It’s Complicated. (But)

Do you dislike that statement as much as I do?  Somehow to me “It’s Bethany ChristmasComplicated” says “It’s too hard or It’s too challenging or maybe It’s just too much.”  And then there is the statement “It is what it is.”  UGH!  I’ve had a lot of discussions about that statement too… Not everyone agrees with me, but what I hear is, “You just have to accept it.  It can’t be changed.”  Something rises up within me when I hear this and it fires me up.  I start thinking… “For I assure you: If you have faith the size of a mustard seed…”

My heart is pricked when I allow myself to think I have to accept things as they are.  As my Mom would say, “It rubs me the wrong way.”  I don’t mean that we should deny truth.  I just don’t believe we have to be defeated by it.  I’m beginning to think that is one of the fine lines between faith and unbelief.  Accepting that circumstances are difficult is “truth.”  Believing God can enter those circumstances and turn them for good is faith.  “Now faith is the substance of things hoped for, the evidence of things not seen.”  Heb 11:1

We thought we had arrived at a place where we were going to be able to secure our girl a placement and start her on a life of independence.  The treatment team had worked months planning.  Then last week we got some news that rocked our world. She’s not eligible.  By the time Friday arrived and we had our last meeting for the week, it felt like we were spinning out of control, eyes crossed and glossed over and struggling to focus.  It’s how I imagine figure skaters feel when they do those dizzying spins at the end of their program.

The truth is:  Our girl is difficult to help.  She’s “complex.”  Her IQ is not quite low enough to make her appropriate for some services and not nearly high enough for others.  Her ability to safely function prevents her from living on her own and also from being appropriate for community services.   Her age makes her too old for some programs and too young for others.  Some programs only work with males and some with females.  Some accept insurance, some don’t.  Some will take a person in parental custody, some won’t.  She’ll be 18 in a few months and we have a lot to figure out.

One recommendation is to place her in state custody right before she turns 18, which would insure she would have an appropriate placement.  Well, maybe.  The state gets to choose what programs they are going to fund for which child.  This is called “The Devil’s Deal.”  Relinquishing custody of your child in order to get necessary medical services (you hope… it’s not a guarantee).  You would not believe how many people have to do this.  It’s wrong and we need to take a stand against it!  Her treatment team believes this will cause her to regress and it will be detrimental.

There is something called EPSDT funding, which is available through the federal government.  Children who have been through the foster/adopt system may have a better chance to access this funding, but if Medicaid bulks, it can require a federal lawsuit.  But it doesn’t require relinquishment of custody.  This we believe, is our best option.  Confused yet?

Then there is guardianship.  The waters even get muddier here.  Hopefully an attorney can help us sort this out.  We’ve been assured that we want to keep her in the “Child System” until she’s 21.  The “Adult  System” is “too dangerous and she’s too fragile.”  We believe we’ve gotten her extended in the child system until she’s 21 by virtue of the seriousness of her challenges.  But we’re far from being done.

So you see, “It IS Complicated.”  But.  I believe.  Only God can make a difference.  Only God can show us the way.  God has her best interests in mind.  He loves our girl and he loves us.  We believe God has “purpose” for each of us and that includes our very “complex and complicated” child.

Let me tell you about her strengths.  She’s hysterically funny.  She’s bold and courageous.  She is kind to the elderly.  She wants to make good choices and tries harder than anyone I know to “be good”.  She has amazingly good manners and is almost always the first in the room to say “Thank you.  Please.  Excuse me.”  She can be kind.  She is witty.  She is insightful.  She challenges you to be better.  She is our precious child and a precious child of God.  She loves and is loved.  Purpose… you see what I mean?

It is indeed complicated.  But we will not be defeated.  She is worth the fight.  Her life matters.  With God all things are possible and that includes doing what is right for her.

We are not the only one’s who face challenging things.  We know many other parents who are fighting for their special needs children, many facing “The Devil’s Deal.”  So many of our friends are struggling in their marriages, with personal finances, with illnesses, with addiction, with depression, with heartbreak.  Please be gentle with others.  And remember, it may be complicated, but you don’t have to be defeated.

Much love,

Ah Lord GOD! Behold, You have made the heavens and the earth by Your great power and by Your outstretched arm! Nothing is too difficult for You.”  Jeremiah 32:17 NASB



8 thoughts on “It’s Complicated. (But)

  1. So glad you are doing this, Cindy. It’s always easy to become discouraged, and your blog exemplifies how we should ‘run with perseverance the race marked out for us’ (Heb 12:1) regardless of how difficult our own race is…to remain faithful that God can move miraculously, meanwhile using all the strength, intelligence, heart and resources He provides us to help or advocate for those who need us! Love and prayers for Bethany and you all!

  2. I’m so glad you took the plunge! I know you will continue to minister to and encourage so many other families in similar, difficult situations. I’ve been there, and I know that’s why I started blogging in the first place. To some how make sense of the impossible, the complicated. Love you, lady!

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