Despite the threat of elves taking umbrage with early festivities, it was tempting to put our decorations up before Xavier’s December 1st admission just in case. Last year we got them up but it was a close call so would leaving them down be tempting fate or putting them up? Alas we held off untik mid December abd despite a few threats – a nasty cold pre Christmas and a General Anaesthetic for an MRI on Dec 23rd, we’ve made it 2/2 on home for Christmas (unlike his birthday spent on Ward 9!).
Despite our fortunate run (especially after bring discharged following broncholitis on Dec 23rd last year) there is always a slight fear. A browse down my Facebook saw far too many parents spending Christmas in hospital, or dealing with the loss of their baby – the pain is unimaginable and yet often an intrusive voice tries to make me imagine, tells me that we might not escape his inotial prognosis.
MRI day I took presents into our ward and down to PICU, a small token of chocolates for our staff teams and books for parents – it felt OK to be on the ward, knowing we shouldn’t be back for more than socialising but the sight of a tiny neonate being wheeled in PICU nearly broke my heart – I hope whoever she is she’s doing well and is back in her parents arms soon. The memory hasn’t faded very far from my heart, and try though I might, that initial sight of him is often in my mindseye. The sight of a poorly child with a huge battle ahead will always be upsetting but I hope in time the flood of emotion will come to feel less overwhelming.
There’s no rule book fo bring the parent of a complex or fragile child, and I’m not sure the pain ever really eases. I don’t know if intrusive thoughts are part of dealing with everything or something I should stop, but the shadow of what might have been is especially sharp at this time of year.
In better news, my nephew was born in plenty of time for Santa to get his Christmas list sorted this year, but his thankfully very brief extra care brought back all the old panic. On the surface at least, my sister was incredibly strong – far more so than my gibbering wreck when Xavier arrived, and has coped admirably with his welcome to the world but it’s so unfair for any of us to go through that pain, regardless of the length of the journey.
Its not just the sad things that bring it back though. It makes sense that a poorly baby would make me sad, but there’s the happy things that we missed that can also bring back that sense of loss. I got to feed the aforementioned gorgeous nephew today, but it was bittersweet. Not only did I not get to do that with Xavier at that age, not only did I not get to do that for very long with him (he was part bottle fed, part NG fed from the age of 2 – 8 months) but he’s also still not eating or drinking. He’s not taken a drink since 10 months and the eating ebbs and flows, never really building up to much and then surgery or colds knocking him back again. I loved feeding my nephew (and generally hogging him for as long as I could) but it does leave an ache, and then a sense of guilt for not being grateful about how lucky we actually are to even have him.
Father Christmas visited both boys on their homes and as far as Xavier toy haul is concerned, we’ve been lucky and blessed with kindness and generosity from our friends and family, to the point of it taking three attempts to get through his gifts! He’s touched so many peoples lives with his strength and courage. Thats what i hold on to on the hours of sleeplessness, waitog for hom to eake up crying, brain working overtime. He’s already made a difference to the world, just by being in it. There will hopefully be medical proffesionals who will have a broader perspective of children with a similar genetic diagnosis because of him, their will be parents who see that hope is not lost just because it is fragile and hard won.
His eating was less successful than his aquisition of enough toys to rival Smyths, and he slept through all of Christmas lunch and wasn’t overly interested in much else, apart from his Daddy’s pickled onion (what sort of weird child licks pickled onions?) and dummy – dips in the chilli! His taste is nothing if not eclectic. Still, we see him trying, a constant battle it sometimes seems, but he has real pleasure in the social side of meal times (and my cutlery) and he’s already overcome so much.
How can we ever give up when he simply doesn’t understand how to? Each day is a new day, a mantra I really need to focus on for next year.
We’ve been fortunate to have the Christmas period right through to New Year together, whilst so many work hard through to keep us safe and protected (and to keep the bargain hunters saited!) and I know how much Xavier loves having both of us here. I rather feel for him in January when he’s stuck just with Momma and my singing. Actually, no sympathy for my singing – he keeps doing (our interpretation of) the hand actions for wind the bobbin up so I’ll sing it, so he obviously loves my tuneful renditions of his favorite songs. I feel sorry for everyone else on the bus though… In a dew days though, with Tony back at work, we’ll be back to our old habits and routines.
January bring with it the need to find him some new buddies (we’re keeping the existing ones too!!) and find some play groups for him. Every time we tried this year something went wrong and so in reality I’ve rarely tried and consequently he’s not too keen on people. I see him battle between wanting to go over to other children and not being able to and it hurts my heart. We both need to be braver!
Given the way he wiggles when the music is on, I think it needs to be a dance class. Baby yoga would suit me but no way will he be calm and soothed unless it’s by small potatoes or Mr Tumble! so something will lots of noise and thongs to bang and he’ll be sorted – especially now he’s walking by himself. Really proof of how much he’s gone through, this is the third attempt.
On the downside, new groups mean new germs and questions and looks and comments… I’d like to thing my friends know he’s not a poor baby but I know when we meet new people there will always be those asking what’s wrong with him. It just makes me want to hide him away and not bother, but I know it will be good for him to socialise, especially if he’s ever going to manage nursery and school. Now there’s a scary thought!! And perhaps good for me too…
Overall, it’s so far been a good festive period (and it’s my birthday!) and its been lovely to spend time together as a family outside of a hospital cot, and to see people not paid to be nice to me. We always adjust back quickly to our family routine (although Xavier’s sleep is taking longer to regain!) and there’s always the threat hanging over us, but it’s felt like we can breathe a bit more this week.
2017 will hopefully be a year of consultant appointments, check ups and follow ups but no admissions. It will hopefully see Xavier eating more (as opposed to licking something once then feeding me – bonus today as it was biscuits and sweets!) and dare I even say it – drinking?? 2017 is quite long, there’s time enough for such leaps!
I have no doubt that he’ll be properly on his feet next year, and I’ll be running after him with an o2 cylinder. Hopefully he’ll be running around with his little friends, not away from them. His cousins will be increasingly mobile too so they can cause chaos together. 2017 will also hopefully be a better year for our family and friends who have their own battles to fight.
2016 was principally great for the additional of my niece and nephew, but otherwise a bit hard work and stressful. Here’s to 2017 being the year we all deserve.