October is Spina Bifida Awareness Month and it reminded me that it's been almost exactly one year since we got the SB diagnosis. Wow, I can't believe how far we've come. I remember not sleeping the night before the appointment because we were so excited to find out if it was a boy or a girl. I remember Eddie's literally jumping out of the chair in the ultrasound room when she said it was a boy. I remember how the air in the room got so thick right after that when the laughing and joking stopped and the tech got very quiet. I remember the words I'm so sorry said over and over again to us in that room without any other explanation. I remember being ushered into the doctors office by all of these people who looked like they were about to tell me my baby had died. I remember balling in the doctors office waiting for someone to come tell us what was going on. I remember hearing words like "birth defect" and "death" and "termination". What I don't remember of that first appointment was anything positive. Maybe there was but as far as I remember it was a death sentence or a child that was a vegetable. Don't get me wrong, I have an amazing OB but there just isn't enough awareness about SB even in the medical field. After we met with the MFM specialists things were much more positive but even throughout this journey even now, we heard and still hear the "I'm sorry" line. I'm not!
My little man is my warrior not doubt, he has beaten the odds given to him in the beginning. Barreling through surgeries like a super hero! He is also my little miracle, but so is my daughter. I don't see him as a miracle because he beat those odd to get here or because he has SB, I see him as one because any mother will tell you that bringing a baby into this world is a miracle! The fact that you grow something inside of you and can love it as much as you do is a miracle! I see Bella as much as a miracle as I do Eddie. I even see it in my friends eyes when they look at their child. Their miracle is just like mine! It's tough to see others look at him and say "Wow, what a miracle!" and not mean this baby like all others is a miracle. I see him sitting next to his little "bestie" and to me their just two best friends for life. Who can celebrate their birthdays together one day!
Sometimes it's tough to hear people introduce him and follow that up with the SB conversation. I think inside, "why do we always have to open with, he has Spina Bifida?" I understand though that every conversation is a chance to erase the stigma of SB and bring awareness. I heard about a recent episode of Sons of Anarchy where someone was introduced to have had SB and it was because their mother did a lot of drugs. Fact #1 That's not how you get SB. I did not take drugs, I was not on antidepressants even. We just won the SB lottery so to say. Trust me in the beginning I spent a lot of time trying to figure out the magic formula that made SB, if scientists can't figure it out I'm not going to be able to. Best we can figure is that my body doesn't absorb folic acid properly. So folks, take you folic acid!!
This month I'll be trying to post as many links to for SB awareness and I hope that you share this blog with others this month so we can spread it! Just like any cause, the more awareness the more we can understand and maybe one day find out and maybe stop this birth defect from happening!
First link here;
What is Spina Bifida - http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8277225/k.5A79/What_is_Spina_Bifida.htm
Folic Acid - http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8277069/k.21A2/Folic_Acid.htm