Yesterday I shared about AJ. Today I'm going to let you know about my oldest daughter, KC.
As I had mentioned before, I adopted KC 9 years ago. At the time, she had a diagnosis of autism. She still does, but now it's pared with anxiety disorder, ADD, RAD, PTSD, and an unknown psychosis (still working on nailing down a diagnosis there).
All of these issues create a nearly impossible situation. KC is my sweet, sweet little girl stuck inside a mind and body that wants nothing more than to put an end to all that is good and right with the world. Not only does it tear me apart as her mom seeing her struggle so hard, but also as AJ's mom. Daily, AJ and I are in harm's way, never knowing when KC's explosive behavior may erupt.
We do have help and an amazing support system. We have counselors, therapists, psychiatrists, neurologists, neuro-psychologists, coordinated service teams, behavior specialists, children's long term support specialists, family crisis specialists, family support specialists, etc... In other words, way more people sticking their noses in our lives than I am comfortable with! :) I wonder if it's helping? We still are not safe. KC is still barely surviving the tumultuous storms inside her. I just want my baby to know joy and love and peace.
So, we are beginning to travel into some new arenas. We will likely start with cranial-sacral therapy and then add some neurobiofeedback. Unfortunately, many of these services are not available in our local community. So, some traveling will be in our future.
Anyone out there have any experiences with these therapies? What is your opinion of these alternatives?
"So do not fear, for I am with you; do not be dismayed, for I am your
God. I will strengthen you and help you; I will uphold you with my
righteous right hand." ~ Isaiah 41:10
Friday, October 19, 2012
Thursday, October 18, 2012
Hope
My sweet little AJ has a genetic deletion. She is missing all of 12q 13.13. So far, she is the only case of this exact deletion. For her it has caused developmental delays, low muscle tone, and probable HHT (Hereditary Hemorrhagic Telangiectasia) without any complications.
I give you this background knowing there are many of you that also live with kiddos like AJ. And some of you may also need a shot of hope.
Earlier this week, AJ and I saw her genetic specialist. After doting on her and indulging in her enchanted play, the doctor went out of his way to explain something. Something that surprised even me. He explained that once AJ is an adult, she will have a 50% chance of passing on the HHT to each of her children. Did you hear that? That was hope. Do you get it? The grace-filled hope that she may be able to have and raise her own children. I thought I was the only one that saw it. I thought I was just being the overly-optimistic momma... And that very well may be the case, but I am not alone. There is a highly well-educated doctor, that's been doing this far longer than I, that believes too.
What is your dream that seems far-reaching for your kiddos? Where are you lacking hope?
"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." ~ Jeremiah 29:11
I give you this background knowing there are many of you that also live with kiddos like AJ. And some of you may also need a shot of hope.
Earlier this week, AJ and I saw her genetic specialist. After doting on her and indulging in her enchanted play, the doctor went out of his way to explain something. Something that surprised even me. He explained that once AJ is an adult, she will have a 50% chance of passing on the HHT to each of her children. Did you hear that? That was hope. Do you get it? The grace-filled hope that she may be able to have and raise her own children. I thought I was the only one that saw it. I thought I was just being the overly-optimistic momma... And that very well may be the case, but I am not alone. There is a highly well-educated doctor, that's been doing this far longer than I, that believes too.
What is your dream that seems far-reaching for your kiddos? Where are you lacking hope?
"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." ~ Jeremiah 29:11
AJ at Genetics Clinic - All dressed up! |
Wednesday, October 10, 2012
Where to begin...
Welcome to Our Different Reality! Some of you may live typical lives, with typical jobs, typical homes, typical families, and typical pets. Others of you may be less typical. Our reality is, well, um different...and pretty darn amazing!
My name is Staci. I am old. Not really really old. Just slightly old. At least, that's what my girls tell me. I am, first and foremost, a child of the Most High God. I am mostly quiet, introverted, a care-taker and a people-pleaser. But enough about me. My girls are the amazing part!
KC is 14 years old. I adopted her 9 years ago. She loves carousels and squeaky toys.
This is KC |
This is AJ |
AJ is 7 years old. I adopted her 3 1/2 years ago. She loves...well, everything!
I hope you enjoy getting to know more about us. I gotta sign off for now, but I look forward to seeing you again soon!
Subscribe to:
Posts (Atom)