Saturday, April 30, 2011


Yesterday and today were actually nice out. I am so ready for nice weather. It will be May tomorrow, it should nice out by now. I feel like all I blog about is Chiari. well right now that is so consuming. 99% of the time I have a headache. And I feel pressure in my head that is painful. So far there's nothing I can take to help. It's very frustrating. I have been doing a lot of reading and I have found that the more I do, the more it triggers a headache. Fabulous. I guess it's just going to take time to get used to all of this. 
Spring Break is over. Kids go back to school on Monday. YAY!! It was nice to have things relaxed, but the weather was so crappy that it was no fun. I am PRAYING that Isaiah doesn't have a hard week. 

Monday, April 25, 2011


I am NOT sorry for being Me. Who is that? Exactly? I am a wife to an awesome husband, a mom to a 4 great kids. I am an almost 34 year old woman. I am a christian. I do not believe in religion, I believe in a relationship with Jesus Christ. He is my savior. Without Him, I would be lost. I live in WI, I hate it. I truly hate this state, but our family lives here, so here we are.  I am 99% sure I'm addicted to my iphone and macbook. 100% I'm addicted to Starbucks, I think my kids are the best kids on the planet. 
Those are some basics. I have Chiari Malformation. I do not yet know what that means for me. I have all the symtoms. Right now, I am broken, sad, confused. I don't know what the future holds. I know God is in control. That brings great comfort. I won't lie and say that I am dealing with anxiety and fear about all the unknowns and knowns of CM. Surgery is a probable known. I realized today that I am NOT sorry for the feelings I am feeling. I know God is in control and I also know that God gives us our feelings and ways to deal with them. So...I tend to always be sorry for how I feel, sorry for everything really. However, I am not sorry anymore. I got a life changing diagnosis 2 weeks ago. There's no way to escape that. So...I am going to keep my eyes on the Lord. However HE has given me the ok to just... be.. ME. I have never felt that. I have always done a great job of beating myself up. Well, that's over. I will feel how I will feel. I am done worrying about what others think. It's just too much work. I want my kids to love me, to think i'm awesome, not somebody i barely know. i want them to see the real me, to be proud of their mom, to know they are loved and cherished and adored. To know that even though we have had more than our share of hardship, we love the Lord, we serve God, we love our kids. They are the ones that are really watching me. They will have the memories of me that will last...I pray that God will give grace and help me to be what They need me to be. That is what I care about. So, I am getting off my soapbox now. Well almost.
I'm not a skinny minny, I'm not gorgeous, I don't have outstanding talents, I'm not hello miss sunshine. I'm just fine with that. Im actually good with that. Better than that. Because God, The king of Kings made me this way. 

Wednesday, April 20, 2011

Take me or Leave me.

I have decided, that I am just not the person I wish I could be. I tend to be or want to be the people pleasing person. I do not like it if someone is mad at me. I don't like it if I can't help everyone that asks. And what's worse, I can't help the issues my kids have or that I know have. I admittedly can not just "deal with" my diagnosis of chiari malformation and move on w/ my life just 10 days after the diagnosis. My head is still spinning. I still want to cry. It hits me that this is a chronic illness. I will deal w/ this for the rest of my life. I am only 33. When I am told that I need to avoid regular things, when I don't know from one day to the next how I will feel, is extremely frustrating. and honestly, I will deal with it in my own time. I do believe God will help me work thru this. But I am who I am. God made me this way and fighting it just makes everything  worse. Darnell is always telling me why do I try to be like so and so, or worry about what other people think? Well I am have gotten enough situations thrown at me that I just have to worry about what what goes on under my roof. It's so exhausting thinking and worrying about everything else.   I'm not complaining, just stating facts. And since it's my blog, I can do that. I am trying my best to juggle a lot. Darnell is a major source of my strength. 
I am facing a whole lot. a whole lot that I don't even know about yet. So forgive me if I am not myself, if I seem crabby or pessimistic, but this is a big blow for me, my family. I'm handling it the best way I know how. I have many tools, many outlets, many friends and family members that are here for me. My blog serves as my outlet to unload my what my brain is holding in all day. so that's that. take me or leave. love me or hate me. I'll I can do is do my best. My heart is always in the right spot.

Further reflection

Today was another LAZY day. I have had more lazy days in the last week than I can remember. Thanks to my amazing Husband. Everyone deals w/ stress differently. For me, I tend to shut down for a bit, then I pick myself back up again and do what I need to do again. My diagnosis of Chiari diagnosis has most definately changed me. It will change the rest of my life. Sometimes for the worse, sometimes for the better. I wonder a lot why God has chosen our family to deal w/ these different challenges. But trying to figure it out is like trying to find a needle in hay stack. If I am to know why, God will show me. Until then, I need to do what I can do. 

I am coming to terms w/ the fact that I am not, never will be and am ok with not being the "normal"  housewife and mom. I am the mom God wants me to be. If I were anyone else, I wouldn't be right for my family.
I am SOO looking forward to spring. Granted, this year I have to do some things a bit differently~ I need to be aware of my symptoms, such as the neck pain, dizziness, extreme tiredness, and of course the infamous headaches. I have read that I need to not do any heavy lifting, heavy cleaning.. stuff like that. On good days though, I hope you do normal things. I'm only weeks away from being 34 for crying out loud. 
       I know God is in control. He's got his reasons. I am done questioning him. I've learned the hard way doing that just frustrates me more. 
And I may sound like a broken record for awhile, but it is my blog, my venting space.. so I get to vent, lol. I appreciate so much of the support and prayers  we are getting. If friends and families that are prayer warriors are reading this, please please pray would you be willing to pray for a few things for us? 
We need a 2nd vehicle in worst way. 
I need to find a way to connect w/ all 4 of my kids and meet their emotional needs during all this, in a way that is good for them. 
and probably selfish request, I really would LOVE a patio set for our porch. ( that's just something fun) and last but not least, for Darnell. That God would give him what he needs to help him thru this, friends he can lean on and ways to deal with all this w/o feeling like he's stressing me out. 
thank you. I know that despite the trials, the blessing far outweigh the trials. And for that i am so blessed. 

Sunday, April 17, 2011

spring time soon??

For months I thought it was me, but with all the reading all I've been doing I have found that my short term memory is affected from Chiari.  Wonderful. There are sooo many things that this affects. At least now it explains all the synptoms  I have been having for forever and couldn't explain. 

I do realize I need to get myself together. I have lived my whole life w/ this, and I have to continue to. Now that I know why I feel crapppy I will deal with it. Part of me wants to just deny it. Pretend I do not have it and that I am fine. However having headaches 90% of the time would make that near impossible. 
I am glad spring is almost here. I say almost because it snowed yesterday. It didn't stick but still. Having nice weather will definately help my mood. That will make a huge difference. I need to concentrate on the good things in my life. This diagnosis doesn't change all the wonderful things in my life. I still am unbelieveably blessed.  

Saturday, April 16, 2011

Ranting and Raving.....

I joined a Chiari Malformation forum. It is very helpful to communicate w/ other people who know what I am going through.  Last night it hit me that I am only 33, I feel like I am wayyy too young to be diagnosed w/ some weirdo condition that causes so many odd synmtoms. I can't even spell, haha. I guess I'm just angry. There is just NOTHING normal about our family. yes I know what is normal, really? but come ON... 3 out of 6 of us in our family have these medical issues.  I think the word of the day is anger or maybe frustration. I know I have to accept this. But I still feel like it's not real. Until my head starts to hurt, or my feet go numb or tingly after standing for a little while, or the light outside hurts my eyes or my neck hurts like crazy...All the dumb pain I have reminds me that I do, in fact, have Chiari Malformation. A week ago, I thought all this stuff was just....normal? I don't know what I thought. But I was perfectly fine not knowing.  What is the standard time to feel like you got hit by a mack truck? How long will I feel like this? 

I'm scared of the surgeries I may face...the other conditions that go along w/ CM....and just the fact that there is something not right with my BRAIN. Is it just me or isn't that ALARMING?!?!?!?! My brain and spinal cord?  Well I'm done now. I needed to get that outta my brain damaged head, lol. 

Friday, April 15, 2011


This week has been a whirlwind of emotions. Obviously I am THRILLED that Haley does not need surgery.  That is a huge blessing and I am so glad my sweet girl can go on being a 12 year old girl that has spring break to look forward to and not surgery. Yesterday we got the letter telling us that Savannah got into the Real School, which is awesome. So now Haley and Savannah will be there until they graduate. I'm very happy about that!
My emotions on the other hand have been all over the place. I feel as if I just want to scream!!! This stupid Chiari malformation that I have is weird and hard to explain yet leaves me feeling like crap a lot of the time. Trying to be technical when explaining it is almost not worth the effort. In plain english, I get headaches that make you want to punch your fist thru a wall, fatique that does not go away, other nagging things like weird numbness and tingling in my hands and feet, horrible neck pain. I have been dealing w/ all this for months and have just dealt with it. If I had mentioned to anyone any one of these things I would have sounded like a nut. Now when you put them all together, it makes sense. So hooray for me, they fit. But it's SOO hard to find the right meds to help w/ the headaches and neck pain.
I'll be honest, I'm not exactly the queen of being positive. And I'll just be real, this week, I am far from positive. Just not feeling it. However today I woke up today without a headache which is great. That I am thankful for!! Darnell is awesome! He's let me rand and rave and cry and sleep when I need to. I will get back into a groove. I'm thankful for a husband for giving me the time I need to deal w/ this.

Wednesday, April 13, 2011

Dealing with it.....

Haley does not need surgery. Praise God. They filled her bladder up to capacity and we could see on the XRay that there was NO leaking. So I am claiming God's healing over Haley. 
I made my appointment w /the neurosurgeon. And so it begins. I have been hearing from everyone their opinion and advice as to how to handle all this. Be positive, at least you know now why you have headaches, etc...All very valid points. Very logical points. Right now, my emotions are sort of running amuck. My mind is running a mile a minute w/ all the what ifs. I've see how this condition can play out. My aunt has suffered w/ it for years.  So right now, my head is still spinning, I'm still freaked out. And I still am dealing w/ the physical aspects of this. I don't have the right meds yet. So these dang headaches are still there. I have had neck pain for quite awhile, and never associated it w/ the migraines. Turns out it's a symtom.  I feel like I just got slammed w/ a 2 X 4.   So for my friends and family, please don't think I'm being a drama queen or having a pity party. This is serious. It's a huge blow that I have to deal for the rest of my life. I thought I was overwhelmed w/ dealing w/ Isaiah's issues and Haley's and now this. I need prayer, grace, space, and understanding. I know God is in control. I'm am just trying to figure this out. So when I say I can't do something b/c I have a headache, I really do. And it's not just a regular old headache. I'm not trying to go on and on... I just want to be clear. So...that's all for now. 

Monday, April 11, 2011

An Epic day in my life

Today I was diagnosed with this:

Chiari malformation (kee-AHR-ee mal-for-MAY-shun) is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Chiari malformation is uncommon, but improved imaging tests have led to more frequent diagnoses.
The adult form, called Chiari malformation type I, develops as the skull and brain are growing. As a result, signs and symptoms may not occur until late childhood or adulthood. The most common pediatric form, called Chiari malformation type II, is present at birth (congenital).
Treatment of Chiari malformation depends on the form, severity and associated symptoms. Regular monitoring, medications and surgery are treatment options. In some cases, no treatment is needed.
For me, this is brutal. My aunt has this, along with some other medical conditions. The symptoms I have are constant headaches, neckaches, constant fatigue, migraines, and some other subtle things that I didn't think meant anything until today and I put all the puzzle pieces together. 
THe scary part is, is that this doesn't go away. I will either end up having surgery on my brain/head, or some kind of treatments that may or may not work. And I will still have to deal w/ the symtoms. This whole thing just completely knocked the wind right out of me. 
Today, I do not feel optimistic or happy that it's not something else or blah blah blah. I'm scared, upset, mad, overwhelmed and tired of being sick. It sucks. this whole damn thing sucks. 
I already have my hands full dealing w/ 2 kids that need medical attention. Now I have to deal with this. We need a 2nd car, a washing machine, a bike for Isaiah... I'm rambling and possibly having quite the pity party. but i think i'm entitled. 
So...I'm pissed off, exhausted, overwhelmed and have to pull it together by tomorrow afternoon to bring Haley to Children's hospital for her test to find out if she needs surgery. 

Thursday, April 7, 2011

Isaiah's IEP

We had Isaiah's IEP yesterday. It went great. His teacher and his special Ed teacher and awesome. He's working so hard and making a lot of progress. I feel like all the hard work I did to get someone to listen to me is finally paying off. He can go to school and learn and feel like a regular kid. He has his challenges, and we will deal with them. But for right now, he's doing well. I can't ask for more than that!!! He's been on a high since Saturday. Super happy,'s weird. I guess it's better than the alternative. 
Tuesday Haley sprained her right ankle. So we made a trip to the ER. Thankfully it wasn't a bad sprain. She stayed home yesterday. Today she went to school. She has an ace wrap on it and an air cast and is using crutches. But I think probably by tomorrow or Saturday she won't need the crutches.  She has the urodynamics test at Children's on Tuesday. I'm not sure what we will find out then. I guess will see then. 
So, I am ready for this freaking weather to warm up. It's April, I'm tired of the cloudy cruddy days. I SWEAR I would move to Florida given the right opportunity. And make no mistake, I have thought long and hard about this, I have done my research online.. the whole shabang! I'm sick of WI!!!!  
So...I am babysitting the Powell girls today. they are so much fun. They are funny and loving. My kids love having them over. so.. that's all for today!!!

Saturday, April 2, 2011

Thinking TOOOO much

I think too much. I think about the past, the present, the future. I guess that's normal right? I think of all the things I could be and compare that to who I am...2 completely different people.  Not necessarily a bad thing.  I just feel stuck. I am limited by responibilities that go along w/ having a child that is autistic. I am not upset or resentful of that. Those are just the facts. So some days/evenings I am not able to just go and let Jeremiah babysit b/c if Isaiah isn't having a good night, I can't leave. Isaiah is NOT afraid of anyone, at least in our family. So if I leave J to babysit and Isaiah has an episode, that leaves J in the line of fire. So, that means I can't leave. I am ok with that. Every now and then I get frustrated. Really and truly, just frustrated.  Our life and routine has to be or is very routine oriented. Or at least that's what we shoot for. I hope I'm not complaining. It was kind of a rough week w/ Isaiah. But then today, Isaiah apologized to me and gave me a huge hug and I didn't even ask for it. That alone made my WEEK!! AND he told me he loved me w/o me saying it first. Those are the moments that I cherish. Seeing him laugh and giggle and have fun w/ his siblings make all the hard work worth it. 
Some people say to me, oh God must think you are so special to have given you a special needs child.  Well, let me tell you, I do not feel special. But I do feel like I wouldn't be me w/o Isaiah as my son.  
I guess tonight I am just feeling meloncholy and like I just need a change of scenery. Everything is the same, nothing is too exciting. Oh yeah, that's life in your 30's w/ kids, haha. But then again, I see other families w/ all kinds of crazy going on, so i guess I'll take my same 'ol same 'ol and be thankful for that!