“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.” ~Elizabeth Kubler-Ross
As my family has been through so much lately and we were finally beginning to feel a sense of relief that things had been settling down with my baby boy we received some really tough news earlier this week. My sweet niece Raven has been diagnosed with leukemia (Acute Lymphoblastic Leukemia). We are all still in disbelief and heartbroken.
Whether you know my family or have been following my photography you’ve likely seen her adorable face a time or two on my blog. It’s tough for me not to be a bit reflective this week thinking about Raven who is now going through so much to help her beat leukemia. I suppose reflecting on Raven’s presence in my life may help in not only accepting this news but in appreciating her sweet spirit that we’ve all come to love.
Raven was born in June 2009 with down syndrome. Much like this news of leukemia came as a surprise to us, down syndrome was something no one expected. Raven surprised us all by arriving six weeks early. She was born with a little mohawk which has surely been one of the first signs that she’s a fighter.
Though she was such an itty bitty baby weighing just 4 pounds she sure did show us her strength early on having very minimal medical concerns.
Though the news was shocking to us all, as the dust began to settle, Erik & Amanda did a remarkable job of stepping up to caring for Raven.
This week as we learned of the diagnosis I think everyone in the family was not only shocked but found themselves reflecting that much more about just how much leukemia has already affected our family. Erik’s mother passed away of leukemia nearly 19 years ago when Erik was just nine years old. I know Erik, like Jason, wishes more than anything that his mother was here to celebrate watching so many moments he’s been able to share with Raven. He lost his mother to leukemia and now he’ll be doing everything he can to help his daughter beat it.
I’ve adored being around to see Erik and Amanda as their baby girl has grown so much in the last two and a half years.
Shortly after Raven was born I recall being unsure of if we’d ever have another child. In fact, I wasn’t so fond of the thoughts because I’m obviously one of the busiest people on the planet. The more I prolonged the thoughts I began to realize I wasn’t getting any younger and seeing Raven born with down syndrome only reminded me that the longer we waited the more likely we would encounter having a baby who would have special needs. The more time I spent with little Raven the more in love I was with this little girl. It didn’t matter if she had down syndrome…she was still such a precious baby girl.
As she grew quickly, I recall miscarrying and having such a challenging month and one day I was asked to help out watching Raven. Thankfully Raven brought me lots of smiles that day…as we had some fun being silly taking photos.
It won’t be long and I’m sure she’ll be running from my camera just like my own kids, but I still make it a point to photograph her as much as I can…because life is precious and now that she has leukemia I’m reminded that my obsession with photography is okay because now we have all these moments to look back on of all the memorable moments before we learned she had leukemia.
Last October when I was pregnant with Chance and just a couple days after we had received the diagnosis of Chance having spina bifida Erik & Raven stopped by to visit. It was a day I recall so well. I was so emotional and heartbroken to learn that what I rushed into in hopes of preventing anything bad happening to my child only lead me still to end up with a child with special needs. As I kept questioning “how” I’d cope with the challenges it was my sweet niece that reminded me that day that everything would be okay with my baby boy. From that day forward as I found myself so close to giving up on Chance I recall thinking about Raven and how there’s no way we could imagine life without our little Raven…she may not know it but in her own way reminded me to hold on to the hope for her cousin Chance. Oh, Raven, I sure do love your kissy face.
We all have felt so blessed that Raven has had minimal medical challenges before learning she had leukemia. She just learned to walk earlier this year.
The more she’s grown the more we see bits and pieces of her adorable little personality.
Yes, Raven…baby girl you’re only two and you’ve already amazed us.
On Thanksgiving Jason’s grandmother and I took a trip to the hospital to visit Erik, Amanda & Raven. She’s already underwent a blood transfusion and a few rounds of chemotherapy. Though she was weaker than I’m use to seeing, she sure was in good spirits when we visited.
Leave it to Erik to help keep her spirits up.
Raven’s been in the hospital nearly a week now. It’s hard to believe how quickly things change in life.
The day I visited her she was in great spirits but grew weaker quickly. It breaks my heart to know how much she will have to go through to beat leukemia. But she’s strong and I have faith that she’ll beat this thing…but we all know it’s not going to be easy.
Thankfully she’s got Boots & Dora keeping her company in the hospital.
Though I know everyone is heartbroken about this news of Raven and we worry about Erik & Amanda and how they must be feeling I also think so much about Jason’s grandmother. She lost Jason’s mother to leukemia and I’m sure hearing the word leukemia this week has brought back so many memories. Hopefully Grandma Bristow is reminded that little Raven has quite a few angels up there watching over her. Perhaps it’s their way of pulling us all together even closer. I know the road ahead will be tough, but I have faith that she’ll pull through and beat leukemia.
HOW YOU CAN HELP ME HELP RAVEN
For those of you who know me you know that I’m guilty of helping a lot of people. I have stepped up to volunteer to help so many non-profit organizations and families in need that it’s impossible for me to just sit here and do absolutely nothing. Aside from prayers for Raven perhaps you can help me. Here are a few things you can do:
- If you’re on facebook join Raven’s facebook page that has just been established. It’s a way to keep updated with how she’s doing.
- Visit Raven’s blog. Her mother Amanda (yes, we happen to have two Amanda Kern’s in the family!) has just started a blog and plans to keep people updated as she is able to.
- Visit Raven’s give forward page and donate to help her family. With Raven in the hospital going through so much Erik & Amanda are still unsure how this will affect them long term. They’ve already missed so much work and this is just the beginning of what is expected to take several years for her to beat. A donation page was established and funds donated will go directly to Erik & Amanda to help them with medical expenses and caring for Raven.
Yes, this seems a little surreal to me still. I swear my family has been through enough. I suppose it’s time to stop wishing for life to be perfect and instead to make the most of every moment we have. I can’t wish away the bad things that keep being thrown toward our family but I can help remind everyone just how important it is to embrace all these moments because every single moment we have with one another is precious.
by Amanda Kern
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