Ahh sweet Tatum. Obedient and true to the end. Lance and I and the kids had all been praying for her to be able to pass peacefully without pain. My addition was that we all be together listening to sweet music holding her and loving her. I wanted the kids to not be frightened and to feel comfortable holding and kissing on her.
She obediently waited for all of the end of year activities of school to finish up and to not conflict with a few other important things that were happening. Then she was so peaceful and sweet this entire day. The kids were all here and it was so peaceful and not scary. On top of all of our requests, she truly went over and above and gave us an entire bonus day to just spend with her. I was able to hold her almost the entire day, and not feel tired. (Maybe I dozed a few times, but I was still holding her.)
We started off the day sending the kids up to their beds after our slumber party with Tatum. Shortly after that the Nurse Practitioner from our Pediatricians office came by to check on us. Tatum had been awake all night and we just really wanted her to be able to rest comfortably. She helped us feel so much comfort as she expressed her feelings about what she felt Tatum was feeling. We decided to give her a little extra of one of her seizure meds to see if that would help her to settle down and rest and to not resist what her body was trying to do. Then she helped us to clean up Tatum's tube sight that had been leaking fluid. After she left Lance and I sat with Tatum for the next few hours just holding her and enjoying her. This was such bonus time because I was so sure that she would pass the night before.
About mid morning I got a text from a neighbor saying that she had left something on our porch. This is what we found:
Later in the morning our Pediatrician called to check on us, as he was out of town. Then a little later one of the ladies from his office called. She was my "Therapist" when Trevin was sick so many years ago. It just had a calming influence to know that they were thinking of us and praying for us.
Tatum was finally able to rest. I was holding her and kissing her and smelling her. I am sure I was driving her crazy. I wasn't sure if we had minutes or hours or days or weeks left with her , so I was trying to soak it all in. I really wanted to just memorize her smell, her feel in my arms, every inch of her.
Once she seemed like she was settled for a bit I decided that I would take a half hour and take a shower since I hadn't showered the day before. We all feel better after a shower right? I put on a comfortable skirt and a cardigan because I knew I would be ushering my sweet elect daughter to the other side. I wanted to be dressed appropriately to be in the presence of her and her welcoming committee of other elect angels. Then I brought out a towel so we could give Tatum a bath. As I was getting things ready I realized this would be the last time that I would be able to care for her sweet little body. Oh how I love that body, even though it was so broken, it is still how I know her. My heart was just sick as we lifted her to the towel to see all of the horrible things that this disease had done to her body. It was so nice to be able to clean her up and get her in fresh jammies and a fresh diaper and blanket, and change her g tube dressings. I washed her hair and her face and her hands and feet. I have said it a hundred times, but it has been such an honor to care for this sweet little angel.
We took her sat monitor off and just checked her off and on throughout the day. All day she was satting at mid to upper nineties with NO suctioning. I did not understand how. She had always seemed so fragile, until now. This girl had a lot of fight in her. Walker style, as Hayden would say "like a boss"! One part of me really wanted her to be able to rest and go be with the family on the other side but I was certainly enjoying this sacred time with her. I know that it was one of her many gifts to all of us, namely me.
Overall this was a quiet day, with just a few visitors. About 4:00 I noticed that her breathing was getting shorter and faster. When I checked her sats she was still in the mid to upper 80's. She is simply amazing. It was comforting to me to know that she was not being deprived of oxygen. Your first instinct as a parent would be to want to just turn up her oxygen level but that would just prolong her agony. Even though her breathing was getting a little more choppy she was still really peaceful. I just kept loving her and talking to her and telling her that everything was OK. At about 5:15 I noticed that her breathing had become a little shallow and less frequent. I called to Lance to gather the kids if they wanted to be there with her. We all gathered around and held her hands and kissed her and told her we loved her and she quietly took a few more breaths and then just stopped breathing. It was really so peaceful. No struggle at the end. Our sweet Tatum can now rest. No seizures, no swelling, no fevers, no g-tube, no oxygen, no more pokes. She is free to move. So much relief for her. So much sadness for us. Our kids have been so brave during all of this. When I look into their eyes my heart aches to know their anguish at losing someone that they have loved so dearly. Like their baby sister they have been champs and demonstrated such strength and grace through it all.
We sat with her for another half hour and then we made a few phone calls and sent a few text messages to let people know. Then we called the mortuary to come around 7pm. I was so happy that she would not have to have an autopsy or be in the morgue at the hospital.
We sat with her and loved her and took turns holding her. It was so nice to hold her sweet little body close to mine without her pillow between us.
Luckily someone came and dropped off some food to us or we may have starved or forgotten to eat all together. People are kind and wise. The nurse practitioner came to our home again to check on us. Again, can you understand why I love these people? The mortician showed up right after that. We all visited for a bit and then we prepared to say our final goodbyes. This is where the heartache begins again. There is that initial shock of this has really happened. Then you start to feel a little numb and you don't feel the reality as much (the Comforter) and then you have to just hand your baby over. In reality I had never even been away from Tates for more than a few hours straight in her entire life. My mind and my heart were not sure how to process this.
The mortician brought a regular van so that the neighbors didn't have to see a hearse, and let me add she didn't have to ride in one, casue that's creepy, right? He waited outside while we said our goodbyes to her mortal body. We all kissed her and then I changed her diaper for the last time and wrapped her up nice and Lance and I walked her out to the van. We put her on the stretcher and he wrapped her in a blanket and buckled her in and then quietly drove off with the focus of my life for the past year. I cannot even explain the emptiness that has since filled my heart. I know that I will survive this and that my life will carry on, but there will forever be a whole in my heart where this little sweetheart is supposed to be.
Tatum has taught our family so much. We will never forget her gentle sweet tender spirit. Her unwavering strength will forever be an inspiration. Good night you spiritual giant. Well done sweet daughter, well done. We love you Tater Bug!