IFSP Meetings + The Soul

Today was hard.

It was one of those days where we sat in a room around a table and said these horrible things – things that I am so happy that you weren’t around to hear.

We talked at length about your weaknesses, the areas where you struggle, and the “problems” that you have. I want you to know that I talked about how much I love you, too.

Your dad and I talked about your development, how it’s been slow and how a lot of things are difficult for you physically, even though we know that you try so hard.

I mentioned your anxiety and sensory processing issues and how it makes interactions hard for you, and my worries surrounding your future. My heart knows that you’re capable of great things, though, I promise you that.

We were asked about your behaviors and used keywords like “clinical” and “atypical.” I cringed a lot, but I hope you would be proud to know that I held my own. Your mommy did good.

It’s hard to have these meetings, and I don’t know if it’s good or bad that I’ve gotten used to these conversations – the ones that I’m not proud of. But, I do this because my love for you is stronger than I could ever describe. I would do anything to help you to succeed, to give you the life that you deserve.

Sometimes, this means that I must do hard things, like point out your struggles like I don’t see your strengths. Just because I’ve gotten used to this, doesn’t mean that I like to do it.

In meetings like this – the eligibility hearing for your CPSE – honesty is very important, but it’s one-sided honesty. I have to be truthful about disabilities, delays, and my concerns for you to get you the resources that you need, but I don’t get to say enough about how amazing you are.

You are not your weaknesses, impairments, or disabilities. You are not a statistic or a number. You are not your circumstances or trauma. You are not “clinical” or “atypical.”

You’re a bright spot in a dark world.

Your laugh is infectious and dries even my wettest, tear-stained cheeks.

I think that you’re hilarious. You know you’re extremely funny, too, and it shows.

I love your love for superheroes and how it shows up in all that you do.

Your strong-will continues to impress me, day after day, even when it’s the thing that causes me frustration. The world needs more of that.

You love any type of music and even when you’re tired, you’ll still dance.

I’ve never met someone as curious about the world as you are. I hope you never lose that.

If I could spend one minute in your imagination, I’m sure it would be better than most movies.

If it weren’t for you, I would never have found my voice. You’ve taught me what it means to be an advocate, a better person, and a mother.

So at the end of the day, I want everyone to know that while I’m responsible for making opportunities and support available for you in this world, you have shown me the world in different ways and made me aware of what it needs to be.

Today was hard. We will have a lot more days like this, but on these days, we move mountains. We do hard, painful work, but then we come home to each other and continue to live the truth that we know: that you are not what is written on paper.

Underestimated Strength is a collection of posts all about our journey through life as we navigate preemie parenting after the NICU. You can read my posts here every Tuesday! Also, feel free to follow me on my website, where I speak freely about our story and advocacy.

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