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.