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Sunday, October 26, 2014

The Ups & Downs

We all have ups and downs in life. Times we are on top of the world and times we struggle to understand the point. I'm often somewhere closer to the struggling to understand the point, but I try to put out a more positive outlook. Often my strategy is to look for the bright side in a tough situation. An example, yesterday I posted the following on my FaceBook page.

My sincere thanks to the many people, including Wegmans (our local grocery store) security, who offered Mark help in Wegs parking lot a bit ago. Teale in a rage, by yourself, in public, is beyond tough. But, the upside, the world really is getting more compassionate toward these situations. People are recognizing "a child with special needs," as opposed to thinking it's the parent's fault. Mark didn't feel like anyone was judging him, only wishing they could help. The kind offers made Mark feel less alone. A huge difference from how we were treated when Teale was little & raged in public!   

The truth is I do feel grateful for the help offered and the fact we don't go through these episodes as often, but the "why does my daughter suffer so much haunts me." It's not pretty and it wrecks me every single time it happens. It can ruin a day or a weekend. I can recover quickly or I can hurt inside for many hours or even days after a rage. The bruises on the outside pale, both literally over time and they are not nearly as hurtful as the pain inside my head. I suffer PTSD from rages. My adrenaline gets high in the fight or flight moment of a rage and then I crash. I am sincerely mentally burnt out and scared of what will happen next. But I have found looking for the good in these situations helps me. Like the fact that if Teale throws stuff or breaks something in a rage now, she will help clean it up, after she calms. She knows my exceptions and has come out of rages asking how she can help. This may not seem like a huge gain to an average person, but it is in my life. We all have ups and downs, we all deal with stress and disappointment in life differently. I tend to write and share my life with others, whether it is here or on my FaceBook page, sharing through stories helps me to get through. So if you are a part of my life here, on FaceBook or both, writing is cathartic for me and I appreciate your being a part of the life of my family. 

Thursday, October 16, 2014

My Miracle

She was born to me on a cold December day in 1998. A surprise, coming earlier than we expected, but our knowing this was always a possibility. We knew she had a serious medical condition, that could cause premature birth, but we did not know the gravity of what was about to happen. We didn't know that what we expected to be her biggest issue, would soon turn into one of the least important concerns. My husband held my hand tightly as she was pulled from me via cesarean section. There was silence in the room, not a cry from my baby, not an announcement of "It's a girl," no excitement or even hushed whispers. It was the most devastating silence I have ever experienced. I broke the silence, asking my husband "Is it alive?" His response even more troubling, "I'm not sure." I then conjured up the courage to ask "Can someone tell me what I had, so I can know who I am praying for?" "A girl," the kind, soft spoken doctor said, "do you have a name?" "Teale Tatiana." I announced proudly and began praying for her in my head. That is how Teale’s life began. She was unresponsive when she was taken from my body. It was a shock that no one in the room expected, a baby who wasn't breathing. There was specialized nursing in the delivery room, but that was because the hospital staff "just" expected her to have a condition called gastroschisis. Her stomach had not closed in utero and she would need surgery to put her intestine and colon back into her tiny body. I knew it was touch and go in that room because the silence was so unnerving, but later we would learn there had been no pulse for over seven minutes. No pulse, nothing, she was gone by all medical definitions and her APGAR scores were proof, 0 at birth, 0 at five minutes, but they didn't give up, so at ten minutes she got a 3. The nurses worked on her and then told me they needed to get her to the NICU. Teale would still need to undergo the surgery to correct her gastroschisis as soon as possible, but first they needed her to be stabilized. They whisked her off, with me barely able to catch a glance of my beautiful baby. Mark, my husband of almost 10 years, was by my side, as I recall, both of us silent. What could we say to each other in these moments of uncertainty. We had no control over the situation and I'm sure all we felt was desperation and grief. Our baby was in great distress and we had no idea how this was all going to play out. This was just the beginning of a life we never saw coming. Teale would remain in the NICU for two months. In that time, she would be diagnosed with severe brain damage, cerebral palsy, seizures, we would be told she was deaf and may never walk or talk. But, one doctor's advice stood out above all the negatives that were thrown at us ~"Give her all the love and experiences possible." and that is how our miracle began.