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