Monday, 1 October 2012

An Apology, Some Regrets and a New Baseline

Firstly, of course, I have to apologise for having neglected the blog and my readers. There isn't one single, simple reason for this, but be patient with me and I'll try to explain.

The end of August saw the first anniversary of my wedding. As I reflected on the last year, and answered questions from friends about the first year of 'wedded bliss', I found myself overwhelmed by all the things that have happened in that time; all the medical and emotional changes that we've faced.

It has become increasingly clear that my husband and I are unlikely to have a family of our own.

I have a genetic disorder that has an autosomal dominant inheritance pattern. Any 'natural' child of mine would have a 50% chance of inheriting the same disorder. While I don't feel that life isn't worth living, or wish that I hadn't been born in the first place, and while I certainly wouldn't consider this disorder a reason to terminate a pregnancy, it would be irresponsible to plan a family without taking it into account. If a child of mine were to be affected by this disorder to the same extent that I am, I would feel extremely guilty. I have been told by my doctors that it's likely that I would spend much of any pregnancy bedbound, that the baby would possibly (or even probably) be born prematurely, with the risk of uterine rupture, further stroke-like episodes, further damage to my joints and internal organs (including my heart and lungs), and with potential problems for the baby associated with prematurity or rapid labour. Even if I were to 'get through' a pregnancy by sheer grit, determination and obstinacy, it's probable that I wouldn't be well enough to look after a child without a LOT of help.

I do know that other people have managed this, and my doctors have said to me that if it's something that is really, really important to me, they are prepared to work with me to make it happen, but they have all emphasised the risks and potential complications. I know that if, in my heart of hearts, I could not live without being a mother, we could make it happen. I don't feel that way, and though I feel sadness and guilt that I won't have children, won't ever hear the word 'mother' applied to me, won't give my own mother and my husband's parents the opportunity to be grandparents (though thankfully my husband and I both have siblings). My husband won't have the opportunity to be a father unless I die soon enough for him to remarry and have children. Obviously, that's not my preferred option.

Things recently have been bad enough that even the thought of starting a family has been pushed out of my mind. I can barely lift the kettle three times daily, let alone a child. At first, I assumed that I'd overdone it, causing extra symptoms, but it's now clear that this is probably my new 'normal'. Not only is my baseline considerably lower, causing more symptoms and requiring higher doses of medication, but my ability to handle any activity has dropped significantly. I went to a beautiful wedding ten days ago. I was thrilled to be able to celebrate with a close friend, and rested carefully in the run-up to the ceremony and reception. I timed my medications and rest periods so as to be as well as possible. I 'survived' (and loved) the day, but it knocked me far, far harder than I could have anticipated. I was totally bedbound for a couple of days, and was unable to walk even tiny distances within the house, having to lie flat on the sofa or in bed. My symptoms were completely uncontrollable, even with maximum doses of breakthrough medications, and this has only improved a little bit after a full ten days. I'm used to having to pace myself, and used to having to pay for any fun that I have, but this change is frightening for me.

There is still time to recover, given lots of rest, extra medications and IV fluids, but I'm scared that this might not happen.

There are so many things that I want to do. There are so many people that I love and I want them to be able to share my life. But I have so little to give. So little energy. I wish that I could give more, but everything I have is taken up with just surviving. The little that I can give to my friends - an occasional visit, postcard or telephone call - seems so inadequate. I am so grateful to my friends and family. They have kept me going, kept my spirits up through all manner of difficulties, and remained loyal and loving despite the hospitalisations, cancelling plans, and all sorts of other difficulties. I wish that I had some way to let them know of my gratitude, or to uphold my side of the relationship; to give back even just a portion of what I am given.

It would be fair to say that I am struggling at the moment, both emotionally and physically.

Naturally, I am a pragmatist. Things are the way that they are, and if I can't change things, I may as well get used to them and see if I can enjoy things as they are, rather than as I would prefer them to be. I know that things will be ok, but change is hard. Physical deterioration is hard. My failure to be a good wife, daughter, sister or friend is hard. But life is worthwhile. I love the world in which I live, and am grateful to have the opportunity to experience things and spend time with those I love.

This is all a part of my journey. Thank you for travelling with me!


  1. As always, Jo, your posts are so authentic and create such a strong connection to you and your journey. That is one reason why you can only post when you have the mental energy to write what is in your heart.

    I grieve with you at the thought that you and Richard will not be parents to your own biological children. You have so much capacity for love.

    But I can't let the closing comment go unchallenged that you are not a good wife and friend. You are an exceptional source of strength and comfort to all of us who know you. Your life lights the way to understanding what is important and real, as opposed to what is only a surface appearance.

    I thank you for sharing with us.


  2. Thanks Bill! I am so grateful for those people who share my grief as well as my happiness, especially you and Sue. Richard and I have a number of close friends here in London and we get so much pleasure from 'sharing' their children. I suppose, like being a grandparent, we get to enjoy the best bits without the sleepless nights, tantrums and snotty noses!

    You are extremely kind to say that I do give something back to my loved ones. That means a lot to me!

    Keeping you and your family in my thoughts, as ever. Please hug Sue from me and ask her to do the same for you!

  3. Hi Jo,
    I couldn't read this and not comment. I know I don't know you that well, but I am absolutely sure that you are in no way a failure to anyone. From what I know of you, I know that you're a brave, caring, beautiful, inspirational person. I have no idea where you get your strength from with all that you go through.
    Sending you lots of love and hugs
    Dawn xx