Our Dreams are Similar

Many years ago I wrote a letter to the editor about my daughter Teale. I was worn, she was in a rough stage and my family was doing their best to get through the crisis. Her behavior was more explosive than usual and her sleep was off too. We were barely keeping our heads above water and desperately needed a break. Our being in public with her was a double edged sword, often getting her out of our house was helpful, but it was also very risky. We not only try to protect Teale from the cruelness we may encounter in public, but we also try to protect Beau, Gwenn and ourselves too. Then there are my personal feelings about not wanting friends, family and the public to have to deal with the Hell we deal with on a regular basis. There are many feelings I have when it comes to raising Teale in this world. I often want to protect her and protect my family from the cruel comments we have encountered when we are in the community with her. Staying home can be easier because no one else sees what we live. At home, no one sees the embarrassing moments, the huge rages, the rude behavior. I believe dealing with other people's feelings is probably my biggest challenge. At this point, I'm pretty confident in my role as Teale's Mom. My skin has gotten thicker with all we've lived. But that is NOT the only thing that has happened to me. I'm not just damaged from being Teale's Mom, I'm also improved. I believe I have learned to love deeper, I believe I have learned strength and resilience, among many other positive qualities. I know I laugh much and what might bring another person to their knees, just makes me stand taller. I believe I truly appreciate the little things more than I did before Teale. But the thing that stands out far above the rest, are the friends we have made along the way. We have had so many people put in our lives who we would not have had any reason to meet without Teale being in our family. I think about the teachers, therapists, doctors and families of other special needs people. Many of these people are such integrated parts of my heart now, I could never imagine life without them in it. I think we have taught much about special needs by our just living a normal life with Teale. By our not letting the risks of "what could go wrong" ruin our trying. Sure we have been burned many times.  There have been several events that we knew before we went, that we should not put ourselves in the situation. We've also been wrong, we've gone somewhere with confidence or with fear and she has surprised us in a good or a bad way. Unfortunately our generation is still getting used to the special needs population being a participating part of society. I believe it will get easier for families like ours eventually. I believe because we refuse to keep our special families in isolation, like past generations did, complete acceptance will someday happen. For the families who are challenging this change. For the people who accept, love and respect my daughter and all people, I too have a dream, much like a great man who knew segregation was wrong. 

Miscarriage

 I often feel his presence. I know it is not something everyone believes, but I do. Yesterday I had a strong day of feeling him close. When I woke in the middle of the night I knew "he" was their. I always felt like it was a boy, the baby I miscarried in the late fall of 1997. A picture I found yesterday of Mark, Beau and I together stirred much emotion about him. The picture was taken on Thanksgiving at our house in 1997.  Mark and I had planed to announce our second pregnancy to the family on Thanksgiving Day, instead it was a day of sadness and pushing through the pain. I had miscarried just days earlier, changing my joy to sorrow in an instant. I had not even told people I was pregnant yet, so to then tell them I had miscarried. In the picture Mark and I have smiles on our faces, but it was the beginning of months of sadness for me. I remember Mark trying to pull me out of my grief, but nothing really helped. I couldn't shake the loss and with the winter being tough for me anyway, the loss just made it worse. Last night I woke and he was with me, I could feel him, it's not something I can describe well, but I knew it was him. I still miss him all these years later. I still wonder what our family would have been like with him in it. I still think about my son Beau, having a brother and what that would have been like for him. I still picture a face, I never saw. Miscarriage is an unspoken grief that we are forced to move on from. Many don't get the pain of it or that it never leaves you completely. I didn't bury a baby, so to many it is unreal, but for me, he is here, near me, waiting...I still miss him all these years later. 

The Unknown Fears

Yesterday my 18 year old son, Beau asked me "How long is Teale expected to live?" He warned me before asking the question that it was a "deep question." I was not shocked though. Mark and I have had this discussion much. The fear of losing Teale has been part of my heart since long before she was born. I had miscarried before my pregnancy with Teale, so from the moment I found out I was pregnant again, fear and joy combined. We got the news of her condition in the second trimester of my pregnancy. Her stomach was open and she would need extensive surgery to close it after birth. The possibility of the pregnancy not making it to full term was presented to us. After her traumatic birth, where she didn't have a pulse for over seven minutes, fear crept in again. Then there was the surgery to get her through, infection was a huge concern. We didn't know how her system would respond to all the trauma. There was always the fear of losing her. Teale is strong and she fought for life and we brought her home after two months of recovery in the NICU. There was much to be thankful for, but the challenges were far from over. Diagnosis after diagnosis would be dumped on Teale, one by one over the course of many years. One of the scariest would be when her seizures started. As an eight month old infant, seizures would be confirmed.  We were on our tenth year Wedding Anniversary family trip to Cape Cod when we first saw the strange behavior. Teale's head would do a rhythmic movement over and over again and we knew a new challenge was starting. Soon after getting home from that trip we would get confirmation of Infantile Spasms and daily shots of ACTH would be ordered. Teale's seizures were practically constant and very disconcerting. Stopping them would be the first step, but the possibility of seizures always being part of her life was very high. We would win this round, the Infantile Spasms would be cured, not without many struggles, but cured. It would be Spring of 2003 that our fear would come back full force. A night we could have lost Teale had I not followed my gut and gotten out of bed to check on an unfamiliar noise. I had been cozy in bed with our new infant Gwenn, nursing her before going to sleep. Beau and Teale were both fast asleep, Mark next to me, reading in bed. We had new neighbors next door and their dogs, unfamiliar with the new home, were barking. In between the barking I heard something, but Mark couldn't hear it. I was being prodded to go check it out, even though I was so comfortable with Gwenn snuggled into me on one side, Mark on my other. The nagging finally got to me and I went to check on Teale. She was having a Grand Mal seizure, her first, so we had no emergency medications in the house to stop it. Screaming for Mark to come, Teale was a horrid shade of grey, vomit on her, she had aspirated it. Her bladder and bowels had given way, my baby girl was soaked in bodily fluids and the seizure was still very strong. We called 911 and Mark directed me to run to the neighbors house for support, we would both need to go to the hospital and someone would need to stay with Gwenn and Beau. The ambulance finally arrived and Teale continued to seize on the way to the hospital and as the doctors worked on her. We would call our paster, scared we would lose Teale that night. It was a night that changed me, fear of losing Teale has never left me since. She would make it through and miraculously we would bring her home alive and with no further brain damage. But Mark and I would never sleep as peacefully again. Her seizure had lasted over an hour and a half, the doctors would immediately diagnose her with Comprehensive Epilepsy and we would see a specialist. Brain surgery would be discussed, many medications would be tried. There would be many more scary nights with middle of the night seizures of great lengths. Teale's seizures are always nocturnal, there is something about her sleep cycle that turns her seizures on. Ambulances would rush us to the hospital several times over years before we would finally stabilize Teale on medications, stopping her seizures. Teale hasn't had a full Grand Mal in years now. You would think my fear would be gone, but it's there, it's always there. Mornings she sleeps in later than her usual, I think I missed a seizure in the night and I struggle to open her bedroom door. Nights she sleeps at her beloved special needs overnight camp, I worry I'll get a call that she didn't wake up in the morning. Nights she sleeps at respite, I hope that she is being carefully watched. Every night we put her to bed, I wonder if the seizures will come back? So when Beau asked me yesterday his very difficult question, I was honest. I just don't know, the fear never leaves me...

Worry

There are times in our lives that all we do is worry. We "keep our head down and plug through the crisis," as my friend recently said. But our minds spin and worry takes over. I've been in many crisis in my life. Not only with my daughter Teale, although those are the ones that have ripped my heart the most, but also with extended family and friends. I've seen siblings abuse drugs and alcohol, I've seen mental illness among family members, I've witnessed divorces and suicides, aging parents and young spouses of friends die. Life is not all peaches and cream, that I know well. I've walked next to friends and family in pain and I've tried to hold their hands and be their sounding boards. To me, this is an honor, to support a person you love through a crisis is what friendship is. I've been on the receiving end too, people I didn't even know understood and they carried my family through many times of great dispair. I've grown with these experiences, I've learned about love in a deeper way. I've learned about my God and how much I need that relationship, in the bad, but also in the good too. There are many worries in my life, they can engulf me, if I let them. Mark and I take life on as it hits us, a crisis may be a time to learn a new lesson or get stronger in our faith or bring someone new into our life who we need. I am somewhat idealistic. I believe in fate and that things happen for a reason. I believe we meet people and learn lessons we need to learn. I believe that Beau, Teale and Gwenn picked us because we needed them. Worry overcomes us all at times of crisis, but I work hard at letting it go and believing "it's all for a reason."

Destiny or Choice?

Do you ever wonder what you could have been, had life not gotten in your way?
Do you ever wonder where you might have been, had life not taken you where you are?
Do you ever wonder with who you would have been, had life not thrown you the people you have?
Is it fate or is in luck that makes our lives become what they are?
Do we choose our path or is it chosen?
Do we make our life or do we just live and it happens?
Can you change your destiny?
Would you, if you could?

Migraines

I've gotten them since the fourth grade. A year that struggle is all I remember. I had a teacher I feared, she was strict, a yeller who easily snapped and seemed to hate me. My family had fallen apart. My Mom hurt and I could see the pain and fear in her eyes as she began a new life, without my Father. My oldest sister graduated from college and on that same day my Dad got remarried to the woman he had left my Mom for.
Fourth grade was the year I look at in elementary school as the year I'd most like to forget. The migraines started and because my teacher seemed to dislike me, all I remember was her accusing me of faking my pain to try and get out of work. The pain was intense, the nausea would overcome me, I couldn't contain my tears and would often melt into a puddle. My Mom had suffered migraines, she knew it was real. She worried and tried to get me medical help. I missed much school and fell behind in the lessons, fearing the wrath of my teacher more. The stress of trying to catch up would just give me more migraines. It was a vicious cycle, I just couldn't win.
I often wish I could embrace that fourth grade me and tell her it was going to be ok. I wish I could tell her that one teacher's opinion, one person, should not be allowed to kill another person's spirit. I wish I could tell her that in the end, fourth grade was not that important. I mostly wish I could tell her she was a good person.
It was the year it all began, a lifetime ago, that still sticks out as a year I couldn't find peace or compassion in my fourth grade classroom. I struggled and I hurt, my life seemingly falling apart, but to this teacher I was just lazy. I was a problem she could fix with her strictness. I often wondered if she herself had not known love or compassion?  Was her unkindness because she had been treated the same? I remember the day I finally shared my sadness over my parents splitting, the finality of my Dad remarrying. I remember nothing but her icy stare and the accusations of me making excuses why I was so far behind in the work. She thought I was making excuses, but in truth I just needed understanding. I was a confused kid, who felt alone in her pain, who thought no one lived in my world of a family torn apart by divorce.
I wonder now if she knew how much she scared me, how deeply fearful of going to school I had become. The power she had over me still makes me pause. How did no one see that she was killing my spirit or did they? Did she just have others convinced I was just a bad egg and not a child struggling?
She changed me, all good and bad circumstances we live, change us. We take the lessons in and learn from them. We may not recognize those lessons at the time, we may stuff the understanding deep into our self conscious, but we change.
For me that year taught me more than I could possibly understand as a young, fourth grade girl. The way she made me feel, I would remember forever and I would treat children completely differently than she treated me. I would love and feel compassion because of her. I would look at children, knowing they were good. I would not jump to mistrust and doubt when a child's spirit was in my hands.
The migraines continue to this day and I still think of her when I get one. My heart still skips a little faster with with fear when I think of fourth grade.
I learned that the way we see people is only a small part of their depth. I learned there is always another side of the story. I learned to seek the truth and not jump to my own conclusions. I learned that children are good first and foremost and that they deserve our love, our understanding and our compassion.
I learned the saying "you will get more bees with honey than with vinegar" to be true, because in fifth grade I found a teacher who understood and that year my work greatly improved. 

Antipsychotic Medication, continued...

I got home and shared the news, then did some reading up on Hoshimoto's disease. The reason her behavior had been so off was because her thyroid was being attacked by her own boby. She was essentially running very high. Her system completely out of whack, her heart racing, making her constantly feeling anxious. It had been suggested by both doctors to get her on a beta blocker. The rages were so close together, so often on a day that she was home from school, we were barely catching our breath. Summers are fleeting in Upstate NY, you look forward to them all year and then in the blink of an eye they are gone. It was August and I had never before or since, hated Summer, but this August was horrid. Her school day was shorter in the Summer, so she was home longer hours after school before Mark got home from work. The weekdays were the roughest, I was exhausted and suffering more than people knew. I carried a strong outside appearance, but inside I was crumbling. At the time my Mother in law lived with us and needed much care too, I was fried trying to help my family through this crisis. As usual, I felt alone and forced to just plug through. My husband's family didn't step up and I was hurt by their lack of care. Didn't they see I was drowning? We started the increase of the beta blocker right away. The theory being that it would take away the horrific racing feeling my poor daughter was having. All I could liken it to was that feeling of literally wanting to climb out of your own skin, Teale was feeling that way constantly. It made my heart hurt to think about what she must feel inside. I've had a few "anxiety attacks" in my life, so I thought about those. I've never been diagnosed with anxiety, but if you just look at the unpredictability we live, I guess it would seem reasonable I would have at least an occasional attack! We increased her beta blocker, propranolol, that day. It is a mild blood pressure medication that we have used for her anxiety many times over her lifetime. We see mild results and therefore have kept it on board as a add in, in stressful times for Teale. It just takes the edge off of her anxiety enough to get her through a time or event she is anxious about. It is not a miracle drug. It's subtle, enough of a help that we notice, but Teale is so intense at times, I'm sure no one outside of Mark or I see the difference. Increasing it has risks, it could drop her blood pressure so much that she could physically fall. Considering Teale's CP, legal blindness, etc. it is risky to have her unsteady. There was not much relief on the higher consistent dose of propranolol, so the doctors suggested a higher dose, a longer acting propranolol. Weeks went by without much relief. The dropping started, her behavior was still awful. She was still biting her own arm so much it looked like hamburger. She had scab on top of scab, the bruised ranged in deepness and I was self conscience of her arm when out in public. People would stare at it, I worried about child protective services being called. I hated the judgement without understanding of the crisis we were suffering. I was bruised from head to toe myself, from the times I would need to try to physically restrain her in rages. She was strong, I was losing the ability to keep her safe in a rage. I remember thinking this was it, we were going to have to give up care of her. I was sad constantly, but trying to just survive the crisis, hoping it would soon be over. The Hoshimoto's diagnosis was somewhat promising, once her body got through the killing of her thyroid, we could add synthroid and begin to stabilize her again. The problem was no one really knew how long it would take her body to kill her thyroid and so there was no clear end in sight. Weeks went by and then Teale was off for her three weeks at home before school started again in the Fall. The rages were several times a day. I was calling or texting my husband at work, crying often and feeling just defeated. I sat in her psychiatrist office, worn from the stress. We had tried antipsychotic medications before. She never responded well and the side effects were worse than the relief. Dr Tom handed me a new prescription, saying go home, research it, talk to Mark and decide if you want to try it. I took it cautiously, medications are not the miracles I once hoped they would be. Side effects, years of "experimenting," drug trials that made life harder, it had all jaded me. I took the script, shoved it in my purse and thought to myself, "doubtful." Hugging Dr Tom goodbye, I lied and said I would consider giving it a try. As I drove away, I decided to go to our grocery store, who also housed our pharmacy. Something drove me to get the medication filled, even though I still didn't plan on trying it. I went home and soon, it happened, another huge rage. I looked at Mark and said, I can't keep living like this, I'm seriously losing it. Tears ran down my face and without even researching, I gave Teale the antipsychotic. To our surprise, the benefit was almost immediate. I called Dr Tom to let him know I had tried it and was going to continue it. Her eating increased drastically, as we expected it would, but her behavior was so much better, her doctors talked us into sticking with it. It is almost three years later. This medication hasn't been perfect, after all, Teale weighs more than I do and there are still rages, but the benefits of the antipsychotic have been drastic. Teale is the most stable she has ever been. The timing may have been coincidental, but between her finally being in a school setting where she is happy and her being on an antipsychotic, I hardly ever think about needing to give up care of my daughter anymore. We did recently go through a rough patch, but we took a chance and doubled her antipsychotic and she has evened out again. I said earlier I didn't believe in the miracle medication that would help Teale. That is no longer the truth. It isn't perfect, but thanks to her psychiatrist's persistence and our faith that Teale had the potential to be better, she had come a very long way...