Hospital advice

I intentionally skipped the CHD awareness social media post prompt yesterday. I thought I didn’t have much to say on the subject, because Kiran hasn’t spent that much time in the hospital.

Today, after essentially running another Kiran-related meeting (communication team), I realized I have some pretty important advice to offer:

YOU are an important member of your child’s care team. Arguably THE most important. No one knows your child like you do; no one loves or cares about your child like you do; no one can advocate like you can. It’s so important to make your voice heard, even if you feel like you are being loud and pushy and controlling – I learned long ago to just be THAT mom.

Own it.

I’m sure it annoys some. But I know that a lot of people appreciate it – the ones that truly *also* want what is best for your child. They are happy to see you advocate and make some noise.

Sometimes, parents hold more power than they do and can work toward real change.

And in any setting, ask questions. Clarify definitions. Don’t let people talk over you or talk in code. Make sure you have a solid understanding of the diagnoses or the decisions being made for your child.

It gets easier with practice – I promise. If I can be that mom, you can be that parent/caregiver/support person, too!


The Overlay

I have noticed – in my daily postings for CHD awareness this month – an overlay of despair. There is a grey tinge, a negativity shrouding almost every post I make.

It isn’t usually this way. I usually try to make it a more comfortable story for the outsider. I try to point out the silver linings, wrap it all up in a neat, tidy bow, to make the journey our family has been on more palatable to the general public.

I *want* people to see the sunshine that shines from Kiran’s very core. And I want to be the kind of mom/caregiver/person that can pocket that sunshine in every circumstance.

But I’m also bringing forward my word from last year: authenticity. I am really trying to stop camouflaging my feelings. I’m tired of being small and tidy.

It’s a practice I am doing not just publicly but within my own self. It has been challenging me, this year, to look at some of these photos and share about some of these times. Partly because I am not pretending with myself either – and probably largely because I know another heart intervention is coming.

I welcome the freedom and catharsis I have recently regained in being able to share more authentically and write what’s in my heart fully.

CHD Awareness, Day One

Heart Warrior.

There is a reason we use the term warrior to describe our children born with congenital heart disease.

I am convinced Kiran was born strong. A fighter. I wish it did not have to be so – or, at least, he did not have to utilize these attributes of his so often.

Daily, his warrior spirit is calm, content. He is a go-with-the-flow kind of guy, and he is just so filled with joy almost always.

But when the health battles come, you see the fight. It is something I have seen in all of the heart kiddos I have met or gotten to know virtually. They have true grit.

Introducing Kiran

Kiran has been invited to be one of the highlighted kiddos for the Simpson College Dance Marathon this year that raises money for the Stead Family Children’s Hospital in Iowa City. This is cool, since Kiran’s specialists are all at that hospital. I was asked this week to introduce Kiran, via email, to the execs of this event. Obviously, for something like this, they want bits of his medical story, but that’s never where I start. This isn’t what I wrote in that email, but if I were to introduce Kiran to the world, it would go something like this:

When we chose his name over 24 hours after he entered this world, I had no idea how fitting it would be for him. Kiran means “ray of light”, and this child is absolutely the brightest light I have ever known. His smile is contagious, and you simply cannot spend time with him without feeling just a bit better about – well – everything.

Kiran is a social seven year old; he absolutely LOVES his people. If you’d let him, he would just hug and snuggle with you all day, especially if you were willing to talk or sing directly into his ear while doing so. He enjoys music, Daniel Tiger, and watching football on TV.

Kiran was born with a very rare genetic misspelling on the gene RAB11B. In the research, there are only about three other kids worldwide with this same genetic misspelling, but I have connected with a few other families via social media, so we know there are a few more out there! Kiran is unique in that, in addition to the characteristics associated with this genetic diagnosis (such as intellectual disability, nonverbal, vision issues, motor difficulties), he also has a critical congenital heart defect called Tetralogy of Fallot with Pulmonary Atresia and Major Aortopulmonary Collateral Arteries (MAPCAs). He had an open heart surgery when he was ten and a half months old, and we are actively monitoring his heart for a necessary, planned upcoming procedure. Kiran is a wheelchair and assisted gait trainer user, is learning to use an eye gaze AAC device for communication, uses a g-tube for his nutritional needs, and is just an absolute joy to be around!

Truthfully, as I’ve stated before, Kiran is the absolute love of my life. I am so incredibly lucky to be his mom, and I am thankful that life takes us down paths we never would have imagined asking to be on.

The Power of an Apology

A stand-alone apology holds little power. Though some power exists inside the acknowledgement of wrong-doing, it is what comes after the apology that is most powerful.

Changed behavior is the true apology.

I broke one of my own rules last night, and I immediately apologized once I realized I had done so. I know all of the reasons that built up into making that decision, and I know how to avoid the same mistake in the future.

But I also had to apologize to myself last night, for a different but related part of the circumstance I was in. And find the grace inside my own mind to offer up understanding and to gently remind myself of the reasons why I might make the assumption that I did.

Behavior tells you everything you need to know.

On Personal Responsibility

I am working to learn what is mine to carry and what isn’t. I am learning what is my responsibility and what isn’t. For so long, I have felt the need to protect others around me from what I often endured, and I am realizing that it was never my responsibility to do so – and it certainly isn’t now.

I am learning that I now have power and control in what matters most. I simply need to choose to own that and continue to work on my body learning that I no longer have to protect myself or make myself small.

Eye contact and a confident stance. I always have the ability to walk away from the situation. I don’t have to take it anymore.

And I will continually remind myself that another’s actions do NOT reflect on me. It is not my responsibility to keep someone placated and rational. The consequences are not mine, and I can remove myself from them.

Marriage Mullings

I have always wanted to be a mom. Ever since I can remember, starting at a very young age, it was a dream of mine. I never had a sense of anything else I wanted to be, but I knew, in my heart of hearts, that I wanted to be a mom.

Looking back, with 20/20 hindsight, I think my overwhelming desire to be a mom rushed me into relationships – marriages – that I should not have rushed into.

If you ever find yourself about to walk down the aisle on your wedding day, and your father (or mother, close friend, someone you love and trust) says to you “It’s not too late to make a run for it” or something along those lines…AND YOU HESITATE…do yourself a favor, and do not walk down that aisle. I promise it doesn’t matter how much money/time/energy you put into the wedding. It doesn’t matter what anybody in attendance thinks. It doesn’t even matter, though not the case with me, if you just aren’t ready for the commitment and decide to marry the exact same person a few years down the line. If there is even a slight bit of hesitation, don’t do it. Make a run for it. I find myself daydreaming about how much fun that day would have been, Dad and I running through Living History Farms (my dream wedding – my first – was at that cute chapel there) and escaping to have a drink in some dark bar while still all decked out in bridal attire.

I don’t regret the choices I’ve made, but I look back and see things so much more clearly now.

Going into the marriage that gave me my greatest gift in life – Kiran – I was really intentional. I really thought I was getting it right this time. Never having imagined I’d be a divorcee anyway (If you can believe it, I *still*, as a person who is twice-divorced, strongly and passionately believe that marriage is for life), I certainly didn’t go into a second marriage haphazardly. And I gave it too much of me. I wanted so badly to make it work, and although many still do not know all that went on behind closed doors (and it will remain that way, out of respect), I will say this: I stayed for as long as I could. I stayed until I knew, beyond a shadow of a doubt, that it was no longer healthy for me and I could no longer be the mom Kiran deserved if I stayed.

I share all this in my disjointed, haphazard way, because I have been thinking about something this week. I have been thinking about how much changed when I became a mom. Having Kiran both fulfilled my lifelong dream and completely threw me into something I could have never imagined. Being his mom is simply not the motherhood I envisioned my whole life. This isn’t good or bad – it’s just true. And in some ways – something I am also really breaking apart and thinking about – having Kiran put me in a place in life where I no longer felt rushed to be inside a marriage or partnership with another person.

I wish this wasn’t the case, and I encourage anyone reading this who has time to take the time, but I think I rushed into these commitments so quickly and missed important things about the other person because I wanted to be a mom.

And now I am, and it’s really hard, and that’s a whole other series of blogs…and this is some of the most discombobulated writing I’ve ever done….

But now I find myself in the most real partnership I’ve ever had. Eric is not someone who loves one facet or version of me. We have loved each other through some of the most amazing times life has had to offer…and some of the most difficult. He has truly seen me at my best and at my worst. There is a level of commitment in our relationship that I have never experienced before. In some ways, I tell myself and others, it’s why I don’t feel the rush to get married.

But if I’m being truthful, it may be that I am terrified to get married. Marriage hasn’t exactly worked out for me in the past.

And this is working. We are far – far – from perfect. But we are committed to each other and to Kiran.

I’m just thankful. There will be more on this, because I have really been reflecting lately due to where things are in my life right now. And I’m no longer filled with shame for the past that I’ve lived, especially if the lessons I’ve painfully learned can help someone else.

On Breath that is Bated

I apologize for not writing an update sooner. Today, I have found two things that help me start a task:

1) Avoidance of a different task I want to do even less.

2) Taking some of the pressure off and telling myself I just need to start, not complete, said task.

The dining room is finally getting its post-adjacent-bathroom-renovation scrub.

Just start that task that has been on your to-do list for months. Get as far as you get. Do it as well as your capacity allows. Consider this your permission.

You’ve got this!


For over five years now, I experience motherhood, on a set schedule, without my son being in my home. Although he spends the majority of his time in my care and in my home, every other weekend, he is with his father in his home.

After five years, I would have thought my soul would have gotten used to this arrangement. But every time he leaves, every other Friday night, I feel untethered…and not in a good way.

I feel a sense of restlessness. A piece of me feels as though I have lost my purpose.

These are feelings I am trying to explore, because that’s a lot to put on my identity as a mom/caregiver. That’s a lot for my son to unknowingly and unwillingly carry.

I have always wanted to be a mom, ever since I was a little girl. I started babysitting as soon as someone trusted me with their child, and I continued doing so until I became a mom. I was a full-time professional nanny and partner in raising humans for nine years in my twenties, and I loved it.

Being Kiran’s mom requires a lot of extra, so it does take up my time, focus, energy.

But it can’t be all of me.