Having that feeling of being trapped. I feel chained to my sick son and no idea if I’ll ever be unchained. Ever be me. Ever have dreams and a future for me. Ever have answers. I am more than this, but I’m stuck.

A few important dates coming up in the next week. Firstly, on Sunday 18th February, we’ll be celebrating Luca’s 3rd birthday, in conjunction with Essendon Royals to help raise funds for the Australian Mitochondrial Disease Foundation (AMDF). The event is at Ormond Park, Moonee Ponds and starts at 10am. All welcome.

Secondly and MOST importantly, on the 21st February, my darling boy turns 3. Bloody 3 YEARS OLD!! I truly feel like he is only 18 months, and not because of the common parent complaint of “he’s growing up way too fast” but more, because the first 18 months were a a bit horrific and traumatising. The anxiety of not knowing what is wrong with my child. And then the anxiety of believing he’s not going to wake in the morning. 3 years old and do we have a diagnosis? No. Still waiting.  3 years old is huge. From 18 months is when I started to enjoy my son, without as many stresses. The biggest difference in the last 18 months, compared to the first is the lack of hospital admissions. To pack ourselves up, and take ourselves to hospital and split the family up is a huge drainer. Not to mention, no one has great sleep and the waiting and waiting and waiting for answers… still waiting.

Which brings me to the last important date, 23rd February. This date will mark the 1 year anniversary of Luca’s last hospital admission. I’ve been bragging about this date for the past few weeks, “its almost been one year since he’s been admitted to hospital”. This has been a huge thing for me mentally.

Well, almost jinxed it last night. Luca was shaking for most of the afternoon, then slept a full 4 hours before I had to wake him for dinner. He had a temp and the moment I put a spoon to his mouth he spewed and spewed and spewed. If this was my daughter, I’d just clean it up and sort her out… but being Luca- theres always that underlying “what if I don’t do something and he dies- because of me”. The shaking was like Parkinson’s, so threw me off a bit. So, we went to hospital. I packed our bags to stay in overnight- just in case. The “perk” of Luca’s condition, means we usually get to go through triage and ED within 5-20 mins. They gave him a little wafer to stop the spewing. His temp came down and I managed to get some hydrolyte into him (he can’t drink from straw or bottle- I have to tip it back into his mouth). We had to organise a urine sample, which sounds easy, right? Well, its bloody not for me! Sitting next to Luca on the bed, staring at his “junk” while waiting for him to pee in the cup. I stared for 30 mins without pee. Then when it came out, you would have thought I won a gold medal in the womens Snowboarding (ha!). I CAUGHT THAT GOLD MEDAL IN THE CUP! Anyhow, urine was all good, and they gave us the go ahead to GO HOME. No overnight admissions. 😀

So, as I write this at home, and Luca is safe and sleeping in his bed, I consider myself hashtag blessed to have these 3 important dates over the next week for my big 3 boy. If you guys want to come down and have a drink and cevap with me this Sunday, please come down. It’ll be such a great, family fun event. If I only catch up with you, once a year- do it Sunday. Weather looking perfect and 25 degrees. (subject to change!)

If you can’t make it down, and would like to donate to the AMDF please do so here:

DONATE HERE

xo

N

In the last 24 hours, I’ve had thoughts of the future. Good thoughts. Usually, they’re bad thoughts.

What if Luca could walk?! How would my life change? He’d be so cute toddling along. I’d have to have patience and wait for him- but it’d be so worth it. Him climbing into his car seat. Him holding hands with his sister. Him maybe even kicking a soccer ball? Or my daughter’s dream; playing tag with her brother?!

Yesterday, Luca stood against my legs. Did the same at childcare and then the same with his Nonna. Later, his dad encouraged him to stand (holding his hands) and (super) slowly, he put one foot over and in front of the other. It’s a start!!!

Merry fricken Christmas!

Time flies when you’re having fun! And we are having fun! Luca has been completely off his anti-seizure medicine for the past few weeks- and no known seizures to report.

In October, Luca was given the opportunity and honor to be the Page boy at my good friend, Nats, wedding. Nat asked if both my children would be a part of her day about 18 months ago. I turned to her with pride, hope and horror. “I’m not sure Luca will be with us, and if he is, in what compacity…” Nat said she wanted to have him apart of the day- and if he didn’t make it, then at least we all knew he was wanted to be in the party.

Luca WAS pageboy. Nat’s maid of honor, Hannah, held Luca as they walked down the aisle. We pinned the rings to a cushion, and then tied this around his wrist (he can’t hold things for long). Hannah then walked over to the best man, who took the rings from Luca. I then collected Luca from Hannah’s arms…. and hey presto- Luca’s job as page boy was fulfilled! What a beautiful moment and I’ll be forever thankful to Nat & Cam for their special day- which was as special for us!

Christmas is coming! So, I got cracking on those cheesy Santa photos. This is our 3rd year with Luca in them. I will get as many as I can in future years.

We have a few medical appointments coming up. Dentist next week, due to Luca’s grinding of teeth! Also, waiting for results from HARVARD research. Will we get any results?! Time will tell. Merry Christmas and a happy new year to you all. Xo

A few things have happened in the past few weeks, which has found me circling the dark downward spiral of Dr Google diagnoses. A place I thought I was beyond. No good can come of Dr Google- everyone knows that.

So firstly, we had a neurology appointment- which was good. Positive, easy, quick.

Dr: “Is Luca having seizures?”

Me: “erm, I have no idea… its very hard to work out absent seizures” (people go blank in the face- no shakes or anything else… so no idea if Luca is just spaced out or having a seizure!)

Dr: “ok, we’ll ween him off his anti-seizure medication”

Hooray! After 7 weeks, he should be medication free. Unless, I notice seizures- which I never have been able to except when they were non stop and life threatening!!

Secondly, we had our “Developmental Medicine” appointment, which really gave us no further insight. I asked what can we do to get an official diagnosis and the (really super lovely and friendly) Dr laughed and said- “we can’t magically pull something out.” From that appointment, she explained that if his hip doesn’t fix itself by January, then he may need surgery to correct them. They MAY fix themselves, with the extra movements (crawling and 1/2 standing poses) he’s been doing. He’s also been referred to dentistry for his constant teeth grinding.

Thirdly, I had the chance to visit a friend in NZ recently. She has twins that are 6 months older than Luca. I am past the stage of comparing what kids Luca’s age can do and what he can’t do. But, after having a weekend full of 3 year old cuddles, energy, attitude, tears, chats, I came home and literally forgot that my 2.5 year old son can’t/doesn’t hug or kiss me. Let alone, use that desperate tone to call for his mummy in a toddler crisis.

So, what can I do? Back to square one. I can’t do anything but Google Luca’s symptoms. “Non verbal”, “super slow motions”, “rare diseases”, “life expectancy mitochondrial disease”, “dystonia” etc etc…. none of these give me answers that I need… Nothing new. I can’t diagnose my son. I don’t know who can.

Dr Google can’t help me. I end up going to AMDF’s website, to find comfort in people’s stories. No two sufferers are the same. It’s not the answer, but it helps to suck it up and move forward. Ahhhh Limbo land.

****

On a positive- my boy has started to go from knees to stand against couch position- as well as downward dog. (I must remember these positives sometimes!!)

Next month I’m doing The Bloody Long Walk, if you can spare a buck to support AMDF, please go to https://blw-melbourne-2017.everydayhero.com/au/nadja .

I always found when meeting with my psychologist, that when things were going well- I didn’t have much to talk about. Awkward. Just watching the clock. In fact, in the past 2 months, I have delayed my next appointment, by a few weeks, a couple of times. I’m about to call her again to do the same. I wouldn’t dare CANCEL an appointment- no no… because WHAT IF something happens, and life turns itself on its head. I need my psychologist appointment- kind of like a blanky.

So, the same can be said about this blog. Not much to chat about. I mean, I’ve already bragged about Luca finally crawling 4 weeks ago, right? I didn’t? Shit. Thats kind of a major milestone. Sorry guys! Like everything, he’s definitely not super fast at crawling. And he only crawls to one thing… and it aint Mama. Its his bloody noisy, yellow trumpet (thanks Nonna), which I’m pretty sure he thinks only works if you touch it with your nose.

I’m too lazy to check, but I’m sure I posted about him sitting in an IKEA highchair, mostly with ease? Crap. I didn’t. Yeah, thats a pretty big deal too. It means, I can easily take Luca to cafes and sit him in a high chair. Or, not have to take his chair to trips to my inlaws. -all that extra luggage space in my new car, which we bought specifically to fit more of Luca’s equipment in.

So, it seems, its pretty easy to be lazy (and not blog), when life is good. The old “no news is good news” has rung true. Thanks for all your love and support. If I don’t blog for a while- you know its a good thing. 🙂

High 5 for high chair!

Trying to stand for his beautiful social worker!

Luca is going to Harvard! That’s not a sentence I ever thought I’d type (twice). 1) because I was preparing myself to say goodbye to Luca in the first two years and 2) because we live in Australia. But its true. Well, his, mine and husband’s DNA is going to Harvard.

A few weeks ago, after 18 months of research, a Dr emailed us with the following  deflating words:  “Unfortunately, I was not able to find an answer for you.” We still stay in limbo land. We will still see Luca as having a Mitochondrial disease, but from the 4350+ genes they studied/tested- they were/are unable to find the gene that is mutated or causing the issues. This puts Luca in the “rare disorders” category.

With that news, came the almost hopeful news of them sending off the DNA samples to Harvard for further testing. In the past, 10-20% of parents who have gone down this path, that have had a negative result in Australia, are given a result. So, theres a chance. I guess the type of “chance” I’m looking for is… just a label, name or number for what he has. To feel like I have some control or answer… even though I won’t have any.  This is positive news. It makes me feel like I’m doing something-even if it doesn’t achieve anything. We should receive results in 3-6 months.

While the positive wheels are turning,  that in the past two weeks, Mr Strong (Luca) has been sitting in a high chair at his grandparent’s and Nonni’s houses. He sits there without flopping his head forward for over an hour. Its amazing. We don’t sit him in a highchair at our house because I PUT OUR HIGHCHAIR ON THE NATURE STRIP FOR RUBBISH COLLECTION…. YEP, another one of those emotional moments where I thought I’d never see my son sit comfortably in a highchair- so chucked it out! (I’m a chucker, not a hoarder) I will be going to Ikea soon to collect another one. This changes so many things- mostly- when we go to a cafe- we can say “yes, we need a highchair”- not “no thanks, he can’t sit in a high chair”. Also means we can fit in teeny tiny cafes. Its all about the cafes. #brunswickhipstermum

As if sitting in a highchair wasn’t a big enough achievement, he hass been going from knees to feet while holding on to me. He’s really doing his best to try and stand. Our phsyio thinks he’s definitely going through the motions that are needed. Yesterday, he had a hip X-ray to see whether his hip bones are in the right spot to allow him to stand/walk physically. We will find out in the next few weeks what those results are.

In the next few months, we have the following appointments:

• Orthoptist- to check his vision
• Metabolics- see if they have any other tests or something for our boy
• Neurology- EEG and check up to see whether he’s still having seizures. (If not, he’ll probably come off the medication!)
• Dentistry- check up and also see how much damage he is doing when he’s grinding his teeth so much.

(Soppy warning) I’m so madly in love with my little boy. He’s just the softest, cuddliest, slowest moving, quietest & gentlest creature on earth. I know for a long time I tried NOT to fall so in love with him because I was preparing for heart ache. Now, whatever happens, happens. This is my boy and I love him with every part of my body and soul. He’s going to Harvard. I’m so proud.

Attempted crawl

As I sit here, in the glorious Melbourne winter sun, I realise it’s been just under 4 months since Luca’s last hospital admission. These past few months have been amazing. I have felt anxiety slowly disappear and be replaced with such joy to have my beautiful boy in my life and to see HIM enjoying it. I AM ENJOYING HIM. This is what it feels like when your newborn starts sleeping through the night. Or makes their first smiles at you. That “I am enjoying my baby” feeling. I once worried that I may never feel that with Luca…. but here I am- “enjoying him”.

I am able to follow my psychologist’s suggestion (we’re back together by the way) to try live in the moment. It has been a hard slog… but I’m here and living in the moment. I am so bloody grateful for all the things my boy is achieving. Just last week, it looked like Luca was making moves as if he were about to crawl. This is HUGE. He moves at sloth-like speeds (I have nicknamed him Sloth-Boy) so he won’t be going too far… but the thought of him being able to crawl- and maybe even crawl to me is so huge. I am so thrilled at this progress. Earlier today he grabbed my hair and put his mouth on my cheek. I’ll take that as a violent kiss.

I will never take for granted that Luca makes such great eye contact with me. And most times gives me a great smile, or now, reaches for my face. The other night, his sister was getting annoyed because Luca only had eyes for his mama- she wanted his attention but got NOTHING. Once upon a time, Luca would be just another body in the room, but easy to forget he was there. Now, we all fight for his attention. I finally feel like we’re a real family unit. Luca is not a foreign child to us. It is 100% easier to love someone, when you feel loved back.

Most weeks, Luca’s sister will say “I love baby Luca, I wish he didn’t have to die”. Previously, I would say “Unfortunately, we don’t have a say, he’s very sick” or something along those lines. These days, I find myself saying “well, we just don’t know- maybe he’ll outlive us all”. Because right now… WE HAVE NO BLOODY IDEA.  (We are still waiting on results from the Genetics team at RCH, and in the mean time, the Metabolics doctors postponed our appointment that was for today to 2 months time- because they can’t do any more tests or give us any more information, until the genetics tests come back…. i.e. NO ONE HAS ANY IDEA.)

I am so grateful for all the love and support I receive from family, friends, social workers, allied health workers, psychologist, child care centre, RCH and VSK. We are very lucky to be living in Australia with the support we receive from the government for children with special needs. I am very grateful that my husband is incredibly supportive of me and our family. I am grateful I am able to hold my son in my arms because he is alive and reasonably healthy. I am grateful he recognises me and I bring him joy. I am grateful he is able to go outside for walks in the sun with me. I am grateful I have a healthy 5 year old that keeps me on my toes, makes me laugh and adores her brother. I am also grateful that my besty, recently had her baby boy, is on maternity leave, to bring me such happiness and positivity on a regular basis. Lastly, I am grateful for my own health- both my mind and body are doing really well.

#grateful

“Special needs”

“Normal”

When Luca was a baby, we would pop him in the pram and go walking. When you have a baby in a pram- most people smile at you- or acknowledge you in some way. Others with prams might even say something polite like “have a good day”.  When you walk alone, without a pram- and smile at a person- they assume you’re a weirdo or on drugs. They cautiously smile back, sometimes.

Not long after getting a pseudo diagnosis with Luca, we were thrust into the world of Early Childhood Intervention Services (ECIS) and Melbourne City Mission in Brunswick would be our support service. Our family was assigned an amazing social worker, Tina, who I speak to most weeks, who ADORES Luca and who has been ridiculously supportive of our family. We were also assigned a physio therapist, Jennifer who was quick to secure a special chair for Luca (before even knowing her new client from Coburg’s name- she reserved the chair under the name of Muhammad 😂).

The green chair (as we call it) was/is a life changer! I had given up on trying to get Luca to sit up in a “normal” high chair. It broke my heart, as he would slump down and whack his head on the tray. The chair inside the house is on a pedestal that can go up and down with a gas lift -meaning no sore back for me AND Luca could sit at table height with the family. The same green seat can come off and be attached to a pram/pusher frame and I can push him around-like a “normal” pram. But is it a “normal” pram?

It’s not a normal pram. And it doesn’t attract the normal reaction that a normal pram with a normal child receives. It’s not in my head. It’s reality. People in the street either don’t look into my eyes, look away or give me pity eye. I don’t want them to feel that- but I get it. I also find it confronting when I see kids or adults in wheelchairs.

So, with that in mind, sometimes, I just want to walk down the street and feel normal. Not have a stigma. Not have pity from strangers. I’m lucky enough to have a son that is strong enough that he CAN sit in a “normal” pram (without slumping like he used to).  He doesn’t have any tubes or wires attached that would require a special chair.

Today, I gave myself the choice of pram. The “special needs” pram or the “normal” pram. Did I want the world to see a “normal” or “special needs” child? I chose to be “normal” today. I just wanted to push my pram with the confidence of someone with a healthy 2 year old. Just out for a walk in the sunshine to get 1000 more bananas for her eldest child. And as I did, strangers smiled and I smiled back. The man at the shop said “what a beautiful boy, how’s he going-cheeky?” And I nodded. It was nice.

I’m not ashamed of who I am or who Luca is, nor how others behave. It’s life. Sometimes it’s nice to blend in. To be normal. Relatively care free.

Months ago, my main goal for Luca was for him to sit up on his own. He has now mastered this- and doing amazing. Yesterday, I felt his mouth on my face. It felt almost like a kiss. But it wasn’t. I’m still waiting for a kiss. I’m still pining for my first hug. Will it ever come? In some ways, I’m very lucky that my 2 year old son, doesn’t have much of a choice when I hug him. He just sits there and cops my squishy hugs and thousands of kisses on his luscious cheeks. He doesn’t try and squirm away.

This weekend, we’re off on an overseas trip. Well, Luca isn’t. The thought of anything going wrong medically, or lugging around his chair in another country, means I doubt he’ll ever have a passport. We are very fortunate that we have Very Special Kids in our life. They are able to give Luca a holiday in Malvern! With the support of Drs, nurses, carers, volunteers- he is in the best place to have the best time. There is music therapy, art therapy, a sensory room, toys, delicious food, play areas, other children (coincidentally Luca’s girlfriend will be in at the same time!!) and lots of love. We’re also very fortunate that they have family accommodation in a house behind Very Special Kids, where Luca’s grandparents and Nonni will take turns at staying and visiting, to ensure Luca is a happy chappy with familiar faces, as well as his daily carers.

Luca’s stay at Very Special Kids means we’ll be able to give his 5 year old sister an overseas trip. A trip where she comes first, and doesn’t have to be shuffled around while we worry about Luca.  And most importantly, a trip where she can meet Ariel, The Little Mermaid, at Tokyo Disney. Very Special Kids also means… WE get a break.

I’m so bloody excited for our trip to Japan. This has been the light at the end of a tunnel for me. A holiday always helps keep me positive…. Just the idea of a holiday gives me a pep in my step. As always, I am trying to fight the negative thoughts from creeping in to my brain. Mostly “what if something happens to Luca when I’m in another country”. And once again, I have to remind myself that I can’t predict the future… Every inch of me is hoping that Luca’s stay goes so smoothly, for him and the staff.

When Friday comes, I’ll be giving Luca lots of smooches. And I’ll make him put his lips on on my cheek. Even if its a fake kiss, its still a kiss I’ll take with me to Japan.