Too tired to live, or just too sad to be free

I didn't think it was possible to be this tired and then I remember yes, it is possible to be this tired. My tears are just falling from exhaustion and yet, I can't fall asleep. Molly and Charlie are snoring in tandem...silly dogs won't give any me room to stretch. It's nights like these that make miss my Tyler the most...I could sit in his room and play scrabble and just listen to him breathe.To listen to his steady breathing was such a comfort, after all the early years and medical struggles. Those hard fought surgeries to give him a clearer breathing and as much functionality as we could were worth every bit of pain, to see his body twisted into a hairpin, heels touching the back of head, wracked in agonizing pain was horrific. I can recall the recovery nurses running to get me to hold him and comfort him after the surgery. There was such pain in those beautiful eyes, "Momma what have you done to me?" Oh, my dearest son, I want you to live...I want you to breathe, we had to do this to help you. Those nurses begged me to talk to him and let him know momma was near. I did..and with every surgery, I begged Ty's forgiveness for subjecting his body to such pain. His body was so broken. His early years were never a comfort, it was such a battle. I can remember when we first brought him home...on Christmas Eve. So tiny and so needy. He was barely 4 lbs. The monitor, the beeping, the strangeness of our home....I can remember sitting in that rocker can holding him to my chest for hours and hours on end. Everything startled him, everything made him cry.....his senses were constantly assaulted by light, by sound, by touch. He never stopped crying for hours and hours. I can remember Dr. Cordes giving me some drops to give Tyler just so I could get four hours of sleep. The crying never seemed to stop, 18 hours a day, never ending. WE rocked and rocked. I felt it was necessary to hold him close to my heart and let him hear my heartbeat, to try and comfort the constant sensory overload. Low lights, quiet, and momma's heart beat. I was so unprepared to be his mother and this blessed child changed my heart forever. He taught me so much and I long for his smile and laughter. He was so cruelly ripped from our lives and so suddenly gone. I still can't grasp the grief sometimes. There are those moments when memories consume you and the loss is all you can hold on to. There is no timetable on grief and loss. There are times when living is unbearable and the tears won't stop.

http://notyourmommaskitchen.blogspot.com/2013/07/pnk-beam-me-up-official-lyric-video.html

Mother's Day Musings

Mother's Day is a bittersweet holiday for me.  I have often felt my life only began when our first child was born and I became a mother.  Tyler arrived far too early and was severely handicapped from birth injury.  Learning to love and care for this precious exceptional child forced this perfectionist-driven and highly impatient person to open her heart to the gift of unconditional love. His life required numerous hospitalizations and hours upon hours of therapy. However, Tyler's compromised health and limited physical abilities never impaired his capacity to love.  His expressive eyes and winsome smile spoke volumes and conveyed his joy of being with his family.

This formerly impatient and often critical woman waited nine and a half years to hear her boy speak. God had granted me patience and had shown me the beauty and inherent grace in imperfections.  Tyler used an augmentative communication device or AAC, programmed for his needs, to pick out phrases and then "voice" them with a press of a button, mounted on his wheel chair head array.  When given a menu of 30 phrases to choose from, he chose "Mom, I love you" as his 'first' spoken words. They were some of the sweetest words I've ever heard.  How I long to hear him again.  I miss him so much.

Of course, by finally giving Tyler a voice, it was another window into the fascinating workings of his mind.  We always appreciated his smile and infectious laugh, but now, he had a voice and could joke.  I'll never forget one time, when Tyler kept saying "Mom" over and over again. It was rather like a scene from Family Guy, with the notable exception that he did not stop at the 45 second mark, but kept up the "Mom" entreaty for 45 minutes.  I kept asking him, "did he need a drink?" Big Tyler grin.  "Do you want out of the wheelchair?" Big Tyler grin.  "Are you hungry?"  Bigger Tyler grin. "Mom. Mom. Mom."  I was getting a little weary of the "moms" by now and told Tyler, "I'm going to take a nap on the  couch and when you can tell me what you want, I'll help you, but not until then!"  I stomped over to the couch and turned my back to him.   As I faced the wall, feeling a bit guilty, I could hear Tyler clicking his way though his dictionary and picking out words slowly but very deliberately.  After ten minutes of scanning and clicking, I hear....."Mom, BIG BUTT" and hysterical laughter.  Yes, Tyler, my love, momma has a big butt.  And my dearest angel, I still do.