Thursday, December 26, 2013

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. 

Monday, December 9, 2013

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 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. 

Thursday, December 5, 2013

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.

Saturday, November 16, 2013

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. 

Thursday, October 3, 2013

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'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?<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="//" /><param name="quality" value="high" /><param name="flashvars" value="page=Darnell&template=0" /><param name="wmode" value="transparent" /><embed allowScriptAccess="always" src="//" quality="high" flashVars="page=Darnell&template=0" type="application/x-shockwave-flash" wmode="transparent" width="258" height="338"></embed></object>

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. 

Tuesday, August 27, 2013

Tales from an exhausted mom & Info about Soft Tissue Sarcoma

I am not going to lie or pretend I feel all good inside b/c honestly, I feel like junk. I have been battling migraines that land me in bed for a day or two at the very least. REALLY not the best timing. 

Darnell's in his 4th week of radiation. He'll be done Sept. 24th.. so a little less than a month left. He's doing well. Very tired but all things considered, he's doing well. 

If you've read my blog before you are prob familiar with my ups and downs w/ depression. It can be such a paralyzing thing. And sometimes there is no rhyme or reason to it. One day I feel so optimistic about it all, the next ( today for example) I feel like, how the hell did my healthy 35 yr old husband end up w/ cancer? Then again, how does anyone? he's not the only one. We aren't the only family facing this. but I'll tell you what, when this crap hits home, it hits the fan.  Dealing w/ short term disability that doesn't pay you( no joke, either. 1 check from them in 2 months.. there's always a check on the way when we call...grrr) dealing w/ paper work and FMLA and just EVERYTHING. The reality of CANCER.
So to recap, yes his tumor was removed. They got it all. The radiation is basically killing anything that could come back there. All good news. I tend to be a bit cynical and think well.. it's a rare cancer and now what if it comes back. that will always be there. I realize this thought process does not line up with anything having to do with my faith. This all comes from my natural, human thinking that I just can't keep pent up. 

We have some AWESOME Friends who have fundraisers in the works~ a car wash on Sat Sept 7th.. our benefit on Sat Oct. 5th. We've been blessed in so many countless ways. 
So i don't want to be a complete downer and act like all that great stuff isn't so wonderful. It is. 
I'm just still overwhelmed with school clothes and homeschooling Isaiah  and fighting this depression... and well just living. 
I do want to blog about couponing. I am finding that to be extremely therapeutic and I am trying my hardest to build a stock pile of things we use and will need. I am getting there. So I will blog about that. I am always looking for coupons. I wish I had a hook up to the Journal times or someplace that gets rid of papers.... lol.. but seriously.. 
So I am going to ask that if you pray for our family, would you pray specifically for a few things? 
~continued strength for Darnell as he finishes radiation
~ that when the kids go back to school things will go well for them
~ that I can do my best homeschooling Isaiah. We know it's right for him. I'm just nervous.
~ that the paperwork, short term disability would work out
~ and this is a funny one, but I know God well enough to know that he is capable of anything, that I would get the hookup for MASSIVE coupons. Seriously.  
~ And that God would pour his blessings and provision on Amanda Lehman, Jim and Jodi Pritikin and all the others that are busting their butts to help us. 

So i'm done. i'm exhausted. 

A little bit about Sarcoma~

Types of Sarcoma
There are more than 50 subtypes of sarcoma, and there are two basic categories of sarcoma: soft tissue sarcoma and bone and joint sarcoma.

Soft tissue sarcomas make up less than 1% of all cancer cases. About11,000 people are diagnosed with soft tissue sarcoma in the United States each year.

Primary bone sarcomas make up less than 0.2% of all cancer cases. About 2,900 people are diagnosed with bone and joint sarcomas in the United States each year, and almost half of them are under the age of 35.

How are Sarcomas Diagnosed?

A patient may see several doctors and have a variety of medical tests before sarcoma is suspected. The diagnosis of sarcoma is usually made with a biopsy, when a doctor removes a small part of the tumor for examination. The decisions involved in the biopsy approach can be complex and are best made by a sarcoma specialist.
After the biopsy, a pathologist looks at the tumor tissue under a microscope to make a diagnosis and to determine the tumor's grade (which indicates how aggressive the tumor is). The determination of which sarcoma a patient is diagnosed with should be done by a skilled pathologist with extensive background in sarcoma pathology. Results of the biopsy and other tests are typically used to provide a disease stage (which indicates how advanced the disease is in the body). Learn more about sarcoma diagnosis.

How are Sarcomas Treated?

Starting the Journey
Thoughts for Families Dealing with Sarcoma
Dr. Meyers provides a brief and hopeful introduction to the journey with sarcoma.
Sarcoma treatments vary by tumor type, grade and stage
but nearly all sarcomas are treated with surgery when it is possible. The goal of surgery is to remove all disease from the affected area(s). Some low-grade tumors only require surgery, but many sarcomas are treated with chemotherapy and/or radiation therapy in order to prevent or get rid of disease that spreads throughout the body. These treatments may be necessary before or after surgery.
The duration and intensity of sarcoma therapy can be surprising and disheartening to patients and their families, and coping with the side effects of treatments can be a challenge. Many patients and their families choose to join support groups, which can be a great source of information and strength. Families can also seek counseling and support services at cancer centers and local charitable organizations. Learn more about sarcoma treatment.

Are Sarcomas Curable?

Cures are treatments that eradicate an illness permanently. Many sarcomas are curable, particularly (a) low grade malignancies which only require surgery and (b) the pediatric sarcomas. Still, many physicians don't use the term "cure" when talking about sarcoma. Dr. Bueckerexplains:
As opposed to most types of carcinoma, there is really no time when "cure" is felt to have been definitively achieved. Sarcoma is a lifelong diagnosis, and should be treated as such. Having said this, most recurrences or metastases will be discovered within the first two to five years after treatment. Once the patient has cleared the five-year mark, the risk of recurrence diminishes greatly, but still certainly exists.
With regards to soft tissue sarcomas, typically a course of radiation therapy (often about 5 weeks’ worth) with or without chemotherapy precedes surgical resection. While the decision to give radiation before, after or before and after surgery remains somewhat controversial (or may change on a case-by-case basis), it is certainly an integral part of the treatment plan for these tumors. Logistically, it adds a component of complexity for the patient, requiring daily treatments for about 5 weeks.
For more information, see the ESUN articles aboutdealing with the side effects of sarcoma treatment andcoping with sarcoma.
Given the length and complexity of treatment for bone and soft tissue sarcomas, it is no wonder that patients often become disillusioned and frequently depressed during the process. It is important for patients and their families to understand that this is a very normal and natural response. Commonly, centers where sarcoma patients are treated have resources and/or personnel available to help patients and their families cope with such accompanying psychological difficulties.
Once the course of treatment has been completed, a necessary schedule of follow up begins. Usually, this means visits with some type of imaging and/or other ancillary testing (cardiac testing, laboratory exams, etc.) every three months for 2-3 years, every 6 months until 5 years after treatment, then annually. Many permutations of this certainly exist, and schedules are often varied for a particular patient, predicated on many potential factors, most frequently the presence of metastasis (disease spread).
As opposed to most types of carcinoma, there is really no time when "cure" is felt to have been definitively achieved. Sarcoma is a lifelong diagnosis, and should be treated as such. Having said this, most recurrences or metastases will be discovered within the first two to five years after treatment. Once the patient has cleared the five-year mark, the risk of recurrence diminishes greatly, but still certainly exists.
With current treatment protocols, many more are surviving sarcomas than ever before, and research is ongoing. Prognoses continue to improve. With these advances and the relatively long lifespan of many of these patients, the importance of long-term follow up and recognition of distant treatment sequelae becomes even greater.

Tuesday, August 20, 2013

Just keep swimming.........

We just keep swimming. Even if we, or I don't want to. I want to stomp my feet and yell at God and tell we have had ENOUGH! I am tired of watching my kids deal with physical disabilities and psychological disabilities and now watch my husband deal w/ cancer.  Watching my kids see their dad not be "normal" is so hard. Granted his prognosis is great, according to the oncologist up to this point. But Darnell still is a cancer patient. He is in the middle or radiation. All of it takes a toll. 

I don't know how we would have made it this far w/o the support of family and friends. This benefit/fundraiser is an absolute LIFE SAVER. Seriously, there aren't enough words for us to express our gratitude. So many people willing to help and support us! I just hope enough people come b/c so many people are donating awesome things to be raffled off.. they are taking time and $$ to put these things together for our benefit. 

Darnell's handling radiation so well. He's tired and the area is starting to get irritated, but so far that's all. His short term disability department at work can kiss my a$$. We have received ONE check from them. He's been off work for 2 months. I want to call someone and rip them a new one but whoever answers the phone, it won't be their fault.. it's a whole series of events that have led up to this. 
I struggle with the part of me that is a human being with raw, real emotions and I want to be angry about cancer, I want to be angry about bladder exstrophy and all the issues Isaiah faces. Some days I am angry. My emotions get the best of me. I want to shut down. But I can't. So I need to rely on God to get me past all that. It is HARD. But if I don't push through all that, I am not going to get done what needs to get done. It's that simple. 
On the plus side, b/c of all the medical bills, we hit our out of pocket limit so anything else we go to the Dr for will covered for the rest of the year. I wish that included dental. I have had a lot of work done but need a whole lot more but I hit the amount that the dental insurance will cover. Anything else I need done, I have to pay 100%. SOOO not cool. 
It's all small stuff in the grand scheme of things. 
I seriously just want to be home, with no where to go. I don't want to deal with people or appointments...

So forgive me if I'm not upbeat, positive.. but this is how I am at this moment. And I'm fighting the tail end of horrible migraine too. 

So... I do just keep swimming. like it or not. 

Saturday, August 10, 2013

What a week!!!

Darnell finished week 1 of radiation! YAY!!!

Isaiah had his neuro/psych eval yesterday. It was a LONG appointment but he was awesome and cooperated! The Dr was able to get through all the testing they needed to do. Now we will go back for results. Dear God~ please let there be ANSWERS that will lead to help and intervention! 

This week has been amazing. seriously. There aren't and probably never will be enough or the right words to thank everyone that is supporting us and praying for us. Darnell's short term disability is so behind it's not even funny. He's received ONE check since he's been off - his last day was June 18th. Yes there's tons of paper work yada yada yada but really? when he called earlier this week they said oh we are really behind.. well isn't that what your department does?? So they said they mailed out a check, well we still haven't seen one.  
with all that has gone on this week though, I know that all that is in God's hands. As frustrating as it is... I trust God. 


I swear it's an addiction. Jeremiah has already said that when he graduates and goes to college he's going to give me a list and have me go shopping for him so that I can get everything super cheap. Then his friend asked me if I'd shop for him too. LOL. If they only knew that so many other couponers are way better at it than I am. But I'm getting there. I got Gillette Shaving cream for $.67 a can at Target.  I am building up a stock pile big enough for our family to live off of and not be constantly in need of deordant or something like that. Then I also am buying things to donate. I bought 10 packages of Tena, pads women use for bladder control issues for less than $5 well prob less than that.. And then that gave me CVS extra care bucks to use in the store. I can donate those pads to Halo, a homeless shelter here in Racine. The group I'm a part of Rockin' Mommas are donating basic needs supplies to Halo so as I've been getting things for us for super cheap, I pick up extra for Halo. With the right coupon and sale, you can get so much for very little. 

I got all of that for $8.69 befor tax & saved $104.90!!

My absolutely awesome coupon binder that I don't leave the house without!

I got $10 CVS Extra Care bucks back that day to use at CVS and paid next to nothing!

Tuesday, August 6, 2013

God DOES move mountains!!!

Where do I even begin???

a little over 24 hrs ago 2 friends decided to put together a benefit for our family. Can you believe that now a little over a day later, donations have been made, a benefit has been scheduled, friends have come out and offered to help in any way they can. I am simply in awe. Not only of what our friends and family are doing, but of what God is doing. 

I have always had faith, but i will tell you what, this last few years... it's been tested, tried and some days I wanted to give it all up. I have always just said to God " REALLY?!? when in the world did I ever seem like the person that can handle all this?"   COME ON. 
Obviously he sees things I don't. I see what I can't do, what is overwhelming and scary. He sees what HE can do with these seemingly hopeless situations and does his thing. And really, who am I to question God? 
  So no more questioning God. God is showing himself. 
Does that mean the next 7 weeks won't be trying or hard? no. It means my faith is stronger, our family's faith is stronger. 
When you are a parent and a wife and you're watching your children go through things you can do nothing about it's heart breaking. And it's not just watching Haley and Isaiah go through what they do, but Jeremiah and Savannah having to watch their bro & sis hurt and cry and not be able to make it better. Jeremiah used to carry Haley home from the bus stop b/c she would have such bad bladder spasms that she was doubled over in pain. Savannah would run ahead to tell me and then Jeremiah would be carrying Haley. Savannah has ALWAYS been with Haley through it all.. sitting with her in the bathroom when Haley has to cath and it takes forever ( Haley's words)... Haley either grabs Savannah's hand or Savannah grabs hers if Haley is in pain. 
These kids amaze me. Jeremiah goes above and beyond for Isaiah. He puts up with the hard stuff.. and i'm telling you what, it gets hard. But J will take Isaiah to the store or buy him an ice cream cone, those little things that are big things to Isaiah. 
Now with Darnell's diagnosis, surgery, and now the beginning of radiation.... it's a whole new set of circumstances. But God didn't change. The cancer diagnosis doesn't go away. But, God is providing for the things we need and showing that people care and love us and want to help. 

The last 2 months have been a whirlwind. I honestly don't think that will end but I'll tell you, it IS ok. Cancer does suck but God is bigger than it. 

And now I am going to study the couponing FB pages for the freebies :) 

You can click on the links below for info on the benefit and Donation page that has been set up by our friends!

Monday, July 29, 2013

Did the clock stop?

I have been couponing a LOT lately. Getting great deals~ spending very little money to stock up on stuff. It's something that pre-occupies my mind. 

Darnell starts radiation on Thursday. I have so many emotions and mixed feelings about life right now. It totally sucks how you can be going through one of the hardest trials in life, feel so alone but life goes on for everyone else. But you life stopped. I feel like life as I knew it, stopped June 18th. When the love of your life, the person you have shared literally half your life with, have children with and simply love undeniably is diagnosed with cancer, you feel like life stopped. 

So while life has gone on for everyone else,  I feel like it stopped. I had a dream and in it I was out somewhere and all of a sudden was upset because someone said it was Halloween. I woke up and thought, that's how it feels. Or will I sort of "wake up" when it's all over? But in the dream I was upset b/c I felt like I had missed summer and fall. 

I have been trying to find resources for families like ours. It's not easy to find. You don't realize until you go through something like this how hard it is.. like all the other "stuff"....How will we pay all our bills? How do cancer patients that go through months of treatment and make it? 
2 of our kids have birthdays in August, we need to get school know.. life stuff. 

In spite of all the "needs" we have and anyone has, God has blessed us. The FB group I am blessed to be a part of~
Rockin' Mommas started a meal train and has been bringing meals for our family. Our church did it to for 2 weeks after Darnell had surgery. This is such a blessing. It's nice to not have to worry about preparing or making dinner. I see God's hand in our lives. I just have days of doubt, fear, and insecurity. 
I'm a work in progress... working towards to finding peace when I feel like life is coming apart at the seams. 

Heads up to any friends/family that may read my blog~ if anyone has said to us "if you need anything, seriously  just give me a call"... well you may be getting calls!  We need our family and friends now more than ever. So thank you for being here for us. 

Saturday, July 20, 2013

How I feel~ raw and real.

I can't believe how fast the summer is going. I had a dream the other night that it was Halloween and I was all upset b/c that meant winter was coming. 
I've said this before and I'll say it again for I go any further.. since this is my blog, if I sound like i'm complaining or whiny.. stop reading now. This is my outlet. I share b/c I've had a lot of people tell me they appreciate my honesty etc.. for anyone who wants to pick apart what I have to say or tell me how I "should" feel.. leave now. Not trying to be sassy but I am just not in a place that I need anyone's judgement or advice. 
I feel like this is the hardest season we've ever gone through. Which is saying a lot. We've dealt w/ A LOT. Haley has had so many surgeries and bladder exstrophy doesn't go away. It's always at the back of my mind that her having a UTI can pop up at any time. I don't lose sleep over it, but it's there. Isaiah is in a contant state of almost crisis. Right now we are deciding if we should home school him. I am tired of fighting to keep him in a school system that requires me to continue to fight every single year for something they should just do for him. So there's that. I worry about Jeremiah and Savannah having to watch their siblings go through all this and make sure that I am there for them. Cancer. That by FAR has taken life and stress to a whole new level. Seriously. I keep hearing, well at least it's not....blah blah blah.. well guess what? this is what it is for us. SCARY. it's rare, like not quite 6,000 men get diagnosed w/ sarcoma in the US a YEAR. Trying to deal with the fact that my husband is going through cancer treatment is hard. I'm tired of hearing about how worse it could be. I didn't want him to have to deal with this at ALL. I think i need to talk to other wives that go through this.I need to talk to other moms who deal w/ the same issues as Isaiah, I've already talked w/ mom's that have kids that have Bladder Exstrophy. All these conditions and rare things that we juggle. And I'm trying to juggle my emotions from all of it. I already deal w/ depression and anxiety. I know God is here and all that goes with that. I know that as a christian I have to listen to God's truth and not my feelings. But dang.. this crap is overwhelming. 
I hate seeing my family go thru this. 
I can't NOT feel that. The ripple affect of all of it scares me..
I feel like I'm completely failing at being a supportive wife to Darnell right now. I need to be Isaiah's advocate and get him help( which I am working on)..
Yes I need to talk to my counselor. but all of the cirumstances don't change. I know I can't change them, I have to change my attitude. Well when I figure out how to make depression and anxiety and fear go away... I can't fix that. I am working on my attitude. today however.. like I said.. this is where i'm at. 2 of our kids have August birthdays, school starts in the beginning of september.. we have to figure out how to get school clothes and supplies and shoes..those things always work out..maybe just unloading all that runs through my brain on here helps.. i don't know. I just know that I trust God but I am angry. It's ok to be angry with God. He can handle it. I'm angry and sad and I wish I had that freaking happy go lucky-life will get better- attitude. I don't. 
I want to cry. I want that horrible feeling in my stomach to go away. 
so i've gone on long enough. 
in all honesty...I'm overwhelmed, scared and mentally and emotionally exhausted. 

Monday, July 1, 2013


Darnell had surgery on June 21, 2013. They removed the rest of the cancerous tumor. He had to spend the night.  He has a 7 1/2 inch incision. It goes across his upper thigh/lower buttock.  The Dr took a lot of tissue from that area so that there will clear margins-meaning no cancer cells all around the area. He had to come home w/ a drain. it was so uncomfortable for him. But it was necessary. Otherwise fluid could've built up in that area because there is now a large"cavity" where they took the tissue out. 
The pathology report showed it was stage 1 but Sarcoma is rare. There is a grade, mild, intermediate and high. His was high. So it was a small, super-ficial tumor that didn't spread but is a high grade. He sees the Radiology Oncologist at Froedtert on Wednesday. From the reading I've done ( prob too much) but the facts we need to know from the Sarcoma Center info from Froedtert, a person MUST see a Sarcoma specialist. It's so rare that it's just necessary. I'm very thankful for Froedtert. he could have seen someone here in Racine, but why go here when we can go to the best? 
He's off work for at least 6 weeks. Maybe more depending on the radiation. 
It's been a rough 2 weeks. I feel like it's all not real. 
I am trying to be positive, to look at all the good things. To be honest.. I just can't get past the fact that my husband is dealing with this. It came out of nowhere and blindsided us all. It's so much to take in. So keeping a positive attitude is a bit hard when I'm still trying to wrap my head around this.  There are so many unknowns and it just scares the crap out of me. I try so hard to keep my mind on the facts, on what I know to be true and that God hasn't changed. But jeez.. this is probably the hardest thing I've dealt with. And I'm not even the one that is physically dealing with it. I love Darnell so much. He's my best friend. We've grown up together..and we're going to grow old together. 
Tonight, I'm just scared. For him, our kids, myself. Cancer is scary. 
I'm trying to find resources for families dealing with this... help w/ insurance when it all gets expensive.. short term disability is an extremely small amount of money to live on. so I have to research.. find out whats out there for families dealing w/ cancer. I also am couponing like crazy.. trying to stock up and get the very most out of our money as possible. I thought about trying to get a job.. but seriously.. If he's going through radiation treatments and who knows what that looks like or how long that will be.. and hello... we still have 4 children that need their mom. So.. couponing, saving money, selling stuff on rummage sale sites on Facebook.. whatever. I'll do what I can. 
I am glad he sees the oncologlist on Wednesday so we'll get some answers but on the other hand, i'm scared to death. 
I know all the " Trust God, be patient, be positive, ...stuff" All of that is good.  However, right now, facing this, I feel freaking scared. I am sad for my husband, my kids, myself.   No one can tell you how to feel. You have a right to how you feel. I tell my kids that all the time. Like, if you are angry.. ok, you can be angry. Who am I to tell you how to feel or not to feel? What you do with those feelings is what matters. I will take these feelings and lay them at God's feet. That doesn't mean I don't hate this, that I hate feeling like this and that I'm just having a hard time. I'm doing the best I can. 

This month is Sarcoma Awarness Month. another rare condition that we are now aware of. God.. I am eager to know why? I guess we all feel that way. But I'm kinda looking at it like, my daughter was born with bladder exstrohpy.. she'll deal with it her whole life. My son has psychological issues that just get worse and we can't figure it out.. I deal w/ depression and have Chiari and it causes horrid headaches but can't be treated b/c it's not severe enough. Now my husband had cancer or has cancer, I don't know what to say. Will be in cancer treatment. And my 2 kids that don't have issues have to sit back and try and deal with all this. So, yeah.. I'm pretty pissed off. I'm tired of watching my family suffer. So yes I am trusting God b/c there is just nothing else I can do. 

Sunday, June 23, 2013

There are NO words.....

The word you NEVER EVER want to hear completely turned our world upside down in the last 5 days. On June 10th ( which just happens to be my birthday) Darnell had what his primary Dr said he was 99% sure was just a cyst. He had it for years but had recently ( like the last 9mo or so ) gotten bigger. So when his primary Dr saw him he referred him to a general surgeon to have it removed. He removed it in the office on June 10. A week later, June 17th Darnell went to get the stitches out and the Dr said they had to send out the tissue for further testing. WHAT? Red flag. The next day, June 18th I get a phone call from Dr. Stoltenberg himself telling me that what we thought was a cyst was in reality a tumor.. and it was a rare form of cancer called soft tissue sarcoma. I was DRIVING when he tells me this. 
I felt like someone punched me square in my chest. Darnell was at work. They wanted him to make an appt to get a CT scan ASAP to make sure there weren't any other tumors in his chest, abdomen or pelvis. I had to call him and tell him. I regret having to tell him over the phone. Who wants to get that news over the phone? But if he needed to contact the Dr's office etc.. how could I not tell him? And when he'd call me, b/c he always calls me on a break, how would I explain why I was totally losing it? So I ended up talking to the nurse, the Dr again and scheduling everything. 
When I picked him up from work he had to go fill out union stuff, short term disability ( which I have no idea how anyone can survive on what they pay us) The next day, June 19 he had the CT scan and blood work and more paper work. The Dr called later that day to say he didn't see any other tumors, just a spot on his rib. He believes it's a calisfication ( don't know how to spell tonight)... Friday June 21st he went in and they removed the rest of the tumor and a good margin of tissue surrounding the area. They went down to the muscle, but didn't have to take any muscle. The cancer did not spread to the lymph nodes. The site where the tumor is- well right in his upper thigh or more like his booty. They sent samples of the tissues to Mayo clinic to make sure nothing comes back abnormal. His bloodwork was all normal. 
With a sarcoma, it is rare. It's HIGHLY recommended that you see a oncologist that specializes in sarcomas. So he came home today. He's sore, he has a drain so that the fluid doesn't build up and cause an infection.. 
He's off work for 3-4 weeks at least. In that time he'll see an oncologist. We want to go straight to Froedtert. There's a Dr there that does specialize in sarcomas. We met a family from church that actually just went through this. They highly recommend this Dr. At this point, Darnell's cancerous tumor is gone, blood work looks good etc. However, for something that originally was said to be 99% not cancer.. we aren't going to play around.  He's had cancer in his body.  Our world changed DRASTICALLY so fast I felt like I was in someone else's world. 
And I'm not the one dealing with the physical reality of having cancer. I am his wife, I feel like my life, the love of my life and everything I have ever known since I was 17 years old when I met him was all of a sudden being threatened. 
We had to tell our kids.. we SOOO wanted to keep the "C" word out of it.. but it just wasn't going to roll out that way. How can you reassure you children when really, you don't have answers yourself? I felt like life was falling apart BEFORE June 18th... 
Well I guess I didn't know what that really felt like until I got that phone call. 
With all this being said, I know God is in control. As freakin scary as all this is.. scarier than anything I've ever faced. We have been overwhelmed with prayers and support from our families and friends. Darnell's facing kind of rough recover b/c of where the incision is. He's worried about being off work, paying the bills, putting gas in the van all those normal life things that go on even if you have cancer or had cancer or whatever. I have faith. In spite of it all, I do. I mean seriously..I feel like God is working overtime trying to get my attention. So he's got it.
This is just my view point. I feel like this week was surreal, like I couldn't catch my breath. I can't do life without him. Now, every bump, any kind of cyst like anything that he might have needs to be checked. I feel like this will follow him forever. Well it will. Maybe because everything happened so fast, and we are still kind of going, wait, " Darnell had cancer, they took it out.. but they still need to do a bunch of stuff to make sure it's not anywhere else... blah blah blah..." Maybe when we can catch our breath I'll not feel so scared of all this. Right now, I can say NO I won't ever be ok with this. But I know that God can give us peace that passes all understanding. 
Even as I type this, I can't believe I am typing it. a rare form of cancer. we must be a target for rare things, bladder exstrophy, I have this chiari ( where a bit of my brain pushes up against my skull and they say it's not bad enough to require surgery and shouldn't cause symptoms, yet I have them) and everything we deal with with Isaiah. I don't know WHY we got picked to be the poster family for the worlds most rare things.. things that have ridiculous odds of happening. I'll be asking God the minute I get the chance once I am in heaven. 
I am going to finally sleep. Darnell's sleeping downstairs on the couch b/c he can't go up and down stairs and he's terribly uncomfortable. But he's home. He's ok. I don't know what the future holds. But a week ago, before all this, I didn't know it then either. I guess now I just got a HUGE dose of what can happen, what does happen. I need to make the choice to be in the moment. sounds new-agey or whatever but it makes sense. 
I'm exhausted. I'm drained. I try not to worry about how our bills will get paid... but Darnell's alive. he's ok. God just has to help me handle the rest. I'm good at taking care of him. I was good at taking care of Haley after all of her surgeries and all the things she went through. So I know I am good at taking care of my husband. I'm not very confident about things, but I am confident about this. So.. there you have it. My point of view. how i have experienced this week. good night. 

Monday, June 17, 2013


I know they say "this too shall pass" 
I've been hearing that and saying that for years. I think it's crap. Today I do anyways. 
We have hit some huge issues w/ Isaiah again.. 
daily life is hard. Some days it feels impossible. NOTHING is working with him. He is going through a med change right now. He goes in August for a full neuropsych evaluation. 
This is breaking my heart. Seeing my boy go through all this is the worst part. I'm prob going to sound like I'm having a huge pity party today.. well so be it. I've watched my daughter endure physical pain that broke my heart.. and know that it's not going to go away.. I can't fix it. Now with Isaiah.. I'm watching him go through this mental/psychological meltdown after meltdown. He is starting to get physical again. 
I'm drained. I have NOTHING left to give anyone. Which is horrible, I mean seriously horrible because I am have 4 children, a husband.. I need to keep it together. I can't. I really and truly can't. 
Everything else-life stuff is feeling like it weighs a million pounds. a car we need to run isn't running.. one of my meds is going to cost almost $200 b/c I have to get a 3 month supply through our insurance. I don't have it. I'm selling scarves and trying to sell things on the FB garage sales to make extra money to put towards just a medication. My girls need summer clothes.. 
I'm seeing a counselor( THANK GOD) but right now, today.. I got nothing. I pray and I cry and do it all over. I realize I am prob supposed to accept the hand we are dealt.. we've been dealing with this for long enough.. but this is me. This is how I am. emotional. overwhelmed. and scared.

Monday, May 13, 2013

The Craziness of life...

It's been a while since I've blogged....
I've been busy. This season of life is hard.
full of ups and downs.
emotionally draining.

It's not anything new really..just the same stuff that feels like it's hit a new level. Isaiah's down to a 2 hours school day. This is good on one hand b/c we can actually get him to go to school. 
BUT...that means he's home most of the time. bored. It's hard to keep him busy and he drives me nuts w/ the "I'M BORED..THERE'S NOTHING TO DO..." 

So although this is not new stuff really it's just taking a toll. I realize this is just how it is and I accept it. I am human and am worn out. 

I still am having tons of fun making my own cleaning products! Last week I made homemade febreeze, shout, oxiclean and a grout cleaner that made my bathroom floor look brand new! 
Even the kids were impressed w/ how clean the floor was. 

I also am very interested in Essential Oils. I really want to sell them but it's a huge undertaking and I don't have the money to start it up. So I just bought a few small bottles from Ebay to see what I can do with them. They're only 10ml so it's was very inexpensive. I am interested not only in how to use them with cleaning products but the more reading I do the more I am seeing how they can be so helpful in natural remedies. I bought Lavender, Peppermint, Tea Tree and Rosemary. The peppermint is supposed to be great for headaches so I am going to put that one to the test! 

We have let our Cable go in an effort to save money and I also am proud to announce that I only buy Starbucks once or twice a week! Which for me, is a huge difference!!! We are trying hard to save money wherever we can. I am still couponing and am trying to do as much meal planning as possible. I am going to have to really get on top of things w/ summer coming and having the kids home. It's hard to meal plan and buy groceries that are healthy w/o going broke!

If you are reading this, I just ask that you would keep us in your prayers. With summer coming I'm extremely anxious about how Isaiah will be, keeping him busy and just trying to keep myself together. I do my best to do everything I'm "supposed" to do when you have a child with special needs. It's just hard. I don't want to be on pins and needles all summer and I want us to enjoy it. Thanks :)

Monday, April 8, 2013

WARNING!!! I am venting... read at your own risk.

Warning.. I am venting. I will NOT apologize for what I blog about, especially not today. So if you are going to have a problem with what I write, stop reading now. 

Life has been hard. big shocker. when isn't it, for anyone? 
lately it has been one thing after another. as a mom..watching your kids go through crap is about as bad as it gets. 
Isaiah is not in a good place. We can hardly get him to school. When he's there, he does little to no work b/c he won't cooperate. 
not because he's this defiant child who just doesn't want to. 
not because he's a menace.
because he suffers from bi-polar disorder as well as asperger's. And I don't know what other mental disorders that go along with these things.
Anxiety is what is ruling his world right now.
what would YOU do if your 9yr old was so overwhelmed by anxiety that he can barely walk out the door to get on the bus? 
When he gets to school the teacher has to coax him off the bus? 
I could go on and on. Anxiety is real. It sucks. It sucks a little bit more when your 9 yr old is suffering from it. The way is presents itself is through anger, frustration etc...
Medicine helps but by no means makes a big enough difference. 
So now.. we have to decide on a daily basis whether or not to send him to school based on the facts.. will he be able to make it to school and not hurt himself or someone else? 
His special ED teacher is an ANGEL FROM HEAVEN! She's awesome! 
She gets him. thank GOD. 
We're having an IEP meeting to decide the next step. when he was younger and all this happened we had to keep him home from school and a teacher came out to the house a few times a week. That worked wonders for Isaiah.
Somethings gotta give. He can't go on like this. 
I can't. Our family can't. 
I'm drained. So drained and heartbroken for my boy. 
I am trying my best to find help for him.. I am hoping to find something for him to do in the summer. 
I'm overwhelmed. I've dealt with my own anxiety lately.. all this is just too much sometimes. well all the time. 
Just when I thought Haley was over the spasms for awhile.. they started again Saturday night. Hit her like a Mack truck. Seeing her in pain, cry so hard.. is heart wrenching. She doesn't understand why. She's dealing with physical pain and emotional pain. She wants to know why she has to deal with this. 
When she was a baby and would have pain.. I had a bit of comfort knowing she wouldn't remember any of it. 
she's feeling all of this and remembering it and realizing that this is just part of her life. 
Now how the hell do help her feel better? yes I pray for her, with her.. however seeing her go through this is so hard. It's harder than I ever thought it would be. 

so much to deal with. I also am a mother to 2 children that don't have any major issues and I feel like they are getting less of me.. I'm so consumed with all these feelings of guilt and fear and I just don't know what to do with it all.

Yes I trust God. yes I know he's here. however right now I am not feeling it. And yes I know it's not about how I feel. I've heard it before. I have said it before to other people. 
This is just me being real. as real as it gets. vulnerable.. honest.. and letting it all out. 
like it or not.. this is where I am at.