Thursday, August 16, 2018

Grief and Hope

     It has taken awhile for me to write this. It took me a while to get started and several attempts to finish it out. For me, writing is a therapeutic way to process. But it takes vulnerability and honesty to be of any benefit and that is not always comfortable. For the past two weeks I have chosen more of a retreat stance. I feel like I have been holding my heart tightly in my hands, trying desperately to keep all of the shards in place. I haven’t wanted to let go of my grip because I know all of those fragments will spill apart and when I do, it will hurt deeply. I am aware that it is broken, but instead of admitting it, I have been suspended in the early stages of grief, somewhere between shock and denial.

     It doesn’t always matter how long you know something is coming, sometimes it still knocks you off your feet. That’s how I have felt since July 25. I knew the time would come for Suzie to enter long term care, but there is no real way to prepare for that or to have any idea what the impact will feel like. This past Friday, August 10, I finally began loosening my grip. Well, honestly it felt more like my fingers were pried open. Either way, I felt the stabbing pain that I had been avoiding for 2 weeks. Don’t get me wrong, there has been a cloud of sadness hanging over the Mercer home since Suzie left, but I think we have all been in a state of disbelief and shock.

     I have written a lot about Suzie, but I could write volumes on this precious child and barely scratch the surface. When Suzie came to us in 2014, we were informed that she had the diagnoses of PTSD, ODD, ADHD and Developmental Delay. It wasn’t long after that OCD was added to her alphabet soup of diagnoses. Her first psychiatrist seemed kind of odd and I had a hard time following his train of thought. Reflecting back, I realize how brilliant he was. He was the first person to tell us he believed we were looking at pediatric bipolar.

     We kept journals of her moods over certain periods and the cycles became so obvious. There are the low periods. One of the moments that still hurts to think about is the time she told me she wished she couldn’t breathe anymore. She told me she hated herself and everyone around her. When I tried to tell her I loved her and that I wanted her in my life she told me, “Just give up!”

      Then there are the manic periods. She has bundles of energy as it is. I have often joked about strapping my fitbit to her for the day, but I don’t think it can count that high. When we are in the manic moods we see the delusions of grandeur and the invincibility. She sleeps less, eats more, and is even more impulsive. But underlying this entire phase is a constant state of agitation. It is like a raw nerve that is exposed 24/7.

     This is the stage that we often have the most severe meltdowns. I have seen my sweet, smiley and loving child lose all control over herself. Imagine the hulk, but smaller with blue eyes and strawberry blonde hair. I have looked my child in her eyes and wondered where she really is. I have been bitten, spit on, slapped, pinched, kicked, screamed at, and told I was hated. I have also seen her hit herself, slam her head into the wall, and punch out a window. It is like a feral animal lashing out because it is scared and hurt and feels backed into a corner. Sometimes this has happened over arguments with her brother, sometimes it happens because she doesn’t get here way, and the most puzzling is when it comes out of nowhere. Seriously, completely out of nowhere.

     Sometimes I see it coming and we can redirect. We do deep breathing or talk it out to avoid an actual meltdown. Sometimes it is like being hit by a Mack truck that you never saw coming. I have videotaped her before and shown her the footage later only to be asked, “Who is that?”

     The thing with pediatric bipolar is the moods can cycle much quicker than in adults. Sometimes several times in a day. But it isn’t all a hurricane of moods, we have times where things are great. The kids get along. They play together. There is laughter and growth and peace. It’s just those don’t last near long enough. With her quick metabolism and being in the time in her life where she is growing like a weed, it has made getting meds to help her stabilize nearly impossible.

     I have shared over the last year about Suzie’s three acute inpatient stays at a behavioral health hospital. After her second stay our psychiatrist recommended long term care. He explained that they had done a lot of testing with Suzie and some of her tests indicated we were also dealing with a mild intellectual disability (she would have formerly been diagnosed as mentally retarded). Suzie has been on the border of that classification for quite awhile. We knew her mom was intellectually disabled, but while Suzie and Will were behind when we got them, they were only 5 and 6, so the gap seemed small.

      Will has continued to grow and learn. He is still a little behind, but is reading well and is catching up. Suzie hit a wall towards the end of first grade. I had been so excited all year at how she was growing and then BAM, it just stopped. So she repeated first grade and at about the same point, she hit the same wall. Partway through the end of second grade, we realized the gap we saw in the beginning was now a very wide chasm.

     This is when our psychiatrist brought up the intellectual disability diagnosis and told us that combined with a mood disorder this was going to present a lot of challenges in Suzie’s future. He felt like a long term care facility would be able to really delve into the trauma therapy that she needs while monitoring her medication levels and moods from an intensive approach. They contacted all of the nearby facilities and Andrew called dozens more. We were told it would probably be August before they got her admission done at any of them. So we were surprised when they called at the end of July and wanted us to bring her the next day. We negotiated so that we could take her to the beach. 

     The hardest part was that since her last inpatient stay, she had really been much more stable. We had some good trips. She seemed happy and at peace most of the time. There were a few melt downs, but nothing terrible. But just about the time I would start to doubt that we needed to do long term, I would see a glimpse of the angry Suzie and it would remind me we couldn’t afford to not try. 

     The facility she was accepted into is a little over an hour away. (It was our top choice). She goes to school and has special curriculum that is designed for her needs. They are working on behaviors and feelings, while doing some intensive counseling and group therapy. We have family therapy meetings at least twice a month. They have visitation every Saturday and Sunday and we are able to take Albany and Will. For the first two weeks we couldn’t visit. We had our five minute phone calls each night, but sometimes she was asleep before her phone time and often she just wanted to talk to each person quickly and ask us to pray for her and then she would let us go. After the 30 day mark we will be able to take her out to eat or do something around town for a few hours on a day pass. If that goes well, her psychiatrist and therapist will determine if she is ready for overnight passes. She only gets 18 overnight passes for the entire 6-12 months she is there. They only grant them for 1-2 nights at a time, sometimes a little longer over the holidays. So we have to be sparing with them.

     Last Friday was the end of the 2 week waiting period. Andrew and I went to attend a family therapy meeting. It mostly involved going over what they had worked on so far and verifying some survey answers Suzie made to get an accurate view. After the meeting we got to hang out for a little over an hour and eat lunch together. It was such a sweet day. She was happy to see us. She told us about her friends, the food, and her schedule. She seemed peaceful and happy.

     It was the last ten minutes of the visit that I could feel her demeanor shifting. She got quiet and began to withdrawing. As we walked toward the door, I saw the tears in her eyes and the pain on her face. It was everything I could do not to scoop her up and make a run for it. She hugged us fiercely, gave kisses, and cried as she told us she loved us.

     But when I stepped out of the building after our goodbyes, clutching the fragments of my heart felt like too heavy of a load to bear. As I let go, I could feel every emotion I had kept at arm’s length over the past two weeks. Facing the reality of the foreseeable future brought a flood of tears and deep ache. Six months to a year. That is such a long time. I haven’t lost the sense of peace that it is the right decision, but even that doesn’t erase the pain.

     The swirling of emotions and questions have taken over most of my mental space. I wonder if she got all of the shampoo out of her hair. I wonder if there was something I missed or could have done that would have made it so we didn’t have to do this. I wonder what she is doing right now. I will wonder that again 10 minutes from now. I wonder if this is really going to help. I wonder if we are going to lose the ground we have made in attachment. I wonder if someone is giving her hugs. And I wonder…

     If I were to be honest, I would say more of that is worry than wonder. And just like I have to let the broken pieces of my heart fall apart so they can be mended back together, I have to let go of the worries. If I keep trying to carry the worries around, I don’t know that I will have enough strength or bravery to deal with the grief.

     I miss Suzie. We all miss the energy and warmth that she provides in this home. We are all grieving her absence. At the same time, I also truly believe that this is the right decision. If we get to her teenage years and haven’t been able to tackle the trauma, work on the behaviors, and stabilize the moods… I honestly don’t even want to finish that sentence. But the right decision isn’t always easy and it definitely isn’t fun. So we press on, acknowledging the pain and leaning on one another to keep moving.

     I will close with a couple of things that have encouraged us. The first is that I have talked with a couple of different people from different backgrounds who have experiences with the facility Suzie is in. All of them have had great things to say about the program and that there have been successes. That has brought so much peace to us.

     The second was meeting Suzie’s therapist both times. I was so impressed by the way she asked questions, the notes she took (especially on the things other people have felt was trivial), and her willingness to think outside of the box. After hearing from everyone how good Suzie had been behaving, I admitted to her that I was afraid they were going to tell us nothing was wrong and send her home. Her therapist looked me in the eye and smiled and said, “This is normal. We honeymoon for the first couple of months, but trust me, I have already seen glimpses of she is dealing with. She is right where she needs to be.” 

     The last encouragement is that Suzie seems happy. I know she misses us and is so excited about getting an overnight pass to spend the night at home. She is enjoying school, has made friends, and likes her teacher. She excitedly told us last night that her team won a volleyball game and she got a piece of candy yesterday.

     I guess that pretty much sums it up. Grief, sadness, peace, encouragement, and lots of hope. If I haven’t returned your call or text, I apologize. I promise they have meant the world to us! As I said, I have been in retreat mode lately, but am finally coming out of hiding. Signing out with lots of love, Jaimie

Sunday, May 13, 2018

An open letter to my kids' bio mom

You have been on my mind a lot today. I am sure it is because it is Mother's day and without you, I may have an only child.  Not that life would not have been complete with just Albany.  But without you, I wouldn't have the privilege of raising this sweet blue eyed boy and this feisty, freckle nosed girl. Albany would not have grown in resilience, empathy and bravery the way she has. 

There are so many things I wonder about.  I wonder how you are doing.   I wonder how often you think of Will and Suzie.  I wonder about their little half sister.  I wonder how badly your heart must ache on days like this.  

Despite the negatives and the trauma that was caused because of you, my heart hurts for you.  The deck was stacked against you in so many ways that was never fair.  I hate that people weren't able to help you in a way that would have helped you overcome your disabilities, to get you into a safe environment, to provide you a sense of stability and health, and to teach you how to be a responsible parent.  I am sorry you never had a chance to watch them grow up, to see them become more independent and to succeed.  

I remember your face clearly at the termination of parental rights. Even though there was a lot of chatter from your family members directed at my husband and I, you seemed somewhat at peace that it was in the best interest of the kids for you to let them go so they could get out of the family and dysfunction that you were raised in.  So they could be adopted. So they could have a chance. 

Some people act like we are heroes or saviors.  We aren't and we are humbled by the realization that we had something you never did.  Privilege.  

Both my parents and Andrew's have stayed together.  They created safe, stable environments for us to be raised in.  They were aware and involved enough to try to protect us from those who would try to steal our innocence or take advantage of us.  And while being protective isn't always enough, we were fortunate that nothing happened anyway.  Education and hard work were modeled for us and we were encouraged to be our best selves.  We were raised in families where at least our basic needs were met and we always knew we had a safe place to stay, meals to fill our bellies, and medical care.  

The way I was raised was completely out of my control. If I hadn't been given that foundation, who knows where I would be or what I would be like.  I do know from conversations that you were not provided these same opportunities or privileges.  I am sorry for that, because it seems like that it all kind of led you to an impossible situation.

I am thankful that you ultimately had their best interest in mind, at least towards the end.  I pray that you are at peace and know that your babies are taken care of to the best of our ability.  They have an amazing big sister who provides so much love, nurturing, forgiveness and grace to them.  I also pray that those in your life now help you to be the strongest and healthiest you. 

I will forever be grateful to you that you brought these amazing children into the world.  I promise not to take it for granted or to miss out on the sacrifice and heartache that you have endured.  

With love,
Jaimie