What Five Years Later Means Today

It's quiet here.

Coffee is half full. (I'm an optimist.)

Lola is asking for more Lucky Charms. (I know, I know. But she's content. I'll make her all natural smoothies for the rest of the week to make up for it, okay?)

Christian is watching TV. (Yup. Just checked. He hasn't turned away so he's still watching and engaged I think.)

He yells.

Lola - "Mom, I hear Christian singing. I think he's singing along with the cartoons."

I hear him, too.

This is what five years after a drowning looks like. This is what five years after the worst and best day of my life looks like. This is what five years after thinking I may never be happy again looks like.

This is us. We've reached normal.

To be honest, we've been at a normal for a while. It's a fine place to be. We obsess over stupid, unimportant  irritants of everyday life. I fuss about stains on my carpet. We discuss whether the monsoons will hit not because it reminds us of that day but because we are genuinely concerned for our water hungry trees in the back yard. And because monsoons are pretty awesome. We binge watch our favorite Netflix shows and whine about work. I mean, I whine about work.

These are all of the things normal affords.

It was five years ago today that my son drowned. He was eleven months old. Not even walking. He was too nervous about taking the first step. So he'd stand and bounce until he sat down and crawled to his desired destination.

His desired destination that day, five years ago, was the pool. I closed my eyes for what seemed like just a minute. I let my guard down for what seemed like just a minute. And the next sound I heard was my older son saying Christian had gotten out...pulled out of the pool...laying lifeless...totally white. There was dead silence. It was like all the people in the whole wide world had disappeared and I had no idea what to do.

He had no pulse and no heartbeat. The hospital called us in to "be with him." Nurses ran out of the room crying. It was a nightmare. A fucking nightmare.

I went to my little boy that day and I put my hand on his little chubby leg. There was so much going on. People rushing. The whining of a flat pulse ox. They were about to call his death. I said Christian's name. And then there was a pulse. Then there was life.

He drowned. He didn't nearly drown, although that's what we call it so people will understand. But what really happened is that he drowned. He died. And then God sent him back. Or he came back on his own will to live. Or both. Either way, it was miraculous.

I'm honest here about what happened. Five years later in the corners of my heart and my brain there is still grief and guilt and I'm not sure that will ever go away. I always had fierce opinions about what it meant to be a parent. I was a breastfeeding advocating - attachment parenting supporting - daycare loathing opinion machine. I always believed I was born to be a mother ahead of anything else. I judged other parents harshly and swiftly. Nothing would ever happen to my children because I watched my children. I watched them and cared for them and loved them too much. Surely they'd be safe. Especially if I judged other parents. That would for sure make my kids safer.

Until it didn't. And something near fatal happened. And then I was the person who was judged. Rightfully so, my old self would say.

If I've learned anything in the last five years, it has been compassion. We hear of children drowning all of the time. And we scream, "Watch your kids!" because it makes us feel safer. Christian wasn't playing by a pool. He didn't accidentally slip under while I wasn't paying attention. He got out of a house that I believed a crawling baby couldn't jailbreak. I was so wrong.

As another near drown mom said perfectly, ask yourself - have your kids ever been alone in the house long enough to draw on the walls? Make a huge mess while you were tending to another child? Hide from you thinking it was a game you didn't know you were playing? What is your child doing while you're posting in comment sections about the irresponsibility of other parents? That's about how long it takes for catastrophe to happen.

We didn't get out of it unscathed. Christian is a different child, yet the same boy. Baby pictures of him will always be bittersweet. I will always look at them with sadness, as if that baby died. Because he kind of did. We had dreams for that baby. We walked on the beach while he was still in my belly and talked about how we would bring him there to play in the sand and soon he'd be walking with us with his little feet.

We just got back from taking the kids to that very beach over the weekend. I sat with Christian at the shoreline. He can't walk in the sand. But I helped him feel it. I thought about the plans we made for him on the beach and felt a little pain in my heart. But the pain was quickly squelched by gratitude. I would rather be sitting at the shoreline with him on my lap describing the waves and dipping his toes in the water than staring out at that giant ocean morning and missing him. That I know with 100% certainty.

My boy is here and alive. He is the cutest blond-headed almost six year old with big curls that grow out if I let his hair go long enough. Everyone who spends time with him loves him. He teaches the world, the doctors, the skeptics not to count him out. Thank God he's healthy. He's content. He makes happy sounds and annoyed sounds. After two years of nonstop crying in the beginning he rarely cries now. Only if he's truly upset or hurt does he cry now. He loves to be snuggled.

I love Christian to a depth that scares me. Maybe it's because I have the acute knowledge that he could be gone at any second. He is my perfect baby. I see him as perfect the way he is. That doesn't stop me from wondering what he would be like. I'm not really into babies anymore but I have a weakness for baby boys with big heads like him. And I observe six year old boys as if it's something I've never seen before, like they're in a zoo, trying to process and understand what Christian would be doing.

Over the past five years I've changed. I'm not as patient as I'd like to be. I think everyone must think I'm so patient and understanding. I'm probably less patient and understanding than you realize. I'm not afraid of questions about Christian. I'm happy to teach. But I'm not as helpful as I'd like to be with new parents who are going through the same thing we went through. In all honesty, we've moved so far beyond that and I just don't really want to go back.

We are thriving in beautiful normalcy. We didn't get here alone. We have so much support from family and friends that helped carry us here and they show up every day. Whether it's through being physically present, sending an email, a message on Facebook, or just praying for us. They all help us stand and move forward.

Christian's journey isn't over. Our story still continues. It's one of faith, redemption, compassion, forgiveness, grief, pain, beauty, and hope.

To my forever baby.



I feel so strongly about ISR lessons for babies as young as six months old. Barriers of protection and supervision are key but ISR saves lives. When all barriers fail, ISR gives babies the instinctual skill to save themselves. If you are so inclined, please consider donating to the ISR scholarship fund so that cost will not be a factor in children obtaining this skill. To donate click on the link below. Donate in Christian's name.

https://isrcrossfit.com/how-you-can-help/donate-to-isrcrossfit.html

What I learned on the last day of school.

It was Christian's last day of school today! He made it through his first, whole year of preschool! We really couldn't have asked for a better experience and I can't believe it went so fast.

We baked two batches of chocolate chunk cookies for Christian's team - his teacher, his aides, his PT, OT, Speech Therapist, as well as his team from where he spent the first half of the year.

That, there is a sun tea jug full of chocolate chunk cookies. You may notice Christian is not embracing this cookie jug and I'm pretty sure it's because he wants no part of giving all of them away. Sorry, Christian. They're all for the teachers!

Christian with his teacher, Miss Christy. We'll miss her, but she'll be his teacher next year, too!

I'm so proud of my little dude! He was too tired to celebrate.

This school year was full of a lot of change. I'm sure Christian learned a lot. He learned to hang without Mommy always in his face (ignore the picture above). He learned to be around other kids without getting upset or over stimulated. He made me pictures and projects and even planted a bean plant that sits on our window sill. And it's still growing!

I've learned a lot, too. I learned to trust that Christian would be just fine without me. There was not a single day that I kissed him goodbye that I felt he wasn't safe, cared for, and wanted by his classroom.

I learned that Christian is teaching others at his school about acceptance every day. And I learned that kids his age were readily accepting of him, even getting down right excited when Christian came to school. I learned that Christian had friends! He was invited to his first birthday party of a classmate, he went on his first field trip, and he got to "stand" outside with his friends. I learned there was always room for Christian.

We had a pretty positive experience this year. But in the last few days of school there was what seemed to be a foreshadowing of what may come in our future. After a whole school year of abundant acceptance, I noticed while pushing Christian through the school courtyard during lunch hour, that some of the smaller children, maybe around 1st grade, were not only staring (which we're used to and not really bothered by at this point), but were laughing and snickering at Christian. This not only happened once, but a few days in a row.

I understand the staring. They don't understand what they see. But I learned that the laughing, even from a small child that doesn't know any better, hit me right straight in the heart. I think this experience deserves a whole post, which is coming, but the short version is that I learned that standing up for Christian is going to take a different turn in our future. It won't always mean asserting ourselves and advocating in the medical world or with IEP's. It will mean something totally and completely different. But that's for another post.

For now, I'd like to highlight the positive of this year. One of which being one of Christian's little friends from school named Eva. Eva is a beautiful little girl with big, gorgeous eyes who is living with Holoprosencephaly. She and Christian get to ride in their chairs to recess. And today, the last day of school, I talked to her mom, Gabby for a little longer than we usually do. In those short, last five minutes, we were on the same page like nobody's business. We had different stories in how we were brought to the same school, the same classroom, but we shared the same grief, the longing, and the same bittersweet.

So the biggest lesson for me this year, and fittingly learned on the last day of school, is even when we feel we are alone and that not a single soul on the planet knows exactly what we're going through, we're proven wrong. And that's a really good and appreciated lesson to learn.

What else did I learn? She has amazing insight. We're learning the most from these little ones in front of us that ride their chairs to recess.

"...But I swear that little girl is a teacher! She taught me how to spell, H-O-L-O-P-R-O-S-E-N-C-E-P-H-A-L-Y, M-O-T-H-E-R and more importantly F-O-R-E-V-E-R!" - Gabby's Blog.



The walking wounded.

In first aid and triage, the walking wounded are injured persons who are of a relatively low priority. These patients are conscious and breathing and usually have only relatively minor injuries; thus they are capable of walking. Depending on the resources available, and the abilities of the injured persons, these people may sometimes be used to assist treatment of more seriously injured patients, or assist with other tasks. - Wikipedia

I was reading a review about a new movie coming out about a family grieving over loosing their husband and father to 9/11. The review referred to the boy in the story as the Walking Wounded.


Walking wounded.

Such a perfectly simple description of those who have endured loss, pain, and grief.

So I googled it.

...conscious and breathing...capable of walking...

I write a lot about intentionally seeking out joy and happiness and it really being a choice in life. In our lives we've made a conscious effort to do this for our sanity and the happiness and survival of our family.

When the accident first happened with Christian, I mistakenly thought things would gradually just get better and better. I had sad days, but I was certain that eventually they'd go away.

I'd have rough days, very emotional weeks, and then I'd be over it. Happy again. Rough days were behind me and I was forward, full steam ahead.

Then out of nowhere, I was sad again. It would be set off by a picture I had never seen of Christian as a baby, happy and wide eyed. It could be for no reason at all and I was right back where I was in the beginning - broken hearted and just...well, broken.

It's called grief. And if I take myself and my emotions out of the equation, it is quite fascinating how this little bastard works.

It weaves itself in and out of our lives, piercing everything it touches. It makes us feel awful, it makes us feel validated, it makes us feel cleansed. It wraps itself around our old family photos, and sits heavy on our hearts when it is quiet and we're alone.

This kind of grieving - the grieving of a special needs parent - it comes in what I can only describe as levels.

When we left the hospital, as I said, I thought things would just continue to improve and improve and improve. Maybe Christian would be slightly delayed. But he'd catch up, right?

Levels.

I've learned from other parents. I've seen their grief. And it, too, is in levels. Half way between life and death.

...He's not smiling...She doesn't even move...He has a trache...He has pneumonia and he's in the hospital again...surgery? again?...He won't stop crying...She won't sleep...She throws fits...He has neurostorms...She has seizures...medications aren't working...We have to meet with the palliative care team...we have to keep him comfortable until the end...He doesn't like to be touched...He can't see...She doesn't talk, just screams...Does he even know who I am?...God, just let him make it through the night...Why are other children doing better than my child?...We need miracles...

Levels of grief.

Level 1 - We think there may be seizures. Level 2 - Medications aren't working. Level 3 - Seizures are intractable.

Level 1 - He probably won't walk. Level 2 - Not enough weight baring. Level 3 - Bone quality is deteriorating. Level 4 - Hairline fractures. Level 5 - Dislocated hips. Level 6 - Painful surgery.

Each level is a new found pile of grief to step in.

And they come in little droplets or they come in waves. Grief hides in things like cartoon characters you're child should be obsessed with. It's waiting in thoughts of grandchildren that will never be. It's all over your spouse's face when he talks about playing catch someday with his son, or his dreams of it, anyway. It's there. And really never, ever goes away.

When I hear the stories of mothers and fathers of children who've passed, I feel their grief. It goes beyond the polite, "I can't even imagine..." Because I can, and I do, and I can feel it. It's a heightened perception of pain that I now possess and part of me is thankful for that. The other part of me wants to give it back.

Luckily, grief doesn't stick around for too long these days. But all too often I meet or hear about families who are just at Level 1. And I'm sad for them and their long journey ahead.

The movie review called the little boy the Walking Wounded. But the most important part was when he said, "...But he is still walking."

We're still walking.

Thankful for the new normal.

I'm thankful for a lot of things and I think I make that pretty evident here.

I decided to go back and read last year's Thanksgiving post just for kicks and I started to think about this last year and what I am most thankful for.

I think most of all I am thankful that we have settled into our new normal. By now that seems almost cliche to say something like that in our world because I feel like we hear it and say it all the time. In our community, and when I say "our community" I mean pretty much any family who has a member who has special needs through birth or after birth, it seems that everyone is on the great search for the "new normal."

When am I going to feel like I can laugh again?

When will I be carefree?

When will I be comfortable with all this?

When will we accept all this? Can we even accept all this life will bring us?

When will we arrive? Can we go back? When will it be okay again? When will I feel happy again? When will I stop crying?

I feel like I'm falling. When will we learn how to fly?

The first year after Christian's accident, I didn't even have time to really process any of this. We just kept going, going, going and it really distracted us from any kind of grief that was lurking in the shadows.

It wasn't until our second year hit and we slowed everything down, concentrating on only a few things at a time. That's when the rain came. It poured. And it was gut wrenching.

Lately I've been thinking about that first and second year and how different they both were. And I think about right here and right now and I have to say how damn thankful I am that we've found our new normal. Not only have we found our new normal, we've carved out a space, burrowed out a warm place, covered it with fuzzy blankets, and we now reside here in our new normal, safe and sound.

This new normal is our safe place. Often we venture out and forget that our normal looks different. And we see the grief on the faces of others wondering what and why and how this could happen to such a cherub of a boy. Those faces hit us in the heart, but they don't stay there for long. We know we have a safe place...covered with fuzzy blankets. It's the new normal and it's all the rage. It's all ours.

And we do laugh, we don't cry nearly as much, we are happy, and it's finally okay.

Yes, it comes with a little acceptance, and, in a way, there is a sadness that comes with acceptance. But there is also a great release and forthcoming freedom to move on and find that spot called normal.

Some people can't accept what has been dealt. But I urge them to. There is happiness and there is light beyond the darkness. The misconception is that acceptance is giving up. It's really not. Acceptance is moving forward and learning how to fly.

So I am ever so thankful that we've found that cozy place that is our normal. I'm thankful we've found our groove. I'm thankful that not only have we found happiness and laughter, but we seek it out and claim it as ours with a healthy vengeance.

Just a few other things I'm thankful for...

The Blended Diet: It makes me feel more like I'm his mom again. And I'm thankful he has gained a whole pound, thank you very much.

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This relationship.

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Christian's new wheelchair. It gives him legs. And he's super comfy. I can tell.

**************

All of my mommy friends online and in person.

You give me strength when I need it most. And you allow me to give it back.

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Christian's art projects he brings home from school. I love each and every one of them simply because he touched them. It's a little bit of an obsession. It went from this...

2 projects

...to this...

How many projects?

...and I'm adding more. It's a wall in our house that is screaming to be made into a collage of Christian's artwork. I'm not sure Manny hears that scream, but I certainly do. So to be continued...

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Oh, and you know I'm grateful for my kids' smiles because I know what it feels like not to have one. Christian still gives me his little smirks and as far as I'm concerned it's a start.

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To all - have a wonderful turkey day. Enjoy your cozy normal. Happy flying!

Celebrating Super Christian

Celebrating Super Christian

Two years.

It's seems like more than that and it seems like less than that in the same breath.

This Christian that we know and love is our Christian. And, man, do we love that kid.

The two year anniversary of his drowning wasn't sad. We were visiting family in upstate New York for the week so there was a lot going on to distract us. But, honestly, it feels like another life. When I tell the story, because it seems that lately more people are asking, I feel like I'm telling someone else's story. And the truth is that Christian has been this Christian - our Christian - for longer than prior to the accident. Two years longer, in fact. So telling our story, what happened to Christian, is becoming less and less a part of our life as it is today. Of course, the repercutions are with us forever. But we think about the actual event less and less.

In comparison, the second year has been about fine tuning. The first year we were throwing what we could to the wall to see what would stick. The second year was more about coming up for air, throwing one thing at the wall at a time. And sometimes slowly and painfully watching it fall to the ground.

The second year has been a lesson in patience. Not the kind where you say, "I just have to have patience." And the word and action of patience sits there like it's the period to the end of a sentence. End of discussion. The kind of patience I'm talking about is a hard one. It's one I don't willingly choose. It's forced upon us because there is no other choice but to have it. And instead of a period at the end of the sentence, it represents an exclamation point, a dot...dot...dot..., a curse word (or two), and a to be continued.

I, personally, learned a lot about grief. I'm not sure I knew it well the first year as I was just struggling to adjust. But when the dust settled, grief was there waiting. And the funny (and evil) thing about grief is that you think you get through the worst of it, and it finds its way back to you in different forms and with different triggers. Maybe not as strong as it once was, but always there lingering.

And we've all learned more about Christian. We've learned what works. We've learned what doesn't. We've learned that we'd rather have a child who has a few spasms and jerks but who is alert and active than a zombie child who still has jerks and spasms. We've learned there are battles we'd like to fight and battles we're too tired to attend to. And we were blessed with a crooked little smile.

This second year has been harder, in a sense. But we're more solidified as a family. The future is still bright and we always have something new on the horizon. A lot of hope on that horizon, too.

We look at these anniversaries as a celebration of Christian's life. Where gratefulness, thankfulness, hope, grace, and family meet. I often feel a need to make a resolution. My resolution is to celebrate more and whine less.

Speaking of celebrations, those August Moms are never far from us. One of our August mommy friends helped us celebrate this second anniversary of the day Christian was given to us for the second time. Talk about a full circle moment! An August mommy and and an August baby celebrating with us in New York? Did that really happen? Yes it happened.

And celebrate we did...

Make an on-line slide show at www.OneTrueMedia.com

Can you hear my nephew, James, screaming "Cake! Cake! Cake!" in the background?

It was the best cake. And I know because I ate a lot of it. And so did Christian, by the way. We blended it up with a little milk and put it through his tube. The portion of his little cake shake left over that I didn't give Christian, I gave to my nephews, who promptly slurped it down with a Twizzler straw. What?! They loved it!

We love you always, Christian.

Struggle

Life has meaning only in the struggle

Triumph or defeat is in the hands of the Gods

So let us celebrate the struggle

-Swahili Warrior song shown in the first scene of Lorenzo's Oil

When we were waiting (and waiting) in the ER last Tuesday I had a chance to get really scared. I had a chance to revisit how demise could be right around the corner for Christian. I mean for any one of us, really. But for Christian, a flu gone really bad, a nasty pneumonia, just complications from a bug...that's all it takes.

So I rocked him in my arms and prayed really hard that we'd be able to go home soon. His breathing was fast and a little labored and he was so miserable, falling in and out of sleep. Maybe it was dramatic of me but I prayed please, don't let it be now. Please. I don't care if he never progresses another inch, I just love him and I want him here with us and healthy.

One of the interns, the eager one, called him complicated. It always takes me by surprise when some one calls him complicated or fragile because, to me, he's just Christian. In fact, isn't he less complicated than a flailing, screaming, neuro typical 2 1/2 year old? He'll lay very still for you, intern, and all you have to do is take his blood and urine, run some tests, look at his chest x-ray, and then you'll know what's wrong. Does that sound complicated?

I guess it is for people who don't live with a child with special needs. Brain injury is complicated. But it's become our lives, and gladly, we accept the challenge if it means we have Christian right here with us.

When I meet new people who don't know our story and it comes time to tell them about Christian, I don't waste any time. I tell them our story right away in order to ward off questions about whether the two little ones fight or get along. It's like a challenge. For a split second I think - Are you ready for this? Can you handle what I'm about to tell you? Will you look at me with great sadness or do you have an aunt or cousin or, maybe even a child of your own, who shares the same condition so instead of sadness you'll give me a look of understanding and shared grief?

Yes, all that goes through my head in a split second. Not complicated at all.

Anyway, I'm proud of my little warrior. He's a fighter, he is. And would you believe the boy in this video was in the ER last week?

Maybe it is complicated. Maybe it is a struggle.

But it's a struggle worth celebrating.

My Two Sons

I have two sons.

Yes, I have Gabe and Christian. But that's not exactly what I'm talking about.

I have two sons named Christian. Pre-accident Christian and post-accident Christian.

I gave birth to both boys. They look the same, have the same blond hair, fair skin, and big, round eyes. But they are two very different boys.

After reading a blog post by Aviana's mom, which explained this phenomenon, I buried it for a little bit until I saw a picture of Christian last night. BAM! That phenomenon hit me right in between the eyes.

That's when it happens. I mean I can look back at every single picture I have of Christian since the day he was born and each and every one of them is memorized.

It's when I see pictures of him I've never seen before, usually those pictures that other people have taken. I'm drawn to it, searching it, trying to draw in every detail I remember from that day and when that picture was taken...trying to remember him.

It's a very hard thing to understand and explain the feeling of grief over loosing a child who is laying right next to you. I don't talk about it because, a) I don't like drumming up these type of deep, gut wrenching feeling in front of people for fear that I just might combust, and, b) I don't want to offend those who have had a child pass away. I feel like those parents might get angry for me even comparing my situation to theirs, because my son is right here with me.

But the son sitting next to me is only the same son in genetic makeup alone. I grieve that little baby that died that day and I've tried to stuff that grief way deep down where nobody can see it, including myself. See, I love the son I have now so much so that if love could "fix" him, he would have long been "cured" ten times over. And up until recently, I've felt that grieving the old Christian would be counterproductive and almost disrespectful to the new Christian.

I try not to think about that little boy. I don't put up too many pictures of him because I'm afraid I'm not fully accepting this Christian by doing so. And I also feel like I'm looking at a little boy in those pictures who has passed away.

It's a deep, breathless, heart bursting, paralyzing grief.

After seeing that picture, I let a little of that grief in. I'm not sure I can articulate it well, but that grief was so heavy I could hear my heart beat in my ears and I thought it just might beat out of my chest. It left me breathless and gasping and with the realization that I have not mourned that son properly. I have not mourned all of the things he could have and should have been. And I think it's a disservice to myself.

I didn't want to say it but I miss him. I can only admit that after reflecting on the fact that I've tried my hardest not to miss him. I've tried with all my might to emotionally check out whenever someone else mentions the old Christian. I nod and smile and listen, but only halfway. I've told myself move forward, this is Christian, focus on him, focus on Lola, focus on now.

But all alone, when nobody was looking, it finally happened...I missed him. I mourned him. And it was painful and for a second I thought I just might die. But it was good and it was freeing. Acknowledging the old Christian, my son who died that day, allowed for more truthful and whole acceptance. Not just the kind of acceptance I repeat over and over until I believe it.

Now, this Christian laying right here next to me, I love him deeply and if he learns comprehension of anything else in his life, it's that we love him because we tell him so about a hundred times a day. He has changed many lives, including mine and I'm grateful for every blessed day I'm given with him. But it's okay to miss him.

The Heart of Life is Good

Pain throws your heart to the ground

Love turns the whole thing around
No, it won't all go the way, it should

But I know the heart of life is good

-The Heart of Life is Good, John Mayer

Oh, I know it's good.

Sometimes that "heart of life" is overshadowed and buried in grief and sadness and worry. And then other times it shines through all the muck and there is beauty.

I experienced some of that heart of life stuff when I received a large envelope in the mail from one of our coolest friends, Jennifer. Wouldn't you know it, she knew I really wanted this book called Just Because, by Rebecca Elliott. It's a children's book about the author's two children - her severely disabled daughter, Clemmie, and her younger son, Toby. She writes about life with Clemmie from Toby's perspective. Here's an excerpt.

"My big sister Clemmie is my best friend. She can’t walk, talk, move around much, make macaroni, pilot a plane, juggle or do algebra. I don’t know why she doesn’t do these things. Just because...Clemmie has a great chair. Last Tuesday we went to the moon on it. I don’t know why we didn’t go to Jupiter as well. Just because...Clemmie doesn’t mind it when I bang things really loudly or chase the cat or eat the crayons. Sometimes I do these things just because."

The writer's goal was to highlight the positives of having a child with disabilities. The book is beautiful and the gift Jennifer gave me last week by sending me that book was beautiful. It reminded me of how much good is in this world. It reminded me of that "heart of life" thing again. And I really hope she knows how much it meant to me.

On Rebecca Elliott's website there is an article she did for Practical Parenting (UK) where she offers tips for parents with children with special needs. Her 5th tip pretty much spoke to me and some of the worries I've been having.

"Don't let yourself worry about the future, it will take care of itself so there is no point fretting about it now. Take one day at a time and enjoy all the great things about your child."

Sound advice, Miss Elliott.

So enjoy we did! We seized the day today and visited Mt. Lemmon. It's our mountain oasis just about an hour away.

And loosely quoting the movie The Road, "If this isn't of God, then God never spoke."

We took the kids for their first mini-hike.

(Gabe wasn't there because he was visiting his Grampa. Next time, though, we already have plans for just the three of us, sans the monkeys.)

And since there's always room for sensory stuff, Christian felt his first pine cone...

...and didn't much care for it.

We found that "heart of life" thing and grabbed hold of it today. It was in the sunlight over the mountaintop, it was in the way we wrapped our babies in sweaters and blankets in the cold mountain air, and it was there when we drove down the mountain talking about the next time we'd visit or when we'd see the snow again. It surrounded us today and it was good.
 
I know it's good.

Life Goes On.

Today I found sand in a crevice of Lola's car seat. No doubt, remnants from our trip to the beach.

This month, the month of June, brings us to a very important landmark. You see, this is the month that marks Christian turning 22 months. This is the month we will have had Christian as he is now for longer than how he...was.

He was 11 months old at the time of his accident.

I was oddly looking forward to this threshold. As we approached it, I can say with confidence that I had already adjusted to Christian as he is now long ago. As such, this month was welcomed.

It was welcomed because it was just another step in moving forward. It was more symbolic than anything. This month is symbolic of us moving on. And one of the lessons that I've not only learned, but have also embraced is that life goes on. Plain and simple. 

I think of Christian as he used to be, but not as often. Mostly because whether there had been an accident or not, he would still have been developmentally completely different anyway. And now that we've had him as he is now for the greater part of his life, it is easy to accept that this is Christian. We loved him then and we love him even more now. It's no longer about how he was born and what he was like prior to last summer. It's about how he is now and what he will be.

Do I still get sad when I see pictures of him maybe I haven't seen in a while? Oh, yeah. But it now seems like a long time ago. And it's not a profound sadness, accompanied by a dark feeling of sorrow and grief. It's no longer a sadness that brings tears or that takes up the better part of a day. It's now a dull ache that's only allowed to stay for a tiny bit. Then it's time to move on.

On Memorial Day we took the kids swimming. Lola hadn't been swimming for about two months and she's decided she now thinks the pool is so much fun. She splashed and laughed and it was fun to watch. And there was that dull ache - remembering Christian's first time in the pool and just how much he loved it. He, too, splashed and laughed. That's when the memories come - memories that are joyful and painful at the same time. The definition of bittersweet, I guess.

It's really like finding that sand in the crevice of Lola's car seat. Amazing memories, but kind of sad we aren't there. We smile, clean out the sand, and move along with our day.

So I guess this is a happy anniversary of sorts. We're celebrating Christian in the present as he is. But, more so, we're celebrating that life really does go on. And that's comforting.

Swim

Swimming will always be a part of our life in Arizona. It pretty much says on your state ID card - ARIZONA - must swim due to 100 degree temperatures. Wear sunscreen.

Swimming will always and forever be a part of our lives simply because of what happened. Christian almost drowned in a pool, in our pool. The grief and guilt I will feel about that incident will be with me forever.

But that's not what this post is about. Not really. I'm not ready to expose that black hole - gray cloud - dark shadow that follows (consumes) me at times on a public forum quite yet. Someday. I'm getting there.

This post is about swimming.

As I mentioned in the previous post, Christian went swimming on Easter Sunday.

It was awesome.

Now tell me that does not look like a relaxed little boy!

Because Christian responded so well to the water, I'm making plans to do this weekly. And, by the way, his trache stoma (hole) is completely closed and sealed, just in case you're wondering with that water so close to the area.

As I've told people about Christian's swimming on Sunday, I've gotten a few worried looks wondering how I was going to take it. I'm not sure everyone knows this, but a few weeks after the accident, Christian got pool therapy. He was no where near responsive at the time so he had no reaction with the exception of his body tightening until he was stiff as a board.

August 2009, Pool Therapy

So as far as I am doing...we've already crossed that bridge. Honestly, there was no bridge to cross if we're talking about metaphorical emotional bridges. And in retrospect, I can say that at the time I don't think I had an emotionally hard time with putting him in the pool again in light of what happened.

This is the thing...

I'm not nervous about Christian being in a pool or in the water again. Now, if it were the exact same pool where the accident occurred? Yes, that would be painful. But it's not the same pool and never will be.

If I were in a near fatal car wreck, I'm not sure I'd avoid cars for the rest of my life. 

I'm okay with it. Especially because before the accident, Christian absolutely loved the water. From the first time he was in the pool (my Gramma's pool, actually, which is where he went swimming on Sunday) he never cried, he just laughed and laughed and splashed and laughed. From then on he was a swimming nut!

When we went to Florida last summer about a month before the accident, he played in the ocean for the first time. The water was salty and stung our eyes but he didn't care. He just played and played until he couldn't take it anymore. Then he finally reached up to me when he had enough.

June 2009

He loved the water.

I feel like that is something he enjoyed so much, so why would I not give that back to him. He enjoyed Spongebob Squarepants and playing with his bouncy ball, but he doesn't know how to enjoy them anymore. Someday he will again, but not today.

If I can give this to him, and he can find a way to enjoy it again, which he seems to be doing in his own way, then we've made a connection between the old Christian and the new Christian. And any connection, no matter how small, choppy, inconsistent, or coincidental, is a joyful connection.

Brave Little Souls

So I guess the weather in Denver reads my blog! We woke up to snow on the ground yesterday. And then today was sunny and warm. What is this place?!?!

Sunny or snowing, this place we call Denver houses two very new and very cherished friends of ours. I guess they're not so new anymore. But these two friends were the first special needs Super Mommies that guided me out of the darkness and into this new special world. There have been talks of g-tubes, seizures, movement, stem cells, therapies, and the like through facebook, email, and the on the phone. We've discussed guilt and grief. I've shared troubles and triumphs and rejoiced in the smallest and largest obstacles our babies have overcome. These two friends gave me stepping stones and shared what they had learned so I could find strength to advocate for my son and learn to live this new life.

They are the Super Mommies of Makenzie and Cici.

I know I've mentioned them dozens of times. But we finally had the pleasure of meeting today! All three of us. All three of our special babies. And we all met in a "special" place called Casa Bonita. I'm not going to say why this place was so "special" but just know that there were cliff divers and gorillas involved. I'll leave it at that.

We met at noon for lunch with our kids in tow. Our brave little souls that brought us together all in their modified chairs, each one in and out of awareness of what this meeting of the moms actually means to us. I clumsily pushed Christian in his stroller through isles of waiting area surely meant for busy days. Lola was in her carrier slung over my free arm while I navigated Christian in his chair, bumping into all kinds of objects within a 2 foot radius of the moving stroller. After ordering food we went to be seated, hopefully somewhere accessible by our brood. Usually, I would get a little warm in the cheeks wondering if our seating could be accommodated.

But this time...this time I wasn't the only one that had a child who needed special seating. I wasn't the only one who needed extra room. This time I wasn't the only one with a special needs child. There were THREE of us Super Mommies with our Super Babies right there with us. I'm sure we were a sight, but it didn't matter because we were there to stay...for almost FOUR hours!!!

It was an awesome time and all the kids seemed to fair pretty well. Christian tasted honey and lemon wedges. I had about four Cherry Cokes and I didn't want the lunch to come to an end. But, alas, there are lives to get back to and Christian had ABM therapy.

Here are some pictures of our excursion...

Super Mommy Jenny with Super Baby Cici

Super Mommy Pam with Super Smiley Big Girl (Not a Baby), Makenzie

The Gang

Left to Right: Cici (she's got something to say), Makenzie (there's something way more interesting over there), and Christian (a picture looking into the camera, few and far between).

Proud Mama's.

My little guy.

All of our babies different, and yet, the same. They are brave little souls that fight every day to move, stay healthy, and just be.

I received the following story from a list serve I'm a member of. It was right after our lunch and reminded me of our kids - our brave little souls.

The Brave Little Soul

By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

slow down

I'm coming out of a few weeks of frustration. Frustration is really an all encompassing word I use for the grief, sadness, and overwhelming feelings that surface during this journey. It's really not the word that I mean when I use it because it's so much more than just...frustration.

The frustration comes from wondering when things will happen. I watch my son and wonder when he'll move, when he'll smile, when he'll be doing the next new thing. I take him to therapies. And then take him to other therapies. I create lists of things not yet tried by us. List them by priority. All of the sudden it became a mad rush. A rush to find all that I could as soon as I could to help him get better.

slow down

But I've heard that if I push him past his limits it will be good for him. Then I read that gentler movements will be better for his brain. But Botox will be great for relaxing his muscles. Then I had second thoughts. There are therapies we've attended, therapies we have planned, and therapy possibilities in the future. Hurry, hurry, hurry, there is race and I'm not really sure what winning means.

slow down

Then I was rushing. Yes, rushing again. I was rushing to some appointment, hyperbarics probably because I'm always running 5 (more like 10) minutes late, and I'm hurrying and hurrying and tailgating and cursing the car in front of me and hurrying and I hear something.

slow down

Okay. God talks to us all the time. We just have to listen. Remember?

See, these past few weeks of frustration have been filled with prayers (begging) to God for healing. But also asking God to show me something. Give me something to hold on to. Please.

When I heard slow down it wasn't the first time, so I know it wasn't just about traffic. The thing is that if I don't slow down, Christian becomes this project. A little boy, my son, who I have to heal. And that's my mission, that's my project.

He's so much more than that. He's my son. He's my boy who I'm learning about and getting to know. And I know him like nobody else, not because he can tell me how he feels or what he wants but because I can feel how he feels. And if I don't slow down I'll miss it along with all the other miracles that are easily missed if one is not paying attention. That one would be me.

So I toss my list of to-do's and I love my baby son.

And then there is a single day. A day of redemption. That day would be last Sunday when Christian's body told us he no longer needed his trache.

Time to slow down. The best miracles seem to happen on accident. And you wonder why and how and what?  But it just...is.

Last night, after a bath, I was holding my baby son in his jammies, all washed and ready for bed. I rocked him on the edge of our bed and breathed him in. He was cranky, wearing his rockstar pajamas and sporting his new faux hawk haircut. But our eyes met and in his crankiness he raised his left arm and lowered it over mine. I stared at him and saw my son in there. That boy I've been grieving for. It was him.

Sometimes our eyes meet and he looks at me and I see him again. And he stares right into my soul. I hope he knows how very much I love him as much as he can know anything at this point. I hope he feels my love.

Slowing down is mighty hard some days. Then there are days when I lean over Christian to kiss him or make funny faces and he raises his arms up to "find" me. And he touches me and it's pretty darn close to magic for me. I pick him up and he lays his head on my shoulder as his body drapes over mine. I hear his breath and it's, again, magic. Drool in my hair be damned.

So I'm making a point to slow it down. I'm taking in my son who, I swear, looks totally different, and seeing him like I haven't seen him in months. I'm holding my baby girl a little longer and snuggling with her for a few more minutes before I put her down. I joke with my first born on the way home from picking him up from school. And we laugh and play slugbug and tease and laugh some more. I can honestly say that by slowing down, I'm a little bit more in love with my kids. A little bit more healed, myself. A little less...frustrated.

So we slow down long enough for Christian's first haircut...

Look at that beautiful little neck.

Our friend, Shon, gave Christian a rockstar haircut and he did such a good job, Christian barely flinched. And, of course, mother of the year forgot her camera (because she was rushing, cough..cough) so I had to use the trusty camera phone once again.

(Better picture to come soon, I promise.)

And in case you're wondering...Christian is doing amazingly well. His oxygen levels are 97-100% all the time, even during sleep.

It was truly divine intervention. I believe that.

And Christian is amazing.

But we already knew that, too.

Candles for Christian

"Light up the darkness." - Bob Marley

We're beginning a new fundraiser!

Candles for Christian

Christian has made so much improvement and thanks to many of you, we've been able to get Christian nontraditional therapies like HBOT and Cranial Sacral Therapy that continue to help Christian in so many ways. We're looking to continue the healing by trying some additional therapy programs. These therapy programs range from an intensive therapy program in California to Anat Baniel Therapy in Colorado.

In fact, next week we're leaving to visit southern California. We had already planned for a small trip at the end of February and I thought since we'd be there anyway, why not check out Napa Center? So they were nice enough to arrange two days of therapy so Christian could try the different therapies they have to offer. Kind of like a preview for the bigger program. We're so excited.

Of course, all of this costs money. I've always said since the beginning of this journey that we would get what Christian needs, no matter what. So we're raising money to get Christian therapies that may otherwise be out of reach.

You can find the online store in the side bar to the right. The pictures in the online store are not that clear so I posted another picture in the sidebar of what the candles look like close up. The candles are from the Love That Smell Candle Company and they burn for 50-70 hours with wicks that are lead free. They come in 8 oz. jars and they are $8 each with free shipping. There are several different scents and on each candle there is a picture of Christian and a quote:

"Light up the darkness." - Bob Marley

To me, this quote really encompasses Christian's journey of finding his way out of the darkness. It's actually the journey of our whole family. The grief and sadness can be very dark, the journey is finding our way to the light. And despite that darkness that surrounded us last summer, we have found light again in healing and in the love and support of others. It is our hope that these candles can be a reminder to everyone that even in the darkness, there is light.

Thank you for your unwavering support!

The Power of Kindness

Thank you everyone who left comments on the blog and facebook wishing us a good week after I unloaded all my angst and frustration on to last night's entry. It really does mean a lot to know there are so many people in our corner, wishing us the best and praying for healing. Kind words can go a long way.
That brings me to an organization that I absolutely love. It's called The Ben's Bells Project. It's an organization named after a little boy named Ben who passed away in his mother's arms. She was so grief stricken and was in so much pain that the kindest gestures were so big to her. And nobody even knew how much it meant to her to hear kind words at that time. So to pass that along, and to help ease her grief, she started making bells. These bells were made up of ordinary clay pieces painted with ordinary paints, but put together, they became extraordinary.
People would get together to paint these bells and then they were distributed around our town, but never sold. The idea was that when a person finds a bell, maybe hanging from a tree in a park or at a bus stop, they are aloud to keep the bell forever. The message on the bell reads:

You have found a Ben's Bell. Take it home, hang it in your yard, and remember to spread kindness throughout our world.


"Remember there's no such thing as a small act of kindness. Every act creates a ripple with no logical end." - Scott Adams

This is the letter I wrote to Ben's Bells recently...

Hello!
I was introduced to Ben's Bells when I was attending the University of Arizona. I was part of a group that organized a Ben's Bells night and you came to our building and we painted pieces of clay that would soon become bells. The story of little Ben stuck with me as I have a son, too. The experience I had that night also stuck with me. It was calming and cathartic and something so positive, it made an impact on me and I never forgot it. I mostly remember the story behind Ben's Bells and how you told about how overcome with grief you were after loosing Ben and nobody knew it. That's why little acts of kindness were so important to you at the time. I would soon fully understand what this meant.
About four years later, after the birth of my second son, Christian, I accompanied my husband to the park so he could play basketball. I didn't want to go because it was an early Saturday morning but he convinced me to go. We walked to the El Rio basketball court. As I walked with him, I glanced to my left and what did I see? A Ben's Bell!!! I was so excited! I ran over to it, but for a second I felt bad for taking it and thought maybe I should leave it for someone else. My husband laughed and told me to take it because I FOUND it and that was the point. So I reluctantly took it and hung it in my living room.
In July of 2009 my second son Christian crawled out the doggy door and nearly drowned in our back yard pool. He didn't respond to my attempts at CPR but was finally brought back to life on the last attempt in the emergency room. That first week in the PICU, I truly experienced what you explained when you lost Ben. I was so overcome by grief and sadness. I would go to the store and think - nobody knows how sad I am right now. Nobody knew the pain I was feeling. And anytime someone would display the smallest act of kindness like opening a door or smiling at me, it meant so much more than they ever knew.
Christian is doing well now. He has an anoxic brain injury due to the lack of oxygen to his brain. He has to relearn everything and he has a long journey ahead of him. We have so much faith and spreading kindness means so much more to us than before. The Ben's Bell I have is now a prized possession and reminds me everyday about that first week after the tragedy and how far we've come from that time. It also reminds me that you never know the personal story, pain, or tragedy someone else is carrying and how much a simple act of kindness might mean to them.
Thank you and God bless.

I am always so touched by the kind words that people leave as comments on this blog, facebook messages, phone calls, and emails. It means more than you'll know and you'll never truly understand just how much it means until you're on the other side of tragedy. I hope you'll never know that side.

In church on Sunday the pastor spoke about being kind. You don't know the personal struggles of the person sitting next to you and you may just have a chance to make a profound difference in their life at that moment if you are simply nice to someone. It could just be a simple "Hello," to you, but it could be the world to someone else.

It was to me.

You all have been part of Christian's healing and part of our healing as a family. So I thank all of you for your kindness and understanding.

Pass it on.