Dear Parent,
Overwhelming, stressed, worried, sad, and fearful do not even begin to describe the feelings I felt during this time in our lives. There was a lot of unanswered questions running through my mind. A lot of things like, why did this have to happen to our family? We have no trace in our family history, why us? Why my son? Why Me?
Well…. why not me.
No one can prepare themselves for this type of news. It is tough to plan ahead for a baby, even tougher trying to plan ahead for one with a rare genetic disorder. At this point in time It may be hard for you to not think about the future but these boys are totally unpredictable.
My advice to a new parent is to first, not worry too much over the possibilities the future can hold. Educate yourself with different resources. Other parents are a great source of information. Second, Attitude is everything. Don’t dwell on how much harder your life may be now, or what your child may be missing out on. Their body may be limited but they still crave the same love, devotion and care that any normal child does. They can think, laugh, smile, touch,and most importantly they can feel. Let them feel all of the love that is around them. Live in the now and enjoy your child every day. This diagnosis doesn’t define you or your family. Your family is still capable of living a life full of experiences. You will just have to learn how to do things a little differently than you had imagined.
Jill
Overwhelming, stressed, worried, sad, and fearful do not even begin to describe the feelings I felt during this time in our lives. There was a lot of unanswered questions running through my mind. A lot of things like, why did this have to happen to our family? We have no trace in our family history, why us? Why my son? Why Me?
Well…. why not me.
No one can prepare themselves for this type of news. It is tough to plan ahead for a baby, even tougher trying to plan ahead for one with a rare genetic disorder. At this point in time It may be hard for you to not think about the future but these boys are totally unpredictable.
My advice to a new parent is to first, not worry too much over the possibilities the future can hold. Educate yourself with different resources. Other parents are a great source of information. Second, Attitude is everything. Don’t dwell on how much harder your life may be now, or what your child may be missing out on. Their body may be limited but they still crave the same love, devotion and care that any normal child does. They can think, laugh, smile, touch,and most importantly they can feel. Let them feel all of the love that is around them. Live in the now and enjoy your child every day. This diagnosis doesn’t define you or your family. Your family is still capable of living a life full of experiences. You will just have to learn how to do things a little differently than you had imagined.
Jill
