Holiday Happiness, Holiday Sadness

This Christmas was even harder than last. Last year I was just so excited to have Ethan and Rose home from spending 6 long months in hospitals and away from home, but this year, on Christmas morning I struggled to keep a happy face and not let Ethan see me cry.

We were blessed with a beautiful Christmas tree, donated to us by the wonderful employees at the Christmas tree lot at the Home Depot at El Con Mall. So if you need something from a home improvement store, send some business their way, they are decent people!

I want to be clear why I am so upset at the Salvation Army, I am upset because they have been able to perpetuate this image of being such a wonderful organization, but in reality they really don't care about the community they serve. If they did they wouldn't have people such as John Kelley with criminal records caring for children. If they were this organization they claim to be, they would have honored the own mission statement "Do the Most Good" and with or without a letter, done the right thing and stepped up to ease the financial burden that their irresponsibility and lack of planing to keep children safe has created for my family.

There is NOTHING, let me repeat NOTHING they can say or do that will change the fact that the people at the pool on June 2, 2009 were NOT watching my grandson. They are responsible for what happen, and yet I've not been apologized too, nor have they taken responsibility. They cower in silence, on this subject, but are very quick to go in front of the media, claiming they are a wonderful organization that cares about the community.

I am a member of this community, Ethan is a member of this community... where's your caring actions for us? Where's your Christ like love and service to God?

Snow in Tucson??

Well not really snow, but the magical effect was there all the same.

Yesterday, I was thrilled to be able to spend the day with Ethan, and as we tried to enjoy the Christmas season, I found myself getting choked up a lot. One stop we made was at the Children's Clinic for a special visit with Santa Claus. I was thrilled with how patient Santa was with all the special needs children. After spending some time sharing secrets with Santa, and posing for a picture, Santa told Ethan he could pick a gift from the buckets next to the tree. At those words I saw the smile on Ethan's face and I felt my eyes starting to water. Fighting to keep my composure, I helped Rose, pick out something that Ethan would enjoy, and we turned to leave.


A volunteer approached us and told us not to leave, that we still needed to take Ethan into Santa's workshop. Well this was an unexpected surprise, so I followed Rose and Ethan into the workshop and felt just like a kid again as I looked at all the toys laid out on tables.

There was so many wonderful toys, but nothing really for Ethan. Because of Ethan's limitations, it was hard to choose something he could enjoy. As i watched Rose looking at the selection and trying to find something Ethan could enjoy, I really started to cry, as I went back to Christmas '08 memories of Ethan with the family enjoying all the holidays had to offer, including our family tradition of a wagon ride through Winter Haven.

One of the volunteers brought out a Sponge Bob Lego set and Ethan once again broke into a great big smile. By this time, my face was soaked with tears, then another volunteer came up and gave him a soft little Teddy Bear! With help Ethan was able to cuddle his new fiend and with his toys on his lap, we wished all the volunteers a Merry Christmas and headed out to our next stop.

After a few more errands, we headed up to La Encantada to see the snowfall. I didn't know where the even would take place so I saw a woman, with children and approached them to ask as Rose got Ethan out of the van. This lady was very nice and explained where we needed to go. The children's grandmother was there and said just follow us, and I said I need the elevator, and she said no just go down the stairs you can follow us, I replied, I can but my grandson can't, at which point she looked up from buttoning her granddaughter's coat and her gazed moved towards Ethan. I saw the look on her face, that I've seen so many times before, a look of pity mixed with curiosity, and embarrassment. I told her it was okay, as they directed me to the elevators.

We made our way to the courtyard and were trying to decide where the best place to stand was, when I heard a voice behind me say: "I see you made it" I looked and it was the family we'd met in the parking lot. I thanked them again for their help and could still see the curiosity in their faces, so I told them Ethan's story. That prior to June of 2009, he had been a healthy happy boy, who was not only very bright, but funny and kind. The kind of kid, every parent would want as their child.

This family helped us figure out which way to face Ethan's wheelchair so he could get the full affect of the snowfall and enjoy the moment. As the snow started to fall and the Christmas carols were being played, I got lost for a moment in the wonderful magical feeling of it all. And in the blink of an eye, many Christmases flashed through my mind, from my own childhood, to Rose's, to the too few precious one's we use to share with Ethan, when he could sing along and interact with the family. I really started to cry as I watched the children Ethan's age, dance around and chatter with their families.

I tried to compose myself as I looked back at Ethan, and when I did I saw the joy on his face as the snow began to fall. This helped me for a moment forget the pain, I carry with me daily. We moved his chair so he could be under the falling snow and all of us laughed as we watched this 'snow' fall on each other's hair and faces. It truly was a magical moment, with globs of 'snow' on my nose, chin and eyelashes, Ethan laughed and although this moment was fleeting, it was the start of new Christmas memories, in our new life.

You see last year at this time, we were getting ready for Ethan to come home from the hospital, and so we were so focused on getting housing secured and equipment that Ethan needed, there wasn't much time to think of anything else. All we knew was that Ethan would be home in time for Christmas.

I wish there was a way everyone could see Ethan's face in person. He is such a wonderful boy, and when you look in his face you see his spirit is there, the same loving boy is there. It's the one thing they couldn't steal away from us. It's this face and the love that radiates from it, that keeps me fighting. Fighting to get the resources that may make a difference in the quality of his life.

I truly believe there are treatments available that could help him improve, I just don't have the financial resources to provide those and that breaks my heart.

18 months later

I realized the other day that it has been 18 months, since my life and more importantly Ethan's life was forever changed. As the 2nd Christmas without the sound of Ethan's voice creeps upon us. I can't help but continue to be frustrated. I know many people probably are thinking 'get over it already' and maybe I should be moving past what happened faster than I am. One thing I have learned is that grief takes on different forms for different people and we all heal at our own pace.

I know one of the things that has continued to frustrate and yes anger me, is the people responsible for this have yet to:

1. Acknowledge their carelessness
2. Apologize to me and my family (mostly Ethan) for destroying his life
2. Keep their promises and stand by their word

Back in June 2009 Lt. Colonel Doug Danielson promised on behalf of the Salvation Army that the Salvation Army would pay for anything insurance didn't cover. At the time we thought "Great! Wonderful! Ethan will get the care he needs!"

But soon we found out those were just empty words. Words of a Christian and more importantly a christian organization should be kept and should be honored.

Not so with Lt Colonel Danielson and the Salvation Army. Ethan has missed out on treatments and other therapies that might, just might be the difference in his recovery and progress.

We've been told that he will NEVER be the same, but I still hold out hope. Hope that as Rob once told me, as long as there is life there is hope. So I hope that Ethan will recovery and be the same little boy he was before we dared to trust an organization and their summer camp program.

At the very least I hope that I will once again here his voice say "Grandma" it's been way too long since I've heard my precious grandson talk to me.

I know I haven't posted in a very long time... so much has gone on and so many things to deal with, seems like before long another day then week, then month goes by.

What I haven't stopped doing is sharing Ethan's story and trying to keep other children safe.

What I haven't stopped doing is holding the people responsible for this accountable. Do what you said you were going to do Lt. Colonel Danielson. If you won't I'll continue to do what I can to hold you accountable until you do.

Last Year

Last year I had just kissed Ethan goodnight, after a night of hanging with him. We played Star Wars Lego’s on the WII and hung out and laughed and talked. If only I know that it would be the last time we would be able to hang out like that. That it would be the last time I would hear his voice, perhaps forever. I don't want to be pessimistic; I want to be able to believe that he will be back 100%. But I would be lying if I didn't say my faith hasn't been shaken.

I am so sick of people feeling pity for me or feeling awkward around me when I want to talk about this. I am so sick of feeling like I can't feel anger about this situation. I am so sick of how this has affected so much of my life.

I'm upset that the Salvation Army and John Kelley in particular will NOT step up and admit what they did. I really won't ever understand how these people go about their lives knowing that laziness and carelessness caused Ethan to have endured all he’s been through the past year.

I’m so sick of trying to figure out how I can help my daughter pay her bills, let alone get Ethan into Hyperbaric, while people keep asking “Won’t the Salvation Army pay?”

I will be the first to admit that I have to let go and trust God, but honestly I can’t. I’ve lost faith. I don’t understand how God will answer my prayers from a year ago and spare my daughter’s life, but not bring Ethan up out of that bed.

I know how much he has improved and I know he continues to fight and improve each day, but still it doesn’t make any difference, I can’t help what’s in my heart and God already knows.

I’m damn sick and tired of people, the worst offenders in my opinion being certain family members, they know who they are. The ones, who have said over and over, I’ll be there, tell me what you need, and when it comes right down to it haven’t even made an effort to go see Ethan. I’m done with you, don’t ask how Ethan is, and don’t ask what you can do. Because if you really wanted to know, you would have made time to go see him, you would have already done what you know you should do. Help Rose, and not just financially either. Call her, let her know you care, stop by and sit with Ethan, so she can go out and have a ‘normal’ day. Or just go about your life and don’t worry about us, but don’t pretend. You’re actions speak volumes of what’s in your heart.

I done, I’m over it. I don’t need your damn pity anymore. I don’t need you ‘helping’ us. Maybe I shouldn’t be feeling this way, but right or wrong, this is how I feel.

I do feel extremely proud of my daughter Rose. She has shown such remarkable strength and love fighting for care for Ethan and being by his side 100% of the time. She has had to endure so much and yet she does it, when it was only a year before that she was so sick. His own father couldn’t be there for him before the incident, much less after.

What an amazing person she is. And Ethan, oh my goodness, he is just so absolutely strong and amazing. His smile still both warms and breaks my heart. I love that little boy like nothing on this earth. I see a strong spirit that WILL not be squashed, that will not be kept down; if ever there was a fighter, it is Ethan. He is so absolutely, positively the most wonderful little boy ever. I know he won’t give up and that helps me to not want to give up.

Tonight I was asked what I wanted as resolution to all this, and to be quite honest, aside from being able to go back and change the outcome. I’m not 100% sure. I know I would want to be able to prevent this type of tragedy from happening to anyone else. To maybe even make the carelessness of how they cared for those children that day, a criminal act. To maybe just as I’ve said before, for people to admit how stupid it all was. That all it took was someone paying attention.

I do know that I will one day get past this anger I've carried around for a year, but that day is not today. That day is not on the near horizon.

Not again!

It broke my heart to wake up to the news that yesterday yet another child, a 3 yr old nearly drowned, here in Tucson. Instead of being safer, it has started sooner this year. I don't know what it will take to get people to watch children around water. Our children want to be safe, they want to follow the rules.

A year ago Ethan wanted to be safe, he was so excited to be able to go swimming with the other day camp kids. But sadly no one was watching. Why was no one watching? I just don't understand it. What will it take until we realize that children aren't water proof, that they need and trust the adults who care for them, to watch them.

Well I won't give up, I won't stop working to promote water safety, and I won't stop trying to get Ethan the treatments he needs. I wait for the day that Ethan will be able to walk and talk again and maybe he can share his story and people will finally listen.

Tucson Safe Kids

Been a busy few weeks, which is why I haven't posted in a while. I've had the pleasure some spending time with my favorite little guy. The best time was on May 1, Rose, Ethan and I went to the Northwest Fire Department's 13th Annual Burn Buster Blast! at the Foothills Mall. Ethan enjoyed looking at all the fire trucks, emergency vehicles and helicopters. He also was able (with a little help from Mom) to dunk Dan Marries, at the Casas Adobes Optimist Club dunk tank. As if all that fun wasn't enough, Ethan got to meet both Wilbur and Wilma Wildcat along with several members of the Sabar Shriner Clowns.

I've also been busy trying to do what I can to help keep Tucson kids safe. I attended my first meeting of Tucson Safe Kids and it was informative and they have lots of good ideas, but as usual one of the biggest problems is funding. I hope to be able to continue to volunteer with Tucson Safe Kids and do what I can to speak out about water safety.

If you're looking for ways to get involved and help keep Tucson Kids safe, check out Tucson Safe Kids @ http://www.safekids.org/in-your-area/coalitions/tucson.html

It never gets easier

Emotionally none of this gets any easier. I wish I could say it does, but each day something happens that just breaks my heart all over again. I don't know about other people and how they handle tragedies. How do these people rise above it all? For me, some days it seems to get harder instead of easier.

Last Tuesday, I went down to the Edith Ball Pool to help with the Tucson Safe Kids Water Safety program. This event was a culmination for over 800 first graders, who had been learning about safety and especially water safety in their classrooms. It was wonderful to see the kids so intent on learning all about water safety, but what broke my heart was when I looked up and saw several of the adult chaperones, disconnected and bored.

I wanted to scream, this is why Ethan is in the condition he is in, because someone got distracted, bored or was just plain disinterested in watching him.

Our children want to be safe, they want to learn, they want us to guide them and teach them the right way. We are supposed to set the example and set them on the right path.

They rely on the adults in their lives to watch over them, to protect them, and if you are not going to do so, then you have no business watching children or being responsible for them.

So here I am again spending the weekend watching Ethan, so Rose can work a little part-time job and get a little money in her pocket. Last night she comes home, and I can see she is tired and upset.

When I ask her what's wrong, she tells me that Friday she was listening to a local radio show and they had the guy, John Kelly from the Salvation Army on air, this is the guy who was supposed to be watching Ethan last year, and there he was on air promoting their charity fund raiser.

Normally, I'm all for an organization to raise funds to help people, but this organization and their carelessness is the reason Ethan nearly drowned, and yet they have not lifted a single finger to help us financially, or any other way for that matter.

When Ethan was at UMC members of the Salvation Army, came to the hospital and told my daughter that whatever she needed, whatever Ethan needed, they would take care of.

Well here it is almost 11 months later and they have not kept their word to help, instead they are on the radio promoting their organization and asking for money from the public.

Yes, I'm mad as hell over this. It tore me up to see my daughter so upset. I know how upset I would have been, had I heard this, and so I can only imagine how painful it must have been for her. It must have been like a slap in the face.


I know what you're thinking, that I should forgive and that the money they are raising is going to help other families, and maybe it is. But it doesn't change the situation; I wake up every day in the same nightmare.

All I know is that my grandson is not the same and that his injuries were 100% preventable and I know that he needs, desperately needs the benefits from hyperbaric oxygen treatments, and he hasn't been able to get those treatments since October of 2009.

All I know is that while I'm struggling to try to help my daughter and to raise money for Ethan's hyperbaric treatments. I've yet to hear an apology from the people responsible for his condition. I've yet to have anyone of them ask how they can help.

All I know is that the youth members of the Salvation Army have wanted to help with fund-raising and have been shut down and told that they could not help us.

Since I started the web page and the wristbands, we have raised approximately $452. We are thankful for everyone who has donated, but it's not nearly enough to get Ethan back into the hyperbaric chamber.

There was such a dramatic improvement after just the one round of hyperbaric, that I can't wait to get him back into treatments.

I know I'm supposed to forgive, God knows I know that I should be able to forgive.
But what can I say, I'm only human, and this is my only grandchild.

Learning the Ropes

After spending most of day walking in my daughter's shoes, I have renewed respect for all my daughter goes through. I mean, I know she's here for Ethan, day in and day out, but it's one thing to know it and another to experience it first hand.

Today I got to walk in her shoes because I wanted to 'learn the ropes' as it were. That I could be more prepared and able to help her care for Ethan. Once I earn my stripes, I might be able to convince her to take some much needed respite and care for herself.


Today's adventures of Grandma and Ethan, including Grandma driving Ratatouille to pick Ethan up from school, learning to work the lift and tie downs. Then off to speech therapy, where Ethan was in a pretty silly mood, but still worked hard. It was a long and tiring day for Ethan, but he was such a good sport about everything.

After speech therapy, it was time to go home and get bathed, and ready to relax for the night.
So here we are on a Friday night chillin' together watching "The Muppets Take Manhattan" hearing his spontaneous laughter at the antics of Kermit and Miss Piggy really warm my heart.

It may have been a long day, and I may be tired, but I can't think of any place else I'd rather be than with Ethan, enjoying Friday movie night.

Helping with water safety

Today for the first time in a long time, I felt pretty good about water safety. I met with some folks from the Drexel Heights Fire Department and volunteered by getting bags together for their event next Tuesday.

The bags were these cute bright yellow tote bags. Each bag included a Safe Kids Towel, an adorable duck hat and some safety brochures.

The even next week will be for over 800 Tucson area 1St graders. They will go through several stations learning all about water safety.

I will be there for a few hours mid-morning and I've been assigned to water safety pledges. If even one child will be saved and one family prevented from having to go through the hell, it will be worth it.

Usually, I love the warm weather but this year I feel sort of haunted. I know it's not healthy to live my life in fear, and I don't know if fear is even the right word for it.
I just know I'm feeling pretty emotional right now and don't want to have to turn on the news and hear about another family having to deal with the stress of a drowning or near-drowning.

Please continue to help spread the word and assign a water watcher whenever youngster are around any type of water.

Safety Steps and Wristbands

I'm so excited the wristbands we ordered for Ethan's Buddies are en route and should be here on Friday.

My desire for the wristbands is that they not only help fund raise to alleviate the tremendous financial burden this has placed on my daughter as she cares for Ethan. But that it also promotes water safety awareness.

It's important that everyone be alert and aware every time your loved ones are around water.
Never assume someone else is watching the children. Diligently watch every child near water.

Contrary to what people believe, drowning is a quick and silent killer.

There are 3 ACTION STEPS you can take to prevent drownings.

1. Protection






2. Supervision






3. Preparation

Protect your children by:

• putting alarms on doors and windows - especially the doggy door




• install a non-climbable five foot fence that separates the pool and spa from the rest of the house/yard




• use self-closing, self-latching gates




• install pool safety covers




• maintain all safety devices




• routinely check that you have secured and locked all doors and windows leading to the pool/spa




• drain standing water from pool/spa covers




• never leave toys in or around the pool

Supervise your children:

• assign an adult "WATER WATCHER" who knows how to swim to supervise the pool/spa area.




• assign a second adult as the "CHILD WATCHER" this person must maintain visual contact with all children in the pool/spa area




• don't distract your "Water Watcher" and "CHILD WATCHER"




• if there is a pool party or lots of children near or in the water, use multiple "CHILD WATCHERS"




• never leave a child alone near any water




• don't rely on swimming lessons




• don't allow children to play in the pool/spa area




• if you lose sight of a child check the water first
  

Be Prepared to help your children:

• learn how to swim




• get CPR and first aide Certified




• mount rescue equipment near the pool (lifesaving ring, shepherd's hook, CPR how to sign)




• teach everyone how to use the safety equipment and how to call 911




• know the skill level of your child's caregivers if you are letting them attend a group swim activity and you will not be present.

What to do if you find a child in a pool:

1. yell for help and clear the pool, everyone should get out of the pool and onto the deck




2. if you have someone with you, have them call 911 while you attend to the child




3. if you are alone, and the child is not breathing start CPR, after one minute call 911 then resume CPR and continue until help arrives.

Getting used to sharing

For the past 10 months, I feel like I've been dealing with this situation alone. Yeah sometimes I let go and let it out. Usually with my closest friends. But the hardest thing is talking to other family members. It seems like we are all trying to be strong for each other, and I don't think that is the best thing we could be doing. I think there might be some healing if we could somehow grieve together.

If I feel this way, I can only imagine how my daughter must be feeling. As strange as it is, I find it hard to open up and share with her, and I feel she is trying to handle everything on her own.

I know you're probably thinking I shouldn't be grieving at all, after all Ethan is alive, so shouldn't I be grateful for that? But I think grief is the right word, and the right emotion. Ethan is a alive and I am very grateful for that. I also believe he will be restored, but that doesn't diminish the grief.


It still hurts so much not to have Ethan the way he was. I miss who Ethan was, I miss the way we would hang out together and the little things that were just ours (secrets, giggles and all fun stuff you don't tell your parents)

So while yesterday was Easter, and I am once again reminded that Jesus died for our sins and for our healing. It was still a difficult holiday to get through. I mean I am after all human, and all I could think of was how I spent it the year before with Ethan.

So many of my thoughts these days are divided into two categories, before and after the incident. I call it an incident because I struggle with what to call it. I don't want to say accident, and yet part of me thinks that it was an accident. I don't think anybody got up that day and said "Today I will be careless and cause harm to a little boy" but at the same time what happened was so totally preventable, it doesn't seem right to call it an accident.

Whatever you want to call it, the fact remains. My life has changed in ways no one who hasn't gone through this type of thing can understand. Ethan's life of course has changed the most and the frustrating thing is I don't know who to go to for help or where to turn.

There are so many things my daughter is having to deal with and so many financial burdens, I'm trying to help as much as I can, but I am growing increasing frustrated at my inability to drive change and find resources and solutions.

Oh Lord I need your strength, guidance and wisdom now more than ever.

Why We're Here

This blog has been created to share our family's story, it's one of tragedy and of hope. Of a mother's love, for her son, and for that son's tremendous spirit that shall not be dampened.

It's hard for us to share, so be patient, while we collect our thoughts and share our story with you.

Ethan's Story

Ethan, is my grandson, and the most beautiful child you'd ever want to meet. He's fighting back from an anoxic brain injury as a result of a near drowning, 10 months ago. These last 10 months have been some of the most difficult times of my life.


I don't even know how to begin sharing, what my family has gone through, so I suppose I should tell the story from my point of view.

Tuesday June 2, 2009, barely the start of summer but in Tucson, the temps were already in the 100's. Sitting in my air conditioned office, I was unaware of the soaring temperatures outside.

Yet, I vividly remember that summer afternoon, I was at my desk with a few minutes to spare before a meeting. I decided to check out some activities that Ethan, my grandson, might enjoy on our upcoming trip to Florida.

It would be the first trip to Florida for all of us, (Ethan, my daughter Rose, and me) and I was terribly excited, not only because we were going to a destination wedding of some dear friends, but we were going to take a few extra days and really enjoy a family vacation. One that was long over due.

I was busy looking as some water activities and a pirate ship tour. My excitement was mounting and I couldn't wait to share some ideas for our trip with Rose and Ethan. Ethan was so heavy on my mind as I was looking at all the fun activities I could almost hear him splashing about in the water.

Lost in fantasy about our upcoming vacation I was pulled back to reality when my outlook reminder for my meeting popped up. I headed down the hall to the boardroom, and then realized I had left my cell phone on my desk, so I returned to retrieve it. Not sure why I did that, as it was my usual habit not to worry about it.

By 3:30 I was concentrating on our sub-committee meeting and the status of our volunteer recruitment efforts, when I felt my phone vibrate in my pocket. Usually, I will ignore my phone, when in a meeting but something made me look to see who was calling. When I saw it was a friend of my daughter’s I left the meeting to take the call.

Phillip never calls me, so I knew something was up. My thoughts raced to my daughter, who in 2008 had become so sick with Lemierre's syndrome, we almost lost her.

The next few seconds would change my life forever; I don’t even really recall what Phillip said to me, all I remember hearing was something about Ethan, drowning and UMC.

I ran down the hall to my desk, grabbed my purse and keys, barely stopping long enough to tell my boss, I had a family emergency.

I don’t remember the drive to the hospital; I just remember trying to reach my daughter or some member of my family on the phone, wanting to know what happened.

When I arrived at the hospital’s emergency room, they immediately took me back to this private family waiting room area, and no one would tell me what was going on. Where was my daughter? Where was Ethan?

I don’t know how long it took before they took me to where my daughter was waiting outside radiology.

I rushed to my daughter's side, with questions in my eyes. She couldn't respond, she was inconsolable, because there were no answers. Ethan was in critical condition. At that point no one really knew what happened and no one had any answers but what little information there was started making its way past the shock and horror.

I was told Ethan had been swimming with a group of kids at a summer day camp program, and somehow went under.

One of the other children, sounded the alarm, and a call was placed to 911. Apparently there was a fire station team in the area and they were able to respond within minutes, but were they fast enough?

From radiology, we were allowed to follow Ethan and his medical team up to the pediatric ICU. There we so many tubes and machines, it broke my heart.

As word spread members of our family rushed to the hospital in support. I couldn’t believe this was happening, and for the next several days our family practically moved into UMC.

I kept remembering that I was just with Ethan the night before, as Mondays were our traditional special time, while Rose went to bible study. Less than 24 hours ago we were playing video games, and laughing and teasing each other.

And now, there I was sitting at a hospital with my world turned upside down, wondering if he was even going to survive. At that point, survival was the only thing on my mind. I never stopped to think about any long term effects of his injuries. I just wanted to know he wouldn’t be going home to heaven.

Days turned into weeks and eventually Ethan was stable enough to be moved from ICU to the regular pediatric ward. At this point it was clear, that although Ethan was alive, he wasn’t the same child he was weeks earlier.

Little did I know then, what a long journey lay ahead.