Saturday, October 6, 2012

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.

Monday, October 1, 2012

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 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


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.


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.