I see you...the way you share yourself...your time, compliments, love, encouragement...I know it's there. I see you give it to others... I just don't understand why the choice to share it with me isn't an option? I haunts me...torments me...as to why I am not good enough. It's a matter of choice for you. I told you what I want...need...desire...yet that is not an option in your world. So what's in your garden?...what's in mine...

I need to get better about my writing. It's not that I forget about this blog, it's just kind of a personal space for me to get my thoughts and feelings out.

Tonight I am sad. Sad that our Moyamoya community lost another friend and "Moyamoya Mate". It makes me think about the friend that I lost to Moyamoya just 5 months ago. I miss her. Her family misses her so terribly. I remember her daily. I see her kids every day at school (I started a part time job at my children's elementary school) and I smile. I talk to them, tie their shoes and zip up their jackets and smile to myself knowing that she is saying "Thank you for looking out for my babies" from Heaven.

News like this also makes me anxious and nervous. Why did she die? Did we have the same surgeon? What is her history? CAN THIS HAPPEN TO ME? It really scares me to think that I could just not be here; for my kids and my husband. How terrible that would be for them. As a mom, you are the entire world to your kids...I don't even want to go there. It just scares me.

Rest in peace T. I'm so sorry that you lost your Moyamoya battle.

Have you ever been in a situation where you get an inkling you are the “expendable friend,” you know the person someone might want to socialize with at a certain time and place, but who will later be virtually forgotten.  Yes, I have been the expendable friend on many an occasion, but I have learned to deal with it.  I have even paid for my friends when we went places, or went out of my way to make them feel better when they were down, but I learned along the way I was truly expendable by a few people.  For instance, other friends were invited to major life events, but I was not even invited.  In retrospect this might have hurt my feelings, but when I thought about it, I just figured out I was not really all that important to this so-called friend.  No wonder I've become more of an introvert!

For years I have always been the person that went out of my way to help others.  I do not want to stop being who I am just because a few people have found me to be expendable.  Actually, I have received glowing compliments from strangers.  One man told me I was more helpful than most people, and I had to wonder about what he meant by that. When I thought about it, I realized I actually go out of my way to help others and to be friendly, and some people cannot be bothered.

I am not trying to criticize anyone, but we do live in a modern culture that places a high premium on self-indulgence and self-involvement.  In the past I used to listen to people who only talked or thought about themselves, but as of late I just cannot be bothered.  I might be glad so and so is ecstatic about this or that, but after awhile, it gets boring to hear someone prattle on about himself constantly. 

No one person is that exciting, and if a few people consider me the “expendable friend,”  I always bounce back and move on.  I realize I do not have the dazzling personality that is winning over crowds, so I prefer to have a few friends in my life who count and care.

Still feeling tired and sluggish. I'm sure this rain storm isn't helping. I did get on the elliptical for 10 minutes...taking it easy. Having a TIA always scares me. I spent most of the day on the couch with my sick daughter. I'm sure that didn't help the tired and groggy feeling.  :)

I know I have to take care of myself, and the rest felt good, but I feel like I get labelled lazy when I do that. I didn't do much around the house today and my husband didn't come out and say anything, but I could tell the "What the heck did you do today" was there. No one understands what looking normal and suffering in silence feels like. OK, that was a little dramatic, but you know what I mean. Just because you look fine doesn't mean someone is.

So we went camping for 4 days over the 4th of July, and had a lot of fun! the first night was gorgeous, followed by a day that was so windy we couldn't do anything but sit and yell to hear each other. The next days were so nice. We went boating, tubing and swimming. It was a lot of fun!

While packing to go home, I reached up into a cupboard to get a cup for my son and my left side just went gone. "Gone" is the best way to explain it. All of the sudden, I had no feeling on my left side at all, like it all just fell off. I felt like I could fall to the floor but made it to the couch, in the motor home, and sat down. I told my son to go get my husband. I was eating something, and chewing, but my mouth felt a little weird as well. By the time my husband came in it was gone. It only lasted about 20 seconds, but felt much longer. I wasn't sure if it was going to stop, or continue and get worse. Luckily, it was just that short, and resolved quickly. My husband made me do all the stroke tests...smile, stick out your tongue, hold your arms out, etc...and I passed them all. I had no pain, no headache, and nothing afterwards. We think it was a TIA.

I think maybe I didn't keep myself hydrated enough. We were out in the sun a lot, and I think maybe I didn't drink enough water or Gatorade. I need to make sure to get enough fluids while we're out in the sun!

It's been a rough Summer, I'm not even going to lie. Luckily, I've had one really good friend who has been there and has helped me out. God knows what I would do without her. She's a true blessing!

It's been a weird Summer. People that I was friends with are now suddenly gone. Just gone, or too busy for me, or I've pissed them off (somehow...not really sure). I always try to be honest with people and with situations. I guess some people can't handle the truth (not that I've been rude). Most of these people I have helped out with gifts of clothing, or helped around their house when spouses were down, or helped with household chores when they were too busy, all for free, out of the kindness of my own heart. And the best...a friend request on facebook declined. Whatever! It just seems like I am the first one people call when they need something, but when I am having a rough time, where are they? Not one call, not one "hey, how are you doing?" or "How are the kids?" Not one play date, or invite to lunch or anything.

Life with a defiant child is hard too. Every day is a battle, every request a chore. I don't know if the therapist is helping or not. $135 for 53 minutes of playing games and talking. No coping skills. It's frustrating.

We were also going to move to another town. We were thisclose to listing our house. Had they accepted our offer (full asking price contingent on selling our house) we would have. That, in itself, has been an emotional roller coaster. Of course, only one friend knew, only one friend cares. (Not a pity party, it's how this summer has felt).

I'm not trying to make this a depressing post. It's just so amazing how quickly I have been forgotten by people I have gone WAY out of my way to be there for. How quickly a person can become non existent, and how there can be no one who knows or even cares. Except my one blessing of a friend who doesn't judge, is there for me no matter what. Thank God!

My blog, my feelings...judge if you want.

I saw this on Facebook today and realized how true it is...

Don’t ever be ashamed of the scars life has left you with. A scar means the hurt is over and the wound is closed. It means you conquered the pain, learned a lesson, grew stronger, and moved forward. A scar is the tattoo of a triumph to be proud of. Don’t allow your scars to hold you hostage. Don’t allow them to make you live your life in fear. You can’t make the scars in your life disappear, but you can change the way you see them. You can start seeing your scars as a sign of strength and not pain.

Rumi once said, “The wound is the place where the Light enters you.” Nothing could be closer to the truth. Out of suffering have emerged the strongest souls; the most powerful characters in this great world are seared with scars. See your scars as a sign of “YES! I MADE IT! I survived and I have my scars to prove it! And now I have a chance to grow even stronger.”

This song reminds me of me since my Moyamoya journey...it's Unwell by Matchbox 20. Take a listen if you can.

It's hard to describe but there is definitely a "me" that fits into what I call the BMM (before Moyamoya) category and AMM (yes, after). I see pictures of myself or my family or of anything really and my brain automatically categorizes it as before or after my diagnosis and surgeries. I was definitely a happier, more confident person before. I can see it in myself every day, and I can see it in pictures and videos.

Something changed in my core, my "who I am" with that diagnosis and treatment. I lost ALL confidence in myself. I think because something I trusted so much (myself and my body) failed me, it shook me to my core. I am now anxious about even the simplest things. I take an antidepressant that helps with that as well as low serotonin production. I used to sing at weddings, sing karaoke and now I quit choir at church because of low self esteem issues that hold me back. I suffer from being inadequate, or feeling that I am inadequate, for almost everything I do. And weight loss...don't even get me started on how much weight I've gained since "BMM". Uggg, that is a struggle that I see in the mirror every day that exacerbates all my other feelings. Maybe I need to find a stroke survivors support group, or near death support group or something like that, because I think others would understand what I am going through. It's almost like some kind of PTSD, maybe a support group for that as well. I have so many things to be happy for (I know that's not correct grammer) but yet I am not a happy person, and I'm not sure why.

I know I'm not crazy, just a little unwell...

I am not a fan of thunder and especially lightning. I have always been a weather wuss! I mean, if there is a lot of thunder we'll be in the basement. Right now we're having some loud, long thunder...Uggg! I am debating unplugging everything. Ever since our house was hit by lightning 9 months ago, I am even more afraid of storms. It was such a pain to replace all that was damaged!

Anyway, yesterday was day 1 without sugar. I did pretty well. I forgot for a split second and had a few pieces of my son's dry Cinnamon Toast Crunch cereal, mindlessly popped it into my mouth and then thought "what the heck am I doing?" I didn't even realize I was doing it either. Today is my first full day of low carbs (50 or less per day). I am so desperate to get this weight off, so exercise and fewer carbs for me now.

Mother's Day is coming up this weekend and I didn't even realize it. My husband asked what I wanted to do and I have no answer. I really can't think of anything that doesn't involve food. But a good buffet should have enough low carb options to make it worth it.

Happy Mother's Day to all the Moms out there and especially to all you other "Moyamoya Mommies"!

Happy 2nd Annual World Moyamoya Day!

Today was an emotionally exhausting day. So many suffering from Moyamoya, physical and emotional symptoms, as well as those suffering from the loss of family and friends. I spent the day with many tears; happy and sad. I am so proud of so many who spread awareness and advocate for us!

I posted a lot of stuff on Facebook today. Everything I found actually. I may have gone overboard a little bit, but it would be worth it if one person learned something, or hopefully it could save a life!

We all wore our World Moyamoya Day t-shirts today. I had to bribe my son with ice cream to get him to wear it, but he did. He doesn't like the brain on it. It freaks him out. He's 7 years old, but I know he remembers our trip to San Francisco for my surgeries. I think the memory freaks him out more, and he projects it onto the shirt.

I had my 3 year check up this past summer and had all restrictions removed. My brain looks normal! (Hey, no jokes about if it ever was really "normal") I was also very excited to attend the Stanford Moyamoya patient picnic. It was so awesome to meet so many other patients in person, not just online.

Anyway, I need to get back to blogging because I miss this outlet. There is something very theraputic about writing things out and letting them go into cyber-space.

Good night, peace and happy World Moyamoya Day!

It looks like it's been a while since I've posted.

We took our 6 1/2 year old son to see a Mental Health Specialist. He has been officially diagnosed with Separation Anxiety Disorder. I know his anxiety and panic attacks are a reality, but some how hearing the actual diagnosis is affecting me. I feel sad. I'm a stay at home mom and I feel like I have somehow failed him. This is my job, my desire, my life's dream, and I love my children more than anything in this world. I can't stop feeling like I've done something wrong.

We've raised both kids in the same house, in the same town. I've done the same early childhood classes with both. They've both had the same upbringing. I know every child is different, but Emily and Aiden are so different. Emily is a social flower, a dare devil. She loves roller coasters and can have a new friend within minutes of being somewhere new. Aiden suffers from extreme anxiety and panic attacks, to the point of affecting his life and ours. He then cries because he can't do things that his friends are doing. He understands why we are seeing his new doctor. He even said he wants to keep seeing her so that she can help him. At 6 1/2 he wants help and has asked for it. It breaks my heart to see him so upset and frustrated and angry with others and himself.

I have guilt and feel like I did something wrong. Did I do too much warning about stranger danger? Did I scare them too much by telling them how to fight and scream if someone tried to grab them or kidnap them? I know the realities of the real world. I was chased by two men in a brown van with a gun while walking home from school one day. I squeezed through a hole in a fence and ran into a liquor store. My worst fear is that someone would take my child and hurt them.

I know I do too much for my children and "over parent". I know they need more responsibility and need to do more things on their own. I just do things myself because it's easier than the fight and battle. I always cave when they refuse to do something and there are no consequences to them for not helping me.

I also wonder too if my Moyamoya caused this in him. He was 3 when I had my strokes and spent so much time in ICU and then had my 2 brain surgeries. He came to California with our family while I was in the hospital for my surgeries. Bruce was with him some of the time, but the majority of that 2 1/2 weeks he was with my sister-in-law, and was away from me. He saw me a few times through the hospital window, while hooked up to everything. Did I scare him? Is he afraid to leave me for fear that I won't return, or worse yet, die?

I just don't know, but I wish I could take away all of his pain, anger and frustration. It just breaks my heart.

So, it's 3:00am and I am up. I can't sleep. I suppose the nerves and anxiety of going back to Stanford for my 3 year check up is kicking in. I feel fine, and I'm confident all my testing will be fine, but there's a small part of me that says "Ya, but...what if...". It's a scary place to be. With Moyamoya the reality of suffering, dying and death is so real...I see it every day. I pray a lot, and try very hard to send all my worries and concerns up to Him. He is my rock...

Going back to bed an hour later now to see if I can get anymore sleep. Flying is hard enough on a Moyamoya brain, I don't want to be sleep deprived as well. Good night!

Monday was a very emotional day. As World Moyamoya Day, many people, from all over the world, posted their stories and pictures to our Facebook page. Many success stories, many promoting Moyamoya awareness, but so many losses too...young children, mothers, and other family members and friends. It doesn't have to be this way! Getting the correct diagnosis and treatment is so important, that's why I will continue to spread awareness and post relevant stories as I can. You might get sick of hearing it, but stroke awareness and knowledge of Moyamoya might one day help save a life!

This was a post I made on Facebook on the day following World Moyamoya Day, and one of my responses was that they were "glad my surgery was a success and I have no more problems". It's a seemingly harmless comment, to the uneducated, but to us who know Moyamoya, it's far from true.

I am very blessed that I found Dr. Steinberg and Stanford Medical Center, the leaders in Moyamoya disease. I am so thankful that I had bilateral STA-MCA surgery, but I am far from problem free. I'm afraid this post may turn into more of a rant, so bear with me...

I still have physical and psychological problems. I had 3 strokes and 2 life saving brain surgeries. They removed 2 golf ball sized chunks of my skull! 

• My left eye blinks slower than my right.
• My left hand has lost fine motor skills and strength
• I have 2 pretty gruesome scars
• I get headaches
• My head aches in cold weather due to screws and scar tissue
• My head, in my surgery areas, feels and sounds hollow to me when I touch it.
• I have a terrible memory
• I sometimes say the wrong word when I talk. It starts with the same letter of the alphabet, but is WAY off
• If I get up from a seated position too quickly I get dizzy. Like - hold on to something, close my eyes and breath through it for about 20 seconds - dizzy.

Nights when I go to bed with a headache, I am afraid to go to sleep. I am afraid I will have another stroke, since that's what started my Moyamoya journey...waking up, with left side weakness, from having a stroke in my sleep. My anxiety is high, and I have my husband check on me through the night to make sure I am alright. I am also afraid I won't wake up at all, I fear for myself and my family. How terrible would that be for them! I live with and think about these things all the time.

There is not a day that goes by that I do not have some reminder that I have Moyamoya. When I'm sick I have to worry about what medications I can take. On a sunny, bright day I can't wear sunglasses. I can't wear any glasses...they could cut off my blood flow to my brain, as they used the superficial temperal artery to do the bypass surgeries. The headaches and dizziness...at least one happens daily.

I just found out on Monday about a woman who had both STC-MCA surgeries and was doing very well, for 7 years. Earlier this year she had a stroke, was recovering and had another one, and she passed away. This really scares me! I am now terrified that, despite having these surgeries, something could still happen. I could still have another stroke! Thank goodness I go to Stanford next month for my 3 year check up, because I have some very real fears and concerns.

I am usually a pretty positive person, don't get me wrong. I am very blessed, but I am FAR from problem free.

I go back to San Francisco in June. My mom is going to go with me, for kind of a Girl's Trip, with some medical junk thrown in. I have the flights made, the rental car and the hotel reservation made. Looks like we're all ready to go!

I am also excited that we get to go to the annual Stanford Moyamoya picnic as well. I've been wanting to go for so long, and am so happy that I could work in my check up around that weekend!

My weight loss so far...

I am proud to say that I am currently down 23 pounds, and have about 37 to go. I am on my way... :)

When I got sick, and had 3 strokes and was told I would die without these 2 life saving brain surgeries it shook me to my core. It was the most scared I have ever been in my life, not only for me but for my family as well, my kids were 2 (almost 3) and 4. I lost a lot of myself during that time. I lost control of my life, had to depend on others, and lost confidence in myself and my abilities. I mean, if my body failed me, to the point of almost dying, what am I worth? I really lost a lot of self worth and esteem and spent a lot of time being afraid to even try doing anything. I reverted inward, and put up a lot of walls to protect myself. I'm slowly starting to gain myself again, starting to come out of my shell, bringing down my walls...feeling very vulnerable and out of my comfort zone, but I know the only way to grow is to step out of those comfort zones, and I really feel good and ready to do this for myself!

I can't believe my baby girl will be 8 years old on Sunday! Wow...where does the time go?

We were supper blessed to have her, after 11 years, 3 months and 22 days, many infertility procedures, including IVF, and many, many heart-breaking days...she was worth it all though!!! 

What an amazing tattoo! I just had to share... (it's not mine, but another Moyamoya Survivor's)

There are so many out there trying to promote awareness for this extremely rare disease. There is so much unknown, there are even some doctors who have never heard of it. We need to make sure we get the word out, and educate all who will listen!

I just spent 3 days with a sick child. My daughter had the flu...not fun! She had a fever of 102*, and was throwing up. I feel so helpless when my children are sick; I want to take away their pain and make them better, but all I can do it make them as comfortable as possible and tend to their every demand. Thankfully she is better today, and back in school. I'm a little nervous because my stomach has been feeling volatile since last night. I sure hope I don't get it now. Or worse...her younger brother!

Speaking of younger brother, he woke up this morning wet. Poor guy had a dream he was going to the bathroom and actually went in his sleep. He's six years old, I know it was an accident, but now it's one more thing I have to clean. On top of puked on blankets and towel, now I get to figure out how to clean a mattress. (I had a cover on it for years and took it off because he was old enough a few months back. Oh well...) He felt bad enough, didn't want to add any stress, shame or guilt to him. I know how he feels, even as an adult this has almost happened to me.

So, today I will be washing tons of towels and bedding. I'm so tired and warn out too, taking care of sick kids has worn me out, I think. I need to get back to exercising, that always makes me feel better. But, I hurt my knee and am limited to what I can do now because of it. At least I can still do Jilliam Michaels' circuit weight training. Just not the Jumping Jacks!

Beautiful sentiments, that are sometime hard to put into words. This was written by Reagan Wilson, Moyamoya survivor. I think it says it all...

Today is my 5 year Anniversary since surgery at Stanford. I thought I would share something with you that I wrote for this day! Just a little something about some things I've felt as I have walked through this Moyamoya journey!

----------------Refined-----------------
Refined by something that left untouched,
Would have resulted in the end of tomorrows.
Stumbling upon a path that created
A possibility for life to go on.
Life that we often measure by our wants
Or what we can obtain.
Life in its beauty is immeasurable
Not defined by the so called “treasures” we covet.
Strangers taking a moment of time to make a difference
And giving a chance for a lifetime of tomorrows.
A chance to watch children grow.
To be an inspiring person from the strength
Gained from the refinement.
Refining is not an easy road and often a path not taken.
It is met with tears, fears and frustrations.
A roller coaster of emotions
Battling to overcome the struggles that come with what has been handed.
Wanting many times to give up
But knowing there are those waiting for you to be strong.
No choice but to fall on your knees
And cry out for intervention.
To fight back with all you have
And learn….
That when life knocks you down
You best get up with a smile on your face
And laughter filling the air.
To give of yourself freely
And tomorrow when you wake up,
Give of yourself some more…
For once your tomorrows were numbered
And now they are cherished moments where the meaning of life is found.