ASDA to get the GoTo Shop Trolley

ASDA has just placed an order for 400 GoTo Shop trolleys to be rolled out in 8 weeks time.

ASDA’s decision will take the total number of GoTo Shop trolleys to 1,500 in UK supermarkets.

The GoTo Shop Trolley Campaign has an aim of achieving 1 GoTo Shop trolley in #EverySupermarket – so the campaign is far from over.

You can still get involved by sharing photos of your family using a GoTo Shop trolley on our Facebook Page.

Or download the leaflets here and hand it in to your local store.

Career Vs Carer: The Perpetual Balancing Act

We were young, free and single. Matt and I met ever so romantically over a spreadsheet.

He was an accountant in an NHS Trust and I was their auditor. It was love at first pivot table.

We were hard working and full of energy.

Matt had just qualified after years of exams, and his promising career was taking off.

We had similar interests, namely cycling, rock concerts and general decadence.

Life was a systematically organised rollercoaster of fun blended seamlessly with sensibility.

Matt changed job and moved up a notch in the Grand Career Plan.

We set up a small accountancy business together working from home to earn some extra money.

We had no idea of this back then, but we had an immeasurable amount of time at our disposal.

We had ample funds to line our pockets, which allowed us to fill our lives with richness.

We decided to start a family.

We knew it would be life-changing in so many ways, but we had absolutely no doubt that we were ready.

We were correct.

Having Jenson was the best thing that we ever did.

People had warned us of the things we would be relinquishing, but we never looked back at our former days and wished for them back.

That was then, this was now, and this was great.

I didn’t miss work.

At all.

I loved being a mum, and welcomed the new purpose I had in my own, “Grand Life Plan.”

However, life during Jenson’s first two years was tough.

He had a total of 200 appointments:  a staggering statistic that I still can’t quite believe.

When I returned to work when he was one year old, I found it especially hard-going, but we had no choice financially.

I still find it hard now.

In fact, merely balancing my job with my hectic schedule proves difficult enough.

I sometimes wonder how I will get through a week and the list of essential tasks and appointments.

My primary job is carer, PA, therapist (and the list goes on), nonetheless I manage to squeeze in my 3 days of proper work.

It is an everlasting juggling act.

There are times when I have to work late into the night to make up the hours, where I simply haven’t been able to deliver my 3-day working week during working hours.

Our accountancy business is running at a snail’s pace because everything else takes priority.

We daren’t abandon it as we know that it may one day prove to be a necessary source of income.

I have never had grand aspirations to achieve highly in my career; I am content with a good, steady job.

Lucky really, because the option of rekindling my career and going up into management is simply not viable.

Where other mums are able to shift the day-to-day responsibilities over to caregivers, albeit for a handsome fee and a huge burden of guilt, this is not an option for us.

I have to not only attend many appointments, but co-ordinate Jenson’s care plan and deliver therapies that I could not entrust on anyone else.

Matt continues to mark his career territory in his new job, and struggles to attend Jenson’s important appointments while working the hours required to establish himself on the professional ladder.

He is a terribly sensitive soul and he is perpetually torn between being there for his vulnerable son and emotional wife, and investing his time at work in order to mark out a robust future.

I am so proud of my husband, and so grateful that he takes the pressure off me to be a comparable contributor to the family finances.

He is my first line of defence, my emotional backbone and the family provider.

But the job sometimes consumes him during this career-defining time of his life.

It really upsets me to see the guilt and sadness on his face when he returns home having missed story-time and snuggles for the forth night in a row.

As for me, despite doing my best to give Jenson everything he needs to give him the best start in life, I still go to bed every night with a pang of guilt that I could have done more: more physiotherapy, more signing practice, tried him on more foods, given him more cuddles.

Life with a non-ambulant, non-verbal toddler can sometimes be tedious, where I am so limited to the activities I can entertain him with.

By 6 o’clock I desperately need adult company, and have to override my frustrations when Matt repeatedly returns home from work later than he had intended.

It was his tenacity and perfectionism that had attracted me to him in the first place and now, a few years on, I find myself admiring and despising these qualities in equal measures.

Last week, Matt was offered a new job.

One that pre-Jenson, we would have celebrated and welcomed with absolutely no reservations.

It is the success story that he mapped out all those years ago when he buried his head in those text books for years on end.

We have deliberated over whether he should take the job, mainly because of the fine balancing act we feel that we are already treading.

It will involve more travelling, later shifts at the office, and more responsibility.

Less flexibility to attend appointments, and less capacity to mitigate my emotional requirements.

Matt adores his evening cuddles and snuggles with Jenson, and his morning drop-offs at the nursery.

He tries his best to get to the gym and play football each week.  

He would most likely be surrendering all these things.

Not to mention further depleting the time we spend together in the evenings, catching up and taking stock of our busy lives, and giving each other the love and attention that we need.

We already struggle to maintain the equilibrium now, so we are both worried what the future may hold.

I am an emotional liability most of the time these days and I know that Matt is very conscious of doing anything that will rock my instability any further.

We decided that Matt should turn down the job.

It was a hard decision, but I think it is the correct one.

The time will come when Jenson’s needs become less, and I think we will know then that the time is right.

This decision making exercise has shown me just how having a special needs child impacts so extensively on every member of the family.

It makes me realise that Matt needs my support as much as I need his; he carries a larger emotional burden than I credit him with.

It would be easy for me to use all my energy on Jenson but the truth is that despite his outer strength and resilience, Matt warrants a good share of it too.

So this post is for all the daddies out there that carry such a weighty burden of responsibility and who carry on regardless, for the sake of their beloved families.

Screen Time – A Life Saver for Special Needs Parents

When we are out, I see how you look at me and judge my parenting because my child is watching a video while we eat.

I see how you shake your head and whisper about how I must a very lazy parent to not just engage with my child while we eat.

I see it all, and I am screaming inside that I see you.

I know you are judging me.

Prior to having my son with special needs I was the same as you.

When I saw parents allowing their child to do this, I would think the same thoughts.

Then I was given a child like Von.

You see my child was born with a complex disease.

The disease nearly killed him when he was 3 months old.

He had not yet been diagnosed, and he spent a week on life support clinging to life as doctors tried to figure out why all his organs were failing.

When he finally got diagnosed, the damage was already done.

He had prolonged blood sugar for more than 48 hours, and it dipped as low a 7 when he was the most critical.

A blood sugar of 7 would kill most people.

It did not kill my son, but it did damage his brain.

Doctors told us, “Your child will never be Einstein”.

They talked about, “learning disabilities”, and, “developmental delays”.

He was just a tiny baby then, and at the time I ignored it.

He started growing, and the further and further he fell behind his peers.

He seemed to respond excessively to movement, and he would avoid touch and texture.

He would become obsessed with cars, trains, and trucks.

While other children were playing with toys, my son was itemizing them, lining them up, and organizing them by type.

He didn’t know how to play, he didn’t know how to socialize, and he didn’t know how to eat.

We tried everything.

Every single thing you can imagine, every food, every technique, and there was always a strong pursed lip and head shake when food came close to his mouth.

Then one day we gave him a phone.

He was able to distract himself with the entertaining clip on YouTube or silly dog video.

We could sneak the bites in and encourage him to chew.

After months of exhausting so many possibilities, we sought therapy with professionals to help.

The therapists said “your child has Apraxia of Speech, Oral Apraxia, Severe Oral Aversion, and Sensory Processing Disorder”.

I looked at the therapist and had no idea what any of that meant.

They explained that he is so overwhelmed by all the things around him that he cannot effectively process motor movements in his mouth, he is unable to chew and swallow because he can’t coordinate his in his brain, and the only way he can do any of this is if we make the process automatic versus planned.

It finally made sense.

All this time, and all those judgmental looks from friends, family and strangers, and I had somehow known my child well enough to know he had to be distracted.

If Von had to plan it on his own, his brain cannot do it.

He cannot chew if he has to think about it.

He cannot speak if he has to think about it.

Everything must be spontaneous or he has to be significantly distracted by other things to do very basic skills.

I asked the therapist if it was OK for him to watch a screen while he ate.

She told me he has to eat, and until we can help him learn to master this skill on his own, everything in our home should stay status quo.

We should not interrupt meals and expect him to sit still and eat without distraction.

He needs distraction to eat.

I felt validated when she told me I wasn’t being a bad mother for allowing this behavior.

However, it doesn’t mean those looks I get when we are out don’t sting any less.

I know people think I’m a lazy parent, and judge my choices.

I see the comments on social media, and no matter how hard I try to not let it effect me, it does.

Parents of children with oral motor processing disorders, have to do things very different.

It wasn’t even something I knew about before being a parent.

I didn’t realize how hard it was to chew and swallow.

I didn’t realize that touching textures would be so hard for my child that he wouldn’t feed himself.

I had no clue that he would lack coordination to lift a spoon to his mouth to feed himself.

I know it looks strange to see a 3 year old be spoon fed by a parent, or to see me fight him to open his mouth to eat.

Or when you see me put my finger in his mouth to scoop out the bolus of food from his cheek, I see those looks too.

What we are doing isn’t normal.

However, we are doing our best to allow him to grow and thrive.

We are all determined to help him learn to eat, because a feeding tube would be a huge step backwards.

Next time you see a parent out like me struggling with their child to eat, instead of judging, maybe give them a sympathetic look or a high five and tell them you understand.

Let them know you aren’t judging them.

Eating disabilities are real.

They are very hard on all members of the family.

Be compassionate and remember we are all just doing our best.

Raising a Child with a Disability: When People Ask, “Will She Ever…(Eat/Walk/Talk/Sit Etc.?)”

We want to know that we can make it better and that everyone can be as happy as they deserve to be in life.

So, quite often, when people come across families like ours, where profound disability is involved, it is quite typical for them to want to know, “Will she ever, (insert verb here)” – and that’s fine.

But when you actually live our life and you are that parent fumbling about on the special needs journey you see things from a very different perspective.

You see I am very much at peace with Amy’s cerebral palsy diagnosis, and you know what?

I think she is at peace with it too; she doesn’t know life any other way.

But what I cannot take is the prospect that she is in pain.

Did you know that 1 in 2 people with cerebral palsy experience chronic pain?

That’s the part I cannot accept.

For us, it will either stay how it is, or we will be pleasantly surprised.

As it stands (no pun intended) she is not currently able to walk, eat, speak, or sit.

So my answer to, “Will she ever..?” is as good as your answer really – who knows?

When given Amy’s diagnosis they forgot to hand over a crystal ball.

Instead, all I heard was, “Wait and see..” – the worst three words you could possibly put together.

Not walking? That’s absolutely fine.

Who said that the recipe for a good life is being able to walk?

Don’t feel sorry for them, we all deal with the cards we are dealt and we will all find our own happiness.

I know plenty of people living fulfilling, happy and independent lives in wheelchairs.

Who said that not being able to eat is the be all and end all?

Receiving optimum nutrition via a feeding tube is a fantastic way to ensure your body is getting essential vitamins.

Since when is talking the biggest must-have of the year?

There is absolutely incredible medical technology out there to make sure people like Amy can access places and live, “normal”, lives.

Since when is quality of life defined entirely by what you can and cannot do?

For me, quality of life is being loved, having shelter, having warmth and having a warm belly.

I know there are people who say they wouldn’t change their child and the disability that they have.

It’s a thing that is very personal to each person.

Amy has opened our eyes to an amazing world we never knew existed.

For me, I can’t answer that question.

She has taught us just how amazing every little thing we do really is.

She has made us work harder, she has made us more patient, more loving, more everything.

I just wish it didn’t involve challenges for her.

I don’t want her to be frustrated, I don’t want her to feel, “different” (we’ve all had that feeling at some stage and it isn’t nice).

She has so much to offer the world and she amazes me every single day.

She is doing things now that we never ever expected – you know she is pressing buttons on toys now?!

She is now making choices with her eyes when selecting a toy.

She now communicates, “more”, vocally in a very cute grunt when she wants us to sing another song.

When we sing she now sometimes joins in with her own little tune.

Amy suffers from severe GERD (very bad reflux) – even surgery hasn’t fixed it, nor does the copious amounts of medication she receives daily.

It makes me cry with joy to see her enjoying life.

We regularly try different formulas and blends, we meet constantly with dieticians/gastroenterologists, surgeons, pediatricians, desperately seeking solutions to this rotten problem.

Amy also is afflicted with very high muscle tone due to spasticity.

Her muscles contract and tighten against her will, her brain forces her shoulders back, her legs straight and tells her to extend backwards – quite strongly in fact.

These are the things I don’t like to accept.

I worry about future surgeries to relax muscles, I worry that these feeding issues will never end.

I worry about so many things. ALL related to her comfort.

Many of you who are following our story will know about the absolute feeding hell we are going through.

When feeding issues are bad – nothing happens.

Those of you who have been through that know it is pretty much one of the worst things ever.

Development stops, sleep stops, and the days are spent trying to pass the day until bed time.

It has been like this a lot lately.

I remember when we got a standing frame and I thought it was to help her to learn to stand.

People always think that.

Actually, it’s to help build bone density as Amy has some osteopenic bones and is at risk of hip displacement.

This is one of many examples of expectation management.

It’s not about teaching her to stand – it’s about ensuring she is safe and comfortable, it is about prevention of worse things.

So, when people ask, “Will she ever walk?”

“What do I really want?

I want her to be comfortable.

I want her to be happy.

I want her to have a set of close friends one day.

I want to be one of those friends.

I want her to have the same access to things that everyone else does.

I want her to not miss out on any opportunity in life.”

Well… “I have no idea. If she does walk…that’s great… if she doesn’t? We’ll get her the coolest wheelchair going.”

“I want her to be her and not feel any pressure to do anything she doesn’t want to and to learn at her own pace.

I don’t want her to feel she has to learn anything to impress anyone or for me to brag about – it’s about her development, for her, and no one else.”

Our actual main goals in life right now are: sorting out suitable housing for adaptations, improving the wheelchair we have, resolving respite hour issues, resolving major feeding issues (maybe surgery? Maybe a GJ tube?), more work on head control and tummy time, more work on independent interactions with toys, more work on communication, prompting and anticipation skills.

But when even one of these things is achieved… for us it is monumental.

So really? Walking? Nah. It’s much much smaller steps than that.

As long as we support Amy and try giving her tastes, continue with constant physio, work hard at helping communication via speech and language and switch adaptations etc then I know we are giving her every opportunity to achieve her optimum.

No matter what the outcome for our children we will all be bursting with pride no matter what.

Amy has endured more in her 20 months that most of us will ever encounter in our whole lives and I have such a huge amount of admiration and respect for her.

I wish I had her determination, tenacity and strength.

Everyday she teaches me how to be a better person.

Starting School: A Letter To My Son

It’s not *quite* how we imagined it would be, all those years ago, when you were still waiting to be born… we didn’t imagine you sitting in a lime green, fancy-pants wheelchair for example.

Or that instead of me driving you in, you’d be taken in by a wonderful family-run taxi firm, in their adapted taxi.

And I’ll be honest, that reality is cutting me in two right now but seeing you ready to go off on your next adventure I am also so, so proud of you.  Of the wonderful, loving, gentle child you’ve become.

Sweetheart, you are going to have so much fun at school!

You’ve already met your new teachers, as you had a brief few weeks there before the summer holidays, and I know that they adore you almost as much as we do.

I know you’ll be safe there, and happy.

But my darling, I am going to miss you so very much… while you’re having fun painting, swimming and out exploring with your new friends in the school garden, I’ll be sitting at work wondering how you’re getting on, and counting down the hours until I can leave and come home to see you.

Your Daddy and I don’t see your disabilities, we see you.

And so do your new teachers and friends.

And while I cannot promise that I won’t cry when you leave for school (although I’ll be careful not to let you see) I can promise that when you get home we’ll be there waiting for you.

Things may not be how we imagined or expected, but they are none the worse for that.

On the contrary, we are better people for it, and that my love, is all thanks to you. x

Look After Yourself – Raising a Child with a Disability

I was folding Oscar’s wheelchair down and lifting it into the car.

That is when I heard the shout.

It was one of the teaching assistants from Oscar’s school.

‘I know,’ I said, ‘but it is the only way I can get it into the car.’

Oscar’s wheelchair is like a big pram but it is not a pram, it is a wheelchair (as one of the other bloggers wrote about).

It is also very, very heavy.

I don’t actually know how heavy exactly but it is heavy.

I find when I am trying to put the wheelchair into the boot of the car I am twisting myself as well as leaning back to try and lift it better.

I know eventually, I may end up hurting myself.

My legs are already covered in bruises from just putting the chair up and down!

The fact that I am not very tall and have no muscles whatsoever does not really help my cause.

Her words made me realise though how much I do not think about my poor back (because it does ache) when I am lifting.

When I am lifting Oscar into the car to put him in his car seat, I am so busy trying to make sure he is not twisting, that I don’t bang his head on the roof of the car (because, I have done that a few times, bad mummy) and that I do not hurt him and he is comfortable.

I am not paying any attention to the fact that I am bent over, twisted, while half of me is in the car and the other half isn’t, if that makes any sense!

The same goes though for whenever I am lifting and carrying Oscar.

I am so busy making sure he is alright that I am not making sure that I am alright as well.

I am sure I am not alone with this.

But, if I hurt my back, then who will look after Oscar?

Hubby works full-time to keep a roof over our heads and I am Oscar’s main carer.

We cannot afford for me to have a bad back and be laid up in bed.

I need to start caring a little more for my poor back and thinking more about myself when lifting and carrying Oscar and his equipment.

Or lifting and carrying anything for that matter.

Please take some time to think about your own situation and how it affects you physically and see if there are any changes you can make.

Even speak to your child’s physio to see if they have any suggestions for you.

Who will look after our children, if we do not look after ourselves?

Mind your backs everyone!

23 Stupid Things to Say to Parents of a Kid with Special Needs (And 3 Brilliant Alternatives)

Hunter Syndrome is a life limiting condition for which there is no cure.

Ethan has hearing loss, vision loss, sensory processing disorder, autism, asthma, global developmental delay, physical disabilities and every organ in his small body is enlarged while his heart has a whole range of issues too…this is all down to Hunter Syndrome.

So as you can imagine we tend to get an audience on most of our outings.

Here is the list of advice, cures and all things meant as friendly chat – along with my, ‘general’ response. I am a very sarcastic person – worth bearing in mind before you read further.

1. “Bring sweets around in your pocket; every time he behaves give him a sweet – then he won’t be as long to learn how to behave.”

Should I pat him on his head too and tell him ‘good dog’?

2. “Can’t you give him a ‘smack’ (spanking) every time he yelps and he will soon learn to be quiet.”

Thank you, am I glad he is not your child.

3. “Don’t feed him until he eats what you’ve given him, put your foot down.”

Thank you, that is amazing advice, have you ever seen ‘Gremlins’? 

Ethan turns into one of them with no food, like I imagine any of us would.

I think I’ll just stick to feeding him whatever he will eat, thank you though.

4. “In my day, we put kids like him in a home.”

There is a village missing their idiot right now, you know it is OK to read a book once in a while.

5. “Tell, ‘that’, (referring to Ethan) to shut up.”

I cried at this one and eventually plucked up the courage to speak back.

6. “Seaweed, make him eat it; then he will be fine.”

Ammm; sure, Thank you.

7. “You or he must have done something bad in a past life to be dealt this hand, eh?”

Nope, doubt it; I’d say Ethan was a Bull and I may have been a Lion, with his charge and my roar, we probably made a great team.

8. “He is paying for other people’s sins, the poor kid.”

Are you serious? Are you serious?!

9. “If you pray more – you have no idea the power of prayer.”

Clearly, thank you.

10. “Your attitude could be holding him back, maybe if you were a tad more positive and hopeful, the drugs he is on could cure him, doctors do get it wrong.”

I am a very hopeful person, thank you.

Eventually, yes there has to be a breakthrough with research, will we see it in Ethan’s lifetime, I hope so – see all the hope I have?

And the drug Ethan is on has been through clinical trials, the doctors haven’t made a mistake.

What is your experience with medical research exactly?

11. “God is good; he gave you exactly what you could handle.”

Yeah sure, thank you.

12. “If you took care of yourself while pregnant this may have never happened.”

It is a genetic syndrome…I gave him the syndrome, I normally walk away after that.

13. “He needs fish oils; the cure is in that!”

Really? Thank you, I’ll get right on that.

14. “You don’t have more children, do you?”

I do, actually, I have seven more.

15. “Why is he in a buggy? I saw him running ten minutes ago…he is just being lazy and you’re worse for letting him.”

You are observant, aren’t you?

Thank you.

16. “Environment has a lot to answer for with these conditions no one has ever heard of.”

I generally smile and nod at that one.

17. “Two more boys – Really?! Are they like him too?”

They could be triplets, is my go-to answer.

18. “You should see the seventh son of the seventh son; he will cure him.”

Yeah, yeah.. thanks for that (Seventh son of a seventh son is folklore; apparently this son can heal the sick. Yep)

19. “If you ever need me, ring.”

I generally nod at this and thank them, the truth is you and I both know I won’t make that call.

This feels like an empty gesture; if you want to help, don’t leave it to the stressed out mom to contact you, pick up the phone or visit and insist on helping.

21. “I hope your partner/husband is helping too.”

A statement made by a stranger who saw my husband drop us to the hospital and had a chat with both of us.

When my husband left, they decided to make the above statement.

That right there is a judgment made in an instant; you are implying he doesn’t do his, ‘share’.

This is implied often to me and it really annoys me.

22. “Wow, he (referring to Ethan) kicked my son and you’re really going to play the Autism card? My nephew has Autism and he doesn’t act that way.”

Yeah, he is Ethan though, not your nephew.

23. “So how long does his condition last?”

I still can’t make sense of that question.

And a few preferable questions from children…

24. “Hello. What’s your name?”

Said to Ethan, not me.

25. “I like Homer too.”

Said by a child in a hospital waiting room while Ethan threw his , ‘Homer’, teddy around, the said child continued on by doing impressions of the, ‘Simpsons’, which made Ethan laugh and me cry.

26. “Here, do you want to look at my game?”

A child offering Ethan his iPad.

27. “I like your Teddy.”

Another child in a supermarket, while Ethan was trying to regulate himself.

Aren’t children wonderful?!

I haven’t always been able to laugh at the things people say to me; nor have I always been collected, calm or sarcastic in my answers… I do all that now for fun.

It has taken me over 10 years to be able to deal with this kind of, ‘observations’, ‘statements’, and, ‘advice’, in an amusing manner (amusing to me at the very least!)

It is simple; take a leaf out of your child’s book when talking to or about another child or adult living with any sort of syndrome or disability.

Thank You For Being the Best Big Brother – Raising Children with Disabilities

What I did not know, was that the day I made you a big brother, you would leave me in awe at how amazing you took to being a big brother to a sibling with a disability.

The day we told you that you would now be a big brother, we explained the duties that came with that position.

We explained that you would have to teach him the ways of the playground.

If he left the seat up, you would have to teach him that Mommy likes it down.

You would have to let him play with and possibly try eating your old toys.

In turn, I remember you expressing how excited you were to teach him karate.

How curious you were, about what he would look like when born!

Would he get your kind, honey brown eyes?

Or maybe share your energetic spunk?

Like the life growing in my belly, it grew in your eyes with all the possibilities he would bring.

I never thought there would have to be a day where I had to explain to you that your brother might not be able to run around with you outside.

I never expected to have to depend on you to be strong for me, because I had the ugliest of rainy days trying to bring me down.

Now that your little brother is here and things are a lot different than before, I just wanted to say thank you.

Thank you for understanding that some days he may need more attention and extra care.

Thank you for being so patient when you tag along to his doctors appointments.

Thank you for showing him unconditional love, that has never been affected by his diagnosis.

I thank you for pushing him around in his wheelchair to give him that same breeze through his hair, that he would feel while running.

Thank you for pushing him to dream big!

I even thank you for sharing his story with strangers you just met while standing in line at the grocery store.

To me this shows that you aren’t afraid of what people think, nor are you scared of his diagnosis.

You may not always be the first one I tuck into bed at night, or the one I spend a little extra time bathing…but you are always on my list of people I thank the Lord for.

Each day that passes, you go above and beyond to love Oliver for himself.

I am humbled to watch you grow into a strong, loving, and independent man with each day.

So if you ever feel like you aren’t appreciated…. you are!

You are still the sunshine to my rainy days.

You are the reason behind Oliver’s giggles.

You are the perfect big brother I always knew you would be!

Thank you, Aaden. <3

Daddy’s The One That Makes Her Laugh – Raising Children with Disabilities

With my husband and my daughter, it’s clear to see the heart-holding is mutual.

My daughter is a spunky, happy, loving four year old.

Although she is small, she has a joyful personality that is larger than life.

She also happens to have very special needs.

There are mountainous hurdles that she must overcome every day.

Her Daddy is a Triathlete that pushes his body to the limits…she has his same dauntlessness and tenacity.

She can be sitting perfectly still and content playing her little piano, until her Daddy walks into the room.

Her happiness then can’t be contained!

“Da-Da” is the only word she speaks, and she says it with excitement, very loudly and deliberately, when he’s in view.

When he is sitting on the floor with her, he is her jungle gym.

I watch them closely…she reaches up and touches his face.

They look at each other, having a whole conversation without uttering a word.

He calls her a silly name and she erupts in belly-shaking, breathtaking laughter.

The interaction between them is beautiful and I never grow tired of watching it.

It is an ongoing joke (truth) in our house…she loves her Daddy best!

I will try my hardest to earn a smile or a giggle; he elicits them with ease, effortlessly!

All he has to do is look at her or call her name and she goes all starry-eyed.

It is obvious how tightly they hold each other’s hearts.

There are often times that my heart aches for him and for the typical father/daughter moments that disability will take away from them.

The traditional father/daughter dance, planning for college, buying her first car and walking her down the aisle are all milestones of life that are heartbreakingly unfeasible.

Those topics are ones we don’t talk about often.

They are a part of reality that we can’t dwell on.

They’re acknowledged and pushed out of our minds for now.

Our thoughts never tarry there.

Seeing this duo together, I witness wonderful moments unfolding before me.

And I look forward to all those ahead that they will experience together…moments that fathers of typical daughters could truly never understand or fully appreciate.

She will hold his hand a lot longer…he will sing her lullabies and rock her to sleep longer…she will reach her arms up to him for snuggles and cuddles longer….he will make her laugh until her face is bright red, with a single look, longer.

He will remain her undeniable hero and her fierce protector for much longer.

What society deems as imperfection, makes her all the more perfect to her Daddy.

Theirs is truly a love like no other.

Every day I am lucky to watch her with the one that makes her laugh.