Saturday, May 21, 2016

Caregiver

Life with CF is hard


Well at least I imagine it is. Managing the day to day aspects of this disease involves hours of respiratory treatments, mountains of medication, doctors visits, procedures, tests and time spent in the hospital. All of the effort necessary to live with cystic fibrosis can take a toll.

hanging @ the CF clinic getting vitals taken


Fortunately, most fighting CF have a fabulous and extensive network of caregivers to help them manage the challenges that come with this diagnosis. This network of caregivers starts with spouses, parents, siblings and other family members, but also includes friends, teammates and other members of the community. In this podcast, Gunnar Esiason highlights some of his caregivers, and talks about the role of his college roommies at BC and how they supported him during that crucial time in his life. Search blogs and YouTube channels and you turn up several accounts of  caregivers that help CFers manage life so they can thrive. These caregivers provide love and support and among other things, they listen, provide transportation to appointments, nag give gentle reminders about meds and offer companionship during long hours of treatments or time in the hospital.

For a child with CF, the most recognized of these caregivers are parents and often the most visible caregiver is Mom. Courtney Schmidt reminds us in a column she wrote a couple of years ago for Mother's Day to remember the mothers of sick children. Her words eloquently describe the reality of supporting a child who is fighting for their life. When reflecting on these moms we consider not just the challenges they are faced with but also their strength and endless love. We admire them and feel drawn to help.

Moms Moving Forward


Last fall, right around the time it clicked for us that we needed to get more involved with advocating and spreading awareness for cystic fibrosis, I met Denise, a mom on a mission very complimentary to ours.

Exercise, running specifically, became a lifeline for her to manage the routine, challenges and stress that come with supporting a child with type 1 diabetes who also happens to be on the autism spectrum. Her time hitting the pavement and exploring the trails brought balance and peace and she knew that she needed to share this feeling with moms experiencing similar situations.

From there, Heart Strides was born. The mission is simply to help moms at a time when they are least likely to take care of themselves. Moms are the first to put their needs aside when caring for their children - especially if their child has an acute medical challenge, chronic illness or special need. Heart Strides exists to support that mom - who gives so much of herself - so that she can continue to be a caregiver and a leader of their child's fight.

Proud to be a Heart Strides Advocate


One of the simplest forms of self care a mom can do is take time for a few minutes of exercise - that is where Heart Strides lends a hand. By providing the appropriate gear - proper running shoes, socks and technical attire, and a bit of encouragement, Heart Strides helps moms get moving. Having found the balance I need to support Colin's fight with CF through exercise, I am excited to be able to support the Heart Strides mission as an Advocate.

Exercise is one of the most powerful therapies a person with cystic fibrosis has at their disposal and I suspect it is vital for the well being of children battling other medical conditions as well. A parent is often the most influential role model in a child's life - they have the greatest opportunity to encourage a child to make exercise a habit. It is because of this, I feel especially drawn to advocate for these moms. She is the heart of the family, support Mom, everyone benefits.


Do you know a mom in need of support from Heart Strides? If so, you can pass along her name to me or you can nominate her to receive a care package by filling out the form here. You can also help by donating new or gently used active wear and running shoes to Heart Strides.


Connect with Denise at the Heart Strides Facebook Page.


To that mom with the sick child, let's go for a walk or run sometime. ~ Kim

From the bottom of my heart thank you to all of the caregivers who help support Colin: Brian, Taryn, Grandparents, Aunts, Uncles, Cousins, Friends, Teachers, School Administrators, School Nurses, Coaches and his Medical Team. We are so fortunate to have such a wonderful network.


Thursday, May 12, 2016

2 Races to Go - Seven Before 7

Happy Cystic Fibrosis Awareness Month

Hard to believe that it is mid-May already, March and April flew right by for us. Winter finally showed up in March and lasted into early April- even though we thought we were about to get away without much snow or cold.

Colin stepped up his battle with CF getting a gastrostomy tube placed on April 14. He has really adjusted well to his new nightly feeding routine which is such a relief for us - he is even gaining weight already.

May brings us busy weekends with yard work, spring sports, birthdays, a quilt to deliver to Kim and of course, races. We are looking forward to the warmer temps and fun ahead.

Seven Before 7 Update

Race 3

In March, I traveled down to NYC to run a half-marathon with 20,000 new friends. Too bad I had the flu and didn't get to really enjoy the experience. After crossing the finish line I went directly to the aid tent to warm up before heading back to my hotel to shower and catch the train home. Even sick, running the NYC half was such an amazing experience and I hope to get back to the starting line of that course again when I'm well. So many  memorable parts of that race - spending time with my great friends from OutRun38, the seemingly tireless crowds that lined the course, the energy of times square and the roar of the finish line. 

Smiling as I look for the finish line!

Race 4

After getting over the flu and a nasty ear infection, I turned my attention to a very different kind of race, a trail half-marathon on Cape Cod with my friend Robyn. We headed down to Falmouth on Saturday, April 9 for the Cape Cod Trail Race scheduled for Sunday morning.

On our way to the pre-race dinner!

This was absolutely the most beautiful race course I have ever experienced and probably the best organized and executed as well. The morning started off a bit chilly and windy but the sun was warm and once on the trails, the wind was blocked a bit by the trees. I think this race got Robyn hooked on half-marathons and if all goes well, hopefully we'll be back next year to do it again!


Brr, a little chilly at the start

One cool thing about this race is their focus on environmental impact. No disposable water bottles (we had to bring a hydration pack or hand held water bottle) and all trash was recycled or composted. Even the medals were recycled cohog shells.

Gorgeous!

There will definitely be more trail races (and races with Robyn) in my future! 



A very genuine finish line smile! 


Races 5-7

Injury, sickness and over-training have resulted in a bit of reflection. I have scaled back the distance for two of my last three races so I can finish strong at the end of the month.

Race 5 

On May 1, I traveled a few miles down the road to a neighboring town to run a 5K hybrid road/trail race with Robyn for to mark race number five.  Originally, I planned on doing the 10K, but was happy to toe the line for the 5K. Even better, Robyn PR'd and blew away her best 5K time by several minutes. So awesome!

Ready to finish before the rain!


Coming up. . . 

This weekend brings race 6, my first sprint triathlon in 12 years. Adding to the difficulty (because, why not?!), I plan on riding "clipped into" my bike pedals. This could make for an interesting T2 if I can't stop.

The day before Colin's birthday is race 7, Boston's Run to Remember. Originally I planned to run the half marathon but sanity has been restored so instead, I'm going for the 5 mile race. Joined by Robyn and some of my friends from OutRun38, I think this is going to be another really fun event!


After all of this racing for Team Boomer, I'm looking forward to a bit of rest and a hiatus from
training and racing and hopefully a bit of beach time with the family! 


Running (and swimming and biking) through May ~Kim


Tuesday, May 10, 2016

Yoga for CF

I am so excited to be teaming up with Tory J. Nash yoga for a second year to offer a Yoga by donation class to benefit the Boomer Esiason Foundation and Team Boomer! Come out an join me on the mat and support a great cause while giving yourself time and space to breathe.

Unleash your Warrior

Details


Date: Sunday, May 22, 2016
Time: 3:30 p.m.
Location: Earthsong Yoga - 186 Main St., Marlborough, MA 01752

You may bring your own mat and props or use the mats and props available at the studio while participating in this class designed for all yoga skill levels.


Namaste ~Kim