Wednesday, April 11, 2012

Never ready

You are simply never ready to face a child dying. This year has been a whirlwind of playing nurse as much as mother, managing M's medical care, coordinating a sudden move, settling and unpacking into a new home, caring for the emotional and physical needs of seven siblings, trying to manage interpersonal relationships and logistics with caregivers we have added to the team to assist with M's needs, and simply remembering to breath sometimes.

Every once in awhile, I stop and lift my head up to realize that I am at risk of losing myself in this season. I'm really trying to not, but it's SO hard to juggle the needs of so many people and the fact that M is medically fragile now. In March, pollen nearly took his liver out. This month, it's been a cold that the entire family got and he is not recovering from at all.

I do have everyone settled now. All but two children are in public school. We are in a very tiny school district and all of the schools are fully informed of the home situation right now. They have been heartstoppingly supportive and compassionate towards our family. The kids are supported and loved and all are thriving in school. So different from the last experimental attempt to put the children in public school two years ago.

All children who need doctors and therapists have gotten hooked into the care they need. I even secured a dentist, the one thing I typically take ages to find when we move.

The last act M's Heptalogist did as his doctor was to call where we were moving and set the path in motion for M to walk into every shred of support services that were available for him and our family. Consequently, our first doctor's appointment here involved placing M in Palliative Care as well as signing his DNR orders. He was immediately referred to Hospice and a wrap-around program run by our health insurance company.

M has a nurse's aide that comes every morning to clean him and his room. Since night is the worst of his behaviors, the burden of managing this has finally been lifted from my shoulders. If he is placed in a school situation, I will lose part of this assistance, since hospice cannot get to the house earlier than 8am. However, it looks more and more like M will remain homebound at this point. His health is simply too fragile and rapidly deteriorating now.

A hospice nurse comes once a week to assess M and to make sure he has the equipment and pain meds he requires. The social worker calls every other week and comes out monthly. They are sending a male social worker for grief and trauma therapy for my oldest son every other week. As we need more support, they will provide it.

The wrap around service provider is sending an art therapist for one sibling who is struggling. We expect we'll need to have her come for other siblings in time as well. They are helping me try to get hippotherapy set up for M. They are also sending me for weekly massage therapy. All of this is paid for by our health insurance company. Apparently, the mentality up here is that the insurance company will save money if they provide social, emotional and therapeutic support in situations like ours rather than leaving us to drown and watching the stress destroy our health and our family.

I have a friend who moved with us and is an live-in nanny for now. She needed a safe place to land and a chance to restart her life with her kids. The house we found has a seperate living area for her little family, and I have constant support so I can do the things I need to be doing right now.

I have most of what I need to transfer my nursing license completed. I will submit that next week. I have already applied for a RN-BSN program. It's online except for the preceptorship portion. Given what is going on with our family right now, I felt it was vital that I not be tied to a brick and mortar program in this upcoming year.

I'm supposed to be taking a night a week off for myself, but I can't actually remember the last time I did that. Yesterday, as I sat in the waiting room for my massage, I realized I have not taken time to myself in so long I cannot remember it. Possibly I did so back in November, but if I did I don't remember when or what. I know I haven't since I got sick in December and then all hell broke loose immediately after Christmas.

I don't want to be here. I don't want to be watching over my son and waiting for him to die. I don't want to remember how he entered this family and the anger I felt when I realized how he entered this family. I just want to scoop him up and protect him, and I can't. This child, who has never had a stroke of good luck in his entire life, finally surrendered to attachment and bonding in January. As he lay in the hospital fighting off death, he reached out for me. He's still suffering from FAS, Autism and Attachment Disorder. However, I can tell when he gets really sick and scared now, because he reaches out for me in his fear and pain.

In the middle of all of this, my sister called me yesterday. She wrote a memoir about her chldhood that she wants to seek publication on. She wants me to write mine as well. I've alluded to the fact that where I found myself in this life was a direct result of the abuse and grooming of my childhood. I just haven't written specifically about it. When I started this blog, what was paramount in my thoughts was the marriage situation. However, my past is part of who I am. While it has always been my intention to sit down and write it someday, I intended to write M's story first. My sister would like for me to start with my story. She is a child abuse advocate and feels very strongly that our case study, two sisters of a Group B Personality Disordered mother, can make strong advocacy for children and for the reality that you CAN overcome. She feels it was seque into M's story later.

I'm really not sure what I'm going to do. Sis has a point. She has no idea about this blog. She has some guesses about what happened in my marriage but I never confirmed nor denied any of that for her. My sister sees men in black and white. I knew if I intended to restore my marriage, she would never be able to have a relationship with II again if she knew. I don't know that it was wrong to not tell her. I also don't know how I can write my history without including that amongst all of the other stuff. The tapestry of my life is not complete without all of it. I don't know if I'm ready to out myself and give details of my history, my marriage, my struggles and how hard I've fought to have a normal life in spite of all of that.

I tend to view every person as a tapestry. We all have different things woven into what makes us who we are. Some of us have some really poor elements woven into that tapestry. However, woven well, some of the ugliest and cheapest thread can contribute to a masterpiece that is simply beautiful. We are who we are. Our histories are part of that but don't determine any of us. Most of the time, I prefer to not dwell on all of the elements that compromise who I am. My sister is asking me to do exactly that, and to do it while facing what is happening to my son.

I don't know the answer. I just don't know yet.

1 comment:

  1. Oh, Jo! I have continued to think of you so often over the last year. I'm so glad to hear about all the support services that have been set up for your family and that you're finally, finally getting the chance to take care of yourself in the midst of it all. Maybe it *is* time to start writing your story. Or, maybe, it's time for you to rest a bit. Only you know.