Written by Angela Naillon, mother of a child diagnosed with Di George Syndrome. Many parents receive the hardest news of their lives, something is different with your child. Whatever the diagnosis maybe, all parents have the same feeling, that we want our child to be perfect. No one expects to have a sick child or a child with a genetic disorder. The truth is that it happens. Above is a picture of my son, Cole. What do you do after a diagnosis? I did not know where to even begin. Our son had heart surgery for a right aortic arch vascular ring. I went in for a one week follow-up and found out that they tested him for Di George syndrome. I felt like I was hit by a truck. My son looks fine, acts fine, he just had some issues that led us to a heart doctor. I cried, a lot, he was our first born, and I could not believe that this could happen to us. I had noticed little things, like he was very behind in speech. I took him to In-Tot and had him evaluated. In-Tot confirmed that he was behind in speech, so we started speech therapy October 2008. Some family members did not understand, and they thought I was over reacting. They would tell me that he will catch up, just give him some time. Little did I know that with Di George syndrome speech delay is a very common characteristic. Luckily I did not listen to others, including doctors, and I went with my mommy instinct. I took him to In-Tot for his speech delay, and questioned three different doctors about a heart condition that they felt did not need repair. Since his surgery on 4-2-09 our son has gained 8 pounds, and his vocabulary has increased. I have a diagnosis now and I am very thankful for that. I can take him to the specialists he needs now too. We have been very blessed with such a strong, brave child. He has been tested, poked, and prodded more than any child should be, and he still loves us. My whole thought about this is believe in yourself as a parent, no matter what others may tell you. Mothers have a gift, we are able to bring children into this world, and be connected in a way that others may not understand. Our special children are here for a reason, and they will lead and guide us in ways we never thought possible. Support is the main thing a family needs. Sometimes it is hard for husbands and wives to support each other because they do not know how to comfort each other when they cannot cope with it themselves. If you are able to help each other, that is wonderful. It may take time for the both of you to be on the same page. Family or Church can try to help you, but sometimes it is hard because they really do not know what to say to you or even understand the roller coaster of emotions the parents of special needs children are experiencing. That is where Parent to Parent support meetings come in. There are families there, maybe with a different diagnosis, but the outcome and feelings are the same. We all see things in different ways. Wouldn’t it be great to talk to another mom or dad, so you know that you are not alone? A parent can talk to another parent about what they are going through. Come and join the Parent Support. First published in Reliable Enterprises' Parent-to-Parent of Lewis County newsletter
Archives for 2010
Waimanalo, Hawaii is one of the loveliest settings in Hawaii. My family, Peter and Esther, live there. On the beach. The following photos were taken from the front yard for New Year's by my grandson, Jason Green.