Tag Archives: Heterotaxy Syndrome

Support System

Since Noah passed away, I continue to get advice on self-care.  One aspect of self-care is having and actually utilizing a support system.   Most people have support systems.  One isn’t required to be a member of the sad, unfortunate bereaved parents club to have one.  For me, though, since losing my son, I’ve become much more open to this concept and much more appreciative of having one.

I’m so grateful for my friends and family members far and near who are there for me.  I am grateful for their love, compassion and efforts to walk by my side on my journey.

I’m also fortunate to have a few bereaved parent support groups.  MLH and I had one while living on the east coast.  We were sad to leave this group.  We miss its members and think of their children often.  When we moved I searched for a local group and recently found one.  Additionally I have a virtual group that consists of parents who also have lost Heterotaxy children.  I am so grateful for having these groups in my life.  They’re an important part of my support system.

Within my support system I have “a triathlete section.”   Here I have my friends and family members who tolerate my training schedule, inquire about my progress and cheer me on.

Members of my tri clubs are also part of my support system.  The interesting thing about this group is they don’t even know it!  They don’t know that by showing up, focusing on the workout, talking about a race, discussing technique, and doing pretty much anything related to training they’re providing a tremendous amount of support.  Not asking if I have children but asking about PRs, favorite segments, bikes, races and training schedules is the best support I can get at that time.

What does your support system look like?  Are you utilizing it when you need to?  Are you part of somebody else’s support system?

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Congratulations, Team A & A!

Congratulations, Alexandra, for winning the “Biggest Loser Competition” sponsored by her fiancé’s work.  She lost all of her pregnancy weight!  The secret weapon to her success was her Heterotaxy angel Ava.  You can read more on Alexandra’s blog.

Alexandra, I am in complete awe of you and Ava!  You are an amazing woman, friend and mother; a true inspiration!  Go Team A & A!!!

PS: I posted this on I Tri 4 You’s Facebook page but I guess I should have posted here first.  (I’m still trying to figure out when/what to post here and/or what to post on Facebook.)

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Baby Pierce

This morning Pierce who also has Heterotaxy Syndrome passed away.  I’m dedicating today’s training session to him.  Please keep Pierce, his parents, the rest of his family and friends in your thoughts and prayers.

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Two New Resources for Bereaved Parents

This post is not about my triathlons. This post is about two new resources for bereaved parents.

Still Standing Magazine: It’s an online magazine for women and men who have experienced loss of a child. I’ve been following this magazine since its launch in May. It offers very helpful articles, blog posts and other resources.

Heterotaxy Bereaved Parents Network: This Facebook page was created yesterday! It’s for parents who suffer from losing a child with Heterotaxy Syndrome. Full disclosure – I have been advocating for the creation of such a group and am a huge fan of its creator (who is an amazing woman, friend and mommy). I’m also an admin. for this page.

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What a Difference a Week Makes!

With my six mile run today I completed my first training week using Pete’s online coaching plan.  It may sound a little funny but already I feel very different.  I’ll go ahead and acknowledge the placebo effect is probably at play.   Something along the lines of “oh wow I’m now doing something different so I must experience a change.”  Placebo effect or not, I’m not sure it matters.  The fact that I feel different is good enough for me.

I wrote in my last post that I rarely did a full cardio segment and a complete strength training session back-to-back.  Well a few days after writing that post I pulled out my training plan for Nation’s (which I created myself).  I have a correction to make:  I did in fact do such workouts (also known as two-a-days) early in my training and quite often. I can blame bad memory for thinking two-a-days are new to me but I think there’s something more to it.  For some reason I felt my two-a-days this past week were…well different.  They were much longer and more intense than what I did for Nation’s.  Also, I’m sure since Pete planned them they’re better structured than what I put together.  And there’s the placebo effect.

During this past week’s training sessions I felt solid.  I did struggle some on the bike, specifically with keeping my RPMs and heart rate at the desired levels.  Also the last five miles of my 30 mile ride yesterday was by no means easy.  (And as mentioned before I did have to push it a bit with the weights.)  However I felt pretty good right to the end.  Don’t get me wrong, I definitely worked hard this week but I never felt like I couldn’t finish.  I do realize Pete’s current focus is on base building so I anticipate my workouts becoming much more difficult very soon.

Anyway back to this difference – or really differences.  What are these differences, you ask?  I feel like I’ve taken my training up a level already and I feel more confident.  I think I was a little anxious about not being able to follow Pete’s plan.  Well I did and while I experienced some challenging moments, I completed each session strongly.   I feel more focused.  A lot of this has to do with the need to keep track of my drills during each workout.  But also I’m zeroing in on my very specific goals which are to successfully complete Hawaii 70.3 and improve my splits at Nationals.  With each successful workout my body moves closer to being ready to compete.

I do feel one other major difference but I don’t think Pete’s plan has anything to do with it; I think it’s just a coincidence…or perhaps not.

Over the past week my connection with Noah became much deeper and different.  Outside of training, I think of Noah a lot. Sometimes he’s in-and-out of my mind very quickly and other times I spend quite a bit of time thinking and recalling vivid images of him in my head.  When I train though I believe how I think of him is different from this.

Last May I began feeling a very deep connection with Noah as I became much more aware and grateful that my heart could easily handle my endurance training and I could process the oxygen needed during these workouts.   When I feel or see (on my heart rate monitor) my heart rate climbing and hitting 60-85% effort, it’s almost as if I’m raising it for him.  When I feel my breathing becoming labored, I think of the ventilators he was on and I feel as though I’m breathing extra hard for him.  And it’s the stark and unfair contrast between what I and any other healthy body can do seamlessly with what Noah struggled with all of the time.  It’s this appreciation combined with sadness and a little bit of bitterness (yes still) that helps me dig deeper to find that determination and power to push myself harder, faster and longer.

During my workouts this past week though I’ve started feeling a different kind of deep connection to my son.  I now feel his presence almost constantly and this feeling is definitely different than my “non-training day-to-day” thoughts of him.  During my training, talking to or thinking of Noah is like second nature now.  It’s like at some other level I’m having a constant dialog with him as I swim, run and bike.  I’d like to think he and I’ve gotten used to training together, and our routine has him with me all of the time.  I’ve been thinking about how best to describe this and I’ve come up with “endurance consciousness.”

I continue to push myself to achieve 60-85% of my maximum heart rate (depending on the drill) and reach that labored breathing because there’s that connection I still have with him.  But now I have another one.  I’m so grateful for both.

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On a somewhat separate note, please pause for a moment to pray for or send positive thoughts to the parents of a little Heterotaxy boy named William.  After fighting super hard, he became an angel last Thursday.

It’s probably no surprise to you that I spent my first mile on my run today thinking of William and his parents.  I found myself welling up a bit when I thought about what his parents are experiencing right now.  Nobody should have to deal with losing a child.

Noah now has another friend in heaven.  God bless you, William.

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