Today’s blog post is part of a monthly feature called Mommy of A Miracle written by our mommy and caregiver blogger Kristin Olliney, the mother of seven-year-old Isabella, who suffered brain damage from sudden acute encephalitis at just four-and-a-half. In today’s post, Kristin shares the challenges of balancing being a caregiver, mother and finding time for herself. Read Isabella’s entire story on our website.
As a parent to any child, we have many job titles: chauffeur, cook, maid, etc. When you have a child with a brain injury, you add therapist, advocate, teacher, nurse, caregiver, etc. to the list. The added pressure can be extremely overwhelming and it is easy to lose yourself in the process.
When Isabella’s acquired brain injury (ABI) occurred, I was so caught up in all of her needs that I forgot that I mattered too. Every day was spent at therapies, doctor’s appointments, and meetings, having phone calls, researching and working on her treatment. I put everything I had into making sure that she got all that she needed. I completely put my life and needs on hold.
After the first year, I was a mess. Call it caregiver burnout, fatigue or just exhaustion, but I knew that things had to change. Isabella has a brain injury and if I am not on top of my game, I can’t help her. I hadn’t expected to be in a similar place a year later. I needed to find a balance. I needed to still be me, Kristin, while also being a mommy and a caregiver.
We had missed out on so much since her ABI. Isabella wasn’t in a place that she could visit with family, go outside, go to the store or do all the things we all take for granted. So in seeking balance for myself, I started to help both of us. I spent the first year being so happy that Isabella was here and alive that I sacrificed everything for her. If I had to do it over I would do it exactly the same way. After that first year though I needed to find balance for my own sanity and to help Isabella move forward in her recovery.
Find the balance by:
1.) Getting organized. I have a medication chart so I can accurately keep track of what has been given and when. I have organized all the paperwork that goes along with being a caregiver and parent. A binder of all things related to school and IEP. A binder of all medical information, insurance paperwork, therapy notes, etc. When I need to pull paperwork for an appointment or meeting, it takes minutes rather than hours.
2.) Set goals for the year, including ones for yourself and for your child. The purpose of our goals is to start getting back to our lives and having a sense of some normalcy. Goals can be big or small, but make them achievable. Some of the goals we had last year were: being able to go successfully into a store, going outside for 30 minutes with minimal issues, getting Isabella into her own bed and eventually her own room.
3.) Finding a support group. If you are unable to attend one in person, find one online. Social networks have many different kinds of support groups. I have found these to be the right fit for me. I can talk about what I want, when I want from the comfort of my home and on my time. Having other parents who are in similar situations has been so important to me. I started an online support group for parents of children with brain injuries. I needed support from others who could relate to my life and were in similar situations.
4.) Find something that you are passionate about and do it. Brain injury has become that passion for me. I have learned so much along this journey. My goal is to be able to spread brain injury awareness through public speaking and advocacy. In the meantime, I am an active participant in a few support groups, sharing my experiences through this blog and working on a case study for hyperbaric oxygen treatment. Whatever your passion may be, find time for it.
5.) Be as social as you can. Isolation is something that we all find ourselves dealing with. Initially we isolate ourselves because we are completely caught up in being the caregiver during a crisis. As time goes on your relationships with friends and family change because we lose the common ground or our child is no longer in the same place to tolerate what they once could. I have always been a very social person. I am not a homebody. I crave being out and about. Isabella isn’t in a place to resume our previous life of constant socialization and be actively out and about. As a result, I have had to find the balance. I miss my family and friends terribly. While Isabella isn’t able to tolerate those situations, I can still enjoy them when she is in bed asleep. I have made nighttime my “me time” by talking on the phone, having visits from friends and family while my daughter sleeps or just enjoying the quiet. It has become incredibly important to me.
6.) Take everything one day at a time. Isabella and I are not victims. We are survivors. What happened to her was tragic, but our lives will not be a tragedy. I can’t go back and change it. This is our everyday reality. We take one day at a time. I have a sense of appreciation for life that I never knew was possible. Really, you can’t appreciate it until you are looking at the reality of losing it all. I have learned to enjoy the small things in life. I also allow myself to have my moments. We are parents and caregivers, but we are also human. I have to remind myself of that often. Allow yourself the time to grieve for what was lost. My daughter was robbed of her life. She will never have the life she should have. She will, however, have a life and my goal is for her to be a self-sufficient adult someday.
7.) Don’t lose sight of being a parent. When you become a caregiver, it is easy to lose sight of being a parent also. Isabella and I have made weekends our “vacation.” On the weekends we are Isabella and Mommy. There are no phone calls, meetings, e-mails, research, etc. Those weekends have helped her and I so much.
Parenting, caregiving and your sense of yourself can easily be lost when your child suffers a brain injury. It is a difficult balance, but that balance can be achieved. I have learned that being a mommy to a child with a brain injury is the hardest and yet most rewarding job I have ever had. The pay is priceless as it comes in the form of small successes, pride on their faces and the sense of knowing you fought hard to help them achieve their goals. I am so glad that Isabella picked me to be her mommy.