The moments that make you think.

Parker has been doing this thing for the past couple of months where he wants to take a nap – well, he wants US to take a nap, with Willow in the “big bed” (my bed). I’m not going to lie, after 22 years of this boy not sleeping, I’m all for a nap whenever I can get one! It’s been a nice adjustment to many of our days.

It also means that I slow down. I’m not given an option but to stop during this time. Stopping isn’t something I do easily, or, honestly, something that I do well. When I do, the million tabs that are open in my mind constantly running to-do lists and ideas through my mind laser focus on one thing – that sweet young man laying across from me, on the other side of the 90-pound dog.

As I lay there in the dark (I have room darkening curtains, it is dark!), with my eyes adjusting to see the sweet silhouette of his face as his sleepy eyes fight to stay open with blinks that get longer and longer until they stay closed. As his eyes close, warm tears flood down my cheeks from mine, this is what happens when I stop. I look at him and think of all of the things I wish I had done for him. I think of the wisdom I have now that I wish I had when he was little. I think of everything I wish I could have known to do and wonder how much different his life would be today, or would it? I’ll never know.

Through my tears, I don’t see a 22-year-old young man, I see my sweet young boy. I see his innocence; I see the world differently and I can’t help but wonder… have I done enough?

I wonder if I’ve prepared him enough for the next phase of his life and how much COVID has set us back on that plan. (Our timeline remains the same, he’s just much more attached to me after a year and a half of being joined at the hip, so we have some independence to make up.)

There is time. I remind myself there is time but with each passing day, we are one day closer to this new chapter in his life. In my life. In our lives.

I wonder what our lives will be like when I’m not here to care for his every need, every day. While I hope that I will have him prepared for that, have I prepared myself for what my life will be like? And what will it be like? Besides being extremely quiet. And will we be ok? In all fairness, will I be ok?

I am sure that all parents go through this when their children leave the nest, but as a special needs parent, my nest is a bit different than some. While my friends in the special needs community can relate, my friends who are not but have watched their children move onto the next phase of their life never were in my position where someone depended on them 24/7 to get through their day. Parker will always need assistance, a round-the-clock caregiver, and I have to come to terms with the reality that at some point that won’t be me. And that some point, is just a couple of years away.

Being a special needs parent truly defines you. While I have my own identity and Parker has his own, we also have our identity which is a big part of who we are. While some people can’t wait for the moment when they let go of that part of them, I don’t know many special needs parents who do so easily. It brings a new level of trust in his caretakers, his roommates, and the people in the community that he will interact with. He will be walking through this world without his mom’s laser beam eyes providing a warning for anyone who starts to look at him with anything other than respect. No matter how much someone else loves him and cares for him, no one (except maybe his sibling) can give that look that reaches deep into someone’s soul as a warning as I can.

This next step will be important for him – and for me. As I’ve talked about many times, our magic age for Parker was always 25. At 25 we would be sure that he was living as independently as possible. I have that plan and we are working towards it. It will give us both time to see that he can happily and successfully live without me, which is important. One of the worst things that could happen to Parker would be to only know living with me and lose me. It is important for him to learn that he can be successful on his own and it’s important for me to see him succeed. I’ve heard the horror stories of special needs adults who only know life with their parents and then lose them – and in turn, their entire world, and the unbelievable stress, confusion, and regression that brings for them.

I focus so much on the plan and everything that I need in place, it is only when he makes me stop that I look at my sweet, innocent boy and wonder if I have done enough. I’m not asking for people to flood me with “You are such a good mom” comments, I know I am a good mom. I do the best that I can and that comes with success and failures. As we lay there and I watch him drift off to sleep over the sounds of Willow’s snores, my mind focuses more on the failures. Mostly the failures that were out of my control as I simply did not know at the time everything that I do now.

As those hot tears stream down my face, I quietly apologize to him for everything I didn’t know, for the challenges he faces, for the difficulty of his life and how very much I wish he had the opportunities of his friends to simply live without Fragile X. He deserved a life better than what Fragile X gave him.

Life kind of stinks in that way, so much of the knowledge that you need when your kids are younger, you don’t learn until they are older. In our world, they are always learning and discovering with Fragile X, new techniques for working through challenging behaviors are shared, and the accessibility to those who have walked this path before us are so much better thanks to technology.

It is part of the reason why sharing our story, our challenges, and our successes are so important to me.

I was talking recently with a mom who said she feels like she hasn’t done enough. I can’t help but wonder if all parents feel this way when their kids are young or if it is just for those of us in the disability community. This mom has worked so hard to be sure that her son has access to all of the therapies he needs, to the doctors that understand his disability, and educates teachers, family members, friends, and her community to better understand him. Her words and her path felt all too familiar. As we talked, I reflected on everything I have done over the past 22 years, fully aware of the progress that was made, and yet I still feel like I haven’t done enough. While I tried to reassure this mom that she has gone above and beyond, as she has, I couldn’t help but feel like I’ve failed my kids, too, and have not done enough. I thought of it as I laid there with Parker in the dark, watching him breathe as he slept so quietly. I could have done more.

No part of me will ever understand why life is this way, why some people are faced with such challenges and others are not. I also appreciate that his challenges are far less than many and I am so incredibly thankful to have him with me, especially as I have watched friends not be this fortunate from other disabilities, cancer, or life’s tragedies. I understand life could have been so much harder and try not to take for granted, even in these moments, the amazing gift I have been given with my children.

Like everyone else, I can only do my best. Sometimes that will be enough and sometimes it will fall short. In these moments of rest, when I let my mind slow down, I cannot help but wonder if I have done enough if my best was enough.

Eventually, I will drift off to sleep. We are yet to have a day when I haven’t fallen asleep during these given opportunities. When I wake up, every tab in my mind is open and going again reminding me there is not time to reflect on what I didn’t do but instead to focus on what still needs to be done and we keep pushing on while appreciating every moment we have together, even the incredibly challenging ones.

One way or another, we make life work. As much as I fear the loneliness I’ll have after we move onto this next phase, I wouldn’t change this plan for anything as it will truly give Parker the independence he needs and time to shine. And I know, he will shine.

And believe me, as hard as it is for me to slow down, and as hard as it is to worry that I haven't done enough, there is no way I'm passing up a chance to take a nap and cherish this time we have together. And... nap, I mean, really - never pass up a nap!