When we were in the Neonatal Intensive Care Unit (NICU) I thought leaving was the end goal. I didn’t even consider nor expect for our journey with the health system to continue once the girls had been discharged. When I’d lie in NICU, doing skin to skin and cuddling my sweet twins I’d wistfully imagine what our home time would be like. The reality was pretty far from what I had envisioned due to Little Red needing regular medical attention.
Their first twelve months were very busy, with sometimes fortnightly appointments here, there and everywhere. At the time I tried to reason that it was only doing a few things, but looking back I now realise what a mammoth task it all was. Calling, booking and managing the whole thing was a job within itself. Not to mention Copperhead would often be in attendance too or we had to tee it up so that Hubby could come home from work early so as not to drag her around to her sisters appointments. It was hard. And I’m giving myself permission to say that I found it difficult both physically getting out with newborn twins and emotionally trying to keep my sh*t together while all of this was going on.
No one wants to think of their child being prodded, poked, under a general or having major surgery. When you dream of having a baby it’s not with a lifetime of health care attached. I’m not even necessarily saying that it’s a bad thing but it’s not a good thing either. It just is what it is.
Largely I feel quite helpless. I wish it was my body and not hers. If all of the risk could be transferred to me then I wouldn’t hesitate. It’s tough to acknowledge that I can only be there for her as she goes through all this. I try to stay strong and only let the tears roll when she’s not looking. I know my role in this scenario is important, I’m not downplaying the required support and comfort that is and will be required. But as her parent I’ll always wish that I could do more.
I always tell myself how fortunate I am because Little Red is mobile and cognitively okay. But, I’ve learned that it doesn’t really matter what the issue is with your child. The fact that they need medical intervention and care is a huge deal.
I think it’s human to compare to others, especially with the good ol’ “well, there’s worse off out there” mentality. While that may be true, it doesn’t diminish what you’re going through. You’re allowed to say that something is difficult or that it upsets you. I’ve only recently really let myself do that. I’ve partly been fighting it because she’s such a happy beautiful girl and I have so much I’m thankful for. But there comes a time when you need to really acknowledge the reality of what’s been happening.
I regularly get “you cope so well” or “I can’t believe how much you get out with the girls”. To me, I’ve far from coped and going to hospital or other medical appointments and then coming home was tremendously stifling. It got me down.
I think it’s only recently I’ve got a grasp on things. I’ve sorted out a folder with all of Little Red’s medical stuff in it. It even has fancy dividers. I’ve accepted, (or at least, I think I have) the fact that some of her physical ailments are long term. Receiving continued medical care is our life now and with that comes a full range of emotions.
So I guess there’s coping well and simply doing what needs to be done. It’s going to be a journey, of that I have no doubt. This is completely uncharted territory for us and I know I won’t be able to keep my chin up all of the time. But, as the saying goes, when life gives you lemons, make lemonade. And that’s exactly what we try to do by appreciating all that we have.
As I look over to Little Red joyfully hitting herself in the face with a balloon I can’t help but smile. She’s my daughter and I will do everything within my power to help her. The road may be tough sometimes, but we’re taking it together.