Friday, February 7, 2014

When The One You Love Develops a Chronic Illness

After Jesus crossed over by boat, a large crowd met him at the seaside. One of the meeting-place leaders named Jairus came. When he saw Jesus, he fell to his knees, beside himself as he begged, “My dear daughter is at death’s door. Come and lay hands on her so she will get well and live.” Jesus went with him, the whole crowd tagging along, pushing and jostling him.
~ Mark 5:21-24, MSG ~ 

Seventeen years ago today, my first beautiful baby burst into the world, crying and crowned with the red hair her father had dreamed of.  After years of miscarriage and infertility treatment, everything about the pregnancy, delivery and first few years of her life were magical.  I slow danced and walked the halls with her daddy for seemingly endless hours as we tried to move labor along.  I still remember that feeling of something akin to wet, hot, rubber being laid on top of me once she was delivered.  It was all surreal.

While she had some bumps in the road medically in her youth, I would tell you it wasn't much more than the average child faces.  When lung troubles in her toddler years could have become worse, they instead improved over time.  In fact, for many years of her life, she used to impishly brag to people that she was "the only 'normal' person in our family."

Then she turned 15.  She suddenly started developing some pain.  We saw the pediatrician about it, and he had a good, pedestrian-type remedy to the discomfort.  We followed through with it.  Then the pain began to spread.  In the interest of her nearly-adult privacy, I will withhold further details.  However, suffice it to say that we suddenly found ourselves repeatedly visiting a specialist for our last remaining "typical" child.

Special needs don't always set-up shop at birth

So many, many diagnoses put our kids in a chronic or disabled status well into their childhood.  Aside from the fact that EVERY person is only 1 emergency room visit away from becoming a special needs family -- tragic accidents can bring paralysis, childhood illnesses can suddenly go very wrong -- there are specific chronic and genetic illnesses that don't manifest symptoms until a child is older.  Illnesses such as Crohn's Disease, Lupus, certain types of Diabetes, various mental health issues, and whole hosts of other autoimmune diseases usually do not make an appearance at birth.  

When a child who once seemed otherwise "normal" suddenly has a serious diagnosis, it can leave parents with a unique type of shock and grief.  Worries about what this illness might mean to a child's future, with relatively little time to plan for that future, can bring some intense stress.

Of course, when we found ourselves in this position with our eldest, I had the distinct advantage of having been through multiple specialty groups and diagnoses with my younger 2 children.  Nevertheless, I would encourage parents receiving a later diagnosis of their child with the following:
  1. You are not alone.  Although it seems more isolating to me to have an older child diagnosed, because many of these disorders are so insidiously invisible, there are many other families going through this with you.  For example, an estimated 300,000 children in the United States have some form of Juvenile Arthritis*.  Your challenge is to plug into these other families walking the same journey for support.  The sooner you make those connections, the more empowered and less isolated you will feel.
  2. You will become even more of an expert on your own child.  Since birth, no one has known your child as well as you do.  Even if a diagnosis comes later into their childhood, you have likely advocated for your child with playgroups, schools or other outside activities.  This diagnosis is just another area where you will become an expert.  Take note of how it behaves in your child, what works, what aggravates things.  And right from the start, involve your child in their own care.
  3. Our children are fortunate to be born at such a time as this.  Although medicine is FAR from perfect, medical advances in this country, in this era have never been more remarkable.  I find myself repeatedly thanking God that if any of my children had to have their diagnoses, at least it is at this point in time.  What researchers know about DNA and the behavior of diseases these days is amazing.  We can be grateful for therapies and treatments that exist to help our children.
  4. Social media has become a FANTASTIC resource once a diagnosis has been received.  Not only have I formed friendships and found support as a mother through places like Facebook, Twitter, and other private groups, but these my children have too.  Depending upon the age of your child, they may find a great, supportive friend with the same diagnosis through chat groups on social media.
  5. Don't believe everything you read on the internet!  While social media is helpful and resources at the touch of a finger tip abound, not everything is reliable on the internet.  People will also freely share magical treatments that worked for their child.  That doesn't mean those same therapies will work for yours.  DEFINITELY do your homework, but filter what you read online with the understanding that it is not necessarily true or accurate. 
  6. Take heart!  It will get more manageable.  Notice, I did not say "easier", but rather "manageable".  Hospitals and doctors can be frightening, intimidating places to be.  You will find your own groove and baseline with this diagnosis.  Things will become more familiar to you, and fear of the unknown will not oppress as heavily as you gain some knowledge and experience.
  7. Your child still has a bright future.  Remember, your child has this diagnosis, it doesn't have them. Help your child to create positive goals and dreams for the days ahead, knowing that adaptations and accommodations are available if needed. 
Life can sometimes throw us for a loop when we least expect it.  Praise be to our God for giving us such lavish, good gifts to help us at times like these!

PRAY:  LORD, this diagnosis isn't what I expected.  Comfort my heart as I deal with the shock.  Grant me wisdom as we move forward.  And empower my child to be everything You intend.

~ Barb Dittrich 

*Taken from "Diagnosis and Disease Process: What is Juvenile Arthritis?" via the Arthritis Foundation.

2 comments:

  1. So true Barb. Epilepsy is another one of the illnesses that happen in toddler years, teens and seniors. When you think your child is good and then they develop it later in life it is so difficult to accept. You have seen them progress and do the typical development and then it is gone. Love the tips and all are good one. The biggest is one is how do you accept what is happened and how do you move forward and find joy again with your child?

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    1. Great points, Jen! This may not be true for all, but I almost think it is harder to have something (like "normal") then have it taken away, than it is to have never had it at all. That is what makes later diagnoses particularly challenging in my mind.

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