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

Tuesday, May 18, 2010

Gifts.

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.