Mother's Day

On Mother's Day this year, I cried. 

It is Williams Syndrome Awareness month, and I've been trying hard to do my part in raising awareness, in sharing facts about this genetic condition mostly via Facebook and Twitter. A bunch of friends and wonderful women here in Karlsruhe even got together to organize a Flea Market sale in order to raise money and awareness for the WSA in the United Stated. 

Yeap, I've been giving it my all. Embracing my son's condition. Ploughing through, whether I felt like it or not. But you know what guys? The truth is, given the choice, I still wouldn't wish this on him. I wouldn't wish this on us. Or on anyone. 

Because being a mum is hard enough. But being a mum of a child with special needs, a child who's developmentally delayed in every area, a child who doesn't 'get it', is bloody, bloody hard. So hard that there are moments, brief moments in time where I want to walk away from my life and into a new one. One without doctors, therapies, heart surgeries and constant fear and worry. One where I'm not constantly hurt by the sight of normal children my son's age who's already walking, pointing, communicating, playing with other children, while my baby sits on the sideline lost in his own world.

Some days are so hard that it leaves me wondering whether I am able to have another child. Not physically, but mentally and emotionally. I have always wanted two children. And now more than ever, I think it will be good for Liam, for us. It'll take the focus off of him. He'll have a partner in crime for life. He'll have someone looking out for him, who loves him unconditionally. He'll have someone to emulate, to play with, to learn from, to motivate him to do things that don't come naturally to him. 

And as strange as this may sound, I don't want to miss out on the experience of having a 'typically' developing child. Having Liam is all I know motherhood to be. His needs come before mine. And he has a lot of needs. But a part of me can't help but wonder what it would be like to be a mother to a child who smiles easily, laughs quickly, communicates and grows according to age. And selfishly, I don't want to miss out on that. 

But the truth of the matter is that we're more or less alone here and we need to be in Karlsruhe, Germany, right now and perhaps for the next few years. Liam needs the medical care here. How will I cope with another child? The closest family we have lives four hours away. What will I do with a newborn baby when I have to take Liam to therapy? How will I deal when a baby's piercing cry sets Liam off because of his sensitivity to certain sounds? How do I do this without any help, and with limited financial resources to hire even part-time help? Will I hurt even more if/when a much younger sibling is able to do more than Liam can and surpasses him developmentally?  And deep, deep down inside, another voice asks, what if this other child is special needs too?

And yet, despite everything, I love my son so hard, so fiercely, so DAMN MUCH, that I know if he was all I could have, with all his problems and needs, with all the hurt and pain, I wouldn't change it. He is my heart and soul and I live for the smile that so rarely lights up his face, and the even rarer sound of his laugh. I live for the feel of his head resting on my chest. For his peaceful breathing when he's asleep. For the way he looks at me whenever I sneeze or cough as if to ask me if I'm okay. He can't talk, but he says so much through his eyes, his touch, his face, and I would give him the world and all of me, and yes, a sibling too - when it comes down to that - because I am his Mother. I have that honor.  

There are so many uncertainties in life, and that's the only certainty I know. And I know no matter what happens, we'll deal with it, we always do. Even when I'm 'this close' to falling apart, I somehow find the will to go on. It's human nature. We fight for our lives. We fight to survive. 

Some days though, I just wish this act of living wasn't always so hard. I wish we were living in a place we love, surrounded by family and friends we can count on no matter what. I long for the ocean daily. I wish I wasn't so afraid of the future. I never used to be. 

And so, this Mother's Day, I cried.

May is Williams Syndrome Awareness month!

Today marks the start of Williams Syndrome Awareness month, and I'd like to start by sharing a link to this beautifully-made video on the Williams Syndrome Association page here.

It is only a 10-minute video, so do take the time to watch it if you don't already know what Williams Syndrome is. And if you do, it is still a wonderful introduction to the rare, unique, daunting and challenging condition that Liam, and so many other children and adults, live with on a daily basis - yet remains largely unheard of and unknown in our society.

I'll also be sharing random facts here from the Williams Syndrome Association throughout the month, and I hope you don't mind. Please feel free to link to my blog or share it on. The more support/presence we have throughout the world, the more can be done in terms of research, education, intervention, and perhaps one day, even a cure.

Once again, thank you for being on Liam's team. He has Williams Syndrome. We know that now.

But above all, he is my son. And he is what love means to me.

Much ado about nothing

I haven't felt much like writing lately. Liam caught a bad cold last week and was really sick for most of the weekend, leaving The Husband and I in complete exhaustion as we took turns caring for him, force-feeding him medication, settling him to sleep for most of four days/nights and nursing him back to health. It wasn't the best of times and I'm thankful he's better now. Taking care of a sick baby is really, really hard.

I'm still recovering from the lack of sleep and non-existent weekend, and feel my body perpetually on the edge of shutting down with daily headaches, muscle aches and so forth. Or maybe I'm just getting old. I feel like I could sleep for 24-hours given the opportunity.

Nevertheless, the sun has been shining brightly for a few days now, which really helps to lighten my mood and spirit. Liam and I have had some pleasant days in our garden, lying on the mat and doing nothing much. Well, I do nothing much while he tries to stuff leaves in his mouth that inevitably makes him gag and vomit.

I used to think that winter was my favorite season (I have fond memories of winter during my years living in Michigan), but since living in Germany, I think I've changed my mind. Nothing, and I mean nothing, beats a warm, sunny day where you can walk out without bundling your child up in a million layers, wearing only a tank top, shorts and jandals yourself and feeling the warm sunshine on your skin.

Everyone is friendlier and more cheerful, and I love walking around the city looking at people sitting at the courtyards of cafes and restaurants drinking their wine and looking like they've come back to life. Myself included.

Liam's therapies continues, and we love seeing little improvements each day. He's now taking homemade pureed food, and he seems to love his daddy's mash potatoes with pureed peas the best. I'm also giving him a lot of avocado and salmon for the good, healthy fats, which he takes really well especially when smuggled into the mash potatoes, and really any pureed fruits.

This baby is going to finally hit 8kg by next month if I have to shove food in his mouth every hour! Okay, I'm only kidding. The truth is, aside from the fact that he still can't chew/eat finger food, Liam's eating really well and I'm so proud of him. It's a good thing too, as his recent blood test came back with high calcium levels (hypercalcemia is a typical occurrence for children with WS), which means we have to cut drastically back on milk, which was his main source of nutrients only two months ago.

In other news, I've also started working on a writing project that's really just for me, which may take some time away from this blog. I don't know where that project will end up, or how long it will take me to complete, but in the meantime I'll continue blogging when and where inspiration strikes. I know you're all constantly on the edge of your seat waiting to read my next words, after all. =)

Next month is Williams Syndrome Awareness month, and a few of my expat friends here in Karlsruhe have come together and will be organizing a flea market sale with their donated items on one of the weekends in May. We'll be handing out brochures to increase awareness and all the proceeds will go to the William Syndrome Assocation (WSA) in the United States - a community that has been such a source of information, strength and support for me and my family.

If you'd like to show your support with a donation directly to the WSA, you can do so via their website. If you'd like to donate to Liam's savings fund instead, you can still do so via the tab on the sidebar or click here. For those who are curious, your donations have already bought Liam a custom-made therapy cushion for us to do physiotherapy with him daily at home.

Other items that may eventually be needed or are helpful for children with WS include sensory items like weighted blankets, vests, custom-made shoes to help with walking, learning tools like special pads and programs to help with reading and writing, special intervention programs such as music therapy in future that may not be covered by the State or insurance, or perhaps even a guide/aid dog for a child who does not understand danger or may be prone to wandering. So every bit you can contribute helps.

And to sum it all up, here's a picture of Liam looking super-cool in his new sunnies sitting in our garden. Thank you for being on Liam's team!

These are the days we're made of

Most people are so incredibly supportive and understanding whenever I write about difficult things on the blog, and I really appreciate that. But today I also wanted to make clear that writing about certain issues, especially when it comes to Liam and Williams Syndrome, is simply a way for me to deal with it, an outlet to weigh my often complex thoughts and emotions in words, but it is in no way a sum of my life or how I feel as a whole, everyday.

Yes, there are many difficult moments. And I talk about them here because I want other mothers out there who are in the same boat to know they're not alone. So many of us avoid talking about the hard stuff. We don't like being angry, vulnerable, frighten, or lost, in front of others. We're afraid of being judged. Afraid of what people would think of us. And I am too. 

But I've made a conscious effort to be honest. To reach out through this blog. To help people understand how it feels to be a mum to a special needs child, all the good, bad, wonderful and ugly that comes with it. I want to know I'm not alone, and I want others to feel the same way. And all the responses and comments I've received via the blog, Facebook or emails so far tells me that being open and direct throughout this journey have been helpful to others. 

And so I'll continue to address the difficulties and challenges surrounding Liam's diagnosis and what it means for us as a family, but please understand that they certainly don't sum up everything I feel. For every bad day you read about, there are probably five good days you don't - because good days tend to be simple, ordinary days where nothing much happens, which is good for me - but does not necessarily equate to a very interesting blog post!

Nevertheless, I want to be more objective, and portray a more balanced picture of our lives here, as for the large part, we are just like any other expat family, trying to build a home for ourselves in a foreign place and praying everyday for the sun to shine, both literally and figuratively. 

In other news, Liam is getting so more enjoyable each day as he grows bigger. He doesn't say much, but through his grunts and groans and smiles and squeals of excitement, he's really starting to communicate his wants and needs and feelings. 

His personality is really starting to show. And he is silly, it seems. He loves attention and he loves being spoken to. He also loves exploring, and every now and then I find him doing something like this... 

Is that a shoe hanging from my mouth?

And this...

I've heard Yoga is good for your health

He is inquisitive and curious...

Dancing water's so much fun to watch!

I wonder what's in mummy's book

And also serious and focused...

That pink muppet sure has crazy hair

But most of all, he's a bundle of fun. And he makes me laugh everyday. Even if I was just crying. 

Go faster, reindeer!

Sitting on the swing with daddy is the best

The Husband and I still creep into his bedroom every night when he is sleeping, just to watch him sleep, and there is no better feeling than seeing your child safe, happy, contented and fast asleep in his cot.

We are adjusting to our roles as parents, while still trying to make time for each other, and for ourselves. It is not always an easy juggle, but we're doing so much better now than we were half a year ago. 

The Husband's taken up bike riding again, and I'm slowly making friends and meeting people here who are already becoming really special to me. And with the sun starting to shine again, we're looking forward to many more trips and outings outside, to exploring our surroundings, having picnics in the park with other families, visiting vineyards, long walks by the river, and many, many barbecues in our backyard. 

Just as winter's turned into spring, and bright, yellow daffodils seem to be springing up all around me, most days are made up of moments, the ordinary and the unexpected. And these moments make up who we are. And just like that, our unexpected, beautiful, crazy life goes on.

I *heart* Boden

I'm not into fashion the way some girls are. My closet is really small (and yet manages to hold all my clothes for summer through winter, so you can only imagine how little clothes I have), I own enough shoes to get through the seasons, about three handbags, a handful of accessories (mostly given as presents), one lipstick I never wear, and one bottle of perfume. I've never had a manicure/pedicure, hardly paint my nails, hate going to the hairdresser or for a facial (I make an exception for massages!), and don't wear any makeup on a day to day basis unless I'm going out to dinner, which is a rare occasion. 

So no, I'm not very girly at all. But don't get me wrong. I love clothes. I will spend money on good quality, classic, timeless pieces that will (and do) last me for years. I like dressing well and looking good. But I do not like spending the time some ladies will put in to achieve that state of perfection, and I really do not like shopping for clothes. I don't like the act of going into shops, perusing, trying on stuff, putting it back, and etc. And since having Liam, I dislike it all even more! Thank god for online shopping or I would not have anything to wear since I don't fit into most of my pre-pregnancy clothes and I can't live in sweaters and jeans forever, especially now that winter is over (I say that while crossing my fingers).

And so, it is with my desperation for post-baby clothes coupled with my lack of desire to go to the mall that I discovered a brand called Boden since our move to Germany, which I LOVE. The website is easy to navigate and user friendly, the customer service is excellent, and the clothes are simply wonderful, with interesting, beautiful designs and of really good quality. I have spent hours adding items onto my shopping cart, only to wistfully delete them all at the end of the day. 

Padded Jersey Jacket, perfect for the transition from a long winter to a crisp, spring day

I normally go through the UK website as my German is not good enough to navigate the Deutschland one, but you can simply change the country flag at the top of the page to shop from the site you want. They have menswear, womenswear, childrenswear and a baby range too. So imagine my utter happiness when the kind people at Boden offered to send Liam some Boden clothes to feature on the blog. Erm, was I interested? Of course! I already love their stuff and although I'd never bought from the baby range, I was interested to see if it was as good as it looked.

Liam wearing one of the twin pack cotton jersey romper 

Love this whale design from the twin pack rompers!

I wasn't disappointed at all. The baby range from Boden is perhaps a little more expensive than your typical baby wear (though really not that much more), but the fabric feels top-notch and not flimsy the way some children's clothes are, the fasteners and snaps are solid, and the shape and colour hold up well even after multiple washes. The designs are fresh, unique and really cute too. I mean, look at Liam in that whale romper! The blue padded jacket was great too, perfect for the current winter/spring days, and so, so soft I could roll it up into a pillow and sleep on it.

There are so many other items I like on the website, too many to feature here, and not just for Liam, but for me and my husband too! Unfortunately I'm a little too old for whale rompers, but after seeing how cute Liam looked in his outfits, I couldn't resist and went online to buy myself a couple of summer dresses too. A good lookin' baby needs a good lookin' mama by his side after all (yes, I'll keep telling myself that). 

Anyway, if you're like me and more into online shopping than actual shopping, go check out Boden today, you won't regret it! And if you have other sites to recommend where I can browse for clothes in the comfort of my own living room with a glass of wine in my hand, do let me know. 

*** 

BUT that's not all. For one lucky reader out there, here a chance for you to WIN a Boden Twin Pack Romper for girls - aged 6-12 months. Click here to see what it looks like. Even if you don't have a baby girl that age, this sweet romper set will make a great gift for any expectant mothers welcoming a little girly girl into their lives.

All you have to do is 1) follow my blog, either through the Followers button, or join as an email subscriber - both found on the sidebar. Then 2) leave a comment on this post. I'll choose a winner from the comments using a number generator on the 30th of April. This giveaway is available to readers all over the world. Good luck!

#Update: For some reason it looks like the comment function isn't working for everyone. If your comments aren't showing, please email me at jolene.sojourn@gmail.com. I will take note of your name and enter it in the giveaway too. Thanks!

The not-so-good-days

We've fallen into a bit of a routine, Liam and I. He now goes for weekly Logopedic sessions and have finally started on Physiotherapy after a few bumps in the road. We've also found a new pediatrician for him whom we really like, so that battle is over as well. It seems, things are finally falling into place for us. I should be happy.

But the truth is, I'm not. Relieved, most certainly. It's good to know we're finally getting things sorted and getting Liam the care he needs. There are still many things to sort through like a place in a KITA (German daycare) for him some time in the future, applying for disability aids, getting myself into a language school and etc., but for now, we can all breathe a little easier. But I haven't been happy.

Lately, it's been hard for me to be around other children. I didn't really want to write about that here, because I know a lot of the people who know me and read my blog HAVE children. But I've always tried to be honest here. This blog, at the core of it, is for me to write about how I feel and to share my experiences - the good, the bad, and the ugly - whether or not anyone else likes it. And even though I'm a little ashamed of how I'm feeling at the moment, it is as real and painful as the fact that winter in Germany doesn't seem to want to budge for spring.

But I digress. Yes, it's been hard for me to be around other people's children. It's hard for me to read about them, see posts from proud parents on Facebook, or be near them, without feeling an insidious jealousy, a pain deep within my soul, and a fierce protection for my son. It's especially harder being around children Liam's age. Children his age and even younger than him who have way surpassed him physically and developmentally. Who are crawling, walking, playing by themselves in playgrounds, eating finger foods, playing with each other. I see them, and I feel so, so hurt.

And even though I love some of these kids, most of whom are children of good, good people whom I've come to know and care about, I've had to distance myself. Because somedays it's so hard not to feel the unfairness of it all. It's so hard to see these healthy, normal children, and not want to take Liam and hide in a cave somewhere so no one would ever comment on how small he is for his age. On why he's still eating purees like a 6-month-old. On why he cries whenever another child squeals in joy because he can't stand the pitch of their voices, that it makes it really stressful for me to have him around other kids. So no one can ever say anything mean or insensitive that would hurt him.

I want to protect him from the inevitable looks of curiosity from adults and kids alike. Not because I'm ashamed of him. Far from it. I'm prouder of my son than I've been of anyone in my life. But because somedays my heart truly breaks for Liam over and over. While other kids are going to the zoo and playground and meeting their little friends for play-dates, he is in therapy crying while his limbs are being worked from head to toe. He's fine being carried by anyone, but he hates his body being manipulated by anyone other than his father and me, which makes every session an ordeal, because that is precisely what they need to do.

And as much as I want to pretend it doesn't change our lives, that he can still have fun and a wonderful childhood, I'm already looking at him differently. Wondering how I can incorporate the exercises I'm supposed to do at home. Finding opportunities for desensitizing his facial area. Arranging his limbs just so, to help him to get from a sitting to crawling position. Already I'm half mum, half doctor, half therapist. And you know what? I hate it. I really do. I just want to be mum. I just want to enjoy my baby. I want to play with him without thinking about what to do to help his legs get stronger. I want to be able to plan our trip to Malaysia this year without waiting for his next cardiologist appointment to see if he may be scheduled for heart surgery instead.

They say the rule of thumb for a WS child is to divide their physical age in half to get their approximate developmental age. This is how you help them as they grow, and it acts as a general guideline for a parent to understand when their child will be ready to walk, speak, write, be potty trained, eat solids and etc.

This means Liam is now approximately a 6-month-old in his physical, mental and behavioral development. This difference is not quite so apparent now when he's still so small. But it will become more distinct when he grows older. When he's a three-year-old and still not walking because his body is more like a one-year-old, when he's five and still not talking because mentally he's two-and-a-half, when he's ten and only just learning to read and write, will he have friends to play with? Will he be cast aside because he's 'weird' in other children's' eyes?

I know I shouldn't worry about this right now. But I do. I don't care what anyone says about him, or how they look at him. But I care, oh I care so much, about him getting hurt. Not having any friends. Not being noticed. Never fitting in.

Everyone keeps telling me different is good. That it's okay to be different. That he's special. He's beautiful. And I know he is. Even now, even with all this, I wouldn't change who he is for the world. But I'm also realistic. And kids can be mean. Grown-ups too. Not everyone is going to look at him and think, what a wonderful boy. Not everyone will give him that chance.

And some days that is really hard to accept. Some days I look at other children and wish my child didn't have to be the 'different' one. Because different isn't necessarily bad. Of course not. Life would be incredibly mundane if we were all born the same, with the same abilities, same talents, same skills. But being 'different' can hurt like a bitch. And it does make life so, so much harder. And that is my truth.

These are the not-so-good days.

What we've been eating

The one thing that really bugs me about not living in larger, metropolitan cities like Kuala Lumpur and even Auckland, is the lack of diversity when it comes to food. 

Now don't get me wrong, German food is pretty fantastic. No one does meat, sausages and potatoes like the Germans. But one can only do a certain amount of meat, sausages and potatoes before starting to crave other cuisine with spicier flavors, more intriguing ingredients, more variety. 

In Karlsruhe, German and Italian restaurants dominate, followed closely by 'Asian' (a bunch of cheap, takeaway-type places that mixes Chinese, Vietnamese and Thai cuisine all-in-one, cooked to suit the Western palate and labelled Asian cuisine), and a smattering of Indian restaurants. 

Being born and raised in Kuala Lumpur, THE food capital of the world (in my opinion anyway), what Karlsruhe has to offer is simply inadequate to satisfy my tastebuds on any given day. Yes, my previous life as a restaurant reviewer/food writer probably has a lot to say for this too. 

But the fact of the matter is that I need my spicy Malaysian food, my mother's Chinese cooking, the plentiful Korean, Japanese, Indian offerings, the sinfully delicious street food, the posh Spanish, Italian and French restaurants, the Mediterranean flavours, to make my life complete. You can find nearly any kind of food to suit any palate in Malaysia, and Karlsruhe doesn't even cover a smidgen of what Kuala Lumpur offers in culinary delights, which is an endlessly frustrating fact - especially knowing that we have to live here for awhile. 

And so, The Husband and I talk about the food we miss all the time. On the one hand, it's great to have someone who knows exactly what I'm missing from home, and who feels the same way. On the other hand, it really doesn't help, when we wake up on a Sunday morning and the only thing we both feel like having is a scrumptious yum char meal with some Shanghainese dumplings, but have to settle for eggs and bacon instead. 

So anyway, finding ways to satisfy our palate is the one thing The Husband and I both strive for at the moment. We've always loved cooking, we love eating, and we love dining out. We can't do so much of the latter now that we have a little man who goes to bed at 6pm (plus there are really few dine out options around here that we'd pay money for), but we can certainly do the former, and in some ways, it's more a need than anything else. If Mohammed can't go to the mountain, the mountain must come to Mohammed and all that...

So we've been cooking A LOT since we've been living here, AND trying to find ways to be creative with our food. It's not nearly enough because neither of us know much about Asian cooking, which is what we miss the most. Plus it's really hard to find some of the spices/ingredients needed to make certain dishes in a small city like Karlsruhe. But I can make a decent enough curry to satisfy my need for spice, a few staple Chinese dishes to have with rice, and The Husband is a whizz when it comes to cooking Western food. It doesn't take the place of having nasi lemak, char kuey teow, bibimbap, roti canai, a fine plate of salted-egg mantis prawns, clay pot tofu, bah kut teh, or a scrumptious Japanese buffet at the Hilton Hotel (yes, I'm dreaming now), but it's the best we can do given our options.

Together, we're a team in the kitchen, and this is how we will get by until we make our yearly visit to Malaysia and gorge ourselves silly on food at the end of this year. I'm already compiling a list of all the things we have to eat. Whether or not we'll have the time to eat them all is another matter altogether.  

And for all you nosy parkers (yes, mum, I'm talking about you), here're some of meals we've been having the past few weeks. Just because.

Pea and Ham soup

Homemade crumbed chicken tenders with salad and parmesan cheese

Fresh sashimi, battered shrimp, grilled mushrooms and salad

Malaysian-styled Laksa

Asian-inspired salmon with miso soup

Spaghetti with shrimp, pesto and chili flakes