Ups & downs

We are just (hopefully) getting over our first lingering virus of the year. And it's summer!

I've always dreaded coming into the winter because of all the bugs and yet here we are going on two weeks of poorly-ness.

Illness for our Dixie means rapid weight loss. And when your goal is to fatten her up, the idea she's losing every day of illness is really frustrating.

Coughing runs the risk of her being sick. Which then turns into the worry of aspirating on the sick. This can be so dangerous for our little lady. If the liquid were to get on her lungs she could end up very poorly with something called aspiration pneumonia.

Illness also means a stop to her 'work outs'! No stander, no exercises and no therapy. Just a lot of lying around and sleeping it off. Yet again highly frustrating.

And this is the part that's a bit amazing. Considering all that has been going on with Dixie, she seems to have made a couple of small strides.

Even though she's only wanting to eat yoghurt, she has started taking her dummy out when she sees the yoghurt pot in anticipation for the food.

Not a big deal I hear you say!!!! But in our world it's pretty exciting.

You see before, she would forget her dummy was in her mouth and she would lean for the food without taking her dummy out. It means her understanding of small tasks like these are improving and she now realises she has to take out her dummy to be able to eat.

Proud mama.

A couple of days ago I had Dixie between my legs waiting for Maisy to finish school. She'd got restless in her pushchair and wanted to get off my lap too. I looped my arm under both of hers to support her upper body and she just locked her legs and stood. Yes stood. For several seconds at a time.

My heart was literally bursting out of my chest. Another school mum observed her too and made the comment that she'd never seen her do that!!

Happy mama!

So sickness, no therapy and a cough that sounds like a dog barking hasn't stopped my girl still making those small steps forward.

And to put a very big cherry on the top of the cake we got to take home Dixie's learning journal from nursery!

WOW!!!!!

I just never imagined her doing 'typical' things, but she is! And here's some of the pics to prove it…,,

Goodbye Hawthorn!

I can’t actually believe we are here. Dixie turning three soon is a bigger milestone than I ever imagined, as we are ‘graduating’ from Hawthorn. Our Tuesday refuge. 

We are at the beginning of the end. The little life we have comfortably grown over the past 2.5 years will very soon change forever. 

In some ways I feel ready to move on into the big bad world. But in others I want to hide away in our second home for a while longer. But no matter my feelings either way, the inevitable is that our place will be gone forever after tomorrow.

With this in mind I’ve been reflecting on our time spent there. The people that have passed through, the friends I have met and made. The staff that have become as much a part of my Hawthorn ‘family’ as the parents.

I still remember our first visit. I was so nervous as it was my first experience within a specialist setting. At almost five months old, Dixie was still a small baby so I wasn’t ready for the label that I thought going somewhere like that would give her.

Despite there being a waiting list, I managed to get a spot starting the very next day. I can remember wracking my brains, trying to think of an excuse to delay our place a little longer. I was expecting a few more months to get my head around it all.

And yet, here I was sitting in a room full of strangers. A room full of parents who were chatting and laughing. They were sharing cheese cake and making plans for a night out. I don’t even know what I expected but it wasn’t this warm environment. It was lovely. 

Before I could change my mind I said yes. And I can safely say that saying yes that day was the start of my healing. It was the beginning of a new chapter in our lives.

In the years I have been coming to Hawthorn, I have felt complete. I’ve made a support system that I could only dream of. I have laughed and I have cried. I have eaten my body weight in pizza and chocolate and I have discovered a strength I didn’t know I had.

Dixie has found it tougher than me, and separation has been difficult, but that’s where the wonderful staff come in. They want to help. They want you to have a break because they know you need it. 
I have relied on that place and the people inside it for so long, it’s going to be an adjustment for sure. 

When something is troubling me, I know I’ve ‘always got Tuesday’.

When I’m looking for guidance, in my mind ‘I’ve always got Tuesday’

When I’m dog tired and need grounding, I can revive cos I know ‘I’ve always got Tuesday’

But alas no more. 

It’s time for us to move on and let some other family benefit from such an amazing respite.

And if you’re that parent about to embark on a place like Hawthorn, do not hesitate. Grab it with both hands. 

It will change your life. Promise. 

Unsteady times ahead.


We’re a week in to the new year already and I can honestly say 2017 has fallen flat.

I tend to have a renewed sense of purpose moving into a new year. A clean slate. I’m usually full of fresh hope and big dreams. 

Don’t get me wrong, I’m not sad to say goodbye to last year. It was utter pants. It felt like a year of limbo. We didn’t plan. We didn’t relax. We had Dixie’s heart operation hanging over us for 8 of those months!

But the year ahead is a year of change for our family. And I’m not good with change.

I started thinking about it earlier this week after a catch up session with our portage worker. We only have a couple of months left with her before we start winding down our sessions and saying goodbye. Then we will be passed over to another educational team instead, ready for when Dixie starts school in September 2018. AKA next flipping year 😱

You see in five short months Dixie will turn 3. And with that we will say goodbye to Portage & our lovely Portage worker. A lady who has spent the last 18 months with our family, bringing her warmth and enthusiasm. Keeping us motivated.

I don’t want to say goodbye to her.

And along with turning 3, we will also say goodbye to Hawthorn. That place has been in our life since Dixie was 4 months old. I’m not sure I know how to do this without it. 

Hawthorn has been my backbone. My strength when I’ve felt low. And soon it will be no more for us. Even now as the weeks pass, more of our little Tuesday group are moving on. I don’t want to do this journey alone again.

I don’t want to say goodbye to it.

And the more I think about her turning 3, the more things come to mind.

She’s no where near walking! Nor standing or crawling. As she is getting older, she’s getting heavier and relies on me completely to move her around! 

My neck and shoulders are already starting to feel it. How long can I carry her before the pain or damage to me becomes permanent?

What happens when she outgrows her pushchair??

And she still has no words. She’s becoming increasingly frustrated that she’s unable to communicate. And so are we. How much easier it would be for her to tell us how she’s feels or what she wants!

I find it exhausting. 

2 years and seven months. Day in day out, moving her from room to room. From one position to the next. Trying so desperately to understand what she wants or consoling her when I don’t know what’s wrong.

And on and on my worries continue….

Now some of you might read this and think I should thank my lucky stars that Dixie is even here. That she has gone through major surgery twice in her short life and yet continued to show her strength.

And yes I am thankful. And my girl really is what keeps us strong as a family. She’s so resilient and just takes whatever life has to throw at her. But I still can’t help that sadness sneak in. That wonder of what she would be like today if not for that extra chromosome!

I wonder how it would feel to be just another mummy. Instead of being a carer.

But above and beyond any of that, I want the best for her and seeing her grow in size but not development is becoming harder each month that rolls by.

I know underneath my uncertainty about this coming year, and the sadness that occasionally punches me in the chest, that we will be alright. 

Maybe these changes will lead us onto a path for something else. Whatever happens or where we go, we will still continue on. One foot in front of the other.

She’s my fighter. Now I need to be hers.
💗💗💗

Let’s talk about Anxiety

Yesterday was World Mental Health day and it got me thinking. There is still part of my story I have yet to share.

My anxiety.

When I started this blog I hadn’t addressed it. I hadn’t realised I had it, and it hadn’t peaked. Over a year later I can see things a little clearer.

I think in light of yesterday, it’s time for me to talk openly about this aspect of me. So I will try.

I guess as I got older I became a bit of a worrier. Not in a debilitating type of way, but would get extremely nervous about things that many seemed to just take in their stride. 

Then I had Maisy and suddenly I worried about everything. If she was poorly, I was worried about missing something. I worried she would choke on her food so cut things up really small or didn’t allow her certain foods. I worried if she ran too fast she’d fall and really hurt herself. I hated her on scooters, bikes, falling off slides or swings.

When Dixie came along I felt ready to be a mum all over again. Only we were hit by a huge curveball pretty much straight away. Dixie wasn’t your typical newborn. The information booklet about her condition didn’t help calm me and I soon found myself with a whole new set of worries.

I’m not quite sure how I got through those first 18 months looking back. I think I just plowed on. One foot in front of the other type of thing.

Then things sort of came to a head last November. After a few people around me had noticed my anxiety peaking, they urged me to try some counselling. I surprised myself by signing up for five 1 hour sessions. 

I enjoyed just talking to someone who didn’t know me. I enjoyed getting an hour to focus just on me. Only afterwards did I realise that I was detached when I was talking. My emotions didn’t ebb into my words.

Into the new year and I was doing ok again. I think a lot of it was down to it being a fresh year. A time for me to make some promises to myself which of course I didn’t keep. 

Then the headaches started. They plagued me every day. They sucked out my energy. These headaches turned into migraines and it was at this point, following a migraine that had left my left arm numb with pins & needles, that I decided to see a doctor.

We chatted for a while about my headaches and I can remember just bursting into tears. As I continued talking it was like I was admitting it to myself for the first time too. I’d never in my life met this doctor before, and yet in that moment all my fears, and failures came tumbling out of my mouth. 

I told him about Dixie. How she was nearly 2 and I couldn’t bear to go shopping in the baby aisle for her gifts. About how I wish she would meet just one big milestone. How I spent so much time chasing up professionals and equipment. How there was a chance she might have two upcoming surgeries. 

I told him how I couldn’t sleep because my mind was busy working overtime. How I couldn’t shut my brain down. How I always felt on edge and never relaxed. 

I told him I wished things were different.

I think that day was a turning point for me. I’d finally admitted that my anxiety was becoming too much and this doctor listened. He didn’t judge or make me feel embarrassed.

In some ways he counselled me. Made me realise anyone with my life would struggle too. That things were hard.

With the help of this good doctor and a couple of different medications, I am happy to say I feel much better. My headaches are minimal and my nerves and anxiety are much more manageable.

I never imagined this would be me. BUT I also never imagined my life would ever get this hard. 

But I’m ok. And I’m not ashamed to say I got a little bit of help. And I know one day I will feel like me again 💗

Waiting…

Always waiting.

Waiting for an appointment with one of her specialists.

Waiting for a therapy to begin.

Waiting for a returned call.

Waiting for a test.

Waiting for test results.

Waiting for equipment to come.

Always waiting for something. Always counting down the days.

And now we are on our biggest wait of all. Her open heart surgery. And it’s becoming really tough.

We found out at the end of May that the board of surgeons had agreed with Dixie’s cardiologist, that the best way forward was surgery.

We waited until the end of July to meet with the heart team. We were ushered first into a little room with one of the heart nurses. And even though he was a great resource of information my mind was blank.

I listened to him talk about how she needed to be given the ok from a dentist before they would operate. How if she got even a sniffle I would need to take her to the doctors, and call and let them know. 

I listened to him talk about what clothes to bring for her, how she wouldn’t be able to wear anything that goes over her head.

I listened to him talk about all the tubes she would have in following the operation. How it might look scary to us. How she would have wires attached to her heart wall that would come out of her chest to act as a pacemaker should she need it.

I listened to him talk about Intensive care and how I wouldn’t be allowed to stay with her overnight on there. But that I would have a room in the hospital. Somewhere. 

I listened as he told me that the first 24-48 hours she would be sedated but by day three she would start to be taken off everything. 

I listened as he told me to rest in those early days whilst she was. To look after myself because I would need all my energy to care for her in recovery. 

I listened to him talk about how to hold her after surgery. How to pick her up. How to practise picking her up this way at home.

As he talked and we listened, I felt like he was talking about someone else. I felt detached because the thought of her actually going through this was incomprehensible to me at that moment.

Finally her surgeon was ready to speak to us and we moved to another room.

She mostly talked about the mechanics of the heart and how Dixie’s wasn’t efficient because of the way the blood shunted through the hole. 

She talked about risks. And success rates. She talked about the operation being 4-6 hours but could be anything up to 7 or 8. She talked about a 7-10 day hospital stay.

She talked about the operation wait time being up to 18 weeks, but generally shorter.

And now here we are.

Waiting again. 

Waiting for the postman every morning, or to get that call. We are all in constant limbo. Holidays have been cancelled and only last minute plans can be made. 

For someone not going through this, I’m sure it’s hard to understand how it can consume you. How the longer you wait, the more time you have to think about the risks.

But ultimately we can’t prepare for it. So we just try our best to get on with our days and weeks. Even though it’s hanging over us all the time.

There’s nothing we can do but continue to wait…

Dixie doo is TWO!!!

This day two years ago we were getting ready to meet Dixie for the very first time.

We left early in the morning, dropped off Maisy at her Aunties house and headed to the hospital for my planned Caesarean.

I was a bag of emotions. Excited, scared, nervous and full of anticipation. I was 37 weeks & 4 days.

This hadn’t been in my plan. An early evacuation. A section. But sometimes things are just out of your control. Simple as that.

I had found out at 26 weeks that I had gestational diabetes. Huge shock. I had regular scans and appointments throughout the rest of my pregnancy. 

At my final growth scan, a day short of 36 weeks, I was told my Dixie was small. In four weeks she had gained less than a pound. 

And to add to everything. Dixie was breech!

I went back a week later for another scan. She hadn’t gained any weight and was still very comfy in a breech position.

The decision was made there and then that she needed to come out. And soon. I was given a choice of dates for the following week to have my section. It was kind of surreal, like I was choosing a date to get my hair done…!

I chose a date five days later.

Those five days went in a haze. I re-packed my hospital bag with tiny baby clothes and big pants! I made arrangements for Maisy to stay with my parents and daddy L arranged to take a day or two off work.

Then here we were. Tuesday 3rd June. My soon to be born princesses birthday. 

At the hospital we were talked through everything. I hadn’t been able to have the steroids to help Dixies lungs due to the diabetes so we knew there was a small chance she might have difficulty breathing.

A cot was made available in NICU (just in case) and in a blur of drugs and adrenaline, I was laid in theatre with numb legs, a shaking body and two doctors rummaging around in my uterus!

10.19am. Time stopped still as we heard Dixie cry for the first time. She was checked over right away. No problems breathing! Phew! She was cleaned & weighed and our 4lb 10oz bundle of gorgeousness was handed to us.


I remember just looking at her and feeling such relief that she was here. She was ok. She was a scrawny little thing, but she was beautiful. She was mine.

She had this crazy top gum that was really prominent. And a teeny chin. Her hair was stuck up with a flash of blonde through the dark mess. And she was so tiny. Like a doll.

I will never forget our first hours. Our first day. Smiling as I watched Daddy L fumbling around trying to dress our teeny girl in her first baby vest and sleepsuit that were miles too big. 

I will never forget that first day as I watched my biggest girl kiss and cuddle her baby sister for the first time. That first day proud grandparents held Dixie without any underlying worry.


I will forever cherish that time. Because it was all I got before our world was changed forever. 

Before the doctor found the first sign all was not well. A heart murmur at a day old.

Before I was oblivious to what the future would hold. 

Before I had to become an expert on Trisomy 9 Mosaic. 

Before I became my daughters carer as well as her mummy.

Fast forward two years and my goodness what a ride. 

Two years of uncertainty, and of worry. 

Two years of learning a new way of living.
 
But two years of a joy I never even knew existed.

My beautiful 21lb bundle of crazy hair and long limbs is finally two.

TWO!!!!!

In some ways I feel like those two years have been the longest of my life, and that I can’t imagine our little world being any other way. In other ways it only feels like minutes ago that I held her for the first time!

I know Dixie has many more hurdles to face in the coming years, and we will be right beside her.

We love you Miss Dixie! Happy birthday 🎂🎉🎈

A bump in the road.

  
So, a funny thing happened this weekend. And when I say funny, I actually mean shit.

We had a cardiology review for Dixie. Which was odd in itself as we weren’t due to be seen till May!

Anyhoo, so off we go. Daddy L is in tow as its a Saturday appointment! 

We have the usual chat with the lovely cardiologist. She looks at Dixie’s last few weights and I explain the recent weight loss was down to a bout of illness. 

She asks the usual questions. Is she breathless? Does she sweat profusely? We shake our heads. So far so good.

She performs the echo and manages to get some pretty decent pictures of Dixie’s heart. I’m feeling nervous as always. Then she finishes up.

‘The heart is still the same’ she says and inside I breathe a sigh of relief. Phew. As much as I hate limbo land, I’m comfortable living there when it comes to her heart.

We talk some more. She shows us the pictures and explains what we are looking at. The left side is still having to work harder and as a result is still enlarged. The hole although small is having a moderate amount of blood flow going through it. 

Then she kind of drops a bombshell. Although not really a bombshell, but I’m still taken off guard since we’ve been having conversations like this since Dixie was 6 weeks old. 

Only today’s conversation went a little differently.

‘I think it’s time to start thinking about closing the hole….surgically’ she says.

Open heart surgery. Open. Heart. Surgery.

Shit…

I’m nodding my head but I’m just letting the words sink in. I look across at daddy L and he’s nodding his head too. 

She’s still talking, I’m still listening. And I agree with everything she is saying. 

How many times can we keep going back, having the same conversations, seeing the same little heart working too hard?

How many times do we need to wonder how much this little overworked heart is impacting her life? Burning up her calories? Taking her energy?

The thing is. We will never know until her heart is fixed. And it’s trying so hard to fix itself. But it’s just not able to do it by itself.

So we agree.

Hours later I lay there feeling like it had all just been a dream. The idea that my precious baby girl could be back in hospital having operation number 2. It’s terrifying.

I’m stuck again between ‘why her?’ And ‘pull yourself together woman’!! It’s a place I visit often. 

I hate it.

I’m relieved the appointment landed on a Saturday. I’m relieved Daddy L came along with his man logic of ‘a heart without a hole is better than one with a hole isn’t it?’ Surgery for him is a no brainer. 

But I’m the momma bear. I worry about the risks. I worry we will put her through a big operation and that it won’t make any difference to her life. 

I worry about the practicalities of a hospital stay. The loneliness of it. I worry about being away from Maisy. About Dixie’s recovery. 

I just worry. 

But then again. How much is her heart holding her back from having the best and most fulfilling life? Now the subject has been broached and the recommendations have been made…

I need to know the answer to that.

So I’m scared, but I trust her doctor. And when her heart pictures make it to a meeting of surgeons and other cardiologists, I also trust that they will have Dixie’s best interests when they decide for sure that surgery is what is best.

It could change her life.

With that in mind, what choice is it really??

And so until then. We wait.

  

Milestones, Schmilestones

I just got one of THOSE emails. 

You know the ones that are congratulating you on your child moving onto the next milestone. The ones from the baby shops that are really just trying to promote their equipment and encourage you to buy it.

Every one is a big fat slap of reality. Take that mummy. You’re child is sooooooo unbelievably behind, I think I will just remind you of just how far every few months.

And I will also make you so mad at the email that you will delete it before you have a chance to unsubscribe. So we will just continue to send them.

And we will always send them on one of your bad days.

Or something like that!!

Milestones are always a worry. A concern. Something you think about as soon as your baby is born. There’s the mummy competitions and the strangers asking seemingly innocent questions.

No matter your child’s abilities, whether they be born with additional needs or not, milestones will always eat your brain.

But for us. The mummies whose children aren’t developing typically. Milestones are just something we try to push aside. To forget about. Because they are a constant reminder of how different are babies are.

It’s the same as the Ages and Stages questionnaires.

I got sent one rather innocently in the post for Dixie’s 8-10 month review. What the actual hell?? No parent should have to read those questions when your child is known to be 50% delayed. No parent.

I opened it up and peeked at that first page. Like a horrible accident I had to look but I didn’t want to. 

And then I bawled.

I had a conversation with the HV following it and she admitted it was a mistake and that she would bring one for a younger child.

And so she came. And did as she promised, bringing one for a 6 month old baby instead. And as she asked question after question, and I continued to answer no, she started to look a little uncomfortable. So ridiculously I threw in a few yes answers. Just so she wouldn’t feel sorry for us.

As I sobbed later I began to question what the point of it was in the first place. All it had achieved was made our HV uncomfortable and make me feel a little bit shit.

I can imagine she just got back to the office and shredded it!

I understand the point of these for other children. But not when they are already diagnosed. And everybody already knows where they are developmentally. 

You see. I like to live in Dixieland most of the time. I don’t want to remember when Maisy did this, or did that. I don’t want a questionnaire to come through my door telling me everything they expect of Dixie.

But sometimes, it’s really flipping hard to forget.

Here in Dixieland inchstones are the new milestones. We go slowly. Sometimes so slowly it might take somebody else to notice the difference. But a difference all the same. 

An inchstone is doing ‘so big’ and seeing the understanding on her face as she smiles and unclamps her hands so you can push her arms into the air. And that laugh!

An inchstone is singing row row your boat, stopping momentarily distracted and her communicating in her noises to let you know it’s not ok to stop and she wants to go again.

An inchstone is grabbing the toothbrush and putting it to her teeth. It’s pulling small objects out of a box when asked. It’s holding her legs up in the air while you grab all her nappy change stuff.

An inchstone is her making new sounds that are more like a word than a noise.

An inchstone will be when we get her feet measured for her first pair of shoes even though they won’t get dirty, or the tread worn.

She has so many of these little inchstones that I have to remind myself that these are huge progress for her. Huge.

And I hope one day they come together to make a milestone. One of the big ones.

I’ve finally began to realise that in our case, she’s not just gonna sit one day for me. We’re gonna have days she will sit and other days (or weeks) where she won’t. She’s not just gonna take her first steps after cruising furniture for a month or two. It may take years.

One day I hope I’m posting these milestones with pride. One day I hope she will sit consistency. That she will stand fully and toddle around furniture. Maybe even take some independent steps.

Till then. We will just keep celebrating her inchstones

  

A wobble day!

 

I was having an ’emotional’ wobble day today.

You know the kind. When you worry you’re not doing something right. That you must be failing because nothing is coming together.

I was singing the same old nursery rhymes, doing the same actions. Asking Dixie the same old questions. Are you clapping Dixie? Where’s your nose? Can you poke out your tongue? Look at mummy banging on the tray. Can you? 

Nothing but blank stares or a soft smile. No copying with the claps or the banging of the tray. And that is her usual response. On my wobble days I find it hard!

Nevertheless I pushed it down deep and carried on.

We moved onto some floor time. Some sitting. Only today that resulted in Dixie forcing herself backwards. Again.

I tried several more times. With her favourite toys, me sitting behind her, her sitting against the sofa. Every time she forced herself backward. Something  I thought we’d got past.

Onto tummy time. I was already prepared for the frustration and tears as we’ve had it for the past year. Only this time she was immediately pushing herself onto her side to roll back. Tummy time failure. We repeated but it happened again. We gave up.

A few minutes rest and we attempted some supported standing. Only her knees didn’t  want to straighten. She bounced happily up and down but refused to bear any weight at all. 

Nevertheless I pushed it down deep and carried on.

I decided to have a change of scenery and moved her into the kitchen in her super duper chair. I gave her some dissolvable corn snacks to practise hand to mouth and chewing. 

She moved to pick up the snack and recoiled. She pulled her hand back and rapidly blinked her eyes. I know those signs. She wasn’t happy with the sensation of touching the snack. I didn’t get it. She’s done great with these before. I tried again. Same thing happened. She wouldn’t even pick it up. 

I wanted to push it down deep and carry on but instead out slipped a tear. 

It suddenly all felt pointless. I didn’t see any progress in that moment. I just saw regression. 

On my wobble days, I feel that we’re being left far far behind. I can see the progress of other children but things go so slowly in our little world. 

I want to be the one to tell the world about a huge milestone, or even a small stepping stone. It makes me wonder sometimes whether it’s me. Am I doing something wrong.

She conquers. She regresses back. That’s our cycle.

On my wobble days I feel cheated. Cheated that I’ve already seen her sit unassisted only now she won’t. I’ve felt her bear weight. And once. Just once. She poked her tongue between her teeth very slightly when I poked out mine.

Those moments were amazing. They made all the stress, the struggle, the time and the disappointments absolutely worth it.

And then days like today happen and all those happy thoughts and aspirations for the future crumble. 

These are the hard days of being a mummy of a special unique little lady. The ones that I’m sure someone else could do a better job.

I’m supposed to be a warrior mum. A dragon mamma; the one building her up. Making her feel she can do it. Who else will do that for her?

On my wobble days, I’m the mummy who feels like giving up. Who looks at the big picture and feels so overwhelmed. Who wonders again why this happened to our family. To our little girl. 

The day couldn’t be rescued so we sat and cuddled for as long as she would allow, and I let tears flow. I gave her a silent promise that I wasn’t giving up and tomorrow was a new day. That I was sorry if I wasn’t doing things the right way.

And I would do better.

I moved her to her napping cushion beside me and found something to occupy my mind till she fell asleep.

Then something took me by total surprise. Movement caught my eye. Dixie. Sitting up. By herself. Having pulled herself up off her napping cushion. And now she was grabbing at the toggle thread hanging from the hood of my jumper. She was trying to put it in her mouth. 

Maybe the day could be rescued after all. 

Such a small thing to most but to me. Well it just turned my day around. And that fire in my belly came back. 

I felt renewed. And after she napped, we tried all over again! 

 

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.