Updated: Aug 27, 2020
What a year it’s been! In truth I feel like I’ve been put in a blender and blitzed but most importantly I feel blessed!
Oliver is one! Our journey has been difficult, we’ve never actually had the time to appreciate just how difficult. As with all children’s birthdays flashbacks occur of the time that’s passed, recently I’ve found myself thinking about our journey so far, how can it be that just a week after Joshua’s first birthday we were given the devastating, shocking news that he wouldn’t survive? I look at Oliver and I know how truly blessed we are for his health!
Deciding to expand our family after the passing of Joshua was a complicated decision, knowing that Mitochondrial Disorder (is thought to be the reason for Joshua’s passing) is a genetic condition. We also experienced a miscarriage before falling pregnant with Oliver, so it’s safe to safe that we were ecstatic but nervous during my pregnancy.
At 15 weeks pregnant we decided to gain a private, early gender scan, the sonographer didn’t understand why James and I both broke into indescribable emotion when she announced that we were expecting a boy! We struggled to gather ourselves to explain, we were overwhelmed with delight. Factors such as being able to keep Joshua’s clothes for his baby brother to wear, knowing that we wouldn’t have to overhaul Joshua’s room with ‘pink’, being able to reuse Joshua’s toys, meant that in some way we could have a ‘normal’ family tradition of passing on ‘hand me downs.’ It was a small comfort.
Oliver surprised us all with an early arrival, he was born at 33+3 weeks. I was panicked, terrified during my labour, what if...? After a more dramatic entrance than his sister and brother, Oliver was born, weighing 4lb 2oz and taken to the Neonatal Intensive Care Unit.
Doctors and consultants also needed to take into account Joshua’s passing and suspected diagnosis. We were asked many questions, we had no answers, we knew it was a ‘waiting game’ as to whether or not our beautiful Oliver would meet expected milestones.
We only spent a short time at Oldham Hospital #NICU as we participated in the ‘home tube feeding’ programme, meaning that we were able to take Oliver home after just two weeks. Being in hospital with Post Traumatic Stress Disorder #PTSD caused flashbacks of our many stays with Joshua to become more frequent, feeding Oliver via a #feedingtube initially was also a trigger. So, we were all the more thankful to be able to qualify for this new initiative and return home with the support and care of the #NHS nurses.
#Immunisations became a dilemma, usually we would not question whether or not to immunise our children, however Joshua’s immunisations we’re the trigger to his disorder, his body did not cope and he regressed swiftly after having had his vaccines. James and I both believe in the importance of vaccinations; this wasn’t of debate. However, we knew we’d cause any underlying issues to trigger if we were to allow Oliver to have them. It was an agonising dilemma, to protect Oliver, or to possibly trigger a life limiting disease. We spoke with many specialists; the advice was to immunise as normal but that of course it was our decision. We decided that we would immunise but that we would do so on an individual basis, extending the process, allowing Oliver’s body a better chance to cope with each. Our views were not shared by all, some lacked sympathy and understanding, at points we were belittled (I feel this was mostly due to the lack of knowledge some had with regards to mito) but thankfully most understood our primary need, to try to ensure that we could protect Oliver. It was a very upsetting and apprehensive process, which caused lots of #anxiety and tears but thankfully Oliver coped well with each immunisation.
Oliver was not a happy baby, prior to him being six-month-old he struggled with #collic and #reflux and barely stopped crying. So much so, that to help to calm any fears we took him to see our Consultant Paediatrician, who had supported us on ‘Joshua’s Journey’. Dr Levy viewed Oliver and was thrilled with his cognitive and physical abilities, this was another positive sign. Fortunately, Oliver became the happiest of babies from six month onwards and those days of endless crying stopped!
Oliver became unwell with bronchial symptoms just before #lockdown, we were sent to hospital with him from Urgent Care. This was an incredibly stressful period. Oliver’s first illness, would he recover as normal or would it cause regression and trigger a disease? Seeing him poorly was difficult, Joshua had bronchitis, and this had triggered #encephalopathy (brain damage), we were panicked but again we could only ‘wait and see.’ I was supported brilliantly by friends who are paediatric nurses and thankfully Oliver made a full recovery.
Oliver is most certainly his own character, he has a cheeky streak that his sister and Joshua didn’t have, he’s highly inquisitive, he’s got incredible determination (which also applies when told “No”) and he doesn’t shy at challenge whatsoever, I believe this is due to him being premature. But though he is his own person and very different in personality, he most certainly looks like his siblings! There are times when I’ve been ‘caught off guard’ by Oliver, taken aback by just how much he looks like Joshua. This has been particularly difficult recently whilst Oliver is the same size as Joshua (in his final months). Oliver has worn some of Joshua’s clothes, it’s been bitter-sweet to see him in his brother’s ‘hand me downs’.
Sophie’s grief has developed this year, she’s posed many questions such as ‘Will we get to keep Oliver?’ She’s had the most emotional episodes of crying, from the depths of her soul, with regards to missing Joshua. Watching her be a sister is a privilege, she has so much love to share, she cares for Oliver just as she cared for Joshua. Both brothers dote/doted on Sophie, Oliver barely takes his eyes off her, he’s her biggest fan!
Another milestone awaits us, this one being incredibly significant… Oliver is now one, he will always be Joshua’s baby brother, though soon, he will no longer be the ‘baby.’ Oliver will overtake Joshua in age, he’ll soon be older than his older brother! Is that even possible, such a strange concept!
This year has been nothing short of a whirlwind! Taking on the magnificent opportunity to build our own Jolly Josh centre was a dream come true but doing it whilst on maternity leave has been a huge challenge. We rarely went to any social baby groups, the classes that we did start were in between phone calls and emails. Oliver has had lots of screen time, having been faced with my laptop and phone more than I’d have liked. So much so that I decided to extend my maternity leave so that we could attempt to do more together, just one week later all our classes stopped, and the nation went into lockdown! Maternity leave has definitely been a different experience this time round but amongst the busy ‘working’ (voluntary) days and evenings we’ve enjoyed many fun times and I very much look forward to enjoying those family adventures all the more!
Our children are our proudest achievements, Oliver is thriving, and we are truly blessed to be able to watch him grow and develop, he is an incredibly special little boy and is loved so very much!
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