We’ve only known about Liam’s 18 p deletion diagnosis for about eight months, but it’s already been a struggle figuring out how to balance life with this new knowledge. Sometimes it’s small things– like how we can’t go out to eat nearly as often as we used to, since Liam is VERY vocal at the dinner table (and not in a pleasant way) and has not learned patience yet, so he can be quite demanding when he wants food, which is ALWAYS! 😛 Even though I really love going out to eat, it has made us have more dinners at home and save some money, so it’s also a good thing.
Other times we struggle with balancing the bigger things… like figuring out how to financially take care of the health problems that we now deal with. Even though Liam is still young and would probably benefit from me being able to stay home with him and work on his progressing skills, realistically we need a second income to help pay for medical bills and other things. I have been feeling a lot of guilt in regards to this decision lately, and I know I’m going to miss my babies so much when I’m back at work in a month, but I also know that they will be in good hands with grandparents, and that Liam will be able to work on his socializing skills when he’s at an in home daycare part of the time. They also get to spend Mondays with just Daddy soon, so I think that will be good for the three of them to have together.
The biggest balance struggle so far has been giving equal attention to both Liam and Nell. We knew this was going to be difficult as soon as we found out about Liam’s diagnosis, and we talked about how we were going to work really hard at not having it be “all about Liam” all the time. After all, Nell is only three and a half years old– a critical age for developing social skills, reading skills, gaining control over her emotions, etc. Liam needs more hands on attention, since he has to be watched closely for safety purposes and still needs his meals fed to him, but that means we need to give Nell different kinds of attention. We try to ensure that Nell gets some alone time with Mommy or Daddy pretty often, so it can be “all about her” for a couple hours. She is a great girl, and a really good big sister to Liam. She needs to be rewarded for that!
It’s so easy to focus on Liam’s health problems, which are many and may increase over time– so far he has strabismus (eyes wander), ear tubes, ventriculomegaly (enlarged side ventricles in his brain), and an enlarged aortic root and small hole in his heart– and Nell even makes it easy to focus on those at times because she’s such a good big sister! I watched a woman with a disability talking about her sister and how she was such an amazing person through the years, and how siblings of children with disabilities often get put on the sideline. Even though I realize that that may be the way things pan out because of where our attention has to be at times, I hope that Nell will not get put on the sideline in our family. It is our goal that each of our children will feel equally loved and cared for throughout their lives, and that no one will feel left out. So far, I think we’re doing an okay job of it.