Lessons learned in 2011...

This year I learned....
That no matter how hard I try to convince Him otherwise, God is always right.

I learned...
Two wrongs never make it right...they just make a mess.

I learned...
I have the tendency to be a "bad weather Christian." I sure do run to God with my tail between my legs when something goes wrong! I'm quite sure that he feels awfully abandoned by me on the good days, though.

I learned...
That the real struggle actually begins when you finally get to the end of yourself.

In 2012- my goal is simply this. Keep it simple. Get back to just living, laughing, and loving. My verse for the year is " Let the words of my mouth, and the meditation of my heart, be acceptable in thy sight, O LORD, my strength, and my redeemer." I see a true need for me to rein in my thought life, so that I can rein my tongue, which will therefore affect my actions.

A testimony I'd like to share...

This young man took the prayers of my heart for you, Grace, and he put them into words. In case this link disappears, I want you to know the words he said- and live by them.

"I often say, that medically speaking, I shouldn't be able to talk. But because I can, I assume that there is something that God wants me to say. And medically speaking, I shouldn't be able to walk. But because I can, I assume that there's somewhere that God wants me to go. And despite the physical adversity that God has brought into my life....despite the pain that at times I have felt has been too much to penetrate, I have found that crying out to God, OVER and OVER again is the ANSWER to that adversity."
Dave McCroskey.

What an amazing young man!! We will be adding him to our prayers.
http://www.youtube.com/watch?v=Vd7lfwS97D0&feature=youtu.be

Aunt Fret

Tonight, we went to the nursing home to see my Aunt Fret. Gracie was all excited, we had visited her before, and she sat in the hallway with us and talked. Well, now Fret is getting ready to meet Jesus. She lays in a bed, very close to the floor, with oxygen on. We walked in, and Gracie immediately walked back out. She told me she was scared. we walked around for a few minutes, and I tried to explain the machines to her. SHE KNEW WHAT IT WAS. She looked at me and said " I know that's a breathing machine, Momma. I don't like it in there." Like the sweet girl she is, she did go in with us. She sat right by Aunt Fret and told her she loved her. She listened as I read to her from the Bible. When we left, she was a bit sad and subdued.


Later, she told her Grandpa that she had gone to see her Aunt Fret. She told him that " she doesn't get up and go sit in the big room anymore. She has a nice bed though and a machine to breathe. They keep it right next to her and she has a duck and a TV. Her hair is soft and she'll be happy with Jesus."

2 years ago today...

We were standing in front of a CT room as the words you never want to hear were being yelled. "Code blue, bag her stat!!" I was standing in a hallway, watching as Vicky jumped on top of my 3 year old daughter and began administering CPR until the equipment small enough was brought to her. 2 years ago, we sat in the PICU as a nurse rushed past us with a DRILL and we listened as a doctor we had never even met drilled a burr hole into the front of her head. 2 years ago, I sat in a wheelchair in the middle of the PICU, basically rendered speechless and unable to cope, as my Pastor took over and took care of every detail for us. 2 years ago, we rushed into the doors of Strong Memorial Hospital and up the PICU- no clue what we were going to find when we got there. 2 years ago, we were told that our sweet girl would be "a vegetable", "a shell of what she once was" and "not the same Grace we know now." Two years ago today, God began to use our sweet girl to show us just how powerful, loving, and merciful He is.
In two years time, we have had so many triumphs!!!

From this:

to this:

We have had setbacks....

blindness, seizures, and multiple illnesses to name a few!!

And we have had an amazing amount of fun!!

In two years time, we have learned that grace of God truly is sufficient. In the good times, the bad times, and the times we didn't think we'd make it through another minute, He has pulled us up and held us in His hand. He has used so many of you that read this blog to make us laugh, dry our tears, (or let me soak your shoulder), and just keep us fighting the fight. So, thank you....for reading, praying, and loving us! We love you!!

"And he said unto me, My grace is sufficient for thee: for my strength is

made perfect in weakness. Most gladly therefore will I rather
glory in my infirmities, that the power of Christ may rest upon me.
Therefore I take pleasure in infirmities, in reproaches,
in necessities, in persecutions, in distresses for Christ's sake:
for when I am weak, then am I strong."

Prayers...

To my babies:
I sat there last night, beside both of your beds, and prayed. Gracie, I prayed that you would always be as stubborn, loving, and tender-hearted as you are now. I prayed that as your brain heals, which it does every day, you would never lose sight of how far God has brought you. I prayed that as a family, we would never forget. We might move on, one day I might stop explaining to people that you have a TBI--- but please, Lord- let us never forget. I prayed that the circumstances of your early life would cause you to desire to help others. Josiah, I prayed that you would always love me as much as you do right now, no matter what mistakes I make. It's the love of my babies that gets me through some of life's toughest days.You are such a smart boy. I prayed for you to grow and mature into a wise young man- one who gets his wisdom from God, not the world. I prayed that, just like your daddy, you would always wear that cowboy hat and boots. Be your own man!!

For both of you- I prayed for your friends- the ones you have now, and all that you will soon meet. Lord, please help them to make right decisions in their lives. I prayed that you would always be a good influence on those you meet. I prayed for your service. That you would serve God...but not because Mommy and Daddy force you to, but out of love and desire. I even prayed for your future husband and wife!! I had to giggle a bit as I thought of either of you married! Gracie, please don't hit your husband if he steals your last yummy yummy. And Josiah, please learn that chocolate is very important to a woman!!

I love you both. Some day in the future, you'll have a bad day. Believe me, you'll have days that you feel like can't possible get any worse. I pray that they are few and far between, but that when they do come, you learn. When you get there, and you're at your wits end, I hope you'll read this, and feel a bit better. No matter what, your mommy will pray for you.


                                                    1 Samuel 1:27  " For this child I prayed..."

Month of Thanksgiving...

I've noticed a lot of my Facebook friends have been doing posts about what they're thankful for every day. I had decided at the end of last month to do something a bit different this year, seeing as I seem to always be thankful for the same things. Which I still am, but there's only so many ways to say it. So this year, I've been asking Gracie and Josiah what they are thankful for and writing it down every night. They are 5 and 2.5. Some of the answers have been hilarious, some have been pretty selfish, some have been rather...eye opening. So, here we go. Our first week.

This is how the conversation went on Monday.
"Me- Mommy is going to ask you what you're thankful for every night. That means something that you really like or something that made you very happy. Ok?"
"Gracie- Daddy bought me a new Minnie Mouse blanket."
"Me- And you're thankful for that?"
Gracie- "Yep. My dog likes to sleep on it."

So, like I said sometimes, it's quite funny. And Josiah usually has the same one word answer. Mommy. Which is cute and sweet and adorable. Anyway, without further ado.
Monday- Gracie was thankful for her Minnie Mouse blanket. Josiah said "mine mommy"..
Tuesday- Gracie was thankful that her grandma was coming home from Florida. Josiah said his cup and his bed.
Wednesday- Gracie was thankful for her dog and that her Grandma and Uncle Timmy were there. Josiah was thankful that I read him books.
Thursday- Gracie said she was thankful that she got to go to the library at school and that I read the book to her at night. And that she had a coat and gloves and that I put yummy yummies in her coat pocket sometimes. And that I get to come home at night (which made me cry). She was very sweet and thankful that night. Josiah said his usual Mommy that night, but with much coaxing he said his hat.
Friday- Here's the eye opening one. Gracie said she was thankful that I fill up her lunchbox for her every morning. She said "I get hungry at school, and then they give me my lunchbox and my mommy always fills it up." Josiah said Mamma. That's his word for Grandma.

What am I thankful for? That my two beautiful children have so much to be thankful for. That my beautiful daughter has the capacity to tell me what she's thankful for. That my son loves me so much. You know....just the normal stuff.

Picture time!!!

The good stuff.

Life is all about balance, it seems. Finding that perfect balance of good and bad, happy and sad, love and hate...it's what we humans strive for. We crave it. And, at the end of the day, I think we all hope and pray that the scale tips a tiny bit to the good side. Last week was hard for me. Although I did my absolute best to put that new diagnosis out of my head and just move forward, I'm still human. In the dark of the night, words haunt you. For the past few days, those words have haunted me.

Today, I took a step back and really thought it through. The words "brain bleed" haunted me. The words "cerebral palsy" haunted me. The word "stroke" still haunts me. "Shunt failure" will ALWAYS haunt me. Still...they are only words. I need to achieve a balance!!

So, tonight was the first time PeeWee's sang for the year. To be 100% honest, I dread the performances. I can remember when Gracie was really little, watching the kids up there singing. I would smile and giggle and daydream about when she was old enough to sing with them. My daydreams didn't include me having to stand next to her and tell her to stand up, stay still, don't jump, etc. That's what I do though, and I do it gladly. It was our choice to have her be in the club. It would have been much easier to just have her sit it out until she could stay still and pay attention. She has an 80% injured brain though, so whether she'll ever really be able to sit still is kind of up in the air!! We wanted her to be with the other kids her age and be a part of the activities of the church. She gets so much out of it, too!!

Last year, she stood up there with the other PeeWee's every performance, and never uttered a word from the songs. It looked like tonight would be the same. The kids got through the first two verses of the song and she never even tried to sing (though she knows every line). Then the third verse started and she got excited and jumped up and down and said, rather loudly- "This is my favorite song!!" Then it happened. She sang. "He invites me to His bakery table. His banner over me is love." Yes she said bakery. It's ok, I'll take it.

I almost made it, but I didn't. I had tears streaming before we got off the platform, and had to go to the ladies room to just sob for a few minutes. You know those wonderful, POWERFUL, cleansing, HAPPY tears? Some more words that haunted me?? "She may never talk again." Well, tonight....she sang.

Balance. Tonight, it's tipping toward the good stuff.

The hard stuff

Sometimes life is just plain hard. Today was one of those days. I was trucking along at work, loving my job, but still counting down til I got to get home to my family. As I do everyday. My phone rang and I saw the 585 area code. I recognized the number as Gracie's neurologist, and knew immediately that she was calling about the testing that Grace had done at the beginning of this year. She is honestly one of my favorite people, so I look forward to our monthly phone conversations. She also agrees wholeheartedly with me about trying every non medicine intervention before going to medicine, so it makes it easier to get along with her.

We chitchatted for a few minutes, as always. She wanted to know all about kindergarten and Sunday School. She asked how John and Josiah were. She asked me what color my hair is--- I had mentioned I was coloring my hair the last time we spoke, and she remembered. See why I like her? Then she took a deep breath and I knew it was coming. THE HARD STUFF.

Grace had an IQ test back in the summer. The results were used to help get her into her class at school, so I knew they weren't great. Dr. Hughes said that for a child with Gracie's history and extent of brain damage, they would EXPECT a score of between 10 and 15. Grace scored in the low 70's. Isn't that amazing? It's awesome!! However, average is around 100. SOOO...I had to hear a word that I hate. I had a whole post about it not so long ago. "Grace is considered functionally mentally retarded." I wanted to scream. I wanted to tell her how crazy she was, that those test scores mean nothing. I wanted to tell her that my daughter can hold her own in a conversation with adults, she has a huge vocabulary, and she can remember the words to songs after hearing them once. I wanted to cry...and I did. I walked outside and around the corner, sat down in the grass, and I cried. Then I regained my composure, went back inside and thought about what she had said.

"She should be on the other end of the scale."
"There is no logical or medical reason why Grace functions so well with so little working brain."
"She's doing awesome. Her score went up 23 points in a year."

That word that I hate? It's just a word. It doesn't mean anything. Just like when autism got thrown at us, I have to realize that these diagnoses are just terms used to describe what we already know. What we do with them is what matters. I could throw in the towel and give in it. Or I can look at the bright side...She's smart as can be, but it's almost impossible to test her. She's way above and beyond whats to be expected of her!! She's gained over 20 points in one year!!

So that's where we are today...same girly as always. Mommy is just struggling with the hard stuff.

Moments in time...

Gracie's 5th birthday is VERY quickly approaching! Last night we were sitting in her room, chitchatting with the lights off. I asked her what kind of cake she wanted for her birthday party and who she would like to invite. She said she wanted a big cookie, "like the one you made for Chad, my mommy." Which I found especially funny, because she only heard about that cookie, it got eaten before the kids got a piece. She wants me to decorate it like Mickey Mouse...guess I should have taken the cake decorating class at church last month!!

Anyway, then I asked who would like to invite. She said only one name, a child from her class at school. He has hydrocephalus like Gracie, but he doesn't talk and uses a wheelchair. He's also one of our absolute favorite little people in the world. I told her that we would definitely invite him, and she clapped her hands and did her special Gracie laugh. Then she got really quiet and said " He doesn't get to play with all of the other kids. Like I didn't used to. But he's my best friend because I love him. Except for brudder." (Then she pushed Josiah off the bed, but we'll pretend it was a completely sweet moment!!!)

It's moments like those that make my heart swell with love. Love for my baby girl, and love for my Jesus. Whom I have not given as much praise and glory and attention as I should lately. HE and HE alone took such a devastating experience as a childhood stroke and is turning it into something good. He's opening a 4 year old heart up to see the world and people the way they really should be seen. To treat people the same, no matter what. To have compassion....

The "special" teacher

Gracie graduated from Pre- K today. Wow, what an amazing accomplishment from the little girl who wasn't supposed to even leave the hospital in 2009. I was sitting here tonight, thinking of all that she has done and learned this year, and it brought tears to my eyes.

A year ago, Grace had her final PT/OT session with the girl who came to our house. Gracie absolutely loved her. She loved their play time. I remember one day they were trying to learn to use scissors, and Grace scared the living daylights out of everyone. Yesterday, her occupational therapist told me that scissors were pretty much "mastered." Mastery of a skill....alot of parents probably don't even notice things like using scissors. To us, it's huge. So, to all of the occupational therapists out there...thank you.

Last September, we went to parent teacher night at her school. Part of that included "open gym"- which meant that the physical therapy rooms were open. Grace fell about 500 times that night, and could not even keep herself upright on the therapy ball. Today, she bounces across the room on it like Tigger. So, to all of the physical therapists out there...thank you.

At the beginning of the school year, Grace still aspirated pretty regularly. She asked everyone, "What's your name?" Her h's were p's. Her name was Dace. Today, she very rarely ever chokes, much less aspirates. Our cat now hisses at her...and that sure does sound better than what she used to say. Her name is not only Grace, but it's G-R-A-C-E. Spelled out. So, to all of the speech therapists out there...thank you.

A year ago, Grace could not sit still for a minute. She couldn't remember anything past Twinkle, twinkle little star. She had a hard time fitting in with other kids, because she didn't understand like they did. She wouldn't sit still even for half of a story. She didn't know her ABC's, colors, numbers, animals, etc. Today, she knows and does all of these things.

A special education teacher is a very SPECIAL teacher indeed. Every day, that person CHOOSES to go to a classroom with kids that are "different". Some of them hit. Bite. Some are non verbal and that teacher can never be quite sure what they are getting...or not getting. Almost all of them have the energy of 24 "normal" kids. That teacher loves those kids though, loves that job, that CALLING- and does it day in and day out. And the kids learn. They are like sponges, and before long, parents like us are amazed at the things their children know. AND so, to all of the special education teachers out there...thank you. What you do is important. What you do matters, forever. What you do changes lives.

Happy pre-K graduation, girly-bug. We are so very proud of you!!

Neurology appointments, ASD, and kindergarten bus assignments....

This past week was busy!!! On Tuesday morning, Gracie woke up with a fever of 104.9. Of course, this also happened on the HOTTEST day of the year. Temperatures rose to 101 with a heat index of 108 (from what I heard). I am a self proclaimed sun worshipper. I love the heat. It's funny how things like seizure disorders can change a persons outlook on something. I still love the sun, but on those hot, hot, HOT days, we pretty much stay inside now. Back to the fever though....any temperature over 101 warrants a pediatrician visit with Grace. So, we went to see her doctor and came straight back. Her throat was bright red, but the rapid strep came out negative. Dr. Roessler was quite sure she had an enterovirus--- the only thing that worried him was the increased chance of seizure activity. We went home and Grace had her tylenol and fell asleep on the couch. Her fever came down a bit too quickly, because she seized in her sleep. It is so scary to watch a child seize. This time, we were able to wake her up within about a minute and she pulled herself out of it. She was very post-ictal for a about an hour or two, and then she started to perk up. A call to her neurologist left us needing to go to Wegmans to pick up an emergency drug for the duration of the illness. It's called Klonopin, and it's one drug that I hate the very idea of giving to her. There are tons of side effects from it...and it just doesn't sit right with me that people pay $5 a pill for the stuff. HOWEVER, sometimes the good has to outweigh the bad, and it did control those seizures. She had another seizure at Wegmans, but again, she pulled herself out of it without any rescue drugs. Thank God.

We already had a neurology check up scheduled for Friday, so we kept that appointment. While we were there, we discussed these seizures- but also other behaviors that we see. Her neurologist said that Grace is hyper focused on some areas- to the point that distracting her is not just hard, but might be literally impossible. There are things that just bother her so much that her brain gets stuck on them and just does a loopdeloop, right back to it. It's hard to explain in words. For example, she recently saw a cartoon with a child that had to go to the hospital. She will ask about that show at all hours of the day, almost as though she is just fixated on it. Some behaviors that the doctor saw herself and others that we described caused her to officially place Grace on the Autism spectrum. It's quite typical for kids with TBI's to show these symptoms, and while it puts her on the charts, it does not mean she is "autistic". These are behaviors that can get better or worse over time, and we just have to watch and wait! What does all this mean to us? Pretty much nothing, LOL. She's the same Grace we walked into that appointment with!!

That afternoon when we got home, I got the mail and in it I found this-



Oh boy, did the tears ever flow!!!

Kindergarten

I'm very happy to report that Gracie has been accepted into the special needs 12:1:1 kindergarten class!! This has been a HUGE concern and now a HUGE burden off of my shoulders. As I have previously blogged, I had always planned to homeschool. After the stroke, I knew I would end up having to send her to school for therapy. It broke my heart, absolutely broke it.. Then she not only showed tons of progress, but she just blossomed!! My girl adores school. As a matter of fact, short of a week break this week, she will attend ALL summer long!!

I started to get nervous about kindergarten back in February/March. The district we were living in has very minimal special needs programs. Although Gracie has done above and beyond what any doctor or teacher ever expected, she does still need special help and a careful eye. She still falls a lot, and she still loves to take off and just run when she gets bored. ADHD at it's bests? Nope just a stinking traumatic brain injury. We recently moved back into the district I went to school in ( all those years ago in the Ice Age, LOL)-- and luckily it is bigger and has more funding. We moved late though, and so the CPSE ( Chair person for Special Education) wasn't sure of she'd be able to get Gracie in to the 12:1:1. Which is what she needs--- the special attention on a small class, with an emphasis on continuing to get all of her therapy and learning to play well with others. Gracie still plays by herself more than with other kids. Recently, she has begun to sit near other kids while she plays, and that's a huge step in the right direction. She gravitates to younger children and babies though, or she just sits all by herself to play with something. No interaction with the other kids near her.

Anyway, I got a phone call this week to tell me she was accepted. I'm so excited for her to get the type of education that she needs....also a little sad to see her go off for 7 hours a day....

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!!