Why?

BRIAN! BRIAN!

I yelled up the stairs knowing the sound of the fan in the bedroom made my yelling futile.

 

BRIAN! BRIAN!

God, please let him hear me somehow.

 

How can I move to get the oxygen?

 

I fumbled with her head. Ugh – she’s lying in her vomit. I need to get the medicine. This is gonna be a big one. I need to get the oxygen.

 

Oh yeah – Sarah’s door is open.

SARAH! SARAH! GO WAKE UP YOUR DADDY!

 

Silence. Except the retching. And the gasping to breathe. And the crinkle of the plastic protectors lying under Catherine as I tried to move her body to get ready for the medicine sitting in a drawer a mere eight feet away.

 

SARAH! PLEASE GO WAKE UP YOUR DADDY! I swear she’s three years old going on sixteen and sleeps just like a teenager.

 

Set her down and just go get the oxygen and medicine. But what if she rolls off the bed? I can’t put her on her back.

 

Oxygen first or medicine? Medicine.

 

At least she pooped last night the nurse just told me in report, so the medicine will get in there and work really fast, I hope.

 

KY or the stuff in the box? The stuff in the box. I don’t have time to see if the KY is where it’s supposed to be.

 

SARAH! GET UP. GO GET YOUR DADDY!

 

“Why, Mommy?”

 

I finally hear the little voice. Instead of relief, I’m perplexed. Why? What do you mean, Why?

 

JUST PLEASE GO WAKE HIM UP!

 

“But why?”

 

Geez. How do I explain because Catherine needs oxygen since she’s turning blue? How do I explain a seizure? This will be the first one she sees in full force, I think. I just stumble…

 

“Because I need help, please.”

 

Sure enough, mere moments later, Brian rushed down, rubbing his eyes, wondering what he could do. By then, I had the oxygen cannula in Catherine’s nose. She was still in the bed, but the medicine was starting to work. The retching had calmed – at least for the moment. But her eyes were still shaking. Her body still quivered.

 

And I wondered to myself – yeah, what can he do? The reality is that that question sat beneath all my futile yelling up the stairs, around a wall and past a very loud fan purposely blowing to drown out the sounds of nurses moving around overnight.

 

There wasn’t much he could do by the time he got downstairs. He changed her linens as I held her. He gave me a towel to wipe her mouth. But mostly, he was just there.

 

A moment later, the retching started again. He was sitting on the bed beside us while I cradled Catherine in the rocking chair. As I leaned forward to put her body in a better position to vomit, he held her head. It really was helpful. Just by being present, he had helped. And then, because he was present, he was truly able to help – both Catherine and me.

 

After it all subsided, I went to wash out the tray in the kitchen sink. And there I realized that despite my ferocious independence – I really do want help.

Pack it?

I still remember an art project in 7th grade. I don’t have the art project; it has to live in my memory. It was my very favorite piece of all my school projects and my teacher blew it up in the kiln. Gone. Overnight, all my hard work and pride blew apart into little pieces that now hang in my memory as what the piece actually was. It was an abstract sculpture of my initials, but the fact that it’s gone makes it live in grandeur in my head. It probably wasn’t really that great.

Today, it’s exactly one year since Catherine’s surgery and I find myself thinking about that art project. The surgery anniversary really has nothing to do with the art project, but I realized the date and sometimes things like that make Catherine’s world more real to me. So much is happening in our lives right now, that it’s nearly impossible to think back to that day of surgery. But I do. And in nearly the same moment, I think ahead to a move we’re getting ready to make. We’re finally moving from the 850 square foot house that’s enclosed our little family for ten years into a big, spacious 3000 square foot open floorplan that will immediately enable us to exhale. But first, we have to pack.

I glanced around the kitchen this morning and caught a bottle filled with colored sand on the stove. You remember the type. The bands of color fill the bottle – red, yellow, white, blue, purple, green, orange – over and over. A label on the bottle says, “Catherine, Summer, 2011.” And I thought for a second, “Well, I can trash that so we don’t have to move it.” And in nearly the same thought, I recalled my 7th grade project.

What if this is Catherine’s sculpture? What if she had the best time making it and she remembers the feeling of the gritty sand? Maybe they put fragrance in the color and she thinks about that. Maybe this is something meaningful to her. I paused for a moment because I don’t know. And I don’t know if or when I’ll ever know whether anything is meaningful to her or not.

So, do I pack it? Or throw it in the trash?

The Way the World Works

I find the way the world works to be quite remarkable at times. Frequently, actually.

This week has been especially difficult at work. Yesterday, I had a late afternoon meeting out of the office, and rather than go back when it concluded around 5 PM, I went home. The work situation had kept me from getting home in time to hug my kids for numerous nights, and I wanted simply to be with them – especially Catherine. She goes to bed earlier than Sarah, so I had missed tucking her in and reading our story about “small people with wings” and saying prayers. I also missed holding her and just telling her I love her. You know – the little things.

I drove home happy that the difficulty was more or less behind me wondering what the best use of the extra time would be. I wanted to take Catherine for a walk, frankly, but we had a heat warning that dismissed schools early, and it was still over 90 degrees when I was driving home about 5:30. I turned the corner onto our street and was surprised to see our therapist’s car in the driveway – it wasn’t her normal day to come. “Yay!” I thought. “I can see what’s going on in therapy.”

Our therapist had emailed me recently to tell me about the progress Catherine was making – one of perhaps two times she’s proactively emailed me with news of great progress. I literally slammed the car in park, left my stuff in the car, and ran into the house afraid they’d be wrapping up and I’d just catch her helping  Catherine out of her equipment.

God had other plans.

I opened the front door still wondering what I might be able to do with the girls that would be special since I was home early. And this is how the world works. I got to see Catherine standing tall in her gait trainer getting ready to practice walking. I made it. With no knowledge of what was happening in my house as I was driving home exhausted, I got home in time to watch my little bug, my butterfly, my teeny tiny daughter walk approximately thirty feet, and she did it three times! Take a look at this video if you have about 3 minutes and you’ll get to see a miracle. An honest to God miracle.

There is a popular country song that refrains the lyric, “I saw God today.” Yesterday, I knew that to be 100% true.

Fly, Catherine, Fly!

Normal

I’m struck by how recently often I feel normal. And how great it feels. Yesterday, we went to a birthday party for a friend of mine turning, ummmm, 30. Until a couple of months ago, I hadn’t seen her in nearly seven years. We saw each other again because she lives near a park that was built especially for kids with special needs to interact with typical kids, and I wanted to see what it was like. We had a great time,  as if we never missed a day in our friendship, and her little boy and Sarah and Catherine played like old friends.

Yesterday at the party, we knew no one other than her immediate family. I was a little nervous because entering a situation with a wheelchair can be awkward, to say the least. One of my first memories of a similar situation, we were encouraged to “park Catherine over here where she’ll be out of the way.” I almost left that event.

But this could not have been more different. The invitees embraced us – literally. They hugged Catherine. They kissed her on the cheek. They talked with her like she might actually talk back. Sarah played with other kids and tried to learn badminton and soccer on the lawn as she ran around in her Lily dress. A wonderful British man welcomed Sarah into the game of soccer he was playing with 10-year-old and 4-year-old boys. And while I helped Sarah figure out which direction to kick, I looked up to see four women surrounding Brian and Catherine and talking with him, while he laughed. Shortly after that, two of them walked over to me on the lawn and hugged me and kissed my cheek as if we’d known each other for years. This was our first meeting, and I hope it will not be our last.

All of this made me recall a few other recent “normal” events. We went to dinner Friday night for possibly the first time ever as a family of four. We went to Kyoto, a hibachi steakhouse, that both fascinated and scared Sarah with the fire. We wheeled Catherine right up to the table and she sat there just like anyone else would – not at an angle, not pushed off to the side, but just like anyone else.

Normal in a Japanese Steakhouse.

We’re recently back from our first family vacation, where we went to San Antonio, TX. I plan to write about that in its own post, but until then, know that the word that pops into my head as I remember it is, “MAGIC.” We rode rides at Sea World – even Catherine got to ride. We went for ice-cream. We got cranky in the heat. We rode on the boats at the Riverwalk. And we had a great time. Just like a normal family.

So this made me think about what is normal? And why do I feel so especially great when it happens? Sure, sometimes we need special treatment because of Catherine’s situation. For example, my friend who had the party had emailed me in advance about tricky parking at their house. She had already thought through our need to park close and that the van ramp exited from the passenger side, and she figured out a way for us to park easily, even though the many other guests had to park further away. Her patio had steps and several men simply picked up Catherine in her wheelchair and carried her up so she could be with the party and not left with a small group in the yard. They did it again when rain threatened and we had to move inside the house. They just up and did it. So, yes, sometimes we do need special treatment.

But sometimes that special response leads to normal. If it gets us to the place where we can just be part of the way anyone else would do something, it feels like Magic to me. It makes me breathe easier. Literally. And my hope expands. My soul lightens. Relationships deepen. When Catherine’s disability ceases to be a problem in any given scenario, I feel normal. But my sort of normal feels really special.

So, maybe feeling normal is one of our family’s special needs.

And Then, Reality Hits

Brian and I are just back from a wonderful respite weekend away to National Harbor and Old Town Alexandria. We try to time our respite weekend over our anniversary, and this year hit perfectly. Sunday, we celebrated 18 years! The trip was perfect in every way. Good food. Lots of laughter, which we don’t seem to have time for in our day-to-day lives. And great sleep in the Westin Heavenly bed. Say what you will about the Gaylord, but I sure like the Westin beds with all their fluffy decadence. They provided the perfect backdrop for Brian and me to reminisce about our wedding day. It’s amazing what you forget… but more amazing what you remember!

We came home to find the babysitter relaxed holding Catherine. Sarah was on the computer playing games on the Sesame Street site. Have you seen that one? If you have a toddler, take a look. It’s fantastic. All seemed right in the world, and we were so relaxed I just felt tired. I even told Brian on the way home, “I’m not sure I like being relaxed. It just makes me feel tired.” But maybe that’s what normal feels like, and I just don’t realize it.

We invited Lori to stay for dinner and had a cheerful meal of hotdogs, tater tots and pears on the deck on a cooler-than-usual late May evening. I really did think my life was perfect in that moment reflecting on our weekend together. Brian put Catherine to bed, and Sarah and I had what has become a tradition of milk and cookies on the sofa before going to bed. We each drifted off to sleep quickly. I suppose being “relaxed” will do that.

I woke this morning to find Catherine on the sofa. I looked at her and thought her face looked a little waxy, but I figured her allergies must have been a problem so the nurse brought her to the sofa to help her settle. Every time I walked past, I thought, “Something doesn’t look right.” But she was sleeping hard, so I chalked it up to allergies.

When I got report, the nurse asked if I were up for the seizure. “Crap!” I thought. She’d had a seizure at 10:30 PM and Brian dealt with it alone.  I hate that for him. I hate it worse for Catherine.  What “didn’t look right” was her body drugged with Diastat. I marked it on the calendar where we track them and found our old neurologist’s info online. He’s moved to Hershey, PA, and I think we’re going to need to go see him. Reality hits hard when your relaxed at 7 AM on a Monday morning.

Hate

The most profound thing I remember about the word hate occurred in high school. I had a Spanish teacher who I thought hung the moon. Mr. Robinson at CCDS (we called him “Robo”) is absolutely the precise reason I wear a seat belt today. He told me that kids of parents with reverse roles were proven to do better, and I actually remember his reasoning why. He taught me a language I still try to speak today and dearly love. But all of that is another story. He also taught me, “It’s not nice to hate.”

You know how it goes. In high school, kids “hate” a different person or ideal or subject every 14 seconds. And any time he heard an outburst from one of us, “I hate that program,” “I hate vocab tests,” “I hate the coach at CLS (the rival school),” “I hate that boy!” we always – and I mean ALWAYS – heard him say “It’s not nice to hate.”

In time, I grew actually to believe that. And as I reflect over my life, there are honestly very few things or people that I hate. I’ve always thought it was such a dirty, beneath-me emotion. I’ve always sought the good in a situation or a person. I try to give them the benefit of the doubt and try to consider what I would do if I were in their shoes.

Sorry Robo. This time I hate.

I can’t understand how the people who supposedly come together to determine what Catherine needs in the school environment during the IEP process can make the determinations that they do and then close their eyes at night feeling like they did a good job that day. I need to write about this – confess my hate – to try to understand.

• Maybe they think they help all the other kids so one they turn their back on doesn’t really matter.
• Maybe they are super afraid of forces at work that would cause them to lose their jobs.
• Maybe they realize they only have so much money and they want to save it for the kids who show faster progress.
• Maybe they… I can’t really think of any other reasons they could actually say the things they do.

I still contend that if I didn’t have to work, I would take on the special education system in this country for kids with severe disabilities.

I hate the ones in a certain county at a certain school. HATE.

I am acutely sorry to confess that. I am healed today by walking into our home, seeing a PT working with Catherine in her gait trainer, and watching Catherine take repetitive steps at the end of an hour-long session. This stands in stark contrast to the PT who doubted Catherine could “tolerate” more than 45 minutes of PT. This stands in contrast to the PT  in the county who wanted to REDUCE HER SERVICE HOURS. Fortunately, to be fair and a balanced journalist, at least she finally agreed to give her the same service hours she had last year. But really, why should I have had to argue that she needs at least the same if she’s not met her goals yet?

Why do I have to argue and prove that Catherine needs a 1:1 aide to access her educational curriculum? Am I the only one who thinks a blind child who can barely move her hands needs help from someone who consistently knows her and can read her subtle communication cues? The principal actually said that they couldn’t promise a dedicated 1:1 aid because, and I quote, “What if the aid was sick for a day? We can’t be sure she can work every single day.”  I told her she was absurd.

I remain grateful for all the AMAZING PEOPLE who help Catherine. The staff at Delrey. Our attorney. Our private PT. My friends and family. And my colleagues at the office who shoulder me at times. So, if I focus on these feelings, perhaps the hate will disapate. And, for you, Robo, I’ll repeat: It’s not nice to hate.

Maybe so. But it might be necessary not to be nice this time.

What Not to Say

I recently read a blog post from a woman about what not to say to a parent of a child with disabilities.  I recalled thinking after I read the post – and I actually replied to it myself – that I didn’t feel the way she did. In fact, I like it when people ask me questions about Catherine. It’s more honest, I believe. And I prefer to deal with things directly and then get past the discomfort but at least have the authentic thinking and feelings and questions out there.

But just this week, I learned what not to say to the parent of a kid with disability.

Catherine has a double ear infection and a busted ear drum. “Perforated” is the medical euphemism, I believe, but the reality is that it’s busted. I ache that we missed it. One of her caregivers noticed green fluid coming from her ear, so  Brian took her to the doctor. She’d had a fever for 5 days, but with all the flu and cold in our house this winter, we just thought she was simply running a bug. Ugh! I feel like the worst mom ever.

When Brian told me about the diagnosis as I drove home from work, the first question I asked him was, “Will it affect her hearing?” He said the doctor said not, but since she is already so sensory deprived, that answer didn’t really satisfy me, and it won’t until I see that she responds the same to sound over time. So even though the doctor says not to worry, I’m not so sure.

The next day, after her diagnosis, I was taking report from the nurse who had watched her overnight. She’d had a good night, and he relayed that he understood what bad ear infections she had. “Yeah,” I said, “I just hope it doesn’t affect her hearing.”

The nurse proceeded to tell me a story about himself  incurring an ear injury after firing a shotgun and experiencing some hearing loss. “It was permanent,” he said. He must have realized what he’d said because he added, “But only at certain frequencies,” I suppose thinking that might make me feel better.

Don’t do that.

Don’t tell the mom of a child with severe disabilities about your experience losing the very thing she hopes her kid doesn’t lose. Even if it only happened to you just a little bit.

Catherine and me on New Year's Day.

Three Photos

Don’t really think any more needs to be said.

Happy Birthday Catherine!

About 7 days old.

7 years old.

Sisters Goin' Out

Happy Birthday Catherine!

It still surprises me that seven years ago, at this time, I was in actual labor with Catherine. I even gripped the bed rail and said, “I’m ready for the drugs.” I still remember calling my Mom and telling her it was going to be OK. How did I know it would be OK? Looking back, I had NO IDEA what we were getting ready to face. But somehow, deep inside me, I knew it would be OK.

Catherine is 7 years old today!

I think about all she’s taught me and brought to my life, and I’m so extraordinarily grateful at times I feel like I will bust. I had a reporter ask me not long ago what I would change about my life. Of course, I said, I would make it so Catherine didn’t have all the disabilities she has. But that wish is for her. For me, I wouldn’t want to change a thing. I would have missed out on all the amazing things I’ve learned about love, and God, and friends, and hope and courage, and strength. And yes, pain. But the painful parts quickly escape memory as I deliberately choose to focus on the gifts she has brought us. My desire not to change anything would actually be quite selfish. So, God, if you’re listening to this prayer, I pray you’ll heal Catherine completely – in the physical sense of the word. Amen.

So, Catherine, we will open your gifts today. I hope we’ll be able to blow smoke in your face and let you smell your Happy Birthday candles. Maybe we’ll get some ice-cream for you to play with and cake for you to squish in your hands. But despite all we try to give you, the reality is that you give me far more gifts than I could ever wrap up for you.

Happy Birthday Butterfly! Look at you fly.

A Post on Babble.com

Picking out a wheelchair with your daughter is a lot like picking out a prom dress — there are loads of choices, it doesn’t happen often, you imagine the time she’ll have in it and hope it’ll be magical. And then it has to fit well, of course, and… (read more of the essay here).