I keep waiting for this to get better or easier or something that feels normal. Rowan might be improving developmentally, but trying to juggle all of his care providers, therapists, actual medical balance, and daily care requirements hasn’t become anything close to easier.
I’ve come to finally truly begin to understand that this is a permanent change in my life. I will always be the one who is his primary caregiver who needs to always be on top of everything. I will always be the one going to 3 appointments a week or managing new nurses and scheduling therapists. I will always be tracking diet and weight and medicines for Rowan…and he isn’t my only child.
My life as it was before Rowan is truly gone. The only way it will be “normal” again is if everything goes horribly wrong and I lose him. Not worth normal. Not even a little bit.
When I had Evelyn (I was 23) I was determined to not allow “mothering” to become all I was. I love working. I love doing things. I wanted to continue doing that and just bring Evelyn around – adapt here and there of course – but still stick to “me.” And we did. We went camping in the Rockies last summer, my 18 month and I (20 weeks pregnant). We create. We learn. We spend time outdoors and on walks and we enrich our lives.
With Rowan, I don’t know how to do that yet. I haven’t figured out how to be me. Maybe I’ll get there one day – but right now – the old me..the old me can’t be a good mom to Rowan. The new me isn’t as good of one to Evelyn. I’m trying to hold out hope that I can make it through the next few years without totally screwing up my children. Or myself.
But “normal” won’t exist for a long time. We’re stuck with change – and for once, I’m having trouble adapting.