It’s 2am, the house is finally quiet except for the low voices of The Golden Girls-I don’t know what I’d so without those ladies. I can’t sleep, thankfully everyone else can. All that I can think about is how much our lives have changed through the years. We’ve seen a painfully shy first born (Coleman) develop in ways we thought we’d never see, medical tragedies with Jack pretty much from birth-current age, losing our home due to medical bills, a once struggling farm stand that has grown greatly, but can’t get the proper attention a business needs because of Jack’s situation, a sweet teenage daughter that is somewhat scared to be at home, living in a state of constant panic thinking of the what-if’s, questioning faith, the lack of peace at home, the confinement from having to make sure the doors are locked at all times, the list goes on. So many changes.

There’s a Christmas song that I never really liked until this past year, I felt like this song was written for me by Band Aid, “Do they know its Christmas”. I know the song was written to bring awareness to the hunger & suffering issues in Africa, but it can be interpreted many ways. In my case, one of the lyrics talks about a world of dreaded fear. That is how Lee & I live. Whether at home or away, we truly never know what is going to occur, what sort of calamity Jack is going to get into. Another lyric says, “well tonight thank God it’s them instead of you”. I would never wish what we endure to anyone, however, it’s so hard to imagine why so many people in this world can live their life in peace. They can have parties, go to parties, go to church, do anything they wish without that sense of fear. There are many forms of peace, but there is NOTHING like the peace of knowing you have a safe home. Once that peace gets altered, life gets hard. In that last lyric I quoted, I think about my next door neighbor that is elderly & single & I am envious. I think of the family across the street that has the joy of two beautiful, sweet daughters & am jealous, heck, I’m even jealous of the possible drug house down the street-at least they are oblivious to their craziness! I know what people think, we hear it all the time-I don’t know how you do it. That gets said & then they go back to their normal, safe homes. I have to smile & say, “I just do” & go back to my home that is filled with unease.

Logically, I know there is nothing anyone can do, but it still seems unfair to me. After meeting with a social worker a few days ago, I learned just that (which we already knew). With all the things going on now with Jack, I was hopeful there would be a placement option. With him being under 18, there is nothing. When Jack turns 18 in August, options will be better. We still haven’t heard back from the doctor about giving Jack something to help suppress his hormones. That’s discouraging, but I realize there are tons of needs from other patients. I remember calling in to the same doctor when Jack was younger because of seizure emergencies. How panicked I would be. Here was this little tiny baby having 100’s of seizures in a span of just a few hours that went on all day & night. We thought seizures would be our main focus for Jack’s life entirety Now, seizures aren’t even a thought. They are more controlled than ever, he’s gone several months without one in fact. Although I fought tirelessly to find alternatives to treat the seizures, I never thought his life would be in the form it is now.

As I close, I’d like to thank you all for your words of encouragement, thoughts, & prayers. Be ever so thankful for the peace that surrounds your home.

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner.

4 thoughts on “Fear”

  1. I used to be so scared of nightfall here, in this house, that I kept a loaded shotgun under my pillows. Abusive ex. I wonder if the feelings are similar? I waited for noises in the night. It took years to overcome but now, I do take it for granted. My home is my safe haven, my sanctuary. I wouldn’t wish what you’re going through on anyone, either, but I do wish more comfort and peace for you. I still want to help in any way I can. I pray it works out and I can come dance to Jack’s guitar.

    Liked by 1 person

  2. Amy and Lee, I have felt like I knew the Berry family going back to when we took our little grands to your farm to pick strawberries when you were at the old place. Those were fun times for them. I remember hearing about all the struggles of your little Jack in the early years with his name and your family being on many prayer lists. Then it seemed I did not hear much about your situation till more recently. Reading your posts and blogs has opened my eyes to the unbelievable life your family has dealt with since Jack’s arrival in your life. Both you and Lee have shown us what the meaning of stamina and endurance is. You are special human beings to have accomplished what you have with all the challenges and adversity in your life every day. Thank God for your sense of humor as it has surely kept you facing one day after another with so many obstacles. You are truly a gifted writer. Maybe some day you can write a book which will be a best seller. From that a movie will be made. Seeing your daily life in the screen will win the Oscars! Just keep on writing as I feel sure it an excellent form of therapy for you. And God only knows how much therapy you need and deserve. My prayers for you and family are for peace and calmness in your life in ways that most of us take for granted until we read about your lifestyle. May God deliver a plan for Jack’s care that bring peace to your family.

    Liked by 1 person

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