June 1, 2014
Today is Sunday. It has been one week since my sweet angel passed away. The last month of Kera's life was a whirlwind of constant care, a decline her abilities which in turn made her extremely frustrated, and waiting for the inevitable to happen. We started on home hospice care on April 23rd. Kera was needing constant care at this point since she was no longer able to walk or stand on her own. She was needing help communicating since she was unable to talk anymore either. Our principal at the school was able to quickly contact the district special services dept to get Kera an Ipad that had a special program on it to help her communicate through pictures, words, and vocabulary. It was very helpful and is what we used the last few months of her life, and even up until the week before she passed away. Not being able to talk has been extremely frustrating to her, and she has struggled with not being able to do basic functions. She was still eating somewhat at this point, but it was very difficult because her teeth would clench together and I had to try to pry them open to even get a baby sized spoon in her mouth. This was also imaginably very frustrating as well. She still wanted to eat and she told me sometimes that she was just so hungry. :(
When the nurse started coming in, she came about twice a week at first, and an aide came three times a week to help Kera bathe. One night in early May we had a scare where she was choking on some bits of food, and her heart rate went way up and she was in distress. After that scare we started having the nurse come in every day. It was getting very difficult at night to keep an eye on her because she was constantly thirsty and always needing something to drink, or she would just need to adjust herself because she would slip down in the recliner and need to scoot back up. She didn't have the strength to pull herself up either. Hospice brought us a hospital bed right after we signed up with them, and that helped keep her propped up and more comfortable. She couldn't lay flat anymore because it made her too dizzy. Once Kera's right hand started to get weak as well was when kera had just had enough. Once she was unable to ring her bell I was no longer able to let her sleep alone with the monitor on in her room. She had no way yo signal me if she needed help. We were fortunate enough to have two hospice csn's come in three nights a week for about 6 or 7 hours and stay with kera at night. They both ended up being wonderful, and one of them in particular said she was prompted to come and take the job. Her name was Katie and she had an immediate connection to Kera and our family. She said she felt the spirit very strongly while she was sitting with her, and at one point in the night Kera reached her hand out and she just sat there holding her hand and comforting her. The Friday before she passed away her school class had an economics fair which she really wanted to go to. She was in pretty poor shape, but it was important for her to go, and I'm glad she did. She got to be in her class, see her teachers and friends, and be a part of her class for just a little while. I think it was also good for the kids in her class to see her and even though she was in her wheelchair and couldn't speak anymore, they got the opportunity to be with her one last time.
I'm so grateful to the hospice social worker the csn's for being able to help our family so I could get some sleep at night and so I would be refreshed to care for her in the day. We also had mine and Dave's sister come stay a night, and my mom as well. I think they will all look back and feel it was a blessing that they got to spend that special one on one time with her.
One of the most special experiences we were able to have in the last few weeks of Kera's life was to have her get her patriarchal blessing. This is a blessing that is offered by someone who is called to act in our Heavenly Father's name, and who receives knowledge about us and our Heavenly Father's plan for our life. It was the most spiritual moment of my life so far. The blessings that were promised to Kera and the explanation of His plan for her has given me so much comfort where I felt that I could accept Kera's diagnosis and eventual outcome for her and be able to understand that it is Heavenly Father's plan to be here on this Earth for only 9 years, and that the rest of her work will be on the other side and that our family will be reunited and I will get to raise her because of the Savior and his gift of the atonement so that we can all be resurrected one day. These concepts may be foreign to some of you, and I hope that if you have been touched by Kera's story and want to know more about the plan of salvation, that you will study more about this topic. You learn about it at www.mormon.org/plan-of-salvation. The knowledge that I have that our family will be reunited and can be together as an eternal family is the only way I am able to deal with Kera's death and have some peace.
It is Tuesday now and I'm still working on finishing this blog entry. It is difficult for me to be here writing about Kera's passing. We have had so so many tender mercies happen leading up to Kera's passing and even throughout the week afterwards there has been an increase in the spirit felt in our home. Jacob felt Kera's loving arms around him when he gave her eulogy. He knows she was happy with the words he shared in tribute to his sister. The fact that he was willing to talk and asked us if he could talk at her funeral shows his bravery and character. He also bore his testimony at church on Sunday, and shared his thoughts about our family being blessed to have her spirit with him and us throughout the week. He bore his testimony about the Savior and that he knew Joseph Smith restored our church and was given special keys of the priesthood. He also turned 12 on Thursday and In our church when you turn 12 you receive the keys of the aaronic priesthood and boys this age are able to pass the sacrament on Sunday and do other special and important things in our church. At first we worried about the timing of Kera's passing, and Jacob's birthday and then receiving the priesthood, but I feel like it all came together like it was supposed to, and Kera was there when Jacob was being set apart as a deacon in the priesthood, I felt her spirit so strong and Dave mentioned her name several times in Jacob's ordination.
The loss of my daughter will never be filled until I am reunited with her again, but I know I can feel her little spirit at different times in my life, and this will helpfully make the sting of losing her a little bit easier to handle. It is such an odd feeling, this physical loss of her in our family. I want more than anything to see her again and spend another day with her, but I know if I had one day, I would want another day and then another. It would never be enough. Losing and burying your child is the hardest thing to suffer through in the whole world. It is indescribable. I just have to wait for the day when I see her again, and pray for the gift of the Holy Ghost to comfort me and help me get through this. I know how special Kera is to her Heavenly Father. He wants us to know that he loves us and wants to help us get through this.
Just a note to everyone that has sent flowers, gifts, words of encouragement, all of those kindnesses have meant so much to our family. I am grateful to have this blog to keep as a record of our family's journey. It has helped me to write my feelings down and get them out. I was so fortunate to have a daughter as wonderful, kind, spiritual, generous, thoughtful, who radiated beauty, and who's heart is just about as pure as the Savior's. I was lucky enough to be here mother for 9 years here on earth, and can't wait until the time when I will be able to continue raising her.
As I mentioned in the beginning, this journey is not over yet. The passing of Kera has closed one door, but now we are on to another phase in the process. There will be continual struggles and heartaches, but I am grateful for the peace and comfort that I have felt throughout this process, and good friends and family to lean on during those hard times, and I know there will be many more of those hard times and days when I will feel like I cannot take the pain anymore. I will need to be strong and continue to lean on the Lord and my faith to get me through, just as I have done so far.
