Since we’ve had Lydia in our lives I’ve noticed quite a dramatic shift – I mean apart from all the obvious shifts that come with having a little one with disabilities.

That shift has been in friendship, and I’ve noticed it to be the same for most other parents in our situation.

The reality is that we ourselves have become friends with deficits, that is that we are now people who have financial deficits (we’re broke) time deficits (we’re often busy) energy deficits (we’re tired) and maybe personality deficits (being a special needs parent has probably made me a more boring person). This is a perfect opportunity to test the adage – a friend in need is a friend indeed

After managing to put back together some of the pieces of our lives that were shattered by diagnoses and long hospital stays, most of those parts which carried our friends were either missing in part or all together. Below are the 4 types of friend that I believe you may have after having your life turned upside down by disability.

Fly-away friends

Check down the back of the sofa all you like – I’m afraid they’re gone.

Not out of existence, just out of your world.

You may still see them around but if you bump into them at Tesco and talk to them they’ll give you that look that says, “I really wish you hadn’t seen me”, that is if they didn’t manage to dodge into another aisle and leave before you caught them and assumed you were still friends.

I’ve had this with people that I’ve known since I was 4 years old, maybe they just don’t know how to relate anymore – the truth is they’re not cut out for going through storms with you so best to let them float away I’m afraid.

Far-flung friends

These guys are still in your world but on the other side of it – It’s the same effect as if they had moved to Australia.

They still speak to you but don’t initiate contact much, if at all.

You’re no longer invited to do things with them (because you probably couldn’t make it anyway) and a house visit might possibly occur on a special occasion. The far-flung friend is still your friend but much more distant and you can’t really rely on them for much.

Faithful friends

These creatures can be found living among unicorns and fairies – OK they’re not quite as rare as that but they are few and far between none the less.

These friend’s may have stepped into this category when things got hard and those you expected would be there through thick and thin fell into the last 2 categories.

Faithful friends recognise you have things to contend with and support you in the way that they can and step out of the way when you need them to, without becoming any less faithful.

These are the people who don’t just send you messages saying “I’m here for you if you need anything” – which is all very nice and 99.99% of the time useless and not genuine, but they say, we need a coffee, I’m on the way or how is Tuesday? Or what do you need I’ll bring it. The beauty is that they recognise that you will be that faithful friend when they need you to be too.

BIG SHOUT OUT TO THE FAITHFUL FRIENDS OUT THERE

Fellow fighters

New friends in the same battles as you are – (I hope I still get published even though I didn’t use ‘Firefly friends’). Hopefully you’ve made some of these, as a Dad I must say that I can see that this seems to be easier for Mum’s to do.

Both me and my wife have taken the same sort of hit to our friendship circle, but she has been able to rebuild a circle of “Mum friends” a lot better than I’ve been able to link to Dad’s who “get it”.

Dad’s we need to link together a lot more and Mum’s you seem to be doing a great job at supporting each other.

Friends, I just want to say how important you are. You don’t realise it, but we need you, Far-flung friends boring isn’t contagious, underneath it all we’re still here honest, don’t disappear when we need you. Faithful friends, thank you for perfecting that word friend in your caring support, you’ve kept us going.

Firefly friends, you are the fellow fighters, be a friend to somebody in your similar situation and they’ll be a friend to you. Talk about the difficulties of disability but move beyond that too and as time rolls on you will hopefully move into the category of faithful friends for many years to come.

Sometimes you will be on your own, some things you will have to do on your own, but you can’t do everything on your own and thankfully you don’t have to.

Friends you are vital.

When I was driving our 8-year-old to school he said “Mom, you have a lot of friends.” This took me by surprise since I rarely go out with friends or chat on the phone when my kids are around. He never sees me get ready for “girls’ night out” or pack my bags for a moms only get away.

We don’t even entertain at our house unless it’s a party for one of our kids. My life right now is focused on raising three amazing boys and juggling all that comes with that; extracurricular activities are few and far between.

I wasn’t exactly sure where he was getting the idea that I had a lot of friends. Then he said, “you know, all the people with CDG. The ones you see in California, the ones in Australia….”

Ah hah. Those friends.

When we received our son’s diagnosis of Congenital Disorder of Glycosylation one of the first things I did was join an online Facebook group, a group dedicated for families around the globe affected by CDG as well as medical professionals and researchers invested in the disorder.

Upon joining I was welcomed with open arms with comments of encouragement and posts of members sharing their children with me. I had figured that this page was a page to ask questions and gain knowledge about this rare condition.

I assumed it was a page where I could find files and resources to help navigate this unfamiliar journey. I thought that it was a place to ask “what do you do, what have you done, and what do you think?” regarding issues our son was having.

What a surprise to find out that this page was not what I was expecting.

Yes, it is a page that offers all of what I mentioned above. It’s most definitely a page for parents to help each other and brainstorm when their own specialists are perplexed with their child. A page to gather the most recent research and share what medications and therapies have helped along the way.

What I didn’t know is the page would be all of that and so much more. A page where my tribe is. A page where strangers have become family. A page where we all weep when we lose someone to this life-threatening disorder. A page where we all jump for joy when a milestone is met and we truly know that magic has happened.

A page where I have become so close with many of the parents that “friends” isn’t the correct term; soul sisters is more like it.

We know life is crazy and no matter what happens in life we always have each other’s back. We know that we don’t have to see each other, talk, or text constantly to be important in each other’s lives. We send group chat messages and texts to share heart-warming or you’re-never-gonna-believe-this-happened moments, and sometimes an occasional hilarious meme.

But life is crazy. Our lives are crazy. We can go weeks, sometimes months without one on one contact. But these are the women who truly “get it” and I have the utmost respect and deep love for them. My tribe. My soul sisters. Having them in my life has been one of the greatest things to happen since diagnosis day.

When I joined the small FB community I had no idea what I was getting myself into.

I had no idea I would become so invested in an online family and over the years these families would feel like my own. I never knew I would find women who feel like home. A genuine feeling of belonging. Who knew you could have such a strong bond with people you don’t physically spend hours with. I never expected this.

From day one I have always thought that our CDG community was something special.

And 5 years later; I know it is.

A little over four years ago, we brought home a cute little bundle of fluff. We named him Ben. He was a puppy with a lot of expectations on him.

You see, Ben was carefully selected to become a seizure alert and therapy dog for our severely disabled daughter, Miss Z.

We did not go into the decision lightly. Instead, we spent over a year researching and discussing the possibilities with a variety of breeders, service dog organisations and dog trainers as well as several people who used service dogs. We debated if we wanted him to be qualified to accompany Z everywhere or if he would provide his “therapy” services more informally at home. Ben was the product of a lot of research and planning.

The first day, everything went swimmingly and Ben and Z even snuggled up together for a nap. We were thrilled.

However, the next morning, Miss Z became unwell, we had to call an ambulance and she ended up staying in hospital for nearly two weeks. During that time, Ben formed an attachment to Miss Z’s older sister. When she came home, Z was poorly and fragile – which didn’t mix well with a lively, bouncy puppy.

We threw ourselves into Ben’s training and socialisation. We took him out with us as much as possible to get him accustomed to a variety of places and situations. We did rigorous training with him.

However, Miss Z and Ben never formed a bond.

One day, when Miss Z was having a seizure, Ben appeared at my side with a toy – trying to convince me to go play with him. It was then that I knew he would never be a seizure alert dog.

Four years on, Ben is a different sort of therapy dog. Not for Miss Z (she prefers the cat) but for the rest of the family. He provides much needed affection and levity on those days when life is hard and he gets me out for a head-clearing walk every morning, even on the days when I’d rather hide away.

Online and in support groups, there always seems to be a number of people who are considering getting a puppy to train to support their child with a disability.

Our experience with Ben has taught us three important lessons for people considering doing this:

One – not all dogs are cut out to be therapy or service dogs. Some dogs are naturally empathetic and caring while other dogs can be taught to respond, but just don’t have the instinct. Ben is a loving, affectionate, intelligent dog who doesn’t have a mean bone in his body. However, he just doesn’t have that nurturing, empathetic instinct that would have bonded him to Z.

Two – you can’t think of the dog as a pet.

Service dogs are working dogs, not pets. If we had trained Ben to become a service dog, we would have had to stop treating him like a cuddly pet dog all the time and limited his play time with Z’s sister. In addition, we would have had to send him away for a significant period of time for training, as it is quite specialised and time consuming.

Three – be a responsible dog owner. When we finally decided to get a puppy, my husband and I treated it a bit like a marriage. We were getting the dog for better or for worse and until death do us part. Ben was going to be part of the family for the rest of his life, whether or not he became a service or therapy dog. It is a serious commitment.

I often wonder how many people get puppies with high expectations, and when it becomes clear that the dog isn’t suitable or it will take too much time, get rid of it.

Many dogs provide wonderful support, companionship and assistance to children with disabilities. However, it is important to go into the process informed and prepared.

What is a hospice?

Is it a place where sadness hides in every corner?

Is it a place that no one dares to speak of? Is it a place that means our children’s lives are coming to an end?

Is it a place that’s clinical, like a hospital, so to speak?

Is it a place where laughter is foreign and happiness cannot be found?

Is it a place where whispers are heard through a string of tears?

Is it a place that forces a happy face to hide the real heartbreak?

Is it a place with busy nurses and doctors, oh and tons of specialists too?

Is it a place with ambulance bays where medics rush in and out of the place?

It may seem like a hospice is a place where sadness lives among pain, with no room for joy, laughter or fun.

While there can be a sadness there (who would want to have to avail of a hospice service for anyone they love, especially their child), there’s so much more …

A hospice, I assure you, is much more than the place you may perceive it to be.

It is a place filled with warmth.

There is hug waiting for you, should you need a soft embrace.

There’s a listening ear, an understanding nod and a hot cup of coffee; all free of charge.

There’s colour in every corner, with smiling portraits hanging on the walls.

There are doctors and nurses dressed in anything but white; there are no doctors lab coats to give our little ones a fright.

An ambulance is a special taxi, ordered to delivery our special ones home after a stay.

Extended family can visit; there’s plenty of tea and a tour of the hospice to quieten their fears.

There’s time given to each family there; be it a shopping spree in Dundrum, a listening ear or just to hang out in the family quarters, upstairs.

Music and laughter fill the air as a clown may pop up from anywhere.

Now, it’s worth mentioning that a lot of what goes on inside a hospice –

Is done by volunteers with hearts bigger than most and hands ready to help without a fuss.

The entertainment is next to none; from family days to Superheroes week and every week in between, there’s always something going on with the team.

It’s a place where time stands still for families like mine; we get to just be and perhaps that’s the greatest bit of all.

A hospice is not scary, sad or something to be feared-it’s simply a safe place to make memories and talk through obvious fears.

I get to enjoy Ethan, laugh and play with him and when it’s time to do his medications or his self-care; I can go off and bring my other boys out to play.

There’s someone there for Ethan while we spend some time with our other boys.

But if our boys should need support there’s always an outstretched hand or a listening ear.

It’s respite, a break, a mini holiday given to families like mine to ensure we self-care.

It’s a place that leaves you in awe of the wonderful staff, volunteers, cleaners and the talented chefs.

What is a hospice, you may have wondered?

It’s a place full of laughter, support, friendships and perhaps some tears, all different types of tears; happy, sad, overwhelming, full of pride and pure love and appreciate for the kindness shown to not only us but our wonderful son, Ethan.

So, thank you Lauralynn Children’s hospice for opening your doors to us and giving us time to just be a regular family.