This past weekend my family (and two grandmas) had the opportunity to attend the annual “Family Learning Weekend” at our state’s school for the blind. This is an event that we have missed once since Eddie was diagnosed and that was only because he was in an intense therapeutic program at the time. When we get any invitation to learn more about Eddie and talk with other parents like us, we just can’t turn it down. I’m definitely a “support junkie”.
This year, we were again asked to be on a “parent panel”. As I believe I’ve mentioned before, multiple sets of parents sit in front of the group and share stories about their children with visual impairments. I never turn this opportunity down because I hope to help someone in the audience through sharing. I always learn from the other parents, and I hope someone can learn from us as well.
Upon returning from our trip, my husband and I reflected about the whole weekend and especially the “parent panel”. We thought about what we mentioned, but also all the things we left out. I know it is supposed to be an honest portrayal of what we’ve worked through, but it is also supposed to be positive. The audience included many new parents to this “club” we are all members of, but never thought we would be. It is hard to look into their faces and explain that it doesn’t always get easier.
When Eddie was a baby, we longed for him to grow older so times would get better because we’d know more. What we’ve found, is that it does get harder. Every year, month, or even day comes with new expectations and obstacles we must face. I’m not saying that every battle isn’t worth it, but some days are truly a battle. The kind of scrimmage that leaves you emotionally drained and wondering where you’ll find the courage to fight again tomorrow. Those are the days that are hardest to share and that don’t provide the boost many new parents need and seek from the “parent panel”.
Truthfully, discouraging others isn’t the only reason we don’t share the hardest things. We also don’t share them because we can’t. We can’t admit to ourselves and others that we’re not always at the top of our game. We can’t admit that we don’t always find our situation a blessing because, on occasion, it is too hard to embrace. As I’m typing with a few tears in my eyes, I’m still having trouble openly stating that I can’t always hang my head high and hope that things work out. Sometimes all I can do is cry…a lot.
Because we couldn’t say it “live”, I am saying it now. I have said before that raising a special needs child isn’t easy, and I’m saying it again. Frankly, I’m saying it is hard. We need help from those close to us and we need support from all the other parents like us. It is hard…and it is sad…but thank goodness not all the time. Only sometimes. That is the real truth that I hold on to when I can’t get a grip. Yes, it is hard, but only sometimes. 98% of the time, parenting is fascinating and worth every bit of energy and love we put into it. However, I will continue to admit for my own mental health that some days I can’t win…but only sometimes.