This past weekend my family (and two grandmas) had the opportunity to attend the annual āFamily Learning Weekendā at our stateās 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 canāt turn it down. Iām definitely a āsupport junkieā.
This year, we were again asked to be on a āparent panelā. As I believe Iāve 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 āparent panelā. 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 weāve worked through, but it is also supposed to be positive. The audience included many new parents to this āclubā we are all members of, but never thought we would be. It is hard to look into their faces and explain that it doesnāt always get easier.
When Eddie was a baby, we longed for him to grow older so times would get better because weād know more. What weāve found, is that it does get harder. Every year, month, or even day comes with new expectations and obstacles we must face. Iām not saying that every battle isnāt worth it, but some days are truly a battle. The kind of scrimmage that leaves you emotionally drained and wondering where youāll find the courage to fight again tomorrow. Those are the days that are hardest to share and that donāt provide the boost many new parents need and seek from the āparent panelā.
Truthfully, discouraging others isn’t the only reason we don’t share the hardest things. We also donāt share them because we canāt. We canāt admit to ourselves and others that weāre not always at the top of our game. We canāt admit that we donāt always find our situation a blessing because, on occasion, it is too hard to embrace. As Iām typing with a few tears in my eyes, Iām still having trouble openly stating that I canāt always hang my head high and hope that things work out. Sometimes all I can do is cryā¦a lot.
Because we couldnāt say it āliveā, I am saying it now. I have said before that raising a special needs child isnāt easy, and Iām saying it again. Frankly, Iām 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 hardā¦and it is sadā¦but thank goodness not all the time. Only sometimes. That is the real truth that I hold on to when I canāt 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 canāt winā¦but only sometimes.