Unexpected Grief.

There are not a lot of weeks where Fragile X kicks my butt, however, this week was one of them. Not the entire week and not physically (whew! Nice change from those days!). I’m not even sure it’s 100% Fragile X as much as it is that cycle of grief that comes along when you least expect it.

Many years ago, Melissa and I argued with an editor over an article on grief. The original article stated that grief is something you experience once, and it’s done. Either you move on from it or you don’t. We could not have disagreed more, and the article was re-written to reflect our points of view. Grief is a vicious cycle, especially in the disability community. I wish I could say it is a one and done type of thing but it’s not. I wish I could tell you that there will be an end point to this cycle but no part of me believes that there is an endpoint. There are times you expect it – milestones, birthdays, driving, graduations, weddings, births… and times you don’t – when you see other children playing, something on tv, or an overheard conversation.

When you get a diagnosis that changes your life, there is no way to prepare yourself for the hits of grief that will come along the way because they always pop up when you least expect them. These last 2 days have been just that for me. I was going to write about each of them individually immediately after they happened, but I couldn’t. Emotionally I was not in a spot where I could write about it. I certainly did not expect back to back blows but grief, she’s a snarky little bitch like that and likes to kick you while you are down.

Last weekend I overheard something said to Rylee – that will be it’s own post when I’m ready to come to terms with it -  but it may have been what triggered this newest round of grief despite our week starting out pretty awesome.

Wednesday night, I had a meeting about Allison’s upcoming trip (in 2020) to London, Paris, Pompeii and more amazing places. My mom is going with her and those who know me best know that every single ounce of me wants to go, too. Three generations on a trip of a lifetime knocking off several places on my bucket list – um, yeah! However, it also comes at a time when Parker will still be living at home with me and leaving him for 12 days is simply not something that I’m sure we can make happen. The last time I left Parker (for a work event) for an extended period of time, it did not end well… at all… and I was stuck all the way across the country. I panic at the thought of something happening when I am an entire ocean away where I can’t just drop everything and fly home.  I’m also not ready to say it is impossible yet. I’m working on plans for a trial run this summer – it will be my final deciding factor. For now, I just needed to get to the meeting.

Parker is fickle. There are days he wants his independence and for me to leave him on his own while I run to the grocery store or to grab him something to eat. And for those 10 – 15 minutes, he is fine. He doesn’t even leave the couch. Other times, he’s more than happy to stay with Allison while I run longer errands. Even though they usually stay in separate rooms, they are at least both here. And then there are times where he does not want me out of his sight at all and I am left sneaking out of the house. That is a total crapshoot. Either it’s going to work or it isn’t.

Wednesday night, he was somewhere in the middle – which is the crappiest place because it leaves me not only guessing which way he will go but it shoots my anxiety right through the roof trying to guess. (Side note, that is never helpful to the situation, especially since Parker feeds off of my anxiety.) We finally agreed, I was going to the meeting and he was staying home with Allison. He was pretty ticked off about it but it was an important meeting and he didn’t like the option of going with me. Usually, when I leave him with Allison, he wants me to take Allison’s car – which is fine, it is always the last car in the driveway so it’s easier than moving it and then backing mine out. I grabbed her keys and walked out the door – while he yelled at me. (Always awesome *insert eye roll here if you missed the sarcasm*) I backed her car out and paused in front of the house debating if I should keep going or stop, park her car and go get mine. While my gut told me to park it, I went with the easy route and took her car (I'm not always the brightest.) After a couple of blocks, I called Allison to see how it was going and could hear him yelling, super mad in the other room. She told me it was “fine” even though it clearly was not. I asked her if she wanted me to bring her car back and take mine she said "no", the decision was made he would calm down and be fine so I kept going. I called her twice more on my 5-minute drive to the meeting across town. I should note, my anxiety never helps her either. By the time I reached the doors to go in, Parker was still yelling and I had Allison worked up enough that she was crying. Because… *mom of the year* here, I pushed them both way more than I should have. My fear was he wouldn’t calm down (he was mad I took her car) and while he never goes after his sister physically and while he hasn’t had a physical meltdown in forever (knock on something now and loudly), it was a growing fear that this was not going to end well when I said, “Do you need me to come home?” and through her tears she said, “Yes.”

I picked up the papers and let them know I could not stay (incredibly understanding people who have known Parker forever and love him) and headed home. I cried the entire drive home (all 5 minutes of it) feeling completely defeated and knowing if I can’t leave him with Allison for an hour, leaving him for 12 days is truly impossible. That is when the grief of living the life of everyone around me who can attend meetings, go on trips, or do anything spur of the moment hit me… like a ton of bricks, even though I knew I was partially to blame for this night.

When I walked in the door, he was angry I was home “What are you doing here?” he yelled at me. With a sigh, I walked into the kitchen to start his bedtime medications trying to shake off my disappointment in myself for letting my anxiety get us all upset while also noticing we both immediately came down 10 notches just by being in the same room again.

While I know my anxiety played a role in that night, the reality is though that if conditions are not perfect it doesn’t go well and I know it. So when conditions are not perfect, my anxiety rises. I do my best to keep that hidden but it’s always there.

I dealt with that grief in the best way possible (*insert sarcastic eye roll again*) by being angry at every person who has ever rolled their eyes at me, talked behind my back or to my face about me not attending meetings but also wanting to have a voice in what is going on. Seriously. They have no idea what it takes to make something “so simple” as a meeting or wedding/baby shower, or even just meeting up for dinner. It’s not just that it takes planning, I’m pretty sure I’m planning in the few hours I actually sleep at night, planning is just part of what we do in this house. I plan in “something spontaneous” often, that is how plan dependent we are. But the reality is, the planning means nothing if Parker isn’t willing to stay with someone who isn’t me. And there are very few people he wants to stay with (cue Rylee, Kylie, Remi, and friends here). I’ve been called back too many times by family and Parker sitters to know that the look he gives when I leave (or attempt to leave) will let me know if it’s even worth the walk to the car or not.

So now I’m grieving that I can’t go to a meeting, that I likely cannot take the trip with Allison, AND that I’m judged for not being able to attend (totally not the meeting that night but different ones), and that I have anxiety that adds a layer of crap to the already challenging life we live all while trying to not let ANY of that show. And I’m grieving that people lack the empathy to be understanding – but I grieve that almost every single time I log into social media.

I go to bed in a funk, trying to clear my mind to start Thursday new. And it worked. Thursday was pretty awesome. We had a great morning, Allison was excited about her Dr. Seuss project at school,  Parker was completely on board with the change in our schedule for his dad to pick him up from school so I could spend the day with my grandma while my mom was away on a trip with my dad. It was a good day for us all.

I was certain I had emotionally dealt with this cycle and was moving on, because, well, that is what I do. Keep moving forward with a smile, ready for whatever is next and next at that moment was basketball practice for Parker.

I enjoy watching Parker and his teammates practice. Parker doesn’t like to be watched so much so I stay busy with a game on my phone while listening and the watching when I know he isn’t looking. And of course, watching more closely when I see that grin on his face that he wants me to watch. This was a good end to my day. He was happy, everyone was having fun, everything in that moment felt good. This was happiness taking over every bit of me.

Until a conversation caught my attention from a couple of moms the next table over. 

Before I go further, I want to say this, I want to be very clear, these moms have every reason to be excited and happy and nervous and, really, over the moon thrilled with this opportunity. Every reason. Please do not think I am trying to take that from them and I really do not want you to take it from them either. I am truly happy for them and excited about the next steps in their lives. You can be all of that and still have the wind knocked from your sails. Really, I experience it often, you can be. So please know this WAS the right time and place for their conversation and I am excited and happy for them and really hope you are, too.

Parker is one of the very few who have stayed in school after his class graduates. It’s hard for me to grasp why some parents don’t keep their special needs kids in school longer for job and life skills especially when there is absolutely no plan for them after graduation. But, very few here do and many end up regretting it. That said, Parker is significantly more affected by his disability than most of the others. So, it was a much easier decision for us to make.

I’ve watched 3 other families that I know (across the US) send their special needs kids to a college program where they live on campus and get to experience college, typically for 2 years, at a major university. These programs are amazing, hard to get into, and awesomely something I see happening more and more across the country. I cannot say enough about fantastic these programs are and the really awesome things I’ve seen my friend’s kids accomplish as part of them.

The moms Thursday night were discussing sending their sons to one of these programs and the incredible experience one of Parker’s former teammates is having through one of these programs. It was all things as a special needs mom you want to happen for your child. It is acceptance, the college experience, awesome life skills, and so much more. So while my heart was leaping with excitement to see another family I know looking into this, my brain turned my focus to my amazing boy on the basketball court forcing me to see the reality that he is the lowest functioning on the team, reminding me that no one believes in him the way his Momma does and that this is something too far from his reach.

(*Stop now and get some kleenex. This is your warning.*)

It hit like a ton of bricks. I forced a smile the rest of practice while my heart shattered, again, and my mind flooded with everything I had dreamed of for my son that will never happen. Things I had suppressed pretty damn well for a long time. And the fear of his future crept back in taking over front and center of my every thought.

I have a plan for Parker. I wish it were so much more than it is. I don’t know if it will work. I don’t have a plan B… or C…. or D… or E… or F – which is how our life works. You always have multiple plans. I’m still working to finalize every single unthinkable detail for plan A.

The plan doesn’t include one of these college programs. The reality is, this is another thing he is excluded from because he isn’t high enough functioning. Just stop a minute and let that one soak into your brain the way it has mine. My son doesn’t qualify for a program for individuals with special needs because his needs are too great for the program. He can’t function at a high enough level to succeed in a special needs program.

There is no way around that reality without being brutally honest and saying that fucking hurts. (I'm not even going to apologize for the f-bomb that's how much it hurts.)

Here’s the thing and I know it will be the first comments said to me, this does not change how much I love my son, nor does it change how awesome he is, or how happy we are for those who get to have this experience.

Here is the reality that is with me every day though... 

My son is never going to get married. Much to his extreme dismay, I don’t even know that he will be high enough functioning to have a girlfriend.

My son is never going to be a father. Or grandfather.

My son is never going to go to college.

My son is never going to drive a car.

My son is never going to be the “star” / “top player” of anything.

My son will never hold a full-time job.

My son is never going to be completely independent.

My son will always need someone, every single day for the majority of the day, in his life so he is able to be a part of our society.

My son will always be at risk of someone taking advantage of him.

My son will always be at risk of being abused.

My son will always be at risk of being bullied.

My son is at a higher risk for police brutality due to his inability to communicate and his actions when he is overwhelmed. 

These are honest facts about our life. These are all things I grieve. Sometimes all at once. Sometimes for days, weeks, or even months and years.

These are also things I have accepted (or come to terms with and advocated against).

Despite the grief. Despite the reality. NONE of this changes who my son is to me, how much I love him – and who I work hard to be sure the world sees about him, too.

My son is the very best son I could ever ask for.

My son loves unconditionally.

My son sees the good in every single person and thing around him.

My son has the best sense of humor.

My son has the best laugh, even his fake one where he snorts to mock me (because I snort when I laugh at times.)

My son is an amazing little big brother to Allison.

My son is a pretty awesome step-brother to Abby & Grace.

My son would demolish anyone who hurt his sisters. 😊 (Be warned, the dude is a very protective big brother.)

My son is always learning.

My son is the biggest Cubs / Bears / Bulls fan around.

My son has empathy and compassion.

My son is nurturing (he really loves babies and old people!).

My son has manners, most of the time. He is 19, they come and go but they are there.

My son has friends who love him and are there for him.

My son has fantastic parents, siblings and extended family who’s world he lights up every day.

My son will always believe in you. He will always see the best in you.

My son will bring out the best in you.

My son will make your world better.

My son will teach you about humanity, humility, compassion, empathy, laughter, and love… and the Cubs, Bulls, and Bears.

My son will always be trying new things.

My son will always be pushing himself outside of his comfort zone.

My son will be successful. He will have failures and setbacks but he will always get back up and try again.

My son is simply the most amazing 19-year old I know.

My son (and my daughter) completed me and made me a better person.

I’m always going to have moments of grief. They are always going to hit me when I least expect. These moments do not change how much I love my son, how much I love that he still tells me he loves me multiple times before going to bed, or how much I love that I still get to tuck him in each night.

You are allowed to grieve. You are allowed to hate that your child has this disability. You are allowed to mourn the person they will never be WHILE celebrating the person they are and will be.

It’s ok.

It’s allowed. It doesn’t make you a bad parent. It makes you human.

Right now, I’m hit hard. I’ve cried the last 2 nights to the point that my face is raw from the tears that sting my face. It’s been a long time since anything has hit me this hard but that is how grief works in the disability world. I may be fine later today, or tomorrow, or it may take me much longer, but I know, I will be fine again. I don’t know if something else will pop up in the immediate future to carry this on a bit longer or hit me just one or two more times while I’m down, but I do know I’ll get through it. And I know that this happens far less than it used to. I could go months or even years without being hit this hard in this vicious cycle.

While I grieve, I don't love my son less – if anything I love him more. I don’t resent him for the things that I cannot do, instead, I appreciate him for the things I can and the way I see the world because of him. 

Inchstones, my friends, inchstones. If you are missing them, you are missing the world.