Patience is a virtue in what exactly?

I've been taught that patience is a virtue and for the most part I am an extremely patient person. However, my patience is quickly coming to an end. I waited for over two years...yes that's right two years to see a developmental pediatrician. All he did was review his medical chart, weigh him, took his height, asked him some questions and said "yes, there is a problem." I am referred to a geneticist who in turn tells me that she feels that he has Floating Harbor Syndrome and wants to run a series of tests. I don't have a problem with any of that but what I do have a problem with is that every single test has at least a six month or more waiting list. By the time my husband and I find out exactly what our son has he will be driving!!!! I am just frustrated that the medical community feels that we have all the time in world and that we all are on their time schedule. The longer we wait for these tests, the more behind our son gets with his education! Who were the people that taught those doctors to read, write and do math...TEACHERS! I guarantee that if it was their child they would not be placed on waiting lists...they would have immediate access to care!

Conflicted...

I find myself conflicted lately. I love my boys and would not trade them for anything in the world, but I find myself worrying what type of future is in store for them. I love them with all my heart and will do anything for them, however, as with every other middle class family in America there are financial and time constraints. Will they be able to make a living? Have a family? Children? Will they learn to love each other and always be there for each other? If something was to happen to me would they know that I loved them deeply? It is hard for me to imagine not being their in my children's lives but lately I wonder how long I am going to be able to participate in it. I am in the age bracket of when colon cancer strikes my family. Yes, I do get check ups for that, but it all depends on the doctor. Did he take his time and thoroughly analyze everything? Only he would know but my life rests in his hands. Will my children have to live in fear of this, as well? How do you go about explaining it to them? I feel that much is on my mind and none of it is answerable. Only time will tell, until them I plan on loving them and cherishing every moment with them and hopefully getting some sleep at night (lord knows I could use it).

In the beginning continued...

I am in no way implying that any person with a special needs child "deserves" them or that they did not do something right. What I am saying is that there is nothing in my family tree that would increase our chances of having our children diagnosed with Floating Harbor Syndrome. I understand that there is unexplained phenomenon in our world but I NEVER thought that it would happen to me. I am not looking for a sympathy party nor am I looking for this to be explained. It's happened and now my wonderful husband and I need to embrace it. We LOVE our sons with all of our heart. At times, we are overwhelmed, fearful of what the future may hold for our children, and anxious because we do not know what is going to happen next. I am hoping that this blog will help bring peace of mind to my husband and I. Through this journey we will shall gather strength to support each other and our children, a determination to do what is just and right, and time to enjoy and take pleasure in our family. In our bonds we grow closer and gain a deeper insight into the miracle of life.

In the beginning...

I NEVER thought in a million years that I would have a child with special needs, let alone a child with a genetic disorder. I mean, I did everything I was suppose to; I graduated from high school, went to college, met the love of my life, graduated from college, got married, started my career, and five years later had our first child, Elliott! I never took drugs and drank a lot of alcohol. A glass of wine every couple of months. My husband and I lived a healthy lifestyle

Definition of Floating Harbor Syndrome

As stated in the Online Mendelian Inheritance in Man (OMIM), Floating Harbor Syndrome is a rare genetic disorder characterized by proportionate short stature, delayed bone age, delayed speech development, and typical facial features. The face is triangular with deep-set eyes, long eyelashes, bulbous nose, wide columella, short philtrum, and thin lips (Lacombe et al., 1995).