Chapter 48 - Final Chapter

Dear Diary- 12/19/12

            This will be my last entry for Samantha’s journey. In lieu of flowers, for Samantha’s passing Jeremy came up with the most wonderful idea to honor Samantha. He said we should get a brick or a bench at the zoo, which would be something she would have thought of most definitely. The trickle of cards and gifts has come to a stop and it is time to read through them once again. Beautiful and caring words have adorned each and every card and note that we received, and my heart has been touched. Sending out thank you cards seem so trivial in comparison to all of the love that we have been shown.

            This year is coming to an end and a new year will start bringing each of us new roads for us to travel. We each have our own journey, destination, or path to glory. For me, I think mine has just begun, a new journey, filled with exciting outcomes. I have to say I’m a little scared because I feel my past has always had a purpose, taking care of Jeremy and Samantha. Of course, Jeremy is grown with children of his own that I hope to share many moments with in the years to come. And I know that Samantha is busy being a Guardian Angel. So what does lie ahead for me? What will this new purpose be? I guess only tomorrow knows exactly what will be in store for me. I guess tomorrow will bring the challenges I need to keep me strong. I guess tomorrow will be the day that I remember to continue to thank God for. One thing I am sure of, tomorrow will remind me that Samantha’s life here on earth was filled with unbelievable challenges. And with those challenges she never faltered, she never veered from her path, always, always showing love and generosity. I can only hope that I can live up to her legacy and continue where she left off, although how I feel right now this very moment those are pretty big shoes to fill.

            I would like to thank you for the opportunity to share Samantha’s story through my eyes and my heart. God bless each and every one of you.

Chapter 47

Dear Diary- 12/13/12

It has been a week and three days since Samantha has left me here on earth. I stepped outside tonight with the dogs and my cup of coffee. I looked up into the sky and saw the first star and I said: “starlight star bright first star I see tonight wish I may wish I might have this wish I wish tonight”. Of course, the old saying is that you do not tell your wish or it will not come true, however; I know this wish will come true so I am not afraid to tell it. My wish was for Samantha to have peace. After saying my wish I asked Samantha to let me know that she was there and that she heard me and that I love her with all my heart and that I would love her 1000 times, that my love would shower her daily and that I will miss her forever and ever. Just as I spoke the last word a shooting star moved across the sky and I knew it was her, I knew it was my sweet girl Samantha. A smile came across my face that even now I am beaming with gladness and joy.

As soon as Samantha’s celebration had passed, Tuesday morning came, and along with Tuesday morning a fever and illness has struck my body. Lynda says its caregiver’s illness, those that take care of someone and never have time to get sick, when that task is over then you do get sick. Well, it sucks to say the least and I need it to be over so that I can start getting on with my day. I have Christmas cards to fill out, thank you cards to write, and gifts to wrap. So, hot toddy help me tonight!

Chapter 46

Dear Diary- 12/11/12

Last night we held Samantha’s Memorial party. The Lenero family was so gracious in allowing us to use their restaurant for Samantha’s celebration. Erin did a fantastic job creating an atmosphere that Samantha would have loved. More than 250 people greeted, hugged, cried, and shared memories with Bill, myself, and Jeremy. I cannot express enough how grateful I am for the joy that was shared last night.

Over these past five months, creating this blog for Samantha has been an effortless task that I wish I did not have to end. This was Samantha’s idea to create this journal and I am so glad that I was able to do this for her. I am extending a heartfelt thank you to all of those who have read her life’s journey and to those who have shared her life’s journey. God bless.

Chapter 45

Dear Diary- 12/8/12

Throughout Samantha’s entire life, I had always prepared myself for her death. Of course, now it goes without saying there is no preparation for death, nor is there preparation for life. I do think however no matter what the journey is that your loved one or yourself for that matter is going through you need to decide if you will participate or not participate, concerning life there really is no sitting on the fence. By staying neutral, thinking that this position will keep you from harm or getting hurt will only be cheating yourself in the long run, cheating your loved one as well. It’s only been a couple of days since Samantha has passed away and I find myself going over and over every trial, every situation, every struggle to see if there might have been something I could’ve done differently. Not that it matters now, and I couldn’t begin to tell you why I’m even thinking about it except for the fact she’s not here. I’m always saying don’t have “I wish I would have’s”, because life truly is too short not to give everything your best effort.

Samantha passed away December 3, 2012 at 9:45 AM. Her dad had spent the last few nights over as not to miss any time that she had left, and I’m really glad that he did. That morning I had just given Samantha a rub down with some wonderful oils and changed her pajamas, snuggled her back into bed, although she was in a very deep sleep I have to believe that it made a difference for her. Her dad had just brought in a cup of coffee for himself and for me, he sat on one side of Samantha and I sat on the other, and at the same time, we each took her hand as Samantha took her last breath. Feeling so burdened for Samantha these past three months that she was in devastating pain, I felt a sense of relief and my first thought was as I watched her take her last breath was that she was finally pain-free. The last two weeks of her life, I prayed and prayed that God take her, this was no life for her just lying in bed controlled by the morphine that was so heavily running through her body. Jeremy had arrived just moments after Samantha had taken her last breath and I could see on his face that he wished he had been here just moments earlier to be with her. However, I know in my heart Samantha knew that Jeremy had been here these past few weeks holding her hand, telling her that he loved her and that it was okay to go, it was okay to leave, because she had so much more waiting for her and so many people eager to greet her.

Samantha’s wish was to remain at home and to be dressed in her wedding dress. Samantha looked beautiful; Jeremy, Bill and I spent the first hour with her before Lynda arrived to help me prepare Samantha for the family. As the day unfolded, family and friends came to mourn her passing and share in our grief. Each time we came into the room with another family member Bill, Jeremy and I noticed Samantha’s face soften, her lips formed a sweet smile and her head gently leaned to one side. So many people that have been to viewings, said repeatedly that they had never seen anyone look as soft and sweet as Samantha did. My guess is typically when a body has not been prepared for a viewing the body can become distorted and unpleasant looking, most definitely this did not happen with Samantha. I believe that it was our sign that she was truly in peace.

This week has been extremely difficult for me to readjust emotionally and physically. Samantha had been so organized in the orchestration of her dying by purging her belongings, deciding who was going to get what, that when Jeremy and I went through her things there really wasn’t much for us to take care of. She was most definitely an amazing woman, strong and courageous, a hero in my eyes. She also wanted to have a party in her honor, which we will hold on Monday. This truly will be a celebration in her honor. Bill, Jeremy and I along with Jeremy’s wife Erin have been working diligently to make every detail perfect. I am truly amazed how effortlessly this entire process has been. I didn't realize how much work there is, how much business there is with dying. Samantha chose to be cremated, they took her body Monday around six in the evening and she arrived back home escorted by her father Friday afternoon where Jeremy and I greeted her.

Lynda took me shopping today to buy a dress because I don’t really have any nice things to wear, being is that I had a uniform for work and when I came home I would jump into my sweat suits, and I wanted to look special for Samantha’s party. Needless to say, I feel badly for Lynda because it was very difficult for me to shop for this occasion. I did manage to get through it, hopefully Lynda was unscathed by the experience. Tomorrow is Sunday and I think I’m going to stay in my pajamas all day. I may even watch movies; I’ll just let the day unfold.

Chapter 44

Dear Diary- 12/5/12

One of God’s angels here on earth just got her wings.

Samantha Marie Schnettgoecke passed away on Monday December 3, 2012 at the young age of 25.

Although her life had many hurdles and challenges, she always kept a positive eye on the horizon. All whose lives she touched were inspired by her strength, her courage, her perseverance, and the love that she had for everyone including animals. Samantha was not only inspirational, but she taught us what the importance of life was all about.

Samantha’s family would like to take this time to thank everyone for your prayers, support, and encouragement throughout the years.

Samantha is survived by her mother, Therese Schroeter, father, William Schnettgoecke Jr., her brother, Jeremy Lee and her many relatives. Samantha was a beloved Daughter, Sister, Granddaughter, Aunt, Niece, Cousin and dear friend to many and will be missed dearly.

A memorial celebration will take place on Monday, December 10, 2012 from 4:30pm until 9pm at Vincenzo's Italian Restaurant: 242 South Florissant Rd. Ferguson, 63135. In lieu of flowers, memorial donations can be made in Samantha's honor to the St. Louis Zoo Foundation: PO Box 790290 St. Louis, 63179. www.stlzoo.org/give

Chapter 43

Dear Diary- 11/26/12

This morning I called the doctor to see what the status was on hospice coming in today, they had just sent over the paperwork at 9 o’clock to the hospice office and by 12 o’clock they were sitting in my living room going over the current needs for Samantha. A social worker and the nurse walked me through the entire process, we  went over Samantha’s meds and changed a few of them. Come to find out there are several meds that I was not aware of that Samantha will be able to utilize to help with nausea, the buildup of saliva in her throat, her head pain and comfort. I have to say I’m ecstatic about this new find and furious at the same time. All of this time I’ve been begging the doctors to help Samantha with these issues. What I don’t understand is why didn't they offer these drugs, these solutions to these devastating issues that she’s been dealing with over the past year and clearly over the past few months. Are these the drugs only offered to a patient when they have entered hospice? My instant reaction is to send a letter to each and every one of the doctors to let them know what drugs are being offered to Samantha and ask them if they knew about them and why didn't they offer them to her. Not that it will matter now, but it will certainly give me the piece of mind knowing that maybe the next person that comes along with these issues they’ll be able to offer them to those people. Sounding a little bitter am I? Absolutely, without any apology! Tomorrow is going to be a big day, because we have changed companies the bed and the pump and her suction machine will be exchanged for their equipment. A bit of a hassle but needs to be done. I do feel a sense of ease however because of the fact I can now have some relief for her. Knowing now Samantha's passing will be easier.

Today grandma and grandpa, dad and brother came by to see Samantha upon her request. She knows that the time is getting closer and wanted them to come sit with her today. I think now they all know that time is precious, it’s too bad though they didn't realize this years ago. I am happy for her that they were all able to come by and will be returning the middle of the week. Upon Samantha's request, I ordered all of the Christmas presents for the children in the family and they have been arriving daily. It’s 11:04 PM and Samantha is sleeping quietly. I have closed up the house, put the dogs to bed, and have taken a minute for myself to have a cup of coffee before I go to bed. I have no idea why, coffee should be a stimulant to keep you awake, but for me in the evening it helps me sleep. Crazy, I know!

Chapter 42

Dear Diary- 11/24/12

Well Thanksgiving was not what I had hoped it would be for Samantha. She has been nauseated and dry heaving since I posted last on the 21^st of November. Bill brought over enough Thanksgiving feast to last a week, which I enjoyed tremendously. Later that evening Lynda came by with the lovely montage of food from her Thanksgiving feast. I think I will be set for a while now and won’t have to cook. I have tried everything I have looked up to stop nausea and nothing is working. This last 24 hours has been the worst so far for Samantha. Not only is Samantha completely miserable but I am left feeling helpless. All of the things that I have tried that have worked before no longer are effective in this battle. The morphine patch now at 20 micro grams seems to be doing the trick for combating the pain in her head. Now as I see it, we have traded one monster for another, nasty disease this Cystinosis. I am making one last ditch effort this morning by giving Samantha Benadryl. As I was searching the web this morning, hoping to find something I came across an article that said Benadryl assisted in relieving nausea. So now, all I can do is to wait and see.

Some of the things I have tried so far in combating nausea, is; chicken broth, 7-Up, cinnamon, I even went as far as putting cinnamon in a pot of water so that the aroma would move through the house hoping for some calming effect, baking soda and lime mixed in water, and finally the Benadryl. Some of the antidotes to relieving nausea I cannot use because Samantha can no longer take anything orally, everything I give her must be crushed and put through her G-tube. Initially I thought the G-tube was going to be a hindrance to her care and I am finding that it has become a blessing. Because the swallowing mechanism is not working and she is pooling saliva in her throat not being able to swallow, it at least allows me the opportunity to try to give her some nutrients.

Last week I had set up a meeting for Friday with hospice and decided to go with a different company, one that Samantha’s doctor likes. Monday I hope to hear from them, I need that second opinion now to make sure I am doing everything I can for Samantha. Waiting is always the hardest thing to do, immediate results is what I want. I always thought that the thought of losing somebody was devastating, and I have to say watching your loved one suffer is by far the worst experience ever. Now I understand all of the stories that we hear about when a loved one assists their loved one in death so that they do not suffer. I was always one of those that said, “That’s not right”, now my feelings on the subject have flipped completely. Even though I understand how and why someone would help his or her loved ones die, this is something, I would never be able to do. I believe strongly that God is in control, and that creating life and death are part of the grander scheme. Once again, I am on my knees praying that God takes her now.  There is nothing more she needs to learn in her lifetime, she has suffered enough, she’s tired, I want him to let her go with him now.