Wednesday, July 25, 2012

Individual notes of pain

Trying to remember how to live is so hard sometimes. Day to day, I focus on the children so that I don't have to think too hard. However, S is having some significant health scares and sometimes even focusing on the children is not so easy to manage. Even so, checking each of the children at least twice a day to make sure they are doing okay is part of what keeps me from being numb and simply wandering the house aimlessly every day.

Hospice, it seems, is eager to simply drop our services. We're supposed to get four weeks of services after Micah's death. yet we've barely reached two weeks and it appears they are pulling back rapidly. That leaves me cataloguing each child and their needs to determine if losing the services through Hospice is going to leave each child vunerable or they are stable at the moment.

A's therapist is coming this evening for the last time. So, I have to assess if this will be enough therapy for A, or do I need to set up a long-term therapist. My insinct is that A is okay right now. He's had the most losses in his life, and he's lost siblings before. So, he has experience walking this path and understands that it does get better. He also has lots of distractions that the others don't have. He's deep in soccer training already, and has opportunities to be with friends, coaches and school personnel. There is a support group Hopsice runs for teens who have lost someone close to them. He is resistive to going, but I really think if I can encourage him to go, and talk with his Guidance counselor and coaches to just keep an eye on him this fall, that will probably be sufficient for his needs for now.

S has ongoing therapy. Honestly, due to his own losses and history, he probably needs weekly therapy for now. However, the system up here is not like it was in our last state. When E came out of inpatient, she was placed in four times per week at-home therapy initially. S would greately benefit from that. It's just not available up here. This state provides better services across the board to all teens struggling, but less intensive for individuals who meet the threshold of really struggling. So, I would guess he'll end up in every other week therapy, since I think that's about as frequent as his outpatient therapist can fit him in. There is a psychologist who goes to the high school every Friday to provide services to teens there as well. So, I'm intending to talk to his guidance counselor about the possibility of having him see her on the off weeks of his regular therapist this fall. He needs to grieve the loss of a brother he just barely knew. However, he needs to grieve a lot more than that. He will also need help learning healthy coping skills and how to handle the health issues he is still facing.

E also has ongoing therapy. However, yesterday the floodgates opened up and she is extremely lost in her grief right now. She had refused to talk about it and was trying very hard to not think about it. She said it was just too painful. Instead, she was viciously attacking her siblings and leaving them in tears. I finally had to ban her from having interactions with any of them before she would talk and let her pain out. Of course, E struggles with obssessing over things and strong grief is definitely something she obssesses over. So, while she is now talking and letting it out, she is as overwhelmed as she feared she would be if she did so. I have an email into our case manager with the wrap-around services in hope they can help me increase her therapy for now specifically to help her with grief counseling. It's the only thing I can think to help her right now.

C has been having therapy with an art therapist for several months now. I never quite understood how art therapy worked for older children until I saw it in action with C. I am floored at how well he responds to the medium and his therapist specifically. He is very sad. There are nights he spends in our room half the night, or on the couches because he cannot bring himself to sleep in his room. However, he is managing it. He mostly hides on his computer games or his Kindle, reading Harry Potter books. However, last night he asked if he can begin his homeschooling year now. So, we will start his schooling for the year today and work as much or as little as he wants each day now.

Ch is hiding. He doesn't talk much and he doesn't really join the family much right now. He has a history of attachment disorder and I worry a great deal that if he blocks his family out, he will fall back into that old insecurity. I made an effort to reaach out to him twice every day, to hug him, to talk with him, to tell him that I love him. I am setting him up with grief counseling to help him process what has happened. I have also made the decision to enroll him into public school for this year. I felt like he needed one last year to finish his ESL struggles. However, Ch is extremely extroverted. He found out R would be going to the middle school alone and specifically requested he be allowed to go with his little sister to keep an eye on her and let her feel safer with her big brother there. So, I have decided it would be best for him to have an opportunity to step out of this house and be a normal kid now. He's apprehensive but excited about this change. I just hope getting him a private therapist will help him with the deep pain I can see he is feeling and afraid to touch right now.

R is an enigma to me. On the one hand, she is responding quite well to the grief counseling through hospice. However, we lose that in two weeks, and they are already trying to withdrawal services now. On the other hand, I'm not certain she will tell me when she starts to struggle. She is more likely hold it in until she cannot anymore and explode with pent up emotions. She is also incredibly shy, so it takes time for her to warm up to anyway. I'm uncertain what avenue we need to pursue for working with her in the upcoming months. However, there was only five months between her and Micah, so the one thing I am certain of is that this is deeply painful for this child and she likely feels quite lost right now. She has a tendency to fear that she gets lost in the chaos of this large family, and it is very important to be proactive with her needs. I have an email into our case worker with our wrap-around services regarding her needs specifically. Perhaps she would do best to be added to the art therapy of her younger siblings, or best to get her an individual therapist of some sort. Something needs to be put in place for her before Hospice is completely done with the kids. If not, she may be the one who feels guilty and lost for years now with grief she was not able to process in a healthy avenue.

L is a firecracker. She is extremely verbal and has been processing all over II and I. This is the child who wants to know if there is matter in heaven. If things must have weight and take up space to be matter, then does matter exist in heaven? She wants to know how you get from your body to heaven. Last week, she declared that if she killed herself then she could go to heaven to be with Micah. She was Micah's buddy. She was ten months when we went out to see him the first time. She went with us at 15 months to bring him home. She was his playmate, his soulmate and his best friend. The last time he was in the hospital, she came to stay with us. She considered it her job to be the BIG sister to Micah his entire life. He always thought she was the big sister just as much as she did. Where there was Micah, there was L watching over him, guiding him and loving him. She is also refusing to participate with her art therapy now. She won't say why she refuses but she doesn't want to talk to her therapist. We finally talked her into just doing the art with R there to comfort her (R adores arts and crafts so she was thrilled to be included and we might decide it is best for both girls for her to be a part of the art therapy at this point). However, L is openly declaring she will do the art but she WILL NOT TALK while she does it. We'll see if that holds true for long. This is the child who will refuse her therapy but turn around and act possessed in anger later. She needs her therapy, and she needs to cooperate with it. However, we will not and cannot force her. We can only continue to provide her with the opportunity to utilize the therapy.

J is my baby. He loved Micah deeply. Micah had this habit with his autism that he would latch onto a child and mirror their developmental progress until they hit 4 years old. Once they were four, he couldn't develop beyond that point, so he would seek another child to latch onto. He latched onto L when he came home and she was 15 months. However, he couldn't progress beyond 4, and she was extremely advanced in her development. By the time she was 2.5, he was lagging behind her. By the time J was one, Micah was latched onto him instead of L. We used to wonder what Micah was going to do when J hit four and Micah either had to continue to develop finally, or was lost without someone to mirror. We never got there. He spent 2.5 years of J's life modeling and mirroring J's development. That made them best friends. When Micah was sick, it was J who would lay next to him and comfort him. He's only 3.5 now. I have some memories of that age, but II had none. I fear J will not remember his brother. I also fear he lacks the development and words to fully process what has happened. When he does talk about Micah, he uses fake tears. It's in there, but he doesn't know how to work with it. Thankfully, he also responds marvelously well to his art therapy. Unlike L, he is not resistive to this process. Instead, he happily grapped his therapist by her hand and led her to the dining room, where he is in there now nattering her head off. I believe with continued art therapy, he will process. I just don't know if he will hold genuine memories of his brother, or only those we tell him as he grows up. It was my deepest wish that Micah would have lived long enough for little J to remember him in his own right, but we had no control over that.

I'm very good at balancing the children and their needs. People remark that I know so many children so intimately and so well. It's just who I am. Figuring out how II and I navigate through this murky pain......I'm not as good at that part. The only thing I can say is that we continue to cling to each other through this. That seems to be the one thing we both grasp, that we should not do this alone. When one of us has a horrible day and struggles, the other seems to be more stable and can hold them up. I figure if we both fall down, we'll cling and hold each other throughour tears. We have the option of a support group through hospice, but niether of us are sure we are ready to try it yet. For now, we just focus on the memorial we are holding to say good-bye to Micah this weekend, and our other eight children who desperately need us. That is all either of us seems to be able to do for now.

Sunday, July 22, 2012

The elusive mystery

I cannot sleep anymore. During the day, I am functioning fine. I have things to occupy myself. I have children who desperately need me to taking crae of them. At least twice every day, I check in with each of these children individually. Well, I only check in with S once because I can only call during phone priviledge hours. However, I am aware that he has a full staff of individuals keeping constant eye on him and his grief processes right now. The other seven children, I check with them twice a day.

I cuddle children who need cuddled. I talk with those who need to talk. We remember Micah. Sometimes we talk about heaven and the afterlife. Sometimes we talk about the future. Sometimes, we just sit and someone cries (sometimes them and sometimes me). In addition to this, I have been cleaning and purging my house. Micah took SOO much of our energy and focus, but he also took much of the space in this house. Bit by bit, I move things out. The children want me to move much faster, but it already feels faster than I'm comfortable with, so I tell them to slow down. I am also preparing to be descended upon by nearly two dozen friends and family who will stay here for Micah's Celebration.

So, during the day, I have plenty of things to distract me from my grief and emptiness reaching a crescendo that I cannot manage. I sit and space out quite often, but there is always something I need to move onto, something that must be done, something I must given atention to. There is never an end to the need to live during the day now.

It's the nights that are different. In the nights, there are no pressing needs to attend to. The children are sleeping. Occassionally one shows up in our bed, but it's not every night and all they require is for Daddy to cuddle them. Daddy has done the nighttime parenting our entire our marriage, so they don't even look to me for that comfort at night. I cannot do improvement projects. I cannot purge the house in the night. The world is still. So, I try to conquer the nights.

It's not working. I cannot sleep anymore. I toss and I turn and ultimately I wake up in panic because I forgott to take care of Micah that day. Sometimes, I can calm the panic and try to go back to sleep. Sometimes, I cannot and I give up on sleep entirely. Whatever I do, it doesn't make the nights any easier.

My sister suggested I try high dose melatonin with high dose benadryl. She forgot to warn me that melatonin and alcohol should never be mixed. So, the experiment was an abyssmal failure. High is only a polite word to describe the reaction in trying to sleep last night. Prior to the benadryl, I was completely incompetent. Afterward, I actually have memory losses, but no knowledge of actual better sleep.

Tomorrow, I am calling my doctor. I need something to help me sleep. Right now, I can function. My grief is present and palpable but not dysfunctional. I fear if I coninue to be as sleep deprived as I am, I will shut down. So, I will ask my doctor what my options are (and refrain from asking my pediatrician sister again who so clearly forgot to warn me that as a non-pediatric patient I needed to abstain from the alcohol with the melatonin). I don't know what relief he can offer me. I simply know that I must sleep or I will not function much longer.

Friday, July 20, 2012

Stupid Sesame Street

The grief counselor with hospice sent a Sesame Street movie called "When Families Grieve" for my kids to watch.

I am now watching Elmo and his cousin cry about losing the cousin's father, Elmo's Uncle Jack. My middle age kids are fascinated and barely moving. The littles are refusing to be quiet and actually watch.

I am grateful that my littles have an art therapist who works with our wrap-around program. That means a large portion of her clientile are dealing with a sibling with a life-threatening illness. They don't all die, but they are life-threatening. So, she will be here next week and will work with the little two in processing their grief.

Right now, L gets angry when we push too much talking about Micah and missing him. J is totally clueless. He feels grief.....but he is three and really cannot express it well. The Sesame Street movie was great for the middles who watched it. L just got angrier and angrier at the whole thing. Sigh. I would say she's okay, but she's having a LOT of tantruming behaviors. Last night, she was still kicking and raging past 10pm. The night before she came into our bed and peed it. She hasn't had a nighttime accident in a year but she did that night.

My children keep trying to move on as if nothing is happening, yet there is so much pain right now that it is palpable. The decision to put all but C into school was actually not about their grief but mine. However, I cannot help but hope that the routine, the getting around other kids, and the opportunity have school employees who can check in with them and support them can only help them right now. I couldn't do that if we were still in that horrible, inner-city ghetto district we were in the last time I tried putting kids into school. This district is SO much different than that past experience. This district is small and has been so respectful of our kids and our unique family situation. When we sent in the homeschool decleration and C was the only one on it, when they were expecting three kids to be on it, they actually called us to make certain it wasn't a typo. There was no mention that it was late because we were dealing with Micah dying.

I'm just so afraid that I will miss anyone who isn't a squeaky wheel. At least twice every day, I personally check in with each and every child right now. I take notes for therapists. I contact hospice when I feel the pain becomes overwhelming. We still have three weeks of hospice services before we lose the in-home services Micah allowed us to qualify for. What taxpayers decided four weeks were sufficient is beyond me, but that's the reality. All but two of the kids either already have or in process of having therapy services either individually, for those with mental health issues that complicate this, or through our wrap-around program therapy services. Of those two, R is still responding well to the hospice services. I told our case manager with the wrap-around program that I want her with a private therapist when she loses hospice. That only leaves A. I offered him the hospice teen support group. Thus far, he's been resistive to services outside of hospice. He's been getting one-on-one therapy from a hospice social worker. He likes that therapist. I just have to convince him to keep having someone to check in with at least once a month when he loses that therapist in three weeks. Yet, I still fear I will forget someone, or miss seeing how great their needs are right now.

As for me, I haven't reached the point where I can think about services for me. The wrap-around program provides me with weekly massage therapy. I searched online without luck for a support group for parents who have lost children and not suffered miscarriages. I did find the local hospice support group and I'm going to go try it this Saturday. II wants to go with me. Right now, I don't feel like I need individual therapy per se. I just feel like I need to find people who have been through this and tended to their children while walking through their own grief. I don't feel like my grief is dysfunctional. I am supposed to hurt. I am supposed to sometimes just sit down and cry. I'm supposed to be moved to bawling by a stupid sesame street character right now. I'm supposed to have trouble sleeping, and wake up in a panic that I didn't take care of Micah today. All of what I am dealing with is normal. I cannot walk through this grief any faster than I have walked through grief in the past. I have to walk this path. It feels so much different than other grief processes I have endured in the past. It's different than losing beloved grandparents, which I have endured three times now. It's different than losing adopted sisters who left my family as if dead. It's different from being raped, or giving a child up for adoption. It's different than three miscarriages, though one of those was a second trimester loss. It's different, though most similiar, to when II betrayed me and nearly destroyed our marriage. that grief I was alone and did not trust him. In this grief, we are together, hurting but holding onto each other somehow. So I focus on my children because that is something I know HOW to do right now. I still feel so keenly the words whispered to my heart when I laid Micah back down, "you have done all you can for this child, now tend to the living."

Fragments of grief

L and J have declared that when it rains, it is Micah saying hello from heaven. It's rained three times since he left us.

Two nights ago, my father called to tell me my brother got an internship. It's the first step in him becoming a professional athlete and getting coporate sponsorship. Apparently, sports related companies hire athletes for a short internship and pay them sufficienttly to sustain their basic needs for much longer than the short period of time. My brother will work for one week and should earn enough funds to cover most of his living costs for the fall, since he cannot run on the US Men's track team this year and work in the off-season. The company he got his internship with? Gatorade. I laughed my head off. Yesterday, I made sure to call my brother and tell him about Micah's obssession with Gatorade and how it was the only thing he drank in his last 24 hours. It made my brother cry.

My sister told me she is not coming to Micah's Celebration. I'm not surprised. She went into pediatrics because she hates death and figured she could avoid it by working with kids. I was terrified to tell her we were adopting a terminal child because of this. When I did tell her, her response was to inform me she would not be getting attached to this child. I think she's afraid to admit she got VERY attached to Micah. She'll hide and cry, but she won't come say good-bye to him. She didn't stay for our grandmother's funeral either and grandma was essentially her own mother in all but name. I know it's not personal.

My other adult brother wants to come. He's trying to make it happen. However, he doesn't think he can. I asked him to go on the 28th and take his boys to the park. I told him to release a red balloon to honor their cousin. He says he will do that for me. His older son is Micah's age. I know this has hit him hard.

We have a contractor doing work on our house. He's been doing it for six weeks now. The primary problem is that the work should have taken a week but he doesn't believe in coming more than 2-3 days in any given week and he never works more than four hours. He was coming last Thursday and I asked his wife to please NOT be doing construction that day. I told her to send him Friday. He showed up Tuesday. Tuesday he *promised* us he would be done that day. He showed back up yesterday. He stayed 15 minutes and left. Then, we got a call from the landlord. The contractor complained that he absolutely cannot work around our children's messes and offered to refund funds to the landlord. After blowing up, II took a picture of the three rooms the contractor claims were so messy he couldn't work on them. A's room was messy. It took II ten minutes to get it cleaned up when the conractor got here. The other rooms were toally empty. Supposedly, the guy is going to come today and stay until he gets the job done. The real issue is that he doesn't want to be here anymore, not after Micah died. He should have just been honest and not tried to pin that on US. As the landlord said when II texted him pictures of the three rooms, pictures don't lie. I'm sorry my loss makes him uncomfortable and inconveniences him. It's really not my problem though. He needs to finish the work and get OUT. He's already forced my family to suffer in his construction zone while their brother died. I think that's more than enough insult and injury for these kids to endure.

Last night, I meant to release three red balloons for my baby. We couldn't individual balloons so II bought a helium tank. He bought a package of a dozen red balloons, thinking he would use the rest for the Celebration. However, all of the children saw what we were doing. I did release three balloons to send to heaven. Everyone relased balloons as well, all 12 that were in the package. Micah would have liked that. He always loved releasing his balloons and watching them float away. He didn't like that it meant he had no balloon afterward, but still the kiddo had no impulse control so he would tantrum when he realized what he did but never stopped releasing the balloons just the same.

Just before bed last night, L informed me that if she killed herself, she could go to heaven and be with Micah. Um......yeah. II and I both talked with her about how Micah will still be there and it would be better to wait until it's the right time that she is supposed to die. That if she killed herself, everyone left behind would be even sadder. I made a mental note to mention this to her art therapist before she comes again so she can focus on this topid a bit and see if she can get L to a place where she is NOT contemplating killing herself.

Just before bed, II got an email from Micah's Palliative Care doctor. She is also a Specialist in another field. Specifically, she is now S's Specialist. She's told us to take things one step at a time for the overwhelming health scare that we were notified on S 23 hours afer Micah died. Her email to want to contact the primary doctor personally and to make certain we're moving as fast as possible for futher testing for S is NOT helping me simply take one step at a time on this new nightmare. I cannot give energy to this fear right now. Everything is already set up to follow through and I have to honor the place where I can grieve Micah before I enter this fight emotionally. For now, I'm taking peace that both the primary and the specialist have this one. All but one of the tests will occur next week. The specialist already has copies of the tests already done and if she's wanting to contact the primary personally, then I suspect she wants the additional test results gotten directly to her as soon as the results are back. Only when we know for certain what we are facing will I devote my emotional energy into this new issue.

Thursday, July 19, 2012

I love you

M heard this song in January and fell in love with it. Profoundly autistic, he had never learned how to express his emotions before he heard this song. He used this song to teach himself how to tell me that he loved me. Everytime the chorus would play, he would pause his dancing to say, "I love you, mommy!"

I knew for years that M loved me to the best of his ability to love anyone. I knew his autism left him trapped in a mind and body that would never know how to properly interact with the world around him, a body that would shut down with strong emotions of any sort. I accepted that reality. That in the end he learned how to say he loved me was a bonus I wasn't expecting.

It was this song he insisted I switch my phone to at 2:30 in the morning when I could not sing Puff without crying (stupid last verse about little boys don't stay little forever). I knew it was his way of telling me that he loved me as he left this earth.

This morning, I headed out for my walk. I promised I would walk slowly. I have discovered that my entire body simply HURTS now. I know it's a manifestation of my internal pain. However, every walk since he left has been painful and a tremendous struggle. Today, I assumed I would simply walk at whatever pace my body needed to go. What mattered was that I walk, not that I do so gloriously. My ankle burned in the old injury. My calves groaned in the effort. Yet, I walked. I hurt so badly I had to pause and sit on a tree-stump at my turn-around point. As I headed home, M's song started to play in my shuffle list.

I knew my son was reminding me that he still loves me, though he is no longer here to be with me. I love him so much. I miss him so much.

One week ago he left me. I asked II to stay home today. I'm not sure I can face this first milestone alone yet. Tonight, I'm going to buy some red helium balloons and release them. M always loved helium balloons. What he hated was that he didn't have anymore to play with once he 'accidentally' let them loose. Perhaps I will mark every hard milestone this way. I don't know. I know that it feels right to celebrate his spirit today this way. We never talked about what came after M was gone. I don't know where or how I move forward from here. I just know today I miss my son and I can barely fathom that it's been a whole week since he left him for the last time.

Wednesday, July 18, 2012

Today was a bad day

I don't know what made today so much worse than every other day so far.

Maybe it's because II and I mistakenly decided we would sleep on the couches, stay in the air conditioning, and try to avoid the heat of our bedroom. Instead, we both slep fitfully and not fully. We haven't been apart since we lost him, and we both seem to need each other to cling to especially right now in our pain.

Maybe it's because I had to address safety and medical concerns on S today. I had to put my mamabear hat on and advocate for this child who is rapidly trying to self-implode in his grief and his frustration at being disconnected with his family in that grief.

Maybe it's because I found out that my hopes to start my BSN this fall has completely fallen apart. I feel like I'm drifting and despite all of my efforts it's not a possiblity for the fall, all because of a disorganized nursing program and a downright arrogant nursing director who refuses to be reasonable with my requests.

Maybe it's because II went to pick up the death certificates yesterday and was surprised when the funeral home brought out a sealed cardboard box. It has my son's name on it. I know what it is. I just cannot bring myself to give any energy to processing it right now.

Maybe it's because I decided a year ago that I would put his ashes into a concrete Mickey Mouse statue. Do you want to know how hard it is to find someone willing to do a concrete Mickey Mouse statue? It's impossible. Disney holds their copyright laws very tightly. While it's legally permissible to use something for personal use and not violate copyrights, no one is willing to trust our word that this is personal use only. I did finally find a professional artist, whose best friend is as professional sculpture. Together, they have agreed they will make a scuplture for me, pour a latex mold and then allow me to have the latex mold so we can make our own concrete statue. In this way, if something ever happens to this one, we can recast it ourselves. Accomplshing that took a lot of emotional energy and it's not done yet.

Yesterday, I was productive. I got cleaning and organizing done. I spent lots of time with the kids. I sorted through M's clothes. Today, the house feels empty. The children keep pushing me to purge and clear his stuff. I'm not ready, but I recognize they are ready and they need me to honor their request on this one. It just drains me to do it.

Mostly though, I just woke up and felt empty today. My house was quiet when it should not be. There was no little boy who required constant attention, supervision and medical care. There were no protests that he didn't want to do things, no hum of medical equipment. My children were calm. They were sedate. Not one of them, much less all of them combined, require the level of care their brother required every day of his life. It was too quiet and I was left alone with my own thoughts. So, I had a bad day. I remember him. I try to wrap my mind around the finality of this, and I am not sure I can do it yet. I just want my baby back. I want to hold him in my arms and listen to him whine about everything he doesn't like in life. I'll never get that again, but I'm not sure I'll stop yearning for it either.

It is finished

This post is rapidly becoming the mountain I cannot climb instead of the fresh memory I wanted to hold onto as it was meant to be.

In the end, M died as he lived. He did it his way.

June 20th, M got a common, ordinary cold. He was due to start his IV antibiotics first of July, so I didn't think it was a big deal. By the next day, he was in very bad shape, very fast. We discussed starting his IVs early, but I really don't think we realized just how bad this was. It was a cold. His lungs were FINE the week before. It's his liver that has been end-stage, not his lungs. We decided we would start oral antibiotics to tide him over a week and increase his vest treatments to 3-4 times per day.

For a little while, it worked. He got better, it seemed. He was cranky. He was fighting all our efforts to work with him, but he was breathing better again.

By the 28th, we knew the orals were not doing enough good, but still we were starting the IVs on Monday so all would be fine. II and I discussed that while we were certain we would get him through *this* crisis, we were worried that he might be too fragile and weak to make it to his next round of IVs that were supposed to be in October. Never did we entertain the possiblity that the IVs wouldn't work this time. We simply assumed they would do what they have done in the past and clear his lungs.

M started his IVs on July 2nd. By July 5th, it was clear he was not getting better. It was a holiday week, which made everything odd around scheduling these at home instead of in the hospital. I had assumed when hospice drew the labs on Tuesday, they would call us if the antibiotic levels were not where they needed to be. The doctor didn't call and for a day, I thought they were fine. Instead, they call on the 5th to get the levels changed.

The next two days were a blur of activity, trying to get things shifted to help M feel better and breath better. Throughout all of this, M was raging. He was attacking people. He was trying to stop every treatment we ran, from the simpliest feeding to the IVs and everything in between. On Saturday, we knew we had lost the battle. His oxygen levels dropped into the upper 70s and we could not get them up. M had fought us to not wear the oxygen tubing in his nose and we put our feet down that he WOULD wear the oxygen. We realized he was aggitated and fighting because he was drowning. The ONE thing we swore we would never let happen to him.

Saturday evening, we made a frantic hail mary phone call to M's Cystic Fibrosis clinic. The antibiotics were not working. We could not wait until Monday to do something. He was sick. He couldn't breath. This was not his liver.

The phone call was returned by the director of the clinic, who happened to be on-call for the weekend. Based upon what we were seeing, he felt it was very likely that M had finally reached end-stage lung disease and not merely end-stage liver disease as he had been since January. He was willing to try several things to help us, but he warned us that they might not work at all. While we had reached a point in M's distress that we were willing to put him into the hospital in order to relieve his suffering, the doctor assured us that he would be very aggressive in working on M's lungs so that we could allow his liver to now do what it was going to do, to relieve M's suffering, and he could do all of this while keeping M at home.

While II was on the phone with the doctor, M began to beg with me. In the past, M always considered the hospital a grand adventure. He met new people, got undivided attention from a parent, got new toys watched all of the Spongebob he wanted and sometimes got to ride in cool ambulances and helicopters even. M always liked going to the hospital. Not this time. He begged and pleaded with me. He told me he didn't want to go to the hospital. He wanted to stay home. He kept saying, "No more, mommy. I don't want to go."

This was a turning point with us. M's doctor ordered steriods. Steriods are highly toxic to the liver and throw the pancreas out of equillibrium. Steriods are a dangerous thing to prescribe M. However, we reached the point that without these, M could not breathe and would continue to drown. This was he first aggressive palliative care measure we had ever sought for M that we knew would have immediate and fast acting consquences on his life. Essentially, we were choosing to give him a medication that would kill him quickly for the chance to provide comfort in a process that we couldn't stop. It meant we recognized that M's death was no longer something abstract in the future. It was now.

At 11 pm, II and I drove across the city to the only 24 hour pharmacy we could find. We cried. We prepared. We understood what we were doing and we refocused all of our effort for our son. We could not fail to support him nor could we stop his death at this point. We discussed what we needed to do to help him be comfortable and safe. We called Hospice to pick up waterproof pads, diapers, and wipes. We knew he would ilkely never use the bathroom again. Mostly, we just held each other and we cried. We knew when we got home it was time to finally tell M what was going on.

For five years, I called this child my son. The last nine months he was in fostercare, his fostermother stepped out of the way and encouraged me to claim him as my son. I had been involved in the daily care of concern of my baby for half of his life. For every day of that, I always assumed that when the day came that he was beyond the point of stopping death, that he would know what was going on. What I realized after this cold set in was that his body was telling him something, but because of his profound autism he didn't understand what it was telling him. The only way we could prepare M for death was to directly and specifically tell him what was coming. Saturday night, there was no doubt in my mind that it was time to tell him, even if doing so meant he gave up fighting to live.

When we returned home, we set into motion what we had prepared. We had discussed over and over again how to tell him and when to tell him. I had consulted with his old school teacher. We knew the only way to not scare M about death was to present it as something so much better than what he had here on earth anymore. So, we set aside all of our questions about theology and we told him the most basic and comforting thing we could tell him. We told him that soon he was going to go and be with Jesus in heaven. That when he got there, his body would never hurt again. He would be able to run, to blow bubbles, to even breathe without pain. We promised him he would be whole. We explained that we would miss him terribly here, but we would be okay. When he was ready, it would be okay for him to simply go be with Jesus. We would stay with him and hold him every step of his life that was left before he left us to be with Jesus.

Funny how telling my son what comes next brought back my own faith. For nearly three years, I have grappled with what I do and don't believe. I never lost my faith in God, nor my committment to a Jewish carpenter. However, I wasn't sure what else I held onto, when the church was so unsafe for me and my family. In that moment, I knew that I do still believe in heaven. I knew that my son would be with his creator soon, and that he would never hurt again. Honestly, I hated myself to say these things, not because I don't believe them, but because no mother should have to tell them to her ten year old child.

Saturday night, we started steriods and Sunday we had a lull. The steriods did their job to open his lungs and allow him to breath and he was comfortable, blessedly comfortable. For a tiny period of time, we actually dreamed that maybe we could still get on top of this cold. However, Monday came and the doctor switched his antibiotics to a different regiment, one that we stopped using three years ago because it no longer worked. The current ones were not working, so we had to try. In the midst of all of the labs, we also discovered that M's blood sugar skyrocketed. Again for a moment, we thought we had a lead that might end in something other than death right now.

Cycstics have pancreas function that is ineffective. Most are pancreatic insuficient and do not produce their own digestive enzymes. If they live long enough, eventually the rest of their pancreas dies and most Cystics developed what is called Cystic Fibrosis Related Diabetes (CFRD). So when we saw M's blood glucose levels so high, we thought perhaps he was developing diabetes. This would definitely explain his breathing struggles and why he appeared to not respond to the antibiotics. Except, this lead was not to be the miracle we were praying for. He didn't have ketones in his system, and his lab test that would show whether his blood sugar had been unstable long-term was normal. The only thing we could identify causing the sugar issues was the steriods.

We had to take away the ONE thing that was keeping my son comfortable. We stopped the steriods immediately Monday, and I knew it was a matter of time before he would start struggling to breath again. I also knew if the new antibiotics did not do their job, we were out of options. My son was dying. His lungs were drowning, and there was nothing we could do to stop this process.

Through all of this, M continued to fight. He was sleeping 18 hours per day. Yet, twice a day he had 2-3 hours of active, alert time. Sunday, he went outside and picked clovers with his sister. Monday, he was running around my house. Tuesday, he went back outside one last time to play. He got tired and sat down but he was out there and tried. By Wedneday, he could no longer walk on his own but he continued to have periods where he would sit and his siblings would play with him on the iPad. He was still guzzling Gatorade. He ate spaghetti for dinner Tuesday night, after refusing to eat much since January. He was talking to us as late as Thursday morning. M's spirit was here, with us, fighting death, to the very end. I never saw anything like that. I really thought his liver would crash, his amnonia levels would rise, and he would go into a coma. It really never happened. His spirit fought to the very end to stay here with us. I never expected that to happen.

Tuesday morning, M looked just the slightest swollen. However, he had been on steriods. so it was possible he might swell slightly from those and it might not be his body shutting down. We fed him his normal morning feeding and didn't see any trouble. However, we did weigh him and he was up eight pounds from two weeks ago. So, we knew he was likely swelling some. When I went to feed him t lunchtime, I had this horrible fear that his body could shut down and I could do more harm than good. However, his palliative care doctor had specifically told me to kepe feeding him, so I did.

Immediately after eating, he swelled up like a balloon and I knew we were in the last moments of my son's life. The organs and body systems shut down as the body dies. M could not digest that food. In fact, he never did digest it. I called his doctor and she expressly said that his labs said this might be his lungs and thus salvagable. She instruced me to take him to four cans a day instead of his normal eight but don't cut off all feedings quite yet. Since I had already given him eight cans Tuesday, I figured that gave me 24 hours to figure out what this was and react appropriately. I took him down to only eating or drinking what HE wanted. Of course, he wanted to obssessively drink. In the next 24 hours, he drank 3 cans of Diet Dr. Pepper and 2 bottles of Gatorade. He also ate two servings of spaghetti that night. Yet, he niether peed nor pooped.

Tuesday afternoon, he changed from being peaceful. From 1pm onward, he could not get comfortable. He would attempt to rest and would begin to have this grunting shortness of breath. His respirations were as high as 60 breaths per minute. We had taken him down to only the breathing treatments that would make him comfortable on Sunday and through the afternoon, I tried every anti-axiety medication I had to offer him, every pain medication I had, every breathing treatment I could offer him. By 8pm, we could not get him comfortable. He was restless and frequently sreaming on top of the breathing struggles. I called his palliative care doctor. I knew it was time for morphine. I knew morphine would kill him, which was why we had avoided until the very end of his life. Morphine would stop his bowels and cause a bowel obstruction. It would also quickly kill his liver entirely. It could only be pulled out at the very end, only to keep him comfortable at all costs. I knew what I was asking before I called his doctor. I knew it was time. When I called, her that was exactly what she told me. She sent a hospice nurse to assess him and confirm it was time for morphine.

While waiting for the nurse to show up, he started screaming again. I hadn't left his side in days. I was falling apart. I couldn't help my son feel better, and I couldn't hold myself together. II told me to go, go get out and breath for a moment. So, for a moment, I ran away. I went for a walk. There's a loop of roads that if I were to walk it would bring me back to my own door but send me walking 5 miles. I haven't built up to that yet, but Tuesday night that is where I headed. I made it 2 miles before II showed up. The only pharmacy open where he could go get morphine for M was 45 minutes away. He needed me to come home and hold M while he ran for meds. So, I came back home. I held my baby and I sang to him to calm him until his Daddy brought the medicine to stop his pain finally and forever.

Tuesday night, I laid next to my son and kept my hands on him. He mistook our talking about Hospice as a hospital and begged us to please not send him to the hospital anymore. We reassured him over and over again that he would never go to the hospital again. He was home to stay, and we would stay beside him until the very end. The morphine helped ease his pain. I kept my hands on him so I would know what happened to him. By 5am, he was doing okay and my body was killing me so I laid down on the couch for a few hours to rest. By Wednesday, M was losing the ability to swallow. His speech was slurred and he was incapable of holding his own balance to sit. Someone had to help support him or he would flop backwards onto his next. By afternoon, we were trying to slow down how much he was drinking. I didn't want him to feel denied, but I also knew if he wasn't peeing or pooping, that too much fluid would cause him tremendous distress. I was honestly grateful when he could no longer suck from a straw, then when he couldn't even sip out of a cup and we had to use a syringe. Our mantra became, here's a little Gatorade, you can have more after you take a nap.

Wednesday, he could not walk. When his aide came to bath him, his Daddy had to carry him to the bathroom and hold him upright while she bathed him. He had several periods this day when he would get restless. He wanted to go play. The best he could do was play on the iPad. His body was failing him and this distressed him but also made him mad. More than once, he would try to tantrum about this situation and we would merely give him a few minutes before he would fall back onto his nest and give up. Each time he became distressed, I would go to him. I would play Puff the Magic Dragon and I would sing it to him. Each time, this would calm him back down. Each time I would hold him, and hold back the tears. The last verse in Puff is horrible to sing to son who is dying, by the way.

Wednesday night, we gave him a good dose of morphine and settled again to try to sleep. At 2am, he woke up. He had peed, which was only the second time since Tuesday that he had done so. II and I changed him, cleaned his skin off well, gave him the Gatorade he asked for (only a bit more than a drop this last time). He sat up and refused to lay down. He was so weak by then that he propped himself over like a newborn to try to stop himself from falling backward. Finally, it was clear it was too much for him. We gave him another dose of morphine and II and I laid down next to him and began to sing. He asked for the iPad and we told him he could play it in the morning. It was clear that he could no longer see. His eyes were cloudy and unfocused. I couldn't tell him that he would never play the iPad again because he could no longer see it to play. We just told him to rest.

We turned Puff on my phone yet again and began to sing. In the third round, I broke down and could not sing through my tears. The little stinker followed the sounds from the phone and grabbed it. He held onto it and got aggitated. I asked him if he wanted me to turn off Puff and he nodded yes. I asked him if he wanted his "I love you" song and he nodded yes again. Since January, M has used this song to facilitate his ability tell me that he loved me. Earlier in the day Wednesday, I had been crying while singing Puff another time and M told me to stop crying. I switched to M's "I love you" song and I knew M was telling me that he loved him and to please stop crying. After that song, we all went to sleep. I assumed when M reached the very end, I would sense it. So I laid next to him and yet again slept with my hands on him through the night.

At 6am, he did a gasp. He was in Cheyne-stokes breathing and had recently knocked his oxygen off. I gave him another dose of morphine to keep him comfortable, got his oxygen back on him and woke II immediately. We lay next to him watching him. I turned on my phone to continious play for Puff. By 6:20, he was still with us. He garbled out asking for Gatorade, which was barely recognizable and we told him no, not this time. He then called out Daddy. When II looked at him, he tried to say, "I love you." Even in death, he was still HERE. Miraculously, instead of getting worse, he got better.

Our newest son, S has been inpatient in the hospital for several weeks. He was supposed to get a day pass to come see M and say good-bye the week of the 16th. I had called his care team on the 10th and explained to them that M would not be here if they waited until the next week. It had to be as soon as possible. S had specifically requested the chance to say good-bye to M. S's care team met with him, determined that he did in fact want to come, and they committed to doing everything they could to help get him here. However, it was determined that S is still fragile and could not simply have a day pass from the hospital to visit his brother. Instead, they felt his therapist and a different staffer needed to come with S. Therefore, the 12th was the soonest they could get him home. He knew there was a risk that M might pass before he got here, but he also knew everyone was doing everything they could to get him here. Sitting with M at 6:30 that morning, I really wasn't sure he was going to make it until S came home. He had asked for S the day before, so he knew he was coming that day. His body was just so weak and so worn out.

At 6:30am, I woke C. He was just around the corner in the library, as he had refused to leave M until he was gone. At 7am, we called the other children. I had two requiremens for each child. They had to tell M that they loved him. They also had to tell him good-bye. Those were the two things M needed to hear from all of "his kids" and I would not have him fighting to stay with us all because one sibling failed to release him in love. So long as they each released him, they were then free to process their grief and their position in his passing in whatever manner they each needed. It took nearly an hour to get E to come and say good-bye to her brother. She was the last of the children to come, but one by one they came. Some hugged him, some just sat and held his hand quietly. A sat quietly for an hour, merely holding his brother's hand. Even the dog came to say good-bye. She shoved her way between A and M and for 20 minutes she lay next to M while A pet her ears. M loved that doggie. I knew it was her good-bye as well.

E said her good-bye and then made a decision that she did not want to be in the house when M died. The nanny had already decided her children would not handle being here. So, after E said goodbye, she left for the day with the nanny and her children. J couldn't handle the pain well so he sat on the couch with the iPad for most of the morning. I continued to tell M how much longer before S could come, as I strongly suspected he was fighting to be here for S. The art therapist for three of the children was here and did art therapy with the youngest two.

At 8:20, Ch had sat with M for nearly an hour and got up to walk to the other side of the room. He told M he loved him one last time and M attempted to garble back that he loved him too. It was the last time M spoke. He had tried a lot before 7:30 and we had begged him to save his strength that we knew he loved us and it was okay.

At 8:45, S knocked at the door and walked through. This was who M had held on so hard for, had defied odds for. I hugged my newest son and reassured him that his brother held on. I told him the same thing I had told the others, tell him you love him and tell him good-bye. For a moment suspended in time, M was flanked by his biggest brothers. He was also SO proud of "his kids" and for that moment, A sat on one side, S sat on the other and I sat at his feet. He was surrounded by love and kept comfortable and painfree at all times by this point in time.

S struggled after 20 minutes and ran to another part of the house were II and his therapist worked with him for another 20 minutes. He sat another 20 minutes with me on the couch across from M, while L and J laid next to M hugging him and singing Puff to him. Finally, S's therapist suggested it was time for him to head back to the hospital. They did not feel it was wise to let him stay to see M actually pass.

After E and S were gone, A also left to hide in his room. However, the other five children stayed until the very end. In perfect unison, II and I understood that we needed to help M give up the fight. We increased his morphine just slightly but staying with the allowed dose the doctor gave us. At 10:30, it was clear M was going to fight no matter what. We felt the oxygen was no longer helpful but simply prolonging the envitable. Once again in unison, we felt it was time to stop the oxygen. Swiftly and quietly, we turned it off and allowed M to be free of all intterventions. He had railed and raged against the things we did which kept him alive. He hated tubes, hated interventions, hated all things that bothered him but kept him alive. We knew the oxygen might prolong his life a few more hours, but was bothersome to him just the same. He was unencumbered and free finally.

Within five minutes, his body turned blue. He continued to burn with fever unfettered by the tylenol we attempted to give him. Blue and burning hot was not something I expected to see, yet it was a testament to the spirit of this child who was my son. Even in the end, he fought against it. His breathing faltered but did not fail him. His siblings began to recognize that he was faltering. R and L came and laid down on II and I. We were surrounding M, singing him Puff over and over again. His sisters began to cry. When they began to wail, I gently but firmly told them they could NOT make noises. They could cry, they could weep, but they must keep their noises quiet so as to not scare him. Over and over again, he had proven that when he should have been mentally gone, he was still with us. I would not have them scaring him with loud mourning before he was actually gone. I promised the girls that as soon as he was gone, they could be as loud as they wanted to be, but until he was gone they must be quiet and not scare him.

At 11:15, M showed his first signs of Cheyne-Stokes breathing returning. I knew he could fight for another hour if he didn't just let go. I knew the gasping and pausing patterns would be more suffering than he needed to go through, and more torture than his poor siblings could handle. I had begged him to let go and stop fighting for 45 minutes and still he had fought on. I decided to try something different.

I sat up and pulled M into my arms. I quietly told him that it was okay, we would do this his way. I whispered, "M, this is one battle you are not going to win. You don't have to fight this battle. It's okay to let go now. But, it's okay, we'll do this your way. I stay with you until the end. When you are ready, you can let go and I'll stay here with you."

In that moment, my soul and my son were one. The eyes that had been cloudy and unfocused snapped back, well the good eye did. His lazy eye had been gone for two days and it didn't return. However, with his good right eye, M looked at me and began to blink, almost frantically.

"It's okay, M. I see you blinking. I know you are here. I know you can hear me. I'm here with you."

Another blink to respond and still the eye stayed focused directly upon me, never faltering from watching me as I watched him as well.

"Okay, M. It's time to let go now. It's time to stop fighting and just go be with Jesus now."

A pause in the breathing but he continued to focus on me. He took a tiny half-gasp to breath again.

"It's okay. You are trying to let go. I see that. We'll do this again together. One last time, my son, let go."


He stopped looking at me.

In the moment he lost eye contact with me, in that very moment, not 15 seconds after his last breath, I felt his heart stop. Not a several minute fight, not a falter and slowly stop, just an immediate halting.

He was gone.

I asked II for my stethoscope to confirm his heart was stopped and II said no, this was his job. So he listened and confirmed our son was gone.

In that moment, three siblings were touching their brother. One sibling was just slightly to the side but still part of the circle of love surrouding this child. One brother, too young to understand all of what was happening, sat across the room on the couch. Every child let out a wail so loud and so deep that it ripped my heart into pieces. He was gone. They knew they were allowed to cry out now.

II and I called A downstairs. It took 3 times for him to come down. We told him M was gone. He sat down with us and he too wept bitterly.

For about 5 minutes after he passed, I continued to hold my son in my arms. Then the words I heard whispered to my soul hit me, "This son is gone. You have done al you can for him. Now, tend to the living and comfort your other children."

That is what I did. I had II help me set M down peacefully, under his beloved Cars blanket, clutching his Raggedy Andy and his smallest Mickey Mouse. At some point, we called S and E to tell them. At some point, we called Hospice to send grief counselors and his nurse. When hospice came, they took the children away from the scene. C had not worked with the art therapist because he had realized M was in those final 45 minutes so he begged me to call her back. After the grief counselor worked with the kids, they went to the nanny's apartment to watch TV while Hospice prepared his body. Shortly after he passed, the children all let up a cry that he MUST have a Mickey Mouse shirt to leave the house in. He had none. II made a mad dash to the store and found the very last Mickey Mouse shirt there which he brought back to the house. Hospice dressed him in red pants and this Mickey Mouse shirt. He was covered in his Cars blanket and his had his Raggedy Andy and Mickey Mouse with him. The kids were allowed to see him one last time if they wanted to, his little sisters both came, the rest stayed away, except C. C had a panic attack when the funeral home came. He wouldn't let M's body leave. Everyone assured him that he could take his time, but he began informing me that he would never grant permission to take the body. By then his therapist had returned. I finally sat next to him and told him I didn't want to be forceful, but he KNEW what happens to bodies when they die. We could not leave the body in the house forever. He finally consented to letting the body go, and went to work with his therapist while we completed the last rituals for M. II lifted M onto the stretcher and I arranged his things for him. We granted the funeral home permission to take our son from our house.

It was finished.

Micah Andrew 3/22/02-7/12/12. His death certificate officially states he died of cirrhotic complications from Cystic Fibrosis. 65 roses may have stolen my son's body but it never took his spirit. It could not have his spirit. Breathe Easy my son. Breathe Easy.

Wednesday, July 11, 2012

Until the end

M is still here with us for now....barely. He has not slipped into a coma yet. We thought maybe in the night he had. He is not fully awake and functional. His eyes refuse to open. He cannot sit up without starting to lean or fall. He started on morphine last night. He was grunting at 60 breaths per minute and nothing else was helping. He also started screaming out in pain. I really wondered if he would wake up this morning, but he surprised me by hopping up---sort of.

He is aggitated. His mind still WANTS to be himself. His body will not cooperate with him. Thankfully, we have an iPad. It has been a godsend for M in these last four months. This week, it is the only activity that he can do so that he can play. He struggles to even operate the iPad now, but at least he can sit and play games or watch movies and it satisfies his craving to be playing.

He stubbornly refuses to rest. He wants to sit up. He can't sit and he can't open his eyes but he fights it anyway. He drinks though his kidneys are barely functioning. He demands to eat, though he hasn't eaten in three months and his bowels have completely shut down now. He takes his oxygen tubing off, though it is the one thing that genuinely provides him comfort. He screams at anyone who tries to comfort him and calm him down. He just sits agitated, fighting death and refusing to go gently into this sleep. He's so much more peaceful when he does sleep. When he is awake, it is torture for him and for us now.

I don't know how much longer he has. We continue to provide liquid morphone and ativan for comfort and try to push oxygen, also for comfort. We continue his Bipolar meds for as long as he is able to swallow. We give him the iPad and at least one sibling to help him navigate it, since he cannot fully do it alone anymore. He is surrounded by his family and now we simply wait for what has to pass to do so. It could happen quickly, or it could be slow and torturous.

Last night, my sister called and offered to pay to put him into an inpatient hospice facility. I was too busy working with him to contemplate what she offered. This morning, I remember this is the same sister who informed me in January that I didn't love him. This sister who has been so abused and lost without unconditional love in her life that she cannot fathom that I would find her offer odious and offensive. If she thinks I have walked this long walk with M for four years, battled his demons and his broken body and loved him through it all, and then will walk away from him now, she doesn't know what love is. Yet, she doesn't believe I love him, so of course she doesn't believe I CHOOSE to be here. I promised M a long time ago that I would stay beside him and hold his hand to the end. I'm not about to break that promise because it will make her more comfortable than watching us stand here as he fights death to the bitter end.

Tuesday, July 10, 2012

Another step down this path

The steriods to protect his lungs nearly killed him by raising his blood sugar. We have now been forced to remove M from the steriods. We hvae switched antibiotics in the hopes that the infection in his lungs will respond to different medications. Of course, the only other meds we hae to use is a combination we stopped using three years ago because the bacteria stopped responding to it.

At least, this morning his blood sugar was back to normal and I was able to give him his precious Gatorade again. He cried out in the night several times for it, and I had to tell him no. It broke my heart. Cystics lose salt at every step of living their lives. Officially, our kids don't need Gatorade style drinks unless it is *really* hot. However, we're told to give them their own salt shaker and encourage them to heaavily salt everything they eat. M won't do that. He will drink Gatorade like it's going out of season.

His blood sugar levels (which should normally remain 90-120) crossed 600 yesterday. We don't know the exact number as the at-home glucometer the nanny ownes errors out with high glucose readings at 600. This morning, he was finally back down to 109. I gave him Gatorade immediately.

We could only feed him twice yesterday. His Palliative Care doctor told me when he starts retaining fluids, it is time to cut back on feeding him. Today, his face looks puffy. However, there is no evidence in his extremities and that could be from the steriods he was taking. So, we're going to feed him and aim for three feedings today. I don't want to distress him and cause more pain, but I also don't want to cause distress or pain by not feeding him. Without his ability to report what happens in his own body, we are very limited in knowing when he reaches the point that it's time to stop giving him calories and fluids.

This morning, he complained his neck hurt. It was a bizarre complaint I have never heard before but I gave him pain meds anyway. He's tolerated me giving him a few efforts to comfort him and mostly he's crawled back under his beloved Cars blanket and crash back to sleep. So far today, I am not seeing the period of lucidity that we have been seeing to this point.

Everyone keeps asking how I am doing. I cannot leave this child's side to take my walks. I can barely go to the bathroom. I did get a nap yesterday while II was with him. However, he gets distressed if I am not close. I did go to my massage yesterday afternoon and he was unsettled and tantrumed the entire time I was gone.

II had to return to work today. He cannot sit a daily death watch when we don't know how long this will be. Therefore, the nanny is going to have to buck up and watch M for an hour this morning, one way or another. Actually, she'll need to watch him for 2-3 hours. Not only do I desperately need to go for a walk, but I have to take a child to a doctor's appointment late morning that I cannot cancel. There is nothing else that will take me away from him until Friday, but I need to make walking a high priority. I've missed two days again and I never feel well physically or emotionally when I do that.

This is hell. He was supposed to get tired and fall asleep. He was never supposed to have his lungs crash harder and faster than his liver and suffer the continued pain he is experiencing right now. Without the steriods, there is so little I can do to support and comfort him. Last night, he went to the bathroom and came back insisting he wanted to go play. I just kept telling him he needed his oxygen while he swayed back and forth trying to tantrum until he fell on his butt, and gave up the fight. His body is failing him and I cannot protect him from this. I can give him his Gatorade but somehow.....that just seems so inadequate.

Sunday, July 8, 2012

Death comes on it's own time

That is the lesson I am teaching my children today, and every day we have left to hold and cherish M. For two weeks, M has drowned, and fought violently against the drowning he has been enduring. Despite a week of oral antibiotics, and now a second week of the most aggressive IV antibiotics we have available to use, we are losing the battle. The Director of the Cystic Fibrosis center told us last night that in his opinion what we are seeing and what we are describing to him indicate that M has reached end state lung disease and not merely end stage liver disease.

In the moment of panic brought on by a drowning child we have been unable to stop the drowning for two weeks, we were prepared to admit him to the hospital. The doctor assured us there was almost nothing more he could add in the hospital and if it is still our desire to keep M home, the he can and will do everything at home that he would do at the hospital.

As II spoke to the doctor, M exprssed his desires in a way he has never been able to do in the past. He begged me no more hospitals. Please don't make him go to the hospital. He doesn't want to go to the hospital. For II and I, this is as far as we can go.

We have begun aggressive comfort measures for our son. We cannot and will not permit him to drown to death unless we have tried every possible avenue to stop it. Even if that means we stop supporting the liver so that we can make choices that are extremely harmful to the liver, it is acceptable when those same measures can and will stop the drowning.

Last night, we changed course. We set aside standing our ground, as M's primary CF doctor for so many years has taught us. We gave ground to this disease, and have choosen to sit and comfort our son. After watching him have no cognition of his bowels anymore, we are moving him to diapers with chucks underneath to keep the messes contained. We are borrowing button-up shirts from brothers so clothing changes are easy for him to tolerate. We picked up supplies late last night.

We have begun an aggressive course of steriods to allow M to breath comfortably. We will continue the IV antibiotics, again because it helps him breath. We retired his pnuematic vest, set down the treatments that are done to clear the gunk out of his lungs and will continue only with those that allow his lungs to function, as painlessly as possible. We have converted the corner of the living room to M's area. Never again will he go to his bedroom. I will not sleep at night wondering if he will be awake in the morning or not.

Most of last night, I laid down next to M on his beanbag chair. I held his hands, I stroked his head, I comforted him, I reminded him I was here. He slept holding onto me. At 5am, II, who slept on the couch, traded places to help my hurting body stretch and to take his turn to hold and comfort M. Two children refused to leave M through the night, so they camped out with us.

This morning, I have begun to teach the vision of end stage Hospice to my children. After years of pushing M to do for himself, we do FOR him now. We don't let go of him. We don't assume he can do anything. We comfort him. We hold him. We support him when he wants to walk. He is awake and he is playing the iPad this morning. He needs help. If there is a wrong button to press, he WILL press it and will shut down every game he attempts to do for himself. Thus, siblings will take turns simply helping him now. No one person can carry this burden alone. We must all support M and eaach other.

I have a call into Hospice. Their grief counselor is coming sometime today to work with his siblings. Several know and realize this is the beginning of the end, and they are weepy. Their hearts are breaking, understandably. They need to process. I have also begun to explain that they MUST take care of themselves as well. Death will not come when we dictate it should or must. It will come when it is time. So long as M is holding on, and is comfortable, we MUST continue to care for our own needs, individually and as a family. We cannot start a death watch that isn't time yet. We don't get to choose this. Death will choose it's own time to take M.

What is certain is that we are at the beginning of the end. When the last moments come, we cannot say for certain. It will be soon. It will be far too soon. It just isn't this very moment that I write. I don't know how much longer M has. His body is ravaged. His liver is nearly gone. His lungs cannot continue this fight.

Friday, July 6, 2012

Into the dark night

I don't know how to keep doing this day after day. Today, it appears we may be through the crisis this time with M. He raged through his breathing treatment last night, so three adults restrained him and began acting like a group of loons to distract him and to keep ourselves from wanting to cry. M has taken to screaming NO at the top of his lungs when he's raging. He did try screaming BOO but the fits of giggles that created apparently was not the response he was going for. II has taken to screaming random words back at M when he does this, simply to distract him. Sometimes, the random word are so crazy that M will disolve into a fit of giggles and forget to scream for a few minutes.

Last night, he was cognitively impaired. It was clear his liver was struggling and not winning the battle. He has a lung infection. The antibiotics are not breaking it up faster than his liver is quitting this time. He was worse last night than when he was admitted to the PICU in January. What he needed was to be kept on oxygen through the night and monitored carefully. However, after the week we have had, every adult in the house is covered in battle wounds and every child in the house is leary to even go near him. No one had the strength nor fortitute to battle him again even if it meant last night would be his last. We put him to bed, which is what he wanted all along so he settled and stopped raging and slept.

For the third time this year, I put my son to bed without knowing if he would still be here in the morning and then pretended to sleep while I waited for morning. Not melatonin was enough to trick my body into real sleep this time. II and I actually discussed what to do if he got up for the am IVs and found M either comatose or dead.

Morning came and he was slightly better, not a lot, but increments. He got his IVs and his morning feeding and then we put him back to bed. Since he didn't wake back up himself, we let him sleep until time for noon interventions. We knew if the new level of antibiotic was working, then we would start to see some positive changes. Conversely, if this level is still not sufficient, then we are running out of time before his liver bites the dust entirely if we cannot get the lung infection under control.

When he got up, he ran. Okay, he was trying to steal water to induce vomiting so we quickly had to redirect him to the Gatorade reward system whereby non-cooperating with treatments or inducing vomitting will result in losing Gatorade priviledges. It worked. He stepped away without drinking the water, and more importantly without puking all over the living room. We got his oral medications into him with sips of Gatorade as rewards. We had to reaccess his port and bribed with a small volume of Gatorade. II was able to reaccess solo, far better than the five people it took a mere two days ago. He is currently protesting his breathing treatments. However, with the glass of Gatorade sitting where he can see it, he is doing better. We've just offered M-crack once he starts the treatments.

This is the best I have seen him in this entire lung exacerbation. It may not last, but this is the first time we've been able to extract cooperating based solely his rewards in two weeks. It means, at least for the moment, we get a reprieve from his march into insanity that dying has created in this poor child.

I just don't know how to not throw my hands up and quit now. Conversely, I am only partially at peace at giving up on my 10 year old son. I am fully aware that fighting this is merely prolonging the inevitable. We cannot save M. We cannot stop his journey to leave this earth. Even as we have fought to convince him to work with us and to provide positive reinforcements, I look up and discover his hand down his throat to the wrist yet again. Even if we survive this crisis, within two more weeks, we will be in yet another crisis. If this were his liver leading the way, it would be such a simple answer for me. When it is his lungs that simply crash the liver, I cannot bring myself to sit by and let this child drown to death. II has begun to feel that the compassionate thing is to simply stop fighting him and allow him to go down into that dark night. I promised this child he would NOT die a death by drowning. I fell it is my maternal edict to fight the drowning at all costs.

I promised M over four years ago that I would do everything in my power to force death to come by a great sleep. I would not stand by and allow him to drown to death. That death is horrific, and I believe the raging that has escalated this week is directly in relation to the distress the slow drowning has created in M. Evenso, how many more times can I do this? How long must we stand between this child and the drowning Cystic Fibrosis fights to claim in his lungs, praying that his liver will go first and simply grant him the peaceful sleep that is the LAST dignity this child deserves to have in this world? I fear my resolve to survive this, to fight for his sleep instead of this monostrous drowning gets harder every day that passes. Today, we appear to have finally turned a corner. Yet, it will come again and again until there is no fight left in any of us and death will come, whether we are ready and whether we hvae the opportunity to choose it or not.

Thursday, July 5, 2012

We are desperately trying to find positive reinforcements that will encourage M to cooperate without the battles and his violence. We went to Walmart yesterday and purchased a new straw cup for him, since he lost the lid and straw to his. He can only drink so fast from a straw, which is why he ditched the straw so he could guzzle fast enough to induce vomitting. We also bought dye-free Gatorade. He loves Gatorade. He's less likely to vomit it than anything else. However, we had to take it away two months ago because he was vomitting it and it was staining the carpets. Now, we can give him Gatorade and if he pukes it won't stain the carpets. We looked for the Spongebob movie but couldn't find it. So, we're liberally rewarding cooperate with Netflix episodes of Spongebob and Barney.

Our first attempt to earn cooperation, he drank a 12 oz bottle of Gatorade and threw it up all over me. Swell, just what I was looking for. So, now I'm giving him small amounts of Gatordate every 30 minutes. If he pukes it, he doesn't get more, if he keeps it down for those 30 minutes he can have more. He gets all of the liquids his body requires from his g-tube feedings. However, his throat and mouth need to be hydrated and we want to let him drink to accomplish that. We just have to control his fluids because he will deliberately use his fluids to vomit.

He's managed to drink a full 12oz bottle today without any vomitting. He has also swallowed his pills without fighting, raging or puking today. It's swallow two pills, get one sip of Gatorade until they are all gone and get a big sip of Gatorade as a reward.

He did rage through his breathing treatments this morning, but he wasn't violent. That's improvement, at least. II said he did better at his morning IVs, though not quite what we're going through. We'll continue to bribe with Barney and stop the movie when he doesn't cooperate and hopefully he'll settle down because Barney is M's crack. If he can have Barney on, he simply must. He's obssessed with Barney. Anything has to be better than what we've been dealing with this week.

Yesterday, we went to see S at the hospital. Since he was abandoned by the last family, it is very important to stay connected to him and help him know that he is not being abandoned this time. We frequently talk about the goal for him to feel better, to be safe and then to return home. They have had to do several medication adjustments with him, which makes it harder to accomplish the first feel better goal. While they were doing that, he wasn't even interested in talking about coming home. He has been tremendously grateful for the phone calls and the visits and the snacks we bring him when we visit. However, he hasn't even talked about homecoming. Sometimes, he's been very tired from meds, occassionally he's been agitated.

Last night, he requested that C come to visit him. He had been fighting with C since his second homecoming and there was a flashpoint fight between that that was part of his blowing out into the hospital. He had not wanted to speak to C for awhile. When he finally apologized to C, he did it through me because he wasn't ready to do it himself. C understands what is going on and has intentionally stepped back and waited for S to be ready to reach out to him. Last night, that is what happened.

The boys embraced and talked while they were visiting. It was such a sweet moment of grace and forgiveness to watch these boys reconnect. The thing is, these boys are so much alike that long-term I can see them being best friends. They have some misunderstandings they need to iron out, but they really want to love each other and be friends. C reminds S of the brother he lost when his first adoptive family threw him out, and that causes some pain and grief to S, which is when they start fighting instead.

S looks really good now. He was smiling and happy and talking a lot about homecoming last night. He had requested we bring him McDonalds for dinner, which was the first time he had made a request on the snacks we brought beyond the request that we continue to bring them. He wouldn't let go of J during the visit. He loves that toddler and misses him so much. He was never allowed to touch the babies in his old house. He wanted to love the babies in that house. However, they were so Patriarchal that they considered babies and toddlers the work of girls and any boy who wanted to love on those babies was considered a danger and a threat. S was considered a danger and threat to all but the oldest boy by virtue that he was black and he was male. I suspect part of why he told everyone that he felt like family here was because we don't isolate him, treat him like a second class citizen and refuse to let him love or be loved by anyone in the house the way they did. Here, he is family.

Today, after having a reasonably better day yesterday, the photographer who did family photos for us two weeks ago sent me the web pictures. We have to meet with her to get a CD of all of the pictures that were taken in the session. She is part of a wonderful charity of photographers which do free photo sessions for families with terminal children. They give you web publishing rights to the pictures, as well as the CD of all the pictures and rights to print your own copies of any pictures up to a 5x7 size. When we find funds to get bigger pictures, we'll have to order them through the photographer. However, she promised she would hold our pictures until tax season so if I can't find funds before then, I can purchase the ones I want at that point. They were amazing to look at.

They are the only professional pictures that will ever be taken of all nine of my children. S joined our family just before M will leave us, and we have this very small window where we have nine children. Before S came, we had no idea we would ever have nine and thought our eight was all there was to our family. Once M leaves us, S will remain with us, but we will never be complete without M again. DH and I talked for years that we intended to do one last professional session before we had to say good-bye to M and we intend to freeze that family picture on our wall and add a second one as our family continues to grow over the years. We intended to do that session this spring but M got too sick and we had to move, and use the funds earmarked for it in the illnesses and move. Thanks to this charity and the compassionate and rapid response of this photographer, we were able to do that afterall. They are beautiful and bittersweet to know we will never have this again. We went three years between having family pictures done. If we wait even a year this time, this small window of our lives will have passed. I am so grateful it won't pass with regrets that I didn't get it done. I couldn't have found the funds right now. I cannot say enough kind things to the charity and the photographer who made it possible inspite of the financial strains of adding S and saying good-bye to M right now.

Wednesday, July 4, 2012

Spinning, spinning, spinning

How is this for many hats?

Monday, I had to go to the inpatient facility where my new son, S, is still. We had his care plan meeting. In this, we discussed his diagnosis, his prognonsis and his treatment plan. The diagnosis is not good, but the prognosis is on par with his sister, E. He doesn't quite grasp that E struggles with similiar cources of her mental health issues, but I do. I then had to comfort this son as he is coming to terms that in addition to being abused, never loved, abandoned, and bounced into an entirely new family now, he is also going to have to accept the reality that his mental struggles are not a temporary situation.

I have no idea what the first adoptive family has tried to teach him. Given that they were trying to abandon him from the moment his psychic fell apart, they couldn't have take him positive and healthy outlooks for his prognosis. I do know they were telling other people (though conveniently not us when they tried to get us to take him) that he was possessed by demons. Well, isn't that just DANDY. Poor kiddo has the unlucky draw of a lifelong mental health condition and they respond from their fundamental nutjob paradigm to tell him this means he is possessed by demons. He's darn lucky that they didn't attempt an exorcist upon the poor boy. They undoubtably convinced him that people are afraid of his struggles and he needed to conceal them until they overwhelmed him and he could not hide them anymore.

Hat number one for this week was a combined hat. I had to be a mental health nurse, which fortunately is one of my absolute favorite hats to wear. I also had to wear my mother's hat, mother of a teenager hat. I'm a pretty good mother to teenagers, I have discovered. I used to think that 1-2 was my all time favorite age range for kids. I was so wrong. I love working with teens. Pre-teens are not my forte, but teens I totally can relate. I started laying the groundwork with this teenager that he is safe, that he is not going to scare us by telling us when he struggles, and that it is our job to help teach him how to be healthy with this diagnosis. I wear my mother's hat a lot. I'm not sure how well I wear it, but my life is often consumed to the point I lose other important hats--like being ME.

After that, I had to switch hats for the afternoon. II had his appointment with the Oncology Orthopedic Surgeon. The first thing out of the doctor's mouth when he entered the room was not to ask the history, was not to reassure us this consult was overkill. The first thing out of his mouth was, "Do you want to keep your toe." II was given two choices. Either he can consent to have the toe removed now. Or, the doctor will do testing, biopsies and, as he put it, he will simply justify to II that it will be necessary to remove the toe. There was no discussion that II could actually keep the toe, ultimately.

The bottom line is that the surgeon doesn't know what the mass in the toe is. He is a soft tissue tumor specialist. It's really not a good thing if the specialist doesn't know what this mass it. He cannot say if it benign or malignant because he's never seen anything like it. The reality of this mutation is that if whatever caused the mutated toe stopped after the toe mutated and the toe remains stable, it is not likely a problem. Once the toe is no longer stable and developing tumors in it, it is only a matter of time before the tumor that mutates in the toe will require the toe be removed. This one is actually far more extensive than we realized. It wraps around the entire base of the toe and travels slightly into the foot. Even removing this one will impair the toe and potentially require removal of the toe anyway. In addition, the more these tumors show up, the more likely they eventually go malignant. The surgeon says there is only a small chance this particular tumor is malignant. However, his preference (and it was a very aggressive sell) is to remove the entire toe and send the entire thing to Pathology and let them figure out what this mass is and whether it requires further treatment.

Obviously, the toe is coming off. The office scheduling department had gone home by the time we were done. They were supposed to call us Tuesday and did not. II attempted to call them and got disconnected. Emotionally, he's just going to wait until after the holiday and call again.

This time, the only hat I wore was wife. Nope, not even close to putting that nursing hat on for this one. This is pure emotion to me. This is my mid-30s husband who is in perfect health and the father of now nine children. I need my partner. I need my husband by my side. My children need their father to be here to raise them. I cannot see beyond the threat to his health and safety and while II grieves the loss of something that has always been an integral part of him, I simply hold animosity to a part of him that threatens the safety of my partner and my family. I also ache for the suffering he is going to have to endure to undergo this amputation and the recovery. I'm a tiny bit worried about the finances. If his company requires him to go on disabaility for the two weeks he will be out of work, that will result in only 70% pay for that paycheck. We'll figure it out, but I'm still nervous.

Yesterday, we were in the first full day of M's quarterly IV antibiotics. For some reason, the home health agency choose to not put one of his antibiotics into gravity balls but instead packaged it as an IV push medication. Hm..... There are three adults in this house, myself, II, and a live-in nanny. How many of those adults know how to do IV push medications? That would be ONE...the one that the state has listed as the nurse supervising the IV medications since this state requires an RN of record to be supervising. Yes, the palliative care agency convinced Hospice to put their agency as the agency of record and formally list one RN/mother as the supervising nurse.

This time, the hat was pure home health nurse. I'm giving M liberal dosing of his Ativan for anxiety (well within the parameters of his palliative prescription by his physicians but far more than I ordinarily provide him) because he is completely freaked out by this course of antibiotics. He nearly died the week before we started the IVs due to a common cold. The oral antibiotics only held the inevitible at bay until we got his IVs started. That means, not only is he very anxious but his health crashed in the day we transitioned from the orals that were barely holding him up and the IVs that will give him approximately two months of better health before he starts to decline again. I could wear my mother's hat on this one, but the honest truth is that M's autism means he cannot handle that. If I show concern and emotions, M will freak out worse. He needs to me to be strictly professional and act like his nurse for this. So, I supposed by deliberately not wearing the mother's hat with him, in a way I am just the same.

Yesterday, I also discovered that the BSN program I am supposed to start this fall has completely messed my coursework and financial aid up. I am calling them tomorrow, but I strongly suspect this cannot be salvaged. I am furious by the behavior of this program. I strongly suspect I am going to miss the fall for this coursework. If I do, I will be looking at other programs entirely. I have two other options, one local and one online, that I believe I can start in the spring. Both will cost more, one of those will stop our ability to return to our home state for two years. However, both programs are more reputable and more likely to assure I actually walk away with my BSN so I can get into my graduate coursework. However, I am disgusted that I will lose another semester due to the incompetence of this program. I will find out the end of this week, but I strongly suspect I cannot save this one, and at the least it will cost me a semester. More likely, this will cost me an entire year in my coursework. To be perfectly honest, if it has cost me a full year, I will likely take the GRE this fall and apply for the RN-MSN program I have my eye on.

So, the ongoing hat that I cannot keep setting down is my student/career hat. This is one part under nursing and another part pure academics. The underlying problem is that the program is not accustomed to a student who holds a Bachelors that is not in Nursing. They have treated me like an Associate graduate from the get-go and have been unwilling or unable to accomodate areas where I have clearly demonstrated their requirements in a manner outside of how they are used to seeing it occur. So, I have a slim chance I can salvage this fall if I can work quickly to get into another school, either for pre-reqs for the other programs that weren't willing to waive them when I looked into them previously, or for another BSN program that might be willing to work with me on missing the appliction deadlines for the fall.

Throughout this week, E has tried to destablize. The reality is there is simply too much stressors hitting her from so many angles right now that she cannot see straight. I've had her into emergency therapy appointments, lots of scripting, lots of walking her back to where she remembers to use her coping skills. Even so, every day is another point of instability as she starts her day and flashpoints of meltdown throughout her day. She's twice been on the edge of violence and thus going to visit her brother by joining him this week. I continue to work with her, but all by herself she can be exhausting. Remembering to make time and energy for her when I cannot get Chicken Little to quiet the cry about the falling sky is exceedingly difficult this week. Thus, nursing, mother, and therapist hats have been utilized with this child this week.

LMB has launched another assault against my father. Interestingly enough, this newest wave began when she was made aware that my father had a fiancee and was planning to get married. He dared to start healing and move away from her influence and she has retaliated by trying to destroy his life, along with the minor children, all over again. She is sueing under the claim that he has not allowed the children to visit her. While he has not encouraged them to visit, he has never actually barred their decision to visit her, honestly. However, they have choosen to not visit her for most of the last two years. The older two children left in the home have legally been awared right of refusal. The oldest just turned 18 and it's a moot point for her anyway. However, the younger two children, while old enough to legally have right of refusal in their state, have never been formally granted such. In their state, it is not an automatic condition from age, but something that must be specifically granted by a judge. When the divorce was finalized, these two children were just under the legal age when a judge could choose to award it. However, when they reached that age, they have acted as if they had the legal right of refusal. Upon the advice of the children's attorney, my father has permitted them to exercise that right.

LMB is now asking not only that Dad be found in contempt of court and sanctioned for parental alientation. However, she is also claiming that based a lack of visitation, the poor grades the children have in school (it takes many, many years to recover from shoddy homeschooling), their poor attendance at school (this is not actually true but she is lying as any good Narcisst will do), and the younger two children royally screwed up with a gang of friends last fall and got into trouble with the law. Upon these claims, she is demanded that custody be reversed and she be given full custody of the children.

LMB is the only person who truly things she has a shot at winning this battle. The old lawyer for the children has fully briefed the new lawyer and is prepared to testify in court to bring the new judge in the new jurisdiction up to speed upon the history of this case. LMB intended to switch jurisdiction by moving and then conceal the history so that a judge would only see the current situation and not grasp that all of the negative things that are visible now are aactually improvements from where this decimated and abused family started once they were legally free from her abause. She wants to use the courts to abuse all of us all over again. The new lawyer for the children has already informed the judge that this is not a case over custody but strictly visitation and that the solution is not to sanction and attack my father but to simply formally award the children the legal right of refusal and give them the right to make their own choices with their lives and relationship with their LMB.

One brother stopped visiting LMB entirely based upon her bizarre and insulting behavior this spring. My brother has scoliosis. First of this year, he had to undergo his second back surgery to prevent the curvature from crushing his organs. He spent over two months between the hospital and hospital homebound school in recovery. While he was in the hospital, this woman kept visiting him. Afterall, she must look like the good mother to the world. Except that while she sat there, she began to whisper disgusting allegations about my father to my brother. She is now alleging that my father has molested all of his daughters and most of his grand-daughters. It's disgusting. It's unfounded. It's a patent lie. It's ironic from a woman who not only turned a blind eye to the molestation of her very young daughters by her own older adopted daughter years ago, but has met the legal defintion of molestation in her own interactions with me for most of my life. My father has never molested any child and there should be an ability for her to face criminal charges for this one. There is no legal recourse except to ignore her. My brother has choosen to have nothing more to do with this woman for this behavior. She's subpeonaed him for this upcoming court case, it will be interesting to see the reaction the judge has when this brother tells the judge why he will no longer speak to LMB and that it has nothing to do with Dad.

Even so, I have had to wear my role of daughter and sister quite a bit this last week. I have to calm down both older and younger siblings. I have to help coordinate children in the home giving Dad space because his stress levels are in overdrive right now. I have to comfort my father when he reviews our testimony and again realizes what he allowed this evil to do and hurt his children right underneath his nose.

The strangest interpretation of my role as daughter is that my father and his fiancee appear to have possible broken up. He admits he cannot seperate this new woman from LMB. He is assigning the fiancee motivation that was LMB's. He is afraid she is trying to control him and make him a kept man. He feel emasculated because he still has no full-time job and this finacee is quite well to do. She loves him. She has supported him and stood through all of this struggle with his healing and LMB. What she cannot tolerate is that he has withdrawn from her entirely and says he doesn't think he wants to be with anyone anymore. Both have sought me out to process and to deal with their hurting hearts. I just mostly listen. There is little else I can do for either of them. If they could weather this attack, I think they would have a great future together. She is heartbroken that she stepped in willingly as mother to his children and grandmother to his grandchildren and she loses not only her heart but the family she always prayed for and never had. I don't know where they go. If he walks away from her, I truly believe he will give up the best thing that ever happened to him. However, I cannot tell him what to do, nor can I ask her to not make a decision until this is over and wait to see if he can get back to the stability and point of healing he had before this newest assault started hitting him.

It's only Wednesday. I have been up, down, and all around this week. I'm afraid I'm not done yet. M's antibiotics are a three week course, and next week we add his summer schooling to it. S is just beginning his journey to mental health. E has been on hers a long time but the unstructured environment is not proving to be a healthy set-up for her stability. My other children require lots of attention and devotion or they will become squeaky wheels, screaming out to me that I am forgetting to give positive attention to those who are not struggling while giving so much attention to those who are struggling. II will face surgery, likely before my birthday in August and I will have to support him through the recovery as well as manage the stress if we face a reduction in his pay for the struggle. I am starting to feel overwhelmed. I am starting to remember that I need to care for ME in all of this chaos. I am re-evaluating the things I had intended to make sure I stay in balance for now. Everytime I hope and pray that life will settle down, it never, ever, ever actually does