Just Wait and See

A blog about hope, despite the disabilities.

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What Causes Stress?

July 4, 2017 by Ellen Moore Leave a Comment

Psychologists will tell you, according to Darren Hardy in his best seller, The Compound Effect, “Nothing creates more stress than when our actions and behaviors aren’t congruent with our values.” I think I disagree.

I lead a business book group and we just read this book because it had dramatically altered the life of a member’s husband. Our group creates the questions for the discussion by each writing two questions for the bowl and we pull the questions out for discussion. It’s a great way to uncover broad aspects of a book that a single leader might miss. This was one of those situations.

Page 66. I missed it. I mean, I read it, sure. It didn’t settle into my bones though until someone asked a question about it. I struggled with it so much that someone asked me why I was struggling with it so strongly. Great question.

Changing the Definition of Stress

A member who agreed with the premise (and most did), said, “I want to hear the situation that proves this wrong,” (or something close to that). Well, I said, Catherine’s life causes us a lot of stress and I don’t think that has anything to do with my values. “For example, if a nurse doesn’t show up, that creates stress for us,” I said. “That doesn’t have anything to do with my values,” I added. I didn’t want to go too deep about it, but I was also thinking that when Catherine has a seizure, that causes me tremendous stress and I don’t think that reflects on my values either. The members quickly reframed the point and said that perhaps the thing that causes the stress is a misalignment with expectations. I could certainly agree with that!

I kept wrestling with the written premise, though – and more importantly the very good question of why this troubled me so much. Perhaps it’s because I know how much stress I feel and the possibility that meant my life isn’t congruent with my values really disturbed me. In fact, I am very intentional about living my life to reflect my values.

One of the things I’m trying to learn – consistent with my values – is to be true to who I am, rather than some notion of who I’m supposed to be. And in being true to who I am, I am learning to keep, file and delete some ideas that come across my plate. I researched the premise a bit and can’t find an original source to “the psychologists.” I could find several google pages of Darren Hardy attributions and people accepting it as fact. Maybe I could look a little harder. I think in this instance, this is going to be one of those ideas I’m simply going to choose to delete – with apologies to Darren Hardy!

Filed Under: Perspective Tagged With: disability, disabled kids, hope, stress

Why Celebrations Matter

March 5, 2016 by Ellen Moore Leave a Comment

My brother inspired me to pay more attention to celebrations. He said, “You should keep a bottle of champagne in the fridge at all times, so you can celebrate at a moment’s notice.” That’s great advice. And I do have champagne always on hand. Champagne wasn’t the right mode of celebration this time, though. I wasn’t really sure what was.

Catherine was selected as Student of the Month in February at her school, Cedar Lane. Oftentimes, if I’m honest with you, I wonder if these little things are just to help parents feel “normal” in a world of abnormality. This was different though. The certificate even said so: For your continued independence in PE. Wow! That was real! I had seen the videos. She really was doing more and more in PE. Frankly, she’s a little athlete and quite competitive.

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I was thrilled. I gave her a big hug. I couldn’t be more proud of her and I told Sarah when she came home from school. “Guess what? Catherine got Student of the Month!” We decided we needed to celebrate. But how? Champagne wouldn’t have been right for Sarah either and it certainly didn’t fit for Catherine and this situation. We wanted to do something special for sure.

The thing that kept coming to mind was to go to Chick Fil-A. What kid doesn’t love a trip to CFA? Well, maybe Catherine. The reality was that I was having a hard time thinking of something that would be fun for her and could be spontaneous (aka: relatively easy!) for me. Ultimately, I decided it was about the celebration more than the activity of the celebration. So that was it. Chick Fil-A, here we come!


Sarah put Catherine’s medal on her and we loaded up in the van (Brian was at class) and off we went. When we walked in, I told Catherine the smells were in celebration of her. We told the woman at the counter that we were celebrating. She gave us a great big “Good job!” and we sat down at our table. Truth be told, it was a relatively calm, quiet celebration. Catherine even started dozing a little because we were past her bedtime by the time we got out of the house. I wondered if it was all worth it – getting her bundled to go out in the cold. Fighting the doors in and out of the house, the van, the restaurant. Trying to keep her awake. Trying to think of things to talk about with her to make it feel like we were celebrating. The reality is that I will probably never know if it mattered to Catherine. I think that’s OK. It mattered to Sarah and me. Congratulations Catherine! We are so proud of you.

Filed Under: Doubt Tagged With: celebration, cerebral palsy, chick fil a, disability, disabled kids, special needs

How to Achieve Your Goals in One Simple Step

October 1, 2015 by Ellen Moore 3 Comments

Now that I’ve put it out there, I feel an obligation to write. I said I’d be writing more to anyone reading this and so I feel like I must make that happen. Just because I said I it was a goal of mine.

I’ve heard it said that you share your “do more” goals with friends and keep the “give up” goals to yourself. Or is it the other way around? I sort of think that regardless of the type of goals, we need to share them with someone if we really want to make them happen. For example, we have a goal-setting dinner as a family on New Year’s day. It’s part of our tradition with collards and black-eyed peas and driving to the beach to have a picnic in the freezing cold where we can feel the energy of a fresh start to the year. We each think about what we want to make happen for the year. We write it on a piece of paper and tuck it into these glittery boxes that make the ritual seem extra special. Even Catherine sets some goals.

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Usually, we keep the goals private. I’ve never pushed that point with the family as I respect each person’s privacy with their own goals and wishes and dreams. I even wish there were a way Catherine could write goals on her own so she could keep them private if she wants. A couple of times a year, we pull out the boxes at dinner and each look at what we wrote in order to make sure we’re on track to hit them by the end of the year. Sometimes they get discussed. Many times, the goals remain special and private.

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This year, we had set a goal to travel internationally, so we made that happen. We had shared that goal with each other and knew it was in our goal boxes. When I left my prior employer and had no income, Brian and I discussed whether to cancel the trip. Knowing it was a goal in our boxes, I thought about it a little differently. There was already an expectation we would make it happen within the family – and so we did. And wow am I so grateful we did!

I am coming to believe that it really is more powerful to share your goals with someone – all of them. People want to help when they hear them. People want to encourage you – hold you accountable – help you make it – all because it seems it’s human nature to want to see people do what they say they want to do. And sharing the goal seems to set an expectation in the mind that it will happen. I wonder if neuroscience can prove that yet?

I think this time, in January, we may do it differently and share our goals with each other. Because a goal shared is much more likely to find its way to accomplishment. Take a risk today. Share one of your goals with someone and see what happens. If it’s too scary to tell your spouse or best friend, then tell a stranger waiting in the grocery line while you’re chatting. Sometimes it’s easier to share the big stuff with someone who isn’t so intimate.

I find that the act of sharing my goals – as wild and “impossible” as some of them are – starts to build hope. And hope builds action. And action brings results. And that gets us past our own disabilities.

Filed Under: Best Of, Hope Tagged With: beach, cerebral palsy, disability, goals, hope, hope disability goals

Prayers Are Working – I Guess

December 4, 2013 by Ellen Moore Leave a Comment

Looks like the prayers are working – ugh. Catherine had a bigger “tremor” last night and they told Brian today that it looked like a seizure. They told him we would probably start a new medication tomorrow. Just now, she had a 25-minute “tremor” and it was so hard to watch! Usually we hold her so I don’t usually see her little face. I’ve only ever heard about people saying “their eyes rolled back in their head” and tonight I saw it. It was my little girl.

As I watched – significantly aware there were people in a control room watching her and me, I remembered back to a presentation I made at Christ Church in Charlotte. It was the same presentation I made to my home church in Severna Park. In Charlotte someone asked me “What makes you angry?” I replied quickly that I didn’t really feel anger. I went on to take the next question and stopped mid-answer and said out of the blue – “Seizures. Seizures make me angry.” They did again tonight. I hate them and they scare me and I wonder what is happening in her experience of it. Does it hurt? Does she want to be held? Can she hear me? And feel me holding her hand? Is anything I do making any of it any better?

Maybe someone here can answer those questions for me. For now, she sleeps like she hasn’t a worry in the world.

That’s right, Catherine. Give Mommy all those worries and you sleep in peace, little bug. I love you.

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Filed Under: Doubt Tagged With: disability, Epilepsy, Hopkins, kids, seizures

Prayers Are Working – I Guess

December 4, 2013 by Ellen Moore Leave a Comment

Looks like the prayers are working – ugh. Catherine had a bigger “tremor” last night and they told Brian today that it looked like a seizure. They told him we would probably start a new medication tomorrow. Just now, she had a 25-minute “tremor” and it was so hard to watch! Usually we hold her so I don’t usually see her little face. I’ve only ever heard about people saying “their eyes rolled back in their head” and tonight I saw it. It was my little girl.

As I watched – significantly aware there were people in a control room watching her and me, I remembered back to a presentation I made at Christ Church in Charlotte. It was the same presentation I made to my home church in Severna Park. In Charlotte someone asked me “What makes you angry?” I replied quickly that I didn’t really feel anger. I went on to take the next question and stopped mid-answer and said out of the blue – “Seizures. Seizures make me angry.” They did again tonight. I hate them and they scare me and I wonder what is happening in her experience of it. Does it hurt? Does she want to be held? Can she hear me? And feel me holding her hand? Is anything I do making any of it any better?

Maybe someone here can answer those questions for me. For now, she sleeps like she hasn’t a worry in the world.

That’s right, Catherine. Give Mommy all those worries and you sleep in peace, little bug. I love you.

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Filed Under: Doubt Tagged With: disability, Epilepsy, Hopkins, kids, seizures

Trifecta of Goodness

November 3, 2013 by Ellen Moore Leave a Comment

The past sixty days have been hard; I’m not going to lie. Perhaps the fact that I’ve not written much is evidence of that. Shutting down a business isn’t easy or fun, so I’m especially thankful for the extra-good blessings as Catherine continues to recover. In a nutshell, she’s given us three spectacular gifts over the past month. And each one has been sweeter than the prior. She took her first steps after surgery, we went camping for the first time since Sarah joined our little family, and – oh yeah – Catherine started to sing. Yes, I’m serious.

Think about this for just a minute. Catherine’s second surgery was 8/21/13. And remember that was the second time she was cut from tip to tail as they exposed her spine in a surgery described akin to quadruple bypass open-heart surgery in an adult. So, imagine my sheer joy in watching Catherine take her first steps only 7 weeks after she survived that risky day in the OR. (In case you missed it, you can click on the green link in the prior sentence to watch). And then take a look here – this is a close-up video of the quality of her steps. You’ll see precision in the heel-toe placement of her steps. Even our therapist was impressed. And in case you don’t want to watch the video, I’ll share the below images so you can see how nicely she stands in her gait trainer and how great she looks overall. No doubt, I am incredibly grateful. But keep reading…

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Catherine standing tall 7 weeks post-op.

 

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Look how straight that back is!

 

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Holding her head up on her own!

 

Next, we went camping. If you know even one thing about me, it’s that I love the outdoors. When Catherine was born, I sold my soul to the Devil and we camped in a camper rather than a tent just so we could accommodate Catherine AND I could get outside. Since Sarah was born, though, we’ve only slept one night outdoors as a family and that was in our backyard – even though we got a family tent years ago. I had no idea how much I missed it until I went. Thanks to an amazing friend who somehow knew I was going to need this more than anything I could imagine, we went to western Maryland and spent two nights in the pouring rain and had a blast! My entire being came back to life, and I came back with a restored soul. Seriously – it was that good for me. Just take a look at some of these photos. I actually asked for the one of me cooking to be taken because I wanted to remember that feeling forever.

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Catherine has the best seat in the campground for a story.

 

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The tent leaked and we stayed dry anyway thanks to Brian who provided creative engineering with tarps and Gore-tex over the leaking parts. Thankfully it wasn’t too cold!

 

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Sheer happiness! Pancakes and bacon, anyone?

 

And then, as if the month couldn’t get any better, we got to visit with Dr. Jan Van Dijk, the world’s authority on reaching deafblind children. He was even knighted by the Queen of the Netherlands for his work and he received the Anne Sullivan award (you do know who she is don’t you?) I called him the Special Needs Whisperer, and he came all the way from the Netherlands to see Catherine. Catherine can hear just fine, fortunately. She’s registered with Maryland’s Deaf Blind Connection because of the difficulty reaching her given her extreme challenges with communication. And Dr. Van Dijk – I’ll just call it miraculously – got her to sing!

I have to confess that watching him, I was uncertain. I sat with the eyes of our home-school administration wondering what they would think about him and anything he’d say. I put on my most scientific hat and watched only for evidence. I stuffed hope down deep inside me and just waited for any evidence to appear – or not.

Repeatedly, he asked her yes/no questions and got her to raise her right arm for yes in appropriate ways. I wanted to believe this was purposeful. I really did. It was hard to deny the frequency and consistency of her response. My scientist remained skeptical, though. I even asked him, “How do we know this is purposeful?” His reply was simple. “It looks to be based on observation consistent enough that I believe it is.” He paused as if letting his accent sink in a bit. “Do you?” he asked. “Yes,” I had to confess, wondering what Brian thought of it all.

He asked us about her MRI and what it looked like. He mapped what he observed her doing with what we told him about her brain. “It’s all there, but it’s squished you tell me,” he kept repeating. ‘Squished’ is exactly what it looks like on the MRI according to her neurosurgeon and we had explained that as I drew a picture of her brain as I’ve seen it from her MRI. “Well then, we must try music. We don’t know how, but music is the way to reach her.” I looked at Brian acknowledging that Dr. Jallo had said the same thing when Catherine was just a baby.

He went to get his Ipad,  found some classical music, and he started to play the music on her hand. As the music built, he tapped her hand more forcefully. When the music lighted, he tapped her hand more lightly – like a feather stroke against her skin. After a few minutes of this as I was watching wondering what, if anything, would happen, she lifted a finger and uttered “aaahhh.” Dr. Van Dijk’s response? “Wow!” And I captured the moment on video.

“Oh, you want to sing, Catherine?” He proceeded to tell her the story of a deaf girl everyone said couldn’t sing who started to sing. Interspersed in the story, he listened for her to sing more. As time went by, he began repeating her sound, letting her lead. This went on for some time – so long that my skeptical scientist eventually retreated. My “mom” came back out, and I wept. Not the tears that sometimes come when it’s obvious I’m expected to cry. But tears that had been stifled because I’d started to believe we’d never reach her and be able to communicate – tears that had hidden underneath lost hope. I have to confess thinking about it weeks later. My little girl can sing. Take a look – or rather listen – and see if you agree.

Filed Under: Hope Tagged With: Camping, disability, hope, outdoors, sing, van Dijk

Dream Catchers – Catching some dreams for us

June 2, 2013 by Ellen Moore Leave a Comment

Catherine joined a softball team!

What? How is that possible? Well, take a look at some of these photos and see how cool it is. The best part is the whole family gets to play together – well, when I’m not behind the lens 🙂

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Also, remember that we’ve got only one week left to raise money for Bello Machre in our walk on June 8. If you want to give (half the money you give goes DIRECTLY TO CATHERINE!) – just click on this link below https://bellomachre.ejoinme.org/26526

Thanks all!

Filed Under: Normal Tagged With: cerebral palsy, disability, disabled kids, kids, outdoors, softball

Time to Raise a Little Dough – and maybe get back to Disney?

May 19, 2013 by Ellen Moore Leave a Comment

Hi all,

I don’t normally do this on my blog. This is a really great fundraising deal though, so I’m working hard to make it happen. Catherine gets help from Bello Machre and we’re walking on June 8 to raise money for them and for Catherine. The cool part is that Catherine gets HALF of the money we raise directly to her. AND if we raise $5000, our family gets to go to DISNEY! It would mean a lot if any of you reading could consider a donation and consider spreading the word to help raise some funds for this great organization and for Catherine directly. We use them for care and services and they enable us great peace of mind!

I’m in the process of editing some photos of our recent family vacation, celebrating 20 years of marriage! And I also plan to post soon about the softball team Catherine has joined – Dream Catchers. All coming soon, so stay tuned…

Thanks so much for any donation you can make. Take a look at this site:

https://bellomachre.ejoinme.org/26526

Hugs to all!

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Ellen

Filed Under: Matter of Fact Tagged With: cerebral palsy, disability, fundraising, kids

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

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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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