What Could Have Been....Rare Disease Version

As our son grows older there are different phases where the "could have beens" hit a little harder. Where I see those who were his peers achieving what at one time was possible for him, but no longer is. There is grief that comes with a rare diagnosis for your child. While not the same as the grief of losing a child, it is grief nevertheless. And I feel that getting this diagnosis of Addison's Disease on the cusp of being a teenager was the hardest time to get it. He (and we) had a vision of what life was going to be, dreams of a future, that came crashing down around us. And let me take this one moment to say I am forever thankful that I still have my son and that I realize how that grief would be at whole different level, but I feel it is important to share the grief as I feel it in the phases of life.

We live within 10 minutes of a large college campus and drive through it fairly regularly. Yesterday morning our son had an early morning appointment for a possible new diagnosis. It is an appointment that we had waited for, that I had anticipated for a long time and that brought with it all kinds of feelings. We want a name to what our son is feeling. We want answers to explain what is going on inside his body. And, of course, we want to know if there is anything we can do to help his quality of life. You see, now he is on the cusp of adulthood, and just like when he was given the Addison's diagnosis and his life took a turn we are right now faced with a lot of questions, decisions and unknowns.

Back to the campus near us.... Our appointment yesterday took us through the heart of campus shortly before classes were starting. As I drove through, I glanced in the passenger seat at our son. He is older than many who I saw walking to class. In some ways he has lived so much less than them and others so much more. He was up for this appointment earlier than his body typically allows him to function and his morning meds were not quite in his system, so with seat reclined to laying and wrapped in a blanket, I stared at our youngest and for a moment let myself grieve what could have been...

I saw young men and women walking to classes ready to fill their heads with knowledge and experience life as young adults. Next to me was our son waiting to hear if what one specialist believed to be happening this specialist would agree with and continue to investigate. I saw "kids" walking carefree to join others for coffee and chat to begin their days and there our son is, doing most classes online because the in-person experience is too much in many ways. For these students on campus tests in the classroom require studying and preparation, we left the appointment with a schedule of tests, but the prep for them was which medications he can take before which tests and how long before them he has to go without food....what could have been...

I remember feeling these feels before since the diagnosis of Addison's Disease. I felt them when his teammates kept playing soccer at a high level and our son was slipping down a level each year. I felt this watching those same teammates commit to play in college or choose not to play in college - at least they had a choice. The worst for me was high school graduation - where I completely disconnect from social media because my heart broke that he would never walk across the stage - he did graduate from high school, but was homeschooled. And now here we are again.

And I will say a million times how fortunate I know we are that he has a rare disease with a treatment (95% do not). That the treatment that he has does not come at astronomical costs that have forced our family to make hard sacrifices financially. That my husband's job has provided good insurance and the opportunity for me to be a caretaker for our son and volunteer to give back to organizations that have given so much to us. That we have had doctors that work with us for what is best for our son physically and emotionally and truly care for him.

And lastly, I thank God that our son is currently doing quite well where he is at - I will never take that for granted for a minute. He is in community college and we are taking him on spring break this year!! He will turn 21 in a few days and we are excited to celebrate (responsibly) with him. He is working a few hours a week. And more than anything else he has told us in the last few weeks that he is happy. Isn't that the ultimate goal for our kids? I will trade all that could haves, would haves and should haves - just to have him happy with where he is and who he is. We have fought hard for that, he has fought hard for that.

If you are a caretaker for a child or young adult who has a rare or chronic illness, can you relate to this? The happiness of where you are, the grief of where you could have been, the bittersweetness of watching peers.... Please feel free to share your comments on the blog post where you read this on social media or my website. Thank you for being here.