AS and death/funeral do NOT go together....

One week ago today my step-father passed let me back up a bit.....

About a month ago, my step-father was in a terrible car accident. He had to be life-flighted to Atlanta Medical Center. He had basically crushed his leg from the hip to the knee and his foot (same leg). He had surgery and was in ICU. Two days after I had remicade infusion, so for those that have this---I did not go to the hospital for a week. For those that are wondering why, well, I couldn't chance getting sick because my immune system is low--and especially after a treatment. When you walked in to head to the ICU you had to go through the emergency. My mom and sister wanted me to wear a mask from the very first day I was there. But, ok...then I'd get the stares of does she have TB? Or can I get sick if I'm around her. NO! YOU'RE MAKING ME SICK! Didn't really want to explain so I just risked being there. I did skip the 1st few days after my infusion to be safe. We went through ups and downs..we'd get good news then bad, then good, then bad.

One week before he passed, I went in to see Drexel and he turned to look at me and then tried to ask, "how are you". That was his first words to me every time he saw me. See, he knew pain. He lived with it daily as I do. He couldn't talk because of the vent, but I knew what he was asking. I told him I was good, it was him that needed to get better. I thought he would after this day. It seemed he was getting better.

One week ago today he passed. My mom called us (there are 5 of us kids)--at the time I was in the middle of a musical camp and had 30 kids under my watch! I couldn't go to the hospital and I did feel so guilty for not being there. Thankfully, my sister and brothers were there. Also, thankful that this was the last day for my "Annie" camp. My AS was already killing me. Why did I think that doing a musical camp was a good idea??? After our musical/show that evening the LONG weekend began. Me and my sister and all my brothers met at moms. We stayed up until 1:00 making plans, sharing and talking. Up early the next day to meet at the funeral home and make more plans. Selecting burial plot for Drexel which also meant one for mom--not something I thought I'd think about that day. I came home that evening to rest--I had to rest if I was going to make it. In saying that--I mean I had to rest if my body was going to make it. Those with AS you understand that sentence, those that don't have it--no need to try.

Saturday would again be a very long day. Met at funeral home early that morning and then visitation that evening. I've never seen so many people crammed in to such a small space. Shaking my hand, hugging me tightly, patting my back, standing for hours--some of you reading just cringed in pain because you know what that meant. I still have another day to go---. And then the folks that asked the questions, how are you? So, what is it you have--and then you start to explain and they either give you the blank stare of boredom or they say, "oh it's arthritis". I didn't think that evening would ever end. How could 3 hours seem as if it were 12. Spent the night with mom--really wishing I could take her pain away. I know she was wishing she could take mine away as well. Our pain was different though--but also the same. Physical and mental pain can go hand in hand and at this point, it was.

Sunday would be another very long day and at this point my body was starting to cuss me out. Me and my sister needed to run over the songs we'd sing--yes, we did sing, that's what Drexel would've wanted and it's what mom wanted. The extended family was pouring in moms house. The graveside was terrible for me. How was I supposed to sit on that chair on that slope. How do I walk down that hill. I had to literally lean on my sister so I wouldn't fall. Only she knows how hard I was pressing to be able to sit and stand. My legs were shaking and weak--I forgot to eat. How did I forget to eat??? Then it was over and back to moms only to a full house of people. Once everyone left and it was just the siblings and our families we were able to rest and talk. I didn't mention that this was my youngest brothers birthday--so he buried his dad on his bday. Not a memory anyone would want. I wanted so much for us to come home and have dinner and birthday cake, but it just wasn't happening the way my mind wanted.

My girls spent the night with their nanna. And my body made it. I did sleep for 10 hours that night which in turn caused getting out of bed hard the next morning. So, you may read this and think she's selfish. It's all about her. Why would this post be about herself and not the pain that the family is going through. This post is both. The pain of death and the pain of AS. This is for those that have AS to know that it will be hard, but your body will make it through. That you will spend DAYS recouping from the stress that your body went through.

Healing when you lose a loved one takes time. Having to deal with death when you have A.S is hard, but you can do it. Folks don't understand how hard it is--and it's best to not even try to explain sometimes. But, we will heal and we will move forward and not let life stop. It just takes each person time--time that only they know. Drexel wouldn't want us to stop living. He'd want us to "be okay".

So, say I love you more and hug a little "harder/or softer". None of us are guaranteed tomorrow, but we are all guaranteed eternal life through Jesus Christ our Savior. For those of us that believe, death is just the beginning of living life to the fullest--PAIN FREE-- with Jesus and our loved ones who've gone before us.

AS has my body but not me!


  1. Dearest Meloni,
    My sympathies to you and your family. I know your pain both mentally and physically. I haven't been able to attend service at CCW for the past two Sundays due to my pain threshold.I don't have to imagine your pain;I know it. I live it. I can't do any ansaids of any kind because of allergeric type reactions that trigger severe edema inc.fluid around my doc said no more tries!I know how you feel wearing the "mask" so YOU wont get sick and the many questions of others. NO, IT'S NOT JUST ARTHRITIS!We wish it was that simple.I also have Psoractic Arthritis,Fibromyalgia,EBV & degenerative disc disease, and just added 3 wks ago RSD.Can't stand for anything to touch me. It hurts. I can imagine how sore you were from all the hugs...ppl just dont know!
    I know the service was lovely with you & Tonya singing Drexel into Heaven along with all the beautiful that must have sounded!Along with Donna's talented hands playing the piano to accompany your voices, well, I can sure imagine it was beyond awesome!
    God bless you and know I keep your family lifted in prayer. I keep you also in prayer for your needs that I so know you try live with. May God's mercy and strength continue to bless all that you do.Especially, with the Music Ministry at CCW. Our congregation is so blessed to have you leading the way spiritually in musical inspirations.
    Again,sincerest sympathies on Drexel passing and know you are lifted in prayer..God will do the rest.
    In Christian Love,
    Teresa Shehee

  2. Meloni -
    I'm sorry to hear of your loss. You are in my thoughts and prayers. This was a wonderful post!!
    - Amanda


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