Here we go again!

{{ sigh }} 

I wish things could be calm for a little bit - but unfortunately the rain is picking up.  We were informed yesterday that my son will be discharged within 2 weeks even though the therapist states he needs 4 - 6 more months of treatment.  Our insurance has exhausted so he must now be switched over to FL Medicaid.  This was always the plan - from day one when we entered the hospital.  Out private insurance had 150 days of care, when that ran out if he required more time he would just be switched over to Fl. Medicaid (this is his secondary insurance - special needs adoptions usually provide Medicaid).

 Sounds simple enough right??  Nothing ever seems to be simple ...

The hospital also informed us yesterday that they do not take Fl. Medicaid.  You can imagine my surprise since this is something we have been discussing with them since day one!  It seems they thought he could just be switched over to Arkansas Medicaid and everything would work that way....we are in the middle of a permanency plan for my child -- this would have all kinds of complications.  In Florida everyone is on the same page - DCF & the courts understand this is not a case of parental abuse - but rather a case where it wasn't safe to have the child in the home until treatment occurs....you can imagine the mess we will be stepping into if we attempt to change all the players. (if we even could switch to Arkansas Medicaid - which is a big "IF") 

 A facility in Virginia has been suggested to us by the hospital.  I called and checked out the website -- it seems to be a good hospital and a good fit....they even have an opening.  Our only 2 problems (1) Will FL Medicaid approve?  (2) Our child has Cystic Fibrosis as do 2 other children in this hospital.  CF kids cannot be around one another because the different things that grow in their lungs can be harmful to other CF kids (this is the reason they stopped having CF summer camps).  So everyone’s particular lung bacteria’s have to be checked before he can be approved to make sure everyone is compatible.  UGH!  Why does everything have to be so complicated?

So now it's a waiting game - we have applied to the hospital in Virginia, we have applied to Medicaid.  We have very little time -- the flood waters are rising quickly.

Thank God we have an advocate and a Doctor back home helping us - otherwise this would be impossible!

Dancing despite the thunder,

Amy

OH NO!!!!

I know - two posts in 24 hours is a lot -- but my heart is so grieved this morning.  Our adoption support group is in trouble.  The Sylvia Thomas Center for Adoptive & Foster Families has played an intrical role in keeping our family together.  I have not shared many things that have happened in our home on this blog because I do not know how much a person who is not in the same situation would understand - so you get a taste of our lives -- but not the full course.  I will tell you this - the last 6 years have been a nightmare at times.  I have not known how to cope with some of the violence that comes along with a severely mentally ill child.  But there was someone who understood - The Sylvia Thomas Center.  They have been there for me in so many ways.  They have provided emotional support of other parents going through similar situations.  They have provided my stable children with outlets more times than I can count.  They have brought a behaviorist into our home that we never could have afforded.  Not just any behaviorist - a great behaviorist - one who thoroughly understands RAD and what it can do to a family.  They provided a therapist for my youngest child who desperately needed to work out anxiety issues while not understanding her emotions.  She loves her brother but was afraid.  They helped her.  They provided me with extra eyes in the summer time sending an intern to my house 3 times a week during the summer months when my RAD child had to be in line of sight at all times.  They provided case management by developing safety plans and always being supportive and nonjudgmental.  I cannot tell you the number of times I have sat in Sharon Due's office in tears because I simply did not know what to do.  She provided a listening ear, a hug & real world solutions.  For a couple of years when times were really tough financially they provided Christmas for my children - all my children - not just the adoptive one.  They have helped me get my son into a facility when it seemed impossible to do so because he has both a mental illness and a physical illness.  They helped monitor the facility.  When the Department of Children and Families got involved in our case - they were there to vouch for us and say that we were good parents.  They have done this for countless families.  They provided all this at no cost to me.  I can honestly say if it were not for the Sylvia Thomas Center it would not be likely that our family would still be together.

Now the Children's Board of Hillsborough County wants to cut funding to the Sylvia Thomas Center.  Countless families will be affected.  Countless families will separate and children will go back into foster care when there is no support for the parents and families.  My heart is so sad.  Below is the news article:

http://www.wtsp.com/news/topstories/article/202227/250/Budget-cuts-to-affect-post-adoption-agency

I ask you - if you live in Hillsborough County or if you are the parent of foster or adoptive child to write the Children's Board and tell them how important the Sylvia Thomas Center and agencies like them are.  Ask them to not cut the funding.  E-mail your letters to Sharon Dues <sdues@sylviathomascenter.org> and she will forward them to the Children's Board.

Dancing in Sadness,

Amy

Sunshine despite the Rain

Wow!  I can't believe it's been so long since I posted!  This week has been a whirlwind.  We moved in with our friends Amanda & Gabe.  I cannot believe how kind they have been - truly hospitable people with very loving hearts.  We spent the week learning how she does everything and they left for Europe yesterday.  I am hoping that when they come home I'll be able to tell them that we have found a buyer and sold her house -- they would be thrilled.  (They are changing stations with the military).  So the week was filled with moving, learning the intricacies of her house and all the technicalities for selling it & just having a good time with our great new friends.

My oldest son finally saw the specialist.  His pain had subsided, but we were so thankful the appointment finally had come.  He had 2 previous sonograms that had showed a tumor -- this time the sonogram showed nothing -- the tumor was completely gone!  I had to fight back the tears when the doctor told me it was gone.  Of course the doctor had an explanation of "why" it could just go away -- but I know it is because so many people were praying.  God is so good.

Right on the heals of learning my son was going to be okay - my mother called to let me know my Dad had suffered a small heart attack. (literally - I was on my way home from the doctor's appointment) I couldn't help but pray "God I really would like to catch my breath sometimes" - but I knew that God had everything under control - He took care of my son - He could take care of my Daddy.  The doctors caught it in time and have placed another stint into his heart.  He was released from the hospital yesterday.  Again may I just say - God is so good.

Today my child with RAD had the best pass we have had to date.  Things went very well.  Before he went back to the hospital we had a talk about the things that make him feel safe so we can incorporate them into our house.  He became very glum and expressed that he really wants to come home but doesn't think he should come home.  He stated that he isn't ready. We assured him that no one was going to make him come home before he was ready & that would be a team decision - his doctor, therapist, Mommy, Daddy & him.  It was not a pleasant conversation, but I took it as progress that he was open with us and that he realizes that he is not ready.

Today I am hopeful.  I saw God provide us a nice place to stay & take perfect care of my oldest son & intervention for my Daddy.  While it is still raining where my RAD child is concerned - today the sun is shining through the clouds.

For a family - together is the nicest place to be & one day my family will have that again.

Dancing in Hope,

Amy

The Perfect Mom

(Cue soft classical music please)
Growing up all I ever wanted to be was a teacher and a mommy, but mostly a mommy.  My sister and I spent countless hours sketching the design of our houses and talking about what life would be like when we were mothers.  We were going to be the best mothers out there.  Kids in the neighborhood would always be at our house, because that’s where everyone wanted to be.  Our children would be well mannered, secure and at the top of their class.  They would be soooo happy that we were their mothers......nobody can be perfect, but we knew in our hearts - we'd come pretty close.

(This is where the record player screeches to a halt)

Funny how life turns out.  I am not a perfect mother and struggle constantly with feelings of inadequacy.  There was a time in my life, when my oldest two were very young, that I was well known and very respected in the homeschool community.  I believe I gave the image of "having it together" that so many of us want to have. 

Enter RAD child.  Wow - how this child has rocked my world.  Gone is any image of having it together - fact of the matter is - I do not even care about the image any longer - I just desperately long to be what I am not.  Our family therapist has suggested the book to me "The Good Enough Mom" time and time again.  I can't get past the title....yeah that's what I want to be "good enough"  Maybe my epitaph one day will read "Loving wife, good enough mom".  Yeah -- that's what I want.  I don't want to be adequate - I want to be great! ( I know - I should read the book - maybe one day - but today is not that day)

But – “great” is what I constantly feel that I am not.  I allow Satan to place thoughts in my head like "What kind of mother cannot keep her family together?"  "What kind of mother let's her child go into foster care and can't find an alternative to keep her family safe?"  "What kind of mother allows her kids to go through such trauma?"  "What kind of mother has to work so hard at getting her child to attach?"  Many of you - your heart is crying right now because you can relate all too well to the questions.

I want to ask you this today - "Do you love your children?, Would you do anything for them?"  Then if you too struggle with the above questions (or similar ones) call them what they are - Satan's lies.  You are a great mom.  If you are like me - you accomplish things you do not even give yourself credit for because your family does not run like the Andy Griffith Show.  Try to remember - that’s because we don't live in Mayberry.  Our life is not black and white - it's in full "Technicolor".  For those of you who struggle because your child is in residential or your family is separated for some other reason beyond your control and you start feeling like "What kind of  mom can't keep her family together?" - ask yourself if the women of the holocaust were bad mommies.  Of course they weren't - -- circumstances were out of their control.  Sometimes circumstances are out of your control too.

My two oldest children do something that is a balm to my hurting heart.  A few years ago we did a study on Proverbs 31 ( the perfect women).  One of the verses says that “her children will rise up and call her blessed.”  We talked about what that meant.  My 2 wonderful, sensitive, incredible children will sometimes - when they see me having a bad day - come over and whisper in my ear - or hug me and say really loud "Blessed, blessed - blessed"  Makes me tear up just thinking about it.  (Just one of the many items that I stick in the pockets of my heart to pull out on bad days.)

I shared all this because I know I am not the only one that struggles with this - I bet all trauma mamas do ( at least to one extent or another).  And many moms that are not trauma mamas.  It's in our nature, we love those kiddos, so we so desperately want to be what we cannot be.  But we can point them to the One who is.  After all - isn't that what it's all about "Love God and love your neighbor as yourself"  If we were perfect - they really wouldn't look beyond us to Him.  Through our imperfection we can point  them to the perfect One.  And that my friends is what makes each of you an incredible mom - your love for your children - your desire to be better - and your desire for your children to know the loving God.  You deserve to be called “blessed” by your children – and one day you will be.  You may not be the “perfect mom” – but “your price is far above rubies” because you are an incredible mom – whether you feel like you are or not.

Dancing in imperfection ( and trying to be okay with it),

Amy

Wind's a Changing!

Wow - you guys must be praying for my family - Thank you.  The last 24 hours have been bright.

We took my son back to the ER yesterday because of his pain level.  They did some more tests and came back alternating the word tumor and the word cyst.  I said "Which is it - a tumor or a cyst?"  The doctor said "a cyst is a tumor"  "Maybe technically - but not in my world -- tumor implies cancer."   He studied me for a couple of seconds then said "This type of tumor is rarely malignant - the chances are miniscule."  Relief flooded my soul.  He then told me to follow up with the specialist.  I explained our dilemma with both the insurance and trying to actually speak to a person at the doctor’s office - "I would like a follow-up scheduled through the ER please"  He urged me just to go home and call until finally I said "I'm not leaving without follow-up care, even without cancer - my son is in a lot of pain" (I don't think he liked me much - I made him explain things to me that he just wanted to rattle off.  That's what happens when you have another child with a lifelong disease -- you learn to expect understandable answers to your questions especially when you are accustomed to the wonderful pulmonologist my son has – she treats a parent with respect and doesn’t try to talk over our heads.)  We were told the doctor was in surgery and would have to wait maybe a couple of hours." I told him that was fine.  Much later a resident came in to talk to me (I guess doc didn't want me asking more questions J) and told me they had spoken to the surgeon and one of his residents would be calling me tomorrow as the clinic was already closed... and so we left.   But left with the knowledge that my baby doesn't have cancer!!!!!

Another amazing thing has happened to us.  Some friends of ours here in Arkansas, Amanda & Gabe, have offered to let us use their upstairs for the remainder of our stay.  What an incredible gift - I was so overwhelmed when the offer was made and now my heart is just filled with gratitude.  Paying the hotel bill while we have been here is like paying two mortgages for us (we still have to pay our mortgage back home)- it's been difficult to say the least (but isn't that the kind of thing we all are willing to do for our kids) - this will ease such a burden - I can't even begin to tell you.

And to add to everything else, my best friend Kellie called me yesterday to say she and her daughter were coming up to Arkansas to visit us - they will be here tonight -- I AM SO EXCITED!  So is my daughter.

I’m allowed to call my son tonight in residential – I’m hoping things are going as well in that part of our lives too.

So the wind is definitely blowing in a different direction - I'm not as tired today.  The storm is turning  from a chilling one to a warm summer rain.

Dancing happily,

Amy

Strong Enough- Matthew West

Have you ever been so very tired that you really don't know how to keep going? That has been this week for me. On the 4th of July my oldest son woke at 4am in incredible pain. We took him to the ER and he has a tumor. A TUMOR!!!!

We were told to bring him to the doctor the next day because of it being the 4Th nothing would be done until then - but he definitely needs surgery. I thought "Really??? How much more are you going to give me God? I can't handle this too."

The next morning I called his pediatrician and told her everything. She attempted to put in the referral to the specialist....Our insurance company would not let it go through -- we are out of state for more than 30 days - we have to switch regions.....UGH!!!! After explaining to the agent the type of pain med my child is on every six hours to maintain the pain I got her to authorize one visit -- but no more - we have to switch regions, which takes time. (to give you a little clue as to his pain - they offered him morophine in the ER). We are having problems talking to a person at the specialist office - first of all it has to be doc to doc consult for the first visit. Our doctor has left several messages...UGH! AGAIN!

I cannot tell you how tired I am of fighting for every medical appointment in my children's lives. (not to mention everything else I have to fight for in their lives). I am fighting on a daily basis for treatment for my child with RAD and now it is starting with my older son. The diagnosis & watching him in pain is hard enough -- I shouldn't have to be fighting to get him a medical appointment! Same thing with my other son...the things I deal with on a daily basis take so much of my energy....that the system zaps what little I have left! And I really need that energy right now -- as of the 4th he's not doing so great.

Today I am weary...I'm simply not strong enough for this...but at least I can rest in the fact that He is strong enough for the both us.

I hope you listened to the song - it's beautiful.

Dancing wearily,

Amy

Outrage

As I listen to the news and review posts on Facebook about this little girl who was so severely abused and no justice has been declared for her, my heart mourns.  My heart mourns even more at the number of people who are outraged by this incident, because they will do nothing but talk about how mad they are.  I live with a child who was severely abused and neglected, this abuse has had serious ramifications on him and my whole family and yet his abusers walk around freely.

Today I was reading my friend Tracy's blog - she said exactly what is in my heart -- so for today my blog is "Go to Tracy's blog and read it"  www.attachmentsupport.blogspot.com

Dancing in the hope that people will do more than talk,

Amy

Bravery

My kids are often asked to be brave (feeling the fear and doing it anyway).  Loving someone with mental illness is not easy and it requires true bravery at times.  Many times though, we overlook at how this affects our kids everyday life - something they have learned in one area will cross over into other areas.

This week my eldest son and youngest daughter decided they wanted to try out for Missoula's Children’s Theatre.  This is a traveling theatre group that comes in - holds auditions and the children have one week of intense rehearsals and then a production.  We talked about while I was happy for them to try-out; they needed to be aware that there would be MANY cuts - not everyone would get a part.  They were convinced they wanted to do it -- so Monday morning bright and early we were in the community hall with almost 90 other children and their parents. 

The auditions seemed to go on forever -- the children were placed in a large circle and the directors would move children from one part of the circle to another after they said various lines- which kept all the parents wondering "was that a good move - or a you're getting cut move?".  Honestly I think all the parents were more nervous for our kids then the kids were...at least until "it" happened.  The director said "Now I need to hear you sing"  Oh no!!! My kids don't sing in front of people -- nobody said there would be singing!  He began having groups of 10 kids singing together and just would come by and listen in front of each child.  "Oh now - that's not soooo bad" I thought.  Then "it" happened -- he pointed at my son and one other boy and said "Move forward - I need to hear you sing alone"  Okay - there were well over a hundred people in this room - my stomach was in knots for my child.  I thought "He's never going to do it -- I know I wouldn't"  He pointed at my son and my son did the most amazing thing.  He nonchalantly looked around the room and opened his mouth and in a clear loud voice began to sing.  Wow - I was so proud -- not because he sounded good (which he did) but because he did it!

I asked him after the audition if he were scared and he said "terrified - but I knew if I wanted the part I needed to do it"  Bravery -- feeling the fear and doing it anyway.  On Friday night my son made the best Gryphon & my daughter the best lobster Alice in Wonderland has ever seen.

It may seem like a small feat to you - but I think it's huge.  How many opportunities pass us by because we are scared?  How many times do we not do the right thing because we are fearful?  God did not give us the "spirit of fear" hmmm... so who do you think it is that does?

Be brave in your life today - whether it is something that you know that you should do or something that you really want to do.  Be brave --- feel the fear and do it anyway.

Dancing with pride in my children,

Amy