Grace for the Journey

Today I am thinking about the way God has led me through the journey of being the mother to a "miracle" daughter. It has been anything but normal. In August of 1986 my water broke when I was just 13 weeks pregnant with her. The remaining 15 months of pregnancy were extremely difficult, nerve wracking, faith strengthening and surreal. In the 3 weeks before she was born I was told that i must accept that it was almost a certainty that physical deformities were something I should prepare for. When she was born at 28 weeks with a perfectly formed body, the word miracle was thrown around with great sincerity from doctors, nurses and just about anyone who knew our situation. My husband and I were absolutely in awe at just how beautiful she was, all 2 lbs and 2 ozs of her!

The first year of our daughter's life was filled with doctor appointments, hospitalizations, surgeries and enormous doses of stress of every kind, including financial stress. When a position at our church's Christian school opened and I was asked to consider it, my husband and I saw it as providential and were very grateful. Though I had always intended to stay home while my kids were young,I realized very quickly that some dreams must disappear when reality presents itself. In the process of facing life head on, I discovered that I loved teaching and our family experienced a new and much needed sense of order and predictability.

As time went on life brought us many challenges but for the most part our "miracle" baby grew up just like her peers. Family memories are full of time spent with grandparents, aunts,uncles and cousins at holiday and birthday celebrations. Bedtime stories, family movie nights, piano recitals, a paper route, books, music, sibling rivalry and all things girl-like, filled her life. Then came adolescence.

We were, I was, totally unprepared for what that experience would bring to into our daughter's life. We were,I was, equally unaware of the enormous impact it would make in all of our lives. We watched as our much beloved daughter went from being an A/B student, having a lead role and singing a solo in a school musical, going on a missions trip to Mexico and seemingly loving life,to secluding herself for hours and hours in her room in the dark, binging and purging, cutting herself and eventually attempting suicide. After 18 months of therapy, the grace of God came to us as we realized that if we didn't find intense expert help for her in a hospital, we would lose her. So at 16, she went into an inpatient program 2 hours away and when that wasn't enough, she was placed in a residential program a thousand miles away. She's been in treatment in varying degrees since.

As parents we have had to come to grips with the reality that once mental illness entered our lives,the opportunity to influence our daughter has been subject to its presence. The most "normal" situation has been anything but normal. As this decade comes to a close on her 26th birthday our life has been lived on edge with a continual learning curve.

We have come to understand that though her arms,legs,feet,and hands were miraculously perfect upon her arrival,the biochemical changes that took place in our daughter's brain during my anxious and stress-filled pregnancy, premature birth experiences, surgeries and following hospitalizations, greatly altered this unseen part of her physical body. Her brain's capacity to go through the adolescent growth experiences in a "normal" way was severely compromised. As if that wasn't enough, we learned that our "bonding was very messed up". Though we were bonded to her as best as we new how to be,it was not the same attachment we knew as parents with our son. The last 3 months of pregnancy prepare parents to receive their new baby and labor and delivery all play a role in the important process of attachment. We not only missed all of this with our daughter,we didn't even get to hold her for a month. Current research is showing that the parts of the brain that regulate emotion are actually unable to develop like they are intended to when the bonding process is interrupted like this. We were so fixed on her simply being born alive and with all of her bodily parts in place that we didn't even think about this part of the situation. Today's neonatal units provide support to families in our situation but back then no one realized just how extensive the damage could really be to these children.

Today we find ourselves the parents of a 26 year old woman who cannot seem to find her way in the world. Today we are not sure how we can continue to hold out hope. It has been over ten years of struggle and sacrifice and we are not getting any younger. She spent time in a locked down behavioral health unit a few weeks ago after going to her therapist in a suicidal state. We had hoped she would follow a plan for intense outpatient therapy. She did not. As a result, we have realized that it is time for us to put some boundaries in place in order for us to continue to live our own lives.

The really rotten thing about all of this is that we don't actually know what to do for HER anymore. Our counsel is no longer valuable to her. She lies to us while looking us in the eye. She steals from us. Overall most of her behavior indicates that she doesn't care if we trust her or not. She now seems to simply use us as the bridge from one crisis to another. Having set her up in 3 different apartments, one with her husband after a beautiful wedding, our financial resources are diminished. We have to stop helping her. And, though I have "let go" seemingly endless times, this time it is taking place in a much deeper part of me.

This last year I had 5 surgeries in 8 months. One of those surgeries was supposed to be an overnight experience but complications arose five days later and after two more surgeries and nearly dying from infection, I survived the ordeal. Prior to going into the surgery in the first place, I was feeling the effects of a very stressfilled job. Though I'm very good at it, I simply discovered that working with students with emotional/behavior disorders was just too much for me. I now realize that finishing school, moving 1500 miles from Utah to Minnesota and acquiring a new, stressful position mid-year all was too much for me. On top of that, last July(2011)after a wonderful family vacation with Stephen and his wife in Texas, Hannah left our home with no job or resources to set up a life for herself in Utah. She simply left notes on our refridgerator telling us she loved us but had to leave. Shortly after her arrival she discovered that she had to have major leg and knee surgery. Her then boyfriend agree to support her and take care of her while she recovered. It was just surreal. It was glaringly apparent that I had been strong for too long by the time I reached the date for the Nissen fundoplication surgery I had done last October.

The week before I went into surgery, I began to have panic attacks, something I honestly thought were pretty much make-believe prior to actually having had one. I nearly passed out several times and without the steady presence of my husband, would clearly have had to admit myself to the hospital. Once the surgery failed and I was transported by ambulance for a repeat one five days later, I began to have a complete emotional, physical and psychological breakdown. A close friend of ours was unemployed and graciously came up to our home to help Dean take care of me. He's a spiritual giant to us and we're honestly like family so he pretty much saved the two of us that week.

By the time Thanksgiving came around I thought I was just feeling a bit blue and went to Nebraska for some time with friends and family. Unfortunately I was so sick that I pretty much stayed in bed most of the time. When I began coughing I headed to a doctor there. The doctor informed me that a plueral effusion I'd had after the second surgery had returned. I had it drained there - not a fun process. It helped briefly. I ended up in the ER a few days later with the same diagnosis. Dean decided it was time to pick me up and we headed back to Minneapolis. A chest tube was put into place and after two days a thoracic surgeon was called in. I endured the most difficult and painful surgery I could ever have imagined that day. The plueral space had become severely infected and my lower left lung was collapsed. It had been collapsed since the second surgery. In Nebraska I had been staying with the same friend who'd ministered to me so much the month before. He and his wife were the safest place on earth for me during those really tough days. The night after they took me to the ER, I asked them to pray for me and on their knees beside my bed the night before Dean came to pick me up, they cried and asked God to save my life. He did. In January I had yet one more surgery - my gall bladder, likely the culprit from the very beginning, finally had to be removed. It was just surreal.

By the time I started to recover from all of this, I knew I needed help with my own therapist. I started meeting weekly with a rehab psychologist in Minneapolis. It was a very dark time and physically so very painful. My body was so weak that one night after a bath I literally could not pull myself out. Dean had to come in and literally pick me up. All I wanted to do for weeks on end was end my life. I wouldn't get to the poing of creating a plan to carry out that death wish because I couldn't do that to my children, Dean or my friends but life was incredibly dark in Minnesota - both literally and figuratively. Thankfully, we had a very early spring, Dean, my therapist and time began to heal me.

As I write this blog entry now in October, days away from the anniversary of that one fateful surgery, so much has changed. Hannah was away from our home until April when she called and said she was in need of treatment and needed to return to Minnesota because our insurance wouldn't pay for her care in Utah. The boyfriend had left her and moved home to Los Angeles. She was leaving and would arrive the next day. This is how it is with her. She was with us from April until a few weeks ago. During her last hospital stay, she indicated in every way that she was desperate to get intense treatment and figure some things out. Her meds were adjusted and plans were made. Then came the cousel of the new man in her life. The man who used to deal with depression but "got over it" by saying he was just "done" with it. We left for a weekend with a friend and returned to her departing once more, with a new job, a new relationship and a new place to live. We both knew the possiblity of her following through with the hospital's recommendation was pretty much zero at this point.

We left last weekend and locked our doors and changed the code to our garage door. Somehow she figured it out and went in anyway. Even after we told her we would like her to wait to come over when her dad returned home. She left evidence of having been in the house while Dean was at work having crawled through the dog door into our dining room. We have to deal with this when I return from caring for my mom who had surgery too. I think we both are very aware that we are in need of a new grace to allow her to bear the weight of these recent decisions. As I have written this out, it has shown me one thing. Being REAL requires suffering. Doing the right thing often takes suffering. Someone said - I read so many quotes on Facebook and in books I read, I can't begin to remember who it was, but they said, "When you have finally suffered enough you will do what you need to do." I think I qualify.

This is a new phase in this journey of parenting a "miracle daughter", a daughter with mental illnesses unseen and unrecognized by family, friends and often our society. We will be shown what to do when we need it as we always have been. I feel this enormous sense of peace flooding my heart because I know that I am letting her go in a deeper way than I could ever have done before. It has been rough, it will likely continue to be rough but I will do well. I will be resilient and I will know the Grace that covers me deeply and fully. Amen?