Adventure me

Sometimes you have a day that makes you feel alive again.  One of those days that reminds you that you are not just a Mum, not just a Carer....that you are in fact, yourself.  An individual.  A person that has always loved adventure.  I had almost forgotten.

When I was in Year 12 I went on a tall ship waaaaay off the coast of Bundaberg where land couldn't be seen.  I spent the day jumping off the front of an enormous tall ship, landing in the freezing cold and extremely deep open ocean and then quickly grasping for a thick rope before the ship sailed on by me.  It was exhilarating!

For around 3 or 4 years during university, I was part of the Sea Turtle Research team at Mon Repo and I spent 2 weeks over Christmas walking around and around a teeny tiny Wreck Island, tagging sea turtles.

I spent 2 years trapping and researching Playtpus on the Gold Coast and doing LOTS of camping.

When Steven and I were married we went to Hawaii for our Honeymoon and spent 2 weeks Boogie Boarding at Bonsai Pipeline, walking over to volcanoes, climbing waterfalls and trekking alongside 300m drop offs, and exploring lava tubes.

I've been snorkeling on the Great Barrier Reef, snowboarding at Thredbo.......

This is who I am!  This fun and adventurous person.  It's sometimes difficult to remember that.

Today we spent the day Abseiling and Caving in Bungonia National Park!!!  I'M BACK BABY!!!  It was such a fabulous and exciting day with a great bunch of friends.  I was relaxed and happy and having fun.....I WASN'T worrying about work, about whether that person had emailed the information yet, packing for Bali, cleaning the house, cooking next week's snack foods and meals....BLAH BLAH BLAH.  Don't get me wrong....I do all of those things because I choose to.  But all work and no play makes Lissy VERY uptight and lost.  Today was fabulous and Steven and I have both agreed that we want to go again....on a much BIGGER cliff!!  Maybe Canyoning could be on the cards too.... :)

Bali Bound

Next week we are off (the whole family) on our first ever international holiday since Ayla was born.  It's a super exciting time for all of us....but I can't believe just how much preparation is needed to travel with a child!  Last time we went, we packed the night before but this time around it feels like I have been mentally packing for a month.

I think the most daunting aspect of this holiday is that Travel Insurance for Ayla just isn't going to happen.  And I believe that because she has a pre-existing condition.....if her pre-existing condition impacts on our trip (in other words - stops us from going or brings us home early), it is at our expense.  Not to mention the little niggly worry of hospitable costs if they are required whilst we are away.

And yes these are very real concerns and possibilities but I just can't bring myself to have the entire family living in a protective bubble because of what if's.  We all have to live and experience the joys around us.  Hell, there's risk in crossing the road and I do that several times per day.

So Bali here we come.......

If I can work out how to share photos to the blog whilst away....I will....but don't hold your breath :). It might have to wait until we come back.

Oh and a travel tip for everyone travelling with young kids.... hit Little Gullivers.  These guys have made our trip so much easier!

7 Things You May Not Know About a Special Needs Parent

There are some days that my feelings can flow right out of me, through my fingers and onto this 'virtual' page.  And other days, they just can't.....and then some days, I'm so exhausted that I'm not sure if they can or they can't.  Today is one of those last days.

I worked all day yesterday until 8.30 last night.  I worked doing what I love so although it is absolutely exhausting, in some ways it fills me up too.  But when you add an odd (read:  frigging scarey) seizure into the mix, just as I am trying to fall asleep, it turns my recovery day into a bit of a down, can't-get-out-of-my-own-way kinda day.

All morning I have been feeling as though I'm just not sure how I'm doing today.  Am I just tired?  Am I frustrated? Am I frightened for my child? Am I overwhelmed?  What the hell am I??

And then this little piece landed in my inbox.  I'm going to copy and paste it below.  It's written by another Mother of a special needs child, and I don't think that I could ever have written anything so perfectly. 

I'm putting it up here for a few reasons.  The first reason is that I really want my friends and my family to read this.  Please don't just let your eyes move over the page.  Please take it in and process it.  Not because I want you to feel sorry for me but because I want you to understand me on a level that I just can't explain to you.  When you ask me how I'm going.....my answer will always be 'good', because I want to be 'good', because I choose that for myself.  But sometimes my answer is 'good' because I just don't know what else to say.  The second reason I am putting this up here is to help other parents in similar situations try to decipher what their feelings are.  Sometimes their feelings need to be written by someone else.  And the third reason is to inform.  There are so many people out there with disabilities or who are raising children with disabilities and if I can help just a few of you to see more than what is on the surface of their lives, the world will be a much more empathetic place.

Please don't feel sorry for me or for Ayla.  We really do have an amazing life and we see and appreciate things on a completely different level to most.  Most days I move through life with happiness and excitement and a desire to be exactly where we are.  It's just that on some days, I'm so tired or frightened that for just a moment....I can't be that person.  Just for a little while.

7 Things You Don't Know About A Special Needs Parent

Posted: 03/ 9/2012 5:21 pm

About 6 million kids in America receive special education, according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness.
My 3-year-old son Jacob is one of them.
He has a disorder of the 18th Chromosome. The 18th Chromosome has various named disorders, including Ring 18 and the more well-known Trisomy 18 (which affects Rick Santorum's daughter, Bella). My son has the more rare 18q-. Only 1 in 40,000 Americans have Chromosome 18q-, which means that less than 7,800 Americans are affected by this disorder.
Because of this disorder, Jacob has had serious medical and developmental issues. He has had heart surgery, kidney tract surgery, bronchoscopies and endoscopies, slept with an oxygen tube, and has had dozens of medical tests and sees numerous specialists. We've been in and out of hospitals and doctors' offices since he was three months old. He also has severe developmental delays and receives speech therapy, occupational therapy, physical therapy and behavioral therapy.
Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don't know the depths of victory and joy until you see your child overcoming some of those challenges (sometimes while smiling like a goofy bear).
Chances are that you know a special needs parent, or you may be one yourself. As a special needs parent, I often don't share my feelings on this aspect of my life, even with my closest friends, so I decided to compile a list here with the goal of building understanding (I was largely inspired by this beautiful post, authored by another parent to a child with a chromosomal disorder). I don't claim to speak for every special needs parent out there, but from the ones I know, some of these are pretty universal. If I've missed any, please leave a comment below.

1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.
2. I am jealous. It's a hard one for me to come out and say, but it's true. When I see a 1-year-old baby do what my son can't at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair." Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob's rare condition. It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him. Which leads me to the next point...
3. I feel alone. It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2-year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it's so not what my world looks like (check out Shut Up About Your Perfect Kid). It's been a sanity saver to connect with other special needs moms, with whom it's not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob's unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.
4. I am scared. I worry that I'm not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about Jacob's future, whether he will ever drive a car, or get married, or live independently. I am scared thinking of the hurts he will experience being "different" in what's often a harsh world (not to mention that I fear for the physical safety of the person who inflicts any hurt upon my son). I am scared about finances. Finally, I fear what will happen to Jacob if anything were to happen to me. In spite of this, my fears have subsided greatly over the years because of my faith, and because of exposure to other kids, teenagers, and adults affected with Jacob's disorder. When I met some of these amazing people at a conference last year, the sadness and despair that I was projecting onto Jacob's future life (because it was so unknown) melted away when I saw the love and thriving that was a reality in their lives. The fear of emotional pain (for both me and Jacob) is probably the one that remains the most.
5. I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... " I know people usually don't mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It's disrespectful and hurtful to those who love and raise the kids you're mocking (not to mention the kids themselves). As for the last comment, "as long as it's healthy," I hear a lot of pregnant women say this. Don't get me wrong, I understand and share their wishes for healthy babies in every birth, but it's become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. "And what if it's not healthy?" I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)
6. I am human. I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son. Which leads me to the final point...
7. I want to talk about my son/It's hard to talk about my son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don't often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn't mean that I don't want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like "How did Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than a more generalized "How's Jacob?" which can make me feel so overwhelmed that I usually just respond, "Good." Starting with the small things gives me a chance to start sharing. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to.
Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I'd come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary "performance" difficult or even impossible.
It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is -- no matter how they stack up against what "should be." Raising a special needs child shatters all the "should bes" that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don't know about a special needs parent... I may have it tough, but in many ways I feel really blessed.

Follow Maria Lin on Twitter: www.twitter.com/marialinnyc

Catchin' Up in Queensland

My poor neglected blog .... and followers!  I blame Facebook!!  LOL.  Seriously, everytime something little happens it goes straight to FB and then I realise that I have nothing to blog about.  So this time around, I am coming straight to you.....PROMISE.

Ayla and I have just spent 4 lovely days in Brisbane with Grandma and Grandpa.  We went up for a few different things. 

I had a 2 day conference to become one of 40 GAPS practitioners in Australia and I am currently just 1 of 200 worldwide!!  Weeeeeeee.   It's very exciting, especially since we have been told just how rigorous the selection for the conference was.  I'm feeling very privileged right now and just a 'leeeeetle' bit chuffed with myself.  GAPS stands for Gut and Psychology/Physiology Syndrome and you can find out more about it here.  If you or child is on 'the spectrum' (Autism Spectrum) or are sickly, prone to food allergies, have constipation, diarrhoea, asthma, eczema, epilepsy or tonnes of other conditions that fall under the GAPS list.....then check out that link.  It could seriously change the lives of your entire family.  I'm living proof....I have experienced eczema since the age of 7 and I am now completely eczema free.

Had to get a 'fan' photo with Dr Natasha Campbell-McBride!

 

While we were in Brisbane, Ayla also had her very first visit to the Dentist.  All clear there...no cavities and nothing to worry about, and Mummy was shown some tips for cleaning the monkey's teeth.  Mummy's got your number Ayla!!

Going Up, Up, Up on the Brisbane Wheel!

 

And then yesterday we FINALLY had our first visit with her Paediatric Neurologist since the seizures started back in August last year......yes, it really took that long!  For the past 4 weeks we have been gradually reducing one of Ayla's medications (Keppra).  This drug just wasn't for her.  Within weeks of it starting we were getting regular clusters of her 'BIG' seizures (aka Tonic Clonic) which are far more dangerous than her regular Myoclonics.  Every time the dosage was adjusted was a disaster.  Even when we started to adjust it down we had some scary moments.  It's finally gone now and we are staying on just the Epilim for the time being so that we can monitor what her seizures do and then we will start a new drug to see if we can reduce her Myoclonic seizures from EVERY DAMN NIGHT to a more respectable 'every 3 or 4 nights'.  It remains to be seen whether she will respond to any of it but if I have to fill my beautiful girl's pristine system with disgusting and addictive drugs, I would like to think we could have some relief for her.

Beautiful Brisbane day...

 

Aside from that Ayla had a lot of fun with Grandma and Grandpa, she briefly caught up with Nanna too.  I'm so sorry you didn't get to spend longer with her Irene!!  She was really uptight on Monday night and didn't go to sleep until almost 11pm and then kept waking up all night.  And we caught up with our very good friends Fran, Tony and Lucia.  Lucia and Ayla had a great time playing together and both of them have grown so incredibly TALL!!

 It's hard not to snap a shot when she's being so darn cute.

 Swimming with Grandpa at Southbank Beach.

I think you can see from the photos that we all found a new appreciation for Brisbane.  It was great to be so close to everything and just walk everywhere.  I do miss you QLD!!!  But for now our lives are further south.....and we love the ACT too.