Friday, October 10, 2008

Ramblings of an Insomniac......

I think I go through this every time we come home from the hospital or we have some type of crisis. I'm not sure right now where my life is leading. Why I am doing what I do, and why things don't seem to ever get any easier.

There are days that I can deal with our lives just fine, and then it seems there are weeks where I just want to crawl in a hole and hide. I think of my house that has turned into a dump, all of the things that need to be repaired, no money to do it with. All of the stuff that I need to organize, that I have NO IDEA how to organize it.

Our house is filled with medical supplies from one end to the other. It has way too many reptiles in it, and so many toys. Then there is the laundry that is multiplying faster than I can keep up with it. It's a constant battle to keep my kids in clothes. I can't get my kids to clean up after themselves. I feel like a broken record, pick this up, pick that up.

Once again I am doing this all on my own. Andy's schedule is that he works nights. So he isn't home to help with Rhett's care, helping the kids with homework, helping to make sure chores get done, fixing dinner....(with a pantry that is almost completely empty with no signs of filling up any time soon mind you....), and not to mention being there for me.

My mom tries to come over on Thursday's. My sister and my mom both come over every Sunday for dinner, and do a little laundry and such. But in reality, whenever Rhett needs anything it's my job to do it. Even if Andy is awake, and I am asleep it's my job to take care of Rhett.

I have to wrestle him to change his dressings, I have to prepare, hook him up and unhook him from his feeds, clean it all up, I change all of the diapers, I am the one that has to hold him when he is upset, I take him to all of his appointments, I do all of the therapies, then wrestle him to put his O2 on at night. I am getting really burned out here.

I can't focus on any of my other kids because I am so worn out from dealing with everything else on my own. It's not fair. It's not Andy's fault. He is working and trying to support the family in making money, but I don't think anyone really grasps what I am doing here.

That frustrates me beyond belief. When Andy asks me what's wrong, how do I explain it, he doesn't understand.

I can't make a meal because Rhett is into everything. Opening cupboards, climbing on chairs to get on the table, pulling stuff out from the sink. Just making a huge mess that I later have to clean up. I can't leave him in the living room because he just cries. He has been through so much in such a short period of time that he NEEDS me. It's not a behavior thing, he really needs me there with him to reassure him that things are okay.

Dakota is having issues in school, and it's been two weeks, and I still haven't been able to go down and talk to the counselor's. I was sick for a week, and then Rhett was in the hospital. It's not fair to Dakota. He NEEDS me too, and I am failing him.

Hunter and Chloee seem to get along okay, but that worries me that they don't ask for much. Hunter wants to go play alot, he is my only person that I can trust with Rhett when I need to shower or whatever. I am putting too much responsibility on him.

Chloee just wants her mommy to sit with her and play dolls, or read her a story, and I am too tired to do it. I have had Rhett sitting on me all day, and I don't want anyone touching me. I need personal space. How is this fair to her?

Do you see where I am failing as a mother and a wife here?

Andy and I can joke alot, and we have fun when we are together. But those times are so few and far between these days. We are always in separate rooms doing separate things.

I don't know what to do anymore. These are the thoughts that are keeping me awake at night. I figured if I put them all down and got them out of my head that maybe I could sleep.

Of course I am going to just drift off, and then Rhett will wake up. He has outgrown his crib and just flings himself all over hitting his head on the bars, and getting all tangled up. Or maybe one of the other kids will have a bad dream and need me to comfort them.

I really try not to be negative. I am doing the best that I can, it's just that it's not good enough, for me, for my husband, and for my kids. The ones who really matter.



Chris said...

Pam, you are only one person. You can't do it all. You said Andy works nights, does he work days too? I'm not being sarcastic with the question, just curious. It sounds like you and Andy need to sit down again and talk about all that needs to be done to keep your family happy and cared for.

It is ok to need some help. I understand Rhett only wanting you when he is upset, but maybe Andy could help with Rhett's feed and at least one therapy. Anything to give you a break.

You need to take care of yourself! My DH works a full day too, and there are days when he gets home and the last thing he wants to do is take care of kids. I don't hand the kids off to him, but there are nights when I am just too tired, and need a break. He senses that and lends a hand--either by changing a diaper, unloading the dishwasher or checking over homework. Just a little bit of extra help can go a long way.

Talk to Andy again. Make him understand. He sounds like a great guy; I'm sure the two of you can come up with a plan to help make things a little easier for you. You can only be superwoman for so long without feeling the effects of being everything to everybody! (((HUGS)))

Leah said...

I used to wear your shoes! When Angela was little, and with some of the same needs as Rhett (on the feeding pump, tube care, etc.) Angela's dad (also Andy) did NONE of it. We also had 4 other kids who needed parents. Needed to get to their activities. Needing loving. Their dad worked nights also, and would come home about 7:00 a.m to sleep. Angela's dad didn't even know how to turn the feeding pump on, silence it's alarms, NOTHING. If a kid needed something during the night, it was me. I was the only one getting constantly interrupted sleep AND working full-time during the day in the house. I started to get very resentful of the fact HIS sleep was uninterrupted. THAT wasn't fair at all.

Finally we sat down and I asked, "How many hours of sleep do you need to function?" He said 8. I said, "Too bad...I can't get 8. How about 6? Can you function with 6?"

So he would sleep from 7-1 during the day, then he'd be up to help some around the house. He just wasn't comfortable dealing with the tube issues, but he HAD to learn. What if I got sick? What if I had to leave? And then there was time for me. I needed that, but how could I get it? Finally we agreed that one evening per week I could have to myself. I would usually just go to my friend's house and watch a favorite show, or something along those lines. Or go to Walmart alone. I LIVED for these evenings! They kept me alive!

Yes, your husband works full-time to support you, but he gets a BREAK. Where is YOUR BREAK? Nobody can work 24/7 without a break, and you can't expect to be able to either. I would love to suggest to you to move to MN, except that your family is all there. Even if MN is too far away, is there a nearby state that has some benefits? Yes, family is important, but if you're going to come to financial ruin because of the medical costs and the stress of it all, how important is it to stay? MN has so many benefits available for kids with DS and high medical needs, none of them based on income but on the CHILD's income. There are many other states with the same services. Rhett would be able to get not only 100% insurance coverage, but nursing care as well, allowing you to have something left of yourself for your other kids, your husband, and yourself!

Angela's dad and I didn't survive the stress, and divorced when Angela was 5. I don't want you to be one of those statistics. If it were me, I'd be researching which states could help us and MOVE!

Dawn said...

Pam I wish we where closer I'd help you out. I can't even begin to say I know how ya feel I only have 2 and Eian Doesnt have all the issues you have to deal with, with Rhett. But I do know what it's like to be the only one doing everything anytime you need to vent I'm here.

Ann said...

I too wish I lived closer and could come help you out. Just know that I care about you and I'm praying for you and your family!

Brynn said...

Hey Super Pam,
You're entitled to a break down every now and then... But I know you, somehow you pick yourself up, find this internal strength you don't even know you have and move forward... Sometimes a little sluggish at first, but then you pick up the pace and you are back to being super mom... Wow it amazes me every single time... Andy can't help it that you are sooooo dang good at what you do... No, it isn't fair, and sometimes we feel a so spread that our seams will surely bust... On those days holes are okay... Just don't forget the laundry can wait. Mac-n-cheese is okay for ANOTHER meal... and your babies won't be babies forever... YOu are an amazing mom.. Many would give up in your shoes... But you DON'T, you just keep on going... We are thinking about you... Much "HEART" LOVES...

Kyle, Aimee and Ava said...

Pam, I really think that you're being too hard on yourself! You're a GREAT wife & mother!

Kitty, Nathanael's Mom said...

Pam? I'm so sorry you're feeling the burn out. Do you have any Personal Care Assitant funds through your state or anything? I wish I could give you mine! I have over $800 to pay for a pca yet really, he's in school 3 hours a day so I don't really use it much. Or have you had that and burnt that out too? Dang girl! Sometimes I put too much responsibility on one of the kids but you know what? Think about the pioneers bringing their families out west. Those kids had some caring for siblings to do. I'm not saying it's the best but it's not the worst either. Definetly have a sit down with Andy, tell him not to comment until your done. Saying things frantically (like I did) or in tears doesn't get heard. What gets heard is a well-thought out..when you get time to.. discussion. don't accuse or anything, just say hey we need to brainstorm and come up with solutions. Share the responsibility (like you have to with kids) and try to glue those frayed ends on your rope.

Love ya, Kitty

My Three Sons said...

Pam, I know how you feel. Carson had 21 dr appointments from Sept through Dec 3rd and I asked Charlie if he was planning on helping a little and he said why? His ex wife takes his daughter to her appointments. His daughter doesn't have any issues except for the occasional cold. So I have been taking care of Carson full time while trying to take care of my older two and doing so with little sleep.

It's okay to be mad at the situation. Please don't be mad at yourself. You can only do so much and maybe Andy can help out as well.

I know I used to work nights but I was still up 6-7 hours later and spent as much time as I could with my kids until it was time to work again. I hope you and Andy can find a medium for you. The way I see it is it takes more than making money to help be a family.

Pick your head up and be proud of yourself. You have done so much for your family and I'm sure they all see that.

Take care,


datri said...

Like they say, if mamma ain't happy, no one's happy.

Take care of yourself, you have to do it. I have an online friend who nearly killed herself because she was the only one taking care of her son with severe behavioral issues -- her husband had left her.