Forty Seven Days and Counting

Not knowing where I stand in my job has been difficult. The quarantine started on March 14th for us. Teale had a fever for 10 days, so my only focus was her. My job became secondary and I struggled to find the energy to even make a plan with my agency. Admittedly, I was probably avoiding what to do, hoping this nightmare would end quickly.  The frustration of how we would make it through, when we thought the quarantine would only be a couple weeks, was high. Now, we have been in quarantine for 47 days. Forty seven days, unbelievable, who could have ever imagined that this would go on so long? My job has completely fallen by the wayside while I care for Teale. I no longer worry about what to do, because I no longer think I can both care for Teale and work. The slow demise of losses has been the most difficult part of this journey. We’ve lost weeks of normalcy, prom and graduation are cancelled. It’s all so heartbreaking.
My only job now is to help keep Teale stable and happy. The loss of my own identity has been huge. I enjoyed my job & most especially, the people I worked with. To help families who also live in the struggles of mental health issues has given my life, with Teale, purpose.
Sadly, until this ends, Teale is my job.
Unfortunately, Teale’s ability to do much physically is greatly hindered by her CP and compromised right arm. Teale enjoys few activities and getting her to participate is often a huge challenge. She loves being social. She loved being at school and being at her after school program with her friends. That was a life was full of quality for Teale. Being home is difficult and lonely.
Teale has very little understanding why this is happening. The days are long, with little to look forward to. I can easily find many things to do, the list is never ending for me. If Teale would agree to help me, I may be able to improve this time for her, but sadly, she often refuses any mention of a different activity. She has fallen into her own patterns and changing her is incredibly challenging. Often she is on her iPad, listening to whatever song, she is currently stuck on. The irony of that is even tough to swallow. YouTube has an infinite amount of songs she could listen to. Plus, I’ve loaded numerous family music videos for her to watch. Mark’s whole family is talented in music. It is a huge part of our family life. Teale loves her extended family and the music they all create together. She watches the videos I’ve taped both for her & for prosperity, but, she often gets stuck on some random video on YouTube. She sits in the same place of the couch, rocking back and forth, repetitively playing the same song. Suggestions of other activities often get met with anger. She’s quick to switch moods, if God forbid, Mark or I, suggest the “wrong” thing. The challenge of these mood switches is incredibly difficult. All of us have PTSD, as she often gets angry, switching moods unexpectedly. The fear immediately rises in me, I wonder if I’ll be attacked or if she will start throwing things. Will this escalate into a full fledged rage or will it pass? Often we leave her alone, and she will be able to calm herself. Other times it escalates to a place where my fear is valid. She may bite herself to the point of having a horrific bloody arm, that looks like hamburger. It’s something we attempt to stop, but Teale is bigger than me. It’s all but impossible for me to hold her & prevent her from hurting herself or others when she rages. The rages are less often, we have her fairly stable, but they are still always a threat. We live in a constant fear of a switch from content to angry. Teale may never be completely stable mentally. I’ve all but excepted this sad truth. Walking on eggshells, afraid to set her off, seems to be our norm. The quarantine is difficult in many ways, for everyone. I like the saying that we are all in the same storm, but not in the same boat. The difficulty of keeping Teale stable in this, is tougher than I share. The not knowing, if or when this will end, seems to be my biggest issue. So as you look around, be kind, offer support and please know, some of us are really struggling to stay sane... 

An Unlikely Friend

In December of 2005, I remember sitting in church with my family and worrying. I tried to pray, but my heart was heavy. Mark and I had stopped running our in home day care together, because the chaos was too much for Teale. Her mental instability was escalating and in our day care, it felt unsafe to continue caring for others. Starting over was a tough decision at our age, after all we were financially stable. Running our day care was all we had known in our marriage. Mark and I had married in 1989 and had been working together ever since.
In Fall of 2005, we had made the difficult decision to send Mark back to college to finish his bachelor’s degree. We were hopeful after he graduated, he could secure a decent job to sustain us. I was still caring for a few children, but the huge loss of income was hitting us hard. Mark was working as a paraprofessional in our home district, which paid very little, but at least we had health insurance.
So as I sat in the church service, my mind was filled with worry. We had a huge heating bill to pay and our kids had dreams of waking up Christmas morning to gifts under the tree. How on earth were we going to get through this? Where was money going to fall from so we could could buy our three excited children the gifts they hoped Santa would bring?
There were many people in our church who cared deeply for us, but we were not sharing how difficult things were. Mark and I have always had much faith, but on that Sunday morning, I was not feeling hopeful. Faith had gotten us through many tough times, but this time, I was feeling lost. Mark is often known to say ~ “It will all work out.” But, he doesn’t just say it, he believes it. His faith is strong & he truly believes that so long as we have each other, all else will be ok. His love keeps me going in the toughest of times. We have never gone without basic needs and that in itself is more than most of the world. Mark and I wanted the best for our children, as all parents do. Somehow I had to believe it would all work out & our kids would forget these meager times. I knew the gifts were not the most important part of Christmas. I knew the love of our family would get us through this financial crisis. But, even when you are able to rationalize loss, to gain a better future, it is still a struggle in the moment. The thoughts of how my children would feel on Christmas morning, with not much under the tree, kept floating through my head, so I prayed for peace in my heart.
The service ended and as we turned to exit the sanctuary, a member I didn’t know well, handed me an envelope. It appeared to be a Christmas card & she directed me to open it at home. So I put the card in my purse & we chatted a bit. After we got home, I opened the card. It was a Christmas card. To this day I can still see the picture of a lovely dove holding an olive branch. The word “Peace” in beautiful calligraphy, the irony was not lost on me. I opened the card and there inside was was a folded check, in the memo, the words, Merry Christmas. The amount was enough that I knew I could now buy our children the gifts they dreamt of. I immediately called Jean. I explained how I had been praying in church for a solution to our financial stress. Until receiving her generous gift, we were being forced to choose between paying our heating bill or getting the kids gifts. She had given us the freedom to do both. Our new friend explained that she had prayed too and felt a calling to help us specifically. How overwhelmed I felt, knowing our prayers were heard and also answered.
That week I went shopping, I bought a few gifts for our children and something special for our new friend, Jean. Our friendship grew from that day. We would talk on the phone, I would write her cards or letters, we would visit with each other and of course we would chat at church. Jean was an unlikely friend. She had very little patience for children and her family seemed to be sparse. She had been married, but never had children. We became her adopted family and her generosity continued for years to come. Even after we were more financially stable, Jean always gave us a generous gift at Christmas and I would try to find her a gift she would enjoy, usually leaving it, like Santa, at her door.
This past week, our friend, Jean, slipped away from pneumonia. When I received the call, the first vision I had was of a dove and the word, PEACE. Jean was someone God put into our life at a time we truly needed to be reminded of His love. She will always be a reminder that God comes to us in unusual ways. From a stranger, who became a friend, she taught me that faith is real. 

What I Learn

Often parents like me focus on what we can teach our special needs children, but I'm often reminded that I have learned far more from Teale than I have taught. She's taught me to appreciate the little things. She's taught me that a cup of coffee & the silence of the morning is priceless. That hearing the birds sing, shouldn't be taken for granted. She's taught me that friends are not as easy to come by as I once believed and that I should cherish mine with all my  heart. Teale has taught me that when there is a will, there is truly a way. She has taught me letting go & never giving up. Teale has taught me to be thankful for what I have & to be faithful to others. She has taught me to never forget the people I love who have moved on or died. Teale has taught me to believe in the unseen & to trust what my inner voice says. Teale has brought me closer to God & she has taught me love that is unconditional. Teale has taught me hope, faith & love, like no one else.

Grateful & Blessed

I am often reminded how Blessed I am to have Mark as my partner. As we approach the 14th Anniversary of my Mom’s passing, I am reminded of one of those times, he knew what I needed, more than I did. On 4/22/06 we had been to the hospice my Mom was at in the morning with all three kids. My siblings had gathered there to discuss her obituary & funeral service. We knew she was at the end, but we didn’t know how close she actually was. The hospice nurses know the signs when a person is close to passing, so we were counting on them to let us know. After seeing my Mom & having the meeting, Mark & I decided to take the kids swimming at the Y. When we got out of the pool, we discovered several messages that Mom was getting closer to passing & the nurses thought there were only hours left. Mark had recently decided to rejoin a Wedding/Gala Band he had taken a break from because the girls were too tough for me to handle alone. Teale had become quite unpredictable & explosive, so we knew it was a time in our life we both needed to concentrate on our family. As we came out the other side of that stage, we had decided Mark could rejoin the band. The money was decent & Mark needs that musical release. Unfortunately, the very first gig he had agreed to do, was that night. Our neighbors agreed to help with the kids, so I could be at my Mom’s side. Mark, in my opinion, needed to go to the gig. It was way too late to find a sub & it could be several hours before my Mom passed. He could come after the gig. Plus, if you know me well, I was sure I could do this alone. Well, Mark would call the band leader behind my back & tell them he was sorry, but he was going to be with me. I have thought about this, more times than not. Mark was with me as my Mom took her last breath at approximately 10pm. If he had gone to the gig, he would have been in the middle of it. His being with me, was exactly what both of us needed. I can’t imagine not having him at that very difficult & poignant moment of my life. I can’t imagine trying to describe the honor it was to be there next to my Mom. I was so proud to be with him as he said goodbye, he leaned over and asked my Mom to say hello to his Dad for him. Maybe I needed Mark or maybe he needed me? Either way, it was & will always remain one of the most precious moments of my life, when we stood, hand in hand, as my Mom’s soul departed...