One of the many things that I have learned since having little miss Ava is to lean on those around you. At first, I was embarrassed to have to ask for help, whether this be in the form of emotional support, a babysitter for the boys, a meal for my family, or a ride to the hospital when I was still healing from my delivery. However, at some point I realized that our life has forever changed, we now have an amazing little girl and I would not change this for the world, but she is an amazing little girl that requires a lot of care and attention, and sometimes although it pains me to say it, I cannot do everything on my own. I can’t be at the hospital with Ava and at the same time with my boys making them dinner, I can’t always make all the phone calls that need to be made to insurance companies and doctors without Meema helping keep the kids quiet in the background, and most of all I have learned that I cannot bear the emotional burden on my own.
While I love my husband dearly, he is not the talkative type. He does not talk about his feelings and is somewhat uncomfortable when I talk about mine. He will listen to an extent, but at some point tunes out because he simply does not know what to say. I used to get upset by this and eventually ended up just trying to keep it all inside. Anyone who has tried to do this though, understands that this is definitely not the healthy way of dealing with things. It is so unhealthy in fact, that I ended with heart palpitations and extreme headaches that caused me to be evaluated for brain tumors and heart attacks (after a short scare regarding an aneurysm that they had found and then some follow up testing showing that they were incorrect-my diagnosis was stress).
I have found that I deal with stress best in two ways….
1. I talk. I like to talk about my concerns, worries, and problems until I have vented enough to put them aside or come up with some sort of resolution.
2. I research. I like to know about what I am dealing with. Late at night, when I am up with Ava trying to get her to eat and/or go back to bed, I browse the internet looking for possible reasons for her size and symptoms. One such night, I stumbled upon the Magic Foundation and information on children who are Small for Gestational age as well as those who have Russell Silver Syndrome.
My family and friends, and yes, my quiet husband, try to do what they can to help me cope; they have listened to me countless times express my feelings, thoughts, fears, and ideas. They have even helped me research, sending me links to articles, news programs, or websites, that have information on a child that sounds similar to Ava. They have been amazingly supportive and I am so appreciative for everything. However, sometimes I find I need to talk to someone else who knows where I am coming from-someone going through the same thing right now with their child or who has been through what I am going through and can offer advice. I am happy to say that I found a way to connect with others who are going through the same things. I am going to share these resources with you so that if you have a child similar to Ava you can take advantage of the amazing support that I have found.
Name & Description | Link |
The Magic Foundation The Magic Foundation is an organization made up of families affected by growth disorders. It has information on various growth disorders, useful links, and an amazing amount of support. You can view many areas of the site without being a member or can make a donation and become a member-taking advantage of all that they have to offer. As a member myself, I highly recommend it. | |
The March of Dimes The March of Dimes provides information and support to those impacted by premature births, complications during pregnancy, and/or the loss of an infant, among other things. They research the things that can go wrong during pregnancy and aim to help mothers have full term pregnancies. When Ace and Ava were born early, I was so scared. The March of Dimes website had a wealth of information that was useful to me during this time. We participate as a family every year since the birth of Ace and Ava in the March for Babies. | |
Yahoo Group RSS-Support This is a listserv through yahoo groups for those who have RSS or family members of those who have RSS. As a member, I can tell you that it is so nice to be able to talk directly to those who have had to fight to help their children grow as we have for Ava. | |
Yahoo Group SGA Chat This is a listserv through Yahoo Groups as the RSS-Support is but it is for parents of children who are Small for Gestational Age. Again, an amazing resource for information and support. | |
BabyCenter Community Failure to Thrive This is run the same way a newsgroup is. It is a support group for those who have a child who is failure to thrive. You can simply read posts that others have put up or you can create a post yourself and wait for others to reply. |
