Our eldest graduated last week from high school-online public school. Because the online public school was not hosted by a local school district, we traveled two hours to the graduation celebration held at a convention center.

It was okay. Our student got to meet a couple of teachers that were very impactful during her high school years and it was great to get to see them in real life. There was a slide show, but somehow we missed our student’s slide. The food ran out about a half hour into the event. There was a staged area for taking photos but no professional photographer. We stayed about an hour. It was a milestone in a sense, and I hope our teen looks back on it fondly, but truthfully the following day’s trip to the local zoo felt much more festive.

I can’t stop thinking of other families like ours during graduation season. It’s the time of the year where graduation announcement lawn signs go up in the colors of the local high school, social media is flooded with posts on kids’ accomplishments and their “lasts”-a football game, prom, dance recital, a club.

For us, there were no “lasts” really because there were no “firsts”.
There is no grad party because, frankly, there is no one to invite.

For families like ours, the milestones look far different. For many, it might be that your student passed their GRE and can now move on. For others, it might be a medically-related milestone–for example, we do not need another kidney transplant before she turns 20 like we thought. For others, the milestone may be that your student learned a life skill that will benefit them greatly moving forward.

I want to take a moment and celebrate our kids.
And us!
And us.

First of all, our kids are resilient.It is a descriptor that can often be misused to brush off the impact of trauma because being resilient often means there are some pretty monumental obstacles that need to be overcome to build up that resiliency. Whereas I do not wish the need to be resilient on any student, I am in awe of our kids and how they navigate situations they should never have to encounter with such courage. They are such an underestimated population and yet, they are among those that I most admire. When I watch my daughter’s empathy grow and therefore her deep care for those around her and her unshakeable desire to make the world a better place, well, I am inspired. Our kids have had to fight so hard to survive in a world that was not created to accommodate them. And as a result, they have become world ambassadors of strength and compassion and the very best humanity has to offer.

The main cause for celebration, however, is you.

Our daughter has a very rare disease. Therefore, there is not a parenting book in the world that could prepare me for how to raise her. And then, there is the full-time job of keeping her alive.
Raising our kids has meant many, many micro-readjustments in our daily lives. It has meant so many appointments-my GOD the number of appointments. It has meant phone calls (or let’s be honest-being on hold forever), looking up how to prepare special types of meals, finding unique ways to make accommodations in the home and/or in the school, and then there is the worry.

The worry is what has caused the migraines or the neck issues or the back strains. The worry is what has caused many, many sleepless nights. It is what has often caused some, ahem, disagreements between partners. It is what has doubled our lung capacity over the years from holding our breath in anticipation. 

Raising my daughter has been excruciatingly lonely. I am grateful for the community we have surrounding us and that has loved us so graciously. And I am also acutely aware of the many, many times I have let someone down because how could they possibly understand what it is like for me daily? How could they possibly know that I, too, am sad that I had to cancel last minute or that I cannot join in a certain Girls Night or a Book Club because I am literally drowning in a sea of needs of those I am responsible to care for twenty-four hours a day? There are so many sacrifices we all have had to make in order to raise our kids. Those sacrifices take a huge toll on our physical and mental health and very often it goes unrecognized by those around us.

So, to the parents and guardians of medically-fragile graduates-
I celebrate you.
I see you.

So often, our worth has become so deeply enmeshed with that of our kids that sometimes it is difficult to separate one from the other.

I am linking arms with you and I hope with all my heart that we can take one deep, long exhale and allow ourselves a few moments to acknowledge all of our successes. It is important to take the time to not only celebrate how far we’ve come but to also relish in the beauty of the unique world we have created. Our milestones may look more like uneven cobblestones, but they are no less worthy of celebration.


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