Thursday, October 22, 2009

Dropping in to say Hi

I popped over to Ollie's Tale today and noticed it had been 3 weeks since we'd last posted anything and thought I'd make a little update and let you know how Bekka and I are doing. My standard response when people ask is "Good days, bad days but more good than bad."

It sounds a bit non-committal but it's really how it is. Days go by where you only think about the little guy a bit (and those are more and more often the good memories) and other days when the entire last year hits with the full weight of every event in every excruciating detail. Most days fall somewhere in between those extremes.

All in all, Bekka and I are doing pretty well. I'm (mostly) back to work full time and Bekka is still working part time at Stride Rite. We are putting our lives back together and enjoying our time with each other. In some ways Bekka and I are getting to know ourselves and our relationship again and that's been wonderful. The trauma we experienced with Ollie could have torn us apart but instead it's made our bond stronger and deeper.

Yes we wish we still had our little man to hold and pat and squeeze. We love him and we miss him, but when we think back to the torture we had to put him through every 2 to 3 hours that last month - we are glad he is in a more peaceful place. Never forget that SMA is a perverse and labor intensive disease for the caretaker and the child. Get tested so we can stop it.

Thursday, October 1, 2009

SMA Featured on CBS' The Early Show

CBS' The Early Show segment, In Your Genes, this morning featured a family affected by SMA.  The couple lost their second child, a daughter, to SMA when she was just three weeks old.  When they decided to try to have another child, they chose to undergo in vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD).

I have contacted our local CBS affiliate regarding our story.  My hope is that we can increase awareness of SMA and carrier testing as well.

Cross your fingers!