What we believe and what we hope

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"Our desire for healing holds a special tension: If we believe that God is powerful, if we believe in his ability to heal, what do we do with the uncertainty of whether or not he will? And if he does not heal when healing is desired, should we construe that as a reflection of his diminished love or power, an indication that something is not right with us, or simply a reality to be dealt with--nothing more? It's that "Will you?" gap that gets us--the aching, vacant space between what we believe God CAN do for anyone and what we hope he WILL do for us."  Leigh McLeroy

I had an incredibly hard week.  I knew my body would implode after Cincinnati, but I had no idea how bad it would be.  My EDS pain has been off the charts.  My reactions are back up, and my chest pain is worse.  My POTS symptoms, especially my blood pressure dropping when I change positions and a whooshing head crushing pressure when I stand, are frightening.  Most of all my heart hurts and any activity at all incapacitates me.  I cannot be a mom.  I cannot be a wife.  I can barely be at all. 

I have had a tension this week like never before.  After my appointments with the therapists I realized for the first time how much I really need to make accomodations in my life for the reality of my disabilities.  As the occupational therapist flipped through a catalog with all kinds of aides I felt terrified.  I visualize getting well and being well.  I simply cannot wrap my head around a progressive illness that may leave me crippled and dependent.  It's an exahusting pull between fighting and surrender.  It really is believing God can heal me and hoping He will but also realizing this pain may be my greater purpose and the calling for my life.  As I head into another brutal surgery I am grieving deeply. 

In the midst of suffering and disappointment we have seen some beautiful answers to our prayers and experienced continued love and support from so many of you.  I have never been so aware of how the Holy Spirit moves others to reach out at specific times to help our hearts.  Thank you for being obedient when you feel called to write a note or call to check in or meet a tangible need.  Know there are moments when I have literally felt like I could not move forward and a facebook message will come or a card or a gift, and it reminds me I am not alone in all this, and He is alive and working miracles in bigger and higher ways than I could imagine. 

These are some specific requests for this week and the coming days.  Would you please pray?

Dan and I have to travel to Cincinnati on Thursday for a required pectus surgery class at Cincinnati Children's Hospital.  The drive there is very difficult for me.  It will be a quick up and back trip.  Our class is at 4 pm on Thursday.  We will stay the night and drive back early Friday morning so Dan can work half days both Thursday and Friday.  Please pray for safety and strength.

Please pray our insurance company will come through with a pre-certification for the needed surgery this week.  My symptoms are worsening and my heart scan showed a progression of the compression of my heart and lungs.  For some unknown reason my instability all over my body has been much worse.

Please continue to pray about our housing needs.  My pulmonary function is so bad.  I know the basement is not a good environment for me to return to after surgery.  The stairs we climb to cook or do laundry or leave the house are steep and between my hip, knee, ankle, heart, lungs and blood pressure it is becoming a huge problem.  We need a house on one level, and we need to be considering my long term needs when we move.  In addition our family really needs to be on our own again.  Delaney needs a window and fresh air.  Dan and I need a window and fresh air.  We need to be able to just be ourselves as we learn to live this new kind of life instead of sitting here keeping our fingers crossed it might end. 

Please pray for my pain.  I am planning to explore adding a pain management team to my roster as well as trying to learn new ways to "think" about my all consuming hurt.  I have failed miserably this week at being kind and patient and loving.  The pain edges out everything good around me and feels like it is swallowing me.  In addition I have a large lump on my lower left abdomen.  I have had a stabbing knife there for over two weeks, but I have been trying to wish it away.  I had my sister touch it, and she confirmed it's pretty big and hard.  I am overwhelmed.  I have said this before, but I can only handle one crisis at a time.  I am terrified it is more endo or a hernia caused by all the inside incisions I have from other surgeries.  I know from experience a CT may not show anything and a surgery may be necessary to investigate.  I am afraid of going under any more.  I am more afraid of hurting like this long term with no solutions. 

I hope for healing.  I have to hang on to this even when it seems so impossible.  I have to fall asleep tonight imagining the cool night air blowing in my window.  I have to picture my husband snuggled beside me instead of sleeping on the couch so he can catch a tiny breeze.  I have to visualize cooking a healthy meal in my own kitchen and sitting around the table as a family with evening sun streaming in.  I have to believe I will be able to walk around the neighborhood without fainting or falling.  I even dare to hope I might run again and push my body to be strong like I once was.  I have to expect great things and allow for the possibilities.  Without this I would give up.  In Him I will never give up.  I believe.