Not Every Battle Is Ours to Fight ~ 2 of 5

The Path That God Ordained ~ Not Every Battle Is Ours to Fight

by Debbie Taillefer

Most parents that have a child with any condition that involves research have had to advocate for their child.  This requirement is exaggerated in families that have children with a rare condition.  We are the pioneers in unexplored territory, along with hospitals, educators, therapists, dentists, pharmaceutical companies and researchers. Multiplied hours of phone time, writing, discussing, meeting, and working to be heard and understood is logged every day.  We labor to change laws, get assistance, raise funding and awareness.  We confront those who are negligent to act when there is no financial gain.  We have developed organizations, fundraisers, web sites, blogs, logos and written countless government representatives, agencies and drug companies.  We walk around loaded with binders chock full of reports, test results and evidence to back up our claims.  We are homemakers and professionals, Moms and Dads, Grandparents and friends, desperate to find answers and support.  Our task: to turn back the overwhelming tide of the orphan drug syndrome or motivate research, so there is knowledge necessary to adequately treat these children.

From the time my daughter was diagnosed with HPP, everyone involved had an uphill battle to fight.  This was when testing on my daughter really stepped up.  We knew that Hypophosphatasia, or HPP, wasz-Bottom of Form;z-Top of Form; an inherited metabolic bone disease that results from low levels of an enzyme called alkaline phosphatase (ALP).   Abnormalities in the gene that make this enzyme are defective, causing calcifications of bones.  However, the investigation she underwent to discover the problem was just the tip of the iceberg.  All researchers had to go on was a teeny paragraph in the medical books, with no searchable record of any individual that had survived a couple of months past birth.  How was this possible?  What was different about her?  What was her prognosis?  This impression that there wasn’t anyone else proved to be false, but at the time, this was all the data they had to go on.  This lack of information set in motion a steady march of geneticists, doctors, orthopedic surgeons, endocrinologists and so on, seeking answers so they could help us.  There were multiplied blood tests, x-rays, measurements, do this, try that, forms and endless questionnaires.  At what point do we make the decision that enough is enough?  Do we allow them to keep prodding, hoping they can help her or, if not our daughter, others?  These questions ran through my mind over and over again.  The battle was set in array and we were all drafted, like it or not.

One day, my daughter and I went to visit my husband who worked at a pharmacy.  We knew we had a dilemma on our hands when my daughter ran screaming and hid behind a shelf of products.  She had seen the pharmacist in his white coat and immediately thought that he was coming to put her through more tests.  After that visit I became a mother bear and took upon myself the task of saying to a host of people much smarter than me, “Enough is enough!”  They (and I) had spent endless hours doing research seemingly to no avail.  This decision was very unpopular with my doctor.  It started a flurry of calls and letters that left me feeling guilty that I was putting my daughter in harm’s way.  I even changed physicians to get away from the endless pressure.  However, in weighing the options, it seemed that the research was taking a far greater toll on my daughter than the actual physical condition.  I also found that because her pediatrician had so little to go on, the smallest infection or concern brought on major investigation over and above the norm, much of which was distressing and uncomfortable.  That pharmacy visit alerted me that maybe it was time to just back off and try and let her live as normal a life as possible.

The other predicament (at the opposite end of the spectrum in the advocacy war) was that to the uninformed eye (including my own), she “appeared” healthy.  There was no wheelchair, no cast, no walker, no telltale marks or surgeries.  She was somewhat knock-kneed, had no front teeth, had to go to the bathroom a lot, and at times had an awkward gait that was usually more pronounced when she was tired.  That could describe half the population of children!  Many assumed that she was just lazy and her teeth had been knocked out or they were slow in coming in.  One example I recall was when we would walk with other Moms and children to the park.  I would keep slowing down to coax my daughter up and down curbs or encourage her to speed up a bit and keep pace.  The other Mom would eventually say, “You know, you ought to discipline her, she is just being ornery and lazy.”  Soon enough, during these many encounters (especially on long trips with the bathroom issue), I found myself at times giving my daughter a rebuke.  Was the other Mom right?  Was she wrong?  Was I just making excuses for her, as others had accused me of?  We had no idea!  Later, I found out from Dr. Michael Whyte (a specialist who researches many rare bone disorders), that she “knew” she needed to be naturally cautious, because she was trying to protect her weak, soft bones.  We also discovered that she had half the muscular strength of a girl her age.  I remember feeling so guilty when I discovered that much of her weakness and “issues” were caused by her disorder.  Instead of defending her, I had actually been persuaded to rebuke her for something she could not correct, no matter how hard she tried.  As I became more knowledgeable, I found myself again and again explaining and defending that there really was a problem, even on an outing to the park!  Sometimes, it would get confrontational as some argued with me.  I felt so helpless from the lack of information I had to draw from, as I tried to protect my daughter (and myself) from accusations.  I remember one argument with a dentist that insisted that her teeth problems were from laziness and poor oral hygiene!  The best I could do was simply state that no, my daughter was not lazy nor being difficult and I didn’t know anybody that took as good care of their teeth as she did!  This is normal for her.  There were many symptoms that our daughter was reprimanded for, even from us, only to find out that this was normal for a child with her condition.  Our reactions ranged from being intensely focused on the situation and symptoms to being insensitive with her at times.  Our quandary was quite interesting.  We were trapped between halting a zealous bulldozer of folks determined to detail and quantify her problem, and struggling to convince a stubborn, donkey of a people that there even was one!

As we became more knowledgeable about HPP through our visits to Dr. Whyte, the need to clarify things intensified.  We now knew that HPP affected infants, children and adults, therefore we were becoming more informed as to what to expect.  We were given a list of possible symptoms that included short stature, frequent fractures, skeletal deformity, dental problems and osteopenia (thin bones).  We found out that the disorder can range from only mild dental problems that resolve with time, or could be as severe as being detected in the womb with deformities in an infant noted at birth.  In the course of Dr. Whyte’s testing, we found out that our daughter’s bone density was low – dangerous.  She could not be body-slammed or knocked down and she couldn’t fly off the end of a slide or jump off a swing.  If she sustained a break, it could take a very long time to heal, because the enzyme that metabolized her calcium worked slower than normal.  She couldn’t even carry a backpack to school in case she ended up with tiny fractures in her spine.  She couldn’t run, participate in certain physical activities, ride a bike or lift things very well.  She had daily struggles with exhaustion and bone pain.  Her calcium had to be closely monitored so that she didn’t assimilate too much.  If she absorbed more than her body could keep up with, it would be deposited in her joints or her kidneys had to process the excess, causing other health problems.  From the time she was 16 months old, she had no front teeth at all, just incisors top and bottom until her adult teeth came in.  Therefore, a lot of her food had to be cut up.  So our primary task became instruction of everyone that had any involvement with our daughter.

The real danger we inevitably faced was that this practice began to set us up for being defensive and overprotective.  Our interaction with others yo-yoed between zealous research and downright apathy.  Life became a frustrating pattern of explanations, defenses, education and protection.  It seemed like I was forever describing why she couldn’t do this or needed to do that.  Even a very basic game of tag or playing in the schoolyard was a long-drawn out process of instruction, meetings or question and answer sessions, because her bone density was low.  Every day the decisions ranged from: do we keep her in and not allow her to play, or do we educate everyone involved in how to play safely when she is around, making concessions in their games to include her?  There were no easy answers.  You can imagine what the teachers went through not having any provision through the system to get her the support needed, because having a rare disorder caused her to fall through all the bureaucratic cracks.  I eventually ended up home schooling, because I felt it wasn’t fair to the teachers, to my daughter or to the other children.  I even had exhausting battles in some churches, as everyone had a piece of advice or reproof on how I should be better handling our situation.  More than once, I was thankful for the quiet presence, hug or word of encouragement that spoke, “I am not going to judge you or fix you, I just want you to know I am here.”  I could relax with such people and not feel like I had to take my stance, draw my sword and be prepared to endure the inevitable combat to protect my child.

I write all of this to lay a foundation to help you understand my mindset.  This was normal life.  This was how I lived, breathed and functioned.  But what happens when you find yourself in a situation where this type of mentality is no longer necessary?  As my daughter progressed through the years, a miraculous thing began to take place.  When she was first diagnosed, she had a low-dangerous bone density and had half the overall muscular strength from head to toe of a girl her age.  However, a time came when all of this began to change.  This created a need for a transformation in our pattern of life and thinking.

As our daughter matured, her bone density began to improve.  It advanced so much, that her test results revealed her bone density to be at the lower end of normal and was expected to continue to increase.  For the first time since she was a baby, I was told to up her calcium to as much as she could take.  Her body was indicating that it needed more to store for the adult years and that she was not losing any more through the elimination process, which had been hard on her kidneys.  She was now running, riding a bike, skiing, playing most sports and loved physical activity.  She was deficient in all of these areas through lack of practice for years, but she made up for it in just the pure love of being active.  What many take for granted most of their lives, she was now given as a gift, and she wanted to enjoy it to the utmost!  I think she loves sports as much as those that play them well, and attends every game just to cheer friends on, if she can’t play competitively.  Her overall body strength increased to such a degree that she had greater strength in some areas than a girl her age, normal strength in most and decreased strength in only a couple of places.  As an aside, for those that struggle with children and physical exercise, swimming and Therapeutic Horseback Riding programs are the way to go.  Being on a horse actually exercises every muscle group with each movement the horse makes, without putting pressure on joints or bones.  Swimming also does the same and improves coordination.  I remember very clearly Dr. Whyte’s advice to me when she was little, “Make her a swimmer!”  And to this day, my daughter loves water and all activities related to it.  These improvements in her overall health and strength were calling for a change in our perspective, and identified the call for us to begin a maturing process of our own.

Now I must punctuate this last paragraph with some other facts.  My daughter’s case is not necessarily the norm for most children with HPP.  There are several that continue in the condition that she was in as a child or deteriorate and are in wheelchairs, suffering tremendously as adults.  I look upon it as a miracle, although I am sure the scientists have a different explanation (like her gene arrangement is very unique compared to most and allowed for her to grow out of it).  Either/or, from my perspective, both are under God’s control and are attributed to His purpose and design, whether He uses medical means or an outright miracle that cannot be explained.

My daughter was entering a new phase whereby this ingrained way of functioning on my part was becoming less and less necessary.  A change was essential.  There comes a time in the lives of all of our children (not just those with health concerns), when we cannot control their relationships, their going in and coming out, or their manner of dealing with the issues that face them.  Just as we became aware of our daughter’s emotional needs during the testing phase of her disorder, it was coming to the forefront again for us during her teenage years.  Now she was dealing with teachers, other adults, the opposite sex and other relationships where our involvement became overstepping.  This comes to all parents, but again, this stage is greatly exaggerated in the lives of those who have had such an experience as ours, especially with a child who was undergoing such an amazing recovery.

It became painfully clear for me, especially in her dealings with relationships.  None of us like to see our children get hurt.  All parents do what they can to protect their children and provide some degree of safety.  However, as I wrote earlier, my involvement in that area was magnified because of what we had been through.  So when my daughter entered this realm, I continued to do what I had always done, advocate, be involved in every detail, instruct and launch a defense.  When she was a child, I had to extend myself to make unworkable situations work, and make difficult situations easier.  But there are times when things are not meant to work, the situation needs to be difficult, and all the research, discussion and advocacy will not make it better.  It is meant to break.  It is meant to go to its worst end. My daughter was now entering many situations where my advocacy was not only unnecessary, it was actually causing her needless difficulties and misunderstanding.

Such was the situation between Peter and Christ when Christ was arrested.  Peter’s heart was to defend, protect and deliver his most precious, beloved, Jesus from an unruly, unjust and angry mob of attackers.  They were going to have to get through him to get to Christ.  I mean, we can sympathize with Peter and love him for his zeal and willingness to put his life out there for his Friend.  But it was not God’s plan to make this situation work that way.  It was intended to break, and Jesus was meant to be arrested.  It’s as simple as that.  Violent defense was not to be Christ’s manner of dealing with the world at that time.

In my situation, it all came to a head one night at ladies’ Bible study.  We were going through a particular chapter and I related to the group one thought that really struck me.  It went something like this: “Not every battle is ours to fight; not every wrong is ours to right.” (“The Uncommon Woman” by Susie Larson) As I went over it, one of the ladies present that night, leaned over and whispered to me, “When I read that, I thought of you.”  Now I have to admit that at first, my back went up.  However, her tone was so kind and sincere, that she caught my attention.  When we are corrected, our first response is a fleshly, defensive one, but if we pray and seek God’s direction, our spiritual response is to listen and heed with humility and grace.  I went home that night and asked myself some really tough questions.  Was I fighting fights I shouldn’t be involved in?

My husband is a Pastor and I see him struggle with these very dilemmas.  Where does my responsibility end?  When do I “let go and let God” (as the saying goes)?  Where do I leave room for God to labor, for things to break down and seemingly not work?  When do I walk away and leave room for consequences or suffering to do their perfect work, or to allow others to work through problems that wisdom might come?  How do I in my imperfect understanding, know when I am meddling like Peter, when he tried to prevent God’s goodness?  God allowed a just Man be arrested, tried and murdered, because He had such a larger purpose and plan to save many alive eternally, by allowing the death of One temporarily.

This is wisdom and it is not ours to contest.  Not every battle is ours to fight; not every wrong is ours to right.  Peter learned this from the loving hand of Jesus Himself, that the battle is His, and He does not always wage war in the way that we expect or want Him to.

“Then Simon Peter having a sword drew it, and smote the high priest’s servant, and cut off his right ear. The servant’s name was Malchus.  Then said Jesus unto Peter, Put up thy sword into the sheath: the cup which my Father hath given me, shall I not drink it?” (John 18:10-11)

Here was the lesson.  Or as Jesus instructed Paul, that it is hard to kick against the goad or that which is meant to prod you (even difficulties, hurt or tragedy) in a certain direction.  Instead of accepting things and resting in them, we tend to fight them when our survival seems to demand a battle.  So, through some very painful experiences, we started to relinquish the intercessor/referee role.  We began to duck out of the heat of some of her conflicts and allow seeming “wrongs” to occur, that were no longer our place to “right.”  Our little girl was now capable, literally, of standing on her own two feet and we needed to let her.  It was a tough admonition, but in the receiving of it, we are blessed to watch her blossom into a beautiful, intelligent, accomplished young woman, very competent in managing her life, under God’s all-wise and continuous care.

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