Learning to parent all over again

When we first learned that Thomas had a brain injury that was very likely to result in cerebral palsy the advice given to us was that it was too early to say how this may present and to simply take him home and treat him like a normal baby. In many ways this advice makes sense – his physical needs were the same and mostly could be met in the same way as any other baby. It also made sense to bring him home and give him the same opportunities to explore, to grow, to be loved and enjoyed and to assume that he WILL reach milestones and to celebrate those as any normal parent would.

But I am now learning that this advice hardly skims the surface and that it is not appropriate nor practical in helping me raise my baby. Let me explain…

With my first child, I took her home and did everything that new mums do. I fed her and cuddled her, rocked her to sleep in the wee hours of the morning. I took her out to mother’s groups and playdates and lamented over sleepless nights and poo explosions and discussed all the usual topics like when to start solids, the benefits and drawbacks of dummies and how to keep sane on the difficult days. I never really felt alone and as hard as it was to adjust to the new life of a mum, in many ways it just happened and parenting began to feel natural and make sense. As for Charlotte’s development, she grew and learned new skills with minimal input from me. I don’t mean I didn’t encourage skills and play with her, simply that I never had to consider HOW to teach to do something. She was naturally inquisitive as babies are and her body let her move and interact with the world around her. I remember the first time she rolled off her back I was laying in bed with her about to give her a breastfeed and as I unclipped my bra she was so eager to feed she just rolled towards me. She was 4 months old. Similarly one of her first solid foods was a pistachio macaroon, because she was sitting on the lap of my aunty at a coffee shop and in the blink of an eye she grabbed the macaroon and put it in her mouth. I never had to facilitate these things, all I had to do was include her in my daily life and she mimicked me. This is how parenting a “normal” baby is – you simply provide them with a healthy environment and they learn.

This time I find myself in a different place. It is not enough to just include Thomas in day to day life. I believe his mind is switched on and that he still has that natural curiosity and interest in his environment, however his body does not know how to interact with it. And this is where the advice of treating him like a normal baby fails. In the last few weeks since starting therapy I am learning that if Thomas is to reach milestones I need to actively facilitate this with therapeutic play. I need to adapt his environment to give him tasks that he can achieve to keep him motivated but at the same time challenge him to extend on what he can already do. I suppose mother’s do this anyway, when Charlotte completes a 20pce puzzle with ease, I buy her a more difficult one. When a baby is learning to walk you position yourself just that little bit further away. But this is different, I have to break down the tasks into micro segments and teach Thomas how to use his body. To do that, I need to learn how his body should work and observe how it currently works and think “how can I get him from A to B?”

He is 4 months old corrected age (meaning he is 4 months past his due date and therefore in terms of development should be doing what a 4 month old baby does) but at the moment he is probably more on par with a 2-3 month old baby. He needs full support to sit and his head is still floppy. So we need to help him improve his core strength by limiting the support we give him. Every nappy change, cuddle and carrying hold is an opportunity to encourage core strength development. I don’t just pick him up anymore, I think “how can I pick him up in a way that causes him to activate his neck muscles.” The other big task we are working on is hand movements. Currently his hands are often clenched shut and he has not had the light bulb moment of realising what his hands are for. I cannot just put toys in front of him and expect him to pick them up and play, I need to encourage him to open his hands. When he can do that, the next step is to place a toy in his open hand and for him to learn to hold it. When he can do that, he needs to learn to bring that object to his mouth or in front of his eyes and when that becomes easy he needs to learn how to independently reach for that object and then interact with it. You see this one task that the average baby just does is actually a very complex process that needs to be broken down into very small and gradual steps. And this is why I say I feel like I’m learning to parent all over again!

I find raising Thomas to be quite isolating. I don’t want to attend playgroups with him and answer questions about why he is so small or why he is not doing the things that other babies do. I don’t want to leave my house and go to an environment that is not set up in a way that maximises his opportunities to learn. When other mums talk about starting solids or using dummies and picking a daycare centre, my concerns are of getting to hospital appointments and wondering what the best type of supported seat is to allow Thomas to enjoy the world in an upright position. IF Thomas ever takes his first steps I will not write a facebook status like “OH NO he is walking… now I am in trouble!” – instead I will probably post a video with tears of joy streaming down my face as I watch him achieve something that I never believed possible. I am not the blissfully ignorant new mum I once was, I am a mother of a child who needs so much more than to be treated like a normal baby.

6 months! Can you believe it!

Next week my little boy will celebrate his “6 month birthday.” Has it really been 6 months since that February morning when at 6:34am he was born, 9 weeks too soon? As they say time flies when you’re having fun. But it hasn’t always been fun, as my regular readers would know. It has been a blessing though.

Wait, did I just say blessing? Yes, I did. But I don’t always see the blessings and I constantly have to remind myself that my son Thomas, despite the challenges thus far and those we’re yet to face IS a blessing. His big cheesy smile and his bubbly laugh, the way his whole body gets excited when I speak to him, the way he coos at his sister, the fact that every time his Daddy says “happy” he laughs, as though he might just already know what that word means… it’s all a reminder that he is a blessing who many nights as I sat in hospital alone dared not think I may never experience.

This has also been the most challenging and gut wrenching year of my life and one that has brought a lot of painful “life lessons.” I turned 25 last month and we “celebrated” our 5th wedding anniversary this year too. A year that should have been full of celebrations as we met two big life milestones and welcomed a new baby was overshadowed by the raw and relentless pain of being stuck in limbo as we await the outcome of ours sons damaged brain. The pain of going to a routine pediatric review and being told that there are some concerns with his growth and development. The pain of hearing a physio describe his development as “below average” and the pain of hearing the words uttered “early indicators of cerebral palsy.” Instead of planning a big 25th party or looking forward to a romantic dinner for our anniversary like normal 25yr olds, we plan hospital trips and “look forward” to starting therapy. When our peers are buying homes or traveling, we are “holding off” until we know what our sons “needs” will be. When I go out with my baby and people stop to admire my beautiful “newborn” I feel a deep sadness – they see a tiny baby who could easily pass for a 6 week old, they do not know that I wish for my baby to grow bigger and stronger.

But in amongst the pain there is some beauty. I have been blessed to have been embraced by mother’s of children with disabilities. In their daily battle to get the best for their kids, to care for them when caring means more than putting dinner on the table and helping them with homework, shuffling to and from various appointments and therapy sessions, they still find the time to console me and educate me and help me see that our future may be different to what I had ever hoped or dreamed for, but it won’t be as awful as I anticipate it to be. There is beauty in learning how to see the positives in life and I mean really see the positives in life. Many of us say we are positive people, but until you are thrown into the trenches with no light in sight, can you really be sure of your positivity? There are many times that I lay down in my trench and shut my eyes, scared to look for a light that may be absent, though I find as time goes on my heart has the strength to search for light, for happiness, for blessings. I think this may be what healing feels like.