0

I am seriously nuts . . .

. . . on so many levels. Firstly, who goes ahead with a kitchen extension when they know that their child with a tracheostomy is going to have serious neuro surgery? Secondly, Moo is going to be seven. She’s had a tracheostomy since day one. I am on Facebook so much that friends refer to it as Brittiebook. Yet, I have never once thought to join a support group for parents of children with tracheostomies. And I do love a support group. As a rather extreme extrovert, the need to connect with other people is very, very strong. Annoyingly so, some might say. Thirdly, this level of stubbornness and bloody mindedness just can not be normal. Fourthly, at some point in the near future, I have got to deal with my issues with vulnerability. I mean, how can I write about my innermost thoughts and send it out into the ether on this blog but, yet, put me in front of a real life human being and I clam up like a, well, clam?

One thing at a time. First, the kitchen. So, when we moved into our house last year, both Mr G and I said from the beginning we were going to have to extend the kitchen. The house is beautiful but it still has its original floor plan which means that it’s not brilliant for entertaining a group of people. As a passionate cook, I have always dreamt of designing my own kitchen but never thought it was a possibility until this house. We discussed having it done in the new year and, as I am such a proactive planner, I started getting quotes as I knew that the lead time may be long. Then, fatefully, someone mentioned that I had enough time to get it done before Christmas. Well, that was it. The idea of Christmas in a new kitchen, having struggled to manage it in the old one, was too tempting and I went hell for leather to make sure it could happen. I still didn’t have to go ahead with it but I did, even though by this point we knew that Moo’s EC-IC last year hadn’t worked and that the Moyamoya had spread to the right hemisphere which meant another op before Christmas. My problem is that once on a roll, it’s really hard to stop me. I think I can achieve anything. That’s how I ended up having a baby in the first place, against all the odds. This attitude has helped me so much in the past and it means that things get done, even in the face of insurmountable odds. It does also mean that I can push myself to my limits and be blind to how much I’ve taken on. There is also the very real fact that had I not had the stress of organising a build, I would have spent all my time thinking about Moo’s impending operation and that, quite frankly, could have sent me into a severe depression. As it was, the anxiety didn’t hit until the Wednesday before. So day one of the build comes along and I have explained to the head guy, who is brilliant, that Moo has a trache and dust is a real issue for her, like a life threatening issue. I’m all relaxed . . .  until I walk out of the living room to find dust billowing down the corridor as they are smashing concrete with both the back and kitchen doors open. The head guy wasn’t there, to be fair to him, and he gets on the case pretty pronto. Panic stations! I freak, they apologise and I take Moo to her music therapy session at Shooting Star House, where the therapist takes one look at my face and asks what’s wrong. Cue Shooting Star morphing into the big brave knight that they are and coming to my rescue  . . . again. We have essentially decamped here until the dust settles, literally, which I hope will be the end of this week. There’s still at least another three to four weeks of the build to go. That in itself has been a bit of a blessing as Moo’s recovery has been somewhat slower than anticipated. I keep having to focus on the fact that at the end of this, we will have a beautiful kitchen and we can start next year with a clean slate. No builds, no major ops, all we’ll have to deal with is the MRI and angio to tell us whether the op has worked, which, quite frankly, is shit a brick terrifying in itself, simply because the last one, with its 95% success rate, did not do anything. We won’t even go into the fact that next year is an odd year and, as yet, I haven’t had a good odd year in ten years. (2005, lose Ziggy; 2007, nearly lose Moo in pregnancy, 9 weeks labour only to be told she was going to die, tracheostomy and seriously ill; 2009, MLB confirms that trache likely to be more long term thing; 2011 beloved mother in law dies from pancreatic cancer; 2013 Moo diagnosed with Moyamoya . . . ) So, yeah, I was a bit nuts to start a build now but there are positives to be had. I may, however, agree with Mr G now and hold off on the dog.

Now onto the support group. There is a very real, clear reason why I have not joined a support group or a charity supporting children with traches. OS-CS is so rare and Moo’s need for a trache is so unclear that it felt like I was on this journey by myself, really. Yes, she has a trache and that is common denominator but the reason why is a mystery and, invariably, that is what I would have been looking for; someone to tell me why she had one, when it would come out and how we would manage. As it was, my support found me. I have a lovely friend, now, in the US with OS-CS who has also passed it onto her daughter and they both have traches. She tracked me down because I once did an interview on behalf of St George’s when the gene was found. Her support has been invaluable and so cherished that she negated the need for anyone else. Of course, now, six years on, I realise that my experience with Moo, of her trache, her gastrostomy, getting her off of her gastro, her speech disorder, inability to drink sufficiently; all these things are useful experience that I can share with others. I’ve been a little bit self absorbed. I met a set of parents at Shooting Star with a little boy with a trache and no leak, who can’t speak, and saw in them the feelings I once had of needing to see a child beyond their little boy’s stage. I had a need to see that it was all doable, that life would be manageable and that my child would be able to have a life full of joy, wonder and adventure, even with a trache, that we could be normal. So they asked for me to be added to the group, as it is a closed, highly supervised group, and now I get the opportunity to be my friend, to be able to share my experiences and, hopefully, help others the way that I was helped. I get to pay it forward and that feels rather fantastic. Just like how I believe that we had to endure and go through all that we have been through so that we could make our contribution to the human race by being instrumental in finding the OS-CS gene. I feel rather grateful for my life again.

As a result of that group, I’ve “met” a couple of parents with children with OS-CS. This has just spurred me on to make sure that I write the page about OS-CS. I’ve got the info in genetics speak, just need to translate it and run it by my geneticist. That may take a little time but it is now on my urgent list.

As for the third and fourth issues, I think only a qualified therapist can help me there. We all have our foibles. No one is perfect. We are all, actually, quite perfect in our imperfections. Some of us just have a bit more work to do to be comfortable with that.

Advertisements
0

By the grace of God . . .

Now, I’m not one to force my religious views on anyone. Each to their own, I say. However, my mother posted a comment on my Facebook page that triggered a thought in me and I thought I’d share. She commented that she finds it hard to maintain her faith at times like these, referring to Moo’s test results.

It made me think. I am what might be called an agnostic when it comes to religion. Don’t get me wrong, I have an undeniable, unshakeable belief in God. It’s just religion I have an issue with. I was born into the Catholic church. Something I have held dear all my life, not because I was raised in the church. I most definitely wasn’t. Being Catholic was important to me because it is a part of my cultural heritage. My mother is from the Seychelles, a Catholic country, therefore it was a part of her and, as a result, a part of me. So deeply held was this affection that I was quite shocked and horrified when I found out that I had accidentally excommunicated myself by marrying outside of the church without my Bishop’s blessing. Having not been raised in the church, I didn’t know that I needed it.

Religion is basically another man’s way of telling you how to maintain your relationship with God. It’s rules and regulations that govern what you do and, if you do differently, you are doing it wrong. It’s the basis of most of the discord in the world and has resulted in countless pointless deaths, just because one person chooses to follow one religion’s guidance over another. Somehow, the fundamental principles of love, forgiveness and acceptance get lost. Your relationship with God is personal. It’s between you and Him. Who am I or any other to tell you how to maintain that? No one has the right to criticise my marriage except my husband or me. A relationship is between two people and is for those two people to run. It’s the same with God.

As for who God is to me, He is the rock that I lean on everyday, the best friend that I talk to, the Spirit that guides me. You may have gathered that I don’t go to church. Yet, every day, I acknowledge that my life is full of the blessings and miracles that God has granted me. Moo is one of them. Her test results were awful, unbelievably painful to conceive of, and yet, not once did I blame God. It’s not His fault. If it weren’t for Him, she would not be here at all. She died for six minutes on the day she was born. If nature had had its way, she would never have survived her birth. It is only by the grace of God that she is here today. I had nurses and doctors completely shocked and perplexed by her survival, telling me that it was impossible, that they don’t know how she did it. I know how. It was a combination of that little girl’s indomitable spirit and God holding her tightly.

People forget that we live on a planet with limited resources and that human beings are, essentially, a mammalian weed, taking over and slowly destroying the planet we live on. Animals and plants are going extinct, while we grow palm oil to make peanut butter smoother. Rainforests are being torn down, so we can have bigger houses, more land for cattle. Endangered animals are hunted down just for the fun of it. It’s barbaric. There has to be some control on the growth of the human population and nature does this with genetic tinkering. Not everyone can live to be 100. It’s heartbreaking when it impacts you but there is no other way. So yes, I could sit all day wondering “why her?” but, equally, “why not?”. It’s just the way it has to be, for someone. There is no one to blame. That would just be a waste of energy. I’d rather use my energy to love and appreciate who and what I have in my life.

So, yes, my life has some horribly painful elements to it but it also has a lot of joy and light and blessings and miracles. It has wonderful, loving friends and family. It has sunshine and showers, rainbows and puddles. It has laughter, a lot of laughter, and a few tears. It is rich beyond measure. But most of all, it has Moo, my joy and my reason for being. And for that, I thank God.

1

Live to eat or eat to live . . .

I’m reading The Body Book by Cameron Diaz on a dear, trusted friend’s recommendation. My first reaction was “why would I read a book about the body by Cameron Diaz, the actress and model and basic epitome of bouncy happiness? What does she know?”. My second thought was “now that was a very bitchy, judgmental thought.”

I have a close friend who we’ll call Monsieur du Sel (he’ll love that) who is an economist. His great passion, however, is photography. He has studied it in great detail and gets up at ridiculous hours to take landscapes. Now, just because he’s an economist, does that mean I wouldn’t listen to any advice he could give me on photography? Absolutely not. So why wouldn’t I read a book about the body by Cameron Diaz? She is a successful actress, which has bought her great fame and fortune, but, it turns out that her great passion is the human body and how it functions. And she has studied. Boy, has she studied. She doesn’t preach, doesn’t tell you what to do but the information you learn changes you. And she is very funny with it. I’ve burst out laughing several times. I think sometimes in our adoration of celebrities, we often lose sight of the individuals. No one’s job defines who they are and celebrities are no different.

Now back to the title of this post, the book got me thinking. I was a member of Slimming World. I loved it. We used to joke about how we were there because we lived to eat. We couldn’t understand people who “ate to live”. Granted that, at the time, we were talking about people who seemed ambivalent about food and didn’t really appreciate the gorgeousness or the delight that could be experienced from eating really, really yummy food but it strikes me now that that is one of the daftest phrases on earth.

Quite frankly, everyone should eat to live. We should all be focussing on what goes in our bodies and what it does for us. I started reading the book because I knew that my problem wasn’t what I was eating but the way I thought about food. If you change the way you think about food, you automatically change the way you eat. The thought is the cause, the eating is the symptom.

Now, I’m not eating that much chocolate, crisps and cakes hold no appeal. Seriously, this is within a week and I do have a sweet tooth. I haven’t had coffee for three days and I suffered with a cracking withdrawal headache. Proof that it probably isn’t that wonderful for me. I’ll still have the occasional cup, just not every day. I’m drinking more water than ever. I’ve never peed so much in my life. I feel more alive, more clear headed than I have in ages. Don’t get me wrong, I still absolutely adore food. I loooooooove it. I’m just really enjoying what I eat and getting an extra kick out of the fact that I know that every thing that I aim to put in my mouth is doing something wonderful for my body. Of course, I’m not such a zealot that I would refuse food at a friend’s that didn’t match these new goals of mine but, left to my own devices, I am looking at food and wondering what good does it do me. If it does me good, I’ll eat it. If it does nothing but feed me empty calories, then no thanks. My cholesterol level is going to love me.

I’ll tell you this, though. Shops and restaurants do not make this lifestyle choice easy. Wholegrain bread, rice and pasta are not on restaurant menus. I don’t even know if there is such thing as a wholegrain risotto rice, one of my favourite dishes. My local favourite supermarket only offered wholegrain spaghetti; no penne, fusilli or farfalle for me. It’s not going to stop me though. I’ll just make different choices; less pasta, more chicken and fish dishes. I will have the occasional cake or biscuit when out with friends but not in my house.

I do have to be realistic. It is one thing to be swept up in the excitement of a new way of living while you are reading the book that inspires it. It’s completely another thing to carry on after you have put the book down. That is why I won’t be lending this to anyone. I know myself. I can get very enthusiastic one minute and forget it the next. I have the attention span of a fly. So I’m keeping the book with me and I’m making sure that when I start to slip into my old ways, I’ll re read it. It’s that powerful.

Now, Cameron is my new heroine. Can you tell? I’m only half way through the book and am in the bit about movement. Now if I can change the way I approach that too, I am set to be one healthy 40 odd year old woman. It could help with my depression, my skin, my energy levels, my PMS, my stress levels, not to mention my creaky, inflexible skeleton and my self esteem. How wonderful would that be?

0

Some life lessons learnt the hard way

2011 was a really tough year. It was the year that I lost someone I loved deeply to cancer, my mother in law. As with the loss of a loved one, all manners of emotional chaos preceded and ensued after her passing. I wrote these life lessons four months after she passed away and I may sound a little bitter at times but it is all good. I needed to learn these and they have been the greatest gift.

1) Deep gratitude for a life lived really can assuage the grief of its loss.

2) No matter what my intentions or how well someone knows me, people can completely misinterpret what I say and do and judge me to be a bitch.

3) Sometimes I perceive a friendship that does not really exist. Some relationships in my life are very much on other people’s terms, they’re happy to take but don’t want to give because I’m not that important to them.

4) Just because I love someone and feel utterly loyal to them doesn’t mean they appreciate it or deserve it. Sometimes, you’ve got to accept that things will never be how you want them to be, no matter how hard you try to make it so.

5) I can’t blame or resent someone for their hurtful behaviour, if I haven’t told them it hurts me. How they respond is completely up to them and not my responsibility.

6) If I rock the boat, I should be prepared to be pushed out of it. Some people care about my feelings, some care more about their own and don’t want to know. It’s all part of life’s rich tapestry. Beautiful on the surface, with painful knots underneath. Just have to come to terms with it.

7) Some people really don’t understand that a relationship is only between the two people involved and shouldn’t be judged unless you’re one of them. A person’s perception of a relationship between two other people is never the reality. I was very disappointed and deeply hurt by the accusations leveled as a result of this one, but I learnt from it.

8) Even if you don’t agree with someone’s point of view, you can support them just by listening and being there.

9) Sometimes the anticipation of a painful conversation is often far worse than the conversation itself.

10) My perspective is my perspective. If I’m hurt and raise the issue, it’s because I want to resolve it which can only be done by discussion, mutual respect and open hearted listening. It’s not up to me whether you want to participate.

11) If I love you and something is important to you, that makes it important to me and I want to know, but I can’t be held responsible if you have decided not to tell me.

12) I really can not bear lying, false promises and deception. Tell me the truth. I can handle it.

13) My husband and my daughter really are the most important people in my life. I will hurt myself, if I feel I have to, to protect them.

14) I really have some truly lovely friends, my urban family.

15) If I make it a priority to spend time with you and you do not do the same, eventually I will change my priorities. I want to be a part of your life but only if you want to be a part of mine.

16) If someone sincerely apologises to you, it’s up to you to decide to believe them and let go of the associated pain. If you do, it really can heal years of anguish and improve your relationship dramatically. I wish I’d asked for the apology years ago.

And finally . . .

17) If you put too much on Facebook, no one needs to call you to find out what you’re up to. Have to stop using it like a diary and start being more private. This will make my husband really happy. At last, he’ll be able to have conversations with friends where they don’t already know what he’s going to say!

Since I wrote these, Mr G has actually joined Facebook so he is as much in the know but now I’ve started a blog instead! People will have to consciously choose to read my witterings, rather than being blasted by the newsfeed.