Which came first?

I am not sure in all of you know but before I was the mother of a child with special needs I was a teacher of children with special needs. Before that I was a caregiver to adults with special needs. After that I became a friend to adults with special needs. Before that I was a caregiver to children with special needs. I was only 14 years young when I started babysitting for a family with a child with special needs. Quickly through word of mouth I became "THE special needs caregiver in my community." I tried to divide my time and worked many hours. Steve my now husband would come with me and I would change catheter bags, work G-Tube feeds, I knew all the names of the special equipment, and knew all the greatest doctors as I accompanied some families to appointments. I soon became familiar with IEP and MFE's and ABA. I trained to be an ABA therapist and made great money to help me get through my time at Kent State (where I triple majored in Multiple, Developmental and Orthopedic Disabilities K -12). I had the best job while at Kent State I did personal care for adults with disabilities so I got to hang out with amazing individuals and get paid! I developed some amazing friendships. I met the most amazing people! It was my last year at Kent when I became all too familiar with death among the special needs population. One day I was working for Michelle who is still a great friend and one of the strongest most determined people I have ever met when the reality of living with a disability took a completely different turn. It was late and I was scheduled to put Michelle to bed that night and I remember Steve was on his way to pick me up because he never wanted me to walk alone on campus at night. A friend of ours who lived down the hall from Michelle who I had come to know well myself Kimmy was injured when her attendant was lifting her into bed. She simply pumped her leg on her bed. Her attendant was very frantic and Michelle and I stepped in to help. We were having a hard time getting a hold of her family who were away from home and we were waiting forever for the ambulance to arrive. Apparently the ambulance had trouble and broke down I remember calling 911 back and arguing about how long they were taking to get there! Steve arrived to get me and Kimmy started throwing up most likely from the pain, her leg had swollen pretty bad. It was a simple bump but Kimmy was already very frail. Soon the ambulance showed up and her and her attendant were off to the hospital by that time we were making jokes trying to calm her but none of us knew it would be the last time we would see her. Kimmy ended up leaving the hospital and going back to her parents house to heal. However, she never made it back to Kent (where she was about to graduate after years of hard work) she had passed away in her sleep. Her funeral was one of the saddest things I ever experienced I will never be able to hear the song they played, "I will remember you" by Sarah McLachian and not cry. I helped organize a tree planting ceremony that year to honor her. We planted a tree outside of Prentice Hall in her honor. It affected everyone who knew her in a large way and it was that day I realized how death too soon is a huge reality when someone lives with a disability. The years went on and through my caregiving of children and adults with disabilities and now having my own child I have witnessed God take many angels from us too soon. I will forever be changed when I hear of another loss. When I complain about all of my doctors appointments and therapies I think of the children who can't go anymore and the Moms who most feel so alone. I once had a friend ask me if I ever "think of what life would be like if Luke passed away." I was of course shocked at the question but I try not to get mad when people ask me things that offend me. I think it must be hard for people to be "friends" with me. I don't want my friends to be afraid to ask me anything. When my friend asked me I was honest although I didn't want to admit I had had those feelings. But of course I have thought about how different life would be like without Luke. I try not to let my mind go there. But it is a reality every night when I put him to bed that he could seize and not wake up. Clarabelle has made me rest a little easier but what if she misses one and what if he seizes and noone is there for him. Some days with my heart beating out of my chest I fly down stairs in the morning to check on him to see if he is still breathing, especially when he sleeps later than normal. I wish things wouldn't have to be like this but they are. There was one day in particular when Luke seized the longest he had ever seized for- 40 minutes. We happened to be at Steve's Grandmothers calling hours when he started. We were pretty far from the hospital and the drugs the paramedics were giving him were not helping him he had a fever which makes his seizures much worse. That particular day I believe I feared "Death" the most- I kept thinking Gramma Kish was coming down from Heaven and taking him with her. I can't even explain how terrifying it was and how joyous it was after to see him wake up and suck his fingers like he does after it is all over. Sorry to be so depressing on the blog tonight hope I didn't make you all cry! But I will say this to all the moms out there with special needs children or not be grateful for everyday that you have with your children they are truly a gift. The truth of the matter is no one knows what God has planned for us so we must live each day to the fullest. My blog tonight was inspired after hearing of a sweet little boy fighting CF named Connor! I got to visit his moms blog and was moved to tears to see how incredibly strong she is. Which doesn't surprise me I have met some incredibly amazing moms to some amazing kids! I don't know what comes first their strength as a person or their child. People say to me all the time God must have known he was going to give you Luke so he prepared you. Then others say God knew you had a gift and strength so he gave you Luke. I know in my heart that Luke has made me stronger and together we are ready for whatever God has planned for us! Please I am asking all of you tonight to pray for sweet Connor and his family- you can follow Connors moms blog at http://www.notsobrightandshiny.blogspot.com/