Camel Have Water

Max has been in school for about a month now. And according to his teacher and ST (speech therapist), he is doing very well! His language is really taking off and he is regularly putting words together on his own and sometimes they even make sense! Most of what he says is a script from his favorite show The Wonder Pets, or a repetition of lists over and over again. But more things are being added to the list and he is starting using his scripts to ask for what he wants. For example, in the "Save the Camel" episode, the Wonder Pets are helping the camel get to the oasis for a drink of water. So when Max wants water, he says "camel have water." Kinda funny...

When Max started school, his therapists and teacher helped us set goals for him. We picked three goals: Max staying in the same room with us while we try to play with him, Max getting potty trained & Max using his silverware. He is getting better about staying in the room with us while we try and engage him but we still have a long ways to go. Potty training... Ha! Right now the most action the potty chair sees is when Max puts his "friends" (Georgie, Cannon, blankie, Ming-Ming, Tuck & Linny) in the pot and sits on them. He also takes the brush, toothpaste, comb and floss out of Dave's drawer and puts them under the potty chair. Also funny. Realistically, we won't starting trying until this summer but we have started teaching him to take his clothes off. After all, you need to know how to take your pants off before you can use the potty chair.

Our goal for the next couple weeks is getting Max to use his silverware. It's not that Max can't use them- he just won't. He doesn't understand why he would use them when his hands work perfectly fine AND accomplish the goal of shoving as much food into this mouth, as fast as he can, much faster. Max was using both his spoon and fork very well around 15 months, but like a lot of other things, this skill just sort of went away. Whenever we try and push him to use his utensils, he screams. He doesn't just whine. He gets hysterical and hits it away- sending food everywhere. He will eat off a spoon if we feed him but does not like to eat off of a fork. He will take the food off with his fingers and put it into his mouth. This is going to be a painstakingly long process but Max did well with his spoon at school today and did ok with his fork at lunch. We are using a visual aid system to help him and it actually seems to make sense to him!

Baby steps. I am quickly learning that with autism, it's all about the baby steps. It takes a lot of patience and even more persistence. And it all has to be intentional. Most kids starting stripping down as soon as they figure out that clothes can come off. But Max has never, not even once, tried to take off his clothes. Like most guys, he loves being naked but doesn't understand that he can make that happen on his own. That's the difference between other kids and Max. He can't make the Point A to Point B transition on his own. It all has to be learned- or in some instances, re-learned.

It's funny (and not ha ha funny...) but our approach to Max's autism is kind of like how I have to approach life without Ellie. It's all about the baby steps- getting through each day, each hour or each minute, one at a time. And it all has to be intentional. Sometimes it has to be a conscious decision to put my feet on the floor and get out of bed. I have to make the decision to put food in my mouth, chew, swallow and repeat. Sometimes, I even have to be intentional about taking a breath. Like Max, it won't always be this way- at some point it will just become habit again. I just have to learn, or rel-learn how live without my Peanut. And it's not how I want it, but it's how it is.

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January 31, 2010

 Max returning the unwanted oranges to the container :)
Don't worry, we didn't return the oranges to the fridge after they had been touched by grubby toddler hands...

I love that you can see how tiny Ellie was in this picture. She was sleeping in her bouncy seat while the rest of us ate breakfast. And it reminded me of a picture of Max one morning at breakfast when he was about a month old. They look so similar! 

I remember that this was a little bit of an early morning at our house because we were taking the kids to get their pictures taken- which I will share in a couple of days when I don't have any pictures of Ellie. We got through pictures and went to lunch at a Mexican restaurant. Afterwards we went home and spent the rest of the day coaxing children to nap and eat! This was also the day that Ellie had her first bottle. From the beginning, she was a great nurser, but I wanted her to be able to take a bottle too. I finally had enough milk saved up so she could have about one bottle a day. At first, she wasn't too sure about the bottle but once she figured out it had the milk too- she was on board!

 Look at her little hands all folded up! Love it!

 Daddy's turn to try... Dave making fun of Ellie's cross-eyed stares at the bottle :)

"Highlights"

"Highlights" of the past week

• Dave paying what we are assuming and hoping to be the final hospital bill for Ellie's stay. Although, I guess the payment of the bill wasn't as awesome as receiving it on her birthday...
• Edinborough Park excursion: Thinking I would make an effort to be a good mom and do something Max loves, I decided to take him to the indoor park. I thought Thursday would be a good day to go, because the loud, out of control and highly irritating big kids should be in school. Wrong. Seriously, do kids ever go to school anymore? I love having extra days with Max BUT if the point of school is to learn- don't you need to actually be there? I guess it wouldn't have been so bad if Max hadn't been man-handling every kid in his way. It didn't matter if they were bigger, smaller, defenseless or someone's mother- he would just grab right on to the back of their shirt and yank 'em out of his way. So, I was THAT MOM who's kid was picking on everyone else and stealing their scooters. But at least I was paying attention to him instead of sitting on my cellphone or chatting with other equally inattentive mothers about the best place to get their toes done before their Caribbean vacation.
• Taking Max to get his medical diagnosis of autism. As if having to put a label on your child so your stinking insurance company will pay for his therapy wasn't awesome enough, I had to fight with the receptionist when we got there about having an appointment. She was adamant that we didn't have an appointment scheduled but we could come back later in the day- during nap time of course. I told her I wasn't leaving because I know I made an appointment for this date and time so they better fit us in. I guess whoever scheduled us put the wrong name down- our ped. came in wondering why some psycho mother would bring a  6 month old for an autism diagnosis... no 6 month old but definitely a crazy mother. 
• Ellie's three month Angelversary. Some deep, dark and twisted part of my mind seems to know the calender better than the rest of my brain does. Because I think that the three month mark of Ellie's passing isn't anymore painful than any other day, but every time an anniversary arrives, that part of my mind fires up and I'm a wreck. This week was especially bad. It seems that with every day that passes the longing for Ellie grows stronger. And one hand, I can't believe it's already been three months but on the other hand, I can't believe it's ONLY been three months. Three months is a long time to be without your baby.
• My never ending headaches from hell: I've asked Dave to just run my head over with his car. He won't do it. I think it's because he doesn't want to hurt his car. Dave- if you loved me- you'd do it. I have had a headache- a big, bad, want to yank your eyeballs out of your head, throw-up and scream kind of headache- for days. It really needs to go away.
• The MN Zoo: Another failed attempt to take Max out of the house and do something that should be fun. We made it through approx. five animals before we hit nuclear meltdown mode. He did actually look at a few animals, which is a big deal for Max. But getting kicked in the stomach and head-butted at least ten times in the less than hour we were there, definitely constitutes a failure.
• Updating baby books: This activity usually makes me a little sad anyways because I am the mom that gets a little teary eyed every time her kids need the next size diaper or sock. But flipping through Ellie's baby book and knowing that those empty pages were going to remain empty was way harder than expected. It made my heart race and hands shake. The brevity of her time here has never been so painfully obvious.
• Costco: Now, I was really pumped up to go to Costco. It's new and I heard has a really exciting Vita-Blender demonstration. Like Sam's Club, I felt that Costco on a Sat. evening would be an ok bet- most people there are on a serious mission to stock up on way more tortilla chips than their Superbowl guests will ever consume (seriously, why do people buy that many tortilla chips?!) and chicken thighs. They do not have the time to listen to their child plead for a 18 lb box of fruit snacks nor the space for them in their cart so they leave them at home. Everyone keeps saying how incredible Costco is and I felt confident I could enjoy it's wonderfulness. Wrong. Again. Right off the bat: double-seater carts. Like I need an empty child seat in my face to remind me of who is not with us on this visit to buying-in-bulk paradise. Then we made our way to the membership desk, we are almost home free when the picture taker guy starts in about his nine-month old who is doing "that really cute waddle walk." And thanks.
• Medica: I knew they were going to be an issue. They always are. For everyone. After getting transferred four times, being told I shouldn't mention the word "autism" to the customer service reps because it flusters them (flusters them?!), I was finally told that my request for ABA therapy coverage would take 10 days to review. Remarkably, she returned my call the next day. To reject our request. But she would send me the paperwork on the appeal process. And thanks for that. Sounds like I have several really exciting hours of paperwork ahead of me.
• And to top 'er off... I went downstairs to change the laundry and the dinner that had been washed down the upstairs sink and garbage disposal had backed up in the laundry room sink. Mmmm. Let's just say the meatloaf and hash browns didn't look nearly as good as they did at dinnertime.

Here's hoping for a better week...

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January 30th, 2010: The Parade of Grandmas (and Great ones too!)

Max and Ellie are very lucky to have not only two Grandmas living within close proximity but two Great-Grandmas. And all four love(d) spending time with the kids, just as much as the kids love(d) being with them.

In the months before my Ellie was born, my Grandma (Grams) was in the hospital and very sick following some complications for her knee surgery. There were a few times, when we weren't sure Ellie would ever met Grams. Thankfully, Grams got much better and by the time Ellie was born, she was in a rehab facility making her big comeback. Due to her germaphobe mother, Ellie wasn't able to go see Grams at the rehab place until she was just over two weeks old. Even though Grams wasn't really with it yet, you can see how happy she was to met Ellie.

Random humorous story of sick and feverish Grams (sorry Grams): I was hugely pregnant the last time I went to visit Grams at the hospital before I delivered Ellie. She had been having some problems with dry mouth and I had just bought some mouthwash to ease my dry mouth so I brought some to leave with her. She refused to take it, saying I would need it if I ever got pregnant. Hello Grams! You see this massive thing hanging off the front of me? It's not a tumor- it's a baby.

Anyways, I remember how tiny Ellie was the day we went to see Grams. We went out to eat at the Original Pancake House and Ellie just slept in her carseat the whole time. She didn't even notice the idiot waitress that insisted on swinging the piping hot carafe over her every time she passed. By the time we got to the rehab though, she was hysterically screaming and hungry. It was my first attempt at nursing in public. I remember feeling weird about unbuttoning my shirt in the chapel area- but it was really the only place I could feed her. After Ellie puked all over me, she was ready to meet her Grams. Here are a few pictures from that day...

 Four Generations: Ellie, her Mommy, my Mommy (Ma) and her Mommy (Grams)

Later that day... Ellie's other admiring Grandma's came to visit (along with Papa- Dave's dad). While Papa tried his best to get Max to throw up on him...

another one of Ellie's Great-Grandmas, Marian, cuddled her. Marian is Dave's Grandma and was a kind, sweet lady who loved her grandkids and great-grandkids very much. Sadly, Marian suddenly passed away on July 7th. Marian passed peacefully in her sleep.

I didn't understand why she has taken so suddenly without warning, that is, until Elle died. Marian had to go first, so she was there when Ellie got there. Besides Bee, Marian was the only person that Ellie had known from here, when she got there.

I know that Marian is watching over my Peanut until I get there.

 After everyone left, Dave, the kids and I just hung out for the rest of the night. And we were able to get a series of pictures of Ellie making those cute, funny newborn faces.

Ellie was all tuckered out after being loved on by her Grandmas all day...

** Excitement! Found more pictures from 1/29/10: added them to the post from yesterday!

Baby toys and Pictures

Elle Belle~ Tonight I have been busy. The playroom needed to be re-organized. Much like the rest of the house, it fallen into chaos since you left us. So I went through the art supplies, the puzzles and toys. I knew I had to put the baby toys away. Max never touches them, and I had to do it eventually. Every toy that went into that box, took a little piece of me with it. I could just see you sitting in front of the drums & xylophone, pounding away and giving me that goofy grin. I kept thinking about the way you loved to lay on your back, use your feet to pick up the toy and bring it to your hands, which brought it right into your mouth. It was so funny!

After the playroom was straightened out, I started putting pictures on Snapfish so I can update yours and Max's baby books and photo albums. I loved going through the pictures and seeing how much you  changed everyday. But it makes me sad to know that after I add these pictures to your book- that's it. There won't be anymore pictures of my Peanut to be printed. It breaks my heart.

I miss you so much Baby Girl.

Love you forever and ever, Mama

January 29th, 2010

Our Peanut is two weeks old in this picture. From the very beginning, Ellie loved to be held like this, all cuddled up with her head tucked right in by yours. Which was perfect because you could constantly smell that sweet new baby smell. Look how perfect she was. Sigh...


EDIT: Found more pictures in a different folder. Better than Christmas. Here they are...

 Meeting Kaelin for the first time!

 Yep, that's my son smelling his feet...

 Giving sissy a kiss

 Cuddling Ma

Thank Yous

In the past few weeks, I have received some very beautiful things that remind me of our very beautiful girl and I just wanted to share them with everyone.

But first I just want to say, THANK YOU to Franchesca for my very lovely new blog design. I love it! Franchesca is the mother to beautiful little Jenna, who was taken from her much to early. Franchesca is a creative genius. She designs blog for many baby lost moms and has many projects on the side. Check her amazing work out at her website Small Bird Studios and be sure to look at her blog.

Another amazing baby loss mommy named Carley operates a website called To Write Their Names in the Sand in memory of her baby, Christian. Her family makes almost nightly trips to their nearby beach in Australia and writes the names of angel babies in the sand at sunset. She takes a picture and posts it for each child. They are beautiful and mean so much to us to have lost a child.

A very kind man named Matt at WordTraits drew a picture of Ellie for us. I sent him a picture of our girl and words that described her. These words make up the picture, very thoughtful. It's a beautiful tribute to our Peanut! Thank you Matt! Please check out his work!

Finally, Nancy at Seeds of Love made a very special gift we were able to include in Ellie's birthday party favor bags. She printed personalized wildflower seed packets- they were a perfect addition to Ellie's ladybug themed party. I LOVE the idea of our friends and families planting flowers that will bloom in memory of Ellie. I can just picture her smiling up there when the beautiful blooms come up. Out of the kindess of her heart, Nancy also provides seed packets for children's memorial services.

Almost everyday I am surprised by the extreme kindness, compassion and love that exists amid such heartache and sorrow.
Thank you to you, those I have never even met, that have shown us such kindess. Your acts of selflessness are so appreciated and treasured, especially in hard times. It makes my heart happy to know that Ellie was remembered and thought of. Thank you.

Yep.

A fellow BLM blogger posted this today. All I can say is YEP. This is exactly the point I was trying to make yesterday. It brought tears to my eyes when I read this today because it was so right on.

Thank you for sharing this Tiffany... Please go visit Tiffany at her blog here and here to see how she is honoring the life of her beautiful little boy Julius.

 

The Bereaved Mother

To those of you who look away when I grow teary eyed in the baby department, look a little deeper. Surely you have some compassion in your heart.

To those of you who change the subject when I speak my child's name, change your way of thinking. It may just change your whole life.

To those of you who roll your eyes and say we barely had them at all, how could we miss them so much, in our hearts we have seen them live a thousand times. We have seen their first steps, first day of school, their weddings, and their children. We have had them forever in our minds.

To those who say we can have another, even if we had twenty more they would never be the child we lost, and we will always miss them.

To those who say get on with my life, I have. It is a different life, the life of a grieving mother. One with a tremendous amount to be thankful for, but also one with a lot to mourn the loss of.

Do not judge a bereaved mother. She comes in many forms. She is breathing, but she is dying. She may look young, but inside she has become ancient. She smiles, but her heart throbs.

She walks, she talks, she cooks, she cleans, she works, she IS, but she is NOT, all at once. She is here, but part of her is elsewhere for eternity.

Do not dismiss us: we have shaped more than just the future generation. We have released all the tiny angels who are watching over you.

Open your eyes to us, and you just might see them.

~ Author Unknown

 

This picture of Ellie was taken two days before she got sick, three days before she died. We were at the mall with my mom. Did she pick up that bug here?
She was SO proud sitting in the car, she loved doing the big kid stuff! This is one of the only pictures we have where she is wearing a barrette in her hair. It was the only way to control it- without it, her hair just stood straight up. I loved that her hair was long enough for a barrette. This is the ONLY picture we have where you can see her two teeth. It kills me to look at this picture and see how healthy and alive she was and to know how she would look two days later.

Pretty Girl~ I want more than anything to reach into this picture and grab you and never let you go. I know I told a hundred times a day, but you are beautiful. I miss you Peanut. Love you, Mama

 

pink tutu+naked baby= crying baby

Remembering January 26th, 2010

As soon as we got confirmation that our Turtle was a girl, I went home and started doing some online shopping. And on etsy.com I found pink tutus. A lot of pink tutus and matching headbands. Done. Bought instantly. So cute. I couldn't wait to put in her it and take a million obnoxious pictures.

So that's what I did... I definitely got more enjoyment out of it than she did. I tried to convince her we needed to get an adorable picture for her birth announcements. She didn't buy it...



"Aaah! Much better Mommy!"
Have I mentioned I love that fuzzy head?



a weary land

"I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That You would take my pain away
That You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crookedly lie
Oh Lord, before these feet of mine
Oh Lord, before these feet of mine"

- Your Hands by J.J. Heller

When I set up this blog, it was to connect with other parents of autistic children. I never in a million years thought it would be such an important source of support to me for a much different reason. Through this blog I have "met" many other mother's that are struggling to live without their children. Many of them are at about the same place I am. About three months into this never ending journey. And though we all have very different stories and are all very different people, mothers, it seems that grief has a very distinct pattern.

Or maybe it's the pattern that everyone else wants us to have. I haven't really figured that out yet.
We all appear to be functioning. Getting dressed, working, taking care of other children, cooking, cleaning, yadda, yadda, yadda... But we are hurting. We are not "better." In fact, the pain seems to be taking on a whole new life. Maybe it's because the numbness and shock is starting to wear off a little and reality is starting to set in. Maybe it's because the mass of supporters is starting to thin out. I haven't really figured that out either.
And we all seem to be struggling with other's expectations of our grief.

I guess my point is- no one is an expert. You can't be an expert if you've never lost a child. You can't be an expert if you have lost a child, you're still on the journey. You can't be an expert if you have lost a child and then lose another one. Because now your loss is compounded by another loss. Like I said, each child is different, each circumstance is different, each mother is different.

But losing a child, is losing a child. A mother NEVER gets over losing their child. It doesn't matter if your child's death was known well ahead of time or sudden. It doesn't matter if you got nine months or nine years with your child. It doesn't matter if your baby was born sleeping. Your child is your child. Just because our child is not here, doesn't mean that we are any less their mothers. Just because our children have been gone for a certain amount of time doesn't mean that we are "better."

So please, don't assume our showered, groomed appearances or clean houses, folded laundry or cooked dinners imply in any way that we are over our baby. We are just getting better at faking it.

But don't be surprised or judgemental when we have days when we just can't fake it anymore. It takes a lot of energy to pretend and sometimes, we need a day to sit on the couch in our pajamas with our uncombed hair and sob. Don't assume showers, or snacks, or walks, or getting out of the house will make us feel better. Because unless you can bring our baby back to us, you can't make us feel better. Sometimes we need to let it out and be sad, or mad, or whatever.

We are all just "trying to understand how to walk this weary land."

3 months...

Today is a bad day. A stay in your pajamas and not one, but two bathrobes because you are shaking cold, kind of day. A hysterically, uncontrollably sobbing, puffy eyes, half a box of kleenex sort of day. A nothing is going to make me feel better sort of day so don't suggest anything because it will just make me more upset sort of day.

Today marks Ellie's three month Angelversary. Three months ago, we had to make the decision to let Ellie's body rest. I can't believe it.

Three months. That's a quarter of a year. A quarter of a year with our little girl.
Three months. That's a third of Ellie's life.
Three months and I still can't believe that we are that family. The family that experiences the unexpected tragic loss of a perfectly beautiful and "healthy" baby.
Three months and the hurt seems to be getting worse- not better.

Today I can't decide if looking at her pictures from a year ago makes me more sad or not. I almost feel bad for that mother in the pictures. That mother that doesn't realize the itty bitty baby in the picture with her will be gone this time next year. But then again, that mother was so happy it would have been a shame for her to know. I suppose it's better that that mother didn't know what was coming, she enjoyed every second with her little girl, never worrying about losing her.

January 25, 2010

When Max was born our nephew Evan was two and obsessed with Max's umbilical cord. He called it a cracker! Evan always like to watch us change Max's diaper and the first time he saw us change it after the umbilical cord fell off, he was upset! He cried, "HAPPEN CRACKER?!" So we have since referred to the umbilical cord stump as a "cracker."
Early this morning Ellie's cracker fell off so I was able to put Ellie in the bathtub for her first soak at home. Since she was still so floppy and I was still rather sore, I decided it would be easier to give her a bath on the floor in her room instead of trying to cram myself in the microscopic space next to the bathtub.

She was NOT thrilled to be woken up...

But was pretty happy once she was naked!

Look at those long arms! I remember how slippery she was and she always had very stretchy skin- almost like a puppy's head so she was very hard to hold onto!

Max reading his stories in Ellie's crib while his sister gets a bath. He hasn't really figured out that this is Ellie's crib yet!

All clean! Time to wash the hair! I remember our "stellar" nursing assistant at the hospital telling us not to get shampoo in her eyes so I made sure to avoid that! She loved having her hair washed and getting her head rubbed! Max decided it was time to help...

I loved how cute and cuddley Elle was right after a bath. I always called her a little bug when she was all wrapped up... I miss my little bath bug.

Peanut~ I want you back. I want our normal life back. I'm so sorry we had to let you go, your body was too tired and we didn't want you to suffer anymore. I would switched places with you in a second if I could. I miss you everyday, every second. I love you so much baby girl, Mama