Kailee

Feb 14, 2010

 

My story is so long, I will try to keep it as short as I can.

On Sept. 30, 1999 I woke up a happy, divorced single mother of 2 beautiful girls. Cassidy, age 3 ½, and Kailee, 18 months.  But it became one of those mornings where everything seems to go wrong. The girls were just so fussy and out of control. My normal babysitter called to say that she couldn’t take my girls because she wasn’t feeling well. I called everyone I knew to see who could take them so I could go to work. Finally, my sister said she would be happy to have the girls over there. I wish I would have known how the day was going to go. I would never have left them.

Kailee was my light; she was a joy to be around. Always had been. Kailee always had a smile on her face and LOVED everyone and they loved her. I had many neighbors and friends that would often ask if they could take her and watch her because she just always smiled and was so loving-- giving hugs and kisses to everyone.

I left my girls with my sister and went to work. After noon, I left my office to get a drink. At 3:37 p.m. my cell phone rang as I sat in the drive thru waiting for my drink. I didn’t recognize the # so I didn’t answer. I listened to the voicemail and realized that it was the West Valley Police. I tried to call back—but no answer, tired to call my sister as she lived in West Valley, no answer. Tried to call my mom, no answer. Panic started setting in.

Then my phone rang again. It was the police telling me that my daughter Kailee had been in an accident and was being life flighted to Primary Children’s hospital, the helicopter would take 6 minutes to get there and could I please meet them there. She would give me no more details than that. I drove back to my office to get my purse and things…..I don’t know why I thought I needed them but I was trying not to overreact or panic. I didn’t call anyone at that point. I think I went into shock.

Two of my friends from work drove me to Primary Children’s Hospital, which was only 10 minutes away. As we walked into the ER I told them my name and why I was there. The nurse that was working the desk gave me a knowing look and “said just a moment.” Then she walked away. When she came back she had a social worker with her. When I saw this, I was sure that Kailee was dead. The social worker asked me to please follow her to a conference room, which again made me sure she was dead. I was wrong. She told me that Kailee had nearly hung herself on a swing set and that the doctors were still working on her and didn’t know if she would make it or not. I was shuffled to a different waiting room and still had not heard from my sister or mom. I didn’t have any details and I was still in shock and trying not to overreact. I know that sounds funny but I didn’t want to be the mom that calls everyone and gets everyone worked up to just have my child home in a few days. Looking back that seems so silly.

An hour or so later my sister and mom showed up and so did other family members. As my sister walked in she was sobbing and said, “I didn’t mean to kill your child.” Of course I didn’t blame my sister…I didn’t have any details…didn’t know what had happened.

She told me that she had been in the backyard with my girls and her 2 daughters that were the same age as my girls. Her phone rang so she went to answer it leaving the girls in the fully fenced yard. While she was talking, she went to put a load of laundry in, did dishes-- the kinds of things we all do as moms. Cassidy, my older daughter, came in and said “Kailee fell”. Lorisa asked her if Kailee was okay and Cass said yes. Cassi came in a second time and told Lorisa that Kailee was sleeping in the tree so my sister went outside with her and found Kailee hanging from the rope swing in the tree. She was blue and not breathing. Lorisa, did CPR and called 911. She was not able to get Kailee breathing again. The paramedics arrived and then the police. They worked on Kailee for about 20 minutes-- trying to get her breathing again, got her started and then she would stop breathing again. This happened 3 different times. The paramedics later told me that saving Kailee that day has haunted them. That they knew how she would end up.

I did not and do not blame my sister, she did nothing different than I would have.

Back at the hospital I was finally able to see Kailee, I didn’t know at the time that she was on life support or the gravity of the situation. I just remember thinking I have driven past this hospital so many times in my life, I have always known it was up here and had no idea what was going on inside these walls. So many tubes and children in such dire circumstances.

With near hangings and lack of oxygen injuries it takes 72 hours for the brain to fully swell so the damage isn’t done right away. The damage happens as the brain swells. In 1999 they didn’t do anything for this, they just told me to wait it out and we would see what happened. Now they have hyperbaric chambers and they do far more to prevent the damage.  Kailee was crying and reaching for me. Her feet were still dirty from being barefoot. In my mind this meant that we would be there for a few days and then we would go home. I was so naive.

Over the next week I began to realize that I was not going home anytime soon. After that first time I saw Kailee she was never responsive again. After a week in the PICU the doctors told me that she would never live off of life support and that if she did she would be in a vegetative state. I was alone with the doctors at this time, walked out of the PICU to a room full of family and friends waiting, threw up on the floor, apologized and then for the first time in a week left PCMC. I remember driving home looking at other people thinking,  “How can you be smiling, how can you be driving? Don’t you know how much I hurt? Don’t you know how my life is falling apart? How can I be alive still and hurt this much?” I didn’t think it was possible to hurt that much and still breathe.

I got to my house, went to my bed, laid in the fetal position under my covers and cried all night long. Somewhere in my grief that night I realized that I was powerless to change any of this. I needed control of something and the only thing in my life that I had control of was me. There was not one thing in my life that was the same from the morning of the 30th to the evening of the 30th.

I collected myself and went back to the hospital, made the decision to take Kailee off of life support. What a horrible thing to have to decide about your child, your light.

Kailee lived after she was taken off of life support much to the doctor’s surprise. Kailee was in Primary Children’s hospital for the next 3 months. She went from the PICU to the “Floor” then she was moved to the Rehab unit. I had to quit my job to be able to take care of her. I had to sell my house and move in with my parents. I lived at the hospital. I learned to love being there, learned to love the people. I had decided that night in my bed that the only thing I could control was my attitude. I had to do this, it was my child, I didn’t have a choice. I could either do it with a bad attitude or try to find the positive in it.

When they sent me home with Kailee, the therapist at PCMC told me that I needed to know that having a healthy child become handicapped is the same as experiencing a death of a child-- that I needed to grieve everything I lost, that it was ok to mourn my sweet healthy Kailee. Not only that, but because of Kailee’s condition, I would learn to love this new Kailee, figure out how to care for her, and then I would lose her as well because she could go at anytime.

Kailee was not able to communicate in any way. She could not see, swallow, sit up, or move. She was in diapers, she was on 12 meds, and she had seizures and scoliosis. She had a bacolifin pump and was fed through a “J” tube.

She never got any better than that. In fact she got worse. I cared for her at home and got an average of about 4 hours of sleep for the next 4 years.

About 6 months after her accident I had one of the worst nights I have ever had in my life. I was so lonely. My family was wonderful but I was so alone in caring for her. She would scream 24 hours a day…one night while she was screaming at 2 in the morning, I lay on the floor of my dad’s den which was now the room I shared with my girls. I lay there and kicked my feet and pounded my fists telling Heavenly Father that I was angry and couldn’t do any more pain. I swore at him, I sobbed, I felt so sorry for myself and for Kailee. I knew that I was on the verge of a nervous breakdown.

But somehow I got through it. I met my now husband the next day and what a blessing his is and was to me.

On October 28th 2003 Kailee started breathing funny. She had lots of issues and we had spent 3-4 days a week at PCMC over the last 4 years but never for breathing. I watched her for a day and then I took her into my pediatrician. I did not take her to the ER because I knew what they would do. I had decided long ago that I would care for Kailee and love doing it as long as she was able to be here and breathe on her own. I did not want her hooked to life support or trached. As much as I wanted to keep her here forever I knew that was so selfish on my part. She did not know who I was or anyone else. She only knew if she was comfortable or uncomfortable. She had no quality of life. My sweet doctor helped me make arrangements and I took Kailee home with Hospice coming to help us. That was on a Tuesday, and they told me that I had a week left with Kailee. As the week went on her body started shutting down slowly one organ at a time and on Sunday Nov. 2nd my sweet angel went home to her Heavenly Father.

I now got to mourn for the loss of my handicapped Kailee. Sept. 30th and Nov. 2nd are very hard dates for me and always will be. It has been 10 years since her accident and 6 years since her death. It is so hard to imagine that it has been that long. It seems like yesterday and like a different life for me.

The pain does get more dull, it is and always will be there, but time does help. It is so hard for me to see other disabled children. I want mine back! I want to be a part of that world again, as hard as it was, I miss it so much. I miss feeding bags, meds, wheelchairs and yes I even miss Primary Children’s Hospital very much. 

I am so very grateful for all that I gained from this and I WOULD NOT CHANGE ANY OF IT. If you told me that I could have Kailee back whole and healthy but I had to give up who I became and what I learned from going through this hell-- I wouldn’t do it. My Kailee sacrificed so that her mom could be a better person and hopefully someday help enough people to make it worth it.

I am grateful to Kailee because I have learned obedience, I have learned that just because I don’t understand why this happened and why she had to be like this, I know that I had to do it and that the Lord would and did help me to get through it no matter what.

I am grateful for the spirit and love that she brought into my home. I am grateful for the love that she has taught me. There is a love that you can’t explain unless you have given such selfless love that comes from serving another person. I love all of my children but I LOVE Kailee because I know that I am one of the only people who completely cared for her.

I am grateful for the patience and humility that she has taught me.

I am grateful for the person that I have become and the person that I want to be because of Kailee. I would not have any of this knowledge or these blessings if I had not experienced this.

I would love to have my daughter back whole. I miss her so terribly that I can’t even put it into words or even think about it too much. But I would not give up what I have been given because of the loss.

Lots of love

Annie Hedberg

 


Comments

Rebecca on 02/15/2010
Thank you for your beautiful story. The hell that you have gone through is truly amazing. Thank you for sharing your pain, not only the loss of your daughter, but the loss of your daughter twice. May the Lord bless and keep you in your time of pain.

Shara on 02/15/2010
I bawled reading this. You are such a strong woman to share your story with such raw emotion. Thank you. You helped me feel more grateful for the blessings in my life (and more hopeful to fight the challenges that are always ahead). Thank You.

Rebecca Jeppson on 02/15/2010
Thank you for sharing your heart, She is beautiful and your strength is amazing!I really appreciate your prospective on having a child with a disability- you have shed a new light on it that I have never saw it from. God bless you and your family.

Mabel Blaster on 02/16/2010
You are an amazing women. Such an inspiration to go through what you went through and come out on top. Thanks for sharing!

Miggy on 02/17/2010
When I read stories like yours or Molly's I feel like a coward... I hear you talk about the woman you became and how you wouldn't change it and I silently think "Heavenly Father, please help me become a better person, but not like that. Not in a way that really really hurts." I admire you and not just because you went through something hard that you had absolutely no control over, but because you did come out better and stronger. Sometimes we assume it's the natural assumption that trials make you stronger and better, but it's not...it's truly how you handle them and endure and you obviously have handled it well.

Tracy on 02/17/2010
Thank you for your sharing your story. It has really touched my heart and brought many tears as I read it. I am especially grateful for the last part of your story - how you have been changed and have grown from your sweet daughter. I too cared for my disabled daughter 24/7 until she passed at 2 1/2 years old. It has been almost 5 years since her passing and I am thankful every day for her sweet life and the many things she taught me and still does teach me. I completely agree with what you said...."Kailee sacrificed so that her mom could be a better person and hopefully someday help enough people to make it worth it." I have often felt that same way and often find myself wondering if I am doing enough. I hope I am. Thank you for helping remind me of the things my darling girl taught me through reading about your darling girl.

Heidi on 02/19/2010
Wow. I am hugging my children after reading this & telling them how much I love them. You are completely amazing. What a life-altering trial. Thank you for sharing your story and your lessons. It's something we all need to learn. Sometimes with me - more than once.

Linda ( Spencer's mom) on 02/20/2010
Annie, what a beautiful mom, and beautiful little girl. Few people will go through the kind of on- going grief that you live and learn from. No one would choose to do so, and most people can not comprehend your loss or your pain or...your gain. The kind of sacrifice and the service you gave- and your attitude about it ALL truly is awe-inspiring, yet you explained you felt she sacrificed for you. Words fail me. ( That actually doesn't happen too often.) You wrote your story so perfectly...thank you. Thank you for sharing your heart.

JosephJ on 02/22/2010
This tragedy feels so heavy for me to read about, yet your positive resolve and long-developed faith in the outcome impresses me. Grieving appears such an insurmountable obstacle, even though we see and hear about people who find their way through it. Thanks for sharing.

Sue on 02/25/2010
I am crying as I feel your raw pain! You are an amazing individual... that you could go through the toughest of experiences yet make the choice to move forward day by day in a positive fashion. God bless you and your family.

Marcy on 02/26/2010
You are amazing. Thank you for sharing your experience .

Eileen Jensen on 03/12/2010
Your Story is amazing and very similar to my very own. Thanks for sharing.

Keri Bryant on 04/07/2010
Beautiful, awe-inspiring and powerful. I am continually amazed at the strenth that God gives women, especially mommies. Thank you for sharing. xx Hugs to you and may your life be filled with joy and peace.

Bridget on 05/16/2010
You have my tears and compassion. Wow. Your strength is amazing. As I reflect upon my own grief and healing, I look at who I've become since my son died. And no, I wouldn't change that, either. Funny how that works.

Sheri Perl on 09/09/2010
I lost my son Danny on July 1, 2008 to an overdose. He was 22. In dedication to him I formed the first and only Prayer Registry for parents who have lost children. Please see my website and read about The Prayer Registry. This free website service is dedicated to all of the families who have lost children, whatever age that child was when they passed. This site registers the anniversary day of our children's crossing. The members of this online community,the Prayer Team, have the opportunity to honor their child's legacy, connect with other bereaved parents, and participate in world-wide group prayer for every registered loved one on the anniversary day of their passing. There is no charge for this service; it is my sincere hope that every bereaved parent who registers a child will join the Prayer Team and be a source of prayer for all of the children on the other side. Each time another child is registered, the Prayer Team grows larger and stronger. Please email Sheri at theprayerregistry@gmail.com to register your loved one on The Prayer Registry. By registering, you will have a forum to connect to other bereaved parents and you will be able to upload comments, photographs, biographies, or any other information you want to share about your child with our community of bereaved parents. Once registered, you will be a member of the Prayer Team and will receive Prayer Registry reminders one day before the anniversary day of one of our kids. Please feel free to email any questions, concerns or feelings that you would like to share. My door is always open. I hope that this site provides some small measure of balm for the wounds of loss. From one bereaved parent to another, I welcome you to my site and offer my support. This is one club that none of us would join by choice, but since we find ourselves in this unthinkable place, we stand stronger when we stand side by side. I lost my son Danny on July 1, 2008 to an overdose. He was 22. In dedication to him I formed the first and only Prayer Registry for parents who have lost children. Please see my website and read about The Prayer Registry. This free website service is dedicated to all of the families who have lost children, whatever age that child was when they passed. This site registers the anniversary day of our children's crossing. The members of this online community,the Prayer Team, have the opportunity to honor their child's legacy, connect with other bereaved parents, and participate in world-wide group prayer for every registered loved one on the anniversary day of their passing. There is no charge for this service; it is my sincere hope that every bereaved parent who registers a child will join the Prayer Team and be a source of prayer for all of the children on the other side. Each time another child is registered, the Prayer Team grows larger and stronger. Please email Sheri at theprayerregistry@gmail.com to register your loved one on The Prayer Registry. By registering, you will have a forum to connect to other bereaved parents and you will be able to upload comments, photographs, biographies, or any other information you want to share about your child with our community of bereaved parents. Once registered, you will be a member of the Prayer Team and will receive Prayer Registry reminders one day before the anniversary day of one of our kids. Please feel free to email any questions, concerns or feelings that you would like to share. My door is always open. I hope that this site provides some small measure of balm for the wounds of loss. From one bereaved parent to another, I welcome you to my site and offer my support. This is one club that none of us would join by choice, but since we find ourselves in this unthinkable place, we stand stronger when we stand side by side.

ella steele on 03/28/2011
i lost a son to a murder.i said goodbye to him that night when i went to the sandwich shop he worked at 35 minutes prior to his horrific death.he was 17 years old.he was an honor student.it is reaching the 10th anniversary of his death.it never gets better.but it just gets managable.my heart will always hurt for my son.victims impact paid for my sons headstone.what a blessing it was to have the help.i love and miss him deeply.nothing is worse then losing a child.my sons name is blaine steele.thank you for listening.may the lord be with you.sincerely a grieving mother.ella steele.

Sheri Perl on 08/18/2011
My son Danny. He passed on July 1, 2008 of an overdose. In his honor I formed The Prayer Registry. The Prayer Registry is open to anyone who has lost a child. There is no fee for this service. Each child is prayed for every year on the anniversary day of their passing. To register a child contact theprayerregistry@gmail.com and give me the full name and passing date of your child and he or she will receive mass prayer on their Prayer Date and you can become a member of this wonderful Prayer Team. Prayer helps everyone.


Sheri Perl on 08/18/2011
Annie, Thank you for sharing your story. I am very impressed by your attitude. You are such a beautiful person.


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