Therapy Pets: Service Dogs

Of the furry, canine variety.

Merlin, an 11 week old golden retriever, arrived from the service dog charity a week ago and is settling in well, however it really DOES feel like we’ve got a newborn baby all over again!

He needs house training, we’re up a couple of times in the night to let him out to pee, teaching what is acceptable behaviour and what isn’t, and how to play nicely (i.e. no nipping).

And it is overwhelming.

More than once I’ve asked myself if we’re doing the right thing bringing a puppy into our lives, especially as Sam can’t get out of the way of nips when Merlin is overly excited to see him and wants to play.

Hubster put it perfectly; we never had a, “normal”, baby, we’ve never had to deal with potty training or with the more usual behavioural issues which afflict toddlers and their parents.

It has come as an incredible shock.

It’s also raised a lot of feelings and thought which I didn’t really want to resurface.

I have ultimate respect for those who have more than one child – hats off to you guys.

For now, Merlin is starting his training to become a seizure alert dog/guide dog with basic socialisation and obedience training (he has a long was to go on that front), but over the next 12 months he’ll be trained to respond to Sam’s seizures and to alert us so we can keep our little boy safe.

In short, Merlin will be Sam’s constant guardian, companion and best friend.

For now, he’s a lovable ball of fluff fast asleep by my feet having just dunked his flurry noggin in his water bowl to cool down!

Like everything, in the special needs world, when things are going well it is fabulous, but things turn in a heartbeat.

We’re incredibly excited about Merlin’s potential, and about training him up as a service dog but at the same time like anything that worth doing, it’s very hard work.

Add that to the sheer exhaustion and frayed nerves that we all live with daily and it’s easy to lose sight of the here and now.

It’s also very easy to be bogged down with thoughts like, ‘If only he didn’t have these disabilities – we wouldn’t have to DO this!’

I am currently countering those thoughts with the mantra nothing that’s worth doing is going to be easy, and it’ll be worth it in the end.

Training Merlin will be difficult and I have no doubt there will be tears and doubts but it’ll be worth it to give Sam that loving companionship that only a dog can give.

In fact, he has already shown his worth on a recent trip out…

Last week, we attended Twycross Zoo’s Dream Night, an evening where the zoo opens its gates out of hours for disabled children and their families to enjoy.

After checking that it was OK to bring him, Merlin came along with us.

Towards the end of the evening Sam had a particularly nasty seizure which left him twitchy and miserable.

Merlin was exhausted after running round like a loony on his lead trying to fuss EVERYONE in sight so we scooped him up and plonked him on Sam’s lap in his wheelchair.

The change in Merlin’s manner was immediate – no longer the bouncy, overexcited puppy, he calmed down immediately and lay down gently on Sam’s lap, gently licking his young master’s hand.

Sam responded by resting his other hand against Merlin’s fur and we watched as our little boy visibly relaxed.

I’ve said it before and I’ll say it again – animals have an understanding and magic about that that humans simply lack.

Merlin stayed in that position for the remainder of the evening, every so often checking that his young friend was OK.

If this is a sign of things to come then we have most definitely made the right decision.

Special Needs Parenting: Never Hearing, ‘I Love You, Mummy.’

As the parent of a non verbal almost 3-year-old, I worry quite a lot about his (lack of) speech and communication.

You know, simple things, such as how will he greet people if he can’t say hello?

How will he ever make his needs known to others if I’m not around to interpret his body language and facial expressions and explain them?

How will he ever make friends when he can’t join in their conversations and games?

Throughout the day my son keeps me busy enough not to pay attention to others and their children.

But when he goes to bed and I have the time to get on Facebook, watching videos of friends’ children playing away with others, babbling or talking.

Looking at pictures with captions stating how their child had said, “THE funniest thing today”, or, a status where they’ve written about a cute conversation they had with their child before bed where their child has unexpectedly said, “Night, mummy, I love you.”

It’s a harsh reminder of just how different he actually is.

Those four words, I had somehow managed to block out, I rarely thought about them.

I mean, how many other 3-year-olds told their mummy they loved them?

(I kept trying to tell myself I was right there).

It soon became apparent that I wasn’t right at all.

The more I see other neuro-typical kids, the more I realise how much Aj, ‘should’, be saying by now.

A quick Google tells you – “By age 3, a toddler’s vocabulary usually is 200 or more words, and many kids can string together three- or four-word sentences.

Kids at this stage of language development can understand more and speak more clearly.

By now, you should be able to understand about 75% of what your toddler says.

200 words?!

That’s a LOT of communication we’re missing out on.

And the part about understanding makes me feel like such a failure, I can barely interpret his subtle facial expressions some days.

I should be able to read his signs by now.

He changes so often though, it’s quite hard to keep up!

I wake up from dreams wanting to cry because he could talk in my dreams, I could hear his voice, we could play and have a conversation.

But then I woke up.

Back to reality where the only vocalisation that comes from my son is crying.

I worry, a lot.

What if I never hear him say, “I love you, mummy!” how will I ever know how he feels about me if he can’t tell me?

One of my Dad’s friends asked me not long ago, “When will he talk?

A simple, harmless question.

That question hit me like a ton of bricks.

I’m not sure. He might not,” I said.

And their reply?

Aww (with a pitiful look on their face) he won’t be able to say, “I love you mummy,” will he?” I had to reply, ‘No.’

My heart ached.

Although I know worrying won’t change our future together, I still think about it, a LOT.

My son is starting at a special needs school in September, I recently spoke to their communication teacher and speech and language therapists, they’re excited to work with him.

I’m excited to see how they can help him and hopefully find a way for me to communicate with my boy.

For now, I’ll take the stream of dribble running down my arm as I write this post with my son falling asleep on me as a sign, his sign.

His sign that he loves me and trusts me to keep him safe whilst he sleeps.

Speech Therapy: Communication – The Hard, Slow Revolution

Miss Z is non-verbal.

This doesn’t mean she isn’t able to communicate – in fact, she can be surprisingly effective at getting her point across.

As I regularly assure therapists, nurses and doctors, if she doesn’t like something, she will lose no time in letting you know.

Those who spend a lot of time with her can also understand when she’s happy, very happy, bored, in pain or frustrated, mainly through a combination of the tone of her voice and her actions (arm waving and head shaking are happy signs, ear scratching and hair-pulling mean unhappy).

Miss Z also has very limited use of her hands.

She can’t independently isolate one finger from the rest (for example pointing or giving a ‘thumbs up’) and can really only do big, gross motor movements.

For this reason, sign language isn’t very successful for her.

She is able to do a few basic signs and understands several more if she is doing body signing (where we do the sign together), but it is never going to be her easiest or preferred mode of communication.

So, this is where our Communication Revolution begins.

We need to find a system of communication that works for Miss Z.

Augmentative and Alternative Communication (AAC) is the term used to describe various methods of communication that can ‘add-on’ to speech and are used to get around problems with ordinary speech.

AAC includes simple systems such as pictures, gestures and pointing, as well as more complex techniques involving powerful computer technology.

We have started with an iPad and a few basic communication apps.

One of the greatest challenges so far has been finding something that motivates Miss Z enough to actually try to communicate with us through the iPad.

With many children learning augmentative and alternative communication (AAC), food is a great motivator.

Miss Z is completely tube fed, however, so we have settled on some of her favourite activities instead: bouncing, swinging, listening to music, and watching cartoons.

At the moment, her communication choices are limited to which activity she wants to do, and then choosing the song, cartoon, or how long and how fast she swings or bounces, as well as a choice of “finished”.

She can also choose, “yes”, and, “no”, for other types of questions.

We have only just started and for the moment the results are limited.

There are times when she seems to intentionally make choices.

For example, she repeatedly played the Frozen song, “Let it go”, after a nurse commented how much she disliked the song.

However, there are other times where she just isn’t engaged, and even if she does make a choice, I suspect that it was more accident than intention.

With the question of how effective she will be using her hands to make communication choices, we are also planning to have her assessed to see if eye gaze technology might be a better fit for her.

This has been particularly successful for children with limited hand use – such as girls with Rett Syndrome – so it is an exciting prospect.

Whatever communication system we ultimately choose, there isn’t going to be a miracle moment where Miss Z suddenly starts discussing world politics with us, or declares that actually she deeply resents having to wear her sister’s hand-me-down clothes.

Instead, it is going to take a lot of dedication, persistence and work to help her to begin to communicate.

It means giving Miss Z the time she needs to organize herself to communicate – something that can take five minutes or more at the moment.

It means using augmentative and alternative communication all the time in all our interactions – with me modeling it and encouraging Miss Z to respond.

It means forcing her sister to be patient and let her sister make up her own mind.

It means teaching everyone who interacts with Miss Z how she communicates – and making sure they encourage her to use augmentative and alternative communication to respond.

Communication is, without a doubt, the most valuable thing we can give to Miss Z.

If she can communicate, she can gain a measure of control over her life – which will improve her quality of life and her happiness exponentially.

Unlike some revolutions, it isn’t going to happen overnight.

Nor is it going to be easy.

But in the end, it will be worth it.

Special Needs Families: Wills & Trusts

​Ask me today, in my thirties, what I would like most and I’d say, ‘A long and healthy life so I can be here to look after my disabled son.’

It’s safe to say I was a planner and up to my late twenties, my life pretty much went to plan.

Everything fell into place just as I hoped it would.

A few disastrous jobs along the way and bit more student debt than I had planned for but by 28 I had a degree, I had travelled, I was married with my own home, a crazy Labrador, a job I loved and I had just given birth to first child, a gorgeous little boy.

Life was good.

I got busy planning again for baby number 2 time and if truth be told even thinking about baby number 3.

A perfect family.

Then life got a little bit complicated.

My beautiful first born son was diagnosed with Global Developmental Delay.

In the first few months after this diagnosis I quite easily brushed it to one side because little boys are lazy and they all catch up eventually – Right? Wrong!

Fast forward a few years and those Global Developmental Delays turned in to Profound and Multiple Learning Difficulties.

With that my planning went out the window as we learnt to cope with our new life.

You know, it wasn’t always bad – we learned to go with the flow, fly by the seat of our pants.

But there was always this little itch, you know like the one you can’t reach right between your shoulder blades.

We didn’t have a Will.

This didn’t sit well with me.

I wasn’t thinking about the future.

I was living day to day. We weren’t prepared for the future – for our disabled son’s future.

What would happen to him if something happened to us?

The thought was enough to bring on a pain in my chest, a shortness in breath.

I couldn’t simply push this to the back of mind because everyday it was my job to encourage people to write their Will, let their loved ones know their wishes and remember the charities that are important to them.

I was a Legacy Fundraiser for a large national charity.

Yet here was I, parent to a child with special needs with NO Will.

So, we set a date – a New Year’s Resolution in fact.

In the month of January we would make our Will.

We began by attending a Mencap Wills and Trusts Event.

A free information event on how to take care of a loved one with a learning disability.

A local solicitor is present with experience of making Wills and Trusts for the benefit of people with a learning disability and you have an opportunity to ask questions or listen to the questions that other families ask, which is what we did as we sat quietly in the back row.

We then made an appointment with a Financial Advisor to see what we could realistically afford in terms of Family Insurance and Savings.

We then made an initial appointment with a Solicitor, a Solicitor who specialises in Wills and Trusts.

The same solicitor who presented at the Mencap Wills and Trusts Event.

I think at this point I realised why we had delayed making a Will.

Because we have no guardians for our children should something happen to us – no one to fall naturally into this role.

No one that we felt comfortable enough to ask to take on this huge role.

I don’t think we’re alone in this situation.

It’s desperately frightening.

But the Solicitor reassured us that it was still important to have a Will in place.

She helped us with every aspect.

I can’t say it wasn’t emotional, I did cry but our Solicitor’s practical, straight talking manner guided us professionally through the Will making process required when you are a parent of a child with special needs.

We now have our Will in place, a discretionary trust and a Letter of Wishes stating what we would like to happen if my husband and I died.

For now this has covered things like what we would like to happen to our family home, how we would like our children to be cared for and the sort of material things we would like them to have.

It’s not perfect, we still have no nominated guardians.

But, it’s the best we can do and I can live with that.

We will continue to review our Will, make changes as our children grow and our situation changes.

If you live in the United Kindgom and would like to attend a Mencap Wills and Trusts Event -visit their website.

We also received help with a Cerebra Wills and Trusts Voucher, which is a £350 voucher towards the cost of having a solicitor prepare a Will and discretionary trust to make provision for your child’s future.

For more information on the Cerebra Wills and Trusts Voucher visit their website here.

What is a Will?

A Will is a legal document that gives instructions about what should happen to your money and possessions after you die. It must be signed, dated and witnessed by two people.

What is a Discretionary Trust?

A discretionary trust is a trust where all decisions about payments of income and capital are made by the trustees, to a class of beneficiaries (more than one).

What is a Letter of Wishes?

A Letter of Wishes is an informal letter, signed and dated by you and addressed to your Executors that you can write or type yourself.

Unlike the Will, the Letter of Wishes does not become a publicly available document on death and therefore should be kept with your Will.

It does not require witness signatures.

It can be used to assist or guide your Executors on pretty much anything you wish (hence the name).

A Letter of Wishes is an opportunity for a parent to leave instructions regarding their children for example religious upbringing, education, residence and so on.

These can be recorded and updated in a letter kept with the Will, but reviewed regularly as the children grow up and their needs and circumstances change.

Children with special needs are particularly important, and the Letter of Wishes may lay down guidelines which stretch into the adult life of that person.

Dangerous and Annoying Epilepsy Misconceptions

Some common misunderstandings surrounding epilepsy are innocently annoying and a nuisance yes, but they’re made by ignorant people who just don’t know any better like –

Epilepsy is contagious or it’s a mental illness

Other myths are just down right horribly dangerous and even potentially deadly like –  Epilepsy is really a demon possession

My daughter who has suffered with an uncontrolled seizure disorder for fiftteen years, has been the victim of some outrageously ignorant statements and even false accusations concerning her experiences with epilepsy.

The following two mistaken beliefs in particular have negatively impacted my daughter’s well being and could have had disastrous results or even been fatal!

• Epilepsy is not really a problem today because there are many effective medications and treatments available that control seizures.

The fact is that approximately 150,000 Americans have epilepsy and 30% of them do not have complete control over their seizures despite having tried all the seizure medications available, different combinations of medication cocktails, surgeries, and having seizure devices implanted.

In the UK 600,000 people have epilepsy and 48% of them do not have complete seizure control.

• You cannot die from epilepsy.   Yes, frighteningly so, you can die from having a seizure.

This is called SUDEP or Sudden Unexpected Death in Epilepsy.

The cold, cruel fact is that every year 1 out of 1000 people who have epilepsy will die unexpectedly while having a seizure. If seizures are uncontrolled the risk of SUDEP increases to 1 out of 150.

That’s too many  people dying from epilepsy!

Share this link to help raise awareness of Epilepsy: The Facts

Thank You For Treating My Daughter Like A Superstar

Normally, I walk into her classroom each day, chat with her teachers for a moment, then we head on our way.

Today was an exception, and I have felt completely indebted since we left.

Ryleigh’s classroom is designated the “PMD” class.  This acronym sounds much more pleasant than the actual name: Profoundly Mentally Disabled.

She transferred to this class recently from a Special Needs Preschool class.

In the Preschool class, she was the least “abled” of any student and really wasn’t on track with any of her peers.

They could run, jump and do things that I could only imagine someday seeing her achieve.

But, the liveliness of the children gave me hope for her.

When she transferred schools, the label of PMD was seriously hard for me to swallow.

How despairing and hopeless it made me feel.  I wanted to cry on the first day of her transition.

Until I opened my heart and my mind and saw this amazing class in action.

Her new classmates were beyond charming!

The room was filled with an array of adaptive equipment that would accommodate her needs.

There was a bounty of special toys that would challenge her to meet new goals.   In a short time, I had renamed it the Positively Motivated and Determined class!

Inclusion is a key part of her day in the new class.

She spends time with a typical Kindergarten class.

Her teachers (who are marvelous, by the way!) have been sharing with me how much the kindergarteners adore Ryleigh and how she loves interacting with them.

From the start, this sounded like a fantastic concept to me!

They were teaching empathy and acceptance to kindergarten students, while making my child feel included.

When I arrived to pick her up at school today, I was greeted by several five year olds from the kindergarten class –dancing, laughing, smiling and enjoying ice cream by the playground.

Nestled in the middle of this handful of boys and girls sat my daughter, in her wheelchair.

Her teacher was feeding her ice cream while these children lovingly hovered over her.

As I approached, one student asked if she could feed Ryleigh.  One little girl asked if Ryleigh could go home with her.

Another was telling Ryleigh a story and making her laugh.

Not only were they interacting with her, they LOVED her!

One sweet child asked if I was her Mom. Then she said to me, “she is pretty, just like you.”

I felt a tear stinging my eye.

No one was staring at her being spoon fed.

Nobody was laughing at her wheelchair or pointing at her leg braces.  She was laughing with them and she was being included in the fun.  She wasn’t an outsider looking in.

They were focused on HER and they brought the party to HER.  They were her friends!

A child told me that she wished Ryleigh was her sister.  As I listened to them and watched them admire her, I admired them right back.

They treated her like she was a SUPERSTAR.

My heart was moved and my soul was elated.

For their kindness and acceptance, I was so very grateful.

Thank you, compassionate little ones, for not only being my daughter’s friends, but also for making her feel like a superstar.

Grieving the child I could’ve had… What if?

It’s a place I try not to visit too often as I don’t like all of the questions and self doubt that it brings. Watching my almost 3-year-old crying and screaming until he’s physically sick, hurting himself, pulling at his clothes and scratching his face during one of the worst meltdowns he’s ever had, I wondered, am I doing something wrong? Is this my fault?..

What would he of been like if he had never suffered a brain injury?

Would our days be the same? Or full of laughter instead of constant crying!

Would our nights be more enjoyable, would he sleep!?

Would he be able to run, jump, climb?

Or even walk in a straight line without falling over with every other step?

How many words would he be saying already? – would he say “I love you mummy”, the four words I fear I’ll never hear?!

Would he be a happy little boy?

Curiosity gets the better of me when I’m in this mood…The questions keep coming.. I know he definitely wouldn’t have the physical limitations and cognitive issues he has now if it wasn’t for the damage to his brain. I feel guilty, guilty I’m even thinking about it. But seriously, just what if?

What if we could go out for dinner without having to worry about how overwhelming such an environment could be for Aj?

What if we could go for walks in the park together, running and playing?

What if we could have a conversation with each other?

What would his little voice sound like?

What would it be like to actually enjoy a day out as a family with no tears?

How would we fill our days when we wouldn’t have appointments day in day out?

How would it feel to not count the hours until bedtime?…

Now that one, that one makes me feel awful.

But on days like today I do find myself checking the time, how many more hours until bedtime?

How many more hours of the constant meltdowns? Now Aj is in bed and I’ve had time to sit and reflect (and by reflect I mean stomp my feet and have a cry), I understand it’s okay.

It’s okay to feel like this some days.

It’s completely normal.

I can’t change the past, all I can do is try again for a better day tomorrow.

Try to avoid even more things that could trigger a meltdown and carrying on living in our new ‘normal’, even though it does change quite often! There’s always going to be bad days, I just can’t wait for the time that our good days will outweigh the bad.

Having just searched for the definition of grief, it’s made me think, our situation could be a whole lot worse, I could’ve lost him when the Doctors predicted he wouldn’t make it.

But he’s here, and he’s mine, and I’m thankful for that.

That being said…Would I change him if I could? Yes. 100%.

I’d change everything I could just to make him happy. Everything I could to help him enjoy his life.

noun 1. 1. Grief intense sorrow, especially caused by someone’s death. “she was overcome with grief” synonyms: sorrow, misery, sadness, anguish, pain, distress, agony, torment, affliction, suffering, heartache, heartbreak, broken-heartedness, heaviness of heart, woe, desolation, despondency, dejection, despair, angst, mortification.


What a Mouse Taught Me about my Son with Special Needs

Dr. Elsea’s lab evaluated mice that were born with the same rare syndrome as my son.

Smith-Magenis Syndrome (SMS) is caused by a deletion of genes within the 17th chromosome.

In some cases, one single gene is mutated.

I had met other people with SMS and witnessed the similarities: facial features that include a flattened mid-face with wide set eyes, behaviors like explosive outbursts and self injury, and a severe sleep disturbance that causes nighttime awakenings and daytime napping.

But, what would SMS look like in the mouse world?

Do you think the SMS mouse is sneaking into his sister’s nest at 2am and taking her video games?” I asked my husband.

Or maybe, he has a little mouse meltdown when the momma mouse turns off his Barney video.

Apparently, my husband did not find my questions nearly as amusing as I did. He tried to shush me, but I was on a roll.

Do you think the SMS mouse slaps his head with his mouse paws when the momma mouse fires up the blender for a much needed Adult Mouse Beverage?” He gave me a dirty look. “Don’t judge. She has a whole litter of babies and one of them has SMS!

When Dr. Elsea began her presentation, I learned that her lab found many similarities between the SMS mice and the human SMS population.

Features: The SMS mouse had a shorter snout when compared to his siblings.

Weight Gain: They found that the mice born with SMS had more body fat and higher cholesterol levels when compared to their siblings.

Obesity is a common problem in the SMS population.

Sleep: The SMS mice had trouble falling asleep and staying asleep.

Behavior: SMS mice were not slapping their heads or crying over T.V. shows, but the researchers had a way to test for dominance. They placed two mice inside opposite ends of a plastic tube.

A SMS mouse would face a typical mouse and the researchers would wait to see which mouse forced the other one to walk backwards. Apparently, mice do not like walking backwards.

(I have noticed that mice run in panicked circles when I’m standing on a kitchen chair and screaming, “There’s a mouse! There’s a mouse!”)

Dr. Elsea shared with the group that not a single SMS mouse went backwards in this experiment. That’s so like our stubborn kids and she got a loud round of applause from the parents in the audience.

As she went on, I found some of the material a little heartbreaking.

Pain Tolerance: The researchers placed all the mice on a hot plate and slowly turned up the heat. The typical mice jumped off the plate before they were burned; however, the SMS mice did not.

My son has a very high pain tolerance. It seems like a blessing (because who wants to feel pain?), but pain is what keeps children from hurting themselves.

Garrett has picked his skin, torn off a fingernail and burned his hand on the stove. It makes sense that the same thing would happen with the SMS mouse.

Still, as a mom, I found it a little sobering.

But, when Dr. Sarah Elsea got to the final piece, it completely changed the way I viewed my son’s disability.

Star Gazing Seizures: Dr. Elsea played video footage of a SMS mouse running around in its cage when suddenly; he was startled by someone knocking on the glass.

I saw the mouse stop in mid-motion, look up and freeze for 3 or 4 seconds. Dr. Elsea called it a star gazing seizure.

I was out of mouse jokes.

Instead, my mind played back the times Garrett cried when I fired up the blender… or when the church organ began to play… or when the lawn mower roared by the window. We called it Freaking Out.

Certain sounds, not necessarily loud sounds, would also cause Garrett to Freak Out: sounds like Velcro straps ripping, the fizzing noise from a soda can or water being squeezed out of a cloth.

Garrett just stopped whatever he was doing… stood straight up…tilted his head back and screamed at the top of his lungs. His arms would flail out; either hitting himself or people/objects around him.

In the daily tasks of parenting a SMS child, I am constantly trying to stop him from hitting other people, hurting himself or breaking everything around him.

Garrett’s “fight or flight” response spikes and my “keep-things-calm-at-all-costs” reaction takes over. I often write about those days.

I talk about how hard it is to parent a child with Smith-Magenis syndrome. And it is.

But I don’t spend time thinking about how these explosions must feel for Garrett and I was shaken by the photo of a “star gazing” mouse projected on the screen.

I can only imagine that these genetically driven behaviors which start at the most basic, cellular level must be ten times harder for him than it is for me.

My heart filled with empathy for my son.

It was a life changing lesson, delivered by a mouse.

“I’ll Take Care of Her When You Get Too Old” – Raising Children with Disabilties

This worry can consume you, if you allow it.


What if something were to happen to me and my husband?

Who would be there to take over our crazy day-to-day activities and provide all the unconditional love our children deserve?

Who would we entrust to be there to fill our shoes?

Honestly, NO ONE.
For us, it’s too scary talk about, or even think about.

We can’t imagine leaving them behind without us here to care for them.


Growing old and being unable to care for our children is another valid burden that we carry.

My eleven year old is highly intelligent and has a gentle, tender heart.

He is also on the Autism Spectrum.

While, I envision him going far in life, and can see him as a brilliant Scientist someday, a small part of me also harbors worry for him.
They have a bond that is quite amazing and she adores him equally.

He loves his little sister dearly.


She has intellectual and physical disabilities that impact every aspect of her life.

At four years old, walking and talking are goals that we work fervently toward.

But, the fact remains that she will need someone to care for her, always.

As her parents, we want to be the ones to be here for both of them and to provide the very best care for them, FOREVER.
His statement melted me into a puddle.

While playing with his sister one afternoon, my son looked at me and said something to me that stopped me in my tracks.


He said, “Mom, I’ll take care of her when you get too old.”

I was caught off guard and wondered how this little guy could see into his Mom’s soul, and know the worries that I keep quiet from everyone else.

I told him that we would never want to place burden on him and that he was way too young to worry about that now.

He went back to playing with her and said nonchalantly, “Ryleigh, you can live with me when I grow up.”
I saw a glimpse into my son’s heart that day.

As a mom, you want your kids to play well together and to get along.


It made me understand the true breadth of his love for her.

Although I try to push these future thoughts way back in my mind for now, I feel secure that he would never leave her behind.

I am assured that no matter what his future holds, he will see to it that she is taken care of.
Try not to let the worries about tomorrow take away your joy today.

One piece of advice I have for other parents of special needs children that bear these same woes: live life day by day, and just live in the moment.


There are beautiful moments before you; don’t let future worry steal them away from you.