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A Birthday for a Blind Girl Who Barely Moves

March 9, 2013 by Ellen Moore 9 Comments

Sarah has her birthday parties planned until she is 7 years old. This year, she planned bowling, next year when she’s six, she wants her party at school. And when she turns 7, she’s planned a craft party at Michael’s in their special birthday room. Easy. What do I do for Catherine, though, who is blind and can barely move?

Planning parties for Catherine is tough. I want them to be relevant to her and fun for her, and that’s hard to know. I always have to manage Brian’s question of “Why are we doing this again?” And I’m left to wonder, “Who do we invite?” Mostly, though, I struggle with figuring out how to make it relevant and enjoyable for her. I succeeded in that when she turned 3 and we had a pool party and rented the therapy pool at Severna Park Community Center. They did an amazing job and even cleaned the pool deck and all the toys because they knew getting sick was harder to deal with for kids like Catherine. We also had a sensory event that I created. Normal kids and disabled kids played together and it was magic. I wanted that to happen again. And I wanted Catherine to have fun.

I read an article in some girly magazine that said a mark of maturity was knowing how to throw a party where you didn’t do all the work. True confession: Part of the reason the party for Catherine was so hard was I just didn’t have the energy to pull it all together.  This article talked about how to pick a theme and ask guests to participate. That’s when it hit me! What if I could invite people to bring some sort of musical instrument or something that made noise from their basement or Goodwill – nothing fancy – and I’d find a “crazy, creative music teacher” to orchestrate whatever came into the house. I even thought about prizes for the instrument from furthest away in the world, and the most beautiful sounding non-instrument and the smallest sound-maker. I could see it all; I just had to find the teacher.

Immediately, I sent emails to some friends. No one knew the right person and I almost gave up hope. Then, I was sitting in the lobby of ballet class and asked some of the moms there. I didn’t find the “crazy teacher.” Instead, someone suggested drumming. Hmmm – that could be interesting.

Long story short, I found Nellie Hill – a certified drumming facilitator who had worked with kids with special needs and loved the idea of having everyone bring something – she called it a “Found Sound.” She immediately embraced my idea, told me she’d bring the drums and we picked a date. Wow! It was amazing.

I’ll let the pictures tell the story from here. I wound up going overboard on decorations and food and the theme. The energy just came. Our whole house filled with energy and Catherine opened both eyes, relaxed enough to  let us move her arms up over her head (she normally doesn’t do that!), and even the “normal kids” – siblings of some of the invited guest, had a blast. We had 5 kids with disabilities and their parents. It was a treasure to figure out how to fit four wheelchairs in the house and help these families feel a sense of togetherness that is often void. I hope everyone had fun. I did. And I genuinely believe Catherine did as well.

Food table treats

Music Bottles

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Party Favors

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Brailled bags to hold party favors

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Drum sticks! Get it?

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Look at all the drums!

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Catherine playing chimes.

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Nellie Hill and me. God bless Nellie Hill.

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Opened with a story – Be Quiet Mike!

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Figuring out how to play drums.

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Family fun.

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Gettin’ down with Nellie!

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Sheer happiness!

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Instruments and sound makers from all over the world.

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A perfect cake for a 9 year old.

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Really? Every year you make me do this!

Happy Birthday Catherine! I love you.

Filed Under: Making a Difference Tagged With: Birthday, Birthday Party, Blind, disability, disabled kids, hope, kids, Nellie Hill

Suddenly It Hits Me

February 4, 2013 by Ellen Moore Leave a Comment

It’s not quite a normal morning. As I reach for the cereal, I see it. I get the flash of Brian, dressed in blue scrubs hanging back in a room where doctors are trying to help our baby girl into the world safely. I’ve had this flash every year, for nine years now. It’s supposed to be a happy day. I promise myself to try to make it so.

 

We hang balloons all over Catherine’s door so she can hear that it’s a special day when she comes out of her room. Sarah and Catherine’s nurse and I sing “Happy  Birthday,” and we take pictures to mark memories. I feel a pit in my stomach, though I smile through it. We line Catherine up beside the clock and count down until exactly 8:25 AM, the moment they pulled 1 lb, 9 oz of baby girl out of my body. Nobody would say she was healthy. How could they? I don’t ever remember  that part. I do remember asking what time she was born over and over again – or was that when Sarah was born?  I definitely remember Brian – standing in the wings as they rolled me into an OR that had been readied for an emergency C-section to save not just Catherine’s life, also mine.

 

I remember being in recovery. I remember a door opening and Brian being on the other side of it. He had the list of people I had asked him to call to deliver the news. Catherine had arrived. Those calls must have been impossible. Rather than joy and excitement, I’m sure they were filled with questions and concern. There is no way Brian could have answered the only real question everyone must have wanted to know – would she be OK? He gave the stats and they were so tiny I can only imagine how shocking the news must have been to family and friends. And then a friend came.

 

I remember her on the other side of a door that opened and closed, too. I remember being so grateful she came. That’s all I remember about that visit.

 

The next memory feels like it must have been hours and hours later. I eventually got rolled in to the NICU to see Catherine. I can barely remember her through the porthole of the isolette. What I really remember is crashing into the doors of the NICU and someone apologizing about it. I think I remember her. It must be a memory because we only have 2 pictures of her actual birthday and what I see it my mind is not one of those pictures. I have hundreds of Sarah. And we only have 2 of Catherine. I am thankful for those two.

 

As I desperately try to remember, at the same time, I want to forget. Writing this brings tears flowing down my face with the intensity of a river being released from a dam. I can’t keep them silent enough, and Sarah comes running to the computer to ask, “What’s wrong, Mommy? Why are you sad?” I tell her they are happy tears. And she reaches up to wipe one away with the back of her little hand. It’s like a movie scene. Just like the scene in my head of Brian.

 

Happy Birthday, Catherine. However you came into the world. I am so glad you are here!

Filed Under: Acceptance - or Not, Best Of Tagged With: Birthday, cerebral palsy, disability, kids, premature birth

Happy Birthday Catherine!

February 4, 2011 by Ellen Moore Leave a Comment

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.

Filed Under: Perspective Tagged With: Birthday

Six Years Ago – Today

February 4, 2010 by Ellen Moore Leave a Comment

Think back.

What were you doing right now – exactly six years ago today?

Most of you won’t even remember. A few will. I certainly do.

If you were the nurse who made me promise not to be scared until you told me to be scared, you are telling me it’s time to be a little scared – and to call Brian.

If you were a NICU nurse on duty, you are prepping for one of your smallest arrivals – just a normal day for you, but not really.

If you were a NICU neonatologist, you are telling a new mom what to expect, knowing she can’t hear a word you are saying right now.

If you were my mom 500 miles away, you are getting a terrifying call and starting to pray.

If you were my husband, you are being told to put on dark blue scrubs and to stand “here” so you’ll  be out of the way.

If you were my OB, you are making decisions fast – probably not even realizing this one would hold a record for you.

If you were me, you are scared. And numb. A little excited. But mostly unaware of what is about to happen. Really unaware.

But –

If you were Catherine, you are thinking, “Hey, I know it’s early, but I love my Mommy and Daddy so much that I want to come out and meet them. Trust me. It’ll be alright.”

And it is.

Happy Birthday Catherine!

Filed Under: Love Tagged With: Birthday, hope, prematurity

Happy Birthday Sarah!

January 29, 2010 by Ellen Moore Leave a Comment

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.”

Filed Under: Best Of, Moments Tagged With: Birthday, Sarah, sister

Hi, I’m Ellen

I’m just a mom making my way, but my way is a little different. And yet, very much the same. I have a 13-year-old daughter, Catherine, who was born at 25 weeks and weighed one pound, nine ounces. Despite a very severe brain bleed, she lived and inspires me every day with all she works so hard to do... Read More…

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