About Cassandra Anne

Happy Birthday Cassie!

2008-08-17T18:25:00.003-04:00

Today ~~would~~ should have been Cassandra's 5th birthday. No doubt she'd be so big, with beautiful hair, chatting up a storm, and generally being the wonderful little kid she always was.

I had to speak in church today and several times I found myself getting so choked up that I knew I wasn't going to be able to. Each time however I took a deep breath and a calming feeling came to me and I was able to do just fine. I like to think Cassie was there with me, putting her hand on my shoulder (or kneecap as the case may be) to let me know everything would be all right.

It's been too long since I was able to hold my little girl, to cradle her in my arms, and tell her how much her daddy loves her.

Happy birthday, Cassie. I love you.

Charles Amos Akers I 1908-2008

2008-02-08T10:43:00.000-05:00

I just got an email from my Pop that his dad, my grandfather passed away last night. He was staying with my aunt in Illinois where he'd been battling heart issues.

I'm pretty broken up about it, mostly for my dad who lost his last parent yesterday - Grandma Akers passed a few years ago. I can't say I know exactly how he feels, but I've kind of got an idea, and I know if I could he'd like a big giant hug right now.

Grandpa Akers was really sweet. I remember when I lived in Martinsville we'd drive up to see Grandma and Grandpa in Parkersburg, West Virginia where he lived my entire life. My dad was named after him, Charles Akers II, and there were a lot of Charlies in the extended family - I remember all the plates Grandma hung on the wall with names and birth dates. They had these big recliners which were enormous to a 4 year old. Grandpa would sit in that chair and I'd sit in his lap and he'd do card tricks for me. I was mesmerized as he'd tap the deck and pull my card out every time. Later I'd take the deck of cards and hide behind the big chair and try to figure it out. I never could.

Grandpa never got to meet his great-granddaughters Lesley and Cassie, but I'm sure he's got Cassie on his knee right now showing her that same card trick.

I know she'll love it as much as I did.

An Update?!?

2008-01-31T14:23:00.000-05:00

Yes, an update!

It's been a long long time since I've posted, and I'm sorry about that.

I just haven't had too much to say that hasn't already been said. I hesitate to say things have gotten better, but it is certainly different than it was a year or so ago.

I don't miss Cassie any less - if anything I find myself thinking about her more when I can - but the "heavy sadness" isn't there. I'm able to talk to people about her without getting overly emotional, I look for opportunities to bring her up in conversation, I remind myself what a beautiful, super girl she was.

Daria and I stopped going to our support group a while ago because it got to be too much for us. It was difficult to hear the stories of the recent losses and see the people going through what we had been through. I think being able to attend and contribute and tell my story was immensely helpful, but the "heavy sadness" was there and it was too much. I know we'll go back one day. Our grief transitioned us into a place where we weren't getting much from the group. I'm sure it will transform us back to where we can go and help parents the same way we were helped. I look forward to that.

Strangely, this is the first time I have ever posted a blog entry and not gotten emotional and cried. I don't know whether that is a good thing or a sad thing. I find myself comforted when I'm moved to tears thinking about Cassandra. A close friend says its when "your grief becomes a comforting reminder" how much you loved your kid, and he's right.

I look forward to the next time I have to cry.

Happy Birthday Cassie

2006-08-17T17:17:00.000-04:00

Today ~~would~~ should have been Cassandra's 3rd birthday. Unlike last year, when we planned a trip to Hershey Park in Pennsylvania and had an absolutely magical time, this year life got a little busy and in the way. We had a doctor's appointment for Lesley at Children's National Medical Center in Washington DC - a very familiar place for Cassie and Daria. While I was there I gave blood (Daria's wonderful idea) in Cassandra's memory. As you know, giving blood is very meaningful to us, since Cassie needed a blood transfusion while she was in the hospital. I was an emotional wreck throughout the whole process - so much so that Daria had to assure the nurses that I wasn't having a breakdown and I would be okay. The appointment went well, and afterward we went to a baseball game with Aunt Cindy and cousin Caleb. We had lots of fun - even though no rabbits ran across the field. When we got home from the game, we decided to take a trip to the Burke Lake Train where we took the girls for Cassie's only birthday.

Of course, we were on the lookout for bunnies, and on this special day Cassandra didn't disappoint us. She never does. On the way out from the train station, as we cross the bridge into the big field where the bunnies like to play, we saw a bunny.

And another.

And another.

On her 3rd birthday, Cassie sent us 3 bunnies.

Happy Birthday, sweet beautiful girl.

A Bittersweet Father's Day

2006-06-18T18:04:00.000-04:00

I don't remember if I was abe to post last year, but Father's Day is a very happy, and a very hard day for me now. Of course, I will always be Cassandra's dad, and she will always be my beautiful precious daughter, but it's heartbreaking not to be able to hold her and kiss her on this day. I hope I was able to be a good father to her - I tried my hardest for sure. But I do know unquestionably that I loved her as much as I possibly could, and she knew every day of her life that her daddy loved her. And I still do. And always will.

My Sweet Cassandra

2006-04-06T10:21:00.000-04:00

The Worst Day

2006-04-05T14:03:00.000-04:00

Tomorrow will be one full year since Cassandra died. I'm going too be to emotional and too broken up tomorrow to post anything, so I'm going to do it now.

It doesn't seem like a year. Memories of Cassie, her touch, her smell, her giggle, are too close in my mind. The horror of the surgery, the hospital stay, and her death are right on the edge of my conciousness. Every day since then has taken me one day further away from when I held her last, and one day further along this awful, lonely journey as I try to cope with living life without my daughter.

I know I will never forget her, and maybe one day this won't hurt so much, but I type this with a picture of Cassie on her birthday as my laptop wallpaper and I can't help but want to reach into that picture and touch her soft cheek, tickle her chin, and tell her that I love her so.

Daria and I are going to spend the day together at home tomorrow working in our front yard planting a memorial garden for Cassandra. Hopefully it will keep our minds and bodies occupied while we do something to honor Cassie's memory.

Please keep Daria, Lesley, me, and most of all Cassandra Anne in your thoughts tomorrow.

The Worst Week

2006-03-29T12:29:00.000-05:00

It was one year ago today that we took Cassandra to the hospital for the surgery that would ultimately lead to her death. We had been following the surgeon's orders not to give Cassandra any nutrition since shortly after midnight, and she wouldn't get any more until after her surgery. Due to unforseen circumstances, Cassie's surgery was delayed and the long long time and the lack of nutrition and drop in blood sugar caused the brain injury that killed her.

I have looked back to this day many times over the last year and part of what makes me sad is that, if we had it to do all over again, I think we would have. We trusted the surgeon and the feeding orders. We trusted the surgical team to watch Cassandra carefully. There was no reason not to. Why they let her blood sugar get so low, why they let Cassandra go so long without eating, why they scheduled surgery on an 19 month-old tube-fed child so late in the afternoon, we'll probably never know. I just know, with the information I knew back then, there wasn't much if anything I would have done differently.

So begins the first anniversary of the worst week of my life. I try very very hard not to think about that week, the doctors, the hospital, how Cassie looked, how I felt. It's just too painful and not at all theraputic. I'm sure I'll think about it a lot this week, though.

I'll just have to think about the good times with Cassie Boo more.

Merry Christmas Cassandra

2005-12-25T19:08:00.000-05:00

We Miss You.

I know it's been too long

2005-11-30T14:08:00.000-05:00

I know it's been a long time since my last post. Things have gotten busier, work has gotten more hectic, and there hasn't been much time to sit and reflect and write about it. The results from the autopsy were anti-climactic, we didn't learn much more than we already knew, and I'll write about it another time.

However, I'm going to have surgery to have my tonsils removed this coming Monday the 5th of December and I'm scared to death of going under anesthesia. I know everthing is supposed to be routine and nothing bad is supposed to happen, but we know how that turns out sometimes.

I hope I get to see Cassie when I'm asleep.

The Day We've Dreaded

2005-10-11T10:21:00.000-04:00

Today is the day that we finally learn why Cassandra died. We meet with the doctors from the hospital to learn the results of Cassie's autopsy which took over 6 months to complete. We've been pretty upset that it has taken so long, but at the same time it something I'm not sure were ready for. No matter what we hear today, nothing is going to bring Cassandra back to us. Beyond that, the questions seem kind of insignificant. Was this a mistake? Could it have been prevented? Was there nothing anyone could have done? Why did this happen?

However, if we find out that Cassie's death could have been prevented, then I will be taking on a new role in my life, and that is to make sure this never happens to another kid ever again. No one should take their child into the hospital for routine surgery and leave with only tears and grief.

I know that answers aren't going to make our lives much easier or much better, but at least there won't be so many questions anymore.

6 Months Ago

2005-10-06T10:33:00.000-04:00

Cassandra Anne died 6 months ago today.

Thank You to everyone who called us or wrote to us. It means eveything to know that you're thinking about us.

The First Day of School

2005-09-08T15:05:00.000-04:00

Today is the first day of school for pre-school in Fairfax, and Lesley is going back as happy as can be. Oh how she loves going to school and seeing her teachers and her friends. This was also supposed to be Cassandra's first day of school, too. We would have had her evaluated this past summer to determine what services she needed and likely would have been going to school today with Lesley. Of course, as well as Cassie was doing before her surgery, she may very well have tested well enough to not require pre-school, but we think she ~~would~~ should have been riding the bus today with her big sister and best friend.

5 Months - Accountability

2005-09-06T14:48:00.000-04:00

Cassandra passed away 5 months ago today and we still don't have any answers. The doctors haven't finished their reports, the autopsy isn't complete, and our beautiful little girl is still gone. I don't know at all if finally understanding how Cassie died is going to be of any relief. The concept of "closure" is, of course, ridiculous. I think the worst part of the medical aspect is the proposition that no one will be held accountable. I want someone held accountable. That's very different from saying I want someone to pay for what they did - and I want someone to pay big time - but someone needs to be held accountable.

When Cassandra had her spinal surgery, the nurses at Childrens National Medical Center in Washington DC didn't do their jobs and didn't monitor Cassie's urine output and she went over 36 hours without being able to empty her bladder. I'll tell the whole sotry another time, but to summarize Cassie lost the use of her bladder and from that day forward we had to catheder Cassie every few hours to empty her bladder. We rose a big stink with CNMC and they were pretty responsive. The details of her case were reveiwed and they decided to amend their procedures to make sure all infants were to have special catheder procedures going forward to insure that they were producing urine post surgery. That's accountability - make sure it doens't happen to another kid.

I hope, at the very least, whatever went wrong in the hospital 5 months ago is identified, the right people are educated, and whatever happened to Cassandra doesn't happen again to someone else's beautiful little kid.

A Reality Check

2005-09-01T20:40:00.000-04:00

I just wanted to post a quick note to let everyone who reads know that Daria, Lesley and I are hanging in there. I've received a lot of feedback, which I truely appreciate, but some of it concerns me and I wanted to address that.

Please don't think that - because most of my posts are sad and downright depressing - our family is constanly crying or are totally consumed with sadness and grief. Some days we do quite well. However the reason I started this blog was to help me work through my grief and express it in a fashion that is going to help me deal with it in a more and more positive manner. Therefore, I'm not going to post stuff like "Today was okay, work was fun, and we took Lesley to the train which was nice" or "OMG, the Cubs really stink!". This blog is about dealing with the grief, so the posts are going to reflect that. I hope that you've noticed that I'm posting less frequently now. Please take that as a sign that I'm starting to heal and the bad days - while they still come often - aren't as frequent as they used to be.

I really do thank all of you who have read my blog and have taken the time to drop me a note or give me a call to check in. I ask that you please continue to do so - we always love to hear from our friends.

And Oh My God! The Cubs really do stink.

Birthday Remembrance

2005-08-26T15:02:00.000-04:00

We spent Cassandra's birthday at Hershy Park in Pennsylvania. Daria and I had been very scared about what that day would bring, but we decided that we should be out having fun and doing something the Cassandra would have loved to do. Daria picked out Hershey Park since it is a very kid friendly park, with many mnay rides for small children. The day was absolutely gorgeous, not a cloud in the sky - It was warm, not hot, and breezy. This was Lesley's first trip to an amusement park and Grandad came along to celebrate Cassandra as well. Lesley loved the rides, even the ones she had to ride by herself. We were happy to discover that Lesley is just a shade over 36 inches tall in her shoes, so she was able to ride more rides than we had aniticipated. For the record, Lesley is a "Hershey's Kiss", one step above a "Hershey Miniature". Lesley probably liked the Log Flume the best. Even though she was scared at first, once the log started rocking and rolling she got very excited, and when we went over the last hill for the big splash, she screamed in delightt and begged for more - we went on it 3 times.

All throughout the day I kept telling Cassandra "Happy Birthday" and even though she wasn't there next to us to share it, I think she would have been proud of us for having fun and remembering her in a happy way. We never got to take Cassie on a log flume or a roller coaster, but Lesley got to enjoy it that day for her little sister. I'm sure Lesley would have rather shared the rides, too.

We rode the train a few times, too. It wound through the busy park and it was a nice way to relax for a while. On our last train ride of the day, just before the last turn, a bunny rabbit hopped by out of some small bushes. In the middle of this busy park, a little bunny stopped by to say hello. And we all paused and looked at each other and thought of our little bunny and knew we did the right thing.

Love's Labour's Lost

2005-08-17T15:39:00.000-04:00

Today ~~would~~ should have been Cassandra Anne Akers' 2nd birthday. I can't even begin to explain how unbearably sad I've been these past 4 months, thinking about how she was taken away from us, missing her so very very much.

Cassie came into this world a little early and very quickly. Daria's labor started early Sunday morning and by the time we got to Lesley's swim class they were in full effect. Good thing Daria sat this class out to videotape it. After class was over we went home and made the necessary phone calls, first to Kathy our Doula and then our parents. Daria's dad was under strict orders to stay close to home as we approached the due date, but he was off camping so we couldn't reach him. My mom was home but in Richmond, so we also called Daria's boss who was kind enough to come over. While we waited for the troops to arrive, Daria's labor slowed way down. Kathy told us that it was a function of Daria keeping an eye on Lesley and being responsible for other things, and that once we left for the hospital her labor would pick up. It did.

We labored in the shower for a while (well, Daria labored and I held) and then moved to towards the bed when transition kicked in. I held onto Daria as she leaned over me holding my shoulders through some contractions and her water broke all over my legs and socks. Daria climed into the bed and before anyone was ready for it, Cassie started to be born. The doctor wasn't paying attention and didn't even have gloves on when Cassie's head started to poke out. Kathy said "I see her head" but the doctor didn't believe her. Kathy told the doctor "I'm catching this baby if you aren't" and the doctor spun around just in time to catch Cassandra in her apron.

Oh my god what a beautiful baby Cassie was. So teeny tiny with the biggest brightest blue eyes. The nurse asked us what her name was and I proudly got to say:

"Cassandra Anne Akers"

I was a father again and couldn't have been happier.

A Celebration of Sorts

2005-08-16T15:30:00.000-04:00

Tomorrow is Cassandra's birthday and we decided to do our best to celebrate Cassandra's memory by doing something she would have loved to do, so we're going to Hershey Park in Pennsylvania. Daria, Lesley, Grandad, and I will leave tonight and spend the morning and afternoon at the park playing, riding the rides, having fun, and remembering our beautiful little girl. I think Cassandra would have loved to go to an amusement park, and I'm sure she'd be very happy knowing that we're going to have fun on her birthday. The day won't be without a lot of tears, I'm sure, but we will be having fun together as a family (what's left of it) and celebrating Cassie's life. I think that would have made Cassandra proud.

Labor and Delivery

2005-08-15T21:50:00.000-04:00

Yesterday was roughly 2 years after Cassie was born. It was on a Sunday morning during a swim class for Lesley that Daria really started to feel contractions. We called Kathy our Doula when we got home, called our parents to come on up, and headed for the hospital. Just a few hours later Cassandra was born to two very proud parents. We had no idea that we'd be back in the hospital a few days later, and then back many more times again. It was so hard taking care of Cassandra with all of her medical problems, so much more labor. But it was a labor of love.

Beautiful Girl

2005-08-10T23:59:00.000-04:00

I've heard from a bunch of people over the last few days that have read the blog and seen pictures of Cassandra about how beautiful Cassie was. They're right. She was beautiful. Absolutely positively beautiful.

She would have been even more beautiful today.

Short Daydreams and Wishes

2005-08-09T20:45:00.000-04:00

Every once in awhile I'll find myself daydreaming or flat-out drifting off to sleep becasue I'm so tired. Sometimes I'll have a brief flashback to some point in time just prior to Cassie's surgery. Either at home taking pictures of her before we get in the car, waiting in the waiting room before we're called back to pre-op, or waiting in the pre-op room holding Cassie as she keeps falling asleep.

When I do have these flashbacks, I have a tiny, split-second, miniscule feeling of hope that I can somehow do or say something to avoid the turn of events that led to Cassie's death. I think: I can ask the doctors to pay close attention to her oxygen. I should tell them to watch Cassie's blood sugar since she hadn't eaten in so long. Maybe I should just say forget the whole thing since she's not acting right.

The hope then goes away very quickly. Too quickly.

There is no more hope.

4 Months

2005-08-06T19:03:00.000-04:00

Cassandra died 4 months ago today.

As I'm sure you're wondering, the answer is a resounding NO, things aren't any easier or any better. Parents who have gone through the loss of a child assure me that it will get less bad someday. However, I keep thinking that no matter what happens and no matter how severely all of our lives take a turn for the better, it doesn't matter. We could win the lottery, the Cubs win the World Series, Lesley's CP could disappear, Bush get impeached and thrown in jail, discover the cure for cancer, and none of it would matter quite as much because Cassie isn't here to share it with us anymore. It's always going to suck. I'm pissed off and I'm sad and I know I always will be.

It's Coming

2005-08-04T20:13:00.000-04:00

It's looming out there like a giant. Cassandra's 2nd birthday is on the 17th, less than 2 weeks away and we're all scared witless. I have no idea how it's going to hit me, how I'm going to react, or how I'll get through the day. I just know it ain't gonna be easy on any of us. And, of course, there is no manual to tell you what you should do on your child's birthday after they're dead. We're fortunate to have a very strong community of friends that have been through similar situations in The Compassionate Friends and we've gotten some very very good advice. I'll talk about our specific plans later, but suffice it to say - and I should probably rename my blog this - nothing will be as good without Cassandra. I'm kind of afraid that it's going to be anti-climactic, because I really can't miss her any more or want her back any more than I do right now or I have everyday. I think the best we can do is celebrate the day, have some fun, and remember what a super little kid she was. Cassie certainly deserves a fun day. Cassie deserves a lot of fun days.

Oh God, How I Miss Her

2005-07-28T14:36:00.000-04:00

I'm able to work from home several days a week now and it is pretty nice. It's convenient, quiet, and I can walk around in my underwear, too. However, being alone at home I find myself really really missing Cassandra. I don't think she would still be at home if she were sill alive - she was doing so well after we we changed her formula, I think she would have been able to go to school and day care - but I think about being here working and taking care of Cassie, too, and I think it would have been neat. There isn't anything that I do now where I don't think it would be a little better with Cassie here. We go to the train, out to eat, shopping, and Cassie always made it more fun. I never got to take her to a baseball game either and that really sucks - a right of passage for a father that I'll never get back. But most of all, I miss snuggling up for naps with her. Cassie was a super napper and we could fall asleep anywhere together. As long as she had a warm arm around her and a soft shoulder on which to rest her head, she was in heaven.

And when I was holding her, so was I.

Sorry I Haven't Written

2005-07-24T22:14:00.000-04:00

Everything I start to write seems like something I've already said before, but I guess that's better than nothing. Little has changed in this past week and a half. We did get word that the medical reports on Cassandra's surgery and hospitalization have been completed and they pretty much don't tell us anything new, they just raise more questions. We probably won't have a complete picture until the autopsy is complete. Your child's autopsy is a subject that should NEVER have to come up, so it hurts just to type it. In the meantime Daria, Lesley and I have been to the Burke Lake train a few times and we went to a baseball game today - every step of the way thinking how much nicer it would be if Cassie was here to share it with.

Finally, if you're reading my blog and you like it or something I've written touches you, please leave a comment. You can do that by clicking the "# comments" link under each post.

23 months

2005-07-18T14:46:00.000-04:00

Cassandra should have been 23 months old yesterday. Would she have been walking by now? What would her hair look like now? Dark brown? A little wavy? Would she be eating yet? Would she still be sleeping between Daria and I? In her crib? In her own room? Would she be talking? How nice would it sound to hear her say "Mommy" or "Daddy"?

Some Please Do's and Dont's

2005-07-16T18:56:00.000-04:00

Please DO:

Ask me how I'm doing.
Tell me I look good or not so good.
Ask me about Cassandra.
Assume that I'm still having a hard time.
Ask how Lesley and Daria are holding up.
Tell me about your kids.
Call me once in a while to check up on me.

Please DON'T:

Ignore me.
Avoid talking about Cassandra.
Assume that everything is ok now.
Pretend nothing ever happened.
Think I don't need your freindship and support.
Think I can do this on my own.
Tell me "Cassandra is better off / in a better place." - She isn't.

The G-Tube - Part III

2005-07-13T20:17:00.000-04:00

As a result of her G-Tube, Cassie had a very specific bedtime routine which seems like a lot of work, but again it was all just another part of our lives and a part of Cassandra that we loved and cherished. The routine when I had Cassie went like this:

First, I would prepare her last meal for the night, one bottle of formula, about 80cc. I'd grab her tube, a syringe, the bottle, and any medications she needed. Once upstairs we would play on the bed with Lesley and Mom for a while. Lesley got thrown around a bunch - we had to take it easy with Cassie but she loved to be tickled and rolled around.

Then Mom would take Lesley to her room and I'd get Cassie ready for bed. Take off her clothes, change her diaper, clean up her g-tube site, and put on her pajamas. Now it's time to eat!

I'd sit in bed and Cassie would sit between my legs both of us facing the TV. I would hook Cassie up to her tube and the big syringe and feed her the formula over a period of about 20 minutes. While she ate Cassie would play with a small syringe or a small toy, I'd tickle her and kiss her head, or she'd look up at me and grin a silly grin. When dinner ws over, the feeding supplies went on the nightstand, the lights went off, and it was time for bed.

This was my favorite part and probably what I miss the very most. I'd lay down in bed and Cassie would curl up next to me on my right arm. She would snuggle her head onto my shoulder and wrap her arms around my belly. It was so very comfortable. She'd wiggle around a little bit but soon she would be sound asleep in my arms. On bad days she would have a hard time getting to sleep or staying asleep and I'd be up there for hours. Other days I'd be able to roll her over onto her side and go downstairs after a few minutes. It was only very recently that Cassie was well enough that we could put her in her crib to fall asleep, but in retrospect that wasn't nearly as much fun. So I guess there was one good thing about that g-tube.

The G-Tube Part II

2005-07-12T16:19:00.000-04:00

I say the Nissen didn't work because Cassie continued to throw up. A lot. In fact some days were so bad all she did was eat, throw up, then pass out. It makes me angry thinking about it because in my opinion she was much better off before the surgery. We could have been more vigilant had we not gotten the surgery and been very careful when she appeared to be getting pneumonia. At least in that case she still would have been getting breast fed as well as eating more solid foods, and she wouldn't have been forced to "eat" that awful baby formula and throw up all the time. It was so bad that she developed a hiatal hernia from throwing up and retching so much. Finally, no study has ever shown that aspirating breast milk causes lung problems or pneumonia. Had we had it to do it all over again, I would stronlgy lean toward not getting it done.

Still, the g-tube was as a part of Cassandra as her big beautiful eyes or her silly smile. We quickly became experts at getting her ready for feeding. Cassie's day care teachers at Mulberry even learned how to feed Cassie through the tube. Bringing her feeding supplies and hooking her up in a restaurant, in the car, wherever just became part of our routine. It wasn't a hassle, a pain, it was Cassie.

The G Tube - Part I

2005-07-12T08:58:00.000-04:00

Cassandra needed a feeding tube or "G-Tube" (short for gastronomy) in order to get her nutrition. Cassie made several trips to the hospital the first year of her life because she had bad reflux and she was aspirating her food into her lungs. Cassie was a wonderful breast feeder and she even took to solid foods extremely well, however her reflux and aspiration kept making her sick - an infection would develop in her lungs and she'd get pneumonia. In April of 2004 Cassie was in the hospital for 25 days recovering from aspiration pneumonia and at that time the doctors told us the best course of treatment would be surgery.

Cassie would have to have a Nissen Fundoplication and a G-Tube. The Nissen was supposed to tighten the connection between her stomach and esophogus to prevent the reflux, and the g-tube was how we got the food into Cassie since she she wasn't supposed to eat by mouth anymore. Getting the G-Tube was very sad for us since Cassie was breastfeeding so very well and she had taken such a liking to solid foods. However, we needed to do this so Cassie could stay healthy and continue to grow.

We would simply mix up some baby formula or breast milk and pour in down the tube. It wasn't anything like eating had been for Cassie - she'd just sit there and Mom or Dad would hold her in our laps, g-tube in one hand, food in the other and slowly pour the food in.

Unfortunately, the Nissen didn't work as it was supposed to.

In My Arms

2005-07-08T07:49:00.000-04:00

I think thats where I miss Cassandra the most - in my arms. We held Cassandra almost constantly. She was really sick for a long time and just didn't feel comfortable or safe unless she was being held. I don't think I or Daria felt truly safe either with out her arms wrapped around our neck or curled up on our chest. Sometimes I think I can still feel her - in my left arm as I'm carrying her around, careful not to tweak her g-tube site or "button"; curled up on my right shoulder as we both settled down for a nap. I feel her warmth, her soft skin, her little fingers on my neck, her little feet kicking me to get more confortable.

For the first time since she passed, I had a short little dream this morning about Cassandra. I was holding her in my right arm as I walked around, meeting all of the people I have known throughout my life. I was introducing them to Cassandra and telling them what a huge part of my life she was. Friends from high school, college, past jobs. Everyone was so happy to see her and so sad to learn she had died. And then, the dream was gone. I tried very hard to get it back, to force myself back to sleep so I could feel Cassie's weight against me again, but I couldn't.

I still have a little bit of that dream in my head now and I so desperately don't want it to go away. I'm going to go lay on the couch and try to hold her again.

3 Months

2005-07-06T15:10:00.000-04:00

Cassandra died 3 months ago today.

No, time does not heal all wounds.
Yes, you can physically feel your heart ache.
No, there isn't anything I wouldn't do for one more minute with her.

Lesley Understands

2005-07-05T20:11:00.000-04:00

It was the moment we always knew was coming with Lesley but hoped it never did. We were putting Lesley to bed last night when she rolled over and told us,

"I want Cassie, please".

You could almost hear our hearts breaking again. Over and over she would say, "I want Cassie, please," "Where's Cassie?" and "Where'd Cassie Go?" Daria and I have always been up front with Lesley, never talking down to her and never using euphamisms for death. We've always told Lesley that Cassandra died, that she's not coming back, and none of it was in any way Lesley's fault. But tonight Lesley wouldn't let us off the hook that easily. We explained again and again what had happened, but it wasn't enough. What was so painful this time wasn't her questions so much as it was the anguish in her voice. Lesley wanted to know where her best friend was and she wasn't going to stop asking until she knew. In her own way Lesley was able to sum up all of our feelings in that most beautiful, straightforward way that kids do.

"I want Cassie, please."

Songs

2005-07-04T12:39:00.000-04:00

We went to a 4th of July parade today and on the way we heard a song on the radio that I used to sing to Cassie while trying to get her to go to sleep. It was "Malcom McGillikitty" by Ralph's World and it has this great line in it which always felt comforting to me:

"But when I get scared in the middle of the night, he sneaks through the house and he lies by my side."

It made me cry, thinking of holding Cassie and singing it softly to her as she fell asleep, and of course I just bawl like a baby whenever I hear it or any other song I used to sing to Cassie. It sucks too, because those are the songs that I can actually sing well - I know all the words, I can sing it in tune, etc.
These are some of the other sings that I sang to Cassie - and Lesley - when I was trying to get them to sleep:

Yellow Submarie, The Beatles
Till There Was You, The Beatles
Fly Me To The Moon, Frank Sinatra
At the Bottom of the Sea, Ralph's World
Malcom McGillikitty, Ralph's World
Little Raindrop, Justion Roberts
Take Me Out to the Ballgame, Harry Caray :)

Sisters

2005-07-02T16:26:00.000-04:00

For the first time today, I truly saw how upset Lesley is from losing her sister. Lesley is only 3 1/2, so it's difficult to tell how much she knows, how she feels, or just exactly what is going on inside her. Frequently Lesley will say "Cassie" but we're not sure what she means. Daria carries many pictures of Cassie and the rest of the family in her purse, so usually Lesley just wants a picture. We try to talk to Lesley about Cassandra, but she doesn't really want to talk. Maybe she juts doesn't know what to say. Today in the car Lesley was again asking for "Cassie". Daria took out the pictures and gave them to Lesley one at a time, but Lesley kept getting frstrated. "Cassie! Cassie!" she yelled. We had given Lesley all of the pictures we had, but she was getting more and more upset. I realized then that Lesley wasn't satisified with just a picture - she wanted her sister back. Lesley got very very upset and began to cry. So did we.

It Seems to Work

2005-06-30T19:56:00.000-04:00

I think putting my thoughts down on "paper" (as it were) have really opened up the emotional floodgates. It was a tought night and morning for me today - a million thoughts and memories of Cassie came rushing back. It was, at the same time, happy - sad - wishful - tragic - heartbreaking. This photo was taken almost exatly one year ago today on 6/27/04. Oh, how she loved her food - even if she couldn't eat it.

An Introduction

2005-06-30T05:02:00.000-04:00

Cassandra Anne Akers was born the afternoon of Saturday August 17th 2003 in Fairfax, Virginia. She was the second daugter of myself and my wife Daria, and sister to then 18-month old Lesley Kennedy. Cassandra died early Wednesday morning April 6, 2005 after being in a coma for 8 days following surgery. The operation was routine, something went wrong, and Cassie never woke up. To this day we still don't know what happened, what went wrong, or where to go from here. This blog is my attempt at putting some of my thoughts and feelings to words to help me with my greiving process. I also hope that someone out there will read this and find something that helps them, too.

This first entry is pretty emotional - it's tough to type through your tears - so let me just say that I miss my precious little girl so very very much and there isn't a day, and hour, a minute that doesn't go by that I don't think about her silly smile, big beautiful eyes, and wish she was still here with me.