Before VS After

 

Omg this.

THIS quote!

I can not put it any better than that. And I imagine a lot of people can relate it to a moment in their lives.

Dixie was my moment. My life altering moment. And she has changed everything about the life I lived before her. The way I see things. What’s important.

There is almost certainly some kind of divide in your life when you move along into motherhood. 

Things initially turn upside down as you adjust to life as a three. 

Gone are the days of last minute plans or drinks out when the mood takes you. Your priorities change. In its place is a life that involves lost sleep, a dwindling income, less socialising. 

Your child is suddenly number one and you often feel like you lose some of yourself as your needs are put on the back burner. 

But it’s worth every lost minute. 

I think when you have a child with complex needs, that divide becomes almost a gulf. It is such a significant change your life becomes unrecognisable to how it was.

There is definitely a sense of a before me and an after me. In pretty much every aspect.

The before me took the T9M information booklet given to me on diagnosis day, and decided to pick out the most positive pieces and decide Dixie would be all of those things.

The after me realised Dixie would write her own information booklet. She would set her own goals.

The before me used Facebook purely for entertainment. To post pictures, keep in touch with friends afar and most importantly stalk!! 

I never came across the pages following children with rare disabilities, common disabilities, health conditions, cancer! I never thought to go looking. It never crossed my mind that Facebook could also be a huge support network for some. A lifeline even.

The after me MADE a Facebook page. How ironic. I tentatively joined a couple of Facebook groups and found my first taste of that support. 

I found the charity UNIQUE (who incidentally had put the info together about T9M which I had received on diagnosis day!) They put me in touch with other families and introduced me to a few support groups on Facebook. Yes. A lifeline.

The before me had a handful of friends. Those from work, some since becoming a mummy and some stragglers from my school days. 

The after me met and connected with a variety of parents. All walking similar paths. Some here physically, some virtually. All who keep me sane (ish). They are a mix of people that had I not had Dixie we would have never crossed paths. I’m so thankful for them.

The before me I like to think was a little bit silly. A little bit daft. Talking a mile a minute!! 

The after me is still that same silly girl. I just don’t have a lot of opportunity to let her out anymore. I spend so much of my time having to be serious. Make big decisions. 

The before me was relatively carefree. I had worries of course. But nothing hugely significant and things most parents can relate too.

The after me still has all those same worries. Plus a huge dollop of ‘this is too much worry’on top. With a cherry. And a flake.

The before me took a lot for granted. That milestones would be a given, that friendships would withstand tough times. That my life would be ‘normal’.

The after me realised that there is no such thing as normal. That friendships often dwindle, that milestones aren’t met. That life can be far from average.

The before me had it pretty easy. I didn’t appreciate at the time how easy. I had child free nights and time to be me again. Not mummy. Not carer. 

The after me hasn’t had a child free night in a year. There isn’t one even on the horizon. I can’t remember how it feels to be free of worry. Free of anxiety.

The before me was a little bit selfish. A little bit naive to the suffering  that some families faced. The battles. The fights. Every day.

The after me lives those fights too.  And I will continue to fight. And continue to grow in strength to get the very best support. And the very best care for my girl.

The before me was looking forward to the future. To see how Maisy would grow and who she would become.

The after me is scared of the future and what it will bring. But also excited to see both my girls reach their full potential.

My pre-Dixie life was a breeze in comparison to now. Im not saying that my worries were insignificant. Just that mostly the things that ate my brain passed as Maisy got older and I got wiser.

My post-Dixie life is a whirlwind. My emotions are up and down like a yoyo. And I worry all the time. I don’t see a time that will EVER stop! I didn’t think hospital appointments and therapies were a lifestyle. Turns out it’s ours. 

I can’t ever go back to the person I was before Dixie. My eyes have been opened so wide because of her, and ultimately I’m grateful for that. Because I would have missed out on so much beauty. So much strength. 

Dixie in a nutshell!

Let’s begin 2016 with a catch up.

Grab a cuppa, or a coffee; hell grab a wine. Go grab a seat and make it comfy while I bring you up to date with all things Dixie doo!

First up, the biggy. Her heart.

It was established at her initial echo at 2 days old, that Dixie has two heart abnormalities. A VSD or a hole for us non-medical folk. And pulmonary stenosis AKA a tightened/thinned heart valve.

Now as bad as these might sound, the two problems helped each other. They corrected enough that for the first year her heart looked lovely & balanced.

If the cardiologist could have predicted the likely path that Dixie’s heart would have followed, it would have been to see the hole close and at some point a possible keyhole surgery to open up the valve.

BUT. As this is Dixie, that wasn’t what was seen at a follow up echo last summer. In fact the hole had remained and the valve had opened up quite a bit by itself. Sounds good in theory but not so much in reality. And a consequence of this is my girls heart is now enlarged on the left hand side. Balanced no more 😦

Outlook this year is to check back in about four months. There is a chance she may need open heart surgery to repair the hole but I’m hoping it will close at some point itself. Or that she continues to stay well as it is.

Second. Her swallow.

Bit of a rollercoaster this was. One of my many fears was the feeding tube. I’m not even sure why but it was a big worry. And as soon as her feeding troubles were taken seriously, I had a mummy feeling that she would end up with a tube.

I couldn’t have predicted how it would come to be though! That an emergency hernia repair operation would lead to a ‘temporary’ mic-key button being placed to secure the stomach.

The surgeon wanting to remove said mic-key button three months later but Dr community asking for it to remain till her second video swallow.

And ultimately her failing the video swallow on fluid. And when I say fail I mean she wasnt safe to swallow liquid. Unfortunately both thin & thickened showed some silent aspiration and so it was deemed safer to stop all fluid via mouth. After all the button was already in place. And I didn’t want to risk fluid on her lungs.

So was it fate? Stick a gastrostomy button in Dixie, give me six months to get used to looking after it before training me to use it?? I often wonder….!!

Anyway no matter the whys and the whats. She now has a fancy little button that I use for all her fluids, meds & a calorie boost.

It’s not scary. And (hopefully) isn’t forever!

Third. Her eyes.

They were initially a few problems there. Mostly it was delayed visual maturation, meaning she wasn’t seeing what she should for her age.

Other things came up along the way. Her pupils being very small, a squint, her left eye being smaller, nystagmus. To be honest we seemed to be told a new problem every visit. And so we just glided along in limbo eye land.

Our last appointment however, was pretty damn good. And it seems the little lady is just far sighted. Again we remain under review so never say never.

Fourth. Miscellaneous health.

I thought I would band her minor ailments together. She is also being treated for reflux, constipation and eczema. And the meds help muchly.

Fifth. Development.

I don’t want to sit here and list Dixie’s can’ts and her can do’s. I have to do that enough already with the professionals. I will say that her development is patchy, and that when she’s in the ‘mood’ to cooperate that it’s clear that she can do more than you think.

She’s clever. She’s stubborn. And yes she is taking her time with the stuff that this mama bear is waiting very impatiently for her to achieve. But that’s something I need to get over.

So that’s a Dixie summary wrapped up nicely in a nutshell. Hope you made it to the end 😉