Exclusion Of A Special Needs Sibling

“Oh he’s so cute! Hello!”

“I LOVE your wheelchair, is that the Gruffalo on your wheels!?”

Just a couple of things that was said to me and my 3-year-old son when we were out today at the shops.

Luckily he loves the attention and was more than happy to talk to these people, and the others who come to say hello.

My son has quadriplegic cerebral palsy and is unable to support himself so he’s always in his wheelchair when he’s out.

I am a very strong advocate of inclusion and I never, ever want my son to feel excluded from anything.

It doesn’t matter what it is, if he really wants to do it then you better believe I’ll make that happen one way or another!

So when we are out a walk or at any sort of activity, it really brings a smile to my face when people don’t shy away because he’s in a wheelchair because the reality is, it can happen a lot.

But there’s someone else that comes everywhere we go, my daughter.

At just 4 years old, she is only a year older than her brother but her mind works in such a way that I often believe she has much more understanding and compassion than most adults!

She understands her brother needs more help, she accepts that.

She understands that we have to go to a lot of appointments, she accepts that.

But one thing she doesn’t understand is why he gets so much more attention.

Not from me, who she knows has to help him but from strangers just coming to say hello.

It makes me feel a little sad when people are putting the extra effort in for my son and my daughter just gets pushed to the side.

So if you ever see us, please come and say hello to my son but also say hello to my daughter.

Inclusion is about equality and it’s important to remember that.

On Different Pages

“Your son will have developmental delays.”

I turned to my husband with a genuine smile, thinking my son, who had been in an induced coma for a week, and who I feared would come home in the same condition, was now being handed a hopeful future.

My husband, seeing my smile, twisted his face angrily and quickly left the NICU room, slamming the door behind him.

The same words were spoken to both my husband and I, in the same place and time, by the same doctor; how did we hear them so differently?

Miscommunication happens all the time.

We send a text, thinking our tone and wording was spot on, and somehow our intended meaning gets lost through the technology.

The same can happen when we leave out critical information we expect our audience already knows.

And for many conversations this doesn’t bear much weight; if we want to clear things up, we can and if not, no harm done. Simple misunderstanding.

But when the topic is our child’s medical diagnosis, good communication is absolutely necessary.

The most important gift we can give your special needs child is a strong co-parenting relationship.

If the parents are on different pages with accepting this life-changing information, we’ve got a bigger problem than the diagnosis itself.

Don’t lose hope; there are many ways to keep communication open and less tense. A less tense home is best for everyone in your family!

Here are some strategies if your child is newly diagnosed and one of you is having a hard time accepting it.

Be patient.

Being patient with your partner as they process a diagnosis shows them their emotions are important, valid, and worth waiting to hear.

Be patient as they adjust to new medical terms, too. Care plans, specialists’ roles and treatment always include medical jargon, which can be hard to understand.

Allow your partner time to process.

Receiving a diagnosis for your child is both a relief and the start of a roller coaster ride, the track, twists and turns of which you can’t predict.

It is altogether frightening, angering, depressing and exhausting. Giving your partner space and time to process lets them know you will be with them along the way.

Ask them, “Is this a good time to talk?”

You’ve just come back from a great appointment with a rehab doctor. You’re excited to share what he said with your partner.

But will they perceive the information in the same light as you did? There’s no better way to find out than to ask first if you can share.

And if they say no, accept that and agree to talk when both parties are feeling up to it.

Try to keep emotions in check.

Your son is about to undergo surgery and you’re freaking out. Your daughter just had her first seizure.

Your child is starting school, beginning with a new therapist, finally getting a piece of necessary medical equipment, traveling out of state with you.

Whatever the new event, you’re going to have strong feelings about it – good or bad – because it’s happening to your own child.

But emotions running high are going to affect you, your child, your partner, and your perception of what is happening.

Acknowledge your feelings and share them with a trusted friend, or write them down in a journal.

Then approach the situation with your partner, with your emotions less intense. This will allow everyone to stay calmer and more clear headed.

Being a special needs parent is a joyful and rewarding role unlike any other. It can also be very difficult at times.

When you and your partner are on the same page with support of each other, you can and will enjoy that role – and your child – together.

 

I Am

I am a nurse.

My shift never ends as I sit bedside, wheelchair side, and every side in between. I give medication and comfort, I feed and I clean.

I listen to your fears and distract your worried mind, pausing every now and then to wipe away the tears.

I am a therapist.

I sit through all the sessions and learn all the tricks and ways, taking home what I’ve learned to lace into our days.

Physical and speech, occupational and vision, feeding, behavior, and play…. hand in hand, we do it all each and every day.

I am a secretary.

The phone calls are endless and the paperwork nags and pulls. The calendar is always bursting and my voicemail’s almost full.

My email won’t stop dinging with messages galore and those who wreck my organization get booted out the door.

I am an advocate.

Wherever we go, the educating never ends. I call attention to what people say and the message that it sends.

I do my best to spread the word—to model better ways in love. For some people don’t yet how to place others above.

I ask doctors and professionals to see you for who you are.

I push society away from comfort and toward inclusion reaching far.

I am an athlete.

I lift and hoist you day in and out. Into the bathtub, out of the chair, into the van, and all about.

It is my joy to hold you near as I help your body function, my dear.

Caring for you keeps me feeling strong and reminds me that I am right where I belong.

I am a teacher.

I teach you academics, life skills and more. You take what I teach you and with it, you soar.

Although I am a teacher, the truth is, you are too. You teach me so much more than I ever could teach you.

I am a cab driver.

From doctors to therapy to hospitals and back, our life is often lived on a very fast track.

I load up the van, all your equipment and you, and together we embark on journeys driven by love so true.

I am a maid cleaning up the mess that never ends. I am a playmate, building, laughing, and loving shenanigans.

I am a researcher searching for the answer to your every need. I am a visionary committed to seeing all you were meant to be.

I am a comforter holding you through life’s greatest, deepest pain. I am a giver but what I give cannot compare to what I gain.

I am all these things and so much more woven all together.

I am proud to be a special needs mother.

Now David Can Help His Sister

David’s world is mostly centred around David. It’s the same for most kids when they are younger. Their primary concern is around themselves and what they need and want.

As David’s sister has grown, she’s learned that taking into account what David needs is important for the family. 

She’s learned that if we are going to have fun at the playground, it’s best if she helps him understand when it’s his turn on the slide.

She’s learned that if something is upsetting David she can come and get help or in most cases, she’s actually able to figure out what is upsetting her autistic brother and help him. 

 In some ways this is because without her adaptions we wouldn’t spend time at the park or her brother might lash out at her. 

But I also think she’s just growing up with an awareness of others needs and how this impacts on her world and the world of her family.

David though, is usually struggling with getting through each day. He doesn’t have time for the needs of others. 

Or so I thought. 

David doesn’t sleep well. Many people with autism (including both my sons) have sleeping difficulties.

However, David can stay in his room after lights out and will generally stay on his bed bouncing about and muttering in his own mysterious language.

David uses very few words to communicate but the other night he can came down the stairs looking anxious.

He waited on the bottom stair for me… and in a few seconds said ‘help me’.

I assumed something may have happened to his bed covers, or possibly he’d dropped a book down the back of his bed. 

So I held out my hand for him to guide me to the problem.

‘Fix?’ I asked.

‘Fix… Jay’

I was a bit confused. 

But half way up the stairs I heard a quiet sobbing and realised David was taking me upstairs because his sister, Jane, was crying in bed. 

It’s difficult to know why David came to get me. Was Jane’s crying annoying him?  Jane doesn’t usually cry a lot so perhaps it was just unexpected. 

I suspect he didn’t like it for some reason but whether that was because of how Jane was feeling or how he felt about the noise I don’t know.  

What I do know though now, given that this has repeated itself, it that whereas once Jane would come get me if David was upset, I can now rely on the opposite too.

Somehow despite their young age and challenges, they’ve found a way of looking out for each other.

And that’s pretty impressive. And makes me feel like things might be ok.

All in A Year

In one year so much has changed. This time last year, Rory and Alfie were both still babies; still cuddly and chubby with fat rolls to die for.

Now, they are little boys; boisterous, mischievous and always looking for an adventure.

But it is not only Rory and Alfie who have changed, our entire family has changed!

I completed my degree and started my training contract to be a solicitor, Zak and I became engaged and we started the search for our forever home.

Though we haven’t found it yet, it is an exciting journey to be on.

What is more exciting is watching our boys grow up.

Whilst watching Rory develop and grow, we never thought we’d see Alfie progress much further.

From his diagnosis, all of the experts were nothing but negative. All they could say is what Alfie will never do.

Yet one year on and he has defied their expectations already, he is becoming stronger physically and mentally.

He is learning to crawl and can walk with the help of his walking frame, his cheeky and sassy nature shines through more and more each day.

He is testing boundaries, the same as any other two-year-old and learning about his likes and dislikes.

In January 2018, Alfie got his cochlear implants and over the past 6-months, his use of them and understanding of language has developed massively.

He turns to the sounds he enjoys, is startled by the sounds he doesn’t expect and has even started to ignore people when he cannot be bothered to listen.

For parents of hearing children, your child ignoring you and rolling your eyes when they are bored of listening to you is normal, sometimes even expected.

It is a part of development and growing up. But for parents of a child with hearing loss, it is exciting and amazing when you realise your child is choosing to ignore you.

For many, this will make no sense- why would someone enjoy being ignored, especially by their child?

But with cochlear implants, sounds are not distinguished, it is not possible to focus on one sound as all sounds are picked up, whether Alfie wants to hear them or not.

So, for Alfie to hear us and choose not to respond is amazing. Sometimes you see him smile and look away, taking delight in being able to choose not to respond.

And for Alfie that is incredible.

To be able to choose what he wants to do and doesn’t want to do, what he likes, and dislikes was something that was always uncertain for Alfie.

Due to the nature of his disability, it wasn’t known if he would be mentally and intellectually able to make choices because we didn’t know if his cerebral palsy would affect that part of his brain.

So, to see him make conscious decisions and understand what is going on around him bring us indescribable joy and happiness.

He truly is unstoppable, and we will always be there to support him and Rory in everything they want to do.

His diagnosis does not and will not define him

May 15th is International MPS/ML Awareness Day

I know right, another ‘Awareness day’ – We can feel bombarded by Awareness days, there seems to be so many of them.

Awareness Days come and go almost in a flash unless they are important to you and affect you or someone you love.

Since my son has MPS type 2, Hunter Syndrome, you can guarantee I will always write about two awareness days –

The last day in February as it is Rare Diseases Day and May 15th as it is MPS/ML Awareness day.

My experience in writing such pieces has taught me that the facts and figures are uninteresting to the general public, it is the people that strike a cord with them.

It’s the stories that stay in their minds not the facts.

Let me tell you a story –

She was young, far too young to be having such concerns. She couldn’t even find the right words when doctors referred her son to other doctors.

When asked what brought her to each specialist, her mouth would run dry and self doubt would creep in.

She was convinced that she could not disagree with doctors who had initials after their names.

She didn’t know it then, but she was much more than a mammy, she was fast becoming an advocate of someone and something so much bigger than her 20 years experience of life.

After almost six years of trying to explain why she agreed with some of the diagnosis doctors and specialist threw her way, she couldn’t fully explain why it didn’t ‘feel’ right to her.

She was ridiculed and made to feel stupid, naïve and seen as a time waster by the very people who should have been listening to her.

He was almost 6.

He went from a whirlwind boy to a boy who tired easy. He struggled to remember why he loved certain toys. He forgot how to play.

He became louder and more boisterous as the years went on.

He had zero regard for his safety and didn’t seem to understand a simple sentence; a sentence which he understood as a toddler he struggled with as a 5 year old.

He didn’t look like her. He toe walked and his tummy was as round as an orange.

His tongue looked far too big for his mouth and his hearing (despite grommets and later hearing aids) deteriorated regardless of the intervention he received.

His speech reduced, for every new word he learned he forgot three.

It was an accident.

She had accidentally seen the right doctor at the right time.

She refused to let the ENT (Ears, Nose & Throat) specialist operate on her son. This would have been his 5th operation for the insertion of grommets.

She was pretty sure grommets were doing absolutely nothing for her son, only causing him breathing issues every single time he was intubated for these surgeries.

She refused to sign the consent form and that is when it happened. She demanded a ‘kiddie’ doctor see her son instead of an ENT doctor.

In his annoyance the specialist called the paediatrician down to talk with her, he had warned her that the paediatrician was a very busy man and wouldn’t take too kindly to this sort of ‘messing’.

He was wrong.

The paediatrician listened to her.

He brought her and her son into his office. He nodded as she spoke, she apologised for the ‘fuss’ she had made. He reassured her,by the end of their conversation he admitted he felt she could be right – her son had far more going on than a hearing issue with a global developmental delay.

Three weeks later that same paediatrician told her that her son had a rare genetic terminal syndrome, for which there was no cure. He had Mucopolysaccharidosis type 2, also known as MPS 2 or Hunter Syndrome.

There was a leaflet.

That’s all.

That’s all he could give her- a single leaflet.

There was no group.

There was no ‘safe’ place to be gently eased into her new world.

No internet support and there sure as heck was no Awareness Day.

That was back in 2008.

That was also the day she heard for the first time how loud silence can be.

She had asked the doctor about other families who had children like her son ,he couldn’t answer, because he didn’t know of any in her county let alone her country.

There was no Awareness days and if there were the Doctors had no clue about them, Rare Disease Day in Ireland had just begun that year and I have no idea when MPS international Awareness Day begun.

I write about these Awareness Days for the young mother I once was –

I want her to realise quicker than I did that specialists and doctors all sit down to poop too.

When you have any concerns about your child it is paediatrician that you call and set up an appointment with.

Forget going back and forth to your GP, if something isn’t right, listen to your inner voice and ask to see a paediatrician.

I write for the doctors and those in the health care profession, so that they learn to really listen, not just presume.

They must realise that Rare Diseases even if they are Rare, do happen.

If they listen to the parent they will be able to do their job a damn side quicker and get the answers that need to be found in order to treat the condition as best they can.

I write for the public, a rare disease can affect anyone. Anyone. We were told only boys have Hunter Syndrome, yet the first person we met was a beautiful little girl with the syndrome.

It is now 2019-

When a child is diagnosed in Ireland with MPS – there are a list of people (who live with MPS or are a parent to a child with MPS) ready to help the family and ease them into their new reality, when they are ready to.

There is support waiting and diagnosing doctors all have that information at their fingertips.

Doctors are more aware of rare conditions such as MPS due to the Awareness campaigns here in Ireland through Rare Disease Day and MPS Awareness Day.

So yes, while we may feel bombarded with Awareness Days.

They are each very important to the people who live with them-

You may not think you’ll ever have to know much about MPS or any rare disease but Hunter Syndrome knows no religion, region or sex it can affect anyone;

There was no history of Hunter Syndrome in my family before Ethan was diagnosed.

For more Information about MPS/ML Awareness day and what you can do to show your support please follow the link – Thank you

 

Www.mpssociety.org.uk

 

How Raising 2 children with Special Needs Changed My Life

I knew becoming a parent would change my life.

Like most people, I probably didn’t appreciate quite how much, but I had some kind of idea.

Being a dad would bring new responsibilities, less free time, and a new purpose.

Being a dad was something I couldn’t wait to be, and I had a vision of what life would be like for our new family.

Yet, when your children have special needs, your life changes more than you could ever have imagined.

Some of these changes can be hard to take. They seem unfair, they weren’t supposed to happen to you or your child.

But then there’s also the unexpected changes, the development you go through as a person, the progress you make along the way.

My eldest son Jude was diagnosed with autism when he was just 18 months old.

Back then I knew nothing about autism, and had no real knowledge about any special needs, or had any contact with people who did.

My life was about to take a massive turn, and I had little idea just how much. Three years later my other son Tommy would also be diagnosed, again around 18 months old.

Over the last 9 years there’s been many changes. Some have been difficult, real challenges to face up to each day. But at the same time some have been for the better.

Firstly, I’ve become a carer as well as a father. The needs of both of my boys are very complex, and they need constant 1-1 support.

They need help with personal care, and it is likely they will need support for the rest of their lives.

It’s quite a difference to the typical parent role I imagined when Jude was first born.

Struggling to be around each other has actually led to me becoming a ‘full-time’ dad. Me and their mum look after one boy each and swap every couple of days.

It gives them the 1-1 care that they need, and the best possible environment for them to live in.

With the challenges autism brings to their lives it can mean we end up quite isolated. Social occasions can be difficult.

Typical family activities such as going to the park, the cinema, days out, are often a step too far. So the amount of time I get to see friends and family has reduced massively.

It’s meant I’ve also had to completely change career.

Instead of working in London full-time I now work part-time from home, fitting everything I can around school hours, meetings and appointments about the boys, and school holidays.

This can also leave me feeling a bit lonely at times. Interaction with other adults (outside of the various meetings) is few and far between.

But, and this is a huge but, despite those challenges, the positive changes my boys have made to ME, far outweigh any negatives

They’ve opened my eyes to the world.

I knew very little about anyone with special needs and disabilities, never gave it a second thought, now they are never far from my mind.

Being more considerate of others, wanting to make sure there is equality, opportunities for all, have become big passions of mine.

They’ve helped me develop incredible levels of patience. I always considered myself a pretty patient person, but I now have infinite levels compared to 10 years ago.

Which is an important skill to have when negotiating your way through this world, especially when it comes to dealing with and fighting for the services our children need.

They’ve helped me be more empathetic, non-judgmental, always thoughtful of how another person might be feeling.

To see the joy in the simplest of things, to celebrate every achievement, no matter how small.

Each day they show me how to be brave, how to get up and carry on, no matter how low I feel or how tough things might be.

If they can go out into the world, not knowing whether anyone will understand them when they try to communicate.

Unsure of how they are going to cope with the sensory overload that’s thrown at them everywhere they go, then I can do anything.

I can fight for them, advocate for them, and never give up in helping them grow and develop

They’ve shown me how to live in the present. As parents our minds often race ahead of us, scared of what the future might hold for us and our children.

My boys have no concerns other than what is happening right now, in this moment. Worrying about the future doesn’t help me in any way, being happy today does.

My role as a parent, and writing about our lives, has also introduced me to a new, amazingly supportive community.

Whilst we might not get to meet face to face very often, the online world means there’s always someone there with advice, or an ear to listen, who understands, and get’s what life is like.

It’s introduced me to some very close new friends.

Being a special needs parent has completely changed me as a person. It’s altered who it is that I want to be, the reason I get up every day, my purpose for being.

The unconditional love that you experience each day makes that impact, and leaves me striving to be a better person.

My life is different than I ever imagined, but better in oh so many ways.

What is in A Year?

There’s a saying about parenthood which I have come across more than once – Yes, the days are long but the years are short –

It is true.

It is especially true when you are raising a child with a progressive illness.

The years have gone by quicker than I had ever imagined they would.

There have been days over this past year that have really felt never ending –

The days Ethan was unwell, or the days I worried all day long about Ethan’s obvious new decline or the days that turned into nights of no sleep, little food and no comfort.

Yes, some days over this past year have been so very long. In fact, a lot of our days have been so very long over the years in general.

It’s funny how the ‘good’ days whizz by – Ethans huge big 16th birthday bash which all fell into place thanks to the general public and those who read my blog.

The kindness we witnessed over his birthday and the build up to his birthday will be something our little family treasures forever.

We are fast approaching Ethans 17th birthday.

Every birthday brings a mix of emotions for all parents, yet for parents like us it brings up stronger more pronounced feelings –

We often feel fearful – what is my son’s future going to look like?

Or anxious – we are now facing the world of adulthood with a child who may look like an adult but isn’t – they are no longer ‘cute’ and excused.

They grow beards and that ‘cute’ shouting sounds much deeper and causes more people to stop and stare…the worries truly are endless.

I personally become filled with memories of yesterdays and am always shocked at how quickly time has gone by.

It feels like only a few years ago Ethan was causing havoc wherever he went.

He would assure me he wouldn’t do ‘X’ ‘Y’ or ‘Z’ – but as soon as he got the chance to run wild he took it with both hands and legs.

Sometimes I think deep down he may have known that he would not always be able to run – And sometimes that thought haunts me.

Ethan had an obsession with my glasses so much so that I got laser eye surgery because it was cheaper than having to replace my glasses so often.

He would grab at my glasses and break them then apologise only to do it again.

He would also hide my glasses – my mother’s favourite story about Ethan is the time he gently took my glasses off me after I refused him another biscuit.

He asked if I could see him to which I replied “no” (but I could, my eyesight wasn’t that bad).

He moved my glasses out of my reach and crawled to the biscuit tin asking me the whole time if I could see him –

I continuously told him I couldn’t – then he quietly opened the tin box and scoffed as many biscuits as he could, while I pretended to search for my glasses.

He turned to my mother and motioned for her to keep quiet.

Of course she did but she tried her best to hide her laughter while I kept asking what the noise was.

Yes, the years are short.

Ethan has always had a way with people.

Sometimes when I talk about the things he used to do, people who know him now can’t comprehend that the same boy sitting in the wheelchair in front of them once told a woman who was staring at him to ‘F*uck off”!

And that the very same boy thought people who used wheelchairs were ‘Robots.

Despite our best efforts, Ethan was convinced that a woman he met at an MPS gathering was indeed a robot because she controlled her own chair.

He decided to call her a Robot and run from her – which to be fair to her she played along with and didn’t seem offended.

Yes, the years are indeed short.

Ethans pending birthday is stirring up emotions in me that I hide so well.

It’s funny how having a child with a terminal condition can teach you so much but also ensure you learn to box away the sadness or the fear.

I guess, it’s the only way to raise a dying child, you do need to ‘box’ it away.

And some days, months even years that’s easier.

It was easier in the early days to ‘box’ it away because I truly believed Ethan would be given a drug that would eventually cure him or at least stop the syndrome in its tracks.

As the days turned to months and the months to years…

Slowly I realised that anything like a ‘cure’ or even a drug to ‘stop’ the syndrome would never be given to my son and that, that is something that no one wants to hear or admit to.

But Ethan is turning 17 and we have to face it. Face it in all it’s glory and fear.

We have the same fears as any other parent of a child with special needs moving into adult services but there’s the unsaid, the upsetting reality that even I am afraid to admit –

A life limiting condition comes with a life expectancy.

We were told Ethan would not see adulthood – yet here we are, on the brink of it.

We are afraid, hopeful, scared and happy.

What kind of adulthood will Ethan have?

I have no idea. I imagine it to be filled with adventures, love and family.

What I do know is that, yes, the days may be long and the years short –

I am happy about that!

let my days be long, let them drag and even when they are bad or sad I am going to find comfort in their length because I do know that the years are indeed far, far too short.

Buckle up Ethan, we are rocketing into adulthood!

I Choose You

I would venture to guess that almost all parents of children who have special needs have acquired a list of the ridiculous things people say to them.

A couple of the most popular phrases familiar faces and strangers alike pass out to special needs parents sound something like:

“I just don’t know how you do it” and “I could never do what you do.”

Whether they say it aloud or not, the parents who these comments are directed at generally think something along the lines of “I don’t really have a choice.”

When you are given the gift of a child who has additional needs or diagnoses, quitting is not really an option.

Do typical parents abandon their children when the going gets rough? Hopefully not. Neither do we.

I am a mother to multiple children who have special needs.

But the difference between myself and the majority of other special needs parents is that I did, in fact, have a choice.

My children who have special needs were not born of my womb. I chose to care for them through foster care and adoption.

While I wouldn’t say I had a full idea of what I was getting into with each child (not even close), my husband and I do know that every call we receive about a child in need will be a child who as a disability or medical condition.

From the beginning of our foster and adoptive journey, we specified that we wish to be a home for children with special needs.

So while the journey is always filled with the most unexpected unknowns, these are twists and turns that we have asked to be a part of.

In many ways, the fact that I chose to be a special needs mama does not make me that much different from those who parent special needs children who were born to them.

But there are some differences that stand out.

I remember when a child with complex medical needs came to live with us and someone said, “Well I know you’ve probably thought about adopting her but you have to think of future holidays and vacations.”

I remember thinking: “Would you say that to someone who is holding their freshly born baby who has special needs?” Of course not.

The truth is, our journey of parenting is viewed and treated differently because we have chosen these children.

In the past when we have felt overwhelmed or asked for help, there have been times that we’ve been met with an attitude of “You chose this” and “Maybe you shouldn’t take on more than you can handle.”

To be absolutely transparent, sometimes I do struggle with feeling unsure about whether my husband and I have made the right choice.

It does feel intimidating to commit to care for children who have a long list of unique needs, whether I will be their mama for a short time or forever.

I see the ways it changes relationships. I see how tired and isolated I can be. I do battle fear over what I have signed up for or what I have given up in return for caring for these children.

But when it comes down to the heart of the matter, I would choose this life again and again. I would choose to love, adore, and care for these children who cannot care for themselves.

I would choose the sleepless nights and endless appointments. I would choose to hold their struggling bodies in their deepest, rawest hurts and join them in their greatest victories.

I would choose the medical mysteries we wade through and I would choose to keep advocating like a grizzly bear time and time again.

I would choose these children because these children are more than worth every ounce of what I give to them.

I would choose these children because they are not given the same choice that I am.

And you know what? I believe that the parents who didn’t get to choose to have a child with special needs would choose their child again and again too. They already do.

We as parents all wish our children didn’t have to be in pain or be left out or work so hard for everyday tasks. We do become exhausted.

Almost every day does hold grief, heartache, and ridiculous amounts of hard layered in among the beauty.

But when given the choice, the answer is easy. We choose these precious souls that have been entrusted to us no matter their needs or how the arrived in our hearts and homes.

May these children know and believe the words “I choose you” every day of their lives.