Bringing the world to my son is something I’ve tried to do since he was a baby, I’ve focused so much on it that it slowly left my mind that one day Zachariah may bring the world to himself.

Over the past few weeks, due to illness and epilepsy we’ve struggled with physio, and although this has been a huge concern, in the shadow of this, Zachariah has spent more time in his chair and has been developing lots of other fine skills that need to be celebrated and pushed.

His hands have been very busy getting messy, creative and holding onto various toys.

This is not something that has happened over night, there was a time when we struggled to undo his fists, but reality is he’s really starting to be intrigued in the world around him and learning just how to use his hands to get what he wants.

I’m currently lay on the floor next to him as he punches my nose and wipes my cheeks with his very wet, stinky hands and I couldn’t be more proud.

He’s aware I’m there from the gentle conversation we’re engaging in, therefore starting to try and find me with his hands.

There was a place, and I remember it well where we would have put numerous toys onto his tray, lap and beside him on the floor and he would continue to stay still without an interest at all.

Whether he noticed it or not, I’m not sure, but there would be no investigation on Zachariah’s part, we would need to intervene and do hand over hand technique to stimulate him into the play and exploration.

Coming from that place feels like such a huge step, as now, as soon as I place anything near him, he opens his hands, finds it, investigates it and either plays with it or slings it on the floor!

It’s incredible just how much he’s developed into a curious George!

Much to my delight, Zachariah is getting better, so the physio is being reintroduced, and Zachariah is full steam ahead!

So much so he’s sat up for the first time ever using arm gators, and managed to do 40 minutes in his frame.

Now I need to make sure we keep a good balance between all of his skills and not lose sight of the things he showing interest in.

My boy is flipping incredible, may he start to lead the way a little bit more with his development.

I guess what I’m trying to express here and why I’m sharing this with you is to remind you that there may be new goals being completed where you don’t expect them.

I’ve been so tied up with  getting physio done that I had almost missed the exciting things happening in front of me.

I have reintroduced a baby play gym to help develop these skills and hope that Zachariah will continue to be curious and bring the world around him using his very own hands.

Keep on teaching me Zachariah! X

They have clubs and tea dates to arrange and a myriad of other things to contend with during term time.

There is barely time for their feet to touch the floor, let alone get to bed before 11pm most nights.

When raising a child with an additional need or complex disability this often involves a very different type of stress.

It can mean seemingly endless appointments, preparing and evidencing paperwork for school placement, battling for equipment, sleep deprivation and a whole new ‘normal’ to contend with.

Often the cost of coming to terms with your new normal takes time and impacts on friendships, relationships and home-life.

A whole life adjustment has to take place and can create problems whilst this adjustment happens.

For some it is like a grieving process, for others they experience a depression or anxiety

Some parents don’t ever manage to accept their child is disabled and relationships do break down.

Some parents blame themselves and find it very difficult to lift themselves out of the feelings they are experiencing.

Some cope relatively well and muddle through.

There is not a, ‘normal’, way to adjust to how life will be from now on.

The most important thing to remember is that you are still the same family today as you were yesterday!

The poem by Emily Perl Kingsly, ‘Welcome to Holland’, describes receiving the diagnosis of a child with a disability being akin to the expectation of travelling to Italy but landing in Holland.

The thought process and adaptation of landing in Holland can be a shock initially but actually it’s not such a bad place after all, just different and requires a huge learning curve.

Feeling alone is tough especially at a time when support is crucial.

Remember to seek out support, join support groups whether face to face or online.

It is often said that people feel abandoned when their child is diagnosed or recognised as having a disability and this is often true – often the professionals have little knowledge of what is ‘out there’ to provide support and other parents become a rich source of information.

Use them and their knowledge and give yourself a helping hand!

So as you can imagine it was a shock to hear that he needed a hearing test before he could be referred to the speech and language team.

Even though I had stated that I had no concern with his hearing, I was told there was no harm in having it done and it was part of the process.

Tuesday 4th April comes round, nice early start, arriving at the hospital for 9.30am. I book him in at the reception and start the waiting game.

A lady calls him in and off we go, all confident and smug!

We enter a room within a room within room, which is all dark and a little terrifying actually.

The consultant quickly rushes in to the audiologist and mutters “move the chair, move the chair..He’s in a wheelchair!”

Great start, I feel even less confident about this as they have clearly not read his notes, therefore are not going to know anything about my son.

The consultant asked me for Zachariah’s difficulties and whether or not we had a concern about his hearing, I reply with his long list of diagnosis and confidently tell them that there is nothing wrong with his hearing.

She grabs hold of the severely visually impaired diagnosis and quickly finds a toy with flashing lights.

I look at Tim and just know that he is thinking exactly the same as me..’why is she getting out eye stimulant toys when we are here about his hearing?..It’s only going to distract him.

Anyway, the test begins!

The audiologist makes noises with different instruments behind him and the consultant sits in front to wait for reaction.

As soon as I realised this was how they were doing the test I interfered by explaining to them that with Zachariahs development delay he can be very slow to react, therefore to be patient with him.

As the audiologist continues to make sounds, the consultant starts to pull faces of uncertainty.

I’ve got to see.. So I interfere again by standing behind the consultant to give me a clear visual on Zachariah.

The next sound is made and instantly Zachariah stills and has his usual curious look upon his face… He heard it and he reacted!

The consultant shakes her head in an, “iffy”, way as if to say she’s not sure.

Once again interfering, mummy gets a little mad and stresses that he’s hearing all these noises and although he’s not smiling he’s reacting through stillness.

After what felt like a very long time, we are advised to get Zachariah to sleep in the waiting room and come back when he’s asleep to do a different type of test which does not rely on reaction.

I had to do this on my lap as they wouldn’t be able to get the device in his ear whilst in his buggy with the head supports. My arms begin to burn, my legs begin to twitch..

My son is not the small baby he once was and was becoming very difficult to hold.

The audiologist takes us into another room and begins the test. To try and cut this story short, the test failed!

A 6 minute test that takes 30 minutes fails due to too much noise and a fidgety boy, the device is unable to get a correct reading, therefore they have to fail him and refer him.

This is beyond frustrating as we know Zachariah has great hearing and with everything else going on we could do with one less thing to be worrying about.

I am writing this blog to share a day in the world of Zachariah and show the frustrations some of these days bring.

And I am not writing to call the NHS or the staff, as they are just doing their job! xx

Sometimes people are curious as to why Isaiah is in his wheelchair, amazed that he is completely independent in it, or sometimes to ask, “what’s wrong with him?”.

When they first hear about Osteogenesis Imperfecta, and what it’s most known for (bones that fracture easily), most people are typically pretty astounded.

There’s usually some cringing.  Replies vary between “I am so sorry”, “Will he grow out of it?” (OI is a life-long condition.), “that is awful”, “God bless you!”…

There’s usually some shock typically followed by “but he’s so…….HAPPY!?!”

Isaiah is truly one of the happiest children you would ever meet.

With everything he has endured…respiratory failure, four surgeries so far, and multiple fractures, he has chosen joy.

OI is a part of his life, but it’s not his life.

There’s so much more to a person with Osteogenesis Imperfecta than their Osteogenesis Imperfecta.

Isaiah is an amazing big brother.  He holds Jacob’s hand every chance he gets.

He watches his 8 month old brother with such pride and cheers him on when he reaches a new milestone.

They share laughs and conversations only they understand.  He loves reading Jacob books.  He is even learning to share his toys…at his discretion…

Isaiah asks to go out every day.  He enjoys evenings on the swing at his local playground, on our deck blowing bubbles, or rolling around the neighbourhood in his little blue car.

He loves rolling around local stores.  He is very into playing with cars.  He is a big lover of music- whether he’s playing, singing, or listening.

He’s been to Disney World twice already and although it’s been almost a year since our last trip, he asks almost daily to ride certain rides or go to certain parks.

There are rough patches, painful days, scary moments….but who doesn’t experience rough patches, painful days, and scary moments in their lives?

It’s how you respond to those experiences that matter.

We are trying our best to raise Isaiah to choose joy as much as possible.

When he fractures, it hurts just as much as someone without OI.  In most situations, we splint him ourselves at home, he gets some pain medicine as needed, and sometimes he spends a few hours watching his favorite movie or checking out some fun stuff on the tablet, but then he goes on with his life.

If he’s due to go to preschool? He goes.  If he wants to go to the park and swing?  If his legs aren’t splinted together, we get him on that swing.

Typically, he’s back to smiling and laughing once he is splinted because it offers him comfort and stability.

Life with OI is surely different…but it is also beautiful.

It has caused us as parents to slow down and soak up every joyous moment.  It has shown us how to feel grateful for life’s blessings.

It has given our son challenges but also the will to defy those very challenges.

And we’re thankful we get front row seats while Isaiah shows the world that Osteogenesis Imperfecta is no show stopper.

The severity of his Osteogenesis Imperfecta had kept him from being able to do anything more than roll over…if he wanted to go from the dining room table to the living room, for example, we carried him.

When we talked with a few professionals about how to get Isaiah moving, they really didn’t feel he was capable of pushing anything manually himself.

They suggested either an adaptive stroller so he could be supported well or a power chair.

Neither option was appealing to me.  He wouldn’t gain any independence with the stroller…and a power chair? I just couldn’t see it for him yet.

One of my goals for him was to gain strength….how would he do that in a power chair?

I really pictured Isaiah in a manual wheelchair…but when I suggested that, I was reminded of the severity of Isaiah’s OI.

The doctors believed he’d fracture his arms simply trying to push his chair.

My thought process was that he might fracture pushing himself…but what if he didn’t?

We had to try.

Amazingly, at just the perfect time, we had a very generous little boy ask Isaiah to be his “birthday buddy”.

Instead of that little boy, Jack, receiving presents for his big day, his family and friends donated money towards helping Isaiah to start rolling!

I researched different ideas; I didn’t think it’d be too easy since Isaiah is on the smaller side (back then he was wearing six months clothing) but luckily we found out about the 3-in-1 Scooot.

Not only was it basically a little wheelchair, but it also had a feature where he could use it to crawl!

Thanks to Jack and his family and friends, Isaiah quickly received his own Scooot.

It was super easy for me to put together myself (which is fantastic nowadays because I am constantly pulling it apart to clean it of all the crumbs Isaiah drops while eating on the go).

Back then, he needed some extra support, so his physical therapist and I got creative and placed some books behind him.

Before I knew it, he was rolling up and down our hallway.

Once he gained some momentum pushing himself, we shared videos of Isaiah rolling in his Scooot to his doctors, and they quickly helped us get him a custom manual wheelchair for out and about, preschool, and visiting friends and family.

The Scooot gave Isaiah his first taste of independence.

It is his “around the house” mode of mobility nowadays….and he no longer needs any extra head support thanks to all that Hulk muscle he’s developed pushing himself.

It is such an amazing gift to be able to call him to lunch and see him come rolling down the hallway from his bedroom after some time playing independently in there.

His eyes just light up as he pushes himself from point A to point B.

I love when I go in to greet him in bed in the morning and the first words out of his mouth are “Go in Scooot? My orange Scooot?”

The Scooot has given him some control in his life, when he’s living with an uncontrollable condition.

There wasn’t much else to our “baby blob” at that point, as he was just six weeks gestation.

We were elated; what a Christmas gift, our first child was growing.

Fast forward to Easter, just 14 weeks later, and it was already time for the anatomy scan…and all I was focused on was finding out if it was a boy or a girl.

This was four years ago now, but I can recall the whole experience like it was yesterday…the ultrasound tech clicking away, measuring body parts, stating “normalcy” about certain parts and silent as she went over other parts of our baby’s body…then she went to talk to the doctor.

We had never been through this before so we thought it was all…normal.

We waited for a long time and were then moved to another room.

I was still so excited to find out if we were having a boy or girl that I was oblivious to all the red flags…the doctor came in and sat down.

She cleared her throat and sat in a brief silence, then asked us if dwarfism ran in our family. After a moment, it sunk in why she was asking.

The doctor ran through her findings but my brain fogged in and out…”5th percentile of growth…. limbs are severely bowed….it could be lethal…”

“Lethal.”

We were referred to an office that specialized in high risk pregnancies…they told us they weren’t booking anytime soon when I tried to schedule an appointment but then they called back because they heard from my obstetrician.  They fit us in 2 days later.

At that appointment was the first time we heard the two words, the ten syllables that would change our lives. Osteogenesis Imperfecta.

“It’s commonly known as, ‘brittle bone disease’.”  Our baby, our son’s, bones were breaking in utero.

The doctor showed us a fracture in one of Isaiah’s femurs (thigh bone) and humerus (upper arm) bones.

He showed us how his tibias (lower leg bones) were curved into acute angles and how when he used pressure on the area where Isaiah’s head was, his head would change shape very easily.

Thankfully we had an amazing support system in our friends and family and in the Osteogenesis Imperfecta community online.

It was in support groups that I saw pictures and videos of kids who received the same/similar grim diagnoses as our son and they were defying what OI is known for…so many were walking, running, dancing, playing sports!

So many were smiling, happy, amazing souls.

The rest of our pregnancy was a roller coaster.  Sometimes we’d receive difficult news and other times we were offered glimmers of hope.

Isaiah was born via c-section due to his breech position.  He was born with over a dozen fresh fractures.

Due to that and other signs (blue sclera instead of white, triangular face), he was officially clinically diagnosed with Osteogenesis Imperfecta type 3, the most severe form you can live with, and then the diagnosis was genetically confirmed a few weeks later thanks to cord blood testing.

Isaiah’s first few months were challenging.

Osteogenesis Imperfecta is more than bones that break easily.  It’s a collagen disorder and collagen is in every part of the body.

Isaiah went into respiratory failure at one month old.  He needed a feeding tube until five months.

He needed oxygen and a constant cpap until seven months.

He fractured from simple things like sneezing and rolling over…but he was rolling over!

He was gaining strength thanks to a strong will and a treatment called Pamidronate.

And at 1.5 years, thanks to a little seat called the Scooot, he moved independently for the first time in his life…