I remember her, bursting into tears, unable to remember the French term the doctor had just used to describe the condition of her unborn baby’s heart.

I remember her, painstakingly measuring portions of food and taking multiple walks a day, because gestational diabetes was something she could control. A way to keep the baby safe.

I remember her, on those daily walks, preparing her mind and heart for a devastating loss because it was the only way she knew to prepare for what could be in store.

I remember her, feeling overwhelmed and alone in the early days, filling out piles of paperwork, calling countless doctors, navigating insurance and medical bills, learning new terminology, wondering all the while if her baby boy’s heart was the only concern.

I remember her.

She was exhausted in a way that’s hard to describe, a way that hasn’t completely dissipated, even now. She was determined to do right by her boy every step of the way, even when those steps felt like giant mountains blocking her path. She was resilient, armed with love, coffee, and late night google sessions.

I remember her, the day she had to let go, put her boy’s life in the hands of a surgeon, unsure if it would be the last time she’d ever see him.

I didn’t know, that first year of Kiran’s life, if we would make it to his first birthday. I didn’t dare dream we would ever make it to today. I just got to tuck in my nine year old boy for the last time. Tomorrow morning, he will wake up, and he will be in double digits.

I am bursting with joy and more emotional than I realized I would be.

Because I remember her. I am her. It’s been a rough journey but one I would never stray from. I can’t believe I’m about to have a ten year old, and I can’t believe how incredibly blessed I am to have him here with me.

I say it all the time, and I mean it: He’s the best human I know. He’s my favorite. I envy his unabashed joy and peace and go-with-the-flow attitude. I’m grateful that who he is makes my job as his mom so wonderful.

“I could never count all the ways that you change me, baby. Every day the sky is a deeper shade of blue when I’m with you.” (JJ Heller, When I’m With You)

I think it all just really hit me when putting Kiran to bed tonight. I sit here now, minutes later, tears in my eyes, reflecting with a smile, thinking ahead with a whole lotta uncertainty.

I am SO incredibly lucky and blessed that I got to be the main caregiver, a stay-at-home mom (and yes – student for many years too) for almost ten years. I only got to do this because I was willing to sacrifice things, like an actual bedroom the three years we lived with my parents. And because I had people who decided they love my son and me enough to support us while I pursued and finished my grad degree.

I am lucky. And I am so thankful.

I continue to be lucky that those same people are willing to step up now and take on some of the daily caregiving duties, like school drop off and pick up. Since my job has a rather hefty commute, I won’t be able to take that on anymore. (And while it makes me a tiny bit sad, I will NOT miss the school parking lot!)

I don’t know what my life is going to look like, being a working mama. I know that it will challenge me in ways I have considered and ways I have yet to consider. Striking a balance will be hard. Letting go of caregiving duties will be hard. I have had practice, and that will help, but this is the real deal.

I’m excited – and ready – to have something that is mine and separate from being Kiran’s mom and caregiver. I know I have written about that before, and it remains true. It also remains true that he will continue to be my priority, and I just don’t know how that will look all the time.

I suppose that’s okay, and I will find my footing. I am really happy I will get to come alongside other families and support them in their communication. Coming up with family- and child-centered ideas and strategies fulfills me in a way that’s hard to explain. I want to be a clinician who really sees these kids and really sees their families. I think that’s one of the benefits of the perspective I bring to this table.

A part of me is certainly sad, tonight. It’s the end of an era and the beginning of something new.

I really am so lucky to have this life.

I’m not sure I was ready for this. So much is already shifting in our world, with me starting work in just a few short weeks that will go by in the blink of an eye.

But man, this kid? He’s growing up. And while so much of our lives is atypical and different, and my motherhood is just – more – there are some things that are the same.

Like – I had to buy Kiran deodorant this week. Not something that was even on my radar, until it had to be. Ugh. He’s getting so big, and it was time. Thankfully, like so many things in his life, he has been completely unfazed by this change.

He is choosing more alone time. While he has always sometimes chosen to have alone time when given the choice between that and hanging out with me, he is choosing it more often now. Very typical. A little heartbreaking.

But today – today, Kiran was baptized. This has been a long time coming. When he was an infant, he was baptized in his father’s religion because it was required for him to even attend religious gatherings within that religion. I have wanted to get him baptized in my faith – Christianity – for awhile. Barriers existed that I won’t get into because it isn’t a relevant part of what today held.

Today, friends and family gathered with us, attended a church service with us, and witnessed his baptism. We all celebrated afterwards with lunch at our house. It was meaningful and beautiful, and I couldn’t have asked for a better day. Kiran did fantastic – it was a “scoop and pour” baptism, and he flinched a bit with the first bit of water but engaged in the rest of the ceremony like a champ. I am so thankful it was on the end of his week at Vacation Bible School, because he was surrounded by the music, the love, the community of our church all week.

It was so important and so, so good. It amazes me, sometimes, to see him coming more and more into his own independent self, because it’s always existing in juxtaposition with his care needs. It’s a new phase of parenthood and a learning curve for sure. I’m here for it, and I am so thankful we have so many people along for the ride loving on and supporting him – and us.

I will be honest: I do not yet know how the bill that was passed yesterday will impact my family. What I do know is this: Medicaid is more important than many people realize. Cutting Medicaid not only impacts families like mine, who include disabled and medically complex children, it will also impact families with few resources, medical professionals who rely on Medicaid payments to keep their practices afloat….the far-reaching implications of this will in no way be positive.

I will give one example of how Medicaid provides help/support but in no way gives families like mine a total free pass handout. And I would argue the supports should be greater, because the expenses are still great even with the help it provides.

When Kiran was born and still in the hospital being monitored for his heart, I filled out a huge form to have him put on the Health and Disability Medicaid Waiver Waitlist.

He turned two years old before a spot on that waiver became available.

The waiver provides things like respite care, where we can train people on Kiran’s cares, allowing us to have a break from the 24/7 caregiving his condition requires. It also provides a certain amount of money every year for necessary vehicle and home modifications required to safely care for him at home.

Many of you reading this already know the story of the vehicle modification we completed for Kiran last year. I was transparent about the financials involved in this undertaking. The total cost of the vehicle modification was essentially the cost of the vehicle itself: $40,000.

Do you want to know how much Medicaid covered for this project? About $7,000. Leaving $33,000 for our family to figure out how to come up with.

And since then? Because our vehicle doubled in value, our monthly auto insurance cost also doubled. There is no financial help for that; it is just one of many additional expenses families like ours have to cover. We don’t have a choice.

Through no fault of ours, Kiran just happened to be born special. With a very rare genetic condition that makes him who he is, and who he is just requires more: More care, more attention, more therapies, more medical specialists, more equipment for daily life activities.

He’s expensive. We have been so thankful for the Medicaid waiver and having Medicaid as a secondary insurance for him (Yes, we have primary insurance, too!). I’m not sure how that will be affected for families like ours with this bill, but I do know this: If we lose Medicaid, we are unlikely to be able to stay afloat financially for long. Even with family/friend/community support, even with being financially prepared with decent savings. Just getting the equipment Kiran needs to eat every month would cost $300.

So.

If you are reading this and you don’t believe healthcare is a fundamental human right. If you are reading this and you don’t believe that my son is fully human and, without question, should have access to the best medical intervention, therapeutic intervention, and equipment needed to maximize his quality of life.

You can stay. Please keep getting educated here, if that helps. But forgive me if I choose to no longer put effort or surround myself with people like you.

Right now, I need to be around the people who value my child’s life, health, happiness. And believe we shouldn’t have to go bankrupt to cultivate the best life for him.

Kiran had his regular cardiologist appointment today. For me, it was probably the most beneficial outcome I could ask for, save just a completely stable heart which I knew was unlikely.

He did amazing, as usual, with his echo and EKG. We got to meet the daughter of a former echo tech who we absolutely adored, and the apple didn’t fall far from the tree. During his echo, Kiran got to sit up for parts of it, take a good look at the screen showing his heart, and even “help” by holding her hand. Her calm demeanor and patience with him made the whole experience better.

Dr R let us know that Kiran’s pressures are slowly rising. The last few appts have been in the 40’s and now they are jumping to the 50’s. Also, his last cath was apparently in 2017 (time flies), so it’s not a bad idea to get in there and see what they can do to better the situation.

Long story short: Kiran’s test results are indicative but not urgent or emergent that it is time for the cath lab in the next year. Dr R is hopeful they can do some ballooning and/or stenting to buy us time to get through his teen growth spurt before needing a valve replacement. This could potentially mean only one more open heart surgery, if we can hold off needing it until he’s essentially in his adult form.

After multiple questions about the strength of the cath team currently, the doctor’s comfort level with timeline decision, recovery, risk, and restrictions following stent placement ….

We tentatively decided to wait until next June to go to the cath lab. We will be checking back in with cardiology in six months, so if anything drastic changes, that timeline will also.

But having this time to plan and process will be important for our family, especially as I am jumping into a new career and Kiran is wanting to live his best life this summer.

Since his heart can’t just be forever fixed, I’ll take non-urgent news and time to process and plan to move forward.

I wish I could understand the stories you tell yourself.

The narratives you must write, so far detached from the reality in which we are living.

I will never hold regret for loving you once. It was genuine on my end. I know, now, that it never was on yours.

But you gave me the greatest gift, so I can never regret.

The best part is this:

You have no power here anymore.

I am no longer under your control.

Being a human is so weird.

Tonight, Eric completely caught me off guard by throwing me a surprise graduation party. I was blown away by the people he thought to include, the people who took time out of a random Wednesday night during a busy season to come and show me love and celebrate my accomplishments.

I didn’t know speech language pathologists existed prior to Kiran. His journey, both with communication and feeding, has been long, difficult, triumphant, and disheartening. I can honestly say that I would have never gone back to school and pursued this career path had it not been for him. His journey inspired me and made me passionate about this field.

Along the way, somehow, I recaptured parts of my own identify, separate from motherhood. I made connections with peers in my cohort – lifelong friends who struggled and encouraged right alongside me.

This has not been an easy path.

I have to, first and foremost, thank Kiran. Buddy, who you are as a person has made me better. Your birth significantly separated my life into a Before and an After. I could write an entire book series on this, but people may just have to read my blog from the beginning. Truth: I wouldn’t have it any other way. I am so lucky to be your mama. I will advocate for you with every breath for the rest of my days, and you have inspired me to advocate for others like you that need to find their voice and their place in a world not made for them.

Eric. You have had me at my best and worst in the past several years on this academic journey. Through it all, you have stepped up and filled the gaps, supporting me in both logistics and emotions. Every time I questioned my abilities, my worth, my sanity…you were right there to remind me who I am and why I was on this path. I would have never completed this degree if you hadn’t been by my side doing whatever it took. Thank you for supporting me in all the ways.

My parents. Sometimes I wonder how I got so lucky. Just like parenthood has not been the journey I always dreamed of, your grandparenthood…well, it’s a lot. You always step up in the ways you can. Your love for Kiran – and for me – has been invaluable. I have relied on you to help with Kiran care regularly in the past year for sure, and you have always made the trip to Eau Claire with enthusiasm. Thank you for encouraging and celebrating me.

All of Kiran’s respite care providers: you have been invaluable. You have given me the time and space to study – or to escape caregiving duties. One in particular has been waiting for her shout-out, and I have to give it genuinely: Baylee, you have regularly been in our lives every week for almost three years. You have been an integral part to helping me maintain my sanity during grad school, and I can honestly say I wouldn’t have survived without your help and exceptional care of Kiran.

To my cohort: oof. We made it. I cannot count the many times we held each other up when we weren’t sure we could actually write another reflection, complete another project, find another placement…. When I wanted to throw my hands up and quit at one very poignant point, you all reeled me back in with your empathy and encouragement. We can do hard things. We did this, together.

My very last day of my clinical placements is tomorrow. I will walk away with the 400 hours I need for my licensing. I graduated a week and a half ago. I have a job lined up, the job I envisioned when I started this journey. I feel so incredibly blessed and so flabbergasted that I’m actually here.

Ultimately, to myself: You are a badass. You did this. The incredibly hard thing, juggling so much, letting go of so much, allowing others to step in and support. I have learned so much, grown so much, and ultimately changed the trajectory of my life. I did this.

I am a Master.

Here is something I have been thinking a lot about lately: I wish we could all sit together.

Although almost everywhere we go – movie theaters, church, baseball games, concerts, etc – has wheelchair seats available (which is amazing; don’t get me wrong!), they often have ONE companion seat next to the wheelchair seat.

It all started with our Christmas eve service fiasco this year. Even if we were able to get a wheelchair spot, we wouldn’t have been able to all sit together as a family – and there were only five of us in attendance. And then, when I had to order tickets to my upcoming graduation ceremony, I had to send an extra email to ensure we could have a wheelchair seat…and guess what? Eric will get to sit next to Kiran, but my parents will have to sit elsewhere, because the wheelchair spaces are reserved with only one companion seat.

So for these big, and sometimes monumental, events, when it’s so important and valuable to experience it together as a family, ours is disjointed. The logistics of our situation make it necessary for us to not be together.

And it sucks.

I don’t have a solution. Honestly, I don’t even have super great ideas for a solution in most settings (Other than, for the big church services, they could dedicate the entire wheelchair row to families of wheelchair users without much difficulty for others), but it does suck. Not only is it typically an extra step to figure out accessible seating in most situations (an extra email, a phone call that could’ve been an online reservation, an earlier arrival time, etc), it often means we have to give up togetherness.

Kiran has a new case manager for the health and disability Medicaid waiver he is on. This is someone we meet with monthly (one month is a phone call; next month is in-person meeting; so-on) to check in, make sure the services we are receiving are working out for us, and make any necessary changes to his care plan. Friday afternoon was the first in-person meeting with this new case manager.

I don’t like her.

While it is true that I really liked Kiran’s former case manager and as a general rule don’t deal well with change, it has nothing to do with that. There were three moments in our conversation that let me know two things about her:

1. She doesn’t value disabled people.
2. She feels sorry for me.

Why in the world this is her profession is beyond me.

So – what happened?

She asked me if Kiran was my only child. When I said yes, this woman responded with “awwwwww” with a very sad intonation, as if that was a tragic thing. I was so shocked by that unprofessional response, I just shook it off. After all, it’s not the first time someone has felt sorry for me. So many people just don’t get it.

Then, I followed up with my usual (and I’m paraphrasing here): “Actually, my fiance has two grown daughters that I also claim as my own, but they were older when we got together, so it’s weird to think of myself as a stepmom”…I started to try to share with her about my grandkids, but she was too busy interrupting me to tell me what a WONDERFUL man Eric must be. “Most men wouldn’t be willing to take on a child with special needs…..” She went on for a bit, and I don’t remember what exactly was said, only that the word “burden” was used.

Guys. I know I talk about how difficult caregiving can be. I know that sometimes I throw myself pity parties. I know. But let me be clear if I haven’t been before: Kiran is NOT, nor will he ever be, a BURDEN.

Of course, I shook this off too. Holy cow, so many people like to tell me how amazing Eric is for being with us, because of Kiran. Eric is amazing, but he will be the first to tell you that Kiran provides him with so much joy and love, and he is actually the lucky one in all this.

Neither of these was professional or appropriate for the context we were in. I was willing to shake them off, give her the benefit of the doubt, move on.

But then, with my son sitting next to me in his wheelchair with me holding his hand, this woman had the audacity to try to commiserate with me about her daughter who was born premature. She told me how they spent months in the NICU, how scared she was at that time, how the doctors were saying her daughter would “have trouble walking, have trouble eating”…and how she didn’t have trouble with any of it! And how GRATEFUL she is for her daughter’s health.

…….

…………

…………………

If I would have had this meeting a few years ago, I would have left a sobbing mess. Thank God I have had nine years on this grief rollercoaster and have a solid sense of just how valuable and amazing Kiran is. Thank God that though I always hold fear in some capacity, I am currently not in a state of life where I am fearing some major health concern with Kiran.

Can you imagine if I was a brand new mother just learning of the specifics of my child’s diagnosis, and this had happened? Or if I was currently in the middle of fighting with insurance for my child’s very first wheelchair, deep in mourning that my child still isn’t able to walk?

I wish I was a person that didn’t shy away so strongly from uncomfortable, confrontational encounters. I have gone over and over and over what I wish I would have said to her. But I just did my awkward thing, completely in shock, and wrapped up the meeting as quickly as possible.

I am not contacting her manager because I want to get her in trouble. I am sure that it was her way of attempting to form a connection, but it was so completely misguided. Depending on how the conversation with the manager goes, I will definitely consider writing to her directly to express my feelings and concerns with her interpersonal skills.

Because I want to protect the other families who may be in a more vulnerable place than I am right now. Because we all deserve to work with people who value our children.