Maybe some day, I'll get it together enough to blog again! For now, these three keep me VERY busy!

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.