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!!