"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 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.

47 comments:

Savina Pernisco said...

joany, dear, dear joany, i cant imagine your heart ache. mine aches for you and i only know you all thru the internet. I am sure those prescious 2 hours of you holding her and rocking her is probably the only comfort you have to hold onto for her last momemts on earth. what a gift that is for you to have.

Thank you for sharing your last day with her. I am sure it was the hardest thing for you to ever right.

It all makes no sense. and just is not fair for good people to go thru. I hope you will get answers to why she had died. what a nightmare that you must feel you can never wake up from.

RK said...

Oh my goodness. I'm so sorry that you even have a story to tell. But I'm very thankful that you've shared it with us... because even though so many of us didn't "know" Carly, it is helpful to know what happened. Maybe for closure, maybe for just plain info, and maybe so that we can pray for your heart as you will have to deal with all these specific memories for some time to come. Thank you for sharing Carly with us.

We'll continue to pray.

Kacey Bode said...

That was so hard to read, I cannot imagine how hard it was to live through. I will continue to pray for you, wish there was more I can do.

my family said...

I just can't imagine nor will I pretend to, all I know is that I am so sorry that you lost your precious angel but you will see her one day in Heaven.
Our prayers remain with you and know you have friends all over to listen and support you

Runningmama said...

You don't know me, but I have been following your blog for a short time as my daughter Emily is 11 months and also has DS. I have been praying for your family. Know that Carly will always be an inspiration to those in the DS community. There isn't anything anyone could say to make you feel any better, just know that we are out here praying for your family.

Carrie said...

I have no words. We're praying for you and your family. ((HUGS))

Terry Family said...

I am so sorry for your loss. I don't have the right words or believe they even exist. God bless. I'm praying for you and your family.

Lacey said...

im sitting at my doctors appointment crying. Thank you for sharing your last moments with your sweet girl. I hope you find out exactly what caused her heart to fail so you can have some peace! Love to you

Tara said...

Praying for you and your sweet family. Thank you for sharing her life with us.

The Hapa Girl said...

I'm not even sure what to write. But I know that your Carly will be in my heart forever...

stephanie said...

Joany... I could barely read that. Sorry if I sound ridiculous but it was like watching a movie and you know the ending but you still hope it different this time.
What a blessing that you kept her home from school and had those precious hours to rock her.

Prayers and hugs...

Dez said...

Joany, thank you for sharing the last minutes of Carly's time on this earth with us. I'm so glad that you had those precious 2 hours rocking your lovely daughter that day. My heart aches for you still. If you ever want to talk, let me know.

Cathy said...

I don't even want to pretend that I have any idea of what you are going through. Just know that many of us around this world are praying for you.

Sweet Pea's Mommy said...

Thank you for sharing those precious last hours with us. Carly was a truly blessed little girl and we are all better for having "known" her, even if only for much too brief of a period of time. Your daughter's letter was perfect and I still have tears streaming down my face. We will continue to pray for you and your family.

Kristin said...

Thank you for sharing such an intimate moment in time. So heart-wrenching. I cannot even imagine. What a precious gift those 2 hours rocking her must be for you. Life isn't always fair, but your family will be forever blessed to have raised Carly for her all-too short time here on Earth. Praying for peace for you and your family.

Rochelle said...

Thank you for sharing your last precious moments with Carly with all of us.
We can't begin to imagine your pain but, we are praying daily for your peace.

The VW's said...

Reading this, there are so many emotions going through my mind! I can't even begin to put myself in your place....I can't imagine the pain you must have felt that day and the heartache that you must feel since that day! You must be so emotionally drained!

I can see blessings from this day and maybe you can too....like not sending Carly to school and having that precious time with her rocking together. This is a memory that you will hold forever!

Yet, that day holds more pain than any parent should have to face! I am just so sorry that your family has had to endure such a significant and sudden loss!

Carly was such an inspiration and so full of life! Thanks for sharing her with all of us! I'll be praying that you are given peace, stregth and grace today and always! Love, Hugs and Prayers!!

Heather said...

Brave and so very unselfish of you Joany, to share those precious,intimate moments with your incredible girl.

Sending you continued prayers of peace and strength as you navigate your days without Carly.

Cory said...

{{HUGS}}No words... but I continue to pray..

Bulldogma said...

The fact that you spent the morning with her, rocking her and loving her... thank heavens you did! You will always know that Carly knew just how much she was loved.
She is so lucky you are her mother, and she is always going to be with you. In heaven, it is my belief she is freed from many of the bonds mortality creates... chemical, physical, but not emotional. She will always know how much you love her, and she will hope the ache in your heart doesn't last too long. Love means wanting those we love to always remember how to feel happiness and joy! I know she wants that for you.
Hugs

Mer said...

I can't imagine the terror of what you went through, and the pain that you feel now. But I am praying for you, and I know that God is surrounding you with his arms, providing more comfort than I could possibly convey in a comment. Much love and many prayers to you and your family.

Angi said...

I cannot describe the sadness I feel for you and your family, thank you for sharing your daughter in life and in her passing, such intimate and loving moments you were able to spend in those last few hours, please find peace in knowing how many lives your very special girl was able to touch, love to you.

Kelli said...

I am at a loss for words. I can't even imagine the pain and heartache that must come from the loss of your child. We are still thinking and praying for your family.

heather said...

I'm sure I am like every other person who reads this post. Crying. It's so close to my heart with Morgan being so close to Carly in age and temperament. Morgan went into respiratory distress back in January and I honestly thought we were going to lose her. Luckily we were in the hospital and she was able to get the intensive care that she needed. But at that moment I kept thinking how much I needed Morgan and all of the challenges and frustrations that come along with her. I felt the loss of her in that moment and got a glimpse of the pain it would be to not have her with us. I hope that all of our prayers will help you in this difficult journey and the knowledge that you will see her again. Big hugs!!!

Stephanie said...

I'm sorry or We will keep you in our prayers just doesn't seem enough. I just done't know what more to say or do.....We WILL be keeping you in our prayers.

Hugs!

Stephanie and Christopher

Tina said...

Oh Joany, I am so sorry that you had to write this, no parent should have to relate such an incident, you should never have had to go through what you did. Reading it made the whole morning so vivid for me and so painful, my heart aches so so much for you, and yet I can't even begin to know what you and Paul must be going through. In all that the morning brought what a blessing that you got to be together with her stroking her and having your baby sleeping in your lap, think of this precious time together, which i am sure you do all the time.

Carly is in my thoughts all the time and so are you and Paul. I pray that one day some how you are able to face the future and that the pain which I am sure will never ever go away, will become more bearable. Your pain which is so huge needs time to heal, I know it's still too early to imagine this but there will be a time when the days get easier which will NOT mean that Carly is forgotten....she will always be alive in your heart, she is ever present in the things around you, remember Carly loves her mama so much and needs to be close to her so thats exactly where she will be until you meet again.

Sending you much love....

Kelly said...

As I read this post, I found myself crying and smiling.....crying for the loss of a sweet soul and for the heartache that you and your family are going through....and smiling, knowing how many lives Carly has touched. Thank you so much for sharing her story with us! Keeping you and your family in our thoughts and prayers.

Bailey's Leaf said...

I am so sorry.

Tiffany said...

Praying for you all.

kecia said...

oh i don't even have words! I can hardly see through my tears to write anything. thank you for sharing this...i can't imagine how difficult it was to write it all down. We have all been thinking of you and will continue to pray for you. My heart aches for you. I think it is truely a miracle and a blessing that you were able to rock her for 2 hours that day!!

Kristine said...

What happened to your beautiful little girl is just heart wrenching. I read your brave recount with tears streaming down my face. I'm so sorry. I continue to pray for your family.

Aunt Christine said...

My beautiful sister, Patti, and niece, Marissa, have brought me to your page. I am so sorry to hear of the such sad news of your beloved daughter. My heart goes out to you and your family as you continue your journey in Holland. I pray that you will be comforted in the moments that bring a smile to your heart as you cherish each one...

in love and compassion,
Aunt Christine <><

one_plustwins said...

Joany, I know another "I'm sorry" will not change how you feel. But please know we will continue to pray for your family and I am so very sorry Carly is gone from your presence.

Mary said...

That was so difficult to read. I can't imagine having to live through it. Your family is in my prayers.

Crittle said...

Joany. I can't imagine your pain. Please add me to the long list of those that are thinking of you and supporting you in any possible way right now.

Jeana said...

Want you to know I think of you and your little girl daily.

Anonymous said...

There are no words..I'm so sorry to hear about the loss of your baby girl. Thank you for sharing your story, you and your husband and family are in my prayers!!

JennyH said...

My heart still breaks for you. Thanks for sharing your story with us and your sweet Carly with us.

What a terrible day to live through. SO glad you kept her home that day and you were with her during her last minutes.

Megs said...

I don't know what I can say other than thank you for sharing your sweet angel with us. Our family is praying for your family. We are so sorry for the loss of your sweet angel.

Tausha said...

I am so sorry, I am just so sorry. Tears are running down my face and I ache so badly for you and your family. Thank you for sharing your private feelings with us and your sweet little girl.

Michelle said...

Oh Joany, I can't believe how quickly it all happened :( I'm so sorry you and Paul had to endure that most awful time. And with no answers to what caused it all. I'm crying just reading your account. Much love, prayers, and hugs.

Posh Totty said...

I am so so so sorry.
Love to you all Xxx

Mama Mason-Mann said...

I am so very sorry for your loss. Thank you for sharing with us. I find it hard to catch my breath just reading about it, I can't even begin to imagine living it. You're in my thoughts.

Lea White said...

I am so incredibly incredibly sorry to read this post. It breaks my heart! I will keep you in my prayers and thoughts!!!!

Cindy said...

I sobbed as I read your story. I am so sorry for the pain you have been through. Your family will be in our prayers.

Anonymous said...

I don't know you. I'll probably never meet you, but I am so very sorry for your loss. There are just no words. I cannot even fathom what you are going through. Again I am so sorry.

kamsmom said...

Joany & Paul, I don't know you, but my heart goes out to you and the rest of your family. I cannot fathom the pain and sorrow you are feeling. I have a son with Down's and I cherish every moment with him, as I can tell from your story that you did as well with Carly. I pray for strength and healing for all of you. You will never be far from my thoughts. Remember the smiles, laughter and joy along with all the wonderful memories that you had with Carly to help you thru this most difficult time. You will now have a very special Guardian Angel watching over you. God be with you.