Staying Positive

In light of the climate we are in right now I felt this blog was incredibly important to write.

Positivity is something that I live by and I want to pass that on to anyone who reads this.

Positivity is hard. Positivity is even harder when you are in a situation that you did not plan nor expect.

My twins Sawyer and Quinn were born at 27.2 weeks. They were both just over 2 pounds and so incredibly small.

We had a very long and hard NICU journey but we survived. Sawyer became so ill in the NICU that he sustained a brain injury and has life long disabilities because of it.

It would have been so easy for me to crawl into a hole and become angry and negative, but that wouldn’t have helped anything.

It would be easy still to be negative and play the victim. It’s much easier to do those things than picking yourself up.

You see, positivity is a choice. You have to wake up each day and CHOOSE to be happy, CHOOSE to fight and CHOOSE to battle on.

I CHOOSE each day to look for the good, even in the worst of days.

My children feel that and the people around me feel that. I want to make a positive impact on this world in whatever small way that I can.

I am not saying that I am a happy and bubbly person all the time.

I have my moments, sometimes I allow myself a day. However, that is all they are.

There are moments I say “Why me? Why us? Why God?” but I always pick myself back up, however hard that may be.

You see, playing the victim and acting as though everything is done “to” you is no way to live.

If you choose to believe that everything is done “for” you and find the good in all situations then I promise those around you will feel it.

Wouldn’t it be great if everyone around you had a smile? Wouldn’t it be great if we had the power to change the climate around us?

Choose positivity. I promise not only will you feel better, but those around you will too.

My boy with two buttons

It’s 10.30pm. The relentless beeping of Jaxon’s feeding pump is showing no mercy.

I’m frustrated and find myself shouting at this inanimate piece of equipment that keeps my son alive by providing him with the nourishment that he needs to thrive and survive.

Feeding tube awareness week has just passed.

Something I knew very little about before Jaxon was born but something I’m almost an expert in now.

I say almost because even when you believe you know everything there is to know about this method of feeding, tubes or pumps have a way of throwing an unexpected curveball from time to time.

Jaxon has been tube fed since birth. For the first nine months of his life he was fed via a nasogastric tube; a tube that goes up his nose and down into his tummy.

I was reluctant to take the next step by putting him forward for gastrostomy surgery because deep down I believed he just needed a little more time before he’d grasp oral feeding.

Looking back, my decision to refuse surgery initially just prolonged our agony and I wish I’d accepted the inevitable sooner.

Life is so much easier now with a G tube.

Despite Jaxon needing to go to intensive care for a few days following his surgery and spending a further five weeks in hospital whilst we found a feeding regime that worked for him due to him not being able to initially tolerate gastrostomy feeding, it’s not a decision I regret in the slightest.

His reflux has improved, he’s gaining weight like never before and no longer classed as a failure to thrive, there’s no more frustrating trips to hospital to get an x-ray to check the NG tube is in the correct place and no more waking up to find a yellow silk tube wrapped around Jaxon’s wrist when he’s yanked it out during the night.

A couple of weeks ago someone said to me “it’s not much quality of life for him is it, not being able to eat?”

It took me by surprise and made me question Jaxon’s quality of life.

He has plenty of challenges that affect him so to the outside world his quality of life may seem pretty poor.

There’s challenges we’re addressing every single day to improve things for him.

Being a tube fed baby is NOT something I recognise as giving him a poor quality of life, ultimately it gives him a life.

It gives him the opportunity to be here. Without his tube the reality is he wouldn’t be alive.

Even if he was, if we forced him to feed orally, chances are due to his brain injury he would likely suffer from frequent aspiration.

He wouldn’t gain weight, he’d suffer more chest infections than he currently does and he would be entirely miserable.

So as I shout at the feeding pump for the 30th time this evening, I’ll remain thankful that it exists.

I’ll be thankful that my boy has two buttons; a belly button and a gastrostomy button.

I’ll be thankful that the fact he is unable to orally take nutrition does not mean he can’t live.

I know you didn’t ask… but it’s a feeding tube

This week is tube feeding awareness week 10th – 14th February.

I know, every week seems to be an awareness week for something, it even seems that some awareness weeks overlap one another, unfortunately this probably causes the opposite of the desired effect as people take less notice of one awareness week in a sea of many.

However, the awareness of tube feeding (or at least the tube itself) can often be rather abrupt for many people.

Our Lydia is 4 years old and still has an NJ tube which is on her face and goes in through her nostril, she is much older and has had this type of tube much longer than most children who have an ongoing condition that requires tube feeding.

Usually she, as with most children with these conditions, should have had a tube surgically inserted into her torso – a surgery that we are waiting for, would be better for Lydia and which makes tube feeding a little more inconspicuous too.

This is why we often see people made abruptly aware of her feeding tube as it’s right there on her face.

Sometimes people stare, sometimes they have an initial look of shock followed by the laser stare in any direction but ours and then there is the absolute horror of people when the children they are with tilt their head and say…… what’s that tube thing?

Amazingly the best reaction is generally that of the children – asking an honest question.

Does it affect me?

If we’re honest, that seems to be where genuine awareness begins or ends, people only REALLY care if it affects them.

With tube feeding this is often the abrupt introduction people have to it.

There are so many illnesses and difficulties that can require somebody to use a tube despite never having had any struggle of this nature in the past.

So, the reality that anybody at any time could have an NG tube fitted on a hospital admission means they could learn about tubes having seen one on their loved ones or having had one themselves for a short time.

Some people have these tubes all their life, through their nose, through their belly, going into their stomach or even going just beyond the stomach.

They help with feeding or sometimes they’re even just fitted to help drain your stomach and if people were more aware of them, not only would it help people like us – so we don’t have to deal with the reactions but it would also help people when in the future if they or someone they love need one they won’t panic.

Is it that big a deal?

Well, in a way yes. It is vital to my little one as it’s her lifeline, it’s how she feeds but, in another way, no.

We don’t really notice it anymore, we notice more when (for short periods) she doesn’t have the tube in much like the effect of a pair of glasses.

When I see people with the look of absolute shock on their faces I often think – that’s what I must look like when I see people with those daft wireless earphones that look like the head of an electric toothbrush.

I honestly think that there are many more silly looking accessories that people choose to attach to their face of other places than a simple and useful tube.

It’s not because she has cancer

There have been many misconceptions when it comes to the tube but this is probably the one we hear most often.

Of course feeding tubes are used by some patients when they are fighting cancer but they are used for such a broad spectrum of reasons/issues.

This goes back to the “does it affect me” portion. Cancer of course is a huge fight and therefore affects so many more people, which means there are so many more adverts and more charitable giving goes to cancer charity than any other charity type.

Basically we’ve all been impacted by cancer, either directly or through one of our loved ones – hence we’re all aware of it and motivated to know more and do more.

That is all wonderful but there is still a little bit of the selfish – if it affects me then I care about it approach.

Some take home points

1. Tube feeding isn’t that weird; we’re made up of all sorts of tubes anyway.

2. Ask questions, we actually appreciate how honest and inquisitive your children are.

3. Enjoy food, in a world where we’re all becoming afraid of what we eat, take time to realise just how much you would miss it. It is a heart-breaking change giving up on feeding your children in a conventional way and really makes you consider what’s important (The “breast is best” arguments etc become almost pathetic) so just enjoy what you can enjoy and be aware that many don’t have the same blessing.

Feeding tubes are a great and very important help, even if none of us really want one. The only choice we have is to own it!

Keep going you Tubies out there.

Strange days indeed

It’s one of those mornings.

I wake at 5am to hear a determined 13-year-old trying to exit her room by squeezing herself under the stairgate at her door.

It doesn’t work as she is blessed with the booty of her mother’s mothers, so she gets stuck and shouts.

I left the marital bed at 1am for the spare room as the snoring had become deafening so I figure it’s not my problem.

Shaken out of sleep I realize I am a terrible mother and wife, and so am wide awake, while the escapee and snorer have both managed to fall back to sleep.

Just for fun I run a few of my favourite, back stories in my head.

I am the star of these glorious productions, and while I consider myself, failing in a myriad of ways I make absolutely no concessions for my age, tiredness or general humanness in the tale.

Each failure is utterly my fault and could only be resolved if I was an all-round better person.

I’m not.

Thirteen years of caring hit me like a brick on the forehead.

I was going to write about self-care this morning.

How important it was to eat the rainbow, do the things you love, exercise religiously and surround yourself with sunlight.

Instead I offer you this.

On the mornings you wake up imagining that the teachers at school talk about you behind your back because you lost your child’s reading books again, these same books that your child only manages to listen to the first word of (This you understand ,not because she has huge cognitive challenges, but because you have not used your professional skills to gradually increase her attention span, but have let her watch The Wiggles on her iPad)

On these mornings forget the Instagrammable meals and to do list.

Get your child out of the house onto transport as soon as possible-stay in your pyjamas, cleverly disguised as exercise wear.

In fact, if you like put your running tights on so you look like you’re just about to go out-they are as comfortable ad pyjamas anyway.

Shut the front door. Turn off the phone. Find a carb if your liking and consume it with a cup of coffee.

Grab a cat if you have one. Put it on your chest and lean into the purr. This is an animal that knows the importance of rest. Let it be your teacher.

Turn on the tv (books are available but at the bottom of this well of tiredness who even has the concentration?) and watch anything you like without fear of judgment.

At some point you may have to get up to boil a kettle or eat something. Do not be drawn into a chore. Resume the position you only have a few hours before the school taxi returns.

Rest is important, vital for recovery and progress. It is not an indulgence it is a requirement. Nobody will die if you don’t put a wash on. There is absolutely another day tomorrow.

There are other days when getting up and setting yourself a task like getting dressed is the way forward. (if all you tomorrows are like today and getting off the sofa becomes an impossibility then another level of self-care needs to kick in involving a GP and extra help.)

Nobody told me there’d be days Like these. They don’t tend to be ‘grammable.

See you on the other side

Sometimes, you’ve just got to get over it

Looking back at myself, before becoming a parent, one thing is clearly obvious. I was a wimp.

Having kids tends to bring out a sense of tenacity in us; strengths arise inside that we never thought possible.

The vulnerable little ones in our care need us to be MORE, and that’s what we become.

Once, I was soft-spoken with a more delicate disposition. Becoming the parent of children with special needs has drastically changed that.

I owe a mighty surge of newfound courage and steadiness to them.

I’ve encountered situations that would have caused the “old me” to want to duck and run.

Now, I know that these unexpected, unavoidable times of parental stress are impossible to hide from.

They are inescapable. However, we can’t let them break us down; we can’t dwell on them.

Sometimes, as a special needs parent, you’ve got to stand tall, deal with it, and move on.

No matter how daunting the circumstance, I remind myself: Sometimes, you’ve just got to get over it.

There are many trials that no parenting guide or child-rearing book could ever prepare you for. Not even close.

I have been through instances of medical and emotional turmoil that could fill the pages of my own book.

Embarrassing moments where you wish the universe would just swallow you up, right where you stand.

A swim diaper failing MISERABLY during an aquatic PT session.

A tantrum that is BEYOND intense, as you’re leaving the playground.

Chronic GERD episodes that erupt in the middle of an overly crowded restaurant…or in the Planetarium, all the way until you’ve reached the exit door.

These experiences require you to dig deep and somehow find a glimmer of humor to avoid losing it altogether. They cause you to briefly wonder, “Can I show my face here, ever again?”

Plenty of occasions have also sprung up that have awakened the fighter in me, and eliminated my once pushover self.

Sitting in meetings with school administration; unaccepting of the excuses for bullying.

Arguing with insurance companies over the desperate necessity of medical equipment.

Pushing back at a customer service rep who made a mistake, causing our imperative monthly medical supplies to stop.

Being fed up with the lack of support and understanding for my child at school; therefore, deciding to homeschool…the list of these goes on and on.

For each of those events, I’ve had to embrace being “THAT MOM”, suck it up and power through.

I would have never imagined myself having the fortitude needed to handle all that I’ve had to contend with.

At times, I do get overwhelmed and I feel myself stumbling. In those moments, I know that I must regroup and reassess.

My children need me, and they deserve the strongest version of me.

For that reason alone, I work fervently to manage the predicament at hand, deal with it and not let it consume me.

I know that more obstacles are lurking, just around the bend.

When another hits, sometimes, you’ve just got to hold your head high, get over it and move on.

You’ve got to be prepared to tackle the next one.

Parenting a sensitive child

Last week my son was in hospital as an inpatient and my husband brought my daughter to visit.

My son wanted a drink but as he needs a straw to be able to drink my daughter cane with me to the small kitchen in the ward so we could find one.

In our haste, and in my stress, I failed to read a sign on the kitchen door which read ‘no children allowed in this kitchen’.

Of course just at that moment a nurse walked past, saw us and told my daughter to get out the kitchen pointing to the sign.

My daughter burst into tears and for the rest of her brother’s hospital stay she shook with fear and hid her head in her hands every time a nurse came near.

My daughter is an extremely sensitive child and has been really affected by that small incident.

She’s not alone. It is estimated that between 15 and 20% of children have such a sensitive nature as my child.

They are often seen as anxious, fussy, emotional, bossy or shy.

They can be labelled as ‘attention seeking’ or ‘lazy’ or even ‘immature’ and schools can sometimes even refer the child for counselling or therapy because their nature is deemed to be seen as a detriment and a weakness.

I am not ashamed of my highly sensitive child but parenting a sensitive child is challenging.

My daughter can be happy and content one second then have tears running down her cheek the next.

Anything from seeing a child or animal hurt on something she is watching, to having something not work that she’s trying to do, to having someone just look at her!

Someone speaking to her in a tone that implies she’s done something wrong, or looking at her angrily, or not letting her finish what she’s saying, all make her cry and become distressed very quickly.

Parenting a highly sensitive child is like walking a tight rope as anything can cause an emotional outburst and then everything falls apart.

But on the other side my daughter can show such huge kindness and empathy because she feels so deeply about everything.

In winter she feels so sad that birds can’t get worms that she begs me to buy bird food for them and will happily stand silently watching a little Robin eat some as a tear silently runs down her cheeks out of delight and happiness.

Christmas has her wanting to pack shoeboxes for strangers in abundance because she can’t bear the thought that one child might miss out.

She takes 30 sharp pencils to school in her bag every day so she knows every child in her class can have a pencil should they need one.

She epitomises kindness and love.

Discipline, however, is a huge challenge.

She says sorry a million times for the smallest of slip ups and want to make amends for ten years or more for spilling a baked bean! Raising my voice has her instantly crying and even correcting her brother upsets her.

She thinks everything is her fault.

She wants to make everyone happy.

She feels injustice and unfairness very deeply.

She would do anything to stop anyone else’s pain.

She’s a perfectionist.

She worries about everything and once cried because a teddy fell on the floor and she was afraid she had hurt it!

She’s tender hearted, kind to a fault, generous, loving, caring, gentle and shy.

Her heart is precious, tender and easily hurt.

Parenting a sensitive child isn’t for the faint hearted and our children are often so misunderstood and wrongly labelled.

It takes extra patience, extra love, extra courage and extra strength, but with it comes extra pride, extra beauty and extra delight.

Children who are extra sensitive like my daughter are very special, though sometimes I wish I could cover her with a sticker (attacked with bubble wrap as pins, glue and tape would hurt her delicate skin too much of course) that simple reads ‘handle with care’

Maybe then others would realise that I’m not being overprotective and she’s not just spoiled, she is in fact tender, deep hearted, extra caring, super aware of others feelings and very sensitive.

Maybe then others would be more sensitive and understanding to her like she is to them.


Fed is best

As we approached Feeding Tube Awareness Week, I have found myself reflecting upon a time when I was completely oblivious to the concept of tube feeding.

Prior to two years ago I could not have told you what a g-tube or ng tube was. It has become such an enormous part of our lives that sometimes I forget that I myself was completely unaware of it until recently.

My daughter is our one and only, so I have no other parenting experience to compare to.

The idea of a child telling me they are hungry, and me fixing a meal is a foreign concept to me. All she and I know is a strict schedule of mealtimes that are carefully planned for her caloric needs.

I frequently let her try different taste and textures, but she shows little interest in it. She finds eating in the typical sense far more stressful than her g-tube feeds.

I find myself having anxiety feeding in public.

I know the stares and sad looks we will be on the receiving end of, so I tend to schedule feedings at times when I can have privacy.

It’s a part of myself I am not proud of. I want to be the person that advocates at all times, and that was not so concerned about others opinions. It’s just one of those easier said than done things.

When I am truly honest with myself, I often wonder if I might not have given curious stares watching another mother tube feed prior to all this. I’m trying to become better at seeing through others perspective.

Sometimes being a special needs parent can jade you to the reality that it is truly human nature to be curious.

When you feel like it’s you and your child against the world, you automatically become defensive to the people around you.

Moving forward in this journey I hope to improve upon my patience with others.

That their looks are not meant to be malicious, but just curiosity.

I want to educate rather than judge. I want people to know she is happy and healthy despite being unable to eat orally.

I want people to understand that we do not look at the tubes with disdain. We look at them as a tool that facilitates her to be with us today, and we are eternally grateful for that.

Because at the end of the day, fed is best.

Baby, it’s cold outside

You may be reading this now, bundled up with a blanket, fireplace going and sipping some warm coffee.

Maybe you are enjoying a nice warm sunrise (lucky!) in shorts and a t-shirt.

Or, you could be living in Texas like myself and be experiencing all of this in a weeks period! Seriously.

The weather here has more mood swings and tantrums than my three year old son! But when it is cold outside it is cold, and our future is only looking colder with a household move up North to the state of Maine.

That is right, this little Texan family is heading North East over 1,000 miles to Portland, Maine.

One of the most memorable responses we received from one of Oliver’s doctors when we told him was, “You know it is cold up there right?”. Chuckling, I responded, “of course”.

We are fully aware that they get multiple inches of snow in a night, and experience some serious snow storms throughout the season.

We are completely prepared for that. What I will admit that I am not prepared for, is how to raise a wheelchair dependent son in areas of ice and snow.

While we experience the cold here in Texas, I can manage the cold wheels we get and that leads to a simple fix of putting gloves on his hands to manoeuvre around. But how does one manoeuvre around in the snow on wheels?

I can barely manage to walk in it sometimes without slipping on my behind.

To give you a little insight on what I am picturing right now, close your eyes for a second.

Here is my Oliver in his wheelchair on the sidewalk covered in ice or snow. He comes to a small downhill and sees nothing but an awesome, FAST ride down.

He doesn’t understand the physics of it all, or even contemplates how he will stop on the way down. Before I can catch him, boom, there he goes!

Silly, but that’s what our minds are for; to drive ourselves crazy with all the “could be situations”.

My research has lead my to finding some awesome accessories like Wheel Blades, which are essential wheelchair skis to help the front cast wheels manoeuvre in the snow or even sand without getting stuck or digging too deep down.

It is something I will probably buy and test out, but I am very curious to hear any tips or suggestions for a newbie family like ours! How do you all manage a wheelchair in the snow?

Not only this, but are there any coats, pants, or boots that you all find helpful to keeping your child warm in this type of weather?

Comment below to help this momma out! I will be forever grateful.

Welcome to tube feeding awareness week!

This years one marks almost 6 years of us being tube feeding extraordinaires!

Each year I like to reflect on our feeding journey. It has been an arduous battle.

There have been many tears shed, many head in hands moments, many late nights desperately seeking out advice from other families and obsessively searching for ways to improve things.

For those who don’t know. My daughter, Amy-Rose went into shock when I was in labour.

She sustained a severe brain injury and as a result has quadriplegic athetoid/dyskinetic cerebral palsy. She has epilepsy and has been tube fed since birth.

These days I am unaffected by the stares we get when I administer meds in a cafe.

I don’t care if someone looks for just that little too long, makes eye contact and then looks away embarrassed. It used to make me feel really self conscious and upset.

Why couldn’t we be like that family over there arguing for our child to eat one more chicken nugget? How I longed to argue over her eating one more spoonful of peas before she could have an ice cream… how I still long for that.

But as time goes on, acceptance grows. I have a wobble every now and then, sure.

But generally I am happy that we are able to give her what she needs and that her nutritional needs are mainly being met.

I recall in the early days first seeing that yellow tube in her nose. All I could think was how uncomfortable it looked and also how unnatural it was on her perfect little face.

I immediately took a dislike to the tube, unaware of the chaos it was to bring us over the coming months.

We had the issue of her constantly pulling it out, the bright red sore skin from the tapes/plasters, the non existent aspirates and then trip to hospital to check it was in place.

I remember bolus feeding her every 4 hours, even through the night.

Willing desperately for the milk to go down… but then having it pour all over both of us when she refluxed and it forced it all back out. It was completely soul destroying.

Every few weeks we would appear at the hospital either to see speech & language in hope of trying some dummy dips to encourage oral feeding – or in in floods of tears because she wouldn’t stop crying and arching.

They were honestly the hardest times of my life. I still can’t believe how we got through it.

We delayed getting a gastrostomy. We were terrified.

At 10 months old we got a gastrostomy and fundoplication (they wrap part of the oesophagus around the top of the stomach to help ease reflux). Initially it was a dream. No more nasty tape, no more sore face, no more constant tube repassing.

However we quickly learnt that managing a stoma site can be a tricky business. With the best care in the world ie weekly water changes, daily (sometimes twice) cleans, barrier creams, dressings, gauze, tube pads – some stoma sites have their own agenda.

We battled (and still do to a degree) with over granulation. This is where the hole thinks hey I’m not a natural hole, let’s heal up. And it can get really nasty looking.

Eventually Amy’s fundoplication failed… she projectile vomitted through it and we knew it was game over.

It took a long time to get to where we are now. Initially surgeons wanted to entirely separate her stomach from her oesophagus (it’s called an OGD).

It is a massive massive surgery and we simply had to exhaust all other options first.

So we went for a GJ/Peg-J. This meant we bypassed Amy’s stomach and fed her bowel instead to prevent it refluxing up.

It was great but every time it needed changing it involved a day in hospital, and sedation which of course has its own risks. So now we have two tubes! A separate G and a separate J.

A nurse recently asked if we have special names for the two buttons. I was amused but no, we haven’t got names yet. I thought maybe Guinevere and Jemima, but I’m not fully decided yet.

Amy is still fed over a 24 hour period. She still has abdominal pain. We still aren’t meeting her calorie or fluid requirements. We are soon going to the city hospital to explore the option of a ketogenic diet in hope of improving her seizure situation.

I am nervous as it isn’t a simple case of changing formula… and in any case, formula changes have generally been disastrous for us. So I am cautiously optimistic.

I used to hope hard for her to learn to feed orally. But now I’d be grateful for her gaining weight, having energy, and being comfortable. I feel that’s all I can ask for right now.

The tube is often one of the first things they notice about Amy.

This makes me kind of sad. They see the wheelchair, the splints, the tubes, the uncontrolled movements.

I get it, you don’t see many amazing kids like mine around – she’s a bit different, but that’s okay.

I just wish people would come and say hi. It’s such a great way to educate people on the different ways people do things.

Amy is just like other children, she just needs more help, she may have medical stuff going on, but to her she couldn’t care less that she has two tubes… she just wants to laugh, play and sing like any other kid.

I am so proud of what she has been through. She takes all of the challenges on like they’re no big deal.

She plods on day to day and embraces life to the fullest. Much as I hate the feeding pump for keeping us up all night, much as I hate the smell of formula, much as I hate drawing up 20 syringes of meds per day – it’s an intervention that if it didn’t exist nor would my daughter.

And quite frankly, that doesn’t bear thinking about.