I’ve really been struggling this week with the reality of my son’s disabilities. I think i’ve been unknowingly going through the stages of grief. But I am working on moving from depression to that final stage of acceptance. It feels so wrong to call it grief, but J’s 10 months truly have been a grieving period for us as parents. Like it or not, we’ve been grieving the loss of the baby and of the life we thought we were going to have. Grieving the fact that the life we expected and planned for just doesn’t exist.
When we decided to try for a baby, we, just like most people, pictured having a normal birth that produced a typical baby who would meet all his milestones on time or early. We thought we’d have a little boy crawling around the house, getting in to everything, and playing on his own by now. We did not expect all the doctor’s appointments, diagnoses, medicines, tests, delays, dependency and struggles. We thought that the worst thing that would happen in this first year would be colds and ear infections, not cerebral palsy and a vision impairment. Simply put, we expected things to be a lot easier than this. Like…A LOT!
I’ve been trying to figure out why it is that I’m struggling so hard to get past these feelings and I’ve come to the realization that it’s because of how I’ve let other people’s opinions and experiences steal and impress upon my thoughts. I’ve been so caught up in peoples’ opinions, criticisms, and questions that I’ve allowed it to keep me from loving my baby for everything that he is. I let their impressions of my son’s progress and of my parenting to get the best of me. It has often times caused me to question my decisions.
“What will they think of me as a mom? What if I’m not strong enough to handle this?”
“Do they think I did something to cause his disability? Do they think I’m not doing enough to help his development?”
“Do they feel bad for me? Do they feel bad for my baby?”
When he got his glasses this past weekend, my husband and I were both worried that people would think he was stupid or that there was something wrong with him. All of the medical terms make me feel like I have to strive even harder than before to be perfect. I have to have a definition and explanation for everything. People can’t think I’m struggling to make it through each day. I can’t let them see my worries. I am responsible for making questioning old ladies at the grocery store not feel guilty for asking questions and to feel comfortable around a non-typical baby. I have to be sure family feels good about the role they play in J’s life and empowered to help him. I even feel like I have to dress up just a little more when I go out so that people don’t see a messy mom and think, “Oh, bless her heart”. I have to put on the show of a happy face so people don’t feel bad for me. Or at least that’s what I thought. I have been trying way too hard to please others and make our situation look like something that it isn’t. I’ve been handling it, but I haven’t always been okay.
How do I, how do we, move to acceptance? I’ve listened to a few podcasts lately on motherhood and on special needs issues and I’ve realized that my son’s disabilities are not different or weird to him. They are his normal. They’re his comfort zone and they make him a part of a tight community. As he grows, they will be part of his identity and something that he wouldn’t trade even if he could. I’ve realized that I need more understanding, because, unlike me, Little J has no choice but to accept his differences. So, I need to understand him and others with disabilities and special needs- I need to learn what it all means. I have to stop letting others have such a strong impression on me that they affect how I speak or think or act. Hearing those things and just learning more has freed me a bit from constantly worrying about appearances and impressions. It has given me my first push towards acceptance. Acceptance of my son’s disabilities, of our new way of life, and of Little J for who he is. Even if I don’t feel okay everyday, it really is okay. It will be okay.
Ultimately, I have realized how vital it is to pay attention to and monitor what or who I’m listening to. What we hear leaves impressions on us. What or who am I letting make an impression on me? Whose impressions am I focusing on? What we hear molds our thought processes and our thoughts drive our emotions. So, if I allow myself to think negatively then my whole day will be driven by sadness or anger. But if I do my best in each individual moment to think positively and let bad things go, then my emotions have the opportunity to be driven by hope and joy. It is amazing how much changing your thoughts can change the direction of your days. We all need to capture negative thoughts before they set in and replace them with more positive ones. Now that doesn’t mean we have to be unrealistic. We can’t blindly spread rainbows and hearts. I have to be realistic about the fact of J’s cerebral palsy, but I also need to remember how much worse off he could be and to be thankful for all of the help we get from doctors, therapists, and family. I have to look forward to the future and the day we will finally get to celebrate new milestones. That’s when I’ll start having more positive days and being able to accept and enjoy this life I’ve been blessed with.
Who are you listening to and letting leave impressions on you? What impression are you leaving on others? Let’s make sure we’re taking in positivity and lifting one another up every chance we get.
“We use God’s mighty weapons, to knock down the strongholds of human reasoning and to destroy false arguments…We capture their rebellious thoughts and teach them to obey Christ.” 2 Corinthians 10:4a-5