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Any disabled/chronically ill parents out there? - Page 2

post #21 of 46
Illinoisgranny, don't ever feel that your stuff is less significant than other people's. We all have different issues. But to each one of us those issues are just as serious as the next guys. I admire you for taking on a busy two year old. Especially a two year old who has been through so many issues and disruptions in his young life. And you have been there for him for nearly two years now. You have given him so much stability that he would not have in the foster care system. Had I known what a turn my health was going to take 8 years ago when I adopted my son I probably would not have done it. Fortunately we don't know what the future holds. I am so glad that I have my LO here every day. He is such a great help to me and I hope I have given him something as well.

Don't feel guilty about the baby either. You did what you could for him. And allowed him to be placed where he could get the care you couldn't give him. Thirteen years ago, I was newly married when my son's children were taken away from him. He called asking me to take custody of them. But at that time I just didn't think I could help him. For one they were over 1000 miles away from me. Secondly his wife's family claimed they wanted the children and they had a great deal of money to fight things out in court. And, like I said, I was newly married. How could I ask my brand new husband to take on two small children who had probably been sexually abused and all the trauma that went with being removed form their parents and placed in foster care. I felt a lot of guilt over that. But I did the best I could under the circumstances. That's all any of us can do, the best we can under the circumstances.

I hope for the best for all of us.

Silverbird, I'm sure your husband made the best decision for himself as he could. I have often said that I do not think I would go through chemo again if my cancer returns. But then I have this little boy and well shall we say less than perfect husband, who I would not want to leave my son with. So I need to kick and fight and scream to stay alive at least until he is old enough to take care of himself. Fortunately so far, this has not been an issue. Hopefully the cancer will never return.

Be well my friends.
Kathi
post #22 of 46
Thanks, Kathi. You've made me feel a lot better. I have a habit of putting myself on a guilt trip. Today is visit day and Wildchild is literally bouncing off the walls. I wish we could get TPR so we can all go on with our lives. This limbo is so much torture!
post #23 of 46
I my former life, (Before this child) I worked as a social worker in drug rehab. All of my clients had DYFS cases. All of them had children in the foster care system except the very young ones who only had the one child they had in treatment with them. It was so hard to watch what these foster parents went through. I went to a bonding eval one time. The poor kids had no idea who the mother was. They had never lived with her and had gone long periods of time without even seeing her. Yet they were required by the state to have these monthly visits. It was really hard. I remember one family who came to visit every other week. The mother really didn't care about them. She had the cute little cocaine addicted newborn that she had in treatment with her. The foster parents loved the girls and wanted to adopt them. But the mother fought to keep them even though she didn't even play with them when they came for visits. In the end the judge terminated her parental rights for the two girls. She had 8 others who were in permanent relative placement. All she had any hope of keeping was the newborn. It was so sad what these little ones go through. I hope it works out for your permanent relative placement or adoption.

Kathi
post #24 of 46
Thread Starter 
Hi all,

New rule for this thread: No apologising for not posting. we are all busy and no need to feel shame for having a life IRL.

I really hope we can be a place for all of us with disabilites or health problems large or small to share.

My dh he doesn't feel concented to spinal injured people becuase his is not from an accident, he doesn't feel connected to people with cancer becuase his tumor isn't "cancer". he found a forum for people with spinal tumors and still no-one has an experince exactly like him. Me I feel connected to disabled people, spouses of cancer patient, spouses of injured people. I feel for all of us who share share some aspects of the same stuggle.

Thanks for stepping in Dakots's Mum you've said exactly what I wanted to. I often think that just saying "I can't" if often the best thing a parent can do for a child whether that is a Mum asking for help, not taking on a kinship placement or even placeing your child for adoption. What is important is that the child's need are met and I think it's the braver parent who will see that they get help before a child's needs go unmet. Yet society will look down on them and not see the brave and loveing thing the've done.

I'm really thinking of you and your grandson. It must have been such a horrible time in your life. And your ex having mental health difficulties too! I'm praying things look up, you get some resolution in your case and maybe things work out with your ex if thats whats ment to be. Don't ever be down on yourself, many people couldn't have coped at all you've been through.

musiclovinglife thinking of you and your ttc journey.

Dakota's Mom - thanks yes I know he's made the right dession. really what ever he decided would be right you know. I am relieved not to be dealing with chemo again.

AFM - So disabled access is making me want to scream! Poor dh had to phone about 30 hotel which claimed to be wheelchair accessible but either had steps to get to the room or no adapted bathroom. As he said "do they want to me to sleep in the hall and piss in a tea pot?". Of course if he could walk we could just stay at his nan's for free. So I've been looking a brochures for center parc's thinking a holiday will cheer me up. they are a modern well known chain so I was sure they would have good access. But no he can't get into the pool and the land train for access round the sight is not accessible. As if being disabled isn't hard enough all ready. why should he have to go round so many hotels just to attend a funeral! It makes me so mad the way poor accesse disables him more than he needs to be.

I've just been feeling pretty blue lately. I thought once dh decided against the chemo and I got some stuff sorted at work I'd feel better but I don't. The last two years I really haven't spent much time thinking why us? But now I've got a big case of the "Why us?"'s. I just keep thinking of all the millions of people who graduate, get married and have babies, instead of graduating, getting married and havign tumors. I don't think I'll be able to cope when the next of our friends annouses their pregancy. I just keep crying. I'm hoping I feel better soon. I've applied to three new jobs which has been stressful but a new job would ceritanly help things.

hugs and healing to us all (and our spouses, prefect and otherwise!)
post #25 of 46
IllinoisGranny: Do you still sing? I find it a stress reliever! I hope the situation with your grandson improves, that must be so stressful. You have so many health issues that you need to feel free to vent! (and anyone here anyway!!)

SilverBird: Shame on those hotels who call themselves wheelchair accessible!! I hope you are able to find an acceptable one. How can they get away with this?? Hugs! I'm sorry you're feeling so blue about TTC. I am also annoyed at all the PG announcements and births. I am happy for them, but I thought I'd be a mom by now. I also wonder why me all the time, as I feel like an elderly with my health issues...I've been sick for two weeks and unable to do most of my daily exercises...DH still hasn't found a job here. Immigrating for him I guess has been stressful. He is learning French but I am afraid we'll have to move provinces as it's French predominant here...It just sucks as I live close to my parents.

I gained weight because of my health and have lost 16 pounds, but wish to lose at least 12 more before TTC, which is hard to do because I am limited in what exercise I can do. I just wonder if I should wait one more year in the hopes of regaining my life. I am sad I haven't sung on stage for 6 years...sigh
post #26 of 46
I do sing, in our church choir. It is a great outlet. I sing to my grandson every night, even though he's 4 years old. It's always been a comfort to him and I love singing.

Silverbird, thanks for giving me permission to vent. I often go to the foster parent forum to vent, but none of them that I know of have physical disabilities to deal with. My family is rife with them!

Thanks Dakota's Mom, for your reassurances. Drug addiction is one of the most common reasons why kids are taken from their parents. It's such a waste of lives. I saw my DD today just before GS went in to the visit room. She was wearing braids and I was reminded of the better days with her when she was in high school, such a sweet young girl then. Life has been hard for all of us, but it hurts me to see her throwing her life away on a drug addicted man who doesn't even try to get clean, and seeing her beautiful children only one hour a week. When does it end?

I'm going to try not to get into the Why Me's, but like Silverbird says sometimes it's just so hard not to feel down.

I hope the coming weekend will give me some down time. I'm planning to go on a drive up the Mississippi River road. In a couple of weeks it will be blazing with color, but I love seeing the river and it gives me such peace. There's a great playground at Pere Marquette state park where I'll let my grandson play before we turn around to come home. I'm really looking forward to it.
post #27 of 46
Thread Starter 
Thanks all. I'm glad I'm not the only one who gets the "why me?"'s.

My dh sings and plays guitar and I love to listen to him sing. He doesn't feel comfortable going on stage since he became disabled and his band split up long before then. But it's so good for him just to play with his mates and I love listening to him. So don't you guys give up on your singing.

illinoisgranny enjoy your drive it sounds beautiful.

musiclovinglife I hope your dh gets some luck with the job hunt soon. I'm job hunting at the mo and it's so stressful.

A while ago there was a work out DVD for people to use sitting in a chair out but I can't remember what it was called. Or could aqua arobics help? I'd be so fustrated if I couldn't excerise.
post #28 of 46
Aqua aerobics are great! I used to be a member of a health club and loved it. I need to join again!

Silverbird, we have another thing in common! My ex husband plays the guitar, too. He used to be in a band when he was in high school. He only plays in church now. He has written quite a few beautiful songs. I wish I knew how to get them published.

I hope everyone job hunting has some luck soon. It's a rough time to be looking for work. I'm glad I got my disability or I'd be in dire straits.
post #29 of 46
How's everyone been?

Illinoisgranny: I'm glad you're still singing! I saw the Met Opera at the movies last Saturday and it really made me want to take lessons again...I am feeling clumsy though with my legs pain. Hopefully I can be a singer in this life, or I'll be one in my next life! lol

Silverbird: Thanks, good luck with the job hunting as well! DH still hasn't gotten hired, sigh. I am sick again. I've been sick for as long as he's been at home. It is stressing me out!
post #30 of 46
Sorry you don't feel well, musiclovinglife. I had a great trip up the river road, went two weekends in a row. This past weekend we took a picnic and sat at the gazebo looking over the Mississippi river. It was a great day. Today I went to the doctor and I have protein in my urine again. My lupus is acting up.....
post #31 of 46
I'm new to this tribe. I've led an active life -- lots of traveling, hiking, swimming, hobbies, etc. Three years ago, when my kids were 15 months old and 2 years old, I got the flu and had a bad reaction, landing myself in the hospital with "severe myositis, expected to resolve within 6 weeks." As it turns out, that was the final trigger to developing severe fibromyalgia. Three years later, I use two canes to get around, and motorized chairs in grocery stores (the kids love that). I throw up a lot, don't sleep much, take a lot of pills that don't seem to do much, and have had to restrict our activities pretty noticeably.

My kids are 4 and 5 years old now and are pretty experienced at doing things like holding doors for me, helping to carry bags and books, setting the table, folding laundry, etc. We've been very clear with them that while Mama is sick, Mama is NOT dying, and Mama does NOT have "fibro germs" to share with them. DD has processed some of her concerns by saying that her legs hurt, too, and she needs canes to walk. We've done a lot of reassuring that she is very healthy, very strong, and can't catch this from me. DS is a runner, and the canes have come in handy for catching him when he bolts. They give me a good two-foot arm extension! He still climbs on me a lot, and that can be hard, because I want to enjoy it but sometimes it just hurts too much. So that sucks.

We're still adjusting. I've been sick for three years, on and off, but I only got the diagnosis a few months ago after a lot of tests and pushing for answers. Now I'm filing for disability, getting a shiny placard for my car, and redefining who I am when I can't do any of the things I've been trained to do or enjoy the hobbies I've enjoyed for years. My constant is my family. Everything else might change, but I have my husband and children and I'm very thankful for that.
post #32 of 46
Welcome, earthmama369! I used to be very active, too, then I got diagnosed with lupus. It has been a major change in my life, but my family is very important, too. My husband and I divorced this year, but we're friendly and he still comes to see me quite often. If it weren't for our grandchildren and the trauma we've been going through with DCFS, he may have never left.

My grandson has had to get used to a granny who can't do everything she used to do, and he also helps out, even though he is only 4 years old.

I'm considering bringing home my 2nd grandson who went to stay with a foster family when I got really sick in late February and if he can come back home I'll be so happy to have him with me again. My illness was so severe and he was only 7 months at the time. I have a better support system now, and just waiting for the caseworker and her supervisor to decide.

I've got that shiny placard, too. I used to hate the idea and actually didn't get one right away, that stubborn independence took a while to overcome. Eventually I came to realize that parking a little closer to the store wouldn't be such a bad idea, considering that I need a hip replacement!

Keep us updated and we'll be glad to listen and be here for you!
post #33 of 46
Hi!
I've been reading everyone's posts and think I just might fit in here. I've had rheumatoid arthritis most of my life. I wasn't diagnosed until I was 12 but probably had it since I was an infant. At 12 I was put on all the "normal" mainstream type drugs and I lived my life with good days and bad days, with flare-ups and set backs and with many drug side effects. It wasn't until I met my wonderful husband that I began to seek out natural medicine with his full support. Unfortunately I didn't switch over to all-natural therapies until after DD was born. However, the 19+ years of steriods, anti-cancer drugs, anti-malaria drugs, NSAIDS, and IV arthritis drugs took a major toll on my body and immune system. I am left with asthma, severe environmental and food allergies as well as nasal polys which cause chronic sinusitis, bronchitis and pneumonia. As well as a gamut of other immune related disfunctions. Thankfully, I am able to control most of those problems with supplements and other natural therapies but they still continue to be a struggle.

My DD is the light of my life. She is a very happy girl that is so full of curiosity and imagination. She loves music and dance which makes me so happy to watch since I can do neither.

I do feel like she has to "grow up too fast" in a lot of situations which makes me sad. Such as not being able to hold her or pick her up when she falls. I of course comfort her and invite her to sit with me but I can't physically pick her up. She also helps do chores and fetches things for me so that I don't have to walk accross the house "again".

As a few of you stated I fought the idea of being on disability but after two years finally succumbed. I still don't have a placard though.

I'm happy to read your inspiring stories of perserverance which help me keep going as well.
post #34 of 46
After following this thread for a bit I think it might sit better in Health and Healing. Let me know if you have any questions.
post #35 of 46
I have crohns disease. I am in remission right now, but last year I had a pretty severe flare. I was so inflammed they had to use a pediatric camera to do my scope and I was pretty close to needing surgery. In fact if the remicade hadnt worked I would probably have a colostomy bag right now.

When in pain, i have way less patience, and I sound mad, but I am not, I am just talking through the pain. DD went through a bit. So did my husband since he had not exprienced what my disease was like yet. I was in remission when we met and stayed in remission for a few years. Because it had been so long since I flared, I went through the seven stages of grief and the denial stage was the longest.

I think DD is very happy to have her mommy back, but at the same time I think she is stronger for having a sick mommy. I think our marriage is stronger too. My DH had to face some demons, wondering what exactly he had just signed up for. I do feel quilty sometimes even though being sick is not my fault.
post #36 of 46
hi all

I figure I'll jump in here, too. I was diagnosed with lupus in Oct. 2007 (about a year after giving birth to my wonderful son ). The first year, I was able to cling to my denial, but then the next 2 years I was pretty sick - pain, head-to-toe rashes, fatigue, lots of other random symptoms.

As if the lupus wasn't enough to totally crazy up my life, this past summer they determined I had a brain tumor in my front left lobe (you can't make this stuff up!). The doctor's determined that I should have it taken out, and they said it wouldn't really change anything, but it was safer to remove it. But lo and behold, there were actually huge changes upon removal - many of the symptoms we'd been attributing to the lupus went away

So, I'm currently trying to figure out how to live my life again, now that I'm not glued to the couch all day. It's been quite the roller coaster, but I'm thankful to be feeling better, and just hope I stay this way.

The "unknowing" makes planning life awfully tricky. If I get a job, what happens if the lupus flares up again? And will it be too stressful? Very hard decisions, but at least I have choices now (if I could even get a job in this economy, I'm a librarian, not a lot of jobs out there right now).

glad to have found this thread, hope everyone is hanging in there!

--kristin
mom to Simon, age 4
post #37 of 46
Hiya everyone!

I have MS (diagnosed in Nov. 09). Onset was probably 3-4 years before that. I have cognitive problems that have pretty much killed my ability to work at the level I once did (as a successful freelance writer/editor). Plus fatigue, severe heat intolerance (big issue as we live in a subtropical zone), balance problems, bladder problems galore and neuropathic itch. I sometimes need a cane and *always* ride the motorized cart at the store since a store trip will completely wipe out my energy for the rest of the day if I walk. I also have pretty bad swallowing problems and esophageal spasms. I use a relay line for phone calls because my speech is often slurred. Oh, and I have 20/6,000 vision in my left eye following a bad case of optic neuritis, so I have to wear an eyepatch -- seeing with one eye beats the heck out of not being able to see with both eyes open. So I'm a pirate mama!

I have a 6 y/o and am 23 weeks pregnant. Being pregnant is great -- most of my symptoms are in remission. OTOH, I can't take most of the meds I normally take, so fatigue in particular is a big issue.

People think I'm weird when I say this, but the diagnosis didn't really bother me much at all and it never really occurred to me as something that would create problems with having kids. No doubt this is because both of my parents are disabled (dad is elderly and has severe spinal arthritis, mom has CP).

--K
post #38 of 46
Welcome, Kristin and K!

Kristin: Wow, you've been through so much! I am glad you are feeling better now. I have the same feelings about going back to work, and so does DH as we both think it might make me feel worse...

K: You have a great attitude! I wish you a H & H PG!

AFM: I am glad I saw this thread in this folder as I couldn't find it for a few days! I hope all is well with you. I'm glad we have this thread as thinking about motherhood is so different for me as compared to healthy people!
post #39 of 46
Quote:
Originally Posted by Silverbird View Post
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
Hi Silverbird,

Well, my husband is legally blind (pending disability), and I have chronic pain that's so bad I can't get out of bed some days. I'm losing more mobility and range of motion each passing year (and I'm still really young!) Plus, I'm hard of hearing.

I had DS in 2006 when I was 16 and the pain was so bad most days all I could do was sit on the couch or lay in bed. Sadly, he ended up on the couch with me most of the day or in an exersaucer. He ended up being a late sitting, standing, and walking. But we were also in a difficult situation then (abusive household) so it's possible those were related to that and not my lack of physical activities with him.

I had DD in 2009 when I was 21 and the pain is not as often (some days I barely notice it) but when it is bad it's a whole lot worse. Different living situation and now I've just baby-proofed my whole living room and closed it off from other rooms so she can't hurt herself. That way if I am stuck laying down, she still can get down, crawl around and play with toys. She is 11 months and crawling, standing just fine, not walking yet though.

DS is 4 now and he would much rather read a book or play with blocks than go run around (although he does enjoy running at the park once a week or so, but he understands that Mommy can't usually run after him).

DD on the other hand, I worry about how my issues willeffect her since she is a much more active child. Guess we'll just have to see though.
post #40 of 46
Thread Starter 

wave.gif Hello all,

 

I was hoping we could get this thread going again if people want.

 

I've been off MDC for a while because dh was in hopsital and I was mad busy.  Lucky he's out now.  His tumor grew again ans he's now completly paralized chest down.  He's had some good rehab but is still figuring things out.  Since coming of of hospital he's constantly had the flu so hard to see where he's at.

 

Anyway our big news is that we've finally started on the road to fetility treatment with an appoimnet on tue and then in two weeks time.  Unforutnaly if we're succesful it's a 18 month wait for NHS treatment and I don't know if we'll want to wait that long.

 

Any way I'd love to hear who you all are.

 

Silverbird

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