Saturday, March 26, 2011

A New Normal

During our theme of Health Week here at The Intentional Journey, I had to narrow down topics to write about.  There are many health topics that are extremely near and dear to me and I find myself to be most passionate in my journey when I am able to advocate and educate others in these matters.
Today, I will share with you a topic that is very close to me, something that changed my life completely and has been a part of my life for as long as I’ve been a parent.  It has changed me at my very core, and I advocate loudly for research funds, treatment options and fair treatment for individuals living with this condition.  In fact, later this week, I am traveling with my twins (Daniel and Jonah, who are almost 11), one of our exchange students and Lyla, Jonah’s service dog, to Washington D.C. for a conference.  Jonah was nominated and chosen to be a 2011 Ambassador for the Kids Speak Up program through the Epilepsy Foundation, a national organization the promotes research and lends support to those living with Epilepsy, a fairly common disorder here in the United States and around the world.  We are looking forward to our journey and covet your prayers for good health, safe travels, effectiveness and also that we just have a laid-back and relaxing trip.  I’ll be the sole driver and we have to leave my youngest back home with Daddy and Grandma and Grandpa, so part of my heart will be at home for our whole trip… but, without further ado… Epilepsy - Our Story.  

My twins were born at 34 weeks gestation after an extremely complicated pregnancy.  They were in the hospital for a while, Baby Daniel came home after 11 days and I treasured having him home with me.  Jonah remained in the hospital for over two months, so my time was spent traveling back and forth to the hospital to see Jonah, taking care of Daniel and healing after that difficult pregnancy.  Around 4 weeks of age, Daniel began having what I thought might be seizures, but being an early baby, twitches are quite common, so (having a medical background by education and experience) I didn’t think too much of it.  He did his twitching thing precisely one time a day, for up to ten or fifteen minutes each day, for several days.  I made a mental note to tell the doctor when we next saw him.  When I told the doctor, and Daniel had an episode during his appointment, my world, at that very moment, slowed to a stand still.  Frankly, things moved very quickly around me, but my world halted.  The doctor was very concerned by these episodes and before I knew it, we were scheduling appointments with neurologists, for tests and for hospital admissions.  Little did I know, Jonah had begun to have seizures in the hospital NICU as well.  

Through all of this, I was, pretty much as I remain today, pretty unfazed by all of the commotion and chaos.  The reality is that a certain degree of chaos is and probably always will be, a part of my life because of the nature of this disorder.  The way we choose to deal with the stress, our reaction to the pressure, is entirely our choosing… it is something I deal with on a daily basis and I am getting better and not feeling so much negative stress, but it is always something I have to intentionally and purposefully work on.

By the time Jonah came home from the hospital, Daniel had already been diagnosed with Pyridoxine Dependent Epilepsy.  This is a genetic, metabolic disorder that results in seizures and other not so fun stuff.    There is a link at the end of this blog entry for more information about this disorder.   When Jonah came home, we took him over to my parents house and Jonah had his first seizure that we witnessed.  My heart broke all over again.  And we went through the same things all over again - neurology, MRI, blood work, spinal taps, EEGs… hospital stays.

We did, however, even with the chaos of new babies at home and some very serious medical issues to deal with, settle into a schedule, albeit a baby schedule, and our situation with high medical needs infants became our new normal.  From time to time, we’d have a “big” event… “Events” in the epilepsy world are not such good things… so we dreaded the “big ones”, but with medication, we got into a groove and did OK.

By the time the boys were almost a year old, we gave into the reality that our lives, once again, would have to settle into another new normal.  This is when we were no longer able to put blinders on and had to admit to ourselves that the boys were wonderful, but significantly delayed in their development.  So, the therapies started.  They both had developmental therapy once a week and this was all Daniel needed.  Jonah also had physical therapy and occupational therapy once a week.  Jonah was dealing with low muscle tone and the beginnings of having many sensory issues.  On top of their therapists coming to the house 3 times a week, we also had daily therapy sessions with Jonah to work on his physical weaknesses and sensory issues.  

It was right around the time the twins turned 2 that I had a “God moment”.  I realized that these little people were supposed to be with me.  God had uniquely prepared me for a life of handling medical issues.  I had no idea that my schooling and work experience would have so prepared me for what I would live with for the rest of my life… but indeed, God’s Hand has been in my life and evident long before I made the choice to trust Him and Him alone.  As far back as middle school, I was volunteering in the “multiple handicap” classroom, feeding peers who were unable to feed themselves and helping with other classroom activities.  In high school, I did the same in a new setting.  Later in high school, I worked at a pediatric nursing home, and worked there until my 2nd year of college.  After college, I was a supervisor for a cluster of group homes for special needs adults.  Through all of this time, people frequently would say things to me like “Isn’t that the saddest place?” or “How can you work there?  It is so tragic!”   I never once thought of my charges as anything other than happy individuals who had different abilities than I had.  The vast majority were born into their disabilities and knew no other way of life.  They were content and loved.  They were happy and playful.  The tragedy of their situations, in my eyes, was that parents would put their children into a home, not that these children were alive and making others uncomfortable by their mere existence.   I didn’t know it at the time, but my thoughts as a teenager would meet me when my twins were just about two years old.  

God gave me these amazing little people to care for and teach and love and nurture… and because I was chosen to be their mother, I was able to experience a full circle of care - certainly taking care of someone else’s child (Especially when you are a teenager or young 20-something working in a care facility) is much different than caring for your own… but I got to experience taking care of my own children on such a deep level - I was caring for not only their little fragile bodies, as I’d done so many times before with the children of others, but I was “in charge” of all of the other aspects of their life as well.  Sure, I had moments when I felt completely and utterly sorry for myself for having to deal with it all, but I realized very quickly that God had prepared me for this.  My two year olds could feed themselves, my two year olds had even begun to walk…  Honestly, I never looked at my years of caring for special needs individuals in terms of “Oh, he is worse off than she is.” or  even in terms of “That is really bad.”  But I had an epiphany that God gave me these children, He gave me a maverick spirit to fight for them… My children were not as “bad off” as some of the children I worked with.  Of course, they were “worse off” than some… but I realized with my whole heart that God had shown me that they could have been much, much sicker than what they were, and that I would never again feel sorry for myself and I would never start to pity them.

Time has continued.  The twins will be 11 in May.  We had a new addition to our family when the twins were 4.  Sam had his first seizure when he was three days old, and we’ve gone through many of the same things with Sam as we did with the twins.  Therapies, tests, hospital stays, endless appointments… but things are looked at through different glasses now.  “Can’t” is a word that is not allowed in our home.  The boys are always allowed to ask for help in doing anything they’re having difficulty with, but “can’t”… it just isn’t in our vocabulary.  I work so hard, and I like to believe that with two 10 year olds and a 6 year old, that that is already firmly instilled in them, but we still have moments of self-pity and those are the moments when tears are shed, “can’t” is thrown around a bit and then we pick ourselves up and move on to completing the task at hand. 

God is so gracious to us.  He has given each of my children the exact temperment they need to deal with their challenges.  Daniel doesn’t have many seizures these days, and it is a good thing!  He is a sensitive soul, easily bothered by some things.  Jonah has a tough edge and what some would call a jaded attitude - a gift from God, in my book… he has enough toughness to endure the trials and struggles he faces, but enough common sense to know that, even at his young age, those struggles are rotten.  This is sometimes difficult, but most of the time, it is a true gift to see this little person who is so completely OK with who he is.  I don’t think I’ve ever met a person who is as comfortable in his own skin as Jonah is.  And sweet Sam… kind of in between Daniel and Jonah as far as the severity of his issues, but he has a sweet disposition and I’ve pretty much decided that, seizures and other neurological issues aside, the biggest issue with this one is “Youngest Child Syndrome”.  He wears the baby role well.  So God has prepared not only my heart for my children, but He has prepared each of them so completely for this journey.  It is breath-taking to be witness to these little souls each day, watching God’s plan for them unfold before my very eyes.
I’m including some links that are good sources for Epilepsy information.  There are many misconceptions about Epilepsy, seizures and seizure disorders out there and it is helpful for all of us to be at least minimally aware of the different types of seizures and how to help if we suspect someone is having a seizure.  The majority of seizures are NOT “big” ones (which used to be called “grand mal” seizures, now called tonic-clonic seizures), but  “smaller” or more subtle ones that can easily be mistaken for other things (daydreaming, wandering around, speaking gibberish, an action repeated over and over again, eye blinking, lip smacking… lots of different things).  Please take a little bit of time to familiarize yourself with Epilepsy, I promise you, it is not time wasted.  The millions of Americans living with Epilepsy today appreciate the time others take in learning about this condition.

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