I think one of the big problems with chronic pain is that at some point in the day I run out of patience and physical stamina to do anything else so when she comes home from school, I am already exhausted.
I decided that I need to focus on what's really important - cook that whole dinner from scratch and have clean laundry or spend time with my daughter playing.
I think playing is more important.. I need to try schedule my day to spend more time with her instead of doing chores.

Aronia ,
Thanks :) I feel you! How many kids do you have and how old? Do you work outside of the home? I ask because I just have one, a 3 year old daughter, and I am fortunate enough to get stay at home with her. What are these cooking and laundry things you speak of??? (Wink wink) When someone asks "what I do" for a living, I officially say that I'm a stay at home mom...but I am not a housewife or homemaker in any way shape or form. I'm super lucky to get help from a housekeeper once a week, but until she comes, the house is a complete disaster zone...no laundry being done...cooking is almost completely obsolete, and I just basically ignore any household duties that don't involve direct care for my daughter. I use any sliver of "positive" energy for all things Jordan (my daughter) and just figure out the rest later.

Were you suffering through this stuff even before kids?

For me dealing with a child and having Chronic Pain when I was younger was easier. I didn't work outside of home as much because my son was born sick also and didn't go to daycare or preschool. So I was home with him until Kindergarten.

My 2nd son was born when I was 30 and unfortunately during his 16 years of life, I had surgery every year of his life, 20 surgeries during his 16 years. I'd had surgeries during my first sons life but not as many.

I also worked during my 2nd childs life so it would get interesting balancing 2 kids 9 yrs apart, constant surgeries/recovering from surgeries, working from home then in the office when I could...it was a little insane most of the time. I also was lucky because I had a housekeeper then, there was no way I could keep the house clean, it just wasn't possible. We made certain things standard like family game nights, every Monday night we played Board Games and that didn't change, ever. If I was in the hospital my now ex-husband or grammy would bring the boys to the hospital and we'd play Board Games. We went on 2 vacations every year, to get away from the hospitals and Dr.'s and therapies and all that "sickness" stuff. Since my kids literally grew up with me in and out of the hospital and dealing with one illness or another they understood that it was a part of our life, so they didn't expect anything different. We didn't lie to them about things, we didn't try to hide anything from them, we were just honest with them and we had 2 incredible caring, compassionate well-behaved kids that never gave us a moments trouble. By being honest with them about my illnesses, the boys understood if I had to go lay down for a 1/2 hour and take a break, they didn't just think I was sleeping all day. They understood that if we went to JumpZone, I sat on the side and watched because I had to, not because I didn't want to play with them. Kids can get some strange thoughts in their heads when they see things going on and they don't know for sure quite what's going on.

My advice is do what you can, but don't try to be SuperMom. Be honest with your daughter in age appropriate ways, so that she understands that you do have some limitations. And don't "hurt" yourself because you feel guilty and feel like you should be doing "x" activity with your daughter....as mom's we think we're automatically supposed to be able to do what they want. But if you ignore your body and just do something you know you shouldn't and hurt yourself, then you just take yourself out of the picture for a longer time.

You sound like your doing a great job with your daughter, and she's very cute.

Take care,

OCP

I have two children, one in middles shool and one in highschool.
I work two part time jobs which basically add up to anywhere from 24 to 46 hours per week. I work 8, 12.5 and sometimes 16.5 hour shifts primarily on my feet, walking, lifting and pushing.
It takes a LOT of work to get through the day... Usually I am covered in lidocaine patches and by the time I am done with my shift, I am ready to lose my s--t.
I did not have many medical issues before I sustained injuries and worked 2 jobs - a full time and a part time job for 16 years...

Aronia you've got your work cut out for you, I don't see how you do it. That's a lot going on.

OCP

I find that as my Daughter grows the challenges evolve with her interests.

Oh man, Salto, I already figured that was the case and I often think about things on the future like that. I know I can evolve and adapt to new stuff as it comes our way, and I'm not afraid of that part, but what does make me on higher alert is "educating/informing" my daughter on this chronic pain thing that her mom is experiencing. Meaning that (as we all do) I want to express what I'm feeling emotionally and physically in the most positive/productive/healthy way possible because a huge fear of mine is for her understanding and overall knowledge of "mommy lives in chronic pain" to be this big negative cloud that just kinda follows us around. I know there's no right or wrong way to do this but it feels scary because it's just like this gross invisible poison that most definitely taints all aspects of my life, and as a mom I want nothing more than to have her surroinded by as much positivity and happiness as she goes through her own life experiences...not having anything dragged down by anything that is going on in my life. I want to be as honest and truthful with her as possible without ever letting her feel sorry for me or feel pity or whatever.

Hi Jordan, welcome!

CP and children = how creative can you be???? Life became a great big game.

I could not lift over 5 lbs. My smallest child started out at 7lbs 6 oz. I found the octagon play pen that you can put together. I put 2 together so we both were on the floor. They learned to crawl into my lap for hugs and story time. We each laid down on our pillows for nap time. As they grew they learned how to climb into their strollers, and how to climb into their car-seat etc.

I divided their toys up into 4 boxes. Each week I would switch the toy boxes. This way they did not get bored with the same toys and it was a smaller amount to clean up. We played the clean up song from "Comfy Couch" and put away the toys each day. That way cleaning up was just part of playing, not a chore. By 3 the kids knew I had boo-boos and knew they had to give soft hugs and help carry things.

Cooking consisted of things they could help with. Making sandwiches was an easy one. They could wash salad greens and put in spinner, and spin the water out. Kids loved doing that. They used to have cookie dough in a round tube. I taught them the safety of using knives to cut the dough and place on the cookie sheet (I used butter knives, not sharp ones). They learned how to measure when making granola, and mixing it up, and how to put it in the pan to cook.

I did not make a big deal out of my challenges, so they did not feel cheated by it. By 3 I had my kids in different classes, I made sure I knew all the story times at the library and any other event that they could do and I could be the spectator. I found playgroups to participate in. Mainly we sang, made a craft, and the kids had playtime.

You do not have to be the one throwing the baseball, roller skating, etc. Find classes and events where you are there but not physically active.

Schedule your day to have quiet time and nap time. A lot of our errands became adventures. Draw a treasure map of the grocery store and begin the quest of finding all the treasures. Having to pick someone up was a quest for the "Black Knight" to rescue someone.

The crock pot was great because you just throw stuff in it in the morning and dinner is out of the way before you get too tired.

Enjoy your little one, they grow up too fast. :)

Jordan,

Hi, I understand your being worried about explaining your situation to your daughter so that she understands that you have limitations.

I found that giving my sons small portions of information at a time worked well for them, because 1. I didn't want to scare them with all the scary sounding medical speak, disease names and such and 2. they don't possess the brain capacity to remember large chunks of technical information at that age.

Because of my childhood and the people that called themselves my parents I always swore that if I had kids I would always be honest with them about everything, there just didn't need to be secrets between parents and children. I made sure my husband understood that also.

When the kids were old enough to understand what being sick meant we explained to them, each one separately because they were almost 10 yrs. apart, that mommy had diseases that made her bones and her blood and her brain sick. So she had to take lots of medicine and go to the Dr. alot. We didn't mention surgeries until they each had to go through the first one. We didn't mention Seizures until they each had to witness the first one, there's not really a way to explain some things to kid without scaring them and I didn't want them worrying. My oldest was easier because he had seen his grandma have seizures, so he we did have a talk with when he was about 8, but its still a really scary thing the first time. My youngest was prone to nightmares if he built things up in his head to be to bad or scary, so we didn't tell him things that he would worry himself about until we had too.

So when it got to the point of getting around and out and about not being easy to do we sat the boys down and explained that it was very difficult for mommy to go to the football field or baseball field, but I was very excited about their games so daddy or grammy would take a camera and record the games so I could sit with them later after they got home and they could tell me all about the good parts and what they did.

Grammy and Grandpa lived about 8 miles away from us so they were a big part of my kids lives. They loved their Grandparents and used to spend alot of time off with them. If I was having a rough day and dad was at work, grandpa would come and whisk them off to the batting cages or the golf course... Extended family can be a big help if you have them close to you.

We tried to make things as normal as we could and find ways to keep me included in the things that I couldn't physically go to.

We also took the boys to a well respected and recommended child psychologist here in town so that they could talk through any fears or things they needed to talk about. My youngest went for a couple months and he was fine, my oldest went for a couple years, he had medical issues of his own to deal with so he worked through quite a lot with his Dr. and it helped a lot.

I also encouraged the boys to ask questions if they had them. We tried to just make it a normal part of our family, because it was my normal life. It wasn't going to get better, it would get worse as I got older and they had to understand that we weren't waiting for a day on the calendar when all of a sudden mommy would be well!

To their credit both of my sons are very compassionate, caring young men. They are very community oriented and love to help others. My youngest loves to help older folks by doing yardwork and such for them. I think having to deal with the things they had to learn to deal with, be understanding about, etc. went along way towards that.

Now that I'm divorced I see my 16 yr old on weekends and we go fishing, and swim and play board games...and yes the boy can tire me out, but I love it and I wouldn't change it for anything. My oldest is married with 4 step daughters so I don't see him as much, we talk, text and message, but he's got his hands full. But I'm definitely proud of the young men my boys have turned out to be.

You have gotten a lot of good comments which gave some excellent suggestions already. Being a stay at home Mom is great, but without a plan for each and every day which considers you and your CP, as well as Jordan's needs for her age and development, you could be like a ship without a rudder and going wherever the wind (CP) takes you. Having a plan will give you a good amount of control and would leave you feeling confident of being a good/great/awesome Mom.

One thing you've got going for you already and will be beneficial for Jordan, is that her Mommy cares and you are there and in the present moment "with her" and not just there like a piece of furniture, and that kind of presence shines through loud and clear to any child. From what you said in OP, I gather that you are already doing a bang up mommy job, and probably already doing more than many other moms would do, but you aren't feeling as a confident Mom. It is a full time job and is the most difficult job one would ever have to do. You are fortunate that your husband is a good man and from what you said in other comments that he is there and in the moment for you both.

You're responsible and you and your husband love your daughter and it shows. Part of being a Mom is that we often feel like we cannot do enough for our kids. These thoughts are common for parents. But, it is those doubting of self thoughts that can drive us up a wall and can lead us to feel and be less of a parent than we'd like to be. Take a step back and count the good things you are both already doing for Jordan. Those things count.

Using planned distractions that are positive and learning experiences for Jordan would be good. One thing kids love, is to experience and learn. It could be you, reading a story, which would give you a rest from the physical part of the Mommy job, or watching a larvae turn into a butterfly. Taking a 5 to 10 minute breather with Jordan on your bed or divan, just relaxing and chatting with her, giving her a kid style massage that she would come to enjoy, will give you a bit of a energy restoring rest before you get to follow her around during her most active moments might help you be "there" more fully.

One thing we do for the kids in Church is to anticipate when they first begin to become distracted from one task, you distract them onto the next task. Task not as in work, but in learning and doing, doing planned things kids love to do and are age appropriate. Your list will change as Jordan grows older.

Part of the problem is that unless you plan in advance for your CP as much as possible then you could be left totally exhausted and not be of much good for her and making you feel less of a good Mom, like the rudderless ship. Planning things to do and experience that don't take up all your physical or mental energy. This plan does not mean being regimented, but flexible for your CP and for Jordan's growth and development.

Consider making a list of the things which Jordan likes and then refer to the list when you are feeling "short and impatient or CP hits hard" and pick the least demanding of you and saving the more demanding things for when you have energy and CP is minimal. Having that list handy, will help you quickly decide what you can do for her next without totally taxing your strength or patience. I get it, about the CP causing short tempers at times too. For those times, a plan is your best defense toward your goal of being the Mom to be remembered.

One thing about kids, and whether the house is clean or the laundry is done, or not, the child doesn't care. What they do care about, and will remember, is that you were there for them and were actively "in the moment" and were really listening. Getting a child talking about "things" of life, things they learned, their emotional feelings, can give you a physical rest but it is mentally challenging of you. Again, fortunately, mentally challenging when you have CP can be difficult but it would also be less physically challenging. Something a CP-er needs at times for finding that balance between physical and mental demands. Actively listening and asking pointed questions can start Jordan into a streaming conversation that would be fun for you to listen to. Not only is getting her talking good for her, but helps her to process feelings which is something many children don't grow up learning how to do--that is HOW to share those inner feelings and having the ability to verbalize feelings good or bad. Those could be priceless rewards for you, and certainly for them, as those will be the things they will look back on when they are older and will reminisce, "My Mommy gave me a good life, and she always listened and I know she loves me." Being able to openly share feelings when older would be stellar when in an adult relationship.

Everything you do now, for Jordan, she will grow with and will be part of her destination as an independent healthy and emotionally strong adult. Teaching her to be in touch with her inner self and having the ability to know and reason the right from the wrong and the why's of that and to be able to voice her feelings to friends or partner will keep her strong and happier. She will model almost everything you do now so let it be good stuff.

No matter what, planning for, and being in the moment will be your best defense against the awful feelings or thoughts of you aren't being the best Mommy ever, and will give you those daily rewards and the feeling that you are really being the best Mommy you could possibly be.

You will go to sleep each night, without doubt of your Mom-ness, but from knowing you were there for her all day and you will have restful sleep and wake up the next morning with a feeling of confidence that you can get through this new day, very well and will be able to smile that Jordan had a good day, a happy day yesterday. You made that happen, and you'll do it again today, and the next, and the next and so on for many years to come, and for that, you will know that you have been, and are a great Mom.

That was beautiful, WhyNPain2. I really got a lot out of that.
Thank you.
Salto

RJRelaxing and WhyNPain2,

Thanks so much for taking the time to share those things with me/us. It's so nice to hear from others living with CP, but even more meaningful to hear from other chronic pain mom and dads. It of course saddens me to learn of other CP mom and dads, but it is weirdly comforting and reassuring at the same time. Especially when it comes to invisible illnesses like CP, I feel so completely alone and in my everyday life because finding others struggling like me seems as uncommon as finding a unicorn. Having you guys kind of rally around my concerns on this original topic makes me feel less alone...so thank you! Anything you are willing to share, whether it be a specific example or a larger generalization, is truly meaningful to me. Please feel free to continue sharing if something comes up or comes to mind because I'm all ears!