See Christian and Lola's ISR video!

Wednesday, February 25, 2015

Things I WISH for New Parents of a Brain Injured Child

There are so many things I WISH. Having now been on this journey for almost six years I look back at our early days and I compare them to the stories I hear of countless other families.

The early days from the PICU to the yes, your child will live but... to going to rehab to returning home to learning how to live a different life with a different kid than the one you gave birth to - it's all very blurry, yet all very clear at the same time. Some of it makes me angry knowing what I know now. It makes me angry and frustrated for other families, too.

After you find out your child is going to live but live a very different life than you had envisioned, there is grief and sorrow and frustration and relief and tension and you're trying to learn how to put a family back together again and on top of all that you have to learn how to take care of this medically fragile child. The hospital and their highly trained medical staff take impeccable medical care and create this high, sterile standard and then they say - Okay, time to go home now. Figure it out. This is where families are lost. They are either sent home with their new child who really never leaves "patient" status, accompanied by round the clock nursing care or they're left to fend for themselves. And everything in between. A far cry from the sterile gloves and procedures of the hospital personnel.

I remember being taught systematic training with sterile gloves for trache changes. We were taught to use brand new catheters with every suction and to throw them away after each use. We arrived home to an insurance plan and DME company that almost laughed at us and said we get ten catheters a month. Total. So much to learn.

Now that I can look back on everything we had to learn and the choices that we've made as to how to go about this new life, I have very strong opinion and very strong wishes for families who are new to this life of have a child with a brain injury. Specifically for those families who had a typical and "normal" child one day, and a completely different child the next. I'm wishing extra hard for those families who had to say goodbye and grieve for a child they gave birth to, while embracing and learning to love a new child.

So I WISH the following:

To parents new to this...I WISH this had never happened to you. I WISH this had never happened to your family and especially to your child. The pain will sometimes be unbearable. The grief will always be there. And there will be some guilt somewhere. Sometimes a lot of it. And it will never, ever go away. But I WISH for you and I know that at some point, if you allow it to, happiness will outweigh the sad and the grief and the guilt. I know it doesn't feel like you'll ever be happy again but I WISH this for you. I WISH it with my whole heart.

I WISH the medical community wasn't so medical. I WISH they empowered parents. I WISH they educated them. I WISH that rather than basically saying - Your kid is gone. Here's a nurse. Good luck. It's gonna suck. - Offer parents a crash course. How to Take Care of Your Brain Injured Child: 101.

I WISH there was a crash course called How to Take Care of Your Brain Injured Child: 101. Or Taking Care of Your Brain Injured Child For Dummies. Or even What To Expect When You're Bringing Home a Brain Injured Child. Because instead we get a lot of sad looks and recommendations and doctors puffing their chests out offering their egos on a platter. None of that is helpful.

I WISH our children weren't treated as patients. Of course they're patients in a hospital. But they're also treated like patients during parent training. They're treated like patients when they're sent home with a nurse right away. They're treated like patients in their own home. These are children. They're family members. They're our babies. Encourage families to embrace that thought rather than fostering and encouraging a caregiver-patient relationship between a parent and child.

I WISH there was no such thing as a "team based model" of therapy. One size DOES NOT fit all.

I WISH for every single therapy - alternative and traditional - to work for your child. Or even half of them. But some don't and some won't. And what works for one child probably won't work for another. That's just the reality. But try it! Try everything you can.

I WISH that in home nursing care was recommended as a partnership rather than a babysitter or the primary caregiver. I WISH parents were empowered to take care of their brain injured children. Sorry not sorry but I see too many parents that are helpless and at the mercy of their nurses or the ER because they can't even change a mic-key button that was accidentally pulled out or change a trache. I WISH for parents to be empowered. To know what to do. You know what happens when parents of these children aren't empowered? The medical community gets to weigh in and make decisions that will trump the decisions and wishes of the parents eventually.

I WISH parents would get to know their children again. I know it's really terrifying. I know. But it's worth it. Don't leave that part up to a caregiver. I WISH doctors would encourage this. I WISH doctors didn't try to scare the ever loving crap out of parents. I WISH they would say, "Yeah, this is bad. But you can do this."

I WISH states would follow the lead of Colorado and California and train, support, and pay parents of children with brain injuries to care for their children. It only makes sense. I had this conversation with a supervisor for our Department of Disabilities and she said, "Well, why would we do that? That's paying parents to take care of their own children." Okay, I get that. And why would you consider that...well, BECAUSE THIS IS WAY DIFFERENT! You can't just get any babysitter from around the block to take care of your child. It's not the same. So we pay a nurse but we can't pay the parents for doing the same job? What about single moms? What are they doing? Wouldn't it be empowering to train, support, and pay a parent for caring for their children? What could be more supportive? A team based model? No thanks. Because if you're telling parents We won't pay you but we'll pay a stranger, that's like saying A stranger's care is worth more than yours. Bullshit. And that's not empowering, by the way. No wonder parents don't feel like they know how to take care of their own kids.

I WISH there was a standard of care everywhere. I WISH there wasn't a "hospital most likely to trache" or "a hospital most like to pull the plug." STANDARD OF CARE, people.

I WISH there were support groups in place upon discharge. Like, immediately. Like, in the hospital even before discharge.

I WISH everyone could have a Peg. We had an early intervention team that included a nurse named Peg. She didn't come to the house to administer medication or take blood pressure. She came to hold Christian. She read stories to him. She brought nursery rhymes. She brought special oils for massages. She talked to me and brought me little crafts I could do. It was like she was Chief of Well Being. Everyone should have a Peg, Chief of Well Being.

I WISH doctors trusted parents. And I wish parents were empowered to be trusted. I wish the decisions of parents were respected.

I WISH parents would grab a hold of their situation and take charge. This is your life. And, yes, this is messed up. And it's not fair and never will be. But don't give up! Get a hold of yourself! Yes, there is a time for crying. But don't let that become your life! Nobody will take you seriously if you can't get a hold of yourself.

I WISH doctors didn't think it was their job to "enlighten" parents by reiterating what children with brain injuries can't do. You know we already know, right? Nobody knows better than we do what our kids CANNOT do. And if we are overly positive or too hopeful (if there is such a thing), excuse us as we're really just trying to survive.

And, again, to parents that are new to this...I WISH for you and your family to be surrounded by good people who love you. I WISH for a strong, supportive, empowering team for you. I WISH for as much recovery as humanly possible. Not just for your child but for you and your marriage and your family, too.

I WISH this with my whole heart.
Thursday, February 19, 2015

Finding Normal

This blank screen can be an intimidating thing. Sometimes walking away from it and leaving it blank is easier than doing the real work and getting it all out.

And this about to be thought vomit that might not make a lot of sense but here goes...

First of all, you need to know Christian is perfect. He is doing great! In fact, I just got a call from his teacher today bragging on him. He had great eye contact all day today and he loves being held upside down. Yes, I said upside down. He even anticipates it when you bring back up, he'll push himself back so you tip him upside down again. So he was playing games with his teacher showing her he wanted to move.

We are all good. And busy. But good. We're just content and happy with where we are right now and thankful. Grateful. Every day.

There is this thing about being a special needs parent. This "thing" I don't have a name for it. I can't really blanket it over all special needs parents. We're all very, very different breeds. Much like regular parents. So I can only speak for me. And maybe those like me.

I want so much to be seen as "normal." I don't want pity for a single, little second. In fact, when people just find out about Christian I gloss over it, don't make eye contact, and I'm quick to let them know - he's okay, we're okay, it's okay. Let's move on.

I'm normally pretty social and girly and I can be petty. Petty feels normal sometimes. It feels like a luxury. I know that doesn't make sense but stay with me. Pettiness is this silly little emotion about things that are unimportant. Not life decisions, definitely not life and death. Pettiness is silly and flippant and unimportant. So being in that feels far removed from the life decisions that me and my kind make on a daily basis.

I always feel like - let's laugh a lot, things are normal, let's joke, let's tease, I'm normal, nothing is wrong, let's just be normal! It's like I'm overcompensating so nobody treats me less than normal.

But I want it both ways.

Over the holidays I had put off Christmas shopping, which was extremely stressful. I was already under a lot of stress and indecision. And you know what happens when you're not prepared and you're stressed and you're not paying attention? Grief. Grief happens.

So I'm hurriedly shopping at 10 o'clock at night down the scavenged toy aisle looking for something appropriate for Christian. I wanted to get him something age appropriate, something I think a six year old boy would like. I'm seeing characters and action figures. Playsets and Legos.

Could this work for him? How could this work for him? Nope. That's not for Christian. None of this is for Christian.

It's wasn't for him. And usually when I'm paying attention and I'm not stressed and being so last minute I can prepare and plan and really think about how to make something FOR HIM. But when none of those elements are in place that scavenged aisle is yelling at me- THINGS ARE NOT NORMAL. AND THEY NEVER WILL BE.

Yes, we create our new normal. We're very happy here. But I'm also part of a club. It's a club of parents who might deal with death. Parents who have dealt with life and death decisions. The shortened life span of my child. I have friends who've lost their children. This is the part of my everyday reality. And I want a pass. I think we all deserve a pass.

Can we have it both ways? Can you treat us normally and give us a pass at the same time? Can you laugh with us but also tread lightly and forgive us and excuse us if we don't meet "normal" expectations? I'm not sure. Will you let us be petty about something because it feels like something normal people would do? It's not a life decision. It's not about safety or medications or the future of a child. It's just pretending to be normal for a second.

Or no. Maybe we can't have it both ways. Everyone has their tragedies. Are mine any greater than yours? Maybe we do have to choose between being treated like we're "normal" and held to the "normal" standards of how a human being should act. Choose that or be treated as the sad mom of a disabled child. Definitely don't want that role.

I want to laugh and tease and be petty about things. But I also want an addendum where you remember the gravity of the reality we have ahead of us and the reality that was put behind us. A wise woman once told me "it'll all come out in the wash!" So at this point in my life I look around and I'm surrounded by people who are just what I described above. They know my heart. They know our family. They forgive. They understand. And they laugh a lot about petty stuff.

I get it both ways.
Sunday, December 28, 2014

Catching Up

Yes. We are alive!

We survived the holidays and now we're spending a lot of much needed "do-nothing" time. 

But let me catch you up...

In August I got to see some of my fellow Near Drown Tribe Mommas! Looking beautiful and strong as ever!


And then...AND THEN...it was Halloween.

And you know how we do Halloween!

Christian gets a lot of attention and a lot of staring because of his wheelchair and the way he looks. But on Halloween we get a lot of stares because everyone wants to know about his costume! All the kids want to walk with him, they come up and say hi, his wheelchair costume is a real conversation piece. As a matter of fact, maybe we should have a wheelchair costume year round. It really makes people feel comfortable talking to Christian and talk to us. Hmmmm....


Christian was a Florida Everglades Park Ranger. Gramma and Grampa got him a little park ranger uniform last year from Florida (hence, the specificity) and so it only made sense to get that boy a jeep!


Christian also gets to participate in Special Olympics with his school. And he participates in the bowling portion.


He's a pretty happy boy. Mostly unimpressed with a lot, but happy nonetheless.


He's still standing!


And he and sister are best friends.


A few weeks ago we went to Disneyland for the first time during the holiday season and it was magical! It was our first time back since Disneyland changed the rules of accessibility. They were still just as accommodating and we still had a separate entry in most of the other older rides. But for the new rides in California Adventure, we did still need to wait with everyone else because the lines are considered handicap accessible. Otherwise, we could get a fast pass and come back later. It was fine and it all worked out. And it truly does weed out those who don't really need handicap accessibility. 




With all these excursions and the trip to Disney I think what makes him happiest is hanging out at home in jammies or in Mom's bed all day snuggling. He did get sick a few weeks ago and I was really worried about it because it was probably caught from me and sister. And it hit us really hard. So when Christian had the fever and signs of laryngitis I'm not going to lie. I was scared.

But this kid...he got the fevers, sounded hoarse, got sick, but then bounced back in record time! I swear by my apple juice flush! As soon as I see signs of sickness I hook him up to the pump for a 24 hour continuous drip of apple juice, Gatorade, and extra water. Apple juice for a few calories and Gatorade to keep hydrated. No blends or regular food. I run this for about 2 days. And I swear it works every time. Colds that would drag for 1-2 weeks are in and out within 3-4 days. 

And then I have a happy boy again.


And I think this might have been Christian's most active Christmas morning. I would hook his finger into the fold of the paper and tell him to pull and he did! I think he really liked it and I can't remember a Christmas where he was that active.



Christian has been out on school break and we have caught up on a lot of snuggle time. It amazes me how much of a silent connection we have. His favorite place to be is in my arms. 


Merry Christmas and Happy New Year!!!


Thursday, August 7, 2014

Turning Six, Starting First Grade, and Riding the Bus

Our lazy summer is over!

Christian is back at school and just started the 1st grade on Monday. More on that in a second.

FIRST, I have to announce that someone turned SIX YEARS OLD last Friday!


Whenever Christian's birthday comes around I try to think outside of the box a little. I don't really like traditional birthday parties for him because he doesn't really get the full enjoyment out of them like we do. We had one birthday party for him a few years ago where we did all sensory stuff with some of his buddies and that was really cool but I can't repeat that every year! 

Of course, I did make him a cake and have family over on his actual birthday. Because everybody needs cake on their birthday. EVERYBODY. 




So this year I decided we should go on a staycation. Because we live in a very hot place, all of the local resorts and hotels offer really low rates for the summer because nobody in their right mind would consider visiting here during the hottest months of the year.

I also wanted Christian to be able to sit in warm water. Even though it is really hot here, all of the pools are still cool. Obviously, so it's refreshing. But Christian doesn't like it. He stiffens right up and gets goosebumps everywhere. So I booked a place that had several hot tubs.

And it was so nice! I'm so glad we did it. As soon as I took him into the hot tub he melted. He just loved it! It was the perfect birthday celebration. It even rained while we were in the hot tub and he didn't even care. He was in la la land.




After the birthday staycation had come to an end it was time to get ready for school! It wasn't going to be such a transition because his kindergarten teacher moved up to first grade with him and so did a lot of his classmates that already knew him. Last year I decided to make a "Meet Christian" booklet to read to the kids on the first day of school. I wanted to let the kids know about him, what he likes, his wheelchair, his g-tube. Nothing fancy, but I didn't want the kids to be afraid of him. This was his book from last year.




There were a few other pages that told the kids his favorite colors, his favorite toys, and about how he eats through his tube and tastes with his mouth. 

This year I made a new booklet all updated for 1st grade.

I forgot to take a picture of the finished product but his aid read it to his classroom.

Aaaaand, Christian is now....TAKING THE BUS TO SCHOOL AND BACK!

I feel like he's so independent now.


Yeah, so that was a big step.

It has gone well, though. His teacher texts me a picture of him when he gets there so I know he made it okay. He seems unfazed by all of it. Like he's an old pro.

And all of this - the birthday, the staycation, starting school, and riding the bus - it all happened within the last week!

No complaints, though. Just excited for Christian because he loves being around other kids and I know he's happy seeing his aid and his old buddies.

Here's to a happy school year!




Tuesday, July 8, 2014

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
Tuesday, May 27, 2014

Christian Graduated Kindergarten

Christian graduated kindergarten!

And it was such a big deal.

Probably really only to me. I know a lot of people think we make too big a deal about celebrations and graduations and kindergarten is hardly worth celebrating. Those people might think having a graduation for kindergarten might be too congratulating for accomplishing nothing but kindergarten - play dough, ABCs, and snack time. Big deal. Those people might think graduation ceremonies should only be reserved for completing high school or college. Surely not for little kindergartners smelling of graham crackers and sandbox.

I completely disagree.

My little boy graduated. And he had a ceremony and everything. We were there in the front row and leading up to it I couldn't help but remember almost five years ago the first night in the hospital when the doctors told us there was nothing.

We aren't transporting him unless we can get a pulse.
The EEG is flat.
He is probably brain dead.
We should consider letting nature take its course should, say, his heart start to give out.
We don't know if he'll make it the next twenty-four hours. 

And then I'm sitting there in the front row watching him receive his little graduation certificate and a token for a free scoop of ice cream from Culvers.


His aid, who loves him so much, dressed up just for him. 


Everyone loved and kissed on him. People I didn't even know but that had come to know Christian. He has got his own crew now. And when he finally received his lei like all the other kids and his aid, dressed up in her pretty skirt, wheeled him away, and everyone cheered. Even people in the back of the cafeteria. Other kids' parents came up to us when the ceremony was over just so they could say congratulations to Christian. 

I had tears but I didn't let them go. The ugly cry could have happened, and trust me, it was there beneath the surface, but I held it in. I didn't want to embarrass Christian in front of his friends, ya know.

No, it's not what I pictured. And seeing him sit in his wheelchair next to his friends - "peers" that are his age - a typical five year old is so foreign to me. See, Christian is like this really cool baby who likes to snuggle and makes baby sounds sometimes. Only he's five and big. So he's a big, cool, baby. But those kids in his class? They're like...kids. That's what he's supposed to look like? There's no way. Those kids looked way too big. And active. And they probably smell like graham crackers and dirt.

The end of the year, as I found last year, is bittersweet. There's always a moment that pronounces just how not like the other five year olds he is. Last year it happened when we went to the zoo and all the other kids ran off and the other mom, running after them, chatted about play dates and what their kids were doing for the summer. We were on our own path. It became our own zoo trip, split from the crowd. Oh, yeah. I forgot for a second that we're different. 

I mean, obviously I know we're different. We live it every single day but little things will remind me. Not just the chair or the g-tube or the obvious things. But the little things that divert and separate our paths from the rest of the crowd catch me off guard without me realizing what's happening. This year it was watching him next to his friends - these active, ants in their pants five year olds. Oh, he's supposed to be acting like that? He's supposed to be that big, stand that tall? There's no way. I don't believe it.

Christian doesn't smell like graham crackers and dirt. But he smells warm and snugly. Like a big baby. And he had a really great year full of field trips and friendships just like all the other kindergartners. Even more so with his SPED class. 

What I know for sure is that he is loved. He is loved by all who meet him. He exists and he breaths and he smells like a baby. He smiles and adores his aid. He might not play in the dirt or eat graham crackers but I've picked him up from school with a red tongue from strawberry Eegees and he might still have some green paint on his toenail from a class project. He's part of that school and they embrace him and love him. He has done so well transitioning and tolerating a full day of kindergarten and next year he'll be riding the school bus! 

So my baby graduated kindergarten. And nobody can tell me it wasn't worth celebrating. We didn't think we would have this. However different it might look from what we pictured, he is here. He is alive. And he is totally worth it. 

First and last day of school.







Monday, May 5, 2014

Santana

I went to a funeral last week.

His name was Santana. He nearly drowned about seven years ago. After his near drowning he struggled a lot. Santana's was one of the first stories I followed.

Fresh out of our trauma, his story scared me.

Wait. You mean these kids don't fully recover? You mean they'll be profoundly disabled? Suffer seizures? Their bodies will transform and their faces will look different?

Not my son.

I thought.

Then my son was profoundly disabled. He had seizures and his bodies twisted and toned. His face looks different and somewhere along the way I realized there was so much about Santana that I saw in my son.

At first it terrified me. But after learning to love and accept my son as he was going to be it wasn't so hard. I went to meet Santana while he was sick in the hospital a few years ago. He had soft skin, warm from a fever. I wasn't terrified. I just felt connected in some strange way. Those big brown eyes - they were filled with life. It was a life of struggle but it was life, nonetheless.

His mom, Lindsey, and I have attended the retreats for near drown moms in Seattle. Over the years I watched Lindsey offer support to other moms and kids, no matter their ability, even though Santana had a rough go of it. Even though Santana suffered botched surgeries, long hospital stays, and crippling seizures, Lindsey still found it within herself to offer supporting comments to other mothers.

And when I met her in person she was so goofy and bubbly and fun! Although her life with Santana was full of pain and struggle, she managed to be all those things.

I waited over a week to write about Santana's funeral even though it's been brimming since. He passed away peacefully in his mom's arms after getting very sick and his body showed signs of shutting down. He was tired on this earth and it was time for him fly.

So I drove up to his funeral service. It was an unseasonably rainy and windy day. The service was held in a building of windows so we could see our beautiful desert. The windowed room was packed wall to wall, standing room only. Dress code was Superman shirts or the color purple for drowning impact awareness. There was a sea of Superman, Christian and I joined in our Superman shirts, as well. It was a sad day but there was hope in the air. Santana was free. I'm sure everyone in that standing room only building was visualizing Santana running free. It was surely not the end for him. It was just the beginning.

He passed away on the morning of Easter Sunday. The day of Resurrection. No better a day for such a Superman.

The service was beautiful. And after it let out everyone released purple balloons into the grey sky. There were so many! Santana had a motorcade escort to his final resting place. At the grave site I heard his grandmother whisper, "I love you so much," before she put a flower on his tiny coffin adorned with a hanging Superman cape. Through the wind and the traffic and the chattering kids, everything was silent in my ears except for his grandmother whispering.

You don't understand. You might think our life is hard, that these kids have such painful lives but they are filled with so much love. And if you think of all of the people out there who go through their entire lives feeling unloved and like nobody cares about them, isn't it amazing that these kids will never feel that?! They will only feel complete and unconditional love, no matter how short their lives might be.

I live in a world where kids die. I say this often, probably more as a coping mechanism so I can protect my own heart. And Santana isn't the only child like mine that has passed away over the last year. I think there might have been five more children and two that almost made the flight but decided they wanted a little more time here on earth. I'm well aware that Christian's life might be short. But, dammit, if he doesn't feel love and adoration every single day, every second of his life.

I was talking with a friend one day about this subject and she said, "Isn't it better to feel loved, even though your life is short, than to go through a long life never feeling loved at all?"

I believe with 100% certainty that Santana was loved every day of his life. And that funeral service, fit for a Superman, was filled with so much love and sadness and joy for his freedom.

I often wonder about parents who post really benign complaints on social media about their children having minor issues or fussing with really unimportant aspects of life. I wonder if they know what it's like to give your child's body back to the earth. To have to walk away. To be the mother of three, when on this earth there are only two children. Every family picture is missing a child. The observation about family pictures isn't meant to be shallow but to understand what it's like for a mother and a family suffering such profound loss.

I can also tell you that where Santana's journey ended, we were beginning ours. Pulling out of the church and into the motorcade I noticed right across the street was where Christian had his first HBOT session three weeks after his accident. The irony was not lost. And I don't know if irony is the right word. Coincidence, maybe? It was sobering. But all of our journeys start and end somewhere, don't they?

Santana's journey was filled with love. This I know for sure. There were hundreds of people in attendance, including some of my near drown moms! From Las Vegas, from Oklahoma, from Tucson, we came from all around and when the service ended we waited for Lindsey. These Mamas right here are the strongest I know.


And sweet Santana, you touched so many lives. You were one of the OGs! Now everytime I see someone with a Superman shirt I think of you. Everytime I brush a tiny mohawk into Christian's hair, I think of you.You paved the way for some of us and for those that might unfortunately come into this world. I know you are playing and laughing and watching over your family. They are blessed by you. We all are. 

"I would rather have thirty minutes of wonderful than a lifetime of nothing special."
-Shelby, Steel Magnolias

Sleep softly, Santana.




Popular Posts