On not being in the bubble

By 21st March 2017 No Comments

Since we’ve been home we haven’t really left the flat. Not really. Small walks around the park, trips to the tiny corner supermarket.

Mostly we’ve hunkered in, part of it was trying to find our routine and a sense of normality. Trying to reclaim a sense of us after two months in hospital and hospice.

Part of it is fear. I’m very very aware of what it’s like to be outside the safety of the hospice. The looks at Kai’s NG tube and the look away, with side eyes after (just look for goodness sake. Acknowledge him and all his tubey glory. Look and smile like you would any other baby with ridiculously chubby cheeks).

There are a kajillion Mums and babies out during the day. Mostly I smile and my gaze kind of washes over them, I don’t look too closely. I don’t want to compare my baby with theirs, I don’t want to investigate how my little guy is doing developmentally. I know he’s behind. I know he’s not holding up his head or putting his fingers in his mouth, but what he is doing is more than enough. I’m so attuned to Kai as he is, I’m scared to know what typical development looks like.

It’s the fear, I know. We’ve spent so long dealing with the intellectual side of Kai’s disorder, and getting on with everything that we haven’t really dealt with the emotional side. To be honest, we went into hospice on end of life care, so that we managed to make it home again was joyous enough. I didn’t know this was a thing I needed to deal with. Not until small typically developing babies were everywhere.

In the end it happened at the pub. Our very first pub lunch with Kai and Sam’s folks. Friends of ours from NCT stopped to say hey, and how pleased they were to see us out of hospice. I was so so glad to see them, but was completely unprepared for how my emotions dropped out when I greeted their gorgeous little girl. She’s beautiful, hey. The most beautiful amazing little child you ever did see.

The difference developmentally between her and Kai was like night and day. She was born a week before Kai and oh my days. She’s so present and alert. Able to focus and hold a gaze, to recognise a face and smile in response, so social. Her movements smooth, and arms crossing her midline in delight.

I smiled and held it together, because grief is a private thing and I try not to process in public. Besides, despite the emotional turmoil that I was experiencing knowing just how developmentally delayed my guy is, she truly was beautiful and amazing. I was so pleased for our NCT friends (and I say that genuinely). They seemed well, and happy.

We said our goodbyes, and it wasn’t until Kai needed a nappy change that I cried it out in the privacy of the bathroom.

Every day I grieve the alternative to NKH. Everyday  I grieve what it might have been like, the future Kai might have had, the future our family might have had. I love Kai and Sam more than anything, and it’s hard to let go of the what ifs. The alternate reality without NKH.

I often remind myself that one what if was that Kai could have died and we’re so lucky to have him with us. But still, I would be remiss if I didn’t acknowledge the extreme sadness I have that we don’t walk the typical path. I think this is something all special needs parents go through, right? This is the still longing for Italy, when you’re bang smack in the middle of Holland. I mean, Holland is nice and all but it’s not Italy. No offence, Holland.

Sigh. I do my best to acknowledge the craziness of this whole situation, and then we move forward. Nappy, feed, meds. Another day down. We’ll get through.


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