Thursday, June 20, 2013

Giving and receiving as hope

Six months ago there was a little boy in Georgia who suffered a traumatic brain injury when a tree branch fell on his head at daycare.  His name is Tripp Halstead.  A friend sent me the link to his webpage early on and like hundreds of thousands of people I became a daily prayer warrior for this child and his family but especially for his mama.  She doesn't keep a blog but there is a website for donations, and she posts her heart on a facebook page dedicated to updating so many on Tripp's surgeries, treatment and slow recovery.  People from all over began to host fundraisers to help the family with the overwhelming cost of his treatment, to pay for modifying their house in hopes of Tripp being able to return home with his new special needs, to help compensate for Tripp's mama not being able to work so she could be with her son 24/7 and provide for all the unseen future demands this tragedy would place on the family.  

This past week there was a post about another Chic-fil-A fundraiser for Tripp that mentioned the Halstead's plan to share part of the money raised with another family in need.  There were some negative comments about how much support had been given to this family already and some other hurtful things.  I was crushed for Stacy.  All you want is for your life to go back to that moment before the accident, before the pain and disability, before it ALL and have your child and your world the way it was before.  Yes, the love of others is a blessing, but the responsibility that comes with so much attention and prayer and support is sometimes a burden added to an already unbearable load.  With it comes the secret shame of taking and taking and it still not being enough.  With it comes the pressure of wanting to write a thank you note for every single gift or respond to every comment or email, but you just can't because you can barely move through the minutes and you worry someone will think you take it for granted or expect it or don't appreciate their sacrifice.  There is scrutiny about your every move.  People see you out to eat and think you should be eating peanut butter and jelly if you are taking donations.  (In reality someone probably gave you a gift card to go out so you can for a moment be a couple or a family and remember what the real world looks like.)  If you buy a new shirt or shoes or get you hair done there is guilt and then someone actually has the nerve to say something to someone else that makes it way back to you, and it stings like salt in a wound.  And for all the good, the incredible good, that has carried you through the most insane kind of loss you hear the negative voices loudest of all, and they wound.  There are days you want to shut it all down and hide under the covers.  Being out in the open and vulnerable with everything is one of the bravest things someone can do and admitting what you, your family and your child needs are more than you could possibly provide on your own requires even more courage.  

Our family has been blessed for years by giving and receiving.  The medical bills are never ending, and we live on just enough.  No savings.  Painful juggling of dollars and cents until the next pay day.  Still, we never go without.  Just last week a gift came, and it floats us.  It helps us hope the trip I need to my neurosurgeon two weeks from today might happen.  We can't really plan for it though, because I have a CT for my head and neck and a visit to my gyn surgeon in between.  We live in today.  We have enough today.  We suffer gratitude today.

I'm telling you all this because there is a sweet girl, Haley, who I wrote about a month ago.  She needs her own community of giving.  She has been suffering for over ten years without a true diagnosis.  Her family has sought endlessly for some answer to her pain and suffering.  I know in the truest way what lengths you will go to to find any kind of help when your daughter is wasting away.  I have talked to her mom over the last month, and I could hear my voice coming through the phone.  You can't sleep or eat or think until you save your child.  Haley was finally diagnosed with a Chiari malformation and Ehlers Danlos causing severe cervical instability.  She will be having surgery with my neurosurgeon in Maryland next Wednesday.  This is not the beginning of a road for the Chico family.  The costs associated with this surgery and recovery are astronomical.  Even with insurance it becomes too much for a family who has years of medical bills on their books already to do alone.  They need help.  There is travel and hotels and food and scans and medications, and really, it is impossible except with love.  I helped create the blog to help Haley and Amy tell their story and also a facebook page for quick updates.  I added a paypal account "donate" button linked to the Chico family account so people can help with the greatest need right now.  Please pray for this dear girl.  Please pray for her broken body and her heart and mind heading into next week.  Please pray for grace and strength for her family.  This surgery is a life saving surgery.  It is a life giving surgery.  Thank you for being part of this hope for Haley.  

"Now the full number of those who believed were of one heart and soul, and no one said that any of the things that belonged to him was his own, but they had everything in common. And with great power the apostles were giving their testimony to the resurrection of the Lord Jesus, and great grace was upon them all. There was not a needy person among them, for as many as were owners of lands or houses sold them and brought the proceeds of what was sold and laid it at the apostles' feet, and it was distributed to each as any had need."  Acts 4:32-25

"Give, and it will be given to you. Good measure, pressed down, shaken together, running over, will be put into your lap. For with the measure you use it will be measured back to you.”  Luke 6:38

Tuesday, June 11, 2013

Come home

For the first time in my life I might know a teeny bit how it felt. 

My parents are a world away.  A cryptic email came this morning mentioning "great difficulty."  There is no way to really get to them.  I could call and call and call their phones, but they would not answer.  I do not know where they are sleeping tonight.  If I needed them I could only send a message into cyberspace and hope they would read it.  If they wanted to come home today they could not. 

I remember years of my life when my parents could not get to me.  I was wounded and broken.  I withdrew from a prestigious woman's college where I had an elite scholarship, because I couldn't move anymore.  An avalanche of life had begun crushing anything and everything I believed about God.  This began with huge life changes like two brothers adopted from Romania, old pain from my parents younger selves being revealed, an ugly church split, my older sister who slept on my floor every night getting married and moving away, isolation from all the people I had known most of my life and my parents and siblings moving to Ohio.  Trauma was the tipping point in a seventeen year old girl living on her own and completely alone.  I was a sophomore in college, working two jobs, a Young Republican, active in Right to Life, active in the college's Baptist Student Union.  It's true one storm can blow everything away.  The younger you are and the more sheltered and na├»ve the worse the damage will be.  I was decimated. 

The story of the almost year between when my world blew up and when I called my parents to tell them is too graphic for this heart to retell.  I know on their side they were thinking maybe I had simply changed my mind about schools.  I did transfer to a larger state school the next semester.  They were dealing with new jobs, special needs kids and making a new life.  I had managed to keep working and paying my rent in my basement apartment.  There wasn't really anyone left in my life to be accountable to so my slipping away was easy to hide.  When we did talk I know I told them what they wanted to hear to make it easier on them.  Still, they would call some nights, and I did not answer.  They did not know where I was sleeping or if I was really okay. 

When I finally told them, because my sexual assault counselor told me I had to, I know it was horrific for them.  Can you imagine the guilt a parent has when circumstances spiral to one of your worst fears being realized for your daughter?  My dad got in his car and drove all the way to our home town.  We met at an Econo Lodge.  We got down on our knees, and he prayed with me.  Then he asked me to come home.  There was nothing in my heart that even moved toward making that kind of decision.  Ohio wasn't home.  I wasn't Monica anymore.  I told him I couldn't.  I hugged him and said "goodbye" and "I love you" and went back to my dorm room to cry myself to sleep.  I was a sophomore in college.  I was a binge drunk.  I was a whore.  I was a blasphemer.  I was eating with the pigs.  I changed my major to sociology.  I became a feminist, a humanist and a liberal.  Still, when I was alone at night and could not numb myself any longer I could hear my Father calling my name. 

Today I know what it must have felt like. 

I just want them to come home. 

I want to say "I'm sorry" for the million ways I hurt them.  I want to forgive them for the million ways they thought they were doing what was best that hurt me.  I want to show them grace.  I want to honor them for their faith and courage and service.  I am like them in many ways.  I can hear my girls on the phone someday saying I was too involved in other's lives, praying too much for people we don't really even know, giving to people when we don't have "enough" ourselves.  I've faulted my parents for these things before. 

I am so much like my father.  I see the world through a theological lens I will never be able to leave behind.  I hope it's not theology.  I think it is Jesus.  I will always be digging and searching and maybe too serious.  I will always need to retreat from social situations and need time to be alone to be okay.  He is a lover of Grace and truth seeker.  He is a writer, an early riser to seek the face of God and carries the lives of hundreds of families in his heart. 

I am like my mother.  I will learn of a friend of a friend who is hurting, and I will pray and ask you to pray.  It is annoying to most and enduring only to those who know how sincere we are.  I am sometimes an optimist like her.  I used to call her house a glass castle.  I understand over these last years it is a coping mechanism for making it through really hard things and also a ruthless trust in a good God no matter what.  She is a journal keeper, early riser to seek the face of God and carries the lives of hundreds of families in her heart. 

I want them to come home. 

I want them to know after thirty-seven years an email from a far away land healed more in me than all the therapy I've ever been through. 

I love you dad and mom. 

Come home. 

Father, bring them home. 

Monday, June 10, 2013

If you don't have your health you don't have anything

I used to say this all the time.  In some ways it is true.  When you are chronically sick and in pain life is overwhelmed by a shadow that will not move.  I know God has changed my heart and mind through the long years, because I have surrendered to the truth I may never be any better than right now and in the same breath I fight because I refuse to lose hope.  I also have learned to focus in on blessings in the midst of my own suffering.  There is almost always a light shining near me no matter how I hurt.  I feel horribly this morning.  I could name the many ways my body is screaming at me, but some of them would be redundant to other posts and some would just gross you out, so I won't.  The point is as I sit here in pain that is my day I hear Danica playing music in her room and pretending with her stuffed animals.  My pup is snuggled beside me.  I hear soft rain outside on the deck of our home with sweet birds chirping from the trees.  Laney is still peacefully sleeping in her bed.  My faithful husband has gone to work at a job God has given him for over five years.  So much grace surrounds me I can scarcely breathe.  I have everything.

I'm sorry.  It has been weeks, maybe even months, since I promised a health update.  I am finding it more and more uncomfortable to talk about this stuff online.  Still, so many of you ask and email and message me to know how to pray and support our family during ongoing crisis.  I am reluctantly going to try to update in general terms what is on our plate right now.

Over a week ago I went into my monthly flare of endometriosis pain.  It has been getting worse month to month.  I have been managing with days in bed, torodol injections, dilaudid and many tears.  I have an appointment with Dr. Falcone on Friday, June 27th.  He is the surgeon at Cleveland Clinic who removed the endometriosis from my bowels after my hysterectomy.  His office has my number on a sticky on the phone to call if anything comes open or they could work me in sooner.  It is time to let him go back in.  I have a remaining ovary and the pros and cons of having no hormones with EDS are very clear to me.  The past months have made me sure whatever increased disability is caused by cutting off all hormones increasing my bone loss and decreasing collagen production is a fair price to pay to have any relief from this pain.  Endometriosis is an insidious disease.  At stage IV, it is as aggressive and wide spread as cancer, but besides operating over and over again which can actually spread the cells, there is still very little treatment.  I am hanging on for my appointment to make a surgical plan.  The colorectal surgeon I saw last month wrote notes to Dr. Falcone about his department dealing with my rectocele.  This is my large intestine prolapsing into my vaginal wall.  I am hoping these surgeries could be done together.

Thursday I ended up back at my general doctor because my belly became so distended and my pain even worse than I had been dealing with.  I had diarrhea and nausea.  I was sent for a CT and there was free flowing fluid in my pelvis.  Because of the pain and remaining ovary it made sense it was a burst cyst.  My wise doctor also wanted me to do a cdiff sample.  My immune system is so weak I am constantly treating an infection of some kind.  The monthly wide spectrum antibiotics could surely have cause a cdiff infection.  Saturday I continued to have stool symptoms and pain but my swelling had gone down.  I was exhausted and my bowel sounds were so loud they made my family and I laugh.  I took a cdiff sample to the hospital so the word is out on this.  I am still not venturing far from the bathroom or eating much.  My abdominal pain is sharp and constant.  All this inflammation and pain causes many of my other symptoms to flare.  I have had increased instability, particularly in my neck and back.  I've had increasing headaches.  I know everything about my body is a domino effect.  I try to document my issues without becoming too excitable.  There are always little things all over my body.  A spot on my clavicle that will not heal doesn't seem worth mentioning but when the doctor asks what is under the band aid she instantly thinks to test for MRSA.  This is one of the culprits of my enduring antibiotic use.  My actual rectal issues have improved greatly with the special medicine from the Cleveland Clinic doctor.  I thought the tear was pretty much healed and then this awful bout of diarrhea came and now I am in the same place it seems.  When you see me and think I look good please show me a little grace because underneath my strained smile and biting my cheeks I have so many things hurting me.  My joints are ever popping and cracking.  I am dizzy and have trouble remembering words.  I am tired.  I am bone tired from never ending pain from so many origins.

Are you waiting for good news?  Remember my appointment with Dr. Grubb, the cardiologist in Toledo?  The new medication for my POTS symptoms has helped so much.  I have the least amount of POTS symptoms I have had in years.  Praise!  I attribute the really good weeks I had last month specifically to Bystolic.

This scratches the surface of my health, but it is the top issues this week which I always say is about all we can focus on.   It's like putting out fires.  

Many of you have asked how we are financially with the continued strain of all these medical appointments, procedures, scans, trips, etc.  The truth is we are back to a tough place.  We had help from Rocktoberfest for several months with our mortgage.  Without this love we would not have been able to pay the deductibles we faced.  My claims for this year without any major surgery are already over $65,000.  I get bills I cannot even begin to pay.  I owe my hematologist money that needs paid before my next appointment.  (I have needed expensive iron infusions this year).  I was dismissed from my gastroenterologist's practice for an unpaid bill.  A new bill for over $2,000 for the MRI I had out of network in Maryland just came last week.  When I am as sick as I have been with pain I shove all this into a drawer beside my bed and we balance on manna.  Dan brought a check for $30 home from church yesterday.  A family who doesn't have much still remembering us and our struggle.  It brought me to my knees.

A need in the next few weeks is a trip we are planning to take to Maryland as a family.  I have an appointment with my neurosurgeon, Dr. H, on Friday morning, July 5th.  Before this appointment I have to have a new CT of my cervical spine to assess fusion, stability and some other markers of healing.  I was asked to participate in a long term research study of patients with EDS and craniocervical instability.  The director is Dr. Clair Francomano, the foremost geneticist in the study and treatment of Ehlers Danlos patients.  Dr. H is a co-director.  This study plans to follow the participants for as long as 25 years.  There is no compensation for participating in the study.  Having a scan ordered and a physical appointment with Dr. H is particularly helpful for me at this stage because of my symptoms.  Although I will not be charged for the office visit, the cost of travel and the portion of the scan my insurance will not cover is my responsibility.  People may wonder why with everything else going on would I consider doing this.  The answer is clear.  Our hope remains.  When I see my Danica suffer her continued pain I know I must do this.  I receive emails from moms who have sat and read the entire archives of this blog looking for answers for their own children.  I must do this for them.  I must do this for my grandchildren who may inherit this genetic code.  It's important.  I make plans to do all kinds of things to try to help in the world and cancel because my body betrays me, but I must do this.

If you want to help I have humbly added the "Donate" button back to the top of this blog.

Most of all you have asked how we really are.  You lovingly ask about our hearts.  I have many unanswered emails, and I pray you will forgive me for only focusing on what I can do in this pain. The girls are home for the summer now, and I am needing to push myself more physically to care for them throughout the day.  When Dan gets home he must take over until they are tucked in and we can rest and begin again.  Remember how discontent our hearts often were at the beginning of this journey, especially when summer would come and the world of facebook and photos of vacation and the zoo and concerts and swimming and a hundred other fun things would flash across our screen reminding us of what we could not do?  There is now very little sadness left.  It is a beautiful thing to find contentment in this.  We still feel as if our home is a vacation.  I wish you could hear our prayers of gratitude every single day for this place.   We don't take a moment for granted.  We have found a true joy in watching those we love live out loud while we have a different kind of life altogether.  This is grace.

Thank you.  As always we covet your prayers as the day to day is grueling.  We hold on to the perfect faithfulness of God and the Hope that will not disappoint as we move forward and do the next thing. We love you.

Oh, and if you are healthy today.  If you feel well.  Don't take it for granted.  Do something good.  It is a gift.

Sunday, June 9, 2013

Tao Te Dan (A video tribute to our superman)

"The future is something which everyone reaches at the rate of sixty minutes an hour, whatever he does, whoever he is.” C.S. Lewis

He is not a philosopher.  He is a self described simple man.  I heard him on the phone last night talking to a friend.  He was explaining his way of life.  "I get up in the morning and do what needs to be done.  This is my purpose.  I don't reach back into the past, and I don't look far into the future.  God has a plan for me and today is the plan . . ."

He is character.  He is faithfulness.  He is love.

Husband of the hour.  Father of the hour.  Husband of the day.  Father of the day.  Husband of the year.  Father of the year.

And he is ours.

(Cutie Patootie videos from the girls at the end!)