Look at the Positives

This could be a tough one but I’m writing to ask you to look at the positives.

Some people may think, why is that going to be tough?

Surely there’s always a positive in any situation?

But as a parent, carer, family member or friend of a child with additional needs there are days (many, many days!) where you just can’t see it, no matter how hard you try.

Seizures, inability to walk, pain every day, constant medications, constant therapy, diary full of appointments.

These are just a few examples of what we have to “deal with”

I can assure you there IS something positive, always.

Close your eyes for a minute, think of that one person you know with a disability.

Now I want you try and forget about the difficulties they face, I want you to forget about the difficulties YOU face too.

Keep your eyes closed and remember their first ever smile, remember that milestone that you cried over when they achieved it, no matter how small it was and remember the love you felt for them when they came into your life.

I can’t tell you that things will one day be easier for you or for them.

For some that may not be true but I can tell you that when you’re having a particularly hard day just try and take one minute or even 30 seconds out of your day to close your eyes, take a deep breath and look back at that one good day you had, remember those precious moments where you bonded and where you felt pride in something they did that once seemed impossible.

To stay positive can quite often seem like a huge effort but in all honesty, if I didn’t try to see the positives at the end of a hard day then I would struggle, I mean really struggle.

So I urge you to do the same and I promise you, it will help.

Some people think that being strong means having big muscles or that you can lift something heavy but the truth is, being strong means that you power through each day doing whatever you have to move forward and to do that, you need the right mindset, a negative mind will only make your struggles seem even harder.

Needs vs. Desires

I was going to name this article ‘why it is never just a cold’ yet realised as I was writing it that the message goes so much further.

When a baby is born, the last thing you want is for them to catch an illness, whether that is a cough or a cold, a sickness bug or anything else for that matter.

For parents of a baby born premature, this is a terrifying prospect.

The ‘little cough’ or ‘snuffle’ you have can be fatal.

Even if you don’t stay for long, simply being in the same room as a premature baby, and possibly spreading your germs can be catastrophic.

The little cough or snuffle for you can be bronchiolitis for a premature baby. It can then lead to pneumonia.

That tiny cough that you take cough drops for means a hospital stay for us.

It means needing extra oxygen, or a higher flow of oxygen if, like Alfie, your premature baby goes home on oxygen.

It means nasal cannulas and feeding tubes and heart rate monitors and everything else we fought so long and hard to leave behind.

For a premature baby to fight illness means using energy they do not have, which means losing weight.

A baby that has no energy to even eat goes downhill at a terrifying rate.

The weight loss leads to a lack of energy, which stops them from eating which causes them to lose more weight and energy, and so on, in a vicious cycle that is heart-breaking to see.

The only break is the feeding tube which they need but then you have to teach them to eat again and prevent them from becoming reliant on it.

Illness for a premature baby truly is life-threatening.

It can sneak up on them and lead to rapid deterioration. The loss of fluids and nutrients, the lack of energy.

Everything is a catalyst.

You do everything you can to prevent any illness, but it is all dependant on the people around you.

The hygiene and cleanliness you try to control with endless bottles of hand-sanitizer, the constant hand washing, and avoidance of enclosed and busy places are fruitless if those around you disregard your wishes and decisions and chose to visit with an illness.

It does not matter if it hasn’t affected you very much, the illness you have is an illness non the less.

Choosing to visit when you are ill, becoming ill or have recently been ill is never a good idea.

Parents are not asking you to stay away to be mean, or awkward.

They are not being over the top and they are certainly not doing it to be selfish and keep their baby to themselves.

They are doing it to keep their baby safe and healthy.

They are doing it to stop the setbacks and hospital trips.

They are doing it to take care of their child.

They are putting their child’s health and wellbeing above the desires of others who simply want to see the baby.

They are focusing on their child’s needs instead of the desires of others.

The Making of a Mama Bear

As I pulled up my email account and began to type the address of my foster daughter’s teacher into the recipient bar yet again, my heart sank.

My palms began to sweat and my stomach twisted into a seasick knot.

“I can’t believe I am doing this again. If I keep raising concerns, this entire district is going to write me off as ‘that mom.’”

But as I closed me eyes and took a deep breath, my girl’s sweet face filled my mind, and I remembered the promise I had whispered to her so often: “I will always, always fight for you.”

When I became a foster parent to children with special/medical needs a few years ago, I knew it would change me.

I hoped and prayed that I–the woman who hated any kind of friction or confrontation–could learn to speak up and stand my ground.

I hoped someday to discover my growl and be worthy of wearing one of those “Mama Bear” graphic tees.

But instead of a cute mama bear who was capable of baring a tooth or two and nipping a bit, this enormous and shockingly fierce grizzly emerged from deep inside me. I am not who I once was.

The first time a child who had special needs came to live with us, I remember being in total shock at the rudeness and ignorance we were immediately encountering.

Soon after, we added another little one to our home who had more intense medical needs.

I was horrified and almost in denial of the terrible comments we heard, the heartless questions we were asked, and the appalling, arrogant, and biased medical care our child was offered.

Those first few months, I kept my mouth mostly shut because I wasn’t sure I could do anything differently.

Soon after, our girl landed in the hospital, and I watched doctors gamble with her life and professionals treat her like an inconvenience and something less than human.

I sat for weeks, holding a little girl who was dancing with death, while those who were supposed to be caring for her seemed as if they couldn’t care less.

It was in those dark days that I came face-to-face with the force of the mama bear inside me.

She roared, and she roared loud.

I would no longer sit on the sidelines while those around me disregarded the life of a precious child.

Whether the person at fault was a doctor, family member, or stranger at the grocery store, I would no longer allow the children in my care to be the ones sacrificed—at least not without mama bear baring teeth and claws on every side.

Since then, grizzly mama bear has become a part of who I am daily. I have battled school districts, the medical community, the legal system, strangers, and even family and friends.

My daily life is wrapped around six little people who fill my heart and home.

Because I am so closely connected with them, I can no longer view aspects of the world without their filters.

When comments are made, I interpret them as my child would and feel the need to correct terms used and questions asked.

When we enter a new environment, I am hyper-conscious of the stimulation my children encounter and have been known to ask people to quiet down or adjust lighting.

When a professional of any kind makes decisions based on anything other than the well-being and greatest protentional of my little one, I will call them out and demand change.

I do not take no for an answer when my grizzly mama gut tells me I should not.

I will not give up because I have a promise to keep.

Of course, standing up to others causes friction. I am not always liked.

Sadly enough, I have seen my need to protect my own push some who were once close to me far away.

People can be so afraid of doing or saying the wrong thing, and thus being corrected by me, that they find it easier to stay away.

I hate that. I struggle with being a people-pleaser, and I want people to like me.

I want people to know that I care abut them and to see kindness within me. But the journey I am on is teaching me that I can be kind and still be fierce.

I can see all people with value and still demand that my own be treated with worth.

I can be respectful and require respect.

I truly believe that my mama bear gut and growl are gifts God has given me to defend the cause of those who cannot always defend themselves.

There are days that I am not sure I am strong enough to be Mama Bear—and those are the days when God whispers to me: “I will always, always fight for you.”

Seeing Things in a New Light

Sometimes there are things in our life we would like to change, but cannot.

I guess then we have a choice: bang our head against a wall that will not move, or change how we respond to the wall.

I tried to keep this in mind recently when my son was ill for the fourth time this winter.

Despite medicine, multivitamins, good sleep and a healthy diet he has a weakened immune system and prone to respiratory infections.

I have railed, I have cried for him (and me); seeing him struggle and the consequences of numerous illnesses.

But it is our family’s reality and I don’t want it to emotionally wear us down anymore.

Giving myself more space and allowance to change my work so that I can care for him on the days he’s ill, we now try to make it a special day at home.

We enjoy snuggling on the sofa watching his favourite movie.

I get to catch up on some phone calls or housework rather than running around trying to complete all the other activities on my to do list, accepting that they will have to be done another day.

Realistically acknowledging what is possible with the time and resources we have.

All simple strategies that have meant I look at the situation in a slightly different light rather than getting frustrated, and upset, at something that is beyond our control.

Putting things into perspective

Having children can make us reassess what is important in life. This may be even more so when we have a disabled child.

I am much more aware of difference now, and the importance of inclusivity and justice.

It forces us to reconnect with our core values and meaning in life.

At times this may be at odds with society’s expectations; self-image, a wonderful career, managing everything with aplomb.  We realise what is really important to us; there is no point in sweating the small stuff.

Staying in touch with our values is an ongoing process but we get a sense when we’re not travelling the right path for us.

In the field of positive psychology there is an exercise where people find three good things that happened during their day.

This can help us to reconnect with the positives particularly at a time when the negatives seem overwhelming.

Change and acceptance

For some people, trying to change the way they approach things helps (i.e. looking at a difficult situation as a challenge rather than a threat), whereas others find this hard to do consistently.

An alternative is Acceptance and Commitment Therapy which involves developing greater awareness of what we are feeling, particularly at times of pain and distress.

Rather than trying to escape from the difficult feelings, it is about opening up and allowing them to ‘flow through’.

This doesn’t mean giving up or being defeated.

It comprises a stepping back – ‘I notice that  I’m having the thought that X’ – and observing negative thoughts as just thoughts rather than facts.

There are workbooks at http://thehappinesstrap.com/free-resources/ which can be helpful in realising what is important in our lives.

It is a work in progress as everyday life can be draining and the modern world can drag us down paths we don’t want to be on and pressures we don’t want to experience.

But for every new day I take a deep breath, try to see things in a new light, appreciate the little things, and feel a little bit more control enter back into my life.

I’m a SN Mum… and I’m Running On Empty

I’m rapidly heading for my 40th birthday, and I’m knackered. I look it too.

Every parent knows that bone-aching exhaustion that comes with having a newborn.

The seemingly endless night feeds, winding, comforting, settling back down to sleep only for the cycle to start again. But it won’t last for ever will it?

For some of us, it does.

For us there is no end in sight to the cycle of broken nights, nappy changes and night time feeds.

Our nights are punctuated by the beeping of feeding pumps (‘occlusion out of pump’ at midnight is not a joyous sight), SATs monitors, or if we’re on the wards, the sounds of the nurses quietly going about their rounds.

This winter has been one of the best we’re ever had – the Dude has been remarkably healthy and has avoided any hospital stays other than a few visits due to chestiness (a little thank you to his respiratory consultant for his remarkable vigilance and foresight here), but we’re still woken nightly by the gut wrenching sound – or rather lack of – of his breathing stopping as a seizure grips him.

It may only be for a moment or two, but it shakes us out of sleep in a second.

After almost 8 years, and approaching this Significant Birthday, I think I’ve used up all my reserves.

But then, just like all SN parents, I underestimate my own ability.

This mind-numbing tiredness is unique to parents/carers of SN children, unless you’ve lived our lives you can’t begin to imagine the depths of exhaustion it is possible to function at.

We’re not invulnerable however – our health suffers; relationships come under huge strain.

I don’t do New Years resolutions, but this year I’m making an exception of sorts and making a promise to myself to be kinder. Not only to myself but to others too.

We’re all human, in 2019 there will be no more trying to be Supermum.

But there will be more lego, more sparkle, more stories read and more time spent with those who matter.

Well, they do say life begins at 40, don’t they?!

Finding Out my Husband Isn’t a Superman!

Tim is Zachariah’s hero. He adores him.

Tim is my rock. I rely on him.

As Zachariah has gotten bigger, the logistics have had to change. We rely on our newly fitted hoisting to shower, change and put him to bed.

We rely on his sensory equipment and music  to soothe him rather than cuddling him and have had to become inventive in our ways of enjoying time with him without having to lift him.

It’s hard, we hate it. But reality is he is just too heavy to throw around.

Tim and I aren’t particularly built for lifting, but Tim has never let this stop him, well neither of us have, we break the rules and continue to pick Zachariah up for a cheeky cuddle.

Tim has never thought about it when he’s needed to lift him in emergency situations, or in non emergency circumstance to be fair, as the house isn’t 100% adapted, we do still have to lift, especially in our living room, as well, we live in there!

But we share this as best we can. However when I’m having a bad back day, Tim would always pick up my slack.

He never moaned. Never really thought too much into it to be honest.

He enjoyed his special Son time and loved a good cuddle.

This setup was recently taken away,

Last week, whilst Tim was at work, I received a text from him.. “I need to show you something tonight”.

Now without giving too much away, I saw this text as a good one.. Wink Wink.

What I did not expect was for Tim to come home and show me a lump!

A very sinister lump!

Keeping my practical head on, I told Tim not to panic, but to book a GP appointment first thing in the morning and get it seen to.

After a very long night and morning, Tim’s Dr gave us the information that we were shocked by, he had a Hernia. A Hernia from lifting Zachariah.

With the advice to prevent lifting Zachariah, and await the letter for a referral for surgery, we were left a bit shell shocked.

My image of Tim being some kind of superhuman had been shattered.

He had always been the one to just do it, just lift Zachariah. He had been the one who came home from work and just did what was needed.

With my back issues, and now Tims Hernia I feel sad that we are not strong enough for our son. I feel our bodies prevent us from giving Zachariah everything he needs.

Some may say this sounds dramatic, but a cuddle is everything to us with our boy, he cannot just walk up to us and wrap his arms around us, we need to lift him and position him on our laps for such a precious moments.

There is a need for us to create special moments with Zachariah.

There are so many other situations I could go into that will now need to be re thought out.

Such as lifting him out of his bed/wheelchair when he’s leaked, lifting him onto the mat for physio/ relaxation time, and putting him on the sofa for story time!

Reality is, hoisting doesn’t fix all lifting needs.

We have had a huge reality check over the past few weeks, as we realise in even more detail that our son has severe disabilities, and life isn’t going to get any easier.

Reality will be a little harder for a while, Tim needs to be cautious. Then he will need to take time out for surgery. It’s our time to look after him.

Now my title isn’t completely true, I may have told a little lie, as supermen don’t need to lift, they just need to love and care. They need to be there for their family.

This is Tim.

He is still and will always be our superman.

He loves us unconditionally.

He is selfless.

He will fix anything that needs fixing. He does all those annoying jobs that no one wants to do!

He works hard to support us financially.

He is our Superman!

Much love,

Rochelle

My Daily Miracle xx

What Valentine’s Day Is Really About

When Valentine’s Day comes around we are reminded it is time to focus on that special someone, it could be your children, partner, husband, friend..

As Valentine’s Day approaches, we sometimes forget what the holiday is really about thanks to the big markets out there for chocolates and cards and more.

It can be overwhelming, trying to decide what to get and who to get a box of chocolates or card for.

Yet Valentine’s Day should be a day when we slow down by sharing our love and appreciate all who are there for us.

Whether it is a friend, boyfriend, girlfriend, classmate, teacher, parent, husband, wife, or child–you don’t need to spend tons of money or buy a dozen roses to show that you appreciate what they do.

All it takes is a hug, a shared day together, a handmade card, a homemade meal, or a thoughtful favour done for someone.

One small gesture is all you need.

Showing people, you care is contagious and will continue to spread the love you’ve received.

Even better, you are showing your children how to show love, acceptance and helping those who we care about.

Rather than spending money on gifts and cards this year why don’t you make something?

Take some time out of your hectic lifestyle to do something for someone you love.

Perhaps you have a friend who doesn’t get a break, offer to babysit for a few hours while she gets some much-needed time alone.

Your partner has been really busy recently, make up a menu and cook a nice meal from scratch or maybe make up a poem or something, something unexpected!

Have a laugh together.

Maybe you’re usually too busy with everyday life to spend loads of time with your children, turn your phone off for the day and spend the time creating valentines’ crafts, cuddle on the couch with a film!

There’re so many ideas out there, spend time not money.

Show that special someone how much they really matter to you and share the love, I guarantee that it won’t only make them feel loved, it will make you feel so happy that you made someone you care about feel that way.

 

A Day to Pause for Us

Did you know that partner and spouses are not the most common recipient of a Valentine’s Day card?

I shouldn’t be surprised – I didn’t get one last year and I didn’t get round to getting one for my other half this year either.

I’ve been too busy.

I feel like I’ve not got an ounce of effort left in me at the moment because of the challenges I’m facing on behalf of my kids.

It’s just about all I talk about.  Except when I’m too stressed to talk about it and then I don’t talk about anything.

I can just about muster a few sentences on what’s for dinner and which programme shall we watch for half an hour before we need to go bed.

I don’t imagine this is anything usual in a family with additional needs kids.

In fact I know it’s not.  The statistics vary but I’ve read that 65% of couples raising a child with ADHD (one of the conditions one of our kids has) have experienced marital problems.

90% of parents with a child with learning difficulties say they don’t get to spend enough time together.

Sometimes it feels like life is a set of tasks to be delegated and split.

I don’t want to make my kids sound like a job or household chores but there’s plenty to do for them.

Only one of my three kids can reliably dress themselves without support – and that’s the youngest one.

Brushing David’s teeth can be a two-person task but in most other things we can spend a lot of time in the same house but not together.

Perhaps the one thing about Valentine’s Day is not the cards (obviously) but the way that it sparks the reminder.

The reminder that our marriage is about more than just parenting our kids.

The reminder that we chose each other before we chose children.

The reminder that we are people and not just parents… partners and not just parents.

And even if the day only brings that thought and I smile a bit more at my other half, it crosses our minds to choose something romantic to watch for that half hour together, or we take two minutes just to actually ‘together’, then that’s got to a good thing.

A simple pause to remember we are with who we chose to be with and that we still do.