In The Beginning

Me and Nadiya on Mother's day 2011

         My name is Jill.  Today I am many things to many people but a few years ago there were days when I didn’t even feel like a person.  I left a teaching career behind to become a stay at home mother.  My first child, Anastasiya, had her challenges but was typical.  A year and a half later her sister Nadiya was born and my life was taken apart and rearranged piece by piece, without a manual and without a plan.  Nadiya has a complicated seizure disorder called Lennox-Gastaut Syndrome (LGS) as well as many other neurological and developmental impairments.   This blog is about the journey that has brought us to the present where despite many difficulties I learned along the way how to be a wife, mother, friend, educator, advocate, and Nadiya’s voice.

          Nadiya was born at 39 weeks gestation.  My pregnancy was normal and healthy.  I went to the gym regularly and was in great shape.  Nadiya was a healthy but large 9lbs 4 oz.  The only complication during birth was some mild shoulder dystocia that was relieved in 30 seconds with an episiotomy.  Nadiya was not admitted to the NICU or given oxygen; in fact her APGAR scores were all 9 the first time around.  All seemed well but I always thought she was a little floppier than what was normal and her hips felt strange to me but no one was concerned.

          At 4 months I began to question what was normal.  Nadiya still had head lag and she had colic that didn’t seem to resolve.  These were telltale signs of a neurological disorder but I was inexperienced and living in the comfort of ignorance. 

By 6 moths she was not playing with toys and seemed a little disconnected.  I wasn’t bonding with Nadiya but I was also experiencing some post partum depression so I took responsibility for the disconnect.  Nadiya still had head lag and the colic was still going strong.  Her pediatrician was optimistic blaming Nadiya’s size since her sister was really small and compact and was sitting independently by 7 months.   The doctor reminded me that Anastasiya was late with all of her gross motor function but still on the edge or normal.  She felt Nadiya’s tone was low (hypotonic) but she believed Nadiya would outgrow that.  She said to give Nadiya time. 

A neurologist would have disagreed with this idea.  In fact, a neurologist would have seen these symptoms as red flags.  A young mother often does not want to see the frightening possibilities so taking a passive stance was almost instinctive to me.  What I didn’t address did not exist.

I ignored the feeding problems for awhile.   I ignored the fact that Nadiya would say a word, mama, hi, kaboom, and then lose the word completely after a few weeks.  I ignored the ongoing colic and the inability to socially bond.  I ignored the low tone and the head lag.  I even ignored the fact that Nadiya was not meeting milestones.

This denial lasted about 2 months and then when Nadiya was 8 months old I went back to the pediatrician to insist that Nadiya see a specialist.  This began the long road to eventually discovering Nadiya had a seizure disorder called Infantile Spasms and negotiating services for therapies through the school system called early intervention.  Along the way we learned a lot about Nadiya’s condition and how to manage daily life with a profoundly disabled child.

We saw many doctors and Nadiya’s health had its ups and downs.  Though this journey I learned to collect, organize, and archive Nadiya’s medical history.  I learned not only to advocate for her needs but for other families with disabled children. 

Today Nadiya’s diagnosis has advanced to Lennox- Gastaut Syndrome (LGS) but the underlying cause is still labeled cryptogenic.  This means they do not know the origin of her seizure disorder and disabilities.  She is seven and on a diet called the ketogenic diet which controls a great deal of her seizures.

It is my objective to add articles designed to help families with a disable child.  It is my intention to update this blog on a regular basis, hopefully weekly.  I will include experiences and techniques that have helped me.  I will share organization tips, social solutions, and address many problems that families like ours face.  If you are a family struggling to overcome a difficult circumstance with a disabled child I hope to inspire and assist in ways that were not available to me during our early years with Nadiya. 

I am not a physician or a therapist.  I am just a Language Arts teacher turned stay at home mom who has found some productive and effective ways to manage our difficult situation and make the best out of what life has to offer.  I welcome productive comments and questions as we continue this journey.