Just Wait and See

A blog about hope, despite the disabilities.

The Present of Being Present

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This morning, I read a devotional about being present. It was about not looking into the future and worrying and about not looking into the past and regretting. It framed the mystery of having hope for heaven while at the same time, experiencing heaven here on earth – in the present. As I reflected on that idea in quiet stillness, I observed thoughts about Catherine and all I wished for her and all I wished I had time to do for and with her. The reality is that she simply doesn’t get that much time from me these days. I wish it were different and I regret how it is. Hmmm… that didn’t seem to align with the spirit of what I’d read. It’s amazing how active the brain becomes when one is trying to be still.

Sometimes Sarah wakes up super early and comes into my bathroom where I typically sit to have this stillness time. I sit on a small rug beside the shower. OK – it’s the bathmat! Let me not glorify it needlessly. Usually, when she comes in and sees me in quiet stillness, she does what she needs to do and quietly closes the door behind her. I’m aware of her, and I don’t engage with her as I continue to practice my focus on God. Today, it was different.

Today, she came in and I could feel her near me. I didn’t open my eyes. I could sense her all around me as if she were looking at me and wondering what to do with me sitting on the floor. I had a vision of a mime looking intensely at an object and moving exaggeratedly all around it. I wondered what Sarah was thinking and what she would do. Amidst all that flurry, I did finally think about God’s call to be present. And then, I was surprised to hear a thought spiral toward me – “Whenever two or more are gathered in God’s name, He is present.” Keeping my eyes closed, and trying to stay in the present, I reached out my right hand and turned up my palm. I just left it there on my knee. It didn’t take even a second and Sarah put her small palm inside mine.

No words.

Just a small, still palm, nestled in mine while I tried to stay focused on God. I realized this was being present. This was the moment. There was no “what next?” There was no regret. All the “to do’s” dropped out of my mind. I felt God surround us and thanked Him. I even turned up the corners of my mouth and smiled a bit. Sarah began to squirm her little hand – just a tiny bit. That woke me to the present of that moment. And I felt her move her hand again, only a little. And then I recognized that moment. Each and every single moment was unique and an opportunity to come back to being present.

When I went downstairs to put Catherine on the bus, many moments had already slipped by in the hustle of making lunch, the quick filling of a cereal bowl and covering it with milk, the auto-pilot straightening of the counter. Those moments went unnoticed in a blur. When I gave Catherine “hugs and kisses to last all day,” just before putting her on the bus, I looked her in the eyes. I rarely do that. For some reason, I looked in her eyes and noticed they were red. They were open. I thought for a split second, I wonder if she can see me. And we had a moment. God was present with us in that moment, too. Maybe I don’t need to do more with Catherine and try to fabricate the time for it. Maybe I don’t need to regret all the things I’m not doing. And maybe I can rest easy and stop planning all the things I wish I were doing. Maybe I simply can recognize these moments that we already have. There are lots of those. Maybe I can appreciate the stillness that is already there – if only I am present.

Special Needs of the "Normal" Sibling

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It happened again. Another seizure that required meds. But this one had a twist: Sarah wanted to be put to bed in the middle of it by Brian – and Brian was holding Catherine.

“Daddy put you to bed,” she whimpered at the door. That’s how she tells us who she wants to put her in bed. She confuses her pronouns, and it’s kind of cute – unless Daddy’s not available – and then it’s a relentless whine.

Ironically, I’d just had a conversation with a potential client and we discovered that each of us was walking this “parent of a kid with disabilities path.” He is way ahead of me on it as his son just turned 21. But he had told me the story of their daughter who is three years younger and had a hard time with her brother’s disability when she was about nine years old. Initially, she hadn’t. But as she matured, she became angry. She finally turned the corner when she got to go to a psychologist and realized, “You mean this is my very own doctor?” Seemed she had some “special needs” too.

That conversation played in my head as I knelt down to Sarah’s level. “Hey Sarah? You know how sometimes when you’re sick, you want Daddy to hold you?”

“Yes,” she nearly whispered.

“Well, Cackie’s sick, and she wants Daddy to hold her. And I want to hold you and put you to bed and tuck you in really special. Can I do that?”

“OK,” she accepted, and willingly let me put her down for the night. I said a quick “thank you” in my mind to my new friend for helping me remember that Sarah has special needs, too. Privately, if I really confess my deepest thoughts, I think I hoped this one conversation would spare us any anger when Sarah is about nine. Crazy, huh?

But then Sarah got up and came to the door again. “Daddy put you to bed!” she whined a little louder.

After asking me to videotape Catherine since we’ve not taped the seizures that require meds in a long time, Brian got up from his chair and began carrying Catherine to her room.  “What are you doing?” I asked in confusion.

“I’m going to put Sarah to bed,” he said.

And I stood with the video camera, watching Catherine seize, amazed at my husband who calmly figured out how to balance all the special needs of both our girls last night.

Daddy Fix It. With Tape!

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Sarah has recently entered a “tear the page” phase with her books. It’s annoying to me, but she seems to get some sense of accomplishment from it.  She’s torn many pages and Brian diligently fixes them with packing tape.  Somewhere along the line, Sarah started looking at every torn page while saying,  “Daddy fix it… with tape!” She has such enthusiasm for the proclamation. And she emphasizes the “With TAPE!” part every time.

I was driving home alone after dropping both girls at Delrey on the morning of Catherine’s most recent IEP meeting (they were nice enough to let us put Sarah in daycare for the day – and the meeting went relatively well). I took a corner too close to the curb to handle the custom-lowered floor. I wrecked our six-week old van on the ramp door side. Ugh! The ramp wouldn’t deploy. The door barely closed. I didn’t even want to tell Brian.

Of course, I did, and the next morning when we had to all load  up for the trip to school, Sarah patiently stood outside the van and said, “Wait!” because she knew the ramp should come out of the door. It didn’t. We started to move toward the van, and again she yelled, “Wait!” but we had to keep moving so we wouldn’t be late.

I tried to explain that I had broken the van and the ramp wasn’t going to deploy. She looked so confused. She kept wanting to wait, so I finally had to pick her up and put her in her car seat so she could ride to school with Catherine. She struggled and screamed, and I finally said, “Sarah, listen to me.” She usually looks at me when I say that, and she did this time, too. “Mommy broke the van. Mommy broke the ramp. It doesn’t work anymore.”

She looked up at me with big brown eyes and in a split second said, “Daddy fix it! With tape!”

My body was laughing, but my soul shed a tear. Some things just can’t be fixed… With tape!

Happy Birthday Sarah!

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Yesterday was Sarah’s birthday. I had hoped to write in this blog then, but work got in the way. Which makes me wonder if now, rather than the Observer, I’m the Executive Mom who puts work before her kids. Yuck.

I actually don’t think so. I actually think I’m pretty balanced about it. Brian might disagree, and he does occasionally ask why I’m coming home so late when I call leaving the office again after 7 PM. But I do try really hard to get to the appointments and be there on the big days, and say prayers every night and kiss and hug both girls every day. Is that enough?

Yesterday, I came home after a pitch rather than going back to the office. I had left the house too early to see Sarah, so I wanted to see her in the afternoon – not just for the bedtime routine. We needed to do cake and candles and presents before she was bouncing off the walls and telling me she had to eat AGAIN just so she wouldn’t have to go to bed just yet.

I had an idea! I called Brian as I neared the house, knowing Catherine was in PT. “What does Sarah do during PT?” I asked. “We usually play in another room,” he said. “Get Sarah ready. I’m going to take her to The Park.” Both of us knew this was a special birthday idea.

Sarah loves The Park. “Park. Park. Park,” she says as soon as the word is uttered. She stands near the door and repeats herself, “Park. Park. Park.” It’s sort of like a puppy. She loves the slides and running in an open football field the best. She likes the swings for a bit – longer and longer each time, actually. But she always tells me when she’s “all done” on the swings. She is never “all done” on the slides or running and twirling in utter freedom.

I didn’t even take time to change from my pitch clothes. Daylight was slipping away, and we needed to go quickly. We ran out the door and headed directly to The Park.

Less than 3 minutes later, I got The Call.

Work.

They needed to talk with me about a presentation we have today. Work. Sarah’s Birthday. The Park. Really? I suppose I could have said no. And that’s what the magazines all say a woman is supposed to do sometimes. Was this one of those times? Should it have been?

I pushed Sarah in the toddler swing until she was “All done.” I had to make my colleagues wait when I got her out of the swing because her feet got stuck. I told them where I was, so they had to put up with a bad cell signal, the other screaming kids, Sarah’s cries when the swing hit her in the lip at one point, me disappearing for a bit to pick her up and give her a hug and kiss her tears goodbye. By the time I finished the call, it was getting dark and cold and I had only a few minutes to sit on the big swings and hold her and repeatedly sing “Happy Birthday, dear Sarah…” as we swung into the twilight sky.

I hope I will forever remember that late afternoon swing. Sarah never told me she was “All done.”

The Stall at Bedtime

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Sarah will always have one “stall tactic” that will work. Shhh, don’t tell her.

Last night, I came home from a day-trip to Atlanta on business. I had caught a cold and seems Sarah wasn’t feeling too well either. She didn’t even play our routine evening game: “Who gets kisses first?” “DADDY!” she usually screams. “Who gets kisses second?” “Cackie!” she’s taken to calling her sister. “Who gets kisses third?” At this point she usually screams and runs across the floor to a special spot in the kitchen where she giggles and squeals and waits for me to pick her up and cover her in kisses. But last night, she just sat in Brian’s arms and sucked her thumb and held BeBe close (her security blanket) and looked at me like I’d just invented this strange greeting.

I changed clothes, and Sarah decided she wanted to eat. We never want her to go to bed hungry, so Brian fixed chicken nuggets for her. Then she asked for strawberries. Then she told us she was all done. Then she changed her mind and decided she wanted applesauce. She didn’t eat much of any of it, and I realized she was stalling.

When she threw her spoon on the floor, she may as well have screamed “I’m all done here, people! Get me out of this highchair.” So I did. And we proceeded with the rest of our nighttime routine. Brush teeth. Read books. Kiss Daddy (though he had gone to get me medicine for my cold). Off to bed.

As we passed Catherine’s door, she looked in my eyes and said, “Prayers?” We usually say prayers with Catherine each night, but Catherine was in bed already when I got home. “We’re not saying prayers tonight, Sarah. Catherine is already in bed.” And then, the piercing cry, “Caaaackie! Caaaaackie!” while she reached up to the door handle and tried to turn it. How can I deny a sister’s love?

Sarah ran in and asked to be picked up and gave Catherine a kiss and hug and said, “I ov you.” As my heart melted, I decided some stalling is completely worth it. And then she went straight to bed.