God is GOOOOD!!!!

So....I made some choices today. Good ones. I have been dealing w/ some really really BAD depression lately. I felt like I was in this horrible dark tunnel that I couldn't get out of. My dreams were horrid, it was BAD. Today I had to get up and get moving b/c D had to work. I went to Nikki's, which was a great thing. I got to hang out w/ her and the girls and it got me outta  my comfort zone (home).  Then the rest of the day got better. This evening I was driving. I will pray out loud when I am driving by myself. Well I decided that enough is enough.The only one that can control my moods and behavior is ME. I have a choice. I do not have a choice over the medical issues my kids have, however I do have a choice as to how I deal w/ it. I know for a fact that I am good at research, I am good at knowing the facts and being an advocate for them. Well if I am wallowing in self pity, how can I be a good advocate? So.. with all that being said, I am making some choices to improve my attitude. Yes we have obstacles, and all that jazz. But so does everyone. That is why God will carry us thru. That is why we can lean on him to help us and gives us people to be there for us. 
The next month or two are kinda up in the air w/ Haley. But I'm not scared. When I look back to what we have gone thru, what her little body has been thru... I know for a fact , without a doubt that God is faithful and will see us through whatever is ahead. I am not saying I'm perfect. I'm not saying I won't have my days, I'm a human mom for crying out loud, but I am saying I am making better choices. 
I am so thankful for the people God has put in my life. All Glory goes to God!!! 

Monday again

Do any other mother's notice that you don't pour yourself a full cup of milk/juice etc.. anymore b/c you are so used to pouring for your kids? lol.. last week I caught myself doing that. I thought, oh, I'm an adult, I can have a full cup of milk! Another thing I have noticed that in 14 years, I have not had a purse that has had "normal" things in it. My purse can at any given time have, wipes, little girl bracelets, catheters, dinosaurs, you get the idea. There are some days that I just want my space. I have found that I am the kind of person that I NEED my own personal space. I think part of the reason I am so irritable and crabby is that this weather has been crap, I can't wait to open the windows, get out on our porches...
I have a lot going on right now. A lot in my head that is just rolling around and I just don't know what to do with it. I have downloaded some worship music so I can quiet myself before God, give it all to God. I'm still struggling. I still have hope though. My kids will do something so funny, Isaiah will cuddle up next to me w/o me asking him to ( it's rare! lol) Darnell is so good to me, especially when I have migraines. They wipe me out. I am very blessed. And the view we have of the Lake is getting better as Spring s-l-o-w-l-y comes to WI. 

Good day!

Well I am going to try and re-write what I blogged last night. I accidentally erased it when I was editing the format of my blog. 

Yesterday was a great day. I babysat Ruby and Annabelle. They are so fun to watch. Haley had  a half day so when she got home she was a huge help!  I put in a DVD I found from 2006 that I made of my girls. They were so little. It made me sad because I miss those days, however seeing them grow into young women is awesome. The time goes by so fast. I got into a cleaning kick and then Haley followed suit. She had my bandana on and she was on a roll!!!! She organized the coat closed, cleaned the living room... then she had one of the twins on her hip. It was like a glimpse into the future! She definately has those mothering instincts. Being a mom, watching my kids grow and is such a blessing. It's challenging, but oh so worth it. Some days I get impatient and crabby, but my soul purpose is and desire is to be a good wife and mom. I here myself complaining and crabbing so much~ when really the blessing far out weigh the junk. Each one of my children are such a blessing to me. That's all for today. 

P.S. i hope you can read this Jen, LOL LOL LOL

neverending......

Well to say that I am stressed would be an understatement. When we saw Haley's urologist last week they gave her medicine that would turn her urine orange. So if she leaked any urine thru her urethra it would be orange and we would know for sure. Well sure enough, we saw orange. So we go in 3 weeks for a urodynamics test that measures a bunch of different things w/ her bladder. Then probably surgery? who knows. In the meantime, Isaiah's been having some hard days at school. Last week 2 days in a row the boy kept his coat and back pack on and repeated "I WANNA GO HOME" for 4 hours!!! Thankfully his teacher didn't give in. I just never know when he's going to have a bad day or a good day. I think part of it right now is although Darnell's schedule change is good, it's still change. Good or bad change throws Isaiah for a loop and it comes out in his behavior. 
I guess I am really feeling the weight of having 2 kids with uniques special needs. I know that I have awesome support, Darnell is the best. He goes above and beyond what I have seen any husband do. But for me, emotionally and mentally, this is all so draining. It makes me feel weak. I feel like I do what I have to do, and then I just want to do NOTHING. Which of course leaves me feeling like I am doing everything half assed. I do cast my cares on God. I do pray. I journal(well blog) and I still feel like I'm struggling. My to do list is neverending. The medications, the applications for more help for Isaiah, IEP meetings, now trips up to Children's...I'm overwhelmed. 
I do want to be positive~ we are loving our new dog! He is such a blessing to our family. He's so loving, he's adapted so well to our family. He's potty trained, he loves to cuddle. He's hilarious!! He barks at doorbells, and the vacuum cleaner. He cries whenever anyone leaves. It's so fun having him. Haley, Savannah and Isaiah got baptized on Sunday. That was cool. I'm proud of them. 

Well I'll be done for the day. 

First gorgeous day!

Today was the weather was GORGEOUS!!! I got up at 4:30 a.m. crazy I know. I don't know why, but I got up and took a shower and then got the kids up and ready for school. Took them to school and went to Starbucks. Came home and went back to bed for a couple hours. Then went to lunch w/ Darnell. I have had this list in my head of all these things I need to get done, annoying things I have been putting off. Well over the last week and a half I have been slowly chipping away at them. Feels good. I am feeling good about getting this stuff done. Last night I typed up a summary of sorts on Isaiah. I am applying for services for Isaiah, things that aren't covered under SSI but things he needs. And I want to be as accurate as possible in how I explain his history and his specific circumstances. Then it also occured to me that this is a great way to document his progress and keep adding to it. That way my brain doesn't have to remember every single detail. I can hand a copy of this summary to whoever asks me to explain Isaiah to them. It feels good to get it all typed out and out of my head in a way. When I am trying to explain it all to someone, I always forget something, I get nervous, I mix up my words ..etc... Now all I have to do is find Isaiah's birth certificate and I can mail it all in. I think I may just go get a new copy. It is just easier then tearing my house apart looking for it.
I also got half of our basement de-cluttered. According to Darnell, our basement is clean as a whistle compared to so many basements he goes into that are absolutely disgusting. But I guess I set a higher standard for myself. So... anyways... I must go put groceries away. sounds fun right?

Busy day...

Well, today was quite productive. I got a lot of those annoying things done. It was Darnell's first Monday off. It was weird, but nice. We went to Starbucks. Isaiah had a rough morning. It took until 11 a.m. for him to calm down. Poor kid. His schedule is all out of whack. I took the dog for a long walk downtown. I love walking downtown and even more so with a puppy dog in tow! lol... I made some phone calls, I had to take care of some school loan stuff that has been taking forever...Then I got about half way thru cleaning thru a bunch of junk in the basement. Needless to say the stress of tomorrow is creeping up on me. It doesn't help that I have to go by myself. I completely understand that Darnell has to work... It just is emotionally draining. Well I just will suck it up. God has my back. I feel some days like such an outsider to so many people. Like where do I fit in? I am a 30 something married mother of 4. Remember that show from the early '90's "Thirtysomething?" Those people seemed more on the end of the tail end of being 30 something...but whatever.. but now I am going on 34. My youngest child is 7. It is hard for me to get involved in much because we live a life unlike just about anyone I know. Unless you have a child w/ issues like Isaiah, it's hard to explain. When he gets home from school, our schedule is sorta set in stone. Some days I find a lot of security in that, other days I want to run for the hills. depends on my mood, lol. I am not trying to complain...I just need to vent... I am thankful for the family God has given me. Thru all the trials and issues, I wouldn't trade it for anything. Darnell and I have a marriage that is strong and passionate and solid. We laugh, our kids have fun together, and thru it all, we all know God is behind it all. so even though I'm stressing... I know from experience that this too shall pass.

The other issue on my mind ALOT is my weight. I am sooo insecure about it. Yes I know it's not all about that. but hey, I had gastric bypass, I lost a lot of weight, and then gained some back. I am trying to lose it. I find it hard to stay focused. Some days I could just care less, then other days, like the week before last, I went 6 whole days w/o eating solid food and survived off of protein shakes. Why are women so complicated? If I ever figure it out, I may just become a millionare!!

Well I am done rambling for the night.

6 day fast!!

Well, it's been a weird week. Today is day SIX , yes 6 , that I have gone without solid food and only consumed liquid protein shakes and water. I am doing this in an effort to break my bad eating habits and cravings. Tonight I was craving carbs SOOO bad. I am feeling REAL hunger for the first time in a while. I think a lot of us, those of us at least that deal w/ weight issues, only feel real hunger once in awhile. This kind of fast forces you to let your body get to a point that you feel hunger. NOT starvation, but just hunger. Normally, we have cravings, we eat, we graze all day and nimble on this and that and never really feel hungry. Well let me tell you, I feel HUNGRY!!! But the funny part is I don't have an appetite for any particular food. I know I need to start eating real food at some point, but food just doesn't appeal to me. I have a few ideas why. First of all, the headache med I'm on decreases your appetite. So that's one thing, plus I'm stressed. Usually I tend to lean the other way and eat like there's no tomorrow when I'm stressed but w/ not knowing what's going to happen when we see Haley's Dr. next week, I am really stressed. The only vice I've had is starbucks. I could live off that and be perfectly happy. I'd probably be so unhealthy..lol.. so anyways.. to be continued....

During the days I feel like I just veg out. But from 2 p.m. on it's non stop. Once the kids get home, we are on a schedule. Especially now that I have a visual schedule for Isaiah. I have to stick to that for his well being. There is no room for me to be lazy. And to be quite honest, some days I just don't want to do homework, especially when his attitude is less than pleasant. But I need to be an example. I have that thought in my head- how can i be an example when inside I feel like a hot mess? Well I am slowly checking things off my to do list. That helps a lot!

Jack! Our new dog. I LOVE LOVE LOVE him! He's sweet and fun and silly. Quite therapuetic for all of us. I love hearing the laughter in our house. I love hearing our kids laugh, I love watching them play scrabble together on the ipad, or play checkers...They all still are close. Even w/ Jeremiah and Haley being 12 and 14 and getting to be in the teenager zone, they still spend so much time doing family things. It makes me feel like they are forming lasting memories. I hope they pass those on to their families some day!!!!

Well I am going to finish watching THe Biggest Loser and hopefully get some motivation!

We got a dog!!!!

We got a dog!! We adopted him, his name is Jack. He's a 2 year old cocker spaniel. He's the sweetest most loving dog! I prayed for a special dog, and we got one!! I think I am more excited than the kids, lol. This is a great age for them to have a dog. I think Isaiah will be the only one who can't take him out to go potty. I think having an animal can be so therapeutic. I am hoping it will be for Isaiah. It's killing me having to wait till the 15th to find out exactly what is going to happen w/ Haley. From what the nurse said, the Dr said it sounds like things need some fixing. So... that obviously means surgery. The big question is, how big of a surgery? how long will the recovery be? Will Haley have complications like she did when she was little? Darnell put it pretty bluntly, we are going to plan for the worst and hope for the best. From experience, I'd rather be prepared and not have to worry about babysitters and all that than be up there scrammbling, trying to be there w/ Haley and also know that my other kids are ok. I want them to have some kind of stability during the chaos. if that's even possible. We will try! And in some respect I am glad to finally be at this point, get this surgery over with. We knew at some point she'd need it. So.. we'll see. Nothing is even set in stone yet.

We are blessed w/ AWESOME family and friends, so I know all will be well.

Things are looking up!

It's Friday! I am glad it's Friday and I am glad it is March. This month Darnell starts his new schedule and will be off on Sunday, Monday and Wednesday's. So that means he can come to church again. I can't remember if I blogged that I spoke w/ the nurse and that Haley will probably need surgery. We knew this was coming. I know she is in God's hands. But I'd be lying if I said I wasn't stressed out a bit. However I am trying my best to do what I need to do, get all the loose ends tied up so that if she for sure goes into surgery I will be prepared. We have a great support system. For that I couldn't be more thankful.

My good friend Jen Powell has been helping me get things going w/ Isaiah. I finally will be getting some respite care, and in home thearpy, well hopefully. I got the ball rolling at least. And I made Isaiah another schedule. Jen showed me how to do it. I bought I laminator, who knew those things were so cheap and so fun! lol... But Isaiah loves his schedule. He asks for it. He loves being able to see what he's going to do and what's next. It makes transition times go easier. I will be happy to have respite care for him though. It will be with family though. I couldn't send him off to strangers, no matter how badly I needed a break. But I think sometimes he needs a break too. Especially when we have running around to do..that stuff drives him nuts. It will be nice for everyone.

Since we bought the IPad.. it has been awesome for Isaiah. There are tons of apps for kids that are autistic. Because they have such a hard time communicating, some of these apps helps them communicate. It was money well spent.

OVERLOAD

Well I talked to the nurse from the urologist office today. She spoke w/ the Dr. From looking at Haley's history, it sounds like some things need some tightening up where they "re-wired" her. This Dr, Dr. Mitchell, isn't her regular urologist. Dr Balcom is. He's awesome. But Dr Mitchell is prob the 2nd best bladder exstrophy specialist in the country. There have been procedures named after him. He retired here in the midwest and has spent the last 5 years working "part time" at children's hospital. So he knows what he's talking about. So it looks like surgery is going to be on the schedule pretty soon. I have mixed feelings about this. I knew this was coming. It's just been so long since we've dealt w/ it. the kids were younger, we didn't have to explain things to them, ..

I feel like I have a boulder on my shoulders.. I'm concerned about not having a 2nd vehicle... we travel back and forth so much when she's up there.. now I'm wishing we would have bought a 2nd vehicle w/ our taxes, but we needed a new stove and fridge and obviously I couldn't predict all this. Trying to keep up w/ our other kids, be there for Haley.. I feel completely overwhelmed. I know God will give me what I need. He always has. I'm glad I have time to prepare. There is a chance we could go up there and they could say, oh she doesn't need surgery. In that case I may be sorta pissed off b/c if she's leaking now, chances are it's not going away and we specifically told the Dr that we want this taken care of now.

I feel like I want to scream, cry, run away, sleep, I know I am over the top right now... but oh well... it is what it is. If I don't get all this off my chest, I won't sleep good, and I feel like my mind is going a mile a minute. Tomorrow I will come back and read this and think geez Melissa, what a whiner, lol...oh well. take me or leave me. I'm just a mom, trying to get thru some rough stuff w/ my baby. yes she's 12, but she'll always be my baby.

Haley

Well here we go.....I'll warn you, this blog entry is kinda like one of those times where you just need to get out all the crap in your brain. I apologize ahead of time for what my come out of my head, lol. Well Haley is leaking from her urethrea. totally spelled that wrong. That is NOT suppose to be happening. It's been happening a lot all of a sudden. This has shot fear straight thru me. She had a HUGE surgery 10 years ago... she doesn't remember it. She has a roadmap on her belly of scars, and doesn't remember why they are there. We knew at some point she'd need surgery. I thought I'd be fine, well, I'm not. I'm waiting to hear back from the nurse. The first step is ultrasound, X-ray, some other tests... I emailed another female w/ bladder exstrophy who is an adult and she needed a revision surgery at Haley's age because of the same issues. She pretty much chalked it up to puberty. As if acne, periods, attitudes, mood swings, akwardness..yada yada yada..isn't enough, through in surgery along with it. WTH?????? I will admit I am being a bit dramatic. but guess what, this is MY kid, my baby girl. I have watched her suffer, we have seen her go thru hell and back on more than one occasion, and she didn't even know what was going on. Now that she's older, there is no telling how she will handle this. I talked to her today, I wanted to prepare her. Because once we start talking to Dr's and nurse they will be talking about possible surgery and all that, I do NOT want her to hear about a possible surgery up there where she can't process it. I wanted to explain it to her when things are crazy. I asked her if knowing something, not everything of course, makes her feel better, and less scared. She said yes. So that is good. I know that we can give her info on an as needed basis. This is her body after all. She's getting to the age where we can tell her what's going on. And, to top it all off, we could go to Children's, do the tests and they could say, "well, let's just montior this..." bull shit She's been dry all these years. We did not watch her suffer for almost 2 years to be dry just for her to deal with leaking and feeling like she's wetting her pants at age 12. This age is crucial. So much goes on in their minds and self esteem develops at this age. I don't want this stuff to have a huge negative affect on her. The thing w/ BE(bladder exstrophy) is that surgery is inevitable. So we are of the opinion, if it needs to be fix, fix it. ASAP. I don't want to wait. Unless there is some really good medical reason that they shouldn't fix this soon. Get it over with so my daughter can go on with her happy life.

My emotions are all over the place. I'm nervous, anxious, scared, and a whole bunch of other stuff I can't put into words. I know God has a plan. I just can't see it right now. We could go up to children's hospital and come home the same day and go on like normal. The crappy thing is that at some point, she will need this surgery. so..obviously my mind is all over the place. I won't even let my mind go to how all this will affect our 3 other kids... that's another blog.