The Other Side of The Other Side

It has been a while since I've spent any time in this space... Life has been busy and not afforded me much time to spend here. And in all honesty, this space has been consciously avoided at times. But we are nearing that time of year again when the air is crisp and fills my chest with dread. My mind starts to drift places that I typically don't allow it to stray. And there is something that has been on my mind since Monday, July 22nd...

When Ellie died, my life changed forever. In fact, the second Ellie entered the PICU in critical condition, my perspective on everything instantly changed. It quickly became obvious that those who had not stood where we had did not understand. Most tried, but never really understood. I found great comfort in those who were on my side- The Other Side. 

The Other Side... On this side, a nurse has looked at you with incredibly sad, knowing eyes. A doctor has sighed before walking up to you to say the words that you will remember forever. On this side, you have had sleepless nights at the hospital and spent hours in prayer, begging for a miracle. You may have had a conversation with a serious man in a tie that ended up with you picking out a casket or burial spot for your loved one. On this side, you have walked back through your door wondering what the hell has just happened to your life.

It is hard on The Other Side- impossible at times. Suffocating, lonely, desperate and out of control. It is sad, full of regret and guilt. To me, I could almost see a physical wall between me and those who were not on The Other Side. Being on The Other Side is all consuming and it is blinding. It isn’t that you stop caring about those you once stood with, but you just can’t see past where you are at now.

The wall never completely goes away, but I think, over time, it becomes more transparent. You get glimpses of what is going on over there and sometimes remember what it was like before the wall. You remember that there are loved ones still over and maybe, you understand that it hasn’t been easy for them either. It is hard on them having you on The Other Side…

On the evening of Monday, July 22^nd, 2013, Dave and I were powering through another dinner with the kids. Life here was our normal. Kids throwing food on the floor, demanding more fruit and Dave and I were looking forward to bedtime! We had no idea that we were about to cross over to The Other Side of The Other Side.

Right at the end of dinner, Dave’s phone rang. It was the call no one ever wants…

Our brother-in-law, Travis, and one year old nephew, Layton had been in a bad car accident. All we knew was that they were on their way to the trauma hospital and Dave’s sister, Chrissy, was on their way to meet them. We made plans for my mom to come sit with your kids after they were in bed so we could go down there. Over the next hour, we got confusing bits of information from various people but it became obvious that the accident was much worse than we assumed…

Travis and Layton had been on their way home, when a man fleeing the police, driving down the wrong side of the road, ran a red light and broadsided them. Both were air-lifted to the hospital and emergency personal at the scene were certain that Travis would not make it to the hospital. Layton had a small brain bleed in one ventricle and a bruise on his temple. Travis had a larger brain bleed, a collapsed lung, broken ride, large facial laceration and internal bleeding. Both were intubated and sedated in the Trauma ICU when we arrived.

From the beginning, the doctors were pretty sure Layton would be just fine. And he was. Within a week and a half, he was out of the hospital and mostly back to himself. I have no doubt that during that car accident, his cousin Ellie, laid down right over the top of him. It is a miracle that this beautiful, beautiful boy survived with such few injuries.

At the time of the accident, Chrissy was seven months pregnant. And there were times during those first couple days, when we weren’t sure if that baby would ever get to meet his Daddy or at least the Daddy that the rest of us knew. Conversations were had about survival, catastrophic brain damage, long term care…. It was devastating. It was shocking, heart-breaking and mind numbing. In an instant, the rug was pulled out from all of us. In a split second, everything changed.

As I stood alone in my nephew’s room, next to his crib, holding his hand, I listened to the nurse in the next room explain Travis’ injuries to his wife, parents, grandparents and sisters. I thought about my sister in law Chrissy, and I was sick for her. I knew how I felt as the sister in law to Travis and aunt to Layton. I couldn’t imagine how horrible this was for her. To be seven months pregnant and have your one year old intubated in the ICU and your husband- your support and other half- in the room next door with life threatening injuries, is way more stress than one person should ever have. It was tragic and unfair…

It was there in that quiet room, standing next to my unconscious nephew, that it hit me- this is what it feels like to be on The Other Side of The Other Side. This beautiful, innocent family that we love so much was suffering and hurting, and we were powerless to help them. There wasn’t one thing we could do to make it better. I didn’t have words to make it not hurt so much and I couldn’t do anything to make it go away. We couldn’t make the doctors stop telling her about all the bad things that happened to her family and we couldn’t erase the vision of her son and husband lying in hospital beds from her memory. And when everything was “calm” for the night, we got to go home to our kids, together, who were safe and sound in their beds, and leave Chrissy keeping vigil at her boys’ side.

We were sad, angry, anxiety-ridden and shocked. We hurt for Travis, for sweet little Layton and for Chrissy. We wanted it all to go away. We were sad for not being able to be at the hospital with our family every moment… In these moments, I began to understand how our friends and family felt when Ellie was sick, and after she passed, and when Levi was shortly hospitalized for “meningitis.” They not only hurt for themselves, but for our children and for us. They wanted to make it better, make it go away, yet they were powerless. They were left to hand out hugs and bring bottles of wine, all the while knowing it wasn’t enough. They were grieving for themselves, and for us. They too, had sadness, anger and pain. It wasn’t the same as mine, but just as real.

As I’ve said before, I have very little recollection of many aspects of being in the hospital with Ellie, and the few days after she died. And for that, I am extremely grateful. I most certainly have aspects of PTSD, and can’t imagine how it would be if I had to carry around memories of everything that happened. One thing I don’t remember is how our friends and families were notified when it came time to say good-bye. And I don’t want to know. It might be selfish, but I don’t want to know how it all went down. I don’t want to know how they felt at her funeral, how they felt carrying her small casket or standing at her graveside. I don’t want to know, and I am so grateful that no one has forced that on me. I’m not sure I could handle it. I feel like I can hardly handle my own grief- I think it would kill me to know how hurt our loved ones were and still are.

But being on The Other Side of The Other Side has reminded me just how much our families and friends went through when Ellie died and again when Levi got “sick.” It reminded me that they too were traumatized and forever changed. They dealt with all of that while standing by us while we drowned in our grief. And for that, I am forever grateful. I’m thankful they had the strength to endure it and eternally sorry that they had too. Because if I learned one thing this summer, it was that even though being on The Other Side is nearly impossible, it’s not easy on The Other Side of The Other Side either.

*****

Travis walked out of the hospital just over three weeks after the accident and graduated from outpatient therapy after just two weeks with minimal residual injury from the accident. He isn’t completely 100% yet, but he will get there. Less than two weeks ago, he was there by her side, when Chrissy gave birth to our new perfect and completely adorable nephew, Nash. Without a doubt, we witnessed a miracle this summer….

The second lesson I learned this summer- sometimes there are happy endings…

Happy Mother's Day

Happy Mother's Day to the best moms we could ask for! We wouldn't have made it through this last year without you!

And to our wonderful Grandmas!

I am so thankful for the four perfect little people that made a Mommy!

10 months x2

So the babies are actually 11 months old today- so I suppose that I should get this finished up before I forget!! yikes I'm behind!

I cannot believe that the babies have entered double digits. I can't believe that they are now older than Ellie ever was. This milestone was much harder than I even anticipated that it would be. The several rounds of fevers the kids had certainly didn't help at all. But we got through it, and the babies are double digits!

Levi
Weight: 18lb, 4oz.

Diaper Size: size 4

Clothing Size: 12 months

Nicknames: Buddy, Giant Baby, Mister

Feeding: Levi still takes about six bottles a day of Gentlease formula. He does a good job with his purees, and is finally doing better with solids. However, we are still very, very slow to introduce them as neither baby does a great job. He's had bits of kiwi, mango, banana (so not a favorite- he hates them!), carrot and avocado. Plus the puffs.

Sleep: Levi usually goes to sleep around 7:30pm and that's a stretch for him. I think he would be happier going to sleep a little earlier but that doesn't really work with our schedule- sorry buddy! He takes to naps a day, and they are usually pretty good. However, they started to get sick at the end of the month, and that really put a horrible wretch in the schedule. Sick babies are not sleeping babies!

Firsts: First Baby Shower- one neighbor threw a shower for another and the babies went with me to celebrate. Levi met his friend, Jason for the first time! Jason is the son of my good friend from college and we were soooo excited to finally meet him! St. Patrick's Day. We didn't do anything, and in all honesty, the kids didn't even wear their cute outfits until the next day- that's what happens when Mommy doesn't feel good I guess!

Skills/ Milestones: Getting up on his hands and knees- he is so close to crawling! He does this cute little army crawl/ scoot thing! Standing up at the couch without much help. Plays Patty-Cake. Improving on his self-feeding skills. Doing a great job waving and even does it without being prompted! Turning pages of a book. Got a tooth on the top- three total!

Words/ Noises: Ma-Ma, Da-Da, Ba-Ba, Ni-Ni

Life with Levi: Levi is observant and very focused. He is reserved at first but his little personality is really emerging. He is so silly! Once he decides that something or someone is ok, he will gladly share his smiles. He loves to cuddle and is so sweet with stuffed animals and dolls. Levi has finally started to fight back a little bit when Addy takes things away. He is becoming super interested in books and really likes to look at the faces of things. Levi is a pretty laid back baby but when he is tired, hungry or not feeling well, he is quick to cry- and it is a very pathetic cry. When he sticks his lip out, he looks just like his brother! I could just cuddle him all day long! And he'd probably let me too!

Addy
Weight: 16lbs

Diaper Size: Size 3

Clothes Size: nine months for most everything. But some shirts and dresses are 12mos.

Nicknames: Buggy, Bug, Buggers, Little Missy, Stink Face, Buglet

Eating: This child is going to blow away in the wind, if she doesn't start eating more! A somewhat nasty cold and ear infection really put a damper on her already finicky eating habits. Towards the end of the month, she was only eating 2-3 oz about six times a day. She only eats bites of her purees and bites of whatever solid we give her. She has eaten chunks of kiwi, carrots, apples, avocado, mango and banana. She does not like banana either! We can usually get her to eat puffs, but she has even been refusing these lately :(

Sleep: Addy went from sleeping almost all the way through the night for over a week, to having to be held ALL night long. Being sick really made it hard for her to get good sleep so we ended up with her in our arms for pretty much the whole night. I also think that not eating during the day made it hard for her to rest well at night. She is generally taking two naps a day, but with the illness she has been taking little cat naps on and off all day.

Firsts:  First Baby Shower- one neighbor threw a shower for another and the babies went with me to celebrate. Addy met her friend, Jason for the first time! Jason is the son of my good friend from college and we were soooo excited to finally meet him! St. Patrick's Day. We didn't do anything, and in all honesty, the kids didn't even wear their cute outfits until the next day- that's what happens when Mommy doesn't feel good I guess!

Skills/ Milestones: Addy is almost crawling. She is sooo close! Days away I would guess! Plays peek-a-boo with blankie and also does a pretty good Patty-cake. Standing up at the couch or holding onto our hand- she thinks she's so cool when she does this! Addy waves, has starting pointing, and is pretty good at feeding herself. Addy got a tooth on the top!

Words/ Noises: Ma-ma, Da-Da, Ba-Ba, MA-MA!!!, mo-mo (more), Hiiii, he-he. Ba-ba (which I think is for her bottle). "inky"- stinky. Ba (ball).

Life with Addy: This little stinker sure gives us a run for our money! (and I can say that because we did in-vitro and we did actually pay for our children!) She is so funny, mischievous and too adorable to get mad at. Addy craves attention and gets rather annoyed if she's not the center of attention. If people are laughing and she isn't directly involved in the situation- she laughs anyways. Even from across the room. Her stink face cracks me up and she knows even her "I'm annoyed with you" face is funny. We see her stink face quite often these days and I can only imagine what the teenage years are going to be like with this one! She likes to pick on play with her brother and when he isn't with her, she definitely notices. There is no way that he gets to do something or have something that she doesn't. Addy is good stuff, that's for sure!

Some pictures of our small people-

What I'm sick of...

So you're sick of hearing about autism huh?

Sick of hearing about how the government won't step in and help our kids. Sick of "autism awareness." Sick of hearing about this study, or that study. Sick of hearing "one in fifty."

Guess what?

I'm sick of it too.

Actually, I'm sick of a lot of things.

I'm sick of spending all week driving my four year old all over town Monday through Friday. And I'm sick of carting two ten month olds along to sit in every germ infested waiting room along the way.

I'm sick of scheduling appointments. I'm sick of specialists and I'm sick of paperwork. Every new doctor, therapist or specialist requires the same information but in a slightly different format. I'm tired of filling out hundreds (yes, at this point it's been hundreds) of forms that want me to detail exactly how delayed my child is. And I'm sick of arriving at the appointment only to discover that they haven't bothered to read any of the paperwork I spent hours filling out and want to instead rehash everything while my impatient and anxious child obsessively opens and closes the office door. I'm sick of loading three children in and out of the car four to six times a day.

I'm sick of being a stay at home mom that doesn't do anything with her children except for going to appointments. This isn't what I had in mind when I pictured staying at home with my children. I pictured music class, ECFE playtime, trips to the zoo and park. I didn't picture my oldest being so stressed out by music class, or new places that we are forced to stay home. I didn't picture raising my children in a waiting room with a bunch of strangers who ask too many questions and make too many judgmental faces. I never pictured autism in my life. I certainly didn't picture autism running my life...

I'm sick of spending my time online looking up new treatments, researching supplements and map questing clinics. I'm sick of finding out that the newest, best, most promising treatment isn't "covered" or not available in this area. I'm sick of hearing how autism is a "behavioral issue" or "mental health problem." It's not. It's a MEDICAL issue.

I'm sick of hearing about gluten-free, dairy-free, soy-free, dye-free, preservative-free, non-GMO, cage-free, grass fed food. I'm sick of hearing about toxins, plastics, chemicals, sulfates, formaldehyde. I'm sick of talking about vaccines, antibiotics, probiotics, cod liver oil, vitamins and inflammation markers. I'm sick of worrying that every. single. thing. my children come into contact with is further poisoning their bodies and setting them up for a lifetime of struggles.

I'm sick of the lack of support for families dealing with autism. When your child is diagnosed with autism, no one tells you what to do next. You get a pat on the back, and a "good luck with that" look before you're sent on your merry way. I'm sick of finding out we are on our own to help Max. I'm sick of there being no expert experts. I'm sick of pouring our time, money and energy into every treatment, all the while knowing that there are no promises. I just want someone to have the answers- all them, and the right ones.

I'm sick of hearing that "I just don't know how you do it!" Guess what- I don't either. I'm barely hanging on. I'm doing it at the expense of my friendships, my marriage, myself and at Levi and Addy's expense. I hardly have time for Ellie's Light. And to me, this means I don't have for Ellie. I'm sick of explaining that we can't do this or that, because we have appointments or because my child just can't handle something like that. I hate the panic attacks Max gets when I have to leave him. I'm sick of watching the neighbors sit and chat outside while their children happily play together. I'm sick of feeling like an outsider.

I'm sick of working my four year old like a dog. I'm sick of watching him struggle with life's easiest tasks. I hate that he is missing out on the simple joy of childhood friendships. I hate that he has been robbed of so much joy because his body is under attack from something we cannot identify. I'm sick of seeing his tears over things like new shoes, a simple change in routine or having to take off his socks. It kills me to watch life be so hard for him. I'm sick of waking up in the morning and wondering if it will be a day of cooperation, flexibility and focus, or one of meltdowns, rigidity or stress. I'm sick of watching my child function in a world all of his own- one that I don't always understand, and that I'm not always welcome in. It's heartbreaking.

I'm sick of our society choosing money over our children. Our government has the power and ability to drastically change the lives of our children. And they refuse. Instead, "we" allow big companies and their pocketbooks to control the way we grow and process our food, treat our livestock and manufacture toys. I'm sick of our kids- our one in fifty kids- not being acknowledged. I'm sick of everyone talking about what a problem autism is in our modern society- but NO ONE doing anything about it.

I'm sick of Holland. Screw Holland. If I wanted to go to Holland, I would have bought a damn ticket to Holland. I'm sick of people pressuring special needs parents to be all puppies, sunshine and rainbows. Yes, we love our children. I love Max more than anything. And we do find so much joy in him. Even if Max never makes any more progress towards "normal," we love him. But because I love him so much, I refuse to just accept. Max deserves more than that. All of our children deserve more than that. Because of that, we need to be honest. We don't need to be made to feel guilty about being stressed. We are not complainers. We don't always just have to accept that hand we've been given. We get to be mad. We need to let people know how hard it is and how pervasive autism is. I'm sick of empty platitudes. Don't tell me your sorry. Help us. Help us help our kids. Be sick of autism with us.

So yeah, I'm sorry your sick of our puzzle piece logos (don't even get me started on those!), and our blue lights. Do something about it. Because we're sick of it too.

Nine months, nine days

Today Addy and Levi turned nine months and nine days old.

The day was spent doing mostly normal things. We took Max to therapy and school. Did some dishes, laundry. Lots of playing, a lot of Patty Cake and I stole many hugs and kisses.

Levi and Addy had their nine month well child check today. It was mostly a normal well child check- except for the conversation regarding their older sister's autopsy report. Our wonderful doctor assured us several times that the babies were perfectly healthy. Nothing APPEARED to be wrong with them.

As he said this, we both knew I only half believed him.

After all, Ellie was once nine months and nine days old too.

The day Ellie was nine months and nine days old, I also stole many hugs and kisses from her. In fact I stole hundreds- probably thousands. The day Ellie was nine months and nine days old, she had our undivided attention for the entire day. She was the only thing we could see that day.

But the day Ellie was nine months and nine days old was nothing like the babies' ninth month and ninth day.

Ellie spent her day fighting. Fighting against something she never had a chance of beating. On Ellie's ninth month and ninth day, she woke up at 2am and gave me a goodbye smile. Her day was filled with tubes, needles, bags and vials of medication. On her day, dozens and dozens of people fought with everything they had to keep her with us.

On Ellie's ninth month and ninth day, she disappeared before our very eyes.

As I watched Addy and Levi laugh and play today, I couldn't help but see how alive they were. Their eyes sparkle, their laughter vibrates right into my core. Their brightness shines through the whole house... As much as I told myself, I wasn't going to let my mind go there- it did. All damn day.

What if from out of nowhere- they were taken today too? How is it possible that on her ninth month and eighth day Ellie was this alive, and then the next day, not? How does that much light just disappear?

Its been two years, four months, two days and 17 hours since Ellie died.

It still doesn't make sense.

9 months x2

Levi
Weight: Not really sure- we go in for the well child check this week.

Diaper Size: size 4

Clothing Size: almost everything but fleece pjs is 12mos.

Nicknames: Buddy, Giant Baby, Cub-a-Roo, Flipper

Feeding: Levi takes about six bottles of Gentlease Formula throughout the day. He usually wakes up once during then night to eat- more often he is starting to make it until about 5-6am! He learned how to hold his own bottle! He eats almost every puree we give him. He definitely likes fruit more than the veggies. He has an obsession with Puffs. He gets this certain little whine that means he wants Puffs. And when you show him the container he gets SO excited! Its the cutest thing! The other night, he ate a quarter of an avocado the wasn't pureed- just cut up into little pieces. It's really the first time he's done well with something like that! Occasionally, he can get a Puff into his mouth but he still really hasn't figured out the whole feeding himself thing yet. As long as we don't put cold water into his sippy cup, he does really well with it.

Sleep: Levi does great in his crib! He usually turns on to his left side or onto his stomach. Since learning to put his own nuk in, there aren't too many times we have to go in there at night. He usually goes to be around 7:30am and is up at 6am. He is ready for his morning nap but I usually try to keep him up until 9am. He then takes an afternoon nap from about 2-3pm. Unfortunately Max's schedule really interferes with morning naps. They aren't as willing to nap in their car seats now. Levi needs his nuk and blankie with him when he sleeps and this boy sure loves his blankie!

Firsts: A trip to Nickelodean Universe on one of Max's day off. Levi was pretty quiet when we were there and just took in the sights. Swinging- We put a sensory area in the basement for Max and we put the outdoor swings down there for the babies. The first time, Levi was freaked out. But now he loves to swing down there! Valentine's Day- really, they had no idea. Levi got a small new toy, an outfit and a bath toy that he has to share with his sister.

Skills/ Milestones: Rolling all over the place! Just barely starting to show interest in maybe trying to get up on his knees sometimes in the near future. Stands up really well! He can almost stand up unassisted at the couch but sometimes forgets what he's doing. Peek-a-boo expert. He can every predict what direction you will come from if you are taking turns peeking out from different sides of something. Getting better at that pincer grasp. Holding his own bottle. Holding things with his feet- I swear he thinks they are an extra set of hands! Occasionally he will wave, but it's with a fist instead of an open hand. Gives kisses and actual hugs!

Words/ Noises: Ma-Ma, Da-Da, Ba-Ba, Ni-Ni (means he's tired)

Life with Levi: Levi just gets funnier and funnier all the time. He cracks us up all the day long! He does this silly face and dance when he's excited- which is pretty much all the time! He's such an easy-going and laid back baby. He only cried if he is hungry or tired. Even then, it's more of a whine. He doesn't often actually cry. Levi is pretty willing to let anyone hold him, but he definitely keeps an eye on me and sometimes he does just want Mommy. He is patient and tolerant, especially of his sister who is always up in his business. He is so sweet! He gives real arms around you, squeezing hugs. He loves to cuddle. He's smart and focused. He likes to look at books and doesn't seem to miss much. Levi is pretty amazing.

Addy
Weight: not really sure- we will see this week.

Diaper Size: Size 3

Clothes Size: nine months for most everything. But some shirts and dresses are 12mos.

Nicknames: Buggy, Bug, Buggers, Little Missy, Stink Face

Eating:  Addy got her last bit of breast milk on the day she turned nine months :( Now she is just one straight Gentlease formula. I'm not sure that she would need to Gentlease formula but since Levi does, it's just easier to have her on that too! Addy has gotten WAY better at accepting the purees. She has always done great with the fruit, but eats most vegetables now too. Even if she doesn't really like them, she'll at least take a few bites. Addy did pretty well with the small pieces of avocado the other day too. She will occasionally still gag on something but I think it's mental thing because we can always see it in her mouth. Solids will be slow going with her I think. Addy is awesome at picking things up off her tray but refuses to put them in her mouth. She also does well with her sippy cup- but she prefers to throw it on the floor. Addy also likes puffs and would eat them all day long if we let her.

Sleep: Addy usually goes to sleep at 7:30pm. Sometimes she will wake up shortly after we put her to bed, but usually stays in their now. Once or twice a week, she will stay up until 8:30 or 9pm. I swear she just wants to hang out with us. Addy wakes up anywhere between 5-6am for her bottle and then almost always goes back to sleep until 7:30am. Morning naps for her are a little later- about 9:30am. She usually also takes a short nap on the way home from morning therapy. Her afternoon nap is a little later too at about 3pm. Addy usually wakes up frequently while she sleeps but now that she can put her own nuk in, she often settles herself back down. Addy also needs to blankie and nuk to sleep. We usually find her on her stomach in the morning, otherwise on her left side.

Firsts:  A trip to Nickelodean Universe on one of Max's day off. Addy was out of control happy while we were there! It was pretty funny. She laughed at everyone and everything. She looooved it. Swinging- We put a sensory area in the basement for Max and we put the outdoor swings down there for the babies. Addy loves being in the swing- she is still a little small for it, but if we put a stuffed doll in there with her, she's fine. Valentine's Day- really, they had no idea. Addy got a small toy, a little dress and a bath toy she shares with Levi.

Skills/ Milestones: Her sign for "all-done" is her pounding her left pointer finger down. She shakes her hands over her head for all done. Addy is so close to crawling. She gets on her hands and knees. She also scoots backwards and can go from laying down to sitting on her own. Addy looks at books and is getting pretty good at turning the pages by herself. Addy can also feed herself her bottle, but also prefers not too. Addy claps when she is excited for happy.

Words/ Noises: Ma-ma, Da-Da, Ba-Ba, MA-MA!!!, mo-mo (more), Hiiii (she definitely says hi), he-he (yes she actually says he-he when she laughs). Ba-ba (which I think is for her bottle). "inky"- stinky- she even says this with her face all crinkled up.

Life with Addy: Holy moly... Addy is something else. She is so stinkin' adorable. It's impossible not to love her. She loves to be the mix. She loves to get her attention and if she's not getting all that she wants- she'll speak up about it! She started making this little stink face all the time when she is displeased with something. She even started flashing it at her brother's- which is pretty hilarious. Addy loves to play with her toys (and toes) and likes pretty much anything that someone else has. She's pretty quick and can snatch Levi's nuk faster than a blink of an eye. She is definitely a Mama's girl and isn't afraid to let everyone know it. She's pretty dramatic and all girl. Even with her attitude, it's hard to not think she's the cutest thing ever.

And bring on the pics...