The other day I went to an informal work meeting to discuss my rather unstable health and the difficulties that may creep up in the coming months. The meeting was with one of the gentlest people I’ve met, a woman called Liz.
About 15 minutes into this meeting and as we were talking about all sorts of scenarios, Liz asked me what I wanted. Not what I wanted to do or what I wanted to plan or what I wanted to happen, but what I wanted. It was an impossible question to answer. We looked at each other until she said “Why am I asking you that? What you want is not to be ill”. I had to bite my hand to maintain my composure.
And that’s the long and short of it. The ugly truth of the matter. What I want is not to be ill. Eight years in, after struggling for years to reach a place that resembles acceptance, what I want is to wake up one morning and discover it was all a dream. It is such a contradictory place to be in, as I fully believe that I would not be the person I am today were it not for my ill health, all I’ve had to go through because of it and the people I’ve met as a result. I love my life and am endlessly grateful for it. And yet when I wake up with a temperature from yet another infection or swollen beyond recognition from angioedema or with creaking, painful joints that constantly give out all I want is to close my eyes and wake up to a reality where I am healthy, my body is dependable and my most prominent physical complaint is having a cold.
I can analyse this to death. In fact I am trained to analyse it. I can talk about how illness brings us face to face with the reality of our permanence on this earth and of our physical limitations. I can tell you health can serve as an illusion of immortality for people and illness can bring us closer to what is important in life and can force us to grow as human beings. And It wouldn’t be a lie. What is also true is that once in a while I am overcome with longing for an existence and a physical self that will never be. That sometimes I want to be able to get lost in spontaneity and not live in a carefully calculated balancing act of small disasters. That some days it feels like I’m drowning in a sea of lost possibilities and fear that’s all my life will ever be. It may be self indulgent, but it’s emotionally honest. And there’s nothing wrong with that.
Last time I posted, in 2013, my newborn was having GI issues and we were looking for a treatment plan for her. Dot doesn’t seem to have inherited my immune dysfunctions, but she has inherited my propensity for the bizarre and rare.
After we got her GI issues under control, she started having multiple allergies, followed by malabsorption/wonky metabolism of her thyroid medication, followed by pneumonia, followed by a heart murmur, followed by double ear infections, followed by another pneumonia, followed by wheezing/breathing issues, followed by the beginning of gross motor delays…. It seemed like the minute we got her health under some form of tenuous control, another unrelated problem would crop up.
Fast forward an entire year:
We’ve now got a much better understanding of Dot’s sensitivities, of how her health issues interact with one another and of how to help her when she does get unwell. To get to this point we went through seemingly endless battles with her local paediatrician, who I ended up ‘firing’, and managed to get more specialised support for her. I found a paediatric lung specialist who carefully planned the right treatment for her. Many other doctors helped put plans in place for her as needed. Her paediatric endocrinology team is, as always, brilliant. I will be forever grateful to the consultant and specialist nurses who managed to both keep me sane when Dot stopped responding properly to her thyroid medication putting her brain development in danger and who, much more importantly, were able to figure out why this was happening to her and how to stop it. I will never forget getting calls from her NHS specialist at all hours of the day and night on weekdays and weekends so he could update me on Dot’s test results or ask how she was following a dose change.
Dot attended nursery full time, when circumstances allowed, from early on. However in the fall of 2013 we noticed that she wasn’t meeting some of her developmental milestones. After a lot thought I enrolled Dot in a forest school. It is a place staffed by people who have the knowledge to deal with her medical fragilities using a lot of common sense, while putting individualised steps in place to help her reach her maximum potential and include her in all age-appropriate activities. Dot spends the day outside when she is at nursery, surrounded by six acres of woodland, farm animals and lots of muddy puddles to jump in regardless of the weather. No small feat for a toddler with a wonky thermostat and a propensity for hypothermia! The long car journey, 6am wake-ups and daily exhaustion to get to and from there is offset by watching her stretch herself as a result and by how happy she is when she goes there for the day.
My own health isn’t in the best of states, but last year I managed to go back to university for an entirely new career, start work again, survive the year and move forward; all things I never thought possible. The situation is, of course, not that simple or clear-cut and the fact that I’ve survived the year on all fronts is more a testament of my medical team’s abilities and of my mother’s endless support and help than anything else. Let’s not forget that it is because of those two factors alone that I got to see my daughter be born and have had privilege to watch her grow into herself these past 21 months.
And…that’s it for now!
I realised recently that I haven’t updated this blog for more than a year. I could say life was too hectic and that wouldn’t be a lie, or that we faced too many crises to count which would also be accurate. The truth though, is that I needed time. Time to be silent and time to reframe my perspective and language.
So after a year away, this is a small ‘hello again’ and a first attempt to get back into some sort of writing/posting routine here!
A few weeks ago, I wrote about my daughter’s health issues and how we were anxiously waiting to see if the new, specialised, amino acid based infant formula the doctors put her on would work.
Dot seems to be more comfortable on Neocate. There have been fewer tears, less screaming and fewer sleepless nights for her. However, for all intents and purposes the formula has failed. Sure, some of her symptoms have improved. On good days we even get smiles and giggles! But her GI tract is still inflamed and it sometimes seems that the bad days are an endless loop of time we are permanently trapped in.
We have also reached the all too familiar “what *is* this?!” zone from medical professionals. The pediatric dieticians who were previously convinced this is a milk protein allergy are now saying they have no idea what is going on with my daughter, though they did kindly suggest I should feel free to take her to the emergency room at any time….
So…we need to start searching. We need to track down specialists, diagnose Dot and find the treatment that will offer her the best quality of life. Fortunately or unfortunately, this is the part I’m actually good at. Organising all things medical is one of my fortes!
We’ve been a bit secretive about Dot’s health with people. I didn’t want her existence to be defined by a set of symptoms or a diagnosis. I didn’t want people to look at her every time she cried and think “oh she must be in pain again, poor child”. Naïve? Perhaps. I had the best intentions though; that must count for something!
Ever so slowly we’ve been sharing the news with a few people. And ever so slowly, they have been distancing themselves. This tends to happen when I am particularly unwell too. Please don’t think me unkind, I don’t mean this badly, it’s just a fact of life. I think we tend to distance ourselves from the small tragedies of people’s lives.
One of the most common reactions people had to news of my pregnancy and Dot’s birth was to call both a miracle. Family and friends said time and time again that the news was so good that not only would my health stabilize, the birth would go ok but that the baby would be healthy too. I had unknowingly stepped on one of the reasons Hollywood movies are so successful; we all love cookie cutter endings! We yearn for them and irrationally try to convince ourselves things will turn out ok, because they somehow have to.
Life *is* miraculous. It is also painful beyond belief, astonishingly beautiful, filled with laughter and love and randomness. Dot’s birth is a miracle regardless of her health and of her life’s trajectory. Not because I was ill, seemingly infertile and got pregnant. No. Because Dot, in all her ten weeks is a small person who, like a million other small people on this earth, is fighting for her life and for the privilege that is our existence. Sometimes she seems to enjoy it. Other times she needs one of us slightly older people to pick her up and hug her and remind her that bad days don’t last forever. The sun will set and as long we are alive the possibility of better days ahead is there. And on all the days we are on this earth the possibility of laughter and joy and love surrounds us. What more can anyone ask for…?
It’s been more than a month since I last posted here. Life with a newborn is a little bit mad! It’s shocking to me that I ever believed I was busy before all this. A busy day takes on a new meaning when a newborn is involved. These past few weeks I’ve been more tired than ever and getting by on stolen hours of sleep here and there. This has resulted in my health taking a hit, and my condition going into what seems to be a controllable flare. Regardless I’ve loved every exhausting, frustrating minute of it. My daughter is incredible and, for the time being, I feel I could spend all day watching her and enjoying the beginning of our life together.
When the little one, who has been nicknamed Dot by friends and family, was a few days old we discovered her thyroid gland failed to form. She’s been on thyroid replacement therapy ever since and the results have been truly remarkable. While Dot has always been a settled baby, she was unusually sleepy for the first couple of weeks. Her tongue seemed too big for her mouth and was always sticking out, giving her 20ml of milk took hours, she had jaundice that refused to go away despite light therapy and in the hospital they’d mentioned her body temperature was unusually low. She was also oddly short when she was born, just below the 0.4% of the growth curve, despite having two very tall parents. We’ve since learned that lack of thyroid hormone affected her in utero and this was the reason behind her symptoms. I was a little upset when Dot was first diagnosed with congenital hypothyroidism. Upset that she had health issues already, upset that she would have to be on medication for the rest of her life, upset she had a condition that, untreated, could have devastating effects. In fact the results of treatment have been so dramatic that I now find myself preparing her meds every day with a smile on my face. Within a few days of starting thyroxine, her little tongue was in her mouth for the first time, her jaundice improved, her appetite grew and her body temperature stabilized Even her length jumped from the 0.4th percentile to the 25th within two weeks!
Of course, getting the medication dose right did involve almost twice weekly visits to the hospital for blood tests. We’ve had such frequent appointments with the pediatric endocrinologist by this point that I feel we should be on a first name basis…! Despite small bumps in the road, as the days passed I started feeling that in the spectrum of disorders one could have we were lucky; this one seemed to be one of the most easily manageable.
And then it began.
Last week my normally very settled, very content baby changed, seemingly overnight. She became irritable, seemed to be in pain during feeds and refused to sleep. After she ate, she moaned and her body went rigid and tense for hours. Her regular bowel movements turned to explosive diarrhea and she started being sick. A few days ago I found a frighteningly large amount of blood in her nappy.
We’ve spent the last week having back-to-back doctors’ appointments; desperately trying to prevent dehydration and figure out what the problem is. The doctors initially suspected gastroenteritis. When her symptoms failed to improve and the stool cultures came back negative for infection, they thought she might be lactose intolerant and she was placed on a lactose free milk. She got worse within a couple of days of starting this milk. Her pediatrician told us a few days ago he thinks it could be a case of intolerance or allergy to milk protein (versus lactose). He started her on a special hypoallergenic milk. She’s been on that formula for close to 72 hours and so far her GI symptoms have not improved. If 48 more hours pass and the bleeding does not stop we have to take her back to hospital.
When I first got ill, my mother would say that she’d rather be ill herself than watch me suffer. I regret to admit I failed to understand her at the time. I was always so sure that a parent’s first thought would be that they themselves try to remain healthy and strong so they can help their child through an illness. I now know what my mum said isn’t a logical thought; it is a primal emotion.
As I sit and watch Dot writhe and moan in pain for hours, I can’t help but think of a piece by Simon Barnes whose little boy faced many medical challenges from birth. It goes: “I wanted him to live with all my heart: Indeed if my heart would have been any good to him, I’d have given it and welcome. That doesn’t make me a saint, by the way. Just a parent”. I remember reading that piece a few years ago and failing to understand that sentence. It was an emotion so foreign to me I was sure it couldn’t be real, sure it was only a dramatization. Unfortunately I am now lucky enough to know it isn’t.
I would do anything, say anything, sacrifice anything and anyone, myself included, to stop my child’s pain. It isn’t logical or doable, and unfortunately Dot’s pain and health are entirely beyond my control and on a logical level I do realise it, but it is an overwhelming emotion that leaves me breathless and raw with its intensity. So it seems that I am now officially a parent….
Please keep your fingers crossed for my little girl this week.
I hope this finds everyone well!
After a week of artificial hormones, and a host of complications I am too shell shocked to talk about right now, the little one finally arrived!
Despite doctors’ predictions, my health has slowly started stabilising after the birth and the baby seems entirely unaffected by my health issues, both of which are absolutely brilliant news. She is the tiniest human I’ve ever laid eyes on and, of course, the cutest! We’ve both spent the past week actively trying to recover from the birth and getting back to back tests to make sure we’re both in the best possible shape.
On a slightly different note, a few days ago we found out that the little one has decided to follow in my unusual health footsteps as it were, when she tested positive for congenital hypothyroidism. This disorder is entirely unrelated to my health issues; it’s just….random! It’s not yet clear whether her thyroid gland failed to form in utero or whether the condition is a result of pituitary dysfunction or something else…. The only thing I can say with absolute certainty at this point is that we are unbelievably fortunate that congenital hypothyroidism is a treatable condition that can be managed with medications, regardless of the cause.
In any case, what is important is that we both survived, albeit a little worse for wear for a few days, and we’re both here in one piece!
So if I may, I’d like to take this opportunity to introduce the little one to the world:
Will write more, soon!
So…. we’ve now reached 38 weeks (and let me just say at this point that the fact that we’ve gotten this far is completely surreal in and of itself)! My health has slowly, but steadily, been declining these past two months. I’ve now got active lower and upper GI bleeding (that I’m helping in a homeopathic manner, since I have to inject high dose blood thinners too!) and daily attacks of angioedema among other issues. I don’t really mind my health declining, as long as what’s going on isn’t affecting the little one; I’m kind of used to used to the ups and downs of my body and have good energy reserves to deal with crises. However this past week my blood pressure started destabilising on top of everything else and is constantly jumping around from close to 70/38 up to 162/119.
This is a known issue for me during flares, but right now the high blood issue presents a very real risk to the placenta. To that end, after a series of growth scans, cardiotocography monitoring sessions and a whole day of absent fetal movements, which was easily one of the scariest days of my life, my doctors have decided to admit me to the hospital this evening and begin a careful and persistent induction process. We will be doing our very best to avoid an emergency c-section, as it’s important that I try and get through this in one piece and with the least amount of tissue damage possible so as not to provoke immune-related flares.
On a different note my community midwife, to whom I am forever grateful, got a series of vaccinations this past week so we can bring the little one home sooner versus later assuming everything goes relatively smoothly. In any case we’ll definitely not be leaving the hospital six to twenty four hours after the birth like other folk! As things are we’re expecting it will take anywhere from a few days to a few weeks to get me stabilised (and that’s the best case scenario!) and to get the little one thoroughly checked out and monitored before we can see the outside world!
We’re at a point where there’s simply no way to go but forward, so forward it is with trepidation, a positive mindset and faith in the safest and best possible result for all involved. On that note, could I please ask that anyone who can keep their fingers crossed this week for the little one and myself?
I hope this finds everyone well!
It’s been more than a month since my last post here… When things are going really well or really badly I have a bad habit of going very quiet and still and retreating into myself…. This past month has touched both ends of that spectrum.
In this crazy house of ours we have two dogs; a 13 year old Jack Russel mix and a six year old labrador. Last year the labrador “decided” that the problems we were going to face this year were not enough to keep our life interesting and adventurous. In an effort to add some spice to our humdrum lives, last October, he very kindly developed insulin dependent diabetes! He’s on a twice daily regimen of insulin and that, coupled with very careful blood sugar monitoring and the same amount of exercise and special food each day, has kept him relatively stable and happy this past year. In fact other than a UTI he has experienced no complications from the diabetes.
People tend to say that when it rains, it pours! Last month we noticed the dog was losing weight and was generally unwell. We took him to the vet. He had an ear infection. He got all sorts of meds for it and started feeling better. A couple of days later he went into hypoglycemic shock and collapsed in the kitchen. We brought him to by trying to get him to swallow about half a kilo of honey and rushed him to the vet, who lowered his insulin dose.
And just in case it wasn’t clear before let me add this small interlude to our story here! being 27 weeks pregnant, running around like mad to locate the honey, then sitting on the floor and trying to lift an unconscious labrador’s head to pour said honey in his mouth? Not a fun or recommended pastime!
With the lower insulin dose the dog’s blood sugar skyrocketed and he started being in danger of developing ketoacidosis (not a good or cheap complication to have). I think I spent about two weeks with no sleep, taking blood from the dog’s ear every 30 minutes and calling the vets every two hours 24/7 so we could get him out of immediate danger and onto something that would resemble stability and quality of life. The dog is doing ok now and after more antibiotics, insulin dose tweaking, a drastic food change, steroids and anti-inflammatories he’s back to his stable puppy-on-drugs persona!
*That* was the really good part of the month!! No, no I’m not entirely demented! It really was the really good part of the month!! See the little one and I may have been a little worse for wear with the dog mayhem, but we were both doing absolutely fine! I love my dogs don’t get me wrong, but I like it when the humans do well too…!
The second half of the month I’ve been quiet for hasn’t been quite as good…. The little one is nearing 31 weeks, which is by far more than I could have ever hoped to dream for. She was 1.5 kilos on the last ultrasound and the placenta seems to still have good blood flow with no clots or evidence of bleeding.
My health is a bit of a different story though… About two weeks ago I started having episodes of lower gastrointestinal bleeding. I went to the hospital and was evaluated by the obstetric team and gastroenterology. They put the little one on a monitor immediately and kept her under observation for hours to make sure the bleeding wasn’t putting her in distress. She was as bouncy as ever! My health issues, combined with the pregnancy, mean I need to be on a rather high dose of heparin, a blood thinning drug, to prevent placental clots and clots in my body. So taking that in mind, the doctors said there’s a couple of possibilities re the gastrointestinal bleeding: it may be a side-effect of the heparin itself or it could be that there’s immune related inflammation in the GI tract (which in turn could mean that the underlying disorder is starting to flare, but let’s not even go there). To figure out which of the two is going on right now they need to take a look with a camera, which of course they can’t do without me stopping the heparin for 3-4 days. What is a little problematic here is that If the heparin stops for more than 12 hours at this point the placenta or I could clot. Already a bit of a catch 22.
In the meantime last week, out of nowhere and while we were still trying to figure out how to solve the bleeding issues, I had a gush of clear liquid that soaked my trousers and scared the bejeesus out of my mother, an unfortunate friend who witnessed the event and myself! So again off to the hospital and onto the monitors we went…! The doctors aren’t absolutely sure, but they think the membranes may have ruptured and had a leak. Now, and this is the tricky part, if the membranes are breached at any point the amniotic fluid (and with it the baby itself) is at high risk of infection. As I understand it if they are absolutely sure there’s a leak and said leak continues, the plan is antibiotics and steroids for ten days followed by delivery. In my case it seems the leak healed, which apparently happens in 10% of cases. So the plan for now is vigilance for signs of infection and very frequent blood tests to check for any sneaky infections that may be trying to take hold.
In the middle of all this chaos, my legs started turning a bright purple colour (reminiscent of aubergines I think) when I stand up. Doctors think my lower legs can’t handle the extra blood volume, because the valves have been damaged by old blood clots. To avoid new clots I am to wear the anti-embolism socks 24/7, which in itself is not a big deal, and to do heparin levels tomorrow and increase the dose. How can we increase the blood thinner dose while I’m actively bleeding you may wonder… That’s kind of what I’m wondering too, but it’s a bit of an impossible situation at the moment. Hopefully it won’t stay impossible for long, but for now we’re trying to take it one minute at a time… And laugh. There’s a lot of laughter going on here at the moment!
I was still in my first trimester when we moved from a rental house into our own. I told two good friends and my mother I was pregnant at the time and, since the new house is in a different city, said nothing to other family members and friends. It may have been wrong, but without knowing how this was going to go (not that I do now) and with it being so early in the game still, I didn’t want people who cared about me and who have been through enough with me being ill all these years to constantly worry about my health and safety now too. So I said nothing. The phone got eerily quiet; so quiet that at some point I think I spent a whole day staring at it and trying to will it to ring just so I could talk to another human being about something….anything and distract my mind from all this for a few minutes. It has been a painfully lonely and difficult time.
These past few weeks I finally shared the news with a few close family friends and their response has been so unbelievably positive, I barely know what to say. My godmother will stay with us for a month to help. Family friends are making lists of baby equipment and are trying to get clothes, bibs and prams together from their friends so I don’t have to buy everything. A friend who has three children of her own, a husband and a job offered to come stay with us for a few weeks to help in whatever way we may need. A new friend, an 84 year old lady who has lost both of her children and is ill herself, noticed I put my feet up on a chair while I was talking to her a few weeks ago. She deduced from that that my feet were achy, which they are, and she got one of a neighbour to help her bring a comfy armchair with a footrest to the house so I could rest my feet. When we told her we didn’t want to take her chair away from her, she replied “Years ago when I was very poor and I couldn’t afford a chair, someone lent me one. Now I have one of my own and I can lend it to someone who needs it more than me”.
There are no words for people like that or for the kindness they’ve shown and are continuing to show. If there is one thing I have been trying to learn and feel, it’s that. Interconnectedness, love, support. And being grateful. Constantly. For a good minute, a good hour, another day of life, for warmth and friends and family… Not an easy or pain free “lesson” or one I ever set out to learn, but so far it’s more than worth it…..
And for a rather different bouncier note, that’s a little sneak pic of the (almost) finished and very pink nursery wall….!
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.
A few years ago I was diagnosed with, a rather mild form, of post traumatic stress disorder. My PTSD is related to hospitals, treatments, tests and all the gazillion forms of “torture” one can be forced to endure as a patient through the years. I worked with a psychologist to deal with this mild PTSD. I went to therapy once a week religiously for the past few years. I listened, learned, did the work and was able to go to hospital, see doctors and have tests without experiencing flashbacks, panic or feeling trapped. All that changed recently as, because of my little one, I’ve had to recount my medical history in more detail than I would have liked to more medical professionals than I would have liked in a very short amount of time.
Trying to explain the mental torment of PTSD is very difficult. By all accounts I’ve been through quite a lot medically, endured a multitude of painful, debilitating treatments and tests and have come out the other side. While that may be true, it is also true that survival always comes at a cost.
Yesterday morning I started experiencing back and tummy pain that came and went in waves. I was practically in tears by the pain’s severity and couldn’t find the strength to get up from bed, a most unusual scenario. I needed to go to hospital and I knew it. And yet I preferred to spend twelve hours curled into a ball of tears and pain on the floor in a desperate effort to escape a short trip to the emergency room. Please don’t get me wrong. I don’t enjoy pain nor do I wish it on anyone. But for me the experience of going to hospital is loaded with years of pain, despair and torment all of which come screaming back to me the minute I lay eyes on a doctor or set foot in a hospital building. The flashbacks permeate my being. The sensation of being trapped becomes overwhelming. I begin to think they won’t let me leave, that I’ll have to stay as an inpatient and go through endless treatments and tests again. The only thing I want is to go home or find a cupboard to hide in. I don’t care if the thought process is dangerous, illogical and deeply rooted in the past; the feeling is as real as it can be and the panic feels inescapable in the moment. I’ve frequently put myself in varying levels of danger by not going to hospital when I should have just to avoid that feeling being triggered. In fact I was ready and willing to do the same yesterday too.
Only at some point, after a day of pain and tears, I started having contractions. And it stopped being about me and what I was ready and willing to endure. I steeled myself, got up and went to the emergency room. I was taken to a delivery suite immediately and given opiods to take the edge of the pain. Doctors and midwives made sure the little one was doing ok. We waited. The drugs dulled the pain almost immediately and stopped the contractions. The diagnosis was a possible kidney stone. A pretty painful, but not a serious adventure after all. I asked to talk to a consultant, explained I would go back to hospital if I felt the same level of pain or anything else that might be dangerous for the little one or myself but conveyed that I wanted to go home for the night if possible. They gave me an ample supply of strong painkillers and sent me on my way. I came home, had dinner with my mum and slept in my own bed.
You may be wondering why I’m even bothering to recount this rather insignificant adventure here… The truth is because I felt my little adventure came with a few realizations and I wanted to share those with you. After we understood my PTSD had its triggers in hospitals and hospital environments, I did my best to steer clear of anything that even remotely reminded me of doctors, hospitals, imaging centers, nurses, clinics et cetera et cetera as much as possible (and you can understand how with a number of immune system disorders dodging doctors, tests and hospitals wasn’t always possible). While that was helpful in allowing us to form a long-term plan to deal with the anxiety that stemmed from my past medical experiences, it also created a high degree of anticipatory anxiety.
Anticipatory anxiety is a strange form of worry in that it involves a build up of stress and anxiety that arises when thinking about a situation that may occur in the future. It’s the kind of anxiety young children feel before having a shot. The mental torment of thinking about the shot is, frequently (but not always!) worse than the shot itself. This is not always the case of course and I, in no way, wish to minimize the horrors some PTSD sufferers have lived through and are forced to relive every single day. What I mean is that anticipatory anxiety can be paralyzing and all consuming and that, after years of psychotherapy, yesterday for the first time in what felt like a long time I was able to look one of my fears in the face and deal with it. Eleanor Roosevelt once said that one gains “strength, courage and confidence by every experience in which you really stop to look fear in the face”. Or that quite simply “You must do the thing you think you cannot do”. All I’m trying to say is that I think she may have had a point after all!
My little one isn’t here yet. I hope she will be soon, but I know with absolute certainty that were it not for her I would have never found the mental strength to go to hospital yesterday. I’ve often heard people say they are willing to stretch themselves, get over fears, go over any limits they think they may have and do what they previously thought to be impossible, all for the sake of their children. My little one isn’t here yet and yet I feel that yesterday I acted like her mother for the first time. For a few hours I consciously put her life and safety before my fears and limits and I stretched myself beyond what I believed was possible all because this immense gift that is my child deserves nothing less. My little one isn’t here yet. I hope she will be soon, but even if that day never comes I will spend the rest of my existence thankful to have experienced motherhood, however briefly.