Mothers Guilt

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I think it’s fair to say most mothers have felt some kind of guilt at one point in time. I think it’s also fair to say for some that guilt starts as soon as they get that positive pregnancy test.

The shock or exhilaration is quickly taken over by a memory of drinking a bottle of wine the previous week, eating blue cheese or a runny egg. Not taking the right vitamins, doing some random strenuous activity….You get the picture.

Mine began when I found out I’d failed the glucose test at 26 weeks pregnant. This wasn’t helped by the fact I was drinking a can of fizzy pop and eating sour skittles when I took the call (hello pregnancy craving!!). From then I had to go to hospital every two weeks for monitoring. I was suddenly high risk. And diabetic.

I was soooo good. I really wanted to keep my sugars low with diet and in the beginning I really struggled just eating a slice of bread. Luckily for me though, 4 or 5 weeks into my new diabetic status I had cracked it. No bread at all. No junk. Small regular meals and snacks.

However the guilt continued when the doctor told me I was losing weight. Then that Dixie had stopped growing at 36 weeks. And her placenta wasn’t doing its job. I couldn’t grow my baby. Guilt.

I was told at 37 weeks she needed to be delivered by c-section as she was breech. I couldn’t get her in the right birthing position despite all my exercises and acupuncture. Guilt.

By two days old it was clear she wasn’t able to latch on and breast feed. I couldn’t even feed my baby the way I’d hoped. Guilt.

I did the next best thing for me and pumped. And pumped and pumped and pumped. Till my milk dried up when Dixie was around 10 weeks old. I couldn’t produce enough milk. Guilt.

Diagnosis day came and went in a blur. Chromosomes? Who’s responsible for that? Did I do something to cause my body to reproduce a third chromosome? Guilt.

The geneticist had told me that Dixie’s heart issues could be as much down to my diabetes as it could be to the trisomy. Which ever way I looked at it, I couldn’t give my child a healthy heart. Guilt.

These feelings continued through those early weeks and months.

I wasn’t spending enough time with Maisy. I wasn’t giving her my full self. Guilt. I wasn’t getting the best out of Dixie, I wasn’t interacting enough. More guilt. My house felt chaotic, it was a mess because I couldn’t get into my stride. Guilt. I wasn’t looking after myself, there was no time. I was so exhausted. Even.More.Guilt.

I tried to be the best at everything. I tried to do everything. And yet, I was barely holding anything together. In fact I felt like i was a failure of a mummy. When I would hear how well I was ‘coping’ I desperately wanted to be that person they assumed I was. Bright smiles and its all good. Even daddy L thought I was doing great because that’s all I let show. GUILT!

It went on and on. And on.

My lightbulb moment came as a passing comment. An innocent observation that truly helped me crawl out of a dark place. And once it was said, everything kind of fit into place in my mind. And it was so simple. I was trying so hard to control everything that I had hugely unrealistic expectations of how I ‘should’ be coping. I wasn’t letting anybody help because I believed I had to do everything myself. As their mum. And when things didn’t work out how I expected them to, I felt guilty. Like it was my fault.

But I couldn’t control everything. I couldn’t DO everything. Nothing would be perfect. Asking for help isn’t failing, because I’m only me. Just one person after all. And that’s ok.

I couldn’t control how Dixie grew (or didn’t) in my womb, as much as I couldn’t control her being head up and not head down! I couldn’t control Dixie’s heart, or her inability to progress developmentally as fast as I want. I couldn’t control the fact she was unable to drink out of a cup or chew a slice of toast.

I couldn’t control the way that extra chromosome had altered Dixie’s genetic make up.

I wanted something to blame. That something was me. But it wasn’t my fault. It isn’t. And I know that deep down in my heart.

Im not sure that this is a ‘normal’ mummy phase. Or whether its more predominant in those mummies dealing with a child with extra needs. Or parents even. Or whether this is just a me thing. But if you are out there, blaming yourself for something you know deep inside that you can’t control. Please stop. There is more than enough stress and worry in life without adding this notion that you’re not good enough. Not brave enough. Not the best mummy or parent for your child. YOU ARE!!!!

So there we have it. I would be lying if I didn’t still have little slithers of guilt here and there, whether its not paying enough attention to Maisy, not working Dixie hard enough or der der derrrrr taking a day off therapy!!

But I also acknowledge on the whole, I really am doing my very best. And I know you are too.

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HO HO HO

December. Ahhh don’t you just love the BIG build up to the hustle and bustle of christmas?

Halloween. Bonfire night with fireworks and toffee apples. Cold and crisp mornings, crunchy leaves on the ground. Advent calendars, Elf on the Shelf, Christmas shopping?

Last year, things were very different in our house. Our Christmas build up this time around was a slightly sick feeling in our tummies. We had been given a date for Dixie’s complex needs assessment and it was smack bang in the middle of December. She was 6 months old.

The complex needs board had been requested by Dr community at Dixie’s previous appointment. It allowed a full board of professionals such as a physio, occupational therapist, speech therapist, developmental play therapist and Dr community to meet Dixie in a group setting to assess her needs for the future.

Scary stuff.

We met with a lovely specialist health visitor the week before, who spent several hours going through Dixie’s history, her development (or lack of) and exactly what to expect on the day.

I was so incredibly nervous. I wanted to go by myself. I felt like i needed to start handling things alone, rather than having a hand to hold. I was her mummy and i needed to be strong.

And i handled it. And my girl handled it too. I was so very proud of her. And when the first words that came out of Dr community’s mouth was how proud he felt seeing her progress from two months previous ‘as her doctor and as a father’ I knew she did good.

But we won’t get ahead of ourselves. Despite some small steps in progress, Dixie was still very behind her peers. It was no great shock that the outcome of that meeting was that Dixie would require the full support of the entire team. Our life was about to get a whole lot busier.

And then suddenly Christmas was upon us. The day itself was full of joy, present swapping, food and drink. It was lovely to have time away from the rollercoaster that had become our lives. We could pretend for just that short time that all was well. All was ‘normal’…whatever that means…

But then reality catches up to you when the 6+ month toys you’d bought don’t even get a look of interest. Not a reach for, a touch, a passing glance. Nor the 3+ month toys for that matter. And you can’t pretend any longer.

Right after Christmas I got a call from the X-ray department. My girl was offered a cancellation appointment for a VF ( a video swallow to you or I) Total and utter relief that we would FINALLY get concrete answers.

And just like that, we were back on that rollercoaster! Happy New Year!

Our Little Family – Christmas Day 2014

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Things I’ve learnt so far.

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So far this journey has taught me a lot.

That you can cope with so much more than you would ever imagine. You adapt. You’re really no stronger than the next parent. You have no ‘super power’ or special knowledge on how to get by. You just have a beautiful child that you would go to the ends of the earth for.

Friendships change. Some drift away, some you push away unintentionally. You meet wonderful people who you admire. Some who inspire you. You can become immersed in your own little bubble.

It really is true that you begin a new kind of normal.

Something I heard time and again from other parents was how much my child would amaze me. In all honestly I didn’t really understand at the time. Those early weeks and months were just trying to get through each day one tiny step at a time.

But not now. Now I see it every day. My girls strength and determination. Her fun and fight. Yes indeed she amazes me! And more. She’s full of surprises.

Like the first time she hit a toy in front of her when I thought she never would. When she was recovering in hospital and grabbed hold of a rattle. When she took the spoon as I fed her, put it to her mouth and bit down. The piece of food she took from my hand and sucked. The time she passed her dummy from one hand to the other, and held her bottle for the first time.

And most recently, the kisses she gives. The excitement of seeing her daddy after work or grabbing her sisters face as they laugh and interact. The way she is engaging with the music end credits to ‘In the night garden’ – although this could be attributed to her excitement that igglepiggle has buggered off to bed. The end!!

If you had asked me when or how I felt when Maisy did those same things, I can’t answer. I don’t even know.

I’m not saying bigger things aren’t important. Her first smile (7weeks), her first laugh (4months), her first roll over (5 months). I just see all the little stepping stones that leads into the big stuff. And it’s at a much slower pace.

I’m also not saying I don’t get sad about the big stuff. I’m not saying I’m not sad about how I have to teach her to sit, to chew, to bang a toy, to clap. I have to teach her over and over and over and over (you get the picture) the things I took for granted with Maisy. The things Maisy just did.

And teaching her is hard. She cries, she resists, she finds it hard and it tires her out. I feel helpless in those moments, and it hurts my heart. Sometimes I just feel frustrated that she’s frustrated and I wonder why things have to be this way. But I told myself a while ago I wouldn’t let bitterness take over my mind and soul. So I try not to have too many of those moments.

Yes I wish for an easier life for her, but then I wouldn’t have seen her resilience, her determination and her stubbornness to set her own time limit. And I wouldn’t feel the joy I feel when all the hard work pays off.

And when she sits that first time with no wobbles, when she chews her first meal, when she bangs on that drum or claps her little hands. I will be her biggest cheerleading jumping up and down on the sidelines. Telling the world that my girl just did that!

Rainbows through the clouds!

November came by quickly. Time was moving on, and so was our appointment train. Choo choo. She was five months old.

Her follow up echo was first up, and a lovely balanced heart is what we saw! Fabulous. She may have a hole and a tightened valve against her but in typical Dixie style, she worked it. The two ‘baddies’ corrected each other for now. We were sent on our merry way with a follow up in 4-6 months.

We also had our genetics counselling after a lot of chasing on my part. I was hoping for more insight and information with regards to Dixie’s future. However, the only things I took away from that appointment was…

Dixie was ‘de novo’. Which means the extra chromosome was just bad luck and nothing we did (I didn’t like Dixie to be referred to as bad luck I might add!)

That we would have a less than 1% chance of having another trisomy baby (err no more babies thank you!).

Maisy wouldn’t be any higher risk when she came to have her own babies. That was a small comfort, because its a hard road.

What a shame I seemed to know more about T9M than she did, and the session turned around to her questioning me. I hadn’t seen the appointment go that way in my head!.

We also had a home visit by a lovely lady from Portage. Just a little intro to tell us about the service and to confirm that yes we did qualify (ughh I hate that word!) and on the waiting list we would go!

(FYI – Portage is a home visiting teaching service for children under 3 with additional needs – for us it’s provided for one hour every two weeks with a regular portage home visitor)

We also saw our Speech therapist again for a follow up at home. She did the usual listen while swallowing and concluded that although she didn’t think Dixie was aspirating her feeds, there was the odd noise that concerned her. The video fluoroscopy (VF) would give a much more accurate picture as to how safe her swallow was and until then we were left to continue with thickeners. She informed me the waiting list was 18 weeks.

Lastly something wonderful happened. I’ve spoken briefly about the T9M Facebook group I had joined, but not that the members are only at about 200 or so worldwide. One of those families lives 45 minutes away from us! 45 minutes!! What are the chances?! They also have a beautiful little lady who is slightly older than Dixie.

We agreed to meet up and it was the first time I could comfortably talk to someone about Dixie. And who I could ask questions. I don’t think I even took a breathe (for those who know me, it’s not completely unusual for me to be ‘chatty’ 😄) What a wonderful mummy she was, and still is. A friend for life. She probably has no idea how much I needed that time with her and her gorgeous little lady.

I was still a little low post Dr community’s appointment. I had already been discharged from my HV, and I didn’t know where to start to look for support up until this point. This wonderful mummy continued to be wonderful and found some local services for me to contact.

Here was my rainbow through the clouds. Hawthorn family support, and all the wonderful things that came with it!

It was a place for both Dixie and I to go once a week, every week term time. A nursery and sensory room for her and a little break in the parents room for me. And although it usually had a long waiting list, we were lucky enough to get a cancellation place. A Tuesday. And where I met the obviously named and incredibly fabulous Tuesday girls!

I could write about this place, the people who work there and the people I have met there for hours. I can safely say that it saved my mental state a few times over. Not only is it a great place for Dixie with wonderful staff who look after her, It’s a great source of information to access other services. And the family support worker is the absolute best at what she does.

It’s a safe haven for me. Personally I feel like I can speak honestly about anything and those girls will listen. And something else. I don’t feel alone anymore. I don’t have to sugarcoat anything because they get it. They understand completely, and that is liberating. All our children might have different challenges whether it be medical, developmental or both, but we’re all just mummies trying to do the very best for our kids.

And we’re all warriors!

I recently read another blog about how quickly your friendships with these other parents progress. It made so much sense to me. Some of these girls I’ve known months, some only weeks, and yet i can’t imagine my life without them now. Its a funny old world.

A new world to us. Im falling a little bit in love with it 💗💕💗

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Sisterly love 💗

I think there is something really special about a bond between two sisters. And I know that first hand as I’ve been pretty blessed in that department.

My sister & I are two years apart (me being the younger) and growing up I would say we had a good friendship and understanding. For instance we shared a room so my big sister ‘understood’ I would make a huge mess and she would tidy up!!

Seriously though she is one of a kind. She’s so incredibly thoughtful. She will do anything for anyone. Nothing is too much bother. I always wished when growing up she wasn’t my sister so she could be my best friend instead. I didn’t realise at the time that she could be both.

My bond with my siblings (yes I do also have a wonderful brother who is very special too) was one of the reasons I really wanted Maisy to have a brother or a sister. I would watch her play by herself and remember my childhood. Playing shops, silly board games, Lego etc with my siblings and I wanted that for her too.

When I found out I was having Dixie I felt complete. I know it sounds silly considering it hadn’t been planned and it was horrible timing as I was being made redundant. But I knew in my heart that our little family of four would fill a hole I hadn’t realised was there till then. Daddy L, our girls and I would take on the world.

Then Dixie arrived with that extra chromosome and the future i’d envisioned for my girls completely changed. At one point I felt instead of giving Maisy a gift, I’d given her a burden. It’s incredibly painful to think back to those feelings. And it makes me feel like crap that I felt that way.

Only that’s not how Maisy ever saw her. In those early weeks she became mummy’s little helper. She would come sit with me while I endlessly pumped breast milk. She wanted to hold her, cuddle her, read her stories. She wanted to come to appointments. She would talk incessantly about when they would share bunk beds. If I was in the next room, she would race in excited to tell me that Dixie was doing this or doing that. She didn’t see anything other than Dixie. Her sister.

And it gets better. This summer I’ve seen something amazing happen. My girls playing. Maisy putting on dance shows while her sister smiles and laughs with excitement. A communication between them that sees Maisy knowing when Dixie needs to be calmed down or entertained. More cuddles but ones reciprocated. I’ve had many a car journey this summer listening to my girls giggling together in the back. Ive watched all of this, and I’ve listened. My heart is full.

Maisy is however still only 4 and it’s not always sunshine and rainbows. She wakes her up. Sometimes she’s too boisterous and excitable. Sometimes Dixie wants to be left alone or Maisy would prefer to play with someone else. But Maisy is definitely the best sister I could imagine for Dixie. And Dixie’s reaction of joy when her ‘sissy’ takes moments to just play with her is written all over her face 💗

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All aboard the appointment train!!

October came and lots of appointments came with it. By this point Dixie had already had two hip ultrasounds, and one on her kidneys and brain. A spinal X-ray, two echo’s on her heart and an appointment with a hospital optician and ophthalmologist (eye doctor).

She was one busy little lady! She was 4 months old.

We kicked off the month with two appointments with the speech therapist I mentioned previously, and a second colleague. The first was at the hospital and didn’t go very well. I went through the whole pregnancy, birth and early weeks with one therapist while another prodded and poked Dixie’s mouth. They wanted to assess her feeding by listening to her throat as she swallowed her milk. This was not an easy task. Not only was she tired. She had spent the previous 10 minutes with someone’s fingers in her mouth. And I hadn’t left the thickener in her feed for long enough. This resulted in a very unhappy, uncooperative Dixie. One who cried, squirmed and choked her way through the test. Safe to say we failed.

The therapist who’d been examining Dixie asked to come to our home the following day and see if she was calmer in her home environment. And so the next day she came. And she listened. And we passed. Well almost.

Despite her doing better, speech still wanted to refer her for a Videofluroscopy (when barium is added to different liquid consistencies/purées and X-rays are taken while they swallow) I figured everything was worth ruling in or out at this point so was happy for the test.

Our next big appointment was the first with Dixie’s community paediatrician. Dr community. We had been referred to him from Dr diagnosis back in July. He would be our go to guy and oversee all of Dixie’s appointments and development.

The appointment itself was mixed. I liked Dr community. He had a nice way with Dixie. No doom and gloom. No making negative future predictions. Lots of questions and interest in her. He moved on to an examination which I willed her to pass.

I watched as he attempted to sit her small floppy body on his table, her head lolling slowly to the right. I watched as he pulled her up softly by her hands, and she swayed from side to side. I watched as he laid her on her tummy and she tried in frustration to lift her head. I watched as he used both flashing and noisy toys to observe her fix and follow. I watched as he passed her little hands tiny toys to hold that she instantly dropped. It.Was.Heartbreaking.

The appointment finished up with a prescription for extra medication for her reflux. And lastly he told me Dixie qualified for a referral to Portage (more about that later) and a full board assessment. Qualified? What did that actually mean? The answer was a bit of a shock. Dixie was over 50% delayed in two or more areas. Her vision was that of a 5/6 week old baby and her motor skills a 6/7 week – she was 19 weeks old.

Her final appointment that month was a follow up with the optician at the hospital. Again it was more tests I willed her to pass. Finally there was some good news. She had showed a slight improvement from her initial appointment 6 weeks previous. Of course this news was followed by the no guarantees for the future speech. I wasn’t bothered. She was doing better, and although still delayed she had potential.

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