For those few hours after school or if they are still little and at home with you all day?

My little munchkin is seven years old now – it’s hard to believe!

Although she has hypotonic cerebral palsy and cannot walk unaided yet, that doesn’t stop her being VERY active and inquisitive.

She scoots independently on her bottom, or can walk hand-held or with her walker.

Having multisensory impairment (deaf and mostly blind) only seems to heighten her curiosity and amazement with the world!

We recently stumbled across the perfect local indoor soft-play.

And have invested in a monthly pass as it’s such a great gross motor skill exercise or ‘physio’ for Brielle.

She has great fun on the slides, the ball pit, stacking blocks, climbing and much more.

Thankfully her 11 yr old sister loves to be her helper so it gives me a little bit of a break (added bonus – they don’t charge for her!)

Living in Northern Ireland, soft-play is ideal for most of the year when it tends to be rainy and overcast!

That being said, there are many soft-play areas that didn’t have much things that she could do really, so it’s about being picky and finding a good fit for your child’s individual needs.

A great playground with swings, slides, ‘twisty-things’ is hard to beat!

Walking to or popping into the playground on our way home from school is one of Brielle’s very favourite things to do!

Again, it encourages physical movement and gross motor co-ordination and helps her communication to blossom as she requests more of certain activities.

Brielle was very blessed to recently get a supported trike with a parent handle finder by Whizz-Kidz and it’s fantastic!

If you live in the UK, I highly recommend applying to a charity for funding for a special trike, they are amazing but very expensive!

Brielle loves taking a ride to the playground now or to the nearby beach (instead of being in her wheelchair).

We park her trike by the rocks, and she strolls hand-held on the stony sand, and just loves to touch the water’s edge!

A spring fair recently visited nearby and Brielle loved going on some of the little rides.

She’s quite a thrill-seeker.

Swimming is also a favourite activity with her sisters, but quite a lot of effort and time, I find you really have to be in the mood!

Life with four kids was never going to be a walk in the park J I absolutely LOVE being a mama and caregiver, but that doesn’t cancel out the stress or downright difficulty of it sometimes…

Since January 2018 in our house, we’d had repeated seizures and hospital admissions and appointments relating to epilepsy, a case of influenza A, a broken arm, three children’s birthdays, a severe mystery rash requiring hospitalisation with IV antibiotics – amongst all the usual busyness of everyday life with four children, the youngest with many additional needs.

I’ve had to cancel two separate trips!

The disappointment of not being able to make a flight to see your dear friends – one in Canada who is very sick, and one in London with a new baby, was unbelievable.

But staying home to look after your ill child takes priority. Sometimes it seems like déjà vu – or the ‘story of my life’.

Many tears were shed feeling sorry for myself and situation.

It’s a really helpless feeling when you’re stuck in a hospital, you know your daughter will be OK once the medicine kicks in and give it a few days, but in the mean time you’re missing your flight today.

I’m so thankful to report that all four girls are currently in good health!

PHEW!

I got to reschedule the London trip with my beautiful teen and had some wonderful times together! And I am finally taking the trip to Canada and the States next week!

When I got the girls back to school after Easter break this week, I set right off to finding some balance in my life between being a mother, housewife and caregiver.

I booked in to get my eyebrows done, have a lovely breakie out with my friend, and today I enjoyed an HOUR-LONG facial!

Thank goodness for some quiet hours while they are at school!

I think I would go insane if I didn’t get the break…

We all KNOW how important it is to set apart some ‘me-time’- it’s just a matter of doing it, isn’t it!

Please-  do look after yourself, or you’ll be too burned-out to be a good parent and caregiver to your little one!

Don’t ever feel guilty for spending time or money to get away from the everyday stresses in your life.

You do deserve it x

Bowler writes that sometimes silence is the best response-

“The truth is that no one knows what to say. It’s awkward. Pain is awkward. Tragedy is awkward. People’s weird, suffering bodies are awkward. But take the advice of one man, who wrote to me with his policy: Show up and shut up.”

YES! Totally agree with that! Often, we don’t have the right words to say. Mostly, those suffering just need to know you’re there, that you care.

Cliché phrases and lots of questions are NOT going to help.

One phrase that people like to offer as condolences for one’s suffering, or loss, is:

“Everything happens for a reason”.

Come on…really?

Now I take great comfort in my faith in God, and His love and presence in my life. But I accept that I live in a mixed-up, often evil world where lots of bad things happen.

Suffering and pain exists in all of our lives.

Imagine saying to me “Everything happens for a reason” in any of these circumstances.

~Losing my dad to cancer before my sixth birthday.

~My daughter develops seizures at six months old, and continues to have seizures and be on medication for epilepsy (she’s almost 9 now).

~My baby dies inside me after just 16 weeks. She’s perfect and tiny, but painfully still as I hold her in the palm of my hand.

~ Brielle is born far too early and struggles to live for six whole months and a week in the neonatal intensive care.

~ She is then diagnosed with multiple disabilities as a result of her being premature. DISABILITIES. I thought my baby was going to be “fine”.

~One of our best friends is diagnosed with terminal liver cancer at just 40 years old. He’s Daddy to five beautiful children.

These are some of the hardest things I’ve had to deal with in my life.

I know each of you reading will have your own list, too.

Having a child with special or complex needs is difficult. It’s never helped when someone commented on poor wee Brielle, “ah bless, well everything happens for a reason, and you’re the best mum for her”.

It hurts, and it’s difficult to see her many daily struggles, and the things she can’t do.

Sometimes the best things my friends can do, is just BE there, and say nothing at all.

A trip to visit my best friend and family and also attend a wedding with my husband in beautiful Whistler. A little getaway from the kids…or not.

Last week I had to cancel my flight. My daughter has not been well at all this past month and a half.

Both of us parents being away (and a whole-day’s-travelling- distance away at that) was just going to be too much.

Did I mention that I HATE seizures?! I actually detest them.

They are one of the most terrible things in this world in my mind. So much unknown. So many questions.

What was the trigger? Why now? Why my little girl?

Two out of my four daughters have epilepsy. SO not fair!

Elizabeth started having grand-mal seizures at just six months of age, and she was on medication until she was seven years old.

All her testing always came back completely normal- so we had high hopes she would someday outgrow her ‘childhood epilepsy of unknown origin’.

She was weaned off the meds, and went for a while with only one break-through seizure last year.

Until last month. She’s had four seizures now since mid January and is back on medication for the foreseeable future. Awaiting the results of a recent EEG and MRI.

No known trigger or cause that we can pin down.

We feel helpless. On high alert.

She’s fallen twice and banged her face pretty bad at the onset of a seizure. The last three have been in her sleep and she’s bitten her tongue.

Thankfully she has a great big sis (aka ‘lil angel’) that shares her room and wakes me up if she hears the strange gulping and moaning sounds of a seizure.

Life to some degree has come to a halt. I’ve had to put some things on the back-burner and focus on being a mom and carer to my girls.

Travelling can wait. My nursing shifts can wait. Classes and massages for my essential oils can wait. Meeting friends for dinner and any leisure plans can wait.

Family comes first.

The more children I’ve had (I’m done now, thank you very much!), and the more health issues that arise, the more I learn that it takes a lot of time and patience, and love, to be a mama.

You will need to make LOTS of sacrifices. You will need to improvise, and revise your plans, often!

Life doesn’t always work out the way you either want it to, or thought it would.

But even so, I’m ever thankful for each day with my little treasures, and blessed to be called, “Mom”.

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.

I’ve written many posts on sisterly love and care, but I just can’t seem to write enough, my heart is often bursting with thankfulness and joy at the love my girls have for each other, and especially for their youngest sister, Brielle.

You see, Brielle had a really rough start in life.

In her first six months in intensive care, we thought, on many occasions, we’d have to say goodbye.

Brielle was not one of the ‘lucky’ preemies who grew and developed into a healthy baby without long term health consequences of her prematurity…

Quite the opposite, she developed many long term health issues and disabilities as a result of being born fifteen weeks early.

But thank God, she is still a very happy, loved and loving little girl of six now! To see her emotions develop and her attachment to each one of us grow, is absolutely amazing.

The fact that she can cry now, or get upset and express needs and desires is a huge thing. It was so hard when she was much younger, she was completely silent, never cried or hardly moved at all.

Life would be much harder if I didn’t have all my great girls to help with and dote on their little sister.

She knows each one of them, their ways and quirks, and gets so much joy playing with them- let’s face it- it’s different playing with a child (small person) than a grown-up!

They love to dance to music in the living room, build block towers together, do the light box, and swing together at the playground and many other activities!

Brielle also loves a good snuggle, she’s so cuddly the eldest sister calls her ‘my koala bear’.

There’s really nothing the girls wouldn’t do for their little sis.

Due to her disabilities, sometimes they have to be her voice, her eyes and ears, and support her as she walks or lift her up.

I’ve been so blessed as a mum over the years, as I see the love and devotion develop in them, their love given so freely and complete acceptance of Brielle for who she is.

They don’t focus on what she can’t do, but rather on what she can do, and are eternally optimistic and positive.

Sibling love is like nothing else!

Are they hyperactive or do they suffer from high or low body tone?

Have you ever tried a simple foot or body massage on your little live-wire to relax them? Let me share with you some beneficial effects of massage on the body.

I’ve found massage to be a lovely bonding experience with my children, using a simple massage lotion or any plain body cream I have to hand.

I also love my essential oils, for instance I use pure lavender oil diluted with a carrier of coconut oil (and many other homemade concoctions!)

Massage is SO therapeutic and relaxing.

Why- because science has shown that even a few gentle strokes causes the brain to release endorphins (the body’s natural opiates, to give a ‘high’ feeling) as well as the production of oxytocin, which gives us a nurturing and loving feeling.

Interestingly enough, both the recipient, and the giver of the massage will experience a release of oxytocin!

I’m going to briefly outline a few of the body’s systems and the positive effects massage can have:

Muscular skeletal system- Increase flexibility, improve muscle tone, reduce cramps, improve posture, and improve mobility and range of movement.

The benefits of massaging muscles can be described as the 3‘t’s: releasing tightness, tension and toxins.

Digestive system- Stimulates the parasympathetic nervous system to switch digestion back on (opposite of ‘stress response’) and speeds up elimination of waste products from body- alleviating constipation.

Endocrine system- Counteracts the negative effects of adrenaline, bringing body back to a state of homeostasis and balancing the hormones, the release of endorphins and oxytocin as previously mentioned which gives us a positive high feeling.

Respiratory system- Encourages deeper breathing by relaxing the body, stimulating the parasympathetic nervous system and improving posture, and improves gaseous exchange throughout the body.

Lymphatic system- Assists with the drainage of lymph from the cells, improving removal of toxins from our bodies, boosts immunity as it stimulates production of lymphocytes (antibodies), reduces oedema (swelling).

Pain control- Can mask pain by giving a pleasurable massage as these positive nerve messages travel quicker than painful ones (pain gate control theory).

By reducing pain and increasing feelings of general well-being and relaxation, you can encourage more restful sleeping.

Psychological – Gives us a feeling of wellbeing, a lovely bonding experience between parent and child, allows us to ‘switch off’ unwind and be at peace, calming the mind and body, preparing body for a deeper night’s sleep

I really encourage you to look at doing a simple foot massage before bedtime or during the ‘afternoon slump’ to relax and calm your little one.

There are many online and local courses in baby and all sorts of massage available, too.

You won’t regret any time spent in massage once you see the many benefits first-hand!

I had seen an awesome video of a little girl with cerebral palsy on one of the charities websites, she was using a ‘mobility assistance’ doggy with a harness to hold onto whilst walking. I thought, my goodness!

How wonderful would this be for my Brielle who also has cerebral palsy, and uses a walker but can walk hand-held?

Having a canine-friend and mobility partner would open up so many opportunities for her- independence, confidence, peer-integration, companionship!

It would be fantastic if we could get a dog trained not only to wear a harness but serve as a guide dog, too. Brielle is also severely visually impaired.

I was left quite deflated after sending emails, online messages and making phone calls to all the charities- we were either living in the wrong region, or there was currently such a high demand for these dogs, that we weren’t even able to go onto a waiting list!

I’ve mentioned to our social worker and also Brielle’s mobility specialist so they’ve said they’ll look into it, too.

Why is it that support and disability assistance is SO hard to come by? I think part of the issue is that there’s no funding.

So many of these charities are relying on generous donations to fund their services. The government really don’t put any priority on equal access or equality for people with disabilities.

The people in power reckon that there are all these charities to fill the HUGE gap in resources and equipment that children with special needs, need. Leave them to it!

It’s really easy to get overwhelmed and disheartened as a parent, and feel as if you’re an island, as if no one knows what you’re dealing with, and no one cares. I’ve been there MANY times!

We need to rally together and support each other during these times. And find friends and professionals who really do care!

If no charities are able to train and fund an assistance dog, as a family we may look at finding someone to train a dog privately. But I have NO idea how to go about this, either!

I would be so grateful if anyone reading this has any experience or advice regarding finding/training/funding a disability or mobility assistance dog.

I’d really love to hear your success stories, too.