Magic Moments

Traveling with Cyrus is definitely stressful. Just the process of packing takes an incredible amount of forethought and planning. I have a list of three dozen separate items - a third of which are different medications and supplements, none of which can be forgotten. Then we have to figure out how to fit it all in the car, which is not always a small feat when the wheelchair takes up all of the trunk. The drives themselves have to be broken up into short chunks that accommodate medication schedules and Cyrus's tolerance for sitting up. But despite the struggles and the stress, Kyle and I are of one mind that the trips to see extended family and friends have become even more important to us.

Grandparents, aunts, uncles, and friends often truly light up when they get to visit with Cyrus. And I love that moment when they first greet him. But there's something else that always strikes me - they almost always comment on how much he's changed. There's the comments about how much he's grown, but there's also comments on how much he has developed. This helps to remind me of the progress that has been made, which often feels imperceptibly slow to me. But to those that only see him once or twice a year, the difference can be quite stark and dramatic.

When we arrived at a dear friend's I placed Cyrus on the ground on his back. And he immediately rolled over to his stomach. And my friend was delighted! "You weren't doing that, last I saw you," she said with a smile. I was shocked. He wasn't? The last time we visited was just under a year prior and I had to stop and think about it. I realized that this was a new talent on the summer trip last year, but that it happened later on the circuit so she didn't get to see it. And that was such a crazy thought to me  because I feel like he's been rolling into walls and furniture since forever!

I have also noticed that Cyrus seems to display bursts of development on these trips themselves. This may just be due to the stimulation of new people and new environments, or maybe it's simply that I honestly give him more undivided attention while we're on vacation.

When we arrived at grandpa's he was wary. This was the third new place of the day, and often we lug Cyrus around all over the place - to people's houses, restaurants, and parks. None of it has ever seemed to stress him much. But here, he's eyeing everything askance, hesitant before he rolls about the room. This was exciting too! Because it shows that he's more aware - that he knows this is not part of the normal day. Grandpa got him distracted though, and he started enjoying himself.

When visiting the Redding cousins, Cyrus is often ignored in the excitement of Uncle Kyle's arrival. But on this segment of the trip my oldest niece took a shining to him. And on two different occasions, I walked in on her holding his hand and singing to him.

The next morning, Cyrus had a panic attack followed by a pretty severe seizure. Kyle was still asleep and I had no idea where my sister had disappeared too! I felt that moment of panicked indecision. The floor was hard linoleum, but I knew he shouldn't stay in the chair. I took him out, and there's something about feeling the convulsions in a child that you are holding that sends your anxiety sky-rocketing. But I didn't know where to put him. Finally, after wandering the house with Cyrus in my arms I managed to find a space on my sister's queen size bed and rolled him onto his left side.

The kids were fantastic during the "emergency" by following my directions quickly and without question. They remained completely calm. My nephew served as my time keeper. I told him I needed to know the exact time because he could see the clock in the kitchen and I could not. And I asked him again, every thirty seconds or so, and he seemed confused as to why I kept asking, but kept shouting it back to me anyway. My niece came in at that point (wanting to know if Cyrus had slept well! Such a precious child!), and I sent her to wake up Kyle to find Cyrus's emergency meds. I had her repeat the directions back to me and she scurried off cooperatively. She came back almost immediately asking where the back pack was, and then came back again with the meds themselves.

This all took place in about two and a half minutes. Cyrus came out of his seizure and took a two hour nap. No emergency meds were required. Both children were concerned and affectionate with him afterwards until I chased them out to let him sleep to recover. But I felt so grateful to have such caring and reliable helpers on hand.

About two months before our trip, we had a playdate with a friend who had a four month old baby. And I loved watching them roll around together as they were physically very much in the same place - lots of flailing and uncoordinated rolls. His friend would roll into him just as often as the opposite. It was so cool to see them interacting at the same level. A month goes by and we have another playdate and it's clear to me that Cyrus has already been left behind a bit. The change is not huge, but it's noticeable, and it has long since stopped hurting, but it's hard to find true peers for Cyrus because he stays a peer for such a short time.

At our next stop on the trip at my sister's house, the newest and youngest nephew is yet another example of this. Cyrus's seven month old cousin is crawling and cruising in circles around him. The little tyke would crawl so purposefully and dramatically, come up to Cyrus and grab his mouth, eyes, and hair. At which point, Cyrus turned and looked right at him - held beautiful eye contact, and then released this exasperated long-suffering sigh, before turning away and tolerantly accepting his fate. Almost like he understood that his cousin was just a baby and didn't know any better. And in that moment, Cyrus seemed so much older than his cousin, more mature and more aware like an older brother. That was really cool.

When Cyrus had finally had enough hours later, I took him upstairs alone to recover from the over stimulation. He immediately rolled to his side, and tried to lift up his head sideways instead of backwards as if he was trying to sit up. This is a move I had never before witnessed from him and watched with bated breath wanting to help, but also wanting to see what he could do. He was pushing off his elbow and grunting with the effort. He tried oh-so-very hard before he suddenly flopped back to the ground in defeat. He immediately started crying in the frustration you see in an infant who knows what they want to do, but can't quite figure out how to pull it off.

I found myself wondering if he is aware that he has to struggle more, if he watches his cousins run around screaming and wonders why he can't do the same. He has never seemed to know the difference before, but this day he would not be consoled with cuddling and pacifiers. But you know what did work? Physical therapy! Holding him out in a supported sit, where he has to do all the strength and half the balancing - where I just act as training wheels to catch him if he starts to lean too far in one direction, was the only thing that got him to stop crying. And this was strange in itself because Cyrus usually hates physical therapy. But this afternoon, he was determined. I definitely took advantage, and two days later I can get him sort've balancing side to side when he's leaning forward in the supported sit. I can even let go of him for 3-5 seconds before he starts to fall over.

Then there's this little girl - my youngest niece who's almost five. She has always been fantastic with Cyrus - playing with him, imitating him. And he definitely tries to follow her. But I thought that with a new little brother, her interest might have waned. My fears could not have been further off! This child truly sees my son. She is attentive and includes him in her play. This week, she wanted to play doctor. She was the doctor and he was the patient. She had come to check him out at a home visit and give him his shots.

 









She tries to comfort him when he's upset and she still loves rolling around on the floor with him - often chasing him around as much as he chases her. She is excited to to push him around in his wheelchair, and was absolutely indignant at the store when he had been taken out of her sight. She delights when he smiles and laughs and at one point he had rolled onto her arm and just stayed there cuddling with her for several minutes. Then she would not stop gushing about how much Cyrus loved her.

I felt so privileged to witness what I can only describe as pure magic moments.  These children all give me such joy in the moment and hope for the future. And I treasure these trips, as exhausting as they often are, as a time when the daily stresses fall away and I am able to take more moments to just connect with my son and husband.