Dear God…

I believe that you are in the business of miracles and let me tell you, my family is in need of one.  I know we have probably been given more than our fair share of miracles, but might you spare one more?  All I have to do is look around my life to know that it is only by your grace that we are a family of seven.  Babies born weighing between 1-2 pounds are the quintessential miracle.  I watch my 27 week preemies getting ready to go to 1st grade and I know that only you could have gotten us this far.  I get it God, I know you have blessed us beyond measure but as much as I hate to say it, we desperately need you to intervene for us again.

You see,it is our Keyan God. No,she isn’t sick this time….that is a miracle in and of itself.   The doctors in Cincinnati don’t have a lot of answers to her big questions but they have been able to tweak her TPN nutrition and change some meds so that she isn’t constantly getting sick.  She has had a good summer overall despite a few pneumonias and other neurological stuff.  She has been in the pool, ridden her new bikes, gone to camp, been boating, played outside, and has really enjoyed feeling better and having a little more strength.  No, it is not a bug this time but it is just as scary.  We were notified last week that Keyan would be loosing her Medicaid.  It is a long drawn-out story. One that involves Paul’s income and a zillion other reasons that are as clear as mud.  Not only is it ending, but it is ending 13 days from the time we received the notice.  No warning, no “this may happen”, nothing except a very confusing letter a mere 13 days before.  You know that this is not the first time we have dealt with this but this is as real as it gets.  The letter states that her case closes September 1st.  Period.  No other options.

I know you are aware of all that we have been doing since that letter arrived.  I know it was you who cleared my moms schedule so that she could keep an eye on the kids during my hours on the phone and my numerous trips to different agencies.  I have written letters to everyone that I can think of.  We have appealed to our primary insurance, we have contacted all sorts of government officials and done hours of research.  It really seems that a child like Keyan is bound to fall through the cracks.  There are provisions made for seemingly every other set of circumstances.  If Paul and I were paying child support to another child, she would be covered.  If Paul and I owned rental property, she could be covered, if she was severely emotional impaired, she would be covered.  Dear Lord, I could go on and on.  The advice that we are getting is for Paul to quit his job, for us to get a divorce, to put our precious daughter into the foster care system, or to lie on our new application for Medicaid.  Even though these are all real options, you know that none of them are options that go along with our values and beliefs.  This seems so ridiculous!

I know that you also know what this means to Keyan and our family.  We will loose our nursing.  The very nurses who have saved her life at times and who stay on top of her health needs in order to prevent a major illness and hospitalization.  Without them, it falls to Paul and I.  How will we watch her all night?  How will we hear the subtle changes in her lung sounds that indicate the beginnings of pneumonia? How will we continue her quality of life?  How will we keep her safe night after long night? How will we care for our other four miracles and give them the time and attention they so deserve?  How will we foster a marriage that is already pushed to the limits of no time for each other? How will  we have a life beyond the living room?  How will we afford her care, her equipment, her medicines, her IV nutrition, her supplies, and copays?  Not to mention keeping a roof over our heads and food in all of those little tummies!

We have applied for two different waiver programs.  We go in the coming weeks for cognitive assessments and long medical exams in the hopes that she can qualify for these rare programs.  They are our last hope and I am not going to lie, the hope is very slim.  They have 45 days to let us know the outcome.  Forty five long days. But I will fill out the pages and pages of applications.  Paul will fax the pages and pages of medical releases.  We will do EVERYTHING we know of to keep our family safe.  But we are tired God.  Tired of banging our heads against the wall.  Tired of getting the run around.  Tired of being told nothing,  Tired of feeling like our options are ending.  Just plain tired.  We have always tried to do what we thought was best for our family.  It makes me laugh that Paul’s income is too high for us to get help. I am so grateful for that income, but it doesn’t feel like much when you are covering a family of seven.  The truth is really that we could never make enough money to afford Keyan. 

Oh, I know that life isn’t fair, but God, it really does seem like we are being punished for working, staying married, caring for our kids, and having some morals.  It seems like no one is looking at Keyan as a little girl,,just a piece of paper with a case number that has closed.  It seems like we have no where to turn.  I would love to say that I believe you have a greater will in this whole thing, and logically, I really do, But this is the part of faith that is SO hard.  To be a fighter, with a battle that has ended before you were willing to give up is hard.  To believe that you will meet our needs when they suddenly seem so great is pushing my faith to new limits.  To place my endless worry in your hands sounds so appealing but I can never truly let it go.  God, I want your good to come out of this.  I want you to be glorified when this is all said and done.  But I am going to be honest, I want it to go away even more.  I want to know that my family is going to be ok.  I want to know that Keyan will be alright above others seeing you in this situation.  I know it sounds selfish.  I know it isn’t right, but God, this is my heart….broken and crying out my reality.  Please won’t you listen and pass out one more miracle for a little girl that deserves the world?