Glimmers of hope

Yesterday morning, we recieved an unexpected phone call. When the ex-nanny filed false allegations with CPS against us, they concluded their investigation in 2.5 weeks. However, while they told us they found nothing of concern, wanted nothing more from us, nor did they anticipate unearthing anything else, they never formally close an investigation until they reach the 60 days this state allows for them to conduct their investigation. They insisted to do so would not be "due deligence."

Beaucracy at it's finest, no doubt. CPS understood that their investigation interfers with S's legal case (and the nanny knew this when the call was made but apparently keeping S safe and secure didn't even register on her radar). We left it alone and honestly did not stress more over the time situation more than absolutely unavoidable. We assumed the case would be closed at the end of October when their sixty days were up. We just hoped the judge would not penalize *us* for this situation and it's interference in S's case.

As much as I want to share S's story, because S has been through more than anyone could imaagine and that story and this child's triumph and strength of spirit is stunning, I cannot speak of the case for awhile longer to protect this child who entered my life as an absolute surprise. S's situation was very precarious for awhile. The challenges to keeping S safe were well known to both the nanny and CPS. All I could say to CPS and to others invovled with the case was that her choice to call CPS with lies demonstrates exactly why she was fired and considered unsafe to this family. However, it doesn't negate the damaage she did on her way out the door.

As of yesterday morning, the damage and danger is mostly mitigated. For reasons that were not explained to us, CPS has reversed their position that they are not able to close a case early and they have formally closed our case, unfounded of course.

Yesterday afternoon, I saw a new doctor. As I got sicker and in more pain since Micah died, I became more aware that there was something more than grief going on. The rash that had been diagnosed by two doctors as eczema and another as psoriasis did not respond to any treatments but grew far worse. My blood pressure destablized. My body ached. My thyroid went completely amuck. I was in misery. When I attempted to be seen by my doctor, his staff was beyond frustrating. Ultimately, I realized that I cannot do battle with a doctor's office staff and craze a partnership with my doctor through this time. I believed I had this with my doctor, but it was clear the same was not true of his staff. So, went to a new doctor and saw her yesterday.

She was kind and compassionate. She listened to me. She acknowledged my grief and the complications it brings to assessing my health. Most of all, she was confident she can work with me to restabilize everything. EVERYTHING....that means even the rash. In fact, she already started treatments that the rash is responding to.....because she is the first caregiver to say it is fungal. In 24 hours, the rash is in full retreat and feels better for the first time in ages.

We are attacking this both typically and systemically. She cannot start the oral medications until she runs labs to check my liver function. Those labs have to be run with me NPO (nothing by mouth). We went to the lab this morning and the orders were missing. So, for this weekend, I am workinh with topicals and I will call her office Monday to get the lab orders for the orals straightened out. After two years of misery, and months of giving up hope that this would *ever* get better, I have hope.

Running forward

Today, I found the courage to finally call one of my oldest and dearest friends and ask him why. Why was he silent when my son died? Why has he been silent since then?

I tried to call him when Micah died. I tried to text him. By the time I realized he never responded, nor did he post on facebook, like so many who didn't know what to say did, a month had passed.

I had no idea what had happened. I feared he deliberately ran away, like others did. Three of my own siblings ran away, so I know running from my pain is not an unheard of response, even from people who supposedly love me. However, those siblings did at least let me know they loved me, even as they ran.

Today I called him and asked him what happened. He was busy. He lost my phone number. He didn't think about facebook. He's been under tremendous stress as a single father and with a difficult work situation.

They were all truthful. They just weren't the truth of why he disappeared.

Underneath all of the excuses, he admitted he just didn't know what to say. Everything he could say felt inadequate. So he said nothing.

This friend of mine lost his best friend in high school, his first true love and the girl he saw spending the rest of his life with. I know death is painful for him.

Running away from me in my pain is just as equally painful. I know he loves me. He is the big brother I never had and in many ways I am closer to him than I will ever be with my siblings. I know not he nor anyone can know my pain, protect my from my pain, or make it better. I also know that I need to be reminded that the people who love me are still here...will still be here when I find the other side of this chasm of grief.

He said the only thing he can say now. He's here now. I can't ask for more, and I don't expect more. It does hurt when those who love me run away from me instead of simply loving me right.

Where do we go from here?

There was never a life without Micah. There was never a plan nor even a vision of what it would be like or what we would do once Micah died. It wasn't that we didn't know he would one day die. Death hangs in the shadows of every day you walk with Cystic Fibrosis. It's always there; always the nemesis that you know you won't ultimately win. However, you just cannot take it out and examine it. If you do, then you will be incapaciated to survive the day you are living when death is merely in the shadows. Those are the only days you get, you have to live them as if you don't know death is always there.

So, you never let yourself think about what will come afterward. I still tell other CF moms my mantra that got me through every panic attack, every crying fit, every sleepless night, every moment that I wanted to curl in a ball and cry until I could convince death to just leave us alone.

"Not my time yet." Today was not my day to mourn and to cry. So, I did not choose to succomb to that grief when it was not yet mine to embrace.

I knew the day would come that it was my turn.

What I never envisioned was what would come after that day.

I am now 2.5 months past my time and I don't have a clue where my life goes from here. I cannot measure a lifetime or a future right now. Sometimes, the gas pumps still argue with me like they did that very first week and I rarely win the fight. It mostly happens if I use my Paypal card at a gas pump, and I cannot for the life of me figure out why. The day I had to pick S up from the hospital two weeks after Micah died, I fought with multiple gas pumps before one of them finally agreed to give me the gas I needed to bring my other son home again.

If I cannot figure out how to win a battle with a gas pump, why do people think I can tell them what comes after this?

I love my father. I feel so blessed that after being estranged for the first 30 years of my life that we have rebuilt a relationship of love between us. I love that my little girl can call her Grandpa and tell him good morning before she heads off to school just because she wants to. He is the grandparent my children have and I know the gift that it to them.

Last Thursday, he called me up for yet another time to ask what our plans for the future are. There's a church an hour from us that is very interested in hiring him. He is finally far enough out from the divorce for churches to consider him again. I do not know if all Mennonite conferences have the same policy, but his conference requires a year after the divorce is finalized before you can hold a church position again. When he hit that mark last spring, he started looking for a church again. This is the first to look very likely that both he and the church have genuinely been interested in moving forward.

It's New England, which is vastly different than where Dad lives now. However, he spent years in the northwest so the climate is not terribly different. The culture is much different but New England is ALL about being the village that is a support a single father with struggling teens would thrive in.

He wants to make his decision on whether this move will put him close to 3/4 of his grandchildren or not. I cannot promise him we will stay here. I don't know if we are staying. I'm not sure I care. For every positive about staying, there is a negative. For every positive about leaving, there is a negative. This area would be good for Dad's family whether we are local or not.

The idea of wanting us to KNOW where we go now is not unique to my father. Everyone wants to know what we will do, where we will go, what lies in our future. They all mean well. There are just only a handful of things II and I both know for certain.

We will not adopt again......at least not in the forseeable future, though we don't feel like we can really answer for the rest of our lives....mostly because everytime we say no more kids, another one enters our lives.

We will live somewhere. We have no idea if it will be here or back home or someplace completely out of left field. For now, the job is here and we want the children to remain in this wonderful school system for the school year.

I will go back to school. Almost certain it will be Nursing or Sociology but genuinely not certain which one it will be.

I will hug my children often, as often as they can tolerate me hugging them. My teens constantly roll their eyes when I hug them, and I hug them anyway.

We will finish the legal and paperwork process to complete S's adoption. All that is truly left is for S to heal enough to find his voice and be ready to tell a judge he consents to the adoption. Right now, he can articulate that he wants us to finalize the adoption, but the thought of being empowered enough to use his voice, according to him, makes him itch all over. S is safe and the finalization is a formality, so we wait and give him time and space to heal first. He knows the finalization is merely a formality and knows he is safe and home. If he cannot find his courage by spring, we'll look at addressing this in his therapy.

I am going to fight to get my health back at all costs. I have an appointment on Friday and it will not be my last to work on the issues that have arrisen in the maniestation of grief I am facing.

I am going to continue to work to help my children heal, to give them safety, normalacy and respect to grieve in their own way and to graduate out of their therapies as they are ready to move forward.

Everything else? The really big decisions? I don't know. There was never life after Micah to even GUESS where we would go afterward. Right now, I am in this deep chasm. I cannot see the way out and I don't think I am supposed to yet. I know I am not supposed to be able to tell you what road I will start driving on once I am out off this place when I cannot even see the way out yet

Cardinal sins

So....

here's something you never, ever, EVER say to the grieving mother of a dead child.

You NEVER tell a mother who has lost her child that you don't believe she loved her child. NEVER.

You especially don't deliberately seek her out for this special brand of cruelty.

You don't somehow convince yourself of your special crusade by showing a henious lack of humanity. You don't make yourself feel better for your own problems by trying to cut down and hurt a mother who buried her child.

It's crazy to me that sometimes people see my palpable pain and immediately attempt to negate it. Yes, I know it's hard to wrap your brain around my pain and grief. I know that I am living every mother's worst nightmare. I know that it would be easier for you to somehow make this about you, about how you can protect yourself from what I am living.

Don't.

If you cannot handle seeing my pain, then simply walk away. I don't expect anyone to solve this for me. It is not your nights punctuated with his voice, with dreams so vivid that I can still feel his hands in mine when I wake up to discover that the closest I will get to holding his hand again is a plaster mold that sits on my mantle. I don't believe anyone can take my pain from me. I know it's uncomfortable to see me and to know that my son died.

Just walk away. Don't try to make it easier for yourself by villianizing me. Do NOT come to my blog on a false crusade and attack my love for my son. Do not show your capacity for monstrous hate by projecting that vileness upon me and how I loved my son.

There are people in this world who have the knowledge to speak about my relationship with my son. Since I keep this blog strictly annonymous and barely trafficked, most of those people don't even know this blog exists to speak here. Not one person who walked this five year journey with me would ever suggest such disgusting nonsense as accusing me of not loving my son.

This blog is annonymous very deliberately. It is not monetinized. It is not advertised nor promoted. It has only rarely been shared that it exists with anyone online. It is my journal, not my self promotion to the world. I made a decision to keep this online years ago, after II stumbled, in the belief that it might be stumbled upon by someone, sometime who might need to know that you can reclaim your life from bad circumstances, that what happens to us is not what defines us. Under no circumstances will I allow the annimity of this blog to be violated. Most definitely NOT for someone's bizarre and unprovoked personal vendetta.

Even so, no matter what any of the infrequent readers of this little corner of the world might think or feel about what they read here, or what they think they have been told about an annonymous blogger who has deliberately choosen to conceal her identity, do NOT accuse me of not loving my son.

I knew from the moment I first saw Micah's photolisting that he was terminal. I knew from the day they presented his case to us that he would not see adulthood. The extent of Micah's condition, of his needs, of what the reality of parenting him would look like was nearly overwhelming. Micah had nearly every point on our "cannot handle parenting" list (if we had known about his profound autism we would have realized he actually had every point). However, we immediately realized that Micah was never going to find another family to adopt him either. We genuinely thought with proper medical care we could get him close to 18, but we also thought we could get him a new liver.

We adopted Micah because the thought of leaving that broken little boy to never know the love of his own family, and to leave him to die without that love seemed more monstorous to us than we were capable of ever being. We adopted Micah because he neeeded someone to love him and we weren't afraid to love him.

Micah had been with us exactly three months the first time someone advised us to give up on him. Our trusted attachment therapist brought me into his office after working deligiently with Micah for months and referring us to a Psychiastrist for what was ultimately diagnosed as Bipolar Disorder. He informed me that it wasn't that he didn't know I could save this child. After years of working with my children, he believed I could save any child I set my mind to. It was that he felt the price I would pay to save Micah was too great, too much for my other children to lose, too much of a personal toll I would take to walk the journey with Micah.

That was the only time I truly considered giving up on Micah. I was absolutelyl stunned to be hearing that the best advice that a trusted professional could give me was to give up. I had not yet learned that this was a common theme of my son's life. That first time, we decided to take it to a genuine family vote. We sat all of the children down and told them what the therapist told us. We also told them Micah's prognosis. In that moment, when I did not yet love this child, it was his siblings who reminded me what this was about. Unanimously, they voted that we would keep Micah and we would love him, no matter what the future held for him and us.

On that day, I promised my son that I would walk EVERY STEP of his journey with him. I promised him that when the day came for him to leave this world, I would be right beside him, holding his hand. I did more than keep that promise. My son died in my arms, as I released him to eternity.

Death is ugly and messy. CF deaths are even worse than normal death. Those who didn't love Micah DID run away from his death. I sent E away from his death, not because she didn't love him but because staying was destroying her. No one paid me to stay beside my child to his death. Quite the contrary, just like what was frequently counseled during his life, I was repeatedly offered the opportunity to walk away from his death. My sister offered repeatedly to pay to place him in an inpatient hospice facility so others could deal with his dying. His Palliative Care doctor offered to admit him to the hospital and put him into a sleep that would last unti death came.

Every decision I made for Micah in life AND in death was motivated by what was in his best interest, not from obligation, not for an adoption subsidy and most definitely NOT to be praised by a world that still cannot understand my son. Everything I did was because I loved my son. Only a monster would ever dream of accusing me of not loving my son. No one with a shred of humanity in their soul would be so arrogant and cruel as to think it would be okay to seek me out and tell me that I did not love my son.

This family gave Micah what the world could not understand. We could not heal the lifetime of pain and abuse that came before us. We could and did love him. Micah was precious and loved by every member of this family. He knew he was loved, the one thing I feared he would die without knowing. In the night before his passing, he used his "I Love You" song to tell me that he loved me. His last clear sentence was to tell his Daddy that he loved him. Micah was precious because he was our gift. He was loved because he deserved no less than every other child on the face of this earth, nothing more and nothing less.

If you cannot understand my son and my love for him, then just do the only humane and compassionate thing you can do. Walk away. I don't require any person watch my pain. I will demand that no person mock my pain, though.

Life and struggles

It appears that making false reports to CPS was not sufficient for the unstable, fired nanny. She has now targetted comments to my blog as well. If such comments show up, I will simply delete them. I will not engage nor respond. We have nothing to hide, and she was so kind as to send a colection of bizarre lies to CPS that I can truthfully state that the truth of my story and my parenting has been very recently vetted by the state with no concerns unearthed whatsoever. Trash calls CPS with false allegations, and trash is what her own actions proved her to be.

I will simply state a few facts. First, the state has vetted my family, compliments of the nanny and her lies. Second, we have passed adoption homestudies in three different states and been licensed as foster parents in two states. We are currently completing our fourth adoption in yet another state. We are an open book and the amazing children we are raising are a testiment to who we are as parents. We are not isolated. We are out and about in the community and more than willing to endure the scrutiny if necessary. Lastly, I have friendships that go back to my childhood. Close friends who are dear and tremendous supports to myself and my family. Though we moved away from support systems to provide the best for Micah, they continue to support us from a distance. Many of them have been in my home more times than I can count and have seen by myself and my nanny in action. Not one of those individuals has contact with the nanny. Not one of those individuals has found any truth in her accusations.

I will not engage crazy in my life. I cannot for the life of me figure out how I continue to attract it with my best efforts to avoid it, but my insane mother did teach me one very important lesson, to never engage it or you will feed it. She also taught me the meaning of the word projection. I've gotten quite good at recognizing projection in crazy when I encounter it. I just need to get better at avoiding crazy in the first place, thus why I established the entire boundary that I cannot and will not open my home again.

In the time since Micah died, I am learning that a broken heart is not a romantic term for mere grief. It is actually a biological response to losing someone you love, and losing a child is the worst kind of pain there is to endure. The children are doing well. Most of them are actually downgrading their therapy and acute loss does not seem to be a daily repsonse anymore. I, otoh, cannot force my tears and only feel free to release them in private and when I truly feel safe to do so. Instead, my grief is having some very frightening physical manifestations. I really thought that the emptiness would subside by this point. I no longer see and hear him except in my dreams. However, I still feel so deeply empty. Micah took so much energy and skills to care for that I often feel lost without his schedule to adhere to in a given day. Having sent all by one school child and the preschooler to school now, that emptiness seems to be magnified in ways I never imagined. I had intended to come and write about a broken heart today, and instead found attacks by my former nanny here. I will save that post for another day, apparently.

A season to rest and restore

I have now been diagnosed with three auto-immune disorders. Two of them have flared in the last year of Micah’s life and the choices I made to continue to reach out to other people, even at a time in our lives when we needed to be closing ranks. My father taught me all my life in a good Mennonite tradition that if you truly love God, then you pick up your cross at all costs and you live the example Christ set forth for us. I have lived my life transparently and always willing to give my last shirt to someone in need. I am no different in real life than who I am online, except I am tremendously shy until you get a chance to know me. For my faithfulness, I have been richly given nine amazing children, a family that doesn’t know what to make of me and a circle of friends I know I could trust my life with, as well as those of my children. Yet, I also have a set of enemies who either choose to not believe I am who I say I am, or who scorn the help I have offered them over the years. Sometimes, it seems those who wish me harm come in waves, waves that sometimes overwhelm me. In all of my years, I have only had a friend betray me twice. The friend from middle school and I reconciled years ago and I learned her betrayal had everything to do with her own struggles and not us. We are good friends now. So, in trying to figure out how to recover from this last year, its easy to realize that I must never again open my home in an offer to help someone. Many times I have offered the gift of hospitality both to friends in need and to struggling adoptive families who needed relief. I now realize that the types of people who would accept such an offer are not the kinds I have any business violating my children’s lives to help. What I am less able to find the answer to is how to not turn bitter and refuse to be the person God made me to be BUT still protecting my own health from consequences to those who aren’t always going to be better off because of my offer to help. I want to continue to touch other lives as God brings them to intersect with mine. Yet, I must protect the sanctuary my children need in their lives….and this newest diagnosis is teaching me that I must protect ME as well. I never thought I was invincible. I just thought I had a duty to live my faith in action anytime I could make a difference in the lives of others, and the current reality is that this is precisely what threatens my health, my safety, and my future. I am not super woman and the price I am paying now is my health. We are entering a season where we need to hold my health as precious. I got the lesson to take care of my health ten years ago. I just never got the tangible, real price I would pay for stress. The two things we are certain about is that in addition to considering our home a haven from all of that, we think this is the end of the idea of me returning to nursing and he going to medical school. My spirit may be strong and stubborn, but my body is not. I have grave concerns that if I use my gift of intuition for mental healthcare, I will absorb far too much from those I try to work with. We have just as much concern that I cannot do the solo parenting required for medical school. I don’t know how I get through this too jaded to open my heart to helping people again, but I know my main focus right now is to figure out how to get through this and reclaim my health. I won’t defend my character or my motives. When S attacked me verbally again this week, that is the realization I had. I won’t defend myself to those I thought were friends. I won’t defend myself to hurting teens who hurl misplaced pain at me because I am safe. I won’t defend myself to abusers who used my offers of help to avoid facing the evil they see in the mirror because they treated a child like a piece of trash. I already accepted the stress of mothering a hurt, abandoned and betrayed teenager. However, until my health is stable, the stress he brings is all of the stress I will bring into my life. Like Micah, his pain and brokenness is not his fault. Unlike Micah, he has not given up on healing. (He has a lot of things Micah lacked to heal too though.) Beyond these children, I am going to focus this school year on putting up boundaries and not following my natural instincts to reach out and help others. I genuinely pray that this does not fundamentally change me, but I have to now learn and accept that it’s okay to take care of ME and MY FAMILY and not carry the burden of the world and what I might have been able to do to help them if I had just extended a hand of support to them. I don’t think I have been wrong to live my life that way. I am just coming to accept that God is firmly reminding me the need to rest and restore and the dire price I am paying for not getting this lesson firmly and fast enough. Mentally, I’m in a really good place right now. Physically, I am anything but, and I have to remember my first ministry is to these precious children God blessed me to mother and this family that could not function without me.

Grief denied

I am not doing well. I want to be, but I am not.

The effort to remove the nanny that was not safe for our family has taken all of my focus and energy since right after Micah died. Dealing with the aftermath she created has taken even more time. She opted to revert to acting like trash when she was fired, complete with false claims to the state that we have had to defend ourselves from. The state was understanding and has closed the case in record time (2.5 weeks). The worker kept telling me to please not stress. However, only someone who has never had to undergo this nonsense would think it is even possible to not stress under the circumstances.

When I'm not stressed or angry, and I am angry a LOT right now, I almost have to stop and chuckle. II has long said I am my own worst critic. This nanny lived with us for a year and saw me at my most vunerable and worst. Yet, all she had to call the state with was blatant lies. All the things I convict myself for as poor parenting choices, either she didn't seem them as bad parenting or the state didn't see them as worthy of writing down.

I yell. I yell a lot. Sometimes I get so overwhelmed, I tell the children to leave the room so that they don't have to be subjected to the primitive yolps I let out in frustration, even. I have a tendency to monologue at my kids. I try REALLY hard to not, but sometimes I do so anyway. I get frustrated when kids don't listen to me and I overreact. I overreact enough that I frequently have to apologize for overreacting, in fact.

My worst parenting was after I caught II. I wasn't abusive of the kids and technically wasn't neglectful because II was there to care for them. However, I just checked out. For six months, breathing was more than I could handle of life most days. I frequently would be sitting in the living room and simply walk out and go to bed because the chaos of normal life with the kids would overwhelm me so much. Sweet A was so worried about me through that time. I think II was worried about me too. The grief process of that betrayal knocked me off my feet and out of the game for awhile.

This time, the stress of the betrayal of a friend and the removal of this nanny has knocked me down. I haven't checked out. I'm still functioning in every way the kids need me to function. What I am not doing is grieving Micah's death well. It's there. It's buried deep inside. I just don't feel safe to unpackage it and feel the emotions I know will overwhelm me. I can only hope that I can control how I have compartmentalized this so that it doesn't shut me down and I can continue to care for the children until I am safe to bring it out.

Next Wednesday, six of my children go to public school. This change in paradigm is so huge that it threatens to take my breath away. It is not scary as it was the last time I attempted this. Four of my children were in public school this spring with success. A has been in school for 2.5 years now and has thrived. He did most of last year in a virtual academy simply to avoid the ghetto school he was districted for, but he was still not involving me in his education. This year, I add two more children to the school goers.

The only children who will not be in public school is C, who has Asperger's Syndrome, severe Dyslexia, apraxia, Auditory Processing Disorder and an extremely high IQ. This twice gifted child will never fully integrate into a public school environment. I fully expect I will continue to homeschool him until he enters college. The other child still at home is J, who at three is too young to enter public school at this point. I was going to homeschool Ch and L until Micah died and I realized it was just too much for me now.

Given that I have made the leap and put L into kindergarten, I expect once J is old enough, he too will simply enter kindergarten instead of homeschooling. Some of me is sad that these last two babies won't get the same foundations the older kids did. However, life is simply different now than it was back then. I cannot be the mother to these two little caboose cars that I was to the gaggle that came before them. I am not that person anymore.

I need to be safe to grieve. I need to return to work. I need to finish my education and start a career path. I need to be here for the emotional needs of my children. None of those things allow me to be the mother I want to be and continue to homeschool them. I am sad at that change but at the same time I have some excitement as well.

Mostly, I am hoping that I can continue to fucntion until they are all in school so that I can finally be safe to unpack my grief and face it before it takes me down.