progress... YES!

Oh my, it has been quite some time since I've added anything new to this blog. We have been in the mode of transforming our home. We recently had all of Vernell's (Don's mom) things moved up from her mobile home in Tucson. Our garage got completely cleaned out, only to be filled up again. Prayerfully, a garage sale it is the near future. In the process of cleaning, organizing and decluttering we managed to make a disaster of just about every room in the house. Why does it get worse before it gets better?? We are now on the upswing. Organization is on the horizon! The furniture has been completely rearranged. There is now a second fridge. The boys will soon have a clean space to play in their room (yikes, that was an adventure).

I am feeling lighter in mood when I see all the wonderful changes. Don and Jordon rewired Vernell's dryer and replaced it for our old dryer. Don and I replaced the faucet in our kitchen.... a bright and shiny faucet - I love how it makes ALL the difference in how our kitchen looks. Oh my, I am a happy girl!!

Clutter Chaos!

Oh my! How is it that no matter how hard I try, I ALWAYS end up making such a mess of the house as I am actually trying to clean and organize it?? I am sitting here at two o'clock in the morning wondering how did I create such chaos today. Tomorrow morning is the Oklahoma vs. Texas game... Go Sooners! I have so much stuff to get out of the way before we can even get settled in to watch the game. Praises for TIVO - so we can start recording the game if we are not ready at 9am.

I feel a sense of accomplishment, yet I know how much more there is left to do. Our Fall Break from school ends on Tuesday, I better get busy finishing up all of these projects I am smack in the middle of before I head back to the preschool classroom.. Will I never learn to tackle only one small area at a time? I get sidetracked until I have created a big ole' mess and then get too worn out to get everything put back together before a day is over. I do know that when it is all done I will be SO much more content. Clutter in my house makes clutter in my spirit. I find it harder to enjoy the life when I am surrounded by too much stuff. Guess I better get some zzzzzzz's, tomorrow is already here, lol!

Overcome with joy!

Happy, happy day! I am so thankful that God blessed us with a wonderful day. I needed this so much! Prayers are being answered!

The kids all got along for the whole entire day! No, really they did!! We have left the Lord of the Rings Monopoly game (from Jordon's birthday) set up on a folding table in the kitchen all week long and the kids have spent so much time playing it together. We also have recently acquired three sets of roller blades: one pair from our friends and found the other two pair while treasure hunting at Goodwill. So three pair of blades for a grand total of $8.00. The kids have been having a blast practicing their skating skills. Yes, we let them skate in the house today... I KNOW it is not a good idea, but we were having such a grand day that I was able to set aside my usual "can't do that in the house" attitude and just let them continue the fun. I am proud that I didn't get in the way "for safety sake". Once they got a bit more confident in their skills, they did a little bit of skating outside, too. Then they played Frisbee until it was getting dark. We even got them to come inside without difficulty, AND take showers before sharing in a yummy apple crisp I cooked up today. By 9pm all three were in pjs, night meds taken, teeth brushed, and off to bed. Wow! Really... I am not making this up. I know that God gifted us with this beautiful day. I am a realist, so I am fully aware that every day will not like this... however, WOW! What a day!

The day started off with a lab appointment for Jensyn at 10:30. She was still in bed asleep at 10am, eeks!, but she woke up moments later and got ready to go pretty quickly. She was not excited to go to the lab (who is?). I was certain that she would be frantic about not getting to eat breakfast, so I packed her a snack of cheese and crackers and fresh strawberries to eat on the way home. She survived the lab... no tears! Way to go, Jensyn!

Also, today was the first day of changing how she has been taking her meds. Instead of everything being taken at bedtime, we are now able to divide it into three doses. It made such a difference today, SUCH a difference! I am beside myself with joy about today. Yes, please do feel free to remind me of this day on days (like yesterday)that I am feeling steamrolled.

I don't even have the words to express my thanks to all of you who have been lifting us in prayer. We completely felt the results of your prayers today. xoxoxoxoxo

My heart is breaking...

Gosh, it has been a little while since I've gotten to post something new about Jensyn. Technically, this is not really "new". We are still trying to help Jensyn survive through this most difficult time while she gets stabilized on her current medication. Not sure if I ever officially divulged what challenge she is struggling with... it is not very easy to talk about. However, we went back to the doctor today and she used "the diagnosis" again, so I guess that after a year of trial and error and the last two months of med changes, we are giving this challenge the name Pediatric Onset Bipolar Disorder. It is a huge deal for me to share this with you. I have decided that we will not be the kind of family that has our "hidden secrets". There can be so much stigma attached to bipolar disorder and I am determined to make people aware that this is a medical condition, a brain disorder. I choose to share our personal information with you because I am confident that you will look past the disorder and see only the precious little girl who is being challenged with troubles that no child should have to deal with. Because she is so amazing at maintaining herself out in the world,I can almost guarantee that, had I not shared this, you would have never even known any of this about Jensyn.

So, back at the doctor today and we are increasing the med she has been taking since last year and we are maintaining the new anti-seizure medication, but stretching it out to three times a day instead of all at bedtime. This is soooo difficult to go through because we changed her meds due to med related weight gain, yet at this point she is still gaining weight... not quite as quickly as before, but she is still gaining =( [the previously posted 2# weight loss turned into 4# gain the next week]. Jensyn also went to the Pediatric Endocrinologist this week and he agreed to start her on a med called Metformin (actually a diabetes med) that we researched as being used to help halt and prayerfully reverse med related weight gain. We are giving it a 4 month trial to see if there is any change.

It seems so unfair that she would have to go through all of this. We are praying that these newest meds will really start working soon, the dr did tell us that it may take a while to really kick in. So in the meanwhile we are surviving day by day. It is like living with a completely different child, she is sad and mad and loses control for absolutely no reason, she cannot be consoled with our words, they just seem to prolong the anger. No matter what response we give, it is never the right one and the anger starts all over again. Oh, how I wish we could find anyone else going through a similar situation... it is almost impossible for those outside our home to even fathom the heartache this is causing. And although I know that she has zero control over what she is doing right now, I find it hard to remember that all day long as we roll from one episode to the next. It seems so wrong that I would be frustrated, even angry at times, with her for the things she is unable to control.

I have been reading and researching and educating myself and my family. I found an interesting description... what she is experiencing is like a "behavioral seizure". It makes sense to me, but to those who have never been audience to it, perhaps it will never make sense. I have learned that there is no way to reason or be logical with her, there is no way to talk to her without it being interpreted as aggression. The most terrible part is the paranoia... like when I glance over at her and she questions "Why are you looking at me?? STOP looking at me?? What do you want??" I tell you me heart is breaking today... I am mourning the joyful moments that I am missing out on.

I DO know that there is a plan and a purpose for all that we are going through. I have no doubt that God will use this beautiful girl for His Glory! It is days like this that I cling more tighly to my faith, knowing that God is with us. I am looking forward to the moment that her meds start working and I "have my baby girl back". I can't wait for the day I can post such wonderful news and we can rejoice together.

I feel that, for many, I may have shared too much information (tmi). Somehow telling my story helps strengthen me, so I thank you for continuing this journey. I appreciate your prayers and support - it means the world to me and my family.

Birthday Blast

Happy Birthday, Jordon! So hard to believe that our first-born son is going to be 12years old tomorrow - wow!

Every year I make a special birthday cake for each of the kids. I'd show you the pics from last year, but when I went to download them, the memory card gave me the message that it was unreadable....grrrr, so much for treasured pictures.

I am happy that I DO have pictures for this birthday - Einstein! I have never had so much fun creating a cake. It was my first experience using marshmallow fondant, such a BLAST! It is a simple recipe with marshmallows, powdered sugar, and water. Trying to choose a design that would be a total surprise was challenging. Jordon loves Star Wars and I had already made a Yoda cake (10th birthday) and a Light Saber cake last year (11). However, he has great interest in Einstein and actually just finished a project for school about Einstein. It seemed like a great idea, so WAH-LA, the Einstein cake was born. I made the fondant on Sunday because it is supposed to sit for 24 hours in the fridge. Yesterday, I started sculpting the pieces for the face: nose, eyes, ears, mouth.... ever so carefully working the fondant and working in the colorings that I needed. I hid the pieces in a container in the bottom drawer of the fridge to keep them top secret and safe. Guess what...I got up this morning to bake the cake and put the whole thing together - WHAT HAPPENED?????? The container was EMPTY, I kid you not! After many tears on my part and a not so loving voice...I found out that Jaidon (almost 8) had EATEN them when he got up early. OH NOoooooo YOU DIDN'T!!!!!!!!!!!!!!!!!!!!! After recovering from the shock of it all, I actually had enough fondant to re-create all the pieces for Einstein's face - Praise God!

We ended up enjoying this cake today instead of waiting until tomorrow... just to ensure that Einstein wouldn't disappear! The look on Jordon's face was priceless! I love that boy!!!

Can you figure out what the hair is made of??????

(cotton candy)

frustrated, but happy = D

I am F R U S T R A T E D!
I somehow erased everything I had just typed about the journey we have taken with Jensyn since the summer of 2008. It was amazingly draining to write and I do not have the oomph to re-do it right now.

I am happy to share that Jensyn is doing better... we will increase the med again on the 29th, and we are praying that it should be the perfect dose to help her stay balanced. Right now the dose she is taking helps her maintain well until about 5pm before things start to unravel. This journey has involved a Psychiatric Nurse Practioner, Peditaric Neurologist, and Pediatric Endocrinologist...along with tons of labwork, and EEG and an MRI. Everything was going well until the first meds caused almost 30 pounds of weight gain that was not halting. Hence, the need to slowly eliminate the weight gain causing med and hoping that it did not need to be replaced. It turns out that Jensyn did need a replacement med and now we are in the phase of finding the right dose to help her live successfully.

Along with Jensyn doing better... she has now lost about 2 pounds :D :D
There is a possibility that her body will slowly lose the medication related weight gain and she will have control of her body back. She deserves to
feel comfortable in her own skin.
I am excited for her to dance like she used to! Ooohh... I LOVE my Jensyn!

Feeling better!

Today I find myself handling life a little bit better than when I last posted. (whew) So, no warning is needed this time ;D

Within the last two weeks we have been adjusting to Jensyn's new diagnosis and we came to the point of emotional, physical, and mental exhaustion. I have found that creating this family blog is wonderfully cathartic. Somehow, writing it all down and actually sharing with others makes it easier to digest.... maybe that doesn't make much sense, but really - it doesn't have to. I invite you to continue this journey with me if you are interested. I may stumble my way through most of this, but in the end, prayerfully, both you and I will have a clearer view of life within these walls.

Let me start by explaining that NO ONE outside of this house has ever really observed any of the things that have led to our children being diagnosed. Apparently they work really hard to maintain the "expected normalcy of life" out in the world, so much so that it creates a kind of bottled up frenetic energy that releases in the safety of our home. I always wondered why everybody else seemed to get "the best" of our kids and we got what was left. Yes, I KNOW that it is like this in so many homes and it really can be quite a normal thing. But it just never really felt "normal" for us... everything was just MORE...not sure how to explain it, but just more.

bad parenting.... really????

Let me take a moment to apologize before I even get started. I am about to uncage the, grrrr...Mama Bear in me. I gotta let it out every now and then... and perhaps it won't come off as sounding very Christian (at this point my head is thinking "whatEVER",lol).
I did not sleep well last night and I am now awake and quite agitated. I am frustrated, no, I am ANGRY, that so many people out there are still questioning, judging, "sharing their concern" about my family and how we care for our children. In previous posts I have mentioned how special our children are, in that they each have a challenge to face in this world. Their special-ness labels them with diagnoses that most people simply claim is "bad parenting". Oh, believe ME, I have thought the same thing myself for years before we knew what was really happening in our home. I beat myself up thinking I was the most horrible mom, not able to maintain any control, not able to teach obedience, getting mad at them for lots of things... I have been through it all.
So here is the scoop. Within the mix of our three children are the following MEDICAL challenges, yes, I stress MEDICAL, because as I said, there are so many who continue to attribute the behaviors of our children to our parenting style. Okay, (deep breath) here we go.... Attention Deficit Hyperactivity Disorder-Inattentive, Asperger's Syndrome(a type of high functioning Autism), Anxiety, Tourette's Syndrome, possible seizure disorder, Pediatric Onset Bipolar, Attention Deficit Disorder-Inattentive, and Attention Deficit Hyperactivity Disorder(strongly hyper).
At this point your head is probably spinning, as is my own. HOW can there be so many things... aren't you just labeling your kids, don't put them in a box, you just really need to be more structured, you probably ought to give them each a good, hard spanking, they are fine when we see them so your house must be out of control,I don't see any of that in your kids,you are too hard on them, you're just taking the easy way out and medicating them so you don't have to be a parent. Oh the list goes on and on about what people have said....and all of it hurts my heart.

Later I will help to make it ABUNDANTLY clear that this is not all some made up world we have created. I will explain how we (Don and I) have become researchers, pharmacists, statisticians, observers, therapists, experts, nurses, prayer warriors... This is not the easiest of tasks we have been given, yet having a better understanding of our children and how they are functioning in this world makes a world of difference. The harder part is understanding the looks and comments of well-meaning people who are certain that we are the ones causing the difficulties for our kids. Grrrrr gggrrrrrrrr, UGH! WhatEVER! (not my best, most Christian attitude, but sometimes I just have to make it through the day)

More later, if you can "bear" it, lol... sometimes ya gotta laugh, or you'll cry.

Us

God has created our family with a unique dynamic of personal challenges. We have faced them as a family with tears of sorrow and a feeling of loss, followed by tears of joy and a knowing that God is with us every step of the journey. Our three children have each been handed their own neurobiological brain disorder and the individual hoopla that comes with such a medical condition. We have been blessed to discover the specialness of each of our children and we have learned how to best help them live successfully in this world. Some days we float through feeling light and carefree, yet other days we trudge through with such heaviness to endure. As parents, we have run through the gamut of emotions: sadness, confusion, guilt, despair, anger, happiness, joy, love. On any given day we are a good mix of all of it. We have questioned God, only to be reminded that He is with us and there is a plan in all of this that we just are not privy to. So, we TRUST... and pray.... and seek comfort in the support of you - our friends. The last years have been hard, eye-opening, challenging, AND full of opportunity. We have learned to understand our children and how to parent them in a way that "fits". Oh, yes, we still have very frustrating moments... but they have been reduced to just moments, not days. Okay, sharing all of this has been both draining and liberating at the same time. If you have made it this far, we thank you for your interest in our family. We appreciate your understanding, caring and support - it means the world to us. We will continue to share more details as our hearts will allow.

Can you believe it?

Ready, set.....go! I am jumping into the world of blogging, still quite unsure of what I am doing.

I would like to personally welcome you to our family blog - we are the AMAZING GRAVES. Kinda cute, huh? I was actually trying to use the name Graves Gang, only to discover that the name was already taken. Imagine that...another Graves Gang out there in the world... say it isn't so, lol! I was so stumped coming up with something to go with Graves... then my brilliant hubby says, "What about Amazing Graves?". I like how it is a play on Amazing Grace... a most powerful song. It is a perfect fit for our family. We have an amazing God who we strive to follow daily. We have an amazing family dynamic, unlike any other family we have met. We have three amazing children who shine brightly in this world, each in their own amazing way.

I will do my best to keep you up to date with the happenings in our world. So, please come by to catch up our latest hoopla... there is truly never a dull moment.