Thursday, January 28, 2010

Bit the Bullet

 So, I bit the bullet. I finally signed up for the FOD Support group. I had been resisting this for some reason...I think maybe because if I signed up for it and started participating in it, I finally accepted the fact that my little guy has a life long disorder. Yes, I understand that it has been almost a year since they first told us about it and his NB screening came back abnormal. But I have been on a long, and sometime dark journey since that day. To say that I didn't grieve about it would be an absolute lie. I have checked the website of the FOD Support group many times, but I just was not ready to give in and join. For the 11.5 weeks of agony that we waited to hear if Landon did indeed have VLCADD, I prayed and prayed and prayed to God that this was just all a big mix up. And then when his diagnosis came back positive for the disorder, even though it was the best possible scenario we could get other than a negative result, I was so mad at God and I blamed myself. Understand that they did tell me at least 100 times that there was nothing Scott or I did to cause him to have this disorder, it's genetic...end of story. We have been through so much the last year, myself especially on the journey of grief and acceptance that my little boy has a disorder that is life long. Having come out the other side of the depression and raw anger that followed his diagnosis I am now ready to jump in head first and do anything I can to put the test for this disorder on any and all new born screenings no only in the United States, but in the entire world. I guess you could call it my new life long goal, but I believe that by joining the FOD support group that I can help make this happen. I've probably said it a million times, but it truly is a blessing that we moved to Arizona and that Landon was born there. Had he been born in Texas, he would not have been tested for FAOD's and we would not know of his disorder, and it is very possible that when he was so sick and hospitalized in December he may not have made it. But since we were armed with all of the information and kow how on what to do should something like that occur, I have a wonderful happy and healthy one year old running around. So, I guess what this long drawn out paragraph is supposed to say is that I have finally accepted his diagnosis and I want to do something about it, and help others who will go through the same journey that my family has over the last year, and the years to come!


  1. Dear Regan,

    today, my mom told me she had found your blog online. I have a little girl of nearly 7 months named Viola, and she has VLCADD. I immediately went online, and I have been reading and crying a bit for the past ten minutes before deciding to write you. I haven't read all of your postings, I just jumped to the keyboard, but to me it sounds like you and I have had the almost exact same experience and that our children's medical states are very alike.

    My name is Fie Olsen, I'm 30 years, born danish and me and my family (me, my husband and Viola) live in Copenhagen, Denmark's capital.

    I was hoping you would write me? Maybe we could share our knowledge or just tell stories about our beautiful kids :-)

    All the best to you and your sweet son!


    my mail is:

    PS: my blog (Flo's Diner via the comment link) is in danish - and it's not about Viola or the disorder, just so you know :-)

  2. Dear Regan,

    Saw the link on your email to the FOD Group. Just wanted to tell you that it does help to be able to give back to the group. My daughter is 17 and has VLCAD (the non-cardiac type, although she was diagnosed after a crisis as they didn't have the screening back then). I long stopped "needing" the group for my support (although in the beginning I sure wish that I had had the group, as it was tough being one of the early VLCAD families!)

    In any event, you went through what I think we ALL have gone through, and once in a while still do. But being able to help others who might be scared or unsure of what the future may bring can be a blessing. I know that it made me stronger for Jordan. And it does get easier to cope with.

    We also have the seperate VLCAD only group. It's a Yahoo group...some of the other VLCAD parents only participate in that, as it is VLCAD specific. It was started by 2 moms in the FOD group. You can find it through Yahoo if you're interested.

    Feel free to contact me any time - you too Fie!
    Best Wishes,
    Dawn, and Jordan