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.