Been a wee while since I made a post on here however I have been posting pics on Thomas’ facebook page so be sure to like the community page ‘Minding Thomas’ to keep in touch. Just hit the ‘like’ button on the right hand side of this blog. ->
I recently posted a link on his facebook page for a piece I wrote on the fabulous Firefly Garden website. World Prematurity Day was on the 17th of November and the piece I wrote was all about our story of having a preemie bub. It was a particularly difficult piece to write because it is where our journey began. Link is below.
http://community.fireflyfriends.com/blog/article/prematurity-our-story
Thomas’ 1st birthday is nearing and it’s not an easy time for me because I’ve found myself reflecting back on the year we’ve had and to sum up, it’s been a really tough year. There was no guide book for us to refer to and no plunket nurse or doctor who could tell us what to expect and how to deal with it. It took a long time to start to meet other parents who we could connect with. The 5 stages of grief did not apply to our situation because the grief cycle is of an ongoing nature. I had so many romantic ideals about what my first child would be achieving by their first birthday and it’s hard some days to avoid those sneaky little thoughts creeping in. They are always lurking there either spoken or unspoken. They’re not always the same milestone thoughts like I wonder what he would look like walking or sitting. Maybe him independently eating food from his hands or getting his hands to his mouth. Joe and I were questioning the other day whether he has a sense of smell. How would you tell with a child with Thomas’ complex needs? All I know is that he has sustained severe damage to the part of the brain responsible for processing a range of sensory information. We know for sure that Thomas has blimey sensitive hearing though. No sneezing allowed in our house without the consequence of a melt down of tears from our boy!
I am of course thankful that Thomas is alive and if he’s having a settled day I’m chirpy as but for the first year of his life most days have been filled with a range of unpleasant emotions. When I first started blogging Thomas was about 7 months old and had totaled 5 hospital admissions not including 7 weeks in NICU. Since then, Thomas has remained stable with no recurrent infantile spasms. Every week, we have therapy, play group and some other kind of medical appointment.
He has a large team that includes: a Pediatric Neurologist, Pediatrician, GP, VNT (Visiting Neurological Therapist), SLT (Speech Language Therapist), Dietitian, Conductor, RTV (Resource Teacher of Vision), ophthalmologist, Home Care for Kids nurse, dermatologist, respite carer, BLENNZ teachers, referral awaiting for Orthopedics. Parent support groups or associations that have been vital include PVI (Parents of Vision Impaired), BLENNZ, and most recently, The Cerebral Palsy Society. There are many facebook groups which I find a comfort. I spend a sizable chunk of my time on the web reading loads of different blogs, specifically special needs focused.
When I reflect on the (almost!) year we’ve had as first time parents, I have learnt a lot about my own strengths. I can’t really process how I have coped. Some days not at all! But I do know that with this journey we’re on I have just got on with it. Joe and I are a great team. We are similar in that we both go with the flow. We have learnt that this is our way of getting through particularly difficult times. Humour has been an important release and distraction as well as food. Gotta enjoy something right. Can’t go out clothes shopping or to the movies so food is a simple pleasure. Family has and continues to be a huge support. I am not the sort to ask for help or things but I have learnt that it is okay to ask for help. I used to think that it was greedy or a sign of weakness but I understand the strength it takes to admit you need support. Both of our families, including extended members have been supportive in so many ways. I am so thankful for the support. This is starting to feel like an acceptance speech I realise (see, some humour!). And the oscar goes to…
Thomas – what an amazing little guy. So incredibly hard as a parent to watch your first (or any) child fight for their life within their first week or so of life. The challenges he faces everyday and yet he will always manage a smile (disregard the steroid treatment of course!) I have learnt that life is all about the little big things. Just things like a smile, a coo, a giggle. The power of interaction through touch. An embrace, a kiss, a cuddle. My son responding to and recognising my voice. It’s all about interaction whether with ourselves, other people or our everyday environment. This year has been all about Thomas learning how to interact with his environment. He has needed ample time to adjust (still is) and make sense of his world.
Quite a few people often ask us if Thomas is getting better or “he’s going to be okay right?”. Thomas is okay as he is. This is his normal. I often forget that we are so caught up in our world with Thomas and how seizures, medication, therapy and regular medical appointments are our normal now. I forget sometimes how this may appear to others when I casually speak about his challenges. When he had just had his brain bleed I spent the first few months in denial, thinking that he would get better or heal. I made a lot of excuses like he’s premature and this will slow his development down a bit but now that I understand the conditions that Thomas has I know that it does not define who he is but it does define the type of challenges and therefore support he needs. Some articles I’ve read have said, ‘why do we have to label?’ – well I believe that the ‘said label’ does help the parent, friend, family member understand the person’s individual needs at the time.
Moving onto the subject of ‘labels’ – Thomas recently received the written diagnosis of cerebral palsy. I’ve always known that he has cerebral palsy but some (not all!) medical professionals are very careful with delivering the cerebral palsy diagnosis just in case it’s a ‘developmental delay’. The reason I always knew he had it is the same reason I knew he had CVI or infantile spasms before he was diagnosed.
Simply, a parent knows their child best.
Oh, and lots and lots of research!
Thomas about 6 months old.
Minding Thomas 