Learning to Live

It's been over 6 months since we lost Isla, and we've gotten a ton of love, support, and inquiries as to how we are doing. I've decided to add some entries to this section to keep you guys updated about our family.

To put it bluntly: losing Isla totally sucked, and her absence continues to suck. Not a day goes by when we don't feel the gravity of our loss. She would have been 10 months old now, and I've had to put down the baby books and quit reading about what most babies are developmentally capable of by this point. She'll always be a little 11-pound rosy-cheeked 5 month old in our memory.

We've kept in touch with other heart baby families, and are visiting one of Isla's former roommates, Emerson, and her parents in Oklahoma this coming weekend. Emerson's heart problem is not as serious as Isla's, and she is doing very well. Another former roommate, Beckham, is home with his parents and is in a terminal situation. His mom and I keep in touch and she sends me beautiful photos of their family crossing things off Beckham's "bucket list", like going for a walk in the park, having a picnic, going for a swim, etc. One baby who was just coming in the CICU as we were leaving, London, is now 8 months old and has had a couple of scares with heart failure and not being eligible for a transplant, but for the time being seems to have pulled through and may be able to get her Glenn surgery soon. All of these families have a different type of heartbreak. All of them are home with their babies, all of them worry day and night, some have home nursing care, some struggle with the demanding feeding and medicine schedule, some have to cart oxygen, IV drips, and other equipment around everywhere they go. Careers have been put on hold, vacations postponed, and hours of sleep have been lost to the fear that their children might stop breathing during the night. Keeping in touch with these families has been somewhat therapeutic; it makes me understand that her struggle is shared by many, and helps quell the "what ifs" that bubble up in my mind every day.

And there are so many what ifs. I am just starting to learn about the nature of grief and what it does, how it changes a person's attitudes and perceptions and the future trajectory of one's life. I wonder if we had elected to intubate her, if she would still be here. If she could have recovered from her dip in cardiac function, as so many other heart babies I have seen do. If intubating her would have led to a hectic, rushed and painful end as opposed to the sweet, peaceful way we saw her pass. But I know "what iffing" is a waste of time, energy, and emotion. I always try to bring myself back on track by remembering the great times and trying to forget the sad ending. When I go out, I want to be remembered in my prime, and with the grace and dignity I had when I was not doing so well. I think that's what we all want, and I'm confident that that's what would make little Isla happy, wherever she is.

I feel blessed to have been here for her, for Dan to be able to be there for her, and for the fact that he and I have been through the unthinkable and I'm pretty damn sure we can get through anything together. Creating this life, experiencing all the ups and downs, and seeing it through to the end has welded us together in a way I never could have expected, and I'm grateful for that.

For me, the bad days still outnumber the good. I guess I thought I'd pass this magic threshold once we had passed the 5 month mark, once Isla had been dead longer than she had been alive, as if the cosmos would re-balance and life would get back to normal. It's not there yet, and might never be there. The bad days might always outnumber the good, but I have hope for the future, and in times like these I know that is the most important thing. I hope that I can eventually remember her sweetly, and that the backdrop of tests, IV's, hospitals, medical equipment, being separated on the day of her birth, watching her take her last breath, and all those less-than-awesome memories can fade into the background, and that I'll be able to remember the best times. I hope someday Dan and I can have a healthy, vibrant family and get another shot at parenthood, because I think we made damn good ones.

We're parents without a child, and we still have the occasional awkward conversation when someone asks whether we have children or how the baby is doing. We're amazed at how inept other people are with dealing with it, the way they will get embarrassed and apologize profusely once we tell them about Isla. She's our chubby pink little elephant who never leaves the room, and we LOVE the opportunity to talk about her! The best thing anyone can ever say is, "Tell me about her. What was she like?" I think the same goes for asking after anyone who has passed.

So, to wrap up this senseless rambling, I’m putting myself in the habit of getting it out and finishing my thought on a positive note. I absolutely LOVE this picture of Isla cracking herself up in the mirror. She’s in a hospital bed, having had more needle sticks than most grown adults have had in their lives, covered with itchy medical equipment, with socks on her hands to keep her from pulling out her nasal cannula, and she is just cracking herself up. She’s delighted at her own reflection, waving her hands around and clasping them through her sock-mittens and just plain tickled that the baby in the mirror is doing the same. She had a lot of days like this. She didn’t care that she was in the hospital; hell, when we took her outside she usually just slept for hours. She spent plenty of hours happy, alert, and sharing the simple joy of her cuteness with herself.