21 hours ago
Tuesday, June 29, 2010
This will always be my safe place and you will always be my friends
This guest post is from the wonderful Janis over at Sneak Peek At Me, mom to Austin. He has a rare genetic disorder, Branchiootorenal Syndrome (BOR), that affects 1 in 40,000 births. Janis is a single parent, a real champion for her kid and an official Nice Person. I think you'll be moved by what she has to say:
If there was one thing I was absolutely not prepared for in this crazy thing called parenthood, it was this feeling that I sometimes have and desperately want to shake.
Now I am sure some people might look at my son's medical situation and think well that's natural, you know... to be a little envious of other new moms and their healthy babies as they walk out of the hospital and embrace their bright, shiny future together. And I agree, when we left the hospital there was that slight pang. In most cases, they were coupled and I wasn't. Their baby was healthy and mine wasn't. The comparisons were inevitable.
In the early days there was an constant internal struggle to for me to accept this life. I worried about things that may seem familiar to you. I lamented, "why my baby? Why did God choose me for this path?" Blah, blah, blah...
I tried very hard to just work right around it and for the most part I did. But eventually I stopped visiting a forum that I had been involved with during my entire pregnancy. While everyone seemed to be accepting of my situation and made loving remarks, it just became too much. As time went on the comparisons between their babies and mine were staring at me as if in BOLDFACE.
I think I did an awesome job moving on from that experience. Soon enough I found forums for moms like me. I found forums for tube feeders, neck breathers and children with craniofacial differences. Ah, my safe place. At first I was the newbie mom with more questions than answers. But all too soon I became a Pro.
It's amazing how many new moms come on board looking for answers to the same questions I had only a few short years ago. I was proud to have the answers and help people. It became "my thing." Then one day I realized that over the past two years I had watched many of these moms come and go.
Now they are the moms I am envious of. Yeah I know crazy, huh? It's not the typical moms anymore, it's the former Special Needs moms.
I am a mature, educated woman. I actually consider myself an excellent advocate for my son, you know I blog for awareness and all that jazz. I work hard to promote acceptance for those with special needs among my typical peers. Yadda, yadda, yadda... So I talk a really good talk. But Lord, help me...the truth is in this area, I am weak.
For a while there I had to cut back my visits to my "safe places" because I could not handle it anymore. Every time I read about another child getting their tracheostomy or feeding tube removed, I got sad. You know obviously I want to be happy for my friends and their children, but those feelings of envy crept up, right into my safe place.
Only difference this time is I was mumbling to myself, "Why NOT my baby?"
When I took a step back I realized how much I can learn from them and their experiences. They are now the Pros and I am willing to be the newbie once again. This will always be my safe place and you will always be my friends.
Thanks for peeking,
Posted by Ellen Seidman at 7:00 AM