Today was a relaxing day, the first in a while. As much as one can get "used" to this, we were calm and settled. We had good solid feedings with no spit ups, many a wet diaper, and a lot of physical movement - which always makes us happy. We even increased her amount per feed with no problem. I'm excited about that because I want her to start gaining more, I think she expends a lot of energy in repair.
We had our second visit with the Reiki specialist today. Much like last week, she was active - even more so today. She just seemed more responsive and not by mere reflex. We had her lying on her back, her legs and arms moved easily with purpose, her eyes were brighter and appeared to scan the room. I wouldn't be able to tell if she was actually focusing on something, but each time she makes an effort we are encouraged that she is going to grow and improve. Much the opposite of what one typically associates with Hospice.
As we have come to learn through stories anecdotal and otherwise, many people who sort of wind up in Hospice care actually "graduate". We want nothing more than to see our Delaney make it to this graduation, and many more. She's got a lot of learning to do and so many adventures to take. Each time she breathes a little easier and shows us more of the fight that she has in her, the more we are encouraged and inspired. Lindsay and I are her biggest cheerleaders, but I want her to be able to know all of the hundreds, and now, thousands of people who are cheering along with us. One day I want her to know that she made it though this time with help from people who may never meet her face to face, but they were so touched by her story that they were compelled to be a part of it.
I made some more contacts today with some alternative therapies, doctors for second opinions, and more help to support Lindsay and I to be as strong as we can be. I have some doctors at U of M Mott that I will get in touch with tomorrow. We also have a Feldenkrais practitioner that we will be contacting tomorrow. Not sure how quickly we will be able to get that going but in the mean time we got a great email from an old High School friend who is a Psychologist. She had many simple suggestions on some very good exercises we could do to stimulate all of Delaney's senses.
In terms if respite, Lindsay's Dad arrived this afternoon, just to stay the night. He's an RN and helped us with the first few days if learning how to manage home care. This kind of help is peace of mind to know that we can take a break and step away for even an hour. Coincidentally, we were contacted by another RN who offered this kind of help and we will definitely be taking her up on that.
This gift of time is such a huge part of our ability to cope. Moreover, Delaney's ability to overcome. I recall when we were in the hospital and being hit with blow after blow, this domino effect of diagnoses. I broke down at one point sobbing and said, "She just needs time...". We felt things were moving so quickly, that even we couldn't keep up let alone our poor helpless child. We kept asking, "When is she going to get a break?" It felt so much like a nightmare when you want and need to get away but find your self unable to run, unable to cry out for help; or if you did it only manifested as a quiet whimper.
As scary as it was to hear that the hospital couldn't provide anymore help and that we would be going home to Hospice care, ironically it has turned out to be the best medicine. Further, we are pursuing things that we wouldn't have the freedom to use as completely in the hospital as we can at home. Ultimately, Delaney is our child and our responsibility to care for. As long as all of the modern medicine has truly done whatever it can, we will take it from here. As parents in the hospital it felt helpless. We had to give over the power to those with the expertise. In an odd way, that power has now been returned to us. Lindsay and I have a lot of love to give.
Since her Dad (and youngest sister) were here to help out this evening. Lindsay and I were able to do something we haven't been able to do in quite a while. We went out to dinner. It wasn't easy, and as time wore on we grew increasingly anxious to return home but the time away was really valuable. We always have really good communication, but being able to separate from the intensity of caretaking allowed us to have some deeper conversation about what has been going on in our hearts and minds. We talked about our fears and hopes, about extended family and friends and their role in all of this. We also talked a lot about faith.
You can't help but ask a lot of "Why" questions when tragedy strikes at a family. We are no different, but what we found tonight is that we differ in some of our expectations about how to cope with the why of it all. We talked about the importance of recognizing where Delaney truly is in her recovery and balancing that with what and where we want her to be. All the while we have to be able to mourn the loss of where she was before all of this happened. There are some really big losses here. There's the loss of what was, and yet there is also the loss of what we had 'expected to be'.
Our efforts emotionally and spiritually need to be directed towards allowing events to unfold, without prejudice or expectation. However, we fervently hope and pray for all of those positive things that we want for Delaney. In turn, keeping a balance of all of those things will help us to encourage the growth and development that Delaney is capable of and maintaining our positition to "see" it and respond to it appropriately without being clouded to the truth.
I leave you with our hope that you will cotinue to pray for the best possible outcome, our ability to allow the events to unfold, while holding our hope alive for all the best things for our daughter.
B & L & d