[NOTE: I should explain that the events recorded here happened a couple of weeks ago. These notes were prepared during the “storm” (what I later refer to as “hell week”) and I have chosen to keep the present tense because it more closely reflects how I felt at the time and my response. ]
Through the years our daughter has lived in St. Pete I’ve been asked many times if I thought she would ever relocate closer to home. My answer has consistently been, “She loves St. Pete; I don’t think she will ever leave.” Yesterday (Wednesday, 5/24) when I went to the hospital the immediate conversation was about moving somewhere closer to their families. Our daughter said she didn’t think she could stay here and wanted to start over again with a clean slate in a new place. She further said “this has changed our perspective about a lot of things.” Maybe that’s what Carter was here to do. We are all certainly more sensitive to how fragile life is and how quickly all of that can change. Maybe Carter was sent to open our eyes and see things with a different point of view.
We’ve made it to Thursday evening; beaten, worn, and frazzled but we are here at least in some sort of condition. All of the family arrived, some late last night. So around lunchtime today the entire family met with the entire care-giving staff to let everyone hear where we are and the options available to Carter’s mom and dad (if you can even call them options). The bottom line was really they could discharge him, but would still have to declare him brain dead and send him home on a ventilator with a feeding tube. Or the family (Mom and Dad) could opt to withdraw any further care and spend whatever time Carter had left with him. They chose the latter and sometime around 3:00 eastern time the ventilator tube was removed and all of the wires and monitors. We all got to hold him and through the tears see his beautiful face for the last time. He was pronounced dead Thursday 5/25 at 3:08 pm; he died peacefully in his mother’s arms but the rest of us were total wrecks. I cannot imagine what losing a child is like, but I saw the anguish in my daughter’s face. Someone told us grandparents’ grief is doubled because you are grieving the loss of a grandchild and the devastation of your own child. Then my mother and daddy pointed out to me that it must be tripled for great-grandparents because they see yet another layer of grief in their family. I guess that’s the case; they were unable to make the long trip to be here, but I talked to them several times each day and realized the pain they were experiencing. Mother said “only a mother would know what our daughter is experiencing”. Mama and Daddy never got to meet or see their newest great-grandson. I personally don’t think of grandparents’ grief as doubled or great-grandparents tripled; I can think of nothing worse on earth than losing a child; but I will admit that there are other facets to the grieving process for grandparents and great-grandparents. The image of my daughter’s face holding her lifeless son will forever be burned in my memory and has been the source of many of my “come aparts” over the past two weeks.
The medical examiner required an autopsy, even though the parents hoped that they wouldn’t. As soon as the autopsy is complete Carter will be cremated and his ashes scattered in Clam Bayou, a nature preserve near their house where they used to take walks. We will float 111 flower blossoms, white carnations, one for each day of Carter’s life into the water. We had hoped to do that Saturday but the schedule is uncertain at this time.
I mentioned meeting with the medical team yesterday and my thoughts would be incomplete without talking more about them. Carter was born and died in The Johns Hopkins All Childrens’ Hospital in downtown St. Pete. His care staff this week was led by Dr. Sochet, but there were many others deeply involved in taking care of Carter. Part of that team focused on taking care of Mom and Dad and the entire family. I had never heard of palliative care but I learned quickly to appreciate what they do. They provide relief from symptoms for the patient, spend time explaining choices and help the patient and family carry on with everyday life. This team spent a lot of time over the three days I observed, with Carter’s mom and dad as well as the rest of the family. The entire staff, Dr. Sochet, the nurses and technicians, and the palliative care team (which includes Father Tom, the hospital chaplain) were highly skilled professionals, and extremely compassionate individuals. I was very impressed with the hospital when Carter was born and in the NICU, but the events of this week elevated my opinion even more. I just simply cannot say enough positive things about them.
Maybe our next step toward exiting the abyss is to be grateful. It doesn’t seem like there’s much to be thankful for right now, but I am thankful for the team discussed above who helped us through the most difficult time I’ve seen in my 63 years. I’m also thankful for the hundreds of people who have prayed for us, sent food, sent flowers and all of the other gestures of love and kindness, many who don’t even know us. I’m grateful for everyone who contributed to Carter’s GoFundMe account. This hospital and staff are wonderful, but it doesn’t take long to rack up a staggering medical bill and the friends who set up the account and all who have contributed may never know how much they have helped. Our daughter and son-in-law have enough on their minds without trying to figure out how to pay the hospital bill.
I’m also thankful for the time we did have with little Carter. He taught me several things in his short time with us. He was a fighter; during his days in the NICU he would almost make the five days without a heart rate drop only to have another one and start the clock over. Tough on the parents but this little guy kept plugging away until he made it. Carter reinforced Jimmy V’s ESPY speech to not “ever, ever give up”. Next he taught me to love more and love more deeply; he was one of those little babies that you just want to pick up and kiss on. Maybe I have been lax in showing my family how much I love them; little Carter showed me that I should not do that. Life is precious, but it is also fragile and I don’t need to let a day go by without letting my family know how much I love them. And as I’ve mentioned Carter showed me how one innocent little baby can impact so many people without ever meeting any of them. With today’s technology Carter’s pictures were seen thousands of miles away and I believe his untimely death has shaken many of those people to realize every day is a gift from God.
It is now Friday night of “hell week” and we seem to be stuck in a holding pattern. The mortuary was not able to get Carter’s body from the Medical Examiner’s office today. All of those decisions were not finalized until after hours. The plan was to scatter his ashes tomorrow, but unless the mortuary can somehow pick him up tomorrow, that won’t happen. It is a holiday weekend which would push everything to Tuesday, at best. Several family members here will have to return to jobs and make flight schedules early next week. I guess another thing Carter has taught me (I knew it but he has reinforced it) is life seldom goes according to our plan. That is not to say we shouldn’t make plans; just realize that things may change and require a new plan and don’t get all bent out of shape when life changes. Carter was a pretty laid –back little fellow; he would certainly let you know if he needed something or was hurting. But he was usually pretty happy especially if his mom or dad was holding him.
We are functioning, however, in some capacity but sometimes a wave of grief just comes from nowhere and rolls over us. We have no control over when or where this will occur. It happened to me driving on the expressway today and it’s hard to drive looking through a sea of tears. I now have a better understanding of Horatio Spafford’s line “when sorrows like sea billows roll” from the old hymn It is Well. We face-timed with our pastor in Huntsville today. He is a calming, soothing man anyway and we just chatted a few minutes and he prayed. I believe it helped both of us. He mentioned the possibility of having a memorial service at our church when we return home. We had not thought about that and didn’t really have an answer at the time so we are considering it. I need to see if Carter’s mom and dad are ok with it, but many of our friends at home have been so helpful with kind words and prayers. None of these dear people ever met Carter; it would be nice to have a slide show of photos and a little story to go along with it.
Let me go back to Job. God speaks out of the storm and questions Job. This inquisition in Chs 38-39 never acknowledges or mentions the trouble Job has had. God knew all along that Job was an upright man and was blameless. Job wanted to know why all of this happened. He thought God owed him an explanation. Job had done nothing wrong and there was nothing he could have done to prevent all that happened to him. God never answers Job’s “why”. Maybe this is another small step out of the abyss. Our daughter mentioned to her mother that she felt like such a failure. But I saw firsthand what a great mother she was to Carter; I watched her love him, tend to his needs, soothe his discomforts and unhappy moments. I also saw how much his daddy loved him and how he too tended to Carter’s needs. I know they will come up with a thousand “what ifs” and will feel like if they could have done something differently they would still have Carter. I don’t know how to stop that thought train, but the fact is they did what every parent does. They loved and took care of their baby, and made decisions that they felt were in his best interest. The medical team spent a lot of time trying to answer the “how” question, and the “what” question. I think they got the “how”- his brain was without oxygen too long. The “what” question- what caused it- is and will forever be unanswered definitely. Likewise, there is no answer for the “why” question. It is futile to spend time thinking about it; but what we can do is think about what we learned from Carter, how he has changed our thinking, and how we implement those lessons in the future.
carterscues 