Tuesday, June 26, 2012

Pregnant Purging - Broken


     While I admit that this is a blog pertaining to my pregnancy, it is going to be very different from what I imagine most pregnancy blogs are expected to be. This should be about how hard it is to choose baby names that we both like, how difficult it is to find gender neutral baby clothes and accessories, or even just how different this pregnancy is from my first two that were respectively twelve and fourteen years ago.

But it's not.

     I'm only eleven weeks along and have just had my first batch of prenatal blood work. My doctor had me tested to see if I carry the Cystic Fibrosis gene along with the basic red blood cell count and check for STDs that I suppose are pretty standard. I'm not used to personally hearing from a doctor when it comes to lab results - - it's always been someone else, a nurse manager perhaps, that calls me back and reviews them - - so I was surprised when my doctor himself called me back to review my lab results.

     Turns out, I am a carrier for the Cystic Fibrosis gene. Now in order for your child to actually have this disease, both parents must be carriers of this dormant gene so our obvious next step would be to have my husband tested. Our insurance will not cover having him tested to see if he is a carrier, only to see if he does actually have Cystic Fibrosis and it will only do that if he is showing symptoms of the disease. My doctor wants us to go visit a geneticist to discuss my husband's family history.  It seems one in every thirty one people are carriers of this dormant gene.

     During the conversation the doctor continued to ask me if I had any questions as I became quieter and more withdrawn. I had tons of questions, but I didn't trust myself to speak. I didn't trust myself to do anything more than politely agree to everything that he said and thank him for his time.

     I got off the phone and tried my best to steel myself from the waves of emotions crashing inside of me so I could go tell my husband. My best was not good enough, I'm pregnant and by this point convinced that I am genetically broken. I'm an emotional roller coaster that is out of control and we've only just begun. I felt powerless and vulnerable, ripe to be kicked. If I wasn't going to allow myself to break down then my emotions had nowhere else to go but to the one feeling that I did understand.

Anger.

     I became angry. I understand anger. I know how to use it. I can wrap it around me like armor, fill myself up with it. Wield it like a sword and shield. It numbs any feelings of sadness or vulnerability. I can rip things apart, down to their foundation, leaving nothing left. I can breathe it down the neck of every living thing I come across. I know how to use this.

     Before I go any further perhaps I should explain what Cystic Fibrosis is and why I reacted in the manner that I did. Cystic Fibrosis is a disease, or a condition if you may, that clogs the lungs and leads to life threatening lung infections and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food (taken from cff.org). The sufferer's life is normally dotted with multiple bouts with pneumonia before being cut short, on average, in their mid thirties. The affected are normally required to eat a special diet. There are varying degrees of Cystic Fibrosis, and in some cases it may not make its self known until adulthood. There is no cure.

     But even if we are both carriers there is only a twenty five percent chance that our child will actually have Cystic Fibrosis. Those are pretty good odds, aren't they? Perhaps. But here's my take on it. What if we are that twenty five percent and low and behold the child is born with it. It's not a mild case. It's a nasty one, a bad one. The child is in and out of the hospital, sick all the time. Perhaps moving to a breathing machine of some sort way too young. It's on a special diet and takes an array of pills. It mourns the absence of a normal childhood while it listens to the kids in the neighborhood play and watches its older siblings come and go with their daily social lives. And I am to look this child in the eye and know that it exists in suffering because I wanted to give my husband a child of his own. Because we wanted a baby.

I'm being dramatic.

     Of course I am! Because this is an exaggerated scale of what I have already been through with my other two children. I can remember being eighteen years old, ignorant and scared, and receiving a call while at work from my obstetrician that my blood test showed that David could have Downs Syndrome. I sat in my boss' office and cried. David's father had had a step brother at one time who had Downs Syndrome so he was able to give me the strength to accept the possibilities of having a child like this. We agreed to have more sonograms done so they could compare measurements as part of further testing for the syndrome and then they came back to me and told the odds of David having Downs Syndrome and that the only way to know for certain would be by an amniocentesis. The odds of me miscarrying from the amniocentesis was higher than the chance my son would have Downs Syndrome. When, in all of my naivete I asked what we could do if we did get the amniocentesis and it came back positive, the doctor told me that my only option would be to have an abortion. We didn't actually know for certain what to expect until David came into the world early one March morning after I was induced due to Toxemia.

     He didn't have Downs Syndrome. In fact, other then being so jaundiced he looked like a summer squash, he was beautiful and healthy. Five years later he would be diagnosed with ADHD and PDD, and be considered by the school system as mildly Aspergers Autistic. He learned everything later then other kids, from speaking, to counting, to his alphabet to being potty trained. Until he was diagnosed I beat myself up over it, believing that I was just a terrible parent because I couldn't get him to learn. Since then he has seen neurologists, psychiatrists and therapists. He has almost been committed twice and admitted to the hospital once for voicing that he wanted to hurt or kill himself. He takes medication everyday to help him focus and not act out. He never gets sick. He has never had an X ray. He is obsessive. He is absolutely brilliant. He forgets that he's fourteen and not forty. Some days are easy, some days are not so easy.

     My second child had a much less eventful pregnancy. No blood pressure issues. My water broke all on its own one night and Journey was delivered by natural delivery. The delivery did not go as smooth as I had hoped since she was my second child. I'm ashamed to admit that I didn't handle it very well. I fainted between contractions, I cussed at my midwife. I went into shock when everything was said and done. I remember the doctors being concerned over something, but they were so far away. They tried to let me hold my new baby, but I couldn't keep my eyes open or stop shaking. Out of fear that I would drop her they whisked her away for the next nine hours to be poked and prodded by specialists.

     Journey was born with Torticollis, low muscle tone and what I believe they referred to as a “floating” upper palate. She couldn't move her head, it was stuck in one position. Her legs were hyper-extended at the knees. Her first pictures show her legs bent backwards. When she tried to eat her palate prevented her from being able to consistently swallow. Meanwhile, I drifted in and out of a fever induced sleep, waking up only long enough to demand that I see my baby and accusing the staff of not telling me that she was dead. Nine hours is a long time to be separated from your new born baby.

     Once my fever had been gone long enough to satisfy the doctor they brought me my little contorted bundle of joy. I tried to change her diaper by holding her little calves and lifting her bottom up and her legs kept bending until they were bent like a birds and I was left in my hospital room horrified at what I had done. Journey didn't seem to notice.

     The next year was spent with two visits a week to a physical, occupational and speech therapist. I quit my job and became a stay at home mom for ten of those months. I was told that she would never walk and I had to invest in a frightening car seat to accommodate the fact that months and months were passing, but she was still stuck in her lima bean shape with no way to hold herself up or sit up. She couldn't hold her own bottle. Her head refused to come out of its one position on its own. I was terrified that she would suffocate if I tried to put wedges or pillows to keep it straight. One side of her head became and still is flat. I hate myself everyday for it because I could not come up with a way to prevent it. I was prepared for this child to be wheel chair bound. The therapists insisted that she was right on level cognitively so she would only be physically handicapped. I attempted to count my blessings.

     Slowly, and about three months behind every milestone, she began to catch up. She rolled over, held her bottle (with the help of her feet), started scooting, rising up on her hands and knees, crawling, standing and finally, at fifteen months old, she took her first step. She was going to be able to walk and run and dance and ride a bike just like every other little girl should. While she would still take therapy off and on over the next several years, and at times parents of children with Cerebral Palsy would ask if she also had it due to the way she walked and held herself for years, she is capable of doing everything. Including standing up with her feet twisted and facing the opposite direction just to freak people out.

I'd like to note, before diving into this next part, that I breast fed this child. The first one wouldn't latch on and I wasn't able to produce enough and became discouraged early on. Journey and I had no issues. We read about all of the benefits of breast feeding and I'd like to point out that I did not breast feed David and he never gets sick. Journey began her accord with allergies by way of Eczema. Large, weeping wounds on her torso, legs and arms. People would accuse me of putting cigarettes out on her when I took her out in public. I used special clothing and body soap and shampoo with her. Her doctor tried so many different creams and methods but none of them worked. One morning I came into her bedroom to find that it had spread to her face and I became unglued. What if it got into her eyes, ears or mouth? We went straight to the emergency room and finally a doctor had the courage to prescribe something aggressive. I understand anything that has steroids in it is bad for a toddler but the other possibilities were even worse. She still has a few scars from it today.

     Over the next several years she would be diagnosed with asthma and allergies. She is allergic to the common dust, dander and pollen but also to nuts and coconut and an array of other obscure things according to a skin test that turned her into a pin cushion. She lived her life using her nebulizer and inhalers every so many hours a day. A hurricane came through and knocked out our power for a few days and we were terrified that we would need her nebulizer but not be able to use it. She wheezed and hacked, caught pneumonia and bronchitis and influenza a. Finally, at about nine years old, she went in for surgery to have her tonsils and adenoids removed. She had only gained three pounds in three years but she was getting taller and taller. Her adenoids and tonsils were always in an infected state and this is why she never seemed to get better. With her surgery completed, and all complications healed, she gained thirty pounds almost immediately and suddenly never seemed to be sick anymore and her asthma became manageable. She got picked on at school for her sudden weight gain as a lot of it went straight to her belly, but she took it in stride. Her allergist still insists that she take two pills, one inhaler and a nose spray a day, but she seems to be doing even better since we moved up north. She loves to ride her bike and perform in theater productions.

     After my first two children I decided that I shouldn't have another child. That I could not take what God would give me next. I decided that I was genetically broken and that my next child would be a mutant with lobster claws and the ability to levitate stuff with its mind. Does that sound harsh? It's suppose to. Because it's not aimed at the potential child, it's aimed at me and whatever FUBARed genetic cocktail of WTH I have in my DNA that I should not pass along to another living being. I felt like I should have been taken out and sterilized.  Even my completely natural breast milk did nothing to help my daughter's immune system, while my completely bottle fed son is practically immune to everything.

     But people kept pointing out that we didn't know whether or not it was me or their father. Now the asthma and allergies issue with Journey is definitely from my part of the gene pool. While I do not suffer from it, my mother and other family members did and still do. But the rest, well, maybe people were right. Maybe the rest wasn't me. I mean, isn't it feng shui to blame everything that ever went wrong on your ex-husband, logical or otherwise? And while I did have some fairly intelligent points to back up my feeble attempt at making myself feel better I am not going to disclose them here. They are no longer my business to publicly announce and they would only disrespect how much work my ex-husband has put into changing his life.

     So with the hope that maybe, just maybe, it wasn't all me, when my husband admitted that he wanted a child of his own I agreed. I stopped taking all of my medications except the one that regulates my GERD. I began taking prenatal vitamins. With in a month or so we were holding a positive pregnancy test in our hands. I was staggered by how quickly it happened. I added folic acid and DHA pills as well as calcium tablets to my daily dosage. I cut out all caffeinated beverages. This pregnancy and baby were going to be healthy.

     When my doctor originally approached me about being tested for Cystic Fibrosis I agreed. I didn't know anything about it and in some naive and infallible way I was convinced that I didn't have whatever it was anyway so the test was no big deal. I declined the Downs Syndrome testing, I already knew how that story played out and I was not about to go through it again. I wish I had done the same thing with the Cystic Fibrosis now as well.

     So anger was the only way I could react. Crying wouldn't change anything. Anger wouldn't either but at the very least anger did not make me feel weak or helpless. I tried to talk with my husband about the situation and tell him about it, but I was aggressive and abrasive. I wasn't gentle or considerate that this may scare him as well. I groused at any support or comfort he tried to offer me. When he asked me if he was able to get the test to see if he is a carrier would it make a difference my response was open ended and cold. After a bit he finally had his fill of my temper tantrum and let me know about it. I finally broke down and cried and probably made him feel like the biggest jerk in the world.

     I didn't cry or become angry because I felt that I could be robbed of a chance to have the perfect baby. I feel broken and worthless. I feel like there's something wrong with me and my children are suffering from it, whether it be a chemical imbalance or a muscular issue or what have you. My genetic code is scrambled, and I'm selfish for having a child that may suffer from something that I know that I carry. I know that the only way they can have it is if my husband is a carrier, but since insurance doesn't cover the cost of testing him and we aren't paying for it then I really have no way of knowing. At this point I don't want to have him tested. I don't want to know. Not because I'm scared to find out that he may be a carrier; I'm scared to have that confirmation that this really is all from me. That my amazing husband who picked me to marry, love, take care of and to have the child that he never thought he would ever have has chosen a wife with all the Molotov cocktail genetics reminiscent of a third generation lab rat.

(I'd like to close this by saying that I love my children dearly and knowing exactly how they came out in the end would not, in any way, have deterred me from having them. I'm hopeful that there will be no misunderstandings or hard feelings from anyone after reading this. I'm not looking for poor babies or other such sympathy, I'm just purging. This situation happened a week ago, I've calmed down quite a bit since then.)