Time has moved- not as fast as other parents might feel- but it definitely has moved on past those horrible sleepless nights which lasted for months and months. Luca still wakes up 1-2 nights a week, but I can cope with that. It also helps that I still go to bed at 8-8:30pm (yes, even when the sun is still up)!

2019 has meant a full year without a hospital visit for Luca. While all around him, his little mates have dealt with some horrible hospital stays and some precious lives have also been lost. We are so fortunate to have our boy in relatively good health. He has created some beautiful friendships whilst attending his kinder and SWAN playgroups.

In the next few weeks, we will say goodbye to some of his kinder friends. The kids that tell me what type of day Luca had at kinder. The kids that go get his favourite toys out when they see us arrive. The kids that help him wash his hands. The kids that don’t have any idea that theres something “wrong” with Luca… they just know him as “Luca” and they help him. And love him and care for him. Things change when kids get to school age- they get a bit frightened of things that a different.

Luca and his kinder friends all graduated last week. Tears flooded my eyes as all the horrors we endured in the first few years of his life flashed through my brain. I watched him being held with love and fierce loyalty by his aide,  Christylee. He was wearing a graduation gown and hat. Absolutely ridiculous for any other kid- but to see my boy there- alive- graduating kinder garten- I was a teary mess. My crying went from sad to joy to sad again thinking about Luca no longer having Christylee by his side 3 days a week. Needless to say, my tears are falling again as I write this.

Next year, Luca will be attending a specialist school 5 days a week. He will have new teachers and allied health specialist to wrap around his finger. We have attended 3 orientation sessions and he has done well in all them (although a bit screamy-which I’m told all preppies are initially!). There is no more than 7 students per class. He will be collected (in his wheelchair) by a bus, from our house. The bus will take him to school and then bring him home in the afternoon. The school and its facilities, itself are absolutely amazing. I have cried (again) many times at how lucky we are to live in this country and area and in this time- where schools like this exist. My mum came along to one of the sessions and also cried at how wonderful the school is.

And just because going to school isn’t a big enough deal… Luca will be starting horse riding next year with Riding for the Disabled (RDA). This is a 30 minute session where (eventually) Luca gets on a little pony and two people help him stay on and one person leads the horse. It is extremely good for his core, balance and posture…. not to mention something just for him (that his sister will be jealous of). He did a bit of screaming on the day of assessment, but they re-assure me that some kids don’t even get on a horse for the first few sessions… then eventually they’re ok. I’m ok with this- and Luca will have to be!!

Luca is not walking nor talking but he’s mostly happy -so we’re happy.  From our little family to yours, have a lovely Christmas and happy new year.

N xo

 

I write this in a foggy, shakey daze. Last night, Luca woke twice. He is like a newborn all over- but his screams aren’t very cute. I have two pairs of slippers now. One for normal wear and the other, for overnight Luca wake ups. They are soft and don’t make a noise to try and keep Luca’s dad and sister asleep. Sometimes, no matter how quiet I’m being, Lucas’ screams become too loud, too constant and wake the house. In the morning, Luca is not happy. His sister is not happy. I am not happy. I email his paediatrician and hope that the new dosage of a particular drug will be the answer. And one night it is. He sleeps through the night. My batteries recharged. The next night, the drug and dosage that worked the night before, makes hardly any difference and he wakes and screams like never before.

This vicious cycle has been going on since April. Four months. Might not sound a lot, if he was a baby- but you know, he’s four and a half years old. A medication Luca was on to help him sleep, was suddenly discontinued by the drug company. My consistent sleep- gone. In my eyes, its super hard to find Luca “cute” right now. Of course I love him, but our friendship is very strained at the moment. His favourite thing to do is eat- but lately, he’s been screaming while I feed him too.

Since my last blog post, I’ve had a few escapes. Yet, always long for the next one. When Luca has stays at Very Special Kids, all the staff tell me how much they love having Luca and everyone fights over who is going to take care of him. They love his cuddles. They love tickling him. They love his quiet and timid nature. They think he is so cute.

Luca had his official assessment with our local Specialist School. I’m so bloody excited about him starting next year. The staff all commented on how cute Luca was and how they will all be fighting to work with him. In his classroom, there will be a max of 7 kids (all with various forms of intellectual and physical disabilities), there will be daily access to physics, occupational therapist and speech pathologists. It’s such an awesome school and fit for Luca.

But what happens when he outgrows his “cute”? Will he be fussed over as much as he is now? What if this screaming stage is not a phase? I’m fearful for all the love he gets, just… disappearing. I don’t want people to shy away or be scared of my innocent son. But my biggest fear is fearing my own son. The more he screams at night and day, the more tears he cries- he more anxious I am to see him or be with him.

Just give me a full night’s sleep and he’ll be my best mate again AND the cutest kid in the world.

 

It’s 3:30am and I’m wanting to escape to the gym. But, even I think 3:30am is a crazy time to go- so I’ll wait till 4:30am. Luca has been screaming since 1:30am. I have done the things that any parent of a newborn would do. Check his nappy. Give him cuddles. Try rock him to sleep. When all this fails, I give him a top up of “melatonin”- which is meant to help him fall back to sleep. He obviously didn’t get the memo. When will he stop? When can I go? Where is that light at the end of the tunnel?

I wish I could say this was a once off, but, this has been the case for the past 6-8 weeks. 2 weeks ago, in the midst of tears and pulling my hair out, I called Very Special Kids (VSK) for some emergency respite. I couldn’t do it anymore. I didn’t want to look at the boy who was keeping me up at night, and sending me into a mental decline. VSK were able to have Luca for a “holiday” of 4 nights last week.

Before Luca went to VSK, I was a mess. My batteries were dead. 4 nights later, I was my usual positive, bubbly self again. When he came home, that night my batteries started to drain again. Sleep deprivation is a mode of torture and I can’t see the light at the end of the tunnel. Thankfully, I have people lending me torches to help guide me through.

We are planning an escape from the cold, Melbourne weather this weekend. But with this, I am also getting quite anxious. My husband will not be with us, but my parents will be. I’ll be on the plane with both kids. Last time Luca was on a plane, it was very stressful, where I had to hold his crotch the whole 3.25 hours to Cairns. This time, I’m more equipped. I have purchased the seat ALLOWED by Virgin Australia, which means, Luca should be able to sit comfortably on the plane. I’ve noted when booking flights he is DISABLED- a word I feared to say this time last year. I have called ahead to make sure there are no hiccups- because honestly, people with disabilities have enough crap going on- without hiccups along the way. I’m doing my best to make this trip as easy on everyone as possible.

Once we get to Cairns, the kids and I will be in a seperate apartment to my parents. Just like a parent of a newborn- I am fearing what the nights of my “holiday” will bring. If Luca is going to cry all night, wake up my daughter and me- and maybe all the other people in the apartments next door. I am very fearful of this not being an escape at all.

As always- no real updates about anything except:

*Luca doesn’t need glasses at this stage

* Hip xray is going to be next month

*NDIS plan came through and was really pretty shit- and just like everything else- we have to fight very hard, and do lots of admin just to get my son a wheelchair, or walker or whatever else he needs to help him get around in life.

*Luca’s amazing kinder teacher has quit- so while he has his carer- we don’t have the amazing woman that helped him as well as me.

So, I am currently trying to dig myself out of this funk. Writing this blog always helps. Exercise helps- so I am forcing myself to class this morning.

No photos of Luca because he doesn’t want to be my friend at the moment.

 

In the past couple of months, a few small wins have warmed my heart. I can see my littlest love, Luca’s little brain working and recognising how things work.

The first real recognition of him understanding how to make things work, or “cause and effect” was when he was introduced (many months ago by his speech pathologist) to a “switch” button. When you press on this button it has a recording of my voice saying “more”. When feeding Luca snacks, I will use this button. I put it in front of him and if he wants more food- he knows he’s not going to get it, unless he presses that button. A funny/cute thing Luca does is presses things with his nose- we’re trying to sway him to use his hand more! At Kinder, his teachers also use this button. They now no longer feed him more than 4 bowls of food in one sitting!! If he doesn’t  “say” more- they give him no more. Luca is very good at eating. If you put a spoon anywhere near his mouth- he will ALWAYS open his mouth- which is why, the “more” button is so bloody great. He will now only get more if he asks for me. He gets it.

Doctors and carers will always ask me, “what does Luca like and what doesn’t he like”. I know this is very helpful to them- but its always been so frustrating to me because its VERY hard to work out what my own 4 year old son likes/dislikes (and with that comes a level of guilt!). Until….. Luca started to show an interest in toy trucks. We don’t have toy trucks at home. So he would happily play with them at kinder- not even realising I’d left the room. Like most objects, he picks up the trucks and studies them very carefully. One day a few weeks ago, a neighbour was having something done that required a large truck. Our dining room window sees right onto the street. Beep beep beep, the sound of the reversing truck went- and zoooooom off Luca went. If you can imagine Usain Bolt crawling… that’s how fast Luca made his way to the window and just watched this truck as if he were hypnotised. Ok, so now I know that Luca loves three things for sure. Trucks, water and music.

The next thing, I’m still not 100% sure Luca has grasped. But kissing. Ask any girl at his kinder and they will tell you how much they love kissing Luca. I adore kissing Luca. His cheeks are so soft and unlike most 4 year olds- he does not try and wriggle out of your kisses- or tell you off- or try and run away! So its so easy to get carried away with kissing him. Well, recently, we’re pretty sure he’s been trying to kiss us back. I say trying, because he open-mouths you and then pulls his head back away from you…. and then… smiles. GAH! Its a little bit cute.

So these are the things Luca has noticeably learnt in the last 2 months. In the next month we have a few medical appointments coming up:

1. Eye doctor- pretty certain little man will be getting some cool specs next week.
2. Orthopaedic surgeon for hips- to see if they have progressively shifted into the position they should be in… if not, he may need to look at surgery? or a cast? Don’t know!
3. Hopefully we find out how Luca’s diagnosis is coming along!! (we were told March/April)

Onwards we slowly march/crawl.

I’ve just sent off a rather quick email to our genetic counsellor to find out if there is any new information- or indication- of what Luca might be diagnosed with. Once upon a time, this type of email would be so heavy with emotion for me. But now, it’s just in the back of my mind…

In the forefront of my mind, is watching my son grow. He may be super slow, but he is definitely growing. In one week, Luca turns 4. This time 3 years ago, I was using all my energy and thoughts to make sure Luca stayed alive for his 1st birthday. I question myself whether I should stop mentioning Luca will live a short life- because really, at this rate, he aint going anywhere. He is progressing- not regressing. The thought of Luca dying upsets me greatly, but the fear of him outliving me is gut wrenching. (Rest assured, that we had our wills done at the end of last year- to make sure Luca is well and truly looked after in the event something horrible happens).

So Luca turns 4 on the 21st February. This year is a lot low key than previous years. No fund raising or jumping castles or football game or face painting. Just immediate family around for a bbq. As Luca grows, I can finally start to see what he likes and doesn’t like. He doesn’t love a big party filled with people- but he does love his family who all adore him. He does love Elmo. He doesn’t love eggs and peanuts- because he’s severely allergic to them!

With turning 4, comes responsibility of learning and going to kinder. Two weeks ago Luca started kinder two days a week at the childcare he’s now attending. They love him there. The girls in his class literally line up to give him cuddles. Luca is VERY good at cuddles which is something I didn’t think I would ever get from him. (Still working on kisses). As from next week Luca will have his very own aide with him, for 15 hours a week, while he is in a kinder session.

The little man still doesn’t love his walker. But we still put him in it most days. The longest he has been in it has been 1 hour. There is a child at his childcare that has the same walker and can not wait to get himself in it to run about. Hopefully Luca will get to this stage too- but maybe not- WHO KNOWS! His physio is suggesting we look at another walker in future. His core is doing amazing things- so I know he will walk one day. Perhaps to give me a cuddle and kiss.

Luca’s overall health has been very good (typing on wood). I can’t remember the last time I walked into his bedroom fearing the worst. It must be a couple of years. I feel so incredibly lucky that Luca is in good health. When he is in good health- I am in good mental health. When your child is admitted to hospital- normalisation is gone. Your day to day routine- ruined. I salute all you mums and dads out there who are in and out of hospital with their little ones. Especially all those unique SWANs (Syndromes without a Name https://swanaus.org.au )

We’re STILL waiting to get an NDIS plan. It has not rolled out in our area yet. It keeps getting delayed. The only positive to this, is learning all the ins and outs from other parents who have gone through the NDIS process.

Well, in the time that I’ve written this post, our genetic counsellor has replied to my email and said that Luca’s results are currently in “analysis in progress” stage. The next step is to set up a meeting to discuss results. Perhaps I’ll have an update in a month or two. For now, I shall enjoy the slowwww progress my almost-4 year old is making.

So much has happened in the last few months, I struggle to find the right place to start. The biggest social change for Luca has been moving him from one childcare centre, to another. It saddens me that his carers at previous childcare were so upset to see the back of him- he loved their cuddles. His new carers are so very happy to have this little boy/sloth/puppy dog in their lives.

One of the big things about Luca’s new childcare, is that there is lots of room for him to move around in his walker….. whats that? Did I say… WALKER?! Yes, I did. Thanks to his amazing physio, and Scope, Luca now has a walker to help him try and walk. It may only be 15-30 mins a day… but my little man, is up on his feet and happy to be upright.

Not long after receiving a walker, Luca was fitted with his “Second skin” suit. Think of it like a cross between a corset and a wet suit. It has boning in it and zips up in 5 places, to ensure his core is pulled in and working as it should. It changes his posture, to how it should be. This is like “wearable physio therapy”.

Last week, our neurologist, who specialises in seizures, dumped Luca.  That sounds a bit harsh, but really- it’s great. Luca is no longer having seizures- therefore, no longer needs to see the neurologist specialising in seizures. It’s a shame, because I loved Dr Freeman- and we’d been seeing him for some time. However, the time had come, where we had to part! One less doctor!

Another hospital appointment we had last week (of course not on the same day) was for the orthopaedic surgeon. They had to assess Luca’s hips to see if they need surgery to correct them (as they were 30% + out in the left and right hip). They took an X-ray and advised that the hips are still a bit out, but walking should help correct them. For now HE DOES NOT NEED SURGERY- but they will assess again in 12 months.

In between all these specialist appointments, Luca and I squeezed in our first SWAN playgroup. I’ve mentioned on SWAN before. SWAN are: Syndromes Without A Name. They are amazing and our little tribe. Our very own support group- for those of us whose children’s issues can not be labelled or pigeon holed.

We are still waiting for that elusive diagnosis. DNA samples taken and sent off at the start of the year have not come back as yet… but, we’re just living life. Theres so many positives that are happening with Luca. It would be silly to dwell on a label/diagnosis…. but the question is ALWAYS in the back of my mind. He is alive, and from what I can see, not going anywhere, anytime soon. He’s pretty nice to me too.

The opposite to having a fantastic support network, there are some areas in life, where, having a child with a disability can make you feel like you’re a burden. By nature, I do everything in my power to NOT be a ball breaker to friends, family or even strangers. So, when someone or a business makes you feel like, you having a child with a disability is hard work for THEM, its the absolute pits. The situation is out of MY control. We need to live our lives, and hope that others CAN help us get through it as normal as possible. I won’t name names or types of businesses that have let us down- it does not benefit anyone but there is a big one in my life, that I am so pleased to be moving on from. It has been such a stress for me over the past 4 months. I have not felt welcome and I guess rejected.

Recently I shared a story on my Facebook page about a mum, who has a child around Luca’s age, who was let down by an airline. They tried to slump this  boy (who is quadriplegic) in a “normal” toddler stroller (which was someone elses). This is just an example of what can happen to people who have disabilities. They’re made to feel like it is THEIR problem to sort out. As if they are the burden.

Inexperience is one of the major factors. The answer going forward is better education for people in customer service/face to face roles especially. (Or maybe teach it in schools?! ) They really need to show compassion, without pity. Really recognise that WE don’t want to be a problem. We just want what everyone else has. Without hassle. Without feeling like a burden.

 

To be brutally honest, I very much doubt I would be here if I didn’t have a good support network. In Luca’s first year, I took so many punches from the world. This was the world that was meant to just provide me with a healthy son- but blow after blow my body and head hurt. Professionals kindly and gently told me things weren’t right… they’re not sure what was wrong, but things weren’t right. No matter how nice someone says it, it bloody hurts. And I mourned the son I dreamt would play in the World Cup and buy his mum cars and houses. Or the son I’d have beers with. Or the son that would simply call me “mama”.

When mourning, dark thoughts would enter my mind. I would have baths and think of just staying under the water and thinking everything would be fixed. I could just float away from this bad dream. I cried daily. Howled. I couldn’t function. I was a slave to my sick son who had turned my life upside down. I was sleep deprived. I had a husband who didn’t know what more he could do to “fix” things. So, I figured, I’d take myself to the GP to “fix” me.

I couldn’t get into my normal GP, so saw someone else. He was my initial life saver- literally. That first appointment, he called my mum and told her I was a serious danger to myself and I needed help. From his point of view, I had put so much pressure on myself to be the perfect wife, the perfect house keeper, perfect mum and perfect daughter- all while trying to deal with the shit that came our way not long after Luca was born. He asked my mum to come be with me 2 hours every day in the afternoons before Marc came home from work. She did. He ordered me to hire a house cleaner so I didn’t have to worry about that. My mum did that too. (What the hell would I do without her?!) He then booked me in with a psychologist down the road who I could spew out all my inner thoughts to.

I find it hard to remember a lot about that period of time. I know I have blocked out memories. I have a form of PTSD when I hear small babies scream/cry. I find it very hard to hold or acknowledge babies under 18 months- especially boys.

When people discuss their mother in laws, they usually do so, with a look of disdain. Well not me. It’s ridiculous how much I adore her. From the get go- I’ve never been any one but myself with her- and if anything, she encourages to be more crazy. She is an ex OT. A carer by nature. Her moto is always look after the carer. So she is always, always looking out to ensure I’m doing ok. I speak to her often on the phone. She checks in on me. Often the diary comes out to see when she can have Luca for a weekend to provide some respite. I can’t ever thank her enough for always thinking of me and how she can help. I should point out- that all my in-laws have pitched in with helping look after Luca.

My social worker has been along for the ride for a while now. She has heard and seen me in the worst of times but is the kindest, gentlest person in the world. She’s exactly what we all need. The support she has given me, not just emotionally with phone calls and hugs, but practically, when it comes to organising paperwork or centrelink calls or whatever. She truly is an angel.

Every so often, we may have a holiday coming up or I might just want a few nights without worrying about Luca’s feeding, sleeping, screaming and pooing- so I’ll book him into Very Special Kids for respite. He’s looked after by the most amazing carers and nurses. He has his own room. Has art or music therapy there and most recently had a visit from ex racehorse, Subzero. I feel very fortunate to have this option available to me, as this isn’t available to all families of kids with special needs/disablities.

I have my darling friends who are near and far in other countries. Just a simple text to see how I am, is very warming and means the world. My husband has always been there to help my brain chill out a little. Stress a little less. Never any pressure on me to be anything more than I am. Always supportive of things that excite me and help me feel better.

The love I feel from my family, friends, Drs and support services have all kept me afloat. Kept me positive. All in their own ways. So, do I have a good support network? Damn straight I do and I am so, so very appreciative of what Luca I do have, which outweighs what we don’t.

 

 

Fail. No diagnosis.

So, we go forward with more testing. Whole genome and RNA sequencing.

It seems Luca doesn’t want to be pigeon holed. Wants to be unique. Possibly wants his condition named after him?! Such a diva.

This week has been rough, mentally. I’ll be back to psychologist ASAP. But for now, I’ll be having a couple of margaritas and tears.