Sometimes I just can’t help it.

It’s true. I just can’t help myself. When Chloe was a baby I used to think what a ‘time waster’ she was. I could just and and watch her…watch her sleep…watch her ‘watch’, not so much watch her cry! That bit wasn’t enjoyable.

Now she’s a toddler she’s still a time waster. I can’t help but watch this little person explore. Babble. Terrorise the dog. I can sit there for ages and just watch her. The washing piles up…the dust piles up…the missed calls pile up! While I’m sitting watching her. This little person is evolving. Her personality is shining through more than ever. Even when people are talking to me I often find myself shifting my gaze to watch her. Yep, I’m one of those mums where I can’t focus on a conversation because I’m too busy focusing on her!

She fascinates me. I want inside her head! I want to know what she is thinking? Is she thinking? Or just doing? If she is thinking is she thinking in her own ‘Chloe’ language? Or is she thinking with regular speech but is unable to verbalise that?

Some of the things I love watching her do and play in our lounge room. She wanders around, from her play kitchen, to the coffee table…. She tips the play food out, finds the coasters on the table and sorts them. She plays with her train saying ‘ooo oo’ which is her version of ‘choo choo’. In between the wandering around she likes to climb up on my lap and touch my nose and make faces. Then she scrunches her nose up and does this fake laugh! She also likes to pull my hair and will quite forcefully push my head to one to side to get to my hair! I’m not a huge fan of that game. She loves to get her Upsy Daisy and put her in the train and push it along.

She also non stop babbles…. seriously…. it’s non stop! She’s a talker. Yesterday she sat on my lap with a cooking magazine and pointed to the little square on the pictures on the page. She babbles something incoherently of which I interpret as ‘What’s this?’ and I reply ‘chocolate cake’ or ‘chicken’ and then she does the sign for ‘food’. Interesting. There’s definite signs of developing communication. Sometimes I wish I had videos of this stuff! Especially since her speech delay is quite significant now.

But gee…. it’s lovely to see her doing this regular kind of toddler stuff. Like climbing on the couch and wanting to jump off! It’s not a great activity for her to do but sure is nice to see her development. Now she’s allowed in more areas of the house, like the kitchen she does love to get into the food drawer. However, she doesn’t actually eat anything! Just likes to empty it out. She walks, almost runs into the kitchen if I’m there and she does like to ‘help’ empty the dishwasher!

I hate to admit it, but it would seem Chloe has inherited not only our ‘funky’ genes, but the majority of our stubbornness and unwillingness to do anything that isn’t on her terms. It’s Chloe’s way, or the highway! It’s a good part of her personality as it’s probably the motivation that propels her forward to learn new skills.

Chloe has always been very alert. Ever since she opened her eyes she wanted to know what was around her. I can remember at 4 weeks being hospital post surgery, she would lie contently in the arms of nurses at the nurses desk, content because she could see all the ‘happening’s around her. I got a lot of comments about how alert she was. This continues to this day. She really doesn’t miss a beat!

It’s this part of her I think that got her crawling, and up and walking…. she NEEDS to know what is going on and must investigate. However, if investigating means crossing into unfamiliar territory or onto sand then she stops! We’re working on that one!

This part of me she inherited is the part that propels me forward. I am my daughter’s voice! And I’ve been fighting for some stuff for a while now.

Funding. Funding. Funding. This is almost a dirty word to me right now. It’s a great word! If you can get it! Because SLOS is not listed on any government forms it’s hard to even get the ball rolling with getting funding. There’s just no ‘area’ on the forms to actually tick or detail that will describe the daily battles of SLOS and why early intervention is so important.

In Queensland we are waiting on the National Disability Insurance Scheme to come in (this is another rant) and there are some services provided by the government, state and federally funded. For the last 2 years we have received therapy services through our local Disability Services. Most of the girls in the team (OT, ST, PT and Psych) have been awesome. But changes occur and we have slowly been losing services. Speech being the major one! Which is of the most important area right now. I’ve also been unhappy with some other areas of her therapies but because I have no choices and these appointments and therapists are allocated to me my hands are tied. I’m trying to change this.

In addition to this Chloe’s AFOs (her leg braces) have stopped fitting, they started being a problem about 2 months ago. Problem is, the state will only fund one pair every 9-12 Months….you know, because it’s not like little kids feet grow or anything? These AFOs are about $2000 a go!

So I fight! An in an interesting turn of events I recently had the opportunity to talk with my local member of parliament! I had actually written an email (that was drafted and not yet sent) to my federal member when I got a buzz on our intercom. She was door knocking the local area and asking if people had any issues. My reply, ‘Actually, yes, yes I do have some issues, would you like to come in?’

So in she came and I bombarded her with my rant for nearly an hour! Jump forward to 2 weeks later and I get a call from the Carers QLD line for Better Start Funding (the federally funded money that carers are allocated to access services they need for intervention – something I’ve been struggling to get due to SLOS not being listed) and an email and phone call from the Director of Paediatric Clinical Services at our local hospital (who can fund a new pair of AFOs for Chloe).

Win win! That’s why I tell people, if you are having trouble with issues that affect the community/family, then get onto the local MP. They are there to help us after all. So hopefully now, with a very particular letter from our great paediatrician we will get Better Start funding. And an appointment in the next week the hospital Clinical director and he will complete the paperwork to fund Chloe’s new AFOs!

Guess who gets my vote at the next election!!

It’s been a busy time. Add to this some exciting news that since Chloe has settled into daycare and absolutely loves it, I’m going back to work full time next year teaching. I’m so thrilled as I was offered a permanent position at a great school just near where we live. It’s really an answer to prayer and perseverance as I’ve applied at this school three times! I can’t wait to get back into the classroom, it will be busy, with both Mike and I working full time, and will bring new stresses in and alleviate some other stresses, but it’s time to step out in faith. I don’t want to live in ‘special needs world’ and when you have a child with extra needs it’s so easy to do. One doctor appointment….to therapy….to doctor…. it’s ongoing.

 

The fog

It’s like driving through the fog at night. Now I don’t know if this is correct, but I think I remember being told that when you drive through the fog at night you shouldn’t put your high beam lights on. I know if you do this it’s incredibly hard to see very much. But if you put them on low beam you are able to see further in the distance. Thick fog is so hard to navigate. It’s scary when you can’t see where the oncoming lights are coming from. Or when to turn the wheel on the car so you can stay on the road. Thick fog clouds your vision, it gets in your way.

I love a good metaphor. Being Chloe’s mum is sometimes like driving in the fog. It’s hard to see to the distance, it’s hard to know or guess, or even anticipate what is around the corner. If I try hard, and squint to see too far in the future it just becomes much harder to see up close, and I lose the clarity of being in the here and now. It’s like you need to just leave the lights low, don’t try too hard to see to far, and concentrate on following that white line on the side of the road so you can see the twists and turns. Just concentrate on Chloe, what she is doing right now and just follow that lead.

It’s been about two years since I started writing this blog, two years since we first heard ‘her heart looks hypoplastic’ and I had to ask what that meant! Now I’m a walking dictionary of cardiac terms, SLOS terms…. I no longer ask what that means! Chloe is approaching her second birthday in about two months. We as a family have been living with her diagnosis of SLOS for about 20 months. Close to 2 years.

I have no idea what the normal is for ‘other’ people, but I think the fog is finally clearing. Our family have been navigating this journey through the fog for the last two years. We’ve had so many unknowns, from diagnosis, to heart surgeries. From TET spells, and blue! To pink and full of life. The fog has been thick, and at times, so thick I’ve had to stand still. If I was driving I would have had to stop the car. Unable to see the next corner or bump in the road. I’ve had to sit and wait and for it to lift.

One time that I remember like this was her unexpected stay in PICU (Paediatric Intensive Care) after she failed to breathe up on her own after he catheter procedure. I do not like the unexpected. This was unexpected. It was a very long wait to find out what was happening and lovely stay overnight in the parent’s rooms on the 8th floor of the hospital while Chloe slept restlessly on oxygen in PICU, I’ll admit, I panicked that night. Mike had to go home and I stayed up the hospital. I was prepared for a night stay (what parent like me doesn’t pack a ‘just in case bag’?) but I wasn’t mentally prepared for the PICU and the single digit Oxygen SATS. It was a long night. But that’s another blog.

Now that the fog is clearing we are finding a routine and rhythm to parenting Chloe. I’m learning much more to surrender to her SLOS in a sense. I can’t control it, yet I don’t want it to control me either. I don’t want it to define our family and yet in every sense of that it has too. It’s the only way to live with it I think. It’s like a great Dr Phil (!!) quote, ‘you can’t change what you don’t acknowledge’. You can’t live in denial about this stuff, it’s important to acknowledge the battles you have been through, and prepare for the ones ahead, and find the balance between acceptance and moving forward, but also living in the present. It’s a work in progress here, but I think we’re getting there.

We’ve reached a kind of normal that would only be normal for many special needs parents. I don’t talk about the day to day much in my ‘regular’ life. And I think people are often surprised as I don’t always divulge most of what this entails.

Things like Chloe’s chronic constipation. It’s a vicious cycle with her eating issues. I medicate her to ‘help her go’ but that doesn’t always go to plan so sometimes we have to help that along… I’ll let you use your imagination.

Or the food strikes. There are times when Chloe eats….and times when she doesn’t. And times when she eats, and times when she doesn’t! But I’m learning that there is nothing I can do about that. In saying that, her imperfect diet doesn’t seem to affect her energy or even her latest blood test (which was excellent).

Or her speech, or signing. Chloe does a lot of imitating of words but doesn’t consistently use words to say anything. This is a work in progress. She still signs a few words but not many. Chloe is not like a regular two year old, who might come ask for a ‘drink mummy’ or  understand if you say ‘go get your shoes we’re going to the park’.

But finally, we’ve reached some kind of strange routine with her, where getting up in the morning and making her cocktail of milk (milk, pediasure, cholesterol and lactulose) is my normal. Where making her aspirin with her brekky and giving her the syringe to suck it out of is my kind of normal (she loves aspirin and will often sign ‘more’ after having her 1ml). Where helping her to do a ‘number 2’ is my sort of normal. Where giving her melatonin (and hoping and praying that it helps her sleep that night) is normal. But that staying up all night til 3 or 4am is a regular occurrence and traipsing back and forth to her room playing Peppa Pig or In the Night Garden on the iPad at 2am is just run of the mill here. Where meltdowns are imminent in the shops or library and putting your feet (even in shoes) on or near sand is possibly the worse thing I could ever make her do. Where 2 mouthfuls of yummy yogurt is enough and signing ‘finished’ when you have barely started eating is just how it goes.

Where phone calls and letters trying to fight for a better start for her, for funding for therapy is just always on my list of things to do. Having the paediatrician’s mobile and email and in my ‘most called’ list on my phone is just how it is.

it’s just a routine, a kind of strange but normal routine. And in the middle of this we carry on with regular stuff! Like work and church and picnics in the park. And it’s like the fog is lifted and we are now just ‘here’. There’s a certain level of anticipation about how things are going to be from one to the next, and yet another level of anxious anticipation as you don’t want to squint too far ahead in the future and think of impending surgeries, possible gastrostomy (feeding tubes) or sleep studies and hospital stays. There out there….but it’s just easier to acknowledge their presence and carry on with our little routine.

And in typical Chloe fashion she never ceases to amaze. Since my last blog Chloe has started walking quite confidently. She’s quite the cheeky monkey in the shops, not wanting to be in the pram and would much rather have me chase her everywhere! She loves daycare and has all her carers wrapped around her little finger and knows it! She loves crayons and is actually quite obsessed by them. She has signed ‘food’ in a manner of asking and actually eating then asked for ‘more food’ through her signs, and actually eaten! I sit there at times and I think, ‘wow, who is this child?’ She’s so full of energy, she loves to explore. She lets go of my hand at daycare and knows exactly where to find her favourite things. Mini (our dog) continues to be one of her favourite play toys! And it’s the one word she actually says very clearly, ‘doggie, doggie’!

She’s doing so amazing. And even though I want to say how great and freeing it is to finally be out of the fog and into the clear, I know only too well that it’s not always going to be like that. I don’t say it to be negative, it’s just the truth, the truth about being a special needs parent. You find your groove, your rhythm, you learn to surrender to the things you can’t control and live with it, and the future looks great, but there’s always that little niggle in the back in your mind. But for some reason you live with that too.