Introduction - It's Long :-)

Gail - posted on 11/16/2008 ( 12 moms have responded )

64

63

10

Hi, my name is Gail and it took me until the middle of my pregnancy to even admit that I am, in fact disabled.

I was born by emergency c-section in 1975. Everything was fine until at age 2 my mom who had been a baby nurse for 20 years saw the difficulty I had pulling myself into a standing position. She commented on it to my father who adamantly declared that she was never to say anything negative about the baby again. When she brought me to the pediatrician he said she was just overprotective. By around 3 1/2 after misdiagnosing me with polio and muscular dystrophy it was decided that I had a very mild form of cerebral palsy.

As far back as I can remember it's been braces, hospitals, physical therapy, wheelchairs, pain and being poked, prodded and photographed. It isn't just the CP though. I remember being about 6 and lying on a table and the doctors asking me to please pay attention. I was utterly confused because I was paying attention. They said they had been scratching my right leg for response but I didn't feel anything. They didn't believe me as that is not symptomatic of CP. There's also the overheating. I sweat completely symmetrically - and a lot. My right side gets completely soaked and my left is dry as a bone. I get extremely dizzy and faint if I have to be out too long when it's warm (and warm for me is over 65 degrees.) And then there's the breathing. That started when I was about 17. I had my third CP-related surgery then and after a summer in a wheelchair I couldn't breathe when doing anything physical anymore which I just chalked up to a summer of inactivity. I am a very energetic person and come from NYC so have no time for slowpokes :-) and would run for the bus and faint. This also is not symptomatic of CP. I did the cardio and pulmonary tests and everything was fine. The minute I mentioned that I also suffer from depression all my opinions were ignored. That was all around 1995. Since then I decided to just suck it up.

A few years ago my partner and I decided to get pregnant. I figured that since nothing is wrong with me gynecologically then it would be OK. I was mistaken. The doctor said my abdominal muscles were way too weak to support normal childbirth and I would probably die during delivery due to my (still yet unexplained) inability to breathe so we decided on a c-section which was fine by me.

The first trimester had it's usual misery and I was hospitalized with Hyperemesis gravidarum (vomiting about 10 times a day.) However, the worst part was that I had slipped into severe peri-natal depression. But I'll leave that for another board and try to focus on the physical. By my 5th month I could barely walk and my back was in excruciating pain. I had a cane which helped immensely but this was all far from normal. My partner and I shared some humorous moments in the last week of my pregnancy when I would take two or three steps, then rest for 10 mins and then take another two or three. The other day I saw a little old lady with two crutches and she was walking sooooo slowly and I asked him if I was slower, as fast as or faster than she. He said it was about the same. Not making fun of the lady - just trying to put some sun into what was a dark and dreadful time.

I warned my (amazing!) gyno that I had woken up during 3 of my 4 surgeries so she arranged a large crew in the operating room to monitor me from anesthesia to neurology, etc. My son Atreyu was delivered perfectly and is super! It was right when I woke up that the problems started. I was informed that due to my high tolerance of meds they had to give me extra anesthesia so were unable to offer pain relief from the surgery and I would have to wait a few hours. I waited and then came the morphine. It didn't work. It was like water. She doubled the dose til I was at the maximum but again it was like water. They tried different opiates, tranquilizers, sleeping pills but nothing worked. For two weeks I didn't sleep a wink but just sat and shrieked. It honestly felt like I was being eviscerated. I compared it to William Wallace at the end of "Braveheart." As I reread this it sounds really melodramatic but I can only say that that is exactly how it was.

After the two weeks it went from insane, crazy, "I'm gonna kill myself pain" to "Please God just take me" pain which is a little better. I couldn't hold Atreyu for 5 months. I made an effort to try to hold him for 10 mins each day and sat by his crib so he'd know I was there but anything else triggered indescribable pain. The doctors told me they were afraid that it might be permanent and that I would require home health care for the rest of my life. It was such a bad time and I so wish I had a board like this to vent on. When he was a baby I tried and tried to find resources for disabled mothers and I could only find help for specific problems.

Anyway, my body shouldn't have deteriorated so severely with CP. As I got older and started doing my own research I saw that CP did not accurately reflect the things that I found were going on with my body. Only recently have I been re-diagnosed. Turns out it's not CP although it looks a lot like it. It's actually a spinal cord abnormality combined with other autonomous neuro conditions. The gist of it is that the spinal cord is porous and the main hole is 12mm in diameter. This is the hole through which neurons travel which carry messages from the heart to the brain that oxygen has been pumped. My hole is 9mm so the messages are received late. In the interim my heart thinks the work hasn't been done and does more to compensate leaving me exhausted and breathless. It also explains why I don't respond to medicine (that goes for alcohol as well - I can drink anybody under the table.) The hospital said that they can treat my minor pain but if I were to have a serious accident or get burned they wouldn't know how to treat it so they're sending me off to get studied at a chronic pain management facility. I wonder what they'll do there. Hurt me until they figure out what stops it? Ugh, maybe that's why I haven't made the appt there yet. Anyway, there is no evidence on the MRI of any trauma (which was what we had always believed) and it is currently thought that it is a result of a virus I had in my first year of life. Unfortunately my mother doesn't remember so we'll probably never know what happened. It doesn't explain the Brown-Sequard Syndrome which is why I don't feel on my right side. And we're still hazy on the distnctly different size and shape of my legs and feet.

Now you know the background (hope it wasn't too boring) but here's how it's been since. I was pretty pleased with myself for coming up with ways to take care of him when I was alone. Since I couldn't carry him I would have my partner set up chairs close to each other all over the house. When it was time to change or feed him I'd wrap him in a blanket and pick up the ends and drag him from one chair to another. It made chaging time and feeding time a lot longer but it worked. I just feel like a completely useless component of my family. Atreyu is 2 now and I have given him 1 bath since he was born. When he was little I couldn't hold him and as he grew if he thrashed I couldn't breathe and didn't trust myself to keep him safe in water. I have taken him out by myself maybe 5 times. Again with the couldn't hold him. Then I thought it would be good when he was in a stroller but I couldn't breathe when pushing that either. Now it's much better as he's walking on his own but I'm terrified of going out with him because he's starting the rebellious stage and if he runs away I can't chase him. Changing diapers is hard because it's up on the changing table, getting him to stop grabbing everything, cleaning hm, holding him, down, redressing him and I can't breathe. Feeding is fine but cleanup is hard because I have to bend down and I can't breathe. Luckily we have a dog who cleans the floor :-)

What I can do is work. I can take my time and go to work (which I love) and do it all at a snail's pace. It took me years of fainting to finally get to the point where I made myself slow down. I moved to a slower-paced city and do the best I can. But that's it. I work and my income supports the family. When I'm home I am terrified that Atreyu views me as "that lady on the couch." I have tried to be clear and honest with him from the beginning. If he's on the other side of the room I tell him, "Mama can't get over there because she can't breathe. Bring the toys over here and we can play together." When he was 1 he just blinked but now he knows and it's OK. He knows that he can climb on me and I'll read to him. But essentially he's 100% his papa's boy. I feel that if I left he would never even notice I was gone. He rarely comes to me for anything and when he does I'm totally suprised. Only recently has he started to comment when I enter or exit a room. It lights my heart to finally be recognized by my child but it hurts more than I can describe that it's taken this long. Then comes the guilt of being angry at it having taken so long after all that I went through. I'm not angry at him but I am certainly nowhere even remotely close to enjoying being a mom.

This sense of uselessness permeates me every day. I spend countless hours crying. I know intellectually that I'm still his mama and that my presence is important to him but in reality I'm the stereotypical dad. I work and when I'm home I do a tad here and there with the kid. That is never ever what we had planned when we planned our family. We wanted 3 kids. I have been warned not to even consider a second so if you want to hear about how to combine 5 methods of birth control just ask me!

So that's my story - thanks for reading. I'm extremely interested in hearing about how other women are managing and how their partners are in terms of support. Mine is a Godsend without a doubt. I'm really looking forward to learning more about you and your lives.

Warmest regards,
Gail :-)

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

12 Comments

View replies by

Lisa - posted on 12/17/2008

18

11

4

Hi Gail! I do have pretty good upper body strength however as my kids get older yes it has put a strain on my back....So they are in daycare due to my back problems and the doc wants to make sure that it is okay so I am going to get an MRI done and things of that nature. However, I don't think it was just the lifting and things like that I also think it was because of the two pregnanices I had put so much weight on myself. It is so hard to excercise and I try to do some sort of exercise each day. It is difficult but I am trying so yeah over the years it has put a strain in my back with the lifting and whatnot. My house if proofed to some extent. I live in an apartment so that helps that they can't run away that far from me. LOL But I do discipline which would be putting them in a "time out". Either in their room if you can't lift them which happened to me or a chair and have them face the wall. It is somewhat difficult but I gave up the fact that just saying 'NO" is not going to cut it cause you can keep saying no and it won't get through to them. Which I found that out later on...I hope this helps. Let me know if you have any other questions. I have an email address too if you would like that as well. It's lisamarien1981@yahoo.com



Hope you and your family have a wondeful Christmas!!



Lisa

Gail - posted on 11/26/2008

64

63

10

Lisa (not just Lisa) - I wanted to ask you - your upper body strength has enabled you to lift your children and take care of them in that respect but how did you handle (or continue to handle) things like when they disobey and run off or climb somewhere you can't get them? Is your house proofed against those situations? If so, how? Or do they understand by your tone that some things are simply NOT OK? And if so how did you manage that? I've tried making it very clear to Atreyu with my voice when he is in danger and I can't get to him in time but he still just laughs. I get really worried that my physical limitations will cause him to get injured somehow.

Many thanks,
Gail :-)

Lisa - posted on 11/17/2008

18

11

4

I am a fast reader gail. LOL It isn't easy managing the kids with spina bifida but I am blessed you could say. I have great upper body strength so I am able to lift them. My disability just prevents me from walking. They do go to daycare part of the week which is great so they can get out and socilialize with other kids. My son who is 4 goes to preschool now. So I am able to have some "me" time as well. So I can rest. I am thankful for what I am able to do.

Lesha - posted on 11/17/2008

83

41

5

H Gail, Thanks for joining the group. Thank you also for telling us your story.

Krissy - posted on 11/17/2008

5

26

0

Hi gail! Thanks for the post!!

My name is krissy and I have a 4 year old named Lily. I have had two strokes, one at 14 and one while I was 38 weeks pregnant. I have lost all use and feeling in my right side. It sucks, but what doesn't kill you should only make you stronger. Sometimes things happen in life that you have no control over. You just have to pick up and learn new ways to live your life. I give thanks to my awesome husband, daughter, family and friends. I def. love them for their support. Don't let anyone tell you what you are capable of doing. I am sure you are a strong resilient woman. Talk to you soon =)

Karen - posted on 11/17/2008

13

0

3

Hi Gail, One other thing you brought to my memory with my son some years ago was the fact that without realizing it my husband and I put a lot of pressure on him to handle everything. I think my husband freaks when I seize and he put a lot on Mikey back then. With my daughter I have learned from years ago not to do the same. There were times when Mikey would be very depressed because mommy wasn't norm and stuff. So I have made sure that with Sarah it is different and her big brother has helped explain all this to her. Fortunately he and I have a very close relationship and we both understand that god is the one in control and He will always take care of me, so that mike understands this he don't feel responsible. It can be a heavy burden like a guilt thing for the kid. My kids are 9 years apart, thank God!!!

Gail - posted on 11/16/2008

64

63

10

Heh heh - thanks for saying he's adorable. I'm pretty pleased with myself in that respect. Excellent advice on showing him different types of disabilities. Our family is so over-PC (if you can be too PC) that if he was ever caught making fun of someone for being different he would be in deep...well, you know.

I think the flopping around on the floor was what my friend was thinking of. I feel she was trying to express a situation which is confusing and terrifying for a child where they don't know what to do but upon reaching a certain age can be taught and learn that although it may not be "normal" in every household it's normal in theirs and that their helping is a wonderful familial contribution.

When I can't breathe it's fairly obvious. But when the depression hits or something triggers me I kind of zone out. My boyfriend says I get a really creepy look on my face. When we met he had no idea how to handle it and would just yell at me to stop it or snap out of it. Now he knows that that is the opposite of what works. Before I agreed to have a child I told him that what I wanted was for him to promise to remove our child from any situation where I am depressed as I never wanted him to witness that. He completely disagreed and said that it was important that our child see it and have it explained to him that mama has an illness and illustrate some things he could do like give mama a hug or tell mama he loves her. Make it clear that it may not make everything 100% better but that he is helping mama to get better faster. So we've started that. The truth is that so far he doesn't seem in the least affected when I lose it so that's good I guess.

Thanks so much for your advice - it's extremely valuable!

Gail :-)

Karen - posted on 11/16/2008

13

0

3

Hi again Gail, not offensive at all. Hmm, not sure about that being correct though. I guess there are some seizures that are just where you are "out". Maybe that's what she means. I am use to the flopping around like a fish out of water. I do not mean to offend anyone. It's just an analogy of what many of my seizures look like. My little Sarah tells me that I start with a wierd noise and she knows that I will go into one then I fall to my knees sometimes I shake sometimes incontinent. Depending where I am depends on the level of injury. The last bad one was Oct. I did damage to my larnyx and my voice is still not normal. As your little one gets older maybe showing him different disabilities would help. Find a good dvd to share life with a disability. Get him use to seeing this stuff early and show him how he should respond. Whatever you do never raise him to make fun of any one for any reason. That is devastating. I have a husband who thinks it's funny to laugh at how people look. My 16 yr old son and 7 yr old have learned nothing good from this.

I agree that they learn from witnessing and when taught properly they can help in the situation. Future medical workers there. Michael wants to be a fire paramedic, today!

Your boy is adorable.

Gail - posted on 11/16/2008

64

63

10

Hi Karen! Thank you for your words. Crap - I forgot about other kids. I figured Atreyu would ask questions about why I limp but it hadn't registered that his friends might make fun of how I look in a bathing suit. Granted I'm never in them but...

I mentioned depression in my lengthy introduction. Aside from my physical limitations my struggle with depression is also physically devastating and that is what has been extremely hard for me to see him witness. He's pouring flour all over the floor or drawing on the wall and physically I could intervene but this time it's the depression and I just lie there. The guilt becomes overwhelming but one of my closest friends has likened it to epilepsy. I truly hope that's not offensive to you. My friend said that if a child grows up witnessing the seizures it's not that it's OK by any means but they get used to it, understand that it's a medical condition and learn how to handle it and possibly help. Any thoughts on that?

Karen - posted on 11/16/2008

13

0

3

Hi Gail and welcome to this board. It is wonderful to read everyone's story. I know that God will never give you more than what you can handle. Gail.....God bless you and keep you, obviously He has!!! For me the hardest part with my disability as a mother is knowing that your child sees you have seizures and has to get to ER or a neighbor and then he deals with the cruelty of other children making fun of his mother. It can be very hard to teach your child kindness when they see cruelty first hand. I have tried to teach all the latest about seizures and definetly try to get rid of any myths, there is. There is much ignorance even at school age and they are very cruel. The one thing I have found to make sure that he/she learns the truth is Love. They each need love and kindness. Especially when others are cruel and mean that's when you give the example of how to treat others. For me it is to stay positive even in the negative times. As far as the "disability" goes, it's just a part of life now. I have had seizures in many forms in many degrees. At worst, 17 a day- to now about 1 every 30 days. They are realizing that it goes around my menstrual cycle. My first was 14 and I have seen them change over the years and now I am starting perimenopause and see another change. I sometimes get an idea of about when one is coming,aura, but not often other than I know it's just days before or after cycle, when the hormones or going nutty. This is called catmenial epilepsy.

To the best of my ability we live life normal just like the other 7 yr. olds. I don't drive and that is the biggest disability with having seizures. My little Sarah is a sweety and shows so much love to me. It is very hard to watch a seizure, you think they are going to die. I can't imagine watching my mom seizing and then completely turn blue. All I know is that she is learning a great deal of strength through all this. My 16 yr old son was a real trooper, he saw seizures with results of stitches and many ambulances and rode in some- He took care of me when no one else could. I think he might go into paramendic field.

I believe this "disability" has done many good things for myself and people around me. Just as I believe the same with other "disabilities". All things work together for good, where is that from cause I believe it. Next time, Karen

Gail - posted on 11/16/2008

64

63

10

Thanks Lisa! Wow, that was fast :-) I was going to say "if it's not too personal may I ask..." but I guess this board is for us being open about our very personal struggles so: how have you managed two children under the age of 5 with Spina Bifida? How mobile are you? Have you had any of these same feelings I have?

Many thanks,
Gail :-)

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms