Amazed...completely.

Again, I am embarrassed and apologize to any of you who continue to check in on our family. The lack of blog action doesn't reflect the activity level of our family, that's for sure!! We have been having a blast this summer...lots of baseball, soccer, running, swimming, pitchers upon pitchers of iced tea and lemonade! Along with the carefreeness of summer, we have been carrying quite a burden concerning Gracie's health and upcoming surgery.

If you have been here awhile you know the severity of Gracie's heart condition. Well, we are at the crossing point right now as we near what has been given us an estimated life expectancy for our sweet little girl. That is...without a procedure called the Fontan. In March of 2010, Gracie was scheduled for an extremely high risk procedure. At her pre-op appointments the day before the scheduled surgery, I was told it would not be done. We were devastated. All along, this was the procedure to give her some years--who knows what could happen if Gracie were given several years? Even 15? What advances would be made in that time? Instead, we went home knowing that the Mayo Clinic was reconsidering the plan for Gracie's life--a short term, rather than a long-term plan. Crushed.

Again, last winter, as Gracie became bluer and bluer and her activity level decreased, the Fontan was talked about. Again in March, we received the news that it was too high risk. Instead she was to have a shunt replaced, which would eventually wear out her one ventricle and she would have a short life.

With every procedure, every surgery, we have had peace. Even with the poor odds, even with the seriousness of the situation, we have had peace that she was right where she should be, we were putting one foot in front of the other, all the while praying for God to give us wisdom and to just follow His lead. This time...we have had no peace. I'm a searcher, a researcher when it comes to my children. I have spent hundreds of hours reading medical journals that way beyond my grasp--I'm really not that smart! Yet, I'm learning all I can about statistics, surgeries, treatments. Curtis, who is much, much more intelligent than I am doesn't work that way. He is so logical, yet the news is always so devastating that he has shared with me that his answer is not in journals, statistics, and all of that, but rather in prayer and Scripture. Perhaps it's because I happen to be the one who is at the hospital with Gracie, brings her to appointments, meets the other families who have sick kids. He is DAD. We cope in different ways, I guess. I think it makes us a great team!! Regardless, we have had no peace about this upcoming surgery.

Michigan. We have had no ties to Michigan whatsoever. I knew about Boston and CHOP--awesome heart facilities for children, but Michigan? In the past couple of months, several people had asked me "Have you thought of Michigan?", "I know__________, who was treated for a serious heart condition at Michigan", my mom sent me a newspaper article about a little girl with heterotaxy who was doing well after a few surgeries in Michigan. I began to look up University of Michigan and CSMott--ranked #3 in the US for pediatric hearts, specializing in Hypoplastic right and left hearts--Gracie has that with her heterotaxy. We prayed. The answer--Michigan. When we went for Gracie's cardiology appointment in June, I asked her cardiologist to send Gracie's records to Michigan. He did. He also told me that likely the answer would be the same.

Today I grabbed the mail as soon as we arrived home from a fun weekend of soccer. A letter from Michigan and it was small and skinny. That is never good news, is it? At first I opened it up and really couldn't understand what I was reading. Then..."Quite honestly, from my review of the data, I would not feel that a Fontan procedure would carry an unusually high risk." and "I would think a fenestrated Fontan would be a better choice." Woohoo!!

So what does this mean? First of all, we really want to keep Gracie at Mayo--perhaps the doctors will reconsider and perform the Fontan procedure. If not, we will schedule an appointment as soon as possible in Ann Arbor, Michigan. If Gracie's insurance isn't accepted at UofM, we will need to find somewhere that she can have this surgery that could perhaps give her a much longer life.

God speaks. He speaks mainly through His Word, but He also speaks into our hearts where we are to turn next. As stressful as these past months have been for us, He has given us this comfort that we just follow His lead. Sometimes, I believe, he places people and circumstances right into our paths--sometimes we call this coincidence. I believe they are God incidents instead. Divine appointment, so to speak. We rejoice with this awesome news today, not only the words from this letter that are so positive and hopeful, but mostly we rejoice that He continues to provide a way, He continues to lead me and guide me, He continues to reign here on earth and give doctors wisdom and children hope.

I'm amazed, simply amazed!

Gayle

ups and downs--the rollercoaster continues

I'm thinking we need to come up with a name for this roller-coaster we have been on for the past 41/2 years--any ideas??

It's been awhile since I've written because, to be perfectly honest, I'm at a point in which I'm not sure what is important to share and also if I even understand fully what is going on.

I'll start with Gracie. She had a pretty tough recovery after that whole tooth episode--wowzer, that was a rough one for her! All winter long she was sick with something it seemed. She had lots of colds and flu bugs--only one hospitalization, but sort of scary nonetheless. She has started developing some pretty major headaches. With these headaches, she shows stroke-like symptoms. The first one happened clear back in September, then another one in December, which put her in the hospital, then she had one a few weeks ago. She has been seeing a fabulous neurologist at the Mayo Clinic who has been trying to figure out what exactly this is all about. She has these symptoms, then all of a sudden, she's fine. Completely fine. In December they did a pretty detailed MRI which lasted several hours. At the time, they told me she had little spots on her brains--one doc even called them tiny tumors. They were located in the very center of her brain, which amazingly isn't all that useful. They deemed the cause her stay on ECMO. The neurologist explained to me that very few children had survived a 10 day stay on ECMO until the past 10 years or so. They are finding these spots on the brains of nearly all of the children who have an MRI. Gracie is quite blessed! Many children have these "spots" in areas of the brain which have a lot more function and also have much larger "spots". The neurologist is completely amazed at Gracie's abilities, her sense of humor, her awareness, her speech, her creativity--the whole package. They also saw a larger "spot" on her brain, which they called a "silent stroke". Perhaps she had a slight stroke with one of these headaches, maybe it was even before she was getting the headaches--who knows? She really has no repercussions other than a lack of reflexes in one of her feet. Not a big deal at all--she, nor anyone else, would ever even notice. She continues to be at "high-risk" for a stroke.

Gracie's blood counts have been pretty stable, although we have noticed throughout the winter a definite decrease in her energy. She can barely make it to the top of the steps before she lies down or asks to be carried. She turns very blue with every activity. God made the body so fantastically, however, because it tells her to stop. She spends a lot of time coloring, drawing, watching TV, playing video games--to a teen PERFECT! She, however likes to run and jump and play--her body only will let her do those things for a very short time. She had a cardiology appointment a month ago and the doctors are figuring out a surgical plan for her. It appears she has two options--one very high risk with a possibility of a longer life, the other very low risk with the reality that her ventricle will shut down in a few years and her options will be run out. The doctors mentioned a surgery date in June, but we are hoping to wait until September--it looks like it won't really make much difference. Right now, it is out of our hands. Gracie has beat many odds and we know that we know that we know her days are numbered as are ours. God will take her home when her purpose has been fulfilled--that's just how He works. We are hoping and praying that time is a long time away although we know His plan is perfect and paradise awaits her. It's simply not our call. That is so freeing to us as we are in positions of making life or death decisions. The Prince of Peace has this all figured out--we are just putting one foot in front of the other and enjoying each day we have with her and our other kids.

Gracie's personality is fantastic!! She is so stinkin' funny. All. The. Time. Some of the stuff she comes up with just blows our minds, so very creative. And super cute, and squeezable, and the life of the party! I truly can't imagine this world without her...I simply cannot picture it. I'm so glad God worked it out so we just experience the here and now. We don't need to know what lies ahead--just the choices we are making today...today I choose LOVE.

How's that for a segway into Selah's life? Selah had been having a pretty decent winter until the past couple of weeks. Once again, we are seeing some pretty disturbing behaviors with her--it's as if she completely shuts down in front of people, then goes off and destroys while she is alone. We cannot leave her alone for any period of time or we have a disaster on our hands. I just can't figure it out. What we are learning through all of this is our responses have to mirror Jesus's. We fail miserably most of the time, yet always grab perspective and move forward. We are at a "moving forward" time right now. Yesterday I asked her if she thought she was a good girl or a bad girl. She said, "bad girl", so we made a chart. Yep, I'm a "retired" teacher. We went through her days and found out she is bad just a few minutes each day, so really she's very good the rest of the day--this also fits into the time unit she's in at school by the way! It's just those bad minutes are REALLY BAD...I mean REALLY BAD. We also drew pictures of our family and how we all fit into it so well. The reason is we are attached because we love each other. She loves when we are on vacation, when she is eating ice cream, when the sun is out. Otherwise she only likes us a little bit. What a tough concept for a child to grasp when she spent the large majority of her life completely unloved! We can talk and talk and talk, but until she FEELS love, I'm afraid her responses are not going to change. So often, she likely doesn't feel love because of the consequences to her behaviors, even the reactions from us and our other kids. We are, once again, making a point to hug her more, to tell her she's beautiful more, to just play with her more. The behaviors cannot be overlooked because they are not even safe, so we do have to deal with these. I have read so much, studied so much--I know what to do, yet it's so hard to always be kind and loving to a child who is constantly destroying. Our responses are always a choice. We can choose to be kind and loving or we can choose to just coexist. Sometimes I need to step away for a bit and gain a little perspective. I hate it that my mood STILL affects my responses. Less and less, but it still does!

We had a terrific vacation to Florida over spring break. We did a LOT of sitting by the pool and just relaxing with our family. We did venture out to Universal Studios a few times late afternoon and evenings, which was also fabulous. I'm not sure why we still live in the frozen tundra--perhaps it's because I would get nothing done if I lived in a nice climate. It's 58 degrees out now and I'm sitting outside with my laptop--I cannot let a nice day be wasted inside. And yes, Floridians...58 degrees is a nice day for Iowa in April!!

Thanks for checking in!!

Love,

Gayle

much better

Gracie is doing SO MUCH BETTER!! Thanks for praying for her! I did use some bribery to get her to eat yesterday--she was so afraid of putting anything in her mouth and just wouldn't open it! I told her we will go and pick out a toy if she just tried something. I walked into the kitchen with her on the floor with the turkey, cheese, and bread spread out so she could put together a sandwich...yeah, ON THE FLOOR! Anyways, she tried and finished it--she was so hungry! We then went out and purchased a fabulous new carseat for her babies and gorilla she has named Gracie. She then wanted to show her daddy that she could eat, so we met him for lunch and she ate, and ate, and ate.

By last night's basketball game, which was awesome by the way, she was showing everyone her new sparkly, princess smile--precious. Even people who really wouldn't care--they were included in the open mouth view right in their faces.

All this to say--Gracie is back, she's confident, happy, feeling good, and ready to take on the world!

Gayle

Quite a week!!

First of all, thank you for praying for Gracie--she needs those prayers. This little girl has had so many surgeries, procedures, and tests and has really taken everything in stride. Until now. These teeth are making her so sad--she almost seems depressed. She keeps looking in the mirror and crying. She won't open her mouth or smile--she even told me that she just wants to be a little kid. I think she is starting to realize that she is different from other kids, asking why she has all of the scars and now silver or missing teeth--it breaks my heart.

We did get stranded in Iowa City--if you are from around here, you probably know how treacherous the roads were from Monday through Wednesday. My dear aunt Mari went to be with Jesus on Saturday and the funeral was on Thursday in South Dakota--everything inside of me wanted to be there...and I made it! Curtis stayed home with Gracie on Thursday and I made a super quick trip west.

Mari's life was too short in our eyes, but we know she is now with Jesus with no more cancer, no more suffering. It's just so hard to say "good-bye for now" to those we love. And my sweet cousins...how my heart aches for them. She did leave them with so much--she raised them with character, gave them countless memories, and a foundation that completely has prepared them for this world...and more importantly, the next.

Today, Gracie and I are finally hanging at home--we are having a Veggie-Tales marathon and hopefully baking cookies. I hope that will give her the gumption to eat something.

I do struggle with her being sad, with her having pain. This is just something that I have not witnessed in my other children as 4 year-olds. She just has to go through so much some days--it doesn't seem fair at all. She is so stinkin' sweet...my heart has been breaking for her this week. I know this had to be done for future heart procedures and surgeries--it's her only option. It just all seems so extreme--I realize they did EVERYTHING to protect her heart by crowning all her teeth--she has very little left to even present an infection or cavity...and she will get used to it--she will see herself as beautiful again--I know this. God created her perfectly...I tell her this at least 100 times each day...she also hears it from her daddy and brothers and sisters constantly. She will know too...soon.

This post is all over the place--I apologize--but this momma's emotions are all over the place too! Welcome to my world!

Have a terrific day--I'll post a picture when I can get a smile out of this little sweetie. You will see--Gracie is even more beautiful with shiny teeth!!

Gayle

her pearly whites

Gracie is having quite the extensive dental surgery today. They are crowning and root canaling (probably not a word) all of her teeth right now. Her teeth carry a high risk of infection and needed to be taken care of before her heart can be operated on again. Since the Mayo Clinic does not have pediatric dentistry, we are at the University of Iowa Hospitals in Iowa City.

Gracie is quite the patient--she has everything figured out, tells the nurses exactly where she wants her blood pressure taken and which little finger should hold the pulse oxymeter. She did tell them they could do anything today, but give her pokes and if they do give her a poke, they are only allowed one! No tears, no crying, just complete sweetness--she is amazing!

Since they haven't worked with Gracie before, I did get to hear how involved her heart disease is. The anesthesiologist pulled up a chair and explained all of the risks--any time Gracie has anesthesia, it carries a significant risk. Today's surgery is expected to be quite long--the longer on anesthesia, the higher risk it carries. So...pray for Gracie, that her body can tolerate the meds, that she will have adequate oxygen throughout the procedure, and that her airways will not be blocked in any way. They will ventilate through the nose since they are working in her mouth--this will be new for her.

I am using a public computer, so I should let someone else on. I will update as I hear anything!

Thanks for praying for Gracie!!

Love,
Gayle

Two birthdays, Christmas, and a very happy New Year!!

We woke up in the hospital on Gracie's 4th birthday to be told that we would be there for awhile. The tears flowed! I knew she didn't need to be there, but they were awaiting the results of her blood work. Gracie's amazing, kind, compassionate cardiologist stopped by for a visit--I asked him if we could go home. He answered with the three letter word I wanted to hear--"yes". After visiting with the doctor on the pediatric floor and throwing out his name a bit, we were released in time to make it home when the kids arrived from school. All of the Opps were thrilled...especially a newly turned 4 year-old!! The hospital so kindly celebrated Gracie's birthday with her in style--cupcakes, gifts, balloons--super, super sweet. The celebration when this little sweetheart was home however--A VERY BIG DEAL!! Gracie wanted to drive the little cars at the hospital so very badly, but was on strict isolation and couldn't leave her room. I called Curtis to get her a car for her birthday, thinking a little cozy coupe, he picked out a battery operated convertible--truly appropriate for a princess of this magnitude!!

Soon it was Christmas...

Gracie continues to battle whatever bug she has. She is still getting headaches and has quite a cough. Just not herself. The way this child lives her life is inspiring, that's for sure. At 4 years old, she can teach most of us a lot about life. She has been dealt a tough hand according to this world--lots and lots of pokes, she can't play outside, she can't play with other children this time of year, she tires easily and can't do normal things other children can do. Yet, she always has a smile on her face, she has a determination to live life well, enjoying everything. Her world is very, very small--yet she makes it so big!! I just wish everyone could know this little being--she's truly amazing!!

Our Christmas was fabulous--this past week of spending long, restful days with the ones I love most is time treasured. Many days, we haven't even gotten out of our pjs. I think Selah has worn her jammy pants from gramma every day since Christmas. They have been washed in between, but right back on her they go! A couple of days, she had them on over her other clothes!

2010 has been a terrific year for our family. Today I have been making a digital family photo book and have been taken down memory lane. Our Make-A-Wish trip, the cancelled surgery, a huge summer road trip, a graduation, a scary car accident, a hospital stay, , sending a child to college, some fun sporting events...yet what we treasure most are these quiet days at home with all seven of us curled around the fire watching movies, playing games, laughing about the latest antics of a particular 4 year-old--life is good! What is 2011 going to bring? How thankful I am that I don't even know!! Life is full of surprises, of twists and turns. It's not always how I would write my own story, I could never be this creative...but what an adventure God has given us. I rejoice in the fact that His story is the best one ever written and how thankful I am that I get to play a small part in it!

Resolutions? None. This family will just continue to seek out the Lord's plan for our lives and live accordingly!

Happy New Year, friends!!

Gayle

The last day of being 3!

Gracie is out of her MRI and did very well with anesthesia. We have not heard the results yet--Curtis was just talking about the fabulous LIFE performance at church when one of the groups sang a song to Philipians 4:6-7--Do not be anxious about anything, but in everything, with prayer and petition, with thanksgiving, present your requests to God. And the peace that passes all understanding will guard your hearts and minds in Christ Jesus. I can't really say we are anxious--we quite obviously don't want Gracie to have any brain issues--her little body is already enduring so much. I don't believe that means we are anxious. We are actually having a nice time snuggling with our daughter today. Right now Curtis and Gracie are making pla-doh cookies, watching Cat in the Hat, and eating ice cream--doesn't sound so bad, does it? She is feeling much, much better--her fever is gone, she still has that rotten ole headache, and is walking, talking, and acting pretty normal. No matter what is going on in her brain, it doesn't seem to be affecting her motor skills or cognative abilities. Now anyways.

We should hear some results soon. They also tested her for RSV and influenza, and a variety of bacterial stuff. She, of course, has everyone wrapped around her finger! The doctors and nurses LOVE her...she's quite famous around this neck of the woods.

We did just get some visitors--our friend, Betty, from church is a couple of floors above us and is reported to be doing much better. Her husband, Dave, and Bill and Aimee, stopped in for a chat. It was so good to see some friends!

We will not be coming home today, but there is hope for tomorrow. We will await the results of the tests and if things look good, we could be on our way to celebrate Gracie's 4th birthday at home! Curtis and I realized she has either been in the hospital or just a day home for every birthday--what's up with that??

I will let you know when I hear anything and if there are any plans to follow! Thank you so much for praying for our family. We are blessed!

Love,
Gayle

back in the hospital

I only have a couple of minutes, but want to share that Gracie has been admitted to the hospital in Rochester. She had an appointment with her rheumatologist yesterday afternoon--while there she spiked a fever and had a horrific headache. He sent us to the emergency room. After several hours of tests and various doctors, it was decided to keep her for observation and testing. The headaches are quiet concerning. In September, she had a headache that sent us to the ER as well. At that time, she was demonstrating some stroke-like symptoms. Her cardiologist referred us on to neurology, who decided to look into further if it happened again. Well, yesterday was the day! How God knew we needed to be at this facility!!

She really gave me a great scare yesterday--she was completely out of it for hours, many hours. Then she started vomiting blood. Why, oh why, does she need so many struggles?

She is having an MRI right now. Why doesn't it get any easier to watch your child be put to sleep? I hate that part of any surgery...big or small. I know she's in good hands, but to relinquish that control and leave the room is always tough. Don't they know I could help??

Concerns are this...stroke, meningitis, an infection, or an abcess. She has had headaches off and on for over a week--I probably should have brought her in earlier, but when nothing was done last time, I guess I just blew it off a bit.

Tomorrow is Gracie's 4th birthday--we are so hoping we can all be home! A terrific birthday present would be for this head "stuff" to just be nothing!

I better run...I'll try to update later!

Thanks for your prayers for sweet Gracie!

Gayle

a change of heart

I've been learning lots about my heart...and how unlike Christ it actually is. The lessons I continue to learn through this gift God has given me called adoption completely blow my mind! A month ago I had a commitment to share my story with a group of adoptive parents, some already have their children home with them and some are in the midst of the process. Anyways, I was super excited about this...until the day arrived. As I spent four hours in the car driving to the location, God began to prepare my heart. I talked outloud with Him because I was alone (imagine that)...at times smiling, at times getting a little loud, but most of the drive I was talking through tears to the One who always listens, who always stays true to His promise--the One I adore, the One I seek, the One in whom I placed my trust and my life. I thought, in my own wisdom that I would talk about Ephesians 1...God adopting us into His family and the parallels that earthly adoption would align with. Don't get me wrong, there are some nice parallels--God chose me, we chose Selah. I was broken and in need of saving. Selah was broken and in need of saving. God loves me so much that He forgives my sinfulness and and sees the beauty, rather than the ugliness that so often is my mirrored image.

That's where the difference lies--right there! I thought I loved well. I loved my other children well--those that were born to me, sweet Gracie who came to me without sin...as a tiny infant, helpless and not tainted by the world. But Selah...I love Selah...when she conforms to my desires, when her behaviors are appropriate and kind, when I am feeling patient and kindhearted, when I get enough sleep. Seriously? My love has been so conditional--it's completely humiliating to admit, but until I was able to admit this to myself and to God, I was stuck. I can make a list of all the reasons that I was entitled to these feelings, but in reality I have absolutely no business even making an excuse for my attitude.

God amazes me! Completely amazes me! It's times like this that convince me more and more that He is so present with me--only He can change my heart. Others can speak to me, can give advice, can help, but only God can change a heart. Many, many times it's through the voices of His people that we are changed, but the credit is always His. It's in those quiet, seemingly dark times that so often we are overcome with His light. That day, in my car...a change began. He has given me a new love for my daughter. Am I still frustrated? To be perfectly honest, I haven't been since that day. Have the behaviors changed? Maybe a bit--that's not the point--they will. It's my perspective that has. I am called to love as He loves and that is without condition. Love can not depend on circumstance or it is not love at all.

Selah is a delight, she is created by God in His image. She, like me, needs a Savior because we all have sinned and fallen short of the glory of God (Romans 3:23). It's so much fun listening to hear recite all of her Bible verses--she knows quite a few and they are so meaningful to her. I asked her what her favorite verse was for our Christmas card and she replied "Joshua 1:5--I will never leave you nor forsake you." She has lived 8 years of life left and forsaken--she is no longer. My eyes are all wet just thinking of the magnitude of that answer. All she wants, all she desires is to know that she is not going to be left or forsaken. Whether she understands the love of God or not, she needs to know that love from her parents first and we pray she sees Christ through us fullfilling that promise to her.

The rest of the Opps are doing well. Derek recovered well from his accident--thank you so much for praying for him and for all the kind words. Gracie is doing OK--her blood counts are going in the wrong direction and she needs to have some pretty major oral surgery in the next few weeks. Connor is busy with basketball and Breuklyn is swimming. We celebrated Selah's birthday on Sunday--what a fun day we had! And tomorrow is the big event--Selah and Gracie are both having their first birthday parties ever with friends!! We will be constructing gingerbread houses with 20 kids--should make for some fun photo opps! I will try to update this more often--actually I don't even know if anyone is still checking in. No matter, I love having a journal for my kids!

Have a terrific night!

Love,

Gayle

the dreaded phone call

Late Friday night...actually, really early Saturday morning, around 1:30 am, we received the phone call that parents dread coming from their teenagers. "Dad, I had an accident and there's blood all over". Phone died. Frantically, we rushed out the door, cell phones in hand, I called 911, Curtis tried to reach Derek again and again--finally he did and sort of had a location. We knew he was within 15 minutes of home, but didn't know where. We started driving, Derek called again and said he would try to walk to the road. At this point, we thought he went into the ditch somewhere. Finally, we connected with him and found him on the side of the road. He had fallen asleep and drove into a large ravine. My heart sunk. We could barely see the car from the road, it was that far away and Derek was a bloody mess, his face nearly unrecognizable because of the blood. We brought him to the emergency room.

It was obvious he had a broken nose. Other than that, we awaited some tests. They came back with multiple fractures to the face. Our hospital is so small, they decided to send him to the Mayo Clinic by ambulance. Another journey to the hospital--this time not for Gracie either. We spent several hours there in the trauma room W-3, they looked at him from head to toe. He did sustain multiple fractures to the face--at least 8 from what this non-doctor could read on the report. Both eye orbits are fractures at the bottom, his nose is broken in several places, his cheekbone, and four bones of his jaw. Most of the facial bones will just heal on their own, but the nose and jaw will require surgery in a couple of weeks when the swelling subsides. Overall, he is fortunate, completely fortunate. According to our hospital and Mayo, many, many professionals have told us how lucky he is. We don't believe in luck, rather in a mighty God who somehow cushioned his ride.

Yesterday was to be a tough day for him. He felt pretty well actually. His face doesn't look like the sweet Derek that it did on Friday night when he left our home, but it will. He spent yesterday with many friends...some right here in Charles City...and his new friends at his new home at Dordt, all of them with Derek by phone, email, prayers. The support system we have here is just amazing! Not only Derek's, but our entire family's. I tell my kids all the time, if you have one true friend, you are blessed. We feel so abundantly blessed by our friendships we have--our kids were all taken care of, dinner on our table when we arrived home, prayers be offered up on our behalf, rides, phone calls, emails...amazing!

I keep thinking of the verse in James that tells us to consider it pure joy when we face trials of many kinds, because you know that the testing of your faith develops perseverence. Perseverence must finish its work so that you may be mature and complete, not lacking in anything. To witness our 18 year-old's attitude of joy despite the trial--I'm amazed. He has not had a pity party for himself at all, but is not going to waste this lesson. We believe with everything inside of us that God has a plan for Derek's life. He is supposed to be here to accomplish something for HIM. Trials develop perseverence, which develops maturity...how I love to see these words for my son.

Throughout the unknowns of Friday night and Saturday morning, we all carried that peace that passes all understanding--we feel so blessed by that gift that can only come from the One who created Derek, the One who created us for a purpose. His power is so magnificent He calms the seas, He placed the stars in the sky, He commands all over all--He also had His hand on a little red Taurus with one of our greatest treasures in it--we give Him the praise and the glory. And the scars Derek may have, the pain he is carrying, it is not wasted, it is not in vain...but rather a reminder of what He has done in Derek's life.

This Monday, I am so thankful for my son. I'm also so thankful for the reminder of Who is in charge and freedom that goes along with that. And the joy...oh the JOY!!

Have a terrific day!
Gayle

Holly!!

I have been trying to post a comment on your blog, but it isn't letting me for some reason! I so want you to know that my family is praying for yours!! Please email me sometime at glopp@myclearwave.net. This is the only way I know how to get ahold of you :)!!

Your family is amazing--sweet Sarah is such a little trooper with the perfect parents God hand-chose!!

Love,
Gayle

Gracie update

I have been rather vague about what is going on in Gracie's life because, to be perfectly honest, noone really knows! That is...noone here on this earth knows! We take great confidence in Psalm 139 knowing that the One who made her, who created her inmost beings...He knows! He knows each fiber of her being, He knows her days---not only the number of them, but what they are filled with. Right now, today...this day...is filled with laughter, with Charlie Brown, with making eggs, with filling the bellies of our local ducks...today is a good day.

These past months, however, have had some very interesting, painful days for Gracie. She is battling through some severe leg pain, now some arm pain, and also has had an episode which initially appeared to be a stroke. We are still awaiting answers for what is taking over her little body, but in the meantime...we are enjoying today. When I say she is battling intense pain, that is true, but it is not all the time. She may go days with none that she complains of anyways, then have a day where she cannot function at all. When her legs hurt, she cannot walk...she just sobs. In the past two days, her left arm is also hurting.

We seriously see God's hand ALL THE TIME in her life. He has continued to bless our family with the best caregivers and doctors, here in Charles City and at the Mayo Clinic. The doctor that is overseeing these new symptoms is seriously one of the kindest people I have ever met. He so wants answers and he so wants the answers to be treatable and fixable. It is so puzzling to him as he rules out one thing after another. We spent a considerable amount of time with him last week. All involved do not think this is directly related to her heart disease. At this point, he is thinking she may have an issue with her bone marrow. Obviously, our minds race to leukemia...as does his. The good thing--the simple bloodwork they took is not showing anything too out of whack, but 20% of the time, it is not a red flag. The next step for Gracie is to meet with an orthopedist, just to make sure they are like-minded when pursuing this next avenue of diagnosis.

Our family has amazing peace. In my heart, I do not think she has leukemia. She has something...that I know. Throughout these last four years, Gracie has had many, many issues. Her heart is not good. Yet, she has never had pain until these last months--at her young age, she should not be in pain. As her mom, this is what breaks my heart. I know God made her perfectly...heart and all. I just plead for Him to take away her pain...that is the part I do not understand. I know we live in a broken world with sin and pain and heartache--but, a child in pain is too much to bear.

The silver lining--most of the time...she feels just fine. She runs and plays and gets into mischief. There are times I'm pulling my own hair out because she is so incredibly normal...naughty!! She is taking dance with my dear friend, she just went to her first princess birthday party, she loves, loves, LOVES feeding the duck and going down the biggest slides at the park. Her life is so full! Her spirit is so free and amazing! She's doing things I never dreamed she's be doing...talking up a storm, telling stories, joking around, enjoying life. I, in no way, want this post to sound negative...it's just real life. And sometimes, real life is just hard. When the tough stuff happens, we are learning to just completely treasure all that is good, realizing that it's all temporary...joy always comes.

Our neurology appointment was cancelled on Friday morning due to a sick doctor. It is now scheduled, along with a cardiology appointment and bloodwork for October 29, unless there is a cancellation. We have the benefit of being able to drop everything and head north, so we may be there next week--we shall see. She is scheduled to see the best of the best--for that we are grateful. I will try to update when we hear anything. Know that we appreciate your prayers!

Have a super day!!

Love,
Gayle

Where did the summer go??

Oh my goodness, it's Labor Day! It's just so hard to believe summer is over--it's been a good one, that's for sure. Since I've been about the worst blogger in the world, I understand if there is noone left reading! As far as journaling my kids' lives, this is it, so I will continue on and give them at least a little glimpse into our lives as I see it.

We have been a busy crew, that's for sure! Summer started out with a graduation...Derek's. How fun to watch him receive his diploma and be rewarded with his amazing efforts. Derek has been such a joy to raise--as we have dreaded sending him on his way, we are completely excited to watch the next chapter of his life be revealed. We also take seriously God's promise that all of Derek's days were written before one of them came to be. God has a perfect plan for this young man's life--how blessed we are to have a front row seat!! Derek spent his mornings watching Gracie for me and his afternoons were spent working on his tan, I mean lifeguarding, at the city pool. He found a new passion--SOCCER--and was able to play on a team that ventured to the Iowa Games in July. What fun they had kicking that white ball around. And he ran...and ran...and ran. He also found lots of time to spend with his friends, one darling one in particular!!

Connor also had a terrific summer playing golf and baseball. He put the bat to the ball in some pretty intense heat! Our summer was warm and every time I heard the complaints about how hot a particular child was watching baseball, I just had to remind her of all of the clothes Connor had to wear...she became quiet. Then Connor joined the soccer team that Derek was on and also took advantage of an opportunity to run with the XC team in Colorado. He was going from one thing to the next--fitting in a job at the pool and also lots of time with his friends, again a pretty sweet one in particular! And he ran...but not much!

Breuklyn spent lots of time with her furry beasts--even adding another to her horse family. Curtis decided to bring home an old, FREE horse. Wouldn't you know it--he's my favorite. He barely moves! She worked so hard preparing for fair this year, entering her horses, horse tack she had made and wouldn't you know it--her CUPCAKES made it to State Fair! She also was on the swim team and RAN...and ran. She also found lots of time to hang out with friends, go to the pool, do what 7th graders do.

Selah had a pretty great summer. It seems like her episodes are fewer than what they once were--perhaps we are headed in the right direction. She just loves to go to the pool and play outside--there is no need to fill up her schedule right now with activities--she really just needs to be home as much as possible. She gets plenty of out time just going with us to all of the games and activities--her time will come to have a crazy schedule. It's just not now. Since she spent so many years in an orphanage, she really never learned how to play. She now plays! That is huge...to hear her role-play, playing house, playing the mom, feeding and dressing her babies...at nearly 10 years old, it seems like she is much, much younger, but that's OK. She needs to go back a bit and find some joy in some things she missed along the way. Right now, Selah and Gracie are watching Veggie Tales, playing with the doll house as she acts out the roles--it's good to see, good to hear.

Gracie's summer was mostly great. She continues to battle some pretty intense leg and foot pain. We really do not have answers yet, but hopefully someone will figure out something. She has to endure so much that any suffering just seems over-the-top for her. Heart disease is rather pain-free, so this has thrown us for a loop. There are times she will cry for 6 hours in excruciating pain--we cannot find relief when this happens. Most days are good. She may have pain, but can deal with it...but those other days are awful. Gracie also had an episode a week ago that has left us a bit puzzled and afraid. She is fine now, no effects at all, but at the time it appeared to be a stroke. The CAT scan came back normal, but she will seeing a neurologist in two weeks.

We did manage a pretty amazing ROAD TRIP this summer. We spent one night on Michigan Avenue in Chicago shopping with our five kids...and it was fun! Really fun! So fun noone wanted to leave (when I say shopping, I mean we walked right past all of my favorite stores with drool running down my face and went into stores like Puma, Nike, Disney, Penguin, Adidas...no Banana Republic, no Crabtree and Evelyn). We left Chicago much, much later than planned and drove through the night to Niagara Falls. I was so insistant on getting this amazing suite overlooking the fireworks on Niagara Falls, spending way too much money and we checked into our hotel at 5:30 am, missing everything!! Niagara Falls didn't disappoint this tired mama though--it was fantastic!! We enjoyed that day so very much. We then drove to Mentor, Ohio where Curtis and the three older kids went fishing on Lake Erie and brought home 23 giant walleye--delicious souvenier, that's for sure! After fishing, we spent four days at Cedar Point riding all of the record setting roller coasters and went home! Sweet time, sweet memories!

Now it's back to school, back to work for me, off to college--we have someone in every school this year--college, high school, middle school, elementary, and one at home--kind of fun, huh? As we say good-bye to summer, 2010, we smile! It was a good one!

still here!

I apologize to anyone who is still checking in on our family--I have been horrible about updating this blog. I have started a post several times and just do not have the words. We are having a terrific summer...yet are struggling with some stuff with Gracie...I just can't put this all into words yet--our hearts are still sort of raw with all that is going on in her little body. I promise I will share more when I am able.

What I am learning is this...when our world seems to be crumbling around us, God continues to bless us. We are having so many incredible days with our family--we are making so many memories to last a lifetime. As follower of THE MOST HIGH, we do not only live by circumstance, but with hope, with joy, with love!

My time right now is very little on the computer...I have a little girl who is calling my name--I better run!

I have a GRADUATE...

an adult...really? We have had a crazy few weeks around here--this blog has certainly been taking a backseat to LIFE! So many changes lie ahead for Derek--in a few months he'll be packing his car and ours to head to Dordt College to study pre-med biology and continue his running career with track and cross country. We are so proud of his accomplishments and his character. He has been and continues to be a joy to parent. I've had so much fun with him these past few days as he has been my only "big kid" home. We've played some serious bean bag toss, sat in the sun, been amused at Gracie's continuous antics, and just enjoyed some sweet mom/son time together. I haven't shed a tear yet over graduation...and I don't think I will. Isn't this what our goal in parenting is? To give our children wings! I'm sure the day we drop him off at Dordt will be a bit different, for I will miss him something terrible. He's just a great guy! Today, I just rejoice in the past 18 years...so grateful for this tremendous blessing in my life!!

What a blessing to work at the post-graduation party on Sunday night!! It was a blast watching Derek and his friends dancing and laughing and just being! He and his friends are so like-minded, they have lived out their high school years with such dignity and morality--as I miss my own son, I will miss these kids who are like my own as well! This summer MUST be filled with friendships, good times, sunshine, and future memories.

I really need to get on my other computer--the one with pictures!! For some reason, that computer is slow on the internet, but great with photos--this computer is quick, but doesn't hold my tens of thousands of pictures.

Have a great day!
Gayle

a brief update...

Thank you for the emails...I do think some of them are going to Connor first--for some reason when I started this blog, his email is the one that is on the "dashboard". My email is glopp@myclearwave.net I'm so completely clueless with computers--not sure how to change it.

Anyways, Gracie is doing pretty well. Her foot/leg pain is daily at this point...sometimes excruciating, sometimes pretty manageable. We are just giving her motrin or tylenol to alleviate the pain. Her bone scan likely was normal because I have heard nothing back, nor have I called to begin more testing. The pediatrician we have at Mayo is hesitant to give Gracie more meds anyways because of her heart, so if we can get by with this for a bit, we will do so.

We are noticing some shortness of breath, decreased activity level, more sleep. When she runs across our yard, she is done for. She can play and play for hours, but any running or walking just wears her out. She can go upstairs and need to be carried back down...not normal for a 3 year-old, that's for sure. There has also been a couple of mornings that we have a hard time warming up her little body.

We are having fun watching her learn, listening to her sweet voice. She's a happy little girl, full of spunk and sass! She gives big, wet, long kisses, cuddles lots, and loves to role-play. She's always playing with her babies, who happen to look a lot like Buzz and Woody from Toy Story, she loves being read to, watching movies, and just hangin' with her mommy.

We also aren't really all that concerned about potty training or pacifiers! All those things that we rushed our other children out of are really no concern at this point for Gracie. She sometimes wears her big girl panties (her favorites are boys briefs because that's the only toy story ones we could find) but most of the time asks for a diaper. Big deal? Nope. Our house has never been messier or dustier...big deal? Nope. She doesn't know her ABCs and cannot count to 10...big deal? Nope. We just desire for her to enjoy life, to know she is treasured beyond measure. We love to experience the vast amount of joy she experiences--it's so hard to describe the feeling we have with her of holding onto each moment, not knowing if some of these days won't be around for long. I feel like I'm actually sucking her in, trying to freeze different moments. She told me last week..." Me get big, me pway socca...you watch? Ok? You watch? OK? " Will she get big? I don't know. Will she play soccer? not likely. Crushed dreams at 31/2--tough one to take...I sobbed. Then we went outside and played soccer...not crushed dreams--but possibilities. We have not given up hope for a future with Gracie...not in the least, yet we also have been hit with a brick of reality these past couple of months. It seems like we are on the fence right now--hoping and praying for life, yet living and breathing only for today. Maybe that's the way we should be living anyways...who knows?

Where's Waldo??

Notice who's peeking out her sweet little face in Derek's prom pics!!

Livin' the good life!!

We most certainly are!! Although we have lots going through our minds concerning Gracie, life at the Opps is rather fun. We are getting ready for Derek's graduation...oh, man, I'm going to miss this kid! He is/has always been a delight to parent. He has such a sweet, kind-hearted spirit that is full of adventure and silliness...at home, he's often the life of the party. One night he was out with friends at dinnertime and we realized how quiet our family was without him. He adores his sisters--all three of them! Sweet Gracie has him wrapped around her tiny little finger and she knows it. Mom and Dad might say "no" once in awhile, but Derek--NEVER! We are threatening him big time...you know, that day where he brings his kids over to our house so we can babysit--oh my...we will DELIGHT in giving them everything. No? What's that? Derek is having a blast with his track season, enjoying his friends, making many memories these last weeks of his high school time.

Connor has started golf and he loves it! He has been golfing rain or shine, cold or warm, sometimes it's pretty dark out and he's still missing. He had his first high school meet on Monday and is looking to improve his score next time. It wasn't his best day, but he's had some pretty amazing days leading up to it. He, too, is just so much fun! I love parenting high school boys--there is no drama...or not much drama, anyways. Connor and his friends spend lots of time over here, empty our snack box often, laugh LOUDLY, and just have so much fun.

Breuklyn has been back at the barn...which means I've been spending many of my days at the barn as well. One of my friends was out with her kids the other day and stated that she would've pictured me last of anyone to be out with these furry beasts. She's so right. I don't like animals up close and personal. I'm pretty much freaked out by anything alive and non-human. God is smiling, maybe belly-laughing when He watches what goes on in that barn. I'm pretty sure every hose is a snack, everything fuzzy is a mouse, disgusted by poop on my sandals...He must laugh. I love nothing more than watching Breuklyn's hair in the wind as her horse is running through the field with her on his bare back...she is gorgeous out there--exactly what she was made to do. I'm still sort of freaked out, but am stomping around there pushing heavy horse butts out of the way, throwing bales of hay, and yeah...stepping in poo!

Selah is doing beautifully! This is only God. We have been so clueless as to how to parent her unique needs...He has completely intervened. Her heart has changed so much in the past couple of months--it blows my mind. Not only is she falling in love with her family...we have fallen head over heels in love with her. She fits perfectly. Oh, how I enjoy listening to her read. She has so much expression, especially when she doesn't think anyone can hear her. We turn the monitor on when her and Gracie play together...at first for safety reasons, now just to hear their giggles, to hear them role-play...they are so incredibly tight. True sisters in every sense of the word. Thank you for praying for our daughter--God indeed is filling her up!

And Gracie...despite the bad news of a couple of weeks ago, she is doing super well. She talks and talks and talks and talks... Just a few months ago, she could say very, very little. Today, I sent my friend Sara, her speech therapist, a text that said She won't shut up! THanks :) It's true...she talks from the time she gets up until she goes to bed...her little mouth is always moving. She giggles with everything inside of her. What a little honey she is.

Life is good...it's amazing actually. Sometimes we get so caught up in what is hard that we forget just how beautiful our life actually is. The past couple of weeks have been difficult--we can't help but think of what is to come. But today--sheer bliss!

Oh yeah--and Connor is 15--am I really typing that? 15 years of awesomeness!!

feet and knees

Just a little update on Gracie. We have spent a large portion of our week at the Mayo Clinic once again to try to figure out Gracie's foot pain. In my not-doctor mind, I was thinking the surgery might take care of the foot pain as well, yet the doctors are convinced the foot pain is it's own issue. Foot and leg pain can often be an indicator of something bigger...no matter--we just need to find out how to alleviate the pain.

So on Wednesday, we headed north. Gracie and I met with a pedicatric rheumatologist. Her symptoms do, somewhat, align themselves with rheumatoid arthritis. Before making a diagnosis and starting a treatment plan other possibilities need to be weeded out. This past week she had intensive xrays and a complete bone scan. Yesterday we went for the bone scan--they had to place an IV, which is so scary for Gracie. She screamed and screamed...miserable, scared, just sick of the pokes. They called in pediatric specialists...by then, Gracie and I were both a mess. This is the most difficult things about parenting Gracie--watching her suffer. She's up at nights lots with horrible foot pain...and now knee pain. Then the many pokes. She walks into any medical office and declares, "no pokes, no owies, dus dawk, k?" (just talk) She so, so anxious about needles...and I don't blame her. They poke, and poke, and poke. She has no idea, nor can she conceive the idea that the pokes are for her benefit. I want to be her rescuer when this is happening, but instead I'm the one holding her down. It just stinks.

Yesterday, however, when the pokes were done, when the bone scan was complete, the technician allowed Gracie to perform an MRI on her Woody doll, who is actually her Nino doll, which actually is Derek...clear as mud? Anyways she strapped him to the table, pushed the buttons to slide him through the tunnel, closing the top really close to his little round nose. Then she told him...sweetly, yet firmly..."no wiggle woes, Nino." She held onto his head and his hand and put her face really close to his. Then she pushed the button to slide him on out. When the machine stopped, she gently picked him up, sat on the stool, and rocked him, kissing his little brown hat, and telling him that she loved him. That's what mommies do!

We are very uncertain about Gracie's future...what it's going to look like, how long it's going to be...yet we are convinced and KNOW THAT WE KNOW THAT WE KNOW Who is holding onto her future. When we are dealing with the tears...hers and ours...we know that in a moment there will be joy, there will be smiles, there will be laughter, for we know, without a doubt He is holding onto us.

Besides the foot and knee pain, Gracie is doing really well. She feels terrific, she has a lot of energy, she's talking up a storm.

Better run...off to dye some eggs!
Gayle

that's what faith can do

I've seen dreams that move a mountain,
Hope that doesn't ever end, even when the sky is falling.
I've seen miracles just happen, silent prayers get answered,
Broken hearts become brand new.
That's what faith can do!

Words by Kutless

Yesterday, after driving home from Rochester with tears flowing freely, this song came blaring through my car speakers--exactly what I needed to hear.

I will back up. On Monday, I received a very disturbing phone call from Gracie's cardiologist. He told me they had a "meeting of the minds" concerning Gracie's surgery that was on the schedule for this morning. After much discussion and review of her previous tests and previous surgeries, they ALL (2 surgeons and 8 pediatric cardiologists) were in agreement that it was too risky for Gracie to have this surgery. She not only falls into the high risk category, but is in every high risk category they have a category for apparently. Her cardiologist told me to bring her up yesterday, run her through the 8 appointments on her schedule and a final decision would be made.

We still had hope. This surgery has been the one that we were told could possibly give her a somewhat normal life, not a long life, but a much longer life. The key word is possibly. The doctors do not feel confident at all that she would survive the surgery, much yet the years following the surgery. If the surgery wouldn't be successful, there would be nothing left to try for her.

All that to say...no surgery.

Without the surgery, her ventricle will likely wear out in it's own time. It's a lose, lose situation. From a wordly perspective.

I praise God for another perspective! It wasn't doctors 3 years ago that healed Gracie's valve. Even Gracie's surgeon yesterday told me "Gracie's life is a miracle. She shouldn't be here today." That's what we are holding onto. Not one thing in Gracie has changed since Monday's phone call, since last fall's scheduling of surgery. She is the same--all of her tests were good (for Gracie), she gets to stay home, rather than be in the hospital right now fighting for her life. I was told yesterday to just enjoy my family, enjoy being together--that's what we will do. And pray...we will continue to seek the Lord, we will continue to trust Him with her life and that means trusting Him to give her as many days as He has planned. If He does take her home to Himself at a young age, we will continue to trust Him, we will continue to praise Him for allowing us to parent such an amazing child.

We've had a lot to process these past couple of days. Yesterday, it was as if our hopes were crushed. Today, I am so comforted by the fact that my hope does not lie in man, but in God, who loves Gracie more than I possibly can. He loves my family and His plan ultimately is a good one.

Praising through tears!
Gayle