Kyle came out of his most recent cycle over the weekend. Hurrah! On Monday, I didn't want to send him to his day program because his 1:1 aide was not going to be there and the readjustment of the first day back might have been much harder without her.

How should we fill the day? Kyle had been home for eight days so an out of the house activity was definitely in order. It was a gorgeous day in Phoenix, Kyle was racing around the house with exuberance, and I was pining for my hike.  North Mountain, with it's paved trail, and  close proximity to our neighborhood, was calling out to us.

As soon as I opened his door, Kyle bolted out of the car to the trail. He took the first leg at a run before stopping to survey where we were. The beginning part is very steep but it soon mellows out to a gentle upward climb.

Hiking with Kyle is stop and start. At times, he is running up the trail, then at others, he needs a long break to stop and smell the roses and gather himself up. We went from running to stopping with everything else in between with lots of water breaks.

I decided I would have no agenda for our pace or how far we got. This hike was so that we could spend time doing something enjoyable together while getting exercise. It was not going to be at my usual pace and that was ok. What a gorgeous sunny, but not yet too hot, day in Phoenix and how grateful I was that Kyle was able to have a life again after the rough waters of the previous week. Life's simple pleasures are the best.

I was thoroughly enjoying my time outside, being with Kyle, and seeing him enjoy himself. People watching was fun too. I marveled at the variety of shapes, sizes, and ages going up and down the trail. Since the hike is short, many people do the trail more than once so some of the faces became familiar. My favorite was the mom pushing her toddlers in a double stroller with a baby in a pack on her front while chatting with her friend. I noticed her friend had the stroller when they passed us on the way down and I was hoping she had a really good grip.

Swirling thoughts:

We should really do more of this especially before it gets too hot.

Maybe if Kyle had some extra doses of endorphins, it would help ease the debilitating cycles every month. Note to self.

Phoenix is so beautiful when it's not blistering hot. Days like this are why we live here.

Kyle is suddenly keeping such a good pace, we may make it to the top where we can eat our almonds on the only bench on the mountain.

Wow, it takes so much energy for Kyle to do this, he must burn twice the calories as the average person.

The amount of mental energy seems exceed the physical energy.... his focus to keep himself moving is a bigger challenge than actually moving. Go Kyle.

About 3/4's of the way up, my swirling thoughts were interrupted by an abrupt stop. Uh oh, fatigue? My instinct told me it was time to turn around. Even though the downhill was less strenuous, Kyle didn't really want to walk when we turned around.

With coaxing, we headed down the mountain VERY slowly. The mid morning sun was beating down on us and our water was going fast. Walk a little, stop a lot, repeat. This was our pace down the mountain until Kyle suddenly came to a halt. Gently but firmly, he grabbed both my wrists, looked me in the eye and told me he was not moving any more. Clearly, he was DONE with this hike.

It was only 5 minutes (at MY pace) and a few switchbacks to the car but he didn't care. In fact, he looked as if he might have  felt a little sick. Desperately, I looked to the side of the trail and there was a rock and possible resting spot. Nature's divine intervention because there were not many of these on this trail!

It was easy for me to sit down but very challenging for Kyle. The motor planning involved on shaky terrain and rugged slant of the rock was a huge deal for him. I was reminded of how easily we take for granted all the things our body does for us without thought. For Kyle, anything out of the ordinary pattern of movement requires a lot of thought and effort.  Sometimes, he would rather flee the scene than work through it.

With my support and a little nudge, I got him to sit down. Phew! No shade, but at least a resting spot. Several people passed us on the way up and then passed us on their way back down again. We sat for a long time and I was starting to worry. What if he won't do the required walking to get to the car? Am I going to have to call for a rescue and how would that go? No, I decided I would wait as long as necessary and we would walk down. I was grateful to see more color in Kyle's lips again.

Eventually, after long while, I convinced him to get up and we slowly made our way to the car.

3,129 steps, 1.43 miles, 3 hours quality time with my son. Grateful.                                   

Kimberly showed up at our door with a smile. This was her third time at our house. She travels our city drawing blood from children/adults with special needs in the comfort of their homes. Yesterday Kyle needed a blood draw. Once again, he is in a debilitating, cycle mode which prevents him from going anywhere, especially to a lab.

Our system is down to a science. We sit in his chair together very tightly applying the deep body pressure Kyle craves during his cycles. He settles in with his arm squeezed behind my back. Just enough of it is sticking out to expose the area needed for the needle. I hold my breath and Kyle breathes.

Have you ever had blood drawn and needed to be poked multiple times? Maybe even in multiple locations? This has happened to Kyle particularly when the person is uncomfortable or fearful with him and they think (understandably so) that he might suddenly move. Despite my assurance, if they are new to Kyle, they are skeptical. I've had nurses in a doctor's office which sees people with special needs be too squeamish to even try.

Kimberly has the magic touch and seems comfortable with Kyle even in his distressed state. Unfortunately, she has never met him in his non-distressed state so this is all she knows. When he's ok, he is able to go to a lab and have his blood drawn. People are always amazed at how smoothly it goes once he gets in the chair. The preliminaries of being in a strange place, waiting, maneuvering himself into an awkward chair, and nurse fumbling are the biggest challenges. The actual draw is usually a piece of cake.

Shortly after we took care of the paperwork yesterday,  Kyle and I positioned ourselves for the big squeeze. Angelica, his helper, applied some extra deep pressure from the other side. The more calming pressure, the better. Kyle was rocking the chair and I was unable to fully stop the motion. Kimberly said it was ok and she proceeded to stabilize his arm and insert the needle. (YES, while the chair was rocking slightly). In just a few seconds she had a vial of blood and a bandage on his arm. I could not have ordered a smoother, more flawless job. Perfect!

I'm not sure Kimberly truly realizes what an amazing service she provides with her calm, comforting demeanor and superior skill. What a difference she makes for the special needs community. The visits are always brief. She collects a small fee and even delivers the blood to the lab. For once, something is easy.

Her business is called Extended Phlebotomy Services with the motto "Pride in Perfection". She really should be called Mobile Angel. I'm thinking we might just skip the lab experience from now on.

It's been a nice week and a half with Kyle back to himself after the previous, slightly shorter, but rougher cycle. I believe we have all been breathing  a little easier. I know I certainly have.

Tuning in to my body, I notice there is a relaxing in the pit of my gut which happens pretty quickly after I am sure Kyle has fully recovered. This letting go is a familiar feeling after so many months of Kyle's on again, off again stuff. I am always just a little surprised at my sense of relief because I don't fully realize how tense I become despite my efforts to roll with the flow.

With each cycle I tell myself that I will not let this one get to me. My happiness will not depend on whether or not Kyle is in rough waters. I will just do what I need to do and be strong. I don't want my emotions to be tossed here and there like a roller coaster. I will be happy anyway because I, and only I, am in control here. This never really works.

Though I do not fall apart during Kyle's cycles, and I am less emotional than I was a year and a half ago, I still feel it when I watch Kyle slip into a cycle where we are both holding on so tightly but helpless to do anything about it. My heart hurts as I watch him suffer.  The process of finding a medical solution is painfully slow. Hello, patience muscles.

After a day or so, my determination gives way to what is and a cloud moves over my psyche and soul. It's easier now because I have a lot of help so full time care does not fall 100% in my lap. In fact, I can go on with my life more than ever before these days but the angst is still there. It takes residence in my being, in the house, in the people that love Kyle and it stays until he is out of the woods.

After this most recent cycle ended, I was a little disappointed that once again, I succumbed and was not able to stay more balanced. I got too unhappy for my liking. Darn.

As usual, there is an aha moment buried here. It is not about whether or not I succumb to unhappiness or get out of balance in the face of intense challenges. It is really about resilience, the ability to bounce back and then move forward. I love the word resilience as it slides off the tongue. Perhaps the ability to be resilient is related to allowing myself to be where I am without judgment. This gives me the strength to dust myself off and move on when I am ready.... the strength to be fully resilient.

A close friend of mine is going through treatment for breast cancer and chose resilience as one of her words this year. I dedicate this post to my friend CB. I have a feeling she will be showing me what resilience is really all about. In fact, she already has.

Happiness is indeed a choice but more than that, it is a journey. Resilience is the gemstone which helps pave the road.