I was almost 18 weeks along when I found out just how special you would be. Finding out you have Down syndrome and a heart defect that would require surgery scared me in a way I've never felt before. There was never any question in my mind about what I would do.. you're my son and I knew we would be ok. Meeting all of our friends from the Down Syndrome Association and having their support assured me of that. We met Shawna when you started your physical therapy and I saw how hard you were trying, even though I know you got frustrated. But, you really were trying so hard to do things that other kids do so easily. Then, the spasms started the end of October and changed everything. I hated having to make you go through the EEGs, especially when we had someone other than Maria. The part I hated the most was that you stopped smiling. You didn't stop "eyeballing" me though. You watched me everywhere I went. I know I loved looking at you... watching football, sucking your thumb, kicking cat in the hat... I loved watching you do anything. I was so terrified at Christmas knowing your heart surgery was five days away. All I could think about was if that was going to be our only Christmas. I just couldn't believe life could be that cruel to us. When you did so well, I really thought we were out of the woods. Your spasms seemed to be slowing down, but I was still worried about the possibility of permanent brain damage from the epilepsy. I kept waiting for you to start improving from the surgery. The nurse said you were doing fine, but I just didn't think you were getting better. I should have listened to myself. Why didn't I just trust myself????????? Oh baby, Mommy's so sorry. Driving back to the hospital that Friday night, in the snow, I never imagined...... never imagined 4 days later, I would stand screaming while nurses did chest compressions on you; sign a paper to put you on life support; sit for the next 25 days looking at monitors, tubes full of blood coming out of your neck, watch your blood pressure go up when I would walk in the room and start talking to you letting me know that you knew I was there; stand by your bed every night reading books instead of being at home holding you while I read; finally feel two little teeth coming in on the bottom when I was doing your mouth care... Sit and listen to the words that it was time to let you go. It felt like I was in a tunnel and it just didn't make sense. This wasn't supposed to happen. I crawled in bed next to you and curled up around you. Your song played, Only You Can Love Me This Way, Mommy sang, and they shut off the machine. I took my hand off your chest for one second to turn the volume down, and when I put my hand back on your chest... I just screamed No and I can still hear myself screaming. I held you and begged you not to leave me.. Mommy needs you. Mommy does need you and I would give up everything and everyone in this world to have you back. Baby Mommy wants you back. I went in the next room while they took everything off of you and then I held you and rocked you and sang our songs. I gave you a bath and changed your panties and washed your hair. I put the new outfit on you that I had bought that week to take you home in. Mommy promised you I was taking you home and I did. I put you in your crib every night and every day, I place you next to Moo Cow. It's almost 2 years and it still doesn't seem real. I'll never understand how life could be so cruel to take you away from me. You're such a brave strong beautiful little boy and Mommy is so proud of you. You fought so hard to stay here, Mommy knows you did. Oh God I can't stand this. Mommy misses you more every day, my little Cuddle Bug. Mommy still holds you tight, always. You're the best thing I ever did and always will be.