Friday, June 16, 2017

Who heals you?

My guy, his last few days have been rough. I’ve seen it all sinking in since graduation (which I’ll eventually write about) but this past week building up to today have been hard for us both. While Parker walked and "graduated" with his class, he will return to school in the fall to continue in the post-secondary program until he is 21. He understands he is still going to school but not all of his friends will be back. 

Each day this week he has asked me:
Cutie (he’s called Allison this all of her life, despite her requests not to) going to the High School next year?
Paige (Allison’s BFF) going to the high school next year?”
Who’s room they be in?”
What classes are they taking?”
Robbie going to be there? Volhand’s room? DelMastro’s?
Zach going to be there?
Coach Greg needs more people. Who’s going to play? Who’s going to be in buddies?
Drew not be there.
Kylee not be there.”
Remi not be there. Dylan be there?” (Dylan will be a freshman – this one’s confusing him a bit why Remi isn’t staying to help Dylan).
Tori staying?”
No Chris?
What room I go to?
Who my teacher?
What I do now?
Where Rylee be?

To get through these questions (and the endless list of names he asks about) without shedding a tear and sounding happy as I answer while seeing the confusion and uncertainty in his eyes is nothing short of a miracle. 

This is gut wrenching, every single time. It’s yet to get easier for me. He’s perseverating on it. I do my best to answer and to change the topic. The sooner I can redirect him, the less time he will stay stuck on this continuous loop. Some days I’ve rocked this. Others, like today, complete fail.

In the few short weeks since he left school, I’ve seen so much of his confidence slip. So much of his progress slip. And maybe it is not, maybe it is me and my fears. Maybe it hasn’t and it’s my imagination (he tells me this frequently “it’s your imagination”!) and fears as I watch him perseverate on this topic. Or when I go over the months with him “after June?” “After July” “Go back in August” which always circles back to asking where everyone will be.

Parker can’t express everything to me but you can see so much when you look in his eyes or watch the expression on his face... the way his forehead wrinkles up when he’s worried and thinking, the way his eyes are focused or gazing in the distance and the hardest of all, the eyes that are fighting back tears.

It’s been a long day.

I’ve watched this build and have had friends over to see him frequently. Some who will still be in school and some who are going off to college. I think it helps but let’s face it, I’m totally winging this.

Today it built to the point where he just stopped functioning on me. He had a friend over but as soon as we picked his friend up Parker was obsessing. “Where’s Rylee?” “Rylee still sleeping” while texting her repeatedly. He came to a halt when we got back to the house and needed to go inside. He stood at the doorway blocking it with one demand. “Call Rylee.”

So, I did.

And then I almost threw up when I got the message that her phone was disconnected. She’s never been out of contact. My mind immediately raced with the craziest fears (because that’s what my mind does) while telling Parker it’s just because her phone is full that we can’t leave a message and she must be working so she can’t answer…

We came inside and he opened his laptop to my Facebook page and handed it to me. “Call her.” Seriously, this kid, he knows every option. I said, “I will message her, I am not calling her through Facebook.” So I sent a message, putting my biggest fear out there… “Did you get a new #? Parker has been trying to get a hold of you and today it said the number was disconnected. 🙁
He'd love for you to come swim 😊

She had not been online in 9 hours so I was not sure how long it’d be until I had an answer. Parker’s friend and I coaxed him out of the house and into the pool. I filled water balloons and left them as I went back to work.  Every few minutes I’d hear him call me, the first few times I went out “What’s the matter, buddy?” I’d ask as he just stood in the pool water. “Rylee answer yet? Tell her come swim.”

After awhile I stopped going out. I could see them through the window as I worked and his friend was doing a great job of trying to get him involved. But mostly he just stood in the water. Not throwing water balloons. Not splashing around. Not jumping off the ledge. Just standing and looking off into the distance.

Eventually, they came in. “Rylee answer yet?” She had. Her phone was disconnected, unlike my crazy fear that she was changing her number and ditching my boy it was something more true to life and the pains of growing up. I was breathing easier while messaging with her on Facebook with Parker dictating over my shoulder. “Tell her come over. Tell her come swim with me. Tell her no work. That sucks. Work sucks. I'm tired of that damn work. Tell Rylee take a day off .” *Yes, we've become a bit of a potty mouth, I try to remind myself this is "typical" for 18 and pick my battles on when I want to remind him that I don't like those words. Today was not that day.

The boys stayed busy while I went back to work. Ok, not busy, but not asking me to message Rylee every 5 seconds so at least not perseverating. I had told him that Rylee was at work. It had bought me some time but each time I heard his voice or saw him walk by I could see an incredible tension that was building. When I got off of work we took his very understanding friend home, an hour earlier than planned. Parker was crashing on me and I needed as few people around as possible. He kept telling me to call Rylee because he "was scared".

At his friend's house, before backing out of the driveway, I shot a quick message to Rylee saying Parker really wanted me to pass along a message and I'd likely repeat the same message a few more times just to keep him happy. She responded that she could swing by for a few minutes. I let Parker know and couldn’t get him home quick enough.

Still in his swim trunks with his towel around his neck he watched for her from the window. I used the time to wrap up some unfinished ends of work. When she pulled in he was gone, in a flash, out the back door. As I looked out the front window, I could hear her voice in the back yard and Parker splashing in the pool.

He knew she couldn’t stay long and that she couldn’t swim. His body was wound so incredibly tight from holding it together for the past few weeks he was finally letting it out. While Rylee and I shared information on Fragile X to her friend Grace (and heard about Grace’s mom’s work in the disability community) Parker emerged and submerged in the water like a breaching whale...except in adorable human form.

He’d jump up while taking a big breath of air then toss himself to the side, back or stomach crashing down into the water and going under, kicking his feet and swimming to a new spot before immediately doing it again. We watched in amazement as he would briefly appear then disappear again questioning how he could hold his breath so long and not have a nose full of water.

Rylee would occasionally walk over to the sides of the pool, tossing a water balloon, spraying the squirt gun at him or just talking. You could see a smile each time he’d hear her voice while he kept up this wave crashing activity. I knew what he was doing and I was so relieved to see it.

He was self-regulating, taking all of that emotion that he’s kept inside and letting it out through the sensory input he was getting from both the water and the way he would crash his body into it. I could see his previously stiff body relaxing. He wasn’t talking to us but he was listening, very intently each time he came up and would occasionally pause listening to our conversation a bit longer. 

As it came time to go, Rylee walked over and asked him to come to the side of the pool. He went over to her then immediately pushed off the wall and back away. He was almost where he needed his body to be but not quite yet. Rylee patiently talked to him each time he’d come up until he was ready to stop. She promised him she’d be back on Monday and asked him what time was good for him.

As I talked to Grace about the incredible bond between Rylee and Parker she said, “This would be a great picture” and started snapping pictures of Rylee and Parker talking. In complete agreement, I took a few too.

She asked for a hug and right as we thought he was going to hug her, he asked for his towel. He didn’t want to get her wet but he wasn’t getting out yet either. I handed Rylee the towel and she walked back to the side.

After they talked she asked for her hug. When he went to hug her he paused and said, “My arms are wet.” she said, “It’s ok, just hug me.” And he did.


"My arms are wet"

"Just hug me"
It was a Parker and Rylee hug that is truly good for them both. He hugs her super tight and doesn’t let go until he knows they are both ok. I’m not sure if she has realized yet what he’s doing. If you are standing behind her it’s when you can really see it. It starts out as a hug, then as you see his body relax you notice he starts to gently rub her back just a tiny bit. He will either, let go after that or tighten his squeeze. When he tightens his squeeze, I think (but I could be wrong) that he’s trying to help rid her of the negative energy she’s holding onto as well. When he’s ready, almost as if testing, he will rub that small spot on her back – mid shoulder blade. If all is good he was pat her back and let go. As if to say “You are ok again, too.” or "We've got this."

Maybe a little reminder to both that they can tackle whatever is in front of them and be ok.
Or maybe he just likes holding her tight because he’s 18 and she’s a pretty girl… it could be but no one knows Parker like I do. No one is as in-tuned with him as I am. He does the same thing with Dan when Dan is more stressed than usual. It’s an extra-long hug, a little rub on the back then either letting go or hugging more, followed by the little rub and either more hugging or a short pat on the back.

He is a healer. He has an amazing ability to pull the stress and negative energy away, even if just for those moments. What he can’t tell you in words, you feel in his hugs. And it will leave you speechless and for a moment, at complete peace.

This is exactly what Rylee’s presence is to Parker. She is his healer. Just her presence near him puts him in a place to settle his mind, to rid it of the anxiety and emotion that he’s holding it. She doesn’t have to say a word, although he likes to hear her talk, she just has to be there.

After Rylee and Grace left from their short, yet perfectly timed, visit today my son emerged from the pool. He climbed up the ladder and came out of the pool and down the other side a completely changed person. He wasn’t tense. He wasn’t angry. He wasn’t perseverating. He was just calm.
And happy.

He smiled and laughed the rest of the night. Asking for a shower, letting me know what he wanted for dinner and watching the Cubs play until he was too tired to stay awake anymore. The energy in our house had changed. My boy was back.

This is friendship.

This is the power of Rylee. She’s not perfect. She drives her family crazy. She’s looking for her place in this new adult world. And she’s everything Parker needs.

In many ways, I think he is all she needs at times as well. The grounding reminder that life isn’t fair, that it’s unpredictable and fragile and funny. The reminder that someone is always watching, looking up to and respecting you…wanting to be like you.

The reminder that everyone has good in them and can make the most amazing difference just by being who they are. 

And, of course, the power of a hug. 

Who have you hugged today?

1 comment:

  1. Ugh. Holly, I'm in tears. For so many reasons. One, my heart breaks for him going through this change (and you). Two, he has the best friends IN THE WORLD! Three, He has the best Momma IN THE WORLD. As I read this I realized a few things. Our Jake is much more affected than Parker which is both a blessing and a curse depending on the moment. LOL. He is 24, non verbal (he has maybe 5 words, the rest is signing or just plain Mom and Dad intuition), His receptive language is super high compared to expressive. He perseverates on A LOT of things as most of our kiddos do. As he's gotten older though transition and new situations are so much easier for him. As long as he is told in advance what is happening he does well. We can't tell him too early about things he loves though like,"time to take a shower", or we are going out to eat tonight". etc. Because he is in the car before you know it. But where we are sort of lucky for lack of a better term is, he doesn't grasp larger scale things, i.e. When 3 of his grandparents pased away over the years. He just doesn't seem to grasp any or it. Therefore it doesn't affect him like it may others. The graduation from HS at age 21 was a bit of a transition, but he went right into an adult Day program which to him is a lot like "school". So this was pretty smooth for him and us. As long as he has his favorite few things, and electronics, he is a happy camper. It wasn't always this way though. I believe it does get better with age. We always say Jake has the life, not a care in the world for the most part. We should all be so lucky. We have great support as well. But unlike Parker, he doesn't have friends. Actually this year was the first time ever he has had a friend! At adult day care he has a friend a little older than him who is also non verbal and also has an IPAD, also likes puzzles, etc. They even sit together in the big bean bag sac chair! So happy about that! But other than that he entertains himself. So I pray for you for strength and peace as you all go through this major adjustment. One day at a time! You will persevere I am positive of that! Hugs and love coming your way!