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Wednesday, April 23, 2014

Holidays Aren't Perfect

It wasn't perfect, it wasn't the Easter I envisioned as a young Mom. Back then I would picture the idilic Easter I would throw for my family. In my dreams, the kids would wake and happily look for their baskets and then easily get dressed in their new Easter clothes. Off to church we would go as a happy family and come home spiritually lifted. It would be a beautiful Spring day, extended family would arrive and we would share a lovely meal. Mark and I would hide Easter eggs and the kids would have fun searching for them.
Our day wasn't quite like that, but it was good, there were memories made and it was real. Holidays are like life, just shortened into one day and the expectations for that one day are high. We are supposed to make it the perfect day, but the reality is, holidays are never flawless. I think we just forget the flaws as we age. We remember the good parts of our childhood and holidays done by our own parents seem better in our memories. Life was easier back when I was young. Times were tough, my Mom being a divorced parent, my expectations were pretty simple. I didn't expect a big Easter gift, a basket of chocolate and a few fun things was plenty. I remember the years a neighbor somehow arranged Easter eggs being dropped into our yards by a single engine plane flying overhead. I remember chocolate bunnies that took forever to finish eating. There were hams that tasted perfect while we sat at the dining room table with Grandparents who told stories of their idyllic childhoods.
This year was special though, mostly because we hosted both Mark and my family for the first time in many years. Holidays are not easy with Teale, so over the years we have tried to simplify them, knocking down the expectations for both her and ourselves. Her expectations were so high we just couldn't meet them. We would have meltdowns on holidays that went into other meltdowns. The whole day often felt like one big Teale rage, with little breaks of happiness. With public places closed, there was often no relief. Getting Teale out of the house used to be our only weapon to calm her. A visit to a favorite place would help her, but those favorite places, like malls, museums, the YMCA, a grocery store, etc. would close on holidays so staff could be home with their own families. This made our day more difficult. I remember one Christmas Mark spent at the stereotypical, bowling ally and Chinese restaurant. Those are two places known to be open on Christmas and Teale was happy there, but miserable at home. Beau, Gwenn and I tried to enjoy the peace while they were out, but my heart ached to be a family of five for that one day. I remember wishing we could just keep her happy at home, playing boardgames by a fire and sipping eggnog while Christmas carols played over the stereo. I was jealous of typical families, I've had the toughest time of any of us letting the dreams of perfect holidays go. I have been sad on many holidays because my dreams of what I thought my family would be, has not been.
So this year when I presented the idea to Mark of a big gathering at our house, I remember the feeling of excitement filling me. I thought out the menu, who would come, what we would do and then I prayed it would go smoothly.
As I said it wasn't perfect. Teale was upset a few times. We had decided that trying to go to church was just too much, for many reasons. A loss I struggle with. We weren't dressed in fancy new Easter clothes. There were many people who were unable to come. The potatoes were forgotten in the oven, until after everyone had basically finished their meal. The flowers never got picked and the candles never got lit to make the table beautiful. There were probably many glitches I was unaware of, but overall, everyone seemed to enjoy the day.
Holidays aren't perfect, but in our memories, we will probably only remember the happy times and the love that was shared. 

Saturday, April 12, 2014

Acceptance

We didn't choose this path, Mark and I aren't saints who took on a special needs child because she was alone in an orphanage in a far off place in the world. I know families like that, several actually, and I admire their love immensely. Those parents purposely picked their children and opened their hearts and their homes, knowing there would be challenges beyond the normal ones we face in parenting. Mark and I are not one of those families. Truth is, if given the choice, I'm not sure I would be here, in this family. Some of you may be cringing at my honesty in that statement, but I am human and life with Teale has been tough! Teale happened to us by chance and here we are. We aren't perfect, we have made many mistakes, we have snapped in times of turmoil. We have even wondered if we can keep going? In times of Teale's extreme behavior/mood cycles doctors have presented the possibility of giving Teale up to a group home setting. There have been times I have wondered if they are right? Those thoughts hurt like nothing else I have experienced. Giving up care of your child is never part of your dream when you decide to have a baby in a loving marriage. No one thinks this can happen to them, no one plans to have a child who is so violent and dangerous to their other children and themselves, but it happens. It has been a long time since the days that the possibility of having to give up care of Teale pervaded my thoughts constantly. I only wonder occasionally now if we will be able to keep this up. She is bigger than me and I am often at risk when things don't go her way. She can snap and attack, I live life on my guard, always. She's much more stable these days though, the explosions are fewer and farther apart. We're not living in constant fear and exhaustion as we have in past cycles that seemed endless and hopeless. The days of her constant explosions have mostly passed and in many ways we aren't that much different from other families. But we are different, we will never be the typical family who worries about which college Teale will go to, who she will meet, if she will marry and move far away? Our future for Teale is filled with the hope of happiness and independence, but it is not the same dream I have for our other children. Without sounding callous, it is tough to say this, but my dreams are more simple when it comes to Teale. At this time, Mark and I would prefer she stay under our roof throughout much of her life. We have a plan of having her live here with us, in our care, but with support and possibly even a housemate for her. Plans change though and if Teale has taught me anything, it is to not count on anything. When Teale was born we knew our marriage and our family was suddenly completely different from most others we knew. It was a slow process into this life we have now. I remember the beginning of the journey and the thoughts and dreams I had. I remember thinking we could overcome what the doctors were telling us. I remember thinking they were wrong and with much work Teale would use her right arm, we would win and show them they were wrong. She doesn't use her right arm or hand, we never could get her brain to connect those "dots." We "won" other battles though and for those we celebrate what Teale has and is. It happens slowly though, the changes of acceptance. There was a time I never would have believed she would graduate from any high school but the same one I graduated from. I pictured her walking across that stage, cheers filling the room, because against all odds, Teale had done it. We live in the home I grew up in, Beau graduated from the same high school I did. Mark grew up in the same town, graduating from the other high school and living just miles from me as a kid. We are entrenched in this community. I believed in Teale's being accepted here, embraced and loved. When we first started the journey of public education, I was sure our district could teach Teale. I wanted her in our community, after all she was already such a huge part of it and loved by so many. Even as a five year old, heading into kindergarten, I was sure she was teachable, I was sure she would grow with her peers and walk across that graduation stage with them. I knew she was special, but I had not accepted lower expectations for her. That came with time for me, maybe it comes with time for every parent? Our dreams change and our journey becomes something we did not expect. I was naive in the beginning, I believed love and hard work could cure all the birth injuries Teale sustained. I believed Mark and my love was more powerful than anything the doctors diagnosed. I did not choose this journey. I probably would not have. The pain is great and the loss of dreams of a normalcy for my daughter has been at times more than my heart could bare. She won't ever walk across the stage at the high school I graduated from. The kids who knew her back in her elementary days at public school may not even think about her anymore. They may not remember the lessons she taught them by just living her very challenging life. The dreams for Teale are not less, they are just different than they are for Beau and Gwenn. My heart hasn't hardened with this challenge, my heart has grown and accepted the life we live. I no longer think I can change Teale's destiny completely, but I do know Teale has changed mine. 

Monday, April 7, 2014

Six Weeks & Counting

I've never been good at consistent exercise. I have gone in short and long spurts of getting regular exercise, but never stay with it forever. Taking regular time for me has always been a problem in my life. Sure, I get out with girlfriends and I take time with Mark or doing something I enjoy, like blogging or gardening, but exercise seems to be a tough one for me to stick with. At 46 years old I am back to a daily plan. The week of February break with Teale home was rough. She was in a bad cycle, back to raging often, basically daily. My way of dealing with the stress of that time was not good, I know I ate a lot of sugar foods. I was looking for that quick high, that happy boost after you ingest sugar. I knew what I was doing, but I was totally not in a good place to stop it. Instead of detoxing from sugar the day the kids went back to school I decided to up my activity level. I had gotten a Fitbit from a friend who got it at a huge discount. The first month or so, I just wore it, tracking my normal activity. What I found wasn't good, without my mother in law living here, I was getting far less activity or steps in per day. I had realized my steps went down drastically when she moved out in June because I no longer had to go downstairs nearly as often. When my MIL lived with us, I was running down to check on her or take her food, etc. several times a day. The set up of our house is different from most. Our bedrooms and main living space, including the main kitchen, are on the upstairs level. The downstairs has a similar set up and that was where my MIL was living. But without a reason to go downstairs, like doing laundry or getting something out of the second kitchen, I barely ever leave this level. Staying on one level had drastically cut my activity. When my MIL lived here I bet I was up and down the stairs at least 40 or 50 times a day. I truly wish I had had a Fitbit then! Anyway, in my head, I made a commitment to myself to start getting in 15000 steps a day on February 24, 2014. Today marks 6 weeks of that commitment. It hasn't been perfect, I've missed the goal somedays, but overall I have stuck to it and done well. My success has been a team effort with my husband, who has supported me in many ways. His acceptance of my not getting stuff done around the house has been a big factor. Taking the time for me and ignoring some of the less pressing things in our life has been a learning process. Walking away from unfinished chores to get on the treadmill, knowing if I don't, it will be tough to meet my goal by the end of the day has been a challenge. I've learned how much time it takes for me to get in the 15000 steps and I try to get in a third to a half early in the day. I've even started exceeding the 15000, getting in 18000 or more fairly regularly. The changes to my body are many and they are few. I feel mentally better, I believe my body is tightening, I'm building muscle and my stamina is much better. BUT I haven't seen a big drop in weight, so that has been frustrating. The goal I set did not include changing my eating habits because honestly, I knew that would follow. I knew seeing the effort I was putting in to get in the 15000 steps would make me want to make healthier choices. I'm an excellent "dieter" once I set my mind to it, I lose weight, but I end up gaining it back, I'm a classic yoyo dieter. This time, I have changed my eating habits, but not drastically. I decided I would exercise and just go with how I was feeling, changing things slowly because I am putting in much effort to my exercise. I know the food changes are more "important" to losing weight and my goals are both improving my fitness and weight loss. I guess I had to realize that upping my activity would not give me the drastic changes I was hoping they would. Now I have to accept responsibility and also make much better food choices. I am sure in another six weeks I will see the results I hope for, so long as I stick to the plan. 

Sunday, April 6, 2014

The Hug

I took a chance and leaned in to hug her goodbye. She was sitting on my bed, waiting for her Daddy to finish helping her get dressed so she could enjoy her favorite Saturday activity. Every Saturday Mark and Teale go grocery shopping. It's their thing and they both love the time together. Teale has gotten so obsessive about it, she seems to be waking many times on Friday night and earlier and earlier in the morning to go with her Daddy-O! Teale likes routine, she likes consistency and when she is running the show. The grocery shopping didn't used to be such an obsession, but it's been a long winter in Upstate Western New York and I believe Teale has clung to this activity with her Dad more so because of the brutal winter. As she sat on my bed, I know I debated hugging her much before I leaned in. It's funny how I over think almost every move I take when it comes to Teale. Even a simple hug goodbye causes me much angst. Should I or will I just set her off? Is it worth the chance? She had shown signs of agitation all morning, the last thing I want to do is push her over the edge and leave her for Mark to deal with. But, I'm her Mom, I yearn to hug her, to show her my love, so I risk it and hold her, kissing her on the forehead and expecting to be pushed away, as is the usual. Surprisingly, she leans into me, lets me hug her and then says in her innocent, concerned voice, "You come back?" I pull away, feeling like I just accomplished something remarkable. Teale had not pushed me away and the release of love between us relaxed my body much. I look at my 15 year old daughter who has only let me hug her like that a few times that I can remember. How have the years gone by so quickly, I think, it's a common thought of parents, but a sincere one. Teale has been sensory defensive her whole life. She doesn't accept warm touches from anyone well. She pushes us away when we try to comfort her, but we've learned ways to get past it. We squash hug her, Mark and I will press her between us tightly, holding her, somewhat trapped in our embrace. Those bear hugs she seems to get relief from, but still it is not often we can get them in. I've seen a change over the years she's been at private school though. The school she is at now is a very "huggy" school. Many of the special needs kids there are sensory seekers, wanting physical touch more than most. Their filters don't sort out the "appropriate" times to hug someone and at this school, touching in an encouraging, loving way is common. In public school it is discouraged, but not at Holy Childhood. I always felt this sort of environment was the answer for Teale. When she was very young I yearned for a way to break her sensory defensiveness with pushing the limits often. I was sure if I could get her on a therapy program where she was hugged and touched in a loving way often, she would eventually be broken of the defensiveness. I believe in a natural way, that has happened at Holy Childhood. The love of a private school, one that is not constricted by the societal issues around physical encouragement, has given Mark and I a child who we can occasionally catch off guard and hug. That gift may be one of the most priceless ones our family has received. So as I pulled away from our embrace, I felt thankful for a moment I won't soon forget and I answered her worrisome question, "Yes Teale, I'll come back, I always do...."