A Journey of Grace

There are moments in everyone's life that are never forgotten. August 28, 1996 is the very first moment of my life that I have never been able to forget. I was 16 years old, and it was exactly one week before the first day of my senior year of high school. That morning, I was having a very simple day surgery, to have an ovarian cyst removed. The doctor had assured me that it would be a simple procedure, that I would just have to rest for a few days. I would be able to start my last year of school just like everyone else. Even today, I close my eyes, and I am back on that stretcher, being wheeled away from my mom and dad and into the OR. The anesthesiologist is standing above me, telling me to count backward from 100. 100, 99, 98...and the next thing I remember I'm in a different room, with voices everywhere. I can hear my mom asking when I would wake up. I remember wanting to tell her that I WAS awake, but I couldn't seem to form the words. The next words I heard have been etched in my mind for the past 14 years. "The surgery went fine and we got the whole cyst. It was quite a large one. She should recover nicely...however, there is a lot of scar tissue on her ovaries and her uterus is tipped. Babies are not in her future." At 16 years old, I knew the finality of those words. My life's dream was always to be a mommy. Throughout the next 10 years, I had more problems, and many more procedures. Every time, the doctor would always make sure to tell me that my chances of ever bearing children were slim. A hysterectomy was discussed when I was 21 years old. The doctor said that I might as well get it over with then and stop having all of the health problems. His words? "You are never having kids anyway, Michelle. Get over that and get healthy."

The echo of those words haunted me for years. Well before I was ready to have children, I knew I never would. Well before I ever fell in love, I knew that when I did, I would have to break the news that I could not bear children. Then, I met the man who became my husband, and got pregnant RIGHT after we were married!! What a beautiful surprise it was to us. Not even a month later, that baby went on to Heaven. I can still hear the ultrasound technician's voice as she said "I'm really sorry, it looks like a blighted ovum." At that moment, every dream we had seemed to come crashing down around us. I just knew that all of those doctors had been correct over the years. That this pregnancy was just a fluke, and that my body didn't sustain it because it couldn't. I felt bad for myself. I was angry. I was angry at pregnant women, angry at God, angry at myself.

Then, just when I was at one of my lowest times in my Christian life, God gave us another beautiful surprise. It was just about 5 weeks after the miscarriage, and I was feeling lousy. I hadn't read my Bible or prayed for weeks. I was about as far away from God as I possibly could be, my heart was closed off. I thought He had turned His back on me, just when I needed Him most. John had a Friday off from work, and he told me we were just going to go out and have fun. We packed a picnic lunch and headed to a park that we like, about 15 miles away. We sat there on the swings and ate and talked. It was the first time that I let myself open up about how badly I was hurting over the miscarriage. After about three hours, we left the park to go out for ice cream. While we were sitting in the restaurant, I started to feel awful pains in my stomach. By the time we got home an hour later, the pain was absolutely unbearable. Figuring it was a kidney stone, John took me to the ER. After sitting there for what seemed like an eternity, the nurse came in and said she had to send me to ultrasound. We asked why, and she said that I did have a kidney stone, but that I also had a positive pregnancy test! The doctor was actually more concerned about the positive test than anything else, because it had been such a short time since the miscarriage. He was concerned about choriocarcinoma, a type of cancer that only happens during pregnancy. So we went off to ultrasound, hoping to see just a speck. And there it was...a beautiful, tiny yolk sac. A sign of life. I went home that night, with a real smile on my face for the first time in 5 weeks. John and I stayed up late in the night, excited for the pregnancy, but nervous as well. Would I sustain this pregnancy? Would the same thing happen again? We laughed and cried and prayed together. John opened the Bible to read. He was doing a study in Psalms and was on Psalm 82, but he opened to 113. I watched him scan the page and his eyes light up. I opened my Bible to the same Psalm and tried to figure out what he was seeing. Within moments, I knew. Psalm 113:9 says: " He maketh the barren woman to keep house, and to be a joyful mother of children. Praise ye the LORD." At that moment I knew how wrong I had been. God had never left me. He had been there with me, through my moments of anger, hopelessness, and despair. He had loved me when I had cried in anguish and he had loved me when I cursed His very name. At that moment I knew that we would be just fine. God gave me this verse to remind me of His power and love. No matter how the pregnancy turned out, He had already kept His promise. I would be a mother. I already was.

Are you going to sue???

There are two questions that I get asked more often than anything else. It's funny, people will ask me about Grace, how she's doing, what caused the stroke,etc. Then they'll cut me off right in the middle and say "I hope you're suing that hospital!". I don't usually even answer the question, but I figure I will answer it here. It IS expensive to care for a brain injured child, I will not even begin to deny that. We have to travel back and forth 2.5 hours at least once a month for appointments. Grace can't handle a whole day in the car, so we usually spend the night, depending on the length of the appointment. Grace can't control her neck muscles as well as she used to, so we had to invest in an expensive car seat for those trips. Day to day expenses add up as well. She was fully potty trained before the stroke, and is now regaining her muscle control. We've been buying Pull-Up's for the past 5 months now though. At $15 a pop, yeah that gets expensive. She goes through shoes like most people go through toilet paper. Originally, because she was crawling everywhere, and now because the braces wear them out well before their time. There are many other expenses, as well.

However, that being said, the answer is a big, fat NO. We will NOT be suing the hospital. I will be honest, the thought was entertained. We even contacted a lawyer who told us we had a solid case. This was all while Grace was still in the early stages of rehabilitation, and we didn't know the outcome. We STILL don't know the final outcome, but we know suing isn't the answer. Why? First of all, what would be gained? Money. We TRY to live our lives based upon Biblical principles, and that right there is enough to make us realize that it would be WRONG. "For the love of money is the root of all evil: which while some coveted after, they have erred from the faith, and pierced themselves through with many sorrows." I am not saying that anyone who has sued a hospital is wrong, but we know it would be wrong for us. Did the hospital do wrong? Yes. The nurse that was working that night definitely did not do all that she could have for Grace. She did not listen when we said there was something more going on. Is MONEY going to help that? No. All it would do is ruin a woman's life, and I am certain that she has thought long and hard about that night. I am CERTAIN that she has had the same nightmares that I still do, hearing Grace scream. I am ALSO CERTAIN that she would go back in an instant and listen to me. I am also CERTAIN that she truly thought that Grace had the flu, and that she was helping her by keeping her from the radiation of the CT scan. I am CERTAIN. Nurses are people, and they are the people that have done so much for me and my family that I could never repay it. Sometimes they are wrong...and at the end of the day, they live with mistakes they have made. I wish they didn't. They are JUST people.

If you have read this blog, you have gotten to watch and be a part of MIRACLES, as God worked them. To us, suing the hospital would be a SLAP IN THE FACE to our Wonderful Savior. "Well, God we begged for You to heal her, and You did. We begged for You to allow her to walk again, and You did. We asked that she could see again, and she does. But God, now we want money for our pain and suffering." PLEASE. "Not that I speak in respect of want: for I have learned, in whatsoever state I am, therewith to be content." "But my God shall supply all your need according to his riches in glory by Christ Jesus." We will not look God in the eye and tell Him that what He did for us wasn't enough. We will NOT.

As for the second question that I am often asked...will I write a book? A more positive answer for this one. Yes, I am starting to work on a manuscript for a book. It might take 20 years to complete though!!!

***Sorry if I seem preachy or whatever...we are just very adamant about this decision and why we have come to it.***

One of these kids is not like the others...

There are moments in every single day when I look at my beautiful little girl and realize just how different she is from 6 months ago. EVERY DAY. Yesterday, we went to a birthday party for one of her little friends, and it was chock full of those moments. She had a ton of fun, but it was very stressful for Mommy, lol!

We got there and there were a lot of people there. All people that she knows, but she usually sees them at church. She was SO excited to go to Olivia's party, she almost fell out of her car seat trying to get out of the car. After about 10 minutes though, I noticed her, standing by herself off to the side. She's not a loner...she was just hanging back and watching the action. I tried to engage her with the other kids, but realized really quickly that she thought she was playing with them. Just standing there, watching them play was enough for my girly-bug. The next thing I noticed was her table manners, or lack thereof. Now, it would be unfair for me to say that this is completely a stroke thing. Grace has always had a problem with grabbing before she asks. However, we were working through that before November and she was actually doing very well. I saw her put her hands on so many people's hot dogs I wanted to just cry. Thank God most of the kids didn't notice, and the older one was gracious ( love you Alura!). She also pretty much refuses to use utensils these days. I've been racking my brain, trying to figure out why. I watched her at the party yesterday, trying to stab a hot dog with a fork. She missed every time, then she finally got it and the plate fell on the floor. She's just learning to adapt, just like the rest of us are. So, I let her eat her cake with her hands. One of the older kids asked me why she eats with her hands...that was hard. I know this child, and I know he didn't mean to be hurtful. He's a child and he asked a question. It hurt my heart though, because it made me think of all the people who DON'T ask the question, and then judge her. Or me.

The real test was when all of the kids went outside, and she actually held her own. First of all, she opened up and had a lot more fun. I truly think that it was just a lot for her in a small area with a lot of people. These are things I never think of, but will have to start. I couldn't let her play the games, but she had fun ANYWAY, and that's what matter right? There was a man there, whom I don't know very well, but I could tell he had a heart for the underdog. He picked her right up and ran her through one of the balloon games. It made her day...and mine too.













On the way home, I asked her if she had fun. "Yesh. I had fun with Mommy and Oliva and Alura and AAAAriiiies (hmmm, think she likes that one, LOL), and with Cara and Cara's mom and my Mrs. Norton and where was Daniel? Where's Jessica? And outside with bike and lots of balloons. I love Olivia's happy birthday Mommy." One of those kids truly was NOT like the others...and I am so incredibly blessed that she's mine.

CPSE meeting.

So, before the trip to Rochester this week, I went to the CPSE meeting for Grace. CPSE is the preschool counsel for disabled kids in Horseheads, the committee that will be taking over her physical, occupational, and speech therapy. I'm VERY "happy" to report that she has qualified for everything. She will receive three sessions of each therapy per week, PLUS three 1 hour sessions with a preschool teacher to help her with learning and behavioral skills. I am praying that this will be exactly what she needs.

People have asked me how much the stroke has set her back quite often. She is such a happy, playful child, that sometimes it is hard to tell. Here are a few statistics that I can share with you.

These are percentages from a test that the therapists give her before she can qualify for services. As you can see, all of her scores dropped DRASTICALLY. ***Click on the chart to see it larger- it came out much smaller than I expected. ***


It's VERY hard to see these scores and to know that your child is this far behind. There were times in that meeting that I just wanted to cry. However, she IS doing well and she IS making gains every single day!! God has been SO incredible to us, and this time and these delays are just part of His plan for her. I can't wait to see how He plans to use this time in our lives. Maybe there's a therapist just waiting for someone to reach them?? One that could only be reached by a sweet three year old with great faith in Jesus?

Happy Birthday cake...for breakfast anyone?

Most mornings, we are rather busy. Between PT and OT, visiting nurses and doctors appointments--it's usually get up and go. Some days though, we have that little bit of extra time. On those morning, I like to ask Gracie what she would LIKE for breakfast. Sometimes, it's a little too out there, but usually it's within the realms of breakfast food. Today was one of those days. Gracie got up quite early after going to sleep quite early last night, and we were spending some good time together. I asked her what she wanted me to make her for breakfast and she answered "Umm. I just want to have some Happy birthday cake!!" with a big grin. Of course, I told her cake is a no go for morning...so she decided on "macioni and cheese". Poor kid. It sounded so good to her. So one more time, I asked her..."Happy Birthday cake,, Mommy!!" with an even bigger grin. I asked her who's birthday it was today ( we don't have any today), and she picked up her baby doll and said " Today is Faith's Happy Birthday party, Mom!!" So cute!! She finally decided on her breakfast, a highly nutritious one of Fruit Loops, and we went to her pediatrician for her hospital recheck. After that, we decided to enjoy this last day of nice weather. (Only in NY, will it be 78 degrees one day and a forecast of snow the next!!) We picked up my sister and James and headed to the park.

The trip to the park tired the kiddo's out, so while they napped, I went to the grocery store. My mind kept going back to Gracie saying it was Faith's happy birthday. I ended up buying the stuff to make a cake. I got home and made dinner and the cake. After dinner was over, I sent the kids outside with my niece and nephew, and I got the party ready.

This is Emily and Faith. Emily has been with the family now for 3 years!! Faith is actually only a few months old, but we like to celebrate around here!

Gracie, holding Faith when she came in the room. She was so excited that we were having a birthday party for her!! It was so sweet!

The cake. Josiah was just excited to eat. ( See the babies that we invited to the party?)

Such a good Mommy!!

And of course...two pieces of cake made for a hyper Gracie!!

Such good memories!! What fun!

Rochester

So, we've had a pretty busy few days. On Sunday evening, Josiah came down with a nice 103 fever. A little Tylenol and he was happy enough to go sit in church with me. By Monday morning, he was acting very sick. Poor baby...so I took him to the pediatrician. He said that it was just a virus and it should run its course. Unfortunately, it was also contagious. On Tuesday, Grace acted fine all day. A little more tired than normal, but otherwise fine. Then she laid down for her afternoon nap, and woke up lethargic and with a 103 fever. I called her pediatrician, just for reassurance that this was the same virus. He wasn't in, but the nurses wanted to see her. So, we went in. The next thing I knew we were on the way to Arnot, being admitted for a CT scan. I was fine with that...but then we got to Arnot and the next thing I knew, I found out we were being transferred to Strong. Just for the record, that kind of news shouldn't just be dropped on a mom who's child has been through what Grace has. I was staring directly at my girl, who was upset and scared (and sick) but otherwise OK. I was flipping out, wondering what in the world was going on that I didn't see! It turns out that the pediatrician on call had contacted Gracie's neurosurgeon and her neurologist and had decided that the best place for her was Rochester. See, Elmira doesn't have a pediatric neurosurgeon, and the fear was that her shunt would need to be tapped in order to rule out a shunt infection. So, we had the CT at Arnot and she got an IV and blood drawn. Before we knew it, an ambulance was there and I was driving 85-90 MPH, trying to keep up. When we got there, she was in her room and acting pretty good. I found out that her CT had come back looking good, but that her infection markers in her blood work were high. At that point, it was a wait and see game. So, we got her in bed (it was about 11pm) and tried to get her to go to sleep. At about 1am, our door swung open and two men came in to CLEAN the room. AT 1 am!!! Ugh. I really though we must have been getting a room mate, but nobody ever came. They cleaned that room for over an hour, and THREW away Gracie's potty seat! I woke up the next morning and went to put her on the potty, and it was GONE. Hmmm. Oh well. We now have a pretty pink princess potty seat.
Wednesday morning the doctors came in and said they wanted to do an X ray shunt series and a chest X ray. She is so scared of the X ray, and it's even worse at Strong. They wheel you down to the basement, and into the OR prep room. So there are all these people, intubated and knocked out all around us. Then the X ray technician comes in and gets us...the hard part is that I have to be the one to hold her down. I can't imagine, being three years old and having this big machine come at me, as the person I trust most in the world, HOLDS ME DOWN. It's always a traumatic experience, for both of us. We got through it though, and back upstairs we went. Those tests came back fine as well, and later the blood work from the morning came back. Her infection markers were back down within the normal range. So, we came home on Thursday morning,, still unsure what was going on. She still doesn't feel 100%, but she's better.

My sicky girl on Wednesday after her shunt series.

Starting to feel a bit better!! With Amanda, my niece.

Playing the star tambourine at the music hour, right before we went home.

1...2...3...

So Gracie is sitting in the living room, playing with her flash cards right now. She just sang 1...2...3 Jesus Loves me. 3 and 4... He doesn't need me to wear this patch anymore. Oh I am cracking up! She often makes up her own words to songs, but she doesn't usually rhyme!! These patches are the very bane of her existence! She does well with them sometimes, but today the stupid thing just won't stay on. She has 2 patches and a band aid holding it on, and it's still falling off. I'm cheap though. We paid $20 for these things and we wanted to use them. I'm coming to the realization though that it's better to spend a few more dollars and get the ones that will stay on. It sure will be worth it if it keeps her from having eye surgery. Can I ask you all to pray about that, by the way? She doesn't go back to the ophthalmologist until July, so we are hopeful to see a TON of progress by then! Here she is wearing her "puppy dog"patch. This was a few weeks ago, after her concussion. Notice the nice yellow in between her eyes? Doesn't she look cute with the patch on though?

This Tuesday, I have to go to her CPSE meeting. She has been getting PT and OT, twice a week since she came home. The therapists usually work with elderly stroke patients though. CPSE is through the school district and work with kids. I am PRAYING, PRAYING, PRAYING that they will take her on!! She NEEDS to have Speech Therapy. She hasn't had it since she left St. Mary's. Her speech itself is going well, but she ASPIRATED and that wouldn't have happened if she had been having ST right along.

And now, for my lesson of the day: did you know that original meaning of our English word God is "the Good one"? How perfect. He IS Good!

Resurrection Sunday!

First of all, it sure was a nice change to spend a holiday at home!! Gracie had a great Easter Sunday. We dyed our eggs the night before... and I got NO pictures. Bad mommy. She had a lot of fun though. We would drop an egg in the colored water and she'd hold her breath a little until we'd pull it back out. Then she's see whatever color it had turned and she'd say "WOW!" or "Ooooohhh". It was very cute.

Easter morning came and she woke me up, saying "Hey mom, Jesus day." (Usually I'm always up before my kids, but she was up at like 5 am!!) She hopped into our bed and went back to sleep for an hour,, and then it was time to make our Resurrection rolls. She had fun making them...I kept telling her that we had to seal them up tight like Jesus' tomb was. She'd ask-"Jesus die, mom?" I'd start to answer her, and she'd yell "Uh uh, He's alive!" I have no clue where she learned that one, but it
made my YEAR!!
She was a bit concerned about the disappearance of the marshmallows, but her Easter gifts helped out. Her favorite gift was by far her new Bible. We decided that it's time for a big girl Bible for her. She just LOVES it. I'm so thankful that she's already showing a love for God's Word.



Soon, it was time to head to church---but not without a few pictures of my two cuties!!
All in all, a great day!! Love to all, and Happy Easter!

Easter cookies...

So, we made and decorated Easter cookies tonight. Such fun!! I couldn't get many good pictures because I had frosting all over my fingers, but I had to take a few!

It all started so innocently. A cute little girl and a butter knife full of icing...



Soon, the tide began to shift...

Before long we were lost in a sea of frosting!!



and she was loving it!

Oh how I love that smile!!