I am an advocate for awareness and inclusivity.  Just coming out of heart month in February, I spread awareness for Kiran’s congenital heart defect daily.  His CHD is something I have fully embraced as part of who Kiran is, and I am vocal about it.

I realized, when a friend sent me something pertaining to one of Kiran’s brain abnormalities, the same cannot be said for that part of Kiran.

The reasons are plentiful.  Kiran’s heart defect is something I found out at 22 weeks pregnant.  I had time before he even arrived on the scene to learn and get comfortable with that.  I am in a great support group with other heart families who know, as it is related to CHD, the path I’ve walked.  With his heart defect, there was a clear plan in place.  Surgical procedures outlined – there was knowledge and a sense of where he needed to go with it.

The brain abnormalities simply aren’t that easy.  Though they do not have the same potentially life-threatening outcome the heart stuff has, they do alter his daily existence far more.  At least in the last few years.  I didn’t find out, with certainty, about Kiran’s special brain until May of 2018.  I haven’t even been sitting with it for a year yet.  I haven’t been able to connect or plug in with other families – nor do I even really know of any – that have similar brain stuff.  There is no clear plan.  Not only is there nothing to be done about Kiran’s brain, but no doctor can even tell me what exactly it will mean for Kiran.

Limbo is a place in which I have always felt uncomfortable.  Always.  And limbo is a place in which Kiran forces me to live, every day.  I know he will not be a typically developing child, but I have no idea at what point his skills will plateau.

It’s a really hard place, for me.  And I am in the headspace, now, that I know I need to sit with it for awhile.  Grieve, for awhile.  Then, acceptance will come.  It always does.

I will never understand why some days, for no tangible reason, just feel harder than others.  I am so emotional today about my life with Kiran.

School drop off and pick up are just lonely.  I struggle already with being an outgoing person, so I have to be in a certain headspace to force myself to initiate conversations.  I still do it frequently, but it doesn’t come easily or naturally.  And it doesn’t help that most of the other parents – moms, especially, which I find interesting – have put a bubble around us.  It’s like we have the plague, and they are worried Kiran is contagious.

My brain tells me they just aren’t sure how to interact with us.  I also don’t know how to bridge that gap, so understanding it doesn’t make it hurt any less.

I also grow cynical and wonder why I should even bother trying.  I don’t have any other children; no neurotypical children with which to find common ground.  I am Kiran’s mom only, and it’s my only experience being a parent.  I have next to nothing in common with the average parent of neurotypical kids.  If conversation ever went beyond the damn weather, I’m not even sure I could contribute.

Adult friendships are hard anyway, and I find this to be continually exhausting and painful.

I had an appointment today, and my esthetician, who usually simply leaves it as “How is your son doing?” decided to go deeper.  She asked if he communicates with signs.  So I explained where we are with his communication skills, which is also a difficult subject.  It’s hard to help someone who doesn’t know him at all or have any concept of his life so far understand who he is.  It’s painful for me to talk about his lack of communication ability.

And today was one of those days, at preschool pickup, watching all the other kids running to their parents, yelling “Mommy!” or “Daddy!”….I have just been on the verge of tears all day.

My absolute saving grace in all of this is I know these are my struggles.  They belong to me.  Kiran doesn’t struggle with these things.  He is happy to be around his classmates.  He has a few friends who play with him often, and the classroom environment is very inclusive.  He doesn’t seem to grasp – or care – that he is different.  He is happy, and he is loved.

Ultimately, that’s what matters.  I’m doing something right, even on the days I feel like I do everything wrong.  Even on the days that hurt like hell.  Even on the days I just wish our life could be different.

He is happy.  He is loved.  It’s a long road ahead, but we journey together.

 

I came away from Kiran’s GI appointment with more knowledge about granulation tissue – and with confirmation that is what we are dealing with, and it has moved on to the scarring stage. No other answers really to be had – why now, how to best prevent – we are doing what we should be. The granulation tissue is just his body’s way of healing what it perceives as a wound (the “unnatural” hole where his g-tube is placed). I know better what to look for, how to act, and when to be seen again. It was a constructive, productive appointment.

Swallow study. I have such a complicated response to it today. I realized, coming out of this appointment today, how much I let Kiran’s dad’s emotional reaction at the last swallow study affect me.

Our local feeding therapist made it, and I have thanked her immensely, both in person and immediately after via email. It is not lost on me how amazing she is, and as stated before, I will never take her dedication for granted. It was helpful to have her eyes on the study. She knows Kiran so well.

Kiran did great. He gave us a really good picture of what is going on. And it confirms what we learned the last swallow study. He needs to be on nectar thick liquids. He is at risk for silent aspiration with anything thinner. He also has some mild risk with crunchy/mixed textures, mainly because he likes to hold and lose them in his mouth.

Nothing changes. We continue on the path we are on. We offer only thickened water, purées, and meltable crunchies at home. And we need to get back in the habit of using his chest strap in his wheelchair while feeding him. We shouldn’t have ever stopped, probably, but sometimes those extra steps (he has so many) seem extra tedious when you’re unsure they are making a difference. It does. The swallow study showed us the difference his positioning makes.

So. Okay. Here we are. Still.

I feel I have come to accept that his g-tube may be a permanent fixture. This isn’t to say I’m giving up or we are stopping therapy – he is making progress, and we go where he leads. It just means I’ve made my peace with it. I can’t keep riding the emotional rollercoaster and putting all this pressure on meal times with the end goal of getting the g-tube out.

It’s just not my end goal anymore. If it happens someday, I will celebrate BIG! In the meantime, my goal is to just help Kiran safely enjoy food. That’s it. Whatever it is. One bite or 100, purée or someday actual bites of steak – whatever it looks like. Sometimes it means blending Oreos and milk and giving it via tube, because that’s a safe way to experience cookies and milk with my son.

I am okay. I am glad to have answers. I am thankful he took bites and drinks and swallowed so we could see what was going on clearly. I am glad we can continue to keep him safe.

It’s a long road ahead, but we journey together.

We had such a lovely two month reprieve.

On the road again, headed to a GI appointment to discuss granulation tissue. Kiran’s site doesn’t look concerning but the tissue is still present – we just have zero experience with this so hoping to educate ourselves today in general. Really hoping we don’t have to use silver nitrate to burn it off. That simply doesn’t sound fun for anyone involved.

The real dread has set in for our second appointment of the day: a swallow study. The last one did not go as expected, and we had to take some significant steps back in oral feeding.

I continue to be in awe of the amazing team we have in place for Kiran. His local feeding therapist, who has been working with him for the past two years, insisted she wanted to be present for this swallow study. She wants to be a more comforting presence (since Kiran knows her so well) and an extra set of eyes for us. Here’s the clincher: She is on maternity leave and traveling to Iowa City with her newborn. For Kiran. This was not something we asked of her or insisted upon.

Kiran’s team cares, and it blows me away. I am thankful and will never take it for granted. Some of the members fell into our laps; others we worked hard for – ALL of them are dedicated and passionate about what they do. They go the extra mile, and I am so amazed and humbled and grateful.

Kiran is so, so loved.