We are back. Gosh, I really enjoy writing this blog but thus far in 2013 Time has not been my friend. However, who needs Time as a friend when I have so many other wonderfully supportive friends (unlike Time).
When we first received JD’s diagnosis I read many, many, many blogs from families all over with all sorts of diagnosis. While each family, child, situation was different there was a similar thread which ran through most of the stories . . . it is lonely to be a mom of a child with special needs. Hmmmm, “why?” I wondered.
Do people pull away once they hear the words “special needs?” Are they uncomfortable around you? Do your friends and family stop talking to you because they don’t think you can handle hearing about their children? Do people judge you for being happy with what the world and society may deem an “imperfect child?” Why do moms feel so alone once the words special needs come into their lives? These were questions which weighed heavily on me everyday . . . that is until we sent out our announcement email.
There were a total of 43 days between the time we first heard the word “abnormality” and when we introduced JD’s syndrome to our world. During those 43 days only 7 people knew the Gawel family path had taken an unexpected turn.
During that time we attended birthday parties, family gatherings, the holidays, even my beautiful grandmother’s funeral with the full family in attendance without anyone knowing the difference. Questions were asked “are you excited” “do you think the baby is a boy or a girl” “how are you feeling” “is Connor excited to be a big brother?” With ease we answered each question with a smile but our smile lacked a sparkle (no one noticed but we did). Would these willing participates in JD’s life still be around once we told them JD was missing his full set of chromosomes? Would the tight hugs get a little softer and less frequent once JD’s future was revealed? According to many of the blogs and stories I had read the answer would be “yes.”
The day came to send out the email announcing James Douglas to our friends and family. We had waited long enough. I was ridiculously nervous. Not only because I was worried what people would think but once we told people Wolf-Hirschhorn would became real.
It was a Sunday night, Nate was in bed and I read the email and the first blog post over and over and over again until the words melted together. I waited to hit the send button until I could no longer keep my eyes open. After I finally hit the button I sat on the sofa waiting to feel relief or scared or nerves or something . . . then the text message on my phone dinged. While the EST and CST were snuggled in their beds the PST were doing their last checks of the Internet before heading off to bed. Darn – forgot about the west coast feed. Yet, within two minutes of sending that late night email on January 28, 2012 I received my first words of encouragement from my fabulous west coast friend Sara. That was all I needed to head to bed.
By the next morning before the world was awake I already had 20 emails waiting to give me virtual hugs. The emails, comments, calls, and love started flowing and have not stopped. I quickly realized it was preposterous of me to think I would have anything but supportive people in my life. How selfish of me not to give my friends and family enough credit to know they would not care if JD was lacking part of a chromosome. In fact, everyone seemed even more excited to meet the little man. Let’s be honest, with a second pregnancy people are happy for you but it is not as exciting as the first one (sorry 2nd, 3rd, 4th, etc children but it is true – you just don’t have time to be as focused). However, JD gave the second pregnancy a boost to keep people interested (almost like a Hollywood film – see I was destined to be a film director).
All my concerns about being a lonely mom vanished. In fact, JD has opened the door to more important people in our lives then ever before. I am blessed to say I am not a lonely mom of a special needs child. I am a loved mom of two amazing little boys who has more friends today then I did on January 28, 2012.
Sidenote: Apologies for a lack of blog entries over the past month. 2013 has started off quite busy and somewhat rough . . . but JD is doing better (he was under the weather) and the snow is melting. There are lots of wonderful things to update in the upcoming months so stay tuned for more entries about JD – less fluffy stuff I promise but I needed to get one more out.
|Who could be lonely with these two faces|