Serenity Grace Miller

[annamiller]

I'm not sure how to start this post....so I guess I'll just give you my daughter's life story. It's always best to start at the beginning, right? On Nov. 9,2009 I gave birth to a healthy and beautiful baby girl. We (my husband, her dad, and I) named her Serenity Grace Anna Miller. She was the most beautiful baby I have ever seen. She had a head full of dark wavy hair, and she was stunning. Anyways.....we took her home, and she was healthy and happy and the easiest baby. She never cried or screamed or threw fits for no reason. Whenever she cried, it was because she needed something. She was wonderful.

When Serenity was 6 months old she got sick. One morning I changed her diaper, and I found blood in her poop. It scared the hell out of me, so I rushed her to the emergency room. They couldn't figure out what was going on, so I took her to her pediatrician the following morning. He sent us down to get Serenity admitted into the hospital, so they could run tests on her. I was so scared! Serenity's platelets went down to 6,000 (a healthy person's platelets are between 150,000-350,000) and her liver and spleen were also enlarged. That ment that she had an infection of some kind. They couldn't figure out what. So they brought in a specialist...and he said that she had Hemolytic Uremic Syndrome (HUS). Its a bacteria and I guess it's kidna like the ecoli bacteria or something. And I can't figure out she got that. It still baffles me. Anyways...her platelets never go back to normal and her liver and spleen are still enlargred. The docs discharged her, and told us that she needed to see Dr. Hansen, who is a hem/oncology doc. So that scares me. What the heck is going with my baby?

We see him for 6 months before he tells us that she might have Juvenile myelomonocytic leukaemia (JMML). He sends us down to Salt Lake City, UT to get a second opinion. And the doctor there told confirmed the diagnosis. My heart broke. I didn't know what to do. I even forgot how to breathe for a while.

So on February 18, 2009 Serenity had her day of chemo. She was still playing, smiling, laughing, and being wonderful through everything! Her last day of chemo was Feb. 26. On February 27 she had a bone marrow transplant. Everything went well....She slept for 5 days. When she woke up from her slumber, she was ready to play and cuddle and watch Elmo. Elmo was her favorite.

Anyways....about a month after the transplant she get discharged. Serenity and I stayed in SLC while my husband worked to support us. So we were out of the hospital for 2.5 weeks. Then I took her back in because she was having symptoms of graft vs. host disease (GVHD). That's where the marrow attacks her body thinking it's a foreign object. Sure enough, she had Stage 4 GVH in her gut. That's the worst kind. So Serenity and I were in the hospitalfor another 4 months trying to get the GVH under control. Finally, they got it under control but it was never gone. So she got discharged, and 2.5 weeks later we got to back home to Boise, ID. I was so happy! We could all be a family again. It was WONDERFUL!! i CAN'T EVEN BEGIN TO DESCRIBE HOW HAPPY I WAS!!! I woke up in the mornings to my baby smiling at me, and being silly. And lunch time my husband would come home, and we would sit down at the table as a family and have lunch. And same for dinner time. It was my dream.

On Sept. 11 my husband, Serenity, and I drove down to SLC for a routine 1 month check up. On the way there she was fine and so happy. She was a little car sick, but nothing to worry about. About an hour after we got there, she got sick REAL FAST! Her temp went to 102. It was a hot day so they waited about another hour before taking her temp again. It was 104* and her heart rate 230! Her normal heart rate was around 115, and her temp was usually 99. So HOLY COW!!!! It just got worse from there. Her lungs started having problems, so they put her on a CPAP machine. And that worked for a while, but it wasn't enough for her. They put her on an oscillator, and she was on the highest setting possible. She was sick....and that's putting it mildly. Sept. 10 was a Thursday. On Friday night (11th) she almost passed away. I was so scared. I was by myself. My husband went home that morning to get clothes because we didn't pack (because we thought it was going to be a day trip). I was so scared. I have never prayed so hard in my life!! She started getting better around 6 am that morning. She was making slow progress for 2 days, and I was elated. I knew that she was still very very sick, but progress is better than none. Then it went down hill fast. The docs put her on a conventional ventillator. And she was doing great! She was even trying to breathe on her own!! Then the neurologist came in and saw that the Serenity was trying to breathe on her own. She wanted to put the machine on "spontaneous" so Serenity could try breathing on her own. And a half an hour later her lung collapsed. ( Collapsed in the sense that it was deflated and couldn't open). And that's when all the problems started. Her lung collapsed probably 5 times. And on Thursday, Sept. 17th the doctor told us that her right lung wasn't working properly. It wasn't releasing the CO2. And she said that they would watch her for a little while to see if it would go down. And she also told us to call family. Serenity's CO2 levels never went down. And there wasn't anything they could do. Soren (my husband) and I had to let our baby go be with Jesus. They kept her body going so we all could say good bye and hold her and love on her. Once everyone got to the hospital, it was time to start saying our goodbyes. They took her off all her meds besides her paralytic, sedative, and pain medicine. They brought in a couch, so we could take turns sitting down to love on her. We eventually told the nurse to turn off the ventillator. And she died quickly and painlessly in my arms at 3:16 pm. I got my chance to say goodbye, but it doesn't make pain any different. I miss my angel so much. She was the light of my life.

I wish I had the words to tell you how blessed I was to have her. She was AMAZING!!! Through chemo and transplant and GVH and all that crap, she never stopped smiling or laughing or being happy. She was always happy! She was such a lover too. She was always ready to give hugs and blow kisses to everybody. Anybody who met her instantly fell in love with her.

She changed me. I am a better person because of her. She made me into the person I am today. She deserved the best, and I was going to try my hardest to be the best for her. She was truly an amazing baby.

I have a hard time getting out of bed in the morning and doing something. I'll get out of bed just to go lay down on the couch in front of the tv. I don't know what to do or how to do it anymore. I feel like GOD created me to be Serenity's mom. And now that He took her from me, what am I supposed to? How do I keep the drive to keep on living? I am ready right now to die. I'm not suicidal or anything. It's just that if GOD chose this moment to take me; I'm ready. All I want is to feel her chubby little arms around me and pat my back. And I want a kiss from her. I would sell my soul for one more hug and one more kiss from her. I just don't know what to do. All I think about is Serenity. I think about the "what ifs" and the "shoulda, coulda, wouldas". I know for a fact that she wants me to happy and go on living but I don't see how I can. Well, I have my good days and bad days...lately its been mostly bad. I put on a happy face for everybody, but I'm not happy on the inside. All I think about is my baby. Every time I look at the stairs in my house, I remember every time Serenity climbed up those stairs all by herself. She would get to the top, and sit there and clap! It was so cute!! Then once she was done with her rest, she would crawl or walk to her crib. Then she would hug her daddy and I and give us kisses. Then she would lay down and turn on her electic mobile. Cover herself up and lay down and go to sleep. She was the easiest baby! She was perfect!

I just don't understand why children get sick. It's not right or fair. I know in my heart that this was GOD's plan for her. It's not what I wanted, but I have to trust in GOD. I have to trust that HE has the best interest of my baby, my husband, and myself. It's hard for me to trust that right now, but I know eventually I will. Serenity isn't sick anymore and she's not alone. She's with my grandpa, my cousin James (who passed away at the age of 26 on Dec 31,2008, and Rebeka (who passed away last Sept at the age of 2 months). And she has a puppy. She loved puppies so much!

I don't know to conclude this, but all I'm going to say is that I have the hope of seeing Serenity and the other's that I have lost again. I have that hope, and I know once things get easier that will be a comfort for me. I continue to pray for Serenity, and I also ask that HE will give her hugs and kisses for me and tell her that i love her every night.

Anyways......thank you for reading Serenity's story.

[Sherry - Author/Speaker]

In looking at your daughter's picture, what a little sweetheart and you gave her a beautiful name. I am so very, very sorry for you loss.

First of all I think you told your story beautifully. I am a grandma who has lost two grandchildren. When we lost our second one I became so angry that at times I didn't know what to do. I would plunge myself into my work whether that would be at home or at my job. It just didn't seem fair to me. I am sure that is how you are feeling too right now. You will have many griefing stages. I went thru a stage wondering if there was something that maybe I could have done that would have change the outcome? I now know that I had no control over that but I did go thru a guilt stage. Then I wondered if I did something wrong and God was punishing me and took my daughter's children? And I know that isn't how God works. But I wasn't thinking straight. We often blame ourselves in situations such as these and we are not to blame. I did eventually find peace, joy, and faith thru God once again but I had to work thru many things.

Your daughter sounds like she gave you much joy and love and THAT is what you need to remember one day. I know right now the pain is almost overbearing but one day the memories will give you peace. Just remember to give yourself time to grief properly. Cry when you need to cry and laugh when you need to laugh. And find a friend who will allow you to talk about your daughter and who will be comfortable with you doing that. I have a friend who just lost her 10 month old daughter to another type of cancer and she is getting involved in trying to find help in finding a cure for children with cancer. It makes her feel like she is doing something for her daughter. You may want to think about something like this.

Again, my deepest sympathy to you and your family. My heart just broke and tears flowed as I read your story. Please take care of yourself.

[JonKoisMom]

What a beautiful baby and her name sounds like it was the perfect choice for her personality. I am so very sorry for your loss. I have two deposits in heaven. My infant son, Noah who died from SIDS when he was 7 weeks old and my oldest son, Jon. He was 37. I can relate to your pain. This is a very good place to come to share your pain, frustrations,and though it doesn't seem like it right now, your joy. Another good place to meet other grieving parents, if you haven't already found it, is on legacy.com . They have a group Loss of a Child. I go there regularly. I'm on my way to church right now, but feel free to email me if you would like to share more. My email address is on my page. You are in my prayers.

[MdmesX]

Thank you for sharing about your daughter. It's tough stuff you've experienced. Serenity was beautiful.