I just had the opportunity to go and do some hand molds for a sweet little girl who had a disease that sounded similar to Trevin and Tatum's, but we had the super fast accelerated version and their daughter had the slow slow degenerative disease. The family was told a week ago that she probably only had weeks to a month to live they started getting some things in order. One of those things to get done was hand molds of their little girl. Someone else had tried but they didn't turn out, so a friend of mine called me to see if I would go and do them. I talked with the mom and we decided that I would go the next morning, but then something came up and we rescheduled to Friday. Thursday she called me crying and said that Hospice had told her that she probably only had hours left. They had family coming to say their good byes and then she called me to tell me I could come. I gathered my things and I headed up to Salt Lake where they live. I was glad I had a bit of a drive. I sobbed the entire way there. I wanted to get it all out so I could hold it together with them. They were all gathered in the living room holding their sweet little daughter, sister, granddaughter. We talked as we were doing the molds. They asked questions about Tatum and Trevin and I in turn asked them questions about their beautiful little girl. This little girl had suffered long and hard and had put up a valiant fight. No matter the suffering, it is still so impossible to fathom your life without these sweet children. I would have taken care of Tates and Trev forever, as this mom would have. Their suffering does allow me to be happy for them, that they are relieved from their broken bodies, but that never takes away the missing. Their home looked a little like ours did, with machinery and medical supplies all around. It made me long for and relive those last few months with Tatum. I miss every aspect of her, the good and the hard. As I said goodbye to this family, I knew what they would be facing for the next few hours, days, weeks, and months and my heart broke for them.
As I drove home tonight I sobbed like I haven't for several weeks. I relived those last few days and weeks with Tatum. The decisions we had to make, the time spent holding her, the way it felt in our home, the things I felt, the prayers I offered, the miracles we witnessed, the love I felt, the immense sadness and panic at handing her over to the mortuary. Just the other night I had told Lance how I regretted getting her the pic line. I know that it was either try to get her that permanent IV line or eventually the nurses wouldn't be able to get IV access and she would die like Trevin did. I just thought that all of the things we were doing to try and make her more comfortable with the pic line, the g-tube that all of that would also buy us more time with her. I was so certain of that, and so I am so heart broken to have to wonder if that all took her away faster. These thoughts are unbearable. I just miss her so much.
As I was driving to the family's home tonight I was also thinking about how lucky we are. This family has two older children and their sweet angel who is six. They were able to diagnose what their little girl has and it is genetic. So unless they are feeling really lucky and are willing to take their chances, they are done having children. It makes me feel overwhelmed with gratitude for the kids that we have. About a week after Trevin died I had a dream that the doctors had called me and they had figured out what Trevin had and they all wanted to come over and discuss it with Lance and I. I called Lance and told him to come home right away. to meet with the doctors. When I got off the phone in my dream, I woke up! Have you ever tried to go back to sleep after a dream to see if you could resume it? I tried really hard, with no luck! Unbelievable. For a minute I was really agitated and frustrated. Then like a warm blanket, I had this overwhelming peace and comfort that it was OK for me to not know what Trevin had. It was really strange, and I have never felt or thought anything like it since. I really never thought about Trevins diagnosis much after that. I never followed up with our doctors in Salt Lake or with my Pediatrician. When I got the autopsy report, I read it, but not in a searching way, more of a motherly way. I know that if I hadn't had that dream I would have been much more aggressive in my search for answers. I felt like I had the answers that I needed and that was that we may never know and I was OK with that. I always felt like this not knowing was a blessing to me for the work that I would later do at the hospital, because a lot of the patients that I work with will never know what happened to their babies, especially the ones that are still born. A lot of parents have to deal with that scenario. I felt like it made me more compassionate to their plight. Little did I know that it was because of this lack of knowledge that would allow us to be blessed with five beautiful, healthy children. We would have never been able to play those odds had we known what they were. What a divine plan . Not everyone is so lucky as us.
Right before I left this families home tonight the mom was expressing her feelings that the veil is thin, and that angels are near and coming to help her daughter to the other side. Then she said that she wouldn't be surprised if my kids were here. I wouldn't doubt that one bit. It is a tender work I get to do and I know that I have heavenly assistance constantly. I hope that they are the ones that help me.
The past several weeks I have especially loved this pictures. It captures the sweetness of Tatum soul. She is calm, and tender and her eyes are so wise. I wish so much that I could look into her eyes again. This picture helps me imagine.
I am so grateful, especially for the angels that abide, and guide, and help.
I'm sure they were there, too, and ARE there with you in your work. You bless so many lives, mine included. Love you, Heather.
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