Tuesday, July 25, 2017

Guardianship and Guilt

Almost every night, I cover up my son, kiss his cheek, tuck in his feet and begin the routine of listening to him yell at me after I closed the door.
7 o’clock” he will say.
7 o’clock” I will reply.
I wake you up first!” he will yell.
Not if I wake you first” I will reply back as I walk up the steps, knowing the odds of that are close to none.
A few more back and forth conversations will happen as he settles in bed. Sometimes it’ll happen quickly, sometimes 5 – 10 minutes or more can pass before I hear it but right before following asleep there will be one more yell for me. Eventually, I will hear it…
I love you
I love you, too” I will reply every night that he’s here for me to tuck in.

Every single time we go through this routine I take a moment to pause and appreciate how lucky I am to still do this. It’s something many parents would love to be able to do, either because their child is too grown up for this now or because their grown-up child is unable to have this conversation or maybe because their child is no longer here. No matter the reason, I appreciate each night I get to tuck him in, each kiss to his cheek, each time he says, “I love you”. It's one of my favorite parts of every day. Not because he's going to sleep but because we have such a fun exchange in this routine, it's always filled with laughs, smiles, teasing and love. It never gets old, it's never less fun. It's our thing and we love it.
This has been a challenging year for me, emotionally, with Parker. It was his senior year. His friends are headed off to college. His life is changing in many ways. I’ve shed more tears in the past 7 months than in my entire life. Some over change but mostly over guilt. And while I can typically keep it mostly tucked away now and then it wins and overcomes me, totally knocking me on my butt.

I’ve come a long way since Parker’s fragile x diagnosis. I’ve come a long way with my guilt of unknowingly passing a mutated gene onto him, forever changing his life. As I’ve often explained to others, grief is a vicious bitch of a cycle. It is. A cycle...vicious, and a bitch. I’ve argued the topic with people who don’t walk in my shoes and with people who have but have moved past it... but for me – and thousands of others – it’s a cycle that may never have an end. 

I can be fine, accepting and totally at peace with myself for not knowing I carried the fragile x gene mutation and passed it along. I didn’t know. It’s that simple. I had no idea. But this past year it’s returned with a vengeance and apparently has no intention on leaving anytime soon, no matter my efforts.

I thought once we moved past graduation, I’d be ok again. I knew I had the guardianship process ahead of me but thanks to my amazing friend Libby who made the guardianship process with her son a fun “we did it” family moment I was sure I had this under control and would be able to keep it positive taking her incredible spirit with us through this part of our journey.

And then, I met with my lawyer and cried through the entire meeting where he was going through the steps, again, since Parker was now 18 despite the fact that I have the nicest lawyer ever. He goes above and beyond to make each step in the process as smooth and pain-free as possible for me and much more importantly, for Parker.

Today, though, was the day it became much more “real” to me. It was the day the guilt returned. It was the day that knocked me on my butt not long after I had finally found my way to stand again.

Today was the day I had my son served with papers. The day with officially stamped and signed papers that say “Your mother says you are not capable of being your own person”. Ok, they don’t say that exactly they say something more along the lines of “he is summoned…. Petition for Guardianship… disabled adult… Holly will be the appointed guardian of your person and estate.” Which is, in my head, the same thing. You mom has declared that you are not able to make decisions and now has to go through this long and expensive process to go to a judge and choke out the words "he isn't capable of caring for himself and making decisions alone." And let me tell you right now, no matter how much I know this is exactly what has to be done and what is best for Parker, that sucks. It sucks to say to people "he can't" because I've fought for 18 years that "he can". But this one, no matter how much I would love it, he simply can't and this is what is best for him. I can't even write about it without feeling like I have to justify it. It sucks. I want to celebrate like Libby (I truly want to be Libby when I grow up, she's just amazing and fun and I adore her!) but I'm not there yet. Maybe by the time I go to court next month I'll be able to channel the Libby inside of me, it's my goal but I refuse to be disappointed in myself if I can't. 

There is not many things that are harder than standing in front of people and saying "My kid can't... ". I know it. You know it. But let's make it fun and mentally exhausting by making you come up with thousands of dollars and crushing your spirit in front of a judge to say "My kid can't...". Seriously. Gut wrenching to me.

Back to today... today we drove to the detective’s office where the nicest lady you could ever meet came outside (because Parker refused to go inside) to serve Parker his papers. He wasn’t going to take them at first but as she kept extending them closer to him while talking sweetly to him until he finally took the papers, tossed them onto my seat and rolled up his window as soon as her arm was no longer in the way. It's the law. The papers had to go from her hands to his. I'm just thankful she was so wonderful and patient because he did not want to take the papers. 

I thanked her, got in the car, put on my sunglasses and pulled away with tears streaming. I don’t often cry in front of Parker, or Allison really, but sometimes no matter how I try to hide it, he always knows.
Crying, mom?
Yeah buddy, it’s ok.”
Call Dan? Make it better? He’s sleeping? Booking comics?
It’s ok, buddy. Mommy is ok.
Just breathe. That’s what Dan tells me. Just breathe.
Yes, buddy. Mommy just needs to breathe. I’m ok. For real. I’m ok.” even those I was not even close to being ok. My heart was shattering with each beat.

As he returned to drumming on my headrest the voice inside my head screamed at me the words I wanted to say to him while I tried to better conceal my sniffles caused by my crying.

The words I want to say to him, that I’ve said before while he’s slept or recovered from a meltdown and words he will likely hear again or I'll say silently to myself.

“I am so sorry. I am so very sorry. I am sorry.” And I am.

I am sorry that I cannot send you off to college and instead will be going to court to have you declared unable to care for yourself. I am sorry that your life has so many struggles. I am sorry that there are things you truly want to do and say and have but cannot. I am sorry that this is the life I gave you. Because no matter what anyone says to me, I did this. This all me. Your disability is a result of my mutated x chromosome. Mine. No one owns this except me. And I could not feel worse or be more sorry. I am so, so, SO very sorry.

I have done everything I could, well, I’m sure not everything – I’m human, I’m sure I could have done more if I had put my mind to it – to be sure he had a great first 18 years. There’s a lot that he missed out on but a lot he was able to experience. Most importantly, friendship. We have had way more laughter than tears. Way more good days than bad. Way more love than you could ever imagine. And that was just the first 18 years. His life is just getting started, we have so much more ahead of us… ahead of him. 

So please, don’t think that every ounce of me is sad. Just one small ounce. The rest of me (and there is a lot of me) is incredibly positive, hopeful, and filled with love. All of the other ounces in me fall there, in the happy, proud, so much love category. 

As much as I get to “own” the amazingly awesome moments in our life, I get to “own” the guilt too. I’ve decided that so please do not put energy into telling me not to 😊 It’s healthier for me to let it cycle and own it than to hide it and tuck it deep inside, which is what I will do. I believe in letting things out and that includes these cycles of guilt.  It’s a process I go through when it pops up and knocks me on my butt. I don’t know how long it will linger but as quickly as it comes, it will leave and that is my silver lining.

But tonight…..Tonight, no matter how much my heart is hurting from the guilt, I will still get to tuck him in bed. I will still remind myself how incredibly fortunate I am to be able to do that (it’s really just as wonderful as it was when he was little! Sorry to rub that in to the mom’s who can no longer tuck their kids in – if it helps, Allison in no way would let me tuck her in!) I will still appreciate our back and forth as I wait for those incredible words… "I love you."

And for a few days while I work through this, after I yell back “I love you, too” inside my head I will also  quietly to myself say “I’m so sorry.

While I'm at it... July is Fragile X Awareness Month. Please take a few minutes to learn more about Fragile X by visiting www.fragilex.org and, if you can, donate to our fundraising page: https://give.fragilex.org/fundraiser/1003868 


  1. Thank you for your writing, Holly. Our family is not in the FragileX world, but I relate to that silent "I'm sorry" whisper so much.

    1. Thank you so much for reading and responding, Ellen. I know that "I'm sorry" extends far beyond the Fragile X world. My best to you!

  2. I absolutely couldn't have said it better!! I feel that everyday, but, sooo much good and pride to see my 2 out working and socializing everyday! Thank you!!

    1. That is fantastic to hear! I'm glad they are doing so well! Thanks for sharing!