A life less lived

Both kiddies home with fevers today. No sleep last night because Autumn was sick. Today Aiden got sick as well. They are taking turns waking and calling for Mom. No rest for the weary.

Our friday therapy session was cancelled. The Special Educator asked if we could reschedule because she was going away for the holiday weekend. I feel like I won  a trip to Disney. :-)

Very happy about our cardio visit.The visit took four hours, it was pouring out, there was construction and chaos at the hospital and it took us one and a half hours to get home in the monsoon but I am still thrilled. Aiden's report was great. Doing as well as to be expected. He cried for almost forty five minutes but shockingly did not cry during the echo. There was a new echo tech this time. She was gentle and calm. He responded so well to her and laid in my lap watching einstein videos. I was so happy I could burst. During the doctor consult he started to cry again but that went relatively fast. Don't have to go back for another six months.

One year ago, April 18th to be exact we were in a hospital in New York. Our baby only seven months old at the time was in the operating room having open heart surgery to repair the pulmonary stenosis and valve issues. The cath they tried two days earlier was unsuccessful. It was a total nightmare, out of body experience. The very next day while our son was still sedated and in critical condition we got a call bedside to inform us he has Williams Syndrome. We spent twelve days in the hospital and finally was able to go home. Home to a new life with a child that has a rare genetic condition. It's been a tough and rewarding year. Challenging my strength and will as a mother and a woman. We go back to the hospital tomorrow for our one year follow up and echo. I dread going back but I am hopeful that everything will be o.k.

Reflections of a good day. Had some alone time with Aiden today. Dad took Autumn to Chez Chuckie Cheese's. We popped bubbles outside on the deck and then I gave him a razzberry under his neck that started a ten minute giggle fest. With him pointing to his neck and squeeling when I got close enough to do it again. How cute.

Glad to have a "family" of WS parents that understand what it is like to have therapists parading through your home everyday. They understand how as a parent your heart stops when the echo machine is fired during the cardio visit. What it feels like to have to inform your family and friends that your child has a rare genetic disorder. How it can test even the best marriage and add another layer of guilt to parenting the sibling of a special needs kid. How we have to fly to Kentucky or Nevada with our kids to get the best medical care! 

I know it will happen one day. One day I will forget how we waited and watched everyday for those few precious steps. How we applauded when he said A word. I can't wait for the day he says Mom and means me or runs up to Dad as he comes home from work. I watch all the babies around me ( friends, neighbors, families at the preschool and library) growing, walking, talking. I try not to let it bother me. It's hard when the kids half his age are walking and dancing while he sits in his stoller.  I know it will happen. I have been mentally preparing for the next cardio visit. It's usually a whole day at the hospital. He cries the whole time, the echo tech gets inpatient with us and doesn't help the situation. Not to mention the fear that they might find another problem. It has been one year since his open heart surgery and I still feel shelled shocked! To end on a positive note his kisses make everything o.k. My girlie was super great today. We enjoyed the warm weather and made it through the day without crying or whining.