I cancelled my annual doctor visit three times until I finally made it there last month.

None of these things should be that hard.

Yet, there it is.

There is never enough time to think about me.

Most parents experience guilt in raising their children.

We parents never feel like we are enough.

We are plagued by our inadequacies and frequently torment ourselves regarding our shortcomings.

Our children come first, always.

Their schedule, their needs, and their desires drive our every move, every day.

If this is true for most parents, than parenting a child with a disability is this experience times a million.

Danny just has so many needs.

He has a home physical therapy program, extensive feeding needs and a blenderized diet, vision therapy, center based therapies, doctor appointments, school, and personal care needs.

If I choose to vacuum or pick up a prescription, it ends up taking time away from something else.

I feel guilty for folding laundry with him because then I know we won’t have time to work with the light box before we go to hippotherapy.

There seems to be a constant trade-off, and it is very difficult to ever put myself ahead of my son’s needs.

This is simply not okay.

There are no awards for mothering martyrdom and I know that it will eventually catch up with me.

Everything that you read about parenting children with disabilities says that you must take care of you.

It is vital for caregivers to meet their own needs in order to have anything left to give to their children.

I couldn’t agree with that more.

My question is this: what do I sacrifice in order to take care of me?

Does that mean we don’t take that neurology appointment because I already had a haircut scheduled that day?

Do I cancel hippotherapy because it conflicts with a yoga class?

Does Danny miss his vision therapy because I want to have lunch with a friend?

These are the choices that I continually face, and when in doubt, I choose Danny.

However, I do need to resolve to ask for help.

We have a tremendous support system, and I know how lucky we are to have our circle of family and friends.

I need to evaluate how much of this Danny needs me to do, and how much I can help other people help Danny.

In order for him to develop more independence, I am going to have to learn to let others step into the caregiving role.

There is nothing more difficult for me – no one knows him like I do.

They never do it quite right.

However, that is on me.

When would they ever have the opportunity to learn if I never allow them to try?

I must learn to let go.

My entire identity has become “Danny’s Mom.”

In order to continue to do that job well, I need to become a bit more “Laura” again.

The seizures themselves are bad enough, but the medications used to try and suppress them are every bit as bad.

In effect, we have to give our child medications to slow his brain, then the Professionals wonder why he struggles to learn/demonstrate what he knows.

Recently Sam’s seizures have been getting out of hand again – having been NG fed for the past 6 weeks he has gained considerable amounts of weight, which will inevitably knock his seizure control.

Things get really complicated when you know that the NG tube made his reflux infinitely worse, leading to chest infections and several very scary moments.

Last week Sam finally went in for his PEG insertion, the PEG is now in and healing nicely.

So, after weeks of frustration and keeping the neurologist informed, we’ve now got a plan to change his meds. And it is a scary one.

Sam’s neurologist has very set ideas on how he wants to proceed – he rarely shares this information with the parents, however in 4 years he has rarely made a wrong call over Sam and his care.

So, when he recommended removing one of the meds Sam has been on for many years in favour of increasing the dose of one we really aren’t keen on…. let’s just say it’s quite a leap of faith.

But I trust this man with my son’s life, literally, and he hasn’t let us down yet.

Two nights ago, we started the changes…. one medication reduced, another kept the same, and the third increased.

The problem is, although the aim is to keep a balance, the medication that was reduced has been crucial in helping Sam for most of his life – however, as the neuro said, it has some very serious side effects which are non-reversible.

If it had made Sam seizure-free he wouldn’t take him off it, however the pros no longer outweigh the cons.

The reduction left Sam vacant and groggy, as the increase in the third medication isn’t yet enough to counter the reduction in the first. It takes a lot of gritted teeth to battle through on days like that.

Seeing my usually happy little boy completely polaxed, non-interactive and STILL fitting is a tough call.

But today, we may be starting to see light at the end of that particular tunnel – Sam has been happy, laughing, chatty and full of life again 🙂 This is also not unusual with meds changes; my boy likes to throw everyone a curve ball and respond positively initially to changes, only to acclimatise to them within a few weeks.

Again, this is not uncommon in children with his type of epilepsy but is incredibly difficult as a parent to deal with.

So, for now, we’ll happily take this (possibly brief) break in the storm and make the most of this precious time with our little man, while he’s lucid and at his best – because you never know, this time it might be the real thing x

I’ve come to appreciate just how vital communication is.

My little girl has always had a very tough time communicating.

That being said, she has come SO far in her four years and we couldn’t be prouder of her!

Brielle is deaf and wears cochlear implants, she is mostly blind too.

She doesn’t talk and vocalises very little. However, she is learning how to sign in response to hearing us, and uses some tactile sign and gestures.

It has been so exciting to see her little-self develop…she recently started initiating conversation, or asking for things, by doing a simple sign.

For instance, she hears the water running at the sink and she’ll do the sign for “wash hands” or she is feeling hungry and she’ll sign “eat” and head towards the kitchen.

Many people speculate on whether she will ever talk.

We’ve worked with our fair share of speech and language therapists, audiologists and teachers of the deaf, both in the US and the UK.

Many keep pushing for vocalising and speech.

But you know what?

It really does not bother me if Brielle ever talks.

As long as she can communicate effectively, which I have a feeling will be in sign language, probably mainly tactile sign.

My desire for her is to be heard and understood and to receive information in a way that makes sense to her.

Yes, it would be great if she wants to keep using her cochlear implants to gain access to sound and speech.

And understand speech as much as she is able.

But when she is older, if she decides not to use her implants, and wants to rely wholly on sign, well that is her choice to make.

There is much more to communication than speech.

I’ve realized that Brielle is a unique being with her own personality and preferences, she cannot be figuratively “put in a box” – although she loves to be put in a box to play!

Sometimes I must admit, I do long for her to open up her little mouth and let out some sounds, attempt a wee word! But I don’t have my heart set on it.

I’m content in knowing that she will show us what is right for her, in her own time, on her own terms. We just have to provide her with the best possible tools and opportunities to learn, and reach her full potential.

I never knew before Brielle came into our lives just how beautiful communication can be.

But I know how difficult it can be too. I’ve felt the pain of having very little communication from her.

She was so sick for her first two years really.

She didn’t move much, she hardly cried, she couldn’t hear us or understand sign language, she didn’t show much response to us or our attempts at communication.

Now she is a different girl.

Her personality is shining through, she shows so much emotion, she is affectionate, cuddly and clingy even.

She smiles and laughs (albeit a rather silent laugh), she cries quietly and moans, she sometimes lets out little shouts and noises in excitement.

She communicates with her facial expressions and eyes.

She is learning to ask for things in sign language.

She is learning to listen with her implants and with her hands.

And above all, LOVE is our main mode of communicating.

And this is one of those times when special needs parents differ to those of children without major health issues.

You see, a virus almost killed my child when he was just 12 months old (influenza  A).

For many children a cold is just a cold; irritating, unpleasant and leaves you feeling naff but isn’t actually life-threatening.

To many special needs kiddos, it really is.

In Sam’s case, a virus usually equals high temperature. Viral infections can rapidly lead onto nasty bacterial chest infections, because he struggles to clear the secretions from his chest that comes with a virus.  All of this means seizures go sky high.

So when I got home from work and his Nan looked worried every maternal instinct I have went into overdrive and immediately shot a look down at Sam sitting in his comfy p-pod (oh how much do I love that chair?!)… at what point did I learn how many breaths per minute was a normal value for a 3 year old?!

Within 30 seconds I’d determined that he was breathing more rapidly and more shallow than usual, he was working a little harder than usual to breath too (barely perceptible changes, but as a special needs mum you just KNOW).

Pale, glassy eyes, looked slightly sweaty and clammy.

I knew what the thermometer would say even before it beeped with the faster beep indicating a temperature of over 38C.

The inquisition began: Had he had calpol yet? Yes, he had. Seizures? Yes, two big clusters, around 4mins for the first, 9 for the second. Oxygen needed? Yes, both times.

Dammit. Every time Sam seems to get a break from the seizure activity, illness strikes and sends him reeling back into Seizure City.

Lots of seizures during the evening, the little dude just wanted to cuddle so took him up to bed with me early evening whereupon he snuggled into me while cuddling his beloved teddy, Mr. Scruffles.

Although his breathing overnight was pants, we got away lightly I think – only a couple more seizures overnight than usual.

And this morning he’s pouring with snot. POURING. As in, we-need-to-take-out-shares-in-kleenex type pouring. BUT for possibly the first time ever, he seems to be dealing with this one pretty well!

Big grins for me and Daddy (best therapy I could ever have that), even if he did insist on wiping his nose down my sleeve when I had a snuggle (I should learn not to wear dark tops); although he’s been quieter than usual, we haven’t (touches wood so so quickly here) ended up in hospital.  For Sam, this is a HUGE achievement.

To me it really emphasizes how incredible our kids are, whether special needs or typical – if I had that level of a cold I promise you I would be feeling very sorry for myself, yet despite all his additional issues this little man is refusing to succumb to the virus.

Only a couple of years ago this would have been a nightmare situation involving long hospital stays, oxygen, antibiotics to fight the inevitable secondary bacterial infections and a very, very poorly child.

When Sam was tiny and we practically lived in the hospital, my incredible Mum said to me that it wouldn’t always be this difficult.

That as he grew and got stronger he would be able to hold his own against the usual infections of childhood.  At the time, we couldn’t even think past that day, let along years into the future. We spent Sam’s entire first winter in hospital, his first birthday too. His second year, it was pretty similar.

Then his third year arrived, and we realised that we hadn’t had a stay on the ward in 4 months.

This winter has been a real pig for illness – the delightful Noro virus came to visit, snotty colds have done the rounds as have the usual run of chest infections/hospital visits BUT no actually hospital STAYS.

For the first time, we have managed to get through winter without being admitted  😀

Cue happy dance!

So, although Sam being poorly is utterly poo and rubbish, it’s really emphasized how far he’s come since the early days.

So, don’t lose hope – if you and your little people are suffering, hang onto the knowledge that they are stronger than you know, tougher than anyone else would believe and more inspiring than you ever imagined possible x

I remember asking my Health Visitor how you wean a child who is blind? And she told me that you did it just the same way as you do a neuro-typical child.

As it turned out of course, many, many other factors would come into play to make Alex’s eyesight the least of our worries.

So far down the pile it is – behind inability to walk and talk – that sometimes I’m genuinely surprised to see a note from his school that his visual impairment teacher has been in. But I digress. We started with baby rice (yak!) and moved through to baby porridge, so far so good.

But it turned out Alex had an aversion to a) certain textures and b) chewing. It’s effort Mummy.

So my freezer filled – and filled – with more puree’d and mashed food than I had ever done with Emma.

Night after night I did this as it was impossible to do it during the day.

My fridge covered in meal planners – 2 cubes chicken casserole, 1 cube broccoli (lucky boy) – weeks in advance.

Nursery was a godsend as suddenly it wasn’t just me doing all of this and their kitchen staff were brilliant – never too much trouble to mash/ blend/ serve something else if he just couldn’t manage.

Often he’d use his tongue to help mush it in his mouth. Or pop his thumb in his mouth to help.

It wasn’t pretty, but it was going down.

Delayed development meant his mouth muscles just weren’t there yet and, it turned out, he was too busy just trying to sit upright – there was no cognitive space left over to chew as well.

It was just like trying to pat your head and rub your tummy.

And then he was able to sit up independently. And suddenly, after what felt like an age of puree’d mush, of buying jars to take with us so we could go out somewhere as a family, little cubes of food became an option.

And little cubes became bigger cubes and suicide watch became less of an everyday occurrence (as, yet again, he’d choke on a piece of overly optimistic-sized meat) and he was able to eat every day food cut up into normal sized pieces.

In one of those moments of development not working in isolation… as those muscles improved he was able to make some sounds.

My little boy ‘spoke’. I heard his voice. I cried.

He’s babbling you understand, streams of nonsensical noises ‘dubbuh-dubbuh-dub’ being a particular favourite of mine, but there he is. In the room. Joining in the conversation as only Alex can.

We have a long, long way to go. Alex can finger feed beautifully, but he doesn’t always know when to stop, so you have to watch him the whole time to stop him over-stuffing.

He will pick up a loaded spoon or fork, but hasn’t yet worked out how to dig back in again for a refill. Sometimes he’ll just throw the fork down after taking the food.

This requires patience from us. And a lot of spoons.

But at the back of my mind as I watch my nearly five year old boy being spoon fed, flapping inappropriately, flinging his sippy cup across the floor and I know that – to an outsider – this must seem a ridiculous life to lead…

I am immensely proud of my boy. And I’m proud of my family too. For riding it out. For accepting him for who he is. And for helping make it happen.

A full-time, stay at home mom, spending my days like many others.

I get two children off to school, sort the laundry, clean the house (to some degree) and run errands for my family.

I help my son with homework, and then I make dinner every night.

Bath time and bed time routines are an important part of our evening.

These are all familiar activities that so many moms who stay at home raising children experience every day.

Beyond these typical daily duties, I am a Special Needs Mom.

My work day begins at 6:00 am and continues on, sometimes through the night.

Mornings entail measuring medications, bottle feeding my four year old daughter, and sticking to a strict routine to keep my eleven year old son calm and on task.

Hours are spent scheduling physical, occupational, social and equestrian therapy sessions, as well as routine and specialist doctor appointments.

Too many hours to count are logged contacting insurance providers, paying visits to school officials (I’m sure they LOVE to see me coming!), calling pharmacies and medical mobility equipment providers.

Attending therapies, and carrying over the learned methods at home take the place of hours once spent behind a desk in the working world.

Preparing special, high-calorie pureed meals and searching for gluten-free alternatives now replace taking leisurely lunch breaks.

Then, there is the overtime put in researching homeopathic remedies, breakthrough therapies, communication and behavioral tools.

On a really ambitious day, I even manage to take a shower!

These are just some of the duties that I am responsible for in my job description of Special Needs Mom.

These tasks, as mentally taxing and exhausting as they can be, are proudly carried out with love each and every day.

And you must know, they truly yield the most beautiful rewards.

For this line of work, there is no paycheck, and there are no paid vacation or sick days.

However, a bright smile and a giggle from my amazing daughter or a tight hug from my incredible son is PRICELESS compensation.

They make all the difficult moments of my day melt away, and they are worth every second of it.

Life is not easy being a Special Needs Mom, but each day my heart overflows with the joy that my children bring.

I find myself to be so much more grateful at this point in my life than I have ever been.

This roller coaster of a journey that I never expected to take has become the beautiful path that I was always meant to travel.