Chromosomal Questions...and answers?

As a new parents of a sweet and beautiful baby, the last thing you want to hear is that your precious angel is genetically abnormal. I know what this means, there is no sugar coating it. It was the most difficult thing to swallow that I have ever heard in my life.

Furthermore, we still to this day 8+ months later have never actually met with a geneticist to discuss Elin's genetic situation and critical information such as her karyotype, how this may affect her physically, mentally, her lifespan, etc. So most of the information I have at this point is a result of independent research or discussion with other doctors, specialists, etc. who have offered insight

Apparently reaching a geneticist is an IMPOSSIBLE feat. No kidding, they have a 6--8 month wait minimum...if you are lucky. I am still so unnerved by this and frustrated. I cannot believe that a conversation so vital to the outcome of an entire being's life can be tabled for almost a year or more. In the meantime, milestones are slipping away and no one can explain it or tell you why. Not to mention, you browse the Internet for answers and clarity and you either find a lot of doomsday information and/or you realize your child is one of a handful of people in the world with their condition and the information is simply unavailable. This has been our experience.

It is certainly a tough road. I wouldn't wish this on anyone. However, through time I have learned to accept that Elin is who she was meant to be and she is all she knows. She doesn't know what could have been, or might have been. She only knows what is. SO we can choose to make "what is" a powerful, enjoyable, loving experience for her. Or, we can be upset and feel cheated and ultimately make her situation a negative (which doesn't alter the outcome anyway). We choose joy, we choose to trust, we choose to persevere. We choose to accept our child as she is as a beautiful and bright addition to our family. We choose to do everything within our power to maximize Elin's potential and give her every opportunity to enjoy the world around her for as long as possible.

So from what we see, Elin is still in good health. All her organs function appropriately, all her systems work appropriately. So we are hopeful that she will continue to have a healthy body.

As for finding answers to genetic questions, that will come very shortly we hope!