H-O-L-O-P-R-O-S-E-N-C-E-P-H-A-L-Y
Holoprosencephaly...I could hardly say it, let alone spell it, and this word changed my life forever 3 1/2 years ago. I don't know why but lately I've been back there, in those first few days after we heard that diagnosis. What I feel and remember is so real and raw sometimes, how can a word or a phrase or a moment change someone so much. It did. That day, I really really grew up. I was in something that I could not change or have control over. I was in all the way. Never in my life previous had I experienced anything like that, I was a good runner, I could run away, I could let anything go that was "uncomfortable", but this I could not.
I have encountered many parents with children with similar diagnosis, and to be honest I admire their way of "seeming" to let go and just be "normal". Maybe they say the same about me, but I guess I'm letting the cat out of the bag. It hurts. Sometimes I just want to grab Eva and hug her Well. I want to hear her say momma so bad, I want her to want me and ask for me. I want her to complain and laugh when I tickle her. But when I hold her, I know she knows me and my silliness. I know she knows all of that is not important. When I hold her, I do feel her holding me right back.H-O-L-O-P-R-O-S-E-N-C-E-P-H-A-L-Y, I can spell it really fast now, I can say it without stutter. Please ask me about Eva, Please don't just stare. Please let your little children ask about her and not make them turn away. I know with out a doubt in my mind, that even without language Eva can speak volumes to you. Let me tell you about her. Let me share her with you.
I may not Tweet, Facebook or Blog our every day lives. I may not post medications that she takes, or post pictures of procedures she's had, but thank you to the parents that do, I know you educate by doing that, I'm not there yet. Medically speaking what Eva has is what Eva has, what time she has is the time she has, there is no cure, there is no fix, there is only purpose. I want to share with everyone who Eva is not what she has, and I don't know exactly how to do that. I mean, the last, very last thing I want is for anyone to ever look at my daughter and Feel sorry for her or me. I never want to put her in that light, Eva is happy being Eva and she teaches the rest of us that its ok, particularly mom! I'm still a little bit in a bubble about Eva, thus far my blogging has been about it, I'm working on it!
I am so proud of her work in therapy, about her going to school soon, about her cute long hair. But I swear that little girl is a teacher! She taught me how to spell, H-O-L-O-P-R-O-S-E-N-C-E-P-H-A-L-Y, M-O-T-H-E-R and more importantly F-O-R-E-V-E-R!
I can only speak for myself and our situation in regards to Alobar Holoprosencephaly, and how we live with it, what medical avenues we've chosen and what kind of intervention if any we will take. It is not a condition that can be boxed, although a physician and a scientist may say different. Although many children look similar, every single one of them is different. Although some parents may want to be an HPE experts they can only be an expert on their child, not any one else's.
If you find yourself there, If you find yourself hearing a doctor utter that word to you, remember two things. You are not alone and You are the captain of the ship, it is your child and your decision, physicians are there to provide guidance and answer questions but it is all your decision!
I leave you with these thoughts, I needed to just get them out there!
