Metamorphosis

Nadiya and Anastasiya- Nadiya's birthday party

          Nadiya recently turned 8 years old..  We have been managing her condition for that long now. Even before we knew something was wrong we were still managing abnormal screaming and discomfort that we now believe were spasms.  We were also realizing that milestones were not being met.  Today it seems I am coming across many families who are newly realizing their child has a condition, disorder, syndrome, or disability that they will be managing.  These are the families who are drowning.  They feel alone and they are just beginning the mourning process.  Some are even still in denial.  I see the greatest loneliness in those who are at this stage.
          So many of these families want help but are not able to reach out.  I felt that way when we were going through this.  I used to feel that if I saw children worse off than Nadiya that it would be frightening and depressing.  At the same time I felt that if we saw those doing much better than Nadiya we would be frightened and discouraged.  There is a process that a family goes through where they must eventually accept what is happening. I remember searching for similarities in other families and there were none.  No one was talking about any of this and I felt alone. I needed someone to share some hope but there was no one freely giving this valuable commodity.  We had to find hope in Nadiya and in the beginning that was so very difficult.

         There is a phenomenon that does occur with the proper conditions.  We change and adapt and eventually we even embrace what life brings us.  It does not start out like that.  I think the beginning is the most terrifying and vulnerable time.  As parents we lack education and experience in dealing with a child with a disability.  I have even seen parents with children who have mild speech and language problems struggle with the reality that their child isn't "typical" and will need support in school.  I think it is our nature to want a "normal" experience.  It is what everyone plans for and it is what our future dreams are based on.  When something happens to change that it can be devastating to have to rethink a future.  It can get better even when you think that can't be possible.  I personally have experienced this transformation in my life.  Like so many other things in life it just happens and natures takes its course. 

      For years my older, "typical" daughter, Anastasiya, has hunted in the community common space among the milkweed plants in search of Monarch caterpillars or their eggs.  Each warm day while we waited for Nadiya's bus she crossed the street and eagerly examined the leaves of the milkweed but found nothing.  Then on a hot September afternoon she excitedly announces that she had found some of these coveted creatures after almost four years of searching.  She scooped the colorful, soft, plump, and squishy caterpillars into her hands their sticky rows of feet clinging to her, confused and searching for the food she took them from.  She picked some milkweed  for them to eat and joyfully showed the bus driver what she found as Nadiya arrived.  Nadiya looked at the bugs and shook her head "no".  There have been times in the past where she saw the caterpillars, frogs, praying mantises, and other critters that her sister collected and signed, "don't like"  Just saying no wasn't too bad. 

Monarch Caterpillar

      Anastasiya put the 4 Monarch caterpillars in a special critter carrier tank with a screened lid.  Every day she made sure the bugs had plenty of milkweed plants to eat picking it fresh.  The caterpillars grew quickly consuming the entire milkweed Anastasiya fed them until they were large brightly striped creeping creatures.    
       The raising of a caterpillar is an amazing thing.  We have done this many times before but never with Monarch caterpillars.  Caterpillars are most vulnerable when they first hatch and while they are growing through their earliest phases.  This is when they are eaten by predators or fail to grow and they die.  When they get bigger it is always exciting because we know they have a better chance of making it all the way to the chrysalis stage. Many people are uncomfortable with these bugs.  They find them to be creepy and strange.  My husband isn't a great fan of them but tolerates them in the house because of Anastasiya. 

Monarch Chrysalises
 

     It fascinates me how the bugs realize they have eaten enough and they position themselves in a row on a stick to form their chrysalises or cocoons.  The caterpillars hid within the secret cloak of the chrysalises and began to change.  Slowly they went through an amazing metamorphosis completely transforming.  After a few weeks the chrysalises began to turn black and slowly reveal their secret inside.  We could see intricately marked wings folded inside.  It was clear that they would emerge soon.



The chrysalis becomes transparent

      

       It was September making these Monarch caterpillars the fourth generation of the season.  Genetically these bugs would be different than the three generations that had hatched through the summer before them.  The first generations are breeders.  They go through the typical caterpillar to butterfly life cycle creating the next generation.  Generation four is different.  Genetically their makeup is a little unusual.  They will be migratory and fly a long distance to Mexico or California or even the Caribbean.  They will live for many months instead of weeks surviving the harsh winter in a warm climate.  This will ensure the future population of Monarch butterflies. 

The newly hatched Monarchs

      Very soon the chrysalises began to hatch.  A wet newborn butterfly emerged from each.  They clung individually to their broken chrysalises and dried their wet and wrinkled wings out for a few hours.  As their wings were drying the butterflies slowly pumped them filling them with blood and smoothing out the wrinkles from being folded in the chrysalis.  It was interesting to watch.  Once they were dry and ready to fly Anastasiya and her friend set them free.  At first they clung to her almost afraid to leave the comfort of her care but eventually they flew away.  We imagine they began their long fascinating migration to Mexico just knowing what to do, following their destiny. 
      

Anastasiya releases a newly hatched Monarch

       I couldn't help but reflect as I witnessed this process  that our family had undergone a transformation of our own.  We had survived and we became stronger because of it.  There comes a moment when life isn't all about the difficult but it can become more about the good things.  We have our frustrating moments and we have our battles that we constantly must fight but thorough it all we have found our place in the world finally.  We can see the joy in Nadiya's small triumphs.  We can find the comfort and peace of being able to manage her seizures with the Ketogenic diet.  We embrace the mission we are called to as her voice.  We try to help others who are in our position.  We can hope and rise above despair.  Where once we carried a huge heaviness, now we can fly away.  I saw this connection with the hatching of these Monarchs.  As parents of special needs children it can be easy to feel defeated.  We are often tired but there is an adapting that takes place.  We become better suited to manage this life that we did not choose for our families.  Sometimes it can even feel beautiful.  There is hope. 

        The symbol of a butterfly is one that means a new life emerging from the old or an incredible transformation.  That is what happens when a family has a child with special needs.  The family must transform their ideas of what their perfect family will be to a reality of what they are.  They must grieve their loss and accept their destiny.  They must find a way to manage their challenges and move forward.  They must find their place in the world and from their develop hope.  This metamorphosis continues through our lives.  How we emotionally nourish and care for our family determines how beautiful our butterfly will be. 

Despite her apparent dislike for bugs Nadiya is fascinated
by the newly hatched Monarchs