6 Habits of a Rare Mama -My Goals for the New Year

 

Like most of us out there, for the last couple weeks I have been thinking about what my resolutions for the New Year would be. Fitness, finances, …all the same things that for me personally are going to last 7 – 10 days if I am lucky. Also like a lot of us out there, I have been on Pinterest a lot the last couple weeks. Of course looking for the best answers to the goals above, but also looking at quotes both inspiring and funny. It was in looking at these and seeing common phrases along with talking to my husband one night that I knew what my goals really needed to be. I kept finding quotes about  “10 habits of  (fill in the blank with anything really)”. What stood out to me were the top 10 lists on being a mom and a woman. They all really said the same thing and I began looking at them with my perspective as a mom of a child with a rare disease. Four years ago this month, my then 8 year old perfectly healthy son threw up. No big deal. 48 hours later after seeing his pediatrician we were in Primary Children’s Hospital in Salt Lake City, Utah watching his kidneys fail and having no answers. After 30 days we left the hospital with our son and a life changing diagnosis for him- Atypical HUS (Hemolytic Uremic Syndrome), an ultra-rare, chronic and life threatening disease. Today he is good. And by good I mean he regained all his kidney function, takes 11 pills a day, goes to the hospital every 14 days for an IV infusion of a very expensive medicine and carries on like every other tween out there I know. You know- good. So why is it so hard for this mama to be “good”? Because I’m a mom and we are the best out there at worrying, thinking about what ifs and complicating every little thing in life. Why? Because when you pace the hospital floors at 2am for a month wondering if you will take your little boy home, a part of you is shattered, destroyed and can never come back. So suddenly goals like losing 20 pounds aren’t as important but keeping your sanity is- and it’s a lot harder. My goals this year are more about my mental and emotional well-being, and I’m seriously keeping my fingers crossed that with a better emotional outlook, those extra pounds I added these last four years are going to magically disappear. Here I have taken my favorite “top 10’s” and added how I’ve learned about them in my own life and planning on sticking to them this year.

 

1-    She makes time for herself.

Most days I feel like all I do is eat, sleep and breathe this disease. As a mom, I’m in constant what if and worry mode. It never leaves me. I joined a book club a few years before Ethan was diagnosed. We meet once a month and it’s the best time. I love to read. I was an English major in college just so I could read books for homework. When he got sick, I missed a few months of reading and going to our book club nights. It felt like too much and that I shouldn’t be away from home. Thankfully I have an amazing husband who encouraged me to keep going and practically pushed me out the door on the nights I thought about quitting. This has been a life-line for me. At least one book a month where I have an escape in to a different time or place and at least one night a month I laugh so much my ribs hurt, I eat so much good food my stomach hurts and I am all me for that night. Find a hobby. Have a girls night. Go get your nails done or go get a massage. Set aside at least one day or night a month that is just for you. You need to put on your oxygen mask and take care of yourself before helping others.

 

2-    She educates herself

Whatever the disease or condition is- research it. You don’t have to be a doctor to even try to understand it. I have found the more I can learn about my sons disease makes it easier to not only talk to our care team but to be able to make decisions about his health. I don’t understand it on the same level as his care team does, but I can get what they are saying enough to feel like I am making the right choices. We currently are in the process of making a HUGE treatment change decision and I have been learning about options for over two years. Take a deep breath, read those journal articles and take notes. Have a two-way conversation with your doctors about what you have learned instead of just hearing their side. Education is key to making big decisions.

 

3-    She understands guilt, accepts it and moves on

Oh boy. This is a big one and on so many levels. I had so much guilt that my other children are constantly with a sitter or a friends house while I take my son to his treatment. Or that we don’t do something or go somewhere as originally planned because of how he feels. I had serious guilt when I learned I carried the genetic mutation and passed it to my son. Why was he sick and I wasn’t? I gave this to my little boy. The guilt went on and my tears didn’t stop for a week. Talking to other moms was a lifesaver. They understood it, they had the same thing going on. An incredible friend pointed out, yes you gave that to him. And his brown eyes, and his dark hair, and his…… That list went on and was stronger than the guilty list I had been making in my head. Yes I’m going to feel guilty about a lot of different things but good grief I don’t have time for it anymore. My kids will learn to be resilient, to adapt to change and realize that not everything is always about what they want to do. They have become such little compassionate fighters that I make a list of all the pros now instead of the guilty cons. I don’t have time for guilt anymore because it was taking up too much of the energy I had to give. Say goodbye to guilt.

 

4-    She celebrates wins- big and small

Every year I think ok this is the year we find a cure. And all goals are big and amazing. And then the year ends and we don’t have a cure and we don’t have all the big things crossed off the list we wanted. Now I am a goal setter and a list maker and sometimes those two things get confused and mixed up with how they should be. We need to set goals but celebrate every little win just as if it were hitting the big one. For us right now it is getting our son to take his meds every morning and night on his own. Without us telling him. He’s twelve and has the attention span as long as one of his own Nerf gun bullets flying through the air. But we set some goals for him, put reminders on his phone and so far it’s going great. As a leader for his foundation, my ultimate goal is to find a cure. But you know what, I’m celebrating that we are launching a new website, are partnering with new companies and finding more patients every month. A cure is going to happen, I know it will. But rather than focusing on the things that aren’t getting crossed off the list, I’m rejoicing in all the small things we are doing to create the foundation to find a cure. When Ethan was in the hospital every morning I waited to hear his labs results- we needed drastic changes in numbers. When they didn’t move at first I was discouraged, but then excited when they only moved a point or two. We bought him a turtle that shined stars on the ceiling at night. We were reaching for those stars but knew that slow and steady wins the race every time. No longer did we hope for big jumps in numbers, we just wanted continuous improvement. And it came, slowly, everyday until we walked out of that hospital feeling like winners. We have learned to be like turtles. Slow and steady.

 

5-    She serves others

I am fortunate to live in a culture where serving others is just part of life. We have been the recipients of many acts of love and service and have been able to give it as well. Nothing makes you feel better than helping someone in need. Even in my lowest days, when I am able to do something for someone else- it makes my day completely better. I remember someone showing up at my door, cleaning supplies in hand. She walked right in and started cleaning my house. I was in tears and was so thankful for her. What an honor it was months later to be able to serve someone else in the same way. I am always grateful for examples of service and gentle reminders that we are all suffering in some way and need to be served. Those who we think have it all together still need a phone call to say hello, a text to say just thinking of you or even a drop by visit to see if they need help with anything. When we are feeling down, what better way to feel whole again than by helping someone in need. Serve. Love. Be kind.

 

6-    She smiles

I left the hospital late one night when my husband and I switched shifts. I sobbed for 15 minutes on the freeway, it hadn’t been a good day. I pulled off the road and went into a gas station, getting a drink and a snack. I think it was the first thing I’d eaten all day. My eyes were red and puffy, my nose running from crying and I’m not sure if I had combed my hair that day. I kept my head down, embarrassed and went to the counter, quickly handing the cashier some cash. As he handed me my change, I glanced up and he smiled at me. A concerned and sweet smile. I left and had a much better drive home. When I’m at the hospital I see the faces of so many parents. Tired, sleepless and fearful. I try to smile the whole time I’m there. Smiling at them because a smile made a huge difference to me one night and I hope it will for others as well. There are plenty of times I don’t feel like smiling. But really, despite everything I can count wrong in a day, there is always at least one reason to smile. So find that one reason, smile big and rejoice in that moment. Carry that smile with you and share it everywhere.

 

Being a rare mama is hard. But it is also amazing, because we get to see a different perspective on life, realize what really matters and how ultimately realize we only have a small level of control but learning to adjust and adapt to everything that is thrown at us is going to change an entire day. And then a week and slowly change the world. These 6 things are more goals for me than anything right now. In a world of medical everything where I may feel lost and frustrated, I can control these 6 simple behaviors that I hope will not only help me but will be an example of strength to my kiddos and others around me. Stay strong rare

 

-Anne Bruns

 

Anne Bruns is a rare disease advocate, non-profit leader, motivational speaker and most importantly a mother and a wife. She holds a Bachelor of Art in English from Weber State University and is the Associate Executive Director and Operations Manager for The Atypical HUS Foundation, a non-profit dedicated to serving the families affected by the disease her son has. She is the 2017 Chair for Utah Rare, a coalition of rare disease advocates bringing awareness to the rare disease communities of Utah. She has spoken across the country on behalf of rare disease and is available for collaboration and speaking engagements. In her free time she writes about everything to do with home, family and travel on her blog, Sassy Haven.

www.sassyhaven.org

www.ahus.org