These past couple of months have been a whirlwind. Oliver has barely managed a week without appointments, I haven’t had time to blog (brace yourselves, it’s a long one);  juggling work and trying to stay on top of all his paperwork has been a struggle.

IMG_2611Home Suction being sorted (finally) has made a massive difference. Receiving this equipment has been such a weight off of our shoulders. It means that when Oliver can’t manage his oral secretions or does fall ill we have been able to intervene a bit at home and stop him from aspirating. It’s not a miraculous cure and I’m under no illusion that we may have to have a hospital visit soon, but I’m trying to be more of a ‘glass half full’ person … I know, I know, we’ll see how long it lasts. 

After taking some getting used to, Oliver’s glasses are having such a positive impact on his development. Despite him not being a major fan of them and looking slightly like an alien, he is far more responsive, vocal and does seem to be taking more of an interest in things so that’s a win!

 

oli playing

His new chair finally got delivered the other week which he LOVES. If I’m honest, I think he may love it more than me and Craig. Seeing him happy and playing (smashing everything he can get his hands on) independently is priceless … even if it does involve him manoeuvring every toy he possibly can into his mouth and then lobbing it any in direction. His co-ordination isn’t the best but that’s fine – there’s no rush and I’m confident that he will learn.

My inner cynic can’t help but feel slightly annoyed that it took 20 months for him to be able to have a chair that he can use as a high chair and wonder what his development might be like if he had been able to have it sooner, but hey. 

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It is so nice that there are aspects of Oliver that we can finally see developing and progressing. Nevertheless, it is becoming more apparent that he has good and bad days with a vast contrast between the two.  His absence seizures are still prominent and there are days where he really isn’t with it,  in his own world entirely, glazed over and not really responsive.  Some days he doesn’t want contact, some days all he wants is to be held. Other times he won’t eat and gag before a spoon or bottle teat has even touched his lips, or he’s a little piggy and can’t down his bottle quick enough.

Most recently, It’s like a switch has been flicked and he’s loving life! Many months have been spent willing and persevering with him to take an interest in things, at times unsure if our efforts made were in vain. He seems to have developed so rapidly recently, almost overnight. We can’t quite believe the positive change we’re seeing in him and it’s the most cherished, overwhelming, rewarding feeling. We are seeing him deliberately happy, enjoying his food, making different noises.  He’s been extremely hit and miss with his solids and swallowing but recently has been tolerating different textures and food. This progression has given us hope that a feeding tube may not be an inevitable future prospect.

We’re starting to feel hopeful for the first time in a long time.  I’m unsure if this is embracing the half full glass or delusional, but I’m sure time will tell.

IMG_5524Craig and I have been off work this week too which has made a huge difference. Family time is the best time. Even just all of us taking the time to watch a film and be silly together. It’s the simple moments that are treasured.

We took Oliver to the zoo yesterday and the weather was great which lifted everyone’s mood. Oliver wasn’t the happiest sausage and slept the majority of the way around, intermittently stirring from his slumber to give us a death stare, but it’s making memories that counts.

Oliver had a skin & muscle biopsy back in March. After we felt confident his wound had healed and the weather brightened up a bit we took him back to his favourite place – the swimming pool.  It was the most wonderful time and it was as if he had never been away! He tolerated a whole 45 minutes kicking and splashing around, looking at the sensory lights and laying there like a King whilst we showered him with the watering can every now and then.  If I’m ever fortunate enough to win the lottery the first thing I’m buying is a Hydrotherapy pool!

I’m trying to forget about the medical side of things for the time being and just enjoy the time we’re having together. His most recent MRI results weren’t what we were hoping for (I’ll go into this another time) but we’re learning to focus on him and his abilities rather than what a scan is telling us.  We’ll hopefully get his skin & muscle biopsy results in a couple of months too and know more about everything then … hopefully.

 

oli swimming

There are so many possibilities with Oliver and his conditions, in all honesty we are struggling to keep up.  So, we’re trying to be positive and remember that any outcome, positive or negative is exactly that … a possibility.  It’s not definite nor confirmed, it’s something that may or may not happen.  If you’re reading this and can relate in any way, it is taking a long time but we are slowly learning to have hope.

On the bad days it’s hard, especially when all you can recall from recent months are hospital admissions, appointments, feeding struggles and a miserable child who you can’t console or communicate with how you wish to. But just that one day, one hour even, of happiness or the slightest miniscule development in their behaviour can turn your world upside down in the best way.  Oliver is generally a happy child, ecstatic almost,. but when he’s feeling under the weather we sure do know about it and it’s important to stay positive and hopeful particularly during those times.

Hope makes anything possible. 

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Recently, I have been reminiscing about how my life has changed since becoming a mother. Upon reflection, I look
like a zombie most days and fashion the ‘bedraggled’ look far too often. I have approximately zero time to myself. The time I do have to myself is spent slumped on the sofa procrastinating when I should be doing other things. I have probably had about ten nights in the past year where Oliver has slept through, even then I wake up to check he’s okay. I may as well be nocturnal.  I’ve gained four stone through comfort eating alone, my maternity wear fits better now than it did when I was nine months pregnant. I am a mammoth. Oh the shame.

Although, most importantly, I have found myself bewildered with the amount that I have learned from Oliver. How can such a tiny human bring so much knowledge into the world without any intention nor care for it?  It’s
only been just over a year and I have learned more from him than he will ever know.

It is truly astounding the impact a little one has on not only ourselves, but those around us and our daily lives.  He has taught me so much that I didn’t even know there was to be learned.

He has shown me happiness, true unequivocal happiness.  He has inspired me with his courage, strength and determination.  He is fearless. I am forever in awe of him.

He has taught me to look for the slightest positive of a terrible situation and to cling to it. To remember that no matter how bad things get, they could always be worse. He has taught me to keep going, when I want nothing
more than to so desperately give up.

Above all, he has taught me to be thankful; regardless of circumstance.

Having a child with special needs means I definitely appreciate the little things. So many simple routines or actions escalated into major tasks for Oliver.

For example, it took Oliver until he was 11 months old to be able to firstly hold a small teether without dropping it, secondly make the link to put it to his mouth and thirdly, to actually use it and not lose his grip.

‘Using a teether’ is such a simple action and generally one of impulse, yet for Oliver it was broken down into different steps and mastering each step was a milestone within itself.

When your child has special needs you analyse absolutely everything.

Everything.

My mind never stops worrying or wondering whether Oliver will ever be able acquire certain abilities.  The ‘will he, won’t he?’ questions are an endless cycle of exhausting thoughts. If he will, when will he? How will he? Can I be doing more? Should I be doing more? What if he doesn’t? What do I do?

I have never felt a more intense sense of relief than when Oliver began to show an interest in toys and actually attempt to interact with them.  It could well have been a day that never came (for some families the sad reality is that it may not), but I am beyond thankful, grateful and blessed that it did.

So, when my mind decides to worry about all of the things that I have no control over, I try to remember all of the wonderful things that I am thankful for and not to dwell on the ‘what ifs and maybes’.

I have an amazing family, a roof over my head, a loving, supportive fiancé to come home to.  I have clean water to drink, clothes to wear and I don’t ever have to worry about where my next meal is coming from. I can see, I can hear,
I can taste and I can smell. I can walk, I can run (well, attempt to) and I can communicate.  I am fortunate to have people to call on when needed and for them to be there.

These are all abilities and things that I often take for granted, yet they are crucial to my wellbeing and happiness. Not to mention Oliver being entirely dependent upon them.

Quite often it’s the ‘little things’ or small gestures from others that put a smile on our face. Somebody asking how your day was, somebody holding a door open for you or making you a drink.  They can appear insignificant at the time, potentially not even acknowledged some days. They rarely enter our considerations as our minds are forever whirring elsewhere or we are too preoccupied with other tasks.

Since becoming a mother, I have become far more aware of the world around me.  Far more aware of all the things that I can do and that others do for me which I sometimes don’t give a second thought for.

If this past year has taught me anything, it is not to take anything for granted. Whether it be health, happiness, the big or the simple, little things. To reflect and to be thankful regardless of what mood I may be in or day I may have had.

Every smile, every frown, every laugh, every tear, every sound, every sleepless night, every feeding battle, every lingering touch is to be treasured.