Random Ramblings

Apologies for the radio silence. Things have been a bit hectic and it took a while to get my thoughts in order. I thought it might be an idea to get a little bit of the backstory written today. The problem being once I started I couldn’t really stop. So for the random ramblings of the day:

I have a severely dysfunctional immune system; genetically programmed to malfunction. In the past six years it cost me my sight for two years, robbed me of the ability to walk for nearly a year and has landed me in hospital and in the ICU more times than anyone should have to live through in an entire lifetime. My father also had a severely dysfunctional immune system. It cost him his life. He got ill shortly after my second birthday and was gone less than a month after I turned seven. He fought his illness for five years. I have been doing the same for the last six.

Having a genetically based illness is a weird thing. I know there is absolutely nothing I could have done differently at any point in my life to keep myself from getting ill.  My medical fate was sealed at conception. It was never a matter of if, but when.

My poor mum still agonizes thinking of the year I got ill. What if I hadn’t rented that flat with no heating? What if she’d taught me how to budget better and I ate better quality foods that year? What if I my stress levels that year were lower? What if… What if…

There are no answers to any of those questions. Doctors have told us time and time again that my immune system cannot function in a healthy fashion; the information that would normally allow it to is just not in my genes. In fact medical professionals have difficulty believing I was healthy for as long as I was. I, on the other hand, am simply grateful that I got to experience twenty years of health and strength whatever the reason may have been.

A few years ago, in an attempt to stop the progression of my disorder and halt organ destruction I began monthly treatments with intravenous chemotherapeutic agents. I had a long cycle of chemo at very high doses. It failed to do anything for my health, other than perhaps make me weaker, but it wreaked havoc on my fertility. My life was at stake at the time so no one was really counting ovaries and doing FSH measurements, but I noticed subtle differences from then on. My periods became irregular, some months they were just absent. The hormonal acne I had hated until that moment and that appeared every month was suddenly gone. I knew my fertility had been affected to a degree; in fact I had been warned it would be before I started treatment. I refused to get fertility tests at the time.Denial is a powerful thing.

Last year, my period became more irregular than ever. My health was more stable, so I went to a gynecologist to try and figure out what was going on. My FSH was high, my ovarian reserve low and whatever ovaries I did have were polycystic. I was in early menopause. I expected the results, but they were surprisingly painful. I could have children, the specialist said. Only I’d need to take medications for ovarian induction, medications I couldn’t take because of my immune system, and then use a surrogate. I thought about it some then thought about it some more. And then I picked up a foster parent application. Fertility treatments, as life altering as they may be for some people, were just not for me.

In the middle of all this I had been having an on and off fling with a man. We were always very careful and pregnancy, children and any sort of a future were not part of the equation for us. That is, until my period was a couple of weeks late, my appetite turned voracious and I was nauseous all day without my usual immune mediated hemolysis! I don’t think I’ll ever know exactly why, I was absolutely sure by that point I could never have children of my own, but I got a pregnancy test. It was positive.

I immediately called the fertility specialist I’d seen earlier in the year. He paused when I told him about the test and then started asking questions to confirm he remembered my medical history right. Yes I did have polycystic ovaries. Yes I’d had chemo. Yes I wasn’t ovulating. Yes my FSH and ovarian reserve were not good. He paused again and exclaimed: “Congratulations!!”

Due to the severity of my condition and its predominantly genetic nature, I’ve had to grapple with a myriad of practical and ethical issues these past few months.  I am to my very core, anti-abortion. Please don’t get me wrong. I don’t mean to imply that I judge anyone who exercises their legal choice to terminate a pregnancy or that I think doing so is somehow inherently wrong or unethical. It’s just not a choice I’ve ever been comfortable with, for myself.

Yet after my first appointment with an army of medical specialists meant to help the baby and me get through this in the best possible shape, I found myself in a deep state of despair. My anticonvulsants put the baby at higher risk for neural tube defects like spina bifida or anencephaly. My immune system puts her at risk for heart block in utero, which means she could need a pacemaker shortly after birth. My genes also mean there is a 15-20% chance of her having a similarly defective immune system. My propensity for clots translates to a higher risk of premature birth, of preeclampsia, of HELLP syndrome, of a low birth weight and intrauterine demise due to placental clotting.

I’ve spent the past few months actively trying to absorb this information and to come to a decision that would be right for me and for this child. Making decisions has always been my forte, but this time I was stumped. As much as I hate to admit it, my mother was right! Making a decision for someone else’s life is nearly impossible. I only had my ethical compass as a guide and I’ll be the first to admit that is deeply flawed and subjective at best.

Could I handle having a baby that was ill? I’m sure I could. Could I handle having a child that was ill because of me? I’d like to think I’m in a better position than most since I have an intrinsic understanding of trying to live a normal life and being ill. What about the very real possibility of something happening to me in childbirth or shortly after? I had serious conversations with the baby’s father and with my mother. We agreed my mother would look after the baby full time if I were gone. If something happens to her as well two people who have been close family friends for years, are more than willing and capable to raise the baby. See, I can be very logical and prepare for all eventualities on a practical level.

Throughout all this one question haunted me. What if the baby has the same immune defects I have, that my father had? What if she has a similar disease? What if I don’t die, but live to watch my child suffer from a disorder like mine, a disease I wouldn’t wish on my worst enemy?

Emotionally I’m still trying to find an answer to that question that can offer some sort of relief and comfort. In my darkest hours, I have at times wished I were dead. I have yearned for the emotional and physical pain to stop, for the physical deterioration to go away. I have cried for my lost health, for the life I had imagined and that will never be. I have lived through the depths of despair and come out the other side and though I would hate for any loved one of mine to have to go through the same ordeal, I have come to the conclusion that I do not believe the possibility of despair and suffering and death and pain are reasons not to live. Or to put it slightly differently, in all the times I wished I were dead I have never once wished I had never been born.

I can definitely understand how someone, when faced with the gruesome reality of living with a child with an incurable disease could seriously consider the possibility and decide not to go down that route. People have a right to whatever decision they believe to be correct for them and their family.  As for me, I am most thankful that when my mother was pregnant she had no way of knowing I would be ill. I truly do not know what choice she would have made had she known. I think she doesn’t know either. By the time my mum found out, she wasn’t living with the idea of a child with severe immune issues and antiphospholipid syndrome. She was living with her daughter, Zoe, who happened to have severe immune issues and antiphospholipid syndrome and that is a very different thing indeed.

These past few months I refused to prepare for the baby. I kept telling myself it was too early, she was too young, too fragile. I have seen first hand how fragile life can be these past few years. Regardless I found myself clinging to the notion that the baby would stop being so fragile when we got to x number of months. I eventually came to my senses. We are all fragile, every single day of our lives… A few days ago I bought stencil letters for the nursery. I spent hours putting them up and clearing the space. I also got a very tiny onesie and hid it in my closet amongst my clothes.

My family members believe one shouldn’t prepare for a baby’s arrival, in case something goes wrong. They think coming home from the hospital to a complete nursery without a baby can only add to the pain of one’s loss. I don’t know if my baby or me will be ok in the next few days or months. The only thing I know is that we are both ok today. And that is huge! This morning as I was picking out the day’s clothes, I glimpsed at that onesie and a goofy smile stayed on my face for hours. Like everyone else, I can only hope about tomorrow, but a good today is incredible in and of itself.

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About icedcoffeecreature

Hi there! I’m Zoe; a (mostly!) green foodie, soon-to-be mother of one and the proud “owner” of a slightly wonky immune system! If you happen upon my page, please say hello!

11 responses to “Random Ramblings”

  1. Ιωάννα says :

    This is possibly the most amazing story I have ever read. I can’t begin to imagine your strength and courage, and I honestly think you should write a book about it! Thank you, Zoe, for the inspiration…

  2. llallred says :

    I’m so grateful I thought to check in on your blog tonight. I am humbled at your strength and courage. You are a fighter and I believe your daughter is one as well. I’m glad you bought that little onsie – even if only because it gave you a smile (goofy or not) 🙂 Thank you for finding me through my blog which allowed me to find you. I am fighting back the tears right now because of how inspired I am by you. Thank you for giving me reasons to gather my courage to deal with another day. I will be praying for you and your little one and hoping that everything goes as well as possible.

  3. pregnancyandmore says :

    Hi Zoe,

    I have been thinking that you could write a book about your medical condition and your pregnancy! I gather that you’re into your third trimester now, so things are looking good for your baby girl. I think you can inspire so many people, as you have inspired us blogging moms 🙂

    Once again, thank you for a touching article, and for the courage that you instill in me.

  4. icedcoffeecreature says :

    Ioanna hi and thank you so much for reading, for saying hi and for your really kind words! 🙂

    Lisa Lyn: Thank you, truly. She is a fighter indeed, the little one! I’m torn between feeling thankful that she is and sad that she has to be at this tender age… A time for conflicted emotions….! Thank you so much for adding my little one and I to your prayers. Somehow I think a prayer or two can make a huge difference, whether on a practical level or a different one… I hope this finds you well 🙂

    Hi and thanks for the very kind words! I’m not in the third trimester yet, but every day that passes is a good thing both for the little one and myself! I hope your little one is doing well! 🙂

  5. Mel B. H. says :

    Wishing you many, many good days ahead. Please do enjoy and treasure your pregnancy. There is risk everywhere, for everyone. It is very hard to live life – especially through pregnancy – when planning for disaster.

  6. icedcoffeecreature says :

    You are absolutely right…! It can be hard to try to live life when planning for disaster; though sometimes it is not only inevitable, but necessary. A bit of a tricky balance! Thank you for the kind words and wishes!! 🙂

  7. mmmarzipan says :

    Your story is incredible- thank you for sharing it! I am 24.5 weeks pregnant and the doctor’s have deemed it a “high risk pregnancy” (for details, see my latest post- http://missmarzipan.com/ or drop me a line and I’ll share it with you). I am so sorry for the struggles you’ve faced and can understand your onesie story. I have only bought 1 thing for my baby… and it took others encouraging me for me to do it. I wish you a very happy remainder of the pregnancy… and good health moving forward afterward!

  8. Ιωάννα says :

    Ζωή έλα από το μπλογκ μου να “παραλάβεις” το βραβείο σου! http://engamovios.wordpress.com/2012/10/24/versatile-blogger-award/

    • icedcoffeecreature says :

      Ιωάννα τώρα το είδα αυτό που έγραψες και το βραβείο! Ευχαριστώ πάρα μα πάρα πολύ και για το βραβείο αλλά κυρίως για αυτά που έχεις γράψει…. Με συγκίνησες πολύ ομολογώ…. Θα είχα μπει νωρίτερα αλλά έχουμε εδώ κάτι κωμικοτραγικές περιπέτειες με το σκυλάκι μας το οποίο πέρισυ, στα πέντε του χρόνια, αποφάσισε ότι είναι διαβητικό!! Μας χτυπάει κάτι υπογλυκαιμίες τελευταία και τρέχουμε και δε φτάνουμε… Τουλάχιστον η ζωή δεν είναι βαρετή που λένε! Εσύ πώς είσαι;! Ο μπέμπης;! Ελπίζω να είστε όλοι καλά!

      Ζωή

  9. saifsmom2012 says :

    I don’t know what to say after viewing this blog. I think you sound like an amazingly strong person. Kind hearted and full of promise despite being realistic and facing the limits put upon you by your immune system and other diagnosis. I think having a strong will takes you a long way. I pray everything works out for you and the baby, I hope this is your miracle baby.

  10. icedcoffeecreature says :

    Thank you for reading this post, for commenting and for your very kind words…. There are days I’m not sure whether having a strong will is a good thing or a flaw, it feels like a little of both at times… 🙂

    I was reading a TS Elliot poem last week. I don’t know if you’re an Elliot fan, but I couldn’t help but be reminded of you both when reading these lines:

    “I said to my soul be still, and wait without hope; for hope would be hope of the wrong thing; wait without love, for love would be love of the wrong thing; there is yet fath. But the faith, and the love, and the hope are all in the waiting. Wait without thought, for you are not ready for thought: so the darkness shall be the light, and the stillness the dancing”

    Your quiet determination, strength and unbelievable courage and love for life and for your little one are true lessons for us all…

    Zoe

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