A progress report….

Sometimes it’s hard to believe that Chloe is two and a half.

The days…turn into weeks…into months, and they seem to fly past. Probably because the days and nights often merge in to one these days!

I took Chloe for her checkup with our amazing paediatrician this week.

She’s almost 12kgs, 85cm tall (or short depending on how you look at it) and her head, albeit small at 45cm is growing slowly. In some ways I am very grateful for the small head circumference because that has enabled us to access government funding for therapies.

Our paediatrician continues to be really impressed with Chloe’s progress and predicts that she is likely around 6 months behind developmentally in many areas, and probably 12 months behind in others.

Which is as I suspected.

She sure is a whirlwind though! I refer to her as cyclone Chloe.

She destroyed his rooms…spreading toys all over the place and then climbed up on the chair and swung her legs back and forth with an expectant look as if to say, ‘well, hurry up. Let’s get this check up over!’ Cheeky monkey!

And, at the end she ran up to him and gave him a cuddle! Too cute for words.

Following on from that, we visited our local politician. She has helped us immensely with gaining the funding we needed for Chloe’s therapies and her AFOs last year. So, I decided to contact her about supporting the upcoming event I’m coordinating called Two Feet and a Heartbeat. A charity walk we’re doing to raise funds for Heartkids.http://www.twofeetandaheartbeat.org.au/

She of course responded offering any help she could, along with a cheque donating $200 to the cause. We had a photo shoot together with the huge cheque, then sat in her office, of which Cyclone Chloe made herself at home! Because why wouldn’t you want to do that? She even went around behind the desk and started to hit the keys on her computer! Oh dear! Then she sits up to the desk swings her legs over the chair (just like at the doctor’s office) and has that look on her face again! She sure is a character!

And then in true Chloe fashion runs around the rest of the office, pressing her face up against the glass and leaving her mark (her snot!) all over their glass sliding doors! I did apologise profusely, but what could I do? And then as if to make it all better she gives Ros (the local politician) a huge cuddle and runs out the door to the car!

She may be small but she sure has a lot of personality.

We are now researching and considering getting the help of a behavioural specialist to support us in dealing with Chloe’s meltdowns and her, shall we say, ‘stubborn’ personality! We are also going to attend a feeding and speech clinic at the local hospital.

Although we seem to have got Chloe this far with eating and drinking, she eats such a limited diet that is is beginning to affect her well being (I believe) and we continue to find feeding her a real challenge. In fact, the reality is, that this time two years ago I struggled to get her to drink bottles, I now continue to struggle to get her to eat any food, not much has changed.

And yet, by some miracle, she does eat and drink enough to get by and grow!

She really does surprise and exceed our expectations. Can I just say that although I witness this little miracle each and every day, and I’m blessed because of her strength and character, that it doesn’t make our life any easier? Dealing with chronic health conditions on a daily basis is exhausting and tiring, mentally and physically, and yes, emotionally. It’s not an easy journey, ever. Seriously, ever. Each day can often feel like a battle, some you win, some you lose.

A final story for you. We’ve really been struggling with Chloe’s lack of sleep these last few weeks. Just the other night, bedtime was a huge fail, that started with being told that she could not put dolly in the bath! Following this, was over an hour and a half of screaming and crying that went right through bath time, getting dressed, taking medicine and then the complete refusal of reading a story and drinking a bottle. Our usual night time routine. She of course then refused to go in the cot, kicking and screaming and crying.

So, we gave in, got her up and let her play. We watched ‘In the Night Garden’, had some water, cuddled on the couch. Then, out of the blue, she climbed up on my lap and planted a huge wet kiss on my lips! MWAH! I laughed. She’s never done that before! Because I laughed she did it again, and again and again. Was unbelievably cute. Then she looked at me and said ‘mama’. Wow…. I’ve never heard that intentionally either. Kisses and mama.

She said ‘mama’. I’ve been waiting a long time to hear those words (dare I mention though that directly after the kisses and the mama she slapped me across the face?)

Funny how a toddler can push you to your breaking point, and then do something so adorable and loving that reminds you how much you love them. I think God designed them this way for a reason!

Dear Smith-Lemli-Optiz Syndrome

To my daughter’s syndrome,

I’m pretty mad at you. Well, in fact, that would be a huge understatement. I’m not mad. I’m furious. I’m angry. I’d like a punch a few walls, smash a few plates… I’m furious.

Yep, that’s how I feel about you.

I’m not endeared to you, I don’t thank you for enriching my life. I’m not happy about any part of you. You make me mad. You make me mad for all the children you’ve taken, and you make me mad for making my daughter’s life difficult.

If you think I’m bitter, resentful… then you’re right. I am.

I see a lot of people ‘thanking’ their child’s health issues, thanking ‘it’ that it has made them a better mum, a better parent, a better person. Calling it a blessing. Nope. Not even for a second do I think that you are blessing.

I don’t think you have done this for me at all. If anything, I’m probably less tolerant, less understanding and less sympathetic since you came into our lives.

Perhaps I’m more educated, less ignorant, more aware. Perhaps I’m in a new world where I understand parenting difficulties, perhaps you have made me a better teacher, but I’m not thankful to you in the slightest.

You have turned our lives upside down. You have taken things from us. Materialistic things yes, like our house, our cars… we’ve turned our lives upside down so we can better cater to your needs. We’ve lost jobs, moved. We’ve spent a lot of money because of you!

Smith-Lemli-Optiz syndrome, I can think of nothing that makes me want to be grateful to you.

Because I ask myself this question. Wouldn’t I be the person I am anyway? Becoming a parent changes you. Without you in our lives, I would have been changed, I would have had to become less selfish and more selfless. Less lazy, more active. I’d had have to give myself to another little person, a healthy little person. That little person would have changed me anyway, I didn’t need SLOS or a heart condition to make me a better person.

SLOS you are a cruel disease. You take normality out of our lives and replace it with obsessive behaviours. You replace it with meltdowns. The inability to go public places for fear of uncontrollable tantrums and screaming. And because you brought a heart condition with you, you bring a whole other realm of issues with you. Not just screaming meltdowns, but blue screaming meltdowns.

You have brought feeding trouble, slow growth…. therapies… trouble sleeping. You brought difficulty with communication… trouble with speaking.

You even brought sensory issues that stops our family enjoying the beach! We live on the Gold Coast for goodness sake.

Smith-Lemli-Optiz Syndrome, I hate you.

I refuse to be thankful to you for anything. So I’m going to try and look past you, over you and through you. I’m going to refuse your troubles, and soldier on. I refuse to think that you have brought anything but grief and trouble with you.

Why can I do this to you? Because I believe that without you, I would still have the crazy, cute Chloe left. She would still have her stubborn independent personality. She would still be thriving and growing. She would still push all my buttons and throw herself at me with a cuddle. If we took you out of the picture, I’d just be left with Chloe. Cute, blonde, blue eyed trouble! Mischievous. Adorable. Funny. Chloe would still just be Chloe without your troubles.

Honestly, Smith-Lemli-Optiz syndrome, I wish I’d never met you.

From me.