We began this blog a year ago this month...
A year ago this October, at four months of age, Owen had his first bout of seizures, a rare and serious form of epilepsy known as infantile spasms. We were terrified when we recognized the distinctive movements as both Kelsey and I had read online and been warned by Owen's first neurologist, that they were very difficult to treat and almost always indicated a serious underlying problem.
Last October, Owen was plagued by severe reflux and would projectile vomit 4-5 times a day, losing up to a third of his much needed calories. I changed both of our clothes at least twice a day and did dozens of batches of laundry each week. When awake, Owen would cry incessantly. He was confused, scared and trying to make sense of this world that seemed to him, so overwhelming. (A bit of a side note: Owen's fussiness is pretty standard for children who have experienced a major brain injury. I feel confident now saying that it isn't part of his underlying personality, it is an expression of his frustration at attempting to sort out a very confusing world.)
Last October, Kelsey and I were both struggling to adjust to our role as new parents which, as others can attest to, is a big deal by itself, even without all of the layers of complications that Owen's injury brought with it. I was having these feelings that I believe most new parents do, that my autonomy was completely gone. No longer could I go anywhere without being responsible for this new life - and Owen's fussiness, seizures and reflux made it impossible for me to go anywhere with him except to his appointments. Janet had just started helping out one day a week last October and was surprised at what it was really like to try to manage Owen's needs throughout the day. She still shakes her head, herself a mother of three and says she "had no idea."
I rarely left the house last fall, and spent my time sitting with Owen during and after his feedings, trying to help him keep everything down. We sat for HOURS each day. I remember the disappointment when he would start to retch and most everything would come back up. We felt so helpless. Days would go by and I would realize that I had not left the house in a week. I felt disconnected from friends and community although both reached out and attempted to stay in touch.
Overnight I had to adjust to the fact that I was no longer a "professional," a full time business owner, communicating with our customer base across the country each day and marketing our programs to other potential customers. I was no longer able to talk with dozens and dozens of people a day about something I helped to grow, that had become my passion and that I had poured so much of my time, blood, sweat and tears into. This separation and transformation was difficult and would take months to adjust to. It really started to hit me last October when I knew we were entering our busy season, knowing that my help would have been welcomed, but realizing that I could not juggle these two lives as I had thought I would do prior to Owen's arrival.
Last October, Kelsey was attempting to manage Grounds for Change and not only deal with the busiest season of the year, but trying to catch up from the two weeks he spent at the hospital and then the short hours he put in after Owen came home, attempting to keep me from going insane. We were both tired, stressed, and scared.
I find myself reflecting on all of this, not because I feel we are "in the clear", because we're not. Our life has permanently changed and has been infused with challenges that most parents will never know or understand. I am reflecting because as I recently discussed with my friend, Angie, who herself has experienced tremendous challenges the last few years, and who could relate to my sentiments, I can now look back on the last year and say, "We got through that. It was incredibly hard and scary and it is behind us now." It IS behind us. The constant fussing. The vomiting. The total uncertainty. The struggle to shift identities. I think back to the constant weight checks, visits to the pediatrician, the daily ACTH shots, the NG tube, the PEG tube surgery, the MRI, the myriad EGGs, the GI tests and appointments, the in-patient stays for neurological and developmental assessments and the day our suspicion that Owen was visually-impaired was confirmed (one of the worst days of my life). All of this is behind us.
My new role as a stay-at-home mom, which a year ago was so foreign to me, is now a shoe that really fits. In fact, I love it and am thankful everyday that Kelsey and I were able to build Grounds for Change to a point where I can be home with our children. I take walks with friends, fit in a bit of yoga here and there, garden, cook, can and am able to get to all of the household chores and errands that we never seemed to have time to deal with when both of us were working at GFC. Most importantly, I am able to devote the time and energy to Owen that he both requires and deserves, advocating for him on the phone, at his appointments, connecting with other parents who face similar challenges and who are willing to share their stories and advice. I get to be with him each morning when he wakes up, and sit with him in the rocking chair while I wake up and sip my cup of coffee, watching him stretch and come to life. Although it is not a path I envisioned for myself prior to Owen's birth, I now realize that I am so fortunate to have this opportunity.
And Kelsey gets to be the business owner that he told his parents at an early age he wanted to be. It's not that we didn't work well together at our little business, but I believe that the separation of our roles has enhanced our respect for each other. I am amazed at what Kelsey can juggle each day and at the thought and attention he puts into all of the business decisions he makes on a regular basis. He tells me that he is thankful for the work I do at home, caring for Owen and managing the household miscellany, making it easier for all of us to enjoy our time together as family.
So as I reflect on the past year, I realize that we've come so far, made great progress and I am thankful we are where we are at, this October.
Thank you to all who have checked in on us and who have been so supportive of our family this last year. Huge love to all of the mamas out there who I've connected with since launching this blog, who tell the stories of their sons and daughters with love, grace, honesty and who continue to give me the strength to believe in the possibilities.
"Life is either a daring adventure or nothing at all. Security is mostly a superstition. It does not exist in nature." - Helen Keller