Monday, August 12, 2013


So what should we say about this? If God is for us, no one can stand against us. And God is with us. He even let his own Son suffer for us. God gave his Son for all of us. So now with Jesus, God will surely give us all things. Who can accuse the people God has chosen? No one! God is the one who makes them right. Who can say that God’s people are guilty? No one! Christ Jesus died for us, but that is not all. He was also raised from death. And now he is at God’s right side, speaking to him for us. Can anything separate us from Christ’s love? Can trouble or problems or persecution separate us from his love? If we have no food or clothes or face danger or even death, will that separate us from his love? As the Scriptures say,

“For you we are in danger of death all the time.
    People think we are worth no more than sheep to be killed.” 

But in all these troubles we have complete victory through God, who has shown his love for us.
~ Romans 8:31-37, ERV ~ 

It's easy to feel defeated when raising a child with special needs.  It can all begin with feeling the discouragement that comes from having taken meticulous care of ourselves when we were pregnant with our child, only to receive a serious diagnosis after birth.  We might follow strict routines for treatment and care, yet still encounter serious setbacks with our child.  We may deny ourselves vacations, dinners out, and all of the other niceties of life that others take for granted, and sadly, financial woe knocks on our door in spite of our fiscal responsibility.  Being an engaged, proactive, loving parent might be our constant pursuit, and still the critics have their unwelcome insults directed at us.

It's easy in all these frustrations to forget who we are, who we belong to.  That's what happened to our family when our son developed post-traumatic stress disorder (PTSD) at 5 years of age.  I have shared the story many times before.  It all started when he developed his first life-threatening internal bleed.  I gave him an IV infusion of clotting factor and called the hematologist.  They instructed me to take him to the emergency room right away.  When we got there, he received 2 more IV pokes, 1 for a blood draw and 1 for the insertion of an IV catheter where he received fluids.  At 11 PM when he had no further symptoms, they discharged us from the hospital.  Exhausted and stressed, we returned home only to encounter more bleeding early the next morning.  I infused again and called the doctor back.  This time, our son was admitted inpatient to our Children's Hospital HOT Unit (hematology/oncology/transplant).  For the next 24 hours he received at least 8 more needle pokes for IV catheters, blood draws, radiological tests, and IVs that had to be replaced.  He was a mess.  He was so distraught that he was crying out for help, "Dad!  Make them stop!  You're supposed to be helping me!  Make them stop!"  It still breaks my heart to recount the story.

After his release from the hospital, he was never the same.  Infusing at home took both his father and I to accomplish.  Our son, who had once been cooperative and easy to infuse suddenly became combative and distraught in increasing measure.  We sought help from our social worker, the hematologist, and spent years with him in psychotherapy.  Medication entered the picture.  One practitioner prescribed a drug that made him violent and that put him at serious risk with his bleeding disorder.  Thankfully, after we fired her, we found an excellent psychiatrist who put him on a regular regimen with an anti-anxiety medication that made a noticeable  difference for him.  Yet, even after years of medication with a psychiatrist and things like EMDR, hypnosis, and other therapies with an excellent psychotherapist, he could not overcome his battle with needles and anxiety.  Defeat wore us down.

Last November, we reached a point where my husband and I had tried for 90 minutes to get an IV in our son unsuccessfully.  We ended up taking him in to our Children's Hospital where the hematologist was indignant.  She threatened to put our son in a mental hospital and treated us as if we were permissive parents who hadn't done everything possible to help our son.  I was angry, wounded and discouraged all at the same time.  At that point, the team called in a psychologist who had worked with our son the previous spring when he had been hospitalized for a different sort of life-threatening internal bleed.  This psychologist set the record straight with the hematologist and coached us through the entire ordeal.  With our son finally infused, we agreed that it was worth the trip to drive 60 miles round-trip each week to have him help us with our son.

God heard our years of crying out for help and granted us wisdom in turning the corner with this stubborn dilemma.  At first, we saw this psychologist a couple of times in 1 week, so that he could talk our son through the infusing.  Ironically, articles began coming out shortly after our initial visits talking about the effectiveness of the type of treatment our son was receiving, Cognitive Behavior Therapy (CBT).  After we succeeded through those first few infusions, we began having weekly appointments.  Each time, new goals were set, anxious thoughts were challenged, new thought patterns were learned, and consequences were established for not meeting goals.  It wasn't always pretty, but it was effective.  Eventually, the visits were every other week.  And then the mother lode of all goals was set this past spring -- self-infusion.

While our son could not reach the goal of infusing himself by my birthday in May, he was making unbelievable progress.  An 8 year battle with anxiety had drastically improved, taming this monster down to the level of a nuisance rather than the original disruptive power it had once wielded.  We pressed on through the summer months, and to our delight, our son began regularly, albeit nervously, self-infusing.  It was beyond our wildest imagination.  But there was 1 hurdle still to be conquered.  

Our son has been attending hemophilia camp for 4 of the last 5 years.  At these camps, they not only teach boys to self-infuse, they reward them when infusing at camp for the first time.  This was a much-coveted, yet elusive reward for our son.  It would take unprecedented strength and courage for our son to continue this self-infusing at camp.  Even up to the day we dropped him off this year, things were looking uncertain.  I was concerned that the doctor and nurse there who didn't know him were already pushing too hard at check-in, which could easily have derailed his success at camp.

Amazingly, I had the joy of picking up our son and discovering that he was more than victorious over this monster that harassed him for the past 8 years.  Praise God!  He did it!  He self-infused at camp!  He finally earned his "butterfly award"!  This may not seem like a big deal to some, but I don't know how many of us would actually have the fortitude to administer our own IVs every other day.  For those who understand how PTSD and anxiety can grip a person, it is a major deal.  People like our son often become very ritualistic and rigid in their requirements as a means of controlling their disorder.  The lighting, room, noise, all need to be perfect to diminish the angst.  But he overcame all of that by the power of the Holy Spirit!

I share this lengthy personal story with you to encourage you.  Don't give up!  Just as Joseph was imprisoned for years, and David waited on God's timing to become king, the Lord has His eye on us through all life's discouraging delays.  It may have seemed like a lifetime to gain this victory for our son, but we were never apart from God's grip.  How miraculous it was to find our helpful psychologist and so dramatically turn the tide in only 8 months!

For years we walked by faith.  Now we have been blessed by that faith becoming sight!  No obstacle is too big for our God!  The remarkable boy we knew was locked inside that anxious wrapper all these years emerged completely victorious.  If it can happen for us, it can happen for you too.

I do not want to imply that this battle is ended.  Our son will beat back this monster of anxiety in days to come.  Yet, he holds the confidence that the Lord has equipped and enabled him for the battle.  He has become familiar with the stronger part that resides within him.  He knows that he is more than a conqueror through Christ.  And he is so thankful to the psychologist who not only helped orient him towards that ability, but also taught him to dispute those heavy worries.

What does your child need to conquer today to become completely victorious?  Healing often comes in ways we didn't ask, think or imagine.  And whether we can see a change or not, God is always at work around us and in the hearts of the willing.  Maybe that victory is only a thought away.

PRAY:  We praise You alone, Lord, for our victory comes in and through your awesome power!  Thank You for every obstacle you help us to overcome.  Holy Spirit, take every thought we have captive, and make those thoughts reflect your truth instead of our own discouragement.  Thank You for showing us that there are brighter days ahead.


1 comment:

  1. You've encouraged me so much today! What a battle- what a journey- What an AWESOME GOD! I get so "trapped in the journey", the battle we're facing, I forget to remember, God will bring that day of victory- someday. We can rest in His promise. So very glad for you and your family! hugs