December 9, 2009: Two years ago for my second surgery for Moyamoya.

I'm not going to say much about this. This is what surgery number 2 looked like. Quite different than number 1, but the same. I'm not going to lie...this is a very emotional time of year for me, starting with Halloween through December 16th (the day our family returned home from San Francisco, to our second chance at life). For me, part of moving on is remembering...part of healing is to grieve for that time and for others going through the same thing..it helps me move forward. Many people say "You're good now, let it go." I never can and I never will. 

Happy 5th birthday to my handsome boy!!!

Today my baby is 5 years old...where did the time go? It seems like they grow up way too fast! 

He and I went to breakfast this morning and he had waffles with blueberries and whipped cream, with bacon. He thought that was pretty special. I even took him to school late and he get's to spend it with one of his best buds! We'll have a birthday dinner tonight with the family and then his big friend party is this Saturday. Should be a blast!!!!

Emotional time of year for me.

December 2nd is the 2nd anniversary of my first Moyamoya surgery. I wish I could convey to others what it means to me, how it feels, not so much physically, but emotionally and spiritually. Being told that you have a rare illness that will, eventually, kill you if you don't have two brain surgeries is life changing. It changes almost every aspect of your life. Some people don't understand and all I can say is "how could you", there's no way unless you've been in that situation. I don't mean that like walk in my shoes, no, not like that, but that you honestly can't.

I see pictures, hear songs, see movies...things that I remember and they automatically fall into "before Moyamoya" and "after Moyamoya". I don't try to categorize them that way, it just happens. I can't help it. It really is my first thought.

But, with every anniversary I realize that I have been given a second chance. Not many people get a second chance in life. I am very thankful that I was diagnosed and treated quickly. I am thankful that I have very few problems left over from the strokes and surgeries. I am thankful that I was able to put my life into God's hands and actually feel His peaceful embrace. I am thankful that I am still here with my family, and thankful for my family. While I am not thankful that I have Moyamoya and all that I have gone through, I am thankful that I can support others who are going through Moyamoya as well. I am thankful that my experience can and has helped others. I'm just so blessed and so thankful.

So tomorrow, when my second anniversary is here, this is what I will be thinking about...not about all the bad, scary stuff that happened, but how well I am now, physically, and all the things I am thankful for.

Happy 40th birthday to my husband! Finally, he's as old as I am! :)

I just had to share this. I just received it in my inbox. What timing... (from Proverbs 31 Ministries, daily devotion)

November 15, 2011 Labels Lisa Whittle, She Seeks

“I have called you by name; you are mine.” Isaiah 43:1b (NLT)

I ran down the stairs to find the usual smattering of bright red, green and silver wrapped boxes full of gifts. I tore into them, anticipating the many things I’d written on my long Christmas wish list. All the gifts excited me. But one, in particular, was a favorite: my very own shiny black label maker.

In the weeks to come, I would put labels on everything. My shoes had white sticky strips with gray crooked letters that spelled ‘Lisa’ on them. So did my books, my bags, my plastic baton handle and even my padded bicycle seat. I took great pleasure in tagging the things I loved with my name.

But as the years went on, I used labels in different ways. I labeled myself as confident when deep down, I was really afraid. I labeled myself as bad when I became weighted down by my sin. Even as an adult, when my husband and I closed the church we started just 13 months earlier, I labeled myself a failure.

Labels. Not all of them are good.

Often, the labels we put on ourselves as grown women can create holes inside us — the kind of internal voids that only God can fill. We do this when we pluck one negative experience from our life, or even, a positive one, and we decide that our life story, worth and future rests on the label our experience has created. It is then that we fail to remember that the only label we need ever wear is the one that says we belong to Jesus.

Jesus did not create us to wear the labels of this world, even the ones we place on ourselves. Instead, He created us as His “dearly loved children” (Eph. 5:1 NIV).

Labels get in the way of this. They keep us tagged with unhealthy stigmas, emotions and pieces from our past that weigh on us and stifle His intention for our life.

The truth is, our experiences do not own us unless we give them permission. Instead, we have access to the power of God to help us peel off the labels, so we may start living a whole new story — our own story of wholeness.

Are you ready to live without your labels? If you are, then you are in the right place.

Because today, Jesus wants you to know that His label of love has covered all the rest. And with that covering, no other label has room to stick.

Dear Lord, thank You for being the only label I need wear. Help me to take off the other labels I have been given, even by myself. May I know, today, that identity in You offers freedom...and may I receive it into the deepest places of my heart by the power of Your Holy Spirit. In Jesus’ Name, Amen.

Anyone who knows me, I mean really knows me, knows how much I have changed from the Moyamoya diagnosis and all that crazy time in my life entailed. I am no where near to being the same person I was. It really hit me like a ton of bricks, the shock of a life time, and it left me feeling like a shell of my former self. My self confidence, esteem and worth have really declined; almost lost. I've been working on it, praying a lot, but it's still really hard.

Yesterday something happened that really set me back again. I went to a salon (that I used to go to, and they know me there) to get my brows waxed. The stylist didn't even recognize me and when she did she was shocked! She said "Oh my God, I didn't even recognize you! What happened? Oh my God, your hair...come here and let me fix this. This is a mess...it's horrible! Somebody just butchered you!" and on and on and on. There were other people in the salon who heard it all as well. I was so embarrassed!

People know I hate my short hair and I regret so much cutting it short to even it out with where they shaved my head for my surgeries. I hate it, and regret it so much...and am trying to grow it out again. Well, the stylist didn't cut much, but set me back at least a couple of months growth. Yes, maybe it looks better, or lays better now, but so. Vanity has never been something I cared about. I have very sensitive skin so I rarely wear make up. When I do, my skin turns red, itches and breaks out. (and yes, I've tried many brands).

The hair may look better now, but I don't see much change...in it or the way I feel about myself.

When it rains, it pours!

We had to take my 6 year old daughter to the ER. She woke up crying in the middle of the night and couldn't move, her neck was so sore and stiff. We called our doctor and he said to take her to the ER because he could see her, but a meningitis test would have to be done there anyway. Long story short...she didn't have meningitis, thank God! She did however test positive for strep throat. Her lymph nodes and muscles where very sore from the strep. She is now on antibiotics and isn't contagious any more, as of right now (24 hours later).

My son, who just had 2 tonsil surgeries, spiked a fever and I was afraid he had strep as well. I took him to our local Urgent Care to be tested, last night. He came back negative. I was surprised! I thought for sure that was why he had a temperature of 100.4*. He woke up at 10:10pm crying, inconsolably. We had to calm him down to give his some medicine. This is so frustrating! It seems as if he is getting worse again! Can he possibly have yet another blood clot? Wouldn't the Urgent Care doctor see it? Did they do the strep test right? Is he really positive? After many bad experiences with this hospital, I just don't trust them any more. All I know that if we have another night of screaming and crying, I am calling the doctor that did his surgery and ask what is going on???!!!

So, they are both home from school today. My daughter can go back tomorrow, and my son, hopefully his preschool class on Friday. We'll see how it goes.

My nephew is also home from school today. He says his stomach doesn't feel well. I really wasn't surprised by his announcement this morning. My other two were staying home and he has some hypochondria issues. I fully expected him to be sick today. I even discussed it with my mom and husband yesterday.

Speaking of my nephew, he's having a really hard time. He really seams to hate living with us, even though we are doing all we can do to make him feel welcome. We have gone way out of our way to let him visit "home" when he can, driving 3 hours, to and from, taking and picking him up every time. My mom also has to rearrange her schedule to accommodate him, which she does, but it doesn't help. He just mopes around all of the time, or sits in his room. It's really frustrating! I know this is hard on him, but he could try. I mean, just a little bit. I never hear "please" or "thank you" for taking him either, just "When are we leaving?". He cries when I pick him up from my mom, it's just so hard. I picked him up last Sunday and all he said was "I can't wait for Thanksgiving" - meaning, when he can be with them again. No thank you for going way out of your way to make me happy...nothing. It's very frustrating. I don't know what else I can do to perk him up, get him out of his depression...and yes, he sees two councilors at school, their procedure for kids in this situation, so I hope it will help. I just feel so helpless on this front...

Another loss at our house.

Sometime during the stress and panic of my son having his second surgery, we lost our two pet frogs. I am deeply saddened by their passing. I feel horrible and so guilty. I take such good care of all my pets, and I truly love them all. To find them without water, and both dead hit me very hard. I just dropped and cried like I haven't cried for a long time in my husband's embrace. I think the culmination of what we've been through this past week with my son and my frogs death was more than I could handle. I know I will miss them terribly, I really enjoyed caring for them and watching them, as well as their chirping. I found it very relaxing. It's too soon to make any decision as to whether or not we will replace them.

Rest in Peace, Mario and Luigi!

We had to rush my son to the Emergency Room on Friday night.

He starting spewing blood like one of those horror movies, it's the only way I can describe it. There was so much blood, and we were so scared!

We were getting the kids ready for bed. He was in his PJ's, in his bed, and just laid back on his pillow when he made this choking, gagging noise, and out poured blood from his mouth. I freaked out! We had just given him his medicine, which is red, so when I yelled to my husband that he was spitting up blood, he said it was just the medicine. He wasn't there and I yelled to him that it was blood. He came in our son's room and grabbed him and ran to the bathroom. He was crying and spitting so much blood into the toilet. I yelled to my daughter to get shoes and socks on, and a jacket and get in the car. We then drove to the local ER.

By the time we got there the bleeding had stopped. The ER staff checked him out and wanted us to stay around for an hour or so for observations. About the time that they were considering letting us go home, he starting spewing blood again, but this time worse. They put an IV in him and called for an ambulance. They were sending him to Children's hospital in downtown Minneapolis. My husband went with and I drove myself there, after a quick stop at home to let the dog out of his kennel to poyty and grabbed my phone charger. Five minutes later I was off to the other hospital, where a surgeon was waiting to rush our son back into surgery.

A very good friend of mine was able to come to the hospital and pick up my daughter and keep her over night. Thank goodness for very good friends! She was able to keep her until about noon and then took her over to my in-laws house here in town.

When I got to the hospital there was so much construction I didn't know where to park. Finally, without even knowing where I was going I pulled into the correct parking ramp and parked the car. Luckily, since it was so late at night (it was just after midnight when I got there) there was parking right by the hospital entrance. I was a little scared...that downtown area is pretty bad, with crime and whatnot, so I was very relieved when I made it inside the hospital.

After two security checks I was directed to the ER where I just barely caught my husband and son as they were taking him into surgery. I got to see him off, give him kisses, and talk to the surgeon and anesthesiologist.  He was in surgery about half an hour when the surgeon came to talk to us. She said that everything went well. She removed a blood clot from his throat about the size of a golf ball and re-cauterized the seeping veins. He was in recovery and we'd be able to see him in about 45 minutes.

From recovery he was taken to a hospital room on the 6th floor. It was about 2:30 in the morning by this time and he was really tired and groggy, as were we. At about 3:30 my husband and I we able to lay down and get a little sleep on a tiny fold-out couch in his room. Various nurses came in about every half our to check on him and do vitals. He finally fell asleep and it was obvious that he was comfortable, so we laid down too.

When he woke up in the morning it was immediately clear how much better he was! He had his color back (he's been kind of a whitish/blueish/greenish color for days before) and he had the spark in his eyes back. He looked so much better! He was hungry and ate 2 Popsicles, juice and some chicken broth. He wanted to controller for the Xbox360 that was in his room and was sitting up, playing video games with Daddy. It was great! He was also getting up and walking to the bathroom.

He was discharged to go home at about noon. He is on a soft food only order for a few days but he was starving, so we went to KFC on the way home for some mac n cheese and mashed potatoes. He ate all the mac n cheese before we even got home.

That night he slept from 7:00pm to 5:00am. He calmly asked for medicine and a Popsicle, no more screaming and crying in pain, then he went back to sleep until 9:00am. We were shocked! We all slept until 9:00am! I guess we were all pretty tired.

He has been a totally different child ever since. He is sleeping through the night and doesn't even ask for pain medicine every few hours. We give it to him when he needs it, but he isn't in pain, crying for it.

Thank goodness! He still has to be home for a while, not really sure when he can go back to school, but we'll play that by ear...see how he's feeling.

I've never liked Halloween. I still don't.

I think the many years of infertility and wanting children so badly is the cause. Going to the door and seeing all the little tiny pumpkins, lions and bumble bees was tough. I wanted so much to be out with our children, not doing this for others. I know, selfish, but infertility sucks, and it changes people, women especially I think. Don't get me wrong, I enjoy taking our kids out, experiencing it through their eyes, but I still don't like it.

Another reason now that I do not like Halloween is because it will always be the anniversary of the stroke that started my Moyamoya journey. Two years ago tonight our world changed. I still remember it like yesterday, but I will not bore anyone with the details yet again. I am however, very thankful every Nov. 1st, to wake up feeling great!

The nights are horrible for my poor little guy! He wakes up screaming and crying, inconsolable, it's heart breaking. I keep thinking that it has to get better for him soon. The days aren't as good as they were now either, but not as bad as night time. The Tylenol isn't doing it any more, and at 4:00am this morning we had to force the prescription stuff down him. It tastes horrible, but it works! I then covered my bed with towels...just in case.

This HAS to improve soon! He is in so much pain and we are exhausted!

(I am documenting this experience so I remember correctly later. My memory isn't what it used to be)

My baby boy (OK, he's 4 1/2, almost 5, but still my baby!) had his tonsils and adenoids out, and tubes put in his ears yesterday, 10/27/11. Everything went well and we left the hospital at noon for home.

We were very nervous. The word "surgery" doesn't sit well in our house anymore. We didn't tell him about it, other than he had a doctors appointment and they were going to make his throat and nose better. I was afraid that he would think he was going through what I went through with my Moyamoya surgeries, so we just called it a "procedure".

Once we got home yesterday he seemed fine. He had 2 Popsicles, a juice box and 8 unbreaded chicken nuggets. At dinner he had some milk, mashed potatoes and a little bit of mushed up meatloaf. He did really well. We started the humidifier in his room a couple hours before bedtime and he went to bed as well as he usually does. It all seemed too good to be true. I felt like it was the calm before the storm...and I was right!

He woke up at 1:15am just screaming, crying, coughing...walking around his room. It took forever to get him calmed down. It took just over an hour to get him calmed down, medicated again, and moved to our bed. My 6 1/2 year old daughter woke up and was very worried about her brother. She wouldn't go back to sleep unless she was by him, so the three of us slept in my bed, and hubby moved to our son's bed.  My husband refilled and moved the humidifier to our room and the 3 of us tried to fall asleep. It was about 2:40 when they were both asleep.

I was sleeping at the foot of the bed, the wrong direction when I heard a rough voice say "I'm going to throw up!". It was 4:14am. I jumped up to run him to the bathroom but it was too late...red vomit all over my bed. I was going to run him to the bathroom, but let him finish on my bed. I can clean or buy new bedding a lot easier than I can get new carpet! My husband cleared the bedding while I was in the bathroom with our son. He finished spitting in the toilet while I ran him a warm bath. The nurse did tell us that the pain medication can make him nauseous and he may throw up. Nice, so let's make the medicine blood red so that parents panic for a split second when they see it!

I got him out of the tub, dressed and back to bed at 5-something am. I gave him plain Tylenol (right when I put him in the tub) and we fell asleep after just a few minutes. I made my daughter go back to her bed as she was not getting any sleep with us. She was up the entire time the rest of us were, worried about her brother. So, she got no rest and is home from school today to get caught up.

I was up at 6:30 to see my husband off to work and get my nephew up and ready for school. He got on the bus at 7:25 and I went back upstairs to check on both sleeping kids. Both were sound asleep so I crawled back into my bed with my son. He was up about 10 minutes later...so much for getting any sleep. I gave him more Tylenol and carried him downstairs to the couch. We made a comfy bed, turned on some cartoons, had some juice and then within a few minutes my daughter was up. I'd hoped she would have slept longer. Oh well.

Now again, my son seems fine, which is wonderful! He is sucking on a sucker (they said it helps him produce saliva, which is good), watching cartoons and coloring. I am washing bedding. I hope all that red coloring comes out. Luckily, it's white t-shirt material sheets. I can bleach it if need be.

My youngest child, my son, who will be 5 in December, has to have his tonsils and adenoids out, and tubes put in his ears.

I know it's a very common procedure, but I am very nervous and scared. I hate that he has to go through this, but we know it will make him so much better, and give him so much relief.

We are avoiding the word "surgery"...he is having this procedure done to make him better. Even though it has been almost 2 years now since my 2 brain surgeries for Moyamoya, he still knows and remembers what I went through, and what we all went through during that time. Even though we called it "head ouchies" he now knows that I had two surgeries and associates the word "surgery" with what I went through. We do not want him to ever think that he has to go through that. So, in 2 days, he will have a procedure done to make him breathe and feel better.

Please say a prayer for him if you can.

Dear God,

Please protect my son during this time. Please hold him tightly in your loving hands and return him safely to us. Please shine your love and peace on him the way you did for me during my Moyamoya surgeries and help him to heal quickly with minimal pain. In Jesus' name. Amen.

Prayers have been answered!!!!

My friend here in town, who also has Moyamoya, has been struggling with the financing she needs to make her trip to Stanford for her surgery. I have been wracking my brain trying to figure out how we can do this, short of going door-to-door asking for donations. I told my husband "I wish we could just write out a check to her to help out" and even talked about having one of the mommy groups I belong to try to help out if we could. I have been praying to God to please help out this family and...

I talked to her this morning and she is getting financial help, from a non profit Moyamoya foundation located in this region. HOW AMAZING IS THAT!!!!! It is the answer to many prayers, I am sure. YAY! I am so happy and excited for their family!!!!! :D

I sought the Lord, and he answered me;
he delivered me from all my fears.
Psalm 34:4

I am reading the book "Heaven is for Real" and all I can say is WOW!

I had to put the book down. I just finished reading the chapter where he tells his mom he has two sisters, telling her one died in her tummy. They didn't know the sex of the baby they had lost, and it was comforting to them to know that she was in heaven and doing well. She had felt the loss of a baby and grieved and felt guilty as well.

Not many know this but we have three angels in heaven. A few years before getting pregnant with Emily we went through IVF (invitro fertilization). Everything was perfect. My body did exactly what it was supposed to do, and everything looked really good. We had 3 beautiful embryos, I still have their pictures, that were to be our children. After a really bad transfer (of the embryos to my prepared uterus) they died. We believe they didn't have a chance as a lot of trauma was done to my uterus in the process of placing them. I saw the picture of all three inside of me and was hopeful, but it wasn't meant to be.

At the cemetery where Bruce's Dad is buried, they placed a heart sculpture very near his grave, with a mother and child inside the heart (It's hard to explain what it looks like) shortly after our failed IVF attempt. I released our three to heaven to be with Grandpa Larry, in his care, and placed flowers at both markers. This was my tribute to the ones we lost, even though physically there was nothing there. It brought me great peace to believe that they were in heaven with Grandpa.

This chapter in the book just hit home a little too hard. I hope that our three are in heaven together, playing nicely, waiting for the rest of us to join them. I can't wait to meet our three that were too beautiful for Earth.

Back to school time! :)

With the first week of school behind us, both older kids seem to be settling in well. My first grade daughter thinks school is awesome! My 6th grade nephew isn't quite to "awesome" yet, but every day is getting better. It's a new town, new school, new people, new friends...it has to be very hard, but he is handling it very well. He will be going on a 3 day class trip in a few weeks that should be really fun for him! I just hope he meets some nice friends that he can go out and play with. He's kind of shy (maybe lazy too) and hasn't made much effort in meeting people. I don't know if he knows it's just one year so why bother, or just no interest. I hope he meets at least one neighborhood friend.

My four year old starts Preschool this year. He's ready. I'm ready too! He's a headstrong boy, and at almost 5 years old, can be a pill most of the time. (Or a little turd, as I call him!). I am hoping that some discipline from someone other than myself and my husband will help him out. He pushes and pushes with us, which I know is his job to do at this age, but why does he have to be so darn good at his job???!!!

Sunday School and AWANA will be starting soon and I have all three kids signed up. I will also be helping with Sunday school preparation on Wednesday nights while they are at AWANA. I also signed up to help out in a classroom for Sunday school. Sounds busy, but it is all at a time that we'd be at the church anyway. Might as well volunteer my time to help out!

The end of summer is near. :( The forecast for today is 89* and then 65* degrees tomorrow, and then cooler, and cooler until it is, unfortunately, COLD! I will start the pool draining tonight and will have to get that packed up and put away for another season. Major bummer! We have so much fun in it! With the cold weather comes worries for me about my surgery scars and screws. The cold really affects it, and I get some pretty good headaches from it. I hate to wear a hat, but really have to here.

I wish I knew what was wrong with me.

I feel like crap. I am overwhelmed, and have no motivation. I spend most mornings until about 9:00 on the couch and spend the rest of the day waiting for the day to be over. My zest for life is gone...with it my self esteem and confidence.

Just looking for the perfect rock to crawl under...

I can so relate to this and I think this really explains what I went through with my strokes and Moyamoya surgery. This is exactly how I felt and exactly how I gave myself to God, giving me the peace and strength that washed over me. It's just amazing...

“My grace is sufficient for you, for my power is made perfect in weakness.” 2 Corinthians 12:9a (NIV)

It started out like any other evening at home. Donny made dinner while Annie attended aerobics class after work. It was a good arrangement. Donny got to practice his cooking skills and Annie got to exercise. Once Annie was home, dinner was served.

Unknowingly, their lives were about to change forever. In the middle of dinner, Annie’s right hand suddenly went numb. Unable to hold her fork, she dropped it to the floor.

“Are you okay?” Donny asked. Annie felt ill. Her head pounded like never before. Something was wrong.

The next day, Annie’s MRI exposed bad news: a brain aneurysm. The good news was it was operable. Alarmed by the dreadful findings, Annie fell to pieces as the doctor explained the procedure. He would start by shaving her head where the incision would be made. Then, the brain specialist would remove the left part of Annie’s skull.

Her heart would have to stop for a split second in order to put a metal clamp around the artery in her brain. This would definitely affect her speech for a while. The doctor couldn’t guarantee how things would turn out, but he was hopeful. Distressed, both Annie and Donny melted with grief.

After sharing the news with friends and family, Annie sank into a deep depression. The unknowns of her condition left her scared stiff. Her mind raced with possible outcomes. She didn’t get out of bed or bathe for days until she visited her pastor. Surely, he could offer her the peace to face her illness. But peace didn’t come during their conversation.

“I need something more,” Annie confessed to her pastor.

“He is what you need,” the pastor said, as he pointed to the large cross hanging at the front of the church. Annie walked slowly toward the cross, knelt down in front of it, and cried out to the Lord. She didn’t ask God to heal her. She didn’t even ask to live through it. “Just give me the strength to do Your will,” Annie pleaded.

At the moment Annie placed her life before God, she was filled with His peace and power. She had no more tears. Annie knew in that moment, no matter what — live or die — everything was going to be fine.

Annie’s surgery was a success. Though it took several months before she could speak again and nearly a year to heal fully, she had something better than a life without trials or sickness. She had the companionship of Christ and the assurance of His strength and enabling grace.

The world’s philosophy says, “What can’t be cured must be endured.” Our key verse says the opposite. What can’t be cured makes us dependent on the power of God. In that dependency, His power is given and we are made strong. I’ve come to learn this truth myself. God doesn’t always remove me from my painful circumstances, but He supports me in them. This strengthens me like none other.

Something amazing happens when we faithfully cry out to the Lord in our weakness and believe in His perfect care. We experience His super-natural power and peace. Our faith suddenly becomes stronger than our fear, and our trust becomes a strong witness to others. Go ahead and be weak when the crisis comes. His strength and grace are sufficient.

Dear Lord, thank You for Your strong grace when my circumstances look bleak. In my weakness, I cry out in utter dependence on You. Make Your power known to me. Be my hope, my peace and my strength. In Jesus’ Name, Amen."

I'm a little down today. Not sure why...PMS, dieting, stress...probably all.

I should feel good, today is a good day of volunteering. I've made a pan of bars and taken them to our church for a funeral today. I'm also delivering lunches today for Lunch Box Fever, an AMAZING program at our church that I am so excited to be part of. Hot, nutritious lunches are made and delivered daily all summer long to children in our community that qualify for free or reduced lunches at school. These are children that may not even have lunch when they are out of school. It is really amazing to be able to help out this program!

I'm feeling a little overwhelmed as well. I'm learning as I go on how to raise my 11 1/2 year old nephew. Thank God he's a good kid! It's my 4 1/2 year old son that is driving me out of my frickin mind! I love my son more than anything, but he is acting out so much now, being mouthy, aggressive towards his sister and just being an all around little turd! We don't know if he's competing for attention with another boy in the house, or if he's just being a normal 4 1/2 year old boy? I have no way to know how he "should be", never having a boy this age before.

Being stressed and overwhelmed makes me crabby, to everyone. I don't try to be, I just am. It is also depressing and I find that my confidence is gone and I am not happy with myself. I don't like this feeling. My self esteem is low right now with all this extra weight. I'm trying though...it's just so hard.

OK, end of pity party...

I would just like to know where I went so wrong...This was me when Aiden was 1 year old.

I was so happy, healthy and thin. I had energy through the roof and I could do anything! I just wish I could pin-point where it all went bad.

An insecure husband played some part. He didn't like "who I'd become", whatever that meant. I was confident and outgoing...he didn't like that. But now that he's lost about 40 pounds I support him and would never degrade him the way he did to me. That was the start of it.

I also had postpartum depression with Aiden. My doctor put me on antidepressants saying "you may gain a few pounds but you look like you could stand to". I was flabbergasted! I felt and looked really good so I was surprised he would say that. I also didn't know that antidepressants gave you belly fat, something I never really had, even after 2 kids. It's the worst kind of fat and the hardest to get rid of.

Then, a year and a half ago I had 3 strokes and was diagnosed with Moyamoya. I had two brain surgeries and was restricted to only walking and swimming. I stopped going to the gym and cancelled my persona training service. I am so afraid of pushing even to the end of my comfort zone, I cannot be pushed passed it by someone who doesn't know me or what I've been through.

I've signed up with the gym here in town again and would like to start slowly there.

I need to get back to the person in that picture. I don't like who I physically am now. It's just not me. :(

I'm a little frustrated right now...

It's bad enough that I have to have the little, daily reminders that I have Moyamoya. It's something that I have to deal with for the rest of my life. It's my problem and no one else's. No one else can possibly understand or know how I feel or deal with it, but you know what? I DO deal with it and I do very well, thank you! I don't mope around or limit myself or use it as an excuse. I'm not handicapped or disabled and I really, really, REALLY! hate it when people treat me like I am or in a way that I perceive that is how they're treating me.

I've overcome so much...damn it, let me be just a normal person. Don't limit me or not let me do something because you are uneducated, or scared of "what if". I'm just me, and if one of the world's best Neurologists/Neurosurgeons say I'm fine...that's good enough for me. It should be for others as well.

It's a boy! An 11 1/2 year old boy!

My nephew is now living with us. He will be with us for a year. His mother is in the Army and was "mobilized" (MOBED, as she calls it, I don't know Army lingo) to a place that isn't safe for families and children, on the Texas/Mexico boarder. He will be with us until the end of the school year next summer.

I lived with my Aunt for a year when I was five and did Kindergarten while living with them, so I know what it is like to be away from you Mom and family. It's not all fun and games, I really missed my mom during that time, as I'm sure my nephew does as well. I know how important it is to make him feel welcome and like he is part of our family. One of our spare bedrooms was the kids playroom. It is now my nephew's bedroom. I moved the playroom to our finished basement and completely renovated the room to be "his" room. I knew how important it is to have your own space, your own retreat, your own place within this family. It turned out awesome and he really likes it. He said it was the first time in many years that he had his own room. He quickly unpacked and made it his own with his pictures and posters. It looks awesome...like a child's room should!

I can see some major adjustments already. He and my 6 year old daughter like to ride scooters around our neighborhood. This is not something we have let her do before without one of us with her, but I have let go a little bit and allowed them to as long as they check in every few minutes. Unfortunately, my 4 1/2 year old son doesn't get to go with them. He doesn't understand that on the road he still needs adult supervision. I try to distract him with other things, but most of the time this ends in a fit of crying on his part. We've tried to explain to him (as best as you can to a 4 1/2 year old) that because of his age and maturity level, he can't do everything that the older kids do. Also, there are things that my nephew can do that my daughter can't do either. This is an adjustment that we're dealing with, with some pretty good success.

Yesterday I had to get after my nephew and daughter for disobeying my husband and I on where they can ride their scooters. We have a road, the "loop" that starts right by our house, loops around a section of homes and then pretty much ends right by our house as well. There is no other outside access to this road other than near our house. We allow them to ride the loop as long as they check in every time they pass our house. We also allow them to ride in a new, out-of-the-way area of a new part of a housing development near us. There is only one house there, and brand new smooth roads with almost no car traffic. Unfortunately, this area has river access. We told them that they could ride there as well, BUT DO NOT GO BEYOND THE PICNIC HOUSE TOWARDS THE RIVER!

I think you can see where this is going...

Yesterday my daughter asked me if they could ride the loop and I said they could as long as they checked in. I didn't consult my nephew, I just took my daughter's word that's what they were going to do. After 10 minutes...no check in. 15 minutes...no check in...almost 25 minutes and still no check in. I kept looking for them outside during this time and didn't see or hear them. I knew where they were...down by the river. My son and I got in the car and drove down there and sure enough...scooters and helmets sitting in the picnic house but no sign of them. I tried not to panic and stayed calm until I saw them both, about a block away down a trail along the river's edge. I was pissed! I yelled for them to come pack and them yelled AT them as soon as they were in ear shot. They knew we'd told them to never go past the picnic house by the river. It's a big, strong river, that is still flooded right now due to the wet Spring we've had. I told them both to get home. I made them ride while I drove so that I would have time to cool down and think about what I was going to do rather than react on my fear and angry emotions. I also called my husband at work to verify that he too did in fact tell them not to go down where they were. We talked and they are both now grounded from their scooters for the rest of the week and I explained to them why it is so dangerous and what could have happened.

It was the first time I had to discipline my nephew, but I knew I had to do something to set a precedence, that he had to listen to us and that there would be consequences if he didn't. After calmly talking it out, I think we now have that set.

All is good again now.

“Each one should use whatever gift he has received to serve others, faithfully administering God’s grace in its various forms.” 1 Peter 4:10 (NIV)

This is from my reading this morning. I start everyday off first thing with a daily devotion. This one today really resonates with me. Before Moyamoya this may have meant nothing to me, but now it couldn't be more appropriate.

I have heard some people who survive a serious illness call it a gift. I thought that was crazy! How could something that had the potential to kill you be a gift? I don't think the disease and the subsequent suffering from it is the gift. I think, as it has been for me, the gift is the wake up call for your life. I considered myself a Christian prior to Moyamoya, but I didn't give my life over to God, and let His will be my way. God wants us. He wants us to want Him, to love Him and to seek out His love and mercy. Sometimes, for some, it takes a real attention getter, like a serious life-altering experience. Moyamoya was that for me. Personally, my strength came from giving myself to God, putting my life literally in His hands and letting go. Strength came from reaffirming my belief that Jesus Christ is my one true Savior. I feel I was born again during that time of strife in my life. By giving myself to Him it allowed me to be strong for my family and accept that I needed help from others. I couldn't do it all by myself, I am not the super woman I thought I was. I was humbled by this enlightenment. I was also humbled my the amount of love I was shown by my friends, family and even strangers I had never met who were praying for me.

I feel that my gift is the knowledge of Moyamoya and I want to share it with whomever will listen. There HAS to be a reason that I was diagnosed and treated so quickly, when so many others suffer for many months or years. Some for a lifetime. I am trying to share my experience and knowledge with others, with the help and grace of God. I want to be there for others with Moyamoya, give them advice, an ear to bend or a shoulder to cry on. I feel this is my calling and my gift.

Wow! My worst "episode" ever!

Last night I was sitting at our kitchen table working on an email. I got up to check a date on my calender and it hit. My head tingled and I heard only a swishing sound in my ears, kind of like the sound you hear during an ultrasound. I was super dizzy and my body, from the neck down, both sides, went weak, numb and tingly. I kept thinking "ok, it's going to be done soon, just hang on and be strong...just breathe". But it only continued in intensity. It was like being in an earth quake and you keep thinking "It's has to stop soon" yet the ground continues to shake. That's exactly what I can equate this to. All I could do is carefully walk to the living room and lay down. I always remember the stroke doctor saying "Heart attach = sit them up, stroke = lay them down flat". This is to help equalize the blood pressure and get blood flowing to the brain more quickly. So I laid down. I must have laid on the floor for about 10 minutes before I could even think about getting up. Bruce and the kids were in the basement playing Super Mario Bros Wii and I wanted to yell down to them but they'd never hear me over the noise of the game, so I just laid there. I slowly sat myself up on the floor, and I was a little dizzy and disoriented, my vision was good, but I could see some grey or dark areas in my lower vision. After sitting a few more minutes I stood up. I was weak and my arms and shoulders felt slightly heavy, as did my head on my neck.

I finally asked Bruce to come upstairs and told him what happened. He did all the stroke tests and I was able to do them all, no problem. We don't know if it was a TIA or just a really bad head rush, but he is leaning towards the head rush. I laid down on the couch for a few minutes and watched a little TV downstairs. After about an hour I felt much better, almost normal.

I didn't sleep well last night at all. When something like this happens I always have fear that if I fall asleep something will happen and I won't wake up. All my Neurologists have told me not to be afraid of sleep as it's the best way for your body to repair and replenish itself. They also said if anything was going to happen it would whether I was awake or asleep. When I did fall asleep I had dreams about huge toads and salamanders being all over my house (we saw them at the zoo that day) and dreams of being in our motor home and I wake up thinking we are in the motor home until I finally realize I am at home. I always make extra checks on the kids when I am awake at night and say many extra prayers for us all.

This morning I am tired and I have a headache. I've actually had a headache since last Thursday, on and off. I'm guessing it's this cruddy, rainy weather we're having now affecting my sinuses and allergies. Hopefully the weather will improve soon. I don't like all this rain, but it sure beats snow!

The power of prayer!

Two weeks ago my family became official members of our church. It is a great church and all the people are so nice and friendly...it instantly felt like home!

We had a meeting prior to the Reaffirmation of Baptism on New Member Sunday. We discussed the church, what it means to be Lutheran, and a little about ourselves. After my turn our Pastor said "I don't know why I didn't make this connection before but it just clicked right now...WE PRAYED FOR YOU! You were on our prayer list/chain while you were going through all that."

How amazing! This church we just joined felt so comfortable and like home, even before I knew that they loved me and prayed for me, before even meeting me. What an amazing feeling that was!

"Where our strength ends is the exact point where His will begin."

At no time was this more obvious to me then when I had my brain surgeries for Moyamoya.

Many have asked me how I could have been so strong and brave, how I could not once, but twice, undergo my surgeries, without even batting an eyelash or showing any fear. I was scared, VERY, but I had given myself, and the outcome, to God. What's the saying?...Let go and let God. Amen. Absolutely! And I absolutely felt that I was in His hands, protected and safe in His loving arms. This is true peace.

If I was perceived by others to be strong or brave during this time, it was only because I was giving them a reflection of His love and strength. What an amazing gift! Thanks be to God!

Spring break and nowhere to go. I so wanted to go back to California...I miss it so much. Minnesota is better for the kids, that's why we came back, but not so much for me. I miss the weather, and my friends and family there. With scar tissue and screws in my head this cold weather really sucks!I am ready to move to somewhere else, warmer, but still with four seasons.

It's really nice having Emily home for Spring break! She and Aiden play well AND fight well. It's all good though.

I can't wait for it to actually BE Spring, weather-wise. So ready to get out and enjoy ourselves.