Thursday, September 26, 2013


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.

Tuesday, September 17, 2013

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..

Friday, September 6, 2013

so much going on....

The kids went back to school this week. Haley started high school. wow. that doesn't seem possible. We started homeschooling Isaiah. Well kind of... We see the neuropsychologist next week to get the results of his big 4hr evaluation he had last month. With what she has to say about all that, we can go from there. There are a lot of gaps that need filling. 
I don't know exactly what he's capable of. I don't know how he learns the best. There's so much I'm glad to be finding out. In the meantime, I am looking on all these homeschooling websites and blogs and Pinterest.. trying to find planners and ideas etc.. I have to say.. I'm on overload. 
I love to coupon. I save us a lot of money but that is a lot of work. I need to get organized a little more, and pick a day or two that  I spend awhile looking for the deals I want to get, put it all together and leave it at that. 

Darnell's radiation is going well. He's got a little over a week and a half left. He's tired. I think he's a lot more tired that what he'll ever admit, but it's just the way he is. I can't fault him for it. The last 3 months have by far, been the hardest, longest, weirdest EVER IN MY LIFE. My mind doesn't shut off. My emotions are up/down up/down..I do my best to focus on what I know to be true. I know God doesn't leave us in the midst of the storm. I don't understand why he allowed it. Especially when we were already dealing w/ enough. However, it really isn't something I need to concentrate on. Sure doesn't change anything. Figured that out real quick. 

I'm exhausted in every way possible. I just don't feel like I can keep up. I've said this before, but I can't wrap my mind around Darnell having Cancer. it's that word. that horrid, life altering word that turns people's world upside down. He has a good prognosis but no matter how you shake the dice... it's cancer. radiation. MRI's..all of it.. so much. How can this be real? Almost 3 months after he was diagnosed I still can't believe it. My heart is still broken for my husband. My human emotions kick in and that's how I feel. I find it hard to not be emotional. I do have faith.. that hasn't changed. Being a human, a wife, and dealing with this, I feel scared and sad and broken. 

So.. I need to go to bed. I haven't sleep normal since June.