Sometimes, I grieve the motherhood I will never get to experience.

While waiting to pick Kiran up from school today, the preschoolers were coming out to their parents. One was particularly enthusiastic about seeing their mom, joyously shouting “MOM!” and running into her arms.

Without warning, tears welled up in my eyes.

But, there was also a smile.

I may never get to experience that particular expression of love from Kiran. And I have to feel those feelings, because they are valid. The motherhood I always envisioned was one in which my child would make a beeline for their mama’s arms while excitedly screaming my most beloved title: “MOM!”

Kiran was wheeled out the door by one of his associates, and he was smiling. We walked to the van where he waited, content (more so than me), for the chaos of after school pickup (and the vehicle parked behind us) to disperse. He came home, exhausted from his day, and wanted to snuggle. And so we did. And we read books. And we had dinner, and he used his communication device to say a few things which seemed really intentional (and we always treat them as if they are even if). And then (after all the other cleaning up and after dinner happenings), I did something I have been doing lately, the last two Mondays actually: I turned on his music and his stars and climbed into bed with him to snuggle and talk and watch his stars.

I could have never imagined this motherhood. I had never really seen instances of it, so how could this have been the dream I had for my life?

And it’s hard…but it’s Wonderful.

I am learning to refer to Kiran as disabled.

Whenever I am able, I listen to disabled adults who are willing to share their experiences. Overwhelmingly, I hear that they want to be referred to as disabled – not differently-abled or special needs or handi-capable – their perspective, as people living with disability, is that these terms are to make able-bodied people, like myself, more comfortable.

Disability is not a bad word.

I listened to a TikTok the other day that is still bouncing around in my brain. A disabled content creator who I have learned a lot from was talking about how able-bodied people seem to always see disability – any disability – as a loss, as something to be grieved. And it doesn’t have to be, and in fact, isn’t always. In this instance, she was referring to the absolute joy a deaf/hard of hearing family experienced when their second child was also born with a hearing impairment. So many people didn’t understand why, even though the family shared explicitly it was because they would be able to have a shared culture and life experience.

But – at Kiran’s parent-teacher conference yesterday when we were talking about his writing goal, his amazing special education teacher made the comment that she sought guidance from another educator/consultant who has experience with people with significant disabilities.

I’m not going to lie. “Significant disabilities” was a punch to the gut. It hurt my heart.

But why?

It’s an accurate description of Kiran. It isn’t all of who he is, but he is a child with significant disabilities. It doesn’t change or negate anything else about him. But my internalized ableism is a work-in-progress, so I still have these reactions sometimes.

And I think that’s okay. Or – at the very least – it’s honest. I am learning. And I am practicing. Until Kiran is able to advocate for himself, I want to be the best advocate I can be for him, and that requires learning all I can from those who live with disabilities. I may be in close proximity to it as Kiran’s mom, but there is so much I don’t know, not having the lived experience.

Two weeks after Kiran’s first anatomy ultrasound, he had a second, more extensive ultrasound. I was by myself that day, because so many had reassured it was nothing to worry about.

It was the day I first heard the words “Tetralogy of Fallot” … only I didn’t retain those words. Best I could say was it was something that sounded French. I was in such shock.

Thankfully, they didn’t make us wait long. We had an appointment the very next day with a wonderful specialist who explained the diagnosis to us and had encouraging words about the survivability of the condition.

Later in the pregnancy – and confirmed after birth – two more heart diagnoses were added, just to make things interesting: pulmonary atresia and major aortopulmonary collateral arteries (MAPCAs).

Kiran’s full heart diagnoses, then, is made up of three separate conditions: Tetralogy of Fallot, Pulmonary Atresia, and MAPCAs.

Tetralogy of Fallot alone has four defects associated with it:

1. Ventricular Septal Defect (VSD) – a hole between ventricles (the pumping chambers) of the heart. This causes oxygenated and unoxygenated blood to mix.
2. The aorta, which is usually above the left ventricle, is to the right and directly above the VSD. This means both oxygenated and unoxygenated blood are going out to the body.
3. Thickening of the right ventricle wall. The right ventricle is working hard to pump blood out to the lungs through smaller arteries. What happens when you work a muscle? It gets bigger.
4. Pulmonary valve defect – In Kiran’s case, pulmonary atresia so more severe – His pulmonary valve didn’t form at all. Typically, this means blood would have no pathway to get to the lungs.

That’s where the MAPCAs come in. They provided a different pathway to get blood from the heart to the lungs to be oxygenated. This is what allowed him to remain surgery-free until he was 10 1/2 months old.

Both Tetralogy of Fallot and Pulmonary Atresia are listed on the CDC’s list of critical congenital heart defects, meaning heart defects that require surgery or other procedures in the first year of life. But it was his MAPCAs that took us all the way to California for a specialty surgeon.

But that’s another story.

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!

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.

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.