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.