"Grieving the loss of a child is a process, it begins the day your child passes and ends the day the parent joins them."

Friday, May 28, 2010

April 27th & 28th, 2010

The following picture boards were made by Ashleigh and her friend Kelsea. They did a great job. It was very difficult for both the girls to do. Kelsea loved Carly nearly as much as Ashleigh. They worked until the wee hours of the morning to have them ready for visitation on the 27th. If you click on each picture, the picture should enlarge for better viewing.

The following poster was made by Carly's class.


Many flowers were sent, several came from across the United States. They were all beautiful and they filled the viewing room and beyond. Ashleigh and her best friend spent hours upon hours putting together several picture boards and a video clip that was played during visitation. Carly's classroom made a poster and each child told the teacher what they wanted to say to Carly. The teacher typed up each saying and printed them off and placed them throughout the poster board. Under each saying, the child signed his or her name. The one that choked everyone up, was from Shanna, it said "Carly please come back from Heaven, I want to play with you again". 6 of Carly's classmates came to the visitation. One of course was her best friend, Shanna who went to preschool with Carly from the age of 3 1/2 . They were best buds. Kept in the same classroom each year because of the bond they had. Poor Shanna, she was in such denial. She had no understanding of what was taking place. Shanna was convinced that Carly was coming back from Heaven to play with her and that Carly was only going to be gone for a while and then she'd be back. Even though her mother talked to her during visitation and reminded Shanna that "Carly will not be coming back. Carly is in Heaven with your Papa". Shanna would NOT hear that. She just wouldn't. Other friends of Carly's that came were very much aware that Carly was never coming back. We hugged those kids tight and we cried with them. We thanked the kids for being Carly's friends. We told the kids that Carly loved her friends so very much and we were so glad that they loved her back. We told the parents that we felt they should be very proud of their children for being so kind and compassionate to our girl. It was very difficult to see all those kids. But, it made us feel good knowing those kids did love our girl. Many kids from the upper grades came too. I didn't know many of them, but their parents told Paul and I that their kids insisted on coming to tell Carly goodbye. What an impact our little girl made on everyone.

On a side note~Carly's Oncologist, Dr McAllister and Carly's Nurse Practitioner, (from the cancer center) Judy were both at the visitation on the 27th. Dr. McAllister was the on call doc for that week and couldn't be gone long enough for the service. They were both very upset. I guess it likely had something to do with them both seeing first hand, how Carly fought to survive her leukemia, chemo and 2 nearly fatal blood infections. They were both really shaken up.

These flower arrangements, Carly would have LOVED! Yes, you're seeing the smaller one correctly; it's a dog. And, it was sprayed with a tinge of tan colored paint (hard to see that in the pic). It looked very similar to Carly's 3 year old cockapoo. Who misses Carly as much as we all do :( . The one behind the dog is an ice cream cone done in Carly's favorite ice cream flavors; strawberry and vanilla. Both these were purchased by both of my sister in-laws.

April 28, 2010:

We arrived at the Funeral Home by 10am. The service was to start at 11. Our local Funeral Home is very old. I believe, at one time, years and years and years ago it was an actual house which was turned into a Funeral Home. Although, all of the years that I can remember, it's been a Funeral Home.

As people started arriving, our family had already been seated. We could see that the Funeral Home Director was scurrying around and pulling chairs out and placing them all over. In the hallway, the entry way on the ramp, which the caskets are rolled out to the waiting hearse. There were even people seated on the stairway that lead to the second story and standing out on the entry way steps. We were all very surprised at the amount of people who were in attendance for Carly's funeral. And pleased to know, that our precious girl did in fact touch many, many lives.

As we sat waiting for people to be seated. A steady stream of people came to pay their respects to our family and to view Carly. As we sat, we noticed the people coming in. One was Carly's infusion nurse, Susie from the Cancer Center at UofM. A few people beyond her were Carly's Cardiologist, Dr. Crowley, from UofM. and our family Doctor, Dr. LaBerge.
We spoke to each one of them before they were seated for the service. Dr. Crowley knelt down with tears in his eyes, telling us that "I wish I could have done more for Carly". We thanked him for the many years and wonderful care that he had given to her. Even though she hated his Donald Duck impression, for which he was famous for! Carly was his only patient that told him "NOOOO", when he'd come into the exam room quacking just like Donald Duck. A little background on Dr. Crowley, he has been a Pediatric Cardiologist with UofM for over 30 years. He is one of the kindest, caring most compassionate doc's that we ever encountered over the course of our 8 years with Carly.

11:00 the service begins:

**for those of you who don't realize it, you can click on the blue wording to link you to the readings and such**

Our Pastor spoke a few words and we prayed. Then we had the song "Go Rest High On That Mountain", by Vince Gill play by CD over the intercom. After another short message from Pastor, "Jesus Loves Me", sang by a children's choir was played by CD. (my mom always sang that song to Carly). We then had a reading which was done by my Aunt Linda, it was the Down Syndrome Creed. The next song that followed that reading, "Every Mothers Prayer", by Ciline Dion. Then came another reading, this one read by our Pastor. Heaven's Very Special Child. After that reading, our Pastor, unbeknown to us, announced that we was going to play his guitar and sing a song for Carly. I don't know the name of the song, keep forgetting to ask, but he changed the wording up a bit and put this in the chorus, "Carly's singing in the choir". Hopefully someone can recognize that short verse and let me know the name of the song. None of us has thought to ask the name of it...The service went on, Pastor read Ashleigh's letter to Carly and smiled through the entire letter, even though everyone else in attendance, was in tears. He continued on with the service, and did a wonderful job. He choked up a couple of times, surprisingly not during his singing. We also had the song In The Garden played by CD, to which many people sang along with us. As the service ended and all prayers were said, we had one final song played. Carly's most favorite song, "The Climb", by Miley Cyrus.

One of Carly's several "The Climb" performances. It was taken on Christmas Day. Wish I'd thought to switch on the movie mode on the camera.

As the funeral ended, both my brothers and 2 of my cousins husbands, carried out our baby girls coffin and loaded her into that god awful hearse. While arm in arm and side by side, Brad, me, Paul and Ashleigh followed behind.

I'll blog about the amazing balloon launch at the cemetery next week. Trust me, it was just that...AMAZING. Some people even say that it was eerie. I only wish that someone would have thought to pull out a phone and snap a picture. But honestly, everyone seemed to be just to mesmerized, to have thought of a picture.

Wednesday, May 26, 2010


*for those of you who don't know already, you can click on the blue words to view the links*

Gift #II

This necklace was a gift from my online friend, Polly and her family. Polly's family is going through such a trying time right now. Her daughter, Kristen is battling leukemia for the 4th time in her life. Recently, Kristen received a bone marrow transplant. Kristen is known to the blogging community as the "Rock Star". Knowing that Polly took time out of her very hectic life to think of me, makes this necklace even more special. When I opened this necklace. It too, brought a tear to my eye. Actually, these necklaces brought many tears to my eyes. The dark red gem, is Carly's birthstone. This is another gift that I will cherish forever. Thank you Polly.

If you would like a necklace like this, actually there are many different necklaces. Click here. Ashleigh is getting one also. I snap a picture of it when it gets here. Her necklace will say "forever sisters" on the larger one and have Carly's name on the smaller one along with Carly's birthstone and a small heart charm.

This picture doesn't do the necklace justice. It's very shiny and beautiful.
I'm a little upset and that this picture didn't turn out very nice. Almost makes me want to
take another one.

I had a real life friend tell me just the other day, that she couldn't believe the amount of support that our family is receiving from all of my online friends. She said, "Joany, it's unreal the amount of support you have with your online friends". So, so true. Most of them, we will never meet in person. However, I did meet one of those friends, Ashlyn's (who is battling leukemia for the second time) mom, Nicki. Nicki had to drive her mom to UofM for an appt. It was just a couple of days after Carly passed away. If I'm not mistaken, the drive for Nicki from her home, to Ann Arbor is around 7 hours. Nicki took her mom to the appt., and dropped her off. Then headed to my parents house, which is 35 miles of back tracking, from Ann Arbor. Nicki may not have realized how much I appreciated that visit. But I really did. Thank you Nicki, for making your way to my parents house that day.

Monday, May 24, 2010

Paths crossed.

Back in the beginning of April, I believe it was April 6th, my mom and I took Carly to the dentist for a cleaning. Due to Carly being a cardiac patient, she had to be pre medicated before any dental procedures. On this particular day, Carly flat out refused to take her 2tsp of medication. This was a bit of a problem because she needed it 30 minutes before the procedure. Well, it was 9:25am and her appt was at 10am. We had 35 minutes to get there, but the drive alone would take 30 minutes. So,,,,,, my mom says to me, "hop in the back with Carly to get her med's in her and I'll drive till we get to the highway". Okay, that works...except Carly still wouldn't take her med. As mom is driving my Chevy Venture (mini van), mom says, "Joany, this van drives really nice, like a car". Carly finally finished her meds. Mom and I switch drivers. Off we go on the highway.

After we get done with the dentist, we head out to the van. Just so happens, torrential rain fall was coming down. As I'm placing Carly in her car seat, mom heads around the other side of the van to get in the backseat. She always rode in the backseat with Carly. As mom is getting into her side, a white Ford Explorer pulls up beside her. This lady rolls her window down, I could see a man in the driver seat. They asked if we knew we had a flat tire. We didn't know and due to the terrible rain coming down, we may not have even noticed it until we were out on the road. This guy and gal wanted to change that tire for us. I thanked them, but went on to tell them we have AAA insurance and they'd send someone out to us. These people were really wanting to help, but I thanked them and told them we would just wait and there was no need for him to get soaked in the pouring rain.

Fast forward to last Thursday. A guy (I knew he was coming, he had called first) pulled into our driveway to look at our mini van which was for sale and listed on Craigs List, which is how he found it. He looked it over. Liked what he saw and then asked if he could take it on a test drive. I told him sure. He jumps in and takes it for a ride. When he got back he made this comment, "I can't get over how good this van rides. It rides like a car". Of course, I had to tell him about our trip to the dentist in April. and how my mom had made a comment just like that after having to drive my van. At that point, this guy asks me, "What dentist do you go to?" I thought that was a little odd. I gave him a surprised, or startled look and told him who the dentist was and what town her office was in. What he said next, nearly made me faint. Here's what this guy said, "that tire right there (while pointing), was flat in that parking lot wasn't it?" My arms suddenly weighed 10 tons each. My response, "yes, it was flat". His next words hit me square in the gut, "That was my wife and I who pulled up next to you in that parking lot asking if you needed help changing that tire".

We stood in my front yard and talked for quite a while. We were both in disbelief that our paths had crossed before. He told me that his wife was going to flip when he got home and told her what van he had just looked at. He also told me he remembered seeing a cute little girl in pig tails stretching her neck trying to see who was pulled up alongside the van. Yes, he knew that Carly had passed away. Paul had told him that when he called to inquire about the van. Paul only told him, because this guy wondered why we were selling a van if there was nothing wrong with it. We sold it because none of us could stomach getting into that van without Carly. It's hard enough having to live in this house that is full from one end to the other with toys, books, crayons, dolls, doll houses, DVD's, CD's, puzzles, workbooks, etc.....

This guy did end up buying our van. He and his wife and my family were all completely shocked as to how our paths crossed in that parking lot and just a little more than a month later, they crossed again. And by the way, we just bought a white Ford Explorer, almost identical to the one they still have. Isn't it eerie sometimes, the paths we cross?

Thursday, May 20, 2010


This is a keepsake. Given to me by the Social Worker at the hospital where Carly passed away. It's a porcelain heart on a thin gold cord (I think I will be buying a chain). The open heart had a solid heart within it, it was on smaller thin golden cord. That smaller heart, was for Carly. We had it tied to her tiny little wrist and had the heart placed so that she was holding part of that heart within her tiny little hand. The reason it was not place around her neck was because she wore her "Angel" 14K gold necklace that was given to her by a friend at her End of Chemo Party.

This keepsake is such a treasure. Knowing that my girl has the other part of that heart. Just as she will always have part of my heart. Forever!

Tuesday, May 18, 2010


Gift #I.

I've been receiving many gifts in the mail over the course of these horrific 3 weeks.This one came first, from my dear online friend Susan Berg.

Just wanted to share these beautiful and most treasured gifts. Yes, gifts. I have received 3 necklaces in the mail. Each one completely different from the other. For today, I'm sharing the Down Syndrome Awareness Pendant. It's the first necklace sent to me by an online friend. On the back of the pendant is Carly's name, with a heart on one side of her name and a cross on the other.

I will treasure this very precious gift forever.

The following is a little information behind this pendant:

this pendant was designed by Micah when he was 7. he drew a similar picture
while thinking about his little sister who has Down syndrome, aka trisomy 21. the
holes represent three chromosomes on the 21st set. there are a total of 47
instead of the usual 46, so 47 dots. please understand that because i make
each one by hand, they are each unique. Micah's creativity is AMAZING

If you don't have one of these click here to get yours!

Sunday, May 16, 2010

The Quietness is Deafening.

Oh the quietness, it is deafening. What I wouldn't give to hear Carly yelling at the top of her lungs, "Mama. MAMA. MAAAAMMMAAA" What I wouldn't give to hear that glorious laugh of hers. A laugh that made everyone around her laugh too. The quietness is deafening.

Gone are the days that our sweet girl would be blasting out her boom box to Hannah Montana/Miley Cyrus, Selena Gomez or Trisha Yearwood Christmas CD, oh how Carly LOVED that Christmas CD. It was a year round thing! Gone are the days when my sweet girl would laugh and laugh at me when I would get the hiccups...which is often.

Sleep does not come easy for me. I just can't fall to sleep. Eventually, I nod off, usually around 3am. I have yet to sleep in my bed. Our bed, which was shared with Carly and Paul. Paul, well...he feels closer to Carly by sleeping in our bed. Me, I just can't bring myself to lay down and know that she is not laying between us. Evenings are terrible. Bedtime rituals that should be being done, are no more. The quietness is deafening.

Morning comes and I can barely roll off the couch. I hate the morning. It's a reminder that I should be getting my 8 year old fed and ready for first grade. So, I lay there. For several hours. Finally managing to get myself up. It's usually around 11.

Everything reminds us of Carly, as it should I suppose. When it rains..we think of her. She would be flipping the bird to each window in the house. She didn't care for rain. When the sun is shining we are reminded.... she would get so excited and sign, "sunshine". The wind blows, and we think of how she hated her hair blowing in her face. She always had those darn wispy hairs that drove her nuts.

Our house is full, from one end to the other with Carly's toys, music CD's, books etc. Oh, how we miss her "reading" her books. She would run to me and tell me, "All books mama". That meant, she wanted me to get a whole stack of books from her bookshelf and carry them to the couch, where she would sit and "read" for hours. When she would finish with one stack, she'd yell, "All done, more books". And it would continue for hours on end. The quietness is deafening.

We miss her more and more each day. We go often to her grave. It's the most horrific feeling. A feeling that I am sure, will never leave me. I know everyone claims the pain will lessen. I honestly, do not see that happening. Carly was my entire world. It's like part of me died along with her that day. A day that still seems so surreal.

The quietness is deafening.

Tuesday, May 11, 2010

The day our world stopped turning.

I've wanted to sit down and blog, but just haven't really had it in me. To be honest, I don't have a whole lot 'in' me to be able to 'do' much of anything. No energy. No desire. Very little sleep. About all I can do, is take a shower, at some point in the day, and eventually eat something at dinner time. This is just so surreal to us and likely, it will always be.

Warning: This is a long and somewhat detailed post.

The day our wold stopped turning:

On that horrific day, April 23, 1010. I had kept Carly home from school. So thankful for that. She wasn't sick, but she did have some allergies flaring up. Her nose was runny and she had drainage in her throat. Poor kid, she just couldn't figure out how to spit the drainage out. So...she would get up in the morning and gag until she finally would vomit. And that would be the end of it.

We woke up at 8am and headed for the bathroom. She went potty, and gagged then vomited. She told me "all done" and I took her puke bucket and cleaned it out. She walked into the living room, still sleepy. I asked her if she wanted me to rock her. Of course she said yes. She LOVED rocking. As we rocked, she fell asleep. I kissed her forehead, told her that I loved her and rubbed her back as she slept. It was a peaceful sleep. No rattly sounds in her chest/lungs. No deep or shallow breathing. Nothing out of the ordinary. Just precious time rocking my 8 year old for 2 hours. Two hours I will cherish for the rest of my life.

Around 10 am she woke up. Her first words were, "Paul"? (daddy-who Carly called by his name and she would have it no other way) I told her that he was still sleeping. Paul had worked a late night shift and hadn't gotten home until 5:30am that morning. Well, Carly being Carly argued...she insisted that "Paul wake up". I went on telling her he would be up later to play. She then wanted to sit in the rocking chair herself and watch her favorite TV show, well one of many favorites. So, I went to the kitchen to get her morning med ready. In the meantime, Carly asked me for a drink. I tried to convince her to drink apple juice, but she wanted her strawberry yogurt drink. I gave in to her, as I normally did. She drank that yogurt drink and asked me for more. So....I gave her another one.

10:30 am., I came into the living room with her med in hand. (she was on the tale end of a course of an antibiotic for a UTI) Recently, Carly had gotten to the point where she would take the syringe out of my hand and give her med's to herself. Not this day. She screeched "NOOOOOOOOOOOO"! Which really threw me. The screech threw me. I had never heard that sound come out of her mouth. Ever. I told her that if she didn't take it herself then I would give it to her. At that point a shrill of a screech came out of her mouth. It sent chills up my spine. It was as if some kind of pain shot through her body. But then she was okay. Or at least all appeared okay. At that point, I told her that we would do the med's later. I also told her I was going to get her bath ready.

10:35 am., I turned to head to the bathroom to start her bath. As I walked several feet away from her, I heard a thump. I turned back and saw her on the floor, in front of the rocking chair. She was sitting, facing the chair. By the time I got to her, she had fallen back on the floor into be a fetal position. I turned her over and saw blue lips. I also noticed her arms, particularly her right arm, twisting and contorting. As was her body, kind of..not terrible. My first thought. Seizure. Now, mind you...Carly hadn't ever experienced anything like what I was seeing. I started yelling for Paul, but he couldn't/didn't hear me. I ran to the bedroom screaming for him to get up. Once he was up, which was a matter of several seconds. Carly was purple/blue over her entire body. Paul laid her out and started CPR. We had a hard time because she had her teeth clenched and we couldn't pry her mouth open. By this time, I was on the phone with 911. I was instructing Paul on what the 911 operator was telling me to do because Carly had her teeth clenched. Paul worked and worked on her. Finally, getting her back to breathing.

10:40 am., a lady burst into my front door. She was an EMT who was in the area and heard the call come through. She beat the ambulance, but only by about 3 minutes. She came in and knelt down to Carly. Carly's color was back, she was breathing again. She was limp and not contorting any longer. I had turned to grab a Kleenex when Paul yelled, "Joany, Carly's okay now, she just flipped the bird to this lady". You can not believe the relief I felt at that moment. Carly was back, in true Carly style. Yes, I admit, my girl flipped the bird. No matter how we tried to break that naughty habit, she won out.

10:55 am. Carly is loaded into the ambulance. They worked on getting IV's started. An EKG was done. And blow by oxygen was given to her. All signs pointing to a seizure. Her EKG was near perfect..well, perfect for her heart issues. We decided that Paul would ride to the hospital with her. She was stable. No need for both of us to ride along. They headed off to UofM. UofM is about 35 miles from our home. The EMT's were starting another line on Carly, when Carly...still being a stinker right up to the end...stuck her tongue out at the EMT's!

As my parents and I were heading to the car, the cops came. They have to when a call comes in regarding a child. We talked to him for what seemed like hours, but it was probably less than 5 minutes.

At this point, I have no time line. We left my house in my parents car around 11:10-11:15. Heading to UofM. I had already called ahead to Oncology and Cardiology. They were all in agreement that Carly had just had a terrible seizure. But, they were going to head to the ER and check her over.

As we drove through our small town and head toward Ann Arbor. I had an eerie feeling come over me. Not claiming I knew something bad was brewing. Just a weird feeling. Now, I'm pissed that I had that eerie feeling come over me. Cuz now I know it meant my girl was losing her battle.

About 15-20 minutes after leaving our house, my cell phone rang. A number I didn't recognize. But knew it was a familiar area code. I answered. It was Paul. He asked me where we were. I told him on the highway. And then I heard him say, "you need to turn around Joany, we had to stop at Chelsea (Community Hospital), it's not looking good".

We arrived at Chelsea within about 7 minutes. Paul was standing outside the ER doors crying. I jumped out of the car, while my dad was still driving. Slowly, but driving. I ran through those doors and was escorted to a "consult room". Well, we all know what that means. We've been escorted to "consult rooms" in the past. It's always a very bad sign. Within a few minutes a doctor came to get us and take us to Carly. She was alive, but just barely. They were keeping her heart beating by doing compressions. They had bagged her, to keep her breathing. I begged them to keep working on her. I screamed and yelled at the head doctor. I told her she was failing my child. KEEP working on her. This doctor looked at me and said, "I'm sorry, but we've been doing this for close to an hour, she isn't responding, she is dead". I looked at that lady in a way that I'm sure scared her. So she ordered another shot of Epi. Which by the way was the 10th shot given to Carly on that day. They continued to work for a few more minutes and then. They stopped. Carly was in my arms until that faint heartbeat ended. Time of death, 12:05 pm April 23, 2010.

Monday, May 10, 2010

Ashleigh's letter to Carly

This letter was written by Ashleigh and given to our Pastor, just before Carly's funeral to be read aloud. None of us had read what Ashleigh had written before the service. I don't think that there was a dry eye in the entire funeral home.

Hopefully, you all can click on the letter to make it bigger and make it easier for you to read.

I will share more about the beautiful service another day. And beautiful it was.

Tuesday, May 4, 2010

The Broken Chain

We little knew that morning, that God
was going to call your name.
In life we loved you dearly,
In death we do the same.
It broke our hearts to lose you,
you did not go alone;
for part of us went with you,
the day God called you home.
You left us peaceful memories,
your love is still our guide;
and though we cannot see you,
you are always at our side.
Our family chain is broken,
and nothing seems the same;
but as God calls us one by one,
The Chain will link again.