Today was a hard day.
The truth is, most days are.
Today also happens to mark the one year anniversary of Conor’s diagnosis.
I think I can honestly say that this day, one year ago, was the worst day of my life. I cried myself to sleep every night for at least a month. I have never felt so lost or so scared.
We wanted answers, we sought help, but we never expected this.
Can you imagine what it feels like to stare down at an internet page and feel every ounce of hope leave your body? To be crushed from inside with the insurmountable grief of losing the dreams you had for your family’s future?
I hope you don’t know what that feels like. I’m sorry that you even have to try to imagine it.
Finding out that Conor has Fragile X Syndrome made me feel incredibly helpless. Conor isn’t going to get better. He will never catch up. He will never be normal, or the same, or independent. I will never be able to sign him up for swimming lessons without adding “special-needs, intellectual disability” in the comment section.
The anxiety. The hyperactivity. The learning difficulties. The speech therapists, occupational therapists, and physical therapists. The special pediatrician. The appointments every single week. The IEP. The research studies. The support groups. The special accommodations. The special toys, and fidgets, and swings. The special attorney and special-needs trust fund. The newly robust life insurance and will.
This past year is not what I had envisioned for 30.
For some reason I have been counting down the days to this “anniversary.” Like it is something to look forward to or something to celebrate? Keith and I even joked about getting a cake.
We have good days, we have great moments, we have days filled with smiles, and Conor makes progress.
But even those days are hard.
Conor has a lot of energy. He doesn’t stop. He doesn’t settle down. He can’t do most things on his own so he needs constant attention and constant help. If he doesn’t get it, he tantrums. He destroys things. He hits and throws and completely melts down.
I’m drained. I always feel like I’m failing. No matter how much progress we make we know that the outcome is limited. Fragile X isn’t something that you can beat. If we aren’t focusing on what Conor needs to work on, he won’t make progress. If we don’t practice what he’s already learned, he might lose those skills too. We can’t stop.
We had a conference at Conor’s preschool a few weeks ago. We love his teachers and we are lucky to have found an incredible home away from home. They have bad days too though. One of Conor’s teachers candidly shared a comment from another teacher. She said, “Can you imagine having a day like today and then go home with Conor?”
Now I know that this was shared with me in the most lighthearted, best meaning way, but...MY GOD.
I get it.
Ohhhh do I get it.
In some ways it was validating. Like, wow. He really is that hard! It isn’t just me! When I feel drained and defeated it’s because he really is harder. But on the other hand, I don’t know what to do with a comment like that.
I do go home with Conor. On good days. On bad days. On sick days. After working a 12 hour day. I go home with Conor.
To say I wouldn’t have it any other way would be a lie. Of course I would rid the world of Fragile X Syndrome if I could. Keith and I often pause after a really good day or a particularly funny comment from Conor and look at each other and say, “Can you imagine what it would be like without Fragile X? It isn’t fair.”
It always seems like right when I’m digging myself the biggest hole of self pity, Conor does something to surprise me though. He peed on the big potty! Just like that, I’m reminded that there is still so much hope, so much good, so much to celebrate.
I wish we would have gotten that cake.