High Needs Child Series: A Heart Warrior Mum's Account

This week's post was written by Vicki Moore (aka NICU Mum), and is so beautiful and heartfelt. Elijah's start in life was far from easy and I can't even begin to imagine how difficult it must have been for them all. 

I have never really thought of Elijah being a high needs child, however that is exactly what he is. I spent many a month denying this fact and willing that it wasn’t true. But it was, Elijah was different. No matter how normal our day to day lives may appear to the outside world there are times we have to face up to it Elijah is different. He was born with a Congenital Heart Defect called Tetralogy of Fallots, he also suffered a Neo Natal stroke. Elijah had a full repair operation via open heart surgery at 6 months old. When we were discharged from NICU after 9 long days this is where our journey began as being the parents of a high needs child.

We were visited every few days by the NICU outreach team, I never had to even go to the health visitor to weigh Elijah this was all done for me. We were told to try and live as normal lives as we can. Easy to say when your child doesn’t have a looming life threatening operation. I tried to get involved with the regular new born activities, baby classes, mummy groups but if I am honest I couldn’t face them. I couldn’t face the pity, the questions so I avoided them. When Elijah started displaying symptoms for colic, reflux etc. all of the usual suspects I couldn’t just go get something from the shop I had to go see the doctor. No health visitor wanted to touch us with a barge poll. When Elijah had his jabs I had to get the go ahead to even give him Calpol! When Elijah got his first colds, we ended up in hospital, twice.

I couldn’t risk just leaving him with anyone so I didn’t really go out for the first few weeks. There was a risk Elijah could have an episode and he would need to be hospitalised. It wasn’t fair to put that risk or pressure on someone. As Elijah spent the majority of time with me, before his op he did develop quite bad separation anxiety and wouldn’t like to be held or looked after by anyone. We also didn’t dare move him into his own room, so he co slept with us until he was a year old. Just in case he had an episode or something happened to him whilst he was in recovery. As a result, it was a lot harder to move him to his own room, and he still wakes in the night and occasionally comes in our bed now.

I then had to begin to advise family and friends to stay away if they had colds, or had been ill. I couldn’t risk the effect it would have on Elijah’s heart. We knew he had to be the healthiest he could be for his operation. Overall he ate well, but from day one I had to note down each feed, the amount and I remember the panic when Elijah wouldn’t eat. If he didn’t eat, he wouldn’t gain weight, he wouldn’t be strong for his operation. When Elijah developed silent reflux I had a full blown anxiety attack. We spent hours up the hospital multiple blood tests, heart scans, development checks you name it. I think we could probably tell you the whole hospital menu if you asked. I think this is where I began to develop a slight fierceness, I pushed for what I thought was best for Elijah and wouldn’t let anything prevent this from happening. I researched everything I could so I could go into appointments with the correct questions and would understand their answers. They tended to respect this and were always honest with me.

From the threat of germs and documenting everything Elijah had every even drunk or eaten we eventually managed to drag ourselves through to the operation. This in turn led to a whole new load of things we had to be weary of, not being able to hold Elijah under the arms for about 2 months. Giving him his pain relief every few hours for about a month afterwards and making sure he was eating and gaining weight. Again this led us to spending more time in hospital with check-up appointments and scans. Physically, Elijah was doing great, mentally he developed night terrors after the operation. This had really left its mark on us, and I began to struggle. I couldn’t get over what we had been through and developed PTSD.

Something began to happen, we spent less and less time at the hospital. Our appointments became less and less frequent, but it didn’t change the fact we had a high needs child. When it was finally time for me to go back to work it was time to find a nursery. We were so lucky, when I enrolled Elijah they knew he was going to be a high needs child. They assigned us an amazing senior key worker who took her time to understand his condition, and what to look for. We had a care plan and went into details. She knew I worried and kept me updated during the day as well. Like any child starting nursery they would pick up some germs they haven’t been exposed to before, with Elijah we needed to be especially careful. Still in recovery, they let us know if something was making the rounds and we would choose to send him or keep him at home. They also had to still be super careful with him as we couldn’t hold him under the arms. They were amazing, but all of this prep work was just to send him to nursery something which for most people us a seemingly easy and normal thing to do.

It could be days, weeks or maybe even a month where it seems we are living a normal life and raising a normal little two-year-old. Then something with come, like smack to the gut to remind you that actually no, you have a high needs child. For me at the moment this is flu season. As everyone is getting excited for Autumn, Halloween and Christmas (Me included!) I am also thinking of the dangers of cold and flu season to Elijah. He is now old enough to have a flu jab, me Greg and immediate family are all getting one too. The flu for any child is dangerous, for Elijah it could be fatal. He could have a heart attack. Even though the weather has only dipped slightly, the heating is on and Elijah has his coat and hat on. Yes, this may all seem a bit much but in my eyes I have to do everything I can to protect Elijah from getting ill this winter. He does have his fair share of colds which don’t seem to affect him, any worse than another child his age. It has been a very long time since we have had to be admitted but that threat is always there.

I think when you have a high needs child, no matter what form that may take you can never forget it, no matter how ‘normal’, things seem. I know that we do not have it as bad as it could truly be, and for that I am grateful. There is also a lot of anxiety and loss of control associated with being a mother of a high needs child. You just cannot predict what will happen even if on paper you are doing everything right. If you do everything you can to try and prevent something there will also be a curveball. Sometimes it can be hard trying to get across your worries of being a high needs parent, they look at Elijah and see a healthy little boy they do not know why I am fussing so much. There is a very fine line between letting Elijah go off and explore and be a ‘normal’ little boy and trying to keep him safe, as there are dangers that will not be a danger to other children.

The future scares me, this is where I believe Elijah may resent his condition. He cannot get a piercing or tattoo and won’t be able to drink or smoke. While the other teens of his age group are doing this, Elijah will likely need a further surgery. So far, nothing exerts him too much, he keeps up with everyone else but when he gets to high school this may be different. He may tire easily, he may not be able to take part in as much sport as his class mates and we have to watch if he cannot maintain his weight gain. Although this is 10+ years away it is in the back of my mind.

It took a lot of work on myself but I wouldn’t change being the mother of a high needs child, I wouldn’t change Elijah. This is the family we were supposed to be, and he has made me a better person, a better mother because of it. When others ask about Elijah’s condition, and the op I don’t want their pity, I want them to ask questions. I want them to go and tell others, as this is raising awareness for CHD. One in 100 babies are born with CHD and many will become heart warriors (someone who has had open heart surgery) just like Elijah. Things didn’t go to plan, I didn’t get my envisaged start to motherhood that I wanted, but I have a funny, kind and gentle little boy and for that I am proud to be a heart warrior mum, and the mum to a high needs child.

For more of Vicki's wonderful writing and work helping other mothers', please check out the links below:

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Blog - Confessions of a NICU Mum

The Childhood Stories

Over the past month or so I had had a collection of stories published up on Life with my Little Duck starting off during my teenage years, moving into my 20's and then ending today. It was a really interesting trip through thoughts and memories so I thought I would provide a little recap here and link them all in one place for anyone who would like to take a little journey through a few decades and a few countries... Five years ago I started to write a book loosely based on my life/experiences, but I gave up because it was both too close to home and because I didn't think anyone would be interested. I am now putting together several collections of essays which I think will be easier for me to work on and actually finish. In any case, here are the links to all of the stories... Thanks to Ally for publishing all of these stories, as well as many other wonderful and heartbreaking ones. You can see all of the stories from her Childhood Series up on her blog here. 

The Invisibility Cloak - wrap yourself in it as soon as you leave the house...

Survival Modes - high school is a real minefield.

Run, Run Away - everything is just too much and there is no escape.

Young Heart, Old Soul - a different life in different places.

Never Let Go of the Rainbow - a decade in a city that never sleeps.

Everything will be alright
Everything will turn out fine
Some nights I still can't sleep
And the voices pass with time
The Sisters of Mercy - Time To Cry

Ramblings: Twenty Years a Vegetarian

As a kid I was one of those people who always ate what I liked the least first, and saved the best until last. I still try to do anything that way even today, although procrastination does tend to get in the way sometimes. In any case, I still remember quite clearly chopping up meat or fish into small pieces and shoveling it down my throat as fast as possible so as not to have to taste it or even chew it. It didn’t matter if it were steak, burger, salmon or squid; it was rare that I would actually enjoy anything that had to do with meat or fish. The only things I can actually remember being OK with were mincemeat (ground beef), canned tuna and chicken breast (as long as there were no “black bits” in it). In our house growing up you finished your meal whether you liked it or not (pretty common procedure back then), so I just sucked it up. The idea of eating ribs still conjures up nightmares and the texture of those little octopi in my mouth will never be forgotten. Oh, and we lived above a butcher’s shop for a while. I still remember the smells.

I suppose it came as no surprise when I suddenly decided to become a vegetarian at the age of 17. My sister used to laugh at me and talk about “delicious bloody steaks” in a loud voice around me (she was a really annoying 15 at the time so that was to be expected), but my mother seemed to release a huge sigh of relief and most of my friends didn’t find it to be very weird. To be honest, I think I just said it out loud one day and decided to stick with it to save face. And I say that not because I didn’t want to be a vegetarian, but that becoming a vegetarian at 17 in France in the 1990’s wasn’t an easy feat. It meant that I actually had to start thinking about what I ate a little more, and making sure that whatever I ate didn’t contain any meat or meat by-products in it.

My mother had been vegetarian for a few years in her youth and gave me some recipes to try. She even started to make things separately for me on Sundays when we had a roast dinner or other family meal. Sundays were the only days that we actually made time to eat together as a family at that point, as work, school and friends seemed to get in the way during the rest of the week. It’s only now when I make different meals for everyone that I really realize how much of an effort she made to make sure that I always felt included during those meals, especially during special occasions like Christmas and Easter. At restaurants my go-to meals would be “a salad without the bacon, ham or tuna please”, or ravioles (still one of my favourite dishes), or an “omelette au fromage”, or just a simple baguette with Brie. There were many times when I had to send something back because it still had meat in it, or I had to pick around something because I was too embarrassed to say anything. I went to visit a friend in Blois for a week and we ate lunch at the same restaurant every day… On the final day, after ordering the same salad minus any meat the chef came out and asked me if I was vegetarian and reprimanded me in the nicest way possible for not saying anything. He had so many meal ideas that he would have loved to make me! From that moment onwards I decided to be more confident and while I still had the odd “oh my gosh I thought I was clear about being a vegetarian” moment, I ended up eating some amazing meals. Just because a country appears to have a very meat-heavy menu, it doesn’t mean that a vegetarian cannot eat well and healthily. You just have to think outside of the box a little and not be afraid to speak up.

I never actually missed meat. Around the age of 19 I suffered from a bout of severe anemia, most likely due to growing pains, too much running around working and playing and a bad diet of pains au chocolat and ramen noodles. People advised me to go back to eating some steak, but I couldn’t stomach it. The anemia disappeared once I settled down into a healthier routine for myself, and never came back. My iron levels have been stable since then, even through two pregnancies and tandem nursing children. For me that is proof enough that we don’t NEED to eat meat, our bodies absorb nutrients from a varied diet, and I am pretty sure that it is healthier for us to not have to digest meat or meat products…

It’s been over 20 years now and since I became vegetarian I have tasted meat exactly twice. I was drunk both times and thought it would be funny. Once I took a bite of bacon. It was disgusting. Another time, I tried a cecina (salted beef) taco. It was gross. Nothing has changed for me: I still can’t stand the taste or texture of any kind of meat, fish or seafood. I’m a real texture AND taste eater, so if anything resembles or tastes like meat or fish I can’t eat it. You know how smoked cheese can smell like bacon? It tastes like bacon to me and I can’t eat it. Or if a meat replacement product has exactly the same texture as meat I have to push it aside. I like the idea of these products as it’s a great way for those who actually like meat to cut down on their meat consumption, but they aren’t necessary for me. It’s easy enough to replace meat in dishes like chili or shepherd’s pie with beans and chunky tomatoes. I’ve been using a little bit more of these products recently in dishes, just so that my other half doesn’t feel like he is missing out, but during most of my vegetarian years I have done without.

I will not handle or touch meat or fish. It honestly makes me want to vomit, the idea of eating it, the texture, the smell, so I refuse to have anything to do with it. This therefore means that as I cook most meals for the girls they also have a vegetarian diet for the most part. I say for the most part as I am a little hesitant on the subject. They have both eaten meat before, from their father’s plate, but it’s been a rare occurrence, and Luna isn’t a fan (but she isn’t a fan of much anyway). Aurora seemed to enjoy it, but she enjoys most things, so that wasn’t much of a surprise. They do eat the same diet as me, which is a bit of everything outside of meat, fish and seafood, and it’s important for me that anyone ask me before giving the kids anything to eat (I had to grit my teeth when a shopkeeper gave an 8 month old Aurora a lollipop once; and realised too late after the fact that my sister had fed Aurora meat without checking with me first, and I ended up not saying anything because it was hours later – please people always ask parents if you can feed their kids something before you do, you never know what kind of allergies or intolerances they may have. I don’t blame my sister because she was just having fun feeding things that Aurora obviously wanted to try but I obviously still need to learn to be a better advocate for my beliefs). Long story short, the girls will choose what they want to do when they are old enough to make the choice, but in the meantime we will offer them a variety of what we eat at home, which will rarely include any meat unless Cesar is cooking it for himself.

I’ve toyed on and off with the idea of becoming vegan. I like the idea of never eating anything “animal” again, but at the same time I love cheese, and appreciate other dairy products and eggs. Then again, eggs have to be fully cooked all the way through, especially the white part, and I can’t eat certain types of yogurt due to their texture. But I also can’t find anything that actually replaces the amazingness of cheese, and to be honest I don’t really want to either. So I have been thinking about reducing my dairy consumption, maybe halving it, and would love to start buying milk and eggs directly from local farms, or even own our own chickens at least. Even the dairy products labeled “organic” and the eggs labeled “free range” aren’t as cruelty-free as we imagine them to be. It’s hard to navigate through all of the products available, the prices ranging from dirt cheap to outrageously expensive, with labels full of words that make them seem fresh and organic, but don’t actually state “how” organic or fresh they are.

Aurora has not yet really been introduced to cow’s milk yet, because whenever she has a couple of sips it goes straight through her within minutes. She sometimes has yogurt, and often has cheese because she loves it (and she is my daughter), but I feel like she has an intolerance, and probably has tummy ache at times that I have possibly interpreted as teething pains (although there are a lot of them too). So I have decided to remove all dairy from her diet for a couple of weeks and then doing the Milk Ladder which is one of my allergy mum friends is using (you can check out Ally’s awesome blog for allergy-mum related articles and recipes). If things aren’t any better by her 15 month appointment in November we will see what the doctor says. I suppose this is as good a time as any to cut down on my own dairy consumption then. I shall not be changing anything in Luna’s diet as she only ever eats when and what she feels like anyway (and that’s a whole other blog post).

I do want to add that a vegetarian diet isn’t immediately healthier than a meat-eaters diet. Being a vegetarian doesn’t just mean removing meat and fish from your diet and continuing along your way. It’s important to know what you are putting inside your body and aiming for as varied a diet as possible. In my opinion this isn’t just because of nutritional needs, but also because it’s easy to get bored when you have no variety. I love an array of colours and always try to create colourful dishes. Green, red and orange always add wonderful pops of colour to anything, and as I don’t like dark leafy greens (no kale here thank you very much), there are always peas and carrots, red peppers and mixed greens in the fridge. I love lentils, beans, chickpeas, tofu, root vegetables, pasta, fruit, most vegetables, all kinds of food deemed “healthy”, and they are naturally a large part of my diet. But I also love chips and fries and candy and if I didn’t have to worry about making sure I remain somewhat healthy I could also live off of that for the rest of my life… It takes work to eat any kind of a healthy diet, and vitamin deficiencies can appear with any diet if it is not varied. 

Several completely unrelated items spurred the writing of this article. One being several people raising their eyebrows when I state that I would like my kids to be vegetarian (no, I don’t think I am depriving them of anything). Another item is the mere idea of killing off huge amounts of beautiful wild horses to create space to build places to kill huge amounts of cattle makes me feel physically ill. And last of all just because I look back at those days in my youth where I wanted to vomit and cry, but forced the food down without showing any of my repulsion, and remind myself to take the time to listen to my kids when they say that they don’t like something. It’s enough proof to me that we all have different tastes even before we can talk.

Ramblings: Luna Marlena's Two Year Summary

The latest photo album is up on Flickr HERE.

It’s hard to start from where I left off three months ago as these past few months feel like a mini lifetime really! Three months ago we were prepping for our move across the country and I could tell that Luna was really feeling all of the changes. She has always been very sensitive to change, whether it is physical, mental or emotional so there was no way that she was going to go through a cross-country move without issue. Thinking about it now the poor kid had a couple of life-changing events happen within 6 or so months of each other, first the arrival of a little sister, then a move. Neither of the events being traumatizing of course, just a bit of an upheaval in the world that must have seemed a lot simpler before!

Ah, two years old… A milestone for Luna and for us too! No longer a baby, but a child, growing so fast and changing on a daily basis. I remember writing about some of the everyday difficulties of raising a high needs baby and toddler back in January, and also mentioning how communication is the key to helping a toddler avoid a tantrum. And it’s very true – I have found that once Luna actually started speaking real words we actually noticed a significant decline in her tantrums and outbursts. Not that they have stopped happening, but there are so many more times when I can actually talk her out of a pending eardrum-shattering scream. It all kind of clicked a month or so ago and now words are pouring out, things that I don’t even remember teaching her but that she picked up somewhere along the way. It’s a whole new world for us all and so much fun! Like when she opened a box of toys and exclaimed “oh my god!” in my voice, or when I ask her what she wants to wear and she responds “pink!”. She can now tell us that she wants her auntie to come back and that she wants to watch Peppa Pig, or that she wants to go to the park, or drink water, or eat a cookie. We have a long road ahead of us of course, but I’m so happy that we are seeing some progress!

We had Luna’s two year well child check-up this week and for the first time in, well, ever, she let the doctor examine her without screaming. We have obviously changed doctors and Luna’s new doctor listened to my concerns about her not handling doctor’s appointments very well and was so gentle and attentive that she actually stayed calm. She wasn’t so calm for the weighing and measuring portion of the check up, and the assistant wasn’t very helpful, so we ended up getting a measurement that was way too high (35.5 inches long!), but her weight was about right (I weigh her with me at home). In any case she now weighs a little less than 25 lbs and measures just over 33 inches. She’s not a tiny toddler anymore! But she is definitely still very much underweight and we have to go in for some routine and not so routine blood work just to rule out any thyroid or blood sugar issues. But, as the doctor said, it is most likely just the way she is and we aren’t worrying about it. She’s shot up over the past few months and although she’s so picky about her food, she still nurses around the clock, so I know she’s getting the nourishment she needs. She definitely has more than enough energy anyway!

As you can probably see from the photos Luna has beautiful curls, and I have had a hard time working out what to do to keep them from becoming a tangled mess. Combing them out has always been a nightmare, and even when I tie her hair back it is still all knotty when she wakes up in the morning! After one particularly horrid combing out process where I had to actually leave globs of hair conditioner in it for an hour and then comb it out amidst bribes of going to the park with cookies if she let me finish, I realised that I needed to brush it without fail every day, even if she screamed… But now it is long enough to be braided and it has changed our lives. One or two braids before bed and no more knots! And it looks so cute too, my little Pippi Longstocking! It’s amazing how fast baby hair grows too - it will be all the way down her back by her next birthday. I had long, long hair for most of my youth, and even though it annoyed me in my later teens, I definitely don’t regret it now. Of course we are going to have to cut her hair at some point, and if she wants short hair then she will have short hair, but I am totally going to have fun with it before that happens!

Talking about birthdays… I am really happy with how this one went! I made a pink cake with white frosting and drew a big goth Peppa Pig on it in black and pink icing. I used to love baking cakes for birthdays and realised how much fun it was again. There I was, all alone in the kitchen giggling to myself at 11pm while everyone was sleeping, drawing this ginormous Peppa Pig on a cake. And it actually turned out OK as she recognized Peppa! For once I didn’t feel like I had failed on the whole Pinterest worthy mummy thing (ah who am I kidding, I couldn’t care less about all that!). Cesar and I put her little red tricycle together and added an old-fashioned horn to it (regrettable addition if you value your ears). I snuck out in the morning with my mother and got some balloons and treats and we had a little birthday party for Luna when Cesar came home from work, including of mini burritos made of her favourite foods: cheetos, guacamole and black beans. She also had a surprise visit from all of her new friends who sang Happy Birthday to her. She took everything surprisingly well, no tears and a lot of laughter, even though she was a little overwhelmed at times! My mother always used to make sure we had lovely birthdays so I hope I can pass that along to my little ones. Especially my cake decorating skills! (Kidding).

I’m very proud of how Luna has worked her way through all of the changes over the past few months. Yes, children are adaptable beings, but that doesn’t mean that it’s always easy! Going from being with her mummy 24/7 to having to share that time with a little baby, and then having more people around her hasn’t been a picnic in the park for her. But she seems to be navigating through it all quite well. Yes, she still has some pretty epic tantrums, and yes she does get upset and even aggressive if Aurora dares to touch her toys, but those moments are also peppered with happy, sweet and adorable times of play and hugs and conversations. She is now learning how to deal with the fact that Aurora can move around all by herself (and very fast too), so the concept of sharing is becoming more of a reality. “NOOOOOOO BEEBEE” has become a constant phrase in this family, either followed by her patting Aurora on the head affectionately or kicking her in the chest. I’m sure they will learn to play together one day. It won’t be much longer before Aurora is the same size as Luna anyway, and with the way she is intent on standing up and walking, they will be running around together before long!

It’s been wonderful to see her get to know her Grandma and Auntie on a day to day basis (and this goes for everyone really). I didn’t realize how much we were all missing having family close by until we moved. I think Luna will always take a little time to get used to “new” people, and it takes a while for her to be completely comfortable, but once she is she doesn’t forget! I was also able to leave her with our friend Tiffany for a few hours while I went to the dentist, and she only cried a little when I left. And while we did have very supportive friends back in NYC, it really does make life a little easier having family close here. And of course it’s so heartwarming to know that my kids will grow up having their grandma, aunties and uncle close by.

And now for the next steps on the journey, actively moving towards full potty training (she’s in pull-ups and knows what a potty is so I just now have to encourage the use of it), learning the alphabet and building up Luna’s vocabulary. Possibly even getting her nursing sessions down to a couple a day for my own sanity. We are currently reading The BFG together and it reminds me of how obsessed my little brother was with it when he was young. It’s like revisiting an old, old friend. Reading all of my old favourite children books, Dahl and Blyton amongst others has been inspiring me to take those ideas I had when Luna was born and really do something about it!

So… I’ve been writing these posts for two years now, and I have found that what I have created is better than any baby book, and will therefore be making a book for each child out of each post, including the photos. But this also means that, apart from yearly posts, from now on I will not be posting on a regular monthly or every three month basis for Luna anymore, but more on a random basis, after a big milestone or change, or just because I feel like it. It feels so bittersweet, looking back on the past two years, remembering the blur of those first few months, never sleeping, ever, watching her grow and change and become this little being who is so unique and special. This won’t ever stop of course, but sometimes I would love to stop time for just a little bit and hold these moments for a little bit longer.

Ramblings: Of Christmasses Past, Present & Future

I wrote this on Christmas night, after a beautiful day with my family.

And while Luna sleeps curled around my full belly, that sleep that only babies have when they have had their fill of sleepy mothers milk, I reflect on Christmasses past, those of many, many years ago, those of not that far ago in the recent past.

Those times in the tiny village in England, a few decades ago, a pretty Christmas tree and snow on the ground, Listening for Father Christmas from the top of my bunk bed, wondering if I would be able to hear the reindeer land on the roof. Pillow cases full of presents under the tree on Christmas morning, playing in the snow with Daddy and eating our full of dinner made by Mummy.The same food that I continue to make at Christmas today, in some shape or form.

There was that Christmas is Holland that wasn't really Christmas because everyone celebrated Sinterklaas on December 5th, where we felt a little strange and out of place, as if Christmas had just been postponed for a year and would be back the next when we flew back home to be with the rest of our family. England just always felt just the way it should at Christmas with the lights and the bells and the shops and the TV shows and the tinsel and the songs. While I spent many a Christmas in France growing up, amidst the snowy mountains, a fairytale Winter city, nothing beat the Christmas feeling in England. Mainly due to nostalgia of those Christmasses spent as a child waiting for Father Christmas to surprise us, leaving mince pies for the reindeer and school plays with The Snowman song in the background. Watching Scrooge (the one with Albert Finney and Alec Guinness) and listening to The Pogues and Wham and Band Aid.

Then came the time when I would travel across the ocean to California to spend Christmas with my family, discover new friends and new traditions, Christmas in the warmer weather and the sun, everything so much newer and cleaner and bigger. A strange type of Christmas which felt paradoxically home-like and very, very foreign. There was one Christmas spent in Israel where 12 of us  all banded together and had our own Christmas dinner and party in the volunteer house, the kibbutzniks helping us have a merry Christmas away from home, in a country where the majority of the population does not celebrate the holiday. A mix of different traditions and foods from all around the world, celebrated altogether. A Christmas Day spent on the beach in Tel Aviv, sunshine, falafel, bourekas and sachleb, with bare feet in the sea.

And then, 10 years ago, New York City became my home. The city that brings Christmas to life like no other. Christmas trees for sale on the streets, beautiful lights all over the city, pop-up ice skating rinks and beautifully decorated trees, snow and ice and shows and laughter. Christmas parties and Christmas dinners, the search for Christmas crackers and Mr Kipling’s mince pies. Every year new traditions were created, until this year when for the first time in our lives, I spent my first Christmas with both of my loves together, my wonderful boyfriend and my beautiful daughter. The excitement at finding that perfect present, wrapping it up and putting it under the tree, waiting to see how she would unwrap it on Christmas morning. Devising menus for Christmas Eve and Christmas Day, based on our own childhood traditions and ones that we wanted to create. Waking up together and dressing up, just because we felt like it. Wishing people a Merry Christmas on our walk and feeling so happy and blessed, as this is how life should be.

While I reflect on all of those special moments in the past and this Christmas that has just gone by, I also have to think of those in the future, and how one day I hope that Cesar and I will be able to sit back and watch our children and grandchildren create their own traditions. Christmas will always be my favourite holiday, and there will always be something so special about it, something that transcends the gifts and the food, a feeling of happiness, joy and gratefulness.

Ramblings: Luna Marlena's Eighth Month

This  month's photos can be found HERE.

While I type this (with one hand) Luna is fast asleep in my arms, my playlist is playing a mix of my female artists and the only lights on are those of our beautiful Christmas tree and the “Love” light Cesar made for us the other day. It’s all very peaceful and relaxing! It has, however, been a really, really busy month again! With the wonderful last minute visit from my mother, and then Luna being super ill during Thanksgiving, and all through this I had to work about 10-15 hours a week on some writing assignments, I didn’t even see December 9th coming up until it was here! Luna is 8 months old now and it’s the last month of the year. Last year we were looking forward to our last Christmas as a couple and anticipating this coming Christmas as a family of 3. We both hope that by next Christmas we will be a family of 4, so we are going to make this one extra, extra special for Luna, as while she won’t remember it, she will at least have photos and videos to look back on.

I actually don’t know what Luna’s weight is anymore! When we went for her cardiologists check-up at the beginning of the month she was 18lbs. Bear in mind that 2 weeks before that she had been 19.5lbs at her pediatrician’s. Then when we went to the pediatrician’s 2 weeks ago she was 20lbs, and then 5 days later at the hospital she was 15lbs. I know every scale is different, and the last one was after 5 days of being sick, so I’m guessing she is somewhere between 18 and 20lbs. I was dreading the cardiologist check-up. It’s hard keeping an infant still for all of the tests, especially the echocardiogram because it takes a while. It was actually a lot easier than I thought it would be this time around! I sat on the bed and nursed Luna while the technician did the tests. Once our cardiologist had reviewed everything we met with her (she’s so absolutely lovely I just want to hug her every time we see her). While Luna’s ASD hasn’t got any smaller and she will most likely still have to have an operation before she is 5, we had some really, really good news. Her pulmonary stenosis, which can get bad really, really fast, has gone away! Her body corrected it all by itself. We are both so relieved. Now I am just hoping that her ASD will decide to close by itself too. I’m so glad we had this appointment before Luna got a viral infection and then Roseola as I would have been even more worried!

Between the cardiologist visit and Thanksgiving/Luna being super ill, my mother came over for a week. It was the first time she had actually been able to visit while on holiday, the two other times that she has visited she was also working (she was here for Luna’s birth though). It was wonderful to have her here, for her to have loads of time to cuddle Luna and talk to her and play with her. She was able to witness the emergence of Luna’s first two teeth (bottom), and Luna’s unwillingness to ever sleep. I’ve been known to fight sleep a lot in my life and have developed a high tolerance to sleep deprivation, but I would really love it if Luna would realize that she isn’t missing out on anything (as I write this, now at 10pm she is happily playing in her baby jail – earlier fast asleepness was just an evening nap). Cesar and I also had our first date since before Luna was born (I think the last time we went out together was when I was 40 weeks pregnant). We were gone for about 3 hours during which we had dinner in an Irish pub in Sunnyside and walked to the Irish shop so I could get tea, crisps and chocolate). My poor mum! Luna cried for 2/3 of the time that we were gone! When we walked in you could tell she thought we had abandoned her – and then her face just lit up and all was forgotten. It was nice to go out together like that, but both of us are quite happy relaxing altogether at home nowadays, so I don’t know when we will revisit this date thing. I also don’t want to put Luna or anyone else through the crying thing again! I know that we are always together, and I know that she has separation anxiety (unless she is with Cesar she will cry if I leave the room), but in my opinion it’s just a phase, she’s just learning that objects and people can come and go and she will get used to it at some point in time. My mum, who happens to be an amazing photographer, took some wonderful photos during her stay, all of which can be viewed HERE.

So, Luna started pulling herself up to a standing position a few weeks ago, and what began as a very wobbly endeavour, is now becoming more and more confident. She can now sit down from a standing position which reassures me to no end as I have been trying to break falls whenever I can, but sometimes I’m just not fast enough. She also seemed to figure out how to crouch down to pick up a toy this morning, and then pull herself back up again. She likes to hide toys under things and will scream with delight when she finds them again. And then, for the most endearing one, she started calling me “mehmeh”. She has been saying “mamama” and “dadadadada” amidst other things for a while now, but my mother kept saying that she was calling me “mama” while she was here. I just passed it off as babbling, until one day she stuck her arms in the air, looked at me and said “mehmeh!”. It only happens when she wants to be picked up or she falls over, but it makes my heart melt! Her favourite words are still “KA!!” (said in a sort of sharp whispery, kind of channeling Gollum, voice) and “DA!” (said in the same voice).

I look at pictures from 8 months ago and can’t believe how fast she has grown in such a short space of time. Her face is beginning to change just slightly, and while she is still the spitting image of her Daddy, she is beginning to look a lot more like me as a child. She has so much personality already, such a little person now. She’s going to be just as stubborn as her mother! I love her unruly hair that I refuse to cut until she is 1 – I know it may seem like a silly superstition, but when can you have unruly hair if you can’t when you are an infant?! She was born with a full head of hair, but with bald patches that are now finally beginning to grow in. So she will keep all the curls and devil’s lock and dreadlocks for the next few months. And then maybe we will get matching haircuts ;)

I started writing this over 24 hours ago, and between spending quality family time together on Cesar’s day off, finishing up writing assignments and getting (exciting) new ones, and playing in the snow that didn’t stick, time is running away from me. All I want to do right now is curl up next to a sleeping Luna in our bed and hope for more than 4 hours of uninterrupted sleep. Hahaha :D I will probably end up posting this tomorrow anyway. I’m so excited for the rest of this month!! We have so many fun activities planned and I love that we are starting all of our own Christmas traditions. There will only be a few more of these monthly posts, as I am not planning on doing them every month after Luna's first birthday. Maybe every quarter or so! I was telling my mother the other day that I had been really bad at filling her baby book up, and then realised that I have been doing these monthly posts, so I guess that fills that requirement! 

Ramblings: Luna Marlena's Seventh Month

This month's photos can be found HERE (the ones of Owen and Luna are courtesy of Gina who took them).

In terms of development this month has been the most active. Every time I turn around Luna is doing something new! I love seeing that expression on her face when she does something that she hasn’t done before, a little worried, a little surprised, a little confused. “How did I do that again?!” I feel like this month has actually been the longest, just because I feel like we have done a lot and accomplished so much too. It’s so amazing to see your little baby grow into a little person with so much personality! She was 19.5 lbs and 26.5 inches at her 6 month check up (big gir!), and has grown out of nearly all her clothes again – which in a way is a good thing as now we can just buy her winter clothes that will fit for a few months.

If you remember back when Luna was 4/5 months old I talked about a “4 month sleep regression” that everyone was talking about? Well no one mentions how big the 6 month growth spurt is! I suppose I should actually feel blessed that Luna never slept through the night as I don’t really miss what may have been. We did find ourselves a little rhythm a while back, but that’s been thrown up in the air these past few weeks. Every time Luna learns to do something new she “practices” in her sleep and wakes herself up. When she was tiny it was when she learnt how to flap her arms and would nearly propel herself out of her bed, then she got into the habit of kicking her legs, then rolling over back to front then front to back and all over the place, and now crawling, sitting up and pulling herself up onto her knees. She has woken me up a few times over the past few days by pulling herself up on me and waiting for my eyes to open. As Cesar said at 5am this morning “How can anyone get mad when they see that beautiful smile”?

The stroller has been semi-permanently put away into a corner as she started to hate it, completely out of the blue. This means that we only use the ergo, which is actually my preference in most instances, apart from when I need to go grocery shopping. I can’t tell you how many times we have been shopping and using the stroller as a shopping cart… While I am carrying Luna in the ergo. I guess it comes to some use at least! I do hope that once we get a winter cover for it she will agree to use it now and again, at least for running errands around Flushing. I can never really predict anything with her as it changes all the time!

So we started Luna on solid food! It’s been about 3 weeks now, and we finally got a high chair too. It’s actually wonderful for when I want to cook, as she just relaxes in the high chair with some chewy toys and watches me! As she’s had a history of being sensitive to certain foods I eat I wanted to make sure we were able to figure out any allergies immediately, so I started up a chart to track what foods have “passed” and what we need to try again another time. Her favourites so far have been avocado, banana, apple and green beans (that one surprised me). She literally spat the first spoonful of sweet potato out at me, and proceeded to have an allergic reaction to it (bright red cheeks that turn into eczema). I just made potato pancakes out of the rest of that and ate it myself… We will try it again next month, and stay off “orange” foods for a few weeks. She hated baby oatmeal too, until I mixed bananas in with it and now she will tolerate it. Squash has been a bit iffy, so I am shelving that one for a few weeks too and we will just try a few others. We will just continue to try different fruits and vegetables for the time being, add yogurt in a while and then just follow her lead. I think we will just keep her diet vegetarian for now… I always thought that I would let her make up her own mind if she wanted to forego meat and fish or not, but I don’t want to introduce it just yet.

At the beginning of last month Luna was rolling around like a pro, and then, all of a sudden, about three weeks ago she got up on her knees and started crawling. At the time she couldn’t really even sit up unassisted for more than 2 seconds, but she was crawling, mainly when Joey the cat was in the vicinity and she needed to chase after his tail. With that came the inevitable push-ups under the table (strange little activity there) and the sudden interest in cables and outlets, so we purchased what I fondly call the “prison”. It’s very large, colourful, takes up most of the space in the living room, is littered with cushions and toys and keeps Luna out of trouble (it’s also an easy way to babyproof for now). She has a love/hate relationship with it… There are moments she will play happily by herself in it, babbling away, and then others when she will whine if someone doesn’t join her in it. Baby prison. Anyway, I digress, so she likes to get up on her hands and knees and rock, and then lurch herself forward into a crawl. Exactly a week after that development I placed her in her prison, on her back, and she rolled over and sat up by herself. She’s still a little rocky, but after a couple of tumbles on her back, she now knows how to break her own falls and props herself up, or just rolls over and crawls. Luna’s friend Owen came over for a play date and showed her how he could pull himself up onto his feet… And the very next day she pulled herself up onto her knees, and now tries to stand (unsuccessfully, but who knows how long that will last…). I actually have a feeling she’s more interested in standing than crawling. She will do everything she wants in her own time, I don’t want to rush her :) It’s all going by too fast as it is!

Luna also met her Great Auntie Louise from England this month! She was in NYC for a week with her best friend, and it was so lovely to see her, and I am so glad she got to meet my daughter. Family is so important to me, even though I have lived so far away from my family for so long, it’s still important to make the most of moments like this. Luna now has her first teddy bear courtesy of my aunt, Beeby Bear (named for my Nana who is no longer with us), who she loves to cuddle. I still have my childhood teddy bear monkey, Bogey, who I hope to give to Luna too. He’s still in great shape despite being in his 30’s!

And the most wonderful part of all this is to see how Luna’s little personality is blossoming in such an amazing way. She gets a little nervous nowadays when I hand her over to someone, needs a little time to get used to them, but she is all smiles and happy gestures most of the time with people. She already liked to entertain and loves to hear us clapping when she does something adorable. The teething part has been very trying on all of us though, I know that they are going to come out at some point, but for the past week she has really been suffering and I hate that. I just want them to come out painlessly!

We’ve been around the East Village and LES quite a few times, visiting friends and old colleagues and work places, around Midtown, around Corona and Flushing, and also to Harlem to Ebedet and Xavier. We celebrated Halloween and the Day of the Dead, and went out to eat quite a few times at our local favourite spots (and Taqueria). Luna is a little charmer and likes to smile and sing whenever we are out, which always makes it a pleasure to take her places, the subway, restaurants and shops. This coming month we will start thinking of Thanksgiving and then Christmas, and also hopefully a visit from my Mum, a real holiday for her, not a working visit. And hopefully we may then even have our first date night! Just a quiet dinner somewhere together for a few hours. Oh, and Interpol later this month! My first show since Spiritualized last year, when I was pregnant but not yet showing. And while Luna is singing to her stacking toy and hitting it on the ground I shall try to post this with some photos. It may take me until tomorrow though :)

(Also: teething really, really sucks).

Ramblings: Luna Marlena's Fifth Month

This month's photo album can be found on my Flickr HERE

Five months already. On the one hand it seems to be flying by, on the other April 9th seems so far away from where we are now. I look back at those pictures taken during the first month and remember how tiny she was, and realize how much she really has grown. She was 16.5 pounds and 25 inches a few weeks ago and she’s definitely grown more than that (we will find out at her 6 month appointment). She’s grown out of 3-6 month size clothes and is wearing 6 month and 6-9 month stuff. She really went from a just under average sized and very short baby to a big, tall 5 month old! We are still exclusively breastfeeding, and every time we try using a bottle she still won’t drink from it. She holds it and chews on it and if she manages to get any milk out of it she spits it out. The same milk that she drinks from my breasts! It’s quite funny really. We will probably start on veggies this time next month, if she is sitting unassisted that is.

I was talking to a friend just yesterday about how there are so many things that you never know about kids until you have one. I had never heard of a 4 month sleep regression until I saw it mentioned on an online parenting message board. Yes, it was hell. And yes, we are through it (and into something new now). Luna has never been a really good sleeper, but by 3 months we had a good system down, usually something like bed at 7pm, 4 hours, nurse, 3 hours, nurse, 3 hours, nurse, 2 hours, awake. She never was a real napper, but she was sleeping better at night, in the swing, but it was working for all of us. And then it started going downhill, waking up every 2 hours and then every hour (pretty much on the dot). We often ended up co-sleeping at the end of the night when I was too tired to get up, but by this point we were co-sleeping most of the night. There was no other way, it was worse than when she was a newborn! At the same time I realised that we might as well do some crib transitioning seeing as she was waking up anyway. I’m so glad we did because the swing lost its magic and she doesn’t like it anymore. I suppose it’s too confining now that she is used to having the space to roll around.

I started putting her in the crib for naps, and then transitioned to night time, and the day the sleep regression ended was the day that she slept in the crib all night (she woke up three times to nurse but slept all in all 12 hours in the crib). Victory!! Right?

Scratch that. She sleeps well in the crib now, but has started waking up because she rolls over constantly. She likes sleeping on her side, which is fine, but now she rolls onto her stomach, and even though it’s normal, it worries me. So we have been co-sleeping again. It’s just easier. She’s in what appears to be a month long growth spurt (more about that shortly), and we all need to sleep. What we need now is a bigger bed, and for this new issue of her not wanting to go to sleep until I do to go away fast (I’ve been writing this since 8pm and it is now 10pm and I finally got her to sleep).

Over the past two weeks she has learnt how to push her feet into her mouth and blow raspberries, and roll over both ways like a pro. I’m so happy we got a rug for the floor because she doesn’t stay on her play mat anymore, but rolls all over the place. She is also very, very intent on sitting up, and can be helped to a sitting position with hardly any help (I just give her my hands and she pulls herself up). She’s not able to sit alone yet though, but that’s not going to be very far away now. It goes so fast. One minute she was screaming about being put down on her tummy, the next she’s voluntarily rolling on her tummy and doing push-ups!

The blowing raspberries part was so funny we ended up making each other laugh for hours! I was holding her on my lap one afternoon when she stuck her tongue out at me and started blowing raspberries. It made us laugh so much that she continued to do it, just for the effect. Luna has this wonderful, hysterical personality that is growing by the day. She is nearly always laughing (even when she is grumpy or crying), she makes us laugh all the time (even when she wakes up after 20 minutes at 2am and just smiles at me), and she knows exactly what sounds to make to tell us that she is bored (usually every 20 minutes) and needs to do something else, or look at something else. She obviously rules this household (even the cat, poor thing, and he always comes back for more). The other day I caught her grabbing poor Joey’s tail and all he did was groan softly and wait for me to save him. And then came right back to see Luna. Silly thing! He’s such a good boy.

We have had 2 play dates this month! We went to Brooklyn to see Gina and Owen (Owen is 3 months older), and then Ebedet came over to Flushing with Xavier (he is just a few weeks older). We also went into the city to meet up with a few old friends. Luna is great to travel with when she is in the Ergo (I still need to figure out how to nurse in it though), but the heat was too much. I’m so happy that it’s been in the 70’s these past few days as we are able to go back out on long walks again! Staying inside all day is not something either of us enjoy that much! It was so cute to see the babies interact with each other, although you have to be careful as they always seem to gravitate towards the other’s hair (that’s part of the reason I cut mine short to be honest!). It’s going to be so cool to watch them become friends! I wonder at what age kids actually start playing with each other? Right now there is a lot of playing alone side by side and curiosity towards the other person. It will be interesting to watch!

I need to discuss the merits of the wonderful jumperoo thing that you hang from the doorframe. My grandmother thought of sending us one and Luna LOVES it. I only put her in it for 10 minutes tops at a time (and only once or twice a day), but she loves to jump and bounce! If I say the words “jumpy jumpy jumpy” she actually gets all excited. I guess it beats lying on the floor and being carried around by your parents all the time!

I think we have now established that I’m not all that keen to be separated from Luna, and I’ve noticed that she has started to show signs of the beginnings of separation anxiety too (although not when someone else holds her). I was used to putting her down on her mat in the morning for a few minutes while I made some breakfast in the kitchen, and she would play happily. Now she starts her angry cry when I leave the room; and smiles when I come back. I think it’s inevitable that it’s going to happen. I might have to start leaving her with Cesar for more than a shower a few days a week, maybe the time of a pedicure or a long walk somewhere. My first solo night out will be in November when I go to see Interpol with Rosie, so I’m going to have to make sure that she will not only take a bottle but will also settle down to sleep without hysterics… Maybe she will all of a sudden become an amazing sleeper by then?! Of course, I think it will just be harder on me than it is on her as she probably won’t even realize I’m gone until I am back.

So much has happened this month! Sleep regressions and rolling and raspberries and laughter and hugs and love. So much love.

Ramblings: Sleep (Or No Sleep)

You know how people tell you to get as much rest as you can before the baby is born as you won’t get any afterwards? I kind of get it now. You can’t stockpile sleep and tap into it at a later date, but you can remember back to the days when you could get hours and hours of uninterrupted sleep with a smile. A good memory. I actually can’t remember the last time I had a real, good 8 hours straight of pure sleep. I WISH I could have rested properly during those last weeks of pregnancy! But I was literally up every few hours to pee or because I was thirsty, my heartburn was absolutely horrible, and it was really, really hard to find a comfortable position to sleep in! But now I wish I had just stayed in bed during that 41st week, with books and magazines and snacks at hand, forcing myself into such a relaxed state that I had nothing else to do but close my eyes and REST.

I’ve never been a good sleeper. Or I can’t remember when I was. I’ve always been one to sleep late and wake up early naturally and not be able to go back to sleep again. For years I was able to go out at night and go to work in the morning and be a productive as I needed to be. Years and years ago when I spent a year in Israel I would party all night with the other volunteers and kibbutzniks, go to sleep around 5 or 6 and be up around 9 unable to go back to sleep again. And don’t even talk to me about naps. What are they? I can count the number of naps that I’ve successfully had during my teenage and adult years on one hand. I’ve never really felt sleep deprived though (apart from those times that I was really burning the candle too hard on both ends – but that was easily remedied with a couple of “normal” nights of sleep).

You know how they tell you to rest after you have given birth and you are in hospital? Well that’s just pure BS. I was woken up all through the night by doctors and nurses coming to check on the baby and me. Next time I am going to give birth in a birthing center where I can go home with my baby within hours after the birth. It will be possible to get a little bit more sleep at home without all of the interruptions. Seriously doctors? Do you HAVE to do your rounds at 5am, just after the baby has gone back to sleep and we are about to slip into a slumber? Does my temperature really need to be taken every 2 hours?!

The first few weeks after the baby is born is the hardest in relation to sleep deprivation. I was prepared for it in a sense, but not prepared for literally being awake 23 hours out of 24 every single day. They tell you to sleep when the baby sleeps, right? Well that is absolutely fine when you are a person who is able to sleep on demand, fall asleep when you tell yourself to. It doesn’t work when you are like me and need about 20 minutes to be able to put you to sleep. During those first few weeks if you are breastfeeding you are supposed to feed your baby every 2 hours. Not 2 hours after the last feeding, but 2 hours after the feeding starts. I guess I was lucky in the way that I never had to wake myself up to do it as either I would be awake anyway or Luna would wake me! And of course, once she was asleep there were always so many things that I wanted to do, especially shower or get something to eat that was actually cooked and not just a (unhealthy) snack.

You know what? You get used to it. It’s amazing what the body can do when necessary. It’s amazing that you are able to function on a couple of hours interrupted sleep, look after your baby, do laundry, shop for groceries, cook dinner, respond to phone calls and emails. And it does get better… Somewhat. Until you hit a sleep regression at 4 months when it all goes back downhill again. Our better was 4/5 hours-3 hours – 2 hours – 2 hours. Of course the longest stretch would happen in the evening, not when I was asleep. And we only got this because I resigned to letting Luna sleep in the swing. She hated the bassinet. She hated the swaddle. She spits a pacifier out. Luna loved, and still loves, to be held, cuddled, to nurse, and now to jump around in her door bouncer. She dislikes napping, being asked to go back to sleep when she wakes up wide awake and not being in our arms. You adapt, so we did. A baby needs sleep and so do the parents, so you do what you need to to get this sleep. If it’s the swing, then so be it. If it’s cosleeping, then so be it. I actually felt like we were all getting some sleep and it was great.

Then we hit the 4 month sleep regression. You know how bad it was when your child was a newborn? Well this is worse. Only you expected it when she was a newborn. It was also worse because she was literally waking up every hour, all night, and wouldn’t nap during the day. Granted I have a fussy child who literally resists sleep all the time, but this was out of control. From what I have read, around 4 months a baby’s sleep pattern changes into a more mature sleep pattern, like our own that we have now. However, when we wake up in the night we just turn over and go back to sleep again – a baby doesn’t know how to do that yet. So they wake up. It lasted all in all about 3 weeks from start to finish and I feel like it is finally getting better again. The only issue is that now the swing isn’t cutting it anymore. We are slowly getting there with the crib, a little bit longer every night and all naps, but the only way we all get some real sleep is when we sleep in the same bed. And the full size bed that is just fine for Cesar and me is now not big enough. Thankfully we now have a big room with more than enough space for a queen sized bed, so once we can afford one, it will be our next big purchase. One thing I am grateful for being in Flushing is that the rents here are still affordable and we have a big one bedroom apartment.

Also, Luna is one of those children who seems to be going through one continuous growth spurt, and when she is learning something new really doesn’t like to sleep. I don’t think I will get a real night’s sleep for a few more years yet… Right now I am just aiming and hoping for a schedule along the lines of 7:30pm – 7 or 8am sleep with night time feedings at 11:30 pm and 4am. And three one hour naps during the day. Not too much to ask for, right?!

I’m typing this at 10am, while my boyfriend and child are both sleeping peacefully. Why am I not taking advantage of this and napping myself? Because I know I won’t be able to. I’d therefore rather spend this time doing something productive, instead of tossing and turning for 20 minutes and getting frustrated when nothing happens.

And you know what? It’s all worth it. This is what we signed up for. And I firmly believe that as Luna is a fussy infant who wants to stay close to her mummy and daddy all the time she will be a calm and peaceful toddler, right? ;) And as much as it can be tiring to get up over and over again during the night, there really is nothing like holding your baby in those wee hours, in the silence, and reflecting on how amazing your life has become.

Ramblings: A Memory that Never Fades

Before I even start with this I have to warn anyone who is reading it that it is extremely personal and not easy to read. It’s been 26 years now, and although the pain does lessen, it never really gets any easier. That said, if you do read this and you didn’t already know the story, I am not writing this for sympathy, it took me a long time to get past it without feeling anger and sadness and incomprehension, but once I did my life took a better turn. I’m writing this as a perspective on what drives someone to do something that many of us don’t understand. All of the below is personal, all of my thoughts based on personal thoughts and feelings. In no shape or form do I want to start a discussion on whether this is right or wrong.

There have been too many deaths over the past couple of years, some that have stabbed me full on in the heart as they have been untimely deaths of friends, and others that have chipped away at my heart, maybe because they were friends of friends, or because they were a public figure that I loved and/or respected. Death is obviously part of life but that never makes it any easier. The knowledge that it is inevitable doesn’t make the pain any less, and we all want our loved ones to live forever, or at least as long as possible. And now that I am a mother it makes me even sadder to think that my daughter will never know these people that I loved. It makes me so sad to think that she will never have a grandfather who will take her to the seaside and make her a rocking horse from scratch. I can’t even imagine how my mother felt when she had to tell her two little daughters that their father died, as much as I can’t imagine how his girlfriend felt the moment she found him, as much as I can’t imagine how Robin Williams’ family felt when they discovered he was dead, and then saw it blasted all over the media for everyone to comment on. I bring these two people together, my father and Robin Williams, as they both died in exactly the same way. As much as it is devastating and heartbreaking and completely life changing to all of those affected by it, suicide is by no means selfish or cowardly. I will come to my reasons why shortly.

Depression is a tough topic. If you are lucky enough to never have suffered from it then you cannot understand it. I don’t mean that in any way except for that is what it is, in the same way as a person who has never broken a bone cannot understand how it feels to have a broken bone. You can imagine it, but you cannot understand it. There are so many ways that people try to deal with depression (often depression or another similar mental illness goes undiagnosed), from self-medication (alcohol, drugs), prescribed medication (anti-depressants, anti-anxiety pills), therapy (in all of its forms), life changes, to the last resort, suicide. Even then suicide may be a cry for help, but it can also be the real end to something that someone deems unfixable. Basically, the thought that there is nothing else to live for, and that it would be better to be dead than alive. Depression is a debilitating illness, and there is not one fail safe cure, just because it manifests itself in everyone differently and there is not a perfect one cure solves all. You may not even feel it creeping up on you until it’s too late. Or it may only hit you once in your life. Sometimes addiction causes depression, and sometimes depression causes addiction (it’s often hard to know which one is the chicken and which one is the egg in this case), but they both go hand in hand. I know they did for my father, and I know that I have been prone to be a complete mess when my life has been on the grey side. I would go through periods of acute drinking followed by long periods of sobriety where I would learn how to live with myself and my demons and then fall back into drinking again. Nowadays I am sober and doubt that I will ever be a drinker again, because I am not only responsible for myself anymore. I have a child who will see me as one of the two most important people in her life and I need to be the best person I can for her. I always considered my darker moments to be because there was something not quite right in my life, and by working out what was creating these feelings of sadness and removing them from my life I always felt better (a job, a person, a problem etc). I never felt so depressed that there was no way out (apart from the time that I felt completely trapped in a job I had grown to hate), and I always knew that there was a light at the end of the tunnel. My therapy is writing, my depression is feeling trapped and my cure is freeing myself from what is trapping me. I have pages and pages of words that I will probably never publish or even reread. But they are as important as they were cathartic. Sometimes I would imagine what it would be like to end it all, but only as a question on what it would be like afterwards, rather than an end. Suicide was never an option for me. However, I DO understand when people feel that it is their only way out. In my worst moments of darkness my ideal way out would have been to disappear and be myself in another country or city, not letting anyone know where I had gone. By saying that I understand it, doesn’t mean I accept it though.

I still miss my dad. I am happy that I have a wonderful memory and have many a moment stamped in indelible ink in my brain. Those cherry red Doc Martens and his long black beard. The huge Mohawk and the dark glasses. My eyes that are his. The passion for literature and music and the immense love he had for my sister and me. And while I know full well that he wasn’t always a good person, and that he had many a demon torturing him, I keep my image of him in my heart. And while I will never know how bad it was that he had to end his life, I finally came to terms with it a few years ago. While I have always chosen to find a different way out, this was his way out. Why was it not selfish? Because he most likely thought that he could not bring any more happiness to anyone in his life anymore. That he was becoming a burden, that he had nothing more to give. Why was it not cowardly? Because he didn’t choose to NOT face/fix whatever was wrong in his life by killing himself, no, he must have felt that there was nothing else left to do. It wasn’t a cry for help, it was a last resort.

And that’s the whole thing. As much as it hurts to have to say goodbye to someone because they chose to end everything, they did it because of a reason that maybe they carried with them to the grave. And we should respect them for that. That doesn’t mean that we cannot grieve, be angry, be sad, spend years trying to understand why, but we should respect this death as we would any other. I’m still angry at my father, just because I had to grow up without a dad, and my daughter will grow up without a grandfather, but I know now that there was nothing I, or anyone else, could have done.

And so, therefore, as much as Robin Williams’ death may have shocked us all, we must remember that he had his own reasons for this, may it be because of depression, because of Parkinson’s disease, or because of something else, and we must respect that. For his family who have to grieve in the public eye amongst the sympathetic and the downright vile. We should remember him for the wonderful person and actor that he was, and for how much he was a father figure to many of us, not for the way he died.

And yes, we should maybe take his death as an opportunity to open up the discussion on mental illness and depression and addiction. To start to remove the still existing stigmas created by these illnesses and create a path for people to find the type of help that works for them. Show people that there are different ways out, or at least give them the option to find out if they can be helped. Also, maybe create easily accessible help groups for those who have lost a loved one to suicide. I know I really could have benefited from something like that, somewhere where I could have met other people who were going through the same thing as I was. It wasn’t until I was in my late teens that I met someone else who had lost a very close friend to suicide, and I finally felt that all my muddled feelings were mutual and understood. I wasn’t alone in having to deal with this anymore. People don’t like to talk about suicide. I still avoid answering the question of how my father died, but nowadays it’s mainly because I don’t want people to feel sorry for me, not because of the stigma it held. Actually, come to think of it, it’s because I don’t want to make others uncomfortable. It’s easier to talk about my father’s drug problem, as I suppose it is more acceptable than suicide. Then again, do I want suicide to be “acceptable”? Not really. I just want something there as a safety buffer people can rely on, a hand that tells them that there are other answers. I just want there to be less of a stigma on those who decide to end their lives. It’s time to stop judging someone for what may have felt like their only option.

As much as I know that I could not have changed my father’s mind, a part of me will always wish that I had been there to give him my hand and to pull him out of the hole. And then part of me knows that he is always here, and if Luna can’t see him, at least he can see her.

And even though my daughter will never know her grandfather in person, I will make sure that she knows who he was.