Sticks and stones...

I can not stand what PEOPLE have done with the English language. I can NOT stand the way words are taken, given a new meaning or a negative connotation and then used to hurt others. I simply can not stand it.

You know that old saying, we all know it, we have all said it at some point, I'm sure!! " Sticks and stones may break my bones, but words can never hurt me!" Usually said in a sing song voice, often by a child who then leaves the room to cry. What does God say about our words?

Proverbs 18:21 " Death and life are in the power of the tongue:"

Luke 6:45- " A good man out of the good treasure of his heart bringeth forth that which is good; and an evil man out of the evil treasure of his heart bringeth forth that which is evil: for of the abundance of the heart his mouth speaketh."

Our words do hurt people, even those who seemingly don't understand. Three weeks ago, Gracie was called a retard. She didn't even hear it, and even if she had, she doesn't know what the word means. I know though. I knew what that child was implying about my little girl. It's in these times that as a parent, we have to just take it in and make it our secret hurt. My flesh wanted to take that child aside and give a little lesson on what the word means. My flesh wanted to find the child's parents and ask them why in the world their child is saying such hateful words!! Thankfully, this was one time that I could not let that flesh win, so I just took it. I realized last night though, that those words were sitting right on top of my heart. I didn't take Gracie back to the class that it happened in for three weeks. That's how the words hurt her. Though she had no idea what was said, she missed out on one of her favorite times of the week three times. In reality, that's MY failure, I know. I'm not mad at that child or the child's parents...just myself and the devil. Me for letting him get to me. And him, just because I hate him!!!

Recently, I posted this on Facebook- "If I could stand in front of an assembly of the entire world, I would ask for just one thing. Be kind. It's not that hard. It doesn't cost anything. We have no idea where that other person's life journey has taken them today. Or where they will go tomorrow. Just be nice. And when you're not, own up to it." I believe that. I attempt to live my life this way. We have no idea how a simple smile might change a person's day. We have no idea when the rashness of our tongue will impact one forever.  

My Gracie is a 4 year old little girl, CHOSEN by God to have the trial of this stroke, for HIS glory.

She can't sit still- but she CAN sit- To God be the glory!!

She can't hop on two feet like other kids, but she can do it one leg at a time- To God be the glory!!

She has to ask the same question over and over before she finally gets it, but she can speak-To God be the glory!!

Oh and by the way, the word retard is a verb...

 Did the stroke retard Gracie's development? Yes, of course it did!! Is SHE a "retard"? No. Simply put, she's a miracle.

Ladies Tea

Yesterday, we had the 1st Lighthouse Baptist Church Ladies Tea!!  What a BUSY, fun day!! It started early, at around 4:30 am. Saturday's is bus visiting day, and I TRY to get up early and pray for all of our kids and workers on Saturday mornings. Then, we headed to the church for an extremely quick meeting and off we went. The tea was to begin at 1pm, so at 12 noon we had to wrap things up and head home. We got gussied up (as good as it gets in an hour) and off we went.

We arrived right on time and got our corsages. Gracie's promptly fell apart, LOL. She has inherited mommy's allergies, so that was probably for the best, anyway. The church looked absolutely beautiful. Some of the ladies lent out their tea cups and saucers and other antique items. 

We were served a very yummy lunch, which Gracie enjoyed much more than I had expected. Actually, she really enjoyed the melon and croissants, but hey, that's something!!

We then went upstairs for the wonderful teaching portion. Gracie didn't sit completely still the whole time, but neither did I!! Halfway through, she turned and asked me if Josiah was sick. I told her no and tried to explain to her quietly that he stayed home because it was just for ladies. She said "brudder usually comes to church with me though." About 10 minutes later, we were praying and she was fiddling around, so I told her to bow her head to pray. The next thing I know I heard:  "Jesus, help brudder get better so he can come with me to church. Amen."  No matter what you accomplish in life Grace, if you keep that loving heart, Mommy and Daddy will always be SO proud of you.

She didn't want to turn and look at me, but I just love the old fashioned effect of this picture!!

Dessert was yummy! Gracie tried the one with the green and cracked me up. It was mint, something her taste buds are just not ready for yet! However it was yummy to my adult taste buds....they all were. Hmmm, Weight Watchers meeting on Tuesday evening anyone?

After dessert, numbers were called and the winners got to take home one of the tea cups and saucers with a potted plant. Gracie was so excited when her number was called. However, she decided to give her prize to Miss Bea. Here they are together.

I might be biased, but isn't she beautiful?? (Both of them!)

Mrs. Hack gave Gracie another flower to give to her mommy. ***Life lesson 427- Always think of others when it comes to gifts. Mommy has much much more than she needs.

The theme was Precious Memories, and oh how precious every little memory is!!

Opening the prison doors

That theater has been my own personal prison. Two years ago, I made the choice to go in there and shut myself in and not come out again. It's somewhat safe in here. I get to choose who comes in with me, I get to kick people out as I please. If the conversation turns to something I don't want to hear (like the word die), I can put my hands over my ears and chant "I can't hear you" over and over. This is my theater. It's comfortable here too. The seats are cushy, the programming is great (it revolves around my kiddo's-what's better?), and I even brought God in here with me. WHY LEAVE??

Somehow, recently, my good friend anxiety allowed the panic to start setting in again. It's been small doses, comparatively. My comfort level has been significantly diminished though. This time, I have seeked out some Godly counsel (novel idea, huh?). I embarrassed myself in front of about 50 of my closest friends a week and 1/2 ago- and decided right then, THIS MUST STOP. My mom is leaving for Florida in a week. I should be going with her. I love Florida. My kids love Florida. They love my Grandpa, and he's not getting younger. Gracie talks about my aunts that live down there like she sees them everyday. I want to go. Why am I not? Are you ready for the most RATIONAL thought I've ever had? There's something about going to Florida that makes Gracie sick. We had come home from Florida about 2 weeks before the stroke, and then we had JUST come home from Florida when she had the huge seizure last year. I know, I know....my thinking is about as illogical as it gets. I KNOW this, I just can't get past the fear.

So, you've read this far and you're probably wondering why in the world I felt the need to blog about this! Well, first of all- I am a writer. This is what I do. I love to talk, but when  it comes right down to it, I would much rather write my feelings down than talk about them. Second, as I said before, I embarrassed myself in front of about 50 close friends a couple of weeks ago. What happened? Our church has a new outreach program called the Great Commission. The idea is to board one of the church buses and drive to a neighboring town and basically blitz the whole thing with tracts, witnessing and soul winning as the opportunity arises. I was SO excited for the first one. The church was supplying a nursery and everything. I packed the kids a snack, went to the church, and dropped them off in the nursery. I got on the bus, still excited as can be. By the way, I'm a bus worker. 

I ride the bus.

Every week. 

With lots of kids. 

They're loud.

Sometimes, they stink.

I LOVE IT.

So, being on the bus was not going to be a problem for me. I got on, sat down, and suddenly couldn't breathe. I felt my chest tightening and feet burning, and thought "Are you kidding me?" I had to get off the bus, right then and there. I knew immediately what the problem was- I had no way to get back to that church if anything happened. we would be half an hour away, ON A BUS. I was fine just as soon as I was back in control of the situation, driving the car behind the bus. Not before I hyperventilated and about clotheslines our Pastor and associate pastor trying to get off it.

So, those are reasons one and two. Reason three? I'm not the only person that anxiety and panic happens to!! Believe me, I am in no way an expert on how to get rid of these things, but I thought I could share what has worked and is working for me.

1. I know I made light of this earlier, but it is no light thing. It's the most important thing in the world. Check your salvation. I'm not for making anyone doubt there relationship with Jesus, but please do know that you know that you know that you're saved.

2. Keep busy, but don't over extend yourself. I think this should just be a rule of thumb, but we all do it. Today was a big day for the ladies of our church, we had our very first Ladies Tea. We are also right in the middle of our HUGE spring bus program. I am involved in the bus ministry, I have personal stuff going on, I am now working a per diem job, and of course, I have my family. I made a conscious choice NOT to help with the tea, instead to just enjoy the day with my mom and daughter. Would I have liked to help? Of course!! However, there just wasn't the time or energy for me to do so.

3.Get enough sleep and exercise. I'm not going to say an exact number of hours of sleep, everyone is different. For me, I need around 6 hours at night to function completely normally. A tired brain is an over reactive brain.

4. Pray, praise and sing. It might sound cliche, but it works.

5. Know your triggers!! Obviously, my goal is to be "normal", but in the meantime, I'm not going to purposely put myself in situations I know will start my panic. Slowly work your way back to your "normal".

6. Arm yourself with the Word of God. I'm all for Bible memorization, but in this case, I am going to suggest finding one verse that fits you and helps you. Memorize it. Write it down and carry it in your purse, put it on your dashboard, etc. Using just one or two verses over and over is not only comforting, but it also helps keep you from becoming overwhelmed. My verses are Isaiah 54:7, 8 "For a small moment have I forsaken thee; but with great mercies will I gather thee. In a little wrath I hid my face from thee for a moment; but with everlasting kindness will I have mercy on thee, saith the LORD thy Redeemer." and Psalm 27:13, 14
"I had fainted, unless I had believed to see the goodness of the LORD in the land of the living.
Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD."

I will conclude with that, but I will update on how I'm doing with my anxiety. Thanks to all who take the time to read this, and especially pray for us. I love you all!

.

Pitch black

In July of 2009, life came barreling at me full force like a locomotive out of control. One of my very favorite songs goes, "My life Lord, is Yours to control." Well, as a joke, I started to sing "My life Lord, is out of control." Things were happening left and right, and I truly had no control over any of it. I am a self confessed CONTROL freak! Unfortunately, the panic attacks came back during this time. They came back with a vengeance. I had the very worst one to date in the summer of 2009. I was sitting in my parents living room, nursing 5 month old Josiah. Suddenly, my ears began to ring and my arms felt like they were on fire. I had no idea what was going on, it felt like a heart attack.I yelled for my mom to come get him, and I tried to go outside. Before long, I was completely hyperventilating. My head hurt so bad I thought I might be having a stroke, yet my chest was so tight I knew for sure I was having a heart attack. My mom called 911, and when the ambulance got there, the men thought I was having a drug overdose!! They kept asking me what I had taken and I kept telling them just some Tylenol. Then I couldn't get into the ambulance, the thought of being stuck in there almost killed me. That's when one of the men took someone aside and said " I think she might be having a panic attack. She needs to go get checked out though." Sure enough, that's what it was. I did go to the hospital, and they suggested a slew of drugs. I politely declined, although I did take the Benadryl, seeing as I was itching so bad that I was quite afraid I might be left with no skin!!

The panic attacks once again followed the same pattern. That one was the worst of the worst, and then slowly but surely they settled down again. Strangely enough, I had only one true panic attack after Gracie's stroke. It was three days later, and the neurosurgeon had come in and told me she would be having the shunt replaced within the next couple of days. I had not yet left the hospital. My mom told me to go over to the RMH, play with Josiah and take a little nap. I did just that, and I fell sound asleep nursing him. When I woke up, he was twitching beside me. Just a little infant spasm. I immediately thought he was having a seizure and then I was immediately and completely convinced that I had rolled on him (even though I woke up a good 2 feet away on the bed). I can remember picking up the phone and calling my mom at the hospital, screaming and crying. By this time, Josiah was completely awake and perfectly fine. It had finally hit me though, that my baby girl had had a stroke. That she was lying in a hospital room, hooked to every machine imaginable, in a coma. She had to be on top of a pretty much freezing cold blanket, and yet she was still burning to the touch. The truth of the situation hit me like rough waves of the sea, and I fell on my knees and wailed like an animal. I had no choice but to just force myself to regain my composure and go back to the hospital, I had Josiah. So, that's what I did. I swept the gigantic purple elephant in my life back under the rug and went back to the hospital.

The panic attacks actually got better after that though. I realize now, it's because instead of a once in a while burst of panic, I became generally anxious all the time. Anyone who has followed this blog knows the struggles I had after Gracie came home. Yes, my fears were normal and somewhat justified (in our human minds)- BUT they are just that...FEARS. Fears that should have been dealt with inside of me. I've been living this past year and a half in a world separate from everyone else. Oh, I do my best to be happy and joyful, and most of the time my happiness is real. I still live in my own little shell of a world though, that world where in my quiet moments I sit and wonder when the other shoe is going to drop. It's like living inside a darkened theater. When a person first walks in, she stumbles to find a seat. It seems PITCH BLACK. Before long though, our eyes adjust to the darkness, and it seems normal. Well, somewhere along the way, I adjusted to this darkness inside me, and it began to just feel normal. Every so often though, someone will come in or out of the theater, and the light will stream in. In those moments, I'm reminded that I'm still in here, with the lights turned dim, hiding away in my little theater.
                                              To be concluded....

When darkness falls, part 2

  That night in the parking lot, I had my first of many panic attacks. Now, some of you might be laughing right now. Some of you might think that panic attacks are just a weakness. I've heard it all. "You had better pray more." "Check your salvation." ( Like the song says, I was there when it happened, I ought to know.) My favorite one ever- " Jesus lives inside you, you're making him have a panic attack right along with you. " Thanks. Now I have panic attacks and major guilt. LOL. During this time, darkness really fell on me. It was like a black cloud that just hung over me. I tried everything I could to get rid of that overwhelming sense of complete helplessness and hopelessness. I read the Bible, (I actually read the entire Bible out loud to Gracie by the time she was 3 months old, LOL) I read other good books, I prayed, I cried. I didn't talk much about it though. I never allowed myself to think about all of the possibilities. I kept up appearances too. I always knew that people would visit us at the NICU on Saturday's, so I would make sure and brush my hair and teeth and get out of my pajamas that day. I will never forget the day our Pastor's wife came to visit me on a Tuesday evening. She is a busy mom, and that was the only day she had that week. She walked in, took one look at me and said, "You ARE human!!" I was in a ratty old jean skirt, my college sweatshirt that has seen many better days, my hair was thrown in a pony tail, and worse of all- I had been crying. Over the past 2 years, I've gotten much better about crying in front of people, but I HATE to do it. Hate it!! When I cry, the whole world knows. My eyes get red, my nose is like a clowns, and I make the most awful noises.

So, it was in those days that the panic attacks started. We had to leave the hospital every night. I would walk around the house, trying to find something to do, trying to make an hour pass so I could call and check on her. As days went by, I would let 2 hours go. We worked our way to three hours by time she was about 8 weeks old. Sometimes, in the middle of the night, I would call and the phone would just ring and ring. The nurses do the "busy work" at night, weighing the babies, giving baths, etc. I knew this, but again, rational thought did not exist at that point. I immediately thought that there was something wrong with MY baby. They knew it was me on the phone and didn't want to tell me. Crazy right? My heart would start to beat like crazy. So hard I could hear it. Then my legs would start to tingle and before long actually burn. Next would start the itching. My whole body would itch to the point where I would scratch and make myself bleed. This would continue until I could finally get in contact with someone at the NICU. This continued for the months she was in the hospital. Then, like a magic wand was waved over me, Grace came home and my panic attacks stopped. Just like that.
                                           To be continued...again!

When darkness falls

I've never been one that was afraid of the dark. I can remember packing two or three face masks with me when I left for my first year of college. Every night, I would turn off every light I could, put a face mask on, put my little satchel of lavender junk over the face mask and go to sleep.

When John and I first married, we would have many late night "quarrels" over darkness. He would get up to get a drink, go to the bathroom, or eat a bowl of cereal at 3 am (who does that?)- and LEAVE the lights ON. I'm talking the hall light, the dining room light, the kitchen light. He could be as quiet as a mouse and yet still wake me up because of all the bright lights! He'd come back in our room and I'd remind him to turn off the lights and he'd always say" but I'm already back in bed!." It became a little joke with us...."John can sleep on a dime, Michelle needs the home sublime."

Then came Gracie. I was in the hospital with her for three nights, because I had a rough birth, they made me stay that extra night. Then the most unnatural thing in the world happened- we went home and left our beautiful baby behind. I can remember walking in the door that first night, and walking around our tiny upstairs apartment. The first thing I did was gather all of the phones we owned and put them on the stand in front of me. I was not allowed to sleep in my own bed for two weeks, because they didn't want me rolling. So, to the couch I went, feet propped up and the house phone, my cell phone, and John's cell phone right in front of me. John would sleep in the uncomfortable chair or on the floor in front of me, just to be in the same room. That first night, I got as comfortable on the couch as I could and John walked through the house and turned lights off. He got to the last lamp, at the end of my feet, and I started to hyperventilate. I mean, full out, breathe in a paper bag, hyperventilate. "Turn it back on, turn it back on!!" I cried/yelled to John. He turned it on and sat down on the couch with me. I curled up next to him, and fell asleep crying, clutching the phone in my hand. Thus began my fear of the dark. From that night forward, I have slept with some sort of light on. It doesn't need to be a bright light, or even a night light....just some kind of light. Darkness fell on me in that moment, and I allowed it to have it's very grip on me for quite some time. I remember the very moment that I realized I was in his power. We had left Gracie for the evening nursing switch, and I couldn't find my parents. (We sold our car 2 days before she was born. We had planned to buy a new one, but then we just didn't have the time.) They were going to take us home. I called my mom's cell, and she didn't answer. I was sure that something had happened, the nurses couldn't get through to my cell, and so they had called my mom. Completely irrational thinking, I realize. I stood there in that parking lot and BEAT on my poor husband. Just like something you see in a movie. He stood there and took it, and when I finally got it all out, he held me tight as I cried and cried. Then we saw the lights of the car, coming toward us- I looked up and felt blinded. I'd like to say I won a victory in that moment, but I did not. My daughter's entire NICU stay was one struggle after another, and many times, I allowed the darkness to win in my heart.
                                               To be continued....

A letter to my children

I started this post two months ago, when my own personal health crisis was looming over me like a dark cloud. It was put on the back burned, but as I reread it, I realized the truths in it that I do want my children to see. This is the "beginning" of this post. John is writing the portion to Josiah, and I will post it when he finishes.

Dear Grace and Josiah,
Over the past few weeks and months, I have thought long and hard about the people that I personally look up to and seek advice from in my daily life. I hope that in daily conversation, I talk about these people enough that you will know the impact they have had in my life. In case I have failed in that respect, I wanted to write about a few of them on here. There will be many people that I miss, but these are the people that I LOOK TO. Some of these people, don't even know that they are in my short list of "wise counsel", because they counsel me with their daily life.

For both of you,
Your Grandma and Grandpa. Grace, we have a long running joke that you love Grandma more than me. That used to bother me. It really got my goat, girly bug! It doesn't anymore, though. It's still a running joke, but just that. Your grandma is your best friend...and I can understand that , because she is also my own. She loves you, more than anyone else (besides Mommy and Daddy, of course). Josiah, there is no denying the bond that you share with Grandpa. As a 9 month old baby, you spent more time with him than anyone, as we spent our days in the hospital with Gracie. I'm so glad that you get to have this relationship with him now, I pray that you will always be able to remember that special love the two of you have.

 For Grace-

Everybody should have people that he or she looks up to, learns from, and especially that she can get Godly advice from. I hope that as you get older, you will be able to realize that Mommy does just this with these three ladies. There are so many others that I could put on here, but these three stand out for reasons I want to explain. I want you to learn to look for qualities in people, because it's not often you find it all in one person!!

 She was your very first Sunday School teacher and that right there says enough. You, my dear, were a pill even before the stroke!! For the first few weeks, she had to actually carry you around with her and teach the entire lesson with you on her lap. Mommy was in the nursery a lot at that time, and I would peek through the glass to see if you were ok. She would tell me to stay on my side and "be quiet! She can hear your voice, you know!" Then, when Daddy came to check on you, I'd say "Oh she's just fine!" as though I hadn't been staring at you all morning. Far beyond being your Sunday School teacher though, she has been MY teacher. This is the first quality that I pray you will seek when you look for your "people". Someone that you can easily learn from. A long time ago, I posted about someone who is always busy, yet never too busy. I want you to look for people like that. People that seem to always have their hands full with important projects ( and by important, I mean of importance to more than just that person)-yet will drop it all to help a friend. Look for people who will keep you accountable. Accountable to yourself, your Bible, your Lord. Over the past three years, through good and very bad times, she has done this for me.

The second person I am thinking of has not been "in" our lives much at all since you've been born. However, she has had such a great impact on my life that I still look to her often. A few years back, there was a slogan WWJD. Once it blew up, it became almost a joke, but in all reality, it was a good idea. As Christians, we should stop what we're doing from day to day and just ponder... What Would Jesus Do? The second trait that I am going to tell you to look for in a "friend" or "hero" is whether that person points you to Christ. With their lips, their attitude, and their everyday life. Does he or she make you stop what you're doing and wonder what Jesus would do in the situation you are in? I have watched this lady as she has completely surrendered her life to the will of God, and her willingness has changed me. Look for that-- that the way someone lives their own life makes you want to change yourself, for the better. There is something to be said for silent strength, and that is what I am able to get from this person. This lady gave a devotion at a bridal shower while I was pregnant for you, and words she said have stuck with me for the past 5 years. By writing them here, hopefully they will stick with me forever. She said, " (Insert bride's name),  (insert groom's name) will make mistakes. Love him more because of them. If you can do that one simple thing, love him more, you will be fine." I have lived for the past 5 years, trying to abide by that one simple rule. Look for people who love others. I don't mean that love the best dressed child at church...but the ones who easily will wrap her arms around the dirty bus kid. The people pictured below will never know this side of Heaven the lives they have touched. What's more important though, is the hearts they have helped change. Like ours.

The last person I will picture for you has probably taught me the most important lesson in my life. One that if we can get down, especially early on, will make our entire life happier. She has taught me how to GIVE. Over the years, she has given of herself, as she has FAITHFULLY prayed for our family. Though she can barely walk, she has spent hour upon hour upon her knees, talking to Jesus on our behalf. I want you to look for that- someone whom you KNOW has a prayer life. Someone who regularly goes to God for other people. Over the course of the last 5 years, I have learned what it means to give your all. The Bible tells the story of the widow who gave her two mites, and because it was ALL she had, she has been recorded as giving more than anyone else. Look for someone like that. Someone who gets her daily strength from the Lord, and then goes out and gives so much of herself that she has to go back the next day and the next day and the next day to get more.

Giving is NOT about money, but about love.

How we're doing

I am a bad blogger. A bad, bad blogger. It has been almost 2 months since I've posted!

Here's just a little snapshot of what's been going on-
-Grace has become addicted to Wonder Pets. And I am smiling about that. Yes, smiling. This is coming from the mom who was convinced that the TV was the devil and her kids would never watch it. I'm still on the fence about that, BUT it is huge that she can sit still and watch an episode of a cartoon. HUGE.
-She continues to do well in school, and has been approved to continue school straight through the summer. Kindergarten next fall looms over me like a huge black cloud. I had always planned to home school my kids, but I want her to get what she needs, especially for kindergarten and first grade. Unfortunately, what she needs includes a lot of individual attention and continuous physical, occupational, and speech therapy. So, it looks like she will have to go to school. It scares me. I mean if people that know exactly what is wrong with her and how injured her brain is don't always understand and have patience with her, how much harder will it be for an outsider?
- She had a seizure two weeks ago tomorrow. It was brought on by a UTI, and it was very scary. We were already in Rochester for a dental appointment, and when we arrived in the ER, they immediately treated it as shunt failure. That didn't even happen when she actually had shunt failure!! As a result, her seizure meds have been changed again. She is now on only Keppra and vitamin B6- just in higher doses. It's been almost 2 weeks since the switch, and to me, she seems happier. :)

- Josiah started big boy Sunday School! Since his tubes were placed in February, he has had a word explosion. I didn't even realize he might have been behind in speech, but now he talks all day! Love it! They continue to be the best of friends, although these days, he does like to try and tackle her.

***Please pray for Liam. He is the son of a friend, around Josiah's age. He is BaTTLING leukemia, and at this point has not walked in five days. His parents faith is strong, but they could really use our prayers.***

Procedure today

Some people have a life verse from the Bible. I have a life chapter, LOL. Of course, I do love to be different. It's amazing though, that every time something is going on in my life that causes me fear or distress, I can go to Psalm 27. He always shows me something there! Today, He has led me to verse 6. Sometimes, it truly feels like a sacrifice to be joyful, but God asks us for sacrifices of joy, and for us to still sing praises to Him. Even though I am scared today, I will continue to sing praises to the One who already knows the outcome.                                

If you have read this blog in the past, you know that Victory in Jesus is very a special song to me.  I've decided that I will sing this song today, to remind me that He is always victorious.

A note about the procedure that I will have today. It is called a LEEP procedure, and I have had them done in the past. This isn't the first time I've had abnormal cells, it's just the first time I've had them along with elevated blood tests. Previously, the abnormal cells were rated a stage 1 abnormal, and these ones were rated stage 4. The procedure I will have done today is not painful, but does cause pain afterward. I will not need to be sedated, just some local anesthetic will be given, and I'm sure I will be wishing for more once the pain sets in!! The oncology doctor will be right there to test the cells they get, and they will remove all abnormal cells they see right then and there. Then he will test those cells and I will get all of the results, hopefully by Friday. Thanks for praying.

More than I can handle??

"There hath no temptation taken you but such as is common to man: but God is faithful, who will not suffer you to be tempted above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear it."
Have you ever noticed that when people are going through struggles and trials, this verse gets quoted a lot? Or actually, misquoted and misinterpreted a lot? Over the past two years, so many well meaning people have said to me, " God promises not to give us more than we can handle", or even better- "Whatever happened to God not giving you more than you can handle?" I'll be honest here. There have been times when I've gotten alone with God and asked Him why. Why was my daughter born so early? Why did my daughter have a stroke? Why does my girl have a hard time walking? Why might I have cancer? Why, why, why??? Is this sinful in and of itself? Asking God why? No, I don't believe so. I mean, Jesus, the sinless One, asked that question why. He asked God why He had forsaken Him. My sin is self absorption. It's not the why, why, why- but the me, me, me!


So back to the verse above. I'm not even sure whether physical illness is included in temptation, but for now I'll just pretend that it is. This verse was written to saved people, God's children. So, I don't take this verse to say "Michelle, I won't give you more than you can handle." I take it to say(very loosely interpreted, LOL) "Michelle, I've already given you more than you can handle on your own. Remember Me. Talk to Me. You can't handle it on your own, but together we can get though it, and your faith in me can be even stronger. I will make a way for you to get through this."

I have been singing this song for the past couple of weeks, quite often. I will just continue to trust God's heart.



God is good!

A post about me

 So, a couple of weeks ago, I started to have quite a lot of pain in my right side. It was pretty bad, but tolerable for a few days. Then, it got so bad that I drove myself to the ER, during a snow storm. I FULLY expected that it was a kidney stone, I have had them before and it is exactly what it felt like. The doctors there took a few blood tests, then sent me for and ultrasound. As I had suspected, she immediately found a kidney stone on the right side. However, she then moved to look at the left side. I've seen that look on a sonographer's face before, the day I was told that Lily's brain was only partially formed. Knowing that I'm not pregnant, I really wondered what was going on in my body. The lady, who had been quite chatty with me before, was suddenly silent. She finished the ultrasound, and sent me back to my room.

Within a few minutes, the ER doctor was back. He wanted to send me for a CT of my abdomen. I asked him what was wrong and he said the ultrasound had showed a large mass on my left ovary. I've had PCOS for years, so this didn't bother me too much. The CT was easy and before I knew it, I was back in my room. That wait was miserable. The doctor finally came back in and told me he wanted to admit me, for an immediate hysterectomy. I was in shock and said no way! He told me that the mass was 16.7 centimeters and had cut off blood flow to my left ovary. The chances of cancer were high and they needed to remove it immediately. I asked if he knew for sure it was cancer, and of  course, they had done no biopsies or anything. So, I said I was going home and that I would call my own doctor. I had a ton of instructions and I had to sign papers stating that I wouldn't hold the hospital responsible if anything were to happen.

Fast forward a few days. Gracie got sick and was put in the hospital in the midst of everything. On the Monday after my ER visit, I went to my regular OB/gyn. He wanted to do an in office needle biopsy and blood work. The Ca-125 came back high. So, we sat on pins and needles again. On Sunday night, I was feeling perfectly fine, just a little more drained than normal. Suddenly, I realized I was bleeding, quite badly.On that list of instructions, number one was to return to the hospital with ANY bleeding. So, off I went. I got there and it was BUSY!! They stuck me in a room, put an IV in me and then did nothing. Finally, the same doctor I saw before came in. He ordered a blood pressure check- both sitting and standing. Wow. What a difference an hour can make! When I got there, my BP was a very normal 117/68. At this point the sitting BP was 89/56 and the standing was WAY lower. The nurse, who knows me as "Gracie's momma", looked quite concerned, and got me back in the bed immediately. I had to go for a CT with contrast, so I drank some NASTY stuff, and then I was basically knocked out from morphine. I woke up about 4 hours later to the doctor calling my name. I barely even remember having the CT scan or anything. I do remember when he injected the iodine into my IV, because I was mortified. It gives you a warm, fuzzy feeling all though your body...AND it makes you feel like you wet your pants!!! When I did wake up, the doctor had every intention of admitting me to the hospital. I even had a room number. Then I told him I was scheduled to see a specialist the next morning, and he sent me home. He said that it would be 2-3 days before I couldsee him inside the hospital, so he would send me home with strict orders to make my appointment.

Anyway- I'm tired of typing, so here is the condensed version- the hospital had to give me 2 units of blood. The next morning, I found out that the mass had gotten 6 cm smaller. The doctor did a needle biopsy and was able to get clear fluid from it easily. This test came back with level 3 precancerous cells, and the Ca125 came back higher than the first one. I also had a level 4 pap smear, which means abnormal cells there as well. This coming Wednesday, I will go in for a LEEP procedure. The doctor will go in and get scrape the abnormal cells out. Those will then be immediately tested, with both a radiologist and oncologist standing by. The specialist I see is about 95% sure that there is cancer there and he will need to remove the entire cervix. I'm going to be honest about how I am. I'm tired, in pretty constant pain, and scared. I have hope though. "Why art thou cast down, O my soul? and why art thou disquieted within me? hope thou in God: for I shall yet praise him, who is the health of my countenance, and my God."

God is good!!

Opthalmology update

So, we went back to the local eye doctor yesterday. She has an appointment in Rochester in April, but I have been seeing far too much squinting and head tilting to wait that long. She has needed to have her eyes dilated so that he could get a good look at her optical nerves, but since the seizure that was a no- go. Things like that can increase blood pressure, cause a child to pass out, and then a seizure can occur. I talked to her neurologist about it though, and she said that those chances were very slim and that I should go ahead, because we need to find out about the condition of her eye. I agreed wholeheartedly....but that didn't make me any less worried!!

I explained to her that the man was going to put a drop in each eye and that it was going to hurt and make her vision blurry. She was nervous, but ok. Then he came in (an assistant, not the doctor), and I asked him how long it would take to wear off. His answer- "Sometimes two minutes, sometime two days. Now hold her down." Um no. My already unstable on her feet child can NOT have blurry vision for TWO DAYS. That's unacceptable!! So I told him I'd like to wait and talk to the doctor about it. He was visibly annoyed...oops. The doctor came in and told me he was planning on using the fastest acting eye drop on her, and that her vision should be mostly normal by the end of the night, and then back to normal in the morning. He also apologized for the other man- he had been standing right outside the door. I held her down while he administered the torture drops, and we went out to play for a while. Oh my, she was like a drunken sailor. Her vision being blurry upset her at times and made her giggle at other times--- she was just off the wall.

Finally, it was out turn to go back in. She hates bright lights, and he has to use a very bright one ( think flood lights) to see her nerve. So she squirmed and cried and kicked the chair. MY CHILD IS STRONG!!! I could barely hold her, but he did get an "ok" look.. Here's the surprise. Her nerve looks perfect. Her eyes are both farsighted, at 150- but he said that it's normal for a child this age and he wouldn't give glasses for it. So, now we are both left wondering about the visual field cut. Since her nerve is perfect, the field cut is unexplained. However, she definitely turns her entire head and strains her eyes to look at anything from a distance. Thankfully, yesterday he was able to see her do it. Now he knows what I'm talking about and that I'm not completely crazy. The only thing he can think of is that she started doing it when she first began to get her vision back and so her brain has trained her head to turn to look farther away. It's definitely not the definitive answer I wanted, but I guess it's better than something being terribly wrong in her eye. So, we will just keep an eye on it and if it gets worse, she will go back, but otherwise, we are good for 6 months.

Some pictures from yesterday:

 She thought it was hysterical when I told her that the thing in the middle is the way a phone used to look "Mom, you're a silly willy nilly willy!"

 "Grace what do you see?"

"A hot balloon"

Which sounded like " a dead baboon" with her mouth crushed up. So funny.

 "Oops, Mom I fell. Where's the floor?" After her eyes were dilated.

Get thee behind me

I have been discouraged lately. I mean really discouraged. This is hard. There are so many times that I sit in a room full of my friends and family, and I feel like I'm all alone. Grace attends Sunday School, children's church, and a Pee Wee class at our church. This past week, we started Teaching and Training classes at church and so Grace now attends King's Kids during that hour. All of her teachers are amazing. They are people that I have looked up to through out my Christian life, and I am beyond thankful that she is being taught by each of them. However, I find myself wanting to just keep us at home. I feel as though she is a burden to her teachers. A hindrance to the class. She doesn't sit still. She doesn't seem to pay attention. She loves kids and playing with kids, but when she gets around too many at a time, she doesn't really know what to do. Her little brain lost all of it's inhibition receptors when she had the stroke, and so if she sees one child jump up and down, she automatically thinks it's time to do just that. Then her brain forgets to tell her to stop. So she continues to jump up and down. There is a good chance that she has TRUE attention deficit disorder, a REAL disease that has become so mainstreamed that it's almost a joke. So, I have options. I could put her on more drugs. I could do that.   I mean, really what's one more?

I could take her out of the room and spank her, every single time that the neurons and synapses in her brain don't fire exactly right, and she does something naughty. As a matter of fact, I have done just that for the past year. I can yell at her, more than I already do, and expect that to bring results. Her neurosurgeon has likened her brain to that of an Alzheimer's patient.Can you imagine pulling down your grandma's pants and spanking her when she forgets?  Well, that's basically what I have been doing to her for over a year. I'm not saying she doesn't ever deserve to be spanked...she has MANY times when she is willfully naughty. She also has many MORE times though when she just doesn't understand. Or even worse for her, she does understand, but her brain just can't make her feet sit still.

I guess I don't even know what the point of this post is. It's hard to walk into a room full of other kids and have your child be the one off in the corner, playing by herself. It's hard to go to church on Wednesday nights and know that she looks so forward to her PeeWee Club, yet I dread it. It's hard to paste a smile on my face and say hello to people after my daughter has been called "Dum Dum".

Well, I wrote all of that ^^^ this morning. I considered just completely deleting this post, but I took the time to write all of it, so obviously it needed to be said. For me. Since then, I've taken Gracie to her eye doctor appointment and had some one on one time with her. On the way home, we were listening to a CD with the song "Where He Leads, I'll Follow". She piped up from the back "Sweet are da promises, kind of like the Word" in her adorable voice. I asked her where she knows that song from ( she sang it in the car last night too), and she said she learned it at her church. We kept listening to it, me with tears streaming down my face.

"List to His loving words, “Come unto Me”;
Weary, heavy laden, there is sweet rest for thee;
Trust in His promises, faithful and sure;
Lean upon the Savior, and thy soul is secure."

I know the answer to my problem.  Doesn't make it any easier, but I do know the answer.

I am the mother of a disabled child

I am the mother of a disabled child. 

I have a handicapped parking tag in my car, and although we often get odd looks, we have to use it.

My daughter is 4.5 years old and can't sit still for more than 2 minutes.

At least once a month, I spend 2-3 hours on the phone, making doctors appointments.

I am the mother of a disabled child.

When we leave home for the afternoon, I'm not worried about remembering snacks and extra clothes. I'm worried about remembering Diastat in case of a seizure.

The sound of my phone ringing in the middle of the day often causes a mini panic attack. 

As does the sound of an ambulance, even when my children are right there with me.

I am the mother of a disabled child.

And I am Blessed beyond all measure because of it.

Being the mother of a disabled child has ENABLED me. 

It has enabled me to see that pain in other mother's eyes and hear that despair in a voice.

It has given me the courage to say "Is everything ok?" "Do you need to talk?"

It has enabled me to pray harder and love deeper than I ever even knew was possible.

It has taught me to truly treasure life and all it has to offer.

There is true joy in watching the light bulb go off in your child's head. Seeing understanding for the first time is priceless.

I hold my breath as she tries to open the tiny clasp on a toy, and clap my hands and let a little shout when she gets it. Others probably think it's odd...to you, it's almost like those first steps all over again.

I have a desire to learn to love the unlovely.

I have learned that there will be situations that NOBODY will understand. That I will feel completely and utterly alone. Afraid. Tired. 

I AM NEVER ALONE.

"Be strong and of a good courage, fear not, nor be afraid of them: for the LORD thy God, he it is that doth go with thee; he will not fail thee, nor forsake thee."
"Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness."

I am the mother of a disabled child.

It is no accident.  

He chose me. 

He loves me. He loves her. And I love Him...a lot more because I am the mother of a disabled child.

Orthopedics update

Well, I meant to post this the other day, but totally forgot. We went to the local orthopedist last Thursday, to see if we could figure out any of Gracie's leg pain. I found out quite a few things!

First of all, he laid her down and did a bunch of little muscle and muscle memory tests and they all turned out GREAT!! He said that her tone in her leg muscles is still high, but that for a child who has had a stroke and has CP, she has done amazingly well. Her neurologist has discussed doing botox shots with us, but this doctor said that that is one of his LAST resorts. He checked her braces and has decided that she needs new ones again. I find this funny, because her feet actually haven't grown much since September! The braces she is in now have a hinge in the heel area. The original brace she was in was just a straight, rigid brace. We will be going back to the rigid brace. Her right heel cord is too tight, and he feels that having that rigidity behind there will strengthen it up. So, we will be heading to Rochester for new braces soon...and also an opthalmology appointment.

We go back in 6 months. He wants to see a 75% improvement in the heel cords by then, and if not, we will be scheduling surgery at that point.

I'm gonna be a bus worker!!

The very first ministry that I got involved with when I began going to church was the bus ministry. I was asked to work it one week as a substitute for someone, and I FELL IN LOVE. So, the next week, I went to another bus meeting, and before long, I was riding the bus weekly. Leading music, loving kids, getting the opportunity to lead children and adults to the Lord---there is nothing else like it. I met the love of my life on the church bus. He was a rider at the time....see how good God is?

Well, anyway, yesterday our Pastor preached on life goals. Back when we were first married, John and I made a goal that we would ALWAYS be involved in the bus ministry, in some way. We knew it wouldn't be logical to say that we would always ride...but we would always be involved. We also made a goal that our children would be involved right from the beginning. We want the bus kids to be our kid's friends. When Gracie was born and in the NICU for almost 5 months, we obviously had to take some time off from riding the bus. Unfortunately, I allowed my fears to get the best of me. "Oh the bus is too cold for her" In the summer. "Oh the bus is too loud." So, we never got back on the bus. Then I got pregnant with Josiah, and if you know me, you know my pregnancies are not the 9 months of glowing skin that you read about. I couldn't step foot near that bus if I wanted to. So, the platn was to get back on the bus when Josiah was 1. Well...strokes happen! So we didn't get back on then either. Our love for the bus ministry and those kids never waivered though. Gracie started talking about being a bus worker back before the stroke. Most kids see the big yellow bus and want to ride it, but she wanted to get on there and work!

This past week, she has talked about it incessantly. "Mommy, when will I be a bus worker?" "Mommy, I will ride the Southside bus." (Yep, she's trained well...Southside girl through and through!!) "Mommy, I will go to bus meetings and bus calling this week?" I had planned on waiting until spring, when it's a little warmer. Then yesterday's message got me. SHE DESIRES TO SERVE THE LORD. Right now. What's that saying... get in while the gettin's good? So, yesterday afternoon, WE  rode the bus. Is Gracie a bus worker? Not on our church record books...she has 9 years to wait to be considered an official "bus worker". God saw the hug she so freely gave to one of our adult riders yesterday, though. He saw those tears in that precious lady's eyes.

Kids, I pray that you will always have this heart. Don't let life or the world harden you. Remember, as a 4 year old child the excitement and joy as you climbed on that bus. "I'm gonna be a bus worker! Josiah we're gonna be bus workers!!"

It's the little things...

that mean the most!!!

"For the person for whom small things do not exist, the great is not great."

"I am beginning to learn that it is the sweet, simple things of life which are the real ones after all."

"It isn't the big pleasures that count the most; it's making a great deal out of the little ones."

"Life is made up of small pleasures. Happiness is made up of those tiny successes. The big ones come too infrequently. And if you don't collect all these tiny successes, the big ones don't really mean anything."

This may seem like an odd picture to some. To others, those who remember the days of "if she eats anything she can't drink until you check her mouth because she can't feel the food in there and she might aspirate." (Always said in a rush of words, with no breath taken: hence the lack of punctuation, LOL.) Or, "She has her own sippy cup in the bag. She can't drink out of the dixie cups or out of straws, she gets too much and she might aspirate." Or, "She aspirated last night, so her cough is from that, she's not sick." There are countless more that I could write on here that friends (especially Brenda) would recognize, but I'll skip that. 

The other day we were expecting some snow; so like every one else in the tri county area, I went to Wegmans. After we got all the little neccessities, I saw this cute set of plates/cups on sale for CHEAP. I like cheap. As a matter of fact, it's one of my favorite words. Gracie needed a new plastic plate and these were cute, and again..CHEAP. So, I grabbed the plate...and then it hit me. She needs her very own "big girl" cup, because she has gotten to that point. WOOHOO! So, we grabbed the panda cup and off we went. I took it home and explained to her that she had a new cup, but that we would still keep the old ones with the lids for car rides, etc. She was so excited!! She's drank from regular cups many times in the past months, but I still watched nervously as she drank the milk from it. She did GREAT. Juice still gives her a little sputter every so often, but it's nothing she can't clear on her own.

See, it truly is the little things. Let me put it into perspective. Last year, three days after she had her shunt  revised, a doctor came in and told me some of what to expect. Animalistic movements and sounds, that could last for days, weeks, or forever. She wouldn't walk or talk- and if she did, it wouldn't be "normal" by any means. She would probably wear diapers for the rest of her life. Her face would be droopy. SHE WOULD NEED TO BE TUBE FED, because the stroke affected the part of her brain that tells you to swallow.

To some, it's just a cute cup with a panda bear on it. To us, it's one more of the little things that make up the HUGE things. God has been good.

Bargaining...

Gracie has been wearing AFO's (braces) on her feet up to her knee since January of 2010. She has a love/hate relationship with them...some days they help her a lot(such as in the snow). Other days, she comes home from school with welts on her little heels and bruises on her ankles. I made a deal with her, back in September- she only has to wear them on school days. So, Saturday and Sunday and any time we have to make a trip to Rochester (unless we are going to see the orthopedist, of course) she gets the day off. It's funny...she hates those braces, but she loves school more. Yesterday was quite the day though. I asked her to go bring me her shoes- my first mistake. Of course, she

came back with her black church shoes. So, I told her it was a school day and she had to wear her braces. She gave me that look. If you have children, you know the look I'm talking about. I think I even have it caught on camera...yep, this look right here.

 

Being the mean mommy that I am, I told her that she had to wear her braces, that it was a school day and it was snowy and slippery outside. She brought them to me, under duress. Here's the conversation we had as I squeezed the torture contraptions on her.

G-"Mommy, they hurt my feet. I don't want to wear them today.

M- Where do they hurt your feet?

G- Ummm, on my feet. ( Said with a slight eyeroll and voice inflection that leads me to believe she thought I didn't know where her feet were.)

M- But which part? Does it hurt here, or here?

She points to her heels and her ankles. 

M- Well we are going to a doctor on Thursday that will be able to help with that. 

GRACE DOES NOT LIKE GOIN G TOANY DOCTOR EXCEPT HER PEDIATRICIAN.

G- (Big smiles and claps her hands) Oh good!! (They must really hurt her.)

G- Mommy, can I wear my black shoes today?

M- No, honey, today is a school day. You wear your other shoes on Saturday and to church on Sunday.

I can see the wheels in her head turning. She gets the sweetest little grin you ever did see on her face and says-

G- Mommy, I'll go to Sunday School today. I NEED to learn more about God. PWEEASE?"

Ugh, she was so cute, I almost caved!

 As I said, she does have an orthopedist appointment coming on Thursday. This is a local doctor that we haven't seen before, so please pray that he might be able to help her in some way. It is truly heartbreaking to have your child wake up, night after night, crying because her legs HURT. The hardest thing is, she doesn't wake up completely, so we can't even give her any Tylenol or anything. Botox injections have been considered in the past, this might be the path that we go down next. We shall see on Thursday!!

Happy New Year!!

Wow, it's hard to believe that 2010 is actually over and we are 2 days into 2011! What a full year it was for our little family!! I was thinking about it yesterday and realized that both of our kids learned to walk, talk, run, and jump together this past year. What a joy and privilege it has been to get to watch God's hand as He has worked in all of our lives! We wish you all a wonderful 2011!

Some picture memories of 2010