Thankfully, my friend Christine came to the rescue with this post idea! Not only does Christine have a terminally ill step son, she also has an autistic daughter. Check out her awesome blog at the Cupcake Bandits (after this post, obviously!)
Dear Cheryl:
If I could tell you some things that I have learned in the 1.5 years since diagnosis, it might help if you knew some of these things. However, knowing you the way I do, you wouldn’t listen to me anyway.
It WILL get better. You will no longer be up until 3am researching, unless you WANT to. You won’t feel like you need to know EVERYTHING about Cerebral Palsy before going to sleep every night.
No matter how much you want to stay in bed and have a pity party, know that Jillian is perfectly fine and happy 1.5 years later. In fact? She even has a sense of humor about the whole thing! Case and point a conversation we had a little while ago. “MOM! LOOK! I’m RUNNING in the house!” Me: “oh… Ok. Jillian” Lauren: “MOM. We’re NOT ALLOWED to run in the house, you have to tell her!” Me: “Um. ok. Jillian? no running in the house” Jillian: “Oh alright” (she was crawling REALLY fast)
Hospitalizations suck. Plain and simple. After 5 weeks in the NICU and subsequent hospitalizations, they suck. You really shouldn’t feel the need to buy Lauren’s love out of guilt. Yes, I get that you feel guilty that you’re spread thinly whenever Jillian is hospitalized, but, your girls know you love them without material things (I think I still need to take this lesson)
As you read, cerebral palsy is not a progressive disability. Although, it’ll sure seem like it when Jillian is growing and her muscles get tighter and tighter. You will be willing to trade almost anything just to make her pain free. Sadly, you have not found a way to make that happen yet but don’t give up! Keep faith in yourself AND Jillian!
There are going to be times that will break your heart. You’re human. You see your child hurting and you want to do ANYTHING to make it better. Case and point? Jillian being interested in potty training and when she tried to sit on the potty, she was too tight to make it work. This will break your heart, and this is OK. Those days are important to realize how far you’ve come and how much further you CAN go! (these lessons are really good at keeping you humble and grounded)
Eventually you’ll be involved with Holland Bloorview’s Parent Advisory program. And you’ll LOVE it. To find time for you, to actually feel important and VALUED as a part of your child’s care will help you more than you’ll ever know. After giving up a part of me to stay home with the girls (You stopped playing music….) I am very happy to report that you LOVE this gig. And you’ve always loved meeting new people, and bonus points that you are doing something you are GOOD at.
So, Cheryl from 1.5 years ago, don’t be so hard on yourself. Things WILL get better and no, life isn’t always sunshine and rainbows, but you will make it through. Lean on your friends and family, that’s what they’re there for.