Surrounded by her husband and five of her children, my Grandma Barbara died Friday night. Intellectually, I obviously understand that we all die. I understand, as I look at the many beautiful babies filling my Facebook news-feed, that one story has to end for another to begin. Knowing this doesn't make the pain of closing a beloved story any easier though. Her story was, of course, a significant part of mine.
I have a gigantic family; I am not exaggerating. I honestly do not know how many cousins I have because there are so many generations in our close-knit family, yet my grandmother never made me feel like a face lost in the crowd of ever-expanding family. This was not because I was more special than the rest; she loved everyone and made sure we all knew it.
She had the sweetest, gentlest voice I ever heard. I do not recall a single time that she raised that voice in anger at me. If she had, I know it still would have sounded as sweet as sugar.
When I was six-years-old, I lived around the corner from my grandparents. I decided to run away from home, and it was their house I was going to. I just knew she and my grandfather would love to have me! (That darned trash-bag full of toys ripped as I dragged it a full two doors down as my parents watched, and I didn't make it to my destination.)
She loved to cook and bake for her family and remembered the favorites of them all. Growing up, she used to bake me angel food cake and her famous strawberry cake. One of my most cherished memories is when she came to visit me at my home in Texas. She stood in my kitchen and taught me how to make that strawberry cake. I felt like I was inheriting the keys to the kingdom!
We never had a conversation that didn't include her telling me how proud she and my grandfather were of me. I never doubted that she was genuine. She believed in me; she bought me my first hard-back book, Alice's Adventures in Wonderland, when I was seven years old--a book I still have and cherish.
She has been ill for quite some time; her death was not a surprise. When it became clear that her death was imminent, my mother was at her bedside. She offered to hold the phone up to her ear so I could say goodbye. I could not do it. I was ashamed of my weakness, but I didn't have the words. It hurt too badly, and I didn't want to accept the fact that this sweet woman who I loved, who I used to spend the night with, who made the best pancakes, who patiently listened to the repeated and long (though interesting) stories of my grandfather, who always had a twinkle in her eye, who loved us all, was truly gone. When I got the phone call on Friday night that her suffering was over, one reason I cried was that I did not say goodbye or take the opportunity, one last time, to tell her that I loved her.
That night I dreamed about her. She came to me, and though I do not remember a word being spoken between us--she smiled at me with that ever-present twinkle in her eye and held my hand. I knew she was telling me it was okay and that she loved me. When I awoke on Saturday morning, I had a tremendous feeling of peace. I know it sounds ridiculous, but I believe that she was with me, comforting me; that is who she was.
Grandma, you are loved. Thank you for a lifetime of happy memories, delicious food, and love.
I have a six-year-old, beautiful daughter whom I love immensely. I am extremely proud of her high intelligence, creative spirit, and artistic talent. She has been blessed with many enviable gifts, but she is also mentally ill, and of my three special needs children, by far, the most challenging to raise. Truthfully, I often find myself terrified of what she could be capable of.
My daughter was a drug-exposed baby who was brought to me when she was a day old, and I loved her immediately! She was never an easy baby though. She suffered from severe acid reflux, which caused her to projectile vomit constantly. She struggled with sleep, had some delayed development, and although she was one of the prettiest babies I had ever seen, as she grew, she also became the most difficult to manage.
Of course, I chalked it up to her age. She was just a bit more naughty than most toddlers. I believed/hoped she would grow out of it. Sure, I knew her birth history, but I also felt confident nurture would outweigh nature. I did not have a moment's hesitation in choosing to adopt her and her brother. If I had a crystal ball that could see into the future, I do believe I'd make the same choice. I love her very much.
What I am finding, six years in, is that nature is not a force to be reckoned with. My daughter is mentally ill. Nothing I do will ever be able to change that. Nothing. And some days, on really tough days, that truth is hard to face.
Over the years, she has made momentous progress. She was completely out of control for so long, and now, she is able to function relatively well. I try to remember that when the really bad days come. My friends and family members remind me, too, and that helps.
Still, the fear is there.
I struggle with anxiety. I fully understand that my brain leaps to wild conclusions at times. I use self-talk to calm myself when I believe I'm being ridiculous. I also talk to others about my fears to gauge how realistic my concerns are. When it comes to my daughter, it is not often that I am told I am being ridiculous.
My daughter has, among several other diagnoses, Oppositional Defiant Disorder; she is impulsive, defiant, hyperactive, dishonest, aggressive (both physically and verbally), and lacks empathy and the ability to feel remorse. The school's official label for her: ED (Emotionally Disturbed). I'm not bothered by any of these labels or adjectives because they are our truth.
To illustrate what I'm saying, I'll give you one example from about two months ago. She and her brother were arguing. It appeared to be a very minor squabble. They were in the living room; Tom and I were in the kitchen, a mere eight or ten feet away. We didn't even pause our conversation because they weren't even raising their voices. Suddenly, we heard loud screaming and crying. She had bitten his lip! I'm talking almost all the way through. There was blood everywhere, and his lip was severely swollen. She was so calm and appeared to be genuinely shocked when I sent to her room while we examined him. After making sure he was okay and didn't need to go to the hospital, I went to speak to her. I tried explaining to her how severely she had hurt him, telling her that he would have trouble eating, smiling, brushing his teeth, etc. for quite some time. She had no reaction, no remorse, no concern for her brother at all. Trust me when I say she is very intelligent. It is, most definitely, not a question of IQ.
For weeks after the biting incident, I was afraid to let the children out of my sight. I know parents often joke about there being trouble when the kids go quiet in the other room, but I don't think most feel the terror I did in the aftermath of that evening. Luckily, it was an isolated incident, and things continued to go relatively well for quite some time.
This week, she had a rough day at school, a very rough day. She had to write a letter to the cafeteria workers that the teacher and I both had to sign to apologize for her lunchtime behavior. I also had her write a letter to her teacher to apologize for her classroom behavior. Although we went through each and every bad choice she had made that day (it had gotten so bad that she had to be removed from class), she actually did not believe she had done anything wrong. I truly felt hopeless that night.
Once again, friends and family consoled me and told me to remember her progress. I was encouraged to not give up. And I'm not.
She is worth fighting for.
I got on the phone the next morning with the psychiatrist, and we are going to make some medication changes. She also told me that perhaps it is time to move past play therapy and on to cognitive behavioral therapy. I called the play therapist and asked her to help me with the transition. The problem? They currently have a very long waiting list. I'm waiting for a call back before I start searching elsewhere. I am in constant contact with her teacher. I will call for another ARD (Admission Review Dismissal) meeting if necessary to discuss other classroom accommodations for her, like increased time an aide is in the room with her. We started a new evening routine at home to try to help. And, of course, we began a new sticker chart, too.
I will NOT give up on her.
It's hard though. I have moments of hopelessness and despair. It's very exhausting. And sometimes, although I know people have good intentions, they actually hurt my feelings because it feels as though they don't believe or understand the difficulty of our reality. I have to remind myself that very few people I know have experienced anything like what we live all day, every day in this house. Of course, they are doing their best to try to help me through tough moments. Sometimes, though, I think a sympathetic, willing ear is what would be best.
You see, the reality is that no matter the quality of the therapy she has, the number of medications she takes, the strictness of the routines we follow, the number of specialists she has, the support systems in place, the positive reinforcement methods we try, the books we read, the lectures we deliver, the discipline we give, the doctors we visit, the prayers we say, the love we show...she remains mentally ill. We have no idea what the future holds for her. That is a truth that is sometimes difficult to accept.
I'm not looking for advice, though if you want to offer some, of course, I appreciate it! This is just what's on my heart right now, and I felt the need to write about it. If you're in a similar situation, take solace in the fact that you are not alone. Too often mental illness is brushed under the carpet, which can make reaching out so much more difficult.
I also ask that if you are not in a similar situation that you show compassion to parents like me. None of my children look like they are not typical children. If we go to a store, I know that I can look, in the eyes of so many, like a "bad," overly-permissive parent who has no control over her children. If one tantrums on the floor, runs away from me, yells, throws things, or removes a mannequin's arm (don't ask), don't immediately jump on to Facebook to report what a horrible mother I must be who needs to spank my child immediately. Instead, give me an encouraging smile, try to engage my child with a "hello," or say a silent prayer for us. The smallest act of kindness can make all the difference in a moment like that.