One in a Million

My baby (well toddler, but she will always be my baby), has a rare condition, it is so rare all the tests are coming back inconclusive.

We are on various research programs and having a rare condition means you are never really sure what will happen, or what the prognosis will be.

Before having my baby, I had NO idea that there were conditions that were either; so rare you never really get a primary diagnosis, or that it can be months maybe even years before getting a diagnosis.

I just assumed you could take a blood test and that was it, the doctors could diagnose you.

I never realised that I would be putting my baby under general anaesthetic just to have tests done.

I never realised how isolating it is to have something rare, that you could say to people what it is or the symptoms and people look at you in confusion.

When you try to explain it their expression turns into a blank expression as if your words are going right over their head.

That while you are on the path to a diagnosis of this rare condition a lot of support groups, charities and health services aren’t really sure what to do with you, your baby is disabled but there isn’t a diagnosis so we don’t tick a box.

When we get a diagnosis, it may either be the fact that my baby is the only one in the world with the condition or that she is one baby in a handful with the same condition.

In which case which foundation do you turn to?

I never thought I would have a child with a disability let alone one with a rare condition.

You hear about these rare conditions on the TV but you never in a million years think that the rare condition would be in your house.

These programs I used to cry over as a child was going through the unknown, and here I am doing exactly that.

Having a rare condition is isolating, and yet gives you the strength to campaign and teach people about living with one.

It gives you strength to research and go further emotionally then you ever thought you would be able to.

My baby was one in a million any way but now I know she is more than just one in a million.


My brother and I are both qualified scuba divers so we’ve seen first-hand what an impact this has –

and I’ve always been laughed at by Him Indoors as being, and I quote, some eco-warrior hippy-come-rock-chick type!

And I will admit it, proudly; I value this beautiful planet that we call home.

Over the past few years I’ve done my best to find ways of trying to reduce our rubbish mountain, and I was quite pleased about how much we’ve reduced our use of plastics.

But is it actually feasible/possible to make a significant impact, when you have a doubly-incontinent, tube fed child to care for?

I give you the immense (and pungent) mountain of nappy waste we (well, Sam) generate in a week. It is quite impressive.

And the majority of the material the nappies are made from are non-recyclable, non-biodegradable. I shudder to think of the landfill.

Cloth nappies, while better in terms of bulk waste aren’t actually that much more eco-friendly, once you’ve factored in the electricity used to wash and tumble dry them, and the washing powder you use to get them clean again.

Sam’s feeding equipment is all single-use plastics; although we do recycle/reuse syringes (purely because the NHS can’t afford to supply all patients single use syringes for all their medication and feed needs).

I have been known to repurpose used flexitainers (the container used to hold Sam’s formula feed while it goes through the pump) into water bladders to set up an irrigation system in our greenhouse, but that is about as far as recycling those can get.

Having said all that, there are a lot of little ways in which we can and do reduce our plastic usage chez Voisey; Sam has a blended diet for 3 meals a day with his formula acting as a ‘snack’.

Buying fruit and veg loose, not wrapped in plastic wrap or bags makes a considerable difference to how much plastic passes through our kitchen.

As old plastic clothes pegs snap (or are chewed by the dog), we replace them with old fashioned wooden dolly pegs.

Instead of using baby wash and shampoo in bottles, soap and shampoo bars are a fabulous alternative (and so much easier to use too).

If everyone made a few small changes, we would make a big difference. Anyone fancy the challenge?

Mum Competitions

I found this statement strange, as to me parenting is unique to each child and I thought we were meant to give encouragement to other parents not bring them down as their baby’s achievements aren’t as brilliant as my child’s.

Yet I saw these parents at every group I went to, in the school playground and even in the check-out line at the supermarket.

When you mention that your baby has rolled over, their little princess had rolled at birth. When you mention that your child has said his first word, their little prince has learnt the whole dictionary.

As I entered into the world of parenting a child with disabilities, I was hopeful that this unspoken Mum competition had ended.

That 100% of us parents would be holding each other up and supporting each other.

I have found that 99.9% of parents are exactly that, I can ask for help or advice and I get non- judgemental answers.

I have had people help in all sorts of things including the best route to go up to the London hospitals, to help with how to get the most nutrients into my baby who is still 80% on purees.

I have had people state that their child doesn’t have the same thing as my baby but they will lend an emotional shoulder to cry on as being a carer and a parent is physically and mentally exhausting.

However, there is a very small minority who seems to make a competition out of having a child with disabilities.

Recently I was at a hospital appointment with my baby and a Mum came in the room, all us Mums did ‘the smile’, the smile you do when you are silently saying, “I feel you, I am with you and we are all in this together”.

What we got back however was this Mum stating how her child was more disabled than everyone in the room, that her child had to have a lot more care and attention than everyone else’s.

The comments she made, I just wasn’t expecting. I wasn’t expecting her to come out and tell me my child’s disability isn’t really a disability because it hasn’t been diagnosed.

This unfortunately isn’t the first time I have experienced this sort of competition of whose child is more disabled.

I just do not understand this mentality. Yes some children medically are more complicated and more complex than other children I am not denying this.

As parents however, no matter how small an impact the disability has on our child, it is still massive for us.

My daughter can do a lot of things that we were told she never would be able to, yet her future is uncertain and we are preparing for the worst, however I would never say to another parent, at least your disability isn’t life limiting.

We are all on a journey of disability, we are all on a journey which we never dreamed of and we are all on a journey which realistically many of our friends haven’t been on either.

So when we find other parents on a similar journey we should be supporting them, not make them feel bad because they are upset about their child’s disability which you deem is less important than your journey.

We should offer advice, we should help and encourage, not drag a parent down and make them feel awful.

Being a Single Special Needs Parent for a Week

My four girls were off school this week for half-term break. Convenient, isn’t it, how my husband had a business trip to the States and I was left, alone, to, ‘hold down the fort’!

Just joking, that’s just the way it turned out this week.

Now, after a week of him being away and me being with the girls 24/7, I can safely say that parenting alone is exhausting! Especially during school holidays!

I have huge admiration for my friends who parent solo… The day in, day out, days upon months, upon years, must be tiring, and lonely.

Massive kudos to those of you who are single parents of a child with special needs! I don’t know how you do it!

I know it’s your child, and you do what you need to do, and you just get on with it. You learn what they need and how to provide and care for their unique set of needs.

But I wonder do you ever feel like you’re going a little bit crazy sometimes? I know most parents do anyways.

I know a very special lady and her precious daughter back in Seattle, they are amazing! The love and care you pour into your little girl is hard to describe, Stacey.

It’s exquisite, it’s top notch love and devotion. You are an exemplary mother!

So my experiences of being a single special needs parent for a week cannot compare to the weeks and years of my fellow mums and dads, but here they are.

My almost 7 year old Brielle was by far my biggest handful during the school break. She has multiple disabilities due to prematurity so requires 1:1 care all the time.

She doesn’t stay still or happy for too long with anything or anyone, either! I’m typing now as she’s sitting beside me doing her coloured pegs on the grid her lightbox.

She’s happy at that for a few minutes until everything starts being thrown and I show her something else to do, like her stacking her blocks.

Her implants and glasses were thrown off too, and now she’s lying upside down on my knees.

She’s also throwing some pretty dramatic tantrums these days.

It’s getting harder to manage and deal with her now as she’s stronger and much taller than she used to be, so containing the flailing arms and legs is difficult.

She can’t express herself verbally so this is a means to let out her frustrations. The change of routine, not being in school this week, and dad being away, has been hard on her.

Needless to say, I love all my girls very much, and am thankful for extra time together this week…but I’m ready for them to go off to school in the morning, while I’ll savour a late breakie and coffee in peace.

Little Acts of Kindness

Since becoming a parent I’ve seen both the best and worst of the general public; mostly because having a child in a wheelchair does rather change your perspective.

People who push in front of my boy as if he wasn’t there, or who ignore him and talk over his head make me see red.

As for those selfish individuals who park in a blue badge space when not entitled to do so, I firmly believe there is a special place in Hell for them.

But then there’s the other people – the ones who have never met us, who none the less want to help in some way.

We’ve had people donate to fundraising events, others who’ve sent gifts to Sam together with cards just because they were touched by his story and wanted to let a little boy with horrendous seizures know that someone else was thinking about him.

We’ve discovered parents who out of personal tragedy have set up charities and support networks to help those of us still in the thick of it.

Friends of friends have stepped in to support us and Sam when we’ve needed it the most, but also when we’re actually having a good run of things, and that is just as critical.

Being a SN parent isn’t just hard, it’s lonely. I’m lucky – I can still work because Sam’s Dad quit work two years ago to be his full-time carer so I could continue working.

It means I get out of the house, have company and can focus on something other than special needs, therapies, equipment, funding… the list goes on.

I’m so tired of putting on a front; appearing strong, confident, relaxed, when my mind is scrambled through lack of sleep, pain and worry.

Close friends see through that mask, and know that asking if everything’s ok will likely result in not very much. But a coffee and chat will definitely help.

When I was younger my Nan told me to smile at people when out and about. Doesn’t matter if you’re just out for a walk, off shopping or out with your family.

Look up and smile at the people you pass, because it could be the only smile they see all day.

I still do it, and almost 100% of the time they smile back (possibly wondering “who is this slightly mad, frenetic looking woman with frizzy hair?!”).

Being kind isn’t a difficult thing, and you’d be amazed at the impact it can have to someone’s day.

A Friend in Need is a Friend Indeed

Mums of disabled kids: We’ve all got ‘that friend’, the one that would do anything for you and your child.

The one that always knows what to say, when to call, when you need an extra-big cuddle or extra-large glass of wine.

As we know too well, when we become parents of disabled children we can experience desertion and isolation, and this is all the more heart-breaking when it comes from people you classed as friends.

But this blog is not intended to bang the drum about friends deserting you when you become a special-needs mum.

There are a million blogs out there on that topic.

Today I want to talk about the friends that support and champion us. The ones that understand us and our children, that give with no expectation of thanks or reciprocation.

One thing that became apparent to me shortly after I found myself catapulted into the category of ‘special-needs parent’ was how fortunate I was to have a friend who was just there.

Yes, you. You know who you are.

For the first 12 months of my son’s life, I don’t think I’ve ever needed a friend as much as I needed you then. I’m not sure that I even knew how much I needed you then, and how much you did for me.

I certainly didn’t thank you, in fact it’s only now, five years on, that I can take a retrospective view and see just how important in my life you were.

It’s difficult to express exactly what made our friendship so valuable and instrumental in my mental health and sanity.

Often it’s just the little things that make a big difference.

You always know what to say even when there’s nothing to say.

You behave like a protective parent on my behalf when the three of us are out in the big wide world.

You cry with me when I share my sorrows.

You’ve given up your one day off to be with me and my child.

You give the most thoughtful presents; you don’t make embarrassed excuses for why you have chosen something from the toddler section.

Your first question when we meet up is always “How’s my little man?”

You show incredible persistence at trying to get me out for an evening, even though most offers are deflected by my claims of being tired and bad company.

You demonstrate continued efforts to work hard at our friendship, even when mine have been desperately poor in return.

You never tell me everything happens for a reason. Or that God only gives special children to special people. Thank you for that.

You get to know my child, inside out, even though it means having your beautiful hair pulled out and your clothes slobbered on.

You never once wince or recoil.  You just laugh and continue the play fighting that you know gives him such enormous joy.

I have stopped apologising to you on behalf of my son. You just get it.

This perseverance has paid dividends because now it’s you that he asks for when I say we are going to see a friend.

It’s your name he yelps when he sees a silver soft-top drive past.

It’s your picture he scrolls to on the iPad photo library.

You doesn’t have your own children, is it because of this or despite this that you have so much love to give mine?

Thank you, to my friend and all of the other friends out there. The job you do for us is worth more than you will ever know.

3 Ways to Help Siblings Bond when One has a Disability

Although we were all very much individuals there were times I recall the whole family playing board games or card games together and many hours spent together in the summer out in the garden.

There was almost 9 years between the oldest and youngest but somehow my parents would manage to find something we could all enjoy at our own level.

I now have two children of my own and despite the fact they are exactly the same age I really struggle to find things they can do together. The reason for that is simple: my son is disabled.

It is so much harder for families to help their children bond when one of the children has a disability.

Everyday family dynamics can make finding activities suitable for everyone almost impossible and things others take for granted such as access or suitable toilets suddenly become a huge problem.

So how can you help siblings bond when one of your children has a disability?

Here are three suggestions you may want to try:

Sensory Time

While one of my children can read, write, do her times tables and loves to dance to jump start Johnny her brother cannot speak, can’t write or read and only just has enough co-ordination to walk at 9 there is one thing they both enjoy: water play!

This joint love of water has helped them bond so much.

From when they were three and a half and shared the water and sand tray in the garden to now playing together with a playmobil swimming pool, water really seems to bring them together.

My son has a high level of personal care needs so while it would be much more convenient to simply take him swimming on his own I try and get another adult to come with me so that I can use swimming as a bonding time too.

Other sensory activities they both enjoy together are water beads, painting, and even flapping at hand dryers!

My son is a huge sensory seeker but could never work out how to make the hand dryers work so his sister presses the button or puts her hands under and delights herself in laughing and flapping in delight with her brother.

Moments like this are beautiful.

Helping them care:

My son’s needs are high and he is unable to dress himself, bath himself or even put a straw into a carton of juice.

While I do not want his sibling to feel her sole purpose in life is to care for her brother I do encourage her to help because it helps foster responsibility in her and helps secure the relationship between both children.

It’s so healthy for my son to realise and understand that other people can meet his needs and so good for his sister to give her the confidence to see she can help.

While I would never ever ask her to do anything too physical or personal or even medical she absolutely loves helping to wash his hair, typing something into YouTube search for him or picking up a toy he has dropped.

Their relationship will never be equal in terms of ability but there are benefits to her helping care for everyone.

Shared experiences:

One of the many things siblings of disabled children often miss out on is the many shared experiences other siblings take for granted.

Often disabled children are educated in separate schools away from their siblings and many of their social activities are done without their sibling around.

There is a definite balance needed between time apart and time together so I try and make a very special effort to do things with both my children.

Some activities I have found that work well are ten pin bowling (my son uses the ramp and although not able to see the pins fall he can hear them and enjoys the sound), swimming, soft play (balls pools especially) and train rides.

I take photographs often and we sit together later and talk about the fun we have had. Although my son can’t speak he points and flaps and smiles as we remember together.

Quality time together as a family is priceless.

I am not going to pretend it is easy. It takes so much planning and co-ordination on my part to help my children bond when naturally their lives are so different.

The one thing I am determined about though is that disability should not be a barrier to my children being friends.

Thankfully my hard work seems to be paying off when I catch moments like this (see image).

That makes it all worthwhile!

A Few Tips for Flu Season

The strain of influenza, H3N2, is one of the very worst, one that medical professionals truly hate. I hate it too.

As a mother of a child with extraordinary needs and a body that can’t fight the flu like others, this flu season is terrifying.

I don’t want to find out how our little guy’s body would react to having to fight off this nasty virus. I can’t even begin to visualize the treatment and outcome.

Here are some things you can do to help from spreading the flu:

1. Stay home if you are positive for the flu! You can be contagious even 5 days after the onset of symptoms.

If one of your germ infested droplets touches a surface and someone else touches said surface and then wipes their nose or mouth they could also now have the flu.

I am begging you…just stay home.

2. Wash your hands. And wash them again.

Upon entering your house from running errands or getting home from school or work head straight to the sink and wash your hands.

Lather with soap, wash every inch of your hands, and sing your ABC’s. Twice.

3. If anyone in your house is cuddled up on the couch with the flu, wash every surface in your household.

Flu germs can live on surfaces for 1-2 days. Get out your Lysol spray and Clorox wipes and disinfect all of the surfaces you can.

4. Don’t cough into your hands. I know that this should be common sense, but use your elbow.

One of our son’s favorite shows is the Bubble Guppies, and I will quote them and say, “use your germ jail.”

Use a kleenex to wipe your nose, not your hand, and wash your hands again. (Do you see the theme here?)

No one wants to get the flu, and I realize that spreading the flu isn’t intentional.

But I think if we all take these 4 precautions we can help from spreading the flu even further.

As a parent with a child who would end up in the hospital if he contracted this nasty virus, I thank you.

I know MANY other parents with typical children and children with special needs also thank you, actually, we all thank you.

And remember to wash your hands.

Silver Linings

That yes 90% of the time life is harder than it could have been but there are those little silver linings that make you smile from ear to ear.

1) Every milestone you celebrate: my older children I can just about remember their first word if I really think and scratch my head.

However with my baby I know that the first time she reached out for a toy she was 8 months old. That the first time she could be bathed without me in there she was 13 months.

That the first time she moved she was 4 weeks old and it was the tiniest movement in her fingers.

I don’t know the first time my children bathed in the big bath, I don’t remember the first time my children reached out for a toy, and I don’t remember the first time they cruised around the furniture.

Each inch stone is massive and so memorable and this is what you need to cling onto.

2) Science lessons: I got good exam results in science however since having my baby I have learned biology that I hadn’t even realised existed.

I have learnt more about DNA then I did in my whole entire coursework module of DNA. I have learnt that if your kidneys are doing this then it causes this.

I have learnt that the blood only holds so much information and that if you want to know about the brain you really need to use spinal fluid.

I have learnt that if you have an ankle that is turned in this causes twisting in the hips and other problems.

I have learnt that the body still has mysteries we haven’t discovered.

3) Sleep: for me I have a child who rarely sleeps and is awake 22 hours a day. However I also have a child who sleeps for 22 hours a day.

I have learnt that your body somehow can battle through on zero sleep. That the exhaustion is always there but somehow your mind can trick you into thinking you’re not tired.

It has also taught me that when my son who never sleeps is at school I have a baby who has a condition which makes her sleep excessively and so if the exhaustion is too much I can have a nap during the day.

I know not all parents can do this and realise how blessed I am to have this.

4) Support: I will admit sometimes people ask things about my baby that I find inappropriate however I am so happy that people are continually asking about how my baby is doing.

That they are constantly asking how we got on at hospital appointments. That they go out of their way to say that they have missed you and have been wondering how well she has progressed.

The support from random strangers is amazing, the support I get from family friends and family is amazing and although I always knew they were there, it is just special how people genuinely are interested in how your baby is doing.

5) Last but not least, I have a wonderful unique baby. I have a baby that is full of determination.

I have a baby who has taught me not to be down about things you can’t change. I have a baby who is beautiful.

I have a baby that fights to do things other babies take for granted and this just shows that she is such a fighter. I have a wonderful baby who is amazing and who is so special.

I thought I knew everything as she was my 4th baby and yet she has taught me so much.

Children with disabilities do bring so many challenges but I like to make a list at the end of the day about 5 brilliant things they have done in the day.

Even on a day where all I can see is negative situations it is something I make sure I do.

Every night I get reminded about how special my children are, every night I get reminded about how much I love my kids.