April 29th 2011 I came home to a message on my house phone. It was the nurse from the neurologist's office telling me that she has some news from the blood work they did on Aiden 4 1/2 weeks ago. Man did my heart jump into my throat. I felt myself get shaky instantly. What did they find out? Were they even gonna tell me over the phone? Oh GOD was it Duchenne or something worse? All this goes through my head within seconds as Noah senses my nerves on edge. He then tries to calm me with his sweet words. Could I love him more? Yes...because my kids surprise me more and more every day. They are still learning who they are and THAT I love the most. Sorry I got off topic. I find my purse to get the number so I can call them back. Of course I now have to leave a message....It only took them 10 minutes to call me back, but that is a long time to wait when I am shaky and pacing the kitchen. The first thing she says to me is " Nicole, he does NOT have Duchennes " I instantly started to cry as she goes on to say " But he does have Becker Muscular Dystrophy, you can breathe now ". She tells me this is the BEST news that she could have told me. I apologize for crying and she says " that is ok, but now you have me crying ". Never has a nurse cried because of me, but you know what...she must obviously be a Mama too, she new what we were going through and maybe she knows because it comes with the job, but either way THAT even brought tears to my eyes on just how sweet she was. I don't think I could have heard this news a better way.
She went on to tell me that now we need to get in touch with the Muscular Dystrophy Association to get him registered and then make our first appt. He will now have two neurologists..the one we have now for his seizures and this new one just for his MD.
The more and more me and Robbie talk about this makes us feel that.....yes we do wish that Aiden didn't have this, but you know what? We FINALLY have answers and THAT gives us peace of mind. Of course we would never wish this on any parent..heck we didn't wish it on us, but it is here and all we can do is work with it. I may sound calm, but inside I feel like my heart is being ripped into a million pieces...Aiden is our baby as is Noah. I truly feel things happen for a reason..weather I like the reason doesn't matter, but by Aiden having that seizure...THAT is the reason we found all this out...I don't like that it happened, but it did and now we know why.
We truly..truly can't Thank ALL of you enough for the Thoughts and Prayers and LOVE being sent our way. We honestly feel that they helped. Please keep them coming..this is something that he will have for the rest of his life. Next is learning about it and possibly needing to get Noah tested...that will be another Scary part in our lives again, but we made it through this Thanks to All of you and we will keep on making it through. Much..much..much Love from us to YOU!!