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.