At some point in our lives we have all done it. We look at someone and start comparing things whether it’s material like money and clothes or something intangible like happiness and love. At the end of the day no one’s life is perfect and we should be happy with life or change things in our life that may lead us to happiness. Most of the time with me, that is much easier said than done.
As a parent with a child with special needs, I almost always compare our lives with people around us. When it is just the three of us, I am ok. We live in our world where we can be happy and make our lives easy. But when we go out in public like the mall or at a gathering, I can’t help but wish for the lives of some of the other parents. I’ll see a kid simply walking next to her parents, or a toddler helping himself to some crackers and it will break my heart. I wonder if Justine will ever do any of those things. She is 4 years old, the age where she should be discovering so much of the world, but she is unable to explore it on her own two feet. And even worse, if she wanted to, she is unable to tell us.
I fear I will never get to dance with her or hear her say “I love you, daddy”. These are the same fears I have had for the past 4 years. There has been some slow progress which is always good, but I can’t help but wonder how it feels to just know the sound of your child’s voice. I would give anything for her to coming running into my arms when I get home from work. I won’t get to enjoy these things today, or tomorrow, or anytime soon. I feel like we have earned it. We work so hard to give her every opportunity to develop with therapy sessions, multiple specialists, and assistive equipment. And we have been at it for 4 years. I feel cheated.
But then Justine does something to remind us of what is important in life. She laughs to herself about her silly hand. She does this thing where she raises and extends her arms like she is the conductor of an orchestra. Or she will look right at me, in complete amazement as I sing “Rainbow Connection” for the millionth time to her. SHE is happy.
As far as she is concerned, she is able to get what she needs from us. She gets to hang out with friends at school and with her cousins, aunts, and uncles from time to time. And she has her grandparents. All of mine had passed away when I was very young so I never understood that grandparent-grandchild relationship. Now, I absolutely get it. Before everything else, I want HER to be happy. Sure she may get mad at us every now and then because she has to go to her therapy session, but for the most part she is happy. When I look at her smile and the progress she has made, it is all worth it.
I will probably still have my moments of weakness and be jealous of families around me living their “normal” lives. But they are not my priority. Justine is. She has everything she needs and so do we.
