Warning: I state my true feelings in this post. I don't mean to offend anyone, but I don't feel anything I have said is unpleasing to God or that I have any reason to be ashamed. Read at your own risk.
Things have been difficult around here.
For the last few weeks I found myself just saying “get through the holidays, it’s just the stress of holidays”. Well, it’s not. It’s just life.
We had a wonderful Christmas. I worked a lot of long hours and long days the last few months because Jon & I really wanted the kids to have a special Christmas. We know material things won’t make them happy, but there is so much chaos around here all the time and so much stress, we wanted to be able to give them one of the things all three have been wanting - iPod touches.
And so we spread out our Christmas shopping over the last few months (we started Christmas shopping in August!), and we were truly blessed as far as gift giving this year.
None of it matters. I would give it all away to have peace and health in our home.
I know that life is filled with peaks and valleys. I know that there have been times I’ve had
super happy posts and I’ve dealt with life in a positive way. Today is not one of those days. This month is not one of those months. I personally am in a very low valley. I am sad. I feel hurt. I feel stressed. I feel like a failure in so many ways. I feel burnt out.
There are simple things that are getting to me, maybe even call them selfish things, and then there are big things. One of the simple things is I find it extremely frustrating that I have to drive everywhere and do everything. I can’t ask Jon to run to the store for a gallon of milk. I can’t have Jon run and get pizza for dinner. I can’t ask Jon to take the kids to the park and have quiet time here at the house. I can’t have Jon take Natalie to gymnastics. I have to take all the kids to their appointments. I have to take Jon to his appointments, lab work, pick up his prescriptions (do you realize I’m at the pharmacy at least 5x a month?) I have to drive everywhere, all. the. time. I hate it. I hate driving -- well, except when I’m by myself (rarely), because that means quiet time in the car. It’s not a big deal - but think about your life. Think about everything your spouse drives to/for. I know I never thought about it before I was in this situation. It’s a pretty big deal ... to me. I have the responsibility of doing things around the house - things that may seem so simple, but they’re not. I have two heavy bathroom mirrors that have been sitting in the box in my master bath for months.....because I can’t hang them myself (or at least not get them up there straight!! Haha) ...nor do I honestly know how to hang something so heavy in a proper way. Call
me ignorant -- it’s the truth. In a few months it will be my responsibility to get the supplies to put a shed in the back yard - something about stones and wood to make a support?? I don’t know...but I’ll have to figure it out...and get it done. This house needs painted inside. Terribly.
I have some of the paint - but no time to do it where I won’t end up with a 5 gal bucket of paint on my floors. It’s never ending the things that normally would be no brainers in a house - but I have to figure out how to take care of them myself - and do it myself usually.
I’m frustrated with Jon’s health. It’s at a standstill with doctors, yet he’s actually been feeling worse. As of right now they just started with monthly B-12 injections. That’s it. My mom helped me find and I purchased some sublingual Vit D & B-12 pills for him to take (they dissolve in his mouth) to see if it helps with his absorption, since it’s obvious that’s an issue. He sees a new doctor, an internist, at Hershey on February 20th. I had a list a mile long of things to do and phone calls to make yesterday, and somehow didn’t have “get a new family doctor” on that list. So that will be on my call list for Friday. Jon is incapable mentally and emotionally of handling this task, and it can’t be put off any longer. I just have to do it. Imagine though, having gone to more doctors than you can remember or even keep count of, and every single one saying the
same thing -- they can’t help you. They don’t know why you have pain. So now imagine trying just one more. Yeah, it’s not going to be easy.
I’m frustrated with our children. That’s not to be mistaken with saying I don’t love them. I DO. Our children are very, VERY high energy and very intelligent and need a lot of stimulation, both physically and emotionally. I’m tapped out. Jon’s been tapped out. They come home from school, and it’s just instant mayhem. They’re not bad. Really, they’re not. They act the way they do because of the life they live. It’s not normal. We send them off to school M-F. Saturdays Natalie has gymnastics in the morning for an hour (at which time I usually have the question of when am I going to put Nevaeh in Karate -and Riley too) and I start having heart palpitations because my heart aches for her. I want to. I need to. But I just cannot imagine adding something
else to my schedule. Bedtime is ridiculous. The girls have gotten slightly better, but Riley -- oh wow. Just last night I noticed on my phone at 10:00 I had a random text from Natalie’s iPod - I knew immediately he had gone into her room and taken it off her dock and done it. So I go upstairs and find him in Natalie’s bed, under her covers, she’s sawing logs, and he’s playing her iPod. This is 2.5 hours after he was put in bed originally. Jon & I tag teamed putting him back in his room and dealing with the screaming until he finally went to sleep. Natalie & Nevaeh have each or both been waking up in the middle of the night with nightmares or saying they can’t go back to sleep. I don’t know how to help them. Nevaeh has constant pain, constant headaches. I have had her to the doctor and I’m just dreading taking her back again, but I know I need to.
I’m frustrated with relationships. I’m being real here people - and I speak for myself and Jonathan - we feel abandoned. We attend a church of roughly 2,000 people, and a LOT of those people know who we are simply because my father-in-law is one of the pastors on staff. Since Jon started deteriorating in May - TWO people have made a point to actually come to the house to visit him. TWO. That’s almost 9 months, and TWO visitors. One person has made it a point
to call or text and even come and pick Jon up and take him to breakfast for a few hours. Yes, you have to load his wheelchair in your trunk and you have to come get him, but it’s not THAT
bad. The other has come to visit and also helped tremendously in the beginning with watching kids, helping make sure we could get to appointments and such. Yes, for the first few months we had meals brought to us, and don’t get me wrong, that is such a blessing. Jon used to be our cook (and he still is for the most part), but it’s hard for him to stand and cook a meal each night. I
am not in any way trying to sound ungrateful. But I would like to think that if I had a friend who was going through what we’re going through - I would reach out to them. Call them, e-mail them, send a note of encouragement, offer to help in whatever capacity I could, and VISIT. I mean he’s basically a shut-in. Yes, I drag him to the store with me and he goes to lots of doctor appointments, but he doesn’t get out to socialize. He can’t even attend church at this point
because of his migraines and the noise level is too much for him.
From my perspective, I feel like there are a lot of people who say they are praying for us -- and they are, and I am thankful for that...but I feel like it ends there. Over the last 9 months I have had 2 women who have faithfully called me or e-mailed or texted and have brought meals and gone out for a bite to eat . But for the most part, I don’t have much of a social life either outside this house. Thankfully I have a friend thousands of miles away (not really that far, but it feels like it!) in Georgia who puts up with my incessant rants via text -- maybe someday I’ll meet her!!
Some of you may be reading this thinking WOW. She is really ungrateful and that’s really rude. I’m sorry you feel that way. I know it’s hard to comprehend and understand what Jon & I are going through. I know it’s sad and depressing to talk about our life. But when someone has cancer or breaks a bone or someone dies - everyone jumps to shower that family with help and support, no? Jon’s “cancer” is long term. We’ve been dealing with it for almost 8 years and it may be for the rest of our lives. It’s just as hard as the first day - no, make that harder, because we
have 3 kids now. But it’s easy for people to forget. Easy for people to just move on and just say all I can do is pray. Where is the love in that? If your child had long term health care needs, would you grow “accustomed” to them and be less concerned about their well-being, emotionally and physically? No. You would be there every day. Now, I’m not saying that our life is your number one priority. Goodness I know people have lives. I know people have children. I know people have jobs, extracurricular activities, and other friends. I also know other people are dealing with hard times and heartache too. So I’m not saying HEY LOOK AT ME, I’M SPECIAL. I’m
not. We’re not. But we do need friends and genuine love and support, and we feel very abandoned.
Saying all that, I know we need to trust God, and we DO - but He created us to love one another.
He created us for each other. I wouldn’t wish my life on my worst enemy, and I can imagine being on the other side of the picture and it being difficult to know how to love and to express
that love. All I ask is that you try. If not for/to me - to my kids. To Jonathan. We’re human, and humans crave love. It won’t take away our pain, it won’t take away our struggles, but at the end of the day it will make us SMILE and feel like we really matter to someone and that someone actually knows we’re still here and loves us.
So now that I’m done my pity party, I’ve got to get back to work, which is a whole other post!
Again, I don’t mean this post to be offensive to anyone or to hurt anyone’s feelings. But I don’t
feel as a Christian I should have to pretend or hide the way I feel....and maybe some of you don’t even realize how much we’re hurting or how much we need this kind of support. Now you do. So please, if not for me, for Jon - don’t let him go through this alone - and for the kids, help us make them realize how special they are and how loved they are, regardless of the stress at home.
You never know how something so small might make our day THAT much brighter.
