Solving the Back-to-Work Dilemma

This transition was difficult to say the least.

I did not just get hit with knowing my son would be born with spina bifida, I was put on strict bed rest at 24 weeks in the hospital.

Needless to say, I could not keep a job while being confined to a bed 23 hours a day….

22 if they allowed me a shower.

The first days and week came easy… extremely easy.

I had this menu I could order from up to 4 times a day, a TV right in the room, a bed that had endless possible positions, and nurses who beckoned to my call.

All I had to do was stay in bed, and allow my baby boy to continue developing and gaining that weight (which gave me the excuse, hey the extra weight is him not me, lol).

Things started to get hard and depressing when my menu options were exhausted and the TV channels were all the same.

Aaron, my fiance, as well as my family all had to return to their daily working lives, and leave me at the hospital.

Oliver ended up being delivered at 30 weeks, ending my bed rest at 6 weeks total.

When I was able to bring Oliver home, at what would have been 36 weeks gestational, I was so busy I didn’t think twice about wanting to work again.

We had appointments with doctors for his diagnosis, for his newly added diagnosis from being born premature, and therapy appointments.

You’d think being a first time mommy to such a fragile baby was time consuming enough!

Oliver is 1 year, 10 months adjusted now and our appointments have spread out to every 3-6 months, versus every other week.

Everything now is mostly follow ups, and the daily rituals with our new founded friends, the physicians.

Yet here I am, one whole year later and I still do not see employment in my future.

I initially battled the yearning I had to work and make money of my own, but now in this fun stage Oliver has hit where his little personality is sprouting, I battle not being able to ever leave him.

Every mother hits this stage when deciding whether to go back to work or not.

What will I miss while I’m working?

Will I lose that bond with him or her, now that I will be gone and someone will take my place?

Is it worth the money?

Everyone has a different answer to these questions.

I figured part time work would be the path for me, so I could still attend Oliver’s therapies and schedule all other appointments in the AM or PM depending on when I worked.

So I applied and had some interviews, in which I was honest with letting them know I would try every effort to schedule around work but occasionally I would need that trip up to Dallas for those all-day appointments.

Well, I never heard back from those jobs or if I did, I was not their primary choice.

I took this as a sign, and as I scrolled through my bad habit I call Facebook, I found a post by Firefly.

They were looking to recruit more parents to blog about their experiences with their children.

I couldn’t think of a better sign that I just needed to keep my butt home, enjoy my son and the endless appointments (yea right), and just blog for others about our everyday and not so everyday life.

So here I am, 6 blogs into it, and I absolutely love it!

This also leaves me enough time in my life to horribly fail at all these “crafts” I try tackling.

For those stay at home moms who just aren’t bloggers but have found your calling elsewhere, please feel free and share with us!

The Redundant Stair-Gates

They stayed in place when her sister came along two years later but now, as Lou Lou approaches the age of 4 and can only sit unaided for a matter of seconds, they’re just getting in the way.

This got me thinking about her ‘delay’ and what it means in practice.

We’ve all been there.

Bags packed, nervous excitement, waiting for the plane and watching the departures board.

Anxious to know which gate etc but then the dreaded word ‘delayed’.

Next thing you know, you’re dozing on uncomfortable chairs or spending the last of your euros in duty free, playing the umpteenth game of backgammon or turning the pages of your last holiday read.

You’re stranded, time stands still and you just can’t wait to get moving again and be on your way to where you need to be.

Our daughter was delayed on the outbound journey, not the return.

A ten night hospital stay at ten weeks of age with infantile spasms and a catalogue of seizure types (I’m not sure how many of the 40+ kinds she exhibited) and we narrowly avoided intensive care.

From then on we were prepared for some delay. How could she develop normally when the clusters of spasms kept on coming?

Then we achieved control of seizures thanks to an increase in medication and progress was made. She engaged in play and in us, smiling and giggling.

Those were good days.

But her card was marked.

An assessment was made at the child development centre and a team put in place with an OT, SALT and Physio.

Plans were made and early intervention sounded impressive.

But then new seizure types appeared and built up into almost constant clusters of focal seizures.

We were suddenly back in the departure lounge and our plane was grounded.

Clinic appointments, letters, EEGs, MRI scans, global development delay changed from significant to severe to profound and multiple learning difficulties.

More milestones missed and, in this last year, talk has turned from plateau to regression.

I abandoned the traditional mother and baby groups early on as they became too painful to attend.

Yet now the special needs groups that replaced them for us and were our safe haven, have new members whose children (while also delayed) are quickly surpassing mine.

Lou Lou started nursery in a special school last year so at least that’s offering us a place where she can just be and at her own pace.

It’s hard. I won’t try and hide it; it hurts and it’s hard. But our Lou Lou can only follow her own path.

And we don’t know where it’s leading.

But we’ll lead her down that path as far as we can and for as long as it takes and we’ll never leave her side.

National Trust – A Lovely Family Day Out

I have lovely warm (well actually quite often rainy and cold!) childhood memories of family days out at National Trust/ National Trust for Scotland properties.

I grew up in Scotland, so our favourites were Culzean Castle in Ayrshire and Brodick Castle on Arran.

We rarely actually ever went into the ‘big hoose’, it was all about spending time exploring the grounds….and my Granny was a champion ‘hider’ for all of us little ones to ‘seek’ out (she was usually to be found amongst the rhododendrons)!

When we moved to East Anglia, when Twinkle was a baby, visiting our local NT properties seemed like such a natural thing to do for a happy family day out.

Twinkle loves the outdoors.

She is very sensory and just loves the outdoor experience in all weathers! The sights, the sounds and smells!

She enjoys the contrast between the woodland areas (with the wind in the leaves and the shadows of branches against the sky) and the ordered formal gardens with their colourful flowers and scents.

Access within the most of the actual houses is not generally ideal (or even always possible at all) as of course they are old buildings restored for historical representation and are often very awkward, often impossible, to adapt (our ancestors were not generally known for their inclusive  design!).

However for us the houses don’t really matter, as neither of the children are in the least bit interested!

The main thing is that the grounds have good access and then of course the café! (cake is usually a key feature of our day out!).

We have several estates close to home so we took out a membership and have certainly got our money’s worth out of it!

I have even started planning our holiday journeys around stops at various NT sites!

We quite often have long car trips from East Anglia to central Scotland (the NT and NTS have reciprocal arrangements so membership are valid in both) and rather than stop off at a soulless service station, we now try to stop at one or two NT sites on the way – where we can eat at a nice café, use clean loos and let the kids have some fresh air and a play.

My only criticism is that (so far!?) we have not come across a Changing Place toilet at any of the properties we’ve been to…..if the NT could have a wee look at sorting that out then it would take some beating as a perfect day out (starting with Anglesey Abbey please!)!

Stockholm Syndrome

When Miss Z goes into the hospital, I go with her.

We are a two-for-one deal. Hospitals are frightening places at the best of times, let alone when you are a 4-year old girl with a visual impairment and a limited understanding of what is happening.

No one likes children’s hospitals.

They’re not happy places, no matter how many enthusiastic volunteers, visiting therapy dogs, colourful murals or bedside balloons there may be.

It is the stuff of parents’ nightmares – no matter if your child is there with a broken wrist or a life-threatening condition.

No one – apart maybe from the people who work there – actually want to be there.

But, I have to admit to often feeling a huge sense of relief and calm when Miss Z is admitted to hospital.

I relax. I let go of that breath I’ve been holding.

I wouldn’t go so far as to say I’m happy – after all, we are there because Miss Z is unwell – but I find it a comforting place to be.

I know, I know. I read that last sentence and even I think I’m crazy.

Maybe I’m suffering from a sort of Stockholm syndrome – where hostages grow attached to their kidnappers.

Forced into hospital (generally by bacteria, viruses or seizures instead of kidnappers), I develop an attachment to the very place and people who are ‘imprisoning’ Miss Z, and by default me.

Strange, maybe, but true.

As a working mother, my life is constant triage. I’ve got a work deadline, Vegemite has a school event and Miss Z is unwell – what do I do first?

Ballet class, hospital appointment, conference call – how do I do them all at the same time?

Added into the triage mix is a never-ending ‘to do’ list of all the little (and not so little) activities of life: grocery shopping, health insurance claims, dog training, taxes, post office, prescription refills, hair appointments, emails, filing, ordering more formula or medical supplies for Miss Z, tidying, and so on…

But when Miss Z and I are in hospital, all that other stuff is put on hold.

I can pause all those other activities. My focus is entirely on Miss Z and getting her well.

Yes, that does sometimes involve a constant stream of text messages to make sure Vegemite is picked up from school and that work tasks are postponed or reassigned.

But at the end of the day, the responsibility is no longer on my shoulders and (as much as I hate to admit it) the world carries on without me.

That is the source of relief, the feeling of comfort, and the reason for my Stockholm syndrome.

It feels so good to put all my attention and energy towards just getting my little girl healthy again.

I have time to think about what the doctors have said – and even better, to follow up with them when, an hour later, a new question springs into my mind.

When Miss Z cries, I can cuddle her – not sit in my office and try not to listen to her carer calming her.

I can sit by her bedside and watch her sleep to reassure myself she isn’t getting worse, rather than trying to keep an eye on her while making dinner.

I don’t have to second-guess myself regarding Miss Z’s health when we’re in the hospital either. Miss Z has grumpy days, where she does little besides fuss and cry and sleep.

She also has days when she is unwell, where she does the exact same thing.

There have been nights when she has screamed inconsolably for hours for no apparent reason, when she’s gasped and wheezed for breath, when she hasn’t been able to keep medicine or formula down – then come morning she is perfectly happy and well.

I may know Miss Z better than anyone, but I spend a lot of time trying to decide if I should a) ignore it; b) give Panadol; c) take her to the GP; or d) go to the Emergency Department.

I am a mother, not a medical professional, so it can be hugely comforting to be able to call a nurse at the press of a button and ask for advice on the spot.

I’m not saying a trip to the hospital is on par with a yoga retreat – far from it. I would do just about anything if it meant that Miss Z never had to darken the door of our children’s hospital again.

But, whether it is Stockholm syndrome or just a funny kind of respite, being here is not always such a bad thing.

Adapting is Good… or Is It?

I just know that I wanted to scream. Our council DFG team OT is lovely.

But we live in a 1930’s semi-detached house with steep stairs, no landing to speak of and which has been extended by previous occupiers giving a lovely, quirky family home.

With steps everywhere.

We bought this house to raise our family in, so talking about what they want to do the change it is upsetting because it Should Not Be This Way.

Sam is only 3, he’ll be 4 in April. He’s tall too, at just under 1m in height, but like his Dad he’s slender.

We have to lift him everywhere, upstairs to bed, into and out of the bath, into his wheelchair to go into the garden; steps really don’t help the issue.

And as his Dad and I are not getting younger, our backs, arms and muscles are starting to show all the signs of too much lifting, wear and tear.

So, we reached the conclusion that adaptations needed to be discussed.

After talking with the OT we learnt the following:

1. All staircases are not created equal. Ours are too narrow and too steep to safely put a stairlift in place; no landing means the lift wouldn’t be able to turn, plus with Sams seizures he could be injured.

2. A stair climber is also out of the question, see point 1.

3. The only option would be a through floor lift.

4. Our bathroom is too small to adapt so a downstairs bathroom would need to be built

5. We wouldn’t be able to put hoisting tracks anywhere in the house, due to the difficult shape of the rooms The problems in our current house are not unique nor particularly unusual.

A through floor lift would be HUGE and we’d lose half our front room and a bedroom.

The DFG grant wouldn’t cover the cost of an extension AND a lift so it would be one or the other – and even with a lift Sam wouldn’t be able to access the upstairs bathroom.

Which left us with a big decision to make; do we stay and make do, or move house?

After much soul-searching early in 2014 we decided to move. We started to look round for suitable properties – we really wanted a bungalow we could adapt, or land to build our own place.

We put our property on the market in May 2014. It meant that we in effect drop out of the DFG process for the time being, and will need to reapply once we’ve moved.

This will mean around a 6 month wait for another OT to come and assess Sam again. We can live with that, if it means Sam gets a home he can actually live in and access!

Councils will only deal with access into and around a property, so access to gardens isn’t covered (apart from allowing you to get OUT of your house and INTO the garden – if this means you can get onto a patio but no-where else, tough.

However, this morning we’ve had a breakthrough.

Almost a year ago, when we first started looking we found a dormer bungalow, set back off the road with a large garden.

It looked like nothing from the front or from the pictures, but the floor plan showed that we could easily move Sam around it in his chair, and hoisting could be put in at a later date.

We never imagined almost a year on we would still not have sold our house.

However, we did find out that we can rent our existing place out; this would cover the mortgage and allow us to move… and the property we loved was still on the market at a lower asking price.

This morning, we put in an offer and after a bit of haggling agreed on a price.

Fingers crossed everything now progresses swiftly and smoothly!

We will be living downstairs in the new place until we can afford to have adaptations done and we’ve been through the DFG process again… its going to be tight financially but we’re determined that Sam will have a home that is not only accessible to all of us but that does not look like a hospital ward!

We’ve already been researching bathing aids/wet rooms and know we’ll have to cover a lot of the cost, but Sam spent most of his first year in hospital, including his birthday; we’ve all seen enough of the inside of a hospital to know we don’t want to feel like we’re living in one!

As the move/adaptations progress I’ll update with what we’ve learnt etc… fingers crossed please guys x

Making Provisions

And then I obsessed about dying again. Cold sweats. Because who would look after Alex when I was gone.

Who – when sometimes the effects of his disability drove me to distraction, made me want to give up, but I didn’t because he was my son, because I loved him to distraction as well – who would do that for him instead of me?

Who would find the compassion needed to understand what he was trying to communicate?

Who would care enough to change him, undress him, bathe him?

Who would take the time to find out what made him happy? Not just now, not just with cute smiley little-boy Alex but later, with grown up man-boy Alex. Probably not so cute.

This is a grieving process I think most parents of children with additional needs go through. In the usual scheme of things all you can hope is that you give your children the life skills, the toolkit, the confidence to get on and make their way in the world.

But with Alex… he’ll always be reliant on the kindness of strangers.

Throughout his life.

Because as his mother, I can only take him so far. I will get old, unable to lift, brain addled and I will no longer be able to fulfil that role.

There was a time that thought had me in floods on the floor. Now it just makes me misty eyed as I type.

This is life. This is how it is. I cannot change it.

Railing against it makes no difference. All I can do is put in controls and hope the world will love him as we do.

So we re-did our wills with a discretionary trust for Alex. And with that came a sense of calm.

They contain a detailed care plan, clear direction as to how we would like Alex to be looked after. We didn’t want anyone trying to second guess us.  We wanted no grey areas.

This is what we want done, this is how we think you should do it.

Please include Emma at all times. But don’t make her do it by herself. Because that is too much for anyone to carry by themselves.

I thought of detailing our care plan, but actually, everyone is different, and everyone will do it a different way.

So I don’t know how helpful it will be.

What I would say is: Don’t put it off.

Get this thing done. I can’t sugar it: after my initial consultation with a very lovely solicitor I cried in my car, as my lovely friends who I texted saying this was so so hard to do and who texted back saying ‘we know, and we’re sorry’ know only too well.

But the relief of This Thing Done is palpable.

If you live in the UK Cerebra do an amazing voucher scheme where they will put £350 towards solicitor’s fees.

Our solicitor capped their fees at the voucher level. Which was lovely. Mencap have a free guide to the different wills/ trusts you can make.

It’s incredibly helpful:

Here’s my Secret Weapon for Surviving Long Hospital Visits…

They, at Scottish Rite Hospital, will be cathing Oliver to fill his bladder up then test his pressure.

We will move on to Nuclear Medicine and have him injected with a dye, wait about an hour, and go back to have scans to make sure his kidneys are functioning like they should.

Due to Oliver’s diagnosis of spina bifida, he has a higher risk of needing to be cathed due to nerve damage, and an incompetent bladder.

So far, Oliver has been able to go on his own without any help.

We are on medication for his bowel program (lactulose and sena).

I have found these easy to take when mixing them with his formula.

We do them once a day, a bottle apart.

So being at a higher risk for these bladder problems, it thus puts him at a greater risk for urinary infections and all those nasty things that could harm the kidneys.

This is why we do the testing, and this is why injecting this dye is our only choice.

Oliver doesn’t just have this type of urology testing though.

He has had appointments for the Spina Bifida clinic at Scottish Rite, neurology appointments for the VP shunt he has placed, visits to the nutritionists, therapists, podiatrists, orthopedists and more!

I have literally opened up a new section in my brain to solely remember his doctors’ names, reasons for visits, numbers, etc.

If you know babies, then you know hours and hours stuck at doctors’ offices can be quiet the hassle.

For this, I have come up with my cry-proof method to making Oliver relaxed and comfortable during these hour long visits.

I would first like to introduce this awesome toy I found at Baby’s R Us.

It has this activity set that can be removed and you can insert your ipad device into a screen protected area.

It has a little piece that if you rotate it, it will block the home button so your child doesn’t constantly click it, exiting the program by accident.

Now I am not one to just put an electronic in front of my child to keep him or her busy, but this works wonders for those busy appointment days.

Even if we don’t use the iPad, Oliver can keep somewhat busy with this activity set that can click over the iPad.

For Oliver tho, he enjoys this free app that shows fish swimming around like an aquarium.

It also has the cute little lullaby music that puts him right to sleep!

Also be sure to pack extra food, incase the stay runs longer than expected and if you use diapers, bring extra!

I once ran out of diapers on our first visit to Scottish Rite and it was not fun.

Now to keep Oliver comfortable, I have a stroller than can interchange into a little bassinet and I bring a blanket to keep him nice and snug.

Visits at the doctors are pretty uneventful now.

Of course, if you have any quirks that work for you and your family, we would love to hear them so please comment!

Special needs parenting: “I could never do what you do”

After a very rough pregnancy, my youngest daughter was born at 25 weeks gestation.

She spent over six months in the Neonatal Intensive Care Unit (NICU), and it was by far the hardest time of my life.

We didn’t know if she would pull through on many occasions.

After coming home at 6 months old, she was on oxygen, needed regular suctioning and was on a tube-feeding pump.

Up until she turned two, I took her to the Emergency Room every few months for chest infections and she was always admitted.

At four years old now, my ‘little miracle baby’ has many long-term health conditions due to her severe prematurity.

I couldn’t count on my hand the number of times my mom and my friends have said something to the effect of “It’s a good thing that you’re a nurse. I could never care for Brielle.”

These words stir up many emotions for me.

I’m not really sure how to process it.

Yes, I agree that my nursing background and previous learning has prepared me for some of the tasks and care needed to look after my daughter.

But this is my little girl… she is not my patient and this is not my job.

It’s entirely different caring for your own child.

I am thankful that my previous knowledge works to my advantage in caring for B but sometimes I just wish I didn’t have to be “nurse” to my own little one.

Why did she have to be born so early and why does she have so many issues?

Life is just so unfair, it really is.

I feel like my nursing did not prepare me for many things that I have dealt with since having B.

I had never seen a premature baby, never set foot in a NICU or held a teeny baby on a ventilator with all sorts of wires and tubes attached.

Getting her out of the incubator and onto my chest took the assistance and watchful monitoring of three professionals and was highly stressful at first.

No amount of training prepares you for seeing your precious babe hooked up to all sorts of machinery and fighting for their life, countless alarms beeping in the background.

I have many friends who’ve learnt the expert care for their children, with no nursing or medical training.

You just have to.

If you have a child with medically complex or special needs, you pick up the skills you need to best deal with their care and help them thrive.

That is a parent’s role and calling.

We do it out of pure love.

And I believe that you could do it too, if that is what life brings your way.

I know my life is so much fuller and happier because I have Brielle.

I’m not saying it’s been smooth sailing – far from it.

It’s been a rollercoaster ride.

But at the end of the day, to see her little smile and her eyes light up, although she cannot talk, makes everything worthwhile.

5 Things this Special Needs Mom Will Never Say

There are absolutely no blessing in my daughter, Bethany, having had a brain tumor nor are there any blessings in the disabilities she has acquired from complications during the surgery required to remove it.

Granted, I do believe it’s true that having a child with a life threatening illness has taught my family the things that are most important in life.

I’ll be the first to admit that some good things have happened to us that never would have happened if Bethany had not gotten sick.

Because of Bethany’s illness people who would probably otherwise never have chosen to bless us have become huge blessings in our lives!

Yet even so, to say that my precious daughter’s suffering through months of excruciatingly painful cancer treatments, living with daily debilitating seizures, and enduring the emotional torture of having a difficult to control behavior disorder would be an incredibly unloving and cruel insult to her.

I wouldn’t cure my child even if it were possible

Sadly, I’ve heard many parents say this.

They believe that taking away their child’s disability would be taking away their identity or the essence of who their child really is. If your child is truly happy and not suffering physically or emotionally in any way from their disability, then I certainly have no problem with that!

But my daughter has suffered the unspeakable tortures of brain tumor treatments. She still suffers with physical pain and suffering from having seizures every single day.

She suffers the emotional turmoil of sometimes not being able to keep herself from hurting the very ones she loves the most and she battles with the side effects of several seizure medications bombarding her brain every single day.

If a doctor told me today that they could cure brain tumors and cure Bethany of her seizure and behavior disorder right now, you better darn well believe I’d take them up on their offer in a New York minute.

What kind of a parent would I be if I could relieve my daughter of her pain and suffering but chose not to?

God has never given me more than I can handle.

I am reasonably certain that I’ve been given way more than I can handle many times over already.

I can assure you that standing by while helplessly watching my daughter suffer for fifteen years has been more than I can handle.

Seeing my daughter lying on the couch in a seizure stupor, unable to participate in normal, everyday activities that most people take for granted nearly every single day of her life for years on end has been more than I can handle.

Seeing my daughter disappointed yet one more time because seizures have prevented her from participating in an activity that she has been looking forward to has been more than I can handle.

Worrying about what will happen to my precious, beloved daughter when I am no longer here to care for her is more than I can handle.  I know that I have been given more than I can handle during the many times I have felt utterly alone, helpless, and hopeless and all I wanted to do was crumble to the floor in a crying heap.

My daughter’s disabilities are God’s Will.

God may well have allowed my daughter to get a brain tumor and become disabled for reasons He only knows, but I can’t and will never believe that it is His will that she or anyone else becomes seriously sick, disabled, or suffers in any way.

I may never understand why Bethany has been asked to suffer in such a dreadful manner or why God did not prevent it from happening, but I absolutely must believe that someday I will understand why, that it will all make perfect sense to me, and that it will have been for some grand and noble purpose.

I give up. 

Though it may seem at times that there is no hope of Bethany ever having a life free of seizures and debilitating disabilities,

I will never give up hope or searching for that one elusive medication, treatment, or therapy that just might set her free her from all her pain and suffering.