How do I explain this to my child ?

Hi Stacy! Having 3 small children when I was diagnosed with Lupus, I saw many many days of missing out on their childhood. I tried really hard but many times I was just to sick to do anything with them. Especially school functions. I had no choice but to sit down and tell my children that I had an illness that kept me from being the mommy I wanted to be.
As long as I was in my home, I was able to be their mom and they had many friends over. We would make homemade Ice Cream, plays video games together and watched many movies together. But taking them out was hard for me to do unless my husband was around.
I felt the same way as you did! I’m much older now and my children are now grown and married except one and she lives out of town and teaches school.
I sat down and talked with my children and explained to them that I was very sick, but promised them that I would not leave them by passing away. But they would see mommy sick alot.
My children when smaller actually helped me alot and felt useful. Their teen years though were tough dealing with. But they adapted to me being sick and pretty much had a normal childhood.
My first child that graduated from high school. I begged GOD to let me be able to go and not be sickly. I got my wish too!
You will learn your do’s and don’ts with your children and take each day one day at a time. Excepting this will be much easier on you in the long run than feeling guilty.
I had to place it in my mind that I was not the only one in the world that had the same problem as I have. Then I thought about all these people in the world that have birth defects and get married to have children. They do things with their children as if nothing is wrong with them. Mainly because they excepted their disease and faced it with a fight instead of feeling guilty.
I find it when we are normal to then get sickly we end up feeling guilty or have pity parties.. for I sure did! It’s much harder to face than someone that has already been born with a birth defect. Mainly because we experienced a normal life until we got sick.
I had to except my problem and after I did, I was able to move around my problems by solving them in a different light. So my children got used to me being sick. They saw it alot while growing up. But each of them did okay. And had a normal childhood growing up. They knew I could not take them places and found other means of getting their way!
It is frustrating though. Very frustrating. And I regret missing many things with them at that age. But we managed as a family!

First off Stacy, here is a huge cyber hug. Secondly, Linda said it all. We ahve to learn to accept our limitations. There are things you can do and things you can’t do. Make the most of the things you can do. Find the things that you and Connor can do that do not require all the walking. Go to the waterpark with a friend you trust and let the kids play together there.

Kids know and understand much more than we adults sometimes give them credit for. In very simple language, tell Connor what is going on in your body. Help him to see through a child’s eyes what life is like for you. But most importantly, let him know that he is loved beyond measure. Tell him everyday (I am sure you already do:) )that he is the light of your life and that even though you can’t always play with him, watching him play brings you great joy! You have been sick for a long time. Connor can’t miss what he never had. This is the mom he knows and loves.

As to pity, we all hit that low spot. There are so many things that are left undone for you right now. The house, the vacation, not knowing when you are going to have IVIG and will it work, but the biggy is propably missing your mom right now and to some degree you are still possilbly grieving. (Another huge hug here) It’s okay to feel the way you do. Let it happen, have a good cry and then talk yourself into moving on for another day!

Stacy, if I have learned anything about you while reading the forums, you are a strong resilient woman. You will get through this. This too shall pass.

God Bless and I am so glad you fell safe coming here to share.

Has your doctor ever brought up the use of AFOs. My daughter wears them and she is able to walk almost normal. They have definitely helped her with her fatigue and she is able to go to the mall for several hours. Actually, she spent 6 hours without a break at the Mall of America in Minneapolis when we had to visit the Mayo Clinic. With her AFOs, she doesn’t need any other assistance. She also attends a large University where she walks every where. I understand the waterpark issue, as she deals with the same thing.

Hi my friend Stacey!!!
no pitty party here, just a mom who wants to play with her boy. I guess since Kevin is the one w/cidp my advice could not be accurate as I do not know exactly what you feel. (Kevin tells me that all the time, he says I am the closest to understanding compared to others, but that I could never know what it feels like every day to wonder what will be wrong or what will be different or good each day. Kind of too grown up for an 11 year old!)

BUTTTTT!!!!! I can give you waterpark been there in that position mom advice!!! Soooo….. Your little man is growing up now, he might enjoy hanging at the water park with a friend. Is it possible you could bring a buddy along and set rules about how far they can go (not out of your visual area) Could you ask the friends mom to join you? They could go on the slides together and you wait on a chait at the exit of the ride. I used to do that all of the time. Uusally the 0 depth pool leads to a regular pool, you could walk/then swim, float whatever you are able to do and play in those areas with Connor.

I always tell Kevin the truth, when I had Cancer, I told them, when his illness was presented to us, I told him, no sugar coating. Unfortunateley Connor will have to grow up in some regards quicker than others, but in the long run, the mature discussions about your illness and limitations will benefit him more than you can know now. I see it every day in Kevie. Talking to Connor openly and honestly with your loving hugs will show him you trust him to handle things and it will make him feel included and important. If he knows you have limitations before hand, he will not be disappointed. He might be sad some times, but you will figure out other ways to make up for it. I have become quite inventive with my older son Nick and having to make up lost time with him when I am with Kevin. Connor knows you love him and as he gets older he will be with his friends and the pressure will be off of you!!
Good luck, my thoughts and hugs are sent your way.
Dawn Kevies mom

Stacey,

I am sending a big hug your way and wish I could come and unpack your house for you. I’m sure its hard to have so many things up in the air. I know I always feel unsettled when things at home are out of whack and I’m too tired to fix them.

I’ll send positive vibes your way that you can get the ivig going and it will help quickly. Once you feel a little better, all of this will seem more manageable.

I know when I was sick originally it was hard on my kids. I don’t know how old your son is, but I have two teenage daughters (not driving age) that along with their father were used to mom doing everything around the house. Me being in the hospital for a total of 6 weeks was a rude awakening for them. Altho they have their self centered moments, they are working on trying to be more helpful.

Try not to worry about how you look with you cane! Own it and be excited about it, without it you can’t walk as well so let it be your friend. I know its hard, I hated using the walker, I felt like I was too young for it, but it allowed me to be a part of the things in my kids lives.

I also try to keep expectations in check, maybe a waterpark by yourselves was a little much. Like someone else suggested, bring a friend along so you can rest and relax some of the time and not have to be your son’s only playmate 🙂

Lots of hugs your way, and if you ever need additional support feel free to email me too! We all have pity parties now and then, they just aren’t any fun alone! 🙂

Marjie

Stacey-sending you another cyber hug!!! Agree with all the others, but I am so tired, I have to end here. Except say two-maybe three things.
1. Thank you so much for sharing with us and trusting us enough to know we will listen and support you anyway we can
2. Connor is 5-kids are so resiliant and Jan is so right, they know more than we give them credit for-I still hide my pain and illness from my son-easier for me because he is far away in the Navy and he is 37, but he still worries about me, and likely knows I am hiding things from him, I know he knows, but he is gracious and kind enough to accept this from me. I am honest with him and give him honest answers when he asks though.
3. And in ending, all Connor needs the most from you is LOVE, pure and simple. Do what you physically can, save your energy for the things you like to do, and rest when you need to. Kids are literal minded-answer simple questions with honest simple answers. He will accept this from you.
Emma

[FONT=”Comic Sans MS”][SIZE=”3″]Stacey,
You are the most amazing woman, to even attempt to do the whole Waterpark thing and you did really well so don’t beat yourself up, alright? You both had a good time and even if you had to just stand and watch Connor, i’ll bet the grin on his face from his accomplishment made your heart sing.
As for roller skating, that, like riding a bike (at least in the beginning) can’t really be taught, you just have to steady ’em make sure there’s a soft spot to land on and let ’em go
As for canes, well you know they can be pretty cool. This past winter when i complained that it was hard to negotiate snowy/icy walkways, an English Pal sent me two carved wooden canes with spike tips, and i have one that folds that i call Mr. Snappy. When the neighbor kids come to visit they all want to play with them, and my candy apple red 3 wheel walker, which has hand brakes just like a bike. So Stacey, if you need to use a cane, please use it, don’t try to be brave and get along without it, we don’t need you fallin’! Connor is a smart kid and proud of his Mom, so don’t worry what anyone else thinks.

Wishing you the best, Stacey. I think you rock![/SIZE][/FONT]

Stacey,
I have been teaching in middle school and grade school, including Kindergarten, for the past 8 years. I have been amazed may time with the ability of young children to understand the impacts of their parent’s physical limitation. Connor can handle it as long as you use simple terms to explan it to him so he understands that you have some limitation, but you are going to be around for a long time [God willing].

If you have to use a cane in a “fun” place or around kids, then decorate the cane any way you want to and make it something special. That way kids will look and ask who is the lady with the “cool” cane.

Going bare foot can be a problem. I have a pair of diving boots that I use. I got a few years back when the family when snorkeling. They work great at swing pools and they don’t seem out of place.

As far as the water side goes you should get a medal for bravery. I know I would not try it and you did it twice.

Stacy,

Just remember that Connor loves you no matter what. The fact that you took him to the waterpark & you tried your hardest to make it a great day for him is all that matter to him. He’s not going to look back in 10 years & remember that you had a hard time walking around. He’s going to remember the fun!

Chin up! You are a good mom & Connor knows that too.

Kelly

Hi there Stacey,
During my 14 mths living with CIPD if have decided my children have much to gain from me having CIDP.
Children were 2, 4 and 6 when i first ended up in hospital (that was to be my home forthe next 8 mths minus a few nights out here and there to keep me and the family sane) Children are now 3 5 and 7 and 7 yr old today asked if i was ever going to get better!!!?
Your thread makes me think back to a year ago and how my 5 yr old coped then. As all the other replys state, i too agree with how resilliant children are as well as how well they adapt to things to enjoy doing what you can together etc.
My capabilities ranged from full paraplegia to now pretty much normal but no matter whether nurses had to lift my children onto my stomach and then wrap my arms around them so i could give them a hug, or whether my 5 year old pryed and manipulated my hands and fingers to enable me to hold a hand of cards to play fish we still managed to laugh and have wonderful times. of these i am greatful for. You learn to appreciate things in a different way (i too was very physically active all the time with my family so felt deeply deprived learning to cope with these new limitaitons) and it is with great fondness i can recall our afternoons snuggled up with the draughts board, or doing lots of reading (children took turns at holding the book – and yes they do wobble it lots so is hard to read but means longer snuggling together etc).
As i became stronger and more able i would give the children a choice. This worked very well and if i currently have a fatiguey day etc i still adapt it and find it a win win situation. Basically i am honest with the children, they know mummies arms and legs got a bit sick and so now dont work like they used to. so if we are planning our day etc (there is always so much we want to see or do anyway even before cidp days) i give them the chioce of 2 events. ie to water world or feeding ducks. (Somehting you ARE capable of doing) Firstly this empowers the children, and focuses on the positive. then on the way there etc we talk about what we will do there and that is when i then say, mums legs arent that great today so i can either go on a water skilde with you OR in the lazy river etc and then let them chose. then when you are doing it with them they think you are extra cool and that time is extra special! at least this seems to have worked for us.
As far as canes and aids etc, dont sweat the small stuff. I was near fully paralysed when i was adament i was checking out of the hospital for a few hours to be with my daughter as she went on her first school visit. I needed a seatbelt in my wheelchair to stop me toppling over. All the children and teachers were asking what was wrong etc (elder son was already at the school) and they had always seen me running in and out with him. I had to fight back tears, as these were genuinely caring people, and try and make some sort of lighter side of the truth and not scare the kids etc. you get there, after a while we called my cane the paddy cane, as i could get all the kids then!!!!!!!!!! Is very hard to in reality as you are trying to balance your skeleton from toppling over but the kids dont know that!!!
Also dont go beating yourself up, parents always find somethng to feel guilty about or feel there child is missing out on, its normal. CIDP will give you more time for your son, more special one on one time. As a fully able bodied perosn i was often almost cutting myself in two running around like a headless chook doing this for this group or that for that group etc. Now i have refocused and go with the flow. I am still active in community groups but if the job doesnt get done today, there is always tomorrow. Also people only offer to help if they truely want to so accept it. Use all the help you can get so you can then focus on doing what you really want to with COnnor or your hubby etc.
Lastly (whew what a novel!!) i dont say i cant do somehting,ie when you truely cant make it to the dollar shop. I just say, yes i would love to take you there, mums legs are too tired today, we will do another day soon when they are stronger. Lets choose a game of ?? or ??? or ?? to play.
I also had a wee draw that friends and family would top up for me of dollar shop toys and activities so if i had no energy to get out etc it was my rescue drawer.
Hope some of this helps
all the best
and yes connor will amazingly love you no matter what. (and he will be so proud of you)

Stacey,

Just wanted to check in and see how you are doing. Hoping and praying you feel a little better today. Take care.

Stacey, you are awesome too! Have fun today and just let yourself enjoy every moment.

“Life is not measured by the number of moments we breathe, but rather by the number of moments that take our breath away!”

Find those moments. Keep them close and use them to get through each and every day!

Stacey, After I wrote you yest. I went and layed down and I thought about you and Connor and I kept thinking about the fact that you climbed that slide twice!! YOU did it. I almost got back up to write you then but knew I would today. I think you are a very special awsome mom to do what you did.

Even in my good days I had to say no to my boys sometimes, because I just didn’t have the money to take them places. But we survived nicely with board games and I took them swimming. Their grandpa and grandma spoiled them on weekends with a bag of pennies, their favorite pop and ice cream too. They weren’t spoiled from a financial standpoint, nor were they deprived either. And the best of all, they received love, love, and more love.

I hope you are not suffering too bad from the water park. Sounds like you can have a fun relaxing day with your family. Hope it went well.

Emma

Great thread! Brought back so many memories and feeling of knowing exactly what we all go thru. Time in the pool and the current sweeping us away! You were at the water park and I was in the rehab pool. I just told the people just push me out of your way, I am like a ship in the current with no engine to guide me around. But we DID IT! We did not leave our fears take control and keep us from atleast trying things. I read all these mesages and I can see we are all strong people. We all have our ups and downs. We worry about how others will see us. We all wonder “How do I explain this to my children?” There are still things that my Husband of 35 years and my Son (33) are clueless. I will have a brag and show them something I can do and they look shocked! They tell me I did not know you could not do that! When do you stop explaining? My big brags this year so far are I have less fatigue that just used to knock me down! I can sweat! I can do more in the yard this Summer in the flower beds. I can get up if I am in the center of the room or out in the yard without climbing up something or someone! The vibration has really almost disappeared, which used to eat up alot of my energy. I can now reach up in the back and adjust my bra myself. Still can not bring anything down from the top shelf, that strenght has not come back yet. But I keep testing it and still have things crash to the floor! When asked to do something, their reply is “you still can’t do that yourself?” I always laugh and say “Someday I will!” And I believe that! Just from your posts in this thread it shows how strong we really are. This is a nice group of people that really understand! Nice to have a group that can talk, laugh and cry with you! We do more talking and laughing here that really is a tribute how much time we put into this illness. Glad everyone was here for me! Now I can be here for others. I have learned so much from the CIDP frinds! Most of all 1. Patience and 2. Don’t sweat the small stuff. And 3. Don’t beat yourself up it could always be worse!

Kit and Jan and Stacey, I reread some of these posts again and now I am in tears…you are right Kit, we really are strong-I like to use the word empowered…..but my tears came when I realized that since I joined this forum in June, I have my friends back–all of you–all of my friends and family don;t truly understand my limitations and so many, except my one buddy, left me to return to their normal lives, and I really hate having to continuously say to someone ” I can’t do that” ” I can’t walk that far”–can’t, can’t, can’t——-and you guys listen and support–Jan, this is a moment that truly took my breath away.
Emma

Emma, this is true for all of us. It is such a challenge some days. More so for some of you than others of us….but regardless of how bad our limitations are, we all understand. And that bond keeps us together. No one can imagine who hasn’t shared in some of the issues.

I read a couple of your posts today. Here is a huge, huge cyber hug. Know you are priceless to many and I personally value your opinion. I look forward to your posts, questions and your sense of humour. Loneliness attacks all of us at some point. To me the forums ground me when I feel alone.

Take care Emma. You have had a stressful week and you need to rest.

Big Hug.

Thanks Jan for the hug. Going to try and go to bed shortly and hope for a better tomorrow. Take care and hope your week is better too–here’s a hug right back at ya……
Emma

Stacey,

I had, and still have to deal with the same thing. I have had CIDP for 20 years, the past 9 diagnosed, and each of the past 10 getting worse each year, this year spending about half my time in a wheelchair.

I was a PGA Golf Pro, working 60 hours a week. I enjoyed camping with my kids, playing with my kids, playing in the ocean with the kids on vacation, looking for another 30 years of fun with my kids and eventually grandkids.

All that changed.

When I was diagnosed my kids were 12,10 and 8. As they grew up, Daddy lost more and more physical ability. I had to talk with them about the disease and “if they would catch it.”

What did they understand? I don’t know, but I will ask them. They are 21,19 and 17 now and have seen me through all of the changes. My youngest one told me earlier this week, “No Daddy, don’t help me with the mulch. I wanted to know where you wanted it and how thick to put it down. The last thing I wanted was for you to get outside in the 95 degree heat and help me, I can do this by myself.” Today the kids are driving 100 miles one way to help the oldest son move at college. They did not want me to come along.

Part of it makes me sad that I cannot help my kids do those things and be with them for some of those things. But on the other hand, they have become independent enough, and have stayed good friends enough to help each other do things. I feel so happy about that.

We have talked about Auto-immune diseases, the chance that they might have auto-immune exposure, what to pay attention to, and things like that. I believe they are aware of it. I hope they are not scared of it.

I love my kids so much. My wife has been great and I would have no other life partner. I value my family relationships above all else. What else can we impart to our kids? Independence, love, caring, friendships, as well as the desire to do the right thing in work, make good choices, do what they want, and enjoy life.

So, … … … Do what you can, rest when you need to, let others do when you cannot, and love your famliy. Everything else will take care of itself. My kids were, age wise, where yours is now. I felt so-o-o-o-o bad then, like you are now.

Hang in there, be positive, and it WILL turn out alright. You obviously care about what is happening so much. That will make all of the diffference. send me a note if you want to talk.

Dick S

[QUOTE=ConnorZmom]At the same time, I know it will be ok. I am the only mom he knows…he doesnt know what a “perfect” mom should be. I love him with all of my being and as long as I can do that, I wont give up and know that somehow he’ll be just fine with what I CAN do.

It helps to talk about it….and I truly thank you for sharing your story with me.

Stacey[/QUOTE]

Sure, he knows what a perfect mom is and its you!!!!!!!You have some guts going to a water park. When I went to the hospital w./ GBS in January, i had a 6 month old and a 2.5 year old. I was in the hospital total of 3 months. My baby hardly knew me and it was HARD. They are now 1 and 3. My 3 year old knows mommy has boo boos on her legs and everytime he sees me walk w/ the walker he gets excited and says mommys walking, are you all better?!
It breaks my heart b/c i cant drive and go places w/ him really. I try to have his friends over weekly, but its hard. This Diagnosis SUCKS, but we have to make the best of it and it sounds like u are!!!!!!

Hi there, thought it might help if i posted what got me through my worst days. On really bad days to help keep perspective i always had two thoughts that would keep inspiring me to keep going.
1) At least this is happening to ME, and as hard as that is and as much as i CANT do for my children, ATLEAST THEY do not have CIDP. I can find the strength to get thru this, wearas if my child was in my position I dont know how I’d cope. (I know there are amazing mums here on the forum with children with CIDP/GBS and i take my hat off to them.) I would always think Im glad its me paralyzed and missing out on life temporarily opposed to my child lying in the bed!!!
2)There is ALWAYS someone else in a worse situation, AND usually you never have far to look to find others worse off!

Your children will be stronger for you having CIDP, it will teach them other important life lessons etc!!!!!!
take care, and take time to smell the roses!!!
kiwi

I don’t have children, just dogs, but I have lots of nieces and nephews, friends with kids etc. so many I really don’t need my own children. And actually I never grew up anyway which is how we ended up calling my walker and cane “monkey bars”. At some point while I was lying in the hospital barely able to move an eyelid it became very humiliating to me that my legs were so fuzzy (weird the things that go through your mind when you think you are dying) and a friend got me a bunch of fuzzy stickers with monkeys on them to sort of make fun of me being so vain when I couldn’t breathe. They somehow made it from all over my hospital room to all over my walker, cane and chair lift so I have fuzzy monkeys all over my monkey bars and if you think that doesn’t make kids want to play with them!

For myself, and to make them less of a barrier for the kids, I tend to call the walker and cane either my props, my monkey bars, or my bionic extensions. The AFOs are my moon boots, my magic metal, or my Borg implants, depending on which nephew I’m talking to. I don’t use the wheelchair as much as I used to but when I did it was the limo or the shuttlecraft. I trivialize their role in my life by giving them fun, silly names and fun, silly decorations and I let kids play with them as much as they want so that they lose their fear of people who use them and so they become more comfortable with people who different. I figure if I’m embarrased by them then the kids will learn that too so even if I AM embarrased to be tripping around in moon boots at a swimming pool I tell the kids I’m lucky because I have super boots and toys and props that go everywhere with me and AFOs are especially useful for kicking teenage butt when they get a little rowdy. 😉

Find the good things in it, if you can’t find them then just make something up, or let the kids make up stories. I have one nephew who is great at coming up with all kinds of stories about my toys (did you ever see the movie The Transformers? that’s where he gets a lot of his material from…)

I’m psyched you did the waterpark, I feel as if I’ve been challenged! Thanks for sharing the story!

Julie

I think the most horrible time I had when raising my children was the fear of not being able to attend their graduations and weddings. But somehow, some way it became possible! My children used to bring all their friends to my house! I noticed it alot when I felt bad. So they would invite their friends over to my house. I was never lonely!
Even had a few runaway’s come to my house. I would call their parents and let them know they were over at my house and they stayed a few days with me. But I managed talking them into going back home!
Never thought I would see the day of becoming a grandmother and somehow I did!