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Thursday, March 6, 2014

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...

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