Saturday, November 26, 2011

Amberlyn, Hope & Loss

l.QQZvWzsWIUiHkSPt This is a post I need to write, but have been avoiding. It's not about Jackson. It's about my friend Amberlyn. In August, she found out she was experiencing rejection in the lungs she got in October of 2009. The doctors did everything they could to try to stop it, but were ultimately unsuccessful, and Amberlyn passed away on November 18, at the age of 22.

She wasn't my very best friend or confidant. We didn't talk every day, and had only met in person once. But she was so dear to my heart. She was the first adult CFer I came to know after Jackson was diagnosed, and not only a great source of hope and inspiration to me, but an outstanding person regardless of her medical background. In spite of all the time she spent in the hospital, she always had a dozen side projects going. She was the head of her own non-profit organization, Amber's Angels. She spearheaded projects to bring comfort and joy to children and families living in hospitals, especially during the holidays. She put together a concert series to bring music to kids who were missing out on their own summer nights, and made Christmas care packages for the ones who couldn't open gifts at home on holiday mornings. Even as she was unable to talk at the end of her days, she begged her mother to continue and not let these kids go without just because she was sick. She also was an avid supporter of the military, and families struggling with a deployed loved one. She held jobs outside the home and usually had two or three other side projects running at any given time. She refused to stop living, so when I found out that she had died, I was shocked.

I had noticed that I hadn't heard anything from her in a while, and had known that she had been back in the hospital quite a bit, and made a mental note to see how she was doing. In the business of moving my house and celebrating my best friends marriage, I didn't follow up as soon as I would have liked. Last week I got home to our old place for the last time after spending the day moving and painting our new place, and logged on to the computer to find a note from her mom that she was gone.

When she was first diagnosed with rejection, it dawned on me for the first time that I would outlive many of my adult friends with CF. There is a select group of incredible people around my own age who carry the same disease that my son does, whom I consider to be my extended family. They are undeniably strong, confident, persevering, and understanding without letting me indulge in self pity. They show me in word and deed the kind of promise my son can realize, and de-stigmatize life with CF. They make me a better parent to Jackson, and I would be lost without them. At the time I began to have this realization, I believed that the death any of these friends would make me less able to cope with Jackson's disease. It seemed like it would be driving home the potential for tragedy in my own life. But when it came down to actually losing someone I loved, it was just that. Amberlyn's death is not just some reminder to me that Cystic Fibrosis exists, and is an ugly disease. It is simply the loss of someone who had a great impact on my life and my outlook. It was about HER, not about me or my sadness. The grief seems oddly unrelated to how we came to know one another. Strange as it may sound, I am thankful for that. I am thankful that she was not just someone I clung to as an example of life being ok as my own child got older, but a person separate yet undeniably entwined with the genetic defect that introduced us.

I still have a very hard time believing I won't be able to talk to her again. That she will never tell me how much she adores Jackson and how she is keeping up with all that we do. I won't have the opportunity to visit her, and she and Jackson won't know each other as he grows up. I haven't accepted that, although I am trying.I looked for the pictures we took together when we went to visit her at Dell Children's in Austin, and I can't find them. I'm sick and sad that the brief moment we captured is also gone forever. I think every day of her mother, her family and friends, and the hole her absence leaves in their lives. I won't forget in time what she meant to me or to others. I will continue to support her organization and strive in my own life to remember to do what I can for others.

Saturday, November 5, 2011


I haven't been forgetting to post, I swear. And yes, I expect you to believe me again when I tell you how crazy life has been.

Since I last sat here to write to you, life has swirled around us like the tornado around Dorothy in the Wizard of Oz. Some new things have come into our life on the swirling winds, and others have slipped away.

We have survived the first month of respiratory season, weathering a couple of ear infections, a respiratory infection, and a respiratory virus. Lots of antibiotics and extra treatments, but Jacks played Iron Man through it all and defied IVs and Hospitalization. He's steadily growing, and even- dare I say?- looking a bit chunky these days. Other than the hours of the day we spend doing treatments, and the little valve poking through his shirt, nobody would ever know he was anything but a wild, happy, silly toddler. He has made it a year since his last respiratory hospital stay (I'm not counting the short stay for his G Tube!)

My last several posts seem to have been dealing with my finally coming to terms with Jackson having Cystic Fibrosis. (As much as one ever can.) Since his diagnosis there have been many ups and downs, and now, for the moment at least, life seems to have normalized. SO much of what I have shared here has been sorting through my own grief and hope. Now that the intensity of that grieving seems to have settled some, I sometimes wonder what to write about. It's a blessing that every moment and every though isn't wrought with the disease, but I don't want to leave this space. I'm thinking of mixing in more 'article' type posts, sharing how we cope with and strategize some of the different aspects of integrating our CF life. That way I Have something to offer during the time when CF isn't dominating our day to day (which is a good thing!) Is there anything you're curious about, or would like to see covered? I don't mind sharing things, so if there's something you wonder about, ask me, I'll gladly write about it.

In the coming week we will be celebrating the marriage of my best friend, and closing on our new house. Then a couple of days work on the house and then taking up residence there. It's going to be busy. I know, you're shocked. Hopefully I will catch up here before the dust settles.