A guest post by my wife.
For many months we’ve been told several times over that we are brave or that what we are doing is brave. I don’t think either of us realised what that meant until the day Natalie died.
To accept, regardless of how hard she fought or how much she worked for every breath, that this time was different; that this time she wasn’t going to pull it out the bag was utterly soul destroying.
One of the nurses told me that the brave part is recognising and accepting when you’re no longer prolonging her life, but prolonging her death.
The truth is I started grieving for Natalie a long time ago, back to the first time we were told she was going to die. And every other time since. Every time she’d go limp in my arms or just splint her chest to stop the ventilator from working.
After she died I read aloud to her every entry in her diary for the first time. It reminded me that what felt like two weeks of no breathing complications for Natalie was actually 3 days. Looking back through the photos and seeing how far she’s come shows just how sick she was from the beginning. It feels that we were preparing for her death from the start and perhaps we were?
Countless times over the past few months I’ve been using my time and energy to manage other peoples expectations for Natalie and Alexus. Trying to tell people not to get too excited and forestalling their words of hope and encouragement. Measuring and using my words carefully as I try to explain so that they would understand. Yes, I loved my daughter and I still do, but she was a very sick baby. It’s not that I didn’t want to have hope it’s just that I couldn’t bear to.
I spent the last week of her life trying to fit in everything I wanted to tell her and get her to experience as much as possible without tiring her out. Trying to fit as much of me into her life as possible, as many hugs and kisses as she could manage. Reading all the stories I could. Sitting across from her bed at 4am just so I could do that feed. The early morning dark hours where usually you’re just begging them to go back to sleep, I was begging her to stay.
In reality I know she was never going to stay, not really. She may have managed a few more days fighting through every hour, but we would never get the time we should have. The time I hope we get with her sister.
Looking back, Natalie has accomplished so much with so little. I’m amazed, as I’m sure most of the medical staff who have ever met her are, that she made it to 5 months of age. As I said, it feels like we’ve been grieving for Natalie for a long time but it doesn’t make this any easier. It doesn’t make losing a child hurt any less.
If the statistics are to be believed, we should have lost both of our girls a long time ago; but we didn’t. Medical science and Neonatal care has come a long way but despite all the dedication, care and medication not every baby will make it home.
I don’t have any words of wisdom or guidance in this post; just a pure outpour of grief. My husband and I are brave, incredibly so. I just wish we never had to be.
Yesterday whilst we were waiting for an appointment with Alexus after getting the usual questions; we explained that Alexus is a twin and that they were born extremely early. The lady said “Soon you won’t be able to tell she was a preemie, she could grow up and do something amazing”.
We said “she already has”.
The First 6 Weeks 