However, there are days when it is nice to talk to someone who has "been there, done that". It is reassuring to talk to someone who has dealt with the battles with insurance to get bills paid, dealing with hospitals who lose all kinds of paperwork, dealing with all the new medical language you are now fluent in, and dealing with the day to day struggles. I followed one blog prior to Hailey's surgery, Life as We Know It, whose beautiful little girl Kennedy is a week older than Hailey and who ironically had open heart surgery a week prior to Hailey's. Her blog brought great comfort to me as we were in those final days of preparation for Hailey's surgery. I've met people who's little ones are the same age as Hailey which is great because we are going through the same stuff at the same time. I've met people who have older children which is great because they have already been through the struggles that we are going through. I have met people who's little ones are younger than Hailey. Some of them have commented that Hailey gives them encouragement and our life shows them how "normal" their lives will be.
It is hard to explain the feelings that you go through receiving a diagnosis of Down syndrome. The disappointment, the sadness, the perception of what "you think" DS is...then the evolution of those emotions as you go through acceptance and you come up with a new and revised future for your child. You finally see what life with DS is really like. This new community understands that.
I think Hailey's DS diagnosis was front and center for the first 3 weeks of her life while she was in the NICU. It was then put on the back burner as we learned of her heart defect (VSD and multiple ASDs). This diagnosis was life-threatening. Finding out your child will need open heart surgery and waiting and watching for heart failure are both surreal. The anticipation of the surgery is stressful and long. You read the statistics and they are very much in your favor but you are still afraid that you will be in the less than 1%. Everyone who had been through it said, "the waiting is the worst". I should have trusted that and believed that. The black cloud lifted when the surgeon came out to discuss the surgery. You walk around in a fog for the next few days and few weeks. Did my child really just have open heart surgery? Did we all really survive something that only a few months ago thought we were too weak to think about? Will the words "my child had open heart surgery" ever leave my mouth and not take my breath away? Will I ever be able to take Hailey to the cardiologist without being nervous and scared? This new community understands this too.
I've been fortunate to meet some of these fabulous people locally and some only via internet. Regardless of where we met or how we communicate, I am very thankful for them...for their support, for their understanding and for their friendship. I look forward to talking to them through the years as we show the world how fabulous our children with Down syndrome are and what they can accomplish.
We had a beautiful fall day! Hailey enjoyed being outside playing (and eating) some leaves while her brothers played with friends and rode their bikes.
|Shhh...I don't think mom is looking. I'll just try this one.|
|Yum....these really are tasty mom!|
|Will you please stop taking pictures, mom?|
|Hmm..this isn't the right catalog for me to start my Christmas shopping? Do you have a Toys R Us Toy catalog anywhere?|