When asked about SuperBowl memories, I imagine most people think of cheering on a favorite team, delicious food, or special times with friends or family.
Not me. SuperBowl Sunday 2012 represents for me that day our lives fell apart. It was during the SuperBowl, that my perfect, silly, little almost 3 year old called “Mommy”, fell down, stood up, took 2 steps towards me, fell down again and started seizing.
It was terrifying. I was alone and had no idea what was happening. I am normally very calm and cool headed in crisis. Not that day. I remember calling 911 and saying Gabriel’s name over and over trying to get him to see me. I remember the seizure stopping and him falling asleep. I remember yelling his name and shaking and rocking him, while holding him to my chest, trying to get him to wake up. My first aid training, as a teacher, had taught me to keep people who may have hit their heads awake. The wonderful and calm 911 operator told me it was ok for him to sleep. That what I saw sounded like a seizure (I think, I honestly can’t remember what he said, except that sleep was ok). And that help was on the way.
I remember calling Chuck,who was on the way to a Super Bowl party and over 30 minutes away. While ,I was on the phone with him the ambulance arrived. I remember hearing the sirens and walking to open the door. I remember a female paramedic with the last name Finnegan. (We would see her again weeks later. This time on the side of the interstate in a terrential downpour. Where she recognized G from his red curly hair). I remember a fireman asking if I had my purse and keys and if I wanted to lock the front door. I remember our good friend beating us to the hospital. Chuck had called her and she dropped everything to come to the hospital, so that I wouldn’t be alone. I remember a full hospital room, as my parents and Chuck arrived and our friend prayed for us. I remember the doctors telling us that seizures with fevers were very common and this would probably never happen again. I remember coming back to our house with my parents and trying to watch the rest of the game. I remember thinking “whew, thank God that is over”.
Today is SuperBowl Sunday 2015. 3 years later and our sweet, silly little boy is almost 6. This day will forever be a dividing line in his life. He has now lived more life “sick” than he did healthy.
I have had very few “why” or “how” moments, but pondering this for the last several weeks is one of those. I keep thinking “how is it possible that he has been sick longer than he was healthy?”. As with all injustice, it is unfair and not something I can understand on this side of eternity.
Right now our kid is rocking life! And I mean rocking it. In the last few weeks he has made HUGE developmental leaps. He is more interactive than he has been in years. He is able to have conversations and truly interact with his peers. His physical coordination is stronger and stronger everyday. He is exhibiting more and more self-care and independence skills than we have ever seen.
Today, I am thinking about how different our lives are. How I have learned that, as another friend with a child who was diagnosed with life long medical needs said, you don’t ever really adjust to the “new normal”, but you adjust to the necessary routines. I have learned the significance of being present. G insists that I stay with him until he is asleep each night. I remember being annoyed by this before he was sick. Now I don’t mind, each night I try to soak up those precious moments. The cold hard fact is that SUDEP could take his life any night. We have things in place to prevent this but it is a reality we live with.
Next month we mark 2 years of almost complete seizure freedom (yes, we had a few in Oct–but compared to 100’s of drop seizures a day and multiple gran mal seizures a week that is neglagible).
As always, I post this hoping that our story will bless or help someone else, either in knowing they are not alone or that it is possible to move forward when you are convince you can’t. There is a poem titled Call Back, from the book Streams in the Desert, that I have loved for years. I have recalled it many times during our journey when we learn something from another family sharing their story. It is about being further down a road and calling back to those behind you.
If you have gone a little way ahead of me, call back;
‘Twill cheer my heart and help my feet along the stony track;
And if, perchance, Faith’s light is dim, because the oil is low,
Your call will guide my lagging course as wearily I go.
Call back, and tell me that He went with you into the storm;
Call back, and say He kept you when the forest’s roots were torn;
That when the heavens thundered and the earthquake shook the hill,
He bore you up and held you where the very air was still.
O friend, call back and tell me, for I cannot see your face;
They say it glows with triumph, and your feet bound in the race;
But there are mists between us, and my spirit eyes are dim,
And I cannot see the glory, though I long for word of Him.
But if you’ll say He heard you when your prayer was but a cry,
And if you’ll say He saw you through the night’s sin-darkened sky,
If you have gone a little way ahead, O friend, call back,
‘Twill cheer my heart and help my feet along the stony track.
(Quoted in Streams In The Desert devotional)