right back there again!

Honestly, and I'm sure some Christians out there may be thinking "NO! We don't tell anyone about the hard side of Christianity, b/c it may turn people away!", but it's times like this that make it so hard to believe that God hasn't forgotten Isaiah. Now, some people may turn away thinking that God shouldn't allow things like this to happen, but I refuse to punk out on God just b/c He's not giving me what I want, how I want it and when I want it! You see, this sucks, I am NOT gonna lie to you about that! Ever since having Isaiah, it has felt like an uphill battle, BUT! And that's a HUGE but (*trying not to snicker at that one!*), God has blessed me so much with Isaiah, too! I mean, that little boy has a laugh that I have never heard before in a child, that - ask anyone! - you cannot help but laugh, too! He's got this demeanor of peace that spreads everywhere he goes. He gives these hugs that, even though his arms don't work like everyone elses, makes you feel so loved and like there is nothing better out there than to be lucky enough to be the receiver of this affection!

You see? Just because I am a Christian, doesn't mean that I am immune to tough times and when I hit those tough times, it doesn't mean that God has forgotten me. See, although it sucks while you are going through the tough times, those hardships and the drama are making you a stronger person. They are also giving you an awesome opportunity to show off God's glory, by praising Him all the way through it. I mean, there have been times that I have had to ask my church family to help me keep my hands raised during it, but I can't give up! I know what it was like to walk without God's blessings and His joy. I don't want to go back there again, even if it means that I have to watch my son go through yet another surgery.

Please know that God has never and will never leave you hanging. Even though it may seem like He is nowhere near your situation, He is. Although, it's hard to believe sometimes, I know that, not only is He catching every tear that I cry, He is also crying right along with me, b/c even though I love Isaiah more than I can explain, He loves him a million times more than I ever could. And, like me, He wants the very best, not only for Isaiah, but for me as well.

Focus, Focus, Focus!

So, this morning Jeremiah had a his two year check up and it was so weird going to a doctor appointment that had nothing to do with Isaiah. I think Isaiah started getting a little concerned about the appointment, b/c Jeremiah had to get shots and when the nurse came in with the tray of needles, Isaiah started crying! It was hilarious and sad at the same time that he's so used to being in the hospitals and doctor's offices and getting poked and prodded so much that he automatically assumes that any time we are there, it's for him. I will tell you that I think I caught a glimpse of him breathing a sigh of relief when he saw the nurse turn towards Jeremiah. Jeremiah on the other hand, did NOT fare so well! He had to take FOUR shots!

It was funny though, b/c I'm so used to taking them to the doctor's offices and dealing with the loud chaos that ensues in the tiny little room that when I had to take a friends child in with me, that I was babysitting, I realized just how crazy it gets, b/c she kept covering her ears and looking for a happy place! It was funny, but she is an only child. So, any loud chaos that's going to be had, would be brought by her. It was just funny to me watching her sitting there trying so hard to find the one spot, in that tiny room, that had that small breath of peace and quiet! Welp! Welcome to the world of three children! LOL!

After all was said and done there, we picked up a friend of mine and took off to the mall. What's funny is that I hate going to the mall, but whenever I go anywhere I have to weigh the costs of loading whether or not it's worth the trouble of loading and unloading Isaiah and his wheelchair. It's sad, but a lot of trips get rejected, if they can't offer something really stinkin awesome or at least something really needed!

Anyway, so we were at the mall and we took the kids to the play area over there and it kind of stunk, b/c Jeremiah and Isabella were having an awesome time climbing in, on, and around everything and all Isaiah could do was watch from his wheelchair. I know that his perspective may not be the same as mine, but it doesn't make it any easier to watch, you know? I mean, we got a jogging stroller to take Isaiah through trails and into parks, we got him a trailer that could be pulled by our bicycles, and we got him a wagon to be able to go everywhere in between, but it's frustrating to know that it's still not the same! Think about it, when you get on a swing, you don't need anyone's help to get you swinging on it, his legs don't work. I mean, he had to get therapy just to be able to lift his head up. Isabella and Jeremiah were able to do that almost immediately after being born.

It's frustrating, sometimes, b/c I want to make EVERYTHING work for him, you know? I want to get a house that is all flat, that he can take his wheelchair everywhere. I want a yard that's flat, so he can go outside with Isabella and Jeremiah without running the risk of flying down the hill to certain calamity. Here's the thing, though...God said that if I seek HIS kingdom first, meaning if I seek first what His will is and I make His will my highest priority, He will take care of EVERYTHING else! So, if I just keep my focus on Him, then He will take care of EVERYTHING Isaiah needs, wants, everything! See, cuz no matter what I do, no matter how hard I work, no matter how many hours I spend stressing, no matter how clearly I lay out any plans, God knows what is the very BEST for Isaiah. Ahhhhh....that really takes a load off!

Thought it would be over...Silly me!

OK, so we are home and all and that's all gravy. Here's the thing, though: Isaiah is now peeing through his belly (his mitrofinoff - the tube that was created for us to catheterize his bladder) so much so that we have to wrap a diaper around him now!

I was thinking, when we had gotten home, that when we went out people would see the staples in his head, which isn't embarrassing or anything, but I'm sure it's a bit disconcerting when you don't know what's going on. But, it IS a little embarrassing that his shirt keeps coming up and showing our ghetto rigged diaper wrapped around his belly and actually being able to see that it's filling up!!!

UGH!!!! he has a surgery coming up in the next week or so to fix the MACE, but every time I try to show his doctor that he's leaking through that thing, IT STOPS LEAKING!!!!! It's so infuriating! You know how your car starts driving weird or making a weird sound or your computer keeps acting up? Doesn't it ALWAYS happen that whatever it is stops happening AS SOON as the specialist looks at it?!?!?! Then, when they leave, what happens? IT STARTS UP AGAIN!!!!! It's like, it wants you to look like you have LOST YOUR MIND!!!!

So! I texted him a picture of Isaiah's clothes, bed and belly diaper!!! HA! ARGUE WITH THAT!!!! Oops! 10.....9....8.....7..6..5.4,3,2,1....Okay, calm again.