Any disabled/chronically ill parents out there?

[Silverbird]

Hi all,

dh and I are ttc and I would love to get in touch with any parents who have a disability or chronic illness.

dh has a spinal tumor and it would be great for me to here about how anyone with mobility issues or cancer deals with parenting.

anyway I can't see any other area for disabled parents so hopefully we can meet here.

Silverbird

[Dakota's Mom]

I have five adult children and an 8 year old. 16 months ago I had cancer. I had surgery on June 1 last year. Then I went through months of chemotherapy and radiation. It was hard. My little one was only 6 when all this started. I remember one day when he said, "It sure is hard having a sick mama." He grew up way to fast last summer. He learned to do some microwave cooking. He learned to run to get the puke bucket. He learned which bottle of pills were for pain and which was for puking. But we survived. They say "What doesn't kill us only makes us stronger." I'm not sure if he got any stronger or not. He did learn how to help. He learned how to deal with anger. He learned about grief. We homeschool so he didn't have a break from me and my illness unless someone came and took him out for the day. Fortunately for us, that happened a lot. We have a great homeschooling community ho helped out with child care for all of my doctor's appointments, taking my son out for the day so he could play and be a kid, bringing in food, even stopping my to wash the dishes.

I have arthritus. The chemo affected my arthritus so I have a hard time getting around. But he makes the best of it. He loves to push me around in a wheelchair. He loves helping.

I am a much older mama. So when he was a baby I could not get down on the floor to play with him. That was just normal for him. It didn't effect him in any way that I know of.

I don't know what other info you want to know. But this has been our experience.

[Silverbird]

Thanks for posting.

I guess I don't really want any specif info I just wanted to chat. I don't know anyone IRL who is disabled and a parent and dh doean't like support groups etc so it's just good to know there are people put there getting on with it I guess.

How r u doing now? do u have any kind of an "all clear" or are u waiting to see if it comes back? I guess thats always one of the hard ones for us wondering if/when the tumor will grow back and we have to learn how to live with his level of mobility all over again.

I'm glad to hear you have such supportive friends. they made all the difference to us. do u have a partner or did u manage all this alone?

anyway good luck

[Dakota's Mom]

Kids really do adapt to their surroundings. So your baby will be fine with whatever level of mobility daddy has.

Right now I am in a wait and see mode. I have cat scans every six months and will have for two years. I just had one on Wednesday. I will find out the results on Monday. I had an extremely aggressive cancer but it was all self contained in the uterus so we may get lucky and it will not reoccur. My doctors won't give me a definite answer. But as you know, there are no definites with this disease. When I searched online all I could find was a 5% 5 year survival rate. But my doctors told me to stop looking at the info online because each case is different. At any rate I'm hoping to be one of the five per cent. I have this little boy to raise you know.

I am married but.... I get my support from our homeschool group. My husband only took two days off work through this whole ordeal. That was the day of the surgery and the day after. We would not have made it without all the outside support we got.

Kathi

[Silverbird]

Thanks Dakotas Mom. I know that kids adapt well. In fact many of the kids I've worked with that have disabled siblings really gain from it. But I know this is hard for dh to feel.

Good luck for mon! dh has a scan mon and results thur. we're not hopeful.
Remeber that the only you are cancer free the more likley you are to be in the surviving percentage.

I'm glad you have good outside support. Our friends and family have been amazing. I guess that helps me to feel that we will mangage and have the support we need if he is ill while I'm pregant or have a small babe.

Good luck again and thanks for posting!

[Dakota's Mom]

Just wanted to let you know that I had another great report yesterday. Still no sign of the cancer returning. I hope it stays this way.

Sending you positive thoughts for a good report for your husband this week.

Kathi

[Silverbird]

:j oy

I'm sooooo please! I hope things keep going well!

I'm afraid a good scan result on fri would actually be a bad outcome becuase then we would have to wonder what else has made him loose the use of his legs! but we'll see.

thanks for thinking of us!

[Silverbird]

PS I just notice your area. I used to live in Highland Park, New Jersy but I've no idea if thats north or south!

[laohaire]

Sometimes I wonder if my DD was chosen for me (or chose me herself) given how well her personality fits my disabilities. I have low vision and hearing impairment (am legally deaf-blind), and certain children would be so difficult for me. Like bolters - I am physically capable of running (I jog on defined tracks, for exmaple) but can't visually follow a child while watching the ground to make sure I don't kill myself on a curb, fire hydrant, tree root, parked (or moving) car, etc. My DD NEVER bolts and always hangs around me. In fact, I do visually lose her frequently anyway, and if I say "where are you?" I ALWAYS get a little voice piping up right next to me saying "right here, mama."

I also worried about having a child I couldn't understand, because small children tend to mumble and speak softly. I really can't understand them. I just happened to have a child with oustanding verbal abilities, and she has always spoken clearly. Sure, some of it is just because it's easier to understand YOUR child, but when DD was younger people would comment on how clearly she speaks.

What are the odds, you know?

[Silverbird]

Thanks for joining us laohaire.

Thats really intresting what you say about your dd. I reminds me of experinces I've read of other parents with mobility problems who've said that their children naturaly don't squirm on thier lap or run off even if they can't hold hands. Maybe out children are chosen for us or mabey parents smoehow signal what they need.

Certaily the whole todler running off seemed to be the hardest part from the perspective of wheelchair parenting but maybe it won't be an issue.

Our news is as expected that the tumor has regown. dh just faces the idfficult dession about whether to do more chemo or not. I think he'll go for and we'll put of ttc for another year.

Silverbird.

[Dakota's Mom]

I'm so sorry to hear about your husband. But at least, as you said, you know what to expect. I have said that if my cancer returns I don't know if I would do chemo again or not. It was so awful. But I have this little boy to raise so I'm sure I would do it if I had to. I just hope I never have to face this decision again. I hope things resolve quickly for your husband. And that he tolerates the chemo well. Some people have little problems with it.

My son was a runner. When he was a toddler we had to walk about a block on a very busy street from the parking lot to the day care and the building I worked in. I bought a harness so he could run but I could be sure he did not get in the street and hit by a car. One of the older children in the day care asked me why I was treating my son like a dog. I told him that he wore the harness because I loved him very much and did not want him to get hit by a car. After that, he thought the harness was a wonderful thing.

It does seem that children know the limits of their parents. My son never expects me to get down on the floor or play ball outside. But he does expect my husband to do these things. He also never asks Dad to take him to homeschool activities. But he expects me to take him to all of them. He knows what each of us will and will not do.

Kathi

[Silverbird]

Thanks Dakota's mom.

We're very lucky in that this tumor is unlikley to be fatal but it does make the dession all the more difficult. The last type of chemo he had was awful but maybe this type will be better. He's pretty much thinking of trying at least one cycle.

I've always throught harnesses had their place. It seems ashame when you see a little kid in the park and their straining to go expore but stuck on them, on the other hand they would seem to offer more freedome than handholding in crowds. Did you use a wheelchair when using the reins. I'm trying to think how that would work. I can't really think of another way of managing it from a chair unless they would sit on your lap or could be trusted to hold the chair. Do you think a buggy board would fit on a wheel chair?

Silverbird

[Dakota's Mom]

Eight years ago I was much healthier. I didn't even use a cane them. I just wasn't very fast. Even now I only use a wheelchair when we are out somewhere that requires lots of walking. Like next week we are going to a science center. I will use a chair there. Otherwise I spend the whole day looking for the next place to sit down and I can't enjoy the exhibits. I use a cane to walk, especially for steps. I can't go up and down steps without a good hand rail and my cane. When I am shopping I use the electric carts if they have them. Or I have a chair that looks like a walker but it has a chair built in to it. I use it when I know I will have to stand a lot. Like in check out lines or at some of the historical places we go to visit. I can't stand for more than a few minutes at a time.

It's hard to decide whether or not to have chemo. It would be even harder now that I know what it is like. By the third session or so my doctor finally got the dosage right so it wasn't as bad. But the first two were awful. It effects your weakest parts. So for me that meant my joints and my lungs. My knees felt like they were being held in a vice for several days. Nothing helped the pain, not even percoset. For a few days it felt like every bone in my body was being crushed. But then the pain would go away and I would try another round. As long as I took the puke pills, that stayed under control. Sometimes I would stop taking them too soon. Then I paid for it. But I survived it. I was just so tired I could hardly get out of bed.

Good luck with whatever you guys decide to do.

Kathi

[illinoisgranny]

I'm disabled with lupus and degenerative arthritis in both hips. I'm also the relative caregiver for my grandchild who was placed into foster care in November 2008. I've had him for 22 months and hoping to eventually adopt or get subsidized guardianship. It hasn't been easy trying to care for a little bundle of energy. I found out early on that he has sensory processing disorder and he literally bounces off walls, floors, anything that he can find to throw himself into or onto.

The hardest part for me hasn't been my disability but dealing with my DD. It's an issue I usually deal with on the adoptive and foster parent boards. The emotional toll is harder on me than dealing with my physical limitations!

I'm hoping I don't have to have hip replacement before GS gets into kindergarten. So far I've been able to get by, but am on heavy duty pain medication.

Any support I can give and receive on this forum would be wonderful!

[musiclovinglife]

Hi everyone! I am not a mama yet, but would love to be TTC before I am too old. I am 29 and DH is 41. I have been in pain for the past 5.5 years due to congenital knock knees. I had a knee surgery, knee sprain, 2 hip bursitis (one current), OA in a knee as well as TMJ and overall body pain. It hasn't been easy for sure, to suddenly feel so old after being healthy...I feel that I am missing out on so much in life. I am not walking with a cane anymore which is good, but so many of my alternative treatments are expensive and tiring. I am getting orthodics soon, which I hope will help.

I am very worried about how I'll feel while being PG and how I will be able to be a good mother despite my pain and need to rest, but at the same time, I don't want to miss out on motherhood by TTC too old.

[Silverbird]

Wellcome illinoisgranny and musiclovinglife! I'm so glad you've joined us! I hope we can all give each other a lot of support in our little tribe!

illinoisgranny that must be such a hard situation for both. I'm thinking/praying for you both.

musiclovinglife I really hear what your saying. dh and I seem to have gone from mid twenty and healthy to 29/30 and tumor, spinal injury, chemo dmage and one ovary in the blink of an eye. Where did our health and youth go? we too our keen to ttc soon dh's health pemitting. dh did a course called The Expert Patient which covered all sorts of issues like dealing with pain, fatigue, other people's expaction etc. in a holistic way. It wasn't aimed at parenting but I imagine the teciques would be applicable and I know others on the course were parents. Is their anything like that in your area?

AFM - So I think dh has decided against the chemo. we just had a really good long chat with our onoglist who is great and really listened. We're getting a referal to the spinal unit (thankfuly the awful doc who was there has retired) and another to the fertility clinc and the doc is getting some second opions encase there are any treatments that have been overlooked. I must say I'm kind of releaved. I must say I hadn't been looking forward to another year of chemo/recovery. I really think it would be fab to get away from all doc apart for the minum assitance any spinal patient needs and any fetility help we need.

[musiclovinglife]

Thank you, silverbird! That sounds interesting! I'll look into it!

I pray that your husband and everyone here gets to heal!

[Silverbird]

I just wanted to post and say thanks to all of you for posting. I went to bed with a huge smile on my face feeling really glad to have "met" you all.

musiclovinglife I was thinking more about the stuff Dakota's Mom and I talked about earlier in the thread. I think it's very important that we don't feel guilty about "limiting" our children/future children's lives. Yes they will have some limits different to children without disabled parents but they will also have much to gain from the experince. All children will have differnt limits and gain that is thier journey.

For example maybe you find to get through each day you need to nap each afternoon. Maybe you will feel guilty that you lo's not going out to all sorts of improving actvites in the afternoon. Maybe they will loose out on that but maybe they will gain in other things. They will learn a lot in a quite time for reading and daydreaming that many over planned kids loose. They would learn about taking take of yourself, a skill many adults don't have. Mabey when they grow up they will surpise you by saying those nap times where you snuggled up for a story and sleep where something they always tresured. And if someone else can take them out when it's a really special afternoon activity they don't want to miss so much the better!

Just the thoughts of someon having difficulty sleeping!

[musiclovinglife]

That is very wise, Silverbird! Sorry I didn't reply sooner, I've been sick! I also had a horrible time sleeping last night as my hip was burning so bad...

Right now, hubby is unemployed so that is a major factor in our TTC timing of course. But when he does work again, I am not sure if we will wait another year for me to try to heal and lose more weight, or we will go ahead due to my ticking clock...

I saw my parents suffer from chronic pain growing up and turned out fine. I think it even gave me more empathy in life.

I just think I might have to do some therapy as it's been depressing to leave my 20's life as I knew it...I was singing on stage and having a blast, but now I just do treatments, put ice and heat on, rest...I do want to be a SAHM more than I want to be a performer, but it's been three years since my last voice lesson and I miss my former life.

Sorry about the novel, lol.

[illinoisgranny]

I'm sorry too that I haven't gotten back on the board until now. My problems seem so insignificant compared to others here that I'm almost embarrassed. I've had a hectic time the last few days with my GS who had to stay out of school with ringworm. I'd never seen it before and had no idea what he had until the nurse sent him home from school with a note. I thought he had a mosquito bite. It's no big deal, just a fungal infection. Why they call it ringworm is beyond me....just the shape, I guess.

Although I'm not nearly as limited as some of you are I'm on high dose long acting morphine because of my extreme pain issues and mobility with both hips and it's challenging trying to keep up with a hyperactive 4 year old.

Musiclovinglife, you have lived what was a dream for me as a younger woman. I'm in my 50's now but always used to dream of singing. I sang in high school choir and my husband used to play in a local band, but I never got anywhere.

I'm no longer married, but I see my ex often. We got divorced this year.....stress over trying to care for my DD's 2 kids did us in. I had her infant grandson until February, when I got so ill that I couldn't care for him (he was 7 months old then). He's now in another foster home but we get to see him regularly for sibling visits, at least as long as both boys are under DCFS control.

It was a heartbreaking thing. My ex felt so guilty that I had to relinquish my baby grandson and blamed himself. He couldn't take the stress of the kids plus the badgering my DD hit us with, trying to make us the bad guys. He still comes to visit, and I hope that maybe someday if this DCFS case ever ends that he may come back to me, but he's not in the best health either.

Sorry I'm writing such a book, but you all don't know me and I'm trying to catch up. My ex has severe COPD and had late onset schizophrenia in his 30's so his struggle has been hard, too. Luckily his schizophrenia is totally controlled (well, almost) with meds. He's not violent, but very suggestible and vulnerable. Stress is anathema for him. Now he has a cataract in one eye, probably from the meds he's on. The COPD is from years of smoking. We're from the era when smoking was still cool, to some extent. Now he's paying for it. The funny thing is, my lungs aren't in the best shape either, because of my lupus. I have a healed granuloma that at one time appeared life threatening. It was lupus though, not cancer.

Well, that's enough of a mini novel for now.I'll try to post in smaller increments in the future!!