Grief & CP (Guest Post by Cheryl)
May 26, 2010 by Cheryl
Filed under Mommy Ramblings
Grief – it’s a funny thing, right? If you’ve seen my posts before, you know that I have 2 beautiful daughters. Lauren who is almost 3.5 and Jillian who is 20.5 months but only 18 months adjusted. When Jillian was born 10 weeks early, we had no indication that anything would be “wrong”. Whenever I’ve blogged here, I’ve blogged about being a parent advocate, being strong for my child. Today? I’m not feeling strong.
When Jillian was diagnosed with Cerebral Palsy on October 22, 2009, the doctor who gave me the news, told me it’s ok to grieve. I was confused. Grieve?! I still (luckily) have my 2 beautiful girls! But, you know what’s funny? Grief can sneak up on you.
Now, I still consider myself a medical advocate for my child. If someone doesn’t advocate for my child, who will? That being said. The grief has started. Some days it’s better then others. Some days I adopt the “laugh or I cry” mentality. Today? It’s a crying day.
What happened that changed my outlook? I guess it’s been coming for a while. Some days I have hard days. Most days I’m fine. Jillian had physio therapy today. Jillian HATES her physiotherapist. I feel like I’m not working hard enough to find her a better one, but that’s the way the system works. Her physiotherapist walks in and Jillian says “I don’t want it”. Her PT has decided that she needed change tactics. She wants to be Jillian’s friend. Well, you’re not here to be her friend, do your work. Plus? The snide comments need to stop. You need to have parents on your side. Not working against you. I get told today “You know, if you had done her exercises more, this wouldn’t be happening.” or “you need to stop letting her play on the floor. You need to concentrate on getting her to sit up”. Right. Jillian doesn’t WANT to be stopped. She wants to get down and crawl. Chase after her sister. Do NORMAL kid things.
I guess the guilt started when my friend Anna had a 26 weeker. All these people flocked to her. Even people that had barely talked to her. I was there for her, almost everyday. It was easy since I lived close to the hospital. I had a hard time with it since her son and Jillian were due within 3 days of each other. But. I had a terrible thought. I thought “Man. I hope these people remember where I am when I have Jillian”. When Jillian was born at 30 weeks, I remember hearing that in my head. Did I cause this? Everyone talks about Karma. Did I do this to my little girl?
I am a fixer. I want to help people. I want Jillian to have a “normal” childhood. As normal as it can be going back and forth to doctors appointments and therapists. Why can’t I fix this? Why can’t I be happy about the progress she’s making? Am I pushing her too hard? She doesn’t sit unassisted. She doesn’t stand (properly) She doesn’t walk. She’s just now starting to crawl “normally”. So, grief. It happens even with healthy children. Grieving the fact that my life is now dominated by doctors appointments. Grief that I’m not fighting hard enough for her. Grief that I’m pushing her too hard.
So tell me. I hear “Jillian doeesn’t LOOK mental”. Well, CP isn’t a mental condition (For the most part. There are some aspects of CP that can be). Am I doing everything I can for her? Am I expecting too much? So yes. I have 2 healthy little girls. But still, I grieve. Is this normal? Am I normal?
Cheryl (Visit Cheryl’s blog by clicking here.)
Totally NORMAL. My son is 29 months old and is affected by the same rare skin disorder I am affected by. He is healthy. He cannot sweat. We have to limit our activities outdoors because his body temp will go from normal to 105 in less than 10 minutes on a warm day. His skin comes off his hands, feet, and scalp. When he gets a boo boo, it takes FOREVER to heal. When another child says they don’t want to play with him because of the sores on his hands/feet/scalp, I grieve. I went through the same thing, and it HURT. I don’t want him to go through it. So yes, it is normal to grieve when your child is “differently abled.” Cyber Hugs.
You are not being a bad mom or bad advocate for your daughter. It’s normal to have guilt. I had major guilt about The Diva. She was inside MY belly. She was MY responsibility. I should have protected her. I should have known. It’s MY fault she had meconium aspiration and almost dies at birth.
I KNOW how you feel. But it’s Ok. You can feel it, just don’t let it consume you (I learned that the hard way).
And yeah, tell the therapist to stop with the snide remarks or you will report her stupid ass. And find her a new one.