I'm not great with words, and I'm not a fabulous writer (thus blogger), but I do have a lot of thoughts going through my head, and a lot goes on around here each day, and it seems it would be a good idea to write it down since my memory seems to be shot. Not to mention the grandparents would like to see pictures once in a while and aren't on Facebook, so maybe I can get a little better at posting them on a blog for them.
I deleted the old blog and started fresh. A clean start.
I guess a good place to start would be a general overview of life in our household right now.....
Monday & Wednesday mornings Riley is attending pre-school at Rainbow Junction from 9:00 to 11:15. He LOVES it, and I really wish it was a 9-5 program, for everyone's sake. He does so well and he's so bored at home...and he's been acting out to show it. I'm sure the stress of our situation doesn't help the behavior either.
The girls are in 2nd grade at Conewago, and they like school, but they're both bored. On my list of to-do's is writing a letter to their principal for each of them requesting that they be given gifted testing. It's my understanding once they receive that request from me they have 90 days to do the testing, so I'll be sure to update on that.
I am currently trying to keep a steady schedule of working Tue/Wed/Thurs and NO work on Friday-Monday. I know, lucky me, right? :) Honestly though, it's a lot of work crammed into 3 days to make life easier (plus they pay a little more for expedited jobs). So generally I work Tuesday from 12-11p (with a break for dinner and usually a 1/2 hour break otherwise). Wednesday I work 9:30 - 11:00 while Riley is in school, and 12:00 - 11p with a break for dinner. Thankfully on Tue/Wed nights Nonnie has been coming to help with getting the kids baths and in bed so that I can get right back to work after dinner. Without her, I'd be working even later!! Then Thursdays I work from 8:00 to whenever it's finished, whether that's 2:00 or 7:00 the next morning. It has to be done for Friday. So that's how my schedule works.
Now you're probably thinking -- what does Riley do?! Well, Jon does his best to take care of him. Most of the time it's TV, but there's games, arts & crafts, reading, and sometimes outside time in there too. But he's limited in his mobility, so it is what it is. Every other Thursday Meemaw (my mom) has him for the day, so that's a huge help and Jon rests/sleeps most of that day.
Fridays & Mondays are usually when we make doctor appointments, do the grocery shopping, and all the errands. Fun days. Ha. Through next week the girls have soccer at our church from 6-7 Tue/Thur, and every Saturday Natalie is in gymnastics from 9-10. We're working on getting Nevaeh in a program of some sort, either dancing or karate (per her request), but haven't locked in on anything....yet.
So then there's Jon. His days are filled with pain, and lots of falling. His lovely doctors simply say use a wheelchair, then you won't fall. Well, that's a lot easier said than done. I've found myself really beating myself up for not building the rancher that I originally had wanted....and wondering if we really WILL be able to live in this house forever or if we'll have to move. I sure hope not. Anyway, he's been pushing and living with the attitude of "Live or Die trying". He can either do as much as he can, with falls & pain & bruising, or he can sit in bed all day or in a wheelchair and do nothing. Yeah....which would you choose?! So he does a lot actually. He truly does push...but we're glad he's still able to at this point.
As far as long term?? Well, he has an appointment with Neurology @ Hershey November 3rd. Not sure what that will bring. They did an MRI of his thoracic spine the other week, which showed a new herniated disc, but they're not doing anything about it and said they'll just see him in Nov. He was also referred to Endocrinology, but won't see them until December. His family doctor referred him to them because he was having low blood sugar issues. Now he actually is also having high blood sugars, so he has been labeled as pre-diabetic. Fantastic. Just what he needs. Tomorrow morning he will be going for some bloodwork, including a fasting glucose, and to re-check his Vitamin D & B12 levels since he's been on those for about 1/2 of the treatment time (8 weeks). Hopefully those numbers have come up!
As far as me, I don't know what to say. It's hard. My heart hurts. For myself, for my husband, for my marriage, for my children, for my future -- OUR future. Most days I don't even want to get out of bed. I don't want to face Riley's hyperactive craziness. I don't want to face phone calls for appointments. I don't want to go to doctor's appointments. I don't want to face seeing my husband fall on the floor in pain. I don't want to face bills. I don't want to face feeling like I'm alone. I feel like I live in some kind of twilight zone where absolutely no one else understands how I feel or what I'm going through. I feel like friends avoid us because it's depressing to hear about our lives. Trust me, it IS! It's what we live through every day. But we need our friends. We need people to listen. We need help. Jon had a nurse and physical therapist that came in for a while, but now they seem to think we don't need assistance anymore. We're still trying to get help from different agencies. Most days Jon & I are emotionally and physically exhausted and we have three little munchkins saying play a game with me please? Can we go to the park? Can we go do this? And honestly, it breaks our hearts, but we just. don't. have. the. energy. Stress is high. We're all worn thin. We just try to make it through each day. Make sure kids are bathed, fed, and school work done. But there's not a whole lot of time for Jon & I together, to have any kind of enriching conversation or time together. There's not a whole lot of "me" time. Even when there IS an hour or so with no kids or something, I spend it catching up on bills or cleaning or just sleeping in the quiet. It's just....exhausting. I read what I'm writing and it just doesn't "sound" like a lot, but ...... it is. For us, it's everything. Life revolves around a sick family member, and that's hard. It's hard when there's nothing you can do to help them. It's hard when you want to do something as a family and you have to stop and say well, you can't take a wheelchair there, so daddy can't go....and then you leave him at home all by himself ALL day. He can't go to soccer. He can't go to gymnastics. He can't drive. He can't run and play ball in the yard. He's very limited. And that hurts. I'm sure it hurts him, it hurts me, it hurts the kids.
We are just struggling with life right now. Struggling with broken hopes and dreams. Struggling with 3 small kids and so much in the background that they don't understand. Our future is hard to plan or even imagine, because we just don't know where things will be with Jon's health. We hate to think he could be this way permanently, but what if he is?
I don't know. I could go on and on...I haven't had an outlet for my thoughts in a long time. I never want to burden anyone with things.
But....this is where I'll keep everyone updated with Jon's health, the amusing antics of my kiddos, and some pics for the grandparents (great grandparents of the kids).
Please just continue to pray for our family....and just let us know that you care. Tell us you're praying for us. Give Jon a call to say hello. Stop in (my house may be a mess, but I don't care). And for those of you who know me -- this will shock you. Give hugs. I need hugs. I'm learning how good it feels to know that someone loves you by a simple gesture of a hug. I may cry, so bear with me. And if you ask me how I am -- don't expect the casual "Fine." I will answer you truthfully, so if you don't have time -- don't ask :)
Well, I need to get back to work for the evening, so I guess I'll leave it at that!
Until next time....
