Bedtime

I walked into our bedroom this morning and almost walked right into and flipped over this - http://www.amazon.com/Intex-Pillow-Airbed-Built-Electric/dp/B000HBILB2/ref=sr_1_1?ie=UTF8&s=sporting-goods&qid=1266947062&sr=8-1 .

When Evan was born we were handed a cardiologist. We have since switched cardios. This first set of cardios scared me to death. I feel like if we had our cardiologist we have now things would have been much different. I feel he would have reassured me and set me straight on some of my fears. I knew nothing about hearts and loved my baby so much. I was so afraid of TET spells and had anxiety attacks when he wasn't near me. I took an extended leave from work and kept him in my arms day and night. I cradled him in my arms at night and woke up checking his nailbeds and lips - listened to his heart - checked his breathing - all through the night. I was exhausted. We had such big thoughts of how things would go with our first baby. A bassinet in our room and a crib in another room. Of course after a few weeks our baby would be sleeping through the night in his own room. Well... here we are. Our *baby* is 6 and he is still in our room. Honestly, it is as much my fault as it is anyone's. We transitioned to his room a few times. Then he would have a heart cath or a surgery and would be scared and cry. I would find myself being afraid and having panic attacks again. It was so much better to bring him with us and wake up to look over and see him sleeping with pink lips. Evan has always wanted us to be right there. I'm sure this is because I/we always were. After his most recent surgery he seems to need that much more. We even went to counseling recently. The counselor (who is an expert on counseling kids with serious health conditions) told us if we can give him this comfort and reassurance that we are and aren't pushing him than he will do it on his own terms. Evan is now 65lbs. and 47 inches tall. But he is still my baby and I will always do what I think is best for him. Always. No matter what. Another heart Mom recently said it best... "We are our kids advocate. This is not a job for wimps. I'm afraid I've disarmed people in the process but I will ALWAYS let you know what I think my kid needs and deserves regardless if i pisses you off or not. Parents of special needs kids are so often misunderstood. People see us as difficult. Well, maybe we are, but at the end of the day we just want our kids to have the same success in this world and same opportunities as everyone else without feeling like the oddball. It's simple, right? Be kind to us, our days are not easy. Be understanding, have patience and accommodate because someday, it may be you and then you'll wish you would have." Thanks Kelly... well said.