I really hoped that I had managed to get around to blogging before now but in all honesty we’ve been too busy staying out of hospital and enjoying quality family time at home! I know, I can’t quite believe it either …Oli southampton.png

This summer has been so lovely and Oliver has been as good as gold. We’ve had frequent routine appointments but other than that we’ve spent our days either in the hot tub, playing or getting out and about. It’s been the first prolonged period of good health and progression with Oliver since he was born and we’ve not taken one moment for granted.

He’s turned into a little piglet and is now eating ‘proper food’- blended mash/veg/chicken daily and gobbling it up. Of course, there is still the odd cough/splutter but he’s actively chewing and moving food around his mouth which he just didn’t do for so long.

His swallow assessment lady (I know, ever technical with correct professional terms) has agreed to hold off on a video fluoroscopy for the time being too – woohoo! I’m definitely feeling hopeful. We now just have to get him to master drinking from a sippy cup as opposed to a bottle; fingers crossed it just clicks one day.

The standing frame has essentially been made redundant at the moment. He’s still in it occasionally but he isn’t so keen on his piedro boots. The standing frame was great but in a sense it’s quite restrictive; he gets quite bored and frustrated now because he just wants to be moving. Also, it requires far more effort from him to play in there as opposed to his chair so there’s probably a sneaky element of laziness there too.  oli eating

 

oli playing 2

Despite Oliver not being able to sit/stand/support himself I’ve often wondered whether if he was supported and the option for him to move his legs was there whether he might give it a whirl.  So, we spoke to his physiotherapist about a walker instead of the standing frame to see if it might encourage him.  She agreed and we’ve got an appointment at the beginning of October to go and see what one will be most suited to his needs. So excited – rock n’ roll lifestyle right here lads.

Medically we’re still in the same boat really. We had one abnormal result from his skin/muscle biopsy which has been referred to a mitochondrial team for further testing and analysis. Again, we’ve been given no definitive timescales nor information on what we can expect to come from it or what it may mean for Oliver’s prognosis. Shock, it’s another waiting game. He has a neurologist appointment in the near future so hopefully we may get some form of an answer or at least a plan going forward then.

 

hot tub olby

I won’t lie, despite our circumstance not essentially changing it still affects us when we receive news of any sort. I suppose we don’t know its significance or relevance yet, but it’s still ‘something’ for us to take on board and work into our considerations.

It resurfaces those horrible feelings of uncertainty and anxiety surrounding the unknown. It brings back those moments where the ‘what if/but’ questions endlessly intrude our minds. Although, we’re slowly developing and realising how important it is to allow ourselves the time to have those moments, those moments where we ‘lose it’ for a little while and then rationalise the situation and remember that still, we have no diagnosis, and that still, we don’t really know a great deal about Oliver’s illnesses. And, of course, to just take one look at him and see how well he has been doing and how happy he has been recently. God love him!

oli swing

Other than Oliver’s recent happenings, not a great deal has been going on. We’ve just been enjoying settling into our new home and getting back on the wedding planning train. What we had booked we ended up cancelling as it was just too much pressure and there was no way Oliver would’ve been comfortable. It was booked long before we had any idea of the extent of Oliver’s conditions and in hindsight pushing it back was wishful thinking.

So, we bit the bullet and cancelled. Initially, it was a weight off with everything else going on but then it sank in and we realised how much we do want to get married.  So, here we go again. It’s going to be very intimate, small and in our back garden with our nearest and dearest. Oliver has all of his creature comforts (ok, mainly the swing) and sharing our day with the people who have been there for us throughout everything is all we need.

Bring on the good times! (pretty please)

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.