We are delighted to share a guest post from FIRST member, blogger, portrait photographer and author, Courtney Westlake.
Courtney, as many of you know, is the mother of four-year-old Connor, and two-year-old, Brenna Westlake, who is affected with Harlequin ichthyosis. Her blog, Blessed by Brenna, invites readers into the Westlake’s lives and home, taking them along on a weekly journey of medical challenges, extraordinary courage, and the most unexpected life lessons of all. Her posts are a unique blend of topics including personal insight, clinical explanations of ichthyosis, and heartwarming updates on Brenna’s amazing progress. It is not only a cultural commentary on living with a rare genetic skin disorder but an authentic, inspirational and truly unforgettable journey of love, hope and family. Her blog this week expresses a moment of transformation and the deep realization of “accepting the life you were meant to live.”
My survival mode and the loss of the life I had planned
by Courtney Westlake
We are now entering the third year of Brenna’s life, and it seems very surreal to me. Every memory of the years since she arrived are some of my most vivid but yet almost part of a blur too – a blur of emotions, adjustments and just trying to find my way. And relying heavily on God and others.
Even though I’ve been a huge fan of Crystal from Money Saving Mom for a long time, I think I was most looking forward to reading her newly released book because I could relate so much. When I first saw the title, Say Goodbye to Survival Mode, I knew I would be able to both relate to the book and take away so much from it.
Because I was in the trenches of survival mode for a long time. The kind of survival living where life continues around you at lightning speed, but all that you are focused on is whether your child will live. The first year of Brenna’s life, I often felt like I was being smothered. Smothered in grief, frustration, stress. I did my absolute best to focus on the positive.
I said no and stepped away from just about everything I had been involved with. I cut my photography studio work way, way back – after having just completed a beautiful renovation to my studio space the year before. I stepped away from volunteer roles with community organizations. I quit most of my freelance writing jobs.
And instead, I lived one day at a time that year, maybe one week at a time during the better times.
In 2012, there was a NICU stay, eye surgery, 4 additional hospitalizations, surgery for g-tube placement, and multiple skin infections. That was what consumed me that year, and I don’t remember much else. I was surviving, and that was the only option at the time.
I forced myself to get dressed in the morning, to try to find a schedule, to become educated on Brenna’s skin care, to continue to do activities and read with Connor as usual. I forced myself to concentrate on the good instead of the bad. Many times, I forced myself to smile.
(And I accepted help. Because I knew that I needed it. I relied so heavily on everyone in my life for help. Lots of help. We have had so much help I can’t even name it all. And I know without that help, I would likely still be in survival mode. And I just want to take this time to say thank you to all of you for all you did for us during that time. I remember every single act of kindness, every card, every message, every gift card and meal. And I still think about your incredible generosity and thoughtfulness all the time.)
And I would say with complete certainty that every morning I got dressed, every time I focused on what we could do instead of what we couldn’t do, every time I made myself smile instead of cry, it was worth it.
Because eventually time wore on…and we began to adjust. To life with two children, to life caring for a rare disease. And I realized that I had the chance to take this opportunity to rise up from living in the day-to-day to living both in the present and for the future. I realized that even though you may not be living the life you had planned, that shouldn’t stop you from living the life you were meant to.
Don’t let the loss of the life you had planned stand in the way of the life you were meant to live.
I felt like I was no longer giving things up, like I did that first year, but instead that I was being pulled in new directions, better directions. And I could follow those new paths by choosing the best attitude every day, by choosing to life with intention, by goal-setting again, by using my time wisely.
And I felt like I was almost getting a chance to start over. I could pursue my “best things,” as Crystal calls them in her book – the things I was most passionate about and most set me toward my goals and most fulfilled me.
As Brenna’s health care became less stressful, I did sit down and evaluate exactly what was most important to me and what I wanted to be involved in and what I actually felt like I had time to pursue again. Over the last two years, I’ve stepped back into some of my former roles, and I’ve chosen new ones, like becoming involved in FIRST.
I also have done a lot of praying. I have tried to really open my heart and listen to where God seems to be telling me to invest my time and my energy. To where I should be using my gifts and talents. And how to best care for and provide for my family right now.
In the first year, this blog (referring to blessedbybrenna.com) was very concentrated on one thing, the thing that was the focus of our lives at the time – Brenna. I was even encouraged by a lot of people to share more about other things in our lives, including about myself, but I just couldn’t. There wasn’t much to write about, because my life seemed to revolve around Brenna’s health.
But, gratefully, even though Brenna’s health is obviously a top priority for our family, our lives are now becoming much fuller with other passions and priorities that we have. I am no longer simply surviving, but I am living with intention and purpose again…and much more so than before Brenna’s birth. Though certain times still call for survival mode, I now know how to rise up again from surviving to thriving so that I am not continuing to live in the day-to-day.
And because of this, my writing and my blog have also evolved. I am pursuing more of “my best” and, as you probably have noticed, I am writing more about those things as they all relate to motherhood and the kind of person that I am striving to be…things like my personal goals, freezer cooking (a growing passion of mine and something that saves my sanity!), the books that I’m reading, the books the kids and I are reading, my emotions and feelings as a mother, some of my various writing projects, and my family.
All of these things – not just Brenna alone – influence my life and my role as a mother and wife…and these things are part of the new world of beauty and appreciation for difference that I have discovered because of Brenna’s arrival into our family.
My survival mode was a dark time….a time with a lot of tears and stress and mustering up all the energy that I possibly could just to parent Connor and Brenna every day.
I am proud to say that I now feel like I am living with purpose and intention just about every day. There are many areas I need vast improvement in, and purposeful living is always an exercise in discipline – it is something I work at every day.
But I’ve found that once you get into the habit of smiling, of choosing to see the good over the bad, it comes more easily in all areas of life. And it greatly impacts all other areas of life.
My life today looks much differently than when I envisioned marriage, children and my career as I was growing up. My planned life was much, much different than my real life is. But today, I’m realizing that this is the life that God had planned for me. When I was clinging to the things I felt like I was having to give up, God was leading me toward a different path, a path where I would be able to use the gifts and talents he gave me in a different way, as part of his plan. In each new season, I am striving to open my heart to where I believe God wants me to be and to go.
Now that I have stopped mourning the loss of the life I had planned,
I am discovering every day that the life I am meant to live is so much better.
Courtney has recently released her beautiful and inspirational book, That’s How You Know, available at www.blessedbybrenna.com. Like a warm hug from a very best friend, its uplifting messages and soft illustrations offer hope and inspiration on every page.