Haley's surgery...

Haley's having surgery on Jan. 9th. All the pain she's had is from a bladder stone. I feel so bad for my girl. Watching her in all this pain is horrible. And to say that means that what she's feeling is prob 100% worse.  The last major surgery she had was 10 years ago. So it's a whole new ball game. 

I'm still dealing w/ depression and anxiety. I'm so sick of it. I HATE feeling this way. I want to feel normal. I want to wake up in the morning and actually have a desire to be apart of the land of the living. Not just barely make it through the day without at least 2 trips to the bathroom just to either stop myself from crying or cry and make it look like I wasn't crying. 

There are a million things I could/should be doing to be more proactive in helping myself. How do you do that when taking a shower feels like a chore? I've said the same stuff and gone over it all before. I just want this to stop. The weight of it all is making me sad and just disconnect.  I know all the self help..blah blah blah...that's not going to change our cirucumstances or the stupid chemical crap that goes on in someone's brain when you're prone to this stuff. So here I am.. or rather here it is...I'm sick of it. I do not want to keep feeling like this but i'm just to the point that I feel like it's never going to change. so I guess I just deal with it. ? i feel like I'm dramatic or whatever but it honestly is just how I feel. and it sucks. 

Normal? alone? no.

It's December. It was a rough year. I feel ALONE. we have had many, many people reach out, offer and give us support. 

We were blessed by the benefit given for our family. In a way I can never possibly thank everyone enough. 

Now life is back to normal? the depression I already dealt with has gone through the roof. It's Christmas time and I feel like I am just numb. 

I've posted so many things like this. I get tired of it myself. where do I go with all this? I do things to occupy my mind.. couponing. It saves us a lot of money.  I am trying to be the wife and mom my family needs. 
Honestly- tomorrow will be the same. I hate it. I hate how I feel now and how I will feel tomorrow. I hate that we can't give our kids the Christmas I would love to give them. I know it's not about the presents. But they deserve more. I can't give it to them. 
I have been a christian all my life. I know all the verses and such.. I have done everything I know to do to try and overcome this depression through prayer and scripture..
Nothing changes. Ever. tomorrow I will feel the same and I can't make it better. 

No matter what anyone tells me... or thinks.. my husband had cancer. my son is autistic, my daughter was born with bladder exstrophy and is miserable and in pain...my oldest son and youngest daughter have to watch all this happen and I don't know how to help them deal with it all. You don't get over cancer in the blink of an eye. yes it could have been worse. yes he is ok now. does that mean I don't deal with a HUGE amount of fear and anxiety because of what I watched him go through? 

I am dealing with all that. It overwhelms me. 

So this post sounds awful and pathetic. so i'll be done now. The next post will be better. 

work in progress

It's been a crazy year. I just am trying to get thought the days.

I'm working on getting a couponing blog.

I still can't sleep like a normal person. Jeremiah will be 17 on friday. I look at him and am full of love for him. He's absolutely becoming a man that I prayed he'd become, a man that will follow God. I can say though- I could cry that my sweet boy that I used to sing to is now taller than his daddy! I don't want the kids to ever stop calling Darnell Daddy.

I'm also working on getting super organized. I've been following some blogs, FB groups etc.. it's helping me get life organized. I hope to put together meal plans, make freezer meals.. make some good changes so that life in our house will flow.

Homeschooling- officially starting 2nd semester. TOOOOO much change and ups and downs these last months to have started school for Isaiah.

I am going to be (hopefully) starting a new blog.. one that is like so many I see that have pinterest buttons etc...

i'm going to bed.

Trying to get myself together.

Well I am trying to get myself together. I feel like my mind is all over the place. I'm trying to get organized in so many areas in my life. I am trying first to get my blog looking like a real blog.. start one about couponing but when I try to put it together I can't figure it out. We are homeschooling Isaiah but honestly with everything that's gone on... I'm really not starting till 2nd semester. He can't handle all the changes and honestly I can't either. 

The reality of Darnell having had cancer, gone through everything he has, how it's affected me, the kids, our entire life has hit me like a freaking mack truck and most of the time it feels like I'm stuck under it. I cry. ALOT. most of the time I don't even know why.  

The person I want to be, strive to be feels so far off. I don't want to complain and be crabby. I don't know how just naturally be happy for things I do have. I am thankful for so much. But this depression, anxiety.. what I feel is post traumatic stress syndrome b/c I've dealt with that before. I don't know how to get past this. I have faith, I have some hope although that is dwindling away. I hear all the things people are supposed to say.. have faith, pray, rely on God, etc.. well I am doing that. And I hate sounding like a broken record but I am just so tired of these huge life changing things happening to us. I'm emotional and with this depression I deal with, most of the time it just feels like I'm going to barely make it through it all. 

I'm not embarrassed to say I'm medicated. lol. or that I am going to my counselor. One that I need to see on a regular basis. 
So I'm not in a good place. I just am trying to get through really one day at a time as cliche as it sounds. 

I will be getting a couponing blog up and running soon. 

Read at your own risk. see a glimpse of how a mom/wife feels dealing w/ autism, bladder exstrophy, cancer, depression...

I wrote this Wednesday night, today we went to Froedtert(thursday) and Darnell saw the oncologist. No infection-just not healing properly. He's in A LOT of pain. He has a stronger cream that will help heal the skin where the incision and radiation are/were. It's been an a long day. What is written below is well... still true. lol. I am thankful for such WONDERFUL family and friends. And I am so blessed to be Darnell's wife and the mother to 4 awesome kids. Now brace yourself if you choose to read my rant :)




Well Darnell's been done w/ radiation for a little over a week. The site is irritating him so much and there may be an infection starting. Today he stayed laying down all day so he could just keep clothes away from it and sorta let it breathe.  he is supposed to go back to work on Tuesday. I know he has to at some point, but w/ the way things look right now, I just don't know. However, I realize that once he gets moving etc.. it may be just what his body needs???

Our benefit is Saturday. I'm excited. We have so fabulous friends and family. 

And because this is my blog and if you read my opening statement at the top of my blog that says something along the lines of " I will complain, swear, whine etc.. if you don't like it.. you know where the exit button is on your browser. Seriously. This is MY place to vent. no one has to like it or agree with it and if you judge me for it, well shame on you. you aren't living what I'm living. You aren't walking this road or feeling what I'm feeling. We have had A LOT of things thrown our way. God gives us grace and people to help us through. But I am also human. with real emotions that sometimes.. just need to come out. I NEVER in a million years thought this would be something we'd deal with. I guess no one thinks that. However when this hit, we had been ( and will always be ) dealing w/ Isaiah being autistic. Haley has bladder exstrophy. I deal w/ depression and anxiety. All the self help books and feel good sayings that I try to post in my house DO NOT help when I feel like everything is falling down around me. 

I'm trying to keep my head above water. keep up with the best ways to deal w/ Isaiah, how to help Haley go through her teenage years and having bladder exstrophy and chronic pain.. AND make sure Jeremiah and Savannah know that have just as important place in this family, it just doesn't require medical stuff. My God, I feel like shit. 
I don't want to hear" it could always be worse" guess what? this feels WORSE. Do you( whoever) know how to wake up and try and deal with a 10yr old boy that CANNOT express himself enough to tell us what he wants to eat? Or try to get him to take enough miralax so his bowels don't back up so bad he needs an enemia?? Haley's spasms hit her like a ton of bricks sometimes that it takes her breath away and I CAN'T do a dang thing about it. 
 I am TIRED of watching them suffer. Yes suffering produces strong people...etc... well as the mom, it is Hell to watch. 
And now to try and help my husband through this cancer ordeal. But oh they got it all... he looks fine...it's no big deal.. REALLY???????
35 radiation treatments.. a 7 1/2 incision and they took all the tissue down to his muscle. that's not a big deal? bull shit. He makes it look like it's all fine. He's awesome at that b/c he doesn't want anyone to worry. I admire that about him b/c I OBVIOUSLY can not do that. But cancer is now part of our reality and will be for a long time. Eventually I , as his wife, will learn to not feel afraid. He's the love of my life. I've been with him more years in my life that I wasn't with him. 
And to top it all off I am dealing w/ a situation that I SERIOUSLY so angry about I don't know that I have ever been this angry about. ugh. 
So.. I'm highly emotional, mentally and physcially exhausted and DO NOT GIVE A DAMN what anyone thinks, says about it. I know I'm doing my best. Darnell sincerely loves me JUST AS I AM. flaws and all. I really do want to get away for like 4 days- just him and I. sleep, eat some good food, watch Parenthood on Netflix. Just be. So.. I'm going to bed. I can't stand anymore of myself tonight. I am so thankful for a God that can handle all my craziness. all my emotional ups and downs and outburst. 
When I want to lash out at God for allowing things to happen, I can, b/c he can handle it, but then he provides people and family and friends that come in TRULY do right by God and by us. So yes I'm still angry but....God is big enough to handle it. He created me to be me. he know what he was doing and when i don't like myself, well actually when I take a look in the mirror.. a LONG, real look and literally can't stand looking at myself, he says " You are FEARFULLY and WONDERFULLY  made" we are made in his image. Sin and life cause all the other crap. But He doesn't change. Good thing. too much in my life changes and lately not for the good. so there you have it. Well most of it. I left out some stuff that can be left unsaid b/c God is giving me the ability to shut my mouth. SHOCKER. right? The benefit that our friends are throwing for us means so much to us. I hope as many people that we invited can come. And not b/c it's a benefit and obviously raises funds to help our family.. but to see the people that have been behind the scenes, praying. Seriously. ok. i'm done. if you made it through this big 'ol huge rant without clicking out of it, well you deserve Starbucks, because, well you  know.. that's what I would want if I was going to win a prize. Venti Salted caramel mocha. wouldn't it be nice to have a deliery service EVERY morning? 


http://www.gofundme.com/4b7e6c<object classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" width="258" height="338" title="Click Here to donate!" type="application/x-shockwave-flash"><param name="movie" value="//funds.gofundme.com/Widgetflex.swf" /><param name="quality" value="high" /><param name="flashvars" value="page=Darnell&template=0" /><param name="wmode" value="transparent" /><embed allowScriptAccess="always" src="//funds.gofundme.com/Widgetflex.swf" quality="high" flashVars="page=Darnell&template=0" type="application/x-shockwave-flash" wmode="transparent" width="258" height="338"></embed></object>

Feeling...lost

Darnell finished radiation on Monday. Praise GOD! 
At first it seemed like those 7 weeks would take forever but it went fast. Well for me it did, maybe not for Darnell.

I'm feeling so weird tonight. I don't know where to go w/ all the thoughts and feelings rolling around in my head. Knowing that the "medical" stuff is done is a relief. D can concentrate on healing. As his wife, I feel like I have watched him go through all this, trying to take care of him, make sure the kids are handling it ok, handle my own emotions... sometimes, like tonight.. it all feels like it's TOO much. I take a lot of what I hear and what people say to heart. I don't let it roll off my back. I try, but it's just not easy for me. 
We have lived through Haley's surgeries, we live with watching her deal w/ spasms and the horrible pain it can cause her. We live with Isaiah, and him acting in ways he can't control. I want to be mad and angry but it's hard. I can't control any of it. Which of course, anyone can tell you DUH, no one can control what happens. I just feel like there are too many balls to juggle. Too many hard, life changing things that we deal with on a daily basis that no one really gets. Seriously, who deals w/ a child w/ bladder spams and infections everything that goes along w/ bladder exstrophy? There is a small percentage. I tap into that group, but people we know have no idea. Trying to stay educated on Autism, specifically asperger's, how to deal with it, how to help Isaiah, how to help our other kids deal with him... I could go on and on.
Now sarcoma. another rare thing. something no one knows hardly anything about. 

The big things pass but all the little things are still there. the little things that turn into big feelings, big stressors...
I see how God is taking so much and turning it into Good things, but honestly, can he use someone else for a little while? I'm exhausted. Our family is exhausted. 

I am in no way not thankful for the blessings that have come out of the all the hard and seemingly hopeless situations. however I am human. I have real , raw emotions. I don't want to watch my husband and kids go through any more pain. that's the bottom line. so i give it all back to God. Even though I honestly am not feeling the "feel good" emotions of it, I choose to do that. It's a hard choice, but some days the little bit of faith I have is enough to get me though that day. And God comes through. Every time. 


So tonight, I'm sad and restless and really, no one can make it better or say anything that I haven't heard before or probably said to someone else that's going through a hard time. This blog is my outlet. 
honestly, i want to go sit on a beach and not think about anything. ha. not going to happen but that's ok. The video I posted ( if I did it right, is a glimpse of what radiation was like. Our awesome friend Ivan did this. 

http://vimeo.com/75454809

Way back when......

Way back when, 17 years ago actually we were bombarded with people telling us we were too young to get married. The odds were against us. We were young, poor, had a baby on the way, yada yada yada. 

   Well it was hard. sometimes I thought that we wouldn't make it through a day. But all the things people warned us about... didn't happen. We didn't get divorced. We didn't fall out of love. Instead, we held onto to each other. 

  THe things we did deal with are so FAR off from what young, married couples are warned about. We found out real fast what it's like to watch your child suffer through surgery right after birth, not be able to hold her while she was recovering. Having to leave our 2 year old little boy b/c his sister needed us, but then, so did he. Those are the things I NEVER expected to have to deal with. Yes we dealt with the money issues people deal with when you don't have a degree and a decent job.. when you have to survive on 1 income. But that is NOTHING compared to the things I have had to watch my children endure. Memories I have that will literally haunt me forever. Ok so that sounds dramatic. But if you watch your child scream, call for you to hold her b/c the pain she's in is worse than what an adult could handle ( those words are straight from the orthopedic surgeon's mouth and he's the best in the state). That WILL haunt me. I have too many memories I wish I could forget. 

Leaving my Jeremiah and Savannah when they were at ages that they were changing, learning new things all the time. things I was missing. I almost missed Savannah's first step. I missed 2 of Jeremiah's birthday's, it was 2 years in a row. 

And Isaiah. Dealing with Autism, which is mental and emotional is so different. surgery won't fix it. It took 8 LONG years to get a diagnosis for something I KNEW in my gut was there since he was 2yrs old. Again, having memories of seeing him battle and rage the war inside of him...Watching the other kids just look at Darnell and I wondering what in the world should we do? Being in the school system that did nothing but make it harder for him. Some kids, being in the classroom is what works for them, they thrive. For Isaiah-it is his biggest trigger. 

Now watching Darnell battle cancer. He is winning. The tumor is gone, the radiation is almost over. He's in pain. At the site of the radiation, is right along the incision from where the surgery was. It's a 7 1/2 inch incision that is dry and sore and he's in pain and so tired. Today Haley stayed home from school b/c she was having such horrible bladder spasms. She said to me.. " mom.. no one knows what it's like to go through what we do" They just don't know how hard it is. It breaks my heart that my daughter is feeling like this. I know one day she will hopefully understand that God has a reason, a purpose. But honestly I don't see it right now. 

we started off w/ the odds against us b/c of our age and circumstances. Turns out the birth defects, mental illness, rare cancer, depression.. all those things are the things we battle. Our marriage isn't perfect, but I'll tell you what...
I love my husband more than I could ever describe. People tell me, well they got all the cancer. he looks so good. he's got a good prognosis. All of that is true, and is a blessing. And it's the thing you say to a family dealing w/ cancer. 

Being the wife, the one that just can't "do life without HIM" feels like my world changed June 18th. It changed Jan 17, 1999. and Sept 13, 2013 ( well years before that really but that is the day we got a real diagnosis). 

Jeremiah and Savannah watch all this happen. They have to deal with this in a way I may never understand. I try to talk to them and be here for them. Darnell talks to them. Our lives, our life at home is 100% upside down. My daughter telling me that people just don't get it, that they don't understand how hard it is to live our life... makes me sad. I can't make all these circumstances go away. 

Darnell and I will be with them, next to them every step of the way. We will pray with them and for them. I honestly will probably cry my eyes out for them b/c I hurt for them. This life, is harder than I ever expected. 

But I do have hope. some days it's the size of a mustard seed. And that's all I need. God can work with that. 
I didn't plan on writing all this. But I guess I want to let people in on what it's really like to have all this going on... to not know when I can buy new shoes for one of the kids or jeans or even a decent dresser and bed for Isaiah. A room that will be helpful for him. 
This is a bit of a raw look at the inside of our life. So 17 years ago- they had it all wrong. We are in love. with each other and with our kids. We just have a s#it load of RARE things were juggling. 

Here are some pics of Isaiah's room- I want so badly to make it "Isaiah friendly" and have no idea how to do it. 

Isaiah's room- I took the pic from his doorway 

Isaiah's dresser w/ his BIG 'OL TV...

A panaromic view..